Disabled: One More Label Sylvia Caras Labels are arbitrary. Labels are subjective. Labeling has wide ranging consequences. Labels are used by the "in" group to create and define deviance, to speak about the "others." Labels are used to oppress and dominate. First the Social Security Administration and now the Americans with Disabilities Act have invited me to join the largest minority in the United States and label myself. Should I use the word disabled to describe my mood swings and melancholy? I have thought a lot about whether or not I want the tag disabled. I've decided I have a lot to gain. In 1987, members of my mood network were describing how difficult it was for them to deal with the Social Security insurance paperwork, how long it took to get disability benefits, how humiliating were the process and the rejections. I listened and felt challenged go through the process myself, so I could find out how to cut through the bureaucratic rules and write up a how-to manual for people facing these obstacles. I believed that would be useful to others, and a good use of my skills. I did a little library research, talked with a few experienced people, and carefully completed the forms. I made notes of the procedures and the language I used. I was interviewed by a contract intake psychiatrist for 30 minutes and signed releases for my medical records. As I left his office in a private medical building, I wondered how crazy I had seemed to the physician and what he thought of me. While I waited, and waited, and waited, I studied the formal appeals procedures and planned my next steps. Eventually I received a notice letter from Social Security. My claim had been accepted; I was to receive benefits. Success was humiliating. After all, I had only applied for benefits to learn to help others with the process. Yes, the inertia of major depression and the passion of disruptive energy limit my life activities, but, ... but, ... but am I really mad? Confidential psychiatric records said so. Now I had even more evidence of how the world perceived me: mentally ill. Despite the monthly direct credit of a high three figures to my savings account, and the later Medicare coverage, I was humbled; I felt shamed. In order to reduce my discomfort with my new identification, I started saying tentatively "I'm disabled" as a conversational alternative to "yes" or "no" when asked to volunteer or socialize. I didn't experience much discrimination, and I began to feel less to blame for my psychiatric adventures, even that I was less of a victim. I began think of myself as "disabled" as well as woman, brown eyed, grey haired, Californian, grandmother, activist. Disabled. In 1991, when I first started to hear murmurings about the Americans with Disabilities Act, I didn't realize that it applied to "psychiatric impairments." When I discovered that my civil rights, too, were now legally protected, and that I was eligible to apply for a singular training opportunity specifically for people with disabilities, I found financial sponsors, requested support letters, submitted my name, and was excited to be accepted into both parts of the training and to become a member of the Americans with Disabilities Act Training and Implementation Network. Now I had to deal with wearing the word disabled in an even more public way. After all, my disability is relatively inconspicuous. I usually have a choice about whether to disclose my impairment. What would the other trainees think when they saw me appearing, I believed, pretty ordinary? Would I feel like an outsider because I wasn't using a wheelchair? Is the disability world where my central identification is? Or am I being indulgent, hiding behind moods and labels I should be able to overcome? Whatever reservations and reluctances I had been feeling and thinking about faded away as I got acquainted with people from as far away as Guam and as close as Cupertino. Others also had inconspicuous disabilities (and it didn't seem socially correct to ask how they qualified). Many had a wondrous background in access activism, had been advocating since before 1973 for curb cuts, ramps and other very fundamental accommodations. They had already developed a proactive vocabulary to express the goals of independent living, personal assistance, equal access and opportunity. They were lobbying; they were protesting; they had political and manoeuvering knowledge; they had consensus strategies. I wondered why I knew so little about the disability rights movement. For the past five years, locally and nationally, I had been doing protection and advocacy work, receiving newsletters, going to conferences. My sources were from the mental health community and I was uninformed. I felt excluded from the broader knowledge base. Was this intentional exclusion? If so, by whom? I associated my lack of knowledge with the general style of the mental health system which isolates users of mental health services in separate, often locked, hospitals and residences, and provides separated and unequal support services. Without realizing that we had natural allies, rights advocates had gone forward with our work in heroic but lonely separateness, as isolated by our own movement as by the system of care we were challenging. I was aroused and heartened by the work others were doing, by their language, by their quick support for our rejection of involuntary interventions for competent adults. I was bolstered to hear others talk about fear and shame and isolation and stigma, and more need for belonging and acceptance and touch. There was already a word for coalition: cross-disability. I was stimulated by the full promise of the power of a unified cross-disability movement. I was interested in what I learned about other disability labels, how some of the symptoms and behaviors crossed labelling categories, how learning disabilities and environmental illness and psychosis have some common symptoms and behaviors. During informal conversations, I learned other ways to view my behavior. People with chemical sensitivity spoke of rushes of anger when they were exposed to perfume. I had learned those rushes of anger were warnings of mania. People with learning disabilities spoke of difficulty paying attention or sitting still. I had learned that not concentrating and not remembering were symptoms of depression. Now, I learned more about alternatives by using the perspective of other disabilities. During that first week of training, I felt accepted and safe. I risked my security by asking for an accommodation. Too much background noise made it hard for me to focus; I was offered a listening device; increasing the foreground volume helped and I was able to stay attentively in the main training room. I have been used to having my discomforts diagnosed, pathologized, and medicated. Now, I was inarticulately soothed by having a personal need both valued and easily met. I asked again: Realizing I would be overloaded if I took the written exam in the main room, I asked to take the test alone. Again, easily, without judgement, I was encouraged to complete the work in a way that maximized instead of stressing my ability. Psychiatry uses diagnostic labels for authorization to intervene and fix. I thought a lot about how my treatment disabled me. Here, I was experiencing the language and attitudes of anti-discrimination law. I was surrounded by the implicit valuing of my differentness. In mental illness circles there is much said about stigma. Stigma is an attitude and attitudes are very hard to change. But the Americans with Disabilities Act (ADA) addresses discrimination, an action. By making discriminatory actions towards the disabled illegal, the ADA broadens the scope of our civil rights. Even without disclosing my psychiatric history I am protected by some parts of the ADA. Employers can no longer ask any questions about medical history or disability on application forms or in pre-employment interviews. But in order to ask for the accommodations that I believe will make working or program participation possible for me, I must disclose my disability. I've come to the conclusion that this is an advantage. I believe wrapping myself in the warmth and protection of the disability label is good for me. The first category of the ADA disability definition -- physical or mental impairments that substantially limit major life activities -- is controversial to survivors who reject the medical model, to many who want acceptance, not medicine, for altered states of mind. I understand that position and find it congenial, and I still looked past ideology to the balance of the definition in categories two and three. The further parts of the ADA definition protect from discrimination persons with a record of disability and persons regarded as disabled. I have a record of disability: there is an unexpungeable "blotter notation" at my home town police department that shows up whenever there is the most elementary background check for credit or employment. I am regarded as disabled: many who see me as "bipolar" become wary when I comment that I'm feeling better, and discount as grandiose my global and long term interests in systemic change and spiritual understanding. To receive the protection of many of the employment provisions, the employer must at least be told that there is a disability; and the employer may require proof. A qualified individual with a disability may ask for reasonable accommodation during the application and testing process and to do the job. But the employer is not required to even discuss reasonable accommodation unless the employer has been informed that the employee or applicant has a disability. Despite discontent with the language of psychiatric labeling and the language used for referring to emotional and mental illness, I want to use the ADA to take advantage of the ADA protections. I am not wiling to forfeit the aegis of this landmark civil rights legislation. I want membership in the cross- disability community. To strengthen the ADA, each protected individual must use and test the provisions. I hope that all of us who have been excluded because of madness will now look for work, volunteer our skills, get independent housing, request integrated programs and services, demonstrate that we are not a threat, use the law to ensure broad equal opportunity for users of mental health services in a variety of areas. People with disabilities in the United States are 43 million strong. The unified disability movement is growing stronger, networking, forming coalitions, lobbying. Information is being exchanged among disabilities. We can internalize a powerful positive social definition of disability. We can be together in interdependence and relative equality. We can be rich in obtaining and sharing information. We can champion common goals about independent living and access, and integrated values about these goals. I want to create blame-free acceptance from others of my self and my purported disability. I want to diminish discrimination and increase inclusion through activism. To achieve this goal, I am using the label "disabled." sylviac@netcom.com Copyright This file came from anonymous ftp sjuvm.stjohns.edu cd MADNESS The MADNESS ftp site is a service of MADNESS, an online discussion on LISTSERV@sjuvm.stjohns.edu Please credit the list if you copy this file.