'Little Acts of Degradation': Ragged Edge Online launches Project Cleigh
Dear Ragged Edge Reader:
I'm writing to ask you for help with my New Year's resolution this year. I'm hoping that you will write me with your stories about those little acts of degradation to which other people subject us. Those little reminders to us that we need to know our place in the world, and any ways you have come up with to respond to them.
Here's my resolution: in 2006 I'm going to work much harder at addressing the constant battering against my sense that I deserve justice, and the way other people (often unconsciously) are reminded that justice isn't even something that can be contemplated when it comes to people like me. |
I don't know for sure yet what I'm going to do with them. Well, I'll write, of course, and report back. But I'm not sure yet what form that writing will take. I only know that I need to write about the phenomenon of the many indignities we are subjected to when we go out our front doors or let the world -- through TV, radio, internet, newspapers, magazines, books, and so on -- come in. I've only got a clear sense of urgency and a clear sense of inspiration. I'm building from a conversation with Mary Johnson, and I'm calling this one Project Cleigh after Carol Cleigh, one of the strongest activists I know.
"You didn't tell me about that," Mary emailed me while she was editing my recent piece on Getting the Truth Out. She was talking about the whole new set of ways that people force their attitudes about people like me on me, now that I have my puppy Nate. I'd eagerly told her how great he is. I hadn't bothered to tell her how lousy people on the street or at the vet's can be.
It's the same old attitudes, of course. "People like [me]" -- whoever that is -- haven't the right or the ability to decide whether, let alone how, we're going to do the most minor thing. We should drop everything to satisfy other people's curiosity about us, and we should do it in a manner that is pleasant and convenient for them even if it is physically impossible for us. We have no right to object when they interfere with our communication, our decisions, our bodies. We should wait patiently and mind our own business until they're finished interacting with the people (and now apparently the dogs) who happen to be with us. You know: the usual stuff.
Well, no, I didn't tell her. First, I was too busy telling her about what a great dog Nate is. Second, other people's attitudes are an old story, old enough to be kind of boring.
Nate and I are at our first vet appointment. I picked him up at the airport less than three days ago, and this is one of my first experiences with other people's reactions to me with a dog. Already the people in the front office have made it clear that they'd rather talk about me with one another than have to deal with talking to me. On the other hand, unlike a great many people who are flummoxed when I point to the text display on my communication device or hand them a hand-written index card, they do seem able to read and comprehend what I have to say. So that's a good sign.
In the examination room the doctor won't look at me. She's speaking very rapidly; I'm only understanding bits of what she says, and the bits I get aren't very helpful. "Dogs get fleas." "Puppies need vaccinations." I know this stuff. When I ask questions -- I really want to know whether she suggests I stick with the food he was getting before or switch to something else -- she speaks faster but not, so far as I can tell, about the subject of my question. Eventually I give up.
She hands me a "New Puppy Packet" and I'm grateful. I'm good at reading. But it's full of advertising materials. The same doctor who didn't want to take the time to discuss what Nate should be eating slows down as she goes through the packet extolling the virtues of each product. I do ask her whether the dog health insurance kicks in before he's 6 months old, because the plans I've looked at have a 6-month minimum enrollment age. She seems surprised that I've even considered the matter, but she doesn't know the answer to my question. She knows I should be sending these people money, but she doesn't know whether they'll take it.
Finally, I go out to the waiting room to settle the bill. As I'm leaving, the vet comes out with a hand-written note and a phone number. "These people train therapy dogs. You can call them, and they'll help you."
Mary pointed out that as far as a lot of people are concerned, this isn't an old story. It's not even a story at all. To a lot of people, the phenomenon is completely invisible.
In fairness, it's largely invisible to me too, most of the time. I tune a lot of it out: I have to, or I wouldn't be able to bear getting up in the morning. I'm noticing it now for two reasons: it's taking new forms and it's happening more often. People used to ask nondisabled people who aren't even with me whether I've really pressed the right button in an elevator that serves two floors; now they also debate whether they should take my dog home with them so that he'll be properly cared for. I used to spend days sometimes dealing with both the trapped and the peaceful feelings that came with staying in my apartment; now I go out every time I suspect Nate is fixing to pee on the carpet.
Every few hours I run up against people who feel free to remind me that I'm their inferior and that I should conform to whatever they've decided "people like [me]" are supposed to be like. Every few hours I run up against people who are so convinced that this is true that they are mystified that I'm not grateful for the experience. Every few hours I run up against prejudice that now affects not only me but my dog. Every few hours.
Nate and I are waiting to cross a street. Just as the light changes, a woman steps into the curb cut, turns around, and reaches for him.
I'm trying to get both him and me away from her, but it's hard, because she's much more nimble -- I wasn't really good at evading other people's hands when I just had four wheels to keep track of, and now I've got four legs on top of that. She just keeps moving around us, grabbing at him, and babbling about how she knows us from "the summer."
She doesn't. Nate only arrived in Chicago in November. She's also asking me questions and not looking at me, which is a dead giveaway that she's never actually communicated with me before.
Hands all over him, encouraging him to jump up, and I'm reprimanding him every time he tries and still trying to get the two of us away. Nate's getting frustrated; I'm getting frustrated; she just keeps grabbing and babbling.
And then just before the light changes again, she dashes off across the street. I spend the red light calming Nate down again.
And as long as this phenomenon remains invisible to the people who perpetuate it, it's never going to change.
Mary shouldn't have had to remind me of that, but I have to admit that she did.
But what can I do?
When I moved to Chicago in 1999, one of the immediate blessings of the city was getting to know some of the activists here. Good people and great colleagues. I am grateful to have had the opportunity to have met them, let alone worked with them. Carol stood out in that group, though: she is the only person I have met who has been consistently willing to drop everything and respond to an act of discrimination. The first summer I was here, I recall being at some big event with a couple of other people and having someone roll up to fill us in that when the bus to the event had a broken lift, Carol had blocked it and been arrested. No one was surprised.
Most of the rest of us have good reasons not to be like Carol. We've only got so much in the way of resources, and we've got to pick our battles if we want to have a life. The closer to home that we muddy the waters, the narrower the world is in which we can relax. We learn that in certain battles we will not be supported by others, and choosing not to fight at least lets us retain the illusion that we have more friends and allies than we really do.
These are true of Carol, too, of course; she has been more willing than some of us to pay the price. As Mary and I had that conversation -- and speaking for myself alone -- I began to realize that I have begun "going along to get along" more than I am comfortable with in recent years. So here's my resolution: in 2006 I'm going to work much harder at addressing the constant battering against my sense that I deserve justice, and the way other people (often unconsciously) are reminded that justice isn't even something that can be contemplated when it comes to people like me.
James Cone's Martin & Malcolm & America is a book which has been very helpful to me as I have thought about the variety of different approaches to injustice which a movement like ours needs. |
There are other reasons, too, for people to do things differently than Carol does having to do with a difference of opinion on which tactics are appropriate in which circumstances. Some people, for example, have taken to heart the old adage that you catch more flies with honey than you do with vinegar. I know there have been times when I have respectfully disagreed with Carol about tactics.
But I know that we need a range of tactics out there. Those people who seem to the people in power to be "like us" gain legitimacy from the methodological differences between themselves and the often-"scary" outsiders ("see? we're not like them!"), and at the same time the "like us" crowd's failures when it comes to achieving justice legitimize the people who have had enough and take to the radical edge of the movement. We need people like Carol. In fact, I think some of us could stand to be more like her.
Having decided, then, that I must do more to struggle against the constant ways that both my neighbors and I are reminded that I am not their equal, the question becomes: what? I'm lousy at comprehending situations in realtime; I am almost entirely unable these days to communicate effectively with random strangers; much of what I have seen Carol do is completely beyond my abilities these days.
And here I come back to that email exchange with Mary. We're writers: we write about this stuff, and we hope it makes a difference. But I don't know what I can write. And here I come back to my appeal to you. I hope to hear from other Ragged Edge readers about the constant reminders and -- as Carol reminded me to make sure to mention -- about any ways they've found effective in responding to them. Please tell me stories, and let me know whether I have your permission to quote you by name, and I will write about what I learn from you and from my own study of the problem; and maybe between us we can come up with ways that we can struggle more effectively against these attitudes.
Thank you very much.
Posted by Cal Montgomery (montgomerycal@gmail.com)
Cal Montgomery writes frequently for Ragged Edge. Read her articles Ripples, A Tide, An Ocean and Drugging Dr. Sell.
Get to know Carol Cleigh through her articles for Ragged Edge:
Creating Access, Now and for the Future
Backsliding and Bigotry
Riding Lessons
One of the ways we can inform people is by telling our stories. I am a storyteller. I am working on getting an online magazine going called Wildflower Stew at http://wildflowerstew.org/mag I am disabled too and I want to carry stories from disabled people - from activists and from anyone who has a story to tell. I am into good storytelling. It can make a lot of difference. It's an art form that people can get into, listen to. It's not the only way to be active and make changes but it has it's place - like music and art and taking to the streets and writing your congressperson and all of that. Maybe we can collaborate. Maybe you can write and find some good stories and I can publish them. I can also write a few myself! Look at the magazine and tell me what you think.
Posted by: Swan | January 5, 2006 10:44 AM
Dear Cal,
I found your article to be very interesting and well written. I work in a CIL and come in contact with many people who share your frustrations. I will refer them to this article and ask them to comment and send their stories. I have a hearing impairment and do not experience myself the "acts of degradation" that you and many others do but I most certainly see it on a daily basis. Reacting to and correcting the uneducated is a difficult task at best. I have found that most people are "stupid" to the realities people with disabilities experience. Educating our children I believe is the first step, the children will then educate the adults. I do believe we also need the "radicals" to invoke real social change, that's how it has always been and always will be. Society does not listen unless you scream! I am hear to scream when asked to and when I need to. Thank you for your time. Corrie
Posted by: Corrie Herrera | January 5, 2006 12:40 PM
I wrote this whole thing, and then I got so scared that if I posted it, people who have done nothing wrong -- aside from being born -- would get screwed that I am sending it to your editor by email to forward to you. That's how bad the daily bullshit is, OK?
Posted by: PITA PABU | January 5, 2006 08:03 PM
Cal,
Thank you for your new year's resolution and for your very complimentary comments about my activist career. As you know, I've never felt that everyone can or should emulate my 'style' of activism. I am always gratified, though, to have others' support.
I have a story or two to share but I'd like to make one comment first. That is that most of the 'in your face' stuff was done while I lived in Evanston, IL (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.
That said, one of my 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 ableism is violence.
Yours,
Carol
Posted by: Carol Cleigh | January 6, 2006 02:50 PM
Just finished reading the article, and I do have a story of my own to tell. 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.
Posted by: Jessica Moore | January 7, 2006 01:12 AM
Dear Cal,
This is a happy person on this end of your monitor. This article speaks of those things that hardly anybody speaks about in the disability community. These, 'little acts of degradation' happen on a constant basis. Some or most of us are intuned to what they are, others are not perhaps due to upbringing, circumstances, disabilities, choice or what have you. Others know and hate these 'little acts..' who nevertheless, like yourself, found themselves 'going along to get along.'
Then there's the able bodied community, the do-gooders et al, to educate as well. It would be a grand thing if we continued in this endeavor so this reality is fixed into our heads. This way they can never be considered "invisible" again. Or at least to most people, either abled bodied or disabled.
To tell you the truth this really makes me happy to know that you are collecting this data on the degradations and other such things and putting it into some format of writing. Perhaps from there to not let go of this but keep at it, (like we do "accessibility" or "curb ramps," and all the other things that seem to take center stage, and for a good reason in those issues--I'm part of that as well!), so we have a solid foundation begun to begin to build upon more often than it is at this time in history.
These 'little acts of degradation' and all of those other insulting or humiliating acts we put up with during the course of a single day are what we also need to make just as important as any other portion within the disability community.
These constitute the largest portion of our lives. They define for us, the community and the next generation, who does what, who does not do what, who has the say in this, who does not have the say in this, who is allowed to have pets, who is not allowed to have pets, who is capable of reading or understanding and who is not capable of reading or understanding, who can define their needs, who cannot define their needs, who we hire or fire, who we cannot hire or fire, when we can open a door, when we cannot open the door, when an act is insulting, when an act is not insulting, when we need assistance, when we don't need assistance, when someone is intruding our private space, when someone is not intruding our private space and many many others as I'm sure you already know with your experiences ---
ALL these and a zillion other things define our existence and the quality thereof.
If, by your not being able to speak in words like they do, others decide you are inept to care for your puppy, they, as you can clearly see, are trying to define you, your capabilities and your very existence. Same with all of us. If people are truthful about what is happening and will open up, this is the only way in which we can better build upon this foundation in this arena of 'little acts of degradation.'
This is a grand undertaking you are taking on and it is one that is about time. This just might produce for all of us some new definitions of activism and understanding of these 'little acts...' to better our quality of life substantially. Thank you!
You are probably getting quite a load of letters by now, but you can count on one from me.
From experience, it can easily go from 'little acts of degradation' to pure raging physical violence.
As Carol said above: "The moral of the story, never forget that ableism is violence."
I second that opinion as the chief cause for commenting. The equally second reason is our 'quality of life and lifestyles' with which we ourselves chose to live.
All these "little acts of degradation" are causing great harm.
Sincerely always,
Denise
Posted by: Denise | January 7, 2006 03:22 AM
Cal Montgomery & Mary Johnson, you rock!
Not only will I be delighted to contribute to this "Project Cleigh" I am adopting Cal's New Year resolution if you don't mind. This crip's "grin and bear it" routine is going out the window in 2006! Just reading Cal's piece and some of the early comments (thanks to all of you for sharing these!) has already given my spirits a long overdue boost.
In the long run, I think Project Cleigh should be turned into a website. The healing and empowerment process that this project promises to jump-start for so many of us who are being shamed and degraded on a daily basis needs to be maintained and developed over the long-run. Please don't take this project away when your writing on this topic is done. Already, I cannot stand the thought of this being only a short-term effort.
God bless you Cal Montgomery. I don't want to sound over dramatic, but given the relationship between repetitive acts of public derision/abuse of pwd's and chronic depression, this effort 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.
Posted by: SAM | January 7, 2006 03:40 PM
Tiny Tim's No More!
I love it! Where can I get a "Project Cleigh" t-shirt?
How about "Project Cleigh: Dare To Resist!"
Posted by: Jazzed | January 7, 2006 03:54 PM
Thank you, Cal, for giving me a New year's resolution to work toward. I've taken the past year off from heavy advocacy since I moved cross-country and started a new job at a CIL. Now, I'm ready to get in the ring again and your words led to my own thoughts for 2006. I've decided to make posters to hang from my wheelchair to confront bad attitudes and ableism.
Do you want to be pitied when you are 80 and in a chair?
My scooter goes 5 mph and the charge lasts 10 mph. Now, can we please talk about the weather?
Inaccessibility=Inequality
Make your business accessible - you're only 15 years late!
Appreciate what people can do instead of wondering what they can't do.
No more apologies - Accessibility now!
Does anyone else have creative slogans? I saw last year that people are selling advertising space on their wheelchairs. It's time we used that space to communicate our message.
Kevin Gadsey
Juneau, AK
Posted by: Kevin Gadsey | January 9, 2006 04:26 AM
Dear Cal,
I find problems all the time, from the curb cuts having too many cracks in them, to the post office and the village hall has double doors without automatic openers. Just recently, the podiatrist invested in making a ramp for the tiny office that they're located in. Hello?!!! This is 2006, when did these people hear of the ADA? Now there is a new building in town that managed to build stairs to the front of the sidewalk that I can't get into because there is no visible way to get a wheelchair or mobility cart up two concrete stairs. I won't be patronizing those businesses anytime soon because I can't get in them. They built the tavern in town so I could come in and get drunk, but there is no way to get ice cream, which has steps to it's entrance. The some of the sidewalks are very hard to travel on because of the extreme slope, and cracks in the sidewalk. Some of the stores are inaccessible even if they are located at ground level, because the entrance is blocked by concrete parking markers. Menards has cut off the sidewalk to what is left of the mall. So I always have to go around this big monstrosity of a store to do other shopping, or go to a restaurant. When I take to the sidestreets because there is no sidewalk, there is always some car riding my tail, like I have nothing better to do than to entertain them. The parking lot I have to ride on is full of potholes and cracks. Crossing the street to go to Walgreens is a hassle, because I was nearly run over by some car who thought he could turn fast without looking. That was the worst I had ever experienced so far. Then there was the cop who had to make it his business to "see if I was alright". I had stopped on the sidewalk to zip up my coat as it was cold out. But he treated me like I didn't have a brain cell functioning, like I escaped from a nursing home. No!! There's more, but it would take all day.
Gail
Posted by: Gail | January 10, 2006 01:57 AM
"Appreciate what people can do instead of wondering what they can't do."
I like that Kevin. Great slogan.
Posted by: Gimpy Mumpy | January 13, 2006 04:56 PM
To the people who've responded to the Project Cleigh call so far:
Thank you. I'm really grateful for the amount of response that I've gotten, and I apologize for not answering everybody individually yet. If you've given me your email address, I will reply personally at the start of next week.
We've got a bunch of good stories and insights. What I'd like to do, if this is okay with you, is to write a piece discussing what's been submitted, quoting some people who've said that's okay and summarizing some of the responses where I don't have that permission but the identity of the person can be disguised without distorting the story. I am assuming that anyone who's posted their response at the Ragged Edge site has given me permission to quote them, and that I may quote small portions of pieces published elsewhere. With everyone else, I'll go back and double-check that I understand what I do and don't have permission to do and so that I am sure I understand every story.
Then I'll submit it to Mary Johnson at the end of January, ask again for responses and stories, and see what we get in February.
Is that okay with everybody?
Again, I really want to thank everyone who has taken the time to write -- it means a lot and I believe that our work can make a difference in the world -- and to apologize for being slow in responding.
Cal
montgomerycal@gmail.com
Posted by: Cal Montgomery | January 13, 2006 04:58 PM
Carol, I really wanted to answer you directly.
I have always known you to be supportive of a range of activist styles, and I really appreciate this. Like you -- I believe -- I don't think I should be exactly like you, and I don't think that everyone in the world should be more like you than they currently are.
But I do think that I can stand to be a bit more like you in my willingness to challenge "little acts of degradation" and I know that it's easier for me to do it if I'm part of a community that supports me in those challenges. Based on the responses Project Cleigh has been getting, I think there are people willing to form such a community, including some who would be open to doing some more challenging if they, too, are supported.
I am very grateful to all of those people, as well as to you.
Cal
montgomerycal@gmail.com
Posted by: Cal Montgomery | January 13, 2006 05:02 PM
Dear Cal,
What you have in mind sounds good to me. Others will have to speak for themselves of course.
This is great to hear that many responded! And, yes, with others support, many of us, I'm sure, would be more willing to stand up one way or another to these acts of degradation.
When we feel alone out here and feel there is no support or community, it keeps many silent. Not to mention the depression that comes along with that. While I can't speak for anyone else, this much I can say, being in isolation does harm in many ways. No one is an island.
Once we all begin to realize that we really do stand by each other, we really do want to have and give support to others, we really are tired of these acts of degradation towards us and really do or would like it a whole lot if we had someone to speak with, whether that be the community as a whole or email or otherwise, it sure inspires a person.
This in itself, is a movement within a movement.
Well, it feels that way to me and I might add, this is an inspiration. Thank you!
Sincerely,
Denise
Posted by: Denise | January 14, 2006 03:38 PM
I liked this article very much because it reminded me of a situation I went through just this last November at a Doctor's office clear over in Tampa, Florida. I made it over there in the morning and waited over an hour or more. When finally I was next I was led into the nurses room for vitals then into an exam room which had one of these large exam tables that looked like the Swiss Matterhorn. The next person to come in was this person all in his operating garb sailed right on by me without introducing himself,flops down notes and charts,etc. I thought it was just another tech person. He then insults me by asking me if I was all there! I just snapped back asking him if he was the Doctor! Things got a little worse as he asked the in house orderly who only was trying to act like the Doctor's equal. Yea like in a million years! The doctor was like only talking to him I did try to get one point in which I did. The doctor did not even take time to understand me,but instead used the orderly as a translator while he was back with another person then back to his office while the orderly was back and forth with questions then my replies. I undertood that they would call me to set up the procedure date which they never called. Well I got fed up and decided to go back to the same outfit in Pinellas,although the procedure I had there landed me in the E.R. Having another doctor instead who his taking his time with me with better care. I did not spend $130.00 in cab fare to get treated like a lump on a log ! After all it was very windy that day and both cabbies had trouble keeping on the bridge and not in Tampa Bay! I was lucky to have kept the appointment let alone risking life and limb. The grass is not always greener on the other side.
Gregory
Posted by: Gregory | January 15, 2006 05:24 PM
I'm not sure how I stumbled onto this site...I follow a lot of disability links from a lot of sources. This one I bookmarked, which shows how impressed I was even at first glance.
I'm a retired R.N., retired because the cumulative stress on my joints caused spinal fractures and the collapse of both knee joints, among other reasons.
I have very little patience with people who feel that the disabled are second class citizens. Ok, I admit it...I have NO patience! One of my favorite sayings is that tact is a virtue, it just isn't one of MINE. Not only is it a favorite saying, it's the unvarnished truth and I apologize to no one for it. I am raising a 17 year old grandchild whom I've had from birth. She's active in sports, color guard, winter guard, drama club, FFA....the whole gamut. I take pictures for three bands and winter guards, as well as three newspapers, the kids, and their parents. I have no tolerance for people who think that I am in any way unable to do what I came to do at a competition. I've had many, many people over the years who offered to "help" me, or told me that I couldn't take pictures from the center line of the court at a winter guard competition because I might get hit with a flag pole or a rifle or saber during a performance despite the fact that there were people sitting on the bottom bleacher exactly where I wanted to be to get the pics I needed. Have you ever tried to explain to someone that you deserve the same opportunity to get whacked with a flag pole that everyone else deserves? I've had band boosters question my newspaper credentials,until they saw my power chair zipping all over the place while I'm continuously snapping pics. After the first time, they don't question it. One of the band directors, the first time that I took pics of his band, asked if I needed him to do anything so that I could get good pics. I told him yes, he could stay out of my way and not whine if I ran over his foot. That was five years ago LOL. He's never asked again. He just gives any newbies in his helpers the same instructions I gave him.
Unfortunately, I haven't trained my fellow townspeople as well as I've trained band directors and band boosters. I live in a little valley with two, literally, side by side towns in it. The towns are old, the business buildings are old. Most of them cannot be made accessible without spending a great deal of money, and it's not an affluent area. I do understand that, and I try to be reasonable about it. For instance, my insurance agent has said that all I have to do is pull up and honk, and he'll come outside to take care of my insurance needs...and he does. Since there is no way his office could be made accessible without ripping up sidewalk and making a heck of a mess, I consider that a reasonable accomodation.
The public school built a new gym about five or six years ago, which the superintendent insisted was accessible. Well, it was...if you had a key to the high school and a key to the elevator to the second floor and then went from the elevator to the other end of the building to a ramp that went down. It took me three years, but he's now unemployed and there is a construction company pouring a ramp. My next project is the football field LOL. The telephone company opened an office here. One day they had a contractor out there, trying to figure out a way to make it accessible. I spent a couple of hours with him and them, trying to figure out a way to make it accessible. He finally went to the town council to ask for permission to use a foot or so of sidewalk to make it ADA compliant, and they turned him down. The phone company now has an attorney representing them to force the town to do its part to help them become accessible. A small victory, but I'll take it.
The parking lot for the little strip mall where the only grocery store is is another story all together. I contacted the absentee property owner months ago because there was not a single parking place where I could get my wheelchair out of the van and be assured of having clearance enough to get it back in when I was finished shopping. they put in one van accessible space and a sign saying it was a van accessible space, which someone ran over within a week. The parking lot wasn't remotely ADA compliant. I called them again, and their "contractor" came and painted some yellow lines and left. I called again, and he came and put up three signs. I called Friday and left the message that I have been being reasonable for four months now, and my patience was at an end. I expect a call Monday, and if things are not brought up to standard by Friday, I'll be calling the DOJ.
Have I mentioned that I'm a member of the 2005-06 Indiana Governor's Planning Council for People with Disabilities Partners in Policymaking class and that I have become a disability advocate on the local and state level and am working on reaching the federal level as well because the prevailing attitudes, which I thought were bad enough in California where I moved from eight years ago, are absolutely intolerable here in southern Indiana? To be honest, I wouldn't be surprised if there weren't still some "looney relatives" locked in attics here, and I'm NOT being facetious.
I've been asked by a police officer if I could lift my wheelchair onto the sidewalk when I was in the street because there were no curb cuts. When I replied that if I could lift the thing I wouldn't need it the officer did have the integrity to look ashamed and to apologize. We've since become good friends, in fact. It's still a day-by-day fight, from people who don't know what to say or do so they pretend you aren't there to stores that try to maximize their display space by piling things in the floor and make it impossible to shop.
There is hope, though. Last year, there was a band director who got frisky about where I and my wheelchair were going to be allowed, and our winter guard girls were there. One of them got right in his face and said, "Look, she may be a little old gray haired grandma in a wheelchair but she's OUR little old gray haired grandma in a wheelchair and if you intend to give her a hard time about ANYTHING you'd better be ready to whip all 15 of us first." He told her that he was the competiiton director and he could keep them from competing. She replied that he could, but he'd better be ready to explain himself because they were not going to be quiet about it and they would file a complaint with the school district. Guess who backed down?
The next generation is, I've decided, our hope. Get involved with them, and I don't mean going to the school for a talk. Volunteer in a class, help with an after school program, GET INVOLVED. Get to know them as people, and let them get to know you as a person, not as a person in an wheelchair or a person who is deaf or a person with some other disability, but as a person. When they see you as a person, they will come to see others as persons, not persons with disabilities.
Sometimes I think we in he disability community are our own worst enemies. We become fixated on things that, in the final analysis are nice, but aren't really going to accomplish what we want. A prime example is "people first language". I try and try to explain to people that the words don't really matter. Regardless of what we make politically correct, the thing that counts is making people realize that WE ARE NOT ALL THAT DIFFERENT. Words aren't going to do that. We have to change the world literally one person at a time.
Oh, and Cal, about Nate: I have four ankle biters, three cats, and three snakes, every single one of them rescues. They're all fat, sassy, and spoiled rotten. There are two words for people who think you can't take care of Nate, and they're two I use frequently:
BITE ME!
Posted by: Dee | January 15, 2006 08:50 PM
I remember once trying to explain to my high school why I was refusing to answer my teacher when he said (in Spanish, so we'd learn Spanish) that "people in Japan speak Japanese" - wanting me to say "verdo" or "falso". I was doing that, I said, mostly because I felt it erased the Japanese citizens who don't speak Japanese (immigrants, babies, speech disabled, etc) but also because as an autistic person I tended to focus on detail. The completely ignored the first, more important reason and started talking about what should my teacher do if I was insisting that he call something "red, white and blue" when it was mostly red with bits of white and blue, or something like that. I tried to explain that I was OK with that, I would usually mention that there was also blue and white but would not get upset or refuse to cooperate if he said that. But they didn't listen. They had found a way to paint it out as entirely my fault (or the fault of my autism) and insist that I must conform.
Is that the kind of thing you want to know about, or is it too minor (because I'm mildly autistic, chose to take that class and could easily self-advocate even if they didn't listen)?
Posted by: Ettina | January 16, 2006 07:25 PM
i use a power wheelchair. here's a sample of comments i get on a regular basis when i go out in public:
-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 mother/father/brother, etc. are having trouble getting around. where can we get one of those?
-my mother/father/brother, etc. can't walk well and...(description of relative's symptoms). what do you think about that, does it sound familiar?
and when i go out in public with friends and others who use power wheelchairs, the question/comment i hear a lot is:
-are you on an outing? or, nice day for an outing!
now, i spent several decades of my life walking with the use of braces. 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, etc.--it is the repetitiveness and accumulation of all of these reactions that serve to separate and dehumanize people with disabilities in public places.
btw, if anyone has an effective response to the "are you on an outing?"-or any of these odd questions, please let me know.
Posted by: Sharon | January 18, 2006 03:13 PM
Ettina, nothing is too minor. It's the small things that hurt our souls. The big ones just make us mad.
Posted by: Dee | January 18, 2006 06:29 PM
Well, Sharon, my favorite answer is, as I told Cal, "BITE ME!" However, I have been known to use "Yeah, they have to let us out once a month, it's the law", "How should I know where to get one of these, I was born with it strapped to my butt", Fast enough to run over you", "No, I don't want to race because I don't want to embarass you", If you lean on my chair again, I'll run over your foot", and similar statements. I only, however, use these on adults. I was in a department store shopping with my dauhter...well, let's be honest, she was shopping and I was sitting around waiting...when this absolutely adorable child who was about four walked up and said, "Oh, are your legs hurt? I'm sorry." Her mom immediately fussed at her and apologized, and I told her that there was no need for apology because the little girl was simply asking a very polite question and that if she didn't ask, she would never learn. The mom said there were many people who didn't feel that way. I told her I didn't mind, and the little girl was welcome to ask me any question she wanted, and we talked for about ten minutes. We talked about why I wasn't shopping but was just sitting there, and she asked if I had a pic of my daughter, which I did and showed her. We were still talking when my daughter showed up and the child flashed her a big smile and said, "I saw a picture of you, and you're beautiful." My daughter looked at me and said, "You find great kids no matter where you go. Why are they never brats around you?" and laughed. I told her because she filled my brat quota before breakfast. The little girl looked at her and informed her that she would never be a brat around someone as nice as me LOL.
My point is, it's a balancing act LOL, just like most things in life. However, you're more than welcome to adopt any of my one liners LOL.
Posted by: Dee | January 19, 2006 12:23 PM
I think people in Canada are politer than in US, 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.
I was chatting with my Dad about this and he described how once he noticed a woman in a wheelchair heading towards the elevator while he was entering and he held the door for her. She entered, and as he was closest to the buttons he asked "what floor?" and it turned out they were headed to the same floor. When they got there she held the door for him. He said with holding the door for her, he'd have done it regardless and she had a choice whether to enter or not. It's not like he raced out and grabbed her wheelchair's handles and shoved her in the elevator - that would've been innapropriate. Is that an example of good help, in your opinion?
Posted by: Ettina | January 19, 2006 06:05 PM
I'd say that's an excellent example of good help. All the disabled want, or SHOULD want, is a level playing field. If you show me a courtesy that you would extend to anyone else, it's a level playing field. If you don't act surprised when I show you the same courtesy, it's DEFINITELY a level playing field. Tell your dad thank you for me too!
Posted by: Dee | January 20, 2006 05:45 PM
OK. 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 rhe lift. Gotta love those cell phones! I hope it was worth the $50 it cost him. I came home and printed off a hundred stickers for windshields that say
"Stupidity is not a handicap!
Park somewhere else!"
Posted by: Dee | January 21, 2006 08:56 PM
Oh, the stories I could tell:
There was the woman who saw me come out of the disability-accessable stall in the ladies room who, upon seeing no wheelchair, braces or crutches, (as I do not have, given that I have an un-accessorized, non-visible mobility disability) grabbed me and hauled me out, yelling for security and scolding me about using facilities meant for 'those people'. Just because I don't 'look disabled' doesn't mean that I'm not -- and disabled or no, it is unacceptable to physically assault another person in the restroom.
There was also one professor with whom I work who, upon learning of my hearing problems, got all squishily, pityingly "sympathetic" and began to speak v e r y s l o w l y, while using exceedingly simple words. Did I mention that I need two seperate post-graduate degrees to do my job and that I got both of them without this kind of dumbass "help"? And that more educated than he is? Yeah.
Another professor (who knows about me because the faculty have nothing to do but gossip) told me how wonderful he thought it was that 'people like me' were 'brave enough' to hold down full time jobs. Granted, jostling for parking every morning on campus can be kind of hairy, but that is really the extent of my 'bravery'.
The list goes on. It is often funny (in a sick kind of way) when it isn't so demoralizing.
Posted by: Heather | January 25, 2006 11:37 PM
Thanks for all these stories. I'm not sure why it helps, but it does. My grandson who was permanently disabled by the obstretician overseeing his birth was being pushed in his wheelchair when he was about five years old, by his mom, as they left the grocery store and headed for their car. A man drove slowly by, stopped, rolled down his window and yelled, "What did you do to him?" When my daughter, shocked, declined to answer but simply moved on, he yelled again, "I got a right to my questions!" Well, no, he doesn't have a right to any questions of a personal nature (not to mention something insulting as that). I am disturbed by so many people with disabilities defending able-bodied people's intrusive questions. Even children can be taught that it's an invasion of privacy to ask personal questions. They don't need to know why a wheelchair is needed. They don't need to know what happened. These kinds of questions are just more of the day-to-day hurdles one must jump, and they hurt.
Posted by: Irene Culver | February 7, 2006 06:43 AM
If children ask nicely, particularly young children, I don't have a problem with it. Small children have an honesty that I, for one, appreciate. Then again, I enjoy kids LOL. Again, I think if you answer a small child's questions politely, and perhaps even chat with them for a moment, you are showing them that you are a person just like every other person they know. You just get around differently, or do SOMETHING differently. They're not asking to hurt you. They're asking because they don't understand. When they do understand because you've gently explained it to them, you become just another friendly person....not a person with a disability.
Posted by: Dee Wheat | February 10, 2006 06:14 PM
As a "mixed" couple - Bruce is a wheelchair user and I have an invisible disability, we have a million stories. Our favorite story, however, was a day when we were out with our family (we have 7 children so it is alway quite a show when we go out!) at an open air mall. There were signs everywhere about "no pets." Bruce's service dog, Cody the Wonder Dog, was accompanying Bruce that day. A gardener and apparently defender of the "no pets" rule saw us and chased us down yelling "is that a blind dog?" My husband, wearing his dark sunglasses, kept going and yelled back "yes, that's why he is on a leash!" Of course, as the able-bodied spouse, she grabbed me and I got to explain to her what a service dog was!
Then, of course, there was the time that Bruce and I went shopping. I parked in the van accessible space and started around the other side of the car to put the lift down for Bruce's wheelchair. A do-gooder ran up to me and started screaming at me "you don't look disabled!" I tried to point into the car but he was too busy screaming at me to care . . . sometimes it is "degradation by association."
Thanks for the great blog - nice to know stupidity is not limited to our part of the planet.
Posted by: Bruce Goguen and Robin Bolduc | February 15, 2006 02:13 AM
I am a person born with various congenital physical disabilities and my child has autism and mental retardation. Me and my child both have experienced "little acts of degradation".
Here is one of the personal experiences that I have had: One time me and my child was meeting a famous person. One of the men that was helping to control and direct the line of people had the audacity to say "Here is a couple of Special Persons" when he was introducing us both to the famous person. The man NEVER did introduce any other persons who were also waiting in line as "Special Persons" to the famous person!
And to complicate matters even worse, the man also treated me and my child as if we were invisible to him.
The man who introduced us to the famous person did NOT personally know us at all. I highly resented the fact that the man had called us a couple of "Special People" and it me feel like that me and my child were not equal to the man as a person. I also highly resented the fact that the man also treated me and my child as if we were both invisible to him.
The way I see it, the man who introduced us to the famous person should take a Disabilities Sensitivity Etiquette Course and how to interact with people with disabilities and what and what not to say about people with disabilities.
Oh the stupidity and ignorance of mainstream society when they make comments about people with disabilities and how they treat people with disabilities!
The way I see it, the entire mainstream society should be required to take a Disabilities Sensitivity Etiquette Course and how to interact with people with disabilities and what and what not to say about people with disabilities.
It personally hurts to experience "little acts of degradation". But I keep reminding myself that every time I do experience little acts of degradation, it gives me an opportunity to teach and educate persons about being a person with disabilities and that I am really not all that different from them but I need to do some of the same things differently that they might do.
By teaching and educating persons who commits little acts of degradation is an opportunity for me to try change people's misperceptions and people's attitudes towards people with disabilities.
Posted by: PRCA | February 20, 2006 03:13 PM
It has been really heartening to read all of the stories you all have. This storytelling has made it very clear that our community, people with disabilities, are still facing discrimination on a daily basis.
Based on what I have read here, it makes me proud to be a member of our community and know how strong all of you are, even after you have had to face the degrading actions and statements from those in our communities who have no concept of our lives and our experiences as persons with disabilities. Quite often, they don't even seem to care.
I hope that you won't give up but will continue to not accept the kinds of discrimination you have had to face on a daily basis. Knowing you are out there demanding that people treat you with respect and honor your civil rights somehow makes the "battle" a little easier.
Thank you.
Posted by: Richard Skaff | March 1, 2006 11:55 PM
I have to admit either through cultural unawareness or some other shortcoming I don't see these "little acts of degredation " on a daily or even weekly basis. They do occur, to myself as well as my son. He's six, and has several disorders. He is bi- polar, ADHD (which until his 5th year I believed was a crock. I'm still on the fence now)PDD, and has a sensory dysfunction which causes him to get extremely overstimulated in places such as restaurants, where there is lots of stimuli. He begins to bounce up and down, make humming or hooing noises (LOUDLY) and sometimes becomes downright abusive to himself. This is, thankfully, a rare occation. We have time limits on outtings. I am mentally ill, and a large woman. You can imagine the stares at the all-you- can eat buffet! I am also a caregiver of children with different abilities (AKA disabled). I hope I, nor they, EVER have to face the predjudice you see everyday. Education is the key.
Posted by: Valerie | March 3, 2006 12:31 PM
>
Not quite. The key is *enforcement* of disability rights - including right to non-discrimination and level play field.
Also, why does society seem to insist that the primary purpose of disabled people's lives is "educating the public"?
A while ago, I took part of an interesting discussion on this issue. On a non-disabled public forum, someone complained about their wheelchair-using family member attracting unwanted attention while going out. Among other responses to his/her post, someone who called herself "a medical professional working with disabilities" wrote:
>
My response to her:
It is often assumed that people with visible (and invisible) disabilities exist almost solely for "educating the public" and are sort of breathing, moving "learning materials" on public display.
As a result, they get asked very personal, often intrusive, sometimes offensive questions that those without visible disabilities never have to face. Disabled people face questions from total strangers including, but not limited to, "Do you have sex?", "Do you want to be normal?", "Are you toilet-trained?", "I know a kid like you, he's also mentally retarded" and so on (I kid you not, those are real words said to real people by strangers in public places, in front of other strangers). Why in the world do they have to be "totally open and honest" with every stranger who feels free to just walk up and ask things like this at a supermarket or at a restaurant?
If a person with disability is out in public, no matter how honestly curious you are, please do NOT assume that they went out solely for "educating people about their disability".
They also have boundaries just like everybody else, which need to be respected.
They are not obligated to "educate" everyone in sight, they do not go out solely to satisfy strangers' curiosity, and you are not entitled to violating people's privacy just because they are disabled and you are curious.
If you want to find out more about a particular medical condition, consider contacting an appropriate association and requesting their educational materials or speaking to their volunteers. >>
And here's a response I got from another poster:
THANK YOU!!!
I have NF - neurofibromatosis (www.nf.org) I am NOT on display for anybody's education. It causes some disfigurement in my case. Other cases are different. I've had some incredibly stupid people ask very rude questions, like "What's it like going through life being ugly?" I looked right at that woman and said "I don't know, you tell me." I've had other more personal questions asked about my sex life.
I had some missionaries come to my door once and right away they started going on and on about how they've seen god perform miracles, they've seen god cure people, they've seen with their own eyes people confined to wheelchairs get up and walk blah blah blah. They kept going on and on and ON about how god can cure anybody from anything, god has cured all kinds of diseases, they were convinced, and they knew god could cure *me.* I looked right at them and said "What makes you think I have a disease?"
I went to a doctor once about surgery. He went on and on about only removing *one* tumor because insurance wouldn't cover the cost and he had is staff to pay, and why don't I just become an educator about it?"
I told him if it was his face, or if a member of his family had this, he'd make sure that they had every advantage they could get, and I bet he'd turn the world upside down to try to ensure they have that 'quality of life' we're all entitled to and wouldn't be condescending to them with the 'go become an educator' line of cr@p.
I found another doctor who did three surgeries for me. He completely changed my look and I'm forever grateful to him. Also, he worded the forms in such a way that insurance DID cover most of the costs, and he took care of the rest for me, out of his own pocket. All other doctors said it was plastic surgery and my doctor said it was 'reconstructive surgery to change abnormal disfigurements.' No, I wasn't a monster before, just had some bumps on my face.
I will not live my life in a cave to protect others from having to look at something that isn't television-perfect. Television ain't life. Buy a vowel. If they don't like it, they don't have to look.
Nobody is perfect. We all have something wrong, some of us it's on the outside, some of us it's on the inside. I'd rather mine were on the outside.
g******** >>>
I couldn't have said it any better than s/he did.
Posted by: L.K. | March 5, 2006 01:16 AM
To L.K.
I want to let you know that I see your point about why society seem to think that the primary purpose of disabled people's lives is "educating the public".
I do completely agree with you 100% that we should NOT be on public display in order to "educate" and satisfy the public's curiosity about our Disabilities.
But there are some things that the various uninformed members of the General Mainstream Society should know about like having proper sensitivity (proper etiquette) about and towards people with Disabilities including in how to act and what and what not to say around people with Disabilities.
For example: Some people say that people with Disabilities are "Special People" or that people with Muscular Dystrophy are "Jerry's Kid's".
Various uninformed members of the Mainstream Society needs to know that various people with Disabilities and that various people with Muscular Dystrophy resent both phrases of "Special People" and "Jerry's Kid's". I know that NOT all of the General Mainstream Society knows that various people with Disabilities and that various people with Muscular Dystrophy resent both phrases of "Special People" and "Jerry's Kid's".
If we do NOT tell various uninformed members of the General Mainstream Society on why we resent both phrases of "Special People" and "Jerry's Kid's", then the various uninformed members of the General Mainstream Society will NOT know our actual feelings about both phrases.
In my personal situation, I do NOT mind educating people on WHAT caused my various congenital physical disabilities due to the fact that I want to raise public awareness and medical awareness on WHAT caused my various congenital physical disabilities which IS due to an EXTREMELY RARE genetic syndrome. 99% of the General Mainstream Society does NOT know about the EXTREMELY RARE genetic syndrome that I have. Even a lot of the professional medical community does not know that much about my EXTREMELY RARE genetic syndrome that I have.
The more public awareness and the more medical awareness that I raise about my EXTREMELY RARE genetic syndrome, means that other people like myself can be directed to the proper support groups and receive needed information and needed help.
To be diagnosed with an EXTREMELY RARE genetic syndrome and to be told that you will NEVER meet another person that has the same thing that you have, you feel COMPLETELY ALONE on earth!
By me educating people on WHAT caused my various congenital physical disabilities and trying to raise public awareness and medical awareness on WHAT caused my various congenital physical disabilities which IS due to an EXTREMELY RARE genetic syndrome, means that other people like myself will NEVER need to feel COMPLETELY ALONE on earth because they will KNOW that there ARE other people like themselves who ARE able to relate to them AND knowing that they CAN receive needed information and needed help. I do NOT want other people who also has the SAME EXTREMELY RARE genetic syndrome to feel COMPLETELY ALONE on earth.
These are some of the reasons why I do NOT mind educating people on WHAT caused my various congenital physical disabilities and me raising public awareness and medical awareness on WHAT caused my various congenital physical disabilities.
Posted by: PRCA | March 7, 2006 01:29 AM
Little acts of degradation and exclusion? How about this:
Computers aren't accessible for lots of us with repetitive strain injuries. I can type and mouse with fairly minimal pain these days -- that's how I am able to find your article at all -- but lots of us can't. Does the ragged edge mean to be telling us we aren't welcome?Thanks for this excellent article. I'm going to print it out for my group and see if we can find an ally to help get people's responses posted on this site. Anyone near san francisco want to help?
Lee Worden
San Francisco RSI Support Group
worden@berkeley.edu
Posted by: Lee Worden | October 16, 2006 06:21 PM