Sunday, March 18, 2007


Sitting around chatting.

One of the reasons we work is to meet social need. Yeah, we've got important business to do, but it's nice to sit around and chat. I was chatting with Paula from Hope House as I was waiting to get started with another full and busy day. She was telling me that she had just got back from a conference in Boston and that the conference was fun and full of information. But more than that, Paula's from Boston originally so it was nice for her to just return home.

While there she had the chance to talk to her sister who is the mother of a daughter with Down Syndrome. As Paula is in the 'helping industry' she and her sister have had many a discussion about disability and parenting and adulthood - the whole ball of wax. Her neice is her own guardian and Paula's sister told her that at one point recently she had some questions about benefits but when she phoned to ask those questions they couldn't be answered. Her daughter would have to give permission for the worker to give out any information even to 'mom'. Being her own guardian she was in control of that information.

It took a while for the worker to contact Paula's neice to get consent to discuss benefits with her mother but it was worth the time and energy. Then the worker called 'mom' with a question in her voice. It seemed when talking with 'daughter' the worker had discussed disability and was surprised to be told that her disability was in her legs. The file said differently, the file said "Down Syndrome". 'Mom' was confused at her daughter's response but assured the worker that the disability was indeed "Down Syndrome" as recorded.

After talking to the worker she phoned her daughter and asked about the phone call.

"Did you tell the woman that you had a disability?"

"Yes, I told them about my legs."

"But you don't have anything wrong with your legs."

"Yes I do." Her daughter was adamant.

"What's wrong with your legs." Mom was concerned, was there something she didn't know?

"They are too short they don't touch the floor."

At that point Paula, Joe and I burst out laughing. Yeah it's funny, but yeah it's cool. She didn't see her Down Syndrome as a disability worth mentioning. It wasn't stopping her from doing much. It wasn't stopping her from living life, loving life and enjoying every day.

If only her legs were longer.

There is a deep lesson there, underneath the laughter, about what disability really is.

And what disability really isn't.

Thanks Paula, for letting me tell the story. I hope I did it justice.


Belinda said...

That is a hilarious and wonderful story. Thanks Paula and thanks Dave!

All 4 My Gals said...

LOL, Thanks for sharing that Dave. You made my day!
Nicole ~ Mom to Tarenne who too has T21

Belinda said...

Today I went to St.John's Presbyterian church in Bradford as they'd invited us all to attend their early celebration of Downs Syndrome Day. Joe and Stephanie Vorstermans from L'Arche Daybreak was there too, with one of their core members, Gord Henry, who spoke for a few minutes and who has Downs Syndrome.
Joe said that he likes to refer to the core members at L'Arche as people with "visible" disabilities--and their assistants as people with non visible disabilities. I loved that.

He told a funny story about two people driving somewhere with one of their assistants. One of the guys said to the other that he had Downs Syndrome. His friend said,"I have Downs Syndrome too!" Then they asked the assistant if he had Downs Syndrome.
"No I don't," said the driver.
"Well, that's okay, we'll be your friend anyway," they said.

Anonymous said...

Dear Dave-This is a sad day for me. As a result of your post, I now realize I am disabled.From the one who's legs barely go from my hips to the ground,Frances.P.S.-I heard a good one today;the non-disabled aren't "normal"-they are neurologically typical!

Anonymous said...

You dont know me but I am Paula's other neice (the girl from the stories sister). I also work in the special ed field and just had to say that I think its great that this story is being passed around because it really does show how my sister (and im sure others) are feeling. So thanks! :)

Anonymous said...

After I read this story to my husband he said "that's the knid of family I want us to be."
Anna- mom of Luigia who has DS

Anonymous said...

Hi Dave- I lurk abit and read your blog- I am in Australia and also have a child with Downs Syndrome. Thanks for your insight , and your tears and your laughter. We have come into contact with many people because of his disability and I say it enhances and enriches our lives. Many thanks for sharing your thoughts and life with us-tis a true joy. I hope my Brandon will also one day become his own guardian-and I passed that post along to my Upndowns group ( Yahoo group for families with DS members-dont have to be parents!) . Thanks again. Hope you didnt mind me copying your post- and I put the link to your site too.

Anonymous said...

"normal" is a setting on the dryer. NT is what the medical community uses to describe individuals without a suspected or actual diagnosis.