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Sunday, June 30, 2013

On Being Ground Down

A few days ago I wrote that the cultural construction of disability wears down people with a disability. The institutions we create to solve the socially constructed problem of disability do the heavy lifting. The unstated social goal on the part of the normate is to disempower people with a disability. Total institutions work their  magic on vulnerable populations. Secondary schools, universities, rehab centers, group homes and nursing homes all excel at reminding the public at large we people with a disability are different. We are special. We have special needs.  This line of reasoning results in staggeringly high unemployment rates, social isolation, and stigma. This is not accomplished in a day or two or even over a span of months. To really destroy a person with a disability, to ground them down to subservient silence, takes decades. It is a social assault of  small daily violations that over a lifespan can crush a person. It is an insidious process. I rail against disability based social inequities but am far from immune to the glacially slow and destructive results. I am battle scared and deeply flawed as a result. The worst part is the slights and small degradations become the norm. I accept my inferior place without even knowing I have done it. This thought came to me yesterday in the strangest of places--the bathroom at Citifield where the New York Mets play.

Like most baseball fans, I cannot afford to go to more than one or two games a year. Yesterday was cap day and Syracuse Alumni day at Citifield. I attended the game with my son Tom, his half sister, Steve Kuusisto, his in law's, and Ross Connell. I had an awesome time. Thanks to Steve we attended a Syracuse picnic, held next to the Mets bull pen. I even got to meet Mookie Wilson who is in the Mets hall of fame. He and Dwight Gooden were my favorite players in 1986. As we stuffed ourselves with hot dogs and burgers we got to watch the pitchers warm up. Oh the sound a ball makes when thrown  by a major league pitcher into a catcher's mitt. The popping sound is unique and I instantly felt like I was a boy again, carefree my life ahead of me. Navigating through a baseball stadium in a group is not easy. Add in my wheelchair and Steve's impressive guide dog Nira and we are in Steve's estimation a comedy in motion. Wheelchair man and dog man cover a wide swath of space. Anonimity is not possible--Nira is a rock star. I will hand it to each and every employee we encountered at Citified, they were all great. It may be expensive to get in and park the car but it was an overwhelmingly fun day. Why Steve and I even split a filet mignon sandwich at an insane price of  $15. It was worth every penny.

In the land of disability however life is always shall we say interesting. Around the fourth inning nature called. Nira was content and Steve decided to leave her be. Yesterday was hot and all labs struggle in the heat.  Steve and I head off in search of a bathroom. We enter and as always the single stall I can get into was occupied. Steve waits with me. Time ticks by. Then too much time ticks by. I shrug tell Steve welcome to my world. I tell him go ahead I will catch up with you. This wait for me is the norm. I silently think why are drunks and constipated men magnetically attracted to the single stall I can access. Steve is not amused. Steve is pissed. Steve violently bangs on the stall door. I want to crawl into a hole. Banging on the stall door never works. He does not know men will sit on the crapper to spite the door banger and Steve is one hell of a door banger.  Sure enough the unseen half drunk man taking a shit decides now is great time to have a loud telephone call. Honestly you can not make up such a primal scene of sociology. So we wait some more. We hear the flush, pants getting buckled and the cheap stall door opens. Steve rips the door out of the guys hand and loudly, very loudly, bangs against the door. The half drunk guy is pissed off and gives a surly look our way. Steve is leaning in with good position and is ready to pounce. Steve is not a big man but he is barrel chested and strong as a Finnish oxen. A fight is not just possible but less than a second from taking place. Based on Steve's body position I know he has been in a fight. In less than a second the half drunk comes to the same conclusion and quickly backs down and slinks away.

I have thought a lot about what took place in the bathroom. Why was I not furious?  Why was I not confrontational? Was Steve's anger unjustified?  I was torn. Steve and I had every right to be furious. I should have shared his fury. And then I thought this trip to the bathroom perfectly encapsulated how a person with a disability gets worn down over time. Long ago I too would bang on the door. I would be confrontational. Steve made me realize I have lost something important. Being confrontational can work. In fact I think it has a place within disability rights and disability scholarship. Anger Ed Roberts wrote when directed at injustice however small is good. We need more pissed off cripples. These pissed off people get stuff done. Steve gets stuff done. I will too. 

18 comments:

Melanie Suzanne Gerber said...

Bill ,
Yes.many times the sqweeky wheel does get the oil or in this case....the stall!!
Melanie

Stephen said...

>>I have thought a lot about what took place in the bathroom. Why was I not furious? Why was I not confrontational? Was Steve's anger unjustified? I was torn. Steve and I had every right to be furious. I should have shared his fury.<<

One possible explanation for why your rage needle didn't lurch into the red zone is because a) this has happened to you/me countless times before and will happen countless times in the future, which has resulted in some measure of learned helplessness in these specific situations and b) you realize that getting into a screaming match (or worse, an actual fight) with one lone schmuck would accomplish absolutely nothing of any meaningful value. Plus the behavior of that schmuck that you can't see hidden behind the stall door might not think twice about getting physical. Are you/we prepared for possibly being assaulted?

Real change, however that ultimately comes about, is not going to happen by schooling the public one person at a time.

Also, there's a misconception among more than a few PWD that HC bathroom stalls are created for the exclusive use of people in wheelchairs/scooters. They're not. Unlike using a HC parking space without the proper placard, which can result in a hefty fine if caught, it is not a violation for an AB to be found using a HC bathroom stall. It's inconsiderate but it ain't illegal. There's no full-proof solution that I can think of, but signage posted on the HC stall door requesting that the stall be reserved for those with mobility impairments would be helpful.

A said...

Acquiescing wears you down, and fighting for everything is wearing, too. In a way, I've retired with my daughter as far from the world as I can and don't deal with this kind of thing much right now, but in the bad old days when I fought with the school district, buoyed by a mentor-mother who had turned a neighboring district on its head, things got so intense and harrowing that I came close to a nervous breakdown. None of this is easy, and strategy matters.

John Kelly said...

Great post. We all get beaten down, and the thing is that getting angry and confrontational comes with a high cost of its own. It's much easier to get angry for someone else, and it's great you had an ally there. If you were alone and confrontational, your physical safety might actually be at stake. The nature of oppression is that sometimes you don't have a good option.

Rachel Cohen-Rottenberg said...

Bill, your post really resonates with me.

I have found that I don't confront everything in the way that I used to. When I was younger, I was like a house afire. Any injustice would spark a verbal torrent. But now I'm older, and I don't have that kind of energy to burn. For me, it's not so much about feeling ground down as it is about stepping back and watching what's going on, and knowing that I've seen it a million times, and deciding where and when to engage so that my energy is used to best effect. I can't engage all the time. I can't get angry all the time. My body just can't sustain it. I was born outraged, and only in my 50s am I figuring out how to channel it so that the injustices of the world don't wear me out. I see this as a positive.

Plus, my outrage and my grief about some of the ways of the world go so deep that I sometimes find myself at a loss as to what to say at all. It doesn't seem worthwhile to keep repeating the same things over and over -- especially when they've nearly always been self-evident to me and are so far outside the radar of the average person. I've pulled back quite a lot for that reason as well. I watch the world and I see how self-absorbed so many people are -- how they don't fight for each other, how they don't consider each other, how they wouldn't know what solidarity looked like in a millions years -- and I wonder just what I'm supposed to do about these kinds of interactions. The paradigm by which I understand the world is so different from the one that most people use. Sometimes, I don't know how to bridge that gap. I suppose that's why I write: it gives me time to consider how to frame these things.

Lynn said...
This comment has been removed by the author.
Ruth said...

Bill,

Glad you wrote this. I've waited in the ladies room countless hours - if you add them up - while store employees lounge in the accessible stall, etc etc etc. Once had a Target employee tell me that she didn't have an 'office' to take a break in and the accessible stall was the most comfortable place. Every now and then another woman who is waiting joins in my quest to at least try to get across the message that if you're going to use the accessible stall when you don't really need it, be quick about it considering it's the only one I can get in. As I sit on long lines of women waiting for that one stall, at times with six or seven other stalls available, the sole accessible stall remains unavailable for at times up to a half hour.

But as Stephen points out, it's not illegal. On and on it goes...whilst we can't.

My friends are appalled when this happens if they're with me. But some admit to me that it never occurred to them how much they're infringing on physical spaces created for those needing access. Once aware, most said they stopped doing it. But who knows?

The ultimate answer, it seems to me, is universal design with a lot of these issues. Kind of like grade school - if there's only one crayon that's bigger everyone wants it. They may not need it, but they want it. Parking, bathroom stalls, stadium or movie seating - whatever the 'perk', some AB's feel entitled to it vis a vis people who need the physical access.

And that feeling of entitlement, to me, is what actually needs to be altered more than the size of anything. Practically speaking, however, I'd vote for universal design.

william Peace said...

Stephen, A few things you wrote stopped me dead in my tracks: ""learned helplessness". I wish I could take exception to this observation. For a while I have been feeling a weariness in my bones that goes into the marrow. I chalk it it up to age but there is much more going on in my mind and in American society. I perceive an unarticulated and massive anomosity when it comes to making a reasonable modification. Second, I agree schooling the public one by one is fine for one's daily life but in the bigger picture is doomed to fail. Aside form the fact this individualizes disability, we need to ram our civil rights down people's throats and out their ass. The subtlety of a brick sounds perfect to me.
A. Mentoring is key. I had a life changing exchange with a guy in miid town at the time NYC put lifts on the buses. A bus went by us and he let a string of profanity that made me blush. He looked at me and said "ho the fuck do you think you are going to get to work when you get a job out of college". He wrote down the bus number on a piece of paper and told me to call the MTA. A week later I joined the EPVA bus buddy program. I taught people with a disability how to get on the bus.
John, I find confrontations exhausting. And you and Stephen pointed out the obvious: I really could get hurt at my age now.
Rachel, Glad my words resonated with you. There are may ways to channel anger. I think the days of me physically expressing anger are over. Long ago I got kicked out of Yankee stadium. In fact I was taken out of the stadium in handcuffs (I broke a very expensive network camera). Like Yogi Berra I have vowed to never return.
Lyn, You raise an interesting point. Pain for people with a disability is perceived as inevitable part of disability. It can be but that does not mean pain should not be treated. Study after study demonstrates people with a disability are consistently given inadequate pain relief. As for pain itself, between the age of 9 and 18 I experienced unrelenting and devastating pain. I came ot think of pain as a friend I could be close to. I turned down mind numbing narcotics and relied on my mind to adapt.
Ruth, I think airports are the worst. I have been in many a rest room with 20 open stalls. The I can get in is occupied. The GAP recently started locking the single accessible stall. The manager has the key. The result is a waste of my valuable time. I have no solution. There is not fine as there is for handicapped parking. Being unaware is not an acceptable excuse. We need to teach disability rights from the kindergarten on up.

Ginger Stickney said...

And sadly some of it just simple ignorance, unthoughtfulness, etc. I personally read an excellent piece on why someone in a wheel chair might need that stall NOW, and as a result stopped using them. However, I have noticed that there is a new trend to put baby changing stations in these stalls. WTF? I make a point of complaining every time I encounter this...

But onto your main point...YES. I myself am finding myself getting back in touch with the anger that fueled me when I was younger. I felt I had lost it as I got older more comfortable in life. I overlooked the slights, the subtle comments about my kids' race....and then when I had Jude, I realized I could not be silent any longer. Sometimes it feels like an uphill battle...every day someone uses the R word or some other word insulting to those with IDs...perhaps though if we are all angry we will empower one another as well.

Thank you for your blog by the way. I'm glad I found my way here.

Nessie Siler said...

William,

Please, don't stop. Your words, and your writing are the reason why i think that I can take on the world as it is, and in some small way transform it into the world that it needs to become. Some posts ago, you said that our movement needed more activists/scholars, and you give me courage to become one who will bridge the gap and make the noise in the push for our civil rights. Don't stop!

Nessie :)

imfunnytoo said...

I am very happy to find this piece here...I'm still at a loss as to what to do about my unintentional "getting swallowed up " by the administrata of my impairments or "fading away" that has gone on...but to have others going through similar things...it makes it easier to push against it somehow.

A said...

Yes, a really good mentor is a wonderful gift in any endeavor. And I won, got my daughter everything I asked for, but I think the very aggressive, close-minded and even bullying administration capitulated not because of my own perseverance but because some fearless newcomers,
a couple who were both attorneys and were willing to take out a second mortgage on their house to fund a protracted battle with the district, made my demands look like peanuts by comparison. So the teaching seems to have been that someone has to push for what sounds outrageous.

A said...

Closed-minded, that would be. Though close would do. And the couple that pushed the envelope so hard succeeded, BTW. Basically, they out-lawyered the state's lawyers. I had several interesting conversations with them. Their two sons were severely autistic and both parents, who were extremely bright, had Asperger's traits that served them well for this work. There was not a single undotted i or uncrossed t that could have slipped past their scrutiny. So belligerence isn't really what I'm talking about. I think the bottom line shifts when people are smart about strategizing. The completely unruffled and unshakeable focus of these folks was a marvel to behold.

Middle Child said...

I know how your Steve feels. I felt exactly that way when people would treat Don badly. But Don was pretty good at speaking out for himself and didn't take any shit. A lot of people didn't like him for that but that was their problem. The worst were so called friends who would wait till Don was out of the room and say things like "And how are things going, really" as if I was this stupid brave woman coping it sweet and was really miserable. It was as if I had to defend my appearing happy because I couldn't possibly be happy could I. We were both passionate people and as such there were sparks and fiery "discussions" but this was just being ourselves....most of the time we were so in sync it was as if we really were one person. Not sure if I mentioned this before but Don had daily bouts of Autonomic Dysreflexia and luckily the liquid Adalat worked quickly, but sometimes it would take more and he would thump down too low and pass out. Each day in the last years, was so precious, and because when we woke up and though "we have another day" - and the world looks pretty darn good when that happens. Then after Don's suffering to have people add to this by being rude or cruel, I just felt like smacking them down.
About six months before he was killed,I was horrified when Don told me of his experience on the way from the dentist (only about 2 country town blocks) to the coffee shop. He had been crossing the road...safely...when for some reason known only to the electric
wheelchair it lurched. He over balanced...but still in the chair just leaning over hard over the right armrest he was unable to get himself back upright...this would have been very painful for him as his ribs would have been up against the armrest hard. His forearm was all badly grazed as it
was.
He was in the middle of the road and unable to control the chair. I have never heard him sound so heartbroken as when he told me that there were about 10 cars banked up in front of him and not a one got out of their car to see what was wrong. It would have been totally obvious he was in distress.

Then he began to fall over forwards onto the controls and he knew if that happened he would be out of the chair on the ground.
It took about three minutes for anyone to actually get out of their car and see what was wrong and only happened after one man's girlfriend yelled at him to do so. A long time in that position. This was not out on the highway ; all lonely and scary.; this was in
town; near our little country shopping centre.

Some things would shake my husband... not much after all these years but this really shook him and scared him - that no one would help as if he was less than human or scary somehow.

If it had been an ablebodied in distress in the middle of a road (daylight) people would have run to see what was wrong. Just one instance...hope i haven't covered this before.

B Burton said...

I've been thinking a lot about this. You were at a ball game with people you like, having a great time. It was a fun day...until. Maybe you didn't want a fight to mar a fun day. Maybe you just wanted to remember it as a fun day without having to think about accessibility "issues" and disability politics. As I tell my husband, "You know, some days I just want to go into the store, buy the milk and come home. I don't want a fight."
If I have to get into a fight, I'd sure like to have Steve along with me!

Carwile said...

I love this. I agree with all my heart and mind... but... it also gives the "disabled" community a bad rep. They may not deserve it, but it affects everybody.

As I have grown after my injury, I too feel like the fight is being sucked out of me, but I also don't put my energies to banging on a stall door. Why not go find a manager ( I know, one is no where to be found at Mets stadium.) But shouldn't we try another course than banging on the door, as satisfying as it can be at the time... what is the solution that the Mets mgmt can adopt to make sure the Handi-stalls aren't misused

BTW- I'm assuming your wait was longer than most ?

Lynn said...

Oh, but Carwile... that's how oppression works, isn't it?

If you're inconsiderate, and you grossly inconvenience a White Anglo-Saxon Protestant straight affluent employed able-bodied guy... well, he may or may not get angry and make a scene. But when he's deciding whether or not to do so, you can bet he's not worrying about whether his actions might cause people to think that all White Anglo-Saxon Protestant straight affluent employed able-bodied guys are assholes. He doesn't have to consider whether he's giving "his people" a "bad rep." He's got the privilege of representing only himself.

Carwile said...

Lynn,

Independent of what you think of my background, I have to tolerate the community having a bad reaction to me not knowing me, usually when I first go somewhere. I attribute this to behaviors that the greater community in the US sees of "disabled" people having a great time banging on doors. And I've been there, but there are better ways, like having the appropriate facilities for everyone to use.

I am only asking the question - how can Mets Stadium admin get that done?

And obviously a White Anglo-Saxon Protestant straight affluent employed able-bodied guy doesn't seem to have the luxury of representing only himself. He has your prejudice to content with and your conclusions about White Anglo-Saxon Protestant straight affluent employed able-bodied guys to battle. Don't wallow in however you see the world percieving whatever you consider to be "your group." Be our own person. It is now the world advances itself- each and every time.