Becoming Anti-private

In Everyone has one, Opinion by Jeff McAllister

In considering the recent events related to Terry Schaivo, one can be confronted by many aspects of the situation. We were faced daily with the religious zealots who populated the milieu in most of the television interviews who were carrying signs or singing hymns or praying: each of which are fine activities.

Terri Schiavo

In observing these individuals, one wonders whether their zealotry for saving the life of Ms. Schaivo was in any way equaled by their efforts to enfold persons with various disabilities in the religious activities of the churches they represented.

I don’t know those individuals nor do I want to put myself in a position of judging them or their religious groups. However, I do note that most of the churches that I have attended do not represent the community so when I look at the congregations with a deliberate desire to find persons with disabilities, I generally don’t see them.

So you can’t help but wonder not so much about those who made the effort to protest the taking of a life, but the potential hypocrisy of the churches they represented.

But there was something larger that I noticed. In the debate over the right to take the life of a severely disabled person the decision was almost universally couched as a private family matter. It is a matter between loved ones and their doctor.

Even in the case of Terry Schiavo, the public probably would not have even been aware of the issue should there not have been the conflict between husband and parents over her final wishes. Had they both agreed that the removal of feeding tube was her desire, she would have died in the same manner, but we wouldn’t have known about it.

In the background of the media coverage, over and over people came out of the woodwork and spoke up about how they removed the feeding tube from a mother or grandparent or child. These were all private decisions.

Unfortunately, disability and in particular severe disability is a much too private matter whether by choice or by societal construction fashioned over time. When a child with a disability is born to a family, the family members question themselves and question God with very private questions.

They may confess a sin they suppose was the reason for the disability, another private interaction. They find themselves recoiling from their families and friends because they perceive the birth as an embarrassment, something to be kept private or as something which would cause their friends discomfort.

The typical newborn would be welcomed at Grandmom’s house for babysitting, but the atypical is either not welcomed by Grandmom, or is kept at home because of the desire to not be a burden to Grandmom.

The care of the child with a disability often becomes an all consuming activity to parents, particularly to the mother. Agosta, Bass & Spence (1986) found that 32% of parents of persons with disabilities gave up a paying job, didn’t take a paying job or refused promotion or transfer in a job in order to care for their child with a disability.

One wonders why nearly a third of parents would have to leave work to provide care. It seems the parents of the person with a disability see the child as their primary responsibility alone.

Weisner Belzer and Stolze also found that religious parents were more likely to see their children with disability as their own responsibility versus nonreligious parents who had a greater likelihood of seeing their child with disability as the government’s responsibility.

It is difficult to argue that a child is primarily a parent’s responsibility, but one has to wonder where the community or extended family is in these situations. Where are the church members represented by those who were demonstrating for the life of Terry Schaivo?

In research the author is completing (McNair, in process) approximately 80% of church attendees surveyed indicated that they disagreed or strongly disagreed with the statement “the care of persons with disability is primarily the government’s responsibility.” The rank and file church members don’t see care as the government’s responsibility. So then whose responsibility are these individuals?

Religious parents see the care of their child as their own responsibility which coincides with a cultural background of keeping disability a private family matter. There could be myriad other nongovernmental ways that persons with disability and their families might be supported, but as things are, it’s either the government or the family. Why?

Perhaps partially because as we all know, disability is a private matter, and even governmental involvement can be kept somewhat private.

My personal focus of research relates to Christian churches and persons with disability. I hope someday to see churches reaching out to enfold persons with disability as never before.

For example, church members need to be at the bedside of a family holding a disabled newborn saying, “We have a place where you will be welcomed. We want you and your child to be a part of our church family. We will help you and support you.” At the birth of a disabled child, families are often completely lost and confused.

Knowledgeable people from a church could do great good here. But along the way, I would also like to find out what happened, why churches weren’t reaching out to those individuals in the first place? What happened for a church to look for converts across the globe, but overlook persons with disabilities and their families in their local communities?

When did disability become a family’s sole responsibility rather than a shared community responsibility, particularly within the community of faith?

Such a position is in no way supported by the Christian scriptures, by the example of Jesus, or by standards of morality laid out in the Bible. Yet it is reflected in the activities of the church.

But because of our lack of audacity and our willingness to keep disability private, we have not confronted our communities with the magnitude of responsibility for caring for persons with disabilities.

Because of our lack of audacity and our willingness to keep disability private, people are routinely killed, because such decisions are a private matter.

Because of our lack of audacity and our willingness to keep disability private, we worship the God of all people, the God who says disabled people were created in His image, in a setting uncluttered by them, their wheelchairs, their noises, their imperfect hygiene or their social imperfections. God is angry.

Because of our lack of audacity and our willingness to keep disability private, people languish alone, while the community dismisses its responsibility for helping its neighbor by saying, “I didn’t know.”

Such statements are partially true because we have kept disability private, we have not gone public.

How can we expect change if we are not in the community’s face? Not in a negative manner, but in a manner that would never allow them to say, “I didn’t know.”

Can you imagine what the outcry might have been, had persons with severe disability been more present in the community, if people without disability actually knew a severely disabled someone who worshipped next to them at church.

You know, it is time for persons with disabilities and their families to go public. If nothing else, the Schaivo situation should teach us that bad decisions may result from staying private. Do you want to see community supports developed?

Disabled persons need to start going to church. Disabled people at church can be the beginning of a movement for change. Don’t take no for an answer, and don’t leave.

Churches have incredible potential for change in our local communities and in society. They are obvious agents for community integration, particularly for persons with cognitive disabilities.

But because families who are already sapped of their strength and brittled by discrimination, might get hurt once again by an unkind remark from a church member, or are told there are no services available for persons with disability, they give up and leave, condemning those in their wake.

However, to use the title of this magazine, it’s time for a little Audacity among persons with disabilities and their families in the church. It is time for people to say, “My child has a severe disability and I know your Bible.

Now where do you want us to sit!”

Agosta, J., Bass, A. & Spence, R. (1986). The needs of the family: Results of a statewide survey in Massachusetts. Cambridge, MA: Human Services Institute.
McNair, J. (in process). Christian social constructions of disability.
Weisner, T., Belzer, L. & Stolze, L. (1991). Religion and families of children with developmental delays. American Journal on Mental Retardation, 95, 6, 647-662.
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