“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Thursday, January 28, 2010

"...extension of the processes of control within the capitalist state."

That is how Michael Oliver, the Professor of Disability Studies describes the move from institutions to the community in a 1994 article. He does not see the change as "part of a process of removing some of the apparatus of social control by the state." But an extension of control. I am confident that I don't agree, at least for those individuals with intellectual disabilities that I have known. Perhaps there was more "freedom" within institutions, however, I think chaotic, irresponsible, life without any direction is hardly a desirable alternative to more of a regulated life in the community. His general point, however, I think is well taken. That being that the move from institutions to the community was somwhat of a facade in terms of people truly having their lives changed in terms of approaching more of a typical or normal life. Normal meaning a life like that for the average individual.

However, he doesn't provide an alternative to institutional lives of regulation which is the answer that is really needed. People confined in institutions were "protected" from the community although their protection was not worth the price and was a horror. The shift to community based care was not as Oliver states, a way to save money. If anything it is more expensive if only because of the ratio of care providers to those with disabilities, and the programmatic offerings (good or bad) which are in place.

But his point about extending the processes of control I think I would agree with. Are there capitalist ties, perhaps there are, but I think it is more related to the human condition than it is to our lack of movement toward Marxist ideals as he would desire. I think we see the vestiges of protectionism that occurred at the time of deinstitutionalization which may have provided some level of protection for ex-inmates of institutions, but has now has created new generations of state controlled people, with the venue of control being community based housing/group homes or community based services.

But I wonder about the church. What could the role of the church be, as a free agent not submitting to state regulations in terms of setting up parallel homes or parallel services causing them to be as regulated as any other service. We have tremendous resources within the church, tremendous creativity, but oppressive traditions which do not often allow us to be innovative. We put video screens in the sanctuary and think we are innovative. How about doing something innovative for poor people, or those with disabilities often living in lonliness? One of the beauties of the L'Arche communities as I understand them is the creative model they developed. Yet when they come to America, they struggle to hold on to their identity because of regulations. How might we facilitate community integration that it excludes the governmental regulation, the "processes of control" such that people cease to be commodities that are regulated and be come human beings who just want a regular life?


Friday, January 08, 2010

Regulated lives, regulated relationships

Well, a light came on for me this morning while I was mucking out the horse's pen. I was blessed with the opportunity to address a group of case workers from the Inland Regional Center on the issue of community integration of persons with disabilities. They were a great group and I had a great time. One point that I make in the presentation is that, particularly for persons with intellectual disabilities, their lives are filled with people who are paid to be with them. That always bothered me because I didn't like the idea that the only way I, as a disabled person, might have an interaction with someone, it seemed, is that if the person was paid. Not only that, those who are paid restrict the unpaid people that I might have access to. They make them do things like get fingerprinted, or other things that change them from friends into regulated (although unpaid) people in my life. The touch of the regulated kills the natural. So I don't like that.

But the light that came on for me, and I recognize it is obvious but a subtle point, is that those who are paid to be with me are regulated. So it is not sufficient that they are paid to be with me, but they also are restricted by their menu of services, how our interactions must be structured, when and where they can be with me, what our interactions will be, and so on and so on. They can be with me when they are acting as a professional human service worker, but cannot be with me when they are acting as a regular person. I can only have a relationship, therefore, with professionals who are experts in understanding me when they are acting as professionals. At least that is what they think. They have been so conditioned by their regulators, that the thought of having personal relationships with people with disabilities, simple friendships, never enters their minds. This is a VERY sad state of affairs. People who have the best chance of understanding me as a person with a disability, people who have the most understanding of my disability and how it will affect social relationships, people have the best ability to advocate for me, people who can demonstrate to others how I can be socialized into regular life through their own invovlement with me, are professionally socialized and regulated into thinking that they cannot have a personal relationship with a disabled person.

As I shared with the group from Regional Center, caring case workers would say, "I am not permitted to interact with people with disabilities outside of work. It is not allowed in my job!" Now that is sad because this agency serves thousands of people with developmental disabilities and the perhaps several hundred caseworkers who have chosen this field as a career feel like they can have no person to person (as opposed to person to professional) relationships with any of them. They are also blinded to the fact, perhaps because of their indoctrination, that there are other people with disabilities in the community who might benefit from a personal interaction with them. On one level, I don't blame them for their oversight. They have been so conditioned in their training and by their handlers in their working life about what their relationship with disabled people should be, they almost cannot imagine personal friendships with these folks.

We have now had perhaps 30 years of efforts at integrating persons with intellectual disabilities into the community. Those who live in group homes are the ones I am particularly thinking of. And in my opinion, our efforts at community integration have failed miserably. There are a lot of reasons for this but let me give you two that I am confident are true. First, professionals in human services, either due to their training, or their personal feelings, feel no personal responsibility for having regular friendships with people with disabilities in their personal lives. As a result, those who would have the greatest likelihood of facilitating integration are not doing it. They are expecting others to do something that they either do not want to do or feel regulated, because of their work, out of doing. If the professionals will not have friendships, why would we expect the average person to have friendships? Second, the church is not the player it should be. This is due to problems on all sides. State agencies, once again because of their regulations I would suspect, feel that they cannot use religious groups, use churches to assist in facilitating integration. The "separation of church and state" is instituted in the lives of persons with disabilities. It is actually foolish to think it might be somehow otherwise. How would regulated people with disabilities, regulated by regulated professionals be expected to do anything approaching natural or normal? For normality to come to the lives of those who are regulated, regulations have to be removed or limited. And then, the church has to step up and be seeking out those who need unregulated, natural friendships. In my own life, I want to be able to stay up too late and be tired the next day if I want to. I want to eat too much if I want to. I want to drink too much coffee if I want to. I want to go places with friends when I want to. I want to be in the community when I want to. I want freedom, in other words. People with disabilities, by virtue of the fact that they have a disability, particularly an intellectual disability, loose their freedom. But the loss of freedom needn't be that way. The more programs are administratively convenient, the more freedom is lost. The more lives are regulated, the more freedom is lost.

What is needed is to step away from regulated lives. More "free agents" need to be in the lives of people with disabilities. People who can go off the reservation in terms of offering the natural relationships and consequences of choices that the average nondisabled person experiences. I am so damned tired of people being told what they can or can't do (can't have a coke, can't walk around, can't talk), having their behavior managed as if they were a child, and expecting me as their free agent friend to participate in behavior management by restricting either my interactions or the things I give to the individuals. I am damned tired of people being regulated for no other reason than the convenience of care providers. I am also tired of care providers who want to move toward normalcy being regulated out of offering regular lives, and into the creation of some morphed, prison like, restricted, unnatural life designed for people. In case you don't know, the life created by human service professionals, me included, sucks in comparision to typical, regular lives. I personally do not want people to try to create a life for me that is dependent on boneheaded regulations put together by some politician or beaurocrat. Just leave me alone as much as you possibly can. If you must interact with me, be my professional, but also be sure that I have real friends as that is what I need to have a fulfilling life, perhaps even more than a trained human service professional. And finally, professionals, think outside of the freakin box! If you are not interacting with people with disabilities, befriending them in your personal life, you are failing them and the society who trained you. That society desperately needs you to step up for the betterment of those whose lives have been devalued by the regulations they live under and the very regulated people who serve them.