July 11, 2008

Disability Hierarchies

Sean, at transabled.org, gives a really good description of disability hierarchy. I am reprinting it here:  

What do I mean by "hierarchy"? Simple, there seems to be a belief that some types of disabilities are better than others. Quads are better than paras, paras are better than amputees, etc. It seems at times that only certain disabilities are "acceptable". Wheelchair users are at the top (and that fact is pretty obvious with the International Symbol of Access (ISA), a stylised wheelchair user...

Then there are folks with vision impairments, who have set themselves in a class apart, and who, in the United States anyway, have managed to get consistantly higher disability benefits through advocacy. My hat is off to them, whatever they can get is good.

But it does not help with presenting a united front with people who have other disabilities. And then, there are those with cognitive impairments. Often relegated at the bottom of the totem pole. Too many people in the Independent Living (IL) movement aren’t able (or willing?) to cater to that group’s needs (although to be fair, I hear the situation is improving).  There is a feeling that these folks are not worthy of the respect of the disability community. In fact, the disability community as a whole behaves towards people with mental
 illnesses somewhat like society at large behaves towards the disability community.

It is my experience that Sean is absolutely correct. As a person with E., I can say that I have visited many disability sites only to find that epilepsy is not listed among any of the disabilties they address. Can there be anything more totally debilitating than epilepsy?

The results of a recent survey conducted by Disaboom should be enlightening. The survey found that 52 percent of Americans would rather die than live with a severe disability. Disaboom, an online community for people with disabilities, says it announced the shocking results in an effort to educate people about why this viewpoint is so tragic. But, like so many disability websites, Disaboom does not list epilepsy among the disabilities or conditions it addresses. This is suggestive of an interesting conclusion: both the greater share of Americans and Disaboom are engaged in ableist thinking when it comes to dealing with or lending a hand to persons with epilepsy. 

Remember the ADA?  The civil rights legislation designed to afford the disabled full protections as citizens? Well, a creator of that legislation was himself a person with epilepsy--- Tony Coelho. He was a person who, without regard to hierarchy, saw 
a need for all of us to receive protection as Americans. 

The ways in which folks categorize epilepsy are fascinating. In the first place, to class epilepsy as a mental disorder or disease is dead wrong. Neither is it a stand-alone cognitive impairment. There was a time when these classifications could be supported by the medical establishment, but today, such classifications are obsolete. Though epilepsy resides in the brain, it is not a mental disorder. Though it can affect cognition, it is not a cognitive impairment. Epilepsy is a disorder of the brain, and is the most common one in the world. 

Epilepsy is a general term used for a group of disorders that cause disturbances in electrical signaling in the brain. Like an office building or a computer, the brain is a highly complex electrical system, powered by roughly 80 pulses of energy per second. These pulses move back and forth between nerve cells to produce thoughts, feelings, and memories. When those impulses move  more rapidly-as many as 500 per second for a short time-due to an electrical abnormality in the brain, an epileptic seizure occurs. This brief electrical surge can happen in just a small area of the brain, or it can affect the whole brain. Depending on the part of the brain that is affected, the surge of electrical energy can cause: 

Changes in a person's sensations or state of consciousness. 

Uncontrolled movements of certain parts of the body or of the whole body. 

Epilepsy is also known as a seizure disorder because the tendency is to have recurrent seizures. Epileptic seizures vary in severity and frequency, and even in the time of day they occur.  

Okay, so that's the basics of what epilepsy is. Now it's up to you to learn the details of an epileptic's experiences in living. Instead of telling us that you don't want us, or that you don't consider us disabled, open up, include us and learn something new... 

We're all waiting!

1 comment:

angryyoungwoman said...

Thank You! This is so important! I've noticed so many times that epilepsy isn't included in disability sites/blogs. I've even had my family (including a sister who is also brain-damaged) tell me I'm not disabled. At my worst I have several seizures a week--how is that not disabled? They don't get how it's offensive.