sex and down syndrome

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I think we should be talking more about sexuality and Down syndrome, talking more about sex and Down syndrome. First, I want to talk a little about two nuggets that I feel address  this subject most wonderfully.

Yo Tambien

I watched the Spanish movie, “Me Too” (- Yo Tambien). recently (available on Netflix). It’s about a man with Down syndrome who is looking for love and finds it with his coworker. His coworker does not have Down syndrome and this causes complications in their love story.

Within this lovely, thoughtful movie is another story – one of a couple, both with Down syndrome – who are trying to consummate their love for one another. The girl’s mother is treating her as if she’s a child (- she’s not; she’s 24 years old). They end up running away and – well, I think you need to watch it yourself. It’s on Netflix.

This whole movie kicked me in the gut and had me sobbing like a small child. It perfectly expresses what I would imagine it would mean to have Down syndrome and want love – as all people want love.

Life With a Superhero

This book has the worst title but I think it’s my favorite memoir of a parent of a person with Down syndrome. It’s my favorite because, beyond the author’s excellent writing, her son is a sexually active man living with his girlfriend when she leaves us.

This book is not the more-typical story of a parent coming to terms with a Down syndrome diagnosis, it’s not about the first 5 years of Michael’s life as much as it about his entire unfolding. That includes sexuality, masturbation and losing his virginity.

And I like that. I think all parents of a child with Down syndrome should be reading this book. We talk a great deal about wanting inclusion for our kids, about fighting for it. We talk about discrimination, about how we want our children to grow up and BE HAPPY.

Love and sex are a big part of being happy when you reach adulthood. That’s just a fact. We are sexual creatures who were given our parts right along with our feelings for a purpose: to use them.

Our children are going to grow up, they will become adults with Down syndrome. And just as adults with Down syndrome currently are, they will people who are (hopefully) sexual; people who enjoy that aspect of life and find fulfillment therein. People who love – both emotionally and physically.

 People with disabilities are sexual too

My feelings on this are complicated. As a person with a disability who “passes” as non-disabled, I despaired of ever finding a partner who would love me.

Not just tolerate me; love me.

I thought it would be easier in some senses to be more visibly disabled – like a person with Down syndrome with clearly recognizable features – or like a person who uses a wheelchair. A visible disability seemed straightforward; direct, an automatic calling card. Like me or don’t. With a non-visible disability, it seemed to me that someone might love me up until they realized how disabled I really am, then BAM! that “love” would go out the window.

I don’t think it’s necessarily easier anymore.

I think one of the biggest battles I’ve seen my friends with visible disabilities fight is one of being seen as a sexual person POINT BLANK. Forget about the automatic calling card; it seems that most people with visible disabilities are shoved into this childlike box  in which they are not even seen as having sexual needs or wanting love. They are seen as children, or as castrated adults or adults who are almost monastic, saints in their pure selves….

Can you take a step inside those shoes and just imagine how that would feel? To be a sexual person who desires love and to be viewed by the world as some kind of saintlike, sexless child?!

That would suck on a level that I can’t even wrap my head around.

Yo Tambien – the movie, “Me Too” gets to the heart of that and I love it for that honesty even while my heart breaks for those who experience that reality.

Life with a Superhero is inspiring to me, as there is an example of a man with Down syndrome who is being a sexual man, enjoying that part of life and in love with a person who loves him back.

Which is what I want for my daughter with Down syndrome.

Which is want for all of my kids.

Heck, which is what I want for the whole world.

Read More:

Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality

When Young People with Intellectual Disabilities and Autism Hit Puberty: A Parents’ Q&A Guide to Health, Sexuality and Relationships

Sexuality and Intellectual Disabilities

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10 Comments

  1. I think you wrote that really well. I consider this a topic of importance, and we forget that. We focus on life skills, academics and all of those things – but sometimes forget the social skills of love and relationship. Yet, it’s important. Because sexuality is an important part of life.

  2. I’ll sing Kumbaya with you. Such a great post. Thanks for putting this out there. I will definitely check out that movie!

  3. Kellie Vann says:

    Wow. Looks like I have some movies to watch. Thanks for putting this out there.

  4. Powerful, Meriah! Yes, you are writing for Moses (and others with “visible disabilities”) It’s a very hard place.

  5. The Canadian Down Syndrome Society has just updated and re-released their guide to sex & relationships. It assumes that all people are sexual beings, and is a great resource for youth and young adults and the people who love and support them (Mind and Body: Answers to Your Questions). Of course by the time Moxie gets up there, I am sure they will have updated it some more! See also all the great work done by Dave Hingsburger. See https://app.etapestry.com/cart/CanadianDownSyndromeSociety/default/item.php?ref=548.0.26836005

    1. THANK YOU so, so much for sharing this link! I’m going to add it to a few sites.
      Thanks again

  6. I’ll share a link (hope you don’t mind): http://www.band.uol.com.br/diadasmaes/conteudo.asp?ID=100000418774

    It’s about a woman, who happens to have down syndrome, that has a normal sex life with her husband and gave birth to a child (typical) three years ago.

    I know you lived in Macau, so you maybe understand portuguese. But I would be glad to translate it if needed, just let me know!

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