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Impact

Published by the Institute on Community Integration (UCEDD) & Research and Training Center on Community Living
Feature Issue on Sexuality and
People with Intellectual, Developmental
and Other Disabilities

Volume 23 · Number 2 · Spring/Summer 2010

From the Editors


As this Impact issue is about to be published, one
of the pioneers in sexuality education for persons
with disabilities has just passed away. Her name
is Winifred Kempton and one of the reasons this
Impact issue is able to provide the depth and
breadth of information it does is that she was
among those who, over 40 years ago, publicly
acted on her conviction that individuals with
intellectual, developmental and other disabilities
have the right and need to receive information
about sexuality. The tools she created for sexuality
education (including a dozen books as well as
sexuality education programs she authored or co-
authored) approached individuals with disabili-
ties as fully-formed people with an intrinsic right
to know about and participate in this part of the
As Nick (left) was growing up, he and his father David (right) found ways to have meaningful conversations about life,
including sexuality, which helped Nick become a confident man who has strong relationships. See story below. human experience. She was a genuine advocate in
the truest sense, and will be missed.
Today, other pioneering voices are carrying on
Identity, Disability, and Sexuality: that advocacy and education work, and in this
issue of Impact readers will have the opportunity
Reflections From a Son and His Father to hear from some of them as they talk about the
range of issues that are part of sexuality in its
by Nick and David Wilkie fullness. It’s our hope that the articles gathered
here will provide information and inspiration
We – Nick and David – are a colorful son and father duo who reside in the Twin Cities. We
both work in the human services field. David (dad) works in health care and Nick works for that further support the right and opportunity
the Metropolitan Center for Independent Living. For this article we were asked to reflect on for people with intellectual, developmental, and
the father and son conversations about sexuality we’ve had over the years. In order to write it other disabilities to understand and express this
we really needed to do some thinking about who we are, and the philosophical approach we essential dimension of human life.
have taken toward the topic and our lives. These are our reflections. We hope you enjoy them.

Nick’s Perspective What’s Inside


Overviews
I feel very fortunate to have grown up in a household where my differences and chal- Personal Profiles
lenges were not the first thing everyone talked about. This was a key part of the philos- Resources
ophy that my dad took on in raising me. When my dad would introduce me to people
he would say, “I would like you to meet my son Nick,” and not, “I would like you to
meet my son with a disability.” This was crucial in my identity development. To have
that separation between me and my disability made all the difference in the world.
Carrying that separation throughout the rest of my family and friends was challeng-
ing at times, but overall it proved to be very successful. Once family and friends saw
that my disability did not change the way my dad saw me, or the way that he treated
[Wilkie, continued on page 34]
2 Overview

Self-Advocates Speak Up About Sex


compiled by Karen Topper and Katherine McLaughlin

Members of the Green Mountain Self- • Justin: I got the talk from my cousin. • Elizabeth: My aunt told me it was
Advocates in Vermont recently held a He said this is what it is, now go do it. refreshing.
discussion group about sexuality for the • Gabrielle: Seriously, I’ve never gotten • Henry: If you have sex, do it behind
purpose of sharing their thoughts and the talk. closed doors. Make sure they lock and
experiences in this article. Below are their nobody can come in.
• Molly: I’ve seen having sex on TV.
responses to a number of questions about
• Justin: Go on the Internet and you can • Ida: Puberty is part of becoming an
the messages they received about sexuality
find it. You watch any channel on TV adult.
over the years, and why they think sexuality
education is important. This is a record of and you can see it. It is on soaps. • Rebecca: Yes, no one explained pu-
the conversation as it occurred, and in some berty to me. I had to learn it by myself.
places they respond to one another, as well
What were the messages you got about sex
as to the questions. Their real names have
from adults when you were growing up?
not been used at their request.
• Jennifer: Don’t have sex. And I agree
I got my information from a
with them. Don’t have sex. You will
Who first explained sex to you?
get pregnant and die. My parents
special ed class, but other kids
• Roy: My parents, then my friends in would say, “Ou, ou, gross, sex.”
much, much more detailed discus-
were jealous of me because of the
• Andrew: You’re not ready to have sex.
sion.
• Gabrielle: Make sure you are protect- information I got. It was better
• Amber: I learned about sex in a sex ed before having sex.
education class by watching a movie
• Andrew: You can’t handle having sex. than the regular classes, which
in school, in 4th or 5th grade actually. I
• Molly: My favorite one is, don’t have
was mainstreamed.
sex until you get married.
were just about diseases, that’s it.
• Rebecca: I have no idea. In school,
it was like child development class • Justin: You are not financially stable.
or I want to say maybe in 6th grade • Clara: Like if a guy has a disease in his
• Ida: Especially for some of us for
body, you have to be careful of that.
whom it was a surprise and we got it
• Amber: From the sexuality class I took early. My period came early and I said
I learned about sex in a sex last year, I learned to come right out what is this crap?
and say it – “get tested” – because you
• Rebecca: Mine happened in a movie
education class by watching a don’t know what is out there.
theater. I went in the bathroom and I
• Ida: You can get AIDS and HIV. When said what is this mess?
movie in school, in 4th or 5th grade I was in 6th grade we did a unit on
• Clara: When I was young I read this
AIDS and HIV. The best way to avoid
actually. I was mainstreamed. that is abstinence, not to have sexual
book about becoming a woman. It
talked about your feelings and your
intercourse. They did it on HIV and
body.
Ryan White and hemophilia.
we watched a movie. I don’t know if • Adam: Looking back on the messages
it was about sex, but I think it was • Rebecca: Actually I was told if I kissed
I got… Wrap your dick.
about reproduction. somebody I would get pregnant.
• Jennifer: I don’t get it? [someone
• Julie: My Mom did talk to me. It was explained it meant putting a condom on
hard for her. It was kind of awkward Did you get any positive messages? your penis].
for me.
• Roy: That is was okay and natural. • Adam: One that I got that was really
• Molly: My grandma talked to me helpful was sex is more than just inter-
about sex. I don’t know why. It was • Kevin: My parents were always telling
course.
awkward though. me it is a great, great thing, but be
careful with it. • Andrew: It is not all about sex.
• Elizabeth: I got the talk from my
brother. It was awkward, embarrass- • Andrew: That it is fun.
ing, but it was helpful.

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Overview 3

Did you get any positive messages, like • Justin: They want to save you and • Rebecca: So we are able to make
you look really attractive, hot, you’re shelter you. They want to be the informed choices.
sexy? momma and poppa bear. • Elizabeth: So we can pick the right
• Adam: Not as much in high school. person.
• Henry: Not really. What was the most important thing you • Adam: For help with the toughest
learned about sex from adults when you part of the relationship, making it
• Molly: This guy tried to pick me up
were growing up? last.
and said I was good looking. And I
don’t think I am good looking. • Gabrielle: So we can be safe.
• Elizabeth: Wait until you are married
for the first time. • Andrew: Because we all have desires/
needs and that’s okay.
How did you feel about the messages you • Gabrielle: If you want it, use protec-
tion. • Clara: To get correct information.
got?
• Clara: Find a good guy. Choose the
• Molly: It felt like I was kid. I am 23
right one and don’t do it spur of the
years old and I can do whatever the My parents were always telling
moment.
hell I want.
• Adam: Sex is more than intercourse.
• Andrew: Make sure you are ready for
me it is a great, great thing, but
Did you ever notice if the messages you it, ready for the responsibility.
got were different than the messages be careful with it.
given to your sisters or brothers?
What do you wish adults would’ve told you
[A resounding yes! Even from people who
but didn’t? • Kevin: To get resources/tools to
had been quiet up until this time.]
• Gabrielle: If I had known everything make healthy sexual choices.
• Justin: Just because I have a disability that I know now, I probably would • Roy: So that people know their rights.
it doesn’t mean I can’t have a normal have waited.
relationship. • Molly: So people with disabilities
• Ida: I wish they had given me an intro- don’t put themselves in bad situa-
• Molly: I know my sister and brother duction to puberty. tions.
got the talk. They don’t treat me like
• Adam: The only thing I can think of • Julie: So we will know how to protect
a normal human being.
that I would have wanted to learn at ourselves.
• Amber: That is because you have a an earlier age is what a vasectomy
disability and they think you are not. is. I don’t have other regrets because Karen Topper is the State Coordinator
• Elizabeth: I can tell you, nobody is people did talk to me about 90% of it. for Green Mountain Self-Advocates,
normal in this world. I got my information from a special Montpelier, Vermont; she may be reached at
• Andrew: What is normal? ed class. But other kids were jealous topper@sover.net. Katherine McLaughlin is
of me because of the information a consultant on sexuality and disability; she
• Justin: It is a dial on your washing
I got. It was better than the regular may be reached at 603/499-1735 or http://
machine.
classes which were just about diseases, www.disabilityworkshops.com. Karen and
• Andrew: Normal is just being your- that’s it.
self. Katherine, along with Jessica Lindert, have
• Roy: The opposite of what they told co-authored a curriculum titled, “Sexuality
me. They told me “don’t do it,” “be Education for Adults with Developmental
When people talk to your brothers and careful,” and “keep it in your pants.” Disabilities” published by Green Mountain
sisters and not you, what message does Instead of making it so vague with Self-Advocates and Planned Parenthood
that give? one phrase sentences, say “It is okay.” of Northern New England (PPNNE).
Kind of give more of an explanation. For ordering information visit http://bit.
• Gabrielle: They wanted me to learn it
ly/ppnnecurriculum or call PPNNE at
on my own.
800/488-9638.
• Ida: They want to shelter you, protect Why do you think people with disabilities
you. need sexuality education?
• Jennifer: All they say is, “Ou, don’t do • Roy: So we can learn to have healthy
it.” Thanks for helping me. relationships.
4 Overview

Sexuality Meets Intellectual Disability:


What Every Parent Should Know
by Leslie Walker-Hirsch

The word “sexuality” is an emotionally- the biological maturity of young people prepared to do that successfully, but they
loaded one! The word “disability” is also. with an intellectual disability is likely to are not skilled at using the special educa-
What happens when they are combined? keep pace with that of typical children, tion teaching strategies to teach students
Many people want to equate sexuality the social, emotional, intellectual and who learn differently. Consequently, there
education with permission to be sexually experiential maturity is most likely to is a gap into which many students fall.
active. This is not so!! Sexuality educa- lag behind that of typical children. The Sexuality education for school-aged
tion is the opportunity to learn, under- implication of this situation is that there children with intellectual disabilities is
stand, and practice what it means to be is now a greater than ever disparity an important aspect of their social edu-
either a man or woman in the culture between biological age and social, emo- cation that can get overlooked in lieu of
and time in which we are living. And it’s tional, intellectual and experiential age academic skills. What would constitute
an opportunity to receive instruction for children with intellectual disabilities. a meaningful sexuality education for this
about how to live happily, safely, and Children with intellectual disabilities are group of children and teens? They need
responsibly as an adult. being asked at a younger age to respond similar information to that of typically-
In the bad old days, sexuality and socially and emotionally to a physical developing peers, but the emphasis and
disability were rarely paired together body that is likely to be much more teaching strategies need to be different.
in polite discussion. The view was that developed than the rest of their abilities. The “soft skills” and the development
it was not acceptable to discuss sexual- Additionally, these same young people of social judgment ought to be a higher
ity openly. And people with disabilities are included with same chronological- priority than reproductive system infor-
were frequently hidden away and not aged children in schools and social mation. The opportunity for repetition of
mentioned either. Since that time, we activities. They are expected to cope and concepts and rehearsal of the associated
have learned much about the benefit of behave as appropriately as their same- behaviors needs to be built into a safe,
talking about sexuality, and much has age peers without disabilities. When that judgment-free environment where they
changed about how people with a dis- does not happen, schools and families get can effectively practice social, interactive
ability are perceived. together to figure out what to do, but are and relationship skills.
Parents no longer ask, “How can I often at a loss: Everyone wants to include
stop sexuality from developing in my the child with an intellectual disability,
Six Key Components of Meaningful
child with an intellectual disability?” In- but also wants that child to be protected
Sexuality Education
stead we are asking, “How can I help my from making serious errors related to
child with an intellectual disability ex- sexuality, and from being victimized by Social and sexuality education must suc-
press sexuality in a way that is consistent others who may try to take advantage of cessfully address each of the following six
with his or her ability and within the the child’s sexual vulnerability. key components, using teaching strate-
standards of the community in which Colleges and universities typically do gies that are age and ability appropriate.
we live?” A much better question!! not include sexuality education of chil- It must stress the learning strengths of
dren and teens with intellectual disabili- the child and provide opportunity for
ties in the required preparation of special repetition and practice of the social skills
Social/Sexual Development
education teachers, or social workers needed for success. The six components
Sexuality is an inherent and important and psychologists either for that matter. are as follows:
aspect of everyone’s personality and is While special education teachers are well- • Adult Self-Care: Grooming, toileting,
not tied to IQ. However, there are both versed in the aspects of addressing the dressing and accomplishing age-
similarities and differences between how unique learning styles of their students related hygiene and personal care.
typical children’s sexuality develops and and the variety of teaching methods
how sexuality develops among children that have proven successful, they are not • Anatomy and Physiology: Biological and
with intellectual disabilities. equipped, not comfortable, and often not physical aspects of sexual body func-
Physical development of children permitted by their school boards to pro- tions and names, and distinguishing
both with and without an intellectual vide sexuality education to their students. sexual anatomy from other body parts.
disability is quite similar, with puberty Health education teachers are charged • Empowerment: The self-determination
likely to occur earlier than in past with providing sexuality education to and self-valuing that the child is
generations for both groups. Although their typical students and are well internalizing, and the influence that

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Overview 5

child can exercise in determining the interactions in which you see him or planning agency or an advocacy
extent to which he or she can be in her engaged. organization.
charge of life choices. • Learn more about sexuality and
• Use the “teachable moment” as a
• Relationships: Differentiating the social learning opportunity about relation- intellectual disability by reading
boundaries of the various relation- ships and sexuality when watching TV recommended works, and attending
ships that a child is likely to have, and or a movie, or spending informal time workshops by credible organizations
the requirement to adjust his or her with your child. such as Arc chapters, affiliates of the
behavior accordingly in the domains National Down Syndrome Society,
• Participate in opportunities for
of touch, talk, trust and others. Planned Parenthood, Parent Training
parents to review sexuality education
• Social Skills: The ordinary skills of curricula that are being considered and Information Centers, or your
manners and politeness, as well as the by your child’s school district, and/ local college or university.
skills of expressing affection to others or suggest curricula that are already • Work one-to-one with your child to
and welcoming or rejecting affection available for learners with unique practice self-care related to sexual
expressed to them by others. learning styles and special educational maturing, such as during menses,
• Social Opportunity: The kinds of friend- needs. and prepare your child for the chang-
ships, recreation and community • If meaningful sexuality education is es that will happen physically and
participation that are available to each not offered at your school, help your emotionally as puberty advances. Be
child. It must be matched to the social child to access it in other locations in sure to emphasize the social skills
mastery of the child and his or her your area, such as the “Y”, a family associated with private self-care.
degree of independence. It must reflect [Walker-Hirsch, continued on page 35]
the risk tolerance of the child and
family as well as the benefit of that
participation.
Top 10 Reasons Why Age-Appropriate, Meaningful Sexuality Education
is Important for Youth and Adults with Intellectual Disabilities
Parents’ Roles
10. People with an intellectual disability need to have the same information that everyone else has.
What can a parent do to assure that this
kind of meaningful sexuality education is 9. People with an intellectual disability, but without sexuality education, are at a disadvantage in the work-
offered to their child? The following are place, in school and in their community.
some suggested actions:
8. People with an intellectual disability are safer from sexual abuse if they have training in recognizing and
• Be part of your child’s team with reporting sexual encroachment.
teachers and/or professionals to de-
velop a realistic plan for your child’s 7. Even if a person is delayed intellectually, the person’s body, emotions and spirit are probably NOT delayed.
social, educational, and recreational 6. Sexuality education overcomes fears by replacing frightening urban legends with accurate factual
needs. Suggest a Social Development information.
and Sexuality section in your child’s
IEP, IHP or other planning tool. 5. Sexuality education adds to the quality of a person’s life. It is the cornerstone for successful community
• Make sure your child knows that it is employment, mutual relationships and independent community living.
always safe to discuss any aspect of his 4. EVERYONE grows older, but it is more important to GROW UP!! And isn’t that what we really want young
or her life with you without fear that people to do?
you will be punitive, judgmental or
mocking. 3. Sexuality education should not only come from Ms. Lola on the XXX site on the Internet or from Hustler
• Support school-sponsored inclusive magazine.
social events, as well as specialized 2. We live in a sexualized world, whether it is TV, movies, advertisements, the mall, the supermarket…
social and recreational activities, by and even Disney!!! Yet parents are the first and most important influence upon their child’s social and
being an active volunteer. sexual development.
• Be a role model to your child by dem-
1. And the #1 most important reason why people with an intellectual disability need sexuality education
onstrating honesty, respect and appro-
is because: SEXUALITY IS A NORMAL, EXPECTED AND JOYFUL PART OF OUR CULTURE AND OUR HUMANITY
priateness in your own relationships.
AND OUR LIVES.
• Raise your child’s awareness of appro-
priate social behaviors and boundaries © 2010 Leslie Walker-Hirsch. All rights reserved. Reprinted only with author’s permission.
by complimenting positive social
6 Overview

Destination – Adulthood: Preparing Your Child


for Puberty and Adolescence
by Sue Fager

”What’s this about an eruption?” the shy care providers should consider these photocopy in her purse to remind her at
but determined fourth grader asked his questions: school until she has mastered the task.
parents. When it comes to the changes • What information does my child
of puberty and adolescence, misin- already have? Reassuring and Rehearsing
formation and uncertainties abound • What information does my child still
whether one is a youth noticing changes need? Adolescence brings changes for boys, too,
to his or her body or a parent consider- such as spontaneous erections. Some-
ing how to begin talking about it. Con- • How quickly is the information times boys with disabilities who don’t yet
versations about the physical, emotion- needed? know this is a natural part of growing up
al, and social changes that accompany Children should learn about physical think that an erection is related to their
puberty and adolescence can be among changes before they go through them, disability, which can deepen their sense
the most difficult facing parents and with plenty of time to prepare. Strate- of being “different.” One approach par-
youth. This journey to puberty, through gies should be matched with a child’s ents and care providers may find helpful
adolescence, and into adulthood is one preferred learning, information process- for explaining these events and how to
every child will make, including children ing, and communication styles to ensure manage them is to reassure and rehearse.
living with a disability. that the information presented is un- By explaining what spontaneous erec-
While the task of preparing a son derstandable. In the remainder of this tions are, and communicating that they
or daughter for adolescence may seem article are some specific approaches that happen to boys as a natural part of grow-
overwhelming, thoughtful prepara- may be helpful in communicating the ing up, adults can reassure a boy that this
tion and adapting information for the information identified in the plan. is an expected part of maturing. And
specific child can make the preparation through rehearsing they can talk together
easier. Parents and care providers may Using Task Analysis and Story Boards about possible specific situations that
already be using tools and strategies that for Personal Care may occur and explore options for what
can assist with the process. They may he can do to manage them. One example
also find reassurance in knowing that The arrival of puberty brings changes of part of such a conversation is this:
youth consistently say that they want to to personal care routines and the need Son, soon you will be a teenager! As
learn about adolescence from their par- for increased independence in either you continue to grow, you will notice
ents and that their family’s values and carrying them out or in directing the some changes to your body, including
cultural beliefs are important to them. person who will be assisting with them. your penis. You’ve probably noticed
Personal care tasks may consist of many that your penis can become hard
steps that need to be done in a particular sometimes. That’s called an “erection.”
Developing a Plan order – mastering them may prove dif- This is something that’s a natural part
A good first step in preparation is for ficult without support. Task analysis and of growing up for boys. Sometimes it
parents, care providers, and those who story boards are two tools that may be can happen when you are in a public
may be supporting them to ask them- helpful. Task analysis examines a par- place such as at school. Because your
selves the following questions: ticular self-care task and breaks it down penis is a private part of your body
• What do I know? into manageable steps; story boards can and we have rules for how we take care
be used to illustrate each step and then of it, let’s talk about what you can do
• What do I still need to know? posted in a convenient place to act as a when it gets hard at school so that you
• Where can I find more information? reminder. For example, for a girl who can manage it without embarrassing
• Who else can help me? is learning about managing her period, yourself or someone else.
task analysis can be used to break the If you are at school and you have an
Together, parents, care providers, and task of changing a pad down into se-
support teams should decide what infor- erection while you’re sitting at your
quential steps, which can be illustrated desk, one thing you could do is stay at
mation – including family beliefs, values with drawings, photographs or the
and culture – will be shared at each your desk until it settles down. That
symbols used in her communication way no one but you will know what is
developmental stage of the child’s life device. The story board can be placed
and who will share it. Next, parents and happening to this private part of your
in the bathroom and she can carry a body. Can you think of some other

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Overview 7

times when it might happen at school? behaviors that may have been tolerated processing preferences, and reflects their
What else could you do to make sure when they were younger can actually be developmental age.
you’re the only one who knows it’s against the law when they’re an adult. In Starting conversations about pu-
happening at those times? If you want this model, a “1” is very informal social berty and adolescence can feel awkward.
we can practice what you will do when behavior, the ways most people first Everyday occurrences, or “teachable
you get an erection in a public place notice each other. A “2” is reasonable moments,” can be used to expand op-
like school. behavior, the way people act when they portunities for discussions and skill de-
are enjoying each other’s company. A “3” velopment. Underwear ads in magazines
is odd behavior that can make people can provide an opportunity to reinforce
Illustrating Personal Boundaries with uncomfortable. A “4” is scary behavior, public and private concepts by discussing
Circles® Charts like swearing or staring that could get the private parts of the body that are cov-
Skills needed to successfully navigate a person expelled from school or fired ered by underwear and where it is accept-
social interactions change drastically as from a job. A “5” is physically hurtful or able to wear only underwear. Watching
a child matures and can prove difficult to threatening behavior that may result in TV and movies together provides great
acquire. There are societal and cultural going to jail. Using this scale, youth, with opportunities for parents and youth to
expectations of appropriate adult behav- the assistance of their parents and sup- explore the social situations depicted and
ior that youth must master to prevent port team, can examine and rate their discuss how a youth might react if faced
them from making social errors with behavior to understand social boundar- with a similar situation.
potentially serious results. Understand- ies and the unintended consequences of
ing the abstract concepts of personal communication and other interactions.
Preparing Now
space and appropriate intimacy may be
illustrated with a Circles® Chart (a tool One of the greatest gifts we can offer our
Practicing Askable Parenting and
developed by Leslie Walker-Hirsch & children is permission and support to
Teachable Moments
M.P. Champagne, 1993). The chart is a grow up. The parents and care providers
series of concentric circles with a differ- Not every strategy just presented is ap- of youth living with disabilities may find
ent category of relationship assigned to propriate for every child. However, two it difficult to think ahead to their child’s
each circle. The center circle is the youth; that are helpful for every parent and care adulthood, yet doing so is important. Pre-
the next, immediate family members provider include being an “askable par- paring for this journey can help parents
and partners; then personal caregivers, ent” and using “teachable moments.” and care providers feel more comfortable
friends, teachers and other professionals, Being an askable parent means that and confident. Helping youth prepare for
acquaintances, and, lastly, strangers. As your child considers you to be approach- and understand their own journey into
the people in a youth’s life are assigned able and open to questions – even the puberty and adolescence will help them
to different circles, appropriate touching difficult and uncomfortable ones. Par- become fully accepted, fully participating
and hugging rules for each circle can be ents and care providers can take the ini- adults in their community.
reviewed and reinforced. Illustrations or tiative by asking open-ended questions,
Note: Much of the information in this article came from the PACER
photos of specific categories of people truly listening to their child’s response, Center’s Family Advocacy and Support Training project, funded by the
not judging, and engaging in two-way Administration on Developmental Disabilities at the U.S. Department of
can be added to a large copy of a chart to Health and Human Services.
further illustrate the concept. communication that supports a child’s
References
learning. Maintaining a calm demeanor
Buron, K.D. (2007). A 5 is against the law! Social boundaries: Straight up!
is imperative – children learn just as An honest guide for teens and young adults. Shawnee Mission KS: Autism
Using Numbers to Explore Behavior much from how an adult responds and Asperger Publishing Company.
Walker-Hirsch, L. & Champagne, M.P. (1993). Circles, Level 1: Intimacy and
With adolescence comes expectations for what they don’t say. If a parent or care relationships. Santa Barbara CA: James Stanfield Publishing Company.
understanding how one’s actions impact provider cannot answer a youth’s ques-
others and the results of those actions tion, they and the youth can search Sue Fager is a Parent Educator and Transi-
– two very abstract concepts. Teachers together for an answer. Depending upon tion Specialist with the PACER Center, a
Kari Dunn Buron and Mitzi Curtis have the question, parents and care provid- Parent Training and Information Center
developed a series of 5-point scales to ers may need to consult professionals or located in Bloomington, Minnesota. She can
use in helping students understand their representatives from disability-specific be reached at 952/838-9000 or sfager@
emotional responses to situations, create organizations that support adults living pacer.org. She is one of the developers of the
positive behaviors in response, and main- with disabilities. Finally, being askable new PACER curriculum, “The Journey to
tain appropriate social boundaries. In means understanding the information Adulthood: What Parents Need to Know.”
Kari’s book, A 5 is Against the Law (2007), youth need at a particular stage in their For further information about it, visit
the scale is used to teach social behaviors development, and providing it in the http://www.pacer.org, or call 952/838-
and boundaries, and the concept that way that best suits their learning and 9000 or 888/248-0822 (national toll-free).
8 Overview

Parents Talk About Sexuality and Disability:


Highlights of PACER Cross-Cultural Focus Groups
by Julie Holmquist

What are the concerns and information


Attraction to Another • Yes. I have problems establishing
needs of parents of young people with When asked, “Has your son or daughter boundaries.
disabilities when it comes to their child’s ever been attracted to another person?” • My son, who is 14, has started asking
sexuality? In seeking answers to that many parents of older children ac- questions or mimicking other kids
question, PACER Center, a national par- knowledged that their children do show about sexuality and gender differ-
ent center for families of children and interest in the opposite sex. Responses ences. I never thought I would be
youth with disabilities or special health included: speaking to my kids about how to
needs, recently conducted cross-cultural interact with the opposite gender.
• Of course, they just have a disability!
focus groups with parents of youth with
disabilities ages 12-22 to gather their • My son has been attracted to girls
views about sexuality and disability. and describes what he likes about Physical/Sexual Maturity
Through nine focus groups conducted them – their eyes, the way they treat
him. The focus group members were asked,
in 2009, 55 parents of culturally diverse
“How do you view your son’s or daugh-
backgrounds were surveyed in New York • My daughter has said she likes her
ter’s physical/sexual maturity?”All
at Sinergia, Inc./ Metropolitan Parent friend and that he is her boyfriend.
participants of one focus group stated
Center, and in Minnesota at PACER • In school, it causes a great deal of they worked with their family doctors
Center, to gather information for a new problems. and their families concerning this issue.
curriculum addressing sexuality and dis-
• My son likes girls. He wants to touch They all stated that they talked with
abilities titled, The Journey to Adulthood:
them, which is dangerous. their children and they know where
What Parents Need to Know. Taking part
their child’s physical and sexual maturi-
in the focus groups were parents, staff
ty levels lie. Members of the other focus
facilitators, and group recorders rep- Relationship Experience groups offered a variety of responses.
resenting Somali, Hmong, and African
When the question, “Has your child ever While some parents noted that their
American cultures, as well as the cultures
been in a relationship?” was posed, most children weren’t yet sexually mature,
of the Dominican Republic, Honduras,
of the parents said no. Some comment- others were aware that their children
Puerto Rico, Mexico, and Ecuador. Par-
ed that relationships would be likely needed specific information and were
ents answered five questions related to
to cause more problems and expressed already talking with them about
the area of sexuality:
worry that their children would not be appropriate sexual behavior. Some of
• Has your son or daughter ever been able to form relationships. Others asked their other responses included:
attracted to another person? that the term “in a relationship” be de- • All humans are sexual beings.
• Has your child ever been in a relation- fined: One parent stated that “a relation-
• My son worries about looking
ship? ship for my child means ‘going steady,’
good and he knows what has been
• How do you view your son’s or talking on the phone, e-mailing, getting
explained to him. He knows how
daughter’s physical/sexual maturity? to know the other person, or maybe go-
women get pregnant.
ing on dates to the movies on a weekend
• Have you seen or known of people • I’ve prepared my son on the use of a
afternoon.” Many parents said they are
with disabilities who are in relation- condom and appropriate sexual
dealing with other issues and do not
ships? behavior.
think about the relationship issue, while
• What information would be helpful some parents had specific concerns • My son knows that self-touching is
to you? about their child’s relationship with the private. I think he has the emotional
Their responses, which provide a glimpse opposite sex, such as how to help them maturity to be in a relationship.
into parent concerns and information develop appropriate boundaries. Other • In our culture, you don’t talk to your
needs, are presented in the remainder of responses included: kids about having a relationship. You
this article in the form of facilitator sum- talk to them only about getting mar-
• No. They like other people but don’t
maries of group consensus, as well as ried and having a family. However,
go beyond that point.
specific representative quotes. I came to realize that we are not
• Yes. My son has a girlfriend. I don’t
raising our children in our home
like it when he wants her to stay over.

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Overview 9

country. Therefore I changed my way • How disability affects a loving rela- can more easily teach their children
of thinking. I will talk to my kids tionship. about their changing bodies and how to
about relationships and puberty when • To learn more about those who are maintain personal safety.”
they are the right age. married and their lives. The curriculum, The Journey to
Adulthood: What Parents Need to Know,
• How to teach children about sexual
developed based on these focus groups,
People with Disabilities in Relationships predators.
is currently being used in training by
• How to teach children to communicate the 104 Parent Training and Informa-
When asked, “Have you seen or do you
with parents about sexuality issues. tion Centers nationwide as they work
know of people with disabilities who are
in relationships?” many said yes while with underserved and underrepresented
others responded “never.” Most parents parents in their communities. It will also
Conclusion
in two of the focus groups said no. Some be available online in September 2010
parents were afraid that a relationship These focus groups were formed specifi- through PACER Center at http://www.
was beyond their child’s ability and said cally to inform PACER Center as it re- pacer.org.
that a relationship should not even begin. sponded to a need expressed by parents
Note: The curriculum was developed by PACER as part of the National
Responses included: and parent groups across the county for Family Advocacy and Support Training (FAST) Project in collaboration
curricula on this topic. “Discussion of with other parent centers and the FAST Partnership Board. The FAST
project, funded by the Administration on Developmental Disabilities,
• Yes, walking down the street and at a puberty and sexuality can be uncom- U.S. Department of Health and Human Services, helps families of youth
camp my child attended. fortable for most parents, but it can be
with developmental disabilities become aware of and advocate for
family support services as well as influence systems change. Its primary
emphasis is on reaching underserved families from all geographic
• I know of a couple with a child. particularly difficult for parents and care regions in the U.S. and its territories through the network of 104 parent
• I know of a group home where there providers of youth with disabilities,” centers.

are two or three couples including one according to Shauna McDonald, PACER’s
gay couple. Director of Community Resource Devel- Julie Holmquist is Communications
opment. “Parents want to prepare their Director with PACER Center, Bloomington,
• The thought of my child being in a re-
children with disabilities for the changes Minnesota. She may be reached at
lationship concerns me because I don’t
of adolescence, but many are looking for 952/838-9000, 888/248-0822 (national
want him being taken advantage of.
ideas and strategies to help them do this. toll-free) or Julie.Holmquist@PACER.org.
We want to provide resources so parents
Information Needs
In response to the question, “What infor-
mation would be helpful to you?” most Sexuality and Youth with Disabilities: Resources
of the parents expressed interest in work-
shops on sexual education in general • Talking About Sex and Relationships: produced this award-winning video investigating
that would address topics such as how to The Views of Young People with Learning sex and disability. In it they think about the topic
communicate about it, how to deal with Disabilities (http://www.leeds.ac.uk/ from many perspectives by talking with activists
issues of sexual abuse, and other related disability-studies/archiveuk/change/ and scholars. The viewer tags along on a date
issues. One group of parents said they final%20report%20read%20copy.pdf). This between a woman with a disability and her able-
receive enough information from physi- 2009 report describes the findings and research bodied boyfriend as they explore issues in dating
cians and their families and did not need of the Sex and Relationships project at CHANGE, with a disability over a candle-lit dinner. Available
any other information. Another group
a national organization in Britain led by people from Beyondmedia Education in Chicago at http://
was not comfortable with the subject.
The facilitator of that group stated: “Even with disabilities. Done in partnership with the beyondmedia.org or 773/857-7300.
though they were answering the ques- Centre for Disability Studies at the University of • The Rules of Sex: For Those Who Have Never
tions, I could clearly see by their reaction Leeds, this project inquired about the views and Been Told. By N. Baladerian, PhD & J. Nunez. This
that they did not believe their children experiences of young people with intellectual book, available in print or as a PDF, is written with
had a good chance of having a normal disabilities (referred to as “learning disabilities”) and for individuals who have never had a concrete
life. Also, paying attention to a child’s in the area of sex and relationships using drama description of “the rules of sex,” and may get or
personal growth is not part of the cul- work, interviews, focus groups, a national
ture.” Other responses included: may already have gotten in trouble just for lack of
survey, and review of education resources. information. Written for young adults. Available
• How not to have fear about talking • Doin’ It: Sex, Disability and Videotape. in English and Spanish from the Disability, Abuse,
about sex to my kids.
The Empowered Fe Fes, a peer group of young and Personal Rights Project of Spectrum Institute
• How to talk to girls about their first women aged 16-24 with different disabilities, at http://www.norabaladerian.com/books.htm.
menstruation.
10 Profile

Becoming a Woman: Teaching Healthy


Sexuality to My Daughter
by Terri Couwenhoven

I think one of the most important things being a “regular kid” (her words not developmental benchmarks or acted ap-
related to helping my daughter grow mine). This was difficult, really difficult. propriately as she moved through these
into a sexually healthy adult has been I wanted her to grow up proud of who stages, but my job as a parent has been
figuring out how to help her feel good she was, including feeling okay about to prepare, educate, facilitate, and iden-
about who she is as a human being. This having a disability. Besides, isn’t lov- tify her needs for support as she devel-
sounds easy, but really is and was quite ing yourself the foundation for healthy oped and matured in the same way her
challenging for us. Let’s face it, for the sexuality in adulthood?
most part our society values intelligence, The work and support required to
outer beauty, speed, and efficiency. Just help her feel good about herself began
count how many times in a day other in pre-adolescence and required many
people talk and brag about how intel- discussions about her disability, help-
ligent, brilliant, “advanced” or “high ing her understand Down syndrome
functioning” their babies, kids, teens or and how her disability affected her
other adults are – it will amaze you. As uniquely, and offering strategies that
much progress as we’ve made integrating would help her in life. My work (eventu-
people with intellectual disabilities into ally her work) involved identifying gaps
the world, we have a long way to go. We in knowledge and skill levels that would
help her become more socially appropri-
ate so she was more accepted, as well as
helping her figure out how to have an peers did. Thinking about her this way
I think one of the most important active social life. It became clearer to has helped greatly. I have noticed that
me in adolescence that her peer group when I think about her chronological
things related to helping my would be other teens with disabilities. age, treat her that age, and have expecta-
Exploring clubs, activities, and groups tions for that age, she has grown and
daughter grow into a sexually where she could belong and feel good matured in ways I never imagined. She
became a part of the process. I began to surprises me often. Her developmental
healthy adult has been figuring realize that she needed to have meaning- age helped me understand how to adapt
ful connections with others and to feel and modify messages and teaching so it
out how to help her feel good about like she belonged to something outside would be more useful and understand-
of the family. The older she became, the able, but otherwise it was irrelevant.
who she is as a human being. more she became my guide on what she Teaching sessions about sexuality
needed to feel okay about herself and and relationships have evolved over the
her disability. The road was bumpy, but years in a variety of ways. The younger
in her adult life she is pretty proud of my daughter was, the briefer, simpler,
must not forget that the experiences our who she is and has become. and more concrete the rules. For ex-
sons and daughters have living life with a The other idea that’s been impor- ample, rules about who she could talk
disability are not the same as ours. They tant related to sexuality is thinking of to about her periods were very specific
are stared at, talked to differently, treated my daughter in her chronological age vs. (her teacher and me). Or understanding
younger than their same-aged peers, and developmental age. I have noticed that the appropriate level of affection when
often discretely ridiculed when we’re not regardless of her cognitive disability, greeting someone new (a handshake vs.
around. This influences and shapes self- Anna has been pretty much on track a bear hug) required sharing a simple
esteem in such a dramatic way that we with most everything related to sexual- rule, some role modeling, then her prac-
can’t just pretend our sons and daugh- ity: physical development, experiencing ticing in a variety of social situations.
ters are “just like everyone else.” Anna sexual feelings and crushes, her desire to Now, as an adult, the topics are more
figured this out way faster than I did and date and have a boyfriend, and current complex and the rules aren’t always so
her experiences manifested in her not aspirations to have a serious, long-term simple. For example, understanding
wanting to have Down syndrome at one relationship as an adult. She hasn’t how to determine if a relationship is
point in time. She told me she preferred always understood how to manage these healthy or exploitative not only requires

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Profile 11

teaching, but also an ability to make deci- their own way and will likely need camp overnight and spend time with
sions and problem solve. guidance understanding social rules my friends when I could take a shower
The other change in teaching has been and relationships on their own time by myself.”
that the content has changed from what schedule, not only when you’re ready. • How have our teaching talks changed?
I think she should know to more self- • One discussion or teaching session is “My mom was an excellent teacher
directed topics. A short time ago Anna never enough. Learning and under- and now she is my coach.”
asked me, “Am I old enough to date?” standing what it means to be a sexual
(she was 20 at the time). I said, “Yeah, • What lessons have you learned? “I have
human being is a complex, life-long learned to do the right thing. I have
you’re old enough to date.” She stated process. One teaching session, ex-
she was glad and then named the person made mistakes. Now I know how to
perience, or “talk” is inadequate. behave myself, act appropriate so
she wanted to start dating. She decided Our sons and daughters need lots of
what she wanted to learn and figure out people aren’t embarrassed to be
opportunities to learn and practice around me. If you need help or are
related to dating. It seems to have be- skills, ask questions, make mistakes,
come more self-initiated, which indicates not sure what the rules are ask some-
and have people in their lives who are one for help.”
she is understanding her rights to infor- willing and open to address sexuality
mation about sexuality. issues. Your ability to be “askable”
In adolescence and into adulthood, I and provide coaching throughout life Terri Couwenhoven is a certified sexuality
have found teaching/information provid- is a gift we can give all of your sons educator for people with disabilities and
ed by another adult can be helpful, pow- and daughters. the parents and professionals who support
erful and impactful. Our kids are similar them, and is based in Port Washington,
to other kids in that they tire of us being For this article I asked Anna what’s Wisconsin. She is author of the award-
the teacher all the time. Having another been most important to her as we’ve winning book, “Teaching Your Child with
skilled professional share information in talked about sexuality over the years, her Down Syndrome About Their Bodies,
understandable ways, especially in ado- view of how those talks have changed as Boundaries and Sexuality: A Guide for
lescence and adulthood, can be beneficial she’s grown up, and important lessons Parents and Professionals” published by
and refreshing. Repetitive messages from she’s learned along the way. I’ll close Woodbine House. She may be reached at
multiple sources is always a good thing. with her responses: 262/284-5043 or tcouwen@execpc.com.
As parents we have learned so many Anna is a self-advocate with Down syn-
• What’s been important? “I’ve learned drome. She works in the community, enjoys
things raising Anna and my other daugh-
a lot growing up, but I think learn- participating in summer theatre, listening
ter, but here are some of the lessons I
ing how to take care of my body by to music, dancing, writing, and hanging out
keep coming back to:
myself was important. I got to go to with friends.
• You don’t have complete control over
how and when your son or daughter
learns about sexuality. I used to tell
myself, “I really should set up my
Teens and Sex Today • The condom was reported as the most commonly
laptop and create a presentation on used method of contraception among sexually
A June, 2010 report titled “Teenagers in the experienced teen females; the second most
relationships and boundaries because
she needs some help with that.” And United States: Sexual Activity, Contraceptive Use, common was withdrawal, and third was the pill.
then naively think that Anna’s needs and Childbearing” provides a thought-provoking
• Among both female and male teens who had not
would wait until I was ready to share snapshot of some of the sexual attitudes and
behaviors of teens. While the report, published yet had sex, the most common reason for not yet
the information. It became clear
to me, however, that learning from by the National Center for Health Statistics, does having done so was that it was “against religion
peers, television and other sources not specifically discuss teens with disabilities, it or morals.” The second and third most common
was a daily event and incredibly in- does describe part of the social context in which reasons were avoiding pregnancy (second for
fluential. Watching her same-aged females, third for males), and waiting for the right
all teens are growing up. Among the findings of
peers flirt and incessantly talk about person (second for males, third for females).
boys, and her repeated exposure to the research conducted in 2006-08 were:
the sexual innuendoes on television • 42% of never-married females and 43% of • 58% of never-married females and 47% of never-
(yes, even on the Disney channel!!), never-married males aged 15-19 had engaged married males reported they would be “very upset”
were contributing models for social in sexual intercourse. if they got pregnant /got a partner pregnant,
behavior whether appropriate or not. while 14% of females and 18% of males would be
If your child is out in the world expe- • The most common first sexual partners were
“a little pleased” or “very pleased” if they got (a
riencing life (hopefully they are), they someone with whom they were “going steady.”
will begin to interpret their world in partner) pregnant.
The second most common was someone they
just met; this was more common for males. The full report, published by the National Center for
Health Statistics, is available at http://www.cdc.gov/
nchs/data/series/sr_23/sr23_030.pdf.
12 Overview

Sexual Expression for Adults with Disabilities:


The Role of Guardianship
by Robert D. Dinerstein

For adults with disabilities, as for other guardianship law nationwide (as there is especially with adults of the opposite
adults, the desire to enter into intimate in other countries), but rather 51 guard- sex, historically were extremely limited.
personal relationships, including sexual ianship laws (the 50 states plus the However, as more and more individuals
relationships, is one of the most pro- District of Columbia) (Dinerstein, have left institutions, or avoided them al-
foundly personal rights there is. As The 2006). Nevertheless, there are certain together, and as societal attitudes toward
Arc and the American Association on national trends in guardianship law, aid- the importance of sexual expression for
Intellectual and Developmental Dis- ed by such influential resources as the adults with disabilities have evolved,
abilities state in their Position Statement Uniform Guardianship and Protective the balance between sexual expression
on Sexuality, “People with intellectual Proceedings Act of 1997, which many and protection from abuse and coercion
and/or developmental disabilities, like states have adopted in one form or an- has become both more complicated and
all people, have inherent sexual rights. other (National Conference of Commis- more salient.
These rights must be affirmed, defended, sioners on Uniform State Laws, 1997). Today, the landscape of guardian-
and respected” (The Arc & AAIDD, Traditionally, guardianship in the ship has changed significantly as a result
2008). That desire is no less important U.S. was an all-or-nothing affair within of exposés in the media, congressional
the realm it functioned; that is, a guard- investigations, and developments in the
ian of the person was a general or plenary fields of law, developmental disabilities,
surrogate decision-maker over almost mental health and gerontology. Many
To what extent does or should all aspects of an individual’s life, includ- state statutes emphasize that guardian-
ing residential, medical and lifestyle ship should not be used unless it is the
having a guardian limit an domains, while a guardian of the property least restrictive means to protect the
would be in control of all financial as- interests of the allegedly incapacitated
adult’s ability to fashion intimate pects of the life of the individual with person. Indeed, many policymakers and
disabilities. Capacity – more usually advocates increasingly argue, in the
relationships of his or her choosing? called competency – was also thought to U.S. and abroad, for supported decision-
be all or nothing; one either had legal ca- making rather than the surrogate or sub-
pacity (or was competent) or one did not stitute decision-making that characterizes
(or was not competent), and if one did guardianship (United Nations, 2006). We
for the many adults with disabilities who not, he or she needed a guardian to sub- now understand capacity to be contextual
are under some form of guardianship. stitute as a decision-maker. Such a legal (decision-dependent as well as individual-
To what extent does or should having regime, in theory, maximized protection dependent) and potentially fluid; a per-
a guardian limit an adult’s ability to of the allegedly incapacitated person son without capacity in one realm (e.g.,
fashion intimate relationships of his but had the distinct disadvantage of health care decision-making) may well
or her choosing? The answer for many undermining the autonomy of the indi- have capacity in another (e.g., decision-
people with disabilities is that, as a mat- vidual. Plenary guardianship was a kind making about residence), and a person
ter of law, guardianship need not limit of “civil death” in which the individual without capacity today can receive train-
the adult’s right of sexual expression lost all rights to make the kinds of deci- ing and be exposed to experiences that
and conduct, but dialogue between the sions that adults typically make in our will enable him or her to have capacity
individual and his or her guardian can society. In practice, guardianship could tomorrow (Dinerstein, Herr & O’Sullivan,
play a critical role in supporting the indi- be even worse, in that some guardians 1999). Less formal alternatives to guard-
vidual’s decision-making in this area. (especially for elderly individuals) either ianship, such as durable powers of attorney
Guardianship is a form of legal ignored their wards or took advantage and health care proxies, are preferred to
relationship in which a court appoints of them financially or otherwise. guardianship and should be explored and
an individual (called the guardian or con- Sexual and intimate relationships appropriately rejected before turning to
servator) to protect the person or prop- were included within the kinds of rela- guardianship at all. Even if guardianship
erty of an individual (called the ward tionships over which plenary guardians is appropriate, courts and parties are
or the allegedly incapacitated person). In exercised control. Of course, for adults urged to examine whether alternatives
the U.S., guardianship has always been with disabilities in institutions, op- to plenary or general guardianship –
a creature of state law; there is no one portunities to have intimate relations, such as emergency, temporary or limited

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Overview 13

guardianship – may provide sufficient guardian shall acknowledge the ward’s kinds of romantic relationships, like a
protection for the interests of the alleg- right to interpersonal relationships hand-holding relationship, the level of
edly incapacitated person while increas- and sexual expression. The guardian risk is so low that relatively little capacity
ing the amount of autonomy and deci- must take steps to ensure that a ward’s or knowledge is needed, and a plenary
sion-making authority he or she retains. sexual expression is consensual, that or limited guardian should have no or at
Limited guardianship, in particular, the ward is not victimized, and that an most a limited role in decision-making.
has much to recommend it, because environment conducive to this expres- For more involved relationships, such
under limited guardianship arrange- sion in privacy is provided.” Standard as one that includes sexual intercourse,
ments, the only decision-making rights 10-II.E. goes further in requiring that the concerns about capacity, knowledge, and
that the person loses are those that a guardian “shall protect the rights of the absence of coercion become more critical
court explicitly identifies in the order ward with regard to sexual expression.” (Stavis & Walker-Hirsch, 1999). But those
appointing the limited guardian. Under Even in situations in which the guard- concerns do not mean that it should be
a limited guardianship, the lawyer for ian makes a specific decision about the the guardian’s decision whether the alleg-
the allegedly incapacitated person (the allegedly incapacitated person’s sexual edly incapacitated person should have a
adult with a disability) can make sure relationships, under general principles sexual relationship with another. Rather,
that the individual retains the right to of guardianship law the guardian is sup- whether the guardian is plenary or lim-
make decisions about sexual relation- posed to use the standard of substitute ited, the better approach is for the guard-
ships, birth control, and other intimate judgment – that is, the guardian should ian and person to discuss such issues as
matters. Even if the right is not explicitly make the decision that he or she believes the nature of the relationship, the pros
retained for the individual, the lawyer the incapacitated person would make and cons of entering into it, the person’s
for the individual can insist that the if he or she had the capacity to make knowledge about the acts involved, the
limited guardian not be given authority it – rather than a best interests standard importance of protecting one’s bodily
within this area; the absence of explicit (what the guardian thinks is best for integrity and autonomy, and the ability
authority for the guardian would mean the incapacitated person) or a standard to change one’s mind if circumstances
the individual would be able to make based on what the guardian would change. Whether parent, friend, limited
decisions about intimate relationships. choose for him or herself. This guardian- or plenary guardian, or provider of sup-
States such as California, New York, and ship best practice is especially important ported decision-making, the person with-
Vermont, for example, go further and given the personal nature of the rights out a disability can play a critical role in
specifically recognize in their statutes or involved for the adult with a disability. helping the adult with a disability to have
regulations that the incapacitated person Listening to the incapacitated person meaningful relationships that promote
retains decision-making rights regarding is especially critical because even if a happiness while avoiding untoward risk.
sexual and social relationships unless a court determines that the adult with
References
court orders otherwise (and sometimes a disability does not have sufficient Arc of the United States & American Association on Intellectual and De-
not even then). capacity on his or her own to make the velopmental Disabilities (2008). Position statement on sexuality. Retrieved
6/30/10 from http://www.aamr.org/content_154.cfm?navID=31.
What if the adult has a general or ple- decision involved, the individual will un- Dinerstein, R. D. (2006). Guardianship and its alternatives. In Pueschel, S.
nary guardian (because notwithstanding doubtedly be able to have some opinion (Ed.), Adults with Down syndrome (pp.235-258). Baltimore, MD.: Paul H.
Brookes Publishing Co.
the preference for limited guardianships, about the decision and process some of Dinerstein, R. D., Herr, S.S., & O’Sullivan, J.L. (Eds.) (1999). A guide to
many potential guardians still seek, and the relevant information. Even adults consent. Washington, D.C.: American Association on Mental Retardation
[AAIDD].
obtain, plenary guardianships) – is the with disabilities who cannot communi- Field, M.A. & Sanchez, V.A. (1999). Equal treatment for people with mental
adult unable to make decisions in the cate verbally can demonstrate through retardation. Cambridge, MA.: Harvard University Press.
their nonverbal conduct that they want National Conference of Commissioners on Uniform State Laws (1997).
area of intimate relations? Even in this Uniform Guardianship and Protective Proceedings Act of 1997. Retrieved
situation, the adult with a disability to have a close or even intimate relation- 4/13/10 from http://www.nccusl.org/nccusl/uniformact_summaries/
uniformacts-s-ugappa97.asp.
retains important rights. Because of ship with another person, for example, National Guardianship Association (2007). Standards of practice. Retrieved
the highly personal nature of the right by going into a bedroom together to 6/30/10 from http://www.guardianship.org/pdf/standards.pdf.
seek privacy. Stavis, P.F. & Walker-Hirsch, L. (1999). Consent to sexual activity. In
of intimate association, many argue Dinerstein, et al., A guide to consent (pp. 57-67). Washington, DC:
that the allegedly incapacitated person Ultimately, the key question is American Association on Mental Retardation.
whether the adult with a disability can United Nations (2006). Article 12. Convention on the Rights of Persons with
must retain the right to make decisions Disabilities. Retrieved 6/20/2010 from http://www.un.org/disabilities/
regarding, for example, whether to use make an informed decision, or give default.asp?id=259.

birth control and what method (Field & informed consent, to the relationship or
Robert D. Dinerstein is Professor of Law,
Sanchez, 1999). The influential National activity being contemplated. Informed
Director of Clinical Program, and Director
Guardianship Association Standards consent requires capacity to make the
of the Disability Rights Law Clinic at
of Practice (National Guardianship decision; knowledge about the decision;
American University, Washington College of
Association, 2007) provide, in Standard and absence of coercion (or voluntari-
Law, Washington, D.C. He may be reached at
10-II.A., Sexual Expression, that, “The ness) (Dinerstein, et al., 1999). For some
202/274-4141 or rdiners@wcl.american.edu.
14 Profile

The Story of Robert and Julie


by Rabbi Norman Cohen

From a religious perspective, it is always joy, life cycle rituals are opportunities everyone who was there, we were all
important to ask, “What does God to take account of life’s richness and moved by their affection and caring
want?” Not that we have the ability to our human ability to enhance those mo- for each other. They held hands, and
answer without doubt, but as people of ments to their greatest potential. This is smiled constantly. She wanted to study
faith we can keep that in mind as a guid- something that should have no asterisk about Judaism so that they could have
ing principle for the decisions we make for a person with a disability.
and the values we seek to live out. I have been privileged to serve a
As we wonder about the blessings of congregation for nearly three decades
life, including companionship, sexuality, in which we have, in numerous ways,
and lifelong commitment, we have to sought to live out a commitment to in-
ask, “Are those blessings reserved only cluding children and adults with disabil-
for a select group or are they universal ities in all areas of congregational life.
goals and privileges to which all, to the But it was not until seven years ago that
extent of their abilities, are entitled?” I I had the opportunity to be involved in
believe that we must look for ways to ex- a situation that has remained embedded
tend these opportunities to all of God’s in my mind and heart as one of the most
creation to the extent that it is possible. significant personal interactions I have
That is where religious organizations been blessed to have in my rabbinate.
and institutions can provide assistance Robert, a man in his 40’s who has de-
and attitudinal influence not only to velopmental disabilities, had been part
individuals with disabilities, but to those of our community for many years. His
who live with them. sister and brother-in-law belonged to
our congregation and his parents, who
live in another city far away, had made
arrangements for him to be part of our
Nothing could match the excitement community. He would come and visit even more in common. Most important
me from time to time, attend services on to her was to have her own “Hebrew
and enthusiasm he felt on the day occasion (much like most congregants!), name,” her official connection.
and would make special visits to share They started coming to services and
he walked into Temple to tell me he significant moments in his life, such as classes frequently, always sitting in the
when he got a job or won a medal in the front row so that they could have a good
had met someone very special. Special Olympics. He was so proud of view of things, and the rest of the
those medals and the sports in which he congregation noticed them and reached
had engaged to win them. He was filled out to them at our post-prayer gather-
The path of life presents all of us with enthusiasm every time he started ings of conversation and food (we are a
with opportunities to pause and take a a new job. His life was filled with bless- Jewish community, after all!).
photograph that enters our life album. ings, in spite of the fact that he faced I will always remember the day they
These pictures are only moments but severe challenges every day. He definite- came to talk with me about getting mar-
they can mean so much more when we ly struggled, but he had a perseverance ried. I must admit that because of my
see them as markers of our growth and that enabled him never to give up and own preconceived notions, prejudice,
transition, which is, bottom line, what inspired others around him as well. and ignorance I wondered whether this
life is. Judaism has long recognized that But nothing could match the excite- was possible. Should people in such
the ceremonies and rituals in which we ment and enthusiasm he felt on the day situations get married? In truth, I must
engage are tremendously wise ways to he walked into Temple to tell me he had have thought: Is this too much for me to
help us pause and savor each of those met someone very special. Her name handle?
moments. Indeed, they teach us that was Julie. She worked at the same place In spite of that, I proceeded. As I do
every moment in life has the potential as he did and they had taken a liking to with all couples, I invited them to meet
for holiness and sacredness. From birth each other. One thing led to the next with me privately in my study and we
to death, from the significant milestones and they were in love. When he brought began a long discussion that led to inter-
we pass to the sharing of our grief and her to the Temple to introduce her to action with their therapist, a wonderful,

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Profile 15

caring person who proposed a plan for They continued to come to services
Resources on Faith
the four of us to meet in pre-marital ses- and always sat in the front, eager to come Communities and Individuals
sions to set goals and carefully consider up to the pulpit afterward and talk with
each step along the way. We arranged for me, reminding me that this was the spot with Disabilities
them to spend longer periods of time on which they stood when they married.
• Caring Relationships: Helping People
together to see if they could manage We clergy often talk about the power of
what they dreamed of. They each had ceremony and ritual and how they can with Mental Impairments Understand
helpful social workers and aides who serve through recall as sustenance. This God’s Gift of Sexuality. By R. C. Vredeveld.
visited with them to offer appropriate as- was the clearest example of that. Written from a Christian perspective, this
sistance and guidance. They sought from They loved going on car trips and book includes chapters on sexuality in
us and received approval. travelled together, she reading the map relation to the Bible, the dimensions of caring
This couple was just like every other and signs, he driving. Together they were relationships, sexual abuse, marriage, and a
couple in so many ways. They wanted a fabulous team. To celebrate their first model for support that faith communities can
to make their marriage just right. They anniversary, they had made arrange-
use with married couples who have cognitive
wanted to please the other. They wanted ments to have a special anniversary
to support one another. They glowed. dinner, go swimming, and spend the disabilities. Published by CRC (Christian
They held hands and were very comfort- night at the hotel where they had their Reformed Church) Publications and distributed
able being appropriately affectionate in wedding party. Their bags were packed by Faith Alive Resources (http://www.
public. When we met, they were eager to early in anticipation. In their excitement faithaliveresources.org) and other booksellers.
talk about what they did when they were they decided to go out for ice cream early • Friendship Ministries (http://www.
together. They each had their respon- in the morning of their big day. Tragi-
friendship.org). This interdenominational
sibilities and together made a comple- cally, on that morning their bliss ended.
mentary team in facing their daily tasks. It was not because of a failure in their ministry helps equip churches to include
They had their lists. There was a kind of ability to maintain their relationship and people with intellectual disabilities. One model
innocent joy that all couples seek in their caring, but in a terrible car accident in it offers is the Friendship program, a ministry
love, but it came so naturally to them. which they were hit by a driver under the with people who have intellectual disabilities
They were as happy as any couple I have influence. Julie was killed. After only one that congregations can implement. Friendship
ever known or married. year of marriage Robert lost his beloved. Ministries provides the help needed to start
On Memorial Day 2004, at Bet They had worked so hard to achieve their local Friendship groups and materials to use in
Shalom Congregation in Minnetonka, goals and had created what could only be
the weekly gatherings that bring people with
Minnesota, Robert and Julie stood called a marriage filled with blessing and
under the chuppah, the decorated canopy joy. Their marriage was, in my opinion, intellectual disabilities and mentors together
that symbolizes the Jewish home that a exactly what God wants. for social and spiritual nourishment.
Today, I often think of Robert and • The Jewish Community Guide to
Julie when I meet with any couple con- Inclusion of People with Disabilities.
On Memorial Day 2004, at templating marriage. Sometimes I wish By S. Christensen. This book provides a
for every couple with whom I counsel
framework and strategies for use by any
Bet Shalom Congregation, the simplicity of the love and caring that
Jewish organization seeking to include indi-
this couple so innocently and lovingly
viduals with disabilities in all aspects of
Robert and Julie stood under the bestowed upon each other. Most of all
congregational and organizational life. It’s
I think of what a difference a religious
chuppah and celebrated with institution and its leaders, clergy and published by the Minneapolis Jewish Inclu-
laypeople alike, can make in fostering sion Program for People with Disabilities, a
their family and friends. attitudes and extending outreach and program of Jewish Family and Children’s
support to all of God’s creation, serving Service of Minneapolis, and available at http://
as God’s partners in extending God’s
www.jfcsmpls.org/pdf/inclusionordernew.pdf
blessings of love and joy to anyone who
couple establishes on their wedding day, has the ability to experience them. or 952/542-4838.

and celebrated with their family and • Religion and Spirituality Division of the
friends, many of whom, because of their Rabbi Norman Cohen of Bet Shalom American Association on Intellectual and
own disabilities, had never been invited Congregation, Minnetonka, Minnesota may Developmental Disabilities (http://www.
to be a bridesmaid or groomsman be- be reached at 952/933-8525 or at Rabbi. aaiddreligion.org). On the division’s Web
fore. Never have I witnessed such pure Cohen@BetShalom.org.
site are extensive resources from around the
joy, love, and happiness.
country related to spirituality and inclusion in
faith communities for people with disabilities.
16 Profile

Finally, Acceptance
by Carol Ely

I must have been about 13 years old with my disability for the long haul, the I didn’t think about a long-term relation-
when I first started wondering if anyone answer was NO. Of course that hurt a ship colliding with something I’m now
would ever find me attractive enough lot, so I made the decision not to have very familiar with: aging and disability.
to want to see me in a romantic sense… another romantic relationship at all. We were about four years into our
hearts, flowers, etc. I found out what It turned out that resolve lasted quite relationship when I began to notice that
everyone does: some yes, some no. awhile – for nine years. After awhile I no it was taking me longer to do things that
I certainly didn’t plan it one way or longer thought about it one way or an- didn’t used to take much time. I used
another, but with the exception of one other, it just was. The women in my fam- to be able to get in and out of bed and
person (my first love who had multiple ily who were closest to me believed that into my chair smoothly and efficiently.
sclerosis) the “romance” in my life has if you look for something you’ll never
come from men who don’t have a dis- find it, including a man. So I subscribed
ability. I’d heard the question of “dis- to that theory too, although I also felt
ability or no disability” go both ways. that looking would be pointless and the
Some people in my life felt that I should result the same as before.
only date men who had one, thus elimi- One day I met David, a man without
nating the need to explain mine. Other a disability, who started talking to me
friends thought it better to date some- when I was finally comfortable enough
one who didn’t have one, so that I could to let someone get past, “Hello, how are
you?” I had also ventured into unknown
territory for me; we are from different
ethnic groups. We had general conver-
Since I’m older than he is I wondered sations over a period of about three
months, with me looking forward to
if I was going downhill so fast that them a little bit more each time. I began
to wonder if he was ever going to ask me
he wouldn’t stick around. He always out or not. (I thought he was taking an
incredibly long time to say something!)
came back with some version of, Finally, the day came and I did a little
wheelchair happy dance in the privacy
“I’m still here, aren’t I?” of my apartment.
At this point it’s important to me However, after another year or so it took
to mention that when we met about 10 30 to 35 minutes on some days. During
years ago my disability posed few chal- the easier years, I used to be able to go
be with someone who drives, or not have lenges in terms of being able to do most from being showered to dressed in about
the hassle of dealing with two pieces of of my personal cares independently, the same amount of time; eventually
mobility equipment. There is no doubt though I did have a home health aide I had to start getting up between 5:00
that the argument can go both ways. who came in to clean my apartment, do and 5:30 in order to be ready to leave for
In my 20s and 30s I had a couple of my grocery shopping, and help with a work by 8:00 in the morning. However,
female friends without disabilities who few daily living activities. So, I had quite even that didn’t work after awhile and
would call and offer to pick me up so a lot of time when I was available to see more often than not I wasn’t ready to
that we could go out for drinks, a movie him at home without having to be con- go when my ride came to pick me up
or wherever the night took us. At that cerned about anyone else being around. in the morning. Now, the home health
point in life I did want to date a man Of course it never occurred to me that aide who for a number of years had to
without a disability; I thought it would my needs would change as I aged. Or help me with only a few personal cares
be easier logistically. Unfortunately, as that those changes would mean that I was needed to get me in and out of bed
a young adult, the couple of times that would need personal care assistance. and dressed in the morning. That was
I cared for someone enough to think However, because of past experience, a big step down in the way I felt about
about taking the steps to marriage, I I still thought he’d only be around for myself. I was used to feeling strong and
learned that when it came down to the a month or two and then disappear independent.
question of whether or not he could deal because of my disability. Consequently,

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Profile 17

There was no denying that my physi- which has always been high on the list since it is, I’ve learned a few things along
cal capabilities were undergoing a drastic for both of us. We talked a lot on the the way:
change. But one thing in my life remained phone though, and I waited for the “this • Long-term relationships of any kind
consistent: David. When I talked about isn’t working for me anymore” conversa- mean that you should think before
the things I couldn’t do anymore he tion…but it never came. As I regained you speak.
reminded me that there were aches and my strength after surgery, it was clear
that we were both waiting for the day • Not everyone says “I love you” in
pains that he had now that he didn’t have
when closeness was on again. words all the time.
when we met either. Since I’m older than
he is, I wondered if I was going downhill So, where are we now? In a place • For some people looks and the chang-
so fast that he wouldn’t stick around. He where we both realize (especially me) es that come with aging really are a
always came back with some version of, that aging is inevitable and that doing superficial thing.
“I’m still here, aren’t I?” it with a disability brings even more • When environmental, physical and
Then came the “big test,” at least as far challenges. However, along the way I’ve physiological things change and
as I was concerned: I had to have major also learned to speak up about the kind you still love, respect and want to be
surgery. Thankfully, I didn’t realize how of support that I need from him and together (most of the time, anyway,)
much postoperative pain there would be how to ask for it in a way that respects that’s success.
beforehand or I would have been terri- that even if he’s not overtly romantic,
fied. What followed was weeks of recu- he understands that sometimes hearing Carol Ely is Community Program Specialist
peration and selected visitors, though something like, “For any man that hasn’t at the Institute on Community Integration,
he wasn’t one of them because I felt and known you it’s his loss” goes a long way University of Minnesota, Minneapolis.
looked like I’d been in a train wreck and with me. She may be reached at 612/626-3346 or
I didn’t feel like I wanted to see him. Of I didn’t think this would end up elyxx021@umn.edu.
course this meant no intimacy either, being a long-standing relationship, but

Sexuality and Adults with Disabilities:


Resources Supporting Dating, Marriage, and Parenting
• The Riot! Healthy Relationships Issue • Parents with Disabilities Online (http:// • Disaboom (www.disaboom.com). This Web
(http://www2.hsri.org/docs/Riot_Issue_23. www.disabledparents.net). Created by site for people with disabilities includes a number
PDF). The January 2010 issue of this national Trish Day, a mom with a disability, this Web site of articles by individuals with disabilities about
e-newsletter by and for self-advocates focuses includes extensive resources for parents with their experience planning a wedding when the
on intimate relationships. It is published by the disabilities, people with disabilities who are bride/groom uses a wheelchair (among them are
Self-Advocate Leadership Network at the Human planning to become parents, and nondisabled “Do-It-Yourself Wedding Planning for the Bride or
Services Research Institute, Portland, Oregon. partners of parents with disabilities. It includes Groom in a Wheelchair” and “ Wedding Planning
information on pregnancy and reproductive Tips for Wheelchair Users”).
• Love Rolls On (http://www.loverollson.
health, adaptive/adaptable parenting products, • Parenting with a Disability Network (http://
com). Loves Rolls on is a Web site created to
organizations, and toys, as well as stories by and www.cilt.ca/parenting.aspx). The network,
inspire, educate and provide an insight into
an e-mail community for parents with disabilities. based at the Centre for Independent Living in
inter-ability relationships where one partner has
a disability. It is operated by husband and wife • Healthy Relationships and Safe Sex – Tips Toronto, is a peer support and information-sharing
Barton and Megan Cutter, and includes a blog, for Self-Advocates. By Joe Meadours. This hand- network for parents and prospective parents with
articles, resources, and events. book, written by Joe Meadours, an accomplished a disability. On its Web site are numerous resources
self-advocate from Alabama, teaches people with ranging from parenting publications on different
• Quality Mall (http://www.qualitymall.org). life stages of children, to information on adaptive
disabilities how to have healthy friendships, ro-
Through a keyword search on this Web site over baby care equipment, to guidance for service
mantic relationships and safe sex. Available from
150 resources on dating, sexuality, and marriage providers in offering nurturing assistance for
The Riot Store at http://www2.hsri.org/leaders/
in relation to people with disabilities can be parents with disabilities.
theriot/store.html or 503/924-3783, ext. 24. Also
found. This national clearinghouse is operated by
available from the store is the CD of the Healthy
the Research and Training Center on Community
Relationships Teleconference Series.
Living, University of Minnesota.
18 Overview

A Sexuality Policy That Truly Supports


People with Disabilities
by Perry Samowitz

It is now over a decade since Professor any hope of social/sexual fulfillment Agencies Need a Social/Sexual Policy
T. Robert Ames (deceased) and I wrote a or, when possible, to surreptitiously In order for an agency that serves people
scathing editorial in the AAIDD newslet- seek partners and moments of grati- with ID/DD to provide the necessary
ter blasting the field for not effectively fication in dangerous, unlawful and supports for the social and sexual
dealing with the sexual needs of people degrading situations. (Ames & dimensions of life, there needs to be a
with intellectual and developmental dis- Samowitz, 1999) written social/sexual policy that clearly
abilities (ID/DD). We wrote: states the agency’s philosophy and how
What has changed in the decade since
…there remains, for the vast major- it is specifically going to be implemented
we wrote that article? Recently I was at a
ity of people with ID/DD, a major by staff. Without a written policy, each
meeting with a number of psychologists
area of deprivation and inequality, staff member could theoretically impose
and other staff members from a state
a lack of opportunity, choice, and his or her values on people with ID/DD.
system who said that they did not want
the inherent right to develop and Imagine the confusion for a person with
the mentioning of sexual issues in a
participate in social relationships ID/DD if confronted with numerous op-
curriculum that will support people with
which may involve sexual expression. posing views from staff. We would never
ID/DD. They didn’t want “to open that
The barrier lies not in the inability tolerate this if the issue was a behavioral
can of worms.” When I asked why, they
to develop responsible social and intervention. Careful plans are written
just laughed and said it was better not to
sexual behaviors, but in the misap- so there is consistent treatment. Yet the
go in that direction. Yet people with
prehensions and collective negative issue of sexuality is often avoided, which
ID/DD have sexual needs that if not
attitudes of some administrators, allows staff to fill the vacuum with their
fulfilled have resulted in unhappiness
professionals, family members and own values and prejudices.
and sometimes aberrant behaviors.
the uninformed general public. A sexuality policy needs to start with
At YAI/National Institute for People
a philosophy. Our stated philosophy at
with Disabilities we have always believed
YAI is the following (YAI, 2004):
that sexuality is a normal part of a per-
son’s personality, and that people with Sexuality is a basic biogenic need
If we are truly person-centered, then ID/DD have the same needs that all peo- and integral to the total way in which
ple have. There is an important concern an individual relates to his or her
sexual needs should be reflected about their ability to be able to provide world as a male or female. It includes
informed consent when being involved not just sexual activity, but also the
in service plans and in a coherent, in a sexual relationship, and that issue acknowledgement of feelings, ways
needs to be addressed in a professional, of relating to self and others, self-
positive agency policy. respectful manner. As Professor Ames esteem, gender identification, and
and myself also wrote: sexual orientation. Individuals with
ID/DD share the need to love and be
They continue to support outdated We all acknowledge that people with loved, and as consenting adults to es-
laws and public and agency policies ID/DD, for the most part, require tablish relationships with person of
which deny people with ID/DD the varying degrees of supports in many their choice and to express their sexu-
opportunity to develop the requisite aspects of their lives, including some ality so long as they are not injuring
responsible social and sexual skills degree of protection from harm, themselves or others. Staff needs to
and behavior, to exercise choice, and abuse, and exploitation. They are cer- be trained to help consumers develop
to have the opportunity for meeting tainly often in need of these supports healthy and functional expressions
and relating. The issue is over-control and protection in social/sexual rela- of their sexuality.
and a denial of basic human rights. It tionships and situations. This does
is fundamentally abusive in its not mean that they cannot make We also add, “To ensure that this hap-
effect. The cumulative result of such reasonable choices from an array of pens, the agency will value the voice, and
repressive and arbitrary attitudes viable options, give consent to par- advocate for the rights, of people with
and policies is human suffering and take in responsible social/sexual be- ID/DD.” We always respect individual-
degeneration. Most people with haviors with another consenting per- ity, which includes culture, spirituality,
ID/DD have either had to give up son and form fulfilling relationships. gender/gender identity, and sexuality

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Overview 19

(self-image, self-esteem, relationships, consultants a consent determination and self-esteem, awareness of others,
choice-making, sexual orientation), and will supersede a determination of legal body language, assertion, relation-
we affirm that “Every individual has the guardianship because the person with ships, body changes and awareness,
right to be supported to develop loving ID/DD is competent in that specific area; awareness of self as a sexual being,
and safe friendships and relationships.” this may vary in other states). abstinence, sexual expression,
Beyond our philosophy, in our policy awareness of laws relating to sexual
there are 11 specific social/sexual areas expression, avoiding abuse, personal
that are addressed. In the remainder of Friendships and Relationships and sexual hygiene, STDs and HIV/
this article six of them will be discussed An issue that often arises for staff is AIDS, pregnancy and contraception,
briefly: choices and consent, friendships when they should intervene if two con- marriage, and parenting skills.
and relationships, education and infor- senting people are being physically affec-
mation, sexual expression, reproduction tionate. Our policy states:
and contraception, and sexual behaviors Sexual Expression
Most relationships are not sexual, but
(YAI, 2004). (Additional detail on these some are physically affectionate. All People with ID/DD who live in YAI
areas and others in our policy is avail- people have the right to be physically residential programs and are consent-
able by contacting us at www.yai.org/ affectionate with an agreeable party. ing adults can use their bedrooms when
resources or calling 212/273-6100). Physical affection differs from sex. having sexual relations with another
Sex is the touching of the sexual parts consenting adult. It is amazing to me that
Choices and Consent (breasts, vagina, penis, anus) of the there are still many agencies that don’t
body for sexual gratification. Physical allow this basic human right. If a person
It is written in the YAI policy that: affection does not require the ability cannot use their bedroom, where are they
Adults with developmental dis- to provide consent, but rather, just a going to go to have sex? Almost any other
abilities have the right to make their willing partner. place could be illegal or dangerous.
own decisions about relationships. A We also recognize that people have
person with a developmental disabil- Therefore if the two people are holding different sexual orientations and prefer-
ity has the right to engage in sexual hands or even kissing, the sexual parts ences. Stated in our policy is the follow-
activity with another person provid- are not being touched for sexual gratifi- ing: “Accept that people with develop-
ing he/she is capable of providing cation and consequently they are being mental disabilities may be heterosexual,
informed sexual consent. affectionate. Sometimes staff say that lesbian, gay, bisexual, transgender, mono-
the hand holding or kissing might lead gamous or not monogamous, and have
The issue of consent is very important. to sex. Sometimes yes, but often no. The the right to express themselves accord-
Without the ability to consent, even treatment team needs to evaluate the ingly.” As previously stated, staff do not
if a person is a willing partner, sexual situation and make a determination. have the right to impose our values. As
activity is illegal. For the vast majority of long as the sexual act is legal and involves
typically-developing people, consent be- consenting adults, we don’t interfere.
comes automatic at an age specified by Education and Information
the state in which they reside or where People with ID/DD do need to receive
they are having sexual contact unless support through education about sexual- Reproduction and Contraception
they are in a comatose or other mind- ity, and also may need counseling. They We do address the issues of reproduction
altering state. For people who have often have not received accurate informa- and contraception. Most people with
ID/DD, there is no clear demarcation tion from trusted adults, but rather have ID/DD would have significant difficulties
in determining their ability to consent. gotten misinformation from the media raising a child. Yet there are some people
It is based on their individual capacity and others. At YAI, we provide social/ who can. If the person is a consenting
to understand the ramifications of their sexual training that includes how to tell adult, he or she has the right to determine
actions. At YAI, we have created tools to the difference between friends, acquain- a method of contraception if so desired.
determine consent for people who reside tances, and strangers; numerous boy- A person with ID/DD who is a consent-
in our residential programs and show an friend/girlfriend issues; and numerous ing adult and gets pregnant has the legal
interest in being sexually active. Also, in topics on having sex. According to our right in our state to carry the child to
our health clinics we provide consent policy, we provide, where applicable: term and attempt to raise the child, or
determinations to people with ID/DD ...education and information depend- to have an abortion, or to give the child
who live in residences from other agen- ing on interest and need, at a level up for adoption, and we support those
cies, live independently or live with and pace people with a developmen- rights. For those who do decide to par-
their families. (It is very important to tal disability can understand, includ- ent, we offer parenting groups to support
mention that we are located in New ing the following in this suggested them in raising their children.
York state and according to our legal order: Development of self-awareness [Samowitz, continued on page 35]
20 Overview

Sex, Disability and the DSP:


Ethically Supporting Sexual Choices
by Samuel Arnold and Alexina Vincent-Pennisi

Direct Support Professionals (DSPs) and pamphlets available. Often pro- 4. Be aware of ethical guidelines,
have a rewarding, though at times chal- viding some information in a format particularly privacy and confiden-
lenging, role to fulfill. Challenges can be that can be understood is enough to tiality. Respect for the privacy and
found particularly around support relat- manage difficulties that may arise. the confidentiality of information in
ing to sexuality. Perhaps this is because There may also be sex education relation to individuals you support
sex is often still a taboo subject for many courses that the person is interested are key issues in ethical guidelines for
people, and because of the contrasting in attending. DSPs. For example, if the person you
values and beliefs different people have 2. Be sensitive to other people’s are supporting is an adult, and they
towards sexuality. And perhaps it is values and beliefs. Sexuality can be tell you something about their sexu-
also due to the many myths regarding a sensitive subject when there are so ality or intimate relationships in con-
sexuality and disability, such as beliefs many conflicting cultural, religious, fidence, then it is not acceptable for
that people with disabilities are asexual and personal differences relating you to share that information with
or are incapable of having an intimate to it. For example, some religions the person’s parents or a colleague
sexual relationship. strongly believe in not having sex unless you have the person’s consent,
In response to this challenge we wish before marriage. Spend time with the the person or others are at risk of
to propose nine general pointers for person you support finding out what serious harm, or the guardianship
DSPs to consider about supporting a their beliefs about their own sexual- arrangement for the person makes
person’s sexuality and sexual choices. ity are. Be aware of your own values sharing with a guardian appropriate.
They are based on the premise that for and beliefs, and do not impose these 5. Be aware of organizational poli-
the vast majority of people with a dis- on the person you support. If the cies and local laws. It is first of all
ability, there is very little difference, if person’s values and your values are in important to know the boundaries
any, between sexuality as they experi- conflict, then you may not be the of your job description and the poli-
ence it and sexuality as experienced by a appropriate DSP to provide support cies of your organization regarding
person without disability. The pointers to the person in this area. assisting someone to engage in dif-
are as follows: ferent kinds of sexual activities. It
3. Know whether the person is able
1. You don’t have to have all the to give informed consent for sexu- is also important to know the legal
answers; get to know local sup- al activity. Sexual relationships need implications for some of the choices
port services. If concerns regarding to be consensual. A person needs to the person you are supporting might
sexuality arise that are beyond your know and understand the relevant be faced with. For example, facili-
expertise or knowledge, and cannot information in order to make an tated sex, that is, providing physical
be solved through simple education informed decision. Consent needs to support so that a person can engage
or a supportive conversation, talk be given freely. A person cannot be in sex, may or may not be within the
with your agency or organization. pressured to make a decision, and scope of your job description, and
As part of the person’s support team needs to understand the possible may or may not be legal in your state.
you may help to develop strategies consequences for this decision to be Possessing certain types of sexually
to address the person’s sexual sup- considered as valid, informed con- explicit materials may be illegal, and
port needs as part of their Individual sent. People need to be of a certain if you facilitate access to an illegal
Support Planning (ISP) process. If age to give informed consent relating activity, then you could be in trouble
the person requests and consents to to sexuality, which varies depend- with the law as well. It is advised
support in this area, in collaboration ing on your location. Some people that you consult with your employer
with your organization a strategy may have or need a legal guardian regarding your role as a DSP in pro-
may be to seek out the services of a or conservator who may need to be viding support for specific sexual
local sexual health clinic, sex thera- consulted before providing support activities.
pist or other health professional. You relating to sexuality. Talk with your 6. Support the development of inti-
may be able to locate a professional organization if there are concerns mate relationships. Intimate rela-
who specializes in sexuality for peo- about the person’s capacity to give tionships, for many people, are one
ple with disabilities. There are also consent, or concerns that a person of the most rewarding parts of life.
many simple educational materials has been pressured to give consent. For some people with disabilities,

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Overview 21

developing an intimate relationship such sexual education, ways to ad- Finally, remember that most people
can be more difficult. For example, a dress this need should be identified with disabilities enjoy sexual activ-
person living in a group setting may through the Individual Support Plan- ity and will start to develop their own
not be able to invite a partner over ning process. sexuality at the same chronological age
for dinner without having to share 9. Sexual health checks are just as as people without disabilities. Sexuality
the kitchen with their co-residents. important for people with dis- will continue to develop over the course
Some people even have to share their abilities. Remember that regular of the person’s lifespan and will be as
bedroom with a co-resident. You may pap smears, mammograms, and tes- diverse and colorful as it is for any other
want to facilitate opportunities for ticular checks are just as important person in the community. Knowing that
privacy, such as support to have din- for people with disabilities as they are a person is enjoying their sexuality or
ner at a restaurant or to go on a holi- for people without disabilities. It is a healthy intimate relationship can be
day, so that the couple can have time important that these checks are part very rewarding, particularly if you have
to themselves. You may also want to of a person’s regular health exams. If been part of supporting this to be a
facilitate opportunities to meet new their current health care professional possibility.
people, which can lead to relation- is unwilling or unable to provide such
ships, such as attending social groups checks (for example, some health Samuel Arnold is a Research Fellow and
or leisure activities. Many people use care providers may be unfamiliar Analytical Psychologist with the Centre for
online dating, though they may need with strategies for giving mammo- Disability Studies, University of Sydney,
support to be aware of possible dan- grams or pelvic exams to women Sydney, Australia. He may be reached at
gers in meeting people online. with certain types of disabilities) you samarnold@med.usyd.edu.au or +61-2-
7. Support safe sex. If a person is may need to help to advocate for the 8878-0500. Alexina Vincent-Pennisi is a
engaging in sexual intercourse, you person and may be asked to work Case Management Consultant with Ability
may want to check if the person with their care team to connect the Options, Sydney. She may be reached at
knows how to have safe sex. For ex- person with a health care provider ally.vincent-pennisi@abilityoptions.org.au
ample, you may want to ask, “Do you who can provide these exams. or +61-2-8811-1777.
need me to support you to purchase
condoms?” If a person doesn’t know
about safe sex, there are many edu- Some Thoughts From DSPs on Supporting Relationships
cational materials available to help.
You don’t have to teach the person The Impact editors recently asked Direct Support tions or any information shared will ever leave
about safe sex if you are not comfort- Professionals (DSPs) to share the most important the confines of the relationship or home. - Kelly
able doing this, but it is important lesson they’ve learned about supporting the The National Alliance of Direct Support Profes-
to address this need in the person’s sexual choices and privacy of the individuals sionals Code of Ethics (http://nadsp.org/orglibrary/
ISP, which may include seeking out with disabilities with whom they work. Among codetext.asp) includes the following guidance
support from a sexual health clinic or
the responses were these two insights: about supporting relationships and sexuality:
other health care provider.
In 1989, professional people filled a confer- As a DSP, I will assist the people I support to de-
8. Sexual aids can be helpful. For
some people, things like “sex toys” ence room where a woman was being coached velop and maintain relationships. As a DSP, I will -
(assistive sexual devices) or sexually to, “Tell them what you want.” Sheepishly, - Advocate for the people I support when they do
explicit literature can be very enjoy- she said, “I want to have sex with Jim.” The not have access to opportunities and education to
able. For a few people with certain meekness of her voice disguised the courage facilitate building and maintaining relationships.
types of physical disability, using a it took to reveal a private wish so publicly. We
sex toy may be one of the few ways - Recognize the importance of relationships and
didn’t mean to turn such a personal matter
that they can enjoy sex. If your job proactively facilitate relationships between the
into meeting fodder. We just didn’t know that
description, agency policies, and people I support, their family and friends.
“team processes” do not always require team
local laws allow, you may be asked to meetings. Courageous words, meekly voiced, - Assure that people have the opportunity to
support a person to purchase materi- taught us though. - Marianne make informed choices in safely expressing their
als or sex toys. A person may need to sexuality.
be taught about the appropriateness The most important lesson I’ve learned in my
of some activities, such showing experience is the importance of facilitating a - Separate my own personal beliefs and expecta-
explicit materials or sex toys to relationship with my consumers where dignity, tions regarding relationships (including sexual
others. They may additionally need respect, and understanding are held in the relationships) from those desired by the people
education about safe and hygienic highest regard. This fosters growth and under- I support based on their personal preferences. If
use of sex toys; if a person needs standing so that open lines of communication I am unable to separate my own beliefs/prefer-
can be made without fear that our conversa- ences in a given situation, I will actively remove
myself from the situation.
22 Profile

Coming Out: A Daughter-Mother Conversation


by Corbett Laubignat with Nancy Laubignat

Where to begin? How do we have this


conversation? Sitting at the round glass
dining room table with my mom, Nancy,
and a laptop, we talk about the process,
the road that we travel on together. She
brings out her notes and she says, “I
wrote something” and proceeds to read
a beautiful summary of her experience
raising a girl with a disability, who just
happens to be a lesbian. Or should I
say a Lesbian who just happens to have
Cerebral Palsy. We begin with her gut
reaction to my coming out… “At first, I
was very surprised! What about those
yummy Brad Pitt posters on the bed-
room wall, or the tears and screams for
hot male rock stars?” She goes on, “So
very pretty, feminine, and even a flirta-
tious side; kisses and college sex.”
The conversation continues and she
goes on to say, “But when the truth came
out I started to put the pieces together… you don’t want to let down your family? learn from; this period did not truly
The pain and frustration I remember her Oh, how I wish I would have seen the happen for me until I went to college.
signs earlier, opened the door for a con- In trying to help me, I was put into
versation. We knew gay guys but not so counseling from the time I was seven
many lesbians. Corbett expressed that years old until my fourth year of college.
We begin with her gut reaction to she thought only guys could be gay.” Although I had several counselors, it
With tears streaming down my face, I seemed to always be about the disability
my coming out… “At first, I was say, “You did know what I was going and my adjustment to it rather than
through!” We laugh now, but when you the deeper issue. What if someone had
very surprised! What about those are in it, it feels like nobody sees you. taken the time to understand that the
I had tried to get involved and inter- real issues I was having had to do with
yummy Brad Pitt posters on the act with my peers, but all they saw was understanding who I was as a sexually-
my wheelchair, the Disability. I was at a maturing woman who had some real
bedroom wall, or the tears and party once, the only boy/girl party I was questions about what all these feelings
invited to before I was completely left meant? What if I had gotten some
screams for hot male rock stars? out, and I remember a boy whispering, validation, someone had seen that the
“How do you dance with her?” My heart struggle wasn’t disability-related but
But when the truth came out I broke. This is only one obstacle, but it sexuality, wanting relationships, inti-
represents the distance between me and macy, sex, to find what feels good and
started to put the pieces together.” the opportunities that others, without what doesn’t? What if someone under-
disabilities, may experience. I might stood that I wasn’t getting my human
have had the chance to “figure things needs met? My mom goes on to read, “A
out” had I had a way or opportunity part of me was worried: she is so sexual,
suffering so, not a poor me over a dis- to navigate those social/physical gaps. what is going to happen to her?” And
ability, but more confusion and devasta- How do I help others to be comfortable my response is, “It was so painful
tion over losses of best girlfriends. The around me when I am still figuring what because I had all of those feelings and
lack of support in her world, and how I am comfortable with myself? There is had no place to put them. Everyone
to talk about something so strong you a period of time that young adults use asked if I was angry because I was dis-
were feeling. Where do you turn when to flirt, experiment, make mistakes and abled and I was angry, yes, but it was

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Profile 23

about wanting intimacy. I wanted the the receiver as well as the giver. Laughter dream just like everyone else. May we all
movie stuff. I wanted the Tom Cruise through tears is the best way to get to find happiness where we least expect it.
Risky Business stuff.” know yourself and others. Even when
So it was in college where I met peers the lines of communication look thread Corbett Laubignat is Peer Mentoring Coor-
who saw me for me and I was able to bare, keep talking; there is always some- dinator/ Independent Living Specialist at
have those experiences I saw in the mov- one on the other end. Information is vi- the Metropolitan Center for Independent
ies. I was searching for and wanted to tal to understanding the real issues, and Living, St. Paul, Minnesota. She may be
give normalcy to a very not normal situ- sometimes the issues just need a voice. reached at 651/603-2028 (Voice/ Fax),
ation. Then I met my Ashley and it was My mom and I have learned so much 651/603-2001 (TTY), or by e-mail at
like finding that one thing that brings about each other and ourselves by writ- corbettl@mcil-mn.org. Her mother,
you comfort. Then the feelings of doubt ing this article and we encourage people Nancy, lives in suburban Minneapolis and
set in. I felt as if I let the family down. I with disabilities, their families, friends, has over 30 years experience as a massage
had always envisioned bringing home a and professionals to support the fact therapist.
boyfriend to give my brother a male role that people with disabilities have the
model. Instead, I brought home Ashley. right and desire to express their sexual-
My mom explains, “Suddenly I was at ity, experiment, experience, fall in love,
a loss for rules. Should she sleep with make mistakes, get a broken heart and
her friend in my house? I wouldn’t want
it if it was a guy. I laugh about the tent
built in her bedroom.” She goes on, “My
role changed so. I no longer helped with DSPs Talk About Supporting GLBT Individuals
those special needs – dressing, bathroom
etc. Felt left out. But then I’d hear them The Impact editors recently asked Direct are or what their disability is, was already
laughing and talking, talking so at ease
Support Professionals (DSPs) to share the there before I walked through their door. An
with each other and very much in love.
Questions pop into mind like, ‘What most important lesson they’ve learned about exuberance of a non-judgmental stance, of
about babies?’ As time went by and their supporting the sexual choices and privacy of genuine compassion, helps my consumers
relationship grew it was the same letting the individuals with disabilities with whom feel comfortable, and me, approachable, with
go as it would be in any loving relation- they work. Among the responses were these anything they choose to share. I don’t ask a
ship. Their comfort level slowly let me about supporting individuals who are gay, consumer what their sexual orientation is;
back in. I found myself so happy that
lesbian, bisexual, and transgender (GLBT): that is inappropriate and not part of a DSP’s
they were so happy. It’s okay not to be
immersed in their life. Everyone grows.” • Years ago, a team’s advocacy prompted job. Privacy isn’t a choice, it’s a right. So one of
We discuss that mom was unsure Jim’s group home to allow him to interact the greatest lessons for me would be to treat
about some of the literature Ashley and intimately with Tina. But Jim’s interest in every consumer with intellectual and devel-
I gave her – information about opmental disabilities with the same respect,
Parents and Friends of Lesbians and Tina didn’t last. Now years later, Jim’s own
self-advocacy has resulted in his long-term support, acceptance, dignity, and right to pri-
Gays (PFLAG) and books. She mentions,
romance with Tim. The guys love spending vacy as I would treat any other consumer. And
“I thought it was about people who are
upset about their gay kids.” Both of time together in each other’s rooms. But for that began with my sister Joan. – Pamela
us realize now that this was my way of their housemates, “It’s just no big deal.” - • I worked with a young woman who liked to
asking her to show me acceptance and Marianne dress in boy’s clothes and was attracted to
support. My mom sums it up when she other females. Staff did not accept who she
says, “Gay is this world of wanting rights • I actually learned acceptance and support
and being supported. I could have joined of sexual orientation at the age of 12 when was. I took her to Philadelphia’s Outfest, a
something to show my support, even my sister Joan informed me she was gay. family-friendly gay pride event. She could not
though I was supportive. It amazes me, I remember telling my friends it was the stop talking about the women who looked like
all the derogatory comments made by her. I learned that we have to find ways to af-
same as a man loving a woman. It never
people all the time. It is disgusting how firm not only heterosexuality, but all sexuality
freely people discriminate.” occurred to me to judge her, or anyone else.
So when I started my job in home health- and forms of gender expression. – Jennifer
We want to leave you with the un-
derstanding that it’s not always about care 15 years ago, respect, support, and
disability. Support comes in all shapes, privacy for individuals, no matter who they
sizes, and needs to be recognizable by
24 Profile

A Witness to Courage
by Dave Hingsburger

“Can we talk to you after the confer- awful lot of coordination to arrange for them. When she found the other man
ence?” Public speakers hate this ques- an agency car to abduct a harmless living in a group home operated by the
tion. It means that someone wants us to Canadian. I got in and we drove for same agency in a different town, nothing
sit and do a free consultation after we almost an hour. I enjoyed chatting with could stop her. They would live together
have spent an entire day in front of an them and I felt buoyed along by their if they chose.
audience. Few seem to realize that pub- excitement. We crossed a state line and When they were reunited, they de-
lic speaking takes a lot of energy and at I asked why we were leaving the state. cided that they would not live together,
the end of a day all that is wanted is beer They said, “Just wait.” they would not have sex, until they were
and bed. We entered a smallish city and in married. They had been punished so
Here my initial assessment was moments were pul­ling into the park- often, told continuously that they were
wrong. A small group of very nervous ing lot of a Unitarian church. I went dirty, sinful, hateful creatures, that
people gathered to ask me what I was in with them and saw several people, they needed to get married “like other
doing the next day. They knew, they many who had been at the conference people.” When they were told that they
said, that I was stay­ing over Saturday the day before, rushing about decorating couldn’t get married, they cried but had
and flying home Sunday, and they want- the sanctuary. Clearly I had come to a seemed prepared for that answer. The
ed to take me somewhere. Right after church where a wedding was about to be staff mem­ber wouldn’t let go of it. She
presenting “pro­sex attitudes” in a state performed. I sat near the back with the visited a Unitarian church in their town
wherein agencies had an almost univer- group with whom I had travelled. When and worked with the minister to find a
sally hostile practise towards sexuality the music began the small crowd of church out of state where a ceremony
about 50 hushed, an air of expectancy could be performed. She felt that this
– ­no, reverence – filled the room. Then would be far enough removed to pro-
into the sanctuary, into the house of tect the sanctity of the ceremony and
They had been punished so often, God, came a man with a developmental provide the secrecy that was needed.
disability. He walked slowly, his gait that Everyone there had pledged support and
told continuously that they were of one who had once worn the shackles secrecy.
of institutionalization. He looked to be The two were informed that a mar-
dirty, sinful, hateful creatures, that near 60. I smiled, tears formed in my riage could be performed. The staff told
eyes. When I see people with disabilities them that while God might smile on the
they needed to get married marry, I recognize that the march to the marriage, the government wouldn’t. It
altar to stand before God is long. They would be a holy ceremony, not a legal
“like other people.” must march past societal bigotry, family contract. That was fine with them, they
disapproval, religious intolerance, and said, seemingly unconcerned that we
agency dictates. He finally reached the in the modern world had switched alle-
altar. The music stopped. Silence. The giances and granted governments more
and disabil­ity, they wanted me to get in music began again. power than God ever wanted.
a car with a bunch of them. I said that I From the other door came another “See the fellow on the right?” I nod-
was uncomfortable with the idea as they man. He too was older. He too walked ded while noting the man who had
were all strangers to me and I could tell as if the chains that bound his feet had walked in first. “When he was in the
by their behaviour that something was only recently vanished. I looked at the institution, he was castrated. They
up. They said they were just excited and woman next to me and said, “What’s thought that would stop him from be-
really wanted me to come. To their cred- going on!?!” She smiled and said, “They ing homosexual and wanting to see his
it they didn’t pressure me, and just said, are finally getting married.” She contin- boy­friend. Can you believe it?” I can and
“We’ll come by tomorrow morning at ued by telling me that they had met as did, having worked with two women
10:00. If you decide then you don’t want young men in the state institution and with disabilities who had been clitorec­
to come we will just drop it.” I agreed. had been caught together “engaging in tomized to stop them from being sexual.
The next morning I went outside sexual behaviours” (social worker for How we hate the hearts of people with
the hotel to watch for them. When they “making love”). They had endured years disabilities! We have caged their bod-
drove up in a vehicle with an agency of punishment and separation. A staff ies, disfigured their genitals, drugged
logo on it, I made my decision. I’d go. It member heard the story from one of their thoughts. But we have never, ever
seemed to me that it would take an the men and diligently set out to reunite captured their hearts or controlled their

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Profile 25

spirits. What other group of people The two men stood and pledged their Reprinted from “Impact: Feature Issue on
could walk from institution hallways to lives to each other. They stood on holy Supporting Diversity” (Summer 1996),
community streets with so little diffi- Pro-ground and each professed, through published by the Institute on Community
culty? What other person could go from their pledge, a faith in each other. Seeing Integration, University of Minnesota. Dave
the sacrificial table of medicine to the the beauty and steadfastness of human Hingsburger is Director of Clinical and
altar of God and still take the hand of a love and the power of the human spirit, Educational Services, Vita Community
man he had loved for decades? I wept. And, I believe, so did God. Living Services, Toronto, Ontario. He may
be reached at http://www.davehingsburger.
blogspot.com.

Sexuality Education Resources


• Sexuality Education for Children book gives social workers, teachers, and direct apply the rules of social intimacy in more complex
and Adolescents with Developmental support professionals comprehensive information settings, how to recognize and avoid sexually
Disabilities: An Instructional Manual for to use as they educate people with intellectual threatening or abusive situations, and how to
Parents or Caregivers of Individuals with disabilities about sexuality and help them make prevent and treat communicable and sexually-
Developmental Disabilities (http://www. the best possible choices across the lifespan. transmitted diseases. Available from James
albany.edu/aging/IDD/docs.htm). By D. Written by contributors from diverse fields, it Stanfield Co. Inc. (see http://www.stanfield.com/
Baxley and A. Zendell. This manual, available blends in-depth examination of legal and clinical circles-main.html, 800/421-6534).
online for free, is designed to help parents and issues with sensitive discussion of the emotional • Sexuality Training for Individuals and
caregivers assist young people with intellectual or side of sexuality, going beyond the facts of life Agencies. Agencies looking for workshops on
developmental disabilities in their exploration of to offer candid interviews and personal anecdotes sexuality for the adults with disabilities they
self and sexuality, preparing the young person to that show how real-life couples with disabilities serve, and for their staff, may find that the Centers
live and participate as independently and safely handle the joys and challenges of their relation- for Independent Living (CILs) in their area have
as possible in the community as an adult. Among ships. Published by Brookes Publishing Co. this resource available. To locate nearby CILs con-
topics covered are bodily changes, social skills, (see http://www.brookespublishing.com, tact the National Council on Independent Living at
dating, and recognizing and avoiding abuse, 800/638-3775). http://www.ncil.org/ or call 877/525-3400.
as well as tips for adapting the material for • An Easy Guide To Loving Carefully For Men • You’ve Got a Friend: Supporting Family
different learning styles. Published by the Florida and Women (Fourth Edition). By L. McKee, Connections, Friends, Love, and the Pursuit
Developmental Disabilities Council, Inc. Also W. Kempton, and L. Stiggall-Muccigrosso. This of Happiness. The College of Direct Support, an
available is a companion manual for educators. book for men and women with limited reading online, competency-based training program for
• Sexuality: Your Sons and Daughters and cognitive skills presents information about Direct Support Professionals (DSPs) nationwide,
with Intellectual Disabilities. By K. Melberg sexuality in simple language. It addresses includes among its courses “You’ve Got a Friend...”,
Schwier & D. Hingsburger. This book for parents anatomy, abstinence, intercourse, contraception, which explores the importance and meaning
talks about how to interact with children – no pregnancy, STDs, sexual health problems, sexual of relationships in the lives of people of all ages
matter their age or ability – in a way that health exams, and sexual orientation. It includes with disabilities. Topics covered are the benefits
increases self-esteem, encourages appropriate 54 descriptive diagrams by medical artist Vivien that healthy relationships bring to people’s lives,
behavior, empowers them to recognize and Cohen. Published by Winifred Kempton Associates common perceptions and prejudices about people
respond to abuse, and enables them to develop and available through various retail booksellers. with disabilities that create barriers to social
lifelong relationships. It includes stories, advice • Circles® Curriculum. Co-created by L. Walker- relationships, common challenges that DSPs
and practical strategies from parents, as well Hirsch. The Circles® Curriculum is designed for face when supporting people in developing and
as individuals with intellectual disabilities use with students who have intellectual and maintaining relationships, strategies for over-
explaining what’s important to them. Published developmental disabilities. It teaches relationship coming these challenges, and effectively support-
by Brookes Publishing Co. (see http://www. boundaries and relationship-specific behaviors ing family relationships. To learn more visit http://
brookespublishing.com, 800/638-3775). using a simple multi-layer circle diagram to www.collegeofdirectsupport.com, and under
• The Facts of Life...and More
: Sexuality demonstrate the different relationship levels “Curriculum” select “CDS Courses.”
and Intimacy for People with Intellectual students will encounter in daily life. It’s composed
Disabilities. Edited by L. Walker-Hirsch. This of four different programs that also cover how to
26 Overview

People with Disabilities and the


Federal Marriage Penalties
by B.J. Stasio

People with disabilities want to get mar- addition, there is also a resource limit; are more than $3,000. I would lose my
ried. We fall in love and want to make the amount of money you can have in the Medicaid benefits. Then, with my
a commitment to the person that we bank for an individual is $2,000 and for nursing costs alone being more than
love and become a family. For many a couple it is only $3,000. Beyond these $300,000 a year our assets would go be-
it is a religious choice to get married. marriage-related SSI benefit and asset low $3,000 in a matter of months as we
Yet, too many people with disabilities restrictions, eligibility for SSI in most spent them down, and I could go back on
must choose between getting married states means eligibility for Medicaid. Medicaid. During this process my spouse
and continuing to receive the benefits Medicaid covers services not covered would probably have to take a pay cut or
they need to live from federal programs by other health insurance plans such quit her job altogether to ensure we keep
such as Supplemental Security Income as a personal care aid, certain durable our assets below $3,000. Think for a mo-
(SSI) and Medicaid. Too many have medical equipment, medications, and ment what we might then need. Off the
to struggle with this choice because of transportation to medical appointments. top of my head I come up with housing
“marriage penalties.” So anything affecting SSI eligibility may assistance, food stamps, and Medicaid
have a ripple effect. (For more informa- or Medical Assistance for my spouse and
tion see Treatment of Married Couples in for any children. Without the Medicaid
The Problem
the SSI Program on the Social Security loss, my spouse would have probably
SSI is a needs-based federal program Administration Web site at http:// taken care of all of the above and more
that helps people with disabilities (as www.socialsecurity.gov/policy/docs/ instead of the government. People with
well as people who are elderly) who have issuepapers/ip2003-01.html; and disabilities on Medicaid who get married
little or no income. It provides cash to Determining Whether a Marital Relation- and cannot stay on Medicaid do save the
meet basic needs for food, clothing, and ship Exists at https://secure.ssa.gov/ Medicaid program some money, but they
apps10/poms.nsf/lnx/0500501150). cost other government programs more.
Obviously, loss of SSI or Medicaid    The Medicaid Marriage Penalty is
benefits can be devastating, life chang- misdirected and wrong because it pre-
Too many people with disabilities ing, and even life threatening to a person vents many people with disabilities from
with disabilities. And that is why there is getting married or even staying married.
must choose between getting a national movement to get this changed. People with disabilities deserve to be
I want to share with you how marriage able to get married to the one they love.
married and continuing to receive penalties are affecting real people, and Some believe the only way to be with the
why we want them changed, by sharing one they love is through marriage. If you
the benefits they need to live. the perspectives of two other self-advo- believe people with disabilities should be
cates: Timothy and Kurtlyn. able to get married, please go to my Web
site (http:// DisabilityVoiceSpace.org)
shelter. If two people receiving SSI get to learn more about the Medicaid
married, they will receive 25% less in
Timothy’s Story
Marriage Penalty (you can find it under
benefits than they did as two individu- I was diagnosed with Duchenne Muscu- “Advocacy”), and sign the online peti-
als. The theory is that a couple can live lar Dystrophy at age three. At almost age tion. Please don’t forget to tell everyone
on less income together than they would 37 I am on a ventilator 24/7 and can only about this including your legislators!
as individuals. In addition, even if a cou- turn my head a little and move my fingers
ple doesn’t get legally married, they can slightly. Having a pre-existing condition
be considered to be “holding out” if they
Kurtlyn’s Story
and high medical bills, the only way to re-
are presenting themselves as a couple by ceive the care I need is through Medicaid, I would like to see people who receive
SSI definition; for them, the same rules and it is the same for many with perma- SSI or SSDI not be affected by their
apply as for a married couple and they nent disabilities. spouse’s income. It is not anyone’s fault
will have their benefits reduced. If only I had a girlfriend a few years ago and that they’re disabled, and therefore they
one person in the couple is receiving SSI, it didn’t work out, but I wonder about should not be treated as such. Some dis-
the benefit will still be reduced or they the future if I meet someone again. Let’s abilities have tremendous care involved,
may no longer be eligible for it. In say I got married and our joint assets which can be financially straining. To

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Overview 27

lose the financial help of Social Security My Story


When we started to think about
is just wrong. Nine years ago my mother said to me, getting married we began looking into
I receive Social Security disability ben- “I want you to find someone, fall in love, how I could be married and keep my
efits due to my mental illness. Because of be happy, and someday get married.” I Medicaid that I need for a personal
my mental illness, I am limited to part- was aware of some of the problems with care aid and medical equipment not
time work. It is not my fault that I have her request, including federal marriage covered by regular health insurance. I
my mental illness, and I have to struggle penalties, and I felt: Why try? It’s never did not want to put financial pressure
financially as it is because of not being going to happen so just give up. onto Amber so I applied for Medicaid
able to work full time. If I were to get But, today I am married to the most through the Medicaid Buy-in for Work-
married, I would not want to be a finan- patient, wonderful, and understanding ing People with Disabilities. I can keep
cial burden on my husband because I lost woman in the world. When I started to my Medicaid as long as our income does
my Social Security. It is hard enough now date my wife I had no idea I would marry not exceed $73,884. My wife still had to
as it is with me supporting myself. And I her. I honestly figured that we would fill out a spousal refusal form that states
don’t want to have to be in the position just date and that would be that. I am she refuses to be responsible for the
where I have to choose between keeping a self-advocacy coordinator who works financial expenses for my personal care
my benefits or getting married. with people with disabilities. I am also aid and the medical equipment. Some
People with disabilities should have a trainer. My wife took part in training readers might be saying to themselves
the same rights as anyone else, and that to get ready for a new job as a service that sounds a little harsh, but when you
should include marriage. People with coordinator and there was a problem consider how much personal care costs
disabilities fall in love, and have the same with one of the trainers and their equip- per year you would realize that we would
beliefs as those without disabilities when ment. I happened to be there and Amber not be able to cover the cost with our
it comes to making the commitment to came up to try and help me figure it out. earnings, so this was the only way to go.
spend the rest of their lives with some- When we looked at each other we knew Today, I am truly lucky to have a job
one. Marriage is a very important thing to there was something between the two where I make enough money that I do
a lot of people, and I don’t want to have of us. We weren’t sure what, so for the not have to worry about SSI benefits.
to miss out on it just because of the risk next three days of training we talked and But, many other people with disabilities
of losing my benefits. I also don’t want to had lunch every day. She thought that I are not in my position. That’s why I’m
have to lose someone in my life out of fear wanted her to work for me as my service working with others to try to eliminate
of me being a financial burden to them. coordinator, but of course I had other the marriage penalties for SSI and
I would like to see people who receive designs for our relationship. There came Medicaid. I believe that by removing the
Social Security in any form be able to a time where I was e-mailing, calling, penalties, the number of people on SSI
keep their benefits if they get married. trying to convince Amber to date me. who marry will increase. This will allow
I cannot imagine losing my Social For a little while the calls stopped. So I more people with disabilities who have
Security, which would then make me kind of figured she’d found a boyfriend. found someone with whom they want
lose my insurance as a result. I have to I finally contacted her again and she gave to spend their lives to actually be happy
go to counseling once a week, and there in and we went on a date. She took me and not have to worry about how they
are times where I go twice. There are to her church. Our first real date, outside are going to be able to live. Please join us
also times where I participate in groups of church, was a New Year’s Eve party in making that happen!
(another service that is billed), or my where I had the opportunity to give her
doctor’s visits; all these things add up the first kiss in our relationship. She took Note: I would like to say thank you to the Self-Advocacy
Association of New York State and the SSI Marriage Penalty
as a financial responsibility that I don’t me home to my place, and when we got Task Force for their tireless support and efforts to remove
want my spouse to have to take on just there I showed her a photo album. In the the marriage penalties. Also, thank you to my friends who
because I have an illness. I cannot afford photo album was a picture of this little allowed me to share their stories.
to lose my insurance just because I lost kid (me) at camp for “crippled and dis-
my benefits for marrying someone. There advantaged children.” She started to cry B.J. Stasio is a Self-Advocate and lives in
have also been a few times where I had to and said ,“You’re little Billy!” You see, she Buffalo, New York. He may be reached at
take a leave of absence as a result of my went to a neighboring camp, Camp Pio- 716/907-4735 or maze1834@yahoo.com.
symptoms increasing. I rely on my Social neer, as a child at the same time as me, To learn more, watch the video “SSI
Security to fall back on when I am out of and the campers from Camp Pioneer got Marriage Penalty” on You Tube (http://
work. Please take into consideration the to come over and visit the camp where I www.youtube.com) produced by the Self-
stress someone with disabilities has to go was. She saw me sitting at the baseball Advocacy Association of New York State.
through to begin with to get through a diamond, wanted to find out more about And visit “Love the Diffabled” on Facebook
day. And once again, having a disability is me, and wanted to just play ball with me. for more discussion and a marriage penalty
not someone’s fault. We had actually met 30 years earlier. form letter to send to legislators.
28 Profile

Eighteen Years and Counting:


Tom and Maureen’s Story
On June 27, 2010, Tom and Maureen Maureen: We met in the summer of okay to bring Maureen up?” And she
Marolt marked their 18th anniversary. In 1977 and at the time dating between kids said, “It’s okay,” so I brought Maureen
July they sat down with Beth Fondell and with disabilities was kind of unheard of up and they hit it off really good. My
Vicki Gaylord of the Institute on Commu- because the guys were separated from brother, Don, used to play football for
nity Integration to talk about their journey the girls. People thought that people with the Mesabi Junior College, and one year
together through love and life. disabilities should not date. But we are I asked Maureen if she wanted to go to
human. the game. So that’s where she met Don,
Q: Maureen, can you tell us where and he liked her.
you met? Q: Did people say things to you to
Maureen: We met on a blind date. A discourage you from dating? Q: I’m wondering what you saw in
mutual friend fixed us up. I was living at Maureen: Counselors gave you a look. each other that made you think he’d
Clara Dora Residence [an ICF-MR], and make a good husband or she’d make
I was working at Opportunity Work- Q: How did your families feel? a good wife?
shop. The friend said there’s this guy I Maureen: Well, in Tom I could see he
Maureen: First, they weren’t real
want you to meet. I was kind of leery at was hard-working, and he made me
pleased. Well, I think they were afraid
of the fact that he had seizures, so they laugh. The laughter keeps us together.
thought financially we would not be able You have to laugh at each other once in
to support ourselves. awhile. And I knew that he would be a
good provider.
Q: Did your family like Tom? Tom: She cooks really good and I like
Maureen: First, my grandmother met her cooking. She works hard also. I’ve
him and thought he was okay. She said seen her at work and she works really
if she was 20 years younger she would hard. I don’t know how she does it. Then
have...[laughter]. every once in awhile she’ll say, “Let’s
take a break and go out somewhere,”
Q: And other family members? and then we’ll come back home and
relax and joke around. She’s all around a
Maureen: Tom made the mistake of
good wife.
discussing politics with my father. My
dad at that time was the mayor of my
first. She brought him to the lunch room Q: One of the things I’ve noticed
hometown.
and he sat down. He imitated W.C. about you over the years is that
Fields and then Mae West. His first line you’re very thoughtful about each
Q: So there you are, Tom, this young
was...Do you remember what you said, other, very considerate.
guy dating the mayor’s daughter,
as W.C. Fields? discussing politics with him. Did you Maureen: Yes, we are very thoughtful
Tom: Yes indeed my little chickadee. Yes think that was a good move? toward each other. That’s important.
indeed, yes indeed. Tom: [laughter]. He was the one that liked Tom: Yes, it is.
Maureen: [laughter]. And then he did a to talk politics. Then I don’t know how I
Mae West impression... got into it. Q: I’d like to hear more about the
Tom: Come up and see me sometime. marriage proposal.
Q: Tom, what did your family think
Maureen: [laughter]. He had me rolling Tom: It was on St. Patrick’s Day, and we
about Maureen?
on the floor and I knew from that point were out somewhere and I said, “Mo,
Tom: My dad had died on May 15, so she how’d you like to marry me?” And she
on he was the guy for me.
didn’t get a chance to meet him. When got this big glow and said, “Okay.”
he was alive I asked if I could bring her
Q: How long did you date before you Maureen: He gave me this cocktail ring,
up for him to meet, and he said, “Yeah,
got married? a green stone with stars around it.
that’s cool.” But then he died. When the
Tom: 16 years. funeral and everything was over, I later Tom: Do you still have that? How come
called up my mom and asked, “Is it still you don’t wear it?

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Profile 29

Maureen: And then later we got our two of my buddies that I grew up with, Q: Just about a month ago was your
gold wedding bands. they stood up. And my mom was there. 18th anniversary. Did you do some-
thing special?
Q: Who were the people who sup- Q: When you look back on your wed- Maureen: In the morning I took him
ported you to get married? ding day, what stands out most? golfing, and then that afternoon our
Tom: My mom of course, and my broth- Maureen: The thing that stands out friends took us up to Stillwater to a
ers, my sister, our pastor at St. Richards most is that both parents walked me German restaurant.
Catholic Church, some people at the Arc. down the aisle and did it to the prelude Tom: I did plan something for that
from the Sound of Music. night, but that didn’t work out so some
Tom: We sent out about 80 invitations friends of ours took us to Stillwater to
and 75 actually came. We figured not too that restaurant.
many would come because, you know,
they’re getting up there in age. But it was Q: For your 17th anniversary, that
a beautiful day. One thing she forgot was was really special. What did you do?
to throw her bouquet. No one gave her a Maureen: That was Maui.
cue to do that.
Tom: We went with a group called
Maureen: I thought with five sisters one Off the Beaten Path. They give tours
would give me the cue. Eventually as we with people with special needs. What
were leaving the reception to go to the happened was the first time I went to
hotel I did throw it and I believe my sister Hawaii, after I came back she saw the
Sheila caught it. photos and said, “Man I’d love to go
there sometime.” So we went and had a
Q: Who helped you with the arrange- Q: Tom, anything else stand out about good time. She wants to go back.
ments or did you do it all yourself? the wedding day?
Maureen: My older sister went to my Tom: I think, correct me if I’m wrong, Q: Anything you want to say about
parents, and kind of went to bat for me. that a friend used to drive limousines so what you’ve learned from 18 years of
She said, “Dad and mom, she’s ready to he drove us to the hotel in the limousine. marriage?
get married.” At first they didn’t want That night I didn’t know what got into Maureen: You have to give and take,
to let me go. But I had a lot of good me. At the reception everyone was asking and take the good with the bad, and you
support. My aunt, Sal, was very support- if I was okay; they said I looked flushed. I work through difficult periods. In our
ive, and my counselor at Arc was very felt okay. Of course I’d never been difficult period we asked for help.
helpful. We had premarital counseling married so it must have been nerves.
Tom: I want to let people know that
through Arc, it was a program for about it takes a lot of hard work and I think
8 weeks. Also at St. Richard’s we worked Q: What do you like most about being
married? communication’s number one, and mak-
with the wedding coordinator. I have ing sure you’re both right for each other
a friend who owned Mary Kay Bridals, Maureen: We take the good with the in the first place.
and she got me my dress. bad. We’ve had our ups and our downs.
It’s give and it’s take. But I’m so happy Q: You haven’t said too much about
Q: Did you have any attendants? we’ve made it this far. We had a tough love. Are you still in love?
Maureen: My best friend, who was one patch where it was rough. There were
times when he was out of a job and a lot Both: Oh yeah!
of my roommates, she stood up for me.
And then another friend was my maid of times he would get frustrated. Maureen: Yes, we do love each other
of honor. I didn’t want to play the favor- and very, very much.
ite sister game. I have five sisters and I Q: Tom, for you what’s the best part
Note: Wedding photo by Dale Studios, Eden Prairie, Minnesota
didn’t pick any of them because I didn’t of being married?
want anyone to be left out and feel bad Tom: For me the best part is you can Tom and Maureen live in St. Louis Park,
if I didn’t choose them. So Tom and I count on each other. Whereas if you’re Minnesota. She works at PetSmart, and he
tried to involve as many people with single, you’re the only one you can count at the new home of the Minnesota Twins,
disabilities as we could in the wedding. on. So it’s nice that you can have some- Target Field in Minneapolis. When they’re
body to come home to or talk to if you’re not working they volunteer for a number of
Q: And who stood up with you, Tom? tired. community organizations, go to sporting
Tom: There was my brother, my sister, events, golf, bowl, and work on their condo.
30 Profile

Becoming a Mom: My Experience So Far with


Pregnancy and Parenting
by Mai Thor McIntosh

As a woman with a disability, I don’t the regular fears, worries, and stress that my glucose test determined that I also
always anticipate every choice I make to any expectant mother would have. had gestational diabetes. From that
be difficult and challenging. Actually, Everything was going well during the point on, I had to check my blood sugar
I see a lot of things in my life as easy first six months. I was eating well, the level before each meal. I ended up seeing
and simple because of how I choose to baby was healthy, and I was expected two different doctors twice a week. I was
live my life as a disabled woman. Most to carry to full term. During one visit to also getting big and moving around
people with disabilities will tell you that the OB/GYN, however, it was discovered became difficult. I could not transfer
we want to be treated in the same way as that I had high blood pressure. My bot- easily out of my chair any longer. My
everyone else. We want the same chance tom number was extremely high and husband had to drive me to work every
to be able to live our lives. This is true I was told this could affect the baby’s day because I was not able to get in and
for me, too. My disability isn’t the main heart rate by slowing it down. The clinic out of my car. I was pretty miserable.
anchor in my life from which all other staff whisked me away and admitted me
things stem. I define myself as disabled, into the hospital promptly for further
and yes, it does impact how I live my monitoring. Fortunately, the baby’s
life. However, I don’t make decisions heartbeat was strong, so my blood pres-
for myself strategically around the fact sure was not affecting him. After lying
that I have a disability. I took the same down for a couple hours, my numbers
approach to pregnancy and motherhood returned to normal and I was able to
as I have done with most things in my leave the hospital. I continued to have
life, by making good decisions and just blood pressure issues throughout the
letting things happen by themselves.  rest of my pregnancy.  I was admitted
about three to four additional times
until I had my son.
My doctor sent me to a perinatal
He was just so perfect and beautiful specialist for my blood pressure issues.  
He said because I had polio and have no
when I first saw him. The first use of my legs, my body was compensat-
ing for being pregnant by increasing my
thought that came to me was, “This blood pressure. He also said that this
was very common for pregnant women
baby is way too cute to be mine. They with paralysis from the waist down. He
recommended that I not carry to full
must have switched him at birth!” term but have a scheduled C-section at
about 35 weeks. He said that going into In the end, it all worked out fine. 
labor and delivering the baby naturally Two days before the C-section, I under-
For me, getting pregnant was not might increase my heart rate too high went an amniocentesis to make sure the
planned. I did it the old fashioned way.  and put the baby or myself at risk. I baby’s lungs were developed enough
There were no visits to the doctor, no ex- would be put under general anesthesia to be delivered. The results of the test
ams, no specialists. I never got to ask the for the C-section. After hearing all this, were good, which meant the C-section
question, “As a woman with a disability, I again sort of just continued on with would proceed as planned. Surgery was
am I able to have a child?” That question my mantra of letting things happen by scheduled at 9:00 a.m. on January 28,
pretty much got answered for me. At themselves. The specialist gave me a 2009. My son, Matthew was delivered
first, I was extremely excited. Then, I more high powered ultrasound of the at 9:53 a.m. He weighed 5 pounds, 8
started asking myself questions about baby and the results were very good.  ounces. I woke up in the hospital room,
how things would go for me during the The baby was doing just fine, which struggled to keep my eyes open after
next nine months. Was I scared? Yes.  helped put my mind at ease. Physically, all the anesthesia, and only managed
Not because I was a pregnant woman the last three months of pregnancy were to do so because I wanted to see my
with a disability. My concerns were just very difficult. To make matters worse, baby so badly. He was just so perfect

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Profile 31

Resources on Reproductive
Health and Planning
• Table Manners and Beyond: The
Gynecological Exam for Women with
Developmental Disabilities and Other
Functional Limitations (http://www.
bhawd.org/sitefiles/TblMrs/cover.html).
Edited by K. Simpson & K. Lankasky (Ed). All
women need to receive regular pelvic and breast
exams. Women with disabilities should have
exams at the same frequency and for the same
reasons as other women. However, women with
functional limitations may encounter a number
of barriers to gynecologic care. The purpose
of this free online manual is to help clinicians
and beautiful when I first saw him. The dropped him, which is more than some provide these services. It was produced under
first thought that came to me was, “This abled-bodied moms can say. There are the auspices of the Women’s Wellness Project,
baby is way too cute to be mine. They lots of other logistical things to consider a collaborative effort between the Regional
must have switched him at birth!” when a baby comes into your life, but I Center of the East Bay and the Women’s Health
All in all, pregnancy was not too guess that’s just what happens whether
Project of UCP of the Golden Gate.
bad. Being totally asleep during delivery you have a disability or not.
seemed to be a breeze, really. I didn’t The truth is, babies are really smart, • Center for Research on Women with
have to do anything! After all the excite- resilient, understanding, and loving. If Disabilities, Baylor College of Medicine
ment with pregnancy, the C-section you show your love, respect, and sup- (http://www.bcm.edu/crowd/). The center’s
and the hospital, it occurred to me that port to them, they will do the same for
Web site provides extensive information on
the real hard part was just beginning you. Granted, he is only 18 months old,
as we brought Matthew home. I think but Matthew “gets” that mom is differ- sexuality and reproductive health for women
my concerns graduated to the worried ent. He knows that I use a wheelchair, with physical and other disabilities, including
stage at this point. I thought about the and to him it’s not a big deal. When he information on contraception, fertility,
months to come when Matthew was a wants to be picked up, he will climb up pregnancy and delivery, parenting, sexual
newborn. I wondered how I would be as on my footrests and I’ll pick him up. If activity, and sexual functioning.
a mother and if I would “perform” up to he wants to show me something and
par with non-disabled moms. I thought he is up the hill in the backyard, he will • Reproductive Life Plans. A Reproductive
even further ahead and wondered how I come down the hill and show it to me. Life Plan is a plan that states a person’s goals
would handle things when he began to He has it figured out more than I do! I about having or not having children now and
walk and run and what I would do if I think when he was about six months old in the future, and how they’re going to reach
couldn’t keep up with him. Would other I told myself that I would allow him to
those goals. It’s based on a woman’s or man’s
kids tease him in school about having be the person he wants to be without
a disabled mom? So many things went letting the insecurities I have about my personal values, goals, and resources. More
through my head. disability get in the way. Matthew seems information about Reproductive Life Plans
In the beginning it truly was easy to be fine with everything so far, so in- and planning forms can be found at a number
because he was so tiny. Wheelchair users stead of worrying about him growing up of sources, including Every Woman California
usually require support when picking as a little boy with a mother who has a (under “Preconception Health Resources – Make
things up, especially if it’s heavy. But disability, I’m going to just focus on him
a Plan” at http://www.everywomancalifornia.
Matthew was so light that it didn’t re- growing up as a little boy. I’m back to
quire a lot of effort. It’s when he became going with the flow again. org), and the Utah Department of Health where
heavier that support became an issue. there is a teen version, “Plan Your Health: Live
Using the edge of a bassinet or crib Mai Thor McIntosh lives with her husband Your Life” (see http://health.utah.gov/mihp/
to support my torso works well when Charles, son Matthew, and stepson Cortland pdf/Teen_RLP_082709.pdf) and an adult
both hands are being used. Luckily, my in St. Paul, Minnesota. version “You’re a Busy Woman” (see http://
hand dexterity is good and I have never health.utah.gov/mihp/pdf/RLP_Adult.pdf).
32 Overview

New Ways of Thinking About Parents with


Intellectual Disabilities
by Bernadette Irwin

Parenting as a right for individuals with Retardation, 1999). The recommenda- mild cognitive limitations have the right
intellectual disabilities is a relatively new tions included the following regarding to have intimate relationships, to get
concept. In the last 40 years, there has the right to parent for individuals with married and to have children and have a
been a paradigm shift in attitudes and mild intellectual disabilities (p. 81): full family life” (p. 82).
practices toward individuals with intellec- • Assure that people with mild cogni- At the June 2010 annual conference
tual disabilities who desire to be parents. tive limitations are able to participate of the American Association on Intel-
Today, the most significant aspect of the in parenting classes while in school or lectual and Developmental Disabilities
national conversation about adults with as young adults. (AAIDD), the first meeting of the
intellectual disabilities who are or desire Parents with Developmental Disabilities/
• Offer...parenting classes for individu- Intellectual Disabilities Task Force was
to be parents is that self-advocates, ad-
als with mild cognitive limitations held. The first discussion item in the
vocates, court personnel, policymakers,
early in the child welfare process. minutes of the task force was “Everyone
researchers, Guardians ad Litem and con-
cerned members of the community are • Help people with mild cognitive has the right to be in a relationship and
actually having that conversation about limitations to identify and network have children.” The recommendations
such a right. Several historical events with natural supports that may exist, of this newly-formed task force were sur-
have brought us to this new place. such as extended families, neighbors, prisingly similar to those in The Forgot-
church members and others who ten Generation. Their recommendations
might provide information, advice or included the following (AAIDD Parents
assistance on parenting issues. with Developmental Disabilities/Intellec-
Parenting as a right for individuals • Increase affordable access to legal tual Disabilities Task Force, 2010):
representation by increasing funds to • Push for legislation to support parents
with intellectual disabilities is a legal services and protection and ad- with DD/ID. The task force members
vocacy services. Tie this new funding felt it was essential to have parenting
relatively new concept. to a mandate to use it for representa- considered an essential life function.
tion of individuals with mild cogni- • Provide strengths-based training to
tive limitations in civil matters, such psychologists since they are usually
as ...parental custody. the professionals who are responsible
One of those events was the convening • Encourage agencies to involve re- for evaluating parents with DD/ID.
of a special task force of The President’s sources experienced in working
Committee on Mental Retardation (now • Examine ways that supports for par-
with individuals with mild cognitive ents with DD/ID can be a component
known as The President’s Committee for limitations in providing assistance
People with Intellectual Disabilities) in of waivers.
with child care and child protective
February 1999. This study group brought services. • Enhance the coordination of the child
together 75 national experts, including welfare and the DD systems.
• Urge the Department of Justice to
adults with intellectual disabilities, to • Push to have a change in the DD Act
aggressively examine cases on paren-
examine the consequences of society’s to identify parenting as a “natural part
tal rights issues under Title II of the
failure to adequately support individuals of family support.”
Americans with Disabilities Act.
with mild intellectual disabilities who It is also significant that the United
were living marginal lives. This task force • Educate child welfare agencies, fam-
ily courts and others that individuals Nations is addressing parenting by in-
examined the lives of young adults with dividuals with disabilities as a “right” in
intellectual disabilities with respect to with cognitive limitations can be com-
petent and effective parents, and how a treaty that is currently under develop-
areas of everyday life and made recom- ment in the Convention on the Rights of
mendations to the President. Among the best to support these individuals.
Persons with Disabilities (United Nations,
areas examined was the right to parent. 2007). The United States is participating
The report also stated, “People with
The results of these discussions were in the development of this document
mild cognitive limitations can be caring,
presented in the document The Forgotten and when the U.S. signs this treaty, it will
concerned and competent parents if the
Generation – 1999 Report to the President be obligated under international law to
appropriate supports and service are in
(President’s Committee on Mental take “effective action” to eliminate dis-
place” (p. 81). It also said, “People with

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Overview 33

crimination, and to render “appropriate • Facilitating community partnerships • The TASP Web site (http://www.
assistance” to persons with disabilities, and networking. achancetoparent.org) for informa-
including parents with intellectual and • Offering educational opportunities. tion about membership, conferences,
other developmental disabilities under and ways to connect with others on
• Engaging in advocacy and ongoing
Article 23. This Article states that signa- this area of interest.
system change to achieve social
tors “shall take effective and appropriate • The International Association for
justice.
measures to eliminate discrimination the Scientific Study of Intellectual
against persons with disabilities in all • Partnering with self-advocates to
Disabilities, Special Interest Research
matters relating to marriage, family, par- promote self-determination.
Group on Parenting with Intellectual
enthood and relationships.” • Promoting evidence-based parenting Disabilities (see http://iassid.org,
An additional milestone in the para- skill assessments. under SIRGs select “Parenting”).
digm shift regarding parents with intel- • Developing and endorsing evidence- • The Healthy Start (Australia) Web
lectual disabilities occurred as the result based curricula for training. site (http://www.healthystart.net.au)
of a two-day planning retreat in 2009 in
• Honoring family autonomy, self- to see their national strategy for serv-
which 12 individuals from Canada and
determination and parent strengths. ing children of parents with learning
several U.S. states came together to de-
• Encouraging natural supports, com- difficulties.
velop a strategic plan to formally address
the needs of parents with intellectual munity acceptance and inclusion. • Publications by three of the leading
disabilities. This meeting resulted in the • Developing individualized supports researchers on the topic of parents
founding of The Association for Success- that utilize evidence-based practices. with intellectual disabilities: Dr.
ful Parenting: Enhancing the Lives of Alexander Tymchuk, Dr. David
• Consulting with partners in child
Families When Parents Have Learning McConnell, and Dr. Maurice
welfare, early intervention, educa-
Difficulties (TASP). During the retreat, Feldman.
tion, health care, disability services
the participants developed TASP’s and family support. • The Web site of Through the Look-
Mission Statement (The Association for ing Glass (http://www.lookingglass.
• Working within interdisciplinary
Successful Parenting, 2009): org), one of the first agencies in the
teams to individualize services.
We are dedicated to enhancing the U.S. to serve parents with disabilities.
• Establishing and raising quality stan-
well-being of at-risk parents with There are many opportunities for
dards in assessment, training, service
learning difficulties and their chil- top-down (social policy) and for bottom-
and research.
dren. This primarily includes parents up (grass-roots/community) action and
who may be identified as persons with • Promoting and conducting research.
conversation to enhance the lives of
intellectual disabilities or borderline Advocacy for the rights of individu- families when a parent has intellectual
intellectual functioning. als with intellectual disabilities with disabilities. I encourage you to explore
It also created the following Guiding regard to parenting appears to have the field, and keep the action and con-
Principles of TASP: reached a critical mass. Local, state, versations moving forward.
• We recognize that family life is national, and international organiza-
References
complex. tions and agencies are addressing the AAIDD Parents with Developmental Disabilities/Intellectual Disabilities
needs and challenges of parents with Task Force (June, 2010). Meeting minutes and recommendations.
• We move forward in step with self- Unpublished.
intellectual disabilities. Public and pri-
advocates in this shared work. President’s Committee on Mental Retardation (1999). The forgotten gen-
vate health care, education, housing, eration: 1999 report to the President. Washington DC: President’s Com-
• We acknowledge that all families need welfare, vocational, mental health and mittee on Mental Retardation, Administration for Children and Families,
U. S. Department of Health and Human Services. Retrieved 7/22/10 from
support and rely on inter-dependent other social services, child and adult http://www.acf.hhs.gov/programs/pcpid/docs/mr_1999_final.pdf.
networks. protective services, and the juvenile The Association for Successful Parenting (2009). Mission, principles, how
we do it. Retrieved 7/22/10 from http://www.achancetoparent.org.
• We accept that separation from par- and adult court systems are beginning United Nations (2007). Convention on the rights of persons with disabili-
ties. New York: United Nations Enable. Retrieved 7/22/10 from http://
ents is sometimes in the best interest to recognize the need for coordinated, www.un.org/disabilities/default.asp?id=259.
of children. comprehensive and sustained services
• We believe that our expertise and re- for these parents and their children. Bernadette Irwin is Co-President of The
sources may also benefit parents with So, in 2010, as we are in the midst of a Association for Successful Parenting, and
other cognitive challenges and the paradigm shift regarding parents with Assistant Department Director with Family
people that support them. intellectual disabilities, where can peo- Support Services at The Kennedy Krieger
ple go to learn more about the emerging Institute, Baltimore. She may be reached at
TASP has also identified the following as practice of supporting parents with
the practices it uses in its work: 410/298-2645 or irwin@kennedykrieger.
intellectual disabilities? Here are some org.
suggestions:
34 Continuation

[Wilkie, continued from page 1]


ing my dad if I was different. He simply to handle the topic and will convince
me, they were able to see that my situa- said, “You are a lot different than she is.” themselves that they know about it
tion was not all that different from other Likewise, when I was in junior high already rather than have an honest con-
young people. I worked up the courage all year to ask versation with an adult.
My disability was not the only chal- a girl at my bus stop out for ice cream. When the book Where Did I Come
lenge I had growing up, however. When When she agreed to meet with me and From? (a book about reproduction)
I was five my entire world was turned we found ourselves eating ice cream and appeared when I was 13 years old, there
over – my mom died. My dad had always not talking very much, she broke the was no way that I was ready for the con-
been a great constant in my world, but silence by saying, “Nick, I don’t think versation my dad tried to start about it.
how was he supposed to deal with the we can see each other again. Isn’t there I remember it being very difficult for me
loss of my mom and keep me grounded someone else like you that you would be to take the book seriously because of the
in life? To this day, this situation still interested in dating?” I don’t think that subject and the cartoon format. I was not
shakes me. We pressed on though. The it initially occurred to me that when she mature enough to handle the topic. But,
difficult circumstances gave us tools said “like you” she meant “with a disabil- I did take a look at it when I was on my
to use. I found independence in doing ity.” Interestingly enough, the answer to own; that allowed me to take in the
things on my own because my dad would her question was no. There weren’t any information, and then I approached him
not do everything for me. This “tough other students with disabilities that I with questions on my own terms. In my
love” was very hard on both of us at was interested in dating. The only other experience, I gathered a lot of informa-
times, but I firmly believe that I would person who had a disability at my school tion about sex from school, friends and
not be who I am without it. was my good friend Josh; he and I had the world around me and then I would
My experiences in school and with been great friends since preschool, but I bring up questions with my dad. I believe
peers also shaped my identity. I believe knew I wasn’t interested in dating him! this helped break things down for me
As I dug a little bit further in talking and I did not feel like I was having a big
with her I found out that she had numer- conversation. Instead, I asked questions
ous other concerns about my disability; here and there and pieced things togeth-
Male youth, myself included at the most of all she was concerned that I er. This made the nature of the discus-
would pass my disability on to children sion less anxious and more spontaneous.
time, are often not mature enough to that we would have. Keep in mind that There have been and there will always
I’m still sitting there with my ice cream be assumptions about my abilities, about
handle the topic and will convince in hand. Until this experience I had the things that I can do. But the only ones
never thought how my disability would that I have to believe are those that I tell
themselves that they know about it affect others in my life. myself in the mirror. Today, I have a girl-
In situations like these I was able friend, Jackie, and we have been together
already rather than have an honest to have real conversations about my for almost three years. She’s wonderful.
life with my dad. It was through these To my knowledge she doesn’t have any
conversation with an adult. conversations where I learned that it was diagnosed disabilities, and she does
my responsibility to be knowledgeable enjoy ice cream!
about myself and explain my situation I owe a lot of thanks to my dad for
to other people. helping me become that confident guy
the first time I actually felt labeled When it came to my identity, disabil- in the mirror. Not a week goes by that I
“different” was when I was in about ity, and sexuality I found that I was the don’t talk to him about my life. We are
fourth grade. I remember leaving my driving force behind a lot of conversa- very fortunate to have the relationship
elementary classroom (my school day tions that we would have. My dad was that we do; I love him for it. Talk soon,
was not all mainstream classes yet – in always available to talk to, and there Dad!
the afternoons I was attending some wasn’t a conversation that was out of
special ed classes) and one of my friends bounds. There were conversations that
went up to the teacher and asked, “Why David’s Perspective
were challenging, and talking about sex
can’t Nick stay in our class all day?” Now, was definitely one of those; but those I do not remember talking specifically
I don’t know if the teacher thought that challenges were not unlike any other about sex with Nick – I’m old now, how-
I couldn’t hear her, but I remember her father-son talk on the topic. ever. I do remember that if he asked a
saying, “Oh, don’t worry about it, he’s It is hard for men in our society to question I would answer the question,
just different.” Now I couldn’t have been talk about sex. It may be part of our cul- or if I didn’t know the answer I promised
more than 10, but I knew what “different” ture. And male youth, myself included to find the answer, and did. I believed
meant. I remember going home and ask- at the time, are often not mature enough answering his questions as they came up
[Wilkie, continued on next page]
Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
Continuation 35

[Wilkie, continued from page 34] [Walker-Hirsch, continued from page 5] [Samowitz, continued from page 19]
was easier for him to digest than to have • Provide both medical and adult Sexual Behaviors
some big discussion where only ten per- slang terminology related to sexual
cent would sink in, kind of like taking The last issue I want to address is re-
anatomy, and discuss when and with
too much vitamin C – your body can garding modern technology and sexual
whom each kind of language is ap-
only handle so much and the rest goes needs. Some of the people we support
propriate to use. Remind your child
off as waste. try to meet their sexual needs through
that sexual words must not be used
I do remember believing strongly he the Internet and/or 900 numbers. We
to express anger or hurt another’s
wasn’t any different than anyone else are very concerned that they might be
feelings.
where sex was concerned, or in any oth- exploited or abused due to their cogni-
• Empower your child by providing tive limitations and possible emotional
er life experience for that matter. Sure, opportunities for making decisions
he may have to approach things a bit vulnerabilities. Our policy states that we
that grow with the maturing child, “Ensure that the treatment team is aware
differently, but I/we focused on building decisions such as what to have for
self-confidence and concentrating on of consumer’s use of technology (such as
lunch, what color sweater to wear, accessing personal ads, calling sexually
the things he could do really well, and and who to invite to a movie.
less on things he had trouble with. I fully explicit 900 numbers etc.) in fulfilling
expected him to have girlfriends and • Know the signs of sexual abuse and sexual expression.” Also that we “limit
date like most other adolescent males. It know what to do if you suspect your the use of the Internet and/or monitor
never occurred to me that he wouldn’t. child has been a victim (for more telephone calls if there is probable cause
It was obvious early on that he wasn’t see Impact: Feature Issue on Violence that the person is engaging in illegal
going to be a sports hero, so we did oth- Against Women with Developmental activity.” Because the chat lines also have
er things like camping and canoeing to Disabilities at http://ici.umn.edu/ per-minute calling charges, we also try to
give him different experiences he could products/impact/133/default.html, keep a close eye on the expenditures of
enjoy, build confidence in, and become or go to http://qualitymall.org and those who use them and catch any finan-
good at. He got really good at playing search by “sexual abuse”). cial problem as early as possible.
Nintendo, and was very confident he • If needed, do not hesitate to get pro-
could hold his own with the neighbor- fessional help for your child in this Conclusion
hood kids. aspect of development.
I also knew that the world wasn’t In summary, I hope that service provid-
• And above all respect your child’s
going to change for Nick, so we needed ers and family members understand the
sexuality as he or she moves toward
to find ways for him to fit in and build importance of supporting people with
maturity and into a safe, responsible,
confidence. In my professional life I had ID/DD regarding their sexual needs and
and satisfying adult life.
seen too many families giving their kids desires. Unfortunately, far too many
with disabilities what I considered to agencies are not willing to provide sup-
be too much support. I was worried if Conclusion port, and rather try to repress a basic
I did that with Nick it would hinder his human need. If we are truly person-
When sexuality education is provided centered, then sexual needs, which are an
ability to become independent. I was to children and teens with intellectual
actually accused of being mean to him integral part of the human personality,
disabilities in a way that they can un- should be reflected in service plans and
when he was young because in the eyes derstand and use, their teachers and
of some I didn’t cater to him enough. in a coherent, positive agency policy.
families have reported improved social
Nick has a great personality and that is behavior and expect they will be safer References
very attractive to everyone: girls, boys, from sexual ridicule and exploitation. Ames, R. & Samowitz, P. (999). Viewpoint. [Published by AAMR].
men and women. So armed with a great When planning for a child’s educational YAI/National Institute for People with Disabilities (December 2004).
personality, confidence in himself, and and social future, it is crucial to include
Relationships and sexuality policy. New York: YAI.
good looks, I believed he had the tools to meaningful sexuality education.
eventually go on to have strong relation- Perry Samowitz is Senior Director of
ships with the opposite sex and others Education and Training at YAI/NIPD,
Leslie Walker-Hirsch is a Social Develop-
of all ages. And he has. New York, New York. He may be reached at
ment and Sexuality Consultant based in
212/273-6127 or psamowitz@yai.org. For
Santa Fe, New Mexico. She may be reached
Nick Wilkie is a Transition Specialist at information on obtaining the YAI Relation-
at 505/995 9928 or 914/953 8027;
the Metropolitan Center for Independent ship and Sexuality Policy, as well as the YAI
lesliewh@computer.net; or at www.
Living, St. Paul, Minnesota. He may be tools to determine consent for sexual activity
lesliewalker-hirsch.com. She is editor of
reached at 651/603-2018 (phone/fax) or and videos on relationships and sexuality,
“The Facts of Life...and More: Sexuality
nickw@mcil-mn.org. David Wilkie lives visit http://www.yai.org/resources or call
and Intimacy for People with Intellectual
and works in St. Paul. 212/273-6100.
Disabilities” (Brookes, 2007).
Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.).
(Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
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Impact
In This Issue... Feature Issue on Sexuality and People with
Intellectual, Developmental and Other Disabilities
Volume 23 · Number 2 · Spring/Summer 2010
• Self-Advocates Speak Up About Sex Managing Editor: Vicki Gaylord
• Sexuality Meets Intellectual Disability: What Every Issue Editors: 
Sue Fager, PACER Center, Bloomington, Minnesota
Parent Should Know David Hancox, Metropolitan Center for Independent
Living, St. Paul, Minnesota
• Destination – Adulthood: Preparing Your Child for Carol Ely, Institute on Community Integration, University
Puberty and Adolescence of Minnesota, Minneapolis
Pam Stenhjem, Research and Training Center on
• Parents Talk About Sexuality and Disability: Community Living, Institute on Community Integration,
University of Minnesota, Minneapolis
Highlights of PACER Cross-Cultural Focus Groups Impact is published by the Institute on Community
Integration (UCEDD), and the Research and Training
• Sexual Expression for Adults with Disabilities: Center on Community Living and Employment, College
The Role of Guardianship of Education and Human Development, University of
Minnesota. This issue was supported, in part, by Grant
#90DD0654 from the Administration on Developmental
• A Sexuality Policy That Truly Supports People with Disabilities (ADD), US Department of Health and Human
Disabilities Services; and Grant #H133B080005 from the National
Institute on Disability and Rehabilitation Research
(NIDRR), US Department of Education.
• Sex, Disability and the DSP: Ethically Supporting
The views expressed are those of the authors and do not
Sexual Choices necessarily reflect the views of the Institute, Center or
University. The content does not necessarily represent the
• People with Disabilities and Federal Marriage Penalties policy of the US Department of Education or the US
Department of Health and Human Services, and endorse-
• New Ways of Thinking About Parents with ment by the Federal Government should not be assumed.
For additional copies contact: Institute on Community
Intellectual Disabilities Integration, University of Minnesota, 109 Pattee Hall,
150 Pillsbury Dr. SE, Minneapolis, MN 55455
• Personal stories, resources, and more 612/624-4512 • icipub@umn.edu • http://ici.umn.edu.

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