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Ouch weblog: individual blog entry

6 Sep 07, 2:34 AM - In The Company Of Others

Posted by Mark

One of the noteworthy aspects of living in Minnesota--aside from the blizzards and the hot dish and the abundance of blonde people--is the fact that it's one of the few states in our imperfect union that offers 24-hour nursing care to those of us with an affinity for breathing with a ventilator. Now, just because the state offers nursing care doesn't mean it's easy to find actual nurses. As in much of the country, we have a nursing shortage in these parts and home care isn't the first choice for most people entering the field. When I first moved here and used a home care agency, I was constantly dealing with gaps in the schedule and some nurses who were--how to say this nicely--less than ideal matches. A few years ago, I decided to manage my nursing care without an agency and things have settled down a good deal. My nurses get a better wage and I get a little more freedom to determine who is going to work with me.

I sometimes get asked what it's like to have someone around me 24/7. I usually respond that it's probably a little bit like being married to seven or eight different people. When you're with someone for eight or more hours at a stretch, you can't help but learn quite a bit about that person. And in turn, they are privy to many of the details of both my professional and personal lives. They know my family, friends, and colleagues. They know it's useless to talk to me when I'm in front of the computer. They know about my cravings for Pringles crisps and my liberal politics. Some of my nurses probably know me better than most of my relatives. I do manage to carve out a private life, but it takes work and some acquired assertiveness. And we Midwesterners are not renowned for our assertiveness.

I've also learned to play to the strengths of each of my nurses. I have one nurse that I take with me when I need to go shopping for clothes. When I need help with fixing my computer, I have a couple other nurses to whom I turn. I figure that my experience with managing my own care is good preparation for a career in middle management.

It probably seems weird to most people; having someone within earshot nearly every minute of the day. But without my nurses, I'd probably be much less independent. That may seem counterintuitive, but not from where I'm sitting.

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At 06:36 AM on 06 Sep 2007, Andrea wrote:

"But without my nurses, I'd probably be much less independent. That may seem counterintuitive, but not from where I'm sitting."

Makes sense to ME. And I don't use nurses or other home care services. But then, as a deaf person, I use sign language interpreters and telephone relay services. Some people view that as being "dependent" also, but it gives me a great deal more freedom than doing without--because if I tried to "do without" then I would simply become dependent on friends and family. Which would mean I would have to cater to THEIR schedule and THEIR willingness to help, which would really constrain when and where I could communicate, or whether I could communicate at all. Dealing with people who are PAID to help me when I need it, AS I need it, puts ME in control--in control of my schedule, in control of my interactions with other people, in control of what information I convey to them, and in control of what information I solicit from them in turn. And THAT'S why an interpreter or a relay service gives me independence.

I can see where nurses in your case would be roughly equivalent.

I think people who labor under the myth that paid assistance somehow implies *more* dependence are not comparing that situation against what the lack of ALL assistance would mean for us. Nor are they comparing it against the severe limitations of relying entirely on the good will of friends and family. They're probably comparing it against what having no assistance means for THEM, as people who don't NEED assistance. And that simply isn't a valid contrast. The tools, resources, and skills that non-disabled people need to be "independent" simply aren't the same set of tools, resources, and skills that disabled people need.

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