Institutional Madness: Speaking out against institutionalism

Americans learn from a very early age that our nation began with certain inalienable rights, including the right to life, liberty, and the pursuit of happiness. Is this reality or is this rhetoric?

From the very beginning, if you were a white, male, property-owner over a certain age who wasn't institutionalized these rights could be reality. But if you happened to be black or a woman or if you didn't own property, these rights became rhetoric. If you were of Japanese descent in World War II, rights became rhetoric. If you happened to be an immigrant to this country, then you had to prove yourself worthy of attaining these inalienable rights. In the eyes of God or some universal entity we may all be equal, but in the hands of American government, equality has been purchased with the blood of every minority group that exists, just like the colonial freedom from England.

Trauma is not only a part of American government, it seems endemic to all political systems, as we currently witness conflicts around the globe. Why, with so many other issues to contend with, do we people with disabilities at this very moment seem to be the lightning rod around which our American institutional madness is coalescing?

I have written other places about Jack Kevorkian. Last night I heard even his attorney is abandoning him, calling him self-destructive. For those of us who have been fighting his campaign of genocide against people with disabilities labeling him self-destructive is a little bit like labeling Adolf Hitler demonstrative. It may be true, but it disregards the truth of what's really happening: people being intentionally murdered.

One campaign against Kevorkian and the so-called assisted suicide movement is called Not Dead Yet. And we aren't! We are living, breathing, human beings who aspire to those inalienable rights that we all learned about in school. That means being able to participate in society on an equal basis. Not being killed for our own good or, the other alternative being bandied about, locking us up in an institution somewhere.

Lately, one of our local PBS stations has been showing a lot of anti-aging programs. Healthy, sunny-looking people in their fifties who say things like there's no reason we shouldn't be able to live to be 120. After about the fifth time I heard that one I said I never want to hear it again from anyone under 120. And that's how I feel about institutionalization.

When my governor, or yours, volunteers to live in an institution, then I might start to believe it's a good place to be. When my senators and representatives, or yours, campaign for living out the days of their retirement in a nursing home, and follow through by actually living in one after they retire, then I might start to believe it's a good place to be. When the owners and stockholders of nursing homes begin to live in and conduct their business from nursing homes, then I might believe it's a good place to be.

Until then, I have to believe my own eyes and ears. No one I know who has lived in a nursing home wanted to stay there. Every time I've been in a nursing home people of all ages have described what a horrible a place it is to be.

Institutions by their very nature constrict freedom; suppress life, liberty, and the pursuit of happiness. Institutions are a bizarre mixture of what we glibly call communism and capitalism. On the one hand, for the residents of nursing homes, there is the communistic rhetoric of the most good for the most people. On the other, for stockholders of nursing homes, there is the capitalistic reality of making as much money as one can. This, of course, comes from filling beds. It doesn't really matter who lies in them. So people who are least able to defend themselves, like people with disabilities who need supports to live in the community, are likely targets to put in those empty beds.

While politicians, many of whom are either nursing home shareholders or supported by lobbies of them, continue to advocate for the increase of these institutions, they have recently chosen to attack our liberty on another front as well: the blunting of the Americans with Disabilities Act (ADA).

I have in another forum expressed my own frustrations with the ADA. I believe it has problems. But it also has potential. And the best part of the ADA is its promotion of the essential freedoms described in the Declaration of Independence--our inalienable rights as human beings to life, liberty, and the pursuit of happiness.

Our governments are attacking the ADA and our freedoms right now. Once more, the rights of people to live free are being called too costly as they were when advocates first promoted ADA--and as they were when women fought (and fight) for equality, and as they were when blacks fought (and fight) for civil rights, and as they were when immigrants fought (and fight) to be citizens equal before the law. We cost too much, but there is plenty of money to spend other places--take your pick: the military, government itself, corporate welfare, the list goes on and on.

The Declaration Independence doesn't read life, liberty, and the pursuit of happiness unless it costs too much. But let's not be naive about this either. Cost has been a factor since the very beginnings of our government, from the Boston Tea Party to the inclusion of slavery in the U.S. Constitution. We are fighting the battle of all oppressed groups--our oppressors want to change the argument from one of rights to one of economics. We must not let them get away with this.

One of my favorite expressions is "NO ONE IS FREE WHEN OTHERS ARE OPPRESSED."
Though they may not know it, or even care, Kevorkian and his ilk; the nursing home lobby; our elected officials; and many others demonstrate on a daily basis, that none of us are free.

We have a message that has to be delivered today. We will not go away. We intend to achieve those inalienable rights promised to all of us more than 200 years ago. We will not let our hard-won and still incomplete freedoms wither away because someone in government thinks we cost too much or inhabit bodies unworthy of life.

Write, call, fax, and email your legislators and your daily and weekly newspapers today with a very simple message: We are people who want, who expect, who demand, the same rights promised to us as to everyone else from the very beginning of our nation's history. We will accept no less. Do not destroy ADA. Increase community supports. Be a hero. Act to see that each individual lives in the community of their choice--not yours.