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.