Braille Monitor                                                August/September 2013

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Reinterpreting and Expanding “The Right to Live in the World”

by Adrienne Asch

Adrienne AschFrom the Editor: Dr. Adrienne Asch is the director of the Center for Ethics at Yeshiva University and the Edward and Robin Milstein Professor of Bioethics. These are her titles and the positions she holds, but much more demands to be said about her. She has been a member of the National Federation of the Blind since the early 70s, and she has lived our message and spread it to audiences who can be reached only by someone with her accomplishments and credentials. We strive for integration and seek to take our message to places where it is seldom heard and to places where it can be discussed with those who don’t agree with it. Adrienne has tirelessly done this, and the result is that Federation ideas and beliefs are topics for discussion throughout the world.

But her role goes far beyond being a spokesman for our cause because her journey into ethical discussions also gives her a message to bring to us. This is what she did in her convention presentation on the afternoon of July 4, 2013. Here is what she said:

It is a tremendous honor, privilege, and responsibility to be here with you today, following a stirring description of all that the NFB has worked for over this past year. I know that every year I have been distressed by the problems our members face and moved by the struggles NFB takes on every day to change what it means to be blind that I wind up making my way to the back of the room to the PAC and SUN tables to increase my pledges. This year will be no exception, and I'll understand if some of you are doing that now and not necessarily paying undivided attention to what I'm going to be talking about today.

When our founding president wrote his justly famous article "The Right to Live in the World," he was talking about the right to move about in the world, the right to be employed in that world, the right to have an ordinary place in the common life of the community and nation.

But what I'm talking about today is yet one more arena in which individuals within our organization and our organization as a whole may become more involved. As medical science learns about how to extend life after injury and illness or learns how to detect someone's future amount of illness or disability, we will confront ever more moments when assumptions about what blindness means for a person's future, for her or his "quality of life" will be used to decide whether that person should continue to "live in the world."

In the past forty years a host of questions have emerged for individuals, families, medical professionals, and the larger society. Here are some examples: parents of premature infants must decide whether or not their infants should enroll in a study to determine the appropriate level of oxygen the infant should receive to try preventing blindness caused by retinopathy of prematurity. How should the researchers describe the consequences of blindness or vision loss to these parents? Or, imagine that you, sometime later in your life, having been blind for many years, acquire some other set of disabling conditions as the result of a car accident or a stroke. Should you continue to receive life-sustaining treatment, or should blindness, when combined with the new disabilities, justify having family or doctors provide less treatment or different treatment than would be provided to a person with sight who sustained the same new illness or injury?

Suppose a person who has been deaf his whole life learns that he will become blind within the next few years. He decides to go to Oregon, Washington, or Montana—where it is legal for physicians to aid a person in dying—with the request that physicians give him medications that will end his life so that he doesn't have to live for years as a person who is both deaf and blind.

To take just two more situations that people already face: prospective parents, eagerly anticipating the birth of their first child, learn through genetic testing that the child-to-be is very likely to have an inherited condition called retinitis pigmentosa. Should the parents continue the pregnancy, knowing their future child will probably be blind, or should they decide to end the pregnancy? What information will help them make a good decision?

As I said, these are questions that have come up over the past several decades. President Maurer discussed some of them during his 2003 banquet speech. Just this past April Gary Wunder wrote an editorial in the Braille Monitor suggesting that this might become a new arena for NFB discussion and action.

It was during the early 1980s that I first discovered these bioethical questions. I had been investigating discrimination cases for the New York State Division for Human Rights for ten years. I had been a member of the NFB for fourteen years when I went to my first bioethics meeting at the Bar Association of the City of New York. The topic being discussed was whether parents and doctors should be allowed to withhold life-saving treatment from a baby born with spina bifida or Down syndrome. The treatment would lessen, but not cure, the disabilities; without the treatment the baby would probably die. There were four experts speaking: two urging that the baby receive treatment over parental objection; two supporting the right of parents to make what was a life-and-death decision for their newborn child. During the question-and-answer session, I stood up and said something very close to these words: "These talks have been very thoughtful and careful. But none of the speakers here is either a person with a disability or a person who is the family member of someone with a disability. The perspective of people with firsthand knowledge of disability is absent from this conversation. It shouldn't be." I didn't have firsthand knowledge of Down syndrome or spina bifida, but I did have firsthand knowledge of one disability, blindness; and I did have years of political, professional, and NFB experience that insisted that the voices of those affected by decisions had to be present when such decisions are made.

Now I have to say that these few sentences, sentences that sound pretty obvious and commonsensical to us, made a frighteningly big impression on many of the people in the room. The next thing I knew, someone came over to me and said: “How do I get in touch with you? I need to invite you to a conference." One of the speakers urged me to contact the Hastings Center, the premiere bioethics think-tank in the country at that time, to join their project on decision-making for "imperiled" newborns. I did join the project and go to the conference. Soon I was going to more and more bioethics conferences. At those conferences I was listening to people who considered themselves "experts" say things like: "If you're paralyzed and can't run through the woods, it's worse for you and others than if you can run through the woods." "It is a tragedy to have a disease like muscular dystrophy.”

My question: "Have you ever met or spoken to anyone who has muscular dystrophy?"

"No, but I know that it has to be terrible."

"You consider yourself a scholar," I said. "You believe in making arguments with evidence. Where are you getting your evidence about muscular dystrophy?"

A few years later Dan Brock, a philosopher who writes about bioethical issues and whose ideas Dr. Maurer discussed in his 2003 banquet address, wrote the following:

The controversy concerns genetic diseases that result in serious disabilities but that still leave the persons who have them with valuable lives well worth living (Brock, 2005, 70-71).... My concern is with the middle category of genetic diseases and disabilities that most people would consider serious, but neither devastating nor minor. As examples of serious disabilities, I shall use blindness and serious mental impairment or retardation, though recognizing that some would judge blindness to be sufficiently minor to not warrant reproductive testing (71).... For example, if a person has been blind from birth, she may never fully understand the experiences she is missing from not being sighted. Nevertheless, there will be valuable human activities requiring sight that will not be possible for her, or that will be more difficult and less successful without sight, such as visual experiences and the pleasures or work or recreational activities requiring sight, and the potential loss or limitation of those activities in her life may be reason enough to attempt to prevent her disability when that is possible (72).

Now here's an interesting thing about the field of bioethics. The first philosophers, lawyers, doctors, and clergy who got involved in bioethics wanted to foster the rights of patients going through the medical system and dealing with the often patronizing attitudes of doctors. Very similar to our views in the NFB, bioethicists espouse views like "patient choice" and "self-determination" and "autonomy." They argue that no medical procedures should be done without receiving "informed consent" from a patient. So here's a little story about the collision of NFB philosophy and bioethics when it comes to informed consent. In 1993 I was attending a bioethics conference known as Bioethics Summercamp. At this four-day conference 120 bioethicists got together for discussions of emerging issues; leisurely meals; drinks by the pool; conversation; hiking; and, in this instance, whitewater rafting. About eighty of us signed up to go whitewater rafting. Now I want you to picture this scene: eighty men and women between the ages of mid-thirties to seventies. Philosophy professors aren't known for their athletic prowess. Most of us had never done whitewater rafting; most of us were both curious and a little nervous about what awaited us. How rough were the rapids? What were the chances of falling out of the raft? Would the raft topple everyone? Riding over to the rafting, we all read and signed the informed consent, assuring the rafting company that we knew rafting had its dangers, that we knew we might sustain injury in an accident, that we knew water was wet, and rafts might capsize. I read and signed the same informed consent as all my bioethics colleagues, and all of us carefully read over and criticized every word in and all the words out of the informed consent document. We discussed how we, as experts, would rewrite it. And then we got to the rafts and the professionals from the company who were going in every raft with the six aging professors. A doctor--a psychiatrist--took it upon himself to speak to the person leading our raft to call attention to the fact that I was blind, a fact that should have been obvious from the presence of my cane. "You can't paddle the raft," he said to me. “You have to sit in the middle.” I ignored these admonitions as much as I could, doing some paddling, but all I got for it was the displeasure of my colleagues, who accused me of going in the raft to prove a point, not because I was interested in having a new experience.

The next year we had another whitewater rafting session, and a colleague rushed over to me upon seeing me arrive to say: "Adrienne, you can't go in the raft! Alta fell in yesterday."

My reply: "Are you telling everyone else not to go in the raft?"

So much for autonomy, self-determination, informed consent, and the acceptability of taking risks! In all too much of the bioethics establishment, they know better than we do about how bad our lives are and how much we don't understand the ordinary hazards of life—whether it's cooking on a stove, crossing the street, or riding in a raft.

So we have a lot of work to do, and here's some of what I think NFB members, who are experts in what it means to live as a blind person, can do to educate the world of bioethics about blindness. There are medical schools throughout the country, one in nearly every state. NFB members could reach out to medical schools to offer to speak with medical students, residents, and doctors—not just in ophthalmology but in any field—about what it means and doesn't mean to be blind. Every hospital has some kind of ethics committee, where difficult cases get discussed. These ethics committees need community members, people who are not medical professionals but people who bring dedication and commitment to getting the views of the public into ethical deliberations. People who are blind or who have other disabilities have often been excluded from these deliberations; they have not been considered part of "the public." But of course, we are, and our voice needs to be heard. Similarly, a great array of genetic conditions can now be detected in embryos and fetuses. When people who are thinking of becoming parents learn that a potential child might have a genetic condition that would result in blindness, these people deserve to get information, not only about the medical facts of retinitis pigmentosa, Leber's congenital amaurosis, retinoblastoma, or some other condition. They need to know how children, adults, and their families live their lives on a daily basis. What are the resources available to children and their families? Can parents expect that their potentially blind child will have a life that will include school, friends, love, work, and life as a parent? For just the same reasons that the Federation works hard with the NOPBC, the Federation and NOPBC need to work so that genetic counselors and doctors can give prospective parents of blind children the opportunity to learn from experts in blindness what might be in store for them and their children.

Let me conclude by challenging us with some questions that are just starting to get bioethical discussion. These are questions that could provide us with plenty of opportunity for reflection and conversation.

Resource allocation in an emergency is a big topic in bioethics these days. Different states, professional societies, and the federal government are trying to decide who will get ventilators in a serious flu pandemic when there are not enough ventilators for everyone. Various allocation schemes have been discussed: only people above or below a certain age will get them, knowing that the very young and the very old might die without them; only people with dependents will get them, so that children will not lose parents, aging parents will not lose children who are caring for them, people will not lose their spouses; only people with a certain estimated quality of life before and after the ventilator use will get them; and people whose quality of life is considered lower for some reason will not get them. Again, that might be blind people, because blindness is considered a deterrent to a life of quality. Conversely, blind people, as those "worse off" should get ventilators first because they deserve compensation. Do we want to get priority for ventilators by claiming we've been "worse off" all the rest of our lives? Is that a price we want to pay for the privilege of staying alive?

As people who believe it is respectable to be blind, legitimate to be blind, we may believe that blindness should not disqualify people from the right to live in the world. But suppose genes could be modified before birth or visual implants could be given after birth or during a life to preserve or restore sight? Is blindness a characteristic that is incidental or central to anyone's self-definition? How should we help parents contemplating sight-restoration techniques for their children or people contemplating sight-restoration for themselves?

I don't know how we as individuals or we as an organization will choose to answer these questions. I do know that, just as we've worked to change laws and practices in education, rehabilitation, technology, employment, and child custody, we must take our place in the bioethics debates now and in the future. Although some of these questions may challenge us deeply to think about what it means to be blind, we are up to that task. Reread Dr. tenBroek's historic article with these questions in mind. Go back to Dr. Maurer's 2003 banquet speech; reread Gary Wunder's editorial in the April, 2013 Braille Monitor. They can guide us as we go into this new intellectual and practical territory. And, as someone who's been doing this work for about thirty years, often feeling as though I'm alone on the barricades, I'd like your company. Thank you.
           
Reference
           
Brock, D. W. (2003). "Preventing Genetically Transmitted Disability While Respecting Persons with Disability." in Quality  of  Life  and  Human  Difference, edited by David Wasserman, Jerome Bickenbach, and Robert Wachbroit. (New York: Cambridge University Press), 67-100.

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