The Disability Rag March/April 1992. Volume 13, Number 1 (On-Line Edition of America's Hard News Disability Magazine) Publisher: The Avocado Press, Inc. Editor: Mary Johnson Managing Editor: Sharon Kutz Mellem Fiction/Poetry Editor: Anne Finger Recording: Tom Denston Large Print: Ramona Shaw Circulation: Ann Johnson Administrative Support: Mary Anne Ostertag Copyright 1992 by The Avocado Press, Inc (I S S N 0749-9596) The Disability Rag cannot accept responsibility for unsolicited materials. Materials accepted for publication cannot be returned unless accompanied by a stamped, self-addressed envelope. The Rag reserves the right to edit all materials. Send submissions and letters to the editor to our editorial office. Direct subscriptions and circulation inquiries to our circulation office. Editorial Office: The Disability Rag, Box 145, Louisville, Kentucky 40201, United States of America. (502) 459-5343. Circulation and Subscription Office: The Disability Rag, 1962 Roanoke, Louisville, Kentucky 40205, United States of America. Indexed in the Alternative Press Index (Box 33190, Baltimore, Maryland, 21218-0401, United States of America.) Available on Microfilm in the Alternative Press Collection of University Microfilms, 300 North Zeeb Road, Ann Arbor, Michigan, 48106, United States of America. *************** Computer On-Line Edition: While the Disability Rag reserves rights to hardcopy print media, computer users are invited to spread The Disabiilty Rag throughout Cyberspace. Please do repost and retransmit The Disability Rag. This I understand I was told when I called The Disability Rag. Bill Scarborough System Operator, The Yellow Dream Machine B B S (512) 451-3222 300/1200/2400 N/8/1 *************** Table of Contents <01> Understanding Access - In this issue, the Disability Rag provides a primer to use with public accommodations to talk about issues related to access. <02> What? Department <03> Beyond Access in New York City; There's always a BUT By Mary Johnson <04> Reading Department By Lisa Blumberg <05> Views of Ourselves Department: In Search of the Politically Correct Disability By Sharon Kutz Mellem <06> Thoughts on Thinking Differently By Tanis Doe <07> The Hierarchy of Acceptance By Carol Marfisi <08> Disability Rights and Gay Rights Karen Thompson Talks About the Case That Never Should Have Had to Happen <09> Excavation Poems by Kenny Fries <10> Metaphors We Could Do Without <11> Give'Em a Break! <12> Letters to the Editor <13> We Wish We Wouldn't See . . . *************** Understanding Access The following articles have been written to make the concepts of "universal design" easy to understand for owners of public accommodations. Why not make copies of them and hand them out at seminars? Following the concepts in these articles can make the legal access requirements of the Americans with Disabilities Act easy to follow. Easy, independent access "Our nation's proper goals regarding individuals with disabilities," says the Americans with Disabilities Act, "are to ensure . . . full participation [and] independent living." The lack of independence is something that frustrates most people with disabilities. Too many aspects of "access" today, though they may accomplish the task of letting people get into your place and get served, still don't allow people to do it independently. In their effort to provide businesses with a great amount of flexibility, Congress didn't require measures that were costly or unduly burdensome. Congress allows, for example, for a waiter to read a blind diner a menu rather than providing a large-print or braille menu. While few people would object to being read a menu, a little thinking about this procedure makes you realize that it's less independent a method for the diner. It makes the diner "dependent" on someone else. This can't be helped in many cases. Nevertheless, when possible, your goal -- much appreciated by disabled patrons -- is to allow independent access. If you can afford the $5 or $6 to run to a quick print place and have your menu enlarged by photocopier to a large- print size, the solution offers more independence for those diners who can take advantage of this access option. Stan Greenberg, director of the Westside Center for Independent Living in Los Angeles, explainst wo ways that a blind person like he is can grocery shop: "I can go up to the courtesy desk and ask for a clerk to accompany me." "In the best of all possible worlds," though, he points out that he'd be able to do this independently. Shelves would be equipped with data codes that a hand-held scaning device could "read," telling the customer via electonic voice what item the shelf contained and the price." The technology to do this, of course, is available; it's the same technology used at the check-out counter; the only thing missing is the hand-held scanner for the blind person. Some stores will be moving to this technology in the next few years to allow blind customers the same degree of independence sighted shoppers have -- to dawdle in the aisles, to comparison shop, to go back and forth in the store. Now most blind people use a sighted companion. Under the ADA, a store should provide this. What Greenberg wants, he says, is "a clerk who will show me where stuff is, who will read the labels, who will stand by me and wait and not hurry me and not make decisions for me." Greenberg, who wants the same degree of independence as a sighted shopper, says, "Most of the time when I ask the store, they do it, but I have to wait for long periods of time. I've been asked to come back when they're not busy, when a non-disabled shopper can shop whenever they want." What Greenberg is after is independence. Providing independence should be your goal in accommodating people with disabilities. "Many places have cash registers that have the ability to speak prices aloud; that technology came along nearly a decade ago. "But many stores have turned off the vocal mechanism on their cash registers." The cash register that "talks"is an example of universal design: it works for everyone. Too bad businesses don't use more of them! Don't think 'Special' "Special" means separate and different. It means "segregated." People with disabilities don't like coming in the back door by the loading dock or having to use separate restrooms and water fountains any more than blacks did back in the days when that was the law of the land. In new construction, integration is pretty much required today. But we want to suggest some more ideas, for your current building: % Make your main entrance usable to people in wheelchairs by a ramp. If you think the price your concrete contractor charges is high, talk to a carpenter about an attractive deck-style wooden ramp. The statement you make by opening your main door to everyone will go a long way toward increasing your business among disabled people in your community. Worried about space for a ramp? There's no law that says you need steps, too. Put that ramp over those steps! % Are your men's and women's restrooms next to each other, both too tiny for someone in a wheelchair? If so, turn them into one larger restroom everyone can use. Don't install an additional, "special" lower public phone for disabled people. Move your regular phone down, and add a narrow, 6-inch bench for tall people to sit down when they dial -- one that doesn't obstruct someone in a wheelchair from getting up to the phone. Buy a $200 TDD machine; if you can't install it in the phone booth; put an obvious sign on the phone to tell a deaf person where to ask for it (at the cashier's counter, etc.) Remember: think in terms of making your place easy to use for everyone, whether they see, hear or walk -- or not. In general, avoid "special" items like automatic door openers designed "for the handicapped" and instead buy the industry standard items that can work for everyone. You can save money, too, by avoiding things like the "special" lavatory sinks. Do purchase sinks that people in wheelchairs can get up to and use easily; do purchase lever-type faucets. But you don't have to pay more from medical suppliers for "special" plumbing. Any plumbing supply place can show you a range of items that work. Other ways to avoid special is to avoid the kinds of changes in level that are so popular in trendy clothing boutiques and bar-cum- restaurants. New buildings with level changes like this will have to provide access to all these areas via ramps. If you must have changes in level, forget about steps altogether and just use ramps. Going Beyond Minimums -- to Optimums 1. Put everything at optimal wheelchair-users' reach -- at the level they can reach it even if they don't have much arm movement. We suggest an area between 35 and 42 inches from the floor. 2. Give wheelchair users a 60-inch by 60-inch space to maneuver in. 3. Put in automatic doors -- or lighten your doors so that it takes no more than 5 pounds of force to open them. 4. Make doorways 36 inches wide. These examples are just the start of ways you can think of to make your place work for everyone. According to the Accessibility Guidelines of the ADA, "the maximum high forward reach allowed is 48 inches . . .[and] the minimum low forward reach is 15 inches." Here's something to do that's even better -- an "optimum." Install everything like paper towel dispensers, light switches, phones -- that is, the "business part" of any equipment customers or disabled employees are likely to use -- at a point where somebody who can't move any part of their body very easily can still reach it. That turns out to be anywhere from about 35 to 42 inches off the floor -- the height that your arm would be at "naturally" if you were sitting in a wheelchair with your arm resting on the armrest of the chair. That's an optimum reach range. It's a point that everyone can reach -- even children. The Principle of "The Most Disabled User" Don't be surprised if a disabled person tells you "you don't have to do that much." She may be right -- when it comes to her alone. Most people with disabilities have for so long had to be grateful for the very tiniest bit of access that many of us have learned to think in very personal terms, and the most limited ones, too. If I have a tiny wheelchair and can get through a 28-inch doorway, I may tell you that your 28-inch doors are "fine" and that you don't have to do more. But that advice, even if offered in good faith, would still be wrong. In the same way, many wheelchair "jocks" and people with powerful, motorized wheelchairs do not need ramps with a 1:12 slope (sloping out 12 inches for every inch of height it needs to span). But many people cannot use ramps independently with a slope steeper than that -- though the ones you talk to may well be able to. (The best solution in new construction, of course, is to avoid changes in level altogether -- make entrances flat!) When someone tells you what they need for access, you might find it useful to ask them: "Will this work best for people even more disabled than you? If I make it work for the most disabled user, will it still work for you?" This principle doesn't always work. Even if you make your place accessible to someone who seems the "most disabled" in terms of deafness -- someone who is totally deaf -- you won't necessarily ensure access for everyone who's just hard-of-hearing. While providing a TDD may work; people who are hard of hearing may need phones with built-in amplifiers instead. Nobody they know uses a TDD; giving them one would be useless since they'd have no one to call. In the same way, a sign language interpreter can't provide "access" for a deaf person who doesn't know sign language. Still, when providing changes in your structure, the principle is one that it's wise to keep in mind. Install a phone in a way that the greatest number of people can use it. Put in the kind of door that the greatest number of people can get through independently. Add a door handle everybody can manipulate. Things like automatic doors make life easier for everyone. If you can offer automatic doors -- not special ones but the regular kind found in groceries and hotel parking lot entrances -- people with disabilities will love you for it. "Almost" Isn't Good Enough If a person's wheelchair is 30 inches wide, it won't go through a 29- inch door. It just won't. "We tried to make it accessible!" said one frustrated restaurant owner we know when a patron in a 31-inch wheelchair complained he couldn't use the restroom. The owner had remodeled his restroom for access. "It's almost wide enough!" moaned the frustrated owner. But "almost" wasn't good enough. The restroom was as inaccessible to this patron as if no remodeling had been done at all. This owner had not done his remodeling in compliance with the building code. He had it done before the ADA. His state building code's access provisions called for wider doors, but he did the job himself and he wasn't familiar with the codes. He did his best, but it didn't help this patron who had to use the toilet. A even sadder footnote: The wheelchair-using diner had selected this restroom because a friend had told him that the restaurant had recently remodeled its restroom for access! When making accommodations for disabled patrons, you should work to provide universal access. Another place that "almost" isn't good enough is with ramps and curb cuts. If there's a lip at the bottom, some people won't be able to use it at all by themselves. For some people, that 1-inch lip might as well be a foot-high curb, if they're going to use it independently. When you make your "readily achievable" changes, remember: Go beyond "almost." A word to the wise Operators of public accommodations must comply with the ADA Accessibility Guidelines when remodeling or building new structures. Doing it yourself is no excuse for not knowing the technical requirements. Nor can you use the excuse that a disabled person gave you incorrect advice, and expect to be let off the hook if somebody later comes along and sues you because you're not accessible. The Case for Automatic Doors One of the most frustrating aspects of being disabled is having to wait for someone to hold open a door for you. "Automatic doors give me an opportunity to go in and out at my own discretion," says disability activist Debbie McKeen. "Otherwise I have to sit and wait, and ask someone, 'please hold the door for me?' and then they do, and so I smile, and we all have to make little jokes about running over toes and so on, and I thank them -- but sometimes I'd just like to not have to be dependent and just go in and out of a mall or a store like everyone else and not have to engage a stranger for help." Automatic doors give us all the same kind of independence. They truly make us equal. Automatic doors make life easier for everyone. They're routine in groceries and at hotel baggage loading areas -- to make life easier for grocery shoppers and bellhops. Why then, say an increasing number of people with disabilities, can't automatic doors become routine? "How many new malls use heavy glass doors?" asks Michael Collins of the Washington Governor's Committee on Employment of Persons with Disabilities. "Yet you go to your local grocery, and you can get in and out. The convenience of automatic doors has been proven worldwide," he insists. "Yet designers and architects keep using heavy glass doors because they think they're more 'aesthetic.' If you can't get into a place, it makes no difference how 'aesthetic' it is -- you can't use the services inside anyway." "You don't have to be disabled to appreciate automatic doors," says Barbara Judy of the Job Accommodation Network. Shoppers with packages, parents with baby strollers, business executives with briefcases and tubes of sales displays, deliverypersons like the people from UPS -- we all benefit from automatic doors. In Kyoto and Tokyo, Japan, automatic doors are a common feature of restaurants, convenience stores and even MacDonald's. It's time they became universal. The Americans with Disabilities Act doesn't require an automatic door. But when you remodel your entrance, plan a new addition or build a new place, why not make an automatic door part of your building plans anyway? Are they expensive? They're not too expensive for most groceries. You can automate some doors for well under a thousand dollars. Even low-budget independent living centers serving people with disabilities find a way to pay for them. Lorelee Stewart, who directs the Independent Living Center in Lynn, Massachusetts, tells us that, although her building landlord wouldn't pay for the automatic door opener they purchased, every other tenant in the building has found the door so useful that they have voluntarily agreed to share the minimal maintenance costs of the door! When you do plan for an automatic door, apply the principles of universal design: Don't get a "special" door opener. Don't opt for a door that requires the user to push a "special" button to activate the door. Remember: anyone disabled enough to need an automatic door may also be too disabled to independently push such a button. A Universal Toilet Room Ron Mace has a design he promotes for what he calls a "Universal Toilet Room." It's the ideal for new construction. It involves more than one accessible toilet stall -- each one fitted a little bit differently -- "because one toilet height is never going to be right for everyone." Accessibility standards currently call for a range of 17 to 19 inches. The plan, says Mace, is to create a very large stall at the end of the restroom -- all across the end. This one should have a regular toilet seat in it, 17 inches tall, which is still a standard height. This stall must be at least the 60-inch by 60-inch space we talked about, above. Next to that, put in a stall that's 3 feet wide. In it put a toilet that's 19 inches tall. People who use walkers, have arthritis, bad backs or stiff joints and have trouble getting up and down from seats will find that toilet height easier. These folks often use canes and walkers or crutches, says Mace. The other stalls can be narrower and can have standard-height toilets. "That way you've got practically everyone covered," says Mace. Mace's "Universal Toilet Room" design is close to what's required by the ADA Accessibility Guidelines in building new restrooms of 6 or more stalls. We suggest you use it in any restroom that has more than one stall. Many women routinely choose the larger, accessible stall in public restrooms -- even women who have no disabilities. It's because they're roomier -- they provide room to hang coat without having them falling into the toilet; they're roomy enough to give women shoppers room to put down purses and packages. They're even roomy enough to park a babystroller. Bigger is definitely better. Universal Design "Universal design" is a very simple concept: it means designing buildings and products so they can be used by everyone. Common sense? You'd think so. But for such a common-sense idea, it's taken surprisingly long to catch on. Designers and architects have used the model of a "6-foot able- bodied young male" as the standard for designing everything from buildings to automobiles to computer keyboards, says Ronald L. Mace, a Fellow of the American Institute of Architects and President of Barrier-Free Environments, Inc. in Raleigh, N.C. Mace, who uses a wheelchair, has been working for decades to have the design industry realize that something's wrong with this idea. "It's no wonder that what we need in this society doesn't fit that model. That standard is in fact a minority itself, and it is going to be more of a minority still as the population ages." Or, as disability consultant June Kailes puts it, "Most people don't fit that mold -- and if they do they're not there for long." Just watch the ads for things like arthritis medicine, sore back medicine, aching joints medicine, she suggests. Doesn't that tell us something? Mace likes to point out that almost everyone, when you stop and think about it, has some sort of a minor disability -- and some of our closest friends and relatives actually are severely disabled -- even though we don't think of it that way. When Mace works with businessess who are remodeling or building new buildings with access in mind, he says "they are astounded to have it brought home to them how many people have disabilities." The "43-million" statistic so often mentioned doesn't really mean anything, he says, "until I point out to them that the Arthritis Foundation, for example, has 35 million members. That makes them sit up. Sometimes they'll say, 'I have arthritis myself.' But they don't think about it, because they can still function fairly well. "I try to bring home to them things they can't deny: We are all technically part of the disability community" that the Americans with Disabilities Act was designed to help, says Mace. "We're only a step away from it at any time." June Kailes adds these facts to support Mace's point: "Most people have at least one family member with a disability," she says. There's an 80 percent change that you, in an average life span, will experience some disability -- a 95 percent chance, she says, that you'll have a temporary mobility impairment yourself: "a broken leg, sprained ankle, twisted knee, painful back." "And most people, if they live long enough, will age into disability." A U.S. Census survey in the mid 1980s pointed out that one in every 5 Americans has some trouble hearing, seeing or walking or moving in other ways. Kailes says that "one person out of 10 over the age of 15 has difficulty climbing steps, walking more than 1,000 feet or carrying a bag of groceries." She also reminds us that "baby boomers are moving into middle age and beyond and are starting to experience increased incidence of disability." Finally, she makes this not-so-startling assertion: "People with disabilities and who are aging will constitute the majority of the population within the next 30 years." It's clear from these statistics, she says, that "The need for 'barrier-free' or universal design is increasing today because of America's demographics." So doesn't it make sense to make buildings work for the greatest number of us, rather than for a physical standard that's really in the minority? That's what "universal design" is about. It goes beyond "accessible design" because it includes everyone. "Some architects, designers and developers view various 'access regulations' as out of proportion to the need. They say that these regulations mandate designing for the 'worst situation.' " But, Kailes insists, "Universal design is in fact designing for the best situation -- because it better accommodates everyone -- by meeting the needs of a changing population." Current building codes calling for access for disabled people, (including the ADA's Accessibility Guidelines which come with the Department of Justice rules) are limited by the concept of 'minimums' " says Mace. They say, "at least this high, at least this wide". Another way of saying this is to say they're legal minimums. They don't tell us what would work best for everyone. Though nothing in any of these building access codes say a builder can't go beyond the minimum (for example, making a door a few inches wider than the minimum required), seeing an actual number in the code -- even when it's a minimum -- often makes a builder simply put the lightswitch, the door handle, or whatever, right at that height. This often isn't the best height for everyone, but is merely a minimum (or maximum) requirement. Often a few more inches will help millions more people. This approach taken by building codes has, says Mace, "unfortunately reinforced the idea of just a few accessible features in a few places -- just one accessible entrance, just one accessible restroom. Instead, they could simply be making doorways and restrooms universally accessible." The "minimum" approach, Mace says, has given us some access, but nowhere near universal access". Access advocates like Mace have "been pushing up those minimums for 25 years now, he says. Now, though, he points out, "we have a nondiscrimination law -- Americans with Disabilities Act -- that says its discriminatory to maintain property that people cannot use. Now it becomes a moral issue for design firms, product designers and the industry." "Maximums" and "minimums" have had a tragic side effect: Some builders in a hurry read their codes too quickly, and don't think. They see that "the maximum high forward reach allowed is 48 inches," and the "48 inches" part sticks in their mind. They forget that this is a maximum. They install the lightswitch at 48 inches. If you don't have good use of your arm, you can't reach that when you're sitting in a wheelchair. It's totally inaccessible at that height to people who don't have good use of their arms. The code doesn't require it be that high, of course. The code requires that the switch be no higher than that. What we need is an optimum. The optimum is anywhere from 35 to 42 inches. When making "readily achievable" changes, businesses are allowed some leeway under the ADA . Alterations and new construction, however, must follow the ADA Accessibility Guidelines. Businesses can go beyond them to optimums (see box). "In new construction there shouldn't be any problem," Mace reminds us. "Renovation is another matter. That's why the guidelines for the law are flexible. They want you to do what's do-able. The problem isn't so much the cost but the not knowing. People are afraid of the unknown. I've had companies say to me, 'we want to do it right. We don't mind paying for it, but we want to do it right the first time and not have someone come back later and say we did it wrong and now we have to redo it,' " says Mace. Kailes gives sound reasons as to why universal design works so nicely. "Wide doors and hallways make moving furniture easier. Adjustable counters and storage spaces are not only helpful to wheelchair users but also benefit people who prefer to sit" while doing things like chopping vegetables or filing. Developers often complain that ramps take up valuable real estate; but Kailes points out that ramps aren't necessary at all in new construction if entrances are merely placed at grade level. "Stairs are not required, but ramps are," she says, referring to the law. The point is you don't need both, she says. "It is steps that are unnecesary, hazardous and expensive." Kailes has also heard builders complain that bathrooms and kitchens that can easily accommodate someone in a wheelchair use up too much square footage. "The extra space makes a great place for storage and work islands," she says, "that can easily be removed when more space is needed." Kailes says owners often resist universal design because they think it will look "special" or impose strict restraints on a designer's creative process. "Some builders equate 'access' with 'ugly' and with having to respond to a small but loud and fanatical group of people with disabilities." Instead, she says, look at it this way: "Think about universal design on a personal level. Will your home or shop or store be adaptable for a lifetime" of work there for you and your employees? Will you be able to take advantage of any customer who wants your service?" When businesses follow universal design principles, it will. Book available This and the following articles on design are taken from "People With Disabilities Explain It All For You: Your Guide to the Public Accommodations Requirements of the Americans with Disabilities Act," just published by the Advocado Press. Written for operators of public accommodations, this easy-to-follow guide explains the thinking behind access and accommodation. It can be a useful tool for helping operators of public accommodations understand why they must obey the law. People With Disabilities Explain It All For You" is available for $15.95 from The Advocado Press, 1962 Roanoke, Louisville, KY 40205. Orders must be prepaid. To inquire about bulk orders, call 502/459-5343. What? Department Stranger than paradise? Film director John Sayles told the Washington Post last October that his next project would be about the "strange" relationship between a woman who's paralyzed and her caretaker. What's amazing is that they didn't cover it "Yet the most touching [ovation] was for a beautiful young lady who struggled for six years to achieve her degree following a tragic car accident that left her paralyzed from the waist down." David C. Rosenberg in a letter to the Washington Post criticizing their failure to cover this and other "amazing" (as Rosenberg put it) stories from a Georgetown University graduation ceremony. I'm speaking as fast as I can Members of the Texas Board of Mental Health and Mental Retardation cut off witness Victor Ramirez when his alloted three minutes expired, reports "News of The Weird." Ramirez had prepared a speech on the need for more community services but could not finish it in time because he has cerebral palsy and speaks very slowly, according to the news service. If you've lost an arm, you must be courageous "In November, America wept for Ana Rose Rodriguez. This tiny infant was born with only one arm. The other had been torn off by an abortionist. Through tears we tried to imagine the unspeakable pain that this helpless, innocent aby endured and must yet endure. We marveled at her courage . . . " From a letter to the editor to the Middletown (N.Y.) Times Herald Record from William Kellett, commenting on the story of a botched abortion. Literature staggers on "The aesthetic keystone of "The Wrecking Yard" is "Washman," a long story about a crippled hunchback killer who shoots down a man in a gunfight over a mule . . . " Douglas Glover's review of Pinkley Benedict's latest short story collection, The Wrecking Yard, reviewed in the Chicago Tribune January 26. Shortchanged? "A dwarf who made his living being thrown around bars and discotheques is suing the French government for depriving him of a livelihood," reports the Associated Press. Manuel Wackenheim is seeking compensation for wages lost when France's Interior Minister ordered a halt to the sport of dwarf-tossing, calling it an "intolerable attack on human dignity. " Even the New York Times! "The marchers were mostly Alabama blacks but they also included Northern nuns, students, rabbis, even a one-legged Michigan man on crutches." New York Times editorial writer, showing amazement that a "one-legged man" marched with Dr. Martin Luther King in 1965, in an editorial on Dr. King in the January 20 edition of the paper. Cliche alert no. 783 "The slate of reform candidates is urging regional Teamster officials to turn a deaf ear to their rivals." Middletown (N.Y.) Times Herald Record reporter Wayne A. Hall, in a story on local politics in the January 17 edition. Beyond Access In New York City There's always a BUT by Mary Johnson Remember when Mother Theresa made news in New York City? The issue was access -- for disabled people. In classic good-guys, bad- guys action, Mother Theresa's Missionary Sisters of Charity were the Good Guys. The Bad Guys? The Mayor's Office for People with Disabilities. They insisted that the order's new shelters have elevators so people in wheelchairs could get in, too Mother Theresa's sisters rode the elevator again and again to meetings in the Mayor's office to stress the Order didn't use luxuries like elevators. They'd carry people in wheelchairs up the steps. The MOPD said that was undignified and dangerous. They were branded unreasonable. In May, more good-guys, bad-guys action: The J. M. Kaplan Fund would pay for a few high-tech streetside toilets; if they worked and weren't vandalized, streetcorners all over town would sport them, courtesy of JCDecaux of Paris. But the Bad Guys again demanded access. As The New York Times's Celia W. Dugger put it, "The issue most likely to doom the plan is access for the handicapped." "Groups representing the disabled need to see the folly of clinging to unrealistic hopes that obstruct public needs," lectured The Times. What's going on here? Does making things accessible to disabled people have to make a project grind to a halt? --- lede "The disability community in New York has been moving from 'charity' to 'change' for a long time now," says Anne Emerman, a disability activist who now heads Mayor Dinkins' Office for People with Disabilities. "And people don't understand that we're not willing to settle for charity anymore." The toilet brouhaha was the most recent example of the constant and ongoing battle to get real change to occur in access in New York City. Under a 4-year-old city law, new construction and renovation was supposed to be accessible. Now there's the Americans with Disabilities Act, too. But most who watch out for access in the city concede it's hard to know what's being built or renovated illegally. And it usually requires a pitched battle to get the simplest forms of access. **** People say access is a good idea -- in the abstract. They're so unwilling to say anything publicly against access that you have to take a disabled person's word for it when they insist that "there are very powerful people against the idea of access in New York City." But you get a sense of the kind of paternalism they must feel when you talk to developers, architects and civic leaders -- because, sooner or later in the discussion comes the "but." "We'd like to have them all accessible," said Doug Lasdon of the Legal Action Center for the Homeless, whose lawsuit last year started the toilet brouhaha. "But Decaux isn't offering that." We'd like them to be accessible, says the Kaplan Fund's Suzanne Davis. "But we have to consider the safety." Everybody's supportive. Still, nobody but disabled folk seem to believe in complete and full physical access to everything for disabled people at all times. Nobody's ashamed to say full access is going too far -- like they might if the issue were race or gender. That's because there are "good reasons" for their objections. Like . . . Cost. "You can accomplish 90 percent of access for reasonable cost," says architect Bob Marino who's involved in a Task Force convened by the city Buildings Department to work out access "problems" under city law. "But for 100 percent access, he says, "the cost is unreasonable. "The disability community wants everything completely accessible," he says, but builders "simply can't give it to them because it costs too much money." Safety. "It's not aesthetics, it's safety," the J. M. Kaplan Fund's Suzanne Davis explained, early on. What? Disabled people more mugger-prone? "That's one of the most obnoxious, patronizing reasons we hear," says Emerman. "We take risks every day in New York -- we motor out of our apartments in our motorized chairs, we ride around in our neighborhoods. We had to fight to get onto the subways, too. We live in the war zones. We live in the housing projects. We are everywhere; we take our chances along with the other 7 million people in this city." There are just a few disabled people, so not everything should be accessible. Also known as They want too much. "What we question is why it has to be 100 percent," says Real Estate Board president Steven Spinola. "We said, if the disabled community is 10 percent," (which is probably high, he adds, in an aside, because not all of them are in wheelchairs), "then what's wrong with having 10 percent or even 20 percent?" He answers his own question: "They believe that, if they wanted, they should be able to pick and choose from any apartment." "When the law was passed," says Marino, "it said every single square inch should be adaptable [for later access] -- it wasn't good enough if one bathroom was accessible." Why, he asks, do all bathrooms have to be accessible? That one gripes all of them, just like it gripes the toilet kiosk affionados. Paired sets of toilets -- one accessible, one not -- are the latest solution. "If they just use the accessible ones they'd save a bunch of money," says Disabled in Action President Frieda Zanes. "This would be funny if it weren't so tragic," says Emerman. The separate-but-equal argument would make sense to Marino. It's what Spinola uses in thinking 10 percent access in apartments ought to be enough. And it was Decaux's key argument. **** New York was introduced to the concept of full access -- none of this percentage this, percentage that stuff, but full access -- with Local Law 58, signed by Mayor Koch in August, 1987. The law, written to bring the city's building code into compliance with state laws requiring access for disabled people, is the strongest in the nation. Decades of studies show building a structure "barrier-free" costs little if any more when designed with access in mind. And so Local Law 58 allows no exceptions in new construction. Waivers were to be allowed only in renovations -- and they'd be granted, if at all, through the MOPD. This way, according to Leeds, chief author of Local Law 58, there'd be a way to ensure that anyone requesting a waiver could go over the problems and usually see there was a fairly simple way to comply. Four years later, that's starting to happen. "The truth is that its' nowhere near as horrendous as it sounds, and there are many simple and practical solutions," says Council of New York Cooperatives director Mary Ann Rothman now, who's been gradually learning about access. But that concession has been slow in coming. Though developers were aware the law was being drafted in the early 1987 and had plently of chance to review it, says Leeds (and a number had the draft in hand, he says), when it took effect in September, 1987, they acted like they'd taken a direct hit. "It took us totally by surprise," says Real Estate Board vice president Deborah Beck, one of the people Leeds says knew the bill well enough to raise several specific objections when it came before the city council in May. Developers "had not been aware of the myriad details -- particularly on the residential side," she insists. And they resented it. "We wanted a blanket waiver," admits Rothman. "And we haven't been successful at all with the Mayor's Office for People with Disabilities." So developers set about trying to get what one access activist calls "a case by case waiver," first by getting the disability community to "cave in," as one disgruntled activist puts it, to a demand that any development "in the pipeline" when the law was enacted be allowed to apply for a waiver. The Liberty View condominium development in Battery Park City didn't even have the architect on board who would draw the site's plans at the time of the law's signing. Still, developers for the site finagled a ruling from the city Building Department agreeing that the site would "qualify for an exemption," something the Building Department had no right to say, says Leeds. Without ever consulting the MOPD, the developer was blithely building the units with no access when a chance tour by Emerman of the building near completion alerted disability activists to the fact that the project was proceeding "entirely ilegally." A year of negotiations followed, but the damage was done -- many units had no access. Activists found this out only by chance, they say. How many others have gone up in blithe disregard for access is anybody's guess, since nobody monitors for violations. Developers insist they're not opposed to access, but that they shouldn't be dictated to. Certain conventions, they say, such as having "first floor" apartments up several steps so the windows won't look out directly onto the street, should be honored. So what if nobody in wheelchairs can get into any of the first floor units? It also irks developers that homeowners are "told how to use their space." "When a person is doing something for personal use, should they have to do it in a matter that's suitable for some future occupant?" asks Beck. Though she doesn't like it, Rothman understands why disabled people are hanging on "tooth and nail" to this requirement. "They have lobbied for years to have available to them what the rest of us have taken for granted. And now that they have this law they say if all the condos and co-ops have to do it eventually housing will be available to them." Zames puts it differently: "It's just that it's new. It scares them. Once people make something accessible, though, they like it." Does that end the debate? No. There's always a "but." But the law goes too far, says Spinola. "It's crazy. You've got a law that says everything you renovate has to be accessible. Even though there are steps on the outside, you have to make the inside accessible." Activists say: once you make it accessible, it's accessible forever. If you later remove the steps, the inside will already be fine. It's an argument that offers cold comfort to people like Spinola and Marino. *** Toilets are a particularly sore point. If the co-op and condo owners could have one concession, says Rothman, it would be to be allowed to keep inaccessible bathrooms. In the developer's view, evidently, New Yorkers are used to their tiny bathrooms and shouldn't have to give up living space to make them larger. Madison Square Garden renovators felt the same way a couple of years ago. Disability groups had to fight to get them to make the bathrooms in the luxury skyboxes accessible and didn't win but part of the battle; larger bathrooms in these high rollers' gamewatching rooms would cramp partying space. What they didn't say: nobody in a wheelchair's gonna be up here anyway. Getoutahere! There aren't that many people in wheelchairs. You never see anybody in a wheelchair. Why do we have to do all this stuff when nobody's going to use it? Especially with our toilets? The separate-but-equal toilet kiosk solution is in part an outcome of the "there aren't but a few disabled people" thinking. In part it stems from thinking the issue is "safety." And the thinking that access isn't that important. "Just the other day I was over at St. Paul's Chapel, over at Columbia," says Zanes, bringing home the point. "I had to go, but the only accessible toilet was locked. And the person who had the key had gone. "I had to leave the school and go find an accessible one. The one I found was a few blocks away. But then, I know the city. And I can stand up and walk a little, too. If I hadn't been able to do that, I don't know what I would have done. "[National disability activist] Judy Heumann says that we disabled people put up with things that no other minority would put up with. It's OK to do to a disabled person something you'd never to to a black, or a Hispanic, person. "But they say we're just being difficult. I say it's discrimination." First ADA Complaint filed against Empire State Building The day after the public accommodations provisions of the Americans with Disabilities Act went into effect, Frieda Zames and members of Disabled in Action of Metropolitan New York filed complaints with the U.S. Department of Justice against four major New York City public accommodations for failing to obey the Americans with Disabilities Act. Their action was believed to be the first in the nation. Among the places to feel the group's wrath was the Empire State Building, which, despite city, state and earlier federal laws, is still not accessible to people in wheelchairs. Besides the steps leading up to the Observatory, "not one of the restrooms on the 102 floors is accessible," said Zames. At the press conference/demonstration, a spokesman for the Empire State Building was quick to tell the press that they were hiring an architect to "study" ways to make the world-famous tourist attraction accessible. The promises didn't faze LaChenn, an attorney with the New York Lawyers for the Public Interest Disability Law Project, which prepared the complaints for Disabled in Action. "The law was signed 18 months ago, and the reason Congress didn't make it effective immediately was precisley so that public accommodations had time to make the necessary changes before the effective date," said LaChenn. Of the Empire State Building, she said, "they should have made those changes a long time ago." Though Disabled In Action's complaints were the first to go in, other groups around the country, including ADAPT chapters in Austin, Los Angeles, Denver and elsewhere staged protests at inaccessible sites that should have taken the 18 months to become accessible, but didn't, and promised that formal complaints to the U.S. Department of Justice would soon follow. Reading Department by Lisa Blumberg A Necessary Booklet by Lisa Blumberg Table Manners: A Guide to the Pelvic Examination for Disabled Women and Health Care Providers. by Susan Ferreyra and Katrine Hughes. San Francisco: Planned Parenthood (1660 Bush St., San Francisco, CA 94109) 16 pp. Pelvic exams are necessary for all women, but few women look forward to them. For a woman with a disability, ordinary anxiety is heightened by such immediate concerns as how she is going to get on the exam table, as well as by a sense that the doctor may not treat her as a rational adult. And a health care provider whose schooling has oriented him (or her) to assume that any "normal" gynecological patient will be nondisabled may be ignorant of the accommodations a person with a disability may need and, indeed, may wish to avoid seeing a patient with a significant disability altogether. The premise of Table Manners is that women with disabilities have a right to full and equal access to gynecological care. This useful and straightforward booklet aims to provide women with disabilities and health care providers with practical information on how to minimize the impact of a disability on a pelvic exam. Written by two physically disabled women with backgrounds in the area, Table Manners advocates a "cooperative approach." The booklet discusses preparing for an exam -- rearranging furniture so a woman can negotiate a wheelchair or an interpreter can be seen; alternative examination positions when it's difficult or uncomfortable for the woman to lie in the traditional exam position (one position allows the woman to lie on her side) and things the clinician should be aware of depending on what position the woman uses. There are sections dealing with issues pertinent to visually impaired or hearing impaired women; techniques for assisting someone onto the exam table and special medical concerns such as hypersensitivity and spasticity. At the end, the guide lists a client's rights and responsibilities. The book is low-keyed and encouraging; its illustrations are clear and matter of fact. Though the specifics of the guide deal with pelvic exams, much of the information is applicable to all types of physical exams. Any person with a disability will find the guide useful. The central theme of Table Manners is respect for the individuality of health care clients. The authors note, for example, that some physically disabled women will want to use the traditional pelvic exam position while some nondisabled women will prefer to use an alternative position. One visually impaired woman may want to be verbally oriented to her surroundings in the exam room, whereas another may not. A hearing impaired woman should choose the form of communication she wants. If she uses an interpreter, the book points out, she may wish to have the interpreter present for most of the appointment but not for the actual exam. Should she want the interpreter to remain for the exam, the booklet points out, she should play a key role in determining where the interpreter will stand. The guide makes it clear that decision-making must be shared with the client. As valuable as it is, Table Manners fails to mention the needs or concerns of women with cognitive disabilities, and sometimes its tone is simplistic or patronizing. Its explanation of the purpose of a pelvic exam is superficial, and it fails to mention alternative exam processes, such as ultrasound, for those for whom a pelvic exam is just too uncomfortable. Nor does it discuss when muscle relaxants or local anesthesia may be appropriate. Interpersonal issues between clinician and client are largely ignored; no advice is given to a provider on how to respond to a client so brutalized by past medical experiences that she sees every medical professional as an adversary or is too intimidated to express her views. And it doesn't mention that some women may want to determine whether a provider or staff signs or has views on disability compatible with hers. Still, for a 16-page booklet, Table Manners succeeds well in what it is trying to do. It's both informative and empowering. We can benefit from reading it ourselves -- and it should be part of the curriculum of every medical school. Views of Ourselves Department In Search of the Politically Correct Disability by Sharon Kutz Mellem It always sets my teeth a little on edge when I find on the other end of the jangling office phone someone wanting to know if I have a disability. If the caller identifies herself as disabled, the conversation quickly takes on an aura of disability oneupmanship. It's like some perverse game of I'll Show You Mine If You'll Show Me Yours. Admittedly, I participate. That's because, whenever I'm asked the dreaded "disability question," I always feel violated -- which puts me on the defensive. The caller might as well have asked for my checking account balance or my bra size. I feel violated because I feel disconfirmed: does having a disability make me a more legitimate disability rights spokesperson? Or a less legitimate one? Does it make me more knowledgeable about what we published in The Rag? Does one's label somehow legitimatize their validity? Does it make me more moral, in some way? I want to respond in these situations by telling the caller that I feel violated by the question. Instead, I tell them I have rheumatoid arthritis. Does this now make me a legitimate spokesperson for disability issues? Now that I have a disablity label, does it validate what I have to say about disability rights? My announcement to the caller that I do, indeed, have a "real" disability is usually followed by a long pause. This, too, makes me uncomfortable. I don't know for certain what the silence means, and, in my discomfort, I feel a compulsion to lighten it up. I say, "I know, arthritis is about a minus ten on the Disability Cool Scale." The caller and I quickly get down to business after that. % % % I do not look disabled. I limp only occasionally. I do not yet use a sexy, hot-pink Motion Design chair. (I may never have to; who knows?) And, like my brothers and sisters who have HIV-related or other autoimmune diseases, there are few signs that readily identify me as "disabled." Some of us are not so easy to label. My barriers are not yet predominantly physical. Mostly they're invisible and often self-inflicted: my "minus ten" self-defense mechanism is a good example. Sometimes my barriers are family members, my friends and to a certain degree the subtle attitutes of some in the disability community. This is an issue that's never addressed upfront -- the reluctance to discuss it is itself a barrier, one that shows itself when I answer the phone and get "the disability question." This really happened: someone once asked me why I felt "the need to devour myself." The implication, of course, was that I was responsible for this disease which was now eating away at my joints. The person asking this question wasn't deliberately trying to be insensitive, I'm sure. But she understood "disability" only to mean things like birth "defects," paralysis and mental retardation. Arthritis, generally considered a disease of older people which is also thought to be brought on by poor stress management, was not to her way of thinking a "disability." Therefore she wasn't really interested in knowing my family history and hearing that I had a genetic predisposition to arthritis. She didn't want to hear abou the constant, tooth-grinding pain. She didn't want to hear about my difficulties climbing stairs, driving the car, working the computer keyboard -- my "invisible" barriers. She didn't want me to tell her about the extraordinary amount of energy it took me to "manage" the arthritis or about endless trips to the doctor for the meds that really never worked for very long and which always ate holes in my stomach. And she certainly did not want me to share my feelings of powerlessness against a disease which is still viewed by many people as a non-disease, not to be confused with a "real" disability. What she did want to hear was ownership. She wanted me to get to the root cause of "my" arthritis -- as if this discovery would somehow miraculously lead me to cure myself of a self-induced disease. I expected this kind of a reaction from her, though: she didn't have a disability. I sense that for some callers, there's an expectation that, because I work for a national disabiliy rights magazine, I should not only have a disability but it must be one that's politically correct (that is, manifested in some highly visible way that will play impeccably in the media). I sense that this same expectation extends to others who work in disability rights groups -- especially national ones. With our appropriate disabilities, we can function as appropriate movement spokespersons. We can chain ourselves to buses, crawl up steps, and things like that. The absence of common understanding within our community as to what "disability" means or doesn't mean makes a lot of us feel like illegitimate children. This feeling doesn't come from one specific thing. I'm not even sure I can put my finger on where it originates. No one has ever said to me, out loud, that "you don't really count as one of us because you don't look disabled." No one has yet produced a scale that says, "OK, all you quads are 10s and all you auto-immune folks are minus 10s." No; this sense of illegitimacy derives precisely from the fact that there hs been no serious open discussion in our community about the existence of this hidden hierarchy. I know it exists, though. I hear it in the long pause of the phone caller. The mere fact that one person would need to ask another if they are "disabled" is signal enough that it exists. So: Will someone please define for me the meaning of true "disability"? Just keep it to 50 words or less. Thoughts on thinking differently by Tanis Doe During all the work I have done with the disability rights movement, working against inaccessibility, for support services, equal education for deaf people, independent living for severely disabled people and political lobbying at the national level, there has been a steady message invading my thoughts: fear. Yes, fear. Call me phobic, but I believe that it is fear which is our greatest handicap in society. No matter how many articles are written and read, no matter how many media campaigns are held or accommodations are made, the very last disability to be understood, accommodated and then accepted will be disorders of thought. We can't seem to accept the idea of thinking differently. It is difficult enough to accept differences in physical appearance, speech, behavior, ways of coping, etc. But people are afraid of thinking differently. Perhaps I should personalize this, or "own" it, and say that I am afraid of thinking differently, too. I can assure you that I already think differently than most. I am both qualitatively and quantitatively "different" in my thinking. I am certainly more radical than the norm; still, I am open-minded. My thoughts are interconnected so that one small idea will trigger several related concepts and set my mind in a search mode looking for similaries and differences, applications and storage. It is not like a computer; I have a very human brain. I believe thinking and feeling are intertwined. I have often felt and thought that I feel more than do normal folks; and I certainly think more than is normal. I cry easily at movies and books. I anger easily at injustice. I can quickly rationalize either side of an argument -- and I can be quite convincing. Aha! sounds like a lawyer, an actress, or a psychoneurotic, eh? Precisely my point. The way I think is so deeply entrenched in how I feel and who I am that I am really terrified at the thought of thinking in any other way. Recent health problems have made me fear brain damage, and recent hospitalizations, combined with psychiatric consultation, have forced me to confront my own sanity or lack thereof. I will openly admit to going through one or two "clinical depressions," suicidal tendencies, workholism, emotional instability (and liability), uncontrolled anger and even self-destructiveness. Anyone who reads this who knows what "clinical depression" is will understand that even by itself without all my other "thought" differences, the effects of depression alone are devastating. I can remember knowing, believing with all my mind, that there was no way out. No one would help me because I was helpless, hopeless and humorless. I did think of death as an option that would bring relief. I also had the responsibility of caring for a child, though, so I had to discount suicide as the method of coping. Many others have not been so lucky. Depression affects you holistically -- your appetite, your energy, your sense of self, your concentration, your sleeping habits, your every mood and thought. That is scary. Any sane, so-called "normal" individual should be afraid of those types of uncontrolled differences. All people are afraid of loss and will grieve the loss of a friend, loss of vision, loss of a leg, and loss of independence. But it is beyond imagination to cope with the loss of sanity or loss of self. Having worked with people labeled with a mental handicap for many years, I believe that this fear also applies to retardation. People cannot bear the thought of not thinking in the way they are used to - - "normally." Each person has his or her own way of thinking, but we are -- yes, I am, too -- afraid of losing that natural ability or being left with "lesser" powers. This could be why Alzheimer's disease receives so much attention. We are all afraid of losing our minds. People with disabilities often argue that it is not the disability that needs removal but the barriers. Let us be disabled, as that is who we are, they say; but allow us some dignity and equality. Yet millions and millions of dollars are still spent on the prevention and rehabilitation of various disorders and disabilities. But for mental health and mental disabilities, there is less hope and less help. Sheltered workshops still exploit people labeled "mentally handicapped" under the guise of "training." People labeled "mentally ill" are being systematically abused medically, pharmaceutically, physically and socially, both inside institutions and out. Street people are left with no homes, no support; they wander in medication-induced trances unless they have sold their perscription drugs for food, cigarettes or alcohol money. I believe that society will learn to accept physical, sensory and learning disabilities, including such abstract ideas as addiction and alcoholism. This will happen long before mentally related disabilities are dealt with. People are sooo afraid of the unknown! Imagining how to live in a wheelchair, or be blind, may be a frightening challenge, but it is far more tolerable and concrete than trying on a mental disability. My belief is that we people labeled "mentally ill" or "mentally handicapped" will be the last to enjoy any true experience of equality. That's because we think differently. The Hierarchy of Acceptance by Carol Marfisi When we think of discrimination and stigmatization, we think of it as being imposed from outside. But we need to put time and energy into dissolving stereotypes which exist within the disability community as well. Whether we grew up with a disability or acquired one later in life, we know the unproclaimed hierarchy of acceptance which exists. Spinal cord injured people -- paras and quads -- have always been considered the creme de la creme. A little lower down the pecking order are those with muscular dystrophy, multiple sclerosis, people in wheelchairs who had polio, people with spina bifida. Still lower are those of us with cerebral palsy; even lower are those of us with related speech impediments. And of course on the bottom of the hierarchy are people with "mental deficiencies." It is this last group to which I think we as a community have been the most insensitive. I remember growing up, whenever explaining or defending my disability to others, I'd talk about my normal intelligence. I'd say things like, "At least I'm not retarded." This pompous attitude was reflected by my family, too. "At least she has a good mind." Implicit in that kind of thinking is the belief that to be mentally different is a fate worse than death. If we who belong to the disability community remain trapped in the stereotypic thinking that has oppresssed all of us from time immemorial, we will not be able to truly move forwared and educate others. It is not an empty truism that oppressing any one of us oppresses all of us. One of the best things that has evolved from all the political action around the passage of the Americans with Disabilities Act is that we not only moved forward politically but as human beings we laid down our insecurities about our disabilities and connected authentically and strongly with one another. One of the most memorable times for me during all the actions in Washington was to see how the leaders from ADAPT became focused on listening to those of us who have severe speech problems or who communicate in an unspeaking manner. I think that act in itself is what gives ADAPT enormous credibility, credibility which it truly deserves. Until we can look at each other and see the person -- the mind, soul and heart -- and not judge one another according to the degree of, or manner in which we function, we will never truly be able to accept ourselves and be proud of who we are. Disability Rights & Gay Rights Karen Thompson talks about The case that never should have had to happen After nearly a decade of anguish, legal manuevering and nationwide organizing, Karen Thompson finally won the right to care for her lover Sharon Kowalski, injured in an auto accident and relegated by her parents to "vegetable" status in nursing homes. The Minnesota Appeals Court's ruling last December was not only the victory for lesbian and gay rights that the press made it out to be, Thompson told The Rag. "It's a disability rights victory as well." Kowalski and Thompson had been lovers in March, 1983 when Kowalski suffered brain injuries in a car accident. Because the relationship between Kowalski and Thompson was not considered a legal relationship, guardianship over the disabled woman was given to her father. Thompson's efforts in early 1984 to be named Kowalski's guardian set off the first of continual court battles that persisted for nearly a decade. On December 17, the Minnesota court of appeals reversed a lower court ruling and appointed Thompson Kowalski's legal guardian, ending 8 years of legal wrangling and finally allowing, in Thompson's words, what should have happened in the first place."If we had been in a legally sanctioned relationship, this never would have had to happen." The issue decided by the Minnesota appeals court last winter was not only about guardianship, however -- though the court's finding that Thompson and Kowalski were a "family of affinity" will help not only lesbian and gay families but other types of nontraditional 'families' as well, according to Thompson's attorney, Sue Wilson. But because of the media's interest in "sensationalism," says Thompson, the issue was always seen purely in terms of a gay-rights issue and the disability rights issues got lost." The real issue, says Thompson, was that of "a human being not being allowed to have her highest quality of life; a human being being denied the right to see the people she wants to see." And the real victory, as Thompson saw it, was that the appeals court repudiated the lower court's reasoning that a disabled person's birth parents necessarily would know what was best for their disabled family member -- particularly in light of the fact that the disabled person had expressed preferences for options other than those chosen by the parents. Much of the appeals court's ruling consisted, said Thompson, of a rebuke of the trial court's conclusion tht "long term medical supervsion in a neutral setting such as a nursing home was the ideal" and that "Thompson was incapable of providing the necessary care" for Kowalski. Such conclusions, said the appeals court, weren't supported by the evidence. "What the court has found is that people with disabilities should be heard; people with disabilities should be allowed to live" as they want -- "things that are pretty basic but have been denied," as Thompson put it. From shortly after the accident, Kowalski expressed preferences for being with Thompson, preferences the courts discredited because Kowalski was "brain-injured." Kowalski has had to pay for years of neglect while the courts wrangled over who was to care for her. "Sharon was denied basic appropriate care," says Thompson. During the years Thompson was denied visitation rights, Kowalski developed "gum disease, she had a fungus growing on her tongue;" she'd been tube fed the whole time. Though she could stand in the first years after her injury, by the time the court re-instated visiting rights for Thompson in January,1989, Kowalski's legs, due to lack of therapy, "could no longer stretch beyond a 90-degree angle." Thompson said that Kowalski's mental condition deteriorated due to her lack of therapy in the early days after the accident. Kowalski's long-term memory, according to Thompson, is "intact," her "short term memory is terrible." According to Wilson, Kowalski's parents and Kowalski attorney Jack Fena, who had filed a personal-injury suit, had little interest in having Kowalski's case re-evaluated by medical personnel. "They didn't want the truth to come out," she said, adding that they were happy with Kowalski's placement in a Hibbing, Minn. nursing home. "All the evidence given to the court was doctored by the attorney for the Kowalskis," Wilson said. Fena "said that to give Sharon occupational therapy was just a waste of time because there was no way she would ever hold down a job," Thompson said. It was not until Wilson was able to win a court order for a medical re-evaluation for Kowalski that the case began to move in Kowalski and Thompson's favor. Thompson insisted that, despite perception, "I was never out to attack Sharon's parents. They are victims, too: of ignorance, of sexism, of the 'we'll take care of our own' mentality. Sharon's parents believed that to be 'maintained' was the best that could be done for Sharon; they felt she should be tucked away. Her father said, on the witness stand, that 'it's an embarrassment to take her out in public.' And then the court decided these people were the 'best qualified' to care for someone with a disability?" Thompson asked in disbelief. "It's not over. It's never going to be over for us," Thompson insisted. "And it's not going to be easy; but it looks, hopefuly, like we're not going to have to be in court anymore." The case of the woman denied the right to care for her disabled lover and the woman kept from appropriate rehabilitation began to gain nationwide attention when Thompson, determined to change the climate of opinion that kept her from being declared Kowalski's legal guardian, began to speak before women's and disability groups, going "anywhere anyone would have me." While the case gained the suppport of individuals within the disability community and some groups like the United Handicapped Federation in Minnesota, Thompson reported running into "trouble getting disability groups to be willing to put their names behind the issue because they saw it as a gay rights issue. One of the leaders in the disability rights community told me, 'We think Sharon's rights are being violated, but we can't afford to get involved in a gay rights issue.' " "As if people can pick and choose, and it's not all part of the same issue!" Thompson continued. "That kind of thinking is scary. "Some of the groups 'got it,' though; they realized it was a critical disability rights issue. So I don't want to negate what the disability community did. Some of the people in that community gave us an incredible amount of support. But I felt I shouldn't have had to fight so hard to get them to understand the issues." Thompson, who said she makes $30,000 as a teacher, has had over $200,000 in legal fees, "fighting for basic human rights I already thought we had. My finances are in shambles." She has traveled across the country speaking to raise money for the case. The honoria plus the donations, many of them in $1 and $5 amounts, have helped reduce her debt to just over $60,000. The traveling and speaking have amounted, as Thompson put it, to "a second job. But you do what you have to do." (Contributions can be sent to the Karen Thompson Legal Defense Fund at 3070 Fulton Circle, Clearwater, MN 55320). Now that she's "won" will her speaking out end? "I can't go back to being that quiet, apolitical uninvolved person I once was," said Thompson. "I know now that when we're silent, we're vulnerable. Staying active is how we protect our rights." But when people tell her "what a triumph," Thompson added, "I say, 'no, it isn't. The cost has been too great.' It's a legal victory; but it never should have had to have happened." Excavation Poems by Kenny Fries Excavation originally appeared in The American Voice, no. 20. Reprinted with permission. 1. Excavation Tonight, when I take off my shoes: three toes on each twisted foot. I touch the rough skin. The holes where the pins were. The scars. If I touch them long enough will I find those who never touched me? Or those who did? Freak, midget, three-toed bastard. Words I've always heard. Disabled, crippled, deformed. Words I was given. But tonight I go back farther, want more, tear deeper into my skin. Peeling it back I reveal the bones at birth I wasn't given -- the place where no one speaks a word. 2. Incubator As if from a goldfish bowl, through small, fogged eyes. And nowhere do I find you, even though I know you must have been there. The hands that turn me are the nurse's hands; the eyes watching are my father's. But where is the body from which I was born unwhole? Your body almost died giving birth to mine. Mother, after all these years I am asking why you never told me. We touch through a sheet of glass. Give me your hand -- help me find those missing bones, clear that infant's eyes. Open them -- wider. 3. X-Ray I am eight months old and looking for you, daddy, at the other end of the metal table. Your eyes told me all I need to know -- if I could just remember. I watch the large machine rattle down its track, feel the cold on my skin, when all these years I wanted the memory of your hands holding my twisted feet in the right position. Remembering this now I am still that eight month old, your son, staring into the eyes of that machine, trying to find you in the reflection it gives back -- nothing from the waist down. 4. Learning to Walk There is light at the end of the narrow hall. Enclosed in a cast, my shorter leg reaches for the ground. My knee can't bend. Scrapes against the plaster wall. My toes above the carpet. If I press them to the ground, the cast will break, my leg will crack -- If I close my eyes? If I don't look down? The hall, narrow as the cast, held by pins, my leg inside. No bone will hold my weight. No arms will end my fall. Palms pressed against the dark canal, I lift my weight. How far is the light? With open eyes -- my foot on ground. 5. Body Language What is a scar if not the memory of a once-open wound? You press your finger between my toes, slide the soap up the side of my leg, until you reach the scar with the two holes, where the pins were reinserted twenty years ago. Leaning back, I remember how I pulled the pin from my leg, how in a waist-high cast, I dragged myself from my room to show my parents what I had done. Your hand on my scar brings me back to the tub and I want to ask you: What do you feel when you touch me there? I want you to ask me: What am I feeling now? But we do not speak. You drop the soap in the water and I continue washing, alone. Do you know my father would bathe my feet, as you do, asi fi it was the most natural thing. But up to now, I have allowed only two pair of hands to touch me there, to be the salve for what still feels like an open wound. The skin has healed but the scars grow deeper -- When you touch them what do they tell you about my life? Metaphors we could do without "Strike by Blacks Paralyzes South Africa," The New York Times, November 5, 1991 "Soviet Pledge on Cuba Leaves U.S. Paralyzed," The New York Times, September 13, 1991 Here's a problem none of the language guidelines touch on: the metaphors about disability used to denote bad things. One of the biggest hurdles to developing a strong image of people with disabilities is the rampant metaphoric use of terms that define us as stand-ins for bad stuff. While groups raise justified complaints about terms like "victim" and "afflicted," the metaphoric use of blind, crippled and paralyzed to refer to evertying ffrom bigotry to bad economic times continues unquestioned and unabated. "Czech Book Industry Paralyzed by Freedom," announced The New York Times on February 17, 1991. "A new turn in the Serb-Croat conflict paralyzes federal rule," wrote a New York Times copyeditor in the May 16, 1991 issue. "We've been paralyzed by our politeness," Bishop William Frey, president of Pennsylvania's Trinity Episcopal School for Ministry, told Time Magazine on February 18, 1991, referring to a church debate. In 1991, we also got: "In Financial Scandals, Is Blind Greet Meeting Sightless Watchdogs?" (The New York Times, September 15) and "Some fear blind pacifism has replaced militarism" (The New York Times, January 26). Of all the appropriated metaphors, none is used more readily than "blind" to signify something bad. The New York Times's Andrew Malcolm on March 4, 1991 wrote of "society's blindness to abuse. Another New York Times reporter referred on March 30 of "the legal concept of 'willful blindness.' " The New York Times's Anna Quindlen, in a November 9 column on Magic Johnson and AIDS, showed exactly how blindness is used for this purpose, by referring to "the horrible bigotry and blindness [italics ours] that has accompanied the [AIDS] epidemic." She is using blindness here not in its real sense, but metaphorically, to mean "refusal to face facts." That use is as old as the Bible: "None so blind as those who will not see." In another newspaper, another Quindlan column was headlined, "In time of plague, some parents remain blind to reality." The Detroit Free Press headlined Mitch Albom's March 16, 1991 sports column, "Blind ambition wins Iditarod." How can we expect the metaphoric use of blind to change when even our own "organized blind" quote its use, as the National Federation of the Blind did in reprinting a December 10, 1990 People Magazine story headlined "Armed with a White Cane, Sightless Robert Toye Tapped His Way to the Teller and Robbed Seventeen Banks Blind" and raising nary a complaint about the headline? What about that phrase "blind justice"? It's good, right? It's supposed to mean "impartial, right? Does the currently in-vogue phrase "color-blind society" bother us? It's cut from the same cloth that gives us "blind justice" What about blind greed? Blind ambition? Blind pacifism? Blind to reality? Willful blindness? Here's a clue: all these phrases mean something bad. The "bad" connotation comes from being paired with the word "blind." Then there's the metaphor "crippling," which we've written about before. We have the New York Times weighing in with "Overcoming a crippling fear of school" (September 4, 1991) and "Lawmakers deal a crippling blow to the B-2 Bomber" (November 1, 1991). The Washington Post gave us "Lean Times Cripple Agencies" last January 28 [and we're sure this is only one of many examples had we had a more vigilant watchdogs!]. The Detroit Free Press gave us "Doctors say care facilities inside Iraq are crippled" last March 16; last April 4, the Louisville Courier Journal headlined a David Broder syndicated column "Crippled Generations." Ten days later, Middletown, N.Y's Times Herald Rcord told readers that a "Railroad strike threatens to cripple country." An article in the March/April 1991 Rag pointed out that "crippled" used this way means "washed up, finished, kaput." And don't forget deaf. "He was deaf to her pleas." Turnin ga deeaf ear (find deaf words) Though we don't have a grab bag of them at present, we all know the phrases readily enough: "So what's wrong with a little colorful language!" an editor barked at us once when we tried to dissuade him from using this kind of metaphor. Here's what's wrong with it: "Blind," "paralyzed," and, yes, "crippled" are words that in real life identify people who are trying against huge cultural odds to maintain a shred of dignity in a society that uniformly denigrates them to worse than second-class status. And these same identifiers -- "blind," "paralyzed," and "crippled" -- are used in the metaphoric world of words to signify bad things. In that metaphoric world, they carry negative messages all their own, so much so that they serve as today's most common synonyms for "incapable" and "unable." Meanwhile, we are so unhappy about the burden of negative imagery that we have people going around giving out $50,000 to somehow come up with a word that can give the concept of our lives a "positive ring" -- and we have nearly 70,000 people suggesting words. Why? Why do we need a positive word? Because the words assigned to us have all been appropriated by metaphor-wielding pundits and artists to mean "bad." That's what's wrong. Is it any wonder so many of us misguidedly try to dream up "positive" terms? All the real terms we've had have been taken from us by writers looking for clever ways to say "bad." If we could get some dignity back into those old words of ours, we wouldn't need new words. Writers, give us back our words. They're not your metaphors, they're our words -- perfectly good words for our human condition. It's you who have made them bad. The political correctness police force will howl now that we're destroying the language by insisting that these metaphors be abandoned. But they're the ones who are out of line. There are plenty of other words that can do the double duty writers have been requiring of our "blind" "paralyzed" and 'crippled." Instead of "paralyzed," they should try using words like "frozen," "stuck," "stalled," "stopped." Insteading of using "crippled," they can us "broken" -- which is what they're trying to say, anyway. For "blind" -- well, do they really need anything those places where they insist on sticking in the gratuitious "blind"? When you get right down to it, you realize why these words work so powerfully as metaphors, don't you? They derive their power from the fact that they're making the connection with the reality of what society believes about a person who is blind, paralyzed or crippled. Think about it. Once you think about it, don't you think it's time it stopped? Give 'em a break! Calling someone a "victim, afflicted and confined to a wheelchair" creates a pretty awful image. A reporter who uses such terms should be told what's wrong with that kind of phrasing. That's something The Rag has advocated for a long time. Maybe people have taken our message too far. Terms like "the disabled" and "disabled people" (or even "the handicapped") simply don't create the kinds of problems that calling someone a "victim" do. They're not even in the same category. When The Rag went on a campaign a few years ago to get people to quit using "victim" and "wheelchair bound," little did we know that overzealous readers -- and the movement in general -- would make too much of a good thing and try to enforce "people with disabilities" on journalists. The term is stilted, unnatural and coy. Anyone ridiculing our movement for insisting on such a term would probably be well within their ridiculing rights. "People with differing abilities" is an absurdity worse only by degree. The same goes for the euphemism bloc of phrases. We've heard reporters who have dug hard to come up with really decent stories about disability rights issues condemned because a copy-editor injudiciously wrote "the disabled" in the headline. We've watched as reporters have started learning about this movement, started trying to convince their editors that disability rights was worthy of coverage in the nation's largest dailies and newsweeklies, only to be chastised because, from time to time, a "handicapped" slipped in. What's wrong with us? Can't we give them a break? Sure, ask 'em why they used it, suggest they use "disabled" -- but praise their coverage of discrimination, of the Americans with Disabilties Act regulations, of whatever it is that they reported on. At least they're reporting on issues! C'mon, gang! Don't we know a victory when we see one? Many of you reading this must think The Rag has done a 180-degree turn. We used to criticize reporters for the words they used; now it looks like we're urging readers let them off the hook. Listen closer. We're saying there's an issue of context here. There are bigger issues than mere terminology, and we must get involved with the bigger issues. A feature writer can pen the most heartwarming story of courage and inspiration with nary an "incorrect" term and easily leave all the old myths intact: that the subject, brave and inspiring, is courageous beyond all reckoning, warming the hearts of all who meet her because of the disability she's fighting to overcome. Such a story, replete with stereotypes, with nary a whiff of a real issue, would win plaudits from many in the movement if it merely stuck to the terminology sheets so many of us hand out today. But let a reporter investigate a sheltered workshop or report on segregated housing or interview activists fighting to get folks out of nursing homes, and let that reporter insert "the disabled," and out we come in force, mewling that the reporter didn't say "people with disabilities." Let's stop a minute folks, and recollect: What is it we're fighting for? Letters to the editor Fighting bureaucrats is fun May the Force continue to be with Greg Solas and Marilynn Phillips ("The Power of One Person," January/February). It is they and the few like them who make changes benefitting all of us by having the guts and intelligence -- and common sense -- to justly and persistently demand what is rightfully theirs. I will never understand why the majority of us are so afraid of alienating bureaucrats we don't even like, and some vague "public" we don't even know, that we are willing to trade in our independence, our access, our freedom. Greg and Marilynn show us that we don't need an organization behind us or a majority vote to get changes made. You alone and, as the rock song says, a bad, bad attitude, can do it. As the article pointed out, the victories aren't that hard and losses are the rare exception. The only thing your article didn't emphasize is that fighting the bureaucrats is not only effective but fun. I'm sure Marilynn and Greg would agree. Being personally empowered is a genuine rush you can't buy. E. O. Graber's article on the National Organization on Disability ad in Business Week ( " 'Willing and Able' sends odd message") justly incriminates our sell-out "advocacy" organizations. But why does Graber (and seemingly most disability rights activists) have to put down technology that can benefit us? In this case, he derides a product created not by profit-seeking, nondisabled professionals but by a paraplegic who wanted something better than the available wheelchairs, and, in the same spirit in which Greg and Marilynn act, didn't wait for somebody else but invented it himself. I have a Hi-Rider power chair. I love being able to get right up to things becasue I don't have 18 inches of hardware sticking out in front of me. Standing allowes me not only increased reach -- not that big a deal to me or the rest of the quad squad -- but more importantly, pressure relief that was only available before when I was lying down and unproductive. Two years ago, after more than 20 years of fulltime work and having a disability, pressure sores and severe backaches won out. I had to quit work and spend most of my time in bed. The Hi-Rider gave me back my active life. It is faster, goes further on a charge and is better designed and tougher than any other chair. Technology like this should be the object of praise, not ridicule, from disability rights activists. The activist message should be that no assistive technology, by improving life for some of us, replaces the need for access and accommodation for all people with disabilities, and should never be regarded or recommended as a solution. The Hi-Rider is not $19,000; mine was $12,800. I didn't pay for it, either. I'm just a poor, broke, maxed out and overdrafted slob like the rest of us, getting Medicaid and trying to get off SSDI with a backroom FAX operation I sometimes call a small business. I pushed through the whole appeals process and forced my state VR agency in Kansas to buy it for me. You can do it, too -- for the Hi-Rider or any other technology you need -- by folloing Greg's, Marilynn's and my example: When you know you're right, just don't take "no" for an answer. The technology you need, without compromise on the quality or price, is your right. BARBARA BRADFORD KNOWLEN South St. Paul, Minn. Readers can order Barbara Bradford's book, A Consumer's Guide to Getting Services and Equipment, or How to Kick Ass and Win, for $10 from Barrier Busters, 515 S. 3rd St., S. St. Paul, MN 55075. -- ed. Can't generalize 'power' The points made in "The Power of One Person" cannot be generalized beyond the states of Maryland, Rhode Island and the few other enlightened states that have enacted human rights laws. Ohio is one state where no such protection exists for disabled people and the weaknesses of the Section 504 regulations become painfully clear when their enforcement is attempted. I have been in a battle with Cleveland State University for well over ten years. Lawyers have been unresponsive to my outcries for justice; the mainstream media have been made aware of the issues involved and have, for the most part, remained silent. I finally came to the conclusion that further independent action would be useless and a waste of my time. The Ohio General Assembly has apparently taken a "let's pretend the problems don't exist and maybe they'll disappear if we ignore them" attitude. This attitude is regressive, but it's the one sent out daily when you try to get a legislator involved to pass a human-rights law in the state. In fact, one state legislator has run interference for the University on many occasions, going so far as to lie for them about a court order that enjoined me from pointing out the University's inadequacies in serving the needs of people with disabilities. The problems are widespread and affect every postsecondary institution in the state. This attitude must change; however, I probably won't be around to see it if the Solas-Phillips model is used. To ensure that "physicalism" is dealt with in a sure and swift maner, we must continue to organize. These organizations would then quite possibly be successful in rooting out the ongoing issues that are not readily apparent. The could also force the ruling bodies into recognizing that people with disabilities have the power to remove an individual from office if that person responds in a manner that is outside the disability community's best interests. It's regrettable, but a little fear in someone's eyes is half the solution to control of any situation. In spite of what I've said, I'm glad to see that the laws are being enforced in other parts of the country. WILLIAM J. PAVUK Maple Heights, Ohio Grateful for activists I am very grateful for The Rag and for the initiative of the activist individuals you write about who are doing big and little projects to forward disability issues all over the country. Their pluck gives me the confidence to get more involved, too. BET MACARTHUR Cambridge, Mass. Dignity laced with passion needed I must admit that, as I was reading through The Rag, I wasn't paying close attention to the italic print in "Providing the access spin" (January/February). As I read it, I was taking offense at the language and terminology being used. Finally I woke up and realized it was the quote of reporter Jeff O'Heir writing for the Staten Island Advance that had offended me multiple times. I was in an accident three and a half years ago and now use a chair for mobility. It took me a little over a year to realize that walking does not equal normal. Since then, I've worked within the system to go back to school, keep my benefits and work toward my Master's degree in barrier-free design. Having recently been interviewed by three different newspapers myself, I emphatically agree with The Rag: It is the interviewees' responsibility to stress the illegality and discrimination caused by barriers, attitudes of society and use of terminology in the reporting. The article that resulted from the first interview I did had terminology deficits as well as a mealy-mouth feeling to it. I quickly learned the lessons for talking to reporters. Everyone with a disability should again read the "tips" box on page 28. I'm no one important; it was a fluke I was interviewed. My point is this: One never knows when they will be representing the rest of us to the press. It is imperative that we come across with dignity laced with passion. If we don't present ourselves to the public with respect and self-esteem, how the heck is society supposed to respect us and hence change negative to positive attitudes? DEVONNA CERVANTES Stillwater, Okla. Harkin doubts I attended a campaign appearance of Tom Harkin at our Civic Center and came away with serious doubts about backing him ("The Disability Question and the '92 Campaign," January/February). Although the appearance was specifically aimed at disabled people, the representative I talked with didn't know what "accessible" meant, much less where it might be found: she assured me that the women's room behind the sign-in table was accessible. She didn't believe me when I told her it wasn't. (She did believe a janitor when he told her it wasn't; she was ignorant and insulted me.) I've been told that accessible restrooms were a problem at an earlier appearance elsewhere. Harkin made it very clear that his participation in the ADA was happenstance, not the result of advocacy. I'm also told that both his handshake and his demeanor changed markedly between the meeting with disabled people and the meeting with everyone else. His handshake with me was limp and clammy. I understand it was warm and firm at the other meeting. And -- why meet separately? When Harkin was circulating after his speech, I asked him if the ADA would have any relevance to the issue of rationing medical care. Answer: "I hope not." Of course, I was hoping that there was somthing in the AA that could be invoked against rationing on the basis of physical condition. ALICE MAILHOT Lansing, Mich. Silence on the psychiatric holocaust I was very troubled to read "Silence on the Psychiatric Holocaust" by Stephen Mendelsohn in the January/February issue. Of course, one could only be troubled by the detailed account of the mass extermination of psychiatric and disabled individuals in Nazi Europe. I have studied this dark period in world history and know that, unfortunately, similar tales of horror exist for homosexuals, Jews, gypsies, communists and myriad other "undesirables" -- more than 12 million human beings in all. But, in bringing this aspect of the Holocaust to the attention of The Rag's readers, Mendelsohn presents unfair and unnecessary characterizations of "certain prominent liberal Jews" who he says are "part of a deliberate conspiracy" which practices "hypocrisy." Here he clearly misses the point and the oppressed becomes the oppressor. The end of World War II in 1945 revealed a Jewish community which had lost over six million souls -- one third of all the Jews in the world. While the Final Solution included diverse groups of human beings as victims, it was primarily designed for, targeted to, and most successful at "solving the Jewish Problem." This does not give cause for any person, Jew or Gentile, to grieve or express outrage for the loss of any one of those lives over another; each was sacred. But in total numbers and impact on their collective psyche, Jews cannot help but be disproportionately influenced by the Holocaust. For the past four decades, Jews, more than any other people, have dedicated themselves to insuring that the Holocaust be remembered and not repeated. Recent attempts by Hitler sympathizers to disavow the very existence of the Holocaust and its impact on the Jewish people should be aggressively challenged at every opportunity by Jews and all others regardless of mental or physical ability or political persuasion. A world rampant with historical revisionism and anti-Semitism will not be a world friendly to the interests of readers of The Disability Rag. It is not for me to analyze why Mendelsohn could not present his otherwise informative expose without beginning and ending the piece with pejorative remarks about "liberal Jews," particulary Alan Dershowitz. As a longtime subscriber to The Disability Rag, I have always been impressed by the disproportionate contributions of apparently-liberal Jews to the pages of your excellent publication. (Perhaps their heightened awareness of the tragedy and indignity of the Holocaust is a factor?) Stephen Mendelsohn's article was informative, persuasive and very, very important. One would hope that in the future such articles will continue but without assigning blame to fellow victims. CHARLES A. SALKIN Dover, Del. I am tremendously dispposed to include the following rights to "Silence on the Psychiatric Holocaust" by Stephen Mendelsohn in your January/February issue. The latter was leaner and war I in advocacy. To abridge right to fight the Holocaust -- I am a survivor to learn. What we need is to feel you the right and our way will come. Into being we need a law such as ADA to gain employment, me. As Anita's soap we suffered you and again. The judge is tougher we need you stiffer. The law is right we need you. The writer hits it and hits it to miss it because of you. We are done with you and forfeit you a letter if not we can challenge and write it ourselves. Then we ourself. The vision of one to come from a Holocaust and survive is it. Rigor and attitude you know the song and stuck in the old melon again. You mustn' really have it you sing it an Old Anthem and stick. Up your throat with a rubber hose. And win it. To fit is Mental Illness and we deserve it. To connect it we lure it in matter or you know "flattery" to have it free to see the light we're in. And you better believe we won and wonder of the planet to come in it! So let's have it a better life and before justice the law. And our gang will care for life and justice. Not principle. We right you to be handled for lawyer and retort. The letter is redundent, ha ha!! The splendid have it the right. We have actually denied him the labor. SCOTT F. HEMINGWAY Bloomsburg, Penn. Special O Whatever the merits of Billy Golfus's article, "Special O" (November/December), I was too distracted by his use of the term "officeress" to notice. I assume he means by that a female police officer. It is not clear what the importance of the officer's gender is to the story. In my reading, the term reeks of disdain for women in what he seems to perceive as a male role. I was surprised and disappointed that the editor did not challenge that. JOHN F. BACKE East Elmhurst, N.Y. "Common ground" There is no common ground between pro-life activists and disability rights activists ("Common Ground," September/October). The two groups' aims could not be more divergent. The former seeks to restrict and turn the clock back on women's rights. The methods they use are nothing short of terrorism. They have firebombed abortion clinics, harrassed doctors and patients; they shout and scream at the women going in, telling them they are murders and sluts. Disability rights activists are for the liberation of persons with disabilities. They want to break down the barriers that exclude and restrict their members; they want to increase rights and choices. The tactics used in their struggle, for example, direct action like blocking traffic with wheelchairs, have been necessary because in general the government doesn't listen to disenfranchised groups until they are forced to. We would do well to remember the civil rights movement and the women's movement. The latter, of course, won the right to have an abortion. It is telling to look at the attitudes pro-lifers have regarding sexuality and pregnancy when it comes to disabled people. A majority of pro-life forces are on the whole against sex education and use of contraceptives. The question of the right-to-die and doctor-assisted suicide as it relates to persons with disabilities is a difficult one. Our government has severely limited life choices for disabled people in all spheres of life. The impact of living a restricted life can influence a person's decision to die, as it did for David Rivlin. I agree with Marilyn Golden when she asserts that "at a minimum, right-to-die policy must be formulated from a position of genuine understanding about the full potential and quality of life available to people with disabilities." It is not in the interest of the disability rights movement to align itself in any way with the right-to-life movement. HELEN REDMOND Chicago More animal liberation Lawrence Carter's letter (January/February) in reply to my letter (November/December) criticizing The Rag's pro-animal-liberation bias sidesteps the main issue. My main point was that, since there are disabled people (and disability activist groups) on both sides of the animal-liberation issue, it is biased of The Rag to publish only articles that support animal liberation and none that oppose it. Another point is that, since animal research has benefitted disabled people, it is hardly a disability-rights position to hold that disabled people should be denied the possibility of future benefits from this source in order to protect our furry little friends. Carter's harangue about wasteful and useless animal research is hardly an indictment of the whole field. Every field has its share of bad apples who do misguided things. The point is that animal research and experimentation have done a lot of good. How does Carter think insulin was discovered? And how does he think aspiring surgeons should learn to perform open-heart surgery. On humans? Would he like to volunteer to be one? Carter is right that "vivisectors" have sometimes used arguments that degrade disabled people but so has the pro-choice movement, which he presumably supports. A movement's goal isn't wrong simply because some of its tactics are. I see no reason why I should turn into an opponent of either animal research or the pro-choice movement simply because other supporters sometimes say offensive things. Finally, Carter's remark about "the myth of able-bodied salvation . . . through animal experimentation" overlooks the wide range of attitudes and values among disabled people. Some disabled people want very much to be able-bodied, and some do not. Sneering at disabled people in either category is presumptious and cruel, and claiming that animal liberation somehow serves the interests of people in the former is disingenuous. It's time to admit that the animal liberation movement exists to benefit animals, not disabled people. Some disabled people will doubtless choose to support animal liberation anyway, just as some choose to support anti- abortionism. But neither of these causes should exaggerate its "common ground" with the disability rights movement in an attempt to gain adherents. FELICIA ACKERMAN Providence, R.I. Although it's true that disabled people come down on both sides of the animal-liberation issue, it's also true The Rag itself has a point of view, so it shouldn't be surprising that we give more space to points of view that further The Rag's philosophy. All publications do this. There are plenty of well-funded pro-animal-research disability publications out there; we like to think the perspectives we publish merely balance out the issue. -- ed. We Wish We Wouldn't See... (Photo of cute kid on crutches, smiling) "THANK YOU !! >From Jimmy And All The Special Kids In Monroe County. People Caring For Special Kids Committee. Mary Kay Thayer, Chairperson." -- Ad in the Monroe, Michigan, Evening News, September 27, 1991. -- Submitted by Jon Sarra, Toledo, Ohio. "Disabled hands, so twisted and frail" -- Ad for Rott's-A-Companionship, Inc., Prescott, Arizona, appearing in the July/August issue of _The National Focus_ -- Submitted by Richard M. Skaff, San Francisco. "Direct Link for the Disabled, Inc . . . Linking People and Resources Together . . . How would YOU feel if your sick child needed help and you didn't know where to turn? . . . Julie called Direct Link with a _broken heart_. Her precious little baby was only a couple days old. Yet she felt like she'd just been given a _death sentence_ -- Down Syndrome . . . Patty, one of our Information Specialists, listened compassionately . . ." -- Submitted by Doreen Kuneck, Merced, California, who wrote: "I continue to get questionably-phrased pleas for money from this group." "Wheelchair Bound? Now You May Be Able to Walk "The PEERS Program (Physical & Electrical Engineering Rehabilitation Systems) offers a new approach to those confined to wheelchairs. PEERS uses a combination of (italics begin) physical therapy, electrical stimulation, and the Douglas Reciprocating Gait System (italics end) to help selected individuals walk with specially made braces. It's not a cure-all and it's not the answer for everyone. But for highly-motivated, hard-working patients, PEERS can lead to a life out of a wheelchair. It's worked for hundreds suffering from S C I or M D. Some even abandon their chairs. Walking aids circulation, weight loss, and decubitus ulcers. (italics begin) Developed by Professor Roy Douglas and Dr. Paul Burns. (Italics end) "Call or Return Card" -- Submitted by George Ebert, Syracuse, New York Do you see things like this - that just continue the stereotypes? Send them to us and we'll print them on these pages. Please send clean originals to: We Wish We Wouldn't See . . . The Disability Rag Box 145 Louisville, Kentucky 40201 United States of America