In criticizing the social model of persons with disabilities, it is important to remember that the issues related to the obstacles faced by white men who use wheelchairs are not the only issues to be examined. Persons with disabilities come from every race, class, gender and cultural background. Work aimed at understanding the diversity within the population of people who have a disability is not being done at the pace needed to ensure inclusion of these people in society. Disability, aside from race, class, gender and cultural issues, is a topic filled with diversity. Work to understand people with emotional disorders, learning difficulties or communication-related impairments is not being pursued to the degree that it needs to be to ensure inclusion of all Americans. One place to begin that work is through elimination of negative language associated with persons with disabilities.
For persons with disabilities, living life with the knowledge that other people view you as different springs from the use of language surrounding impairment. Language can make you feel so different from how other people are seen as to make you feel less than human. Language used to identify people with disabilities is very often abusive, and is an important part of the construction of disability. People with impairments are labeled with words such as “retard” or “cripple.” The abusive use of words like these promotes exaggeration and generalization of them, and become identifiers for the impairments people have. Referring to persons with disabilities through use of abusive labels transforms the person with a disability into a non-person, excluding them from society and the social norm. As Deborah Marks says in, “Disability: Controversial debates and psychosocial perspectives”,
“Disabled people are often simply not seen. When a person is referred to in terms of their technical aids, such as ‘the wheelchair person’, they are not accorded the subjectivity automatically conferred on nondisabled people. No one would refer to a nondisabled person as the ‘running shoes’ person.” (Marks, 1999)
Use of words to describe people with disabilities is not always globally accepted either. In England, the word ‘impairment’ is accepted by people who have a disability there. Internationally, however, the word ‘impairment’ can be translated and contain some unacceptably negative meaning. People in England have rejected use of the word ‘handicap’ because it is associated with ‘cap-in-hand’, or begging, yet in America ‘handicap’ is used everyday. Finding terms that are acceptable on a global scale for use in reference to people with disabilities is very much a task.
In America, words which have been used negatively toward persons with disabilities are being reclaimed with a positive association. ‘Cripple’ is one of the most despised words anyone can use in reference to someone with a disability, yet ‘Crip’ has become a word used among those same disabled people in a positive way. As Black Americans have created sayings such as ‘Black is Beautiful’, and Gay/Lesbian society has reclaimed ‘Queer’ in a positive way, so have people with disabilities reclaimed the abusive term ‘cripple’. I long for the day when people with mental health disorders reclaim one of the seemingly endless abusive words used to describe them; I’ll be one of the first people in line to get a T-shirt with the reclaimed word on it.
Yet as persons with disabilities are reclaiming negative terms, medical science is creating new definitions of disability. New mental health disorders are continually discovered or re-defined in America, and the Diagnostic and Statistical Manual created by the American Association of Psychiatrists has shown how. Post-Traumatic Stress Disorder, and Attention Deficit Disorder are two new mental health disorders, according to the DSM. In 1973 the APA Board of Trustees voted to take ‘Ego-dystonic homosexuality’ off its list. Psychiatrists are making disorders through their definitions of them. (Marks, 1999)
These definitions interact with other social categories like race and gender. Black people and women are more likely to be hospitalized and diagnosed as having schizophrenia. Poor people generally have more mental health disorders diagnosed than wealthy people. I can only conclude that Psychiatrists are swayed by their sense of social construction, and that my mental health disorder, for example, is a construction based on the opinions of these same psychiatrists. Any diagnosis or term that tends to generalize a mental health disorder is damaging because no mental health disorder can be described by one word. Instead, mental health disorders must be described by symptoms as well.
If you were to look into a recent copy of the documentation of mental health disorders that psychiatrists all over America use, you would find that there are some diagnosis such as Depression, Obsessive-Compulsive Disorder, Schizoaffective Disorder, Manic-Depressive Illness, Schizophrenia, and so on. A person who is diagnosed as having one of these disorders also learns about the symptoms of these disorders, such as anxiety, depression, paranoia, visual or auditory hallucinations and others. The doctor understands (hopefully) both the diagnosis and the symptoms, but everyone else is left out of the picture.
A person out in public has little to no understanding of the symptoms of a mental health diagnosis, in fact – they are bombarded with misinformation, stigma and outright hatred toward persons with mental health disorders through television, movies and cultural exchanges every day. Words such as “crazy”, “lunatic” and “nutcase” have become an ingrained part of American culture. When you ask someone with a lung infection what it feels like, they will give you a list of symptoms such as difficulty in breathing, a harsh cough, an inability to sleep in any position but sitting up, or others. You would listen to this list of symptoms and commiserate.
If you were to ask someone with a mental health disorder such as Schizoaffective disorder how she feels they would present a list of symptoms as well, such as anxious or paranoid, and they might mention that they were seeing or hearing or tasting weird things. Because of the misinformation and mental illness bashing presented through the media and American culture, you might fear that person instead of commiserating with them.
If psychiatrists and other doctors, as well as nurses and various medical personnel, would start using symptoms to describe the mental health problems their patients are experiencing instead of a generalized diagnosis which requires someone to apply their own interpretation of it, a large step will have been taken toward building an understanding of mental illnesses. If the media would start using symptoms and behaviors to describe mental illness instead of spitting out “Psycho” or “Schizo” or “Sociopath” all the time, a very major step will have been taken toward increasing public understanding and awareness of mental health issues.
If American culture would stop demonizing people with mental health issues, and instead promote understanding for those who have different symptoms of mental illness, we as a country would be half-way to understanding the 50 million persons experiencing symptoms of mental illness in our country. The symptoms of mental illness can be disabling enough by themselves, having to deal with people like John Walsh on “America’s Most Wanted” vomiting terms like “Lunatic” and “Psycho” every Saturday night only compounds the problem.
Persons with disabilities, like other minorities, struggle to deal with the pain of subtle humiliation and outright prejudice from others. It can be hard to try to organize around something none of us wants – disability. We undercut each other’s efforts, act like we don’t really like each other, and refuse to network with each other. We don’t give each other credit when we succeed if it is supposed to be our own area of expertise. Sometimes we reach for credibility on an individual level instead of as a class. Persons with disabilities who have money rarely put their cash where their mouth is.
(Barrett, 1994)
We are the people that demonstrate to the rest of society exactly how frail the human body really is. We show that ‘it’ can happen to everyone, at any time. The reality of disability scares nondisabled people, and they avoid us. The thing is, it scares a lot of us as well. We know exactly what it feels like to have our disability, and if it happened once it can happen again; its not like we can say, ‘well, I have my medical condition for life, no more for me.’ We know that stress accompanies disability, and that the way to deal with the stress is to control our environment to the extent that we can. But the fight for resources leaves us wondering if we will be able to maintain the environment we worked so hard to create.
To be very plain, independence and self-direction are frightening. We work to help each other out, and toward development of communities of support, that gives us dignified options. Compassion for each other makes our political goals clearer. What we need is a phrase that will remind us that working to be a full participant in society isn’t just a game we play when we feel like it, it is an every day of the year effort to change the myths and images about us. We can do this, together, and only if we avoid the dangers of fear and mistrust. Tanis Doe, in, ‘The Ragged Edge: The disability experience from the pages of the first fifteen years of the disability rag’, states:
“No matter how many articles are written and read, no matter how many media campaigns are held or accommodations are made, the very last disability to be understood, accommodated and then accepted will be disorders of thought. We can’t seem to accept the idea of thinking differently. By ‘We’ I mean everyone, people who identify as having disabilities and people who don’t because we have a hierarchy of disability that puts mental illness and mental disabilities among the least desirable.” (Doe, 1994)
If we are to work together in the same manner that we would like to be treated, inclusively, then we must work with all people who identify as having a disability, no matter what their disability is. To exclude people with a particular disability, and then demand rights, is hypocritical, and should not be tolerated. To better understand persons with disabilities, we might look at some of the patterns surrounding disability issues.
Within this paper there are several patterns involving persons with disabilities, patterns which point to a need for effort and understanding. Ignorance of disability issues, in relation to social wholeness, in jobs and workplaces, and in general, is a pattern in America. There is a general ignorance of disability history in our country. The rules created to run the Social Security Administration are based on an outdated poverty line setting; the misinformation which is legally doled out by representatives, and general lack of morality, promote poverty and joblessness among people with disabilities.
The Social Security Administration enforces dependence on Medicaid and Medicare by limiting the amount a person can earn while on Social Security Disability Insurance or Social Security Insurance. The actions on the part of the Social Security Administration carry murmurs of anti-disability sentiment.
There has been a pattern of hate toward people with disabilities in American history, perhaps beginning with the original colonies, which forbade persons with disabilities the right to settle in town unless they could show that they could support themselves. Institutions, for both ‘physically’ and ‘mentally’ disabled persons in America, have been noted for their abusive treatment of persons with disabilities. The enforced poverty created by the Social Security Administration makes one wonder if that kind of hate toward persons with disabilities has truly begun to diminish.
In education there is still segregation between persons with disabilities and nondisabled persons. There is a pattern involving lack of educational accommodation, and education for nondisabled people about persons who are disabled. Education concerning the abilities of disabled people is only coming from persons with disabilities, in my experience. The best way to end this pattern concerning lack of educational accommodation is through language, yet language presents a barrier as well.
A disturbing and harmful pattern concerning the use of negative language associated with persons with disabilities exists in America. People misuse medical terminology in order to belittle disabled Americans, notably Americans with mental health disorders, who are degraded daily on public television. Groups like the AMA create new disabilities every time they create a new diagnosis, complete with new opportunities for stigma and abusive treatment of disabled people. This pattern of negative language use has gone on so long that people in general are having trouble finding acceptable language to use in association with persons with disabilities.
Whenever you enter a public place, look around for signs of accommodation. A pattern exists involving public buildings, a pattern where accommodations are made for select groups of persons with disabilities, such as people who are visually impaired, or an occasional ramp. The accommodations being made are there because the law requires them. There are no accommodations for people who are cognitively impaired, or colorblind, for example. Buildings need to be designed to be accessible to all of the people who use the building. America needs to end the pattern of treating persons with disabilities like guests in public buildings.
The last pattern I will mention here involves one of persons with disabilities and a lack of organization. Persons with different disabilities have some fear of each other. Some of us fight among ourselves, believing that we are the expert on a particular disability, even among others with the same disability. We have divided ourselves into groups according to disability. We need to be inclusive of all disabilities, together, in one group with a loud voice. Denying one person with a disability that is different from yours, and then demanding rights for yourself is wrong.
The many patterns that are associated with persons who have a disability open the minds of those who perceive them clearly, yet persons with disabilities face a couple of paradoxes that are incredibly frustrating. The Presidents of the United States, over the last decade or so, have promoted the idea of persons with disabilities entering the workforce, to some extent or another. Unfortunately, and quite counterproductively, the Social Security Administration limits the amount someone can earn while on Social Security. A fear on Social Security’s part that someone will claim to be disabled when they are not drives Social Security’s stance on limited income for people with disabilities.
One has to wonder why they don’t trust their own application process. Earning more than the limit Social Security has defined results in termination from the program, including medical care. For many, this means a one way trip to a nursing home, instead of the wonderful job our Presidents describe for the public. President Bush Sr. created the Americans with Disabilities Act to enable Americans with disabilities, partly to get them to work.
The ADA is the civil rights act for persons with disabilities, but its creation also brought into being another paradox. The Americans with Disabilities Act requires that institutions be neutral on the issue of disability, accepting people as people, and for their abilities. The act requires equal treatment; yet to receive that equal treatment persons with disabilities must be singled out of society as disabled. The two major paradoxes associated with disability in our country both stem from the federal government. I am glad that my education allows me to see these paradoxes and other things surrounding disability; they reflect directly on my life.
There is a general ignorance of disability issues in America, among both disabled and nondisabled persons. Personal mastery is a tool that persons with disabilities can use to guide themselves toward a vision of their creation, as well as learn how to work with one-another. Transformational leadership, coming from within the whole of persons with disabilities, is needed in order to help guide us toward greater social inclusion. Organizations need to work with persons with disabilities based on what they can do, and not on their disability.
The Social Security Administration needs to begin trusting its own application process, while allowing persons with disabilities to earn what they can without limitations. Enforcing poverty and medical dependence on a group of people is the worst kind of violence, and is immoral. Physical and emotional hatred toward persons with disabilities must stop, and the way to achieve that is through education of nondisabled persons. Education of both disabled and nondisabled persons concerning disability issues is one of the ways to help persons with disabilities achieve greater inclusion in America. Buildings, and other public places, must be designed to accommodate anyone, keeping in mind the many disabilities people have. Perhaps most importantly, persons with disabilities must become accepting of each other, and work toward solving any interaction problems they may have.
Persons with disabilities are all part of a social whole. We have lived with mistreatment, neglect and poverty, and do not find the mistreatment of others acceptable. We may yield to the challenges that face us at first, but we always continue to work toward our goals. We may not be able to see our future, or the path leading to it, but like a river over time we will drop all of the negativity people throw on us to carry, and our purpose and place will become clear. We need to be honest with ourselves and those around us, so that we can have more constructive dealings with each other and to create change. We need to teach people, both disabled and nondisabled, that blaming others is counterproductive to focusing on our abilities to do a job and succeed. We need to focus on the vision we have and not the things we need to do in order to reach the vision.
We have the opportunity to be open with each other, create a shared vision, and work toward a future that is more supportive to our well being than the reality of today. We have the ability to reach for personal mastery, with all of its benefits. We can learn about ourselves, and then teach others. We can help nondisabled persons in America to understand that persons with disabilities are able, creative human beings through our own personal mastery and leadership.
