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

Thursday, February 12, 2009

Shock and dismay at insensitivity

Well, I am in the process of finishing up some research I have been doing about social constructions of disability.  I surveyed church leaders, then I surveyed church attenders (both articles published in the Journal of Religion, Disability and Health).  The final study I wanted to do (and will do, I might add) is a survey of adults with intellectual disabilities.  I am asking them questions about a variety of social constructions such as whether they are angels, or heroes, or if they have a good quality of life.  However, while having my survey reviewed, the process came to a screaming halt over a question deemed insensitive and inappropriate.  What might that insensitive question be?  The question that I plan to ask adults with intellectual disabilities is...
Do you think mothers should abort babies with disabilities?
The reason why this is insensitive?  I might cause them mental distress, or they might cry, among others.  Another raised the issue of a research literature on this question.  Do you really think that secular academia is in any way interested in the answer of disabled adults to this question?  Do you really think it has been asked dozens of times before?

I related that statistics indicate that 90% of mothers who are prenatally diagnosed as carrying a child with down's syndrome abort, which was greeted with disbelief..."That can't be true"!  I could have gone into neural tube defects, and the looming dangers growing out of the human genome project.  The threat is true, and as Wolfensberger describes, we are in the midst of a new genocide.  But if your group is being systematically identified for death and then are killed, it is insensitive of me to ask whether you think that is wrong because that might upset you.  Damn it!  I hope it upsets you, and I hope your voice of being upset will be heard so that it will stop!  And stop NOW!

But people don't get it.  They think adults are children.  They think they don't care about such issues.  I feel like the chauvinistic man who pats the woman on the cheek and says "Don't you worry your pretty little head about these man issues."  Disabled person, they want me to pat you on the head while people who are like you are being exterminated.  They want me to tell you, "Don't you worry your poor, little head about the countless innocents who are murdered because of social constructions."  But I won't do it.  What I will do although it is in a very very small way, is I will try to dispel the myths that support those horrible acts and do what I can to give you a voice, however small, however insignificant that voice may be.  I don't know how those with intellectual disabilities will respond to such a question, but they will have the opportunity to respond.

My friends with intellectual disabilities, may God give me the ability to give you voice, though it be a whisper, and if it upsets you and makes you cry, that just proves that you are a normal human being because there are many of us who are upset, and cry with you.



Anonymous said...

This is genocide, and it is being practiced on a very slippery slope. How far from suggesting/encouraging mothers to abort babies who will be born with disability is to compellng them to do so, or discarding infants who have the misfortune to be the "wrong" gender, race, or what ever?

The problem is ignorance. People read and believe things they read or see about someone who "suffers" from a disability. I know many people with disabilities, and apart from some who may feel physical pain as a consequense of their disability, the only suffering they experience comes from those who arrogantly marginalize, even dismiss, their humanity.

I hope you find a way to get your questions asked, Jeff, and I hope I can be of some help.

It is situations like these when you realize that there are some ideas so foolish you just have to spend along time in grad school to learn how to think like that. My grandfather would have listened to the challenges of your review board and casually remarked, "There's room for alot of grain at the top of that silo."

RegencyKnitter said...

Those articles sound fascinating, and useful for my thesis work. Could you possibly send me the citations for them? My university doesn't subscribe to the journal of Religion, Disability, and Health, but I can get them through inter-library loan if I have the citation. My e-mail address is AbigailSchindler@gmail.com.

Anonymous said...

I really enjoyed reading your post. It's amazing how many women abort their pregnancy when they find out that they might be carrying a child with a disability. Since being in your class I have a new found respect for people with disabilities and the parents and caretakers that raise them. They are human and having feelings just like all of us.