Disability, Honor, and American Citizenship

I wrote recently that radical decisions have already been made regarding the value of disability life. Bill Peace writes at “Bad Cripple” about the nuanced alienation many in the disability rights movement feel as we honor the anniversary of Dr. Martin Luther King Jr’s “I Have a Dream” speech. I believe a good measure of this alienation in the disability community concerns honor itself–honor as a verb and as a noun. The distinction reflects political inaction in the first instance and a lack of nobility in the second.

 

Spinoza said (famously): “So experience itself, no less clearly than reason, teaches that men believe themselves free because they are conscious of their own actions, and ignorant of the causes by which they are determined.” Dr. King’s rhetoric in August, 1963 was driven by the irony that free will and human consciousness must sometimes be reacquainted and culture (remains) the cause of ignorance. Against this Americans have always believed logos and ethos are the underlying means and necessities of discourse. In America we are free because we say so. We are conscious of our freedom, aware of our actions, and mindful of what impels us to action. I won’t presume to speak for Spinoza but feel safe saying free will and action form a singularity, dependent on reason, necessitated by life as we find it.

 

This is not news for people with disabilities. Ask the folks at “Not Dead Yet” or ADAPT about essential action. But the nature of honor as a verb reminds us that life as we find it requires our fullest principles, not merely some of them–for honor like art holds a mirror up to nature, human nature, and lordy human nature is the most savage place of all. In the United States honor as action means more than “what is good for the majority of people”–more than the utilitarian semblance of ethos–for Jeffersonian democracy is built on the endlessly renewing and always radical assumption that all are created equal. Honor as verb must enact or assert this in America. One recalls Dr. King saying: “An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.” Honor in action is inclusive and means walking in the light of creative altruism as King called it. Certainly a decision by GOP leaders to skip the King commemoration displayed a failure to commit to honor in action, but I think the absence reflects something worse: honor taken as a noun means high respect or esteem. If free men are conscious of their own actions than choosing to forgo respect is both revealing and alarming. From this disabled man’s perspective the absence of action, a disinclination to embrace the national ethos that says we’re created equal means precisely what I think it means: “I’ve got mine, screw you.” I’ve got my gated communities; my private health care; my designer doctor; my personal jet; my children have legacy schools and fiscal opportunities–I’m sorry the list is so long.

 

Yes radical decisions have already been made in some circles regarding the value of disability life. As Marsha Saxton has written:

 

“It is ironic that just when disabled citizens have achieved so much, the new reproductive and genetic technologies are promising to eliminate births of their kind — people with Down Syndrome, spina bifida, muscular dystrophy, sickle cell anemia and hundreds of other conditions. The American public has apparently accepted these screening technologies based on the “common sense” assumptions that prenatal screening and selective abortion can potentially reduce the incidence of disease and disability and thus improve the quality of life. A deeper look into the medical system’s views of disability and the broader social factors contributing to disability discrimination challenges these unexamined assumptions.”

In effect the “nuanced alienation” from within the disability community referenced above is a direct result of the tacit acceptance within the American medical community that disability life is secondary life, or burdensome life. Saxton writes:

“It is clear that some medical professionals and public health officials are promoting prenatal diagnosis and abortion with the intention of eliminating categories of disabled people, people with Down Syndrome and my own disability, spina bifida, for example. For this reason and others that I will consider here, many disability activists and feminists have come to regard selective abortion as “the new eugenics”. These people resist the use of prenatal diagnosis and selective abortion.

The resistance to selective abortion in the disability activist community is ultimately related to how we define ourselves. As feminists have transformed women’s sense of self, the disability community has reframed the experience of having a disability. In part, through developing a sense of community, we’ve come to realize that the stereotyped notions of the “tragedy” and “suffering” of “the disabled”,result from the isolation of disabled people in society. Disabled people with no connections to others with disabilities in their communities are, indeed, afflicted with the social role assignment of a tragic, burdensome existence. It is true, most disabled people I know have told me with certainty, that the disability, the pain, the need for compensatory devices and assistance can produce considerable inconvenience. But the inconvenience becomes minimal once the disabled person makes the transition to living an everyday life. The fact is, it is discriminatory attitudes and thoughtless behaviors, and the ostracization and lack of accomodation which follow, that make life difficult. The oppression, one way or another, is what’s most disabling about disability.

Many disabled people have a growing but still precarious sense of pride in an identity as “people with disabilities.” With decades of hard work, disability activists have fought institutionalization, discrimination in employment and education, transportation and housing. We have fought for rehabilitation and Independent Living programs, and proven that disabled people can participate in and contribute to society.

 

As a political movement, the disability rights community has conducted protests and effective civil disobedience to publicize our demand for full citizenship. Many of our tactics were inspired by the women’s movement and the black civil rights movement in the 1960’s. In the United States, we fought for and won one of the most far-reaching pieces of civil rights legislation ever, the Americans with Disabilities Act (1990). This piece of legislation is the envy of the international community of disability activists, most of whom live in countries where disabled people are viewed with pity and charity, and accorded low social and legal status. Disability activists have fought for mentor programs led by adults with disabilities. We see disabled children as “the youth” of the movement, the ones who offer hope that life will continue to improve for people with disabilities for generations to come.

In part because of our hopes for disabled children, the “Baby Doe” cases of the 1980’s caught the attention of the growing disability rights movement. These cases revealed that “selective non-treatment” of disabled infants, (leaving disabled infants to starve because parents or doctors choose not to intervene with even routine treatments such as antibiotics) was not a thing of the past. 6 In this same period, we also took note of the growing number of “Wrongful birth suits” — medical mal-practice suits brought against physicians purportedly on behalf of disabled children by parents who feel that their condition should have been prenatally identified. These suits claim that once born, disabled babies are too great a burden and the doctors who failed to eliminate the “damaged” fetuses or babies should be financially punished.

But many parents of disabled children have spoken up to validate the joys and satisfactions of raising a disabled child. A vast literature of books and articles by these parents confirm the view that discriminatory attitudes make raising a disabled child much more difficult than the actual logistics of their unique care.

Having developed a disability-centered perspective on these cases, disabled adults have joined with the views of many parents of disabled children in challenging the notion that raising a child with a disability is necessarily undesirable.”

What’s missing of course in our general discourse is the presumption of competence, which brings us back to Dr. King’s speech for he was saying precisely this–we in America judge people by the content of their character and not by the color of their skin or the visibility of their crutches. To believe less than this lacks honor, honor in the second sense, as noun–to believe less than this is to be a man or woman without nobility.