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commitment to the right to equal access to education, employment, housing, medical services and free access to public accommodations. NCPD is responsible for providing the expertise and consultation that moves this agenda forward. 

Within our national network we have found that most disabled people are as interested in cures as anyone else.  They also seek better tools for living, greater inclusion, respect and recognition of their unique gifts.  But cures attained by immoral means do not enhance the inherent dignity of anyone.  Also, if we take a completely utilitarian view of who and what we are, we will have lost a sense of the unique gifts that our varied abilities and experiences bring into society. 

ON A PERSONAL LEVEL: 

As a woman with various disabilities, including blindness, spinal injuries and inner ear dysfunction, I have spent much of my life learning the lessons and overcoming the challenges of disability.  I have also worked for full inclusion of disabled people in society.   

As a disabled woman, and as Executive Director of NCPD, I have been very public in opposing the harvesting of stem cells from my youngest and most immature brothers and sisters.   However, I welcome and endorse this present initiative.  Like any other disabled person, I am interested in cures, provided they aren't obtained by means that I cannot morally accept.   Also, as a person concerned about the future of society, I am pleased to see a path whereby we can benefit from advances in science while still upholding our essential moral standards. 

I carry the genes for the blindness which knocked me from my academic ivory tower in 1972.  And I may have passed that pattern of visual impairment to my daughter.  Growing up I was surrounded by elderly blind women, all of whom were active in their communities, well educated for their time and place and recognized for their abilities more than their limitations.  I grew up in an environment in which overcoming challenges was considered a characteristic to be admired, not avoided. 

Alzheimer’s disease has overtaken the women of my family.  Both my mother and her sister loved life but would never have chosen to violate their moral sense of what is right in order to gain a few more years of mental acuity.  While I may face that condition in the future, that eventuality is less frightening than a world in which, as a matter of medical intervention, one life can be casually eliminated in order to offer a few additional months of “normality” to another.  In fact, the reality that my abilities are time limited has given me a greater sense of the value of each day and the need to live as fully and productively as possible. 

Additionally, I have neurological impairments, having sustained spinal injuries which limit both my upper and lower limbs.  While an art student at the University of New Mexico, not only was I an aspiring painter, I joined a dance troop.  While it might be pleasant to dance again, be very clear, I am deeply opposed to any gain in my sight, mobility, or even my hearing, if it were to be purchased by mean that violate my moral sense. 

Over twenty years ago I proposed a new and positive definition of disabilities which has been used by advocates in the intervening years:  Disabilities are the normal, expected and anticipated outcome of the risks, stresses and strains of the living process itself.  This definition recognizes that the eventual outcome of the shared fragility of our bodies is the development of physiological glitches at some point in the normal life cycle.   Disability is not something that happens only to the unlucky few but is an event that can be anticipated by us all.

 A SOCIAL PERSPECTIVE: 

 The medical and biotechnology revolution will be even more powerful in its implications than our internet/information technology revolution.  Medical and biological technology can change our very identity as human beings.  NCPD does not propose that we attempt to stop this revolution, only that we carefully consider where we want to go and where we are being carried.  At this point in our history we need to calculate what is essential to human decency and then defend that essence, even hedging it about with an extra margin of caution.   

            This nation was founded on a respect for individual human lives, each with equal and inherent value.  I pray our future as a nation will not involve a repudiation of our past moral stance.  There is a disturbing trend these days, toward a utilitarian view of human lives.  I am hopeful the current drive toward a utilitarian set of “ethical” rules will eventually fall into disrepute, as did the eugenics campaigns of a few decades ago.  Then it was the extremes of the Nazi drive toward development of a “Super Race” that cooled interest in eugenics and allowed recognition of the value of variations in human abilities and disabilities.  I hope the dreams of attaining a “superman” will not again drive us over the edge into social alienation.   

As a nation we need to ask ourselves why a civilized society would seek to overcome its previous moral compunctions about harvesting the unborn.  Is it that our fear of disease, disability and mortality is so overwhelming that we forget or deny what we know is morally correct?  NCPD suggests the frenzied rush to harvest embryonic humans is based upon an undue fear of human fragility, pain, and disability.  (We do naturally fear and avoid any loss of autonomy and anticipated pain, and these fears persist even though both social supports for productive living with disability, and the medical management of pain, have made tremendous strides.) 

         I would remind us that the worst thing in life is not disability, or pain, or even death.  The worst thing I can imagine is to create a society which sees itself as justified in treating people as objects to be used or discarded, as best fits the desires of the moment.   I would not wish to live in such a world.  And the moral choices we make today will surely shape our future and that of all future generations.   We cannot let our frenzied attempts to deny our shared vulnerability cause us to lose our moral guidance. 

SUMMARY: 

Once again, let me emphasize NCPD's strong support for the present initiative.  We welcome this as a sign that scientific progress does not require sacrificing moral standards.

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