Like many others, I struggle during the holiday season. Holiday cheer often creates a time of great stress, family strife, financial stress, and depression. I think I have experienced much of this in last week or so. I have also been happy. My son is home and Sunday we went to the American Museum of Natural History and Zabars. We enjoyed a West Side day in the city and it was amazingly warm. Nearly 70f. It was great to see lots of families and children of all ages stare in wonder at the impressive museum collections. It was not an easy day for me. My wheelchair is akin to a portable social isolation unit. I cannot simply enter an elevator like others. On a busy day I wait with others who do there very best to distance themselves from me. I heard dozens of parents tell their children "Watch out for the wheelchair". I saw other parents yank their kid's hand hand firmly and pull them away from me. I was stared at often. I was avoided by most. This bothers me. Bad lessons were taught by good parents. I felt great stigma.
As I drank my tea this morning I was very tired. My son and I had a late into the night chat about life. It was truly wonderful but I was slow to get moving in the morning. Then I read Stephen Kuusisto's latest post at Planet of the Blind and knew I was not alone. Link: http://www.planet-of-the-blind.com/2013/12/look-theyre-staring-at-me.html I was struck by the following: "I'm just a blind guy. I walk with a guide dog. I don't represent anything. I don't portend God's unhappiness. I don't need you to prat for me. I don't require a donation. I don't want you to run in front of me and open the door". For people with a disability we always seem to represent something we are not. Anonymity is impossible. Routine is never routine. Social exchanges are awkward at best. Physical access is never simple. Stares common place. It is hard to feel normal if not impossible. The ordinary is impossible. We people with a disabled body represent something we are not for others who know nothing about disability or my life in particular. The psychic drain this causes is a heavy burden to bear. It is in fact relentlessly depressing. It wears on you in an evolutionary way. It is easy to be ground down. It is easy to to let millions of small psychic cuts and wounds destroy your life. It is easy to remain shut in to your home and away from others. It is easy to cope in self destructive ways. There are many easy ways to be defeated by the bipedal hordes that think they know all about my life when in reality they know nothing. Like Kuusisto, I represent nothing. I am simply a human being. Nothing more, nothing less. And yet when I was driving home with my son I felt less than human and this is not an easy reality to fight.
7 comments:
Hey Bill - don't let them win!
A couple of days ago I was shopping with my daughter-in-law. She was busy packing up the groceries while I was putting them on the belt. I turned around to say something to her and when I turned back a woman was putting my stuff up on the belt for me. I asked her to please stop and she gave me the funniest look! I just said - you need to ask before you make assumptions - then she said in a very sarcastic tone - well Sorry! This really bothers me - I hate it when strangers touch my groceries - for one thing, I have no idea where your hands have been and secondly - who says I want you to do that? More and more I have this happening where people just assume and don't ask - they are not getting better, they're getting much worse! I asked Krystin - do I really look so old that people treat me like I'm useless?
Anyway buddy - have a Merry Christmas - enjoy your time with the boy and don't let those able bods win! DAMMIT! LOL
I have had this happen. Stunning ignorance and rude. Would they do this to a person who did not use a wheelchair? Not a chance. The assumption is you a r not competent. To me this is a power play, a demonstration of bipedal superiority.
How I love my son! He graduates in May and I know we will not see each other often afterwards. I have spawned a wandering soul who is going to seek out adventure.
" I have spawned a wandering soul who is going to seek out adventure."
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Ditto with my daughter. We have enjoyed a gap semester with her this Fall but this is likely the last time that we will ever be living together under the same roof.
Wonderful and sad at the same time.
"Would they do this to a person who did not use a wheelchair?"
Er, no offense, but yes. I have, and do. There are any number of reasons why it might just be a nice thing to do: the person has a LOT of groceries and the belt's moving fast, the person has a small kid, the angle is awkward for the person to easily reach the bottom of the basket, the person is also trying to explain something to the cashier, the person just looks tired, etc. If such a person happened to be making use of a wheelchair or scooter, I would not fail to help because of that. Most folks smile and say "Thanks." Once in a while, somebody says, "Oh, I've got it," and I nod and desist.
Not trying to pick an argument--just sayin'.
I have to agree with SCA, sometimes people just want to be nice, it's not always about the wheelchair or the disability. When it is about the disability, take a different viewpoint and realize those people are just not 'aware' or 'awake' in life. If they stare why not take the opportunity to say hello to them and see where it goes? You never know when it's a teaching moment for you and a learning opportunity for them, if you walk/roll away with an attitude what did that accomplish besides pissing you off and affirming to that person that you are the one with the issue? Living as a cripple is hard, no able bodied person can understand it until they live it, it sucks, but it is life and it can be good. And before you think I'm just another one of those able bodied people who doesn't get it, I have been in a chair for the past 25 years, raised three kids single-handedly, completed college and have a full time job in IT. Living life with a disability is ALL about YOUR attitude, you should try making a new year's resolution, just sayin. My unsolicited two cents, rage on as you please :)
Ronn, Yes, happy and sad. Bittersweet. Unlike many others, I was very happy to see my son head off to college. I am not so happy now as he approaches graduation and his own life. I know we will rarely see other. Treasuring every moment with him now.
SCA, I have never seen a person help another shopper empty their cart. I would consider such "help" rude and inappropriate. The point you are missing is many actions that appear at first glance to helpful are in fact not. When disability is involved many offers to help are in fact a symbolic way of asserting dominance. No matter how politely I refuse "help" the push back can be extreme. I have been cursed at for example when I politely refuse assistance getting my wheelchair in and out of the car.
Anonymous, I have been paralyzed for over 35 years. There are times I am not in the mood to educate people. Days I just want to be typical. Living as a cripple is hard but not for the reasons you imply. What "sucks" is the skewed social interactions and assumptions made about my life by others who know nothing about disability or my life. I am taken back you could write life with a disability is all about a disabled persons attitude. Attitude is not relevant at all. What makes life "suck" as you put it is the civil rights violations I experience on a regular basis. What "sucks" is so piety at larger refusal to negotiate difference. What "sucks" is the social stigma associated with disability. None of these issues has anything to do with my attitude. It is a disregard for the value of my life and existence.
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