NYTimes.com Article: Unspeakable Conversations
 
 

Unspeakable Conversations

February 16, 2003
By HARRIET McBRYDE JOHNSON



He insists he doesn't want to kill me. He simply thinks it
would have been better, all things considered, to have
given my parents the option of killing the baby I once was,
and to let other parents kill similar babies as they come
along and thereby avoid the suffering that comes with lives
like mine and satisfy the reasonable preferences of parents
for a different kind of child. It has nothing to do with
me. I should not feel threatened.

Whenever I try to wrap my head around his tight string of
syllogisms, my brain gets so fried it's . . . almost fun.
Mercy! It's like ''Alice in Wonderland.''

It is a chilly Monday in late March, just less than a year
ago. I am at Princeton University. My host is Prof. Peter
Singer, often called -- and not just by his book publicist
-- the most influential philosopher of our time. He is the
man who wants me dead. No, that's not at all fair. He wants
to legalize the killing of certain babies who might come to
be like me if allowed to live. He also says he believes
that it should be lawful under some circumstances to kill,
at any age, individuals with cognitive impairments so
severe that he doesn't consider them ''persons.'' What does
it take to be a person? Awareness of your own existence in
time. The capacity to harbor preferences as to the future,
including the preference for continuing to live.

At this stage of my life, he says, I am a person. However,
as an infant, I wasn't. I, like all humans, was born
without self-awareness. And eventually, assuming my brain
finally gets so fried that I fall into that wonderland
where self and other and present and past and future blur
into one boundless, formless all or nothing, then I'll lose
my personhood and therefore my right to life. Then, he
says, my family and doctors might put me out of my misery,
or out of my bliss or oblivion, and no one count it murder.


I have agreed to two speaking engagements. In the morning,
I talk to 150 undergraduates on selective infanticide. In
the evening, it is a convivial discussion, over dinner, of
assisted suicide. I am the token cripple with an opposing
view.

I had several reasons for accepting Singer's invitation,
some grounded in my involvement in the disability rights
movement, others entirely personal. For the movement, it
seemed an unusual opportunity to experiment with modes of
discourse that might work with very tough audiences and
bridge the divide between our perceptions and theirs. I
didn't expect to straighten out Singer's head, but maybe I
could reach a student or two. Among the personal reasons: I
was sure it would make a great story, first for telling and
then for writing down.

By now I've told it to family and friends and colleagues,
over lunches and dinners, on long car trips, in scads of
e-mail messages and a couple of formal speeches. But it
seems to be a story that just won't settle down. After all
these tellings, it still lacks a coherent structure; I'm
miles away from a rational argument. I keep getting
interrupted by questions -- like these:

Q: Was he totally grossed out by your physical appearance?


A: He gave no sign of it. None whatsoever.

Q: How did he handle having to interact with someone like
you?

A: He behaved in every way appropriately, treated me as a
respected professional acquaintance and was a gracious and
accommodating host.

Q: Was it emotionally difficult for you to take part in a
public discussion of whether your life should have
happened?

A: It was very difficult. And horribly easy.

Q: Did he get that job at Princeton because they like his
ideas on killing disabled babies?

A: It apparently didn't hurt, but he's most famous for
animal rights. He's the author of ''Animal Liberation.''

Q: How can he put so much value on animal life and so
little value on human life?

That last question is the only one I avoid. I used to say I
don't know; it doesn't make sense. But now I've read some
of Singer's writing, and I admit it does make sense --
within the conceptual world of Peter Singer. But I don't
want to go there. Or at least not for long.

So I will start from those other questions and see where
the story goes this time.


That first question, about my physical appearance, needs
some explaining.

It's not that I'm ugly. It's more that most people don't
know how to look at me. The sight of me is routinely
discombobulating. The power wheelchair is enough to inspire
gawking, but that's the least of it. Much more impressive
is the impact on my body of more than four decades of a
muscle-wasting disease. At this stage of my life, I'm Karen
Carpenter thin, flesh mostly vanished, a jumble of bones in
a floppy bag of skin. When, in childhood, my muscles got
too weak to hold up my spine, I tried a brace for a while,
but fortunately a skittish anesthesiologist said no to
fusion, plates and pins -- all the apparatus that might
have kept me straight. At 15, I threw away the back brace
and let my spine reshape itself into a deep twisty S-curve.
Now my right side is two deep canyons. To keep myself
upright, I lean forward, rest my rib cage on my lap, plant
my elbows beside my knees. Since my backbone found its own
natural shape, I've been entirely comfortable in my skin.

I am in the first generation to survive to such
decrepitude. Because antibiotics were available, we didn't
die from the childhood pneumonias that often come with
weakened respiratory systems. I guess it is natural enough
that most people don't know what to make of us.

Two or three times in my life -- I recall particularly one
largely crip, largely lesbian cookout halfway across the
continent -- I have been looked at as a rare kind of
beauty. There is also the bizarre fact that where I live,
Charleston, S.C., some people call me Good Luck Lady: they
consider it propitious to cross my path when a hurricane is
coming and to kiss my head just before voting day. But most
often the reactions are decidedly negative. Strangers on
the street are moved to comment:

I admire you for being out; most people would give up.
God
bless you! I'll pray for you.
You don't let the pain hold you back, do you?
If I had to
live like you, I think I'd kill myself.

I used to try to explain that in fact I enjoy my life, that
it's a great sensual pleasure to zoom by power chair on
these delicious muggy streets, that I have no more reason
to kill myself than most people. But it gets tedious. God
didn't put me on this street to provide disability
awareness training to the likes of them. In fact, no god
put anyone anywhere for any reason, if you want to know.

But they don't want to know. They think they know
everything there is to know, just by looking at me. That's
how stereotypes work. They don't know that they're
confused, that they're really expressing the
discombobulation that comes in my wake.

So. What stands out when I recall first meeting Peter
Singer in the spring of 2001 is his apparent immunity to my
looks, his apparent lack of discombobulation, his immediate
ability to deal with me as a person with a particular point
of view.

Then, 2001. Singer has been invited to the College of
Charleston, not two blocks from my house. He is to lecture
on ''Rethinking Life and Death.'' I have been dispatched by
Not Dead Yet, the national organization leading the
disability-rights opposition to legalized assisted suicide
and disability-based killing. I am to put out a leaflet and
do something during the Q. and A.

On arriving almost an hour early to reconnoiter, I find the
scene almost entirely peaceful; even the boisterous display
of South Carolina spring is muted by gray wisps of Spanish
moss and mottled oak bark.

I roll around the corner of the building and am confronted
with the unnerving sight of two people I know sitting on a
park bench eating veggie pitas with Singer. Sharon is a
veteran activist for human rights. Herb is South Carolina's
most famous atheist. Good people, I've always thought --
now sharing veggie pitas and conversation with a proponent
of genocide. I try to beat a retreat, but Herb and Sharon
have seen me. Sharon tosses her trash and comes over. After
we exchange the usual courtesies, she asks, ''Would you
like to meet Professor Singer?''

She doesn't have a clue. She probably likes his book on
animal rights. ''I'll just talk to him in the Q. and A.''

But Herb, with Singer at his side, is fast approaching.
They are looking at me, and Herb is talking, no doubt
saying nice things about me. He'll be saying that I'm a
disability rights lawyer and that I gave a talk against
assisted suicide at his secular humanist group a while
back. He didn't agree with everything I said, he'll say,
but I was brilliant. Singer appears interested, engaged. I
sit where I'm parked. Herb makes an introduction. Singer
extends his hand.

I hesitate. I shouldn't shake hands with the Evil One. But
he is Herb's guest, and I simply can't snub Herb's guest at
the college where Herb teaches. Hereabouts, the rule is
that if you're not prepared to shoot on sight, you have to
be prepared to shake hands. I give Singer the three fingers
on my right hand that still work. ''Good afternoon, Mr.
Singer. I'm here for Not Dead Yet.'' I want to think he
flinches just a little. Not Dead Yet did everything
possible to disrupt his first week at Princeton. I sent a
check to the fund for the 14 arrestees, who included
comrades in power chairs. But if Singer flinches, he
instantly recovers. He answers my questions about the
lecture format. When he says he looks forward to an
interesting exchange, he seems entirely sincere.


It is an interesting exchange. In the lecture hall that
afternoon, Singer lays it all out. The ''illogic'' of
allowing abortion but not infanticide, of allowing
withdrawal of life support but not active killing. Applying
the basic assumptions of preference utilitarianism, he
spins out his bone-chilling argument for letting parents
kill disabled babies and replace them with nondisabled
babies who have a greater chance at happiness. It is all
about allowing as many individuals as possible to fulfill
as many of their preferences as possible.

As soon as he's done, I get the microphone and say I'd like
to discuss selective infanticide. As a lawyer, I disagree
with his jurisprudential assumptions. Logical inconsistency
is not a sufficient reason to change the law. As an
atheist, I object to his using religious terms (''the
doctrine of the sanctity of human life'') to characterize
his critics. Singer takes a note pad out of his pocket and
jots down my points, apparently eager to take them on, and
I proceed to the heart of my argument: that the presence or
absence of a disability doesn't predict quality of life. I
question his replacement-baby theory, with its assumption
of ''other things equal,'' arguing that people are not
fungible. I draw out a comparison of myself and my
nondisabled brother Mac (the next-born after me), each of
us with a combination of gifts and flaws so peculiar that
we can't be measured on the same scale.

He responds to each point with clear and lucid
counterarguments. He proceeds with the assumption that I am
one of the people who might rightly have been killed at
birth. He sticks to his guns, conceding just enough to show
himself open-minded and flexible. We go back and forth for
10 long minutes. Even as I am horrified by what he says,
and by the fact that I have been sucked into a civil
discussion of whether I ought to exist, I can't help being
dazzled by his verbal facility. He is so respectful, so
free of condescension, so focused on the argument, that by
the time the show is over, I'm not exactly angry with him.
Yes, I am shaking, furious, enraged -- but it's for the big
room, 200 of my fellow Charlestonians who have listened
with polite interest, when in decency they should have run
him out of town on a rail.

My encounter with Peter Singer merits a mention in my
annual canned letter that December. I decide to send Singer
a copy. In response, he sends me the nicest possible e-mail
message. Dear Harriet (if he may) . . . Just back from
Australia, where he's from. Agrees with my comments on the
world situation. Supports my work against
institutionalization. And then some pointed questions to
clarify my views on selective infanticide.

I reply. Fine, call me Harriet, and I'll reciprocate in the
interest of equality, though I'm accustomed to more
formality. Skipping agreeable preambles, I answer his
questions on disability-based infanticide and pose some of
my own. Answers and more questions come back. Back and
forth over several weeks it proceeds, an engaging
discussion of baby killing, disability prejudice and
related points of law and philosophy. Dear Harriet. Dear
Peter.

Singer seems curious to learn how someone who is as good an
atheist as he is could disagree with his entirely
reasonable views. At the same time, I am trying to plumb
his theories. What has him so convinced it would be best to
allow parents to kill babies with severe disabilities, and
not other kinds of babies, if no infant is a ''person''
with a right to life? I learn it is partly that both
biological and adoptive parents prefer healthy babies. But
I have trouble with basing life-and-death decisions on
market considerations when the market is structured by
prejudice. I offer a hypothetical comparison: ''What about
mixed-race babies, especially when the combination is
entirely nonwhite, who I believe are just about as
unadoptable as babies with disabilities?'' Wouldn't a law
allowing the killing of these undervalued babies validate
race prejudice? Singer agrees there is a problem. ''It
would be horrible,'' he says, ''to see mixed-race babies
being killed because they can't be adopted, whereas white
ones could be.'' What's the difference? Preferences based
on race are unreasonable. Preferences based on ability are
not. Why? To Singer, it's pretty simple: disability makes a
person ''worse off.''

Are we ''worse off''? I don't think so. Not in any
meaningful sense. There are too many variables. For those
of us with congenital conditions, disability shapes all we
are. Those disabled later in life adapt. We take
constraints that no one would choose and build rich and
satisfying lives within them. We enjoy pleasures other
people enjoy, and pleasures peculiarly our own. We have
something the world needs.

Pressing me to admit a negative correlation between
disability and happiness, Singer presents a situation:
imagine a disabled child on the beach, watching the other
children play.

It's right out of the telethon. I expected something more
sophisticated from a professional thinker. I respond: ''As
a little girl playing on the beach, I was already aware
that some people felt sorry for me, that I wasn't
frolicking with the same level of frenzy as other children.
This annoyed me, and still does.'' I take the time to write
a detailed description of how I, in fact, had fun playing
on the beach, without the need of standing, walking or
running. But, really, I've had enough. I suggest to Singer
that we have exhausted our topic, and I'll be back in touch
when I get around to writing about him.

He responds by inviting me to Princeton. I fire off an
immediate maybe.


Of course I'm flattered. Mama will be impressed.

But
there are things to consider. Not Dead Yet says -- and I
completely agree -- that we should not legitimate Singer's
views by giving them a forum. We should not make disabled
lives subject to debate. Moreover, any spokesman chosen by
the opposition is by definition a token. But even if I'm a
token, I won't have to act like one. And anyway, I'm kind
of stuck. If I decline, Singer can make some hay: ''I
offered them a platform, but they refuse rational
discussion.'' It's an old trick, and I've laid myself wide
open.

My invitation is to have an exchange of views with Singer
during his undergraduate course. He also proposes a second
''exchange,'' open to the whole university, later in the
day. This sounds a lot like debating my life -- and on my
opponent's turf, with my opponent moderating, to boot. I
offer a counterproposal, to which Singer proves amenable. I
will open the class with some comments on infanticide and
related issues and then let Singer grill me as hard as he
likes before we open it up for the students. Later in the
day, I might take part in a discussion of some other
disability issue in a neutral forum. Singer suggests a
faculty-student discussion group sponsored by his
department but with cross-departmental membership. The
topic I select is ''Assisted Suicide, Disability
Discrimination and the Illusion of Choice: A Disability
Rights Perspective.'' I inform a few movement colleagues of
this turn of events, and advice starts rolling in. I decide
to go with the advisers who counsel me to do the gig, lie
low and get out of Dodge.

I ask Singer to refer me to the person who arranges travel
at Princeton. I imagine some capable and unflappable woman
like my sister, Beth, whose varied job description at a
North Carolina university includes handling visiting
artists. Singer refers me to his own assistant, who
certainly seems capable and unflappable enough. However,
almost immediately Singer jumps back in via e-mail. It
seems the nearest hotel has only one wheelchair-accessible
suite, available with two rooms for $600 per night. What to
do? I know I shouldn't be so accommodating, but I say I can
make do with an inaccessible room if it has certain
features. Other logistical issues come up. We go back and
forth. Questions and answers. Do I really need a
lift-equipped vehicle at the airport? Can't my assistant
assist me into a conventional car? How wide is my
wheelchair?

By the time we're done, Singer knows that I am 28 inches
wide. I have trouble controlling my wheelchair if my hand
gets cold. I am accustomed to driving on rough, irregular
surfaces, but I get nervous turning on steep slopes. Even
one step is too many. I can swallow purees, soft bread and
grapes. I use a bedpan, not a toilet. None of this is a
secret; none of it cause for angst. But I do wonder whether
Singer is jotting down my specs in his little note pad as
evidence of how ''bad off'' people like me really are.

I realize I must put one more issue on the table:
etiquette. I was criticized within the movement when I
confessed to shaking Singer's hand in Charleston, and some
are appalled that I have agreed to break bread with him in
Princeton. I think they have a very good point, but, again,
I'm stuck. I'm engaged for a day of discussion, not a
picket line. It is not in my power to marginalize Singer at
Princeton; nothing would be accomplished by displays of
personal disrespect. However, chumminess is clearly
inappropriate. I tell Singer that in the lecture hall it
can't be Harriet and Peter; it must be Ms. Johnson and Mr.
Singer.

He seems genuinely nettled. Shouldn't it be Ms. Johnson and
Professor Singer, if I want to be formal? To counter, I
invoke the ceremonial low-country usage, Attorney Johnson
and Professor Singer, but point out that Mr./Ms. is the
custom in American political debates and might seem more
normal in New Jersey. All right, he says. Ms./Mr. it will
be.

I describe this awkward social situation to the lawyer in
my office who has served as my default lunch partner for
the past 14 years. He gives forth a full-body shudder.

''That poor, sorry son of a bitch! He has no idea what he's
in for.''

Being a disability rights lawyer lecturing at Princeton
does confer some cachet at the Newark airport. I need all
the cachet I can get. Delta Airlines has torn up my power
chair. It is a fairly frequent occurrence for any air
traveler on wheels.

When they inform me of the damage in Atlanta, I throw a
monumental fit and tell them to have a repair person meet
me in Newark with new batteries to replace the ones
inexplicably destroyed. Then I am told no new batteries can
be had until the morning. It's Sunday night. On arrival in
Newark, I'm told of a plan to put me up there for the night
and get me repaired and driven to Princeton by 10 a.m.

''That won't work. I'm lecturing at 10. I need to get there
tonight, go to sleep and be in my right mind tomorrow.''

''What? You're lecturing? They told us it was a conference.
We need to get you fixed tonight!''

Carla, the gate agent, relieves me of the need to throw any
further fits by undertaking on my behalf the fit of all
fits.

Carmen, the personal assistant with whom I'm traveling,
pushes me in my disabled chair around the airport in search
of a place to use the bedpan. However, instead of
diaper-changing tables, which are functional though far
from private, we find a flip-down plastic shelf that
doesn't look like it would hold my 70 pounds of body
weight. It's no big deal; I've restricted my fluids. But
Carmen is a little freaked. It is her first adventure in
power-chair air travel. I thought I prepared her for the
trip, but I guess I neglected to warn her about the
probability of wheelchair destruction. I keep forgetting
that even people who know me well don't know much about my
world.

We reach the hotel at 10:15 p.m., four hours late.


I
wake up tired. I slept better than I would have slept in
Newark with an unrepaired chair, but any hotel bed is a
near guarantee of morning crankiness. I tell Carmen to
leave the TV off. I don't want to hear the temperature.

I do the morning stretch. Medical people call it passive
movement, but it's not really passive. Carmen's hands move
my limbs, following my precise instructions, her strength
giving effect to my will. Carmen knows the routine, so it
is in near silence that we begin easing slowly into the
day. I let myself be propped up to eat oatmeal and drink
tea. Then there's the bedpan and then bathing and dressing,
still in bed. As the caffeine kicks in, silence gives way
to conversation about practical things. Carmen lifts me
into my chair and straps a rolled towel under my ribs for
comfort and stability. She tugs at my clothes to remove
wrinkles that could cause pressure sores. She switches on
my motors and gives me the means of moving without anyone's
help. They don't call it a power chair for nothing.

I drive to the mirror. I do my hair in one long braid. Even
this primal hairdo requires, at this stage of my life,
joint effort. I undo yesterday's braid, fix the part and
comb the hair in front. Carmen combs where I can't reach. I
divide the mass into three long hanks and start the braid
just behind my left ear. Section by section, I hand it over
to her, and her unimpaired young fingers pull tight,
crisscross, until the braid is fully formed.

A big polyester scarf completes my costume. Carmen lays it
over my back. I tie it the way I want it, but Carmen starts
fussing with it, trying to tuck it down in the back. I tell
her that it's fine, and she stops.

On top of the scarf, she wraps the two big shawls that I
hope will substitute for an overcoat. I don't own any real
winter clothes. I just stay out of the cold, such cold as
we get in Charleston.

We review her instructions for the day. Keep me in view and
earshot. Be instantly available but not intrusive. Be
polite, but don't answer any questions about me. I am glad
that she has agreed to come. She's strong, smart, adaptable
and very loyal. But now she is digging under the shawls,
fussing with that scarf again.

''Carmen. What are you doing?''

''I thought I could hide
this furry thing you sit on.''

''Leave it. Singer knows lots of people eat meat. Now he'll
know some crips sit on sheepskin.''


The walk is cold but mercifully short. The hotel is just
across the street from Princeton's wrought-iron gate and a
few short blocks from the building where Singer's assistant
shows us to the elevator. The elevator doubles as the
janitor's closet -- the cart with the big trash can and all
the accouterments is rolled aside so I can get in.
Evidently there aren't a lot of wheelchair people using
this building.

We ride the broom closet down to the basement and are led
down a long passageway to a big lecture hall. As the
students drift in, I engage in light badinage with the
sound technician. He is squeamish about touching me, but I
insist that the cordless lavaliere is my mike of choice. I
invite him to clip it to the big polyester scarf.

The students enter from the rear door, way up at ground
level, and walk down stairs to their seats. I feel like an
animal in the zoo. I hadn't reckoned on the architecture,
those tiers of steps that separate me from a human wall of
apparent physical and mental perfection, that keep me
confined down here in my pit.

It is 5 before 10. Singer is loping down the stairs. I feel
like signaling to Carmen to open the door, summon the broom
closet and get me out of here. But Singer greets me
pleasantly and hands me Princeton's check for $500, the fee
he offered with apologies for its inadequacy.

So. On with the show.


My talk to the students is pretty
Southern. I've decided to pound them with heart, hammer
them with narrative and say ''y'all'' and ''folks.'' I play
with the emotional tone, giving them little peaks and
valleys, modulating three times in one 45-second patch. I
talk about justice. Even beauty and love. I figure they
haven't been getting much of that from Singer.

Of course, I give them some argument too. I mean to honor
my contractual obligations. I lead with the hypothetical
about mixed-race, nonwhite babies and build the ending
around the question of who should have the burden of proof
as to the quality of disabled lives. And woven throughout
the talk is the presentation of myself as a representative
of a minority group that has been rendered invisible by
prejudice and oppression, a participant in a discussion
that would not occur in a just world.

I let it go a little longer than I should. Their faces show
they're going where I'm leading, and I don't look forward
to letting them go. But the clock on the wall reminds me of
promises I mean to keep, and I stop talking and submit
myself to examination and inquiry.

Singer's response is surprisingly soft. Maybe after hearing
that this discussion is insulting and painful to me, he
doesn't want to exacerbate my discomfort. His reframing of
the issues is almost pro forma, abstract, entirely
impersonal. Likewise, the students' inquiries are abstract
and fairly predictable: anencephaly, permanent
unconsciousness, eugenic abortion. I respond to some of
them with stories, but mostly I give answers I could have
e-mailed in.

I call on a young man near the top of the room.

''Do you
eat meat?''

''Yes, I do.''

''Then how do you justify--''

''I haven't made any study
of animal rights, so anything I could say on the subject
wouldn't be worth everyone's time.''

The next student wants to work the comparison of disability
and race, and Singer joins the discussion until he elicits
a comment from me that he can characterize as racist. He
scores a point, but that's all right. I've never claimed to
be free of prejudice, just struggling with it.

Singer proposes taking me on a walk around campus, unless I
think it would be too cold. What the hell? ''It's probably
warmed up some. Let's go out and see how I do.''

He doesn't know how to get out of the building without
using the stairs, so this time it is my assistant leading
the way. Carmen has learned of another elevator, which
arrives empty. When we get out of the building, she falls
behind a couple of paces, like a respectful chaperone.

In the classroom there was a question about keeping alive
the unconscious. In response, I told a story about a family
I knew as a child, which took loving care of a
nonresponsive teenage girl, acting out their unconditional
commitment to each other, making all the other children,
and me as their visitor, feel safe. This doesn't satisfy
Singer. ''Let's assume we can prove, absolutely, that the
individual is totally unconscious and that we can know,
absolutely, that the individual will never regain
consciousness.''

I see no need to state an objection, with no stenographer
present to record it; I'll play the game and let him
continue.

''Assuming all that,'' he says, ''don't you think
continuing to take care of that individual would be a bit
-- weird?''

''No. Done right, it could be profoundly beautiful.''


''But what about the caregiver, a woman typically, who is
forced to provide all this service to a family member,
unable to work, unable to have a life of her own?''

''That's not the way it should be. Not the way it has to
be. As a society, we should pay workers to provide that
care, in the home. In some places, it's been done that way
for years. That woman shouldn't be forced to do it, any
more than my family should be forced to do my care.''

Singer takes me around the architectural smorgasbord that
is Princeton University by a route that includes not one
step, unramped curb or turn on a slope. Within the strange
limits of this strange assignment, it seems Singer is doing
all he can to make me comfortable.

He asks what I thought of the students' questions.

''They
were fine, about what I expected. I was a little surprised
by the question about meat eating.''

''I apologize for that. That was out of left field. But --
I think what he wanted to know is how you can have such
high respect for human life and so little respect for
animal life.''

''People have lately been asking me the converse, how you
can have so much respect for animal life and so little
respect for human life.''

''And what do you answer?''

''I say I don't know. It doesn't make a lot of sense to
me.''

''Well, in my view--''

''Look. I have lived in blissful ignorance all these years,
and I'm not prepared to give that up today.''

''Fair enough,'' he says and proceeds to recount bits of
Princeton history. He stops. ''This will be of particular
interest to you, I think. This is where your colleagues
with Not Dead Yet set up their blockade.'' I'm grateful for
the reminder. My brothers and sisters were here before me
and behaved far more appropriately than I am doing.


A van delivers Carmen and me early for the evening forum.
Singer says he hopes I had a pleasant afternoon.

Yes, indeed. I report a pleasant lunch and a very pleasant
nap, and I tell him about the Christopher Reeve Suite in
the hotel, which has been remodeled to accommodate Reeve,
who has family in the area.

''Do you suppose that's the $600 accessible suite they told
me about?''

''Without doubt. And if I'd known it was the Christopher
Reeve Suite, I would have held out for it.''

''Of course you would have!'' Singer laughs. ''And we'd
have had no choice, would we?''

We talk about the disability rights critique of Reeve and
various other topics. Singer is easy to talk to, good
company. Too bad he sees lives like mine as avoidable
mistakes.

I'm looking forward to the soft vegetarian meal that has
been arranged; I'm hungry. Assisted suicide, as difficult
as it is, doesn't cause the kind of agony I felt discussing
disability-based infanticide. In this one, I understand,
and to some degree can sympathize with, the opposing point
of view -- misguided though it is.

My opening sticks to the five-minute time limit. I
introduce the issue as framed by academic articles Not Dead
Yet recommended for my use. Andrew Batavia argues for
assisted suicide based on autonomy, a principle generally
held high in the disability rights movement. In general, he
says, the movement fights for our right to control our own
lives; when we need assistance to effect our choices,
assistance should be available to us as a matter of right.
If the choice is to end our lives, he says, we should have
assistance then as well. But Carol Gill says that it is
differential treatment -- disability discrimination -- to
try to prevent most suicides while facilitating the
suicides of ill and disabled people. The social-science
literature suggests that the public in general, and
physicians in particular, tend to underestimate the quality
of life of disabled people, compared with our own
assessments of our lives. The case for assisted suicide
rests on stereotypes that our lives are inherently so bad
that it is entirely rational if we want to die.

I side with Gill. What worries me most about the proposals
for legalized assisted suicide is their veneer of
beneficence -- the medical determination that, for a given
individual, suicide is reasonable or right. It is not about
autonomy but about nondisabled people telling us what's
good for us.

In the discussion that follows, I argue that choice is
illusory in a context of pervasive inequality. Choices are
structured by oppression. We shouldn't offer assistance
with suicide until we all have the assistance we need to
get out of bed in the morning and live a good life. Common
causes of suicidality -- dependence, institutional
confinement, being a burden -- are entirely curable.
Singer, seated on my right, participates in the discussion
but doesn't dominate it. During the meal, I occasionally
ask him to put things within my reach, and he competently
complies.

I feel as if I'm getting to a few of them, when a student
asks me a question. The words are all familiar, but they're
strung together in a way so meaningless that I can't even
retain them -- it's like a long sentence in Tagalog. I can
only admit my limitations. ''That question's too abstract
for me to deal with. Can you rephrase it?''

He indicates that it is as clear as he can make it, so I
move on.

A little while later, my right elbow slips out from under
me. This is awkward. Normally I get whoever is on my right
to do this sort of thing. Why not now? I gesture to Singer.
He leans over, and I whisper, ''Grasp this wrist and pull
forward one inch, without lifting.'' He follows my
instructions to the letter. He sees that now I can again
reach my food with my fork. And he may now understand what
I was saying a minute ago, that most of the assistance
disabled people need does not demand medical training.

A philosophy professor says, ''It appears that your
objections to assisted suicide are essentially tactical.''

''Excuse me?''

''By that I mean they are grounded in
current conditions of political, social and economic
inequality. What if we assume that such conditions do not
exist?''

''Why would we want to do that?''

''I want to get to the real basis for the position you
take.''

I feel as if I'm losing caste. It is suddenly very clear
that I'm not a philosopher. I'm like one of those old
practitioners who used to visit my law school, full of
bluster about life in the real world. Such a bore! A
once-sharp mind gone muddy! And I'm only 44 -- not all that
old.

The forum is ended, and I've been able to eat very little
of my pureed food. I ask Carmen to find the caterer and get
me a container. Singer jumps up to take care of it. He
returns with a box and obligingly packs my food to go.

When I get home, people are clamoring for the story. The
lawyers want the blow-by-blow of my forensic triumph over
the formidable foe; when I tell them it wasn't like that,
they insist that it was. Within the disability rights
community, there is less confidence. It is generally
assumed that I handled the substantive discussion well, but
people worry that my civility may have given Singer a new
kind of legitimacy. I hear from Laura, a beloved movement
sister. She is appalled that I let Singer provide even
minor physical assistance at the dinner. ''Where was your
assistant?'' she wants to know. How could I put myself in a
relationship with Singer that made him appear so human,
even kind?

I struggle to explain. I didn't feel disempowered; quite
the contrary, it seemed a good thing to make him do some
useful work. And then, the hard part: I've come to believe
that Singer actually is human, even kind in his way. There
ensues a discussion of good and evil and personal
assistance and power and philosophy and tactics for which
I'm profoundly grateful.

I e-mail Laura again. This time I inform her that I've
changed my will. She will inherit a book that Singer gave
me, a collection of his writings with a weirdly appropriate
inscription: ''To Harriet Johnson, So that you will have a
better answer to questions about animals. And thanks for
coming to Princeton. Peter Singer. March 25, 2002.'' She
responds that she is changing her will, too. I'll get the
autographed photo of Jerry Lewis she received as an M.D.A.
poster child. We joke that each of us has given the other a
''reason to live.''

I have had a nice e-mail message from Singer, hoping Carmen
and I and the chair got home without injury, relaying
positive feedback from my audiences -- and taking me to
task for a statement that isn't supported by a relevant
legal authority, which he looked up. I report that we got
home exhausted but unharmed and concede that he has caught
me in a generalization that should have been qualified.
It's clear that the conversation will continue.

I am soon sucked into the daily demands of law practice,
family, community and politics. In the closing days of the
state legislative session, I help get a bill passed that I
hope will move us one small step toward a world in which
killing won't be such an appealing solution to the
''problem'' of disability. It is good to focus on this kind
of work. But the conversations with and about Singer
continue. Unable to muster the appropriate moral judgments,
I ask myself a tough question: am I in fact a silly little
lady whose head is easily turned by a man who gives her a
kind of attention she enjoys? I hope not, but I confess
that I've never been able to sustain righteous anger for
more than about 30 minutes at a time. My view of life tends
more toward tragedy.


The tragic view comes closest to describing how I now look
at Peter Singer. He is a man of unusual gifts, reaching for
the heights. He writes that he is trying to create a system
of ethics derived from fact and reason, that largely throws
off the perspectives of religion, place, family, tribe,
community and maybe even species -- to ''take the point of
view of the universe.'' His is a grand, heroic undertaking.


But like the protagonist in a classical drama, Singer has
his flaw. It is his unexamined assumption that disabled
people are inherently ''worse off,'' that we ''suffer,''
that we have lesser ''prospects of a happy life.'' Because
of this all-too-common prejudice, and his rare courage in
taking it to its logical conclusion, catastrophe looms.
Here in the midpoint of the play, I can't look at him
without fellow-feeling.

I am regularly confronted by people who tell me that Singer
doesn't deserve my human sympathy. I should make him an
object of implacable wrath, to be cut off, silenced,
destroyed absolutely. And I find myself lacking a logical
argument to the contrary.

I am talking to my sister Beth on the phone. ''You kind of
like the monster, don't you?'' she says.

I find myself unable to evade, certainly unwilling to lie.
''Yeah, in a way. And he's not exactly a monster.''

''You know, Harriet, there were some very pleasant Nazis.
They say the SS guards went home and played on the floor
with their children every night.''

She can tell that I'm chastened; she changes the topic,
lets me off the hook. Her harshness has come as a surprise.
She isn't inclined to moralizing; in our family, I'm the
one who sets people straight.

When I put the phone down, my argumentative nature feels
frustrated. In my mind, I replay the conversation, but this
time defend my position.

''He's not exactly a monster. He just has some strange ways
of looking at things.''

''He's advocating genocide.''

''That's the thing. In his mind, he isn't. He's only giving
parents a choice. He thinks the humans he is talking about
aren't people, aren't 'persons.'''

''But that's the way it always works, isn't it? They're
always animals or vermin or chattel goods. Objects, not
persons. He's repackaging some old ideas. Making them
acceptable.''

''I think his ideas are new, in a way. It's not
old-fashioned hate. It's a twisted, misinformed, warped
kind of beneficence. His motive is to do good.''

''What do you care about motives?'' she asks. ''Doesn't
this beneficent killing make disabled brothers and sisters
just as dead?''

''But he isn't killing anyone. It's just talk.''

''Just
talk? It's talk with an agenda, talk aimed at forming
policy. Talk that's getting a receptive audience. You of
all people know the power of that kind of talk.''

''Well, sure, but--''

''If talk didn't matter, would you
make it your life's work?''

''But,'' I say, ''his talk won't matter in the end. He
won't succeed in reinventing morality. He stirs the pot,
brings things out into the open. But ultimately we'll make
a world that's fit to live in, a society that has room for
all its flawed creatures. History will remember Singer as a
curious example of the bizarre things that can happen when
paradigms collide.''

''What if you're wrong? What if he convinces people that
there's no morally significant difference between a fetus
and a newborn, and just as disabled fetuses are routinely
aborted now, so disabled babies are routinely killed? Might
some future generation take it further than Singer wants to
go? Might some say there's no morally significant line
between a newborn and a 3-year-old?''

''Sure. Singer concedes that a bright line cannot be drawn.
But he doesn't propose killing anyone who prefers to
live.''

''That overarching respect for the individual's preference
for life -might some say it's a fiction, a fetish, a
quasi-religious belief?''

''Yes,'' I say. ''That's pretty close to what I think. As
an atheist, I think all preferences are moot once you kill
someone. The injury is entirely to the surviving
community.''

''So what if that view wins out, but you can't break
disability prejudice? What if you wind up in a world where
the disabled person's 'irrational' preference to live must
yield to society's 'rational' interest in reducing the
incidence of disability? Doesn't horror kick in somewhere?
Maybe as you watch the door close behind whoever has
wheeled you into the gas chamber?''

''That's not going to happen.''

''Do you have empirical
evidence?'' she asks. ''A logical argument?''

''Of course not. And I know it's happened before, in what
was considered the most progressive medical community in
the world. But it won't happen. I have to believe that.''

Belief. Is that what it comes down to? Am I a person of
faith after all? Or am I clinging to foolish hope that the
tragic protagonist, this one time, will shift course before
it's too late?

I don't think so. It's less about belief, less about hope,
than about a practical need for definitions I can live
with.

If I define Singer's kind of disability prejudice as an
ultimate evil, and him as a monster, then I must so define
all who believe disabled lives are inherently worse off or
that a life without a certain kind of consciousness lacks
value. That definition would make monsters of many of the
people with whom I move on the sidewalks, do business,
break bread, swap stories and share the grunt work of local
politics. It would reach some of my family and most of my
nondisabled friends, people who show me personal kindness
and who sometimes manage to love me through their
ignorance. I can't live with a definition of ultimate evil
that encompasses all of them. I can't refuse the
monster-majority basic respect and human sympathy. It's not
in my heart to deny every single one of them,
categorically, my affection and my love.

The peculiar drama of my life has placed me in a world that
by and large thinks it would be better if people like me
did not exist. My fight has been for accommodation, the
world to me and me to the world.

As a disability pariah, I must struggle for a place, for
kinship, for community, for connection. Because I am still
seeking acceptance of my humanity, Singer's call to get
past species seems a luxury way beyond my reach. My goal
isn't to shed the perspective that comes from my particular
experience, but to give voice to it. I want to be engaged
in the tribal fury that rages when opposing perspectives
are let loose.

As a shield from the terrible purity of Singer's vision,
I'll look to the corruption that comes from
interconnectedness. To justify my hopes that Singer's
theoretical world -- and its entirely logical extensions --
won't become real, I'll invoke the muck and mess and
undeniable reality of disabled lives well lived. That's the
best I can do.




Harriet McBryde Johnson is a lawyer in solo practice in
Charleston, S.C. She has been a disability rights activist
and advocate for more than 25 years.

http://www.nytimes.com/2003/02/16/magazine/16DISABLED.html?ex=1046355572&ei=1&en=5632edc7f8850e23