Professor Paul Steven Miller was a lawyer, professor of law and an advocate for the disabled. He died in October 2011. Professor Miller also had a condition of dwarfism and suffered discrimination in the workplace. His New York Times obituary said,
"Drew Hansen, an adjunct lecturer who taught with Mr. Miller, said his colleague had long been concerned about the carrying out of the 1990 Americans With Disabilities Act. “He believed that judicial interpretations of the A.D.A. were more restrictive than they had been of civil rights laws because there was not a similarly visible mass social movement,” Mr. Hansen said."
Professor Miller felt, as many do, that it is not always in the best interest of disabled people to correct the genetic differences that result in their particular disability. In a presentation at Georgia State University he had this to say:
"Professor Paul Steven Miller Speaker Program on Avoiding Genetic Genocide
February 28, 2008
"Good Intentions and Eugenics: Avoiding Genetic Genocide"
Event details
Audio recording of this event
Professor Paul Steven Miller spoke on "Good Intentions and Eugenics: Avoiding Genetic Genocide" to a packed room of over 150 people in February 2008. Professor Miller has devoted his professional career to fighting discrimination against those with disabilities.
Professor Miller's impressive resume includes roles as the White House liaison to the disability community, President of Little People of America, and one of the longest-serving commissioners of the U.S. Equal Employment Opportunity Commission. Exploring the relationship between the medical and disability communities, he explained that although everyone wants to do what is in the best interest of disabled individuals, what actually is "best" is often understood quite differently by physicians, health care researchers, and people with disabilities.
Professor Miller observed that there are two frameworks used to understand disability: the medical model and the social/civil rights model. The medical model reflects the dominant societal view that illness and disability need medical solutions so that the ill or disabled person can fit into mainstream society. Alternatively, the social model strives to change society to embrace the disabled person as she or he is.
Professor Miller noted that "the advent of genetic technology has a tendency to pull the focus of disability further into the medical-model realm" and that "the disability community is concerned that genetics as currently defined, practiced, and presented to the public reinforces the stigma of disabled individuals as defective individuals." Commenting on the need for the medical and disability communities to understand each other's histories, he also explained:
"The history and social context of the eugenics movement informs how people with disabilities currently view genetic science and medical science as a whole. There is no question that the genetic revolution holds great promise and that today's doctors and researchers have good intentions and want to improve human health for all. But because of the complex historical and cultural context associated with the science of genetics, the medical and disability communities have a difficult time understanding each other."
The lecture was followed by an in-depth question and answer session and a reception where audience members could meet and talk further with Professor Miller."
Many high-functioning autistic people have argued that they do not want or need to be "fixed". They prefer acceptance.
When a person is able to function independently, support themselves financially, and have meaningful and lasting relationships, I see the point. Perhaps they feel that their disability is a part of their identity and that they would not be the same person without it.
However, when a disability results in substantial dependence on family or society for support, physically and financially, when an individual can not express their needs or desires, when their opportunities to enjoy education, work, friendships, family and freedom are substantially limited compared with non-disabled peers, then genetic solutions will be a blessing. Those who want and need a "fix" should have it. Those who feel their lives are fine without a fix, should be accepted as they are.
What do you think?
