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Impact, Volume 23, Number 2, Spring/Summer 2010

Impact, Volume 23, Number 2, Spring/Summer 2010

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Published by nysarcinc
The latest issue of Impact, a newsletter published by the Institute on Community Integration (UCEDD) & Research and Training Center on Community Living on the topic of sexuality and people with intellectual, developmental, and other disabilities.
The latest issue of Impact, a newsletter published by the Institute on Community Integration (UCEDD) & Research and Training Center on Community Living on the topic of sexuality and people with intellectual, developmental, and other disabilities.

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Published by the Institute on Community Integration (UCEDD) & Research and Training Center on Community Living
Impact
Volume 23 · Number 2 · Spring/Summer 2010
Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities
From the Editors
 As this Impact issue is about to be published, oneo the pioneers in sexuality education or personswith disabilities has just passed away. Her nameis Winired Kempton and one o the reasons thisImpact issue is able to provide the depth and breadth o inormation it does is that she wasamong those who, over 40 years ago, publicly acted on her conviction that individuals withintellectual, developmental and other disabilitieshave the right and need to receive inormationabout sexuality. The tools she created or sexuality education (including a dozen books as well as sexuality education programs she authored or co-authored) approached individuals with disabili-ties as ully-ormed people with an intrinsic right to know about and participate in this part o thehuman experience. She was a genuine advocate inthe truest sense, and will be missed.Today, other pioneering voices are carrying onthat advocacy and education work, and in thisissue o Impact readers will have the opportunity to hear rom some o them as they talk about therange o issues that are part o sexuality in itsullness. It’s our hope that the articles gathered here will provide inormation and inspirationthat urther support the right and opportunity or people with intellectual, developmental, and other disabilities to understand and express thisessential dimension o human lie.
What’s Inside
OverviewsPersonal ProlesResources
 As Nick (let) was growing up, he and his ather David (right) ound ways to have meaningul conversations about lie,including sexuality, which helped Nick become a condent man who has strong relationships. See story below.
 [Wilkie, continued on page 34] 
Identity, Disability, and Sexuality: Reections From a Son and His Father 
by Nick and David Wilkie
We – Nick and David – are a colorul son and ather duo who reside in the Twin Cities. We both work in the human services eld. David (dad) works in health care and Nick works or the Metropolitan Center or Independent Living. For this article we were asked to refect onthe ather and son conversations about sexuality we’ve had over the years. In order to write it we really needed to do some thinking about who we are, and the philosophical approach wehave taken toward the topic and our lives. These are our refections. We hope you enjoy them.
Nick’s Perspective
I eel very ortunate to have grown up in a household where my dierences and chal-lenges were not the frst thing everyone talked about. This was a key part o the philos-ophy that my dad took on in raising me. When my dad would introduce me to peoplehe would say, “I would like you to meet my son Nick,” and not, “I would like you tomeet my son with a disability.” This was crucial in my identity development. To havethat separation between me and my disability made all the dierence in the world.Carrying that separation throughout the rest o my amily and riends was challeng-ing at times, but overall it proved to be very successul. Once amily and riends sawthat my disability did not change the way my dad saw me, or the way that he treated
 
2
Who rst explained sex to you? 
•Roy:Myparents,thenmyfriendsin
much, much more detailed discus-sion.
•Amber:Ilearnedaboutsexinasex
education class by watching a moviein school, in 4
th
or 5
th
grade actually. Iwas mainstreamed.
•Rebecca:Ihavenoidea.Inschool,
it was like child development classor I want to say maybe in 6
th
gradewe watched a movie. I don’t know i 
itwasaboutsex,butIthinkitwas
about reproduction.
•Julie:MyMomdidtalktome.Itwas
hard or her. It was kind o awkwardor me.
•Molly:Mygrandmatalkedtomeaboutsex.Idon’tknowwhy.Itwas
awkward though.
•Elizabeth:Igotthetalkfrommy
brother. It was awkward, embarrass-ing, but it was helpul.
 Sel-Advocates Speak Up About Sex 
compiled by Karen Topper and Katherine McLaughlin
 Members o the Green Mountain Sel- Advocates in Vermont recently held adiscussion group about sexuality or the purpose o sharing their thoughts and experiences in this article. Below are their responses to a number o questions about the messages they received about sexualityover the years, and why they think sexualityeducation is important. This is a record o the conversation as it occurred, and in some places they respond to one another, as well as to the questions. Their real names havenot been used at their request.
•Justin:Igotthetalkfrommycousin.
He said this is what it is, now go do it.
•Gabrielle:Seriously,I’venevergotten
the talk.
•Molly:I’veseenhavingsexonTV.•Justin:GoontheInternetandyoucanndit.YouwatchanychannelonTV
and you can see it. It is on soaps.
What were the messages you got about sex rom adults when you were growing up? 
•Jennifer:Don’thavesex.AndIagreewiththem.Don’thavesex.Youwillgetpregnantanddie.Myparentswouldsay,“Ou,ou,gross,sex.”
 
Andrew:You’renotreadytohavesex.
 
Gabrielle:Makesureyouareprotect
-
edbeforehavingsex.
 
Andrew:Youcan’thandlehavingsex.
 
Molly:Myfavoriteoneis,don’thavesexuntilyougetmarried.
 
 Justin:Youarenotnanciallystable.
 
Clara:Likeifaguyhasadiseaseinhis
body, you have to be careul o that.
 
Amber:FromthesexualityclassItook
last year, I learned to come right outand say it – “get tested” – because youdon’t know what is out there.
 
Ida:YoucangetAIDSandHIV.When
I was in 6
th
grade we did a unit on
AIDSandHIV.Thebestwaytoavoidthatisabstinence,nottohavesexualintercourse.TheydiditonHIVandRyanWhiteandhemophilia.
 
Rebecca:ActuallyIwastoldifIkissed
somebody I would get pregnant.
Did you get any positive messages? 
•Roy:Thatiswasokayandnatural.•Kevin:Myparentswerealwaystelling
me it is a great, great thing, but becareul with it.
•Andrew:Thatitisfun.•Elizabeth:Myaunttoldmeitwas
rereshing.
•Henry:Ifyouhavesex,doitbehindcloseddoors.Makesuretheylockand
nobody can come in.
•Ida:Pubertyispartofbecomingan
adult.
•Rebecca:Yes,nooneexplainedpu
-berty to me. I had to learn it by mysel.
•Ida:Especiallyforsomeofusfor
whom it was a surprise and we got it
early.MyperiodcameearlyandIsaid
what is this crap?
•Rebecca:Minehappenedinamovie
theater. I went in the bathroom and Isaid what is this mess?
•Clara:WhenIwasyoungIreadthis
book about becoming a woman. Ittalked about your eelings and yourbody.
•Adam:Lookingbackonthemessages
I got… Wrap your dick.
•Jennifer:Idon’tgetit?
 [someoneexplained it meant putting a condom on your penis] 
.
•Adam:OnethatIgotthatwasreallyhelpfulwassexismorethanjustinter
-course.
•Andrew:Itisnotallaboutsex.
 I learned about sex in a sexeducation class by watching amovie in school, in 4th or 5th gradeactually. I was mainstreamed. I got my inormation rom a special ed class, but other kidswere jealous o me because o theinormation I got. It was better than the regular classes, whichwere just about diseases, that’s it.
Overview 
Retrieved rom the Web site o the Institute on Community Integration, University o 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 o Minnesota, Institute on Community Integration].
 
3
Did you get any positive messages, like you look really attractive, hot, you’re sexy? 
•Adam:Notasmuchinhighschool.•Henry:Notreally.•Molly:ThisguytriedtopickmeupandsaidIwasgoodlooking.AndI
don’t think I am good looking.
How did you eel about the messages you got? 
•Molly:ItfeltlikeIwaskid.Iam23
years old and I can do whatever thehell I want.
Did you ever notice i the messages you got were diferent than the messages given to your sisters or brothers? 
 [A resounding yes! Even rom people whohad been quiet up until this time.] 
•
 Justin:JustbecauseIhaveadisability
it doesn’t mean I can’t have a normalrelationship.
 
Molly:Iknowmysisterandbrother
got the talk. They don’t treat me likea normal human being.
 
Amber:Thatisbecauseyouhavea
disability and they think you are not.
 
Elizabeth:Icantellyou,nobodyis
normal in this world.
 
Andrew:Whatisnormal?
 
 Justin:Itisadialonyourwashing
machine.
 
Andrew:Normalisjustbeingyour
-sel.
When people talk to your brothers and  sisters and not you, what message doesthat give? 
•Gabrielle:Theywantedmetolearnit
on my own.
 
Ida:Theywanttoshelteryou,protect
you.
 
 Jennifer:Alltheysayis,“Ou,don’tdo
it.” Thanks or helping me.
 
 Justin:Theywanttosaveyouand
shelter you. They want to be themomma and poppa bear.
What was the most important thing you learned about sex rom adults when youwere growing up? 
•Elizabeth:Waituntilyouaremarried
or the frst time.
•Gabrielle:Ifyouwantit,useprotec
-tion.
 
Clara:Findagoodguy.Choosethe
right one and don’t do it spur o themoment.
 
Adam:Sexismorethanintercourse.
 
Andrew:Makesureyouarereadyfor
it, ready or the responsibility.
What do you wish adults would’ve told youbut didn’t? 
•Gabrielle:IfIhadknowneverything
that I know now, I probably wouldhave waited.
 
Ida:Iwishtheyhadgivenmeanintro
-duction to puberty.
 
Adam:TheonlythingIcanthinkof
that I would have wanted to learn atan earlier age is what a vasectomyis. I don’t have other regrets becausepeople did talk to me about 90% o it.I got my inormation rom a special
edclass.Butotherkidswerejealous
o me because o the inormationI got. It was better than the regular
classeswhichwerejustaboutdiseases,
that’s it.
 
Roy:Theoppositeofwhattheytold
me. They told me “don’t do it,” “becareul,” and “keep it in your pants.”Instead o making it so vague withone phrase sentences, say “It is okay.”
Kindofgivemoreofanexplanation.
Why do you think people with disabilitiesneed sexuality education? 
•Roy:Sowecanlearntohavehealthy
relationships.
 
Rebecca:Soweareabletomake
inormed choices.
 
Elizabeth:Sowecanpicktheright
person.
 
Adam:Forhelpwiththetoughest
part o the relationship, making itlast.
 
Gabrielle:Sowecanbesafe.
 
Andrew:Becauseweallhavedesires/
needs and that’s okay.
•Clara:Togetcorrectinformation.
 
Kevin:Togetresources/toolstomakehealthysexualchoices.
 
Roy:Sothatpeopleknowtheirrights.
 
Molly:Sopeoplewithdisabilities
don’t put themselves in bad situa-tions.
 
 Julie:Sowewillknowhowtoprotect
ourselves.
 Karen Topper is the State Coordinator   or Green Mountain Sel-Advocates, Montpelier, Vermont; she may be reached at topper@sover.net. Katherine McLaughlin isa consultant on sexuality and disability; shemay be reached at 603/499-1735 or http:// www.disabilityworkshops.com. Karen and  Katherine, along with Jessica Lindert, haveco-authored a curriculum titled, “Sexuality Education or Adults with Developmental  Disabilities” published by Green MountainSel-Advocates and Planned Parenthood o Northern New England (PPNNE). For ordering inormation visit http://bit.ly/ppnnecurriculum or call PPNNE at 800/488-9638.
 My parents were always telling me it is a great, great thing, but  be careul with it.
Overview 

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