Our religious and spiritual communities are often one of the more difficult places for us as people with disabilities to make change. There are many factors contributing to this reality. There are some people who have just never thought much about disability and their reaction to it comes out of ignorance. Some people have such strong fear or discomfort around people who have disabilities that their choice is not to reach out. Still others come from a moral model of disability, believing that disability is a punishment for past sins, their own or others. If it is not a punishment, then it is a blessing and people with disabilities are “special,” in God’s eyes. Finally, some people view disability from a “medical,” or “charity,” model of disability. “Disability is something that should be fixed or cured.”
Recently, I had occasion to speak at my church, which is a Quaker Meeting. The following are my remarks from that day. This text was prepared for an audience that is primarily non disabled and which hasn’t given much thought to issues of disability even though the congregation has a strong commitment to social justice. My hope is that these remarks will help stimulate discussion about disability, religion and spirituality.
Today I hope to get you thinking about perception and reflection in new and different ways, particularly relating to issues of disability and spirituality
One day in a conversation with a colleague with whom I do Diversity training, I said, “why is it that people who have been oppressed don’t always make the connection across the lines of oppression?” He said, “Because people don’t always take the time to reflect long enough or deeply enough.” It’s this statement that has helped me understand why I can make connections between my own experience as a person with a disability and that of a person of color or someone who is gay or lesbian. It also helped me understand why another person who lives with oppression may not make those same connections. There is a major shift in thinking about disability that has happened over the past 30 years. Instead of thinking about disability as a “handicap,” or a defect, something to be fixed or cured, we think about it as a difference. It’s a natural condition of life. It makes us neither blessed nor cursed in God’s eyes. It simply is. We do not have a Dr. King, or Jessie Jackson to lead us. The names of our leaders past and present are most likely unfamiliar to most of you. Ed Roberts, Wade Blank, Irving Zola, Evin Kemp, Judy Heauman, Carol Gill, Paul Longmore, Marca Bristo, Becky Ogle, John Kemp.
Our nightmares are not those of men in white sheets and burning crosses, they are of men and women in white laboratory coats with test tubes and petri dishes. They are of HMO’s that put a price on our lives and then pit us against the bottom line. They are of politicians and bureaucrats whose deepest fear is becoming one of us, but who can’t admit it to themselves, so they mask their contempt for us with pity and block public policy reforms that would enable us to be full participants in society.
Some months ago, another friend told me about a story she had seen about the parents of a disabled child who had sued their doctor because their child was born with a disability. They said that by not telling them about the disability before the baby was born; it was condemned to live a “wrongful life.” There are several issues relating to disability that bring into question the value of a life with a disability.
More often then not, the experience of disability activists is that when people with disabilities and their families do not get the kind of supports they need to not only survive but also thrive, they view disability as “the worst thing that could happen.” The kind of services they need access to are things like personal care attendant services, respite care for family members who are care givers, counseling for depression which some times accompanies disability, and the support of people who have lived a life with disability and who can provide them with a sense of community. Lack of access to these supports can lead to some people seeking out the services of someone like Dr. Jack Kevorkian. Dr. Kevorkian, it’s said has assisted 130 people to suicide. 93 of those have been documented. Most of them were women and about 70 percent of them were people who did not have terminal diseases (‘terminal’ being defined as six months or less to live). Many of them have had chronic illness or disabilities. Kevorkian was tried five times. It took his assisting a man to die on 60 minutes before a jury would convict him. Here are some of their stories. Esther Cohan was 46, had Multiple Sclerosis, and used a wheelchair. She lived in a walk up apartment and had to call the fire department every time she wanted to go out. If affordable, accessible, housing had been available to her, she could have had a life with few limitations.
Matthew Johnson, age 26, was a quadriplegic who had been injured only nine months before his death. Johnson had spent months waiting for his HMO to deliver a wheelchair. It arrived the day after his death at Kevorkian’s hands. Sherry Ann Miller, age 44, had M.S. She lost custody of her children in a divorce because of her diagnosis. She was forced to move in with her parents after being unable to find suitable employment, housing, or personal care.
Then there is the eugenics movement. Not the one that happened during the early 20th century, the one that is happening now under the guise of advancing medical research. Just this week a biomedical company announced it has completed the draft of the human Genome. The map of what it takes to build a human being. Right on the heels of the announcement was a fight over whether genes can be patented. Patenting DNA. We can already manipulate circumstances to predetermine the sex of our babies at the time of conception. The promise of the miracles genetic engineering may bring is exciting. We may be able to cure and or eliminate disease, make it possible to live longer with a better quality of life, even design the bigger, stronger, smarter and faster human. Does this bring back echoes of the past? Where will people with disabilities be in this process? Who would choose to design a disabled child? In a world where genes are patented and those patents translate into dollars, and the search for human perfection reaches new heights, will there be a place for the deaf child, the child with Cerebral Palsy or with Downs Syndrome in this brave new world? In his book, Seat Of The Soul, Gary Zukof says, “Each physical, emotional, and psychological characteristic, that comprises a personality and its body, strong or weak arms, dense or penetrating intellect, happy or despairing disposition, yellow or black skin, even hair and eye color, is perfectly suited to its soul’s purpose.”
If these things are too far in the future to grasp, then think about amneo centesis. A technique used every day to determine the health and viability of a fetus. About five years ago, a survey of genetic counselors found that 60 percent of the respondents would counsel parents to terminate a pregnancy where disability was present in the fetus. I come from a family of nine children. Three of us were born with genetic disabilities. I have often wondered if the choices available to parents today were available when my parents were having their family, what choices they would have made. Eva Cottee, a mother of two children, one severely disabled and one non disabled, is a philosopher. She was asked to write a paper on the question “Does selective abortion on the basis of disability, send a message that a life with a disability isn’t a life worth living?” She says, “I think few things are as difficult for humans as disabilities they themselves do not have. Few differences — not race not gender not religion — are as threatening to a person’s notion of self. A man won’t turn into the devalued woman, a white into the devalued black, a Christian into the devalued Jew but the able can turn into the devalued disabled at the next turn in the road. You would think therefore that prejudice against the disabled would be contained and confined because, after all, at any time I could turn into them. Instead, such a possibility only increases prejudice avoidance and stigma.”
Peter Singer, who became known for his work in the ecology movement, is now the head of the philosophy department at Princeton University. “A specialist in ethics, he goes around the world saying things that start out sounding quite reasonable, derived from a utilitarian theory that dates to the 19th century work of Jeremy Bentham and John Stewart Mill. Then his arguments take the next logical step, and the next winding up at positions that are startling, to say the least.” He believes, “If a human being is not conscious of self, not capable of rationality, not able to conceive of itself as an entity existing over time, then it is not, by Singer’s definition, a person.” Singer advocates infanticide of disabled children. He says that it is the level of a person’s awareness which determines its quality of life. He would advocate that children with conditions ranging from annansefali to spina-bifida, to Downs syndrome and sickle-cell anemia be euthanized and that parents should be given the power to make such decisions within the first 30 days of a child’s life. He would extend this power in some cases to the first 18 months of life.
It is the challenge of those who live with any kind of oppression to “live at the intersection of an issue, where the tension is.” There is a saying about human kind, that “if it can be done it will be done.” Since we have free will and choice in all that we do, the conclusion to any of these issues is not inevitable. As Gary Zukof says, “The achievements of science, in other words, do not reflect the laboratory capabilities of individuals or nations, but the spiritual capabilities of our species.” He continues, “Rather than a soul in a body, become a body in a soul.” Or as Irving Zola observed, “without recognition of its omnipresence through both time and space, we will seek the elimination and prevention of disability as our primary goals, rather than its integration, acceptance, and ultimately, its appreciation.”