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

Tuesday, July 13, 2010

Community Based Isolation

I recently had a meeting with a friend of mine and we were discussing the problems faced by people with various disabilities, particularly intellectual disabilities, who live in group homes in the community. The friend I was talking with said that the people are living in “community-based isolation.” That is, although they are physically integrated into the community they are definitely not socially integrated into the community. In reality they seem to be in a form of protective custody in the community. It's not unlike the way that law enforcement will take an individual who they feel is at risk of harm from and put them in a form of protective custody. This could occur by putting them in a jail cell or in some sort of a hotel room with guards but the idea is that you do not want any harm to come to the individual so you put them in a form of protective custody. The protective custody is fine if your goal for an individual is just to keep them from harm, but a person's life while they're living in protective custody is hardly a life. They cannot move freely about the community and they have the things that they can and can't do determined by those who are facilitating protective custody over them.

So take the protective custody example and move it over to individuals with disabilities living in group homes. The way that this custody is often acted out is that if I am a person who does not like sugary soft drinks I will keep those in my protective custody from having sugary soft drinks. If I'm a person who does not think that participating in a religious group is of importance, I willl not allow you to participate in a religious group because I don’t think it's important for you either. So often with protective custody is not just protection but also as the imposition of values of those who are facilitating the protective custody.

The lives of people living in group homes in the community should never have been designed to be a form of protective custody. Now as I have stated elsewhere in this blog I clearly understand that people with disabilities, particularly intellectual disabilities, often are the victim of people who would take advantage of them and try to use them for whatever their purient interests might be. But while I don't want to just give those who are bad people complete access to do willy-nilly whenever they would choose to do to individuals with disabilities, at the same time I don't want to be protective to the point where those with disabilities have no life because they live in a form of protective custody. They live in a form of community-based isolation.

There are those who think that because someone is physically living in the community that they are integrated in the community but nothing could be further from the truth. On some level what we actually have are little institutions in the community that are called group homes that are either so highly regulated people are living in protective custody or the people who run them are so afraid of litigation that they will not allow a person to do anything that could be in even the remotest way perceived as dangerous because they don't want the legal ramifications of a person having some sort of a problem as a result of access to the community. The end result is that people who are adults with disabilities are treated as children, protected as children, protected as you would protect a little child down to determining what they can or can't do who they can or cannot be with and so they live the life of a protected little child. But these individuals are adults. Adults sometimes do things that they shouldn't do. They smoke cigarettes, they drink too much coffee, they may go places that potentially they shouldn't go. A part of being an adult is the dignity of risk. A part of being an adult is making some decisions for myself which other people may or may not agree with.

I'm sure all of us have at one time or another spoken to someone who smokes cigarettes. Cigarettes have been determined to be bad for your health. However, do I have the responsibility to take the cigarettes from an adult, if a person lights up a cigarette should I pull it out of their mouth and say you shouldn't smoke? The ability to smoke is called freedom, and throughout our history, people have literally given their lives to protect our freedom. Well if I do grab a cigarette out of someone’s mouth, I may have to face the ramifications of that which will likely be a hostile response from the person. I can try, but I really don’t have the right to regulate someone else’s life with my own personal opinion about what that person should or should not do. However because a person has some form of disability those typical societal rules which would not allow me to regulate the life of another people another person are totally thrown out the window and I feel like I have the absolute right by virtue of the fact that a person has a disability to regulate their lives in areas of safety in terms of access to people in terms of even simple like choices like of what to eat at how late to stay up at night. In reality, this is mostly because of the effect their behaviors may have on me and my convenience as the person who is supervising the living arrangements, even though it's all done in the name of safety, in the name of protection, in the name of what's best for an individual. Even stating it in that way it's obvious to see how paternalistic these notions are. However, there is a big difference between what I think a person should or should not be able to do and what a person is able or not able to do.

So once again I am not advocating that all all notions of safety or regulation be thrown out the window. However, at the same time we must recognize that a life lived in protective custody is not a real life and what we're trying to facilitate is that people, to the degree that they're able, have a real life. And when you have a real life that does that mean that you will never be hurt. Of course not Actually the fact that you are hurt may indicate that you are living a real life. All of us disabled or not have at one point or another been hurt in a whole variety of ways whether we have been physically hurt or emotionally hurt or whether we've been victimized on some level or another, by virtue of the fact that we are living a real life. None of us would deliberately desire harm for persons with intellectual disabilities. But the only life where one does not experience any harm is by sentencing a person to protective custody. This sentences a person to not having as real a life as they possibly might have.

Now this blog is about disability and Christianity. So the major focus here is helping people to have as real life as possible by allowing them to have access to the church and the programs of the church. Are there bad people who go to church who could potentially victimize someone with a disability? Of course there are. But the lion’s share of people the majority of people are not those types of people. There is also the safeguard that people who are attending churches are looking out for one another to make sure people are safe. So can people be victimized? Of course they can. Yet at the same time the risk, the dignity of risk that goes along with access to these types of settings is the kind of thing that will facilitate a person having a real life.



Mark said...

I love the phrase you used: "dignity of risk." Who among us would willingly surrender our own risky behaviors on the whim of someone else's notion of what behavior is appropriate for me?
Jesus challenged his questioner by observing that while he was so concerned over the "speck in his neighbor's eye while he ignored the log in his own."
I think about this exact question much lately. My friends with disability have some serious issues to deal with. Many of them moral questions a person with more typical adult relationships would not expect a person with intellectual disabilities to confront.
They face them anyway, regardless of whether we "feel" they should have to. I believe my friends with disability are better served if I am able to equip my friends with wisdom on how to best respond to an issue, than to avoid it altogether.
You don't have to be smart to be wise; great intelligence can, in fact, cloud wisdom. You need only to ask for it; and He will gladly give it.

Anonymous said...

So much of what you were saying in the first few paragraphs reminded me of a parent with a child, before you even brought about that point. Different parents have different views and this influences how they raise their children, just like what you said about the sugary drinks or religious views. However, parents are in the God-given position of raising their children. It is not the same with an ADULT, whether s/he has disabilities or not. This goes along with treating people according to their chronological age rather than their supposedly “mental” age. When an adult with disabilities in a group home wants to stay up later, s/he isn’t seen as practicing normal independence and making her/his own choices, s/he is viewed as rebellious. Regardless of the fact that s/he is an adult! Yes, there needs to be some protection in terms of health and safety, but not to the point that there are no choices and no autonomy. I think there is a way to provide both.

I like what you said about the church. I think the church can even act as a safeguard for those with disabilities against others in the community who might want to hurt them. Families should also act as this. So maybe instead of group homes acting in the positions of “protecting” people with disabilities, their friends, family, and church should act in that position. I would say, as a non-disabled adult, that my friends, family, and church do things to protect me every day. This is a much more natural model than the group home having all of that responsibility.