Access: The Disability Issues Journal - July 2002
Opinion Editorial "Christopher Reeve responds to Dr. Newell"
In his article Christopher Reeve, Utilitarianism and Human Rights, Dr. Christopher Newell accuses me of espousing a "utilitarian agenda" which will have "appalling consequences". He states "Reeves [sic] reaffirms the disablist values which deny dignity to those with impairment". He ends by asking whether I am "really part of a mutually supportive disability community which embraces human rights, or "just someone with a physical impairment".
Dr. Newell's outrage seems to have been provoked by a statement I made on the television program Sixty Minutes, that "the purpose of government in a free society is to do the greatest good for the greatest number of people". Perhaps Dr. Newell mistakenly thinks I mean that government should do the greatest good for the majority, which is quite a different concept than "the greatest number of people".
My purpose is to advocate inclusion, to remind legislators of their obligation to ensure that no law-abiding citizen is marginalized or left behind.
In the field of medical research, that means no government should spend more money on cancer or heart disease simply because more people are afflicted with those diseases than "orphan conditions" such as ALS, spina bifida or spinal cord injury.
I also believe that the insurance industry should be held to a higher ethical standard and that pharmaceutical companies have a moral responsibility to invest in research that may not become profitable.
It is regrettable that Dr. Newell believes my philosophy (which he bases only on my "utilitarian agenda") is "anathema to the international disability rights movement".
For the record, I advocate for care now and cures as soon as possible. The Christopher Reeve Paralysis Foundation, through its Quality of Life program, distributes more than $1 million annually in response to applications for work, travel, accessibility, assisted living, education and recreational opportunities.
In May of this year we opened the Christopher and Dana Reeve Paralysis Resource Center, with a yearly budget of $3 million, funded by the U.S. Congress in partnership with the Centers for Disease Control. It serves as a nationwide source of information for people who are paralyzed for any reason. Information Specialists are available to help patients and their caregivers immediately after an injury or the diagnosis of a degenerative disease; they also provide referrals in response to the needs of anyone who has lived with paralysis for more than two years.
I also have the honor to serve as Vice-Chairman of the National Organization on Disability, the oldest and most respected advocacy group for the rights of people with disabilities in the United States. One of our most important functions is to enforce the Americans with Disabilities Act, which, as Dr. Newell so aptly states, requires us to be treated as "people with dignity rather than [as] sub-human statistics". When Congress passed legislation to create a memorial statue of Franklin D. Roosevelt, we fought -- and won -- a hard battle for him to be depicted in the wheelchair that he had to pretend not to need in public.
When Dr. Newell accuses me of being "disrespectful of the views and experiences of other people with disability", he introduces a moral dilemma that he might find difficult to solve.
I am often called by the relatives of a person who has just suffered a spinal cord injury and wants to die, but they want him to live. What is the proper course of action? Should I intervene and try to convince him that life as a tetraplegic is still worth living? Or should I ignore the situation out of respect for the patient's "views and experiences" with disability?
Thanks to the pioneering work of a scientist in California, more than five hundred paraplegics have learned to walk again by training on treadmills. They are not "cured", but they have gone back to school and work, leaving their wheelchairs behind. Would Dr. Newell consider it disrespectful, or even offensive, to inform others in a similar condition that this treatment (though still a study) is available?
Finally, let me return to the accusation that I do not appreciate "the inherent worth of every person, regardless of extraneous attributes like impairment". That is not true. Dr. Newell will simply have to excuse me if I, like millions of others, prefer not to be impaired.