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?