During the Kelly Dillery trial in Sandusky last March,
I ran into this risk-controlling mentality head on

Controlling Risk? or Controlling Us?
by W. Carol Cleigh

The non-disabled world views us as a threat. Many of the rules they make to control risk when we're around are more about controlling us than controlling risk.

During the Kelly Dillery trial in Sandusky last March, I ran into this risk-controlling mentality head on when the director of fire prevention, Capt. Tamie Myers, disregarding her superiors' instructions to leave us alone, ordered several of us to move to "clear an aisle." She told me to move right next to another person's chair. When I tried to explain that I need several inches beside my chair in order to mobilize it (to push and for casters to turn), a heated discussion ensued. This ended with her storming out of the building, slamming the door and later resigning as Sandusky's director of fire prevention. She never asked the walkies who stood about blocking the hallways to move.

Risk control started as an insurance concept. It involves such things as having workers wear safety goggles and hard hats when doing construction or heavy manufacture. Another example of the risk-control mentality is fire codes -- the codes that have often forced us from the aisles of theaters because we're considered a "fire hazard."

Many of the rules and laws we live by derive from risk control. Seatbelts and airbags are examples. Crash tests with sophisticated dummies lead to safer cars and less cost for insurance companies.

There is a tension between risk control and personal freedom. Usually a very high standard of proof and careful testing is needed to establish rules or laws that limit freedom in favor of safety, especially for adults.

The problem for disabled people is that rules that limit our freedom are made in the absence of evidence -- and even against evidence that does exist. Clearly irrational rules are imposed by non-disabled "experts." Both we and the usual burden of proof are absent from the rule- making process.

Although there are abundant examples of this for all disability types, I will use examples from my own experience as a user of an ultralight wheelchair.

When I first got my new ultralight and wanted to ride a bus, I complied with the drivers' instructions to lock my wheels on the lift. I quickly learned not to do that. I was flipped forward once (barely catching the handholds) and backward several times. Nearly being pitched to the pavement from several feet in the air gets your attention. Experience taught me that I'd better not lock my wheels on a lift.

Yet drivers continued to insist that I lock them. Some refused to operate the lift until I locked them.

I did some research to locate studies on the safety of locking the wheels of an ultralight on a lift. Surprise -- I could find none. Not only do there appear to be no studies about ultralights, there appear to be no studies at all -- not one shred of evidence that it is safer to lock -- or not to lock. Yet drivers continue to insist that wheels be locked on lifts. Why?

Another example: Transit authorities insist that wheelchair users wear seatbelts in buses. Studies of this are ten years old, so none include ultralights. These crash studies of wheelchairs are pretty disturbing, though. When the wheelchair is improperly secured (which is much of the time, in my experience) a bus seatbelt actually causes injury: the loose wheelchair pushes up into the tight seatbelt and crushes the user, causing potentially fatal injuries. The wheelchair then collapses under the stress of the securement system and the trauma of falling into the wreckage completes the job. You may well be less safe with a seatbelt on than without one: Why then do transit agencies insist you wear it?

Capt. Myers never asked the walkies standing about blocking hallways at the Dillery trial to move. This showed that she needed to control us but not them. But why did she want to control us?

Those who would control us become indignant, paternalistically corrective, abusive, enraged and sometimes violent when we refuse their control. A driver who insisted I wear a seatbelt (despite a letter from the agency saying seatbelts are optional) became enraged to the point of physical violence by my refusal. Why?

A deeply seated, unspoken part of the non-disabled world's need to control us stems from fear of us as a threat to the "good" ordering of society. From time immemorial, disabled people have been portrayed in art and literature as a threat to the well-ordered society.

In the middle ages, Gypsies and "creeples" were seen as both products and repositories of evil which could destroy the social order. Thus, Dumas' hunchback Quasimodo and the Gypsy girl Esmeralda change places several times in The Hunchback of Notre Dame. They are interchangeable both as devalued people and as dangers to the good order of society. Society, as portrayed by Dumas, controls the threat first by exclusion and ridicule, then by punishment, using execution as the final resort.

As did Quasimodo, disabled people today face outrage and violence when we dare to step out of our assigned roles (compliant, pitiful, "always have such good attitudes," "always say thank-you," etc.). This is chiefly because those roles were and are assigned to control us. The function of this control is to minimize the threat we pose to the good order of society.

Non-disabled people feel comfortable correcting our behavior and venting anger, frustration, or outrage at us for violating their expectations. This is inherently violent. Their purpose, conscious or not, is to re-impose and re-inscribe the able-ist norm.

Threatening the able-ist social order is at the core of refusing to cooperate with irrational controls. Destroying the good ordering of society when it is not, in fact, good for our people is precisely the point.

The Work Incentives Improvement Act passed the Senate (ref to earlier DRN file) but Congress is continuing to haggle over its cost as the effort moves to the House. In May, it was Sen. Trent Lott (R.- Miss) who held up things, saying the law would benefit "millionaires."

Los Angeles disability activist Nancy Becker Kennedy wrote to Lott about his stalling tactics.

'Why are you thwarting people?'

I testified before the Senate Finance Committee last year and told the story of a woman who was frustrated literally to death by this work disincentive -- Lynn Thompson, whose suicide after losing benefits because she worked drew public attention prompted changes in Social Security in the 1980s and gave us the 1619 program.

What sounds like a couple of numbers to some sounded like a liberty bell to people with disabilities who wanted to work.

Some of us did go to work. And now we have worked for years, paying into the Social Security system, converting automatically to SSDI eligibility.

The Social Security Disability Benefits program was supposed to be a superior benefit that rewarded years of work. But it didn't work that way for me and others like me. There is no 1619 sliding scale on SSDI.

Now I have used up my last work month. I had to turn down an audition, am stopped dead in my tracks producing my play, and want to take a community college teaching position to keep from going crazy, but it doesn't pay enough for my attendant or medical care. I'm just one of 75% of disabled people who want to work. We can't risk losing the attendant care and health support services that allow us to live in the community, because if we dare to make money but don't make enough of it for long enough or have to stop, we will be pushed further away from society --into nursing homes -- those waiting rooms for death -- where tax payers spend several times the cost to take away our freedom.

The current policy may seem like benign neglect, but it is in fact cruel --very definite and effective segregation that divides us from the mainstream of society.

I never liked the term "work incentive" because we have never needed an incentive to work. We only needed a way not to commit a kind of "red tape suicide" that would remove us from an independent life in the community if we tried to work. The Work Incentives Improvement Act could be the beginning of an end to the dangerous game of "chicken" we play with our freedom when we attempt to work. The Act could soon untie us from dependence on cash benefits and welfare.

What are you accomplishing by thwarting so many people with your refusal to move this bill? What could you be thinking?

You say you're concerned that millionaires would use this program. That is how SSDI is structured -- anyone who pays in gets the benefits. Why does this only concern you when it comes to people with disabilities? Is it your belief that it is somehow "right" for disabled people to live in poverty? For G-d's sake why would you want to keep so many people from contributing to our country?

I worked long and hard for many years with quadriplegia at jobs that were too strenuous so I could pay for my own attendant care. I am no longer capable of making that much money. Why am I being punished for the years I was able to pay into the system?

It is almost killing me to sit at home when I want to help. For G-d's sake please search your soul and let our people be free to give this country the gifts we have to offer.

Do the math

Electric wheelchairs can cost $11,000, a flat tire on that wheelchair $200 -- and then there's that $6 pill taken four times a day for chronic bladder infections from $12 indwelling catheters.

If you happen to need a respirator, that's another $3,000 a month. You'd better start pulling down the salary of a corporate CEO if you plan to make enough money to support the expensive habit of being disabled.

Not everyone needs a respirator, but when you do the math, one can see that to cover all these needs -- and pay attendants for their services as well -- one must make a very handsome living to pay for all of this without some assistance.

-- N.B.K.

Initiative 2000 underway

Plans are bubbling all across the nation for an "Initiative 2000" year-long series of events capped with the July 26 10-year anniversary of the signing of the Americans with Disabilities Act.

Longtime disability activist Mark Johnson is functioning as official cheerleader for the large group of activities nationwide, including hundreds of local celebrations, national groups' events, a calendar, a photo archives project and a relay.

The effort has already started, with plans to create a "Spirit of ADA" flame from an oil rig on Alaska's North Slope this summer -- "significant because ARCO Alaska made modifications to the worksite to accommodate the manager of the drill site," says Alaska disability activist Duane French, who's spearheading this segment of the "torch relay," which will eventually wind up the east coast to end in the Washington, D.C. for the 2000 ADA anniversary. Plans are also being formulated for former Pres. George Bush to award a medal to "someone who has made significant contributions to the disability community'; for a national calendar and dozens of other events nationwide.

For ongoing information, visit the Initiative 2000 website at http://www.initiative2000.org -- to get involved, contact Mark Johnson, Shepherd Center, 2020 Peachtree Rd., NW, Atlanta, GA 30309. 404-350-7490 (email: Mark_Johnson@shepherd.org).

Texas event plans draw fire from activist

The National Organization on Disability's plans to hold a "Year 2000 Disability Conference" at the George Bush Presidential Library Conference Center at Texas A&M University have drawn fire from ADAPT leader Bob Kafka, who calls it "ironic" that a conference on the Americans with Disabilities Act would be scheduled in "one of the only states that has shown opposition" to the ADA's "integration mandate." The state refused to withdraw support for Georgia in the Olmstead Supreme Court case, siding with the state in favor of institutionalization.

Kafka likens the action to "the NAACP holding a meeting in Alabama or Mississippi during the battle for civil rights." Former President George Bush and a host of government officials, heads of foundations, media, national disability leaders, community and business leaders are expected at the NOD event.

Hearing impaired UPS workers file ADA class action

by Leye Jeannette Chrzanowski

Hearing impaired United Parcel Service (UPS) workers filed a nationwide class action lawsuit against their employer in May, alleging violations of the Americans With Disabilities Act.

The suit, Bates v. UPS, says the company refuses to provide communications accommodations to its workers -- no TTYs or visual emergency warning equipment. It doesn't give deaf employees written materials when it presents information orally to other workers, says the suit. UPS, based in Louisville, KY, is the largest package delivery company in the world, with gross annual income more than $24.8 billion.

The suit also claims that UPS refuses to let qualified hearing-impaired drivers drive delivery vehicles. One of the named plaintiffs in the suit, Eric Bates, has twice completed the company's driver certification process and met both state and federal qualifications -- and has satisfied even stricter DOT requirements for large trucks. Yet UPS, he says, has repeatedly denied him an opportunity to drive any of its delivery vehicles.

Disability Rights Advocates and Schneider and McCormac, two San Francisco law firms, are the attorneys on the suit.

Copyright 1999 The Disability News Service, Inc.

People with disabilities less likely to vote,
says new report.

People with disabilities are less likely than nondisabled people to vote -- and less likely to be registered to vote -- says a study released in April. The voting gap between people with and without disabilities is especially wide among those who are age 65 and older.

"If people with disabilities voted at the same rate as those without disabilities, there would have been 4.6 million additional voters in 1998, raising the overall turnout rate by 2.5 percentage points," said the report, "Empowerment Through Civic Participation: A Study of the Political Behavior of People With Disabilities." The study tracked voting patterns of the 1998 election. Participation gaps are concentrated among people with disabilities who are non-employed, older, and have difficulty going outside alone.

"Those who are employed and/or younger (18-44) are, in fact, about as likely as otherwise-similar people without disabilities to engage in these activities," said the report.

While people with disabilities are less likely to view the political system as responsive to "people like me," they are reportedly as likely as people without disabilities to follow government and public affairs most of the time.

The report was based on a national random-household telephone survey of 1,240 American citizens of voting age, conducted after elections in November, 1998. Disability questions from the upcoming 2000 Census were used to identify people with disabilities, supplemented by additional questions about the nature, severity, and duration of the disability. The sample was stratified so that interviews were conducted with 700 people with disabilities and 540 people without disabilities. Survey respondents were asked standard questions about voting in 1996 and 1998, voter registration, voting mobilization by political parties and others, and perceptions of the political system.

"The finding that participation is lowest among those who have difficulty going outside the home alone -- despite the fact that these forms of participation can be done inside the home -- indicates the importance of accessible transportation and interaction with mainstream society," said the report, which was prepared for the Disability Research Consortium, the Bureau of Economic Research at Rutgers University and the New Jersey Developmental Disabilities Council. "Isolation and confinement to one's home can decrease 'social capital' -- the social skills, knowledge, connections, and identification developed from regular interaction with many other people.

Program to open design professions
awarded NEA funds

"There are very limited numbers of designers with disabilities in any of the design professions -- architecture, graphic design, industrial design, interior design, landscape architecture or urban planning," says Elaine Ostroff, founder of Boston's Adaptive Environments Center. The profession doesn't recruit them; neither school nor voc rehab counselors direct them into design professions. She says this lack "perpetuates the practice of design that isolates, excludes and stigmatizes people with disabilities."

The Center has been awarded funds by the National Endowment for the Arts for a year-long planning effort dedicated to the late Ron Mace, FAIA that Ostroff says will lead to an increase in people with disabilities being directed into the design professions. The project also involves the Center for Universal Design at North Carolina State University.

Project director Daniel G. Hunter of the University of Oregon says he's trying to locate design students and professionals who have disabilities "as part of our background research, and as a potential base for establishing a network of designers with disabilities." If you have information or are interested in the project, contact Hunter by e-mail at dgh@oregon.uoregon.edu or by phone at 541-741-1768. There's also information at the website: www.adaptenv.org/21century/

Group petitions FDA on harmful perfume

The Environmental Health Network is petitioning the U.S. Food and Drug Administration to declare Calvin Klein's Eternity Eau de Parfum misbranded . EHN says the fragrance contains toxic chemicals but carries no warning label FDA regulations require warning labels on products when "necessary or appropriate to prevent a health hazard."

Consumers have complained to the FDA before about neurological and respiratory problems from the perfume. But due to the "trade secret" status of fragrances, ingredients are not required to be listed on the label. "This makes it extremely difficult to pinpoint substances in a fragrance that may trigger adverse reactions," says EHN. "But many of the substances in Eternity have known adverse effects on health." Independent lab tests confirm the presence of chemical hormone disrupters, carcinogens, and skin and respiratory irritants.

This is the first time a group of those with chemical sensitivities has actually petitioned the FDA over a fragrance, says Marsh. The FDA has 180 days to rule on the petition. A decision is expected in the fall.

Duke University's laxness of research rules
brings brief funds suspension

Duke University was ordered "to immediately suspend enrollment of new subjects in all . . . federally supported research" on May 10, after a federal Office for Protection From Research Risks' review of Duke's institutional review board minutes last fall revealed many irregularities, and changes ordered last December were deemed unsatisfactory.

Institutional review boards are charged with independently reviewing and approving research projects to ensure that human subjects are protected (See "Guinea pigs don't get to say 'no,'" Nov./Dec. 1998) and that biomedical and non-biomedical research is ethical and in compliance with existing federal regulations.

But four days after it had suspended Duke's millions of dollars in research grants, the federal agency reinstated most of the funds, saying Duke had " developed the satisfactory corrective plans."

Duke's may be one of the few federally funded research facilities this closely scrutinized. A federal commission examining issues surrounding human research subjects recently concluded that the existing oversight system needs significant revision.

-- Disability News Service, Inc.

NYS Attorney General 'waging campaign'
against ADA

New York activists held protests in Rochester, Buffalo and New York City in early June to protest the state attorney general's recent position in three lawsuits in which he says the state is "immune" from the Americans with Disabilities Act.

The immediate focus of the June protests was the case of Syracuse-area couple, Navella and Vernal Constance, who are suing the state's SUNY Health Sciences Center in Syracuse for failing to provide a sign-language interpreter.

"The office of New York state Attorney General Eliot Spitzer is waging a legal campaign against the ADA, " say advocates. The attorney general's office, they say, argues that Title II of the ADA, which covers public entities, is unconstitutional. Spitzer says states are "immune" from the requirements of the ADA.

In the Constances' case, Spitzer's office argues that state-operated hospitals are not required to provide sign language interpreters for people who are deaf.

Although this specific case involves sign language interpreters, "the implications of this position for all people with disabilities are far-reaching and ominous," say advocates.

Blind activists sue for accessible ATMs

The National Federation of the Blind of Pennsylvania has sued Mellon and PNC banks for failing to provide voice-equiped automatic teller machines. Only the announcement by Wells Fargo that it would install new aural technolgy averted a similar lawsuit in San Francisco by blind activists.

Wells Fargo promised to install 20 of the new machines in the Bay Area, and in Los Angeles and San Diego counties within the next 12 months. They said they would have 100 machines in place by Sept. 1, 2000.

The Pennsylvania lawsuit, filled in early June, says banks violate Americans with Disabilities Act by failing to get the new machines. More suits can be expected if banks do not switch to the newer systems.

Many ATMs have Braille labels, but the bigger problem -- besides the fact that only a few blind people read Braille -- is that the Braille labels don't communicate the on-screen messages.

Wells Fargo's machines will allow aural instructions to be heard only via audio jacks, which deliver information privately to blind customers by a plug-in at the ATM site.

Win for Florida chair users

If you were on Medicaid, lived in Florida, and needed a motorized wheelchair, forget getting Medicaid to pay for it. Florida Medicaid rules would pay less than $600 for a wheelchair. That's changed now, thanks to a 1997 class-action suit brought by the Advocacy Center for Persons with Disabilities against the state charging discrimination. In May, U.S. District Court Judge Donald L. Graham issued an order which "prohibits the Agency for Health Care Administration's Medicaid program from denying medically necessary motorized and customized mobility devices under prescription (including wheelchairs, scooters and other motorized mobility devices) to persons who qualify for Medicaid."

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