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."
I am a wheelchair-user and I frequently get questions and comments that are similar to the ones mentioned above. For example, some people will see me rush into a store when it's raining outside and they'll say "Hurry! Push that thing!" Or I do get people who look me up and down and say "What is this?! What happened?" I have three different tactics to deal with these comments. 1. Usually, if I'm too tired to deal with the person, I'll look them up and down, sneer, laugh and say something profane to them in French (which I'm fluent in). The person will then be suprised that I speak French (I'm supposed to be stupid, right?) and appear embarrassed because they know I'm insulting them but they're frustrated that they can't understand. It's probably not the most politically effective tactic but I always have fun with it anyway! 2. Most of the time I'll simply be blunt and let them know that their question is extremely shallow and rude. They then feel ashamed and I've accomplished my goal. 3. My third tactic is to take on a very pitying voice and ask "How long have you been so bigoted, honey. I am so sorry. Are you coping?" This also confuses the person and provides a good laugh for me.
I personally don't mind it when people approach me and say that their relative needs a wheelchair and then ask where I got mine. I don't see anything wrong with people going up to me and asking that. I'd be happy to do some resource sharing because I know that finding a high-quality, sporty wheelchair can be difficult, especially where I live. If I rebuke the person that will only send out the message that I'm ashamed of my wheelchair and I don't want to talk about it.
I could go on and on but I'll leave it at this.
Posted by: Catherine | February 20, 2006 08:40 AM
My pastor spoke recently on responding to our "critics". I have endured plenty of degradation over my lifetime, so I was very curious. I guess those who degrade us could be considered our critics. He said our critics will usually attack us at our most vulnerable momemnt, when we can't fight back. And often they will accuse us of what we are most innocent of. This made sense to me. I've been kicked when I was down. I been accused of things I was most innocent of. I was curious to hear how I should respond to these ever-present critics. I anticipated hearing that I should "turn the other cheek."
He offered instead, "gentle rebuke". It is our obligation not to ignore the situation, but we must certainly respond with grace and dignity. We must look at these critics like the wind. The wind makes the roots of trees grow deeper and therefore the tree stronger to endure future wind. Our critics make us stronger to resist damage from future critics.
I nearly always respond to degradation, but I am almost always able to dig down and find the critic's fear, hatred, or ignorance and respond to that person with grace, dignity, and the appropriate amount of "gentle rebuke".
Posted by: brenda Kotewa | February 22, 2006 02:05 AM
Just to set the record straight, that when I sent in my response to this issue, I think I noted that two of my kids have Tourette and some related issues. That actually does not make them DISABLED. It is kind of ironic that they were labeled that way then, in this essay.
That being said, I appreciate the work you have done over the years to take down barriers.
Posted by: Lu Randall | February 23, 2006 03:47 PM
OK, I'm making up a series of T shirts for my own use, and anyone who wishes is welcome to use your printer and make any or all of them for yourselves.
I'M CRIPPLED, NOT HELPLESS.
BACK OFF, BUDDY :)
DO I WANT TO RACE?
NO, BECAUSE I DON'T
WANT TO EMBARASS YOU.
WHERE CAN YOU GET A CHAIR LIKE THIS?
I DON'T HAVE A CLUE.
I WAS BORN WITH THIS ONE STRAPPED TO MY BUTT.
I'M DEAF.
TALKING LOUDER WON'T HELP.
LEARN TO READ AND WRITE.
I WAS SHORT BEFORE I HAD TO USE THIS WHEELCHAIR.
I WAS ALSO MEAN.
SOME THINGS DON'T CHANGE.
YES, I'M ON AN OUTING.
THEY HAVE TO LET US
OUT OF OUR CAGES
ONCE A MONTH.
IT'S THE LAW.
THANK YOU, BUT I DON'T NEED HELP.
NOW, MOVE!
I'M NOT ASKING FOR SPECIAL FAVORS.
I JUST WANT TO BE ABLE TO RUN OVER YOU
ANYWHERE YOU MIGHT BE IF YOU ANNOY ME!
And for those of us who have been told that we cannot park our wheelchairs where everyone else is sitting "because you might get hurt"
I HAVE THE SAME RIGHT TO GET HIT BY
A (BALL, FLAGPOLE, WHATEVER) AS ANYONE ELSE!
Posted by: Dee Wheat | February 24, 2006 02:54 PM
Don't be afraid of the "D-word", Lu Randall. To suggest that you take offense to it being applied to your kids (and capitalizing it so! How severe! I know it's hard to get italics in the comment section, but what's wrong with quotation marks?) implies that you think it's a "bad" thing to be disabled. And that may offend folks who consider themselves disabled and who are "okay" with being so -- and may also contribute to the stigma that is responsible for the "barriers" RE has worked to "take down".
"I love disabled people, but sho' wouldn't wanna be one of 'em!" (I think Mouth's already done a "Dis-labeled" campaign, so I won't contribute it to the list of T-shirt or chair ad slogans.)
Posted by: Evonne | February 24, 2006 06:15 PM
I live in Canada, but in (I believe) a different province from Ettina (though I recognise her from elsewhere online).
I have ADHD and was only diagnosed in February of 2005. I had to find my own psychologist to get the assessment and diagnosis, because my doctor didn't refer me (even though I asked more than once). When I went to him with a file of information, including the printouts of the results from my assessments, he barely glanced at the file, refused to prescribe me any medication, and said he wanted to refer me to a psychiatrist for a second opinion. "You've got this far, so you must not be too anxious." I was 28 years old, barely able to work even 30 hours a week because of the stress (regular meltdowns and depressive episodes), and on the fast track to developing a full-blown anxiety disorder. I found a new doctor, who's been great - he even gave me a prescription for physio when I finally realized I should deal with my tendonitis... something the first doctor *also* ignored.
And just after I was diagnosed, I was very quiet about it. I didn't want to have to deal with the kinds of attitudes I'd heard others express about mutual friends who have ADHD. Everything from "He's using it as an excuse" to "Well, I do that sometimes, so I must have ADD." Right. Because it impacts *your* life as severely as it impacts mine. Because you need a PDA to beep at you to remind you about: meds, PT exercises, cleaning, getting ready for bed. Because you need that same PDA to start beeping at you an hour before you're due to *leave* for an appointment, so that you are able to actually, maybe, just this once, get there on time.
Just today, I went down to my bedroom to grab some Bristol board (so I can make a mini-portfolio for my artwork, which is currently in the living room) and a binder (so I can file my notes on web design and find what I need easily in the future). I talked to my roommate and then started upstairs, remembered the Bristol board, got it, came up to the living room, started to sit down on the couch, remembered about the binder, headed back down to my room, commented that I have way too many binders (which I do; I'm a tad compulsive about stationery products, and that combined with impulsivity isn't good for my pocketbook or my shelf space), came back upstairs with a binder, an unopened package of dividers (like I said, compulsive), my old web design binder (it's too small now), and a 3-hole punch. The 3-hole punch is on the coffee table with a schwack of random stuff that is all mine. The binders are on the couch beside me with the papers that I want to put into the empty binder. And the Bristol board is still on the easy chair with all my artwork, nowhere near becoming a portfolio.
And that's when I *remember* to take my meds (which, luckily, I usually do). Just imagine what it was like pre-diagnosis.
Posted by: Janna | February 27, 2006 01:27 AM
I am a person that was born with various congenital physical Disabilities and my child has Autism and Mental Retardation.
I DO find it extremely offensive that a person might or would state that it is a "bad" thing to be Disabled and having Disabilities and being a person with Disabilities!
To a person who might say or would say that it is a "bad" thing to be Disabled and having Disabilities and being a person with Disabilities is like saying to people with Disabilities that they are NOT OKAY as people and their lives and their daily existence on earth are NOT OKAY!
To a person who might say or would say that it is a "bad" thing to be Disabled and having Disabilities and being a person with Disabilities is like saying to people with Disabilities that they are NOT WANTED in general Mainstream Society and they are NOT WANTED on earth!
The way I see it, for a person who might say or would say that it is a "bad" thing to be Disabled and having Disabilities and being a person with Disabilities, this has the overtones of general Mainstream Society wanting to exterminate ALL people with disabilities from the earth and to prevent ALL people being born with disabilities!
For an extremely long time I was NOT okay being Disabled and having Disabilities and being a person with Disabilities.
One thing that has really helped me in the past of me finally learning to completely accept myself of being Disabled and having Disabilities and being a person with Disabilities IS by being with OTHER people who feel OKAY in being Disabled and having Disabilities and being a person with Disabilities.
Another thing that has really helped me in the past of me finally learning to completely accept myself of being Disabled and having Disabilities and being a person with Disabilities IS knowing about the "Disabilities Pride Movement" within the Disabilities Community and knowing that people with Disabilities ARE TAKING PRIDE IN WHO THEY ARE AND WHAT THEY ARE and that people with Disabilities DO HAVE PRIDE IN WHO THEY ARE AND WHAT THEY ARE.
Being Disabled and having Disabilities and being a person with Disabilities is NOT shameful.
What IS extremely shameful IS the general Mainstream Society's negative barriers, negative stigmas, negative stereotypes, negative ideals, negative perceptions, negative misconceptions, negative fears, and negative attitudes towards and about people with Disabilities and being Disabled and having Disabilities and being a person with Disabilities.
It IS with complete freedom that I can NOW say with complete PRIDE that I AM "DISABLED AND PROUD". It IS with complete freedom that I can NOW say with complete PRIDE both phrases
"DISABILITY PRIDE" and "DISABILITIES PRIDE".
It IS with complete freedom that I can NOW say with complete PRIDE that I am OK OF BEING DISABLED and HAVING DISABILITIES and BEING A PERSON WITH DISABILITIES.
It IS with complete freedom that I can NOW say with complete PRIDE that I AM A PERSON WITH DISABILITIES.
It IS with complete freedom that I can NOW say with complete PRIDE that I DO NOW HAVE COMPLETE PRIDE IN WHO I AM AND WHAT I AM.
Posted by: PRCA | February 27, 2006 10:59 PM
When the topic comes up that I grew up in an abusive household, people tell me that it must have been the strain of raising a disabled child. They rarely tell me that what happened was wrong, only that I should be grateful my parents kept me at home at all. They invite me to see how difficult it is to raise a child like me. They tell me that any abuse was understandable in the context of treating me, protecting me, or dealing with the tragedy of who I was. Any anger I express towards people who say these things is interpreted as me just being a bitter, angry person who refuses to see how much of a burden I am on others.
People do not tell my able-bodied siblings that being who they are caused the abuse, or that they have no right to be angry at anyone who blames them for it.
I do not often go around talking about my family. But when I mention it even in passing, I get this reaction more often than not.
Posted by: Ann | February 27, 2006 11:09 PM
Much of this hit home. Sharon Lamp's handling of the how-did-you-get-in-that-chair and the person who reacts to similar tripe by simpering, "How long have you been a bigot hhoney?" crack me up.
My husband of 36 years is tired of being called brave for being with me. I don't bite or have fleas.
Someone just called for my partner. I said, "He's not here..." Caller: I'll call back. Me [emotional] WHO ARE YOU?" Click.
We were being stared at in a small restaurant. We switched to French, staring back and snickering.
The worst was the tech giving me a lung capacity test. I requested a mask instead of a tube. Request denied as it would interfere with accuracy. After I used the standard mouthpiece, the professional told me that according to the results I was dead.
Posted by: BBarb Bechdl | March 1, 2006 01:05 PM
This is for PRCA and any others who've encountered that particularly pernicious form of discrimination - *IT WAS NOT YOUR FAULT* any more than it is any child's fault when they are abused!!! Please, for the sake of your pride and your mental health, learn this if nothing else: *abusers abuse because they can.* There is no other 'reason' there certainly is no reason that makes any sense. Children, women and disabled people (who may also be children or women) are targets because we are 'weak' - that is because abusers believe that we can't fight back and/or won't be believed if we report the abuse.
You've done *exactly* the right thing so far. You've survived! Now you're strong enough to talk about it. Please take strength to tell those who say it was your fault that they are full of somthing that should only be left in a field by a male bovine. Their attitude is new abuse heaped upon you by new abusers - please don't accept delivery! You are a wonderful person, too beautiful to have to endure such horror. Know that you have supporters who tell the truth.
Posted by: Carol Cleigh | March 3, 2006 11:50 AM
I already emailed Cal a long list of submissions to this project, but I just thought of something else that happened at one point.
I was trying to talk to an organization about access. The organization had not always in the past been too great about even the more common forms of access, so I was expecting problems. I was trying to discuss some of the barriers that some of cognitively disabled people were facing in participating in the organization's events, and people seem to think they have more of a right to justify those barriers than the physical ones, even if they're also being crappy about the physical ones. This is a disability organization, but like many others, it was "our kind of disabled people only" with only token differences from that.
Anyway, they were, as I expected, hostile to the things I said, and insisted that if I didn't come up with specific ideas, I should not be talking about this. (Some of them believed that talking about this was an act of malice in itself.)
I asked someone I knew, who'd been involved in the organization, for ideas, and presented those ideas, without crediting the person, to the group. The response I received was a lot of patronization. I didn't understand the real meaning of access, I was expecting too much, and so forth. But what I really didn't expect, was to find out that they had then asked the person who'd helped me come up with the ideas, to explain to me why "my" ideas didn't work and why I just didn't understand the meaning of accessibility (which is apparently a restricted meaning that only applies to a very limited number of people -- it is "only natural" for people to let my wheelchair in but balk at letting my brain configuration in).
It's really interesting to have it condescendingly explained to you by another disabled person, that you just don't understand that your kind of people is different and in need of things far beyond the range of ordinary access. Even easy, cheap, things, such as announcements of events before they happen.
Some of the same people who applaud me when I take on certain accepted areas of access, view me as asking too much when I talk about rarer kinds, or kinds they don't need, and do the whole condescending routine about how I just don't understand. This isn't the only instance I have of this, it's just the one that sticks out the strongest in my memory.
Posted by: A M Baggs | March 5, 2006 05:36 PM
To A M Baggs:
It is bad enough for the General Mainstream Society to practice "external exclusion",
"discrimination" and "degradation" concerning people with Disabilities!
But it is pathetic when the Disabilities (Disability) Community practices "internal exclusion", "discrimination", and "degradation" with various other people with Disabilities!
The entire Disabilities (Disability) Community needs to remember the phrase "UNITED WE STAND, DIVIDED WE FALL!". This phrase offers an extremely valuable lesson to everybody.
The way I see it, the entire Disabilities (Disability) Community should heed the phrase "UNITED WE STAND, DIVIDED WE FALL!" and the extremely valuable lesson it offers.
IF the Disabilities (Disability) Community is NOT united as a whole, it could mean disastrous consequences for the entire Disabilities (Disability) Community in various different ways.
The General Mainstream Society should NOT see "fighting", "division", "internal exclusion",
"discrimination", and "degradation" within the Disabilities (Disability) Community concerning ALL people with Disabilities.
The General Mainstream Society NEEDS to see the Disabilities (Disability) Community UNITED AS A WHOLE.
***I am a Disabilities Activist, and a Disabilities Advocate, and a Disabilities Self-Advocate.***
Posted by: PRCA | March 7, 2006 03:51 PM
I was in Indianapolis this weekend for a Partners in policymaking session. There were about 20 high school dance teams at the Hilton too. I was on the elevator, and five or six girls from a dance team started to get in and stopped cold when they saw my wheelchair. I told them, "It's not contagious, ladies. Get in the elevator." They did LOL.
Posted by: Dee Wheat | March 8, 2006 03:09 PM
With shame I've recognised things that I've done in the past - thoughtlessly, yes, but all that means is 'without thought'. I hadn't considered my actions.
I can think of a list of people to send this to who will appreciate this, but they're the ones who are trying their best not to be thoughtless anyway. Others would just ignore it - it's not part of their universe, it's nothing to do with them. Even though these are people who work with disabled people every day.
Posted by: Marge | March 17, 2006 06:08 AM
"This is for PRCA and any others who've encountered that particularly pernicious form of discrimination - *IT WAS NOT YOUR FAULT* any more than it is any child's fault when they are abused!!! Please, for the sake of your pride and your mental health, learn this if nothing else: *abusers abuse because they can.* There is no other 'reason' there certainly is no reason that makes any sense. Children, women and disabled people (who may also be children or women) are targets because we are 'weak' - that is because abusers believe that we can't fight back and/or won't be believed if we report the abuse."
I agree - expect it was Ann who posted that, not PRCA. I've gotten confused by the layout too - PRCA posted the massage above Ann's.
In some cases a kid is abused because they're disabled, but that doesn't justify it, any more than being a girl justifies sexual abuse (because some girls are abused because of their gender). It especially horrifies me that people would say that considering abuse survivors so often blame themselves for the abuse. I feel that people have a special responsibility not to be rude to people already prone to self-blame, because it's more damaging. (Of course, you shouldn't be rude anyways.) Reminds me of Neville Longbottom in the book Harry Potter and the Philosopher's Stone saying "You don't need to tell me I'm not brave enough to be a Griffindor, [Draco] Malfoy already said that."
Posted by: Ettina | March 17, 2006 06:31 PM
The proverbial "other side of the coin": We hear from those who lament the fact that people often
don't help when help might be needed. One person in a wheelchair might need help with(for example) opening a door, while another with the same/similar disability doesn't need help. It isn't always obvious within the first few seconds of an encounter, and people can't read your mind. I think the general public is thoroughly confused---is it insulting to help, or if they do nothing,will this be perceived as "proof" that the disabled have been made "invisible"? I sure don't have the answers, but I think some anger and indignation could be eased by recognizing that non-disabled people usually have good intentions, but sometimes feel that those who have disabilities have put them into a "damned if you do, damned if you don't" situation.
Posted by: DHFabian | March 30, 2006 09:09 AM
This is my first visit to this web site. I just wanted to say how much I appreciate all the stories posted here: they remind me that the frustrations and weariness I often feell as a blind woman living my own life are not merely products of an overactive imagination, or blown out of proportion by my chronic depression. Thanks to everyone for their honesty here, and for keeping the edge sharp on topics usually perceived as being best discussed in nice, accomodatingly equable terms! Please visit my web site and send me some feedback: I thought I was sort of a lone wolf, trying to show a truthful reflection of life "despite" disability! Have a great weekend!
Posted by: Amanda | April 1, 2006 10:35 AM
Thank you for this blog. Thank goodness I found it.
Posted by: Estee Klar | April 5, 2006 07:58 PM
It's quite easy to find out if someone needs help. Simply ask, as you would someone without an obvious disability.
Posted by: Dee Wheat | June 12, 2006 03:51 PM
Wherever there's a cash register, chances are that folks just have to wait in line behind me...
If I use a debit card to pay, I can never remember (fibromyalgia, large doses of antihistamines for mastocytosis) how to turn it the way that allows it to be slid it through the machine (right-left disorientation).
If I pay cash, I can never remember (fibromyalagia, large doses of antihistamines for mastocytosis) where I set it aside so I don't have to spend ten minutes fumbling around for it and dropping it as I slowly extract it from my tote bag (Dupuytren's contracture in both hands).
Just as ornithologists know the intriciacies of bird song, I have come to know the intricacies of indignant-human huffing noises lined up behind me, albeit they are far less melodic.
The "Lady, what the hell is your problem" huff. The "I just want to get this squirmy kid home before he pees his pants" huff. The eye-rolling "Jeeezus, just get ON with it, I'm holding this giant case of beer" huff. And my favorite of all, the "I am TOO important to be subjected to this contemptible inferior's time-wasting nonsense" huff.
One time my daughter and I were in line at a coffee shop, all sad and weary, right after visiting a dear friend who was close to death from cancer. As I began my even slower than usual payment procedures, the unmistakable sound of the "I am TOO important..." huff arose sharply to our rears.
Followed by the sharp stamping of designer heels and a brisk whisk of tailored pastel suit and some thousand-dollars-an-ounce-dead-animal-perfume: the huffee cutting in front of us, elegant nostrils all aflare...Now THERE was a woman with her priorities all in order, let me tell you.
Whereupon my daughter, who has ADHD, zinged out: "Don't you DISS MY MAMA like that!"
God bless the ADHD impulsivity of my daughter...
The woman STEPPED BACK. Even she could know real power when she encountered it...There must be hope for this world, no?
Though I don't know how much hope there is for me and my daughter. All the way home we wickedly reenacted and revised the scene, putting snobbily accented words in the woman's mouth like "Fol-de-rol upon your dying friend and multiply disabled mama! I have a manicure shhheduled!"
Posted by: Mary Krane Derr | August 16, 2006 12:07 AM