Disability issues

I can't seem to stop thinking about the Ashley treatment and why her parents would do what they did. After making my last post, I realized that I may have missed it a bit. I shouldn't be outraged at Ashley's parents' actions (even though I am still processing it). Instead, these actions are a reflection of the society we live in.

There are a few larger issues that I think are well worth a lot of discussion and consciousness raising at the heart of the Ashley debate. First, the rights of people with disabilities. As I can see it, there are two sides to this debate. One saying that because Ashley has the cognitive abilities of an infant, she cannot make decisions about her body and therefore her parents have extra rights over her and that she herself loses rights that typically developing people would or wouldn't have (like who would give a typically developing healthy female and elective hysterectomy?). The other side says that all people, regardless of ability have certain civil rights and dignity which is inherent in being a human being.

I tend to fall in the camp of the second group. I strongly believe that all people, regardless of ability, have a personality, desires, etc. They may be at the pre-intentional level of communication but they are still a person. They still have basic rights. They still should be treated with dignity and respect. People should talk to them as if they understand. Because we don't know. We don't know what they know. We don't know what they understand. We just don't know and don't have a way of knowing at this time. Therefore, wouldn't it be better to error on the side of dignity than to assume they don't understand and to say derogatory things about them? What harm is it to use the term "depends" or "incontinence products" than nappies or diapers? Babies wear diapers or nappies, adults do not. I know this may seem like a small "language" or "PC" thing but language makes a difference.

The second issue is the difficulty of parenting a child with a severe/profound disability. As I have mentioned, supports are available to parents. However, they are often difficult to obtain. Unfortunately, funding for special needs devices is one of the first cuts made in government. The Irish government did not increase special education funding even though this funding is desperately needed and many were surprised by the lack in increased funding. Parents have to wait for a long time to get the devices they need and there are even longer waiting lists for in-home help. However, the government isn't providing additional funding. Even when there is funding, qualified people are often difficult to find.

While in college, I worked as a personal care assistant in clients' homes. I did a similar job while in graduate school. For both jobs, I got paid between 7-8 dollars an hour. For a student, that isn't bad money. If you are trying to do it to make a living and doing it full time, that isn't really a livable wage given that health insurance and taxes come out of that.

I guess the difficulties of parents is part of the larger issue of societal views of people with disabilities. There seems to be this automatic de-valuing of people with disabilities. There also seems to judgements made by appearance. When people see someone in a wheelchair, we make judgements. When we see someone with Down Syndrome, we again make judgements. The problem is that these judgements are often based on ignorance. Ignorance based upon a lack of interaction with people with disabilities. This lack of interaction is in turn caused by a lot of societal factors such as limited accessible spaces and a long history of "locking away" people with disabilities.

Ok, tirade done for now...