Circa 2005
America has a long tradition of law based on a reasonable person standard—what would a reasonable person do in a given situation? But what if society’s norm is wrong? What if reasonable people still retain prejudice or remain ignorant of the facts? Could that ever happen? Reasonable people once believed a woman couldn’t make an informed decision to vote, and until the past half-century reasonable people endorsed the segregation of African-Americans.
In recent years, our laws have guaranteed rights for people with disabilities. However, in the mind’s eye of Americans, reasonable people still cannot imagine a reasonable life for people with disabilities. The imbedded cultural response of pity prevails—a bias that Harriet McBryde Johnson has been fighting most of her life. As a lawyer she fights for her clients’ rights in her native state of South Carolina; as a national advocate for civil rights for people with disabilities, she fights to change embedded cultural biases.
Through columns published in The New York Times Magazine, The Washington Post and Slate Magazine, Johnson has challenged the reasonable people in America to broaden their perspectives and shake loose the old stereotypes. In her new book, Too Late to Die Young: Nearly True Tales from a Life (excerpted in the Christopher Meloni issue of ABILITY Magazine), she gives a rich and humorous picture of a full southern life. But interlaced is a nod to the insidious harm caused by the myth of the tragic life with disability. Born with a congenital neuromuscular disorder, she describes how she felt sentenced to death as a child by the images of pity on the Jerry Lewis telethon. As an adult she has seen this bias pervade other areas of American culture, such as the beliefs of Princeton’s controversial bioethicist Peter Singer, who has proposed that babies with disabilities should be killed at birth—and whose arguments she has tactfully disputed in a joint lecture at that campus. Wanting to learn more, ABILITY’s Gillian Friedman, MD, and Chet Cooper talked with this attorney-turned-storyteller.
Chet Cooper: What types of cases do you typically take in your legal practice?
Harriet McBryde Johnson: Most of my cases are very unglamorous Social Security disability appeals. I really like that work. It’s not high profile at all, but it’s direct and immediate to real people. Most of my clients are poor and working people who have absolutely nothing else when they become unable to work. I do some ADA [Americans with Disabilities Act] work—some litigation, like the case described in the book—but that’s a very small part of what I do.
Gillian Friedman: In your book you alluded to the change you’ve seen in the way the ADA is carried out. Can you give us any examples?
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Johnson: Obviously, implementation is a long way from done. Certainly because of the ADA I think we have the expectation that we should be able to go anywhere other people go, and to a much greater extent we can. But implementation is spotty, so you never know what to expect.
Today I went to the beach on the spur of the moment and there was a new parking area overlooking the water that had been built after the ADA; before the ADA, there was absolutely nowhere around here where you could park and see the water. This morning I got out and unloaded, but I still couldn’t get to the beach. So that’s an example of how improvement has been half-and-half. It’s a whole lot better—we can sit and take in the sights and the breeze. But a very little bit of boardwalk could have gotten us all the way to the water’s edge.
Friedman: I’ve seen some of your writing in the popular press about legal cases that have caught national attention, most recently, for example, the Terri Schiavo case. Can you say anything about your observations regarding that case?
Johnson: It’s frustrating to me that it boiled down in the popular discussion to a conflict between right-tolife and right-to-die. I don’t think that’s it at all. I think that we ought to analyze the case in terms of disability discrimination.
Friedman: Can you explain what you mean by disability discrimination?
Johnson: The state of Florida would not have authorized a man to have his non-disabled wife deprived of food and hydration and would not have caused her death that way. It was because of her disability that her death was thought to be appropriate. Beyond that, it was specifically because Mrs. Schiavo was using a feeding tube that the courts were able to call the case an end-of-lifedecision-making case. They conceptualized it as removing life support rather than denying nutrition to a healthy person. I think that is very disturbing, because under the ADA states have to justify treating people differently because of an impairment or because they use an assistive device. I don’t think any of us who are close to the disability community believe that using a feeding tube by itself is life support or that using a feeding tube makes one terminally ill. That’s just Alice-in-Wonderland, upside-down logic. Regardless of how we felt about Mrs. Schiavo’s mental capacity or what we would want to have happen to us if we were in a persistent vegetative state, there are real consequences to being classified as on life support or terminally ill.
We should really be worried about what happens to us. We’ve made it a lot easier in this country to legally kill people with disabilities. In the debates about the Schiavo case we heard people giving blanket statements: “Well, the spouse always knows best,” “The court should not be involved,” “There is no federal interest in this.” Those sweeping statements are really alarming. I think the courts had every reason to be involved, and I wish the decisions had been made in a more defensible way. It’s a scary world to live in right now.
Friedman: One of the disturbing aspects of the case for many people is that the whole concept of substituted judgment—where one person says what another would have wanted—is such a morally gray area. It is very interesting that cultures having many other things in common can have vastly different views about the acceptability of substituted judgment. The Netherlands, for example, which goes much further along the rightto-die spectrum than the U.S. by allowing physicianassisted suicide, has no accepted provision for substituted judgment.
Johnson: I believe there are a few decisions you have to make for yourself. The law recognizes, for example, that if you’re not mentally competent to consent to sex or marriage, your guardian cannot consent for you. If you’re unable to make a will—there might be very good reasons to have a will, you might be saying you would like a will—but if you don’t have the mental capacity to do that, your guardian cannot do it for you. And I think giving up your life is in the same category. If you are not able to speak for yourself, it should be beyond the scope of a guardian to do it for you. I am not talking about situations where it is a judgment call. I think a surrogate can weigh the risks of treatment against the benefits, the dangers against the misery when the outcome is a judgment call. But when there is a conscious, deliberate decision to give up a life, as this was, I think that is something each of us has to decide for ourselves.
Friedman: And certainly the concept of substituted judgment has worrisome implications in a country where there is not universal access to health care.
Johnson: Absolutely.
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Friedman: As opposed to…I’ll use the example of the Netherlands again, which does have universal access to health care but doesn’t allow substituted judgment.
Johnson: Right. I think as far as assisted suicide goes, we shouldn’t even be considering that until we have not only national health care but personal care assistance, affordable housing, all of the things necessary for quality of life. As long as we structure things so caring for a person with a severe disability is catastrophic and very often is a real burden on a family, we’re kind of forcing the choice.
Friedman: The opinion you wrote for The Washington Post about Congress’ intervention in the Schiavo case was a bit more reserved. Why was that?
Johnson: Well, when I wrote that piece I originally wrote it for Slate Magazine. I was responding two days after the congressional action. So my focus was pretty narrow on why I thought it was appropriate for Congress to provide the federal courts with jurisdiction. In that short piece I was trying to lay out why it wasn’t just a matter for the states and why there was a federal interest, and I think it’s based on the idea that the state of Florida was treating Terri Schiavo in a radically different manner because of her disability.
Friedman: Some people would have been very happy with a broader federal bill but were very unhappy with a bill for a single individual. What are your thoughts?
Johnson: I think the legislators did what they could in the time available. I think it would have been dangerous for them to try to write a broader federal bill quickly. If we are going to do that, it’s going to be difficult. It will probably take years to get it right. Legislation needs to be based on accurate information, weighing all the possibilities. In my column, I was responding to people who were saying Congress’ actions were blatantly unconstitutional, that it was not a federal matter. I think it was a legitimate federal matter; Congress passes special legislation for particular people all the time—it’s just rarely so high profile.
Cooper: Did anyone ask your advice in the Schiavo case?
Johnson: No. But I understand the very last wave of appeals the Schindlers [Schiavo’s parents] filed brought up the ADA issues for the first time.
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Cooper: What did you think of the public opinion polls that favored letting Terri Schiavo die?
Johnson: Some of the polling questions I saw were rather slanted. The whole dynamic was presented as a right-to-life issue, with Christian fundamentalism in opposition to right-to-die beliefs, and the polling questions were framed that way. I don’t think most people understood this was a woman who had been alive for 15 years after her injury, and that all she needed was food and water. I think people had the idea she was on some exotic space-aged machine. They thought she was terminally ill and that she was brain-dead. They believed she was suffering, that she had made her wishes very clear, and that it was only a gang of religious fanatics on the other side. And so it is not surprising the polling came out the way it did.
Friedman: My understanding is that some legislation allowing options like living wills and health care powers of attorney did not come about until after Mrs. Schiavo had already sustained her injury. But if she’d had the opportunity to make a living will making her wishes clear, do you think the people who were so opposed to the court’s decision would still have been opposed?
Johnson: Well, I can’t speak for everybody and certainly not for the people who are talking from religious grounds, because I am not religious. I can say personally that if she’d had a health care proxy where she had authorized her husband to make decisions for her and had specifically said he could withdraw food and hydration if she were in a persistent vegetative state, that would have made a huge difference to me. The disability rights organization Not Dead Yet has said they would not have been involved if there had been an advance directive. But I don’t think we can go on casual remarks that are made when people haven’t really thought about the implications. I don’t know how many people have actually told me, “I’d rather die than live like you.” I don’t think we should hold them to that if they show up in the emergency room one day needing a quick operation to stabilize them. “Well, he didn’t want to live that way and he’s going to be in a wheelchair, so don’t save his life.” Most people do change their minds when it happens.
Friedman: There is a process of real contemplation that occurs when it comes to putting things in writing and signing a legally binding determination.
Johnson: Right. As a lawyer, I write health care powers of attorney for people. I explain to them, “When you check this box, if you’re unable to communicate and these conditions are met, your spouse will have the authority to kill you.” And then I say, “Think about the possibility that your spouse may be mistaken about your mental condition, that you may not want it to happen but you may be unable to speak. Think about all of these things and then decide what you want to do.” Most of them go ahead and check the box. They say, “Well, I want my spouse to be able to decide if they get to the point where they’d rather have my life end. I want them to have that power.” If they say that after having the conversation and having really thought about it, that’s fine. They’ve made their wishes clear. But it is a different matter to have a substitute make that decision otherwise.
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Cooper: Changing topics slightly, when did you find you wanted to expand beyond the kind of legal writing you’re talking about to write creatively? You’re a really great writer!
Johnson: Well, thanks. I always enjoyed writing. As a little kid I loved writing letters and book reports. In the writing I do as a lawyer, I enjoy trying to put together my briefs within the rules and make them interesting and persuasive. I really started writing more creatively, though, about 10 years ago, with a short novel about growing up with a disability. That novel will be published in about another year by Henry Holt and marketed to young adults. Initially I was just playing around with a group of characters in a situation and an environment that was very close to me, without any big ambitions.
Then I started writing for New Mobility magazine when a friend who was going to do a piece for them couldn’t do it and suggested I do it. At that point, I fell into the hands of the late Barry Corbet, a wonderfully gifted editor; he gave me lots of encouragement and one thing led to another.
Cooper: He nurtured your talent.
Johnson: Yes. Most lawyers seem to want to be writers at heart, and I was never like that. I wanted to be a lawyer, although the writing was enjoyable. I started writing for the disability press and one thing turned into another, and then when the story about my day at Princeton got into the New York Times, I suddenly had a lot of opportunities I never expected. I am trying to do something with that, but it is a surprising second career I hadn’t planned on.
Cooper: In your book you talk about conducting that joint lecture with Peter Singer at Princeton. It seemed some disability advocates were frustrated with your talking to someone with such drastically opposing viewpoints.
Johnson: Well, I don’t think we should make too much of that. I had discussions with several people before I went out to Princeton. There were concerns that were very reasonable, and I think having those conversations was helpful to me so I could go into that situation carefully and avoid doing any harm to the movement. I think it evolved. The same people who were initially concerned have actually been very supportive all the way through. Obviously, different people make different choices and handle things in different ways, but I haven’t felt that anybody was criticizing me or ostracizing me or anything like that.
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Cooper: Have the people who were initially concerned been able to read your material, and did their views change?
Johnson: I think I had consistent solidarity from my comrades in the movement all the way through. I don’t know there was really anything to change. The folks who regard Singer as, more or less, evil incarnate still do. And that’s okay with me because I think his views are seriously dangerous, so that is not an unreasonable way to look at it. I just told the Princeton story—what I experienced, what it was like from my point of view. To somebody else it would have been a different experience, and that’s fine.
Friedman: I think a dilemma disability advocates can have is, on the one hand, if they never talk to people who have extreme and alternate views, they may find themselves always preaching to the choir. On the other hand, if they engage in equal conversation with those they are trying to educate, they risk giving some credence to strange views.
Johnson: Yes. But I wasn’t talking to Singer in that sense. I made no effort to persuade him; I don’t think he is persuadable. I think we were both talking to the students and the other people in the room.
My feeling was there was more to be gained than lost by my getting involved. The conversation would occur whether I was there or not. But each situation is different, and I have turned down many other opportunities to talk with Singer for the same reasons you’re talking about. I’ve turned down invitations to debate him on the radio because I don’t think it is appropriate to give equal time to a point of view that would not be taken seriously if it were applied to any other minority group. We wouldn’t have a black professional give equal time to debate someone who believes in white supremacy.
Friedman: Right.
Johnson: Our culture has moved past acceptance of white supremacy, and we would think any person who promoted it did not have his or her head on straight. Depending on the situation, there are times when you don’t give a platform to somebody else, but over at Princeton University, Singer has the floor day-in and day-out, and I felt there was no harm in letting them hear another point of view directly.
Friedman: One of the things I think you bring across very nicely in your book is how Singer’s belief system is so firmly grounded in prevalent cultural stereotypes about disability—that to have a disability is by definition to have a tragic life.
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Johnson: Right. And I guess that’s what really struck me at the end of the day and also in a way made him more frightening. I was expecting hate but instead found something more like pity. And pity is everywhere around us. I think it made me see that pity is not only annoying but also dangerous when you take it to its logical conclusion.
Friedman: And there may have been a time when that was true with the racial analogy, too. Fifty years ago, people may have believed that to be born into a different race was inherently to have a more tragic life, but we have outgrown that belief.
Johnson: Right. I’m almost 50 years old and I’ve lived all my life in the South. I was born into a world where most white people in my community accepted the belief that we were by definition superior and black people needed us to take care of them. There was a lot of racism that wasn’t exactly hate. It was patronizing, and people really believed it. Nice Christian people thought, “They’re not as smart as we are, and they need us to be in charge.” It’s somewhat analogous, and people believed what they were told; they believed their cultural assumptions.
Singer has questioned just about every other assumption you can think of, but he hasn’t questioned the core assumption that people with disabilities inherently are suffering or are worse off than other people.
Cooper: I’ve always found it fascinating that Princeton also didn’t understand it. People wouldn’t accept it if universities hired professors teaching racial bigotry.
Johnson: Right, that’s what I have been saying—when a prejudice is the dominant view in a society, it doesn’t feel like prejudice. It’s self-evident truth. We’re still at a point in mainstream culture where disability prejudice doesn’t feel like prejudice. Obviously, look at it, we are suffering—how could we not be, we’re disabled.
Friedman: Do you feel the same way when you hear somebody described as courageous or inspirational for living with a disability?
Johnson: Yes, because what that really says is, you must be courageous to keep on going, as miserable and unfortunate as you are. The courageous overcoming description is really just the flip side of the tragic life expectation. I have heard people say, “You’re AMAZING! You have so much spirit.” Those responses are just the counterpoint to the social expectation that we should be at home curled up in our beds being miserable, so anybody who is not must really have some special spark of something.
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Cooper: In your book, even when you write about these serious topics, you do so with a great deal of humor. Do you typically write with humor or was that specific to this book?
Johnson: No, I like humor. I tend to see the funny side of life, whatever is going on. In this book I wanted to tell stories the way I tell them to friends and acquaintances. I hope the humor comes through, though there are serious passages, ideas and information. I am always very pleased when somebody is reading something I wrote or hears a story I am telling and gets a chuckle.
Cooper: This interview hasn’t had enough chuckles, so we need to come up with something fast.
Johnson: (laughs) We’ve all been serious. We’ve been on death a lot.
Friedman: Do you find it challenging to go back and forth from the technical legal writing you do to the more whimsical memoir-type writing?
Johnson: Yes. When I went to law school it was hard to get in the mindset for legal writing. I already had a style, and it was not a legal style. Legal writing is very rule-bound, and there are certain expected formalities. Everything has to be qualified, and you can’t just make up dialogue. But within that rigid framework, I still try to have some fun with it. I think the creative writing I have done and the experience I have had with varied audiences has made my legal writing better. I try to listen to my clients with a creative ear. One thing I write often in my job is a basic affidavit about why someone can’t work. One I was really proud of was for a woman whom I was trying to get to describe her depression. We were going through a sort of depression checklist, and I asked if she had any trouble with motivation. She was not educated and didn’t really know what that meant, so I said, “Do you have any trouble getting yourself going to do things?” She said, “Well, the other day the dog knocked over all the flower pots on my porch and I didn’t have the heart to go pick them up.” I thought, I couldn’t possibly write something that good. I think it was the writer in me that made me hear how that specific example would get the judge’s attention and show him her depression was for real, not something cooked up to get money. It would put him in her house to see her flowerpots and her dogs, and it would humanize her. You do the same thing when you’re writing creatively— you try to make it real. When you’re writing from real life, you also have to make it real.
Cooper: So are the pots picked up yet?
Johnson: (laughs) It’s been a few years, so I imagine somebody has picked them up!
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Cooper: Do you work with a psychiatrist or psychologist on cases like that?
Johnson: Yes, we work with whatever professionals are available and with the medical evidence that’s available. I also work with the doctors to try to get them to explain things better. So a lot of what I do is to help people communicate with each other. That’s also what I do as a writer. I’m not the kind of writer who’s writing just for the sake of writing. I really want to communicate with people. So whatever I’m writing, it’s really all the same thing, just with different rules, different conventions and different expectations.
Cooper: As an advocate, have you lobbied Congress on how the courts are ruling on the ADA?
Johnson: Yes. Most recently I have been working with the National Council on Disability (NCD). I worked on a report recommending that Congress reverse some of the bad Supreme Court decisions under the ADA. The Council did a wonderful comprehensive report analyzing the problems and recommending specific language to fix them. Part of what went into the report was a round-table with about a dozen lawyers from different backgrounds and interest groups, all involved with disability rights, hashing out what the problems are and how we would like to fix them. That was a very exciting process to be part of, and I hope the report will lead to new legislation in the next couple of years.
Cooper: Was that the first time you worked with NCD?
Johnson: It was certainly the most intensely I’ve worked with them. I was peripherally involved with the effort to pass the ADA—I was one of thousands involved in that. That was also an exciting time. You know, despite what the courts have done, I think the advocacy community really did some fine work with the ADA. It has made things better.
Cooper: Speaking of leaders in the advocacy community, did you know Senator Tom Harkin is writing a regular column for ABILITY?
Johnson: No, I didn’t. That’s great! Senator Harkin is one of the few people I would call a hero. He has done wonderful work.
Cooper: We’ll keep that in so he can read it!
Johnson: (laughs) Okay. When he ran for president, I was co-chair of the county committee for Harkin. That is one of the stories that is not in the book.
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Cooper: When you say “one of the stories”—are there more stories you can share with us?
Johnson: There are a lot. (laughs) I had to select stories I thought would fit and not duplicate others. I guess the main one I should have thought more about including was a hurricane story, because every citizen of the low country has a hurricane story.
Cooper: Do you have one you could think of now?
Johnson: Hurricane Hugo, but as you know from reading the book all my stories are long, so I don’t have time to tell you right now.
Cooper: We can talk later—I’ll give you my cell phone number.
Johnson: (laughs).
Friedman: Your book was so captivating, I didn’t want to put it down.
Johnson: Well that’s what I love to hear. I hope it will find its way to people who don’t normally buy books or read books about disability. I hope people see it as an interesting story with a different slant on things. One thing that kept surprising me was how often it wasn’t disability making the difference in whatever was going on, but other things. Like the fact I was from the South or even that I am white or female or a lawyer or whatever. Disability is one part of my experience, but like everybody, I found I’m complicated. I had fun writing this book, and I hope it will find its way to people who have fun reading it. I use the lyrical structure of a sermon in the first essay, but overall I tried not to preach at anybody, just stick close to my own experience, whatever it was, good or bad.
Harriet McBryde Johnson’s Too Late to Die Young: Nearly True Tales from a Life, copyright 2005 by Henry Holt and Company, is available now in bookstores.
