After speaking with several disabled friends about this issue, I’ve decided to blog about it. It’s rather unspoken that when you have a disability that requires personal care you lose some degree of privacy – because obviously that’s part of the deal. Arranging a schedule with another person to come over to help you out means being flexible and having to “work around” these times. And we all get into a flow with our personal assistants/aides that works for us hopefully.
But what’s interesting – and what I’d like to address in this post – is that the people I talked to reported a loss of privacy that went beyond this. It extended to some of their friends – who just drop by without calling or checking first. It can happen in the middle of a workday, at dinner time, etc. Their reason? “Oh, this was a good time for me to come over. I wasn’t busy.” Well, uh, perhaps we are.
Now, let me make this clear. These aren’t people who are volunteers and scheduled to come over, nor are they folks who are helping out and it’s a better time for them.They’re not my aide or personal care assistant, a doctor,a nurse, wheelchair repair guy, an OT, or even the delivery person bringing groceries. I fit all that into my work schedule. I understand that I have to work around all that as well and somehow meet my deadlines. These are people who just want to “chat”. And I have nothing against that – but , uh, after reading that list perhaps you can understand that working around the current visitors I have is daunting already. Having folks stop in just to chat is, to say the least, not going to work.
I rarely had this happen when I wasn’t disabled but, like the disabled friends I spoke to, I find now that people seem to have an expectation that it’s not only okay to stop by to chat without calling or checking first, but they get bent out of shape if I say I’m busy. I don’t understand why they get their backs up if I have to say to them “Gee, I’m in the middle of working on a project that’s due tomorrow morning. Let’s plan this visit for another time” which I think is a fairly mild and reasonable response.
And my disabled friends told me they have the same thing – doesn’t matter where they work from – office or home, either. (Because I thought perhaps that was a variable.). But – all of them also have a level of disability that requires they have aides and I’m wondering – do people think because we’re “that disabled” that we couldn’t possibly be doing something with our time?
I don’t get it.
Copyright 2007 Ruth Harrigan