I read a story this morning (link above) about how scientists found the oldest living animal and then killed it. It was a clam that, according to the rings they found after they cut it open, appeared to be over 400 years old, perhaps more.
And this led me to thinking about how overanalyzing the shortage of home health care aides, rather than fixing the problem, is doing the equivalent of cutting open the clam rather than looking at the big picture. The oldest living animal isn't the oldest living animal when it's dead, is it? And providing help to people with disabilities isn't help when it doesn't happen.
This past weekend I fell through the cracks of the system. A back up aide failed to show up although arrangements were made well in advance. This isn't the first time - or the last time - this has happened to me. The shortage of home health care aides doesn't just affect our ability as people with disabilities to get an aide - but the agency's ability to hire and fire and maintain a quality staff.
We can all get into a debate - which is usually the knee jerk reaction when I bring this subject up - about the low wages that aides get. This is undoubtedly true.
But where does that leave those of us who, like it or not, are physically dependent on aides? I want to know when we are going to get to the heart of the matter here. When are we going to stop cutting open the clam to find out how old it is, stop analyzing the situation and come up with solutions?
For a quadriplegic feeding oneself , cutting up food, being able to prepare food, dressing oneself and a myriad of other things people take for granted can be added to the list of things that require assistance. That's not to say in some melodramatic way that my life lacks quality because my physical disability prevents me from doing some of these things easily or at all - but to point out the impact of the lack of services on my quality of life. For those who do not know the level of care required, they may not understand why it's such a big deal if aides don't show up or I don't have help.
And then there is the issue of privilege, which Elizabeth over at Screw Bronze was just blogging on : privilege.
This privilege thing, which by the way various people define differently, is a much bigger part of what blocks progress with issues of access and services than most think. If those with privilege assume they will never need access or services, then "fixing" the problems and addressing them by putting resources toward them isn't a priority.
To the person who is hungry, this issue is important. To those passing by the door of her house on the way to a restaurant, it doesn't exist.
Many who think disability couldn't happen to them find out when it does happen that privileges are not only created by society but sustained by it. I suppose it comes down to being our choice as to how we use those privileges.
3 comments:
First of all I'm sorry you and others have to go through this. I use help but on a more limited basis so if it falls through it's not as big a deal. My family does back up which helps but I know not everybody has that.
I agree we need to work on practical solutions.
As a fellow quadriplegic who requires a great deal of assistance let me say that I completely agree with your blog! And let's not forget the individual responsibility of the backup aid how would he or she like to be stuck in bed dependent on others for assistance.
goldfish- thanks for your comment and support.
greg I appreciate your comment especially since you're also a quad! You bring up a great point about the responsibility of the backup. I think it's important to work on solutions that raise the responsibility levels as well as raises and money earned.
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