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

Friday, August 18, 2006

The "embarrassment" of disability

In the book Defiant birth: Women who resist medical eugenics the author Melinda Tankard Reist takes on the notion of prenatal diagnosis leading to abortion through the stories of women who having received the diagnosis that the child they were carrying was determined to be disabled, but chose to have the child anyway. Of course she relates stories of those who were misdiagnosed, however, the thrust of the story is the experience of women who gave birth to children who were born with various disabilities. These disabilities include anencephaly (a disability which typically takes the life of the newborn within hours or days) and of course down syndrome. There are many amazing lessons to be gained. One, for instance relates to carrying a baby with anencephaly to term. Overwhelmingly, doctors would advocate for abortion of such children as they will die soon after birth anyway. Tankard Reist, however, says that if you knew your child would die in an hour or a day, would you choose to kill your child or would you enjoy the hour or day you had remaining with your child? Mothers spoke of their child living his entire life in their arms, of celebrating the 1 day birthday, or the trip home from the hospital. The also spoke of the impact for good the birth of the child had on their lives.

One story really touch me. Written by Elizabeth Schiltz about her experiences carrying, having prenatally diagnosed, giving birth and raising a child with down syndrome. She relates that when she took her baby out into the community there were actual comments made like "Why didn't you have prenatal diagnosis?" She said that many of the stares she received seemed to give the same message. There is a kind of embarrassment with goes with choosing to have a child with a disability, or simply having a child with a disability under any circumstances. Lets think this embarrassment through a bit.

Why would someone be embarrassed about anything in their lives? Perhaps I do something foolish and I don't want to be laughed at. Perhaps I do something wrong and I don't want to be found out. Other reasons could be thought of as well. The bottom line is that I am concerned about what those around me think about me, or my behavior, or my decisions. Teenagers in particular struggle with worries about the perceptions of their peers. As a parent I have often made a special effort with my kids to deliberately be goofy, or silly, or dress oddly in public so that when people look at me strange or if my children say, "People are looking at you" I can respond, "I could care less what people think of me. Am I doing anything wrong? (with my goofiness or whatever). If not I am not going to let them determine what I will do." They are on to me now, and know better, often saying themselves, "I don't care what people think about me." That is good, I think as it develops self confidence, but there is something even better that could happen. What if people would come up to me and say, "I like the way that you express your individuality." That would be an even more powerful witness to being a free spirit.

But that is what Christians, of all people, need to be doing. When we see a child with a disability, we should treat it like any other child we would meet. We should delight in her, play with him, tease with her. If I approach a family in my church or community who has just given birth to a child with down syndrome and say, "I am so sorry, I will pray for you." We don't bless that family, we embarass them when there is nothing to be embarrassed about. They have received the gift of a child that God has given them, often in the face of incredible pressure from the medical profession to abort the child, and our response is to embarass them for their heroic choice. Tankard Reist cites a statistic that 86% of babies prenatally diagnosed as having down syndrome are aborted by their parents. Do you, does the church add to the certainty that those children will be aborted by our embarrassment of parents, embarrassment of people with disability? As stated elsewhere in this blog, are we complicit in the abortion of babies with disabilities through our lack of caring or priority giving to the lives of persons with disabilties?

Those who would reject parents of persons with disabilities for choosing life or would reject people with disabilities themselves should be embarrassed, should be ashamed of themselves, not the other way around. We need to "not be conformed to the patterns of this world but be transformed by the renewing of our minds" ala Romans 12. What have you done in your life to contribute to 14% of families, moms and dads who chose to give life to a child with down syndrome?


Tuesday, August 08, 2006

Reflecting their surroundings

I was in a classroom this morning visiting a student teacher of 10 year old children with moderate to severe disabilities. Some of the children had autism, others cognitive disabilities. As I sat in the back of the room, there was suddenly a lot of screaming from the next room. Ultimately a student was placed in the little office which connected the two rooms. For the next 10 minutes you would hear a calm woman's voice followed with screams of "Shut up b**ch." Over and over again.

In another setting of children with severe disabilities of kindergarten age, there was a boy who didn't communicate other than to say "Hi" on occasion. However, as he moved through his day, he constantly repeated, "F***ing sh*t." That was his complete language repertiore. Knowing the number of times something has to be repeated in order to find its way into such a student's language repertiore, I couldn't help but wonder about the environment these students were living in.

Maybe people around them thought them cute in their nonsensical swearing. However, that kind of language is not thought of as funny in many, maybe most social settings. People who talk that way will never be able to have any job in which they work with customers. You need only tell your boss "Shut up b**ch" once before you will be fired (in case you didn't know).

We, however, in the church need have patience and acceptance for people who use such language while also trying to teach those individuals that such language is not appropriate. However, we must take the position that the swearing cannot be a reason for exclusion from a church setting.

I used to work with kids with serious emotional disturbance. I have been called many memorable things as has my mother, my wife, and anyone else they thought might cause me to get angry. In every case, I have had to repeat to myself, "This is the disability talking. This is the disability talking." Had I rejected them, I would have supported what they were trying to prove to me. That is, basically that they are worthless and that I would ultimately reject them. It is tough when you faced with such a barrage, however, in these cases it truly is the disability speaking.

In the case of the severely disabled children above, it isn't really the disability talking as in the second case, he was doing little more than making sounds that he had heard and had discovered would get a reaction positively or negatively from his environment. In the first case, he learned that that is how you interact with your environment by examples that had been provided to him. His particular choice of language he probably also discovered got the maximum reaction from his environment.

Is the church prepared to include people such as these or are we only willing to take those who act in a particular socially circumscribed manner? If these types of children and adults are in the congregation, how do we prepare congregational members for the things they might say or do? I think it begins by having those people present to begin the conversation. I think people have not been forced to come to grips with their faith in terms of having demands made on them in areas of acceptance and understanding of others. The church environment has in many ways become too sterile.

I need to begin with acceptance and then move to change. I don't begin with change and then move to acceptance.


Sunday, August 06, 2006

200 Posts

Today's entry is the 200th post to this weblog. So what have I learned over the past 2+ years?

I have learned that thare are many people across the country who resonate with the various quotes from authors I have provided here.
I have learned that there are too many people who are frustrated with the relationship they and their family member with disability have with their church.
I have learned that there are churches who do not have disability minstry on their radar screen.
I have learned that there are churches who not only do not have disability minstry on their radar screen they refuse on many levels to add it to their radar screens.
I have learned that what is really needed is quite simple, largely being about relationships.
I have learned that I have a lot more to learn.

As I have been writing a book I am hoping to have published that will probably also have the title disabled Christianity, perhaps the greatest benefit to me in writing is that I am pulling together the various topics of the last 2 years. I ask for your prayers as I move forward on that project.

This summer I have been very busy with a variety of project, however, I hope to get back to more regular postings shortly.

Thank you for your readership!