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Wednesday, December 30, 2015

Routine Social Degradation

I often joke that having a disability is the perfect cure for a big ego. When my head gets too swelled and I think I am hot stuff a stranger will ask me a stunningly stupid question or make a degrading comment. As most wheelchair users will test, social interaction is rarely routine. My social life is wildly unpredictable. When I go out my front door I have no idea if my experience will be routine, positive, negative, strange or flat out weird. There is one constant: the majority of people I interact with during routine social interaction assume I am inferior socially and physically. When I ask a person to move my request results in no movement. I am often told "go around me", "wait until I am done", or am simply looked at with scorn. Navigating the built environment is never easy  and ignorance abounds. In addition, society creates problems that need not exist.

Toy store aisles post Thanksgiving are jammed with displays and surplus stock making it impossible navigate the aisles for wheelchair users. The assumption is no parent with a disability exists.

At my local library the garden club decorates the entrance every Fall. When I inform a library staffer that the button to the electric door is now blocked and impossible to reach the reply is "Oh, the garden club worked so hard and it looks lovely. Why don't you call or knock before you arrive". When I note I can no longer independently enter the building thereby defeating the purpose of the doors I get a stony silence or angry look.

At the national chain drug store, the check out lowered counter space designed so a person using a wheelchair can easily place items down is stuffed with merchandise. This is rampant. Every place I shop the supposedly accessible counter space is used for merchandise. When I point this out I am met with rolling eyes, shrugs, and silence. If I ask for the accessible counter space to be cleared I am instantly a difficult customer that creates needless work.

At the big supermarkets and drug stores I often observe an area where a person can check their blood pressure. This area has a chair bolted to the ground and a prefabricated structure that requires a person to sit and put their arm through a rigid tube with a built in cuff. It is impossible for me to check my blood pressure. I have told more than a few pharmacists about this and asked how can I check my blood pressure. The stock answer is "go to your doctor and have him check it" or "I can't help you".

Elevators often double as storage rooms. Elevators are often locked. No person has a key.

Accessible dressing rooms in the Gap and many other stores are locked.

Van accessible parking spots blue lined area where a wheelchair lift can be deployed are routinely cluttered with empty shopping carts thereby making the spots useless.

At the local minor league baseball stadium a new party zone behind right field was created. To enter this area one must exit the building and walk around the stadium to access the ramp.

When a bus driver at a given stop tells me the wheelchair lift is broken my reply is "The law mandates a bus with a broken lift cannot be put in service". The average bus driver will either give me the finger, curse at me, or most likely say "Get the next bus".

More than one cab driver has told me he will charge extra for taking the wheels off my chair and putting the frame and wheels in the trunk.

Many public schools in suburbia have no wheelchair lifts on school buses they own or lease. It is not uncommon for school districts to suggest the student that uses a wheelchair take a cab to and from school.

Polling places are often grossly inaccessible. Accessible voting machines are uncommon. Polling place workers are ignorant. More than one volunteer has suggested they enter booth with me and they can pull the handle.

I could go on with dozens of other examples. I often wonder why people are so willing to violate the rights of people with a disability. I wonder why are people so resistant to thinking out of the box. Why do people think of all the things I cannot do rather than what I can do. Where do people learn that disability based bias is perfectly okay. As I wondered about this I read a post by Stephen Kuusisto entitled "Playing Chicken, Driving a Motor Bike Pretending to See". Link: Kuusisto reminded me ableism is learned from a very young age. Our public and private secondary schools do a fabulous job teaching children that people with a disability are different. They are a drain on limited budgets. They require special services. They are needy. They are shunted off to special resource rooms. They are sent home by cab or on a special short bus. Children are smart. Children are taught disability based segregation is the norm. Worse, kids with a  disability make an easy target. This is what Kuusisto and I experienced. Kuusisto recalled:

  • Sighted children shared nothing.
  • No one played fair.
  • Hitting people was easy and the blind kid was a perfect target.
  • Hiding things from the blind child was sport.
  • Disarranging the blind kid’s possessions was also rather fun.
  • See above.
  • Sorry is absurd.
  • Steal soap from the blind kid.
  • Push him in the toilet whenever you have a chance.
  • Always take the blind kid’s lunch.

  • My experiences were a bit different. I was nick-named "Old Ironsides". My peers thought this was funny.

    Kids thought it was hysterical to crawl under or over the lone accessible bathroom stall walls and lock it from the inside. Kids thought it was funny when I urinated on myself.

    In college one semester the only accessible toilet in my dorm had no door but a curtain. The curtain was routinely ripped out and thrown away. I had to urinate and deficate with no privacy.

    After getting numerous flats in my wheelchair tires I asked teachers to stop using thumb tacks and use staples instead. Teachers refused my request. My peers thought me getting a flat was very funny and started putting thumb tacks all over school. At one point I was getting a flat daily.

    Yes, this was long ago. The skeptic could argue this is a thing of the past. The ADA I am often told "solved all the access problem you might come across". Sorry but no, the ADA set the minimum accommodations required by law. More to the point, social barriers remain the norm. I recall my son was humiliated at a Boy Scout event by his peers who openly discussed my sexual capacities and the boys speculated on who his real father was. The assumption was I was asexual. This was hysterical funny to all the boys except my son.

    To be blunt there is just no incentive to value the inclusion of people with a disability. Instead we fetishize disability. I am not referring to the sexual fetishes associated with disability but rather "inspiration porn" and sappy media portrayals of over coming any given disability. The assumption here is that disability is a tragedy. Based on 38 years of wheelchair use I cannot help but conclude non disabled people have no interest in disability. I find this remarkable. Disability is after all the only minority group one can join by mere bad luck or accident. One would think disability rights would important given this fact. Yet in the digital age society seems to be content with disability based click bait like theMighty. From its inception, the Mighty has pumped out a lot of content by parents of children with a disability. S.E. Smith recently wrote that the Mighty is a "place where parents refer to themselves by their children's diagnoses, as though they have become entry subsumed  by their children's disabilities, another way to signal that  they're utterly burdened. (Autism Mom, Kidney Mom etc) Its a place of shocking disregard for disabled peopled,  unsurprisingly, includes rather a lot of actively disabilist content. Link: Within the disability rights community the Mighty is seen as a sewer spewing out inherently destructive and degrading essays that reinforce age old stereotypes associated with disability. It is in short ableism run amuck.  So much for our supposed allies. I wish had more answers than questions. I wish I could stop reading stories of abuse and abandonment. I wish our society was more accessible 25 years post ADA. So as I look out my window in near darkness nearly four decades since I was paralyzed I am strategizing how can people with disparate disabilities band together to form an effective political coalition. Suggestions are welcome.