Tuesday, May 27, 2008

Disability: Denial and control issues

As the mother of an adult child who spent almost his entire childhood in special education (see here), I've seen it, and, I'm sorry to say, been guilty of it myself: Denial. How else can I explain why it wasn't until six months after our child was diagnosed as hard of hearing that he got his first pair of hearing aids? True, he made it pretty tough for the audiologist, not being much inclined to sit still at the time, but I think it also may have taken me a month or two to get used to the idea that my kid had a permanent disability.

How many kids (now adults) did I know whose parents simply refused to acknowledge that their child had a problem and needed help, or who didn't get them enough help, or who first put them in special ed. when it was too late to do much good? I haven't forgotten the time I attended a meeting in the home of a sweet little boy of about six years old whose parents thought his pronunciation was cute--I practically begged them to get his hearing checked.

But I think there may be another issue involved, in addition to denial, especially with regard to adults. What independent adult wants to admit that his/her body and/or health is not totally within her/his control?

I'm not only the mother of a hard-of-hearing adult, I'm also, at 59, one of the youngest members of my synagogue. How many of our members aren't using hearing aids even though they might benefit from them?

You can't pretend you're not blind. You can't pretend that you can get out of your wheelchair and walk. But you can pretend that you're not hard of hearing. You can pretend that other people are just whispering all the time, or that the volume on the TV is never turned up loud enough for a person with normal hearing to hear it. And/or you can avoid the whole issue by becoming a recluse, leaving your home as rarely as possible so that you can avoid interacting with people and being forced to admit that you can't hear them and need hearing aids. Nobody but you can make you "stick it in your ear," to quote the button that my son's first audiologist loved to wear.

Sadly, the same denial and/or wish to maintain control can apply to persons with certain types of mental illnesses--sometimes, one of the symptoms of certain mental illnesses is precisely an inability to acknowledge that one is ill. (Paranoia has been known to do that.)

The same may apply to certain diseases and other illnesses. Thus far, I've been spared.

This is probably one for the shrinks and social workers of the blogosphere: Is there anything that family and friends can do to help encourage people who need help to get help?


Blogger Jack Steiner said...

I know more than a few people who continue to pretend that they are turning up the TV to ear shattering levels by mistake.

Wed May 28, 11:36:00 AM 2008  
Blogger Shira Salamone said...

Glasses are no big deal; canes, crutches, walkers and wheelchairs are acceptable, but heaven forbid you should suggest that someone needs a hearing aid. Unfortunately, the bias against hearing loss seems to go along with a stigma against aging. And I have have no patience with either prejudice.

Wed May 28, 01:58:00 PM 2008  
Blogger mother in israel said...

I know of people who refused to learn to use a white cane, because of the stigma. The one I'm thinking of wasn't totally blind, but close enough. It made him dependent on others for lots of simple daily tasks.

Fri May 30, 12:13:00 AM 2008  
Blogger Shira Salamone said...

I can't understand this attitude. Why do some people consider disability an embarrassment?

Fri May 30, 10:46:00 AM 2008  
Blogger minister of enlightenment said...

lost of people with visual impairments (i call myself blind, although I can see, but barely) try to pass as sighted, sometimes all the time, sometimes occasionally. there's sometimes a great deal of personal shame associated with blindness, for instance, people will put off using a cane for as long as possible, because it labels them and they are treated worse than when they pass.

Sat Jun 07, 11:54:00 AM 2008  
Blogger Shira Salamone said...

Then it's also the attitudes of those not (yet) disabled that need to change.

Wed Jun 11, 08:03:00 AM 2008  

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