February 20, 2006
Project Cleigh: Dare To Resist!
(thanks to Jazzed for the title)
 CafePress/Advocado is now open -- we've got Project Cleigh gear and other stuff. We're still fiddling with it, and the designs might change as we work the bugs out, but come on over and get some stuff! |
Ettina tells a story in the comments section of the first Project Cleigh article -- in which her school dismissed her criticism of a teacher's question (and its presuppositions) by blaming it on her autism and then insisting that she change her autistic thought patterns -- and then asked, "Is that the kind of thing you want to know about, or is it too minor?"
Dee answers quickly: "Ettina, nothing is too minor. It's the small things that hurt our souls. The big ones just make us mad."
Too small? Not small at all.
"I spent several decades of my life walking with the use of braces," Sharon says. "I hated every step of it. I now use a power wheelchair and I love it! I honestly never wish I was still walking. But there is one thing that I do miss now that I use a wheelchair and that is the loss of anonymity in public spaces. These years I feel as though I am treated like public property when I leave my home. It's not just the intrusive questions, the feigned familiarity of strangers, it's also the invasion of my personal body space. The patting of my shoulder, the grabbing onto my wheelchair when strangers erroneously decide I am in some kind of danger or need assistance steering, the leaning on my wheelchair by strangers, et cetera. It is the repetitiveness and accumulation of all of those reactions that serve to separate and dehumanize people with disabilities in public places."
The feedback Project Cleigh is getting tells me that Mary Johnson was right: this is something that needs people working on it.
Considered one by one in isolation, the little acts of degradation seem very small indeed. Nondisabled people, when they get called on what they're doing, see them as isolated incidents, as unintentional (and I'll grant that a lot of the time, they are unthinking rather than deliberate), as insignificant, and therefore as unimportant. They wonder why we get so upset over something so little.
"I do have a story of my own to tell," says Jessica Moore. "Not any one incident specifically, more like a broad range of things. I've had people cut in front of my chair, ignore me and/or get miffed when I say 'Excuse me, can I get through?' When they comply, I thank them. That really gets the weird looks. I've also had the lovely instance of the classic 'What are you doing out of the house?' look combined with the 'What? You have someone special in your life? How is this possible?' reaction. I squeeze my love's hand, look the stranger dead in the eye, and smile. I even greet them now and again. Other times I use humor and sarcasm to deflect the situation. Either way, I'm finding my place, bit by bit."
For those of us who encounter these incidents over and over and over, they aren't isolated. They're a pattern. They're a pattern perpetuated (often unthinkingly, but unthinking does not necessarily mean okay) by people who see the little reminders that we are not as good as regular folks as entirely normal. Entirely natural. Entirely justified. And they're a pattern that has a tremendous effect on our lives.
Like members of other groups who face regular reminders that they have their places and should stay in them, our attempts to convey to other people what the problem is seem to them like weird acts of discrimination against them, because we are trying to deny them their right to degrade us over and over again. "I didn't mean it that way," they say, or "You have to understand."
One of the ways we can inform people is by telling our stories.
- Swan
I recall a conversation I had with Carol Cleigh years ago about people who are "homebound." Being "homebound," Carol told me, isn't necessarily about being unable to leave one's home. Many people stay at home not because they can't get up and out, but because they just don't want to go out and face the way the world grinds them down.
Shortly after that conversation, I became one of those people who just don't want to go out and face the way the world grinds them down.
It's spirit-killing, and not all of us are as strong as Cleigh or as Jessica Moore.
"I don't want to sound over-dramatic," says SAM, "but given the relationship between repetitive acts of public derision [and] abuse of people with disabilities and chronic depression, [Project Cleigh] in the long run may save not only this crip's life, but the lives and spirits of many other's in our community as well."
There is reason for hope, reports Cleigh. "Most of the 'in-your-face' stuff was done while I lived in Evanston Illinois, a suburb of Chicago, and it did have an effect. That is, after a while, fewer and fewer people would come up to me and interrupt or find it necessary to comment upon or ask about my disability. This became a zone of somewhat increased 'safety,' where I didn't have to deal with so much nonsense because less occurred."
Let's hope that with more people demanding that the little acts stop and with more people supporting those who do, we manage to make zones of increased safety for all our people.
Thank you, everyone who has participated already and everyone who will participate later this year.
I don't have time for this. (You, on the other hand....)
Emily Alexander called the hospital to find out how her mother, who was in the intensive care unit, was doing. Because the ICU nursing station isn't equipped with a TTY, Alexander used a relay service with an operator who read her messages aloud to the hearies on the other end of the line and typed their messages back to her. On the hearie end, it was exactly like talking to anyone else on the phone, just a little bit slower, except that the ICU staff were supposed to say "Go ahead" (GA) when they were done talking and then wait until Alexander says "GA" back before they started talking again.
The first time the hospital operator put the call through, whoever answered the phone said she didn't think the phone was set up to take a Relay call and, while Alexander was explaining why she called, transferred the call back to the operator.
The second time, whoever answered interrupted the Relay operator to say "I don't have time for this. I'm going to transfer you to the operator. Please hold," and hung up.
Alexander's next move -- and she's lucky she tried to find out how her mother was during regular business hours -- was to call the hospital ombudsman for help.
The Relay Call |
"I don't have time for this." How often are we told that it takes too much time to deal with us, that it takes too much money to deal with us, that it takes too much effort to deal with us?
How often are we only asking that barriers be removed when they shouldn't have been erected in the first place? It's faster to have a TTY-to-TTY call than a Relay call, but it's the hospital that didn't bother to invest in time-saving technology and guaranteed that Alexander's calls would be longer than necessary.
Then again, how often are we expected to stop what we're doing and spend our time and effort (and occasionally money) to "educate" intrusive strangers?
When you figure out how often an individual nondisabled person is likely to be expected to stop and deal with an "extra time" request from disabled people, and compare it to the frequency with which nondisabled people have the same expectation of us, nondisabled people's indignation starts to look pretty overblown.
I am frequently stopped by people who want to know what breed my puppy Nate is. ( Australian cattle dog. ) If I don't respond to the first question (often because I'm trying to get Nate back under control after they've done something inappropriate, but also often because I simply don't register or understand the question), they frequently keep asking it over and over, louder and louder.
When I pull my hand out of my glove and fingerspell A-C-D, though, most of them will let their faces go slack, say, "Oh," and turn their backs on me.
Most of the rest will be offended that I have the nerve to expect them to try to understand "sign language." And a fair number of the ones who don't do either of those things simply turn away from me and go back to grabbing at Nate.
On occasion, someone will indicate that they don't understand and will cooperate while I try different approaches to communicate with them. One guy, one time, went and hunted down paper and pen and asked me whether I could write the name of the breed down. He got to pet Nate all he wanted: only a very few people without significant communication-related impairments will really put much effort into conveying information to me or understanding whatever I'm trying to tell them, and in a world where accessible conversations are rare, I'm almost as thrilled to encounter those people as Nate is to encounter peanut butter.
Inaccessibility = Inequality.
-- Kevin Gadsey
We do it to one another, too. Ricky Buchanan reports that she cannot get out of bed, even to use a wheelchair, and that she faces significant difficulties in "trying to get services at home (ever met a specialist doctor who does house calls?), and trying to arrange for products to be delivered at a reasonable time [and] price.
"I have overwhelmingly found," she continues, "that people, even people with a disability, do not take into account the existence of those who can't leave the house." The solution people keep coming up with is for Buchanan's friends and relatives to take the time to make the barriers Buchanan faces in accessing goods and services irrelevant ... to the people who erect and maintain the barriers. "Apparently the idea that my friends and family might have their own lives and not be willing to be couriers at my beck and call (true, in my case) -- let alone that I may want to do something independently or without their knowledge -- seems unthinkable."
After reading that last sentence, I ask Buchanan how old she is. If she were, say, an exceptionally well-educated kindergartener then we might all agree that doing things without other people's assistance and knowledge wouldn't necessarily be appropriate. If she were an entrepreneurial teenager, then it might be more of a borderline case.
But Buchanan is nearly 31 at the time that she responds to the Project Cleigh call. Nondisabled people in their 30s take independence from their families and the privacy not to tell everyone their business for granted; many disabled people who are actually allowed to vote are still not allowed to vote in secret , and some disabled people are still expected to accept surveillance as a cost of participation.
Never heard that one before.
Some of the questions and comments Sharon reports getting when she goes out in public are:
- How fast does your wheelchair go?
- Wanna race?
- Slow down!
- How much does your wheelchair cost?
- I'm gonna have to get me one of those!
- Does that thing run on electric? How often do you have to plug it in?
- How much does your wheelchair weigh?
- My relative is having trouble getting around. Where can we get one of those?
- My relative can't walk well and [the questioner describes the relative's symptoms]. What do you think about that? Does it sound familiar?
- [When there are other power wheelchair users with her] Are you on an outing? Nice day for an outing!
I'm sure that a lot of the people who say these things to us don't realize how un-original they are. (But ignorant, like unthinking, does not necessarily mean okay.) At least some others, though, know full well and don't care. A supervisor at a job I had once asked me whether I'd arrange to have a disabled friend come and undress in the back room so that she could see how my friend's body worked. My supervisor assured me that this was not prurient interest, just for her own "disability awareness." She had never met anyone with a body like my friend before.
I replied that my friend had met a whole lot of people with a sense of entitlement like my supervisor's before, and that I would not be arranging any peep shows. Then I told my friend what had happened and asked her not to visit me at my job for awhile.
My scooter goes 5 mph and the charge lasts 10.
Now, can we please talk about the weather?
-- Kevin Gadsey
"I was at a doctor's appointment," says Rachel Schwartz. "On the way out I pulled out my cane in front of a nurse.
"She said, 'You're legally blind?'
"I said, 'Yes.'
"She said, 'And you came here alone ?'
"Again, 'Yes.'
"Then she realized she had nothing more to say."
Have you heard the one about the deaf patient in the audiology clinic who waited and waited for his turn, and finally asked the receptionist when the doctor would be able to see him? The receptionist said, "Oh, you've missed your appointment. When we called your name, you didn't answer."
Gail runs through a litany common to wheelchair users: doors she can't open, steps at storefronts that could easily be replaced by ramps, ramps built only 15 years after the passage of the ADA, no sidewalks on side streets, sidewalks and curb cuts that are not maintained well enough to be adequate on main streets, sidewalks blocked off by local businesses, concrete parking markers blocking store entrances … and drivers who either tailgate her or almost run over her when she's in the streets.
Dee reports a good outcome when a police officer asked her to please lift her wheelchair and onto the (curb-cut-free) sidewalk. If she could do that, she replied, she wouldn't need the wheelchair in the first place. "The officer did have the integrity to look ashamed and to apologize."
Appreciate what people can do
instead of wondering what they can't do.
-- Kevin Gadsey
K.O. tells me that during her 3 years of working in independent living, she "saw more degradation than I ever wanted to see -- at the hands of the community at large and within my own CIL walls."
Example? "I listened as a co-worker stated she thought it was unfair for disabled people to be parents - it was unfair to the kids. Remember, this was at a CIL. And I wasn't allowed to go to the Statehouse and testify to remove our sterilization law. When I became pregnant, three who were unable to become pregnant were devastated. I understand the feeling, as being a parent is one of the greatest blessings - but they were angry too, because I am a parent who uses a wheelchair and one wanted to know why disabled people were able to have kids and she couldn't."
Sharon Lamp reports on a conversation on the train:
The lady sitting across from me on the subway train has been staring at me for some time. I return her gaze. She smiles and seems to be searching for something to say. I return my gaze to the book I am reading.
"Excuse me, do you mind if I ask how you got in your wheelchair?" she asks.
"I beg your pardon?" I respond.
"I mean what happened to you that you are in a wheelchair?"
I pretend to be confused at her question. "You mean this wheelchair?"
Now she looks confused.
"You want to know how I got in this wheelchair?" I ask.
"Well, yes--if you don't mind my asking"
"Oh no, not at all. I got in this wheelchair by sitting in it this morning."
"No, I mean...."
"Yes, I know what you mean. Seriously, I got in this wheelchair by sitting down on the seat, which is directly under me, you see." I point down at the seat.
"Oh, I didn't mean to offend you. I was just curious...."
"She wants to know what your handicap is," another rider explains to me with a gentle smile.
"Oh, I see. Well, if that's the case, that really is quite an intrusive question for a stranger to ask me, and yes, I do mind being asked! My goodness!"
With that I shake my head in wonder and put on my earphones.
Rachel Schwartz, who is "legally blind and otherwise ill... haven't been given a diagnosis, but call it chronic fatigue syndrome as that is the best fit" has a litany of her own: "There are the people who try to tug me about or grab my arm. I was on a bus, just standing up to leave the bus. Yes, I looked shaky, this happens when I stand up, but my cane was supporting me. This old woman grabbed my wrist - the cane arm one - and held it tight. It hurt a little. But now she had my cane arm, so I couldn't get off the bus, and it took her a while to let go, while I just stood there feeling baffled. When I can speak (sometimes I have trouble speaking), I usually reply with, 'You have my cane arm, now I can't move.' This does seem to help, especially with people trying to lead me somewhere by brute force."
One time, Gail tells me, she "stopped on the sidewalk to zip up [her] coat because it was cold out" and was almost immediately approached by a cop who thought she looked as if she might need help.
Show of hands: who's been waiting around somewhere with a cup of coffee or a can of soda, only to have some passerby fling a coin into your drink?
Ablism is violence.
One of Carol Cleigh's "best/worst stories happened at a bookstore that I frequented in downtown Evanston. I'd just started to open the door when it was ripped from my hand (pulling my thumb painfully). I pulled it back in order to use it to pull up the slight incline at the threshold and entered the store.
"Suddenly I heard someone behind me shouting, 'I'd do the same thing for any normal person!' I turned around and gave this character my best 'you've just turned into a giant bug' look when he shouted the same nonsense at me again. At that point, the store security guard asked if I knew him and I replied that I'd never seen him before. When he shouted his nonsense a third and fourth time -- now loudly enough to stop all other conversation, I replied, 'I am normal.'
"At this point he literally flew at me -- I assume with murder in his heart. Fortunately the security guard stepped in and they both went flying into a shelf of books and merchandise. I high-tailed it behind another counter until the physical tussle was over. I went upstairs to get the book that I'd come for and by the time I got back down, I saw my would-be assailant being led away in handcuffs by Evanston's finest. I bought my book and went home, shaken but unharmed.
"The moral of the story: never forget that ablism is violence."
Ablism can endanger disabled peoples' lives in a variety of ways besides the retaliation of would-be "helpers." Kassiane, for example, was sleeping in a car when it crashed. Her head went through the window and she was knocked unconscious. Half an hour later she and the driver woke up and called an ambulance.
"When the paramedics try to talk to me I'm slipping in and out of awareness. The only things I can say are 'no lights no straps,' because the lights set off my seizures and restraints don't get along with my autism. The concept of 'I don't want a seizure' is a bit past them, because they keep saying they have drugs in case I have a seizure. No dice, allergic. The Medic Alert membership I paid so much for doesn't mean anything to these guys; I keep shoving the bracelet in their faces and they keep ignoring it. I also had to fight to get to take my laptop with me for when the adrenaline died, taking my speech with it."
Once she was in the ambulance, Kassiane says, she got "pretty good" treatment from the paramedics, but the hospital was something else. "The doctor looked at me for all of three minutes. Again, I was unconscious for half an hour. My head broke a car window. I have seizures. But I also have autism and bipolar. The only treatment I received was vital sign monitoring, an x-ray to make sure my neck wasn't broken, a cursory 'no organs are broken' exam, and being told to take Tylenol for pain. No CT scan, nothing for the gash on my forehead, no close observation. I got to hear the nurses talking about how crazy we were because of the meds we took, I got to see them write things wrong on my intake forms, but no real treatment. They also deprived me of my laptop when I needed it to communicate clearly, since 'clearly [I] can talk.'"
But that, she says, wasn't the worst of it. Her records were inaccurate, reflecting different disability diagnoses than the ones she gave them, explicitly saying that she'd told them she never lost consciousness, giving wrong information on medications, and for one drug she takes that was correctly recorded also indicating that she's allergic to it.
"The non-treatment, inaccurate records, being called crazy behind my back, and not being listened to serve me right, I suppose...what was I thinking, telling the truth about the autism and bipolar, in particular? That was just asking for it."
Not a good fit
A lot of the stories Project Cleigh participants are telling are about people being discouraged from, shunted aside from or outright shut out of participation in our world. This is a less overt form of violence than actual injury -- and is therefore more easily overlooked by witnesses -- but it has dramatic consequences in many people's lives.
These things may be done very gently if that's all it takes (I heard from someone who is embarrassed at -- in one of her early encounters with "little acts of degradation" -- how she met a surgeon on public transportation, was interrogated about disability, and was too uncomfortable to tell him to cut it out. I don't know about the rest of you, but I've found myself doing similar things more times than I want to admit); but the threat of escalation is always there -- even when the people reminding us not to get too big for our britches insist it's not. It's just never clear which of these nameless faceless gatekeepers is willing to escalate things beyond our ability to manage.
"I think people in Canada are politer than in US," says Ettina, "because I've never had a complete stranger ask me personal questions. I was shocked once when a mother of twins described being asked 'Do they have the same father?' Most Canadians would never say something like that.
"But I've gotten a lot from people at school with me, both teachers and students. I used to hear classmates whisper mean things about me to each other right in front of the teacher, and she liked me but she never did anything about it.
"One incident I wonder about is that once I was talking about a bullying incident with the guidance counselor and she asked 'Why did they do that?' and I responded 'I don't know, maybe they just hate me.' At the time I had no idea why she asked that but recently I thought maybe she was expecting it to be my fault somehow - a lot of people think it's the fault of the bully victim. Saying it's the fault of the bully victim because they're 'nerdy' or weird is like saying it's the fault of the rape victim because she's beautiful or female."
Chicago's Millennium Park is ringed with signs that -- among other things -- assure us that the park is accessible to people with disabilities. A couple of lines above that assurance, a careful reader will learn that no dogs are allowed in the park .
Danielle has had trouble with her landlady deciding she has the right to decide what Danielle's PAs will do (and what they will make Danielle do), and to fire them if they don't comply.
She's had trouble with a maintenance man in her apartment building deciding he has the right to insist Danielle not watch "depressing" news coverage of Hurricane Katrina.
In response to these incidents and others -- including some involving physical violence -- Danielle limits the occasions on which she ventures out of her apartment. This is another reminder of what Carol Cleigh told me years ago about what homebound means.
Lee Thompson-Herbert went to the hospital with a broken rib and "hobbled" in because she couldn't lift her wheelchair out of her car on her own. After being seen by a doctor and getting x-rayed, she went looking for a bathroom. She reports on a conversation she had with a hospital employee on the way:
"You lost?"
" Looking for the bathroom. There's one right down there, right?"
"No, the one you want is back that way and around the corner."
"That's the handicapped one right here, isn't it? I need the grab bars."
"But you're not handicapped .
"Uh, I am." Thompson-Herbert moves her skirt to show that she's wearing knee and ankle braces.
"That doesn't make you handicapped."
" It does."
"You're not in a wheelchair."
Thompson-Herbert starts to get annoyed. "Honey, I normally use a wheelchair. I have too many broken ribs to push it right now."
"You don't have the handicapped parking tag."
"I do."
"So where is it?"
Thompson-Herbert is now really annoyed. "In my car, where it's supposed to be."
"I'm just giving you a hard time. The bathroom's right back there. Remember there are two doors, lock them both. Happy Holidays."
"I don't think that would have been funny even if I wasn't just barely keeping it together," Thompson-Herbert says. "It really felt like he was playing 'Taunt the Fat Gimp.'"
(Joking and "joking", like ignorant and unthinking, do not necessarily mean okay.)
Gail Nichols' son uses a service dog and used to spend most of his school day in a resource room. The teacher who ran the room, Nichols says, used to tell the boy that his diagnoses -- Asperger Syndrome and PDD/NOS -- didn't indicate that he was really disabled and that the dog wasn't really working. After many attempts to get him to behave like a professional, Nichols finally got a deal in place where her son, his service dog and his tutor would work in a private room away from the resource room teacher. When you combine less-familiar kinds of service dog work and owner-trained dogs, she says, this sort of problem isn't uncommon even after the handlers cooperate with schools to ensure that they have all the information they need to allow only service dogs and not pets on campus.
Some years back a friend of mine brought up "Oreos", "apples" and "bananas" (black/red/yellow on the outside, white on the inside) with me and asked me whether there was a term for people who were "disabled on the outside, nondisabled on the inside." People like Christopher Reeve , who were perceived as embracing disability-unfriendly values despite being disabled themselves. I was ashamed to have to admit that among the disabled people I was working with at the time, the preferred term appeared to be cognitively disabled.
Lu Randall, a former rehab therapist and the mother of disabled sons, shared with me a letter to the editor she'd written in response to a hiring decision by the Monroeville Public Library with which she took issue.
Michael Conner, she reports, is "an intelligent, articulate, organized, soft spoken adult [has] a college education and 4 years of part time work experience in a college library. He has something close to photographic memory, and can recall and find exactly where he read something, not that he has to reference a second time, since it was retained initially."
All the same, when he applied for a job at Monroeville his application and resume were lost. When he applied again, he did not get an interview and no-one phoned or wrote to tell him that they had decided not to hire him.
His mother Terry, on the other hand, did get a letter, informing her that "Michael would not be a good fit."
Michael is open about his diagnosis of "high functioning autism."
Gregory went to a doctor's appointment where the first question the doctor asked was whether he was "all there." Then he left the room and conducted much of his "exam" from another patient's room and from his office while an orderly ran back and forth conveying messages between him and Gregory. The outcome of the appointment was an agreement that the doctor's office would call to arrange for a procedure to be done -- but they never did call. Gregory eventually found a better doctor.
Dee says, "I went to the local grocery, parked in the only van accessible parking spot, and when I came out, someone had pulled a nice, shiny, brand new Ranger into the lined off section for the lift. Gotta love those cell phones! I hope it was worth the $50 it cost him."
Target practice
Sometimes it's the most isolated, inexperienced or vulnerable among us who get treated the worst -- remember the transit rider who got cornered by the surgeon and didn't know how to get free?
Other times it's those who are most threatening to the status quo. I believe that Carol Cleigh is a good example of this. She had a reputation around Chicago (though I have thus far been unable to convince anyone to produce and sell WWCD? merchandise), and she ended up being one of those people to whom nobody wanted to give an inch, lest the rest of us take a mile.
I heard about a woman who runs a CIL's library showing up to work only to discover that the collection had been moved into a hallway, her office had been trashed, and a note had been left to inform her that she and the others who worked with her, described in the note as retards , no longer needed to attend staff meetings.
No more apologies -- Accessibility now!
-- Kevin Gadsey
"The first time" she encountered degradation within the CIL, says K.O., "was when I responded to an article on Ragged Edge about CILs being like sheltered workshops. My boss took it as a personal attack instead of an act of advocacy. Guess I inadvertently struck a nerve."
I heard about a People First group being evicted from their office in a CIL because the CIL wanted that room to store paper in.
And we've barely scratched the surface.
We still want to hear from you. I'm interested in hearing stories of and thoughts about little acts of degradation from people who want to contribute to Project Cleigh, either via email or through the comments form at the bottom of the story.
Kevin Gadsey wants to know whether other people have ideas for slogans that can be put on wheelchairs -- there's a nice piece of advertising space right there, he points out, for those of us who use them -- or cars or on our other belongings.
Sharon wants to know whether people have good responses for the comments and questions she encounters every time she goes out (I swear, the next time someone sees me with another chair user and asks, "Are you racing?" I'm going to have a pre-written 3 X 5 card reading "No. Target practice").
And I'm sure that all of us want to know what's not even on our radar yet, that you think Project Cleigh should take note of.
Ettina and Dee and some other people have already started using the comments sections to hold public discussions on the issues Project Cleigh is meant to work on, and I will continue to post pieces on Ragged Edge in response to the material other Project Cleigh participants make available to me.
We'll be doing this all year, so please don't feel as if you've got to do it yesterday, but it would be great to include as many people in the discussion as want to get involved.
Thank you.
Cal Montgomery dedicates this article to Allied Van Lines, one of whose drivers blocked her access to the sidewalk outside her building for an entire day with, of all things, portable ramps. Cal and Nate were forced into the street every time they went out. Read her first Project Cleigh article. Little Acts of Degradation.
Posted on February 20, 2006