Sunday, August 9, 2009

Peter and my blog

Years ago in Ann Arbor I rented half of a house with a friend, with grad students living on the other side. Our residences shared a common porch and parking area in the rear, not that I owned a car since I was saving money for law school. I rode a bike to my job at University of Michigan Hospital, where I worked from noon to 8 p.m. as a clerk in the operating rooms and at night as a part time aide for my friend Andy, who was in an iron lung at night due to polio. We would hang out a bit, I'd get her ready and put her into the iron lung and then we'd read or kid around until she fell asleep.

Peter was one of the grad students across the way studying to be a social worker. We tended to keep our doors unlocked since, although the street was fairly busy, no one ever wandered to the rear of the house to enter. The front was locked. Besides, we had little to nothing for anyone to steal - just our beds, dressers, old couches and a kitchen table.

Financially I was in the best position of anyone. My roommate was perpetually unemployed and the grad students never had time to earn enough money and study. They also never had enough food to eat. So I began to fill our refrigerator with snacks and food and it was an unspoken rule that Peter and the other grad students could wander over and eat what they wanted. Peter's favorite was chocolate pudding and I always kept some in supply for him.

When I began to apply to law schools, my life became much busier. I came home one day and Peter was standing, looking forlorn, in front of our refrigerator.

"No chocolate pudding?" he asked. "Again?"

Sometimes I feel this way with my blog. When work and living with a disability - including dealing with finding help and equipment and the resources for it - gets very busy, I don't have as much to offer on here to readers. I just don't have the time or energy to blog. The image of Peter looking for pudding comes to mind and it makes me smile.

But I do have one thing here to share. Australia has released a report called Shut Out, which talks about the results of a nationwide consultation process to find out what living with a disability is like. Below is an excerpt, but the entire article about it is at the link above. Let's just say it offers food for thought.

It is a shocking picture. The report finds that Australians with a disability are often isolated and alone. Their lives are a constant struggle for resources and support. In short, the national notion of the ''fair go'' does not seem to apply to them.

More than 56 per cent of participants said they had experienced difficulties with social inclusion and community participation. More than 39 per cent said human rights and access to justice was a continuing problem. Thirty-four per cent identified problems with employment, while a further 37 per cent raised the issue of the cost of living with a disability.

....

Over and over, participants made the comment that it should not require such an extraordinary effort to live an ordinary life. Sadly, more than half of respondents identified problems with the disability service system. As a result there was considerable support for the introduction of a national disability insurance scheme, which would remove existing inequities and ensure people with a disability were able to access the support and assistance required to participate fully in community life.

However, the report also demonstrates that people with a disability are resilient and strong. They have fought hard to achieve their goals. When they have succeeded it has been despite - rather than because of - the system.


1 comment:

pmatthews said...

Wonderful blog!!

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