Community Integration

This week I am headed up to Montreal for a conference on social inclusion of persons with disabilities, particularly those experiencing mental retardation. As I plan to attend the conference I am increasingly more confident about the role the Church has to play in the community integration of persons with disabilities and their families. It is pretty easy to make the case for Christian churches (and most other religious groups for that matter) as the place where disenfranchised, devalued individuals can find integration into the community.

If you think about the Church, it exists to worship and serve God, to do what is right as well as it can understand it, and to support its membership. We have also received a call to go out into the world and make disciples of all nations, so there is an outward focus as well. In each of these areas, the inclusion of persons with disabilties makes perfect sense. They worship God, they try to do what is right, and are quick to help others if given the opportunity. I have found that they also do what they can to speak to others about God, or at least have a positive witness. Through simple efforts on the part of the Church, community integration might also be facilitated.

The secular human service world is pretty much desperate to find ways in which persons with mental retardation can be integrated into the community. All the while, there is the ubiquitous presence of churches. Those in human services, particularly those in academia who prepare human service workers are often unchurched or have a negative perspective towards all things religious. On the other side, the Church is blind to persons with disabilities, quite often, and is blind toward things related to disability. Over the years, I have been trying to help the secular see the potential of things religious and the church to see the potential in things "disabled." God willing, one day, the two will come together and the outcome will be beneficial for all three. The secular will see the benefit of integration through the church, the church will see the benefit of being obedient to God in including persons with disability in the church and the persons experiencing disability will have the benefit of knowing what it is to be integrated into the community rather than being ignored or discriminated against. As I have said elsewhere, one day the involvement of persons with mental retardation in churches, their referral to a church by a secular agent of the state may become as obvious as taking an aspirin for a headache.

McNair

"The ministry is already full"

I heard an interesting, true story the other day. A person was being interviewed for a position as an assistant to a ministry to persons with disabilities at a local church. In the midst of the interview, the person from the church doing the interview asked something to the effect, "Why does that ministry need to grow. The ministry is already full."

Now this comment is interesting and appalling from a variety of perspectives. How does one know when one's ministry is full? A room might be full or a theatre might be full, but what constitutes a full ministry? Are all the people who might be served already being served? That would be great if it were true. What if we were talking about children. "Don't bring your children to church, our ministry is full." Or High School students..."We will no longer be allowing you to bring visitors to the High School program because that ministry is full." Can you imagine, if the church was doing a ministry to a particular ethnic group, and the comment was made, "That ministry is full." In other words, we have enough of those people down here. "Our ministry to white Irish people is full (I'm Irish)." "We don't need anymore Irish people down here." I would never be allowed to get away with such a statement. However, because we are talking about people with disabilties, I as a person of authority in a church can say with confidence, "We have enough disabled people here. No need to bring in any more. The ministry is already full."

This is the discrimination which periodically rears its ugly head in the church and could easily be passed over if someone wasn't sensitive to the issue. The fact that someone could say such a thing is amazing.

One note, this blog starts my 3rd year of blogging at this website. I have seen some significant changes nationally and in my own church. I think this is truly an idea whose time has come. There appears to be greater interest and receptivity. I also wanted to mention that I am working on putting many of the ideas together into a book form which I hope to have published at some point. Should things progress in that area, I will let you all know via this website.

Thank you for your interest over the past 2 years.

McNair
(fcbu)

Removing the feeding tube

I just heard that a lifetime friend of mine who had fallen into Alzheimers disease has possibly had her feeding tube removed. Both she and her family are absolutely wonderful people. They have been a model for me of love and caring in an extremely difficult situation. But apparently the disease has progressed to the point that the decision to remove the feeding tube has been made.

I must admit that I am very conflicted on this whole issue. Knowing these friends the way I do, only adds to my conflicted feelings.

On the one hand this is the active taking of a life. There is no way to remove food from a person without having the effect of taking his life. So this is a conscious decision to take a life, to kill someone to put it bluntly. When I state it in this manner it seems obvious that to remove the feeding tube is wrong.

Yet, if a person is at the end of her life as my friend is, is it humane to deliberately take her life? The fact that I would even entertain such a question makes me wonder about the degree to which I have bought a secular, liberal society's understanding of the value of life in its various forms and its various stages. Clearly my friend is not suffering by any measure that can be made. So the suffering that is being alleviated is not hers. Who knows where her mind is at this point in time? Is she better off dead? The death process will be made "easier" through the delivery of pain medication. The apostle Paul when confronted with the choice between life and death says that he doesn't know what he should choose. He says to die is gain. Should I usher others into death because I believe to die is gain? I hardly think so.

For myself, I would of course hate to be a burden to my family. Particulary me as a large person would be difficult to care for, to move around. However, I also would not want the taking of my life to be at the hands of my family. Because society would allow my wife to remove the feeding tube from my body, does not mean that I would want my wife to have my death on her hands no matter how humanitarian she might think she was being. You see it is one thing to remove various life supports from me such as medicines or other dramatic measures to keep me alive. It is quite another thing to stop feeding me. If food is keeping me alive than I am no different than anyone else. I am no different from children with severe disabilities. Your decision to stop feeding me now becomes based upon your judgement of the value of my life.

What criteria might you use to make a determination of the value of my life? Perhaps you might use a return on investment criteria, or my potential contribution, or something of that sort. The question is why would you enter into this discussion in the first place? Why would you enter into a discussion of how to determine whether someone's life is worth living? Particularly when you cannot get the perception of the person themselves who are living under that set of conditions. Additionally, as soon as we enter into the discussion, we affirm that there are some lives worth living and some which are not and those who would take life win the point. Perhaps a better position would be to simply say that I will not have this discussion because I know where it leads. Are we unwilling to say that all life is valuable and precious, or can we be brought to a point where we will say that a particular life no longer has value, based on a set of criteria which we would probably not be willing to see more broadly applied?

I have mentioned before that I am reading a book called "By trust betrayed" which is about the taking of the lives of persons with various disabilties during the time of the Nazis in Germany. Yes there was great evil involved in the practices which led to the deaths of hundreds of thousands of persons with disabilties. But there were also many who felt they were providing humanitarian aid to people they perceived as suffering. So there were those who honestly felt they were humanitarians of the highest order (the difficuly of their decisions only adding to there love for the people they chose to euthanize) when they sent people with epilepsy or schizophrenia or mental retardation to their deaths. It seems that there was also the proverbial "slippery slope" where the killing of the most severely disabled led to the killing of less disabled and less disabled, etc.

Are people better off dead? Would we be willing to have the process we moved through to make decisions to stop feeding someone be broadly applied? Are we willing to have death on our hands, independent of absolute love and desire for the best for a person that went into such a decision? Is it really heroic on our part to make a decision for death for a loved one who we perceive is living a life not worth living? Should I put such a decision on a loved one?

These are the questions that swirl through my mind as I think about such situations.

McNair

Crash again

In the previous post, I related the scene from the movie Crash about the white cop and the black hitchhiker. Please revisit that description.

Another aspect of that interaction intrigued me. I suspect that the hitchiker thought he was connecting with the cop, or at least thought he was attempting to connect with the cop. He talked about how he liked hockey, which he was socialized to think was a characteristic of white people. He also gave the impression he was developing an interest in country music. Once again, a good old white boy, driving an old car, the hitch hiker thought he was connecting with the cop when in reality he was illustrating his misperceptions about who white people are (true the cop was listening to country music on the radio).

We do the same thing with people with disabilities. We assume we know something about them because of the things we have been told, the way we have been socialized.

My daughter Amy and I love the film Good Will Hunting ("How do you like them apples!?). One of the scenes which we love is when Robin Williams' character confronts Matt Damon's character who has intimiated that he understands what it is like to have the life experience that Robin Williams has had. Williams' character asks whether Damon knows what the Sistine Chapel smells like because he has read about Michelangelo, or what it is like to hold a dying friend during a war because he has read War and Peace, or to go through the cancer of a loved one because he knows something about cancer. Williams also asks whether he (Williams) would know what it is like to grow up as an orphan (like Damon) because he has read Oliver Twist. The answer to all of these questions is obviously NO. Yet the Damon character acted as if he understood Williams without any life experience.

We do that. We do that all the time with people with disabilities. I must constantly remind myself that many of my friends experiencing cognitive disabilities see themselves as totally normal. My friends with down syndrome see themselves at TOTALLY NORMAL. They are living their lives and are pretty much happy with their lives. Others, however, think that they know what it is like to be disabled so they want to "alleviate their suffering" through abortion. They think they must be upset with their lot in life. They think that their disability consumes them. I don't know how to say this any more clearly.

THEY SEE THEMSELVES AS NORMAL.

There is nothing immoral about their disability or their perception of themselves in that way. It does no harm to me or anyone for them to see themselves as normal. It doesn't cost any more money for them to see themselves as normal. Yet we project our ideas on them and attempt to interact with them on the basis of our stereotypes and constructions of who we think they are.

What has the Church intimated about how it feels about people with cognitive disabilities? Do our actions indicate that we think they are just people? Does the Church's interactions in any way indicate that it sees people with disability in the way people experiencing disability see themselves? Or is the Church like the Matt Damon character, who having no experience, thinks he knows something? Matt Damon had an excuse as he was an impoverished orphan living in slums. What is the Church's excuse for not knowing or understanding?

What will it take for the rest of us to see people experiencing disability through their own eyes?

McNair
(fcbu)

Crash

I finally had the opportunity to view the movie Crash, recent winner of the Academy Award for best picture. I found the film very thought provoking on a variety of fronts, however, one scene in particular struck me.

Throughout the film, you get to know a character who is an reflective/thoughtful African-American man who is the brother of a city lawyer and a car thief. You also learn that he does 3 things which the film portrays as uncharacteristic of a black man 1) he loves hockey, 2) he has a developing interest in country music, and 3) either he is Catholic, or simply has an interest because he carries around a St. Christopher statue that he puts on the dashboard after he steals cars. Anyway, in the scene which interested me, an off duty white police officer, a young idealist who has recently raised complaints about racism on the LA police force, picks up the car thief who is hitch hiking. In the course of the conversation, the black guy mentions that he was in the area of the town ice skating because he had always wanted to be a goalie. The white idealist doesn't believe him. The black man says he is developing an interest in country music which once again the white guy doesn't believe. Then the black guy looks up at the dashboard, and there is the same statue that he always carries around. He just starts laughing. The white guy gets angry and tells him to get out of the car, he thinks he is being mocked as no black man, likes country music and wants to be a hockey goalie. The black guy says to hold on as he reaches into his pocket to get the statue that he always carries of St. Christopher. At that point, the white guys tells him to keep his hands where they can be seen, but he keeps digging in his pocket to get the statue. As he pulls it out of his pocket the white guy shoots and ultimately kills him. The statue falls out of the black guy's hand.

As an observer, you sit there stunned. How could this happen? The complete disconnection between two people is perfectly illustrated. It is as if each of them approached the other through the socially constructed stereotypes they had been socialized to believe and when the black man in particular, did not meet the stereotypes of the white man we end up on very uncomfortable ground, where we don't know how to act or relate. In spite of the evidence otherwise, we act on our stereotypes. In the off duty cop's mind, the black man was obviously in the area of town, not to ice skate, but to rob or be involved in some sort of criminal activity.

How do we see persons with disabilities? What stereotypes to we bring to our interactions with them? What do we do when they do not meet the stereotypes we have for them? For those of us who are working to change the Church, what negative stereotypes do churches and those in leadership bring which result in the demise of those they would claim to help. In reality, the white cop was apalled at racism when he saw it. In the same way, the Church speaks of all people being equal and loved by God. But ultimately, when confronted with a real person, the white cop's racism came through as well. He wasn't specifically harassing people, and was even trying to help people who had been victims of racism (another of the movie's powerful scenes). But inside, he was capable of killing another person largely on the basis of his racist stereotypes which were just below the surface. The church also has discriminatory stereotypes, particularly about people with disabilities, which are "killing" people through their exclusion.

In the same manner that Crash expertly puts the finger on racism and race relations, we must do the same with discrimination against persons with disability where ever it might appear, but particularly within the Church.

McNair (fcbu)