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Saturday, January 9, 2016

Cripple Radar and Ableism

Ableism is a relatively unknown word outside the disability  rights community. I have tried to the use the word with people unfamiliar with disability. I am frequently stopped and asked what does ableism mean. I give a brief two minute explanation. The reaction is often swift and nasty. I have had people turn on their heels and walk away from me in obvious disgust after explaining what ableism is. I had a friend who listened to what ableism is and said "bull shit". This man never spoke to me again. On the opposite side of the equation, I have had many students think in a new way after discussing the ableism. A small number of friends understand ableism and revise their understanding of what disability entails. What I often wonder about is the polarizing reaction. Why are some people hostile to the word while others are receptive. Virtually no one falls into the mid range. This is important to me and all those, disabled or not, who support disability rights. What I wonder has been instilled in people's minds? I suspect at issue is the many lessons learned about disability that are picked up at a young age. A few examples should suffice:

The mother who pulls their kid's hand in the supermarket and says "watch out for that wheelchair".

The secondary school that transports every child with a disability via one short bus.

Handicapped seating that is substandard and located in one less than ideal place.

The restaurant cripple table. One table is always used to seat a person using a wheelchair. If occupied I am forced to wait despite the fact other tables are available.

Locked accessible changing rooms in clothing stores.

Anything and everything associated with being deemed "special".

 Paratransit systems that invariably provide inferior and unreliable service.

Side, rear, or locked entrances to buildings.

Inaccessible poling stations and voting machines.

The lessons absorbed are clear: segregation of people with a disability is the norm in terms of transportation and housing. We people with a disability are feared. We people with a disability take up too much space. We are in the way of bipedal people. We are different and a person such as myself is wheelchair bound or confined to a wheelchair. For some, this is where the thought process begins and ends. People with a disability are a nuisance and an expensive nuisance. I have been to way too many meetings when the first line item cut from a budget are access issues. Believe me, I get it. I have no place in the built environment constructed for bipedal people. This exclusion plays out in a myriad of different ways. Enter the wolf in sheep clothing. Imagine the overly friendly man or woman who wants to hold a door, help you with your wheelchair, or assist you in some way. The fact no assistance is needed is instantly dismissed. Everyone is kind to the handicapped and I am thereby placed into the ghetto of vulnerable people.  Vulnerable people are not respected. I am on the same playing field as all others whose bodies are somehow different and perceived to be dysfunctional. This brings me back to ableism and a short article I read entitled "Ableist Hostility Disguised as Friendliness". Link: http://realsocialskills.org/post/136885378817/ableist-hostility-disguised-as-friendliness It is rare I see the issue of ableism addressed in a succinct manner bipedal people will not reject. The first paragraph:

Some people relate to people with disabilities in a dangerous and confusing way. They see themselves as helpers, and at first they seem to really like the person. Then the helper suddenly become aggressively hostile, and angry about the disabled person’s limitations or personality (even though they have not changed in any significant way since they started spending time together). Often, this is because the helper expected their wonderful attention to erase all of the person’s limitations, and they get angry when it doesn’t.

Obviously ableism firmly rests on ignorance and the charity model of disability. As described above we people with a  disability have a passive role to play. It is assumed our lives are severely compromised and our quality of life is substandard. To save us and make our day nicer we are expected to be contrite and meek. We are in essence Tiny Tim as described by Charle Dickens. What we have here is a clash of two classes. The bipedal offer of help is based on the assumption they are superior and wealthier beings. We cripples must bow our heads and say "God bless, every one!". When this does not happen bipedal people get angry.

The article concludes:

Sometimes ableist hostility doesn’t look like hostility at first. Sometimes people who are unable or unwilling to respect disabled people seem friendly at first. They try to look past disability, and they interact with an imaginary nondisabled person instead of the real disabled person. They’re kind to the person they’re imagining, even though they find the real person completely unacceptable. Eventually they notice the real person and become openly hostile. The disabled person’s behavior has not changed; the ableist’s perception of it has. 

This is the world people with a disability must navigate. In response, I have cripple radar. I can spot an ableist a mile away. They are ever so eager to help. They ooze the milk of human kindness. Often they are deeply religious. Many want to cure me. Some want to pray for my rotten soul. Others are overly interested in how I was crippled. Some will make a show of getting on one knee so we can have a conversation eye to eye. Ableist are so eager to help me I can see them sprint across a field and become bitterly upset I got my wheelchair together before they could help me. Ableists love humor. I am often asked "how fast can that wheelchair go" or "have the cops ever given you a speeding ticket". 

Avoiding ableists is impossible. Certain environments I avoid at all costs. Any church  regardless of denomination is teeming with ableists. Here little old men and ladies insist on praying for me. Health food stores are equally dangerous. Ableists are desperate to tell how I can be cured. They have a special vitamin routine that cured them and surely if I was open minded enough I too could be cured. Health care facilities are often physically inaccessible. Health care workers can be ableist as well by asking rude and intrusive questions that have absolutely nothing to do with the treatment being delivered. I really do not think a dentist has a need to know why and how I was paralyzed almost four decades ago. 

Raising my son we shared a look when we encountered ableists. We shared a dead pan facial expression, shifted our eyes toward but not directly on the ableist. We would then as discretely avoid the ableist in question. Inadvertently we would enter into an ableist conversation  and make up any excuse to rapidly exit before the verbal assault could be launched.  The consequences of ableism run deep. There are days that I just cannot muster up the necessary psychic energy to go out the door. Of course, this is unhealthy and counter productive. I do my best but sometimes I fail. For example, I no longer take my bike out and ride on the many bike trails near me. In August I went out on an early morning bike ride to avoid the heat. I encountered a man biking in the opposite direction who upon looking at me turned his bike around and tried to stop me. He yelled at me "I have questions about your bike". This went on for about 8 miles before I became so frustrated I stopped. It was quite clear this ableist had no reason to ask me about my bike. He was asking out ofidle curiosity. My time to this ableist had no value. I was public property akin to a freak. I still ride my bike daily. I do this in my home in splendid isolation. Every day I bike I think of this ableist and think its not easy being green to coin the term by Kermit the frog, my favorite protagonist created by Jim Henson. I will bike  on trails again of course. I will never bow to the oppression that surrounds me and other people with a disability. 

8 comments:

Ben Cerwinske said...

William
I'm aide in a Special Ed. room. I can relate to that feeling of hostility building up in response to a disabled person not "getting better". I would point out that some of that pressure isn't self-imposed. I had girl who used a wheelchair and was non-verbal. She would oftea n bite her hand long and hard. I could sometimes put her hand back down, but she would immediately bite again and again. Other times she would strongly resist this intervention as well. It was draining trying to get her to stop, but if I did nothing she'd hurt herself.

As a caregiver, walking away in order to calm down isn't always a viable option. When I'm not acting as a caregiver, but as a friend, I tend not to experience those types of situations.

Moose said...

Places that claim to be wheelchair accessible but have one single step going up to the front door, with no other entrance.

Stores that put crap blocking the aisles - I love the Kroger I go to but they keep putting crap in the bakery section so that I have to go halfway around the aisles to get to the Coffeebucks for a caffeine fix.

Hotels and apartments that think that putting grab bars in a bathtub makes a room/apartment "accessible."

Oh, the list.

Today I went grocery shopping. As I was putting the bags in the back of my van, some lady came over and asked if I needed help, which was nice of her. I said no thanks, I was fine. She insisted. "Are you sure? I'm right here!" she said in a wheedling voice. I wanted to say, "FFS, lady, don't talk to me like you talk to a toddler who wants to go potty all by himself."

Maybe I shoulda.

h smith said...

I was nodding so much at this post, I've had this "friendly relating to me as an imaginary non disabled person and then suddenly turning hostile when my disabilitys push through that illusion" so, so often with support people, and it took me so long to work out what was going on. Shame that realisation didnt come with the power to stop it happening.

Ben Cerwinski.. do you not see that what you've described is ableism in your work role? If youre working with a non verbal person whos biting their own hand and resisting your attempts to stop them then you are actually assaulting their body by forcing them to stop. You're treating them as if you, the able bodied aide, knows better than them whats "good for them", and as if they need your able bodied protection from themself, which is stealing their autonomy.

Maybe the girl was in physical pain and was using the sensory input of biting to manage it. Maybe biting was her non verbal way of screaming at all the ableist abuse she had to put up with, or her equivalent of pacing up and down, going for a run or having a cigarette and whisky. Maybe it comforted her, maybe it was a way of exerting control and affecting the ableists around her, there are as many maybes as you have reasons for the things you do and the point is you didnt know her reasons, or apparently consider she had any... You just exerted your caregiver power over her disabled body and assumed you were in the right. Which is ableism at its finest. Understanding this truth greatly lessens the caregiver frustration you mention..

Ben Cerwinske said...

H. Smith:

How was it ableism? If another child tried hurting themselves I'd be responsible for stopping them too. If she bites her hand so hard it bleeds, it could become infected. We tried putting material on her hand that she could bite, but she was strong enough to bite through it. We knew it was a sensory issue, but we couldn't let her hurt herself either.

h smith said...

Ben

This is just an attempted explanation, not an attack. It can be hard to judge that from just words on a screen so I wanted to make it clear.

You didnt describe a situation where you were simply stopping a child, any child, from hurting themself. You described a repetitive, draining, battle of wills with a non verbal, physically disabled girl (child?), which unsurprisingly left you feeling frustrated and with growing hostility because she wasnt "getting better". Better, in this context, meaning "more like an able bodied person who doesnt disturb us by biting her own hand"..

And this - "we knew it was a sensory issue, but we couldn't let her hurt herself either."- is you (collective you) deciding that you can't let her do something, which in reality carries minor and manageable risk, that she felt strongly enough about to continue doing in spite of your interventions. Its ableism because assumptions and judgements were made by able boded people about a disabled person that resulted in her autonomy being taken away and her resistance being seen as a negative not a positive thing.

But what if "getting better" for that girl meant growing stronger in and as herself and having more success with influencing her world and exerting autonomy over her body? What if her persistence in the face of the dedicated attempts to prevent her biting herself was seen as worthy of respect rather than as a challenge and frustration? What if the goal wasn't to stop her from biting herself but instead was to first find out if she was trying to communicate something beyond "leave me alone I want/need to do this" and if there was a response she wanted/needed, and then to act on that information and direction from her? Wouldnt that hugely reduce the frustration and hostility on both sides?

The ableist mindset actually makes your life more difficult and unpleasant as well as ours. But its rarely questioned because ableism is brainwashed into us from birth and seen as both the norm and the only way it can be. We need that to change.

Ben Cerwinske said...

H. Smith:

"This is just an attempted explanation, not an attack". I accept that. Please trust that I come with the same good will.

Your response generated a lot of thoughts and questions which I won't be able to put down in a single post so I'll just start somewhere.

The point of my original post was to demonstrate that what might very well have been ableism didn't originate with me. I was given instructions by someone with more authority and knowledge than myself. That special education teacher might have received their instructions from the parent for all I know. The parent might not have liked their child coming home with dangerous bite marks. They were a poor family can hardly afford the medical bills they have let alone another one.

As an aide I can question certain practices, but generally I'm not in position to refuse instructions. If I do, I could lose my job. Then the child might get stuck with someone who doesn't even question things.

People who are disabled often get put into two different groups. Either you're inspirational or a problem. I often feel similarly as support staff. Either I'm a "special" person to do this job, or I'm incompetent. I get this vibe even from reading disability blogs by parents or disabled people themselves. There tends not to be a middle ground for those of us who are trying to our best as the situation dictates.

Thank you for giving me your perspective.

Ben

Southern Wind said...

I think part of the ableism (spellcheck doesn't agree it's a word) is the fact that "fitness" is the American ideal. Most American's have an extremely idealized body type in their heads that they will never measure up to; but, you know, at least they're further along than the "cripple". It's nasty, sub-conscious (most of the time), and ever present. I actually don't mind the little old ladies nearly as much as I understand that most of them are undergoing changes in their bodies for the first time whereas I have lived with these limitations all of my life. They are just noticing how far the "handicapped" spaces are from the entrance and I'm sure it must come as a shock. However, I cannot stand the interaction with people in my peer group or slightly older who falsely believe they are being "nice" by acknowledging that I exist.
S.

Jeffrey Kraus-Yao said...

Is it ableist to believe that those with disabilities should be treated the same as those without?

Thus there should not be public support just for the disabled? That barriers to the disabled are their problem to overcome and not others who are not affected by these barriers?

If a building has stairs you can't get up that is a problem for the disabled to overcome and not a problem for the owner of the building. The owner could install a ramp if they think the added business that might result is greater than the cost.

Since lifts on buses add to their cost then the cost to those who need to use the lift should be higher. But the fares for the disabled are lower than regular which is unfair and discriminatory.