The following are remarks made by Judi Chamberlin in accepting the N. Neal Pike Prize, from the Pike Institute on Law & Disability Boston University School of Law. It was the first time the award had been given to someone for service to people with psychiatric disabilities.
Dean Cass, Mr. Pike, distinguished guests, and friends:
It is quite an honor to stand before you today. Before I begin, I want to thank some very special people who are here. I consider myself lucky to have such a wonderful family, especially because so many psychiatric survivors are alienated from their families. My family is an important part of my support system, and they are all people I would choose to have as friends. So to my wonderful husband, Howie Cahn, my father, Hal Ross, my daughter, Julie Chamberlin Wakefield, my son-in-law, Jim Wakefield, and especially my granddaughter, Evelyn Wakefield, thank you for being there for me always, and being here with me today to share this special day.
It is a great honor to be the recipient of this wonderful award, an award that has been won by such notables as Justin Dart, Ed Roberts, Fred Fay, and Irv Zola, among others. Justin, Ed, Fred, and Irv are among my heroes, people who have shown that having a disability puts no limits on what one can accomplish, or what one can dream. To be included in such distinguished company is a great honor, indeed.
It is also an honor to realize that the first time the Pike Prize has been given to a person in the psychiatric disability field, I have been selected as that person. One of the things I have learned from Justin, from Ed, from many other wonderful disability leaders, is the importance of inclusiveness within the disability community. We may differ from one another in the exact nature of our disability, but we share far, far more: society tends to see the disability first, and the person second (if at all). People with disabilities are discriminated against, have to overcome obstacles to obtain the most ordinary things in life, and are included among the most disadvantaged members of our society. And yet people with disabilities have accomplished-are accomplishing-all kinds of things: education, jobs, careers, homes, family life, despite the nay-sayers who are always there, saying how we’ll never succeed, how we should rein in our dreams and accept our “natural” limitations.
Disabilities-all disabilities-may present us with difficulties, but they don’t mean we shouldn’t dream. Far from it, as the stories of countless individuals show. The real problem is not that some people can’t walk, or see, or hear, or that they may see the world somewhat differently from others. The real problem is the attitudes of those who would be our “protectors,” those who would “take care” of us, those who can see only the disability. The people in this room are some of the very important people, all over this country, and around the world, who refuse to see disability as only an obstacle, and who have devoted their careers and their lives to trying to make this a better world not just for people with disabilities, but for everyone.
I am happy and proud to be a part of the disability community. Just as I have learned from people with other disabilities about the specific nature of their disability, and about what accommodations or environmental alterations they may need to live the best possible lives, so I have helped to educate them about the specifics of psychiatric disability. In the disability community there is a saying that the disability resides not in the person, but in the environment that makes it difficult for that person to function. The barriers that people with psychiatric disabilities face are largely attitudinal barriers, but they are no less real than the building that a person in a wheelchair can’t enter, or the warning sign that a blind person can’t read, or the auditory signal that a deaf person can’t hear. When I speak of attitudinal barriers, I don’t mean just prejudice or stigma-although these are very real- I mean the actual, legal discrimination that people with psychiatric labels face every day. We are-quite literally-second-class citizens in our own country, barred by law from doing things other people do routinely, or required by law to do things we wouldn’t do by choice.
The existence of involuntary commitment and forced treatment is part of the everyday reality for people with psychiatric labels. Because of what is presumably a medical diagnosis, we can be forced by law to enter and remain in institutions. We can be involuntarily committed based on a psychiatrist’s judgment that we are-or might become-dangerous. We can be required by law to ingest substances we don’t want in our bodies. We can be forced to undergo brain-damaging electro-shock “treatment.” We can even be forced-in about half the states in this country-to comply with medical directives even when we don’t meet the commitment standards of that state, and are residing in our own homes.
As we speak, in the state of Nebraska, a husband and wife, Richard and Geraldine Sima, who desperately want to see each other are separated, because Mr. Sima is an involuntary patient in a psychiatric hospital, and visits by his wife have been deemed “untherapeutic.”
Involuntary commitment and forced treatment are issues that many people don’t want to talk about, or think about, Even within the disability advocacy community, it is only a small minority which wants to challenge the existence of this basic inequity. Most mental health lawyers and advocates are concerned with making the commitment process “fair,” or with insuring that people facing commitment have lawyers to represent them, or that the commitment standards are precise rather than vague. I submit to you that involuntary commitment and forced treatment can never be “fair”, in the same way that slavery can never be “fair.” In our legal system, supposedly, you can be punished only for something you have actually done, and that only after a trial at which you have the right to confront your accusers. In the Alice in Wonderland logic of involuntary commitment, however, a person stands “accused” of “mental illness”; that is, of thinking or acting in some way that is disapproved of by others, and often the person so “accused” has no idea what he or she has done to bring such punishment. In truly Orwellian fashion, incarceration in a mental institution is labeled “help,” and the person who seeks to avoid such “help” becomes “non-compliant” or “treatment resistant.”
I firmly believe that I stand before you today, rather than being lost in some back ward or equally oppressive “community residence” (another Orwellian use of language, by the way), because of my non-compliance and treatment resistance. Because I fought the drugs, the control, the indoctrination, I was able to retain my personal autonomy. And because I was lucky enough-long after I had left the psychiatric system behind-to find others who agreed with me, we have been able to give shape, and voice, to the essentially very simple idea that being different is not a crime.
What we have variously called the mental patients’ liberation movement or the psychiatric survivor movement is a worldwide network of people who reject the labels we have been given and who believe that we have the power to help and sustain one another. We rejoice in our differences when they lead us to create poetry, and we comfort one another when our differences lead to pain and suffering. But we reject-clearly and firmly-the idea that our differences are a reason to be discriminated against, or segregated, or punished.
These are dangerous times for people who are different. Not just people with disabilities, but people who are poor, who are members of racial, ethnic or sexual minorities, or who refuse to subscribe to the orthodoxies of the day, are under attack. It is essential for us to work together, to build coalitions to defend and protect what we have accomplished, and to fight attempts to take away our basic citizenship rights. Make no mistake; the threat is real.
Politicians mean it when they talk about repealing ADA, or IDEA, or promoting so-called “family values,” or getting the crazies off the streets. If there was ever a time for people to put aside their differences and recognize their commonalities, this is the time. We have work to do, and if we allow people with certain “unpopular” disabilities (such as people with AIDS or “mental illness,” or severely and multiply-handicapped children) to be separated out and deemed unworthy of protection, we will all be the losers.
So the recognition by the Pike Institute that psychiatric disability is part of its purview, and the honor you have bestowed upon me today, is especially timely. I am very confident, as I look out over this group of outspoken advocates, that we will let our voices be heard loud and clear. I am proud and honored to be among you.
