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

Tuesday, July 13, 2010

Social consequences of disability

I have written elsewhere in this blog about what have been called the "social consequences of disability." That is, how does society respond to the fact that someone uses a wheelchair or has autism, or has an intellectual disability. See for example this posting Social Healing or here Social Role Valorization and Wounding.
Both of these postings provide great detail about the social consequences of disability.

I have been thinking about social consequences in reference to 2 Corinthians 12:10. It reads like this in the NIV.
That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
This is the closing statement of a section where Paul describes the "thorn in my flesh". I am not a Bible scholar, but I don't think it is too out of bounds to think about the experiences Paul had in his life related to the quote above, at least in part due to his "thorn" his disability.
It is interesting to read the list of the 4 experiences that fall under the heading of weaknesses and think of how his experience of disability at least in part is reflected in those weaknesses.

In insults. There are so many forms of insult that persons who are affected by disability experience. Of course there are the out and out verbal insults, however, there are also the jokes, the mocking and the just general treatment people will receive simply because of their differences.

In hardships. Hardships are part of life for people with disabilities, just about independent of the type of disability one has. Many hardships are avoidable if society were only different.

In persecutions. There is much in literature which describes the experience of persecution that people with disabilities experience. Should they be Christians, they can only expect that experience of persecution to increase. Persecution is without a doubt a social consequence of disability.

In difficulties. Be they intentional or otherwise, the experience of disabilty is an experience of difficulty. One need only look at the various systems designed to help by governments and societies to get a first hand picture of difficulties.

So Paul understands the experience of living with the social consequences of disability. But his response to this is amazing. "I will boast gladly about my weaknesses, so that Christ's power may rest on me." That is his response to God's telling him, "My grace is sufficient for you, for my power is made perfect in weakness."
That is my prayer for people who are experiencing the insults, the hardships, the persecutions and the difficulties leveled against them because of differences they have in their lives which have come to be called disabilities. My prayer is that God's power would be evidenced in their weakness, be perfected in their lives through their weakness.
Let me also say, however, that my prayer is that we all will work to lessen the social consequences of disability to the degree we are able. Sure, God's power can be seen in the weakness of persecution, but I needn't be the agent of the persecution or hardship or insults or difficulties that people face. It could be that part of the grace God dispenses in the lives of persons experiencing disability is what I do in attenuating the social consequences.
But it should comfort you if you are reading this entry and you experience a disability that Paul, writer of books of the Bible, great man of faith, knows something of your experience, and in the midst of it, found strength to face the difficulties of his life through the grace of God, even seeing God's strength through his weaknesses to the point of making that a cause for boasting.


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.