Lesley Davis: Disability awareness Living with a disability means ‘a crazy amount of new stuff to learn’ 

There is a certain shock value when I tell people about my encounter with Guillain-Barre Syndrome eight years ago: “One day I was fine, and the next day I was completely paralyzed.”

GBS is a relatively uncommon, non-inherited, auto-immune syndrome in which one’s body overreacts to a perceived threat, usually a virus.
The results can vary from slight weakness in the extremities to temporary partial or total paralysis.

It is a medical mystery why some people get GBS and others do not.
In very severe cases like mine, recovery is not always complete, resulting in limited mobility. I use a wheelchair most of the time.

I am grateful for the Americans with Disabilities Act, because of which most places in the U.S. are wheelchair-accessible; for Vocational Rehabilitation Services, because of which I was able to afford a wheelchair-accessible van; and for friends, family, colleagues and even total strangers who make my life as rewarding — and sometimes even more rewarding — than it was before I became disabled.

Lesley Davis

Lesley Davis

Here are two of the many things I have learned in my years living with a disability, things I would never have learned otherwise:

1. People stay stupid things.
Many able-bodied people tell me that they could never “do what I do” or “stay so positive” in the face of what they imagine must be a greatly diminished existence. They might even go so far as to say that they don’t know how they could carry on with their lives if they had to be “confined to a wheelchair” like, well, me. In my experience and in the experience of other disabled friends, we don’t want sympathy or, even worse, pity, and we really don’t like to be told we are “confined” to anything.
None of us knows how we will cope with a major life challenge such as a disability until it happens—and it happens to more and more of us as life expectancies increase, as wars wreak havoc on bodies and as medical technology advances.
As of 2011, 36 million Americans (12 percent of the population) had one or more disability. Thirty-seven percent of adults older than 65 have at least one disability.
The odds are excellent that you or someone you love will live with a disability eventually.

I feel sorry for people who are so sure that they couldn’t handle living with a disability, and I’d like to think most of them are wrong about themselves.
In my experience, living with a disability is so much more tolerable when you embrace it rather than lament it or rage against the “unfairness” of life.

2. Adversity invites opportunity.
My disability has led me to see that there is a crazy amount of new stuff to learn, something that’s easily forgotten as we get older.

As a result of spending 10 months in the hospital and in a rehab center, I have learned what it takes to convince an insurance company, Medicare or Social Security to see things my way (and their default positions to the contrary); I have learned a lot about what makes a good doctor (admitting what they don’t know as important as asserting what they do know); and I have learned that those who can’t advocate for themselves or have someone to advocate for them in medical settings are frighteningly disadvantaged.

As a result of spending most of my time in a wheelchair or using a walker, I have learned a lot about engineering and ergonomics. Because of my disability and my interest in mobility devices, I now act as a consultant and product tester for a revolutionary new power wheelchair and for a disability travel initiative.

This summer, I’ll be meeting with the Senate Majority Leader to discuss increasing access to new technologies and mobility devices for physically disabled people.

I get to do these things.

I get to help other people live better, happier, healthier lives.

And I get the best parking.

Posted: Monday, June 16, 2014 4:00 am | Updated: 7:22 am, Mon Jun 16, 2014.
Special to the Herald-Times
This guest column was written by Lesley Davis.

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