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

Friday, May 07, 2004

Changing perceptions to reality

Seymour Sarason the 'father of community psychology' along with John Doris wrote in 'Educational handicap, public policy and social history' (1979)
“Behind all the ways physicians view the retarded infant is the assumption that it creates a social-interpersonal disaster. This ‘diagnosis’ says far more about the value systems of our society than it does about the retarded infant.”
In 'Disability, cultural representation and language,' Barnes (1995) writes,
“In most developed societies it is now widely recognized that the severe economic and social deprivations encountered by disabled people cannot be explained simply with reference to individually based functional limitations.”

These two quotes, separated by 15 years indicate how the perception of an individual influences the life experience of that same individual.

In the first quote, we see the notion of a family member with disability as a disaster. It will take a wise family, who, at the birth of an infant with retardation are treated with pity, comments about how the family will be prayed for, that the parents or child are somehow special, specially selected (or some other inanity), are able to see past all the furor to a reasoned understanding of their disabled child.

Unfortunately no preparation comes with a disabled child's birth. Parents and families are forced to rely on the limited experience they have gleaned from life up to that point. Sometimes there is real life experience with a friend, or family member with disability. More often, perhaps, honest parents of children with disabilities will relate that they gave little or no thought to children with autism or mental retardation in their community until their child was diagnosed with such a condition. That this would be the experience of unchurched community members, from a Christian perspective, might not be surprising. However, for Christians to share that same lack of experience or concern should cause Christians to pause.

A lack of knowledge or experience would imply that persons with disabilities and their families have not been in the "congregational midst" in the local church. Should a child's only knowledge of people with mental retardation or other disabilities be what she learns in the public school setting? Interesting how this important aspect of moral understanding hardly appears on the radar screen of Christians.

In the second quote, we see that the experience of persons with disability cannot be explained solely on the basis of their functional limitations. That is, it might be concluded that their experience has been imposed upon them by society. I am reminded of the days when it was thought that persons with down syndrome were unable to learn. You might reply, "I don't believe it. When did that happen?" Well as recently as 1972 there was a court case in which the State of Pennslyvania took the position that a child with down syndrome could not benefit from a public school education. Ultimately the court decided that it was easier to attempt to educate such children than it was to prove they could not be educated, and special education as a right was born (public school education became a right in 1979).

The individuals who were ultimately educated, who learned to read, and develop skills sufficient to be employed and live on their own were the same before and after the court case. What changed were the opportunities provided and the perceptions of the people around them.

In each of the quotes provided, the authors are advocating change in the environment in which persons with disabilities find themselves. To what extent is the local church a positive or negative reflection of prevailing cultural values about disability? How might a Christian community be different such that the life of an individual with disability is not a family disaster, or limited by anything other than the person with disability's own functional limitations?