CALMING THE FEAR AND FRENZY:
An Analysis of Stem Cell Research From A Disability Perspective
by Mary Jane Owen, TOP, MSW
Executive Director
National Catholic Office for Persons with Disabilities
McCormick Pavilion
415 Michigan Avenue, NE Suite 240
Washington, DC 20017
Tel: 202/529-2933
Fax: 202/529-4678
ncpd@ncpd.org
www.ncpd.org
Before THE SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES AND EDUCATION of the SENATE COMMITTEE ON APPROPRIATIONS
April 26, 2000
INTRODUCTION:
First, I wish to thank all who have welcomed me to appear before this important Committee to offer testimony on an issue with profound social, medical, and most of all, moral implications.
I am Mary Jane Owen, the Executive Director of the National Catholic Office for Persons with Disabilities, a national organization charged with creating welcome and justice, within the church and the total fabric of society, for over 12 million Catholics with disabilities. This mission requires extensive travel, speaking and writing, which I have been able to do despite--or possibly better--because of being a blind, partially hearing woman with neurological and spinal impairments which require use of a wheelchair.
Over a half century of my working life, I have been a psychiatric social worker, a professor of social research, a federal administrator, a free-lance consultant and a businesswoman. More importantly, I have been a participant observer in the difficult decades of change and progress as our society has created new options and opportunities for people with disabilities. Remarkable changes have taken place, including passage of the Americans with Disabilities Act, an effort in which I worked, along with thousands of other disabled people in our search for fuller participation within our society.
I am here to urge you: Do not, in the name of progress for disabled people, certify or justify the destructive harvesting of human embryos for stem cell research, a practice both immoral and unnecessary.
While disabled people are interested in cures, as well as better tools for living, greater inclusion in society and other possibilities which will improve our quality of life, we are not so desperate for cures that moral considerations disappear.
Do not use our struggles and aspirations to justify an immoral policy that will encourage the destruction of unborn babies. Instead, direct researchers to use the many alternative sources of stem cells so that this promising area of research may be developed in an ethically defensible manner!
MORAL CONSIDERATIONS:
Congress determined once, and I believe rightly, that harvesting fetuses is wrong. There are many moral reasons for this. In addition to the opposition to abortion itself, shared by many Americans, there is also the conviction that human embryos and fetuses should not be harvested lest they come to be seen as products for sale.
This is not an insignificant issue. 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. I do not propose that we stop this revolution, but I am confident we must carefully consider where we want to go and where we are being carried by frenzied attempts to deny our shared vulnerability.
Technology, commerce and science are all pushing us inexorably in the direction of regarding human beings as products. We need to consider if we continue down this slippery slope, are we ready to justify the creation of human beings for spare parts? We are forced to ask this question today, for the possibilities lie just ahead. Researchers are already harvesting fetuses, and their so-called utility has already become part of the moral calculus of abortion. Now the demand for live embryos for stem cell harvesting threatens to become part of the moral calculus of fertility treatments.
Yes, medical progress is desirable. Yes, new research vistas require new ethical guidelines -- But I pray they will NOT involve a repudiation of our past moral stance and move toward an exclusively utilitarian set of "ethical" rules. We must carefully calculate what is essential to human decency and then defend that essence, even hedging it about with an extra margin of caution. We Americans disagree about many things, but most of us consider the idea of harvesting fellow human beings for the advantage of the few as abhorrent. Let us respect that moral intuition and the traditional values upon which it rests.
There are medical experts who will assure us we need not sacrifice scientific progress because of our abhorrence of a utilitarian approach toward human life.
THE ALTERNATIVE SOURCES OF STEM CELLS:
It is clear that researchers should have access to stem cells. The issue is: why embryonic stem cells? Some would claim that refusing to subsidize this particular kind of stem cell research would unduly hamper medical progress. However, there are many other sources of these vital human tissues which give clear indication of their potential for positive results. Some would even avoid the possibilities of rejection which are inherent in the use of tissue not recognized by the host body.
Exciting possibilities lie ahead in making use of self-contributed stem cells, as well as those harvested as a result of necessary surgical interventions, tissue contributed by consenting adults and the by-products of natural births.
THE PUSH TO BETRAY THE UNBORN:
Congress has already attempted to prevent federal funding for harmful human embryo research, but now the issue has arisen again, and some say it is urgent to allow and encourage the use of embryonic cells in research. What has changed since that earlier decision? Yes, research possibilities have opened up but every day we are learning more about alternative sources of stem cells.
And so we are forced to ask ourselves why a civilized society would seek to overcome its 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? I am suggesting the frenzied rush to harvest embryonic humans is based upon an undue fear of human fragility and disabilities. We fear anticipated pain. Yet we know that management of pain has made tremendous strides in the past few years.
I witness society's fear and anxiety about disability every day. I have often been amazed by strangers who approach me to confide that they would rather be dead than become blind or use a wheelchair. Aside from the bluntness of these remarks, what surprises me is that many people can not imagine that I have a happy life. And yet I am as happy, as successful and productive as anyone I know. It seems obvious to me that their fears about their own future disabilities keep them from seeing the reality of my life--and the possibilities for all people with assorted disabilities.
In my lifetime I have also observed our medical system negate the idealism of the Hippocratic Oath and move from viewing its services as having ties to charity. Within a for-profit enterprise, the view that some human lives are potential "product" may be tempting but it is still immoral. The sacrifice of some human lives for the benefit of others must be defined as illegal, as it has been in the past.
My view can be summarized thus: Many of my fellow citizens suffer unduly from fears and frenzied anxiety about assorted disabilities and fragilities.
A NEW UNDERSTANDING OF DISABILITY AND VULNERABILITY:
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.
The eventual outcome of the shared fragility of our bodies is the development of physiological glitches at some point in the normal life cycle. Disabilities are not something which happens only to the unlucky few but is an event which takes place for us all. We may face this eventuality before birth, in early life, during the height of our productive years or at the end of life. When we view our shared vulnerability with these conceptual lenses, we understand that the principles of universal design should be considered as we modify our environments, programs and institutions.
Broadly available medical services, rehabilitation techniques and technology and the evolving expectations of millions of American citizens with disabilities can revolutionize the future status of those millions of Americans who are destined to experience physical, cognitive and sensory limitations. Public recognition and support of these alternatives can relieve the rampant anxiety evident in the frenzied pursuit of "cures" at any moral cost.
Unfortunately, the picture of life with disabilities often seen in the popular media and skillfully utilized by those segments of our population seeking to deny the essential dignity and value of all human life, are generating the current pressure to authorize destructive harvesting of stem cells from embryos as essential in our struggle to prolong our productive lives.
We are not manufactured like Ken and Barbie, expected to fit a model of physical perfection; required to be uniform in all those characteristics by which we might be judged as having value. We are not fabricated of high impact plastic. When a single Ken or Barbie appears on the production line with even a tiny flaw, the results are thrown into the recycle bin. That member of the Mattel family will be broken down into its component parts to be used again in the ongoing effort to reach uniform perfection.
In contrast to that process, each of us was uniquely and individually created. For those of us who are Christian, we believe that this variety in abilities and strengths, disabilities and weaknesses, in some mysterious way which we can not fathom, reveal some essential part of our Heavenly Father. Other faith and cultural groups confirm the normality of assorted "imperfections." The beautiful Navaho rug that hung on the wall of my childhood home was woven with the traditional "flaw" which marked it as reflective of the traditional belief that only the "Creator" was perfect. As I traced that defect in perfection, it comforted me as I dealt with the minor disabilities caused by an early bout of meningitis.
Not only are we created to be unique, we are created of extremely fragile material. We may be born without disabilities, but we must anticipate that at some point in our lives we will be forced to recognize our shared vulnerability. That recognition can inspire us to acknowledge our need for each other and for the Creator. It may also move us to cherish those of our community who are in need of assistance, medical services or rehabilitation.
Many of us unfortunately believe that disabilities are a cosmic accident which we must correct. I agree that we must work to do what we can to reduce or prevent disabilities, using morally defensible means. Much progress has already been made in prevention, treating or even curing a variety of disabling conditions. However, I would affirm we would never completely eliminate the vulnerability of the human organism nor would it be such a great blessing if we could. My personal experience convinces me that it is by God's wisdom that the gift of life comes in fragile earthen vessels. Many of the virtues we feel are the best that humanity has to offer, such as love, faith, hope, mercy, and courage, are associated directly or indirectly with our vulnerability.
I suggest that we, as a nation, need to use these alternative lenses through which to view human vulnerability and disabilities as we re-compute our outmoded "scientific" formulae for assessing other people's quality of life. We need you, members of the United States Senate, to call for a nation-wide calming of the frenzied research efforts based upon destroying future citizens, rather than endorsing this national anxiety. The potential quality of any human life can not be judged by outside authority.
THE POSITIVE ASPECTS OF HUMAN VULNERABILITY:
I propose that the catalytic effect of our mutual need for each other is a social positive which must not be lost for it fosters a sense of the need for mutual aid and interaction within our communities.
We no longer need to respond in the same way our ancient ancestors did to the dangers rampant in their primitive world. Fearful avoidance, the patterns of behavior called forth by fear that the weak and vulnerable would fall prey to the wooly mammoth, is no longer appropriate. Superior brawn, eyesight, hearing and speed are not the only human characteristics essential today. Many of us sit at our computers which meet the needs of those of our brothers and sisters with the palsied movements of Parkinson disease; the paralyzed arms of the quadriplegic, or which speak to the blind or accommodate the confused efforts of the poor speller. Today these "imperfect" characteristics no longer need throw us into a panic or deep depression. Our quality of life can remain quite satisfactory in spite of those impairments which would have severely limited the lives of our grandparents.
In my travels, I have observed that the intertwining threads of the interaction between people are enhanced when we acknowledge our need for assistance or help. Apparently, at this point in our history, we seek "excuses" to be interactive and to discard our sense of complete autonomy. This serves to refresh our sense of being an essential part of a vital community. This interaction is a potent antidote to the rampant alienation which threatens so many of our neighborhoods today.
ON A PERSONAL LEVEL:
I carry the genes for the blindness which knocked me from my ivory tower. 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 was unprepared for the loss of my sight at the height of my rapid climb up the academic ladder.
The two women closest to me both died with Alzheimer's disease. I may be programmed for a similar experience. Awareness of that possibility makes each day of intellectual exploration more precious and pushes me to greater achievement.
The women who built the base upon which I exist would never have wished for a single life of an unborn baby to be sacrificed so that their physical or cognitive challenges might have been eliminated or postponed. They were strong feminists in the model of Susan B. Anthony. They saw abortion as anti-woman and recognized that overcoming challenges as a characteristic to be admired, not avoided.
When I visited with my aunt, Naomi Harward, during the period when her Alzheimer's disease was being diagnosed, one morning I found her in tears. She had been widely recognized as a political force, having headed up a campaign to recall Governor Meecham. She was the oldest woman to appear on the cover of MS Magazine.
She said, "I don't want to have Alzheimer's." She had watched her sister, my mother, another widely recognized and strong feminist, live with that condition for long years. We embraced as I reminded her that none of us know what the future holds. I told her that at each step in her life she had showed me the way to live gracefully and successfully, no matter the challenges faced. That was a powerful moment in my life. She died quietly and peacefully during the few moments when her beloved grandson and his wife stepped out of her room. We felt she had chosen that moment to slip away and join those parts of herself which had already gone before.
She was so strongly opposed to abortion; the idea of harvesting stem cells from defenseless unborn children would have aroused loud and political protest, I am sure.
When my daughter was born, she had less than 1% chance of survival based upon her prematurity. I'd been told that babies at her stage of development were merely blobs of cells, not unique and individually crafted tiny people. I shall never forget the power and beauty of her tiny body; the fragility of life and her stubborn hold on it. I could see the intensity of her desire to live as each breath was aided; each beat of her heart monitored. That image continues to inspire me and that tiny essence of human life comes to mind every time I hear reference to the harvesting of stem cells from unborn children as an essential medical practice.
My daughter graduated cum laude from Harvard twenty years later and continues to be a joy and support. Thank God no one was lurking in those sterile halls, awaiting the emergence of a frail and fresh "product" to be marketed for research or "therapeutic" purposes.
I have neurological impairments and have sustained spinal injuries, and while I enjoy dancing in my wheelchair, it might be pleasant to do so in what is considered a normal way. But be very clear in this: I am deeply opposed to any gain in my sight, mobility, or even my hearing if it was purchased at the cost of a single human life.
As I've already noted, I may face Alzheimer's disease at some point in my future. But 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.
I've talked with and cried with hundreds of my colleagues within the disability movement. We seek better funding for rehabilitation, not a quick fix. I challenge you, members of the United States Senate and all my fellow citizens, to create environments, fund current rehabilitation programs and alter perceptions of human vulnerability which frighten those who fear what their future might hold. We can escape from the ancient demons which haunt nightmares.
The worse thing in life is not disability, or pain, or even death. The worse thing I can imagine is to create a society which sees itself as justified in treating other 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. Even a "small thing" like the fate of an unborn child can have great implications as we create that future for ourselves and our children. |
