I first met novelist and activist Anne Finger when she joined my mothers group, made up of socialist working women. She had recently moved here to Detroit, and was very vocal about abortion, feminism, and organized religion. I was both intrigued and intimidated by her.
Since those early encounters, I have run into her at soccer games — her son plays in the same league as my daughter — had tea with her in her brick carriage house, and invited her to help me with an issue of The Witness, a magazine I edit. The issue was on disability rights.
Finger became disabled when she contracted polio just before the age of three, and just before the discovery of a vaccine. “I’m one of the last of my tribe,” she observes. Mainstreamed in school, she did not readily identify herself as disabled, but rather equated disability with dependency and whininess, as she had been taught. Only when she became a feminist and examined the roots of oppression did she become active in the disabled community.
“Suddenly I had this enormous cultural, emotional rapport with disabled people,” Finger recalls. “It was very eye-opening for me to realize how much I had been formed by my disability. Frightening, too.”
There is an economy to her speech and movements; she wastes little time on the inessential, or on decorum, if it conflicts with truth. Her writing can be painfully vivid, such as when she describes learning to throw her unresponsive right leg forward when she walks. In her novel Bone Truth (Coffee House Press), Finger writes dispassionately about parents whose emotional lives overshadow those of their children. Perhaps her most wrenching book is Past Due: A Story of Disability, Pregnancy, and Birth (Seal Press), in which she describes her anxiety that the child growing within her might be disabled.
Long a proponent of sexual freedom and procreative rights, Finger identifies herself as an abortion advocate, and has even worked in an abortion clinic. Yet she parts company with pro-choice activists on certain aspects of the issue. A turning point for her came a decade ago, when she participated in a feminist roundtable during which it was generally agreed that if a fetus had a disability, abortion was an appropriate response. She now speaks out against the misuse of abortion by people who are “on a quest for the perfect baby.”
Recently, Finger has opposed the actions of Dr. Jack Kevorkian, the Michigan pathologist who helps people to commit suicide as part of a campaign to legalize doctor-assisted suicide. Finger, who says some of her students applaud Kevorkian’s work, finds the practice of assisted suicide extremely suspect.
When I call Finger’s office at the Wayne State University English department, I am likely to be told that she is out speaking at a conference on disability, feminism, creative writing, or politics. Not long ago, she won an award that allowed her to spend a summer writing in Italy. Currently, she’s a visiting professor at the University of Texas at Austin.
This interview was conducted in Finger’s home, where she displays her collection of evocative religious art. I asked her about it.
Finger: I feel free to put those up because I’m an atheist, so it’s all ironic. I’ve always been disdainful of spirituality, but in the last couple of months I’ve started going to the local Zen center. I’m still clinging to my atheism, but, as a disabled person, I really like Zen’s emphasis on slowness. And I like the meditation. I like the chanting. What I like about religion is the communal aspect of it. The only time I’ll go to church is if there’s a piano. I like it when people sing together.
Wylie-Kellermann: But you’ve had some problems with Christians and healing.
Finger: Yes, if you’re disabled, people will stop you on the street and suggest a healer or tell you that they’re going to pray for you, or that you would be cured if you believed. Once, when I was sitting in a village square in Greece, a priest came up to me and put his hands on my head and touched my legs and prayed over me. I don’t speak Greek — I couldn’t say, “Leave me alone” — so I just sat there. There was nothing I could do about it. I also felt that this person meant well, and I was aware that I was a foreigner in his culture.
In London last summer, I met a group of disabled people who had organized against faith-healing frenzies. One woman told me she had encountered Christian demonstrators who were rocking back and forth and pointing their fingers at her. At first she couldn’t figure out what was going on. Then she realized they were “casting the devil out of her.”
Wylie-Kellermann: That’s really appalling, that strangers would accost disabled people on the street.
Finger: I get accosted a lot. There’s a sense that, if you’re disabled, people have a right to intrude. People will stop me and ask me what my disability is and give me advice. People are generally, if anything, too friendly; I think it’s an expression of their discomfort. They’ll say, “Hi! How are you?” with this scared look in their eyes. They use superficial pleasantry to mask their fear and discomfort, so I’m getting a constant double message from them. It can make you nuts real fast.
Wylie-Kellermann: You’ve said that, because you were mainstreamed, you didn’t identify with the disabled community.
Finger: Yes. For a number of reasons, people with polio were much more integrated into the mainstream than people with other disabilities. In large part, it was because President Roosevelt provided a public image of polio as not being totally debilitating. Another factor was that polio is a middle-class disease, a disease of good sanitation. When sanitation is poor, people get immunity to the polio virus through low-level exposure to it. Once there is good sanitation, they don’t develop that immunity. In Third World countries, polio epidemics often break out when sewers are built.
In many ways, the integration granted to people with polio was advantageous to me, but in other ways it wasn’t. For example, I didn’t grow up knowing other disabled people. In fact, I absorbed a lot of the culture’s disdain for disabled people. I always thought, I am different from them; they are whiny and dependent, and I’m not like that. Many disabled people, especially of my generation, have been raised not to identify themselves as disabled.
Wylie-Kellermann: Isn’t the same true of previous generations?
Finger: Only to a point. There was a big shift in the treatment of disabled people coinciding with the Industrial Revolution. Prior to that time, disabled people were much more integrated into the rural, agrarian economies, where everybody’s labor was needed. Also, in agrarian economies, there wasn’t the same regulation of work pace as in an industrialized society. When you’re working in the field, somebody can work three times slower than everybody else without disrupting production. The Industrial Revolution changed all of this. With the rise of industrialization came enormous growth in the number of disabled people put in institutions.
We’re being told that medicine is supposed to get rid of disabled people — either by curing us or killing us. This idea is deeply rooted in industrial culture. I think there will be tremendous social pressure to “choose” suicide in the future.
Wylie-Kellermann: When did you first encounter the disability-rights movement?
Finger: When I was thirty, I went to a conference for people with polio. It was as if I were a Jew who’d never known another Jewish person, and suddenly met a roomful of them.
Judy Heuman, who is very involved in the disability-rights movement, was at that conference. She’s in an electric wheelchair, and, at one point, there were these plastic chairs in her way, so she just plowed through them. It was a liberating moment for me: if something’s in the way, you just push it aside, even if you have to do so in a socially inappropriate way. It was simultaneously wonderful and shocking to me. I thought, Oh, my God. We can do that?
Wylie-Kellermann: You’re also an abortion-rights activist, and you’ve worked in an abortion clinic, but in your book Past Due you describe being with feminists who were talking about selective abortion, and suddenly feeling as if you were invisible.
Finger: There’s overwhelming social support for abortion in cases where there’s a “defective” fetus. That support has especially been asserted by the more liberal wing of the abortion-rights movement. But I have a problem with that: it stigmatizes disabled people. The abortion-rights movement exploits the issue of disability by talking about disabled fetuses in ways that dehumanize disabled people. I support abortion rights because I’m a feminist, and, as a feminist, I want women to have access to abortion because we need to control our destinies. Women who have abortions because of rape or incest or fetal “defect” are only a small portion of the women who have abortions. We’re not really arguing honestly and broadly for abortion rights when we argue for these exceptional cases. I think we need to be willing to put forward a more radical politics. Abortion isn’t going to get rid of the problem of disability.
Wylie-Kellermann: It has a major effect on one’s understanding of disability if a whole generation expects that, thanks to prenatal exams, disabled babies won’t be born.
Finger: I’ve talked to women who’ve had amniocentesis, and afterward they all say, “Now I know my baby’s OK.” But they don’t know. They may know their child doesn’t have X, Y, or Z birth “defect,” but they don’t know that they’re going to have a nondisabled child.
Wylie-Kellermann: Within what parameters do you support abortion?
Finger: I believe women have a fundamental right to bodily autonomy. There is, in a sense, a line of flesh; we should be able to control what’s inside our bodies — what we eat or drink, whether we give our blood, whom we let into our body. But I’d never call myself “pro-choice.” And I’m not comfortable saying, “Women absolutely have a right to abortion at any time, under any circumstances,” because I think our society’s hostility toward disabled people pushes some women to have abortions. In a society more welcoming of disabled people, women would actually have much more freedom of choice because they would be more comfortable deciding to have a disabled baby.
Wylie-Kellermann: When you worked in the abortion clinic, did you always feel unequivocal about the decisions women were making?
Finger: I never felt I could form an ethical judgment one way or another about somebody else’s decision. The times that abortion seemed an absolute necessity were pretty rare. Most women have abortions for very complex and difficult reasons. I talked to women for a relatively brief period of time, and they’d almost always have made up their mind. They didn’t tend to tell me the basis for their decision.
Wylie-Kellermann: But you think the decision should be made by more people than simply the woman and her doctor?
Finger: No, I don’t think that. I think it’s good for the woman to talk to a lot of people and think about the complexities. But I think the final decision has to be hers.
Wylie-Kellermann: Should women be required to have those conversations?
Finger: No, the idea of a legal requirement to think about an issue is ridiculous and patronizing — and ultimately it’s harassment of the woman. It’s not really giving people information they want or need. I would like it if we lived in a society where people felt able to tell their friends and neighbors, “I had an abortion and this is why I did it,” or, “I didn’t have an abortion and this is why.” Of course, this is a very utopian vision.
On the most basic level, there needs to be better counseling. When people get genetic counseling, there are assumptions made about disability and intervention in the pregnancy. One assumption is that, after you’re thirty-five, you’re going to have amniocentesis, and that everyone will have an ultrasound. If you decide to step out of that routine, you really have to justify it.
For instance, a lot of the literature women get at doctors’ offices says, “Why have this test? So that you can be assured of having a healthy baby.” What it really means is: if the fetus is “defective,” you can abort it and try again.
Women need to know what sort of step they are taking when they have those tests and procedures done. People have tremendous faith in medicine. People often go into the process thinking, If the doctors find something wrong, they can fix it, rather than, If the doctors find something wrong, I’ll have an abortion.
Wylie-Kellermann: What about people who feel entitled to plan a family that doesn’t include a child with disabilities?
Finger: There’s a very strong cultural assumption, now that people generally have only one or two kids, that our children need to be perfect. This is more true among the upper classes, who have more access to technology, and who are having fewer children, and having them later in life.
At a genetics conference last weekend, I talked with a psychologist who works with people who’ve had abortions after prenatal diagnosis. She told me people’s first reaction when they have a disabled fetus is “I have this disabled thing inside of me. I want to get rid of it. Get it out of me!” But if they have a week, many get beyond that reaction.
As a society, though, we just want to get rid of it. We don’t want to look at it. We don’t want to think about it. Every time I see a little cup next to a cash register that says, “Cure MS,” I think they want only to make it go away. Charities never suggest fund-raising for social change, only for cures. If you did random interviews on the street asking, “Should there be disability?” people would say, “Of course there shouldn’t be disability!”
Wylie-Kellermann: And you disagree?
Finger: I think it’s socially impossible for disability to disappear, because disability is a social construct. For example, people are now defined as being of subnormal intelligence if they have an IQ below 70. Let’s say genetic manipulation raised the population’s IQ to an average of 200. Unless we have absolute uniformity, we’re still going to have a sector of the population that’s subnormal. If there is a standard of what human beings can do, there are always going to be people who don’t meet those standards and are therefore defined as disabled. If we got rid of everything we now think of as disease, something else would become the imperfect.
Disability is part of the richness and variety of life. The idea of a life without suffering, without pain, is a ridiculous and impossible notion. All life has suffering in it. “How can we deal with that suffering?” is the question we need to ask as a society, rather than just trying to get rid of suffering, because it’s never going to be gone.
Wylie-Kellermann: What would you say to parents who are already working ten-hour days trying to send their four-year-old to Harvard, and who want to make sure their next pregnancy doesn’t rock the boat in any way?
Finger: I would suggest they reexamine their assumptions about what makes life good and rich. Suppose that four-year-old who’s headed to Harvard gets hit by a drunk driver and becomes a quadriplegic? What is their response to that child going to be? I wouldn’t try to talk somebody out of a decision they’ve made, or be critical of them on a personal level, but I hope that people would think about the issue more broadly. There are some real difficulties in having a disabled child — I wouldn’t tell anyone otherwise. But I think there’s also a lot of richness and strength and joy that people don’t realize.
Marcia Saxton, the woman who organized the genetics conference I spoke of, has spina bifida. She told about going to see a doctor who said, “Gee, if I’d known how well spina bifidas could turn out, I wouldn’t have recommended abortion in so many cases!” People assume that doctors understand disability. But medical professionals tend to know relatively little about how disabled people live their lives.
We have this notion that some dependencies are OK and others are not. It’s OK to need a car; it’s not OK to need a wheelchair. It’s OK to go to a hairstylist to get your hair done; it’s not OK to need an attendant to wash your face and hands.
Wylie-Kellermann: You’ve often pointed out that our society is profoundly uncomfortable with the notion of disabled people being sexual.
Finger: Yes, and this attitude is common even in people who are quite radical about sexuality. If you look at the book Powers of Desire, one of the first books about sexuality to come out of the feminist movement, there’s nothing in there about disability and sexuality. Another early text, Pleasure and Danger, does have one article, but it has a narrow focus. In the lengthy section that analyzes sexual oppression and repressive laws, disability is never mentioned, when, in fact, disabled people are frequently prevented from having sex if they live in institutions or quasi institutions. And for people with severe disabilities who are dependent on government aid, there are, in effect, penalties that make it virtually impossible for them to marry. The penalties are called “marital disincentives” — if you marry, you can lose a tremendous amount of Supplemental Security Income, Medicaid, and so on. Even if you marry someone who is also disabled, you still lose the money.
Wylie-Kellermann: Do you think this is a conscious effort?
Finger: I think the conscious effort is to cut costs. But there’s an unconscious effort to keep disabled people from being sexual by keeping them from marrying.
In addition, our culture emphasizes that to be sexy is to be physically fit. The whole way sexuality is constructed in our society excludes disabled people. And that has profound social and psychological impacts.
Wylie-Kellermann: I don’t want to say this lightly, but the culture actually has that effect on everyone. Marketing and the media put a high gloss on sex. It’s like you think you’re entitled to —
Finger: — unlimited orgasms every time you get in bed. That’s true. On the other hand, most disabled people are brought up thinking that they will never have sex.
It’s interesting that, on the one hand, disabled people are not seen as sexual, but, on the other hand, the rate of sexual abuse in the disabled community is very high. Rape and sexual abuse are power issues, and disabled people are easier to abuse sexually because they have less power. So more and more disabled girls are hearing that sex is abusive. How do we deal with that and at the same time talk about sexual pleasure? The abuse is so shocking and frightening, pleasure seems secondary by comparison.
Wylie-Kellermann: On a different subject, do you draw the same kind of lines with assisted suicide that you do with abortion?
Finger: I guess the lines are similar, because ultimately I do think people have a right to choose to die. But I don’t believe in a legal right to assisted suicide.
Wylie-Kellermann: What’s the difference between that and abortion? Why wouldn’t you say, “It’s between the individual and his or her doctor”?
Finger: Because you can’t give yourself an abortion, but you can commit suicide without outside help. I’m not so much uncomfortable with individual cases as I am with the trend culturally. There’s suddenly a social movement in support of assisted suicide.
Wylie-Kellermann: Why has this movement arisen now?
Finger: I think we have an increasing intolerance for suffering, for the idea of aging and death. We always think the best death is a quick death. People say, “I hope I get hit by a truck!”
There is also the fact that the Social Security system is running out of money and the baby-boomer generation is aging. People talk of our generation as a sea of gray set to engulf the younger generations. It’s like eugenic abortion at the other end: get rid of what’s in your way, what slows you down, what is burdensome.
I am very concerned an expectation will develop that, if you become terminally ill or physically disabled, you ought to get out of the way. I really worry about pressure being put on people. I also know that, if I had terminal cancer, there might be a point where I would say, “This is more pain than I can stand,” and would want to choose suicide. On the other hand, cancer patients frequently say, “When I get to such-and-such point, I’ll kill myself,” but when they get to that point they don’t want to go through with it. It’s very hard to predict.
A lot of the pain and difficulty of dying from cancer is an outgrowth of medical interference in the first place. If treatment options were presented realistically, a lot of people would choose no treatment, because often all it does is prolong a painful condition that might end more quickly on its own.
But assisted suicide is not presented as being only for people who are terminally ill. It’s being used for people in chronic pain or people who have severe disabilities. In those cases, I think what people really need is social change, not assisted suicide. It’s very significant that almost all the patients Jack Kevorkian has helped to die have been women. One woman with MS had been abandoned by her husband, which is a very common occurrence among disabled women. Another woman had chronic vaginal pain, and, as we know, women’s gynecological complaints often don’t get serious medical attention. Clearly this woman should have been referred to specialists who could really help her deal with her pain, rather than being offered suicide as a way out. Kevorkian also helped a woman with Alzheimer’s to die when it was very clear that she was doing it only because she didn’t want to be a burden to her family, that she was used to taking care of them and didn’t want them to have to take care of her. It’s the female role to say: “I don’t want to be a burden; I don’t want people to have to take care of me. This will be too hard on my family.”
We’re being told that medicine is supposed to get rid of disabled people — either by curing us or killing us. This idea is deeply rooted in industrial culture. I think there will be tremendous social pressure to “choose” suicide in the future. We’ll also have people being declared incompetent to make the choice, and the choice being made for them.
Wylie-Kellermann: So you believe assisted suicide will be widely abused.
Finger: I think there will be a social expectation: you are dying, it’s expensive, people you love are crying, so “do the right thing.” Especially for a population that’s prone to depression, as elderly and disabled people are, that kind of message can be overwhelming and dangerous.
About ten years ago, there was a California ballot initiative for doctor-assisted suicide. People opposed it when they realized it would allow doctors to kill their mistakes: if a doctor botched a patient’s care and was looking at a lawsuit, he or she might pressure that patient into suicide.
Another issue that I see going along with assisted suicide is denial of care. Health-maintenance organizations are really scary for disabled people, because it’s easy to deny us care. We’re not a huge class of people who can get up and scream and make a fuss.
In my own experience, I’ve thought about changing to a managed-care plan, but two things they don’t cover are wheelchair batteries and wheelchair repairs. Now, that’s absolutely outrageous. If repairs to durable medical equipment are not part of my health care, I don’t know what is. And I have some financial resources. It’s even more scary for people who can’t afford to buy new wheelchair batteries or get their wheelchair fixed themselves. That kind of limiting of care combined with a push for assisted suicide is really dangerous.
Wylie-Kellermann: If people had adequate social support, such as that provided by attendant care, would their outlook be different?
Finger: Yes. It’s not just attendant care, but disability rights across the board. Take the case of Larry McAfee, a thirty-four-year-old quadriplegic who was living in an intensive-care unit because he was on a respirator. Though disabled, he was healthy and didn’t belong in a hospital, but no nursing home would take him, and Georgia Medicaid wouldn’t pay for attendant care. In anger and desperation, he initiated a right-to-die suit; he had no other options. The state, though it wouldn’t help him to live a normal life, granted him the right to die. Luckily, he was transferred to an Alabama nursing home, where doctors and others helped him to see that, with money to purchase the proper technology and assistance — less, incidentally, than it cost to keep him in a nursing home — he could live on his own. He ended up not killing himself, and even joined the battle to demand that Medicaid help disabled people live independently, rather than warehousing them.
Wylie-Kellermann: The arguments you make against assisted suicide are often being raised by people with reactionary politics.
Finger: To a certain extent. The religious Right raises some. The reaction of progressives has been discouraging. For the most part, they support Kevorkian. I don’t think they understand what a tremendously dangerous path this is. The genocide in Germany began with disabled people, and it was conducted fairly openly. There were articles about it published in the Western press. The first gas chambers were literally transported from the basements of German mental hospitals to the concentration camps. The first people who were killed in concentration camps were those diagnosed as sick. Throughout the Holocaust, doctors were the ones who decided who went to the gas chambers and who went to the work camps. It was always a quasi-medical decision.
Wylie-Kellermann: What about people who say they’re too tired and too stretched to care for a dependent older person?
Finger: We’re not in Nazi Germany. You don’t get to kill Granny because Granny irritates you. We need to reexamine the way the elderly are treated in this society. People are living longer and are going to be retired for a larger part of their lives unless we alter our notions of what work is and how the workday is arranged. A lot of the despair among elderly people has to do with our treating them like garbage. It’s hard to stay engaged in a world that doesn’t want you. We have some major readjustment to do, and I think “Get rid of them” is the worst possible response.
I have absolutely no problem with somebody saying, “I don’t want to go to a hospital and be kept alive on machines for eight weeks. I want to go to a hospice and let things take their course.” I think part of what fuels the assisted-suicide movement is the fear of ending up on a respirator. People have confused assisted suicide with the idea that one ought to be able to control the circumstances of one’s death. The problem is that death is itself a loss of control. Still, we insist that, with assisted suicide, we can control death; we can contain it. And of course we can’t. I think we have to look at what’s good about not having complete control over our health.
Wylie-Kellermann: Is there anything good about it?
Finger: Yeah: that’s life. That’s what it means to be a human being. People get sick, they age, and they die. They have physical problems along the way. Anything can happen to your body. Yet it’s heresy to say that people don’t have control over their health.
Take me, for example: I wear my seatbelt. I have wonderful blood pressure. I have low cholesterol. My grandparents all lived into their late eighties. I often think I’m guaranteed to do the same, because of the way I live, but I have to remind myself that, while I have some influence over it, I don’t have control.
Wylie-Kellermann: What would you say to people who are in a position of needing special care?
Finger: The way our society defines dependence and independence is absurd. Everybody is enormously dependent on other people for everything, including their housing, food, and clothing.
Wylie-Kellermann: But that’s a level of dependence we’re willing to accept.
Finger: Right. We have this notion that some dependencies are OK and others are not. It’s OK to need a car; it’s not OK to need a wheelchair. It’s OK to go to a hairstylist to get your hair done; it’s not OK to need an attendant to wash your face and hands. We’re all locked into dependency in ways that we don’t even begin to think about.
Often there is an idea that disabled people are too dependent and never give anything back to society. In prenatal counseling, they have charts that show what it costs to raise a child with spina bifida. Someone at this genetics conference said, “What does it cost to send your child to Harvard Medical School?” That isn’t seen as a drain on society, and yet we assume that a person with a disability is a drain.
What I would say to a person who needs more care is “That’s part of life.” You can try to maximize people’s independence so that their lives aren’t run by caregivers and they have some choice about the way they live. But I would just say that dependence is part of life.
Wylie-Kellermann: How do you reconcile the fact that your views on assisted suicide and abortion are not dissimilar to those of the Right?
Finger: To my mind, what’s at the root of assisted suicide is this notion that human beings are worthwhile only if they’re “productive,” which has its basis in capitalist thinking. I see that as very different from the Right’s position, which is to impose religious beliefs on people who may not agree with them.
As a progressive, I avoid taking a knee-jerk stand just to oppose the Right. The Left is not always supportive of progressive causes. There have been plenty of instances in history where Leftists have done awful things.
Wylie-Kellermann: Do you see ways that the Right can manipulate your position for ends that you wouldn’t like?
Finger: They give a lot of lip service to disability issues, but they don’t want to see radical social change that would make life better for the disabled and the elderly. In fact, a lot of bills being introduced in Congress with the word family in front of them are really attempts to unload the care of the disabled and the elderly back onto individual families. The Right thinks in terms of individuals’ care and compassion, not in terms of social change. They don’t see disabled people as a socially defined group at all.
Wylie-Kellermann: What do you mean?
Finger: We look at the situation of African Americans and say it was socially and politically created by slavery. We look at women’s situation and say social structures create oppression of women. But we don’t think of disability in terms of oppression. We don’t think of it as being something that society actively creates in an ongoing way. We create fear and hatred of disability through the media, through popular culture, through literature. The sense that disabled people are inferior is constantly promulgated. Oppression is evident in what designs are seen as standard and what designs are seen as an accommodation. When I go into the building where I teach, there is a flight of stairs and there’s a wheelchair ramp. There are always people walking on the wheelchair ramp, yet the stairs are seen as “regular” and the wheelchair ramp as “special” — and, of course, it’s off to the side. Why not have two ways of getting into the building that are equal, that are side by side? Rather than talk about the special care that disabled people need, why not talk about radically reexamining our social structure?
Parts of this interview originally appeared in The Witness, 1249 Washington Blvd., Suite 3115, Detroit, MI 48226-1822.
— Ed.
