25 years of Independent Living in Sverige
Panel: Independent Living abroad, speech by Marilyn Golden 08.11.2008.
Disability Rights Education and Defense Fund (DREDF)
I feel that I’m in an odd position -- because as an American, I don’t think it’s right for Americans to go to other countries and carry on about what they’ve done, or suggest what other people do; Americans have done too much of that already! However, Adolf says you really want to know! So I’ll mention a few things we’ve been worked on, over the years.
I'm a Policy Analyst with the Disability Rights Education and Defense Fund -- we have an awkward acronym of D-R-E-D-F, or "DREDF," which sounds like you coughed while you were sneezing. I'd like to say a word about DREDF. We are the leading national law and policy center in the U.S. dedicated to the civil rights of people with disabilities - our office is in California, and our main activities are policy development, training, technical assistance, and legal advocacy. DREDF was closely involved when the ADA went through Congress, in the law's shaping, development and passage. We have trained on it, in over 45 states. And DREDF has worked closely on other laws too, like the Fair Housing Amendments Act and the Individuals With Disabilities Education Act.
A word of introduction about myself - I joined DREDF's staff in 1988 have been involved with the ADA since its trek through Congress. Since then, I’ve done a lot of policy work on ADA transportation and a few other issues, as well as conducting a lot of in-depth ADA training. I also do some international disability policy work for DREDF, assisting disability groups in other countries in the development of their equal rights policies.
Wide Range of Issues
The Independent Living movement in the United States, which is an important part of our overall disability rights movement, has been involved in a wide range of issues, and has entered into work on every level – in personal ways, and on local, state, and national policy and services. It all started with the well-known story of Ed Roberts and his friends in Berkeley, California.
The birth of Berkeley's disability movement is usually traced to the acceptance by the University of California at Berkeley of several significantly disabled students in the early '60's. The University was forced to establish a program of services for these students. When the students graduated, they were no longer eligible for university services, and being enterprising frontier-forging types who, like most college grads, weren't about to return to a dependent living situation after experiencing the independence of campus life, they needed a community agency to provide the services that had been available to them on campus. Joining with like-minded others in the community, they established the Center for Independent Living (CIL) in 1972. It grew to become a model program that has since been copied nationally and internationally.
Today, there are 336 federally funded Centers for Independent Living, called CIL’s or ILC’s, about 100 more State funded CILs, and about a hundred or so more that are foundation- or donation-funded. So, there are approximately 500 US-based independent living centers.
Developing around the same time, my organization, DREDF, has helped establish a strong civil rights legal foundation for people with disabilities. We work on all disability civil rights issues – education, housing, access, deinstitutionalization, and others as well. We have also done our best to collaborate with disability rights attorneys and advocates internationally who are using law reform to challenge discrimination and exclusion of people with disabilities.
We and many others in the disability rights and independent living movements have worked on issues more varied than I can say, including access, benefits, deinstitutionalization, and more. By access, or accessibility, I mean access to buildings, communications, transportation, and electronic and information technology including the world wide web. As one of our favorite legislators, Congressman Norman Mineta, said in 1990, "Disabled people face an obstacle course as they go through society,” and in recognition of this, many in the IL movement worked to bring about the Americans with Disabilities Act (ADA) and other laws to remove those obstacles and provide equal opportunity.
We are still far from the accessible United States promised by the ADA and our other laws, but the discrimination, stereotypes, and barriers that have accumulated over thousands of years are beginning to crumble. The examples are countless – these laws have truly changed the face of America - structurally, in terms of communications, and certainly in people’s minds.
Accessibility – Buildings
In terms of building access, I would like to address two main subjects. First, attached to this paper is one I dug up from 1987 (PDF, 116 KB) describing how, long before there was an ADA, we worked in Oakland, California, a stone’s throw from Berkeley, to use California access laws dating from 1968 to overcome enforcement barriers in one city and provide a significantly more accessible environment.
Second, I’d like to discuss how today, one of the reasons for our increasingly accessible environment in the United States is our two separate but complementary systems of accessibility requirements that operate in tandem: the ADA and other civil rights law on the federal level, and the system of building code enforcement on the state and local level. The federal-level ADA requires action by people with disabilities; while state and local governments operate the code enforcement system. Between them, every year, more buildings are made accessible to people with disabilities.
The ADA achieves building access via requirements for accessibility in new construction; when buildings are altered or remodeled; and in the existing facilities that make up the vast majority of our building stock. Naturally, the requirements for new construction are the most strict; and for existing facilities, they’re the most flexible. Yet still they are there, and based on these requirements, very significant numbers of public buildings such as restaurants, hotels, government and private offices, and so forth, have become more accessible to people with disabilities, either through voluntary compliance, or as a result of disability advocacy, or due to enforcement actions instigated by people with disabilities who have filed complaints or lawsuits.
Let me say a quick word here about lawsuits. While the U.S. is well-known for using the courts more than just about anyone else, and while ADA lawsuits have, in fact, been extremely effective in achieving accessibility on many occasions, please notice that lawsuits were not the only way I mentioned that our laws work – though sometimes it is the only one people hear. There is also voluntary compliance with the law; as well as the results of disability advocacy, and also the results of people with disabilities filing administrative complaints with local, state, and federal enforcers of disability laws – that is, basically filling out a form about the problem and an agency investigates the complaint.
All these approaches under the ADA require action by someone – initiative must be taken, often by people with disabilities. The other system for achieving accessibility happens invisibly, in the background. That is our system of state and local building codes, all of which require disability access to some degree. These codes only cover new construction and building alterations, and there are all kinds of pitfalls that can happen to defeat a happy ending – the 1987 paper addresses all these pitfalls in detail. But over time, code enforcement has gradually improved, uneven as the progress may be. And one good thing about it; is that the disability community doesn’t need to lift a finger. The city and state personnel check building plans and look at the building site to ensure the codes are followed. Though not always effective, it is done well enough, often enough for this system to have a significant positive impact over time on creating an accessible environment.
As I’ll discuss more later, none of this purports to say that everything in the U.S. is accessible. There are still all kinds of problems. But accessibility has gradually improved over time, and a big part of the credit belongs to these two complementary systems, the ADA and other disability rights laws on the federal level, and building code enforcement on the state and local level.
Accessibility – Transportation
The battle in the United States for accessible transportation was led by ADAPT, or American Disabled for Accessible Public Transit, in the streets throughout the 1980s. ADAPT blocked buses, held rallies, and blocked transportation professionals from getting into conferences, often going to jail in their struggle, until the ADA required fully accessible public transportation. Once we attained these rights, we were shocked to learn that, as DREDF’s Director of Government Affairs, Patrisha Wright, said when the ADA passed, that our guarantee people with disabilities merely “the same lousy mass transit available to everyone else.”
We have worked hard, and so have some good federal enforcers, and our results are that today, far more people with disabilities can use buses, trains, and paratransit than before the ADA. At the same time, we have a long way to go. Major problems remain:
In many cities, there’s still a failure to announce bus stops so visually impaired people can navigate our public transit systems, even though our laws do emphasize using the mainline fixed route bus and rail system as preferable to individualized door-to-door transportation, for anyone who can.
Regarding paratransit, which some people need due to their disabilities, in some cities, an eligible rider can’t even get in on the phones to talk to a dispatcher, or reach their destination in a timely way. Sometimes, riders with disabilities still must arrive at work two hours early in order to get there at all.
In some cities, there’s still too little next-day paratransit service available – that is, a ride available tomorrow if you ask for one today – even though the ADA requires next day service, just as it requires everything else I’ve listed.
It isn’t just money. We knew, several years ago, of one city that’s providing paratransit service in relative compliance with the ADA, at $19 a trip, while other cities with very big problemsare spending $33 a trip!
Also, some of the rail systems that carry much of our nation’s transit-using population don’t have enough accessible stations (some of which are not required by the ADA)
And by and large, taxis in the U.S. are not accessible; this is also something that largely is not required by the ADA.
Accessibility – Other Kinds
There've also been some successes and interesting developments in accessible technology under laws with the same goals as the ADA. For example, Section 255 of the Telecommunications Act of 1996 required manufacturers of telecommunications equipment and providers of telecommunications services to address the needs of persons with disabilities as they design, develop and fabricate their wares, unless it is not readily achievable to do so. The Federal Communications Commission’s rules were very good – they require manufacturers to ensure each product is accessible.
And Section 508 of the Rehabilitation Act (amended in 1998) requires electronic and information technology procured by federal government to be accessible, so visually impaired, hearing impaired, and physically disabled people will be able to use federally-purchased computer products, FAX machines, copiers, telephones, and so forth. The idea is that the federal government is such a big purchaser that this will force changes by manufacturers of all their electronic and information technology, to make it more accessible.
Some progress has been made – but many problems remain.
Civil Rights (Equal Rights; Non-Discrimination)
A revolutionary concept from the disability rights movement is that people with all types of disabilities belong to a single class, all of whom share one thing in common: disability discrimination.
Our movement views our strength as coming from our cross-disability representation: the disability movement must represent people with all kinds of disabilities, including not only traditional categories such as mobility impairment, visual impairment, and hearing impairment, but also people with psychiatric disabilities, cognitive disabilities, environmental sensitivities, learning disabilities, head injuries, AIDS, and other medical conditions like cancer and epilepsy, to name but a few.
We’ve learned that much of the isolation, segregation, and exclusion from disability discrimination can be significantly changed. In the U.S., after 35 years of hard work, we've achieved a lot of public access, and significantly greater equal opportunity. Is it perfection? Far from it! But a lot has happened.
Another insight is the need for action. We need a large strong movement, achieved through building coalition. As far as I can tell, the biggest challenge any of us must solve is how to push hard enough. To know you really deserve change; to be firm enough; to know you're powerful; to organize ourselves. If you go after something and don't get it, go back again and again, with more and more people. Eventually, they'll have to listen to you.
When I’ve been in Europe, the debate after I speak is usually, will non-discrimination laws be useful or not? I would say, why not establish them, as one tool? It needn’t be the only thing you do. It’s not the same in every country, of course. For us, has been very powerful. Persuasion has never been enough: laws can force a change. One of our earliest experiences of this was the Metro subway system in Washington DC in the 70s. A brand new subway system that wasn’t accessible! A lawsuit under Section 504 of the Rehabilitation Act brought its planned opening to a standstill until elevators were put in. It was unheard of!
We’ve learned that non-discrimination laws are not a panacea, but one of many important tools. The U.S. disability rights movement has had great success using the tool of passing laws, but different countries may need different solutions at different times. Even in the U.S., a law doesn’t change everything instantly. While it takes much time and effort to pass a law, that’s only a starting point. A law cannot implement itself. But an active movement can go far toward implementing a law. Even this does not completely eliminate discrimination. But experience with disability rights laws and other groups’ civil rights law (such as race and sex civil rights laws) in the U.S. has shown that a good law with vigorous implementation efforts can have a great impact on society.
But what makes our laws work, when they do -- what makes anything work, when it does – is political influence to press government to do its job. Simply complaining about government, and simply waiting for government to act, isn't effective in any country, I don’t think.
Political influence isn't easy to get anywhere -- but it’s possible. In the U.S., we don't dictate dx policy, not by a long shot – but we're a strong player, and we've gained influence, to greater or lesser extent, depending on the issue. It may feel, at the beginning, like you don't know how, but we felt that way, too.
What we’ve learned over the last 40 years – things have happened appropriate in their time:
Our 504 sit-in in 1977, when people with disabilities protested in a federal building and refused to leave for weeks, until the regulations we wanted were published, was right in its time
The ADAPT demonstrations in the 80s, blocking buses and going to jail, were right in their time.
The struggle to pass the ADA was right in its time. To pass this law, everyone in our nationwide movement mobilized, whether it was our Republican-appointed members of the National Council on Disability, helpful Congressional sponsors, and grassroots in all fifty states. What has it done? There are so many examples.
The law affects a huge swath of American life. As a result of the ADA and other disability rights laws, we’ve had changes “in how our nation’s institutions conduct routine business: in stores, on buses, in the office, and in our use of telecommunications.” (Jane West, 1995)
It's not just the buildings. The ADA is also Video Relay Services so deaf people can communicate in sign language over the internet; or use the TTY Relay to order a pizza over the telephone like anyone else; and sign language interpreters when they go to the doctor if the pizza upsets their stomach. It's not just employment. The ADA fights for people with psychiatric disabilities who take professional exams, to protect them from intrusive questions about treatment and past hospitalizations, questions that are irrelevant to their abilities. It's not just lifts and ramps on the buses. The ADA makes the bus driver call out the stops, so people can know where they are, even if they can’t see their surroundings. Even this most stubborn of ADA requirements is slowing being implemented.
It’s impacted everything from lowered ATM machines that talk, at banks in every American city, to sign language interpreters for deaf people serving on juries in courtrooms across the country, to people with visual impairments aided with technological accommodations on the job. Across the US, national chains of hotels, movie theaters, supermarkets, banks, gas stations, and health clubs have removed barriers. Schools and day care centers assist children with diabetes so they can attend, too. In some cities, sidewalks and streets are more accessible because of the ADA. Greyhound Bus Lines, once a major target for demonstrations, went from complete resistance to pretty good compliance with the ADA.
Other examples include:
Lowered ATM’s right away
Sign interpreter for Certified Public Accountant review course
Changes to state professional licensing examinations (whether for the lawyer’s bar exam, medical/nursing licenses), there are new limits on what inquiries can be made to applicants, and requirements to provide modifications to exams)
Deaf access to telephone emergency services
Sign lang. interpreters by attorneys, psychiatric hospitals, an art institute, a domestic violence program
Access to apartment building (FHAA)
Mitsubishi settled a “failure to hire” case by U.S. Equal Employment Opportunity Commission (EEOC) that started with 2 people and grew, as a class action, to 87 (this was in 1998). The issues were refusal to hire, no accommodation, and training of supervisors.
Children with diabetes can now attend childcare programs because of an ADA class action suit.
And in a news report this month [November 2008], a rheumatologist who declined to provide an English-to-sign-language interpreter for a deaf lupus patient because it would have cost him too much money, has been ordered to pay her $400,000 in damages. Irma Gerena visited Dr. Robert Fogari some 20 times during which she was diagnosed, prescribed drugs and given treatment without fully understanding what was being done to her. She asked repeatedly for an interpreter, even going so far as to provide Fogari with an interpreter's business card and to have the interpreter call to explain the doctor's obligations under state and federal law. Fogari, however, preferred to rely for communication on Gerena's partner, also deaf, their 9-year-old daughter and occasional written exchanges. At trial he asserted that hiring an interpreter, at $130 to $200 per visit, would have been too expensive, given that insurance compensated him only $49 per visit. (Justice For All e-mail list serve, 11/13/08, <firstname.lastname@example.org>)
Here are some examples of what the ADA can do, especially in the area of government:
The Washington DC Superior Court no longer excludes blind people from juries - as they certainly shouldn’t - because of a challenge under the ADA.
Telephone emergency services in the US are known across our country as 911 services. In New York City, that service is accessible to hearing impaired people, due to a challenge under the ADA.
An Ohio County is now providing access to its courtrooms because of an action under the ADA.
Sometimes people with disabilities need help knowing that what's happening to them is discrimination. Some years ago, back towards the beginning of ADA implementation, Department of Justice (DOJ) investigators met with of AIDS organizations, because people with AIDS has not been filing complaint. They briefly explained the ADA's requirements, and one of the leaders said, "Hey, you mean when dentists charge people with AIDS an extra $50 instrument cleaning fee, that's illegal discrimination?!" Yes, it is.
But is every employer following the ADA? Every hotel? Every court, every service? No, no, no, and no! Of course not, and no one pretends that it is.
Genuine problems remain:
Our public rights of way, that is, our streets and sidewalks, have a long way to go.
U.S. disability benefits and provision of personal assistance are way behind western Europe, for example.
In employment particularly, many lawsuits have been decided in a way that does NOT benefit people with disabilities. This, actually, may be on the way to being fixed – more about that later.
In a political movement like ours, there are victories, there are losses, and we keep up the struggle. It is not all positive! The key is, is our society as a whole moving forward, to impact the lives of many individuals for the better?
To bring about a country with less discrimination and more accessibility, it comes down to us. Every person, no matter where you find yourself, has a role to play.
Back to my chronology:
Countering of backlash was right, in its time
Just as with the civil rights movement of the 60’s, our movement has experienced backlash and hard challenges. This is nowhere better illustrated than in the numerous print and electronic media stories that suggest the law is being abused, misapplied, misinterpreted, or has generally run amok. For a period, negative TV reports about the ADA by reporters (such as John Stossel) frequently emphasized ADA complaints for their shock value even when the EEOC and other agencies have declined to investigate them. Even US cartoon shows (such as the Simpsons and King of the Hill) have aired episodes misrepresenting the ADA. While these mischaracterizations annoy and often offend us, they are also evidence that our movement and our laws have succeeded, not failed. We have their attention. And we know that it is the journalists who have run amok, not the ADA.
Since the ADA became law, it has also come under attack in the Congress. We have beaten back these attacks even during the dog days of the Contract for America in the 90s. To date, there have been no significant weakening amendments to the ADA, though the Bush Administration is still trying in its waning days, and we’re still fighting it! And thus, our resistance to the backlash continues until this very week, and beyond.
ADA Amendments Act passed, in its time
One of the key challenges we have faced for many years is overcoming how narrowly the Supreme Court has chiseled down the definition of disability under the ADA. It’s been most hurtful to people with, for example, diabetes and epilepsy, who are often excluded from our laws’ benefits. But that’s not all – people with amputated limbs, hearing and visual impairments, and wheelchair users alike have absurdly been ruled by the courts not to have a disability.
But just this year , the definition of disability in the ADA was strengthened by a new law that amended the ADA for the better, the ADA Amendments Act, pushed through Congress by a very interesting coalition between the disability community and important sectors of the business community who agreed that the law had been reduced inappropriately by Supreme Court decisions. Having support from some in the business community helped the disability movement pass the law and keep it from attracting amendments that would hurt other provisions. The down side is that this definition is still in the medical model, despite the international trend against that model. But the up side is that the new definition has thrown off a great deal of the baggage the courts have put on the ADA since its passage. This law goes into effect this coming January . It should help. We will see.
Good Disabilities and Bad Disabilities
The ADA Amendments Act, in its purest sense, was an attempt to end a problem. That problem is, that in every era, there are “good” disabilities -- that is, good in the eyes of society, and “bad” disabilities. The bad ones are the ones society doesn't find acceptable. In my grandparents' era, mental retardation was a shame, to be hidden -- today it is simply a disability. In my parents' era, epilepsy caused great fear -- today it is just a disability. In the 80's, AIDS was a “bad” disability -- courts in the U.S. showed great nervousness about covering contagious disease, especially that one, under our Rehabilitation Act. But the tide shifted, and Congress explicitly covered AIDS in the ADA, though not without a fight. There were other fights when the ADA was in Congress about covering drug addiction, which is certainly a disability, but a “bad” one, in the eyes of society. In the '90's, behavioral disabilities became the “bad” disabilities -- for example, children with behavioral disabilities in public school have been the subject of considerable contention in Congress during the reauthorization of IDEA, the Individuals with Disabilities Education Act, which protects the rights of children with disabilities in school in the U.S. And the media stories never stop about the dangers of people with psychiatric disabilities going off their medication, even though statistically, less than 1/10 of 1% of people with psychiatric disabilities is violent. This has led to an extremely disturbing trend of vast new systems of forced treatment of people with psychiatric disabilities in their homes; if they refuse their medication, other services like housing are denied. And then we find out that the prime backers of these forced treatment programs are the drug companies. Meanwhile, the ground shifted so much on AIDS since the ADA was debated in Congress, that our the Supreme Court reaffirmed that even people with HIV infection who have no symptoms of the disease yet, are covered by the ADA. In the U.S., HIV has become a “good disability.”
It's all so silly. There may never be an era without disfavored disabilities. But it's key for disability rights advocates to remember that every kind of disability is part of the disability community, and every single one deserves strong protection from discrimination.
Encouraging Development of Non-Discrimination Laws Outside the U.S.
It’s been very interesting to work with people in countries outside the U.S. on the establishment of strong disability rights laws. A main emphasis is trying to assist others to avoid our mistakes! While the struggle is different everywhere, some common themes have helped spur movements forward, such as building broad coalitions, uniting with many different disabilities, pushing even the most traditional disability organizations to be allies in obtaining these laws, finding friends in government even when they are few and far between.
It would be a pleasure to discuss with others the situation in your countries with disability non-discrimination laws.
Another big project of the IL movement across the U.S. has been to free people from institutions such as nursing homes to independent life in the community, using the ADA’s protections (and many other tools) to crack one of the last bastions of disability isolation, segregation, and second-class citizenship. The ADA is providing legal leverage against the horrific abuses faced by the most impoverished and isolated of our people who are incarcerated in institutions. I know that Sweden doesn’t have this kind of institution – but some of the other countries represented here may.
The key ADA breakthrough came in a good 1999 Supreme Court decision called Olmstead vs L.C. Two women with mental retardation and also psychiatric disorders had been institutionalized in a locked facility in Georgia. Physicians determined they'd been adequately treated and they could go into a community setting to live, thus leaving the institution.
(A community setting could mean in their own homes, or in a small residential facility located in a neighborhood or a business area, where they could follow theid\r own schedule, wherever they wanted to go, by day, but still receive services where they live; there are many types of settings that would be considered as based in the community rather than being institutionalized.)
When the state refused to comply with its own doctors and serve the women in some setting that wasn't a locked institution, they sued the state of Georgia, alleging the state's failure to provide long-term care in the community was a violation of ADA. Why the ADA? Because the ADA's regulations require services the most integrated settings appropriate to the needs of the individual - that is, the setting allowing the most interaction between people with and without disabilities that's appropriate for the person with a disability.
This case became cause celebre; the disability community across the country organized state by state to pressure each state's Attorney General not to go on record agreeing with Olmstead, and an unprecedented number of states changed from supporting the state of Georgia in the legal briefs they submitted, to withdrawing that support. This was a highly unusual and effective campaign.
The decision was a big success: the Supreme Court held held that unjustified isolation of people with disabilities in institutions is discrimination under the ADA. The Court's decision affirmed that integration is a key ADA principle, and the court based this on two findings: 1. That institutional placement for people who could deal with living in the community perpetuates the assumption that these individuals are incapable of functioning at a higher level; and 2. That consignment to institutions severely limits the lives of people with disabilities - to work, to social life, to the marketplace, to religious resources - in innumerable ways. The ADA has done its job: to work against isolating people with disabilities and excluding us from the community.
There are limitations to this court decision: it says the person in an institution should be in a community setting when: 1. State staff says they're ready, 2. if the person wants to go, and 3. if it doesn't fundamentally alter states' program. The court decision stated that the judgment must consider states' available resources and needs of other people with mental disabilities in the community for state treatment. The decision laid out a key question: we should be looking at whether a state has comprehensive, effectively-working plans placing qualified persons with mental disabilities in community settings, and a waiting list that was moving at a reasonable pace. It is not acceptable if the waiting list is holding people back in order to keep the institution fully populated.
Judging a reasonable pace includes factors such as, what are appropriate placements? How many people are in institutions who should be in the community? What is the infrastructure in a state, and what is the state doing to create infrastructure of community programs? What are the available resources in the state - what's in the state mental health budget? How are people being served? In some states, placing people in the community will save money. Some resources should be spent identifying state programs that are exemplary, and make them the model for other states.
Disability spokespersons have said this case, Olmstead v. L.C., is our "Brown vs. Board of Education" which established the basis for racial integration of the public schools. But "Brown" was decided in 1954, and it took until the late '60's and '70's for Brown to take real effect. We are trying to move faster, to accomplish the promise of the Olmstead ruling.
Opposing the Legalization of Assisted Suicide
Disability rights advocates and organizations in the United States have become prominent in the battle against the legalization of assisted suicide. We are working in coalition with doctors, hospice organizations, religious and right-to-life organizations, and many others in cross-constituency strange-bedfellow coalitions which have been largely very successful in stopping bills, initiatives, and referenda in many U.S. states seeking to make it legal for a doctor to provide a patient with a means to end their lives. The two well-known failures have been in Oregon, where assisted suicide has been legally operating for 10 years, and Washington State, where voters passed an Oregon-style assisted suicide initiative just a few weeks ago [in November 2008]. While these 2 locations have garnered headlines, few people are aware that our coalitions have successfully prevented the legalization of assisted suicide in about 24 U.S. states, defeating many bills and referenda that would have made it legal.
Before continuing, I should make it clear that we are not opposing aggressive palliative care – that’s pain and comfort care – nor the right to refuse or withdraw medical treatment. Those are legal in every U.S. state, and should be legal everywhere, we believe. Nor are we opposed to the proper, narrow application of a treatment called palliative sedation, when death is truly imminent. We are only opposing more aggressive ways to hasten death, such as legalizing a lethal prescription of barbiturates to bring about death, or a lethal injection by doctors.
Fears and prejudices about disability, and the lack of good personal assistance and long-term care for people disabled by disease, are significant in fueling the movement to legalize assisted suicide and euthanasia across the world. Because the public image of disability is as a fate worse than death, and because a disability can indeed bring about misery because of the lack of good support services (particularly for people not connected to the disability rights movement), our societies have unfortunately become fertile ground for the forwarding of these laws. Many have argued that these laws play directly into the economic pressures of the health care system to relieve itself of its most expensive patients, and this can hardly be more true anywhere than in the United States, where on behalf of DREDF, I have worked over the last 9 years in a half-dozen states against proposed assisted suicide laws.
There are many other disability-related implications of assisted suicide – they are too numerous to mention them all – but I want to address at least one more: the issue of depression. People with psychiatric disabilities and people with depression are theoretically precluded from eligibility for assisted suicide in U.S. assisted suicide proposals and under the Oregon and Washington State laws, yet that is more on paper than in fact. In Oregon, the detailed guidelines for doctors under the assisted suicide law argue that a depressed person can be a legitimate candidate for assisted suicide if they have legal competency to make decisions for themselves. In fact, a man with a documented 40-year history of acute depression received lethal drugs in Oregon. And we know that situational depression and even suicidal wishes can accompany a new disability. There have been many studies showing that people with disabilities rate our quality of life as high or higher than the general public rates their own, but not during the first 15 days of being disabled, though that is the length of the required waiting period under the Oregon and Washington laws. There is obviously a clear danger that, in that early period before one learns the truth about how good one's quality of life can be, it would be all too easy, if assisted suicide is legal, to make the final choice that is irrevocable.
Another crucial disability-related factor is brought out best by these statements of Diane Coleman, President of the U.S. disability advocacy organization that has lead on this issue the longest. Their name is Not Dead Yet. (Is that name wonderful, or what?). Diane has written that the
“… public image of severe disability as a fate worse than death … become(s) grounds for carving out a deadly exception to longstanding laws and public policies about suicide intervention services … Legalizing assisted suicide means that some people who say they want to die will receive suicide intervention, while others will receive suicide assistance. The difference between these two groups of people will be their health or disability status, leading to a two-tiered system that results in death to the socially devalued group” [Coleman, Diane, J.D. 2002. “Not Dead Yet,” in The Case Against Assisted Suicide—For the Right to End-of-Life Care. Ed. Kathleen Foley and Herbert Hendin. Baltimore: The Johns Hopkins University Press.]
International models, particularly the Netherlands, show that assisted suicide cannot be limited to a small, targeted group once Pandora’s box is opened.
At the end of this paper is attached a summary of the public policy reasons that DREDF and many other U.S. disability rights organizations oppose the legalization of assisted suicide and euthanasia.
Overcoming Internalized Oppression
The ripples of the ADA go much farther. Far more people today understand that identifying as a person with a disability is a positive thing to do, either for their own self-outlook, or because finally, after centuries of overwhelming disability disadvantage, people realize they have something to gain from that identity.
These victories and struggles are mirrored in the ebb and flow of attitudes about us. In May of last year , the New York Times Sunday Style section had a big article on people being more unabashedly “out there” with their disabilities; for example, joining in on the dance floor without bothering to cover up prostheses and artificial legs. It’s no longer rare for people with disabilities to project a self-image of, “I’m proud to be who I am. If you have a problem with it, you’re behind the times.”
Successfully reclaiming one’s positive identity as a person with a disability and dealing effectively with the other emotional challenges of disability demand what I’ll call an effective emotional practice that are not all disability advocates have found to their satisfaction. Peer support networks have been one key method of approaching these challenges.
Adolf asked me to include a mention of a peer counseling practice in which I have engaged for many years, Re-evaluation Counseling or Co-Counseling. It is not specifically for the disability community but does a good job of including people from every community without asking people to compromise their individual identities when they come in the door. Co-counseling is a practice that people can do in pairs, one counseling the other and then reversing roles, where the other counsels the first person. The practice focuses on emotional discharge – getting the difficulties off your chest – and it has an excellent approach to how early childhood experiences become the model for adult behavior patterns that are hard to break, and how to address them. It can provide an effective way to work on problems that come up, and clearly combats the various types of oppression in our societies, whether disability, race, class, gender, gay oppression, and so forth. You can find out more about it on the web at www.rc.org (the letters RC stand for Re-evaluation Counseling).
Moving Towards Action
I quote Frederick Douglass, an abolitionist leader who said in 1857,
Those who profess to favor freedom, and yet depreciate agitation, are men who want crops without plowing up the ground. They want rain without thunder and lightning. They want the ocean without the awful roar of its waters. This struggle may be a moral one; or it may be a physical one; or it may be both moral and physical; but it must be a struggle. Power concedes nothing without a demand.
Many people who are uncomfortable with being active, would, if polled, express enthusiastic support for the U.S. civil rights struggle in the '50's and '60's. They’re glad it happened, they think it had good results and moved our country forward. They are deeply inspired by Martin Luther King and Rosa Parks. [ … by the Freedom Riders, the lunch-counter sitter-inners, the capacity of the southern black community to take to the streets time after time, year after year, in incredible and growing numbers, for a then-seemingly impossible goal.] At the time, this movement raised a lot of questions about means versus ends. Now, even those of us who are uncomfortable with conflict, can look back at those heroic events, and admire. "What an exciting time in history that was! What an amazing opportunity to stand up for what's right! Had I been there, I would have stood up proudly."
In actual fact, history always presents us with such opportunities; each one of us. They're harder to identify now, when they're in the ordinary present, than the ones in the past, and that's partly because yesterday's militancy is less uncomfortable than today's. But in twenty years, when we look back with twenty-twenty hindsight, we'll wish we'd seized the opportunity to do something now that firmly put us on the right side of history.