Sunday, March 1, 2009

Pity or Compassion -- what would you want?

My dear friend, Gary Presley, fellow writer and author of the revealing and thought provoking memoir "Seven Wheelchairs: A Life Beyond Polio" wrote an important opinion piece for his home town paper. The link takes you to the comments. To read the opinion piece, click on the title "Lewis Trades on Pity."

Gary's an old hand at a life lived with a disability --he's spent the last 50 years in a wheelchair. Some of the people commenting on his opinion piece attacked him for not appreciating Jerry Lewis; for not looking past a man's career as a non-profit spokesman which made those he 'helped' the object of pity. Perhaps pity and compassion are synonyms, but there is a world of difference when the two words come to life.

My husband, new to the wheelchair crowd, has experienced both pity and compassion and we both prefer compassion. Actually what we both prefer is to see people look him in the eye and see the man, not the wheelchair or the disability.

For him, the wheelchair has become a kind of validation -- 'yes, I truly am disabled.' Until then people would judge his uneven gate, his slow progress, his use of motorized vehicles, even his slurred speech and make comments intended for him to hear. Comments like 'if he would go on a diet, he could probably walk.' Or 'drinking before noon -- look at him stagger. How disgusting.' Or 'those carts shouldn't be allowed here, they ruin our enjoyment.'

Of course now with the wheelchair we deal with people who treat him as if he were invisible, speaking to me as if he weren't there. Restaurants either don't have easy access or they hide him in the back where patrons won't see him. Other than Olive Garden -- they see the man, talk to him, smile into his eyes and treat him as a respected customer. Parking places that accomodate a side lift are harder to find than you think. Able bodied people who park in handicapped parking places -- there should be a special place in purgatory for you....

My husband has broad shoulders and lets it all just roll right off of them. I want to spit and hit and make stupid or judgmental people understand just how wrong and disgusting they are.

He knows that his present condition is much preferable to what is to come: degeneration, helplessness and death.

He has an inherited form of Amyotrophic Lateral Sclerosis -- ALS -- Lou Gehrig's Disease. A death sentence that usually comes within 3-6 years of diagnosis. Thankfully he has a slow progressing form of the disease.

No cure, no treatment, no remission, and no explanation. Ninety percent of people who get this disease have no clue as to why. Our military, particularly those who served in the Middle East have a much higher rate of ALS among their ranks. Now a cluster of ALS diagnosis among people associated with NASA and Patrick's Air Force base are showing up. Research is going strong and getting closer and just recently discovered a new gene associated with the inherited form of ALS that will make research even easier. But still my husband's brother is dead -- died at the age of 18 from this rare disease. His aunt, great aunt and more than a dozen cousins -- all dead of ALS. So we would like to see a cure or treatment before our children must face this disease.

Gary on the other hand is in the wheelchair for the long haul. And he knows the problems of life before the Americans with Disabilities Act and those that face him each day. He has no choice but to use the wheelchair and unless he wanted to live his life on welfare or worse, he needed to get out and work. But simple things like getting into buildings, using public bathrooms, opening and closing doors, being treated like a human being all became major hurdles.

One of his jeerers suggested that he just stay home if he didn't want to be pitied. Gary's response to such comments is usually a shrug of the shoulders and resolve to just live his life because staying home and waiting to die is no alternative. But when a major spokesman for a non profit organization encourages pity in order to get money -- it seems like he is giving with one hand and taking away with the other. Everyone has the right to live their life with dignity.

Thankfully the ALS Association -- at least our experience with the Florida Chapter -- is all about respect and finding a cure. We are all in the battle together. Most of the leadership have lost someone to the disease and know the struggle that the victims of ALS --the patient and the family and caretakers -- are in for. It is a mean disease that eats away the muscles, leaves a person weak and helpless all the while they watch the progress and have no tools to stop it.

In the end all we have left is our love and dignity and no amount of money raised is going to replace those valuable commodities.

Do we appreciate help with the overwhelming costs of maintaining quality of life for my husband? You bet ya! But should assistance be given at the cost of my husband's self-respect? NO!

A power wheelchair costs more than $20,000; a simple walker $300; a van with a lift more than $65,000, renovation of the bathroom another $30,000. A lift to help get him from bed to chair $5000. It isn't a cheap lifestyle although the majority of people with disabilities live on low incomes and without help can't afford to renovate their environment to accommodate their basic daily needs.

If you see a man in a wheelchair it could be Gary or my husband -- please look him in the eye and smile. See the person not the disability or the equipment. Treat him as you want to be treated and don't judge. Please reserve your judgment for referee's calls in football games.

Know that one man is a gifted writer and the other devoted much of his life to helping kids, playing and refereeing sports, and working as an accountant paying thousands of people accurately each week. Both men spend their lives working despite the road blocks thrown in their paths. They pay taxes. They vote. They love. They have favorite sports teams and adore their kids.

They are just like you and if that scares you -- it shouldn't. It should give you hope that if it were you in that chair, you would be no different than these courageous men who struggle over things you take for granted. And yet they smile and enjoy life and take on the ignorance and try to provide knowledge and wisdom about life with disabilities.

My husband can get in and out of buildings. Can use public restrooms, and lead a fairly normal life in a wheelchair because Gary and people like him stepped up and said, "Americans with Disabilities" deserve equal opportunity. Because Gary lives his life with responsibility and respect, my husband can as well.

I have to add that Jerry Lewis lives his life with his own disabilities -- so maybe he is to be pitied.... But I think maybe he would not appreciate that.


Jean Marie Ward said...

Okay, I give up. I keep trying to send a donation to Team Goldsmith, but the ALS web site has me in an endless loop of registration and "Make a General Donation". :-P Are you still at the addy you used for CB? I think it would be simpler if I just sent a check.
I'm so sorry Derrol needs the wheelchair now. I know it's validation--I used to see the same attitudes directed at Teri, though for different health reasons. But you always hope the symptoms won't get that bad.
Much love to you both.

Gary said...

Thanks for reading the op/ed and understanding the motivation. Were it a longer piece, I think I would have said Lewis missed a chance to become a true American hero by not signing onto the disability activist movement in the 60s and 70s. If he had listened and learned when first approached, he could have advanced the movement tremendously. Maybe the ADA would have been passed decades earlier.

It is never good to believe in the rightness of everything we do, to believe our egocentricities reflect reality.

Thanks for the praise.


Dawn said...

Well, you deserve praise and more, but I just wrote the truth. If you hadn't fought for your own rights, our life would be much more difficult.


Bob Sanchez said...

Dawn, you write such thoughtful posts. My best wishes to you and Derrol. My friend Gary wrote a fine op ed, and I'm at a loss to understand why anyone wouldn't agree with him.


karenfae said...

I know exactly what you mean about handicapped accessibility. My family has dealt with it for over 30 years, my younger brother was in a car accident over 30 years ago and was a quadriplegic for more than half his life - talk about handicap parking spaces and seeing people park a car and run to the store I take down license plate number and turn them in. Six months after my brother died my great niece was in a car accident and because a paraplegic. Now the family is going through it all over again and she is only 20 years old. My elderly mother in a wheelchair due to severe RA and osteoarthritis. Some families get hit with it all it seems - my heart is with your family and hope for a cure - we may be fighting for cures to different things but our family is praying with you.