Saturday, September 22, 2007

This is best for you

How many times I've heard those patronizing words since I've acquired my disability. In fact, it's so common I've taken to clocking people to see who gets the record.

So far the winner is a secretary at a local DME provider who "decided" which wheelchair was best for me in less than a minute. I suppose she had a chart in front of her which indicated the exact model to "prescribe" for a quadriplegic. When I brought up the issue of what medical folks thought I should have, she promptly replied "Oh no. The model I gave you is the one you need. Let me set up a fitting." Just like that. No wonder people just buy online.

Then there was the nurse who kept insisting I should take a medicine - which I was allergic to. Instead of checking my file, she kept interrupting me and then said "This is best for you. All quadriplegics take it." I shuddered and left the doctor's office without a prescription -or paying for the visit, considering they were apparently treating another quad who didn't have the allergy!

Then there are the hordes of (well meaning) friends and family who tell me what is best for me. "Stop working," they say. "And go on whatever the government gives you. If I were you, I wouldn't work."

To which I reply "Go ahead and stop working if you want. I'm not stopping you."

"But -" here it comes - "this is best for you."

Arggghhhh! Or how about this one? One friend handed me a Silvert's catalogue full of specialized clothing for the elderly and disabled and told me that I was being inconsiderate of those who assisted me if I didn't dress in these sack-like dresses "to make things easier". Oh, please. Why not just drape a plastic lawn bag over me in the morning, shower me in it since it's waterproof and whisk it off at night? That would be easier if we're going to throw all fashion sense out the window. Of course, when I protested, she used the words "This is best for you." And she added "Also for everyone else."

I hate when what's best for me is wedged in there with a guilt trip about it being best for everyone else too. But at least it's more honest. Because about 95% of the time when people tell me something is best for me, the bottom line is it's the easiest way to go about things for other people. What they really should be saying is "This is best for everyone else".

That list could include all kinds of things because, let's face it, having a quad around is work. It could lead to a scene where someone decides it's best for everyone if I "go somewhere where they can take care of me" or best if I "take a little pill so I'm not a burden anymore".

So the next time someone out there wants to label me as difficult, just stop and remember that those five little words are mighty dangerous for a quad who just agrees with them no matter whose mouth they pop out of. I'd like to suggest to people that they be more discerning before using them in situations they know nothing about, especially as concerns my health, life, clothing or decisions I make as an adult.

If they're listening (which I doubt) I really need to say "This is best for you."


Anonymous said...

Well said, Ruth.

Anonymous said...

I'm glad to read your post.

Sometimes people who say that want to save hardship and distress for the other person. Sometimes it's their own ease they're protecting. Either way, they don't know exactly what it means for the other person.

I'm pretty big on giving strong recommendations, with all the evidence I can muster -- and then just letting people make up their minds. If they have evidence that's different, I listen to that, and take it into account.

Every semester, a few folks insist on staying in my statistics course in spite of failing the algebra pretest (which they can retake as much as they like). So far, no one who failed to pass has ever passed the course. I tell them that. But, ultimately, the choice has to be theirs.

Emotionally, it's very hard to get past the point where our strong desire for the well-being of the other person becomes an attempt to think for the other point - and control their choices. But if we can't get past it, we've erased the personhood of the one we're supposedly helping.

Anonymous said...

Sr. Edith, I work with disabled people and am disabled myself and agree with what you say. There are times when I give strong advice but I never make my help conditional on the person taking it. I also try to remember the adage about walking in the other person's shoes since my perspective is limited and I can't really know how he/she feels.

As a disabled person I also know that I've heard these words about things being best for me a lot more than my twin sister did/does (who isn't disabled). These words are tossed around to disabled people far too often in inappropriate ways.

I look forward to the day when I hear these words less often and can enjoy advice given on an adult level- adult to adult- rather than in a patronizing way. I think the message sent here is a beginning.
Now we have to get people to listen.

Connie@[with]tv said...

Oh My. Ruth, I certainly hope they are listening.

Anonymous said...

I agree people want to do things the easiest way when helping. My parents died two years ago. They used to help me now I have caregivers come in who get paid. They rush and don't do things I ask. Sometimes I feel like asking who is working for who. I know if I say anything they get mad at me but it affects my life. But it's good to hear I'm not the only one .How would they like it?