• A Brief History: Attitudes and Treatment of People with Disabilities
• A Psychological View of Disability Culture, by Carol J. Gill, 1995
• Leadership by Persons with Physical and Sensory Disabilities in Disability and Self-determination Initiatives, by Carol J. Gill, 1999 (PDF)
  
• What is Disability?
• From Poster Child to Protester

A Brief History: Attitudes and Treatment of People with Disabilities

I. European Cultural Heritage

What is Disability?:

Background Briefing

The Definition of Disability Perspective of the Disability Community The questions of the definition of "person with a disability" and how persons with disabilities perceive themselves are knotty and complex. It is no accident that these questions are emerging at the same time that the status of persons with disabilities in society is changing dramatically. The Americans with Disabilities Act (ADA) is the cause of some of these changes, as well as the result of the corresponding shift in public policy. Questions of status and identity are at the heart of disability policy. One of the central goals of the disability rights movement, which can claim primary political responsibility for the ADA, is to move American society to a new and more positive understanding of what it means to have a disability.

Deborah Kaplan
Executive Director
World Institute on Disability

Disability policy scholars describe four different historical and social models of disability: A moral model of disability which regards disability as the result of sin; A medical model of disability which regards disability as a defect or sickness which must be cured through medical intervention; A rehabilitation model, an offshoot of the medical model, which regards the disability as a deficiency that must be fixed by a rehabilitation professional or other helping professional; and the disability model, under which "the problem is defined as a dominating attitude by professionals and others, inadequate support services when compared with society generally, as well as attitudinal, architectural, sensory, cognitive, and economic barriers, and the strong tendency for people to generalize about all persons with disabilities overlooking the large variations within the disability community."

THE MORAL MODEL is historically the oldest and is less prevalent today. However, there are many cultures that associate disability with sin and shame, and disability is often associated with feelings of guilt, even if such feelings are not overtly based in religious doctrine. For the individual with a disability, this model is particularly burdensome. This model has been associated with shame on the entire family with a member with a disability. Families have hidden away the disabled family member, keeping them out of school and excluded from any chance at having a meaningful role in society. Even in less extreme circumstances, this model has resulted in general social ostracism and self-hatred.

THE MEDICAL MODEL came about as "modern" medicine began to develop in the 19th Century, along with the enhanced role of the physician in society. Since many disabilities have medical origins, people with disabilities were expected to benefit from coming under the direction of the medical profession. Under this model, the problems that are associated with disability are deemed to reside within the individual. In other words, if the individual is "cured" then these problems will not exist. Society has no underlying responsibility to make a "place" for persons with disabilities, since they live in an outsider role waiting to be cured. The individual with a disability is in the sick role under the medical model. When people are sick, they are excused from the normal obligations of society: going to school, getting a job, taking on family responsibilities, etc. They are also expected to come under the authority of the medical profession in order to get better. Thus, until recently, most disability policy issues have been regarded as health issues, and physicians have been regarded as the primary authorities in this policy area. One can see the influence of the medical model in disability public policy today, most notably in the Social Security system, in which disability is defined as the inability to work. This is consistent with the role of the person with a disability as sick. It is also the source of enormous problems for persons with disabilities who want to work but who would risk losing all related public benefits, such as health care coverage or access to Personal Assistance Services (for in-home chores and personal functioning), since a person loses one's disability status by going to work.

THE REHABILITATION MODEL is similar to the medical model; it regards the person with a disability as in need of services from a rehabilitation professional who can provide training, therapy, counseling or other services to make up for the deficiency caused by the disability. Historically, it gained acceptance after World War II when many disabled veterans needed to be re-introduced into society. The current Vocational Rehabilitation system is designed according to this model. Persons with disabilities have been very critical of both the medical model and the rehabilitation model. While medical intervention can be required by the individual at times, it is naive and simplistic to regard the medical system as the appropriate locus for disability related policy matters. Many disabilities and chronic medical conditions will never be cured. Persons with disabilities are quite capable of participating in society, and the practices of confinement and institutionalization that accompany the sick role are simply not acceptable.

THE DISABILITY MODEL has taken hold as the disability rights and independent living movements have gained strength. This model regards disability as a normal aspect of life, not as a deviance and rejects the notion that persons with disabilities are in some inherent way "defective". As Professor David Pfeiffer has put it, "...paralyzed limbs may not particularly limit a person's mobility as much as attitudinal and physical barriers. The question centers on 'normality'. What, it is asked, is the normal way to be mobile over a distance of a mile? Is it to walk, drive one's own car, take a taxicab, ride a bicycle, use a wheelchair, roller skate, or use a skate board, or some other means? What is the normal way to earn a living?" Most people will experience some form of disability, either permanent or temporary, over the course of their lives. Given this reality, if disability were more commonly recognized and expected in the way that we design our environments or our systems, it would not seem so abnormal.

The disability model recognizes social discrimination as the most significant problem experienced by persons with disabilities and as the cause of many of the problems that are regarded as intrinsic to the disability under the other models. The cultural habit of regarding the condition of the person, not the built environment or the social organization of activities, as the source of the problem, runs deep. For example, it took me several years of struggling with the heavy door to my building, sometimes having to wait until a person stronger came along, to realize that the door was an accessibility problem, not only for me, but for others as well. And I did not notice, until one of my students pointed it out, that the lack of signs that could be read from a distance at my university forced people with mobility impairments to expend a lot of energy unnecessarily, searching for rooms and offices. Although I have encountered this difficulty myself on days when walking was exhausting to me, I interpreted it, automatically, as a problem arising from my illness (as I did with the door), rather than as a problem arising from the built environment having been created for too narrow a range of people and situations.

The United Nations uses a definition of disability that is different from the ADA: Impairment: Any loss or abnormality of psychological, or anatomical structure or function. Disability: Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.

Handicap: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal, depending on age, sex, social and cultural factors, for that individual. Handicap is therefore a function of the relationship between disabled persons and their environment. It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens. Thus, handicap is the loss or limitation of opportunities to take part in the life of the community on an equal level with others.

This definition reflects the idea that to a large extent, disability is a social construct. Most people believe they know what is and is not a disability. If you imagine "the disabled" at one end of a spectrum and people who are extremely physically and mentally capable at the other, the distinction appears to be clear. However, there is a tremendous amount of middle ground in this construct, and it's in the middle that the scheme falls apart. What distinguishes a socially "invisible" impairment - such as the need for corrective eyeglasses - from a less acceptable one - such as the need for a corrective hearing aid, or the need for a walker? Functionally, there may be little difference. Socially, some impairments create great disadvantage or social stigma for the individual, while others do not. Some are considered disabilities and some are not.

The following examples further illustrate the difficulty of defining disability without consideration of social factors: * A person who has a cochlear implant ; * A person who has a digestive disorder that requires following a very restrictive diet and following a strict regime of taking medications, and could result in serious illness if such regime is not adhered to; * A person with serious carpal tunnel syndrome; * A person who is very short. It is likely that different people could have different responses to the question of whether any of the above-listed characteristics would result in "disability", and some might say , "It depends".

This illustrates the differences in the terms "disability" and "handicap", as used by the U.N. Any of the above traits could become a "handicap" if the individual were considered disabled and also received disparate treatment as a result. Another example of the social construction of disability is when society discriminates against an individual who may have an "impairment" (in the sense of the U.N. definition) without a corresponding functional limitation. "The power of culture alone to construct a disability is revealed when we consider bodily differences - deviations from a society's conception of a 'normal' or acceptable body - that, although they cause little or no functional or physical difficulty for the person who has them, constitute major social disabilities. An important example is facial scarring, which is a disability of appearance only, a disability constructed totally by stigma and cultural meanings. Stigma, stereotypes, and cultural meanings are also the primary components of other disabilities, such as mild epilepsy and not having a 'normal' or acceptable body size."

The definition of disability in the ADA reflects a recognition of the social construction of disability, especially by including coverage for persons who are perceived by others as having a disability. The U.S. Equal Employment Opportunity Commission's ADA Title I Technical Assistance Manual provides the following explanations of how this prong of the definition is to be interpreted:

1. The individual may have an impairment which is not substantially limiting, but is treated by the employer as having such an impairment. For example: An employee has controlled high blood pressure which does not substantially limit his work activities. If an employer reassigns the individual to a less strenuous job because of unsubstantiated fear that the person would suffer a heart attack if he continues in the present job, the employer has "regarded" this person as disabled.

2. The individual has am impairment that is substantially limiting because of attitudes of others toward the condition. For example: An experienced assistant manager of a convenience store who has a prominent facial scar was passed over for promotion to store manager. The owner believed that customers and vendors would not want to look at this person. The employer discriminated against her on the basis of disability, because he perceived and treated her as a person with a substantial limitation.

3. The individual may have no impairment at all, but is regarded by an employer as having a substantially limiting impairment. For example: An employer discharged an employee based on a rumor that the individual had HIV disease. This person did not have any impairment, but was treated as though she had a substantially limiting impairment. This part of the definition protects people who are "perceived" as having disabilities from employment decisions based on stereotypes, rumors, or misconceptions about disability. It applies to decisions based on unsubstantiated concerns about productivity, safety, insurance, liability, attendance, costs of accommodation, accessibility, workers' compensation costs or acceptance by co-workers and customers. Accordingly, if an employer makes an adverse employment decision based on unsubstantiated beliefs or fears that a person's perceived disability will cause problems in areas such as those listed above, and cannot show a legitimate, nondiscriminatory reason for the action, that action would be discriminatory under this part of the definition.

The definitions within a statute are related to the purpose of the statute. This is especially relevant in the field of disability policy, as one can find many different statutes, all with different definitions of this term. The purpose of the ADA is to prevent discrimination and to provide a remedy for people who have experienced it. This is consistent with the disability model of understanding disability, which places great importance on discrimination as a major cause of disadvantage. In order to provide an appropriate remedy to the full range of individuals who experience discrimination based on disability, it is necessary to explicitly recognize that there are people who would not consider themselves "disabled", nor would they be considered so by most others, but who receive the same disparate treatment as "the disabled". The courts have had a difficult time interpreting this complex definition. There are numerous cases in which judges have treated the ADA definition as though the purpose of the law is to provide a social benefit, rather than protect an individual from discrimination. In some cases, the courts have placed an individual with a disability in a Catch-22 situation: if the individual has held a job, then this is proof that the individual is not disabled and therefore cannot use the ADA to seek a remedy for employment discrimination.

The notion that the ADA should only be used to protect persons who are somehow "truly" disabled reflects an unsophisticated or naive understanding of the nature of disability. Given the significance of social and cultural influences in determining who is regarded as disabled, it makes little sense to refuse to take these same influences into account. Another important issue related to the topic of the definition of disability has to do with disability identity. There are many persons who unarguably fit within the first prong of the ADA definition who do not consider themselves disabled. "...there are many reasons for not identifying yourself as disabled, even when other people consider you disabled. First, disability carries a stigma that many people want to avoid, if at all possible. For newly disabled people, and for children with disabilities who have been shielded from knowledge of how most non-disabled people regard people with disabilities, it takes time to absorb the idea that they are members of a stigmatized group. Newly disabled adults may still have the stereotypes of disability that are common among non-disabled people. They may be in the habit of thinking of disability as total, believing that people who are disabled are disabled in all respects. ...They may fear, with good reason, that if they identify themselves as disabled others will see them as wholly disabled and fail to recognize their remaining abilities, or perhaps worse, see their every ability and achievement as 'extraordinary' or 'courageous'."

The reason that so many people reject the label "disabled" is that they seek to avoid the harsh social reality that is still so strong today. Having a disability, even though the ADA has been in place for almost a decade, still carries with it a great deal of stigmatization and stereotyping. It is ironic that those who could benefit from the law choose not to do so because they wish to avoid the very social forces that this law seeks to redress and eradicate. People who may fall under the coverage of the ADA because of the presence of a genetic marker are certainly not likely to think of themselves as disabled. While there may be discomfort at the thought of coming under this label, it is worthwhile to recognize that no one with a disability, visible or otherwise, wants to experience the stigma and discrimination that is still all too common for those who society considers disabled. There are many others who do not consider themselves to be disabled but who do experience discrimination.

The ADA provides a legal remedy when this occurs. Since the ADA definition recognizes the social construction of disability, whether it can apply to a person is a function of the social treatment that the individual receives. In other words, the question of whether a person with a genetic marker is covered by the definition does not arise in the abstract. If the individual has experienced discrimination based on the individual's physical or mental characteristics, then that individual may take advantage of the ADA to redress that discrimination. The question of whether a group of people fits within society's concept of who might be disabled, or who is treated in the same negative way, is not an option that the group has the chance to select. No group of people would willfully opt to be treated disparately.

From a policy point of view, there are two possible options that could be pursued to avoid coming under the coverage of the ADA: (1) an amendment to the ADA to explicitly state that persons with genetic markers are excluded from coverage under the definition; and/or (2) separate legislation to redress discrimination based on genetic characteristics. The first option would operate like the proverbial phrase, cutting off one's nose to spite one's face. The possibility of genetic discrimination is quite real, and it would be a poor bargain to lose one's civil rights in exchange for avoiding disability based stigma. It could also cause significant problems with legal interpretation of the ADA definition; the risk is that courts could use any exclusion to deny ADA coverage to others.

The second option is also politically and legally fraught with risk. Politically, people with genetic markers are a much smaller group than the very large confederation of disability organizations and individuals who came together to work towards passage of the ADA. Thus, the chances of gaining the strong legal protections that are now available in the ADA are not very high. It could also be expected that well-financed corporate interests would oppose such legislation. Enactment of any new legislation would be a tough, uphill battle that would probably result in a compromised version of the original proposal. In addition, the existence of two overlapping pieces of legislation could result in unfavorable judicial interpretation.

For those within the disability movement who have no problem being identified as disabled, there are advantages to coming under the coverage of the ADA, and indeed to being part of a community that is actively working to eradicate the discrimination and stigma that are our legacy. After decades of disparate treatment with no meaningful legal protection or remedy, it is quite satisfying to fight discrimination and to stand together to reject the stigma and stereotypes that are the basis of disability-based discrimination. Most disability activists welcome the inclusion of persons with invisible disabilities, as well as those who have faced discrimination even though they have no real impairment. This is because we understand that freedom from injustice is not an entitlement to be doled out in small doses. The nature of disability discrimination is that it often has very little to do with the individual's capabilities and true characteristics. The stigma and stereotypes are the cause of the discrimination, much more than the disability itself. It could be argued that the disability per se is not the cause at all, that the social reaction to disability is the cause.

In seeking to avoid the stigma associated with disability, there is a choice of strategies. Social and legal activism that challenge the assumptions behind the disability discrimination address the issues head on. The goal is to eradicate the stigma. The decision to disassociate from those who have historically been stigmatized tends to perpetuate the stereotypes and discrimination. The disability rights movement is working towards a society in which physical and mental differences among people are accepted as normal and expected, not abnormal or unusual. We have plenty of methods and tools at our disposal to accommodate human differences should we choose to. Ironically, the growth of technology in our lives provides us with both the ability to detect more human differences than ever before, as well as the ability to make those differences less meaningful in practical terms. How we react to human differences is a social and a policy choice. We prefer to advocate for a social structure that focuses on including all people in the social fabric, rather than drawing an artificial line that separates "disabled people" from others.

 
From Poster Child to Protester
Copyright 1993 by Laura Hershey

[The following article appeared in the Spring/Summer 1997 issue of Spectacle, published by Pachanga Press, Burlington MA.]

Orange, pink, and lavender flyers fluttered in the breeze as we handed them to any passer-by willing to take one. "Tune Out Jerry!" the flyers urged. "Boycott the Telethon!" Some two dozen of us lined up in front of the hotel shouting chants, distributing leaflets, and answering questions from the media, while the local segment of the Jerry Lewis Labor Day Telethon broadcast from a ballroom two floors above. Though I would stay outside all afternoon, I remembered all too well the scene that was taking place inside.

The singers croon. The eyelids droop. The money pours in. The firefighters, the Boy Scouts, the business executives, the neighborhood kids, all tiredly smiling proud smiles, carry in their collected funds, in jars, in boots, in oversized checks. The camera rolls. The host smiles. The money pours in. The Poster Child gives awkward answers to inane questions. The host smiles. The Poster Child smiles. The host cries. The money pours in.

You have to keep thinking about the money, because as everyone freely admits, that's what this is all about. The money raised represents hope -- year after year, promises of a miracle, the great cure that waits just around the corner. The money manifests faith -- faith in the noble research scientists working desperately to identify, and eliminate, flawed genes. The money testifies to human love and compassion, ruthlessly sentimentalized in songs like "They'll Never Walk Alone" which punctuate the twenty or so hours of the telethon.

The money is what justifies, even sanctifies, this annual ritual of tears and guilt. In 1999 the telethon raised over $53 million. That massive amount of money that people -- young and old, rich and poor -- feel compelled to donate, giving "till it hurts," as Jerry Lewis insists -- that money makes it very hard to challenge what is actually going on.

But there we were, back in September 1991, on Denver's busy 16th Street Mall, challenging the Jerry Lewis Labor Day Muscular Dystrophy Telethon. Along with activists in cities around the country, including Chicago, Los Angeles, and Las Vegas, we were protesting the telethon's portrayal of people with disabilities as helpless and pathetic. We were asserting publicly that this colossal begging festival, supposedly carried out on our behalf, is offensive to us and damaging to our efforts to become first-class citizens. Our protests were small, but they would become an annual tradition -- much to the annoyance of Jerry Lewis and MDA.

For years we had been protesting against the barriers which keep people with disabilities from using buses, public buildings, and other facilities. Now we were taking on one of the biggest barriers of all: the paternalistic attitudes which prevail in our society, and which are reflected so dramatically in the annual telethon.

It is difficult to raise objections to something like the telethon; people are reluctant to disparage, or even entertain questions about, an effort which they perceive as fundamentally good, or at least well-meaning. That is understandable. It is an uncomfortable truth, in social work, in government activity, and in charitable endeavors, that actions which are intended to help a certain group of people may actually harm them. By harm, I mean -- among other things -- that these actions may reinforce the already devalued status of people with disabilities in this society. Looking closely and critically at the telethon, as some of us have started to do, brings up a number of issues which I feel are essential to understanding the status of people with disabilities as an oppressed minority group in America. These issues include: charity versus civil rights; cure versus accommodation; self-expression and self-determination; and the relationship between pity and bigotry.

The telethon has one goal -- to raise as much money as possible for the Muscular Dystrophy Association, or MDA. Conventional wisdom says that the most effective way to do this is to appeal directly to the emotions of viewers -- to move people so strongly, with stories of tragic suffering, that they will want to help "save Jerry's kids." Money is tight these days; charitable solicitation is a competitive business. Invoking sympathy sufficient to pry open wallets is not an easy task.

But those orchestrating the telethon have a foolproof, not-so-secret weapon: children. Never mind that two-thirds of MDA's 1 million clients are adults -- the telethon is not in the business of trying to represent the real lives of people with muscular dystrophy. That's not the point. The point is to paint a picture of a victim so tragic, and at the same time so cute and appealing, that viewers will be compelled to call in a pledge. This victim must also appear helpless, utterly unable to help him/herself, so that the giver can gain a personal sense of virtue and superiority from the act of giving.

Finally, the victim must display something called "courage," which does not resemble the bold, active kind of courage most people aspire to or at least fantasize about, in which one takes one's destiny into one's own hands and, by exercising will and choice, affirms oneself and/or one's place in the universe. No, the "courage" demanded in this instance is the willingness to deprecate oneself; to accept other people's versions of one's own reality; to reject one's own identity in favor of an eagerly anticipated cure (this is also called "hope"); to tolerate and even encourage the assumption that life with a disability is a life scarcely worth carrying on with, except for the generosity of Jerry Lewis and everyone involved in the telethon.

At the age of eleven, I was enlisted into this role of cheerful victim. I was a Poster Child. In 1973-74, I became a mini-celebrity, appearing at fundraisers throughout Colorado. I learned to smile whenever a camera appeared, and to say "thank you" -- in other words, I learned to look, sound, and act cute and grateful. And on Labor Day, I became a prop in the TV studio where the local portion of the telethon was broadcast. To whole families, driving by to drop their contributions in a giant fishbowl outside the studio; to the camera's blinking red light; to the anchorman who squatted next to me, holding a huge microphone in my face; to everyone, I gave the same cute-and-grateful act, because that's what they wanted.

So I am no stranger to the telethon. And in the two decades since then, the telethon doesn't seem to have changed much. I watch it every year, just to make sure. It's still chillingly familiar. The sappy music, the camera close-ups of wistful faces, the voice-overs telling us about that person's dream to walk someday, the tearful stories told by parents "devastated" by their children's disability, and the contributors coming forward in droves -- it was all just the same as I remember it.

But some things have changed; I have changed. I don't know what my politics were as an eleven-year-old, if I had any. But my politics now -- which are not merely political but also personal, spiritual, and practical -- have led me to question and ultimately reject most of the values which the telethon represents.

Let's start with the money. Does it help? Doesn't it make the stereotypes, the appeals to pity, the obnoxious on-air begging worth putting up with?

Yes, the money does help -- some people, with some things. We are talking about a lot of money here. MDA Executive Director Robert Ross asserts that during its 26-year history, the telethon has raised over $600 million. In 1999, the telethon raised over $53 million.

With all this money coming in, I would expect the direct services provided to people with neuromuscular diseases to be much more extensive, and more relevant, than they actually are. I would expect, for example, that when a person develops a condition which begins to limit his or her mobility, that MDA might come through with some money for access modifications to the home, so that the family wouldn't have to choose between moving to an accessible house (which are hard to find), or hauling the person up and down stairs all day. I would expect some support services for independent living -- someone to assist with personal and household needs, training in things like cooking and cleaning from a wheelchair, and help with transportation. I would expect MDA to provide a motorized wheelchair for anyone who wants one. Such a chair can boost a disabled person's quality of life enormously. Instead, MDA has very restrictive criteria for determining who receives a motorized wheelchair.

Far be it from me to advise a multimillion-dollar agency on how to spend its money. But when the telethon tells viewers that by donating money to MDA, they are answering the prayers of people with MD -- offering them a friend to turn to in times of need -- it exaggerates.

Okay, say the defenders of the telethon, so maybe the money doesn't help people now as much as it should. Isn't it still laudable that the telethon raises so much money to help find a cure?

Ah, the cure. That's the promise that keeps people sending in those checks. That's what keeps this humiliation going year after year. We're getting closer all the time! Jerry Lewis assures us frenetically. He's been saying it for four decades.

Shortly after my stint as Poster Child was over, I remember meeting a stranger in a store who recognized me from the telethon. He said to me, "I bet you really hope they find a cure soon!" When he said this, I realized that by this time, I almost never even contemplated that possibility anymore, let alone hoped for it. I told him that. I don't think he believed me. I find the same reaction now, when I criticize the telethon for implying that people with disabilities sit around hoping and praying for a cure. I've encountered people who, never having tried it, think that living life with a disability is an endless hardship. For many of us, it's actually quite interesting, though not without its problems. And the majority of those problems result from the barriers, both physical and attitudinal, which surround us, or from the lack of decent support services. These are things that can be changed, but only if we as a society recognize them for what they are. We'll never recognize them if we stay so focused on curing individuals of disability, rather than making changes to accommodate disability into our culture.

Now, I'm not arguing that medical research should halt entirely -- I'm just weighing the cost-benefit value, in my life and in the lives of my friends with disabilities, of the millions of dollars spent on the search for a cure, a search that will take decades, versus the things we really need now, on which society spends far less. We will probably never benefit from the cure. We will benefit from accessible buildings and transportation systems, job opportunities, and attendant services to provide us personal assistance. So will future generations.

We have begun making progress in those areas. In 1990, for example, the Americans with Disabilities Act became law, putting some legal teeth into our fight for civil rights and access.

But for all our progress in the areas of legal protection and accessibility, there's still this lingering attitude that what people with disabilities really need is to be cured. Society wants the problem to go away, so it won't have to accommodate people with long-term disabling conditions. It wants us to go away, or at least to "get better." One of my major objections to the telethon is the way it reinforces that attitude.

Sure, some people with muscular dystrophy do hope and dream of that day when the cure is finally found. As people with disabilities, we're conditioned just like everyone else to believe that disability is our problem. We've been told over and over that our need for accessibility to buses and buildings, and our need for health services, are too expensive, too unreasonable. Our culture considers it shameful to be physically unable to dress oneself, or to need assistance in going to the bathroom. Rather than demanding that the government provide such helping services, many people with disabilities end up hidden in nursing homes or in our own homes, where personal assistance remains the private "burden" of individuals and families. Rather than insisting on having our personal needs and our access needs met, many prefer to keep quiet about these needs, fearful to show ourselves lacking. The telethon itself encourages such self-defeating thinking. We are primed to regard ourselves as substandard. We therefore hesitate to assert our right to have that which, because of our disabilities, we need. The telethon teaches us to think that others will provide for us because they are kind and generous, not because we are a strong and vocal community. When so many of us feel so negative about our disabilities and our needs, it's difficult to develop a political agenda to get our basic needs met. The cure is a simple, magical, non-political solution to all the problems in a disabled person's life. That's why it's so appealing, and so disempowering. The other solutions we have to work for, even fight for; we only have to dream about the cure.

The idea of a cure is at least in part an effort to homogenize, to make everyone the same. To draw a parallel, when I was a child and first learned about racial discrimination, I thought it would be great if people could all be one color so we wouldn't have problems like prejudice. What color did I envision for this one-color world? White, of course, because I'm white. I didn't bear black people any malice. I just thought they'd be happier, would suffer less, if they were more like me.

We all have our own ideas about which human condition is best, based on our own assumptions about other people's lives. These assumptions don't always jibe with reality. People who assume that I live for the day when a cure is found, when I (or future generations) can live disability-free, simply don't understand my reality. It's a question of priorities. On the list of things I want, a cure for my disability is pretty low. Higher up on the list would be achievement of my personal, professional, and social goals, and these are not in any way dependent on a cure.

Besides, there's an issue of pride involved. Disability is a part of my whole identity, one I'm not eager to change. Especially not at the cost of my dignity and personhood, as the telethon implicitly demands.

This gets to another important issue the telethon raises in relation to the oppression of people with disabilities: Whose job is it to tell the story, or stories, of a group of people? The telethon is full of "profiles" of people with various forms of muscular dystrophy and their families. Yet these stories are packaged as products, not told as truth. Favorite subjects are children, for reasons discussed earlier -- children can be made to appear more helpless, more pathetic, more dependent on the public's generosity. Children are also cute; therefore they seem more deserving of help.

In comparison with my telethon years, recent telethons do profile more adults with muscular dystrophy. Some are successful, competent adults. Yet somehow, even these individuals were made to look desperate and pitiable.

On any given telethon -- both on the national broadcast from Las Vegas, and during the cut-aways to local segments -- you will see profiles of children and adults with muscular dystrophy. These spots are all fairly similar in tone and emphasis. As if by a prescribed formula, each one contains several key ingredients. In each, the parents speak about their reactions upon hearing their child's diagnosis -- even if, as in most cases, this has occurred years, or even decades, before. Naturally, these reactions include disbelief and grief. Yet there is rarely any discussion of how (or whether) the family has since come to accept the knowledge of their child's condition, to find resources (other than those offered by MDA), to plan for the child's future, or to promote the child's self-esteem. The situation is presented as an unmitigated tragedy.

I'm suspicious of this presentation. I'm not trying to minimize the pain a parent might feel upon learning that a child has a disabling, potentially even fatal, diagnosis. There is a very natural grieving process that goes along with disability at any stage. But when I see those emotions exploited so crassly, I can't help wincing. For most of us, our losses, gains, sorrows and joys are simply part of a rich human life. The telethon works very hard to convince people that our suffering is extraordinary. This produces pity, confusion and misunderstanding.

Another common element in these pieces is the emphasis on "what Johnny can't do." A child, usually a boy, is shown sitting at the edge of a playground. The narrator talks about the games the child can't play, and how he has to watch other children running and jumping. He can only dream, the narrator tells us sadly.

Never mind that the kid might be adept at playing Nintendo, or making rude noises with his mouth. In the real world of children, these skills are valued at least as much as running and jumping. The truth is, all children play at different levels of skill; most can't run as fast as they would like, or jump as high, or play as well. Children in wheelchairs do play with other kids on the playground -- I did. A child in a motorized wheelchair can be mobile, active -- and popular, if willing to give rides now and then. But instead of acknowledging any of this, the telethon encourages viewers to project their own worst fears onto people with muscular dystrophy: "Just imagine what it would be like if your child couldn't play baseball."

Finally, each piece puts forward an archaic and gloomy picture of the disabled family member's role, and of the role of the family in a disabled person's life. All the families are described as "courageous"; and they all seem to bear total responsibility for the care and support of the person with MD. Spouses and parents alike are shown carrying the person with MD up and down stairs, pushing their wheelchair, and so on. Rarely if ever is the disabled family member shown making any positive contribution. In these stories, the disabled person's status is clearly (even if the word was never used) that of "burden."

I am all for supportive families. My own parents and brother have stood by me throughout my life, backing me with assistance and encouragement. But I have also built a life apart from them. Many people with disabilities do so, getting educated, working, and having families of our own. I am able to live independently, working toward the goals I choose, as long as I have access to the support services I need -- primarily attendant services. I am lucky that the state of Colorado pays someone to come to my home and help me get up in the morning and get to bed at night. Most states do not offer this service, forcing people with disabilities to remain in the care of their families, or to enter nursing homes. Indeed, attendant services is the number one disability rights issue of the 1990's. Activists are demanding that the federal government divert a part of the huge budget which currently subsidizes the nursing home industry, and create a national system of attendant services, available to anyone who needs them.

On the telethon, of course, this is a non-issue. Disability is a private problem, demanding faith and fortitude from families, demanding generosity from viewers, demanding nothing from the government, or from society as a whole. If the need for personal assistance is mentioned at all, it is only to highlight, once again, the purported helplessness of people with MD, as in phrases such as "totally dependent on others for the most basic activities the rest of us take for granted." In fact, the opposite is true: With decent attendant services at my disposal, I become more independent, not more dependent. But to present that truth might undermine that vision of the long-suffering, burden-bearing family.

The unvarying tone and content of the pieces made it difficult to distinguish one "patient" from another. The profiles put forward a stereotyped view of what it means to have a disability, rather than any genuine stories of real people. We are all individuals, and families are all different. Not on the telethon, though. There we are made to fit the mold. Even the language used on the telethon distorts our reality and thereby dehumanizes us: We are "victims," we "suffer" from our conditions, we are "desperate."

I have firsthand experience of this distortion effect. Six or seven years after my Poster Childhood was over, just before my second year of college, I was asked to be interviewed for a local pre-telethon TV special. At first I said no. I was by now quite leery of the telethon mentality. I had also started becoming politicized, and was now more interested in civil rights than in charity. And I couldn't see any reason to participate once again in the simple-minded propaganda I remembered from my on-camera appearances as Poster Child. Back then, I had been asked questions like, "What would you like to say to all those nice people who are calling in their pledges, Laura?" to which the obvious reply was, "Thank you." Such questions left little room for honest expression.

But the local MDA office promised that the interview would be handled differently in this program: The plan was to take a positive, realistic approach and portray the real lives of three real people. So I agreed.

A TV news reporter conducted the interview in my parents' home. She asked good questions and allowed me to give complete, intelligent answers. It was certainly a different process from my earlier experiences. Afterward, I felt good about the upcoming show. I had been able to discuss issues, describe my life as a college student, and project a strong, positive personality.

Or so I thought. When the program aired, I was horrified. Through careful editing, it had turned into a sob story entitled "Waiting For A Miracle." From that point on, I vowed to have nothing to do with the telethon.

Until 1991, that is. I learned that two Chicago activists, Chris Matthews and Mike Ervin, were interested in coordinating actions against the Jerry Lewis telethon. Like me, they were both former poster children. I urged people from Denver's community to join the campaign. My decision to organize a protest did not come without some thought. In fact, I had for years contemplated doing something like this, but had not. I knew that our message would not be an easy one to convey to the public. Many people are involved with the telethon, either as volunteers or as contributors. I knew that openly criticizing it would cause confusion and anger. The telethon enjoys widespread acceptance, even acclaim.

But that is exactly why it's so important, I feel, to raise our voices against it. Because it is accepted as our reality. This is my biggest gripe against Jerry Lewis, and against the telethon: the extent to which they claim to tell my story, our stories, without any legitimate authority to do so.

The telethon's hegemony over the image of disability is quite staggering. A 1996 press release issued by MDA states, "According to A.C. Nielsen, last year's Telethon was watched by some 70 million Americans or 27 million households. The MDA Telethon -- considered the granddaddy of all Telethons -- ranks in viewership with the World Series and the Academy Awards. " Those 70 million people are absorbing a message shaped by greed, deception, and bigotry.

The bigotry of Jerry Lewis is worth discussing. I don't necessarily enjoy attacking another person's motives, but I hear defenders saying, "Jerry Lewis is trying to help so many people. How dare you criticize his methods?" This means-justifies-the-ends argument has a long and despicable history, which I don't need to go into here. Even more dangerous is the attitude that people who are "being helped" have no right to say how they want to be helped, or treated, or thought of. This is paternalism at its worst. By being the object of charitable efforts, do we thereby waive our right to respect, and to free speech? If people are really interested in helping me, wouldn't they want to hear me tell my own story, rather than hearing a distorted version of it from someone who not only doesn't share my experience, but who doesn't even seem to want to listen to me? With the stated goal of "helping" his "kids," Jerry Lewis is helping to keep alive the most pernicious myths about people who have disabilities. He ignores our truth, substituting his own distorted assumptions.

If our protest did nothing else, it allowed some of us the opportunity to say, "No, this is not our reality. If you want to know what our lives are like, listen to us. If you want to know what we need, ask us. If you truly want to help us, let us tell you how. And if you pity and fear us, please own that; then let us work together at changing the world so that disability will not be something to fear, but something to try to understand."

The response to our protest has been interesting. Many people seem to resent our daring to object to these distortions, half-truths, and stereotypes. I have been called "ungrateful," "cruel," and "insensitive" -- simply for trying to counter all this with the truth, with my truth. At the very least, I feel that the protest has enabled me and others to begin getting on record our own stories, in contrast to the misleading accounts that come from the telethon.

Media is a powerful thing. It can deceive, or it can enlighten. About a week after that 1991 telethon, a publication arrived in my mailbox called MDA News Magazine, put out by the national Muscular Dystrophy Association office. I started to leaf through it, expecting to find the same kinds of negative stereotypes that permeate the hours of the telethon. Instead, I found articles about job-seeking strategies; profiles of successful individuals who have neuromuscular diseases; honest and thoughtful pieces about families of children with neuromuscular diseases; lists of useful resources; and clinical updates. All of it was written in a positive, realistic tone, using respectful and appropriate language. The phrase "people with disabilities" was used at all times -- never "victims," or "sufferers," and certainly not "cripples."

One article, written by Marie Hite, whose son has muscular dystrophy, stood out. Its basic theme was very similar to some of the telethon spots I had viewed: the difficulties a child has in coping with a progressively disabling condition. But Hite's treatment of the subject couldn't have been more different from that presented on the telethon. In her article, her son confided that he could no longer climb a neighbor's tree; he asked his mother for an explanation. She replied that his muscles didn't work the same as other children's.

Whereas the telethon would have used this situation to create pity, this article used it to tell a touching, upbeat story. In it, the focus was not so much on how the boy differs from other children, but on how the author helped her son understand his disability, and on his own resourcefulness in adapting to it. The grief was not denied, but neither was it overdone.

Tears instantly flowed down Petey's cheeks. 'But, Mom, I want to climb trees, too,' his voice pleaded.

Silence....

What to say?...

I let him know that it was OK to feel sad, and I stayed with him.

Five minutes later, he was OK again.

'Petey, I'm going to help you climb Mrs. Kurly's tree when I get home from work,' I said. His face lit up....

Her conclusion emphasized the boy's fundamental similarity to other children in struggling to understand and come to terms with himself and his world:

He had accepted his limitation as only a 6-year-old can, with childish grace and fantasy.

There are limits -- and tree trunks -- that love, with a little ingenuity, can rise above. Like other 6-year-olds, Petey just wanted to play in the tree.

In Hite's piece, Petey got what he wanted, with some assistance and adaptation; in fact, this describes fairly well how most people with severe disabilities live -- with assistance and adaptation. Petey was portrayed as a real child, full of humanity. What a different view from that to which telethon viewers are exposed annually!

I was impressed by the sophistication and sensitivity of the writing in this magazine -- but also a little baffled. How could the same organization that edits this publication, with its realism and insight, also produce the Jerry Lewis telethon? They know better! I thought.

Then I realized the reason for the apparent split personality within MDA. I was seeing two very different presentations, intended for two very different audiences. The magazine is aimed at people with neuromuscular diseases and their families. I commend MDA for offering their clients such a high-quality forum for education, information, and the sharing of experiences.

However, I am dismayed that when it comes to informing the general public, MDA chooses to take the opposite approach. Does the organization fear exposing potential donors to the truths revealed so eloquently in its magazine? Does it foresee a decline in contributions if nondisabled people start to see people with disabilities as we really are? Is respect and awareness bad for the bottom line? Is raising consciousness incompatible with raising money?

Images of people with disabilities sink into the public mind every Labor Day, images of helplessness and eternal childhood. We see children frolicking at summer camp, while an announcer tells us how miserable those children are the rest of the year. We hear tear-jerking stories from parents lamenting their child's condition. Pity is the name of the game in telethonland. Pity brings in big bucks.

So what's wrong with that?

Pity is a complex and deceptive emotion. It pretends to care, to have an interest in another human being. It seems to want to take away pain and suffering. But if you look at pity up close, you notice that it also wants to distance itself from its object. A woman calls in a pledge and boasts, "My two children are perfectly healthy, thank God!" Pity does not share another's reality, only remark upon it.

Pity can be very hostile to the achievement of equality and respect. If you feel sorry for someone, you might pledge a donation, but you are not likely to offer them a good job, or approve of them dating your sister or brother. If emotions were to be grouped into families, pity has some rather unsavory kin. On this emotional family tree, pity is very close to -- sometimes indistinguishable from -- contempt and fear, which are uncomfortably near to hatred.

That might sound like a strong statement. But I would argue that any reaction which creates separation and inequality between people -- which pity certainly does, however benevolent it might appear -- is destructive. People cannot live together in community, recognizing and respecting each other as human beings, if one group feels superior to the other for any reason.

Pity paves the way for paternalism, for the attempt to control people on the basis of disability. I have lived with the implications of this reaction, this assumption that I am less able to, have less of a right to, run my own life. I saw it in the eyes of the high school journalism teacher who didn't want me in her class. I see it on the faces of people who pass me on the street, and wonder (perhaps) what I am doing out in public.

Of course, many experiences and many emotions go into the formation of bigotry. I cannot blame all discrimination on pity. Nor can I blame all tendencies toward pity on the Jerry Lewis Telethon. But we need to analyze the way this annual event capitalizes on, and feeds, those tendencies. We need to ask ourselves whether all that money, tracked exuberantly on those giant tally boards, is worth it.

I say it's not.

The effects of our protests on the Jerry Lewis Labor Day Telethon have been mixed. It has become a TV show with a split personality.

Beginning with the 1992 telethon, we began to see some changes from previous years. We saw lawyers, accountants, teachers and journalists with muscular dystrophy, receiving recognition as winners of Personal Achievement Awards. We heard the words "dignity" and "self-respect" used over and over, sometimes in strange contexts -- as in "Please call in your pledge to help us save these kids' dignity and self-respect." We heard talk about the Americans with Disabilities Act and the need for a personal assistance program.

But we also saw the old familiar scenes: tuxedo-clad local hosts sweating and beaming, well-groomed two-parent families poised to look brave and desperate, Jerry Lewis mugging and weeping.

The Muscular Dystrophy Association has consistently, obstinately refused to acknowledge the validity of our concerns. Marshalling all its defenses, MDA feverishly protects the decades-old tradition. Those of us identified as the telethon's chief critics continue to be told how ungrateful, unreasonable, vicious, and emotionally disturbed we are.

Yet we'll continue to critique this twenty-plus-hour-long epic. It's a microcosm of so many of our society's attitudes towards disability. It's the details which, for me, sum up the telethon perfectly -- both its attempts to change and its intrinsic flaws.

A few examples:

The telethon has often featured a Florida woman named Shelley, an obviously intelligent person with a graduate degree and a professional career. In one typical segment, Shelley and her mother were both interviewed about their hope for a cure for muscular dystrophy. Her mother raised one hand a few inches and, near tears, said something like, "If only she could do this, that would be all I would ask for her." While other mothers wish for their grown children to have personal happiness, professional success, and a family, the telethon encourages the belief that the mother of a disabled adult can only hope for one thing -- either total or partial cure.

The mother also stated that she is afraid to leave Shelley at home alone, because she can't use the telephone, or answer the doorbell, by herself. I had to wonder why Shelley did not have access to the relatively simple and inexpensive devices now available, such as hands-free telephones, and doorbell intercoms.

This scene was typical of several telethon segments: In presenting an individual with a neuromuscular disorder, the focus would be on functions the person couldn't do. When I see a story like that, I start this mental process of problem-solving -- thinking about adaptive equipment, attendant services, access modifications, etc. -- things which could help the person function more independently.

But apparently, the general public takes these things at face value: If Shelley can't answer her own telephone, the only possible solution is to cure her disability.

The telethon certainly doesn't encourage viewers to think of other options. If the person can use equipment and personal assistance to live more independently, then viewers may not feel as sorry for her.

There was another vignette about a family with two sons, one of whom has MD. In focusing on the younger, non-disabled son, the narrator made a statement to the effect that he doesn't have a big brother who can take him places and teach him things -- he has a brother he has to take care of.

This statement implies that people with disabilities are incapable of giving to any kind of relationship, that we are undesirable even as siblings. (The telethon also promotes the idea that people with disabilities are miserable parents: Fathers and mothers are shown passively watching as their kids run and play, as if someone in a wheelchair could never provide children with affection, discipline, or moral or financial support. And forget any notion that people with MD can be sexual. The telethon presents even spouses as caretakers, not lovers. The denigration of our potential for relationships is perhaps one of the most dehumanizing and negative aspects of the telethon.

The next day, a different family appeared on the local segment of the telethon. Like the first family, there were two teenage boys, one, named Paul, with MD. The brothers were obviously very close. Again, the host made a major point of talking about how the non-disabled boy "takes care of" and assists his brother Paul. At this statement, the father leaned over to the microphone and said pointedly, "Paul helps him a lot too."

The host ignored this attempt to set the record straight, but I was very moved by it. I feel real compassion for people like that family, who participate in the telethon, yet try (usually in vain) to preserve their own dignity and truth.

MDA representatives have stated again and again that pity works, it makes people give money. They might be willing to change a few things, add some references to the ADA here and there, recognize some "achievers" with MD. But they are not about to tone down, in any significant way, their appeals to pity.

We can take credit, though MDA would never acknowledge it, for the changes that have occurred -- they are certainly a direct result of our criticism and protests. But we have to increase the pressure, keep raising awareness, and stop this annual insult once and for all.

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