Thursday, March 3, 2011

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.


Once again you have given me food for thought. Thank you for this....

great post, as usual.

I'm a little panicked about options for Sophie when she's done with school. I'm a little panicked, frankly about how ineffectual/stagnant her life at school is presently. I'm also burnt out and need some inspiration. Sigh. Why can't we all live in the same area and have our own school?

oh jeez I had to stop reading the Love that Max post before it got to me
Here is my 0.02, a bit of light from a jaded cynic.
I know that I am lucky and I live a sheltered existence but when I catch a student using that word and give a raised eyebrow, they correct themselves and I haven't had to utter a word. I have a former student, now a medical students, who have volunteered with autistic children at the Geneva Centre.I have calmly told people who use the 'r' word ' you can't say that anymore' and they stop.
and I will quietly continue, just like Max's mom, knowing that we can't change everyone, but also that we can make a difference.

Thank you everyone!

Elizabeth -- yes, how wonderful it would be if we were all in the same location and could band together!

Lisa, thanks for the words of inspiration.


I originally wasn't going to comment on this post, as the issue of segregrating people with disabilities is still painful for me. Truth be told, I'm not even sure that I like or agree with the term of "People with disabilities." Why can I not be simply seen for what I am, "A person. This is why parents, children, and families struggle or suffer so much. Needless to say, "The segregation of any person, disabled or otherwise, is neither equal, humane or kind."

I thank you for your friendship, as BLOOM has always been much more than a place to write or a way to lend a helping hand. For, it is my second home and forever a part of me.