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

Saturday, October 30, 2010

The segregated church for people with disabilities

I have often referenced the 1 Corinthians 12 metaphor of the Body of Christ in this blog. It helps me to understand my relation to my brothers and sisters in Christ. We altogether comprise that body. Whether I understand it or not, I need you and you need me. For some reason, the parts of the body which I would consider not as important I am told are indispensable. They are indispensable to me and they are indispensable to the body itself.

Now when I consider my real body, I notice that the parts are connected. If I could in some way take my nose, cut it off and put it in a jar in a manner that I have devised to keep it alive, it would technically be a part of my body, but in reality it is not connected. I have a nose, it is in a jar over there. It is alive but it is in a jar over there. Now because I have separated it from myself, I no longer have the benefit of being a body with a nose. If I have separated it a long time ago, I may not even remember what my body was like when it was still attached so that I do not even notice it's absence. At the same time, my nose doesn't know what it is missing by not being a part of me. It is sitting in its jar, alive, thinking it has a pretty good life as a nose. I may even visit it on occasion,
"Hello my nose. You are a part of me but I keep you in this jar apart from me because I detect something about you, a characteristic that you have that makes me separate you. You bring odors into my awareness that I do not like to perceive so I have removed you. You are still a part of my body, but I keep you in a jar over here because the best thing for a nose is to be by itself."

In reality, my nose has no idea what it is like to be a part of the body and I have no idea what it is like to have a nose. The nose brings something to the body that no other part brings. How would I ever know that there is such a thing as a sense of smell, that there are aromas that are floating around out there in the air, if I didn't have a nose. So my nose never finds out what its purpose is because it is separated from me and I never learn about the sense of smell because I have cut off my nose and put it over there. To push this analogy a bit further, the presence of the nose allows me to appreciate beauty that I would never know if it were not there. I would never know the fragrance of a rose, or fresh bread baking or orange blossoms in the spring. Living in SoCal, I would also not be able to detect danger like the smell of a brush fire or a gas leak in my home. I would also not know that I need a shower because I have body odor, or smell of urine. I need my nose attached to myself to be a whole body.

All this to say that I cannot take persons with intellectual disabilities (in particular) and separate them into a separate church just for them. It is flat our wrong from an integration perspective, it is not scriptural using the metaphor shared by Paul above, and it is disables the church as a whole. I need all my body parts present for me to be an entire body. I cannot take some parts and pull them away from the body and think I am doing anything other than stigmatizing those whom I have separated. I have communicated to the larger church body that they cannot be a part of the body at the local church where those who do not have their characteristics attend. They need to be separated, for their own good and for ours as well, I suspect. We are doing them a favor those who have such programs would say.

But I am reminded of Leviticus 19:14.
Do not curse the deaf or put a stumbling block in front of the blind, but fear your God. I am the LORD.
Because of their intellectual disabilities, they do not recognize what is being done to them. They do not understand the harm that is done to them by being separated from all of the rest of us. This separation is part of the social consequences of disabilities which at times can be worse than the disabilities themselves that people face. Separation adds to the wounding of people with disabilities although they themselves may not understand it.

At the same time, the church does not understand the harm that is being done to it by separating people. We corrupt the understanding of people with disabilities for average church members by separating them. We support the ignorance of leadership when we separate people. Part of loving others who may be difficult to love because of social skill deficits and other reasons, is that I need to learn to love those people. I need to gain from the uniquenesses that they bring to the entire body.

But those who segregate, cut off our nose and put it in a jar. We think we can get along fine because we have no understanding of what smell is because it was taken away from us. We cannot even imagine a sense of smell as a body. What is it that the church is not experiencing, perhaps as beautiful and critical as a sense of smell because we exclude those with disabilities at worst and segregate them at best? There are those who remove this critical aspect of who we are from us and we actually thank them for it because sometimes we smell bad odors, and we would rather not have to address the warnings that such odors bring and change. So much better to remove those who make us uncomfortable under the banner of loving and serving them. I honestly doubt whether we do either when we separate, segregate and exclude.


Monday, October 18, 2010

Remembering Brad

A dear friend of mine, Brad Winden died this week. I knew Brad for probably 15 years. He was one of those people in your life that you can be honest with. We had the kind of relationship where we could be truthful with each other, get angry with each other but in the end still love each other.

For example, he asked me to be his payee for Social Security, but then fired me because he didn't like the way I constrained him in his spending habits. All the while, we were friends. He trusted me to the point of being the decision for medical interventions for him, which was not a small deal because Brad experienced many medical problems across his life. I recall the last time he was in the hospital he signaled to me vigorously that he did not want to be on a respirator even though it would be temporary and he would recover. I pleaded with him to leave it in but he insisted on having it removed. Ultimately the machine was turned off and as I stood there with him, he would stop breathing unless I would jostle him. Ultimately, he acquiesced to allowing the respirator to be used and 24 hours later he was able to breathe on his own and no longer needed it.

Brad was a strong willed man who told you what he thought which is one of the reasons I liked him so much. He was the proverbial "straight shooter." His honesty was refreshing.

He was also an amazing servant. He liked to wash my car, probably because living on a dirt road, it was gratifying to see it clean. But he and I had an ongoing joke about the warranty on his wash job. I wanted 6 weeks which of course was impossible, but made for lots of joking and accusations back and forth.

He and I also referred to each other as turkey. He is the only person in my life that I have ever called a turkey and ever will. He would answer the phone "Gobble Gobble" as would I and we could call each other turkey across a crowded sanctuary using sign language.

The love of his life was Lisa and I will not go into detail about the incredible ways that he served her, but let me just say that few men would love and serve their wives in the way that Brad served Lisa. It was very difficult for him when she passed away and he and I would often talk about their reuniting in heaven.

His last evening here on Earth I was with him. He would at times come to classes that I was teaching and share his experiences with my students so they would have a greater understanding of life with a disability. He would always have a profound impact on the students. I asked him if he would like to speak to the students the Sunday before. He looked a bit down and I thought it might cheer him up to meet some new people and have a meal out. That same Sunday, the members of Light and Power gathered around him and prayed for him because he seemed a bit down. At the Wednesday night class, he was a bit tired, but enjoyed the students and they him. He seemed envigorated. After class, we stopped at Starbucks on the way home; he got a hot chocolate. We drove up to his apartment, and although a bit shakey, he used a walker in recent days because he had become a bit unsteady, I assisted him up the steps and into his apartment. I remember I was a bit surprised at the difficulty he had in climbing those 3 steps to get up to the front door. I thanked him for speaking to the students and told him I would see him possibly on Friday when we were planning to have coffee/lunch with Mark. He said he would call me. My last words to him, perhaps the last words he heard on earth, were, "God bless you!"

I will forever be indebted to Brad for his friendship.

I will also be indebted to him for what he taught me about being a person living with disability, fighting human services for services, and being a man of faith who lived with joy in the midst of great physical suffering and medical intervention. He didn't sit me down and say, "Jeff let me teach you about these things." But he taught me nonetheless through his life. I know that he had this effect on many others as well.

He will be missed.


Wednesday, October 13, 2010

"I went to the bachelor party!"

This past week, my son got married. It was a wonderful time. All of his friends were there which was one of the most fun aspects of the wedding, reception and events leading up to the wedding.

One of his friends is a man that my son has taken out for lunch many times. They call each other the "Chipotle buddies" after their favorite restaurant. Anyway, as I watched my son's friend Mark at the wedding, I couldn't help but reflect on the powerful statement his presence meant. My son, basically communicated to all who attended that Mark, a man with intellectual disabilities was worthy of his friendship. He was specifically invited to attend the wedding because he was a person of value to my son, and once again, worthy of friendship. I wonder how many of the people in attendance noted that he was there, asked why he was there (surely he was just someone in the family who had to come, not someone totally unrelated and simply a friend of the groom) and were perhaps surprised to find out who he was and why he was there.

It was fun also, because the night before we had a big barbeque/party at our house and Mark was once again invited to that celebration. He participated in the various activities of the evening, ate too much like the rest of us and stayed up late. In fact on both nights, he didn't get home till after midnight. He went around the following Sunday telling everyone that he had been to Josh's bachelor party. Although not entirely true, he was with all his friends and family.

Not to make too much out of this, but Mark as a 50 year old man had been invited to the first wedding of his life (see Wolfensberger 2000's wound #15) and had been given the socially valued role of "friend" at a wedding. But not just any friend, a friend of the groom who had been specifically invited by the groom to be at the wedding. Might be a small thing to you but this was a very big deal to Mark and to me as well. I wish more people with intellectual disabilities in particular, could experience the role of "friend of the groom" at a wedding.