Saturday, October 25, 2008

POLL results

A few weeks ago.

It was still warm out and I was sitting in my wheelchair at the side of the road, waiting for Joe to come around with the car. I park just off the sidewalk so I don't block people as they rush past. I was joined by a fellow, who lives in the same building, who uses a walker. He was tired by the time he reached the end of the driveway so he asked permission to join me. He turned the walker around and took a seat. Very clever inventions thoughs walkers.

We, of course, chatted weather. It's a Canadian staple and a way that you establish that you a) can carry on a conversation and b) are not some creep who slides from weather to weird - it's a litmus test for socail skills up here in a country where weather more often than not is WEATHER. We then moved on to the next thing that old guys talk about (I remember when it used to be sex) which is of course, health. He asked me how long in the chair, I asked him how long in the walker.

Slowly he came to tell me that his using the walker was something that he's adapted to readily. He loves the damn thing. It gets him around. He can put his shopping in one part, sit on one part, stand and look the world in the eye with another. But, he told me, that almost all his friends - BD (before disability) friends haves slowly exitted his life. He doesn't understand why because he's the same guy with the same interssts, with the same sense of humour. But that didn't seem to matter. Suddenly the walker because too much to transport, other excuses were found. And now, he's lonely.

A few years ago.

I was in Virginia doing some work there and, as it was a while back, I don't remember how I ended up doing a meeting with mostly parents. I know it wasn't a presentation, it was a meeting. But no matter, not important to the story. I was telling them about a situation where I was in a store shopping for baby clothes and another customer and the clerk were trying to figure out what to buy for a Down Syndrome baby. I helped them out. (the full story is here on the blog some where) I told them that the most important gift, beyond baby clothes and baby toys - was congratulations.

One of the parents in the room got very teary and told me that no only did she not get congratulations, she didn't get the presents of clothing or toys. She got the gift of abscence. Her friends just stopped coming round, stopped phoning and visiting. It was like one day she was 'in' and the next day she was 'out'. She was devastated by their betrayal. Hurt beyond words that, when she needed friends, they simply weren't there.

A few days ago.

I put a poll on the blog about 'community' asking if there was a disability community. One voting option was 'community or not, I find disability an isolating experience'. Almost 20 percent of those who voted, picked this one. Chewing the Fat was established to create a little community - but it is a virtual community. Virtual communities can't bring soup for illness or casseroles for tragedy. Virtual communities can't hug and hold. Virtual communities are wonderful for what they can do but the do not replace the day to day need for friendship and companionship. To sit with someone and laugh until you cry, or cry until you laugh.

I do not understand why the typical community flees from disability. And I know, I know, I know, there are many that don't. But those that don't turn away don't excuse those who do. I've heard stories of isolation so often. Loneliness can be epidemic amongst those with disabilities.

Somehow we need to find ways to make a bridge from the virtual communities we have created into the real worlds that others have created for us. I'm not sure how.

What sayst you all?


datri said...

We live in a small town and I make sure to bring my daughter, who has Down syndrome and autism, EVERYWHERE with me. To the local store, to the playground, to the pancake breakfasts and spaghetti dinners, to every family function at the local elementary school,to my older daughter's fields trips.

If everyone sees her, AND sees that she's not a "burden" but a joy, then they will accept her and our family. So far, we haven't had anything but positive feedback from our local community.

Anonymous said...

I do wish that we weren't so broadly spread about the globe! It's not that there aren't plenty of other people with various disabilities in my community, but that it's difficult for me to get to know people outside of work because I have no time except the wee hours of the day.

By the way, your two posts on the mother of the DS baby are here:
For Unto Us A Child Is Born and

Spring Comes Early. They were such powerful posts, I bookmarked them! (Please note that the pages with the important comments don't automatically load with those hyperlinks.)


Anonymous said...

The eldest of my 4 kids has DS. He is a joy to most- all my current friends let him readily join in , and tell me to let him do things with their kids. When my husband was attacked by 15 youths 3 months ago, these same friends brought dinners, and food for us and the children.

My son is accepted here in South Australia, not so much in Sydney-but here-and all of our friends accept and integrate him (for want of a better word)inot thier words with pleasure-tis nice to not have to fight :)

Anonymous said...

I live in a small town in Texas. There is so little community for us here. I am a lesbian and all my friends are straight which is ok I guess. My daughter is intellectually challenged and she doesn't even know anyone who is "like" her. The friends we do have are from the local Alcoholics Anonymous group. I have been clean and sober for fifteen years and I am so blessed to have these people in my life. They have always been very loving and accepting of Amber and only one person in fifteen years has had a problem with my sexuality. I sometimes wish that we lived in a big city for the communities available for all our different needs but we really love where we live. In many ways we are isolated here. That is one reason that this blog is so important to me. Thanks for being here Dave. I'm sure you and your blog fill an important need for many people.

Anonymous said...

A "Down syndrome baby"????

Aren't we supposed to say, "a baby with Down syndrome"?

People first language, and all that?

When my son was born (yes, he has Down syndrome), some friends stayed, some did not. No matter. I made new ones, in the Down syndrome community -- or is that, community with Down syndrome? :)


Ettina said...

"A "Down syndrome baby"????

Aren't we supposed to say, "a baby with Down syndrome"?

People first language, and all that?"

I honestly don't know. I'd say the best bet is to ask a Down Syndrome person (or person with Down Syndrome) which they prefer.
I do know that insisting on person-first language for every disability is upsetting to some people - autistic people (myself included) and deaf people are two groups who usually prefer 'adjective/noun' usage (eg autistic people/autistics) to person first language.