Part of understanding persons with disabilities is knowing who is not to be considered disabled. Marta Russell has something to say about the word, “normal,” and the term, “nondisabled,” and I have a greater understanding of those words because of her. The struggle between nondisabled persons and persons with disabilities, for understanding of disability, is partly reflected through events like the Jerry Lewis Labor Day Telethon. In this section I present a statement by Mr. Lewis, and responses from disability culture leaders. I write my own opinions on these issues, as well as my opinions on the medical model of disability, but I begin with a small understanding of what the well-being of persons with disabilities might be.

Without health, or well-being, of the body, mind and spirit, equal participation in the world is not a possibility. Effort to ensure the well-being of the body, mind and spirit of persons with disabilities results in greater participation by them, and more opportunity for society. All persons, disabled and nondisabled, must have healthy minds, bodies and spirits in order to be well and happy in society. The many challenges that persons with disabilities face make well-being of body, mind and spirit all the more important.

In Beyond Ramps, Marta Russell approaches the topic of, ‘normalcy,’ from the start of her book and states:

“Physicalism is rating an individual’s social value solely on his or her muscular, sensory, and/or mental prowess. When people do not run and jump, are blind or deaf, and do not exhibit able-bodied standards of physical or mental competence, nondisabled and some disabled people themselves perceive this as a “less than” situation. These differences are interpreted as negatives, as “not normal” and therefore, not desirable.”

(Russell, 1998)

When the term, ‘nondisabled,’ first emerged as a term to be used to put persons with and without a disability on a more equal ground, there was some confusion on the part of nondisabled persons, who did not understand this new reference to them. Some persons without disabilities still do not understand this new word, and probably won’t until, like any new word, it gains in social use. I use and enjoy using the word, ‘nondisabled,’ because it does put people on a more equal ground.

I agree with Marta Russell’s description of physicalism, and I appreciate her pointing out that the nondisabled population uses the word, ‘normal,’ to describe itself. I can understand why she has placed an emphasis on what she sees as the physical part of disability, and I am glad that she has used the word, ‘nondisabled,’ in her book. In my own understanding of what nondisabled means there is more.

A nondisabled person is someone without a physical or mental disability, or someone who is not perceived as having a disability. A nondisabled person can participate in society to the same degree that the majority of the population does. It means that a person can live her daily life without fear that others will treat her differently because she is physically different, or behaves differently. Nondisabled status means that a person will not live an impoverished, demoralized life on the fringes of society because of a physical or mental difference.

Nondisabled persons do not have a physical or mental condition that leaves them financially dependent on family, friends, the state or the federal government. Nondisabled persons are not eligible for city, state, or federal assistance programs that are in place to assist disabled persons. Persons who are nondisabled do not have to worry about having their physical or mental health disorders stigmatized daily on television programs. One of the biggest advantages of being nondisabled is that one doesn’t have to worry about having a physical or mental condition that leaves one’s body, mind and spirit sick and without hope for a better day.

Nondisabled persons are eligible for jobs that the majority of people are eligible for. They can do everything from temporary office work to salaried management, and all they have to worry about is their education level. Nondisabled persons don’t have to worry about having a physical or mental condition that keeps them from being hired in the first place, or being kept from advancing to a higher position due to stigma and prejudice. Nondisabled persons don’t have to worry about being the subject of the charitable organizations that their company supports.

Nondisabled persons do not have the same hurdles of body, mind and spiritual health to get through on the way to the starting area of looking for work or happiness. Nondisabled persons do not have to concern themselves with daily living with a physical or mental disability, and they do not have to live with the daily stigmatization of their physical or mental existence. While nondisabled persons do have to live with the regular daily ups and downs of living, they do not have to live through all the additional challenges that people with disabilities do.

Marta Russell also says in Beyond Ramps:

“The issue is not what causes disability but the reaction to it. Disability is often treated as though it were a deviation from the rule. In fact, it is not an anomaly. One out of five persons in the U.S. has an impairment, yet disability is perceived as an, “oddity,” rather than as a natural occurrence…The danger of the, “normal,” construct is that it serves to make disabled people seem less than human. When disabled people are not seen as fully human, it is easy to justify continuing inhumane policy towards us, to cut us out of the social contract, even to eliminate us at political will. We become too easily disposable.” (Russell, 1998)

The word, ‘normal,’ is an enemy of every person with a disability, and is loaded with connotations of who is acceptable and who is not. ‘Normal,’ creates a barrier between persons who have a disability and persons who do not. ‘Normal,’ divides families, keeps neighbors from talking to each other, dictates who can serve our country through various offices, and diminishes our social potential.

The word, ‘nondisabled,’ still divides persons into, ‘us and them,’ groupings, and reminds us all that there are differences between persons based on mental or physical aspects. ‘Nondisabled,’ also places everyone on the, ‘disabled’ level, reminding us all that disability can happen to anyone, at any time, and that we will all age if nothing happens between now and then. The word, ‘nondisabled,’ also closes the social gap between persons with and without a disability by using a common word, ‘disabled’. ‘Nondisabled,’ places the emphasis on, ‘disabled,’ instead of on, ‘normal’. (Russell, 1998)

Perceptions of what is, ‘normal,’ have created two social constructions of disability that are equally horrid in their actions and appearance. The first of these two constructions is the charity/pity model of disability. Perhaps the prime example of the charity/pity model is the Jerry Lewis Muscular Dystrophy Telethon. The telethon uses children with disabilities to raise money for the Muscular Dystrophy Association; it uses children to tug at the heartstrings of millions of viewers, both individuals and corporations. The telethon portrays persons with disabilities as, ‘needy,’ and, ‘unable to care for themselves.’ In an unbelievably hateful statement, Jerry Lewis said:

“I decided after forty-one years of battling this curse that attacks children of all ages, I would put myself in that chair, that steel imprisonment that long has been deemed the dystrophic child’s plight. I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I’m not as fortunate as they are. I’d like to play basketball like normal, healthy, vital and energetic people. I really don’t want the substitute. I just can’t half-do anything. When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person.” (Johnson, 1994)

Mr. Lewis managed to squeeze in every one of the most offensive statements that could possibly be made to a disability rights activist in one paragraph; I am amazed at the negative tone he presents through his actions. The charity/pity ploy of his description was echoed through millions of television sets around America, promoting the misconception that persons with disabilities cannot take care of themselves, or do anything meaningful. America’s perception of persons with disabilities is due in very great part to the charity/pity social constructions of persons like Mr. Lewis. I can’t help but wonder how much of the telethon’s take ended up in Mr. Lewis’ pocket.

Laura Hershey, a disability rights activist of note, responded to the telethon by saying:

“My basic objection to the telethon is that it encourages us to mourn again and again; that it reinforces the message that being disabled is not okay; that it implies that disabled people should get what they need through charity, not as a matter of right; and that it discourages us as a society from accepting disability and seeking to accommodate it permanently into our social fabric. The disability rights approach views disability as a natural phenomenon which occurs in every generation, and always will.”

(Johnson, 1994)

I think that Laura Hershey is right on the money, and that charity/pity models in society are related very closely to the type of thought that has promoted euthanasia and institutionalization of persons with disabilities in America. The Jerry Lewis Telethon is as disgusting to me as Oregon’s euthanasia law or mental hospitals that do not provide the care they are supposed to. The second social construction I will mention is the medical model of disability.

In the medical model of disability, all disabilities are viewed from the medical perspective only. The medical model does not see disability as a naturally occurring part of human life, one where persons with disabilities are citizens like any other. The medical model of disability sees a disability as a problem that must be treated or cured. Persons with disabilities, like any other persons on Earth, have medical needs; the medical model emphasizes those needs beyond their being just a part of a person to their being the whole of who a person is.

The medical model of disability not only imprisons persons with disabilities in places like nursing homes and institutions for specific health disorders, the model fights with itself over the funding to, ‘care,’ for people. Pamela Erickson, of Milwaukee, Wisconsin, has scoliosis, and uses a form of cart inside of a nursing home. She needs a specialized wheelchair that costs $4,000; but Medicaid will not buy it so she uses a makeshift cart to move around the nursing home. Joseph Shapiro in, No Pity, states:

“Her only other trips out of the home have been to a hospital; because she spent day after day without sitting up, Erickson developed intestinal blockages. Medicaid, which denied her the chair she needed, paid for four costly hospitalizations to correct her resulting health problems.” (Shapiro, 1994)

The medical model of disability has founded nursing home after nursing home, hospital/institution after another, only to make senseless financial decisions that end up harming people instead of enabling them to become working, happy, taxpaying, family raising, and friendship gaining people. There are large numbers of people who should be living in society with everyone else instead of suffering in nursing homes and hospital/institutions. The medical, ‘care,’ they receive is appalling, the funding allocations to support them are spent in asinine ways, and society is losing out on the contributions these persons with disabilities could be making. I suggest that America drop outright both the charity/pity and the medical models of disability in favor of an Ability model.

An Ability model is a model of all people, with or without a disability. The model asks, “What are you able to do?”, and works with people to enable themselves and each other. Looking at the current medical and charity/pity models of disability, I cannot believe that somebody somewhere hasn’t questioned their competency. The sooner we move on to an Ability model, the better.

For a person with a disability, life is often limited by negative social constructions, stigma, and poverty. These things can freeze a person’s will to engage life, to live in society to the best of her ability, or to see herself as a person who can do, create, dream or live happily. I think that personal mastery can be a tool for persons with disabilities to use. Personal mastery, with its focus on where you are now, where your real dream is, and the creative tension in-between, is a way of living that anyone who is not living to the best of her desires can practice. I believe that looking within yourself for a vision of what you want, recognizing where you are now, and practicing using the opportunity for creativity that comes from the awareness of both, would help many persons with disabilities live a fuller, happier, more content life. (Senge, 1994)

The creative outcome of personal mastery, with its application to living well, promotes the ability of anyone to lead, either on personal or group levels. With the ability to lead, persons with disabilities can help to guide their own futures. Persons with disabilities should pursue leadership from among themselves; here is an example of why.

Occasionally, groups of nondisabled persons get together to try and understand persons with disabilities. One of the ways that they attempt to do this is through putting cotton in their ears to mimic a hearing impairment, or tying a handkerchief around their eyes to mimic blindness. Some nondisabled persons sit in a wheelchair for an hour or so to mimic what they think it must be like to use a wheelchair. Some of these nondisabled participants go on to manage offices, or other worksites, where people who actually have a disability work. All of them leave the, “disabled for a day,” exercise with erroneous impressions of what disability is like, and use those impressions in their interactions with persons who are actually disabled.

The problem with some person’s exercise of, “disabled for a day,” is that the disabilities they are trying to mimic are just – fake. After the hour-or-so long exercise, they take off the handkerchief, pull out the cotton from their ears, and get up from the wheelchair they have been sitting in. My point is simply this: there is absolutely no way a nondisabled person can understand what it is like to be deaf, blind, paralyzed or have any other disability twenty-four hours a day, every day, all year, all the time. Nondisabled leaders in disability related areas of work may be very dedicated, but they also have no experience in the day to day living of disability.

Not so long ago, I saw a video device that the Seattle Police Department was using in order to mimic what people who have Schizophrenia must be experiencing.

(Corry, 2002) I can appreciate that the police are trying to better understand persons with this mental health disorder, but it looked so much like a Nintendo video game that any sense of reality was removed. The police in Seattle have shot and killed at least one person with Schizophrenia, and the officers who did the shooting faced no charges. The Police have also fire-hosed someone with Schizophrenia on a downtown street in a fashion reminiscent of racist treatment of Black Americans in the past. I think that the Seattle Police Department needs to work with disability leaders from within the mental health disorder community, and find out how to work with disabled offenders. (Fryer, 2000) (Keene, 2002)

Leadership from within the disability communities in America could provide realistic, recent information on living with a disability in our country. Disability leadership could promote organizations that assist persons with disabilities without nondisabled bias. The nondisabled portion of America’s population is clearly incapable of understanding what disability is to the extent that persons with disabilities are. I believe that increased disability leadership is an important part of gaining equality for persons with disability in our country.

Organizations, language, education, anti-disability actions and accessibility issues concern me, and I write about them in this book. All of the issues I have just mentioned have immense impact on the lives of people with disabilities, and are subjects which I could spend many years working with in order to benefit others. A systems diagram, depicting the creative friction between Whole Systems Design and People with Disabilities in my model might look like this, and is useful because it illustrates the parts of both my Whole Systems Design education, and some of my thoughts on persons with disability. The model also shows how these two areas are in motion, creating a friction between them that moves the need for change toward change.

The Well-Being of persons with disabilities can be expressed as a positive feedback loop. A positive feedback loop is the continuous re-inputting of information or changes into a situation which then results in increased information or change over time. For persons with disabilities, one positive feedback loop involves the cycle of stigma, unemployment and poverty. As time goes by, the stigma against persons with disabilities grows, unemployment of persons with disabilities grows, and the poverty that many persons with disabilities live in continues to grow. One reason for the existence of this positive feedback loop which gains in information and change over time is the promotion of stigma by shows such as Mad TV, The Jerry Springer Show, the evening news, and others. Not all ‘positive’ feedback loops are good, or helpful.

Another example of a positive feedback loop involves persons with disabilities, their well-being, and the promotion of their passions, skills, ideas and strategies. As time proceeds, the well-being of persons with disabilities gains in constructive ways because of the promotion of their skills, ideas and strategies. The gain in information and change from promoting persons with disabilities is slow at this time, but gain in these areas can be measured by the Social Security Administration’s willingness to begin considering disabled persons as workers, or the increase in the number of authors with disabilities writing about disability issues.