Toward a Policy on Disability
WHO ARE PEOPLE WITH DISABILITIES?
People with disabilities are people with apparent or non-apparent conditions that sometimes affect their ability to perform major life activities in the same way as people without disabilities. An apparent disability could be a mobility impairment, such as from a spinal-cord injury, multiple sclerosis, or cerebral palsy; or impaired vision or hearing; or a back or other body injury. A non-apparent disability could be a learning disability, an allergy, or another health-related condition.
We people with disabilities are of every constituency—every ethnicity, religion, sexual identity, culture, and class background. We include educators, scientists, blue-collar workers, activists, managers, students, artists, writers, parents, partners, and lovers. Perhaps most important of all, we are problem solvers. We use all our experience, thoughtfulness, creativity, and resilience. We employ technology, equipment, and personal care assistants to help us live our lives in school, at work, in social settings, or at home. Disability oppression and advocating for our human rights unite us as a worldwide constituency. Currently about a third of people with disabilities identify as a constituency, based on being targeted by disability oppression.
Some of us have lifelong disabilities, starting at birth or in childhood. Some of us acquire disabilities later in life. The distresses that get laid in are different depending on the onset and nature of the condition. It is particularly difficult for those of us who are aging to suddenly discover that we have lost some of our hearing, or that our knees or hips no longer function well, or that we have developed chronic backaches or digestive problems. It’s important to look at these issues and admit our disappointments, and our yearnings to return to what we had considered a “normal” life.
If we look at our disability-related challenges from outside the oppression, they simply require us to develop the tools and relationships we need to help us discharge and go ahead and live as big and wonderful a life as we can.
CAN A DISABILITY BE DISCHARGED?
We have learned in RC that with discharge the symptoms of some disabilities can decrease or even disappear. Other disabilities remain unaffected by a person’s re-emergence from distress (although the effects on the person’s life can certainly change). Which conditions can be discharged is speculative. We don’t yet have enough information to make any assumptions or to formulate a theory.
LANGUAGE
Describing people with disabilities is charged with confusion. Some people prefer the term “disabled.” Others dislike that and may use euphemisms, such as “with special needs” or “differently abled.” A useful distinction is between impairment, which is the actual physical condition, and disability, which results from interaction with an inaccessible environment and the limitations created by society’s attitudes and structures. Like with other constituencies, the so-called inherent qualities of disabled people are the excuse, not the reason, for the oppression.
CAPITALISM AND DISABILITY
Capitalism is based on profit and the private ownership of goods and services. It requires high productivity from an underclass of workers, which also guarantees hefty profits for the owners and managers. Because an enormous number of individuals need work and thus are willing to work for low wages and few benefits, if a worker becomes disabled on the job, she or he can be easily replaced.
Capitalism defines success in financial terms. Profit is everything, and more is better. Capitalism has convinced us that independence is based on financial and material well-being. It tells us that we must rely on ourselves and that the opportunities and wealth we accumulate are ours alone to enjoy. It says that we should only be concerned that we and our own families are cared for and protected from harm. It teaches us to feel incompetent if we ask others for help. It discourages building teams of comrades or allies around ourselves. It can leave us feeling intruded upon by others “invading our space.”
As young people, we are taught to excel as best we can in order to build self-confidence and become “marketable” in a corporate world. Our lives are structured to prepare us for competition with our peers. As we grow up, “success” is determined not by our happiness but by how much money and how many material goods we acquire. People with disabilities, who may not be able to compete economically, become casualties of the economic system.
Throughout the ages, economic systems have made people with disabilities a classless and “non-productive” group. They have been seen as incapable of keeping up with the “normal” production rates of profitable goods needed to sustain a growing economy. In ancient societies, if they weren’t immediately killed, they were exploited as court jesters or wise sages, or paraded about like show animals. In no society have they been acknowledged as equal to their non-disabled peers.
DISABILITY OPPRESSION
People’s early experiences with bodies—their and other people’s physical selves and ability to communicate clearly, differences in mobility and health—set them up1 for confusion about bodies, needs, and inherent worth.
The media and able-bodied parents, teachers, and friends encourage able-bodied children to be cautious of anyone who looks, acts, talks, walks, or thinks differently from what society has identified as normal. Some people end up thinking a disability is contagious.
We who have disabilities are taught to be embarrassed and make every effort to hide them, even though they are part of what makes us special and unique. We are rejected by a society afraid to accept the diversity of disability.
Misinformation, stereotypes, and assumptions about people with disabilities (that we are a burden, ugly, dependent, asexual, evil, saintly, inspirational, courageous, lacking in intelligence, and so on) date from ancient history and were reinforced by the eugenics movement2 of the nineteenth century. Currently media-reinforced stereotypes, the youth and beauty culture, the fitness industry, and so on, convey misinformation and confusion about people with disabilities and our attractiveness and acceptability.
Some of us were denied education because no one thought we were smart enough to learn or understand anything. Sometimes we were left isolated and lonely while our peers did interesting and worldly things.
Medical practitioners, counselors, clergy, and friends convinced us that investing too much in our futures could be a waste of time. We received minimal assistance from vocational and rehabilitation agencies. Well-intentioned service providers seemed more interested in counting us as one more statistic on their monthly report than helping us reach for a more productive life. Those of us with the most significant disabilities were seldom even tested for job opportunities. Being unable to prove ourselves profitable (as defined by the dominant white, male, able-bodied society), we were often relegated to poorly run institutions and nursing homes. Although it would have cost less to care for us outside of institutions, service providers and the medical profession preferred to keep us out of sight. Those of us who could work often worked in blue-collar jobs. Before they even knew who we were, service providers decided our fate, based on some report about “handicapped” people. We were rarely asked what we wanted; we were told what we would have.
Disability oppression intersects with and is reinforced by all other oppressions but primarily by “mental health” oppression (disability being defined as not normal in the way that heavy emotions, like anger or fear, are defined as irrational or dangerous), young people’s oppression (disability being synonymous with dependence and immaturity), and classism (disabled people being viewed as unworthy because they are unable to be “productive”).
Society tends to blame individuals for their failure to be “normal.” People with disabilities are now identifying disability oppression as those social attitudes and environmental barriers that demand “normalcy.”
Disability oppression includes low expectations that we people with disabilities will function competently and contribute to and participate in society. It creates self-doubt and lessens the belief we have in ourselves. The contradiction3 is to live outside the oppression by showing our intelligence, creativity, perseverance, and beauty in every possible way.
THE COMING OF OUR RIGHTS
In the past there were two main models of disability: the charity model, which views people with disabilities only as recipients of pity and donated resources, and the medical model, which sees disabled people as patients who are unable to take care of themselves, work, or contribute in any big way to the wider world. Under the influence of these models, those of us with very visible conditions were often looked at with pity or compassion. Non-disabled people would step aside when they saw us approaching, pat us on the head for any small accomplishment, or want to take care of us. They seldom asked for our input.
Change for any oppressed group occurs when the people in the group find their own voice. In the late 1950s, inspired by disabled veterans returning from World War II, and in movements for liberation in the 1960s and early 1970s, we people with disabilities—supported by feisty, self-asserting parents who bucked the system—began to demand our rights as citizens who deserved equal access. We were tired of the patronizing attitudes and the inaccessibility of education, housing, and transportation. A civil rights or consumer model was born that recognized people with disabilities as the drivers of, instead of the passengers in, their own lives.
We began to live bigger lives, as we saw others like us deciding that we all had a right to a big life. Colleges, universities, training schools, and other institutions did not go out of their way to become accessible to us, but we were let in and managed to change the culture for ourselves. Faculty and fellow students became our friends and advocates. Physical access began to increase as people worked together to make campuses more welcoming to us. New legislation broke down barriers that had kept us apart from other people. More pathways to higher education and careers became physically, professionally, and socially accessible. We became teachers, lawyers, scientists, bankers, writers, and joined many other professions. We began to form a philosophy that gave us hope and reunited us with our own power. And things began to change. The United Nations Convention on the Rights of People with Disabilities attests to the success of the worldwide movement of disabled people organizing for recognition and power.
ACCESSIBILITY IN RC
In RC, accessibility means enabling persons with disabilities to attend Co-Counseling sessions, classes, and workshops. It can include building a creative and thoughtful team around a person to ensure that she or he can fully participate.
In addition to wheelchair access, accessibility can mean having refrigeration available for people who bring their own food to a workshop. It can mean making sure people have comfortable chairs or places to lie down, or printing workshop materials—like articles, rosters, and schedules—in larger-than-usual print. Hearing Helpers, available for rent from Re-evaluation Counseling Community Resources,4 are useful devices for those with even minor hearing issues. A Community might subsidize the cost of a wheelchair-accessible van or taxi to allow someone to participate in an RC event. Co-Counselors can use fragrance-free body and cleaning products to ensure a comfortable environment for those who are sensitive to the chemicals that are in many of these products.
When looking for an accessible workshop site, the workshop organizer should find out what accommodations are needed for a participant with a disability. Is wheelchair access required? Does the participant need a chemical-free environment? Can a person’s voice be heard throughout the room? Community finances must be considered when choosing a site, but care should also be taken to set up the most rational situation possible for a person with a disability.
In places where wheelchair access is poor but not impossible, the person with a disability can be asked if she or he is willing to accept makeshift arrangements with lots of allies around. Can makeshift or portable ramps be used? Can a bathroom door be removed? If the dining hall is inaccessible, can meals be eaten by a team of people at a different location?
For some people, getting lots of help will be restimulating. Several big sessions on it can make clearer what the options are. Others will find it a delight to have a thoughtful team around them. A team of allies can be a lovely contradiction, because of the intense focus on inclusion as well as the increased individual attention and help.
Because each of us with a disability has distinct needs, accessibility will have many different meanings. Thus it makes sense for people with disabilities to be included in the planning and negotiation of workshop sites. We are the experts on our own individual needs. Non-disabled Co-Counselors will not be able to understand or accommodate them if we are not involved. Please don’t leave us on the sidelines or make decisions for us. To take the position that we should not have to worry about accessibility, that it should be done for us, is part of the oppression. It’s like saying, “It is too much trouble to have you involved—we will do it for you.” A slogan of our wide-world movement is “Nothing about us without us.”
In RC we want to assist each other to function in the best way we can. We are eager to appreciate and validate each other’s strengths and goodness. However, sometimes validations can have patronizing overtones and overwhelm people with disabilities who are trying to carve out a niche of their own while coming to terms with their condition. Phrases like “I don’t think of you as disabled,” “You have overcome your disability so well,” or “You are so inspirational” send the message that the person with a disability is not okay. They often come from non-disabled folks who don’t even know the person they are addressing and just want something nice to say. Every human being deserves to be validated based on her or his own reality and accomplishments. As people with disabilities, we deserve no less.
WHAT IS AN ALLY?
In the wide world, an ally is often a person who understands disability from either a personal or a work-related experience. Offering assistance, resources, and information to a person with a disability is part of the ally’s job. RC allies do some of the same things; the main difference is that discharge is a critical component. RC allies counsel and support people with disabilities to discharge whatever is in their way of being able to manage, as best they can, every aspect of their life—from health care, to choosing appropriate accommodations, to securing satisfying employment, to having a big social network, to, of course, becoming a strong and visible presence in the RC Community.
To become more flexible and open to the various needs and goals of every individual, allies must take time to discharge and reflect on their own experiences with and assumptions about disability. They must understand why one person who uses a wheelchair is not like another, or why one person may want to be challenged and another is hesitant to take any unfamiliar risks.
WE ARE OUR OWN BEST ALLIES
Those of us with similar and different types of disabilities need to spend time together. We need to be each other’s friends and allies. We need to appreciate the views and wisdom that come from the complex intersection of our various constituencies based on race, geography, sex, age, gender identity, and so on. No one but us can directly understand the experience, struggles, and delights of living with a disability. We need to fight for each other in the places where insecurity and self-doubt overwhelm us and prevent us from proudly directing our lives. We need to celebrate our collective and personal victories, while remembering that some of us are heavily oppressed and in great need of each other.
We need to know each other beyond the stereotypes that keep people with different disabilities apart and that create hierarchies in which one disability is considered better than another.
We need to insure that every life is seen as invaluable and worthy and create a safe space for one another to discharge, re-evaluate, and fully enjoy our lives.
A LIBERATION PROGRAM FOR PEOPLE WITH DISABILITIES
Here is a liberation program for people with disabilities:
•Tell the story of your disability.
•Work on internalized oppression, taking full pride in your body and speech patterns.
•Work on your need for assistance, and take pride in being exactly perfect.
•Reach for close relationships with other disabled people, across all categories.
•Train allies and hold out high expectations for them. Teach them how to counsel us.
A PROGRAM FOR ALLIES
Here is a program for allies:
•Discharge about your body and health issues.
•Work on early memories of need and help.
•Discharge on what you were told about “them” and the assumptions you may have about people with disabilities.
•Challenge your care-taking patterns and any pull to make things accessible without asking what is needed.
•Take risks and try things as you get to know and support a person with a disability.
•Do not assume that you understand the lives and needs of people with disabilities.
•See being an ally as an opportunity to be close to and support a person whose life is different from yours.
Laurie Summers
Silver Spring, Maryland, USA
Assisted by Marsha Saxton
International Liberation Reference
Person for People with Disabilities
El Cerrito, California, USA
People with comments or suggestions are welcome to e-mail me at lsummers@aaas.org. Laurie
1 “Set them up” means predispose them.
2 The eugenics movement sought to “improve” the human race by controlling who would reproduce. It targeted people with disabilities—along with Jews, people of color, poor people, and others—with sexual sterilization, institutionalization, and death.
3 Contradiction to the oppression
4 Re-evaluation Counseling Community Resources is the international office for Re-evaluation Counseling, located in Seattle, Washington, USA.