Johnson: Civil Rights Activist
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
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
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
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?
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-to-life 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-life-decision-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
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 right-to-die spectrum than the U.S. by allowing physician-assisted
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
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
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
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
Cooper: What did you think of the public opinion polls that favored
letting Terri Schiavo die?
continued in ABILITY Magazine subscribe
Other articles in the Jane Pauley issue include Letter From The
Editor, Gillian Friedman, MD; Humor: Whats up Doc?; Headlines: MS Cruise,
Breast Cancer & Court Ruling; Michael Rogers-A Journey of Self-Discovery;
Butterfly Power: Native American Healing; Bipolar Disorder: Standup Comed
Showcase: Sixth Annual Event; World Ability Federation; Events and Conferences...