On paper I’m allotted a certain number of hours a week for help from a personal assistant through a program. These hours are used for certain tasks that I’m not able to do because I’m a quadriplegic. Unfortunately, the list of tasks is so long and varied and the pay so low (between 8 and 9 dollars an hour depending on whether the person works on the weekend) that it’s never finished. This leaves my personal assistant in the position of doing what she calls “triage” – like the boy with his finger in the dyke just trying to keep everything from flooding and going under.
This means that I have to figure out ways to get things done on the list that are left over- as well as things that come up that (God forbid!) are not on the list. That often requires that I pay people since my family isn’t available to help. Since I have to budget how much money I can spend to do this, it basically means that I am behind in getting my needs cared for.
So when something happens like a snow storm, I’m really in deep. Literally. That’s when it becomes obvious that there’s a real “snow job” at work here. Think about it. The money I earn goes toward help. My aide does “triage” so I don’t get to pick what I want done.
And I’m still buried under. The frustration from living like this week after week and month after month is not something I can explain. It wears. I triage too. I get my work done, make sure I’m fed and watered.
But everything else is optional. That means my quality of life is seriously affected. If I get an invitation, for example, to go somewhere or travel, I have to consider in the cost of paying someone for the work involved with that. Sometimes I am invited places and the person makes it clear the invitation is conditional on my bringing a personal assistant since I can’t cut up my own food, for example. Since I can’t afford to pay someone to sit next to me just to cut up my dinner, I generally decline.
Quality of life issues do not fall into the same category as basic sustenance. So it’s harder to argue that those of us living in the community should receive assistance with them. But I often wonder how realistic it is to expect people with disabilities to fully participate in society if quality of life issues are not recognized as part of that participation.
Perhaps I should feel guilty expecting to have a full and productive life like everyone else. But I don’t. I’m frustrated by a social services system and a society that sets such a low expectation level of services for those of us with disabilities and then , on top of that, sells us this snow job that it is up to us to fund the difference in finding help.
Unless you are extremely wealthy, paying for these services on an individual basis isn’t practical. The truth is that, whether there’s snow on the ground or not, I’m surrounded by it every day of the year.
Copyright 2007 Ruth Harrigan