What’s the question children with disabilities are never asked?

A couple of weeks ago, in Tierra del Fuego (at the very tip of Argentina ) I met with a group of teachers and parents of children with intellectual disabilities to talk about sexuality and disabilities.

My plan was to discuss with them the main issues, identify a topic that was of most concern to them and work together to create an educational resource that could be circulated amongst other parents in the same situation to think and learn about their children’s needs in this area.

It is tough for parents of children with disabilities to accept and understand their children´s needs and interests in the area of sexuality and pleasure. They are afraid, because accepting these needs, desires and fantasies implies that their children are growing up and growing up for a child with intellectual disabilities brings up a lot of challenges and fears for them and for their families.

There is one question that all children are asked, except children with disabilities. That question is: what are you going to be when you grow up?

What are you going to be when you grow up?

It is a question that is essential if any child is to dream about the future. And everyone needs to be able to dream about the future if they are to actually have one. So why don´t we ask children with disabilities this crucial question?

I was explaining this to the group of parents in Tierra del Fuego last Thursday, when one of the mothers interrupted me:

“My daughter says that when she grows up, she wants to be a ‘grown up’”.

I was surprised.

— “What disability does your daughter have?” I asked.

— “Victoria has Down Syndrome. She is 16”.

— “Well, she´s very clever,” I said to the mother. “In a very, very unique way.”

It was like when you are walking through a park, absorbed in your own thoughts when suddenly the branch of a tree comes crashing down. The effect of a discovery almost always needs someone who can register it for what it is. Like Newton and the apple.

What this girl is saying is simply that she will grow up — whether her mother likes it or not. And at 16, she will be an adult very soon — in just a couple of years.

She badly needs information about and the chance to ask questions about the changes going on in her body. She needs the opportunity to exchange with peers about the changes going on in her feelings.

And she needs the privacy to be able to explore her own curiosity and desire for new experiences.

For parents to be in denial of that is a big mistake. Preventing Victoria from accessing the tools to understand her sexual desires and her sexual fantasies will actually make her more vulnerable to the risk of being abused.

Let me share with you the draft version of the education resource (click on the images to see it larger) that we have produced along with this group of parents and is now being tested in Argentina.

It was lucky that Victoria’s mum was prepared to listen what her daughter said to her.

And I am glad that we were able to listen to what she said, as an illustration of what many children with intellectual disabilities would like to say to their parents. And then use the statement as an opportunity for ourselves and for other to learn and be better prepared to respond.

You always learn if you are prepared to listen. The thing is that in the area of disability we tend to not listen. People look at disabilities and are often predisposed to see weaknesses, problems, and needs. Consequently, we are kind of programmed to help, to assist, to rehabilitate but not to listen and much less to learn.

It is perhaps the time to change the focus.

*Names have been changed.

Photo: Andrea has been photographing her beautiful daughter Tilly since she was tiny and posting on Flickr.com. We are grateful that she allows free use of her photos, and recommend you check out her wonderful work.