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Wednesday, December 9, 2015

The Season of Good Cheer?

I dread December, the happiest time of the year. Like many people at the end of the year, I become reflective. I think long and hard on what I have and have not accomplished. On New Year's day I take pen to paper and write down goals for the year. Always too ambitious, I rarely reach my goals. Beyond a general malaise, as a paralyzed man, I have added reasons for dreading December. The aura of good cheer  and help is forced upon me by strangers. Do gooders abound and the sense of charity is palpable. Everybody wants to help me. Some want to make a show of helping me.

Year after year December is a social battle field. I do my best to avoid any social interaction remotely associated with Christmas or New Years Eve. I would not consider entering a mall and when forced to shop I do so at odd hours. Simply put, I cannot be out in public without random strangers who will force "help" upon me. I cannot get in and out of my car without multiple people requesting to help me. Yesterday I was asked if I need help not once, nor twice, nor three times but rather four times. For me, this is the season of imposed "help" that is not needed or desired. I am not perceived as an ordinary middle aged guy. I am the symbolic representation of disability. I am the blue wheelchair logo--static or active. I am a classic representation of misfortune. I am the charity model of disability. Good cheer is forced down my throat by others.

The older I get the more self protective I become when December inevitably rolls around. The reality is one's life and the so called holiday season are often at odds with each other. Enforced good cheer hides much social angst. The imposition of help is in my estimation, a kind of internal cleansing for others.  I am being used and am an ideal target of opportunity. Many assumptions are made and all of them are wrong. My life must be hard. My life sucks because I use a wheelchair. Wheelchairs are bad. I am suffering. I am in pain. I am sick. I am likely unemployed. My social status is lower. All this goes unsaid. The negativity associated with wheelchair use is a given. It is absorbed just as water and food are absorbed by the body. Unconsciously we Americans learn disability in the broadest sense of the word is bad. Disability is feared. In a split second a bipedal person could be paralyzed. We are the only minority group one can be forced to join.

My town of Cazenovia is a no go zone all of December. Doing anything in town is fraught with confrontation. Enforced help is taken to an extreme. Earlier this week a mundane errand list piled up all of which had to be done locally.

Post Office: I get out of my car. I turn down two offers of help. As I try to enter the post office a man stands in the door frame holding the door open. I cannot get by. As meekly as possible I state he is not being helpful. His face flushes read with anger and he curses under his breathe.

Drug Store: I get my prescription and a few other things. As I head to the register a customer, not an employee, is making a show of clearing off the lower counter top that was, as usual covered with things for sale. I place my things on the counter and I am asked in a snotty tone "don't you have something to say?" In a neutral tone I replied "No Ma'am". She replies "You people are always so bitter Why I am nice to you people is beyond me."

Liquor store: As I look for a bottle of rum the man at the counter starts telling me offensive jokes. He asks me to slow down in that thing (my wheelchair). He asks how fast can I go. He asks do the cops pull me over. I remain stone silent. He also insisted on helping me with the door. It is clear he cannot understand why I refuse his help and offer to carry the one bottle of wine I bought to my car. He is clearly annoyed with me. I share his annoyance.

Supermarket: I enter, grab basket and am in the produce area. The manager comes over to me with an employee in tow. She tells me "I have assigned this employee to carry your basket and help you shop."  I did not make such a request for help. The manager simply assumed I needed "help". When I declined she shook her head and the employee in tow said "I told you he was one of the bitter handicapped people who insist on doing everything by themselves".

Laundromat: The laundromat is the most socially dangerous place I regularly go to. Getting in and out the laundromat has lead to some remarkably nasty exchanges over the last year. This week it was weird. After I got my laundry together I turned and saw four people were holding the outer and inner doors to enter. I am sure these do gooders were ever so pleased with each. I was appalled. Was this their intent? No. Did they embarrass me, yes.  And what could I do but mumble a thank you. Had I not done so I am sure I would have been yelled at.

People, typical bipeds, want to make a show of helping the handicapped in December. The other eleven months of the year they are quite content to disparage people with a disability. I would like to know why no one in my town cares that the stores on the main drag are needlessly inaccessible. The library makes a great show of access but scratch the surface and access is more show than reality. Subway has fought to remain inaccessible for a decade. Last year a settlement was reached with the Department of Justice. Subway agreed to make the store and bathroom accessible. Subway had 180 days to comply. Well over a year later Subway has done nothing.

Please spare me the micro aggressions in the form of help. If I need help I ask for it. Adaptive sports taught me this. To be more active sometimes I need help. But help in every day life? No thanks.  I mastered my activities of every day life long ago. I just want to be equal, to share the same rights as the bipeds that surround me. I am weary of being hurt and discriminated against. Oh yes the Garden club does a great job decorating in the fall outside the library. The wonderful decorations obstruct the entrance and I cannot enter independently without being able to press the power door open button. I objected but the decorations and work of the garden club are more important and valued than my civil rights. The town also has a great tree lighting ceremony in December. I don't go as no consideration is given to access. How, I wonder, can people be so oblivious on the one hand and yet on the other desire to help me. The dichotomy makes no sense unless help at its core is about the person offering help rather than receive said help. Think about that one please.


ecodrew said...

Long time reader and fan, first time poster... I don't get people. I offer help whenever someone looks like they could use it (regardless of age, gender, physical ability, etc) - carrying something big/awkward, pushing a stroller/cart, loading something in a car, etc... But, if the reply is "no, thanks I got it", I give an acknowledging nod and move on.

Is it cool to make a quick offer of help? As long as if the answer is no, I move on quickly/politely? We bipeds have a lot to learn, as I quickly understood when my son brought us into the world of disability rights.

william Peace said...

ecodrew, Yes, a quick offer of help is always appreciated. By quick the offer is help is made in a routine way. For example, a student is walking by my car as I am about to get in. He continues walking in stride and asks if I need help. I reply no thanks. Exchange ends. Contrast this with the student who stops as he sees me about to get in. He puts down his bag, bends over invading my space and tells me "I am going to help". Huge difference here. I agree you bipeds have much to learn. The biggest lesson bipeds are resistant to is the most simple: bipedal locomotion is not the best means of navigating the world. Wheelchair use is empowering and different. Comparing bipedal movement with wheelchair use is inherently unfair. Bipedalism is revered while wheelchair use is thought to be bad. Good luck with your son. My "baby" is 23 years old and as loved today as he was on the day he was born.

Melanie Suzanne Gerber said...

Bill, my friend,
Yes, the "Fascade" of help is especially apparent during the Christmas season. And don't get me started about how big business sometimes uses their charitable efforts mainly for public relations. Keep up the good work you do spreading awareness.
Best, Melanie

Unknown said...

I would love to see more on this topic. I have a son with a c4c5 brake and would love to see how others overcome the struggles of daily life! Some people can be so mean, with out knowing. A big issue with us is people will talk to the care givers and not my son. He broke his neck not his mind. He finds it very hurtful. the looks and the whispers. so much I ould really like to follow this and see how others handle things.

Unknown said...

This. This so very very hard.

The temporarily abled come running up to me and violently jerk the Rollator out of my hands as I am negotiating a broken sidewalk that I have navigated hundreds of times before. When I object as I make the not-always-successful effort to not fall, I invariably get shouted at. "YOU NEEDED HELP!!!"

Yeah. Sure do. Fix the sidewalk.

I could give hundrrds of examples without even stopping to think.