the bearer of bad news

Why is it that people with disabilities and their caregivers are not valued in our society? Most people with disabilities are active and productive members of their communities. Most people with disabilities refuse to be categorized by their disability, but it is the only descriptive most of them receive. When I say what I do for a living, I am almost always asked whether my clients are mentally or physically disabled. It is a hard question to answer because every person is different, and I cannot classify everyone as having exact disabilities as everyone else. It is a loaded question and people ask me because they are curious. It has been my experience that an average person on the street equates disability with every disability he has ever heard of. If I answer that I have a wide range of clients I can see confusion reign in that person's eyes. He or she wants to classify what I do in comparison with other jobs with other people with disabilities he or she has heard of. The problem is that it is not that simple.

Just as in the pool of population of those without disabilities, people are individuals. I can say that I have a client who was born with an injury to the spinal cord and so has symptoms of Cerebral Palsy. Ok, but I have three clients who were born with injuries to the spinal cord and have symptoms of Cerebral Palsy. They are so completely different that it is not even fair to compare them, except that they use adaptive equipment within their homes and communities. Ok, but I have four clients that use adaptive equipment within their homes and communities, and only two of the four have Cerebral Palsy. Do you see where I am going with this? The people I work with have jobs and families, are aged 27 - 76 and all ages in between, and they can't be classified into a box that fits into casual conversation!

So, what do we do with these individuals who already make a contribution to their communities via jobs and volunteering, and in one case providing a source of historical knowledge for an entire town by writing a book about it?

The answer has been to defund the programs that help them make their way in the world as productive citizens. As in the cases of a lot of what we consider non-disabled people, they need very little to a lot of help, depending on their system of support. I would not be where I am now, working for a living, supporting myself in an apartment, and helping others in a caregiver role if I did not have the help of my community. No one said to me as I lay in hospital dealing with my own disability, that they were withdrawing support for me because they could not afford it. In my case it was the love of friends and family that got me through and helped me recover from that round. In the case of my clients it is the withdrawal of necessary funds to provide them with caring staff to help them move ahead despite their disability.

I am a taxpayer. I vote for those who would raise my taxes to help fund programs like the one that funds my agency. There are those, however, in my community, who balk at property tax going up a few dollars, and so they decide, with their votes, to leave my clients, my staff, and myself without a way to do what we need to do.

I make very little money, and in fact I make less now than when I began working here four years ago. If I did not have insurance and a flexible schedule I would have had to find other work long ago. This year's budget cut was 4.8%, and at this rate my insurance rates will go up again, and if we have to cut staff again my caseload could increase, or disappear completely if I am the one to be let go. That would cut deeply into my flexible schedule that I need in order to do my job, and in order to accomodate my own illness.

So today I had to tell someone that she has to lose some of the precious help she receives because our agency could not absorb the cost of providing that help to her as she cares for her daughter at home. Some times my job really sucks.