Separate is not equal

Last night we have a visit from a woman from Community Living. We were signing Ben up for an after-school respite program that runs once a week. Ben and two other students from his class will go to a nearby community centre that offers an after-school program of games, sports and arts for youth with developmental disabilities.

I’m grateful for this program – and how Community Living has planned to have sign-language interpreters and one of the sign-language assistants from Ben’s school participate. But I was disappointed that it is an entirely segregated program.

It reminded me of a study I’d just read about of 653 people with mild and moderate intellectual disabilities in the Netherlands. It was published in the Journal of Intellectual Disability Research in January. It found that while most participants had work or other daytime activities, social contacts and did things like go to a restaurant or movie for fun, the majority have almost no contact with people without intellectual disability. “From a human rights point of view, it is undesirable that people with intellectual disability have lower levels of community participation,” the authors note.

It seems that this segregation starts early in programs that don’t include children with and without disabilities. It also seems to me – with typical students needing to fulfill community service hours in high school – that there could be ways to involve students without disabilities in these programs.

For those of you who read our December print interview with Amy Baskin about preparing for the move to adulthood for youth with developmental disabilities, you’ll remember Amy said the first step was to “find out what services for adults with developmental disabilities exist in your area. Ask your children’s treatment centre or call Community Living to found out who manages developmental services."

I’ve been meaning to do this for Ben, but hadn’t taken the plunge. I was pushed along last night when the Community Living lady said one of her colleagues could come out to talk to us about developmental services. "After all, he is almost an adult," she said, noting he was turning 17 at the end of this month. An adult?

There is a part of me that doesn’t want to get the information because I don’t think I’ll be happy with the options. But I know I need to follow through!

I thought this New York Times story about Arthur and Friends, a project of three hydroponic greenhouse where adults with developmental disabilities learn to produce ‘dirtless’ produce for farmer’s markets and restaurants was interesting. The founder of the program had a nephew with Down syndrome who was looking for more meaningful work: “When he told his aunt how bored he was, toiling in a sheltered workshop popping dog treats like pigs’ ears into plastic bags for five hours a day, they began discussing how he might find a more rewarding job.”

Again, wouldn’t it be great if the program was somehow made inclusive?

On another note, some of you may have been following this story of a family in the UK with a six-year-old daughter who requires 24-hour care, seven days a week. Her parents were at breaking point and wanted to access three hours of daily respite, which they felt would enable them to continue caring for their daughter at home. Mother Riven Vincent speaks with the BBC in this radio interview: David Cameron has let parents of disabled kids down.

Ellen at Love that Max posted yesterday about her experiment to try to get people to stop using the word ‘retard’ on twitter: If you ask people to not use the word retard. She has guts and stamina. Read about it.

Here’s another sobering piece about hate crime against people with disabilities: The Invisible Hate Crime.

And finally, last night I could be heard screaming in front of our new Mac computer. But it was a scream of joy, as I realized I had successfully transferred the vocabulary from Proloquo on Ben’s iPad to his iPod (a first!).

We had been using the wrong instructions before. Armed with the correct instructions and moving step by step, the mission was accomplished.

So now I can modify the vocabulary and keep it updated on both devices.