Disability in the Age of Enhancement
On November 24 2009, the Church Report highlighted the efforts of Alliance Defense Fund attorneys who filed an emergency motion to save the life of nine-month old Gabriel Palmer, who has disabilities. East Tennessee Children’s Hospital says it may abandon his medical care even though he is stable. “A disability should not be a death sentence. No one should be allowed to decide that an innocent life is not worth saving,” said Matt Bowman, ADF Legal Counsel.
Ben Mattlin, freelance writer who has physical disabilities, understands all too well this potential threat against those who are devalued in society. Last year, he was rushed to the hospital after becoming septic. He was unconscious and close to death. But before the doctors administered life-saving treatment, they turned to Ben’s wife and asked, “Are you sure you want us to do this?” It was clear to Ben’s wife that the only reason they hesitated was because of her husband’s disability.
People with disabilities continue to represent that 800-pound gorilla in the room that no one wants to talk about. They are to us who are temporarily able-bodied a “disturbing” presence. They destabilize our certainties regarding our place and our identity. A person with an intellectual disability or one who “looks different” than the rest of us, can arouse within us perceptions of estrangement. Often, modes of communication that we take for granted are useless with those who have an intellectual disability. This can cause us to doubt ourselves; it is a disturbance that destabilizes us to the core of our being.
On a personal level, an encounter with a person with a disability forces us to confront modes of existence, which are close to ours, but at the same time we fearfully reject. “I do not want to be like that, I do not want to become like that,” we say to ourselves. This tends to be our most common responses to those who have a disability. Furthermore, these encounters can disturb what we think and experience about what it means to be human. It may even disturb our self-image. What is usually considered relevant and valuable does not seem as important at all in this encounter with a person with a disability—who belongs and yet does not belong in our categories of what it means to be human.
So, how do we handle this disturbance of our self-image that is brought about by this “strange other,” this person with a disability? We often, unfortunately, make a distinction between ‘we’ and ‘they.’ ‘We’ are a people ‘from here;’ ‘they’ are ‘from elsewhere.’ Herman Meininger points out that from this perspective, the stranger simply is the ‘strange other,’ the one who does not come from us, who is not one of us, who does not belong to us. This does not, by the way, say anything about what the stranger thinks of him or her self. For the most part, we rarely think about exploring the stranger’s own perspective because we are so preoccupied with our experience of the presence of a stranger, a presence that destabilizes our own identities.
None of these attitudes or insecurities is lost on physicians and medical scientists, for they too are influenced by a culture of ‘stranger’ fear. What is more, the enormous advances in medical technologies further add to the possibility that they will experience existential disequilibrium. In the medical arena, for instance, an encounter with a person with a disability can and often does create just as much dissonance. As Ben Mattlin aptly points out, disability in general can represent a gap in their knowledge, “an irritating puzzle, a fearful reminder of the limits of their calling.” Hence, disability can create for some physicians an emotional and intellectual disturbance, a crisis of confidence. In an age when they can indeed make people ‘better than well’ and the quest for perfection is ever pervasive, the existence of a person with a disability can represent a complete failure. “I could not fix you; hence, I feel bad about myself. Therefore, you should not be here.”
Psychologist and special educator, Wolf Wolfensberger, labels this view of persons with disabilities as one that can lead to “death-making.” By “death-making,” Wolfensberger means any action which either directly or indirectly brings about, or hastens, the death of a person or a group. Death making includes actions ranging all the way from explicit, overt, and direct killing of another person, to very concealed and indirect killing that may take a long time to accomplish and is difficult to trace. Wolfensberger pinpoints the use of preimplantation genetic diagnosis (PGD) in order to detect and destroy “defective” embryos before they are implanted as an example of indirect killing that may be difficult to trace.
Tom Shakespeare presents a dialogue between two hypothetical characters in order to highlight some of the arguments related to the new genetic technologies that undergird prenatal testing. His work reveals some troublesome attitudes toward people with disabilities in the age of enhancement:
There are at least four valid reasons why a woman might choose to avoid the birth of a disabled child:
1) She does not think disabled people should exist.
2) Society should not be burdened with the disabled.
3) Disability involves suffering, and we should not knowingly bring people into the world to suffer.
4) Parents and siblings of disabled children are burdened with their daily care routine and thus suffer unduly. If we can avoid this situation, we are duty-bound to do so.
The fact of the matter is that people with certain kinds of disabilities suffer horribly and then die a miserable death. Are we not morally obligated to do all we can to prevent this kind of unjust suffering, even if it means in some cases to not allow the sufferer to be born?
The example above certainly qualifies at best for a kind of eugenics or at worst for what Wolfensberger refers to as ‘death-making.’ Be this as it may, regardless of our existential response, we as a society must learn to acknowledge the “disturbing” presence of those who have a disability. “Please! Don’t hold my rag-doll body against me!” says Ben. The fact that Ben must plead in this way says more about the “able-bodied” than it does about the disabled. It witnesses to our deepest fears and ignorance. But we can’t escape it. Disability is no respecter of persons. If we live long enough we will inevitably experience some kind of disability. But if this is so, why does there seem to be no room for the disabled in the age of enhancement?
According to the Institute of Medicine’s 2007 The Future of Disability in America Report, approximately 54 million Americans report a disability. If one considers people who now have a disability, people who are likely to develop disabilities in the future, and people who will be affected by the disabilities of family members, then disability will affect the lives of most Americans. The future of disability in America will depend on how this country prepares for the wide array of complex issues related to disability, including demographic, fiscal, medical, and technological developments. The experts who wrote the Institute of Medicine’s Report rightly claim that policy reforms are needed and better happen soon if we do not want to see our health care system collapse. Those who want to move ‘beyond therapy’ had better take this to heart.
Robert Helms, a scholar at the American Enterprise Institute for Public Policy Research, certainly echoes this argument in a Health Policy Outlook piece entitled, “Medicaid: The Forgotten Issue in Health Reform.” Helms points out that the new health care law would do well to address the many flaws in the Medicaid program. Helms argues further that Medicaid provides health care for the poorest and most severely disabled in the US and should be a top priority. But, as Helms so aptly frames it, Medicaid was the forgotten stepchild in the health care reform debate.
There is little question that the American health care system is both complex and complicated. Attempts to reform have been just as complex and complicated. If it were simple and straightforward, lawmakers and the American public would have come to a consensus about the issue at the first signs of problems. But it took one hundred years to finally put into place a new health care law. I think an appropriate question to ask in this context is the following: Is there room for enhancement in the age of fragility and disability? Those who crafted the new health care legislation do not seem to think so. They left little room in the bill for funding for the pursuit of perfection through enhancement technologies.
Whatever flaws the new health care law has, it does address quite clearly some of the needs of the disabled. For example, if persons have a pre-existing condition and have been uninsured for more than six months, they can get subsidized coverage through a new high-risk insurance pool until 2014, when insurers can no longer refuse people with pre-existing conditions. Also, if a person is currently insured through Medicaid, states have to maintain current income eligibility for the program until 2014 for most adults and 2019 for children, but beneficiaries may lose some optional benefits, like dental and vision care. Because of the economic downturn, many states had made or were considering substantial cuts in the public program for the poor and the disabled. States also cannot reduce eligibility until 2019 for the Children’s Health Insurance Program, which covers children in families that earn too much to qualify for Medicaid, but too little to afford private health insurance. States will receive incentive to offer home and community based services to chronically ill and disabled individuals through Medicaid.
The Class Act (Community Living Assistance Services and Supports), a legacy of Senator Kennedy, sets up the first national government run long term care insurance program, which will be offered through employers. Long term care means help with daily living activities such as bathing, dressing, and getting in and out of bed. This will help those young and old who become disabled. More than 10 million Americans need long term care, nearly 60 percent of them are 65 or older, according to a report published by Georgetown University in 2007. But few can afford such an expenses. The Class Act does not require screening of applicants for health problems, so people who might not qualify for private long term care insurance can enroll.
For the most part, the new health care law seems to be in line with reality. Disability is definitely a reality. People with disabilities cannot simply be “enhanced” out of existence. Therefore, health care legislation rightly guarantees better access and quality services for the poorest and most severely disabled members of society. As it was mentioned at the beginning of this piece, disability should not be a death sentence for anyone.
Nevertheless, there are other, less tangible reforms that must also take place—reforms that Congress could never adequately address. We as a society must reform our views concerning what it means to be human to include those with a wide range of disabilities. Unfortunately, a reform of this kind seems to be a long way off. Instead, as the news stories at the beginning of this paper seem to indicate, we are apparently producing physicians who believe that the disabled may not have lives worth living. Christian theology does offer a path to a reform of this kind—a reform of heart and attitude. The Bible is replete with stories of ways to do justice to the ‘familiar’ (the normal) as well as the ‘otherness’ we perceive in persons with a disability. Leviticus 19:34 says, “The stranger who sojourns with you shall be to you as the native among you, and you shall love him as yourself; for you were strangers in the land of Egypt…” In this passage both the familiar and the strange find their place together. Meninger points out that the stranger is and remains a stranger, but that does not exclude him or her from all privileges, rights and duties of any native Israelite. This demonstrates that the God of Israel is also the God of the ‘strange other.’
This biblical mandate to love your neighbor as yourself points to the importance of hospitality—a precept little understood in the individualistic West. The ancient Middle Eastern understanding of hospitality is connected with the remembrance of being a stranger, an exile, and an outcast in another land. The Leviticus passage is all about relationships between people ‘from here’ and people ‘from elsewhere.’ In the Parable of the Good Samaritan, the people ‘from here’ go out of their way to avoid the injured sojourner; but the man ‘from elsewhere,’ the Samaritan, shows himself to be his neighbor (Lk. 10:25-37). The Samaritan offers the ‘disabled stranger’ access into his world, so to speak, by taking him in and caring for him. But it is clear from the rest of the story and from other teachings in the New Testament that hospitality is much more than mere accessibility.
Hospitality must be understood as a departure from our own home, as a desertion from the familiar, as an appropriation of the experience of being a stranger. The destabilization of our own identities is not just a consequence of the arrival of a stranger. It is also a precondition of true hospitality. The other has to be welcomed and valued not despite his or her otherness, but because of it. True hospitality then consists in the communal art of living together. In the Old Testament, Genesis 19 and Judges 19 are classic stories on hospitality. It is significant that in both cases the host himself is a stranger. It is also significant that in both texts by their perverse behavior the people ‘from here’ put the principle of hospitality to the test. This violation of hospitality in itself evokes new forms of inhumanity.
In the same way, there are some people ‘from here’ who would like to use the so-called age of enhancement as an occasion to call into question the humanity and quality of life of those ‘from elsewhere.’ We must become a different kind of society, one that embraces biblical hospitality because it is right and it is good, for the familiar and strange alike. As it stands now, there are some who are making the land inhospitable for ‘strangers from elsewhere’—talk about a disturbing presence….
Alliance Defense Fund Files Suit to Prevent Tenn. Hospital from Withdrawing Care from Infant. http://www.thechurchreport.com/index.cfm 11/24/09.
Helms, R. (2009). Medicaid: The Forgotten Issue in Health Reform. Health Policy Outlook, No.14, November 2009.
Mattlin, B. (2009). People Like Me: Is There Room in Health Care for the Disabled? http://www.chicagotribune.com/news/opinion/shi-perspec1129healthnov29,0,5516919.
Meininger, H. (2008). Disturbing Presence. Personal Paper. I am indebted to Herman for his deep insights on the ‘strange other.’ This paper reflects much of his thoughts.
Institute of Medicine (2007). Future of Disability in America. Washington D.C.: The National Academies Press.