Re: Kimi

[Guest guest]

I'm 24, type 2 and have a g-tube. I find I need to keep my gtube to one side

or it hurts. Don't ask me why! I have used a Tolerex (but another brand) for

about a year now.

[Guest guest]

Hi Kimi,

I'm catching up with my e-mail...Wow this is an active list! I really

enjoyed your website. It looks like you're really out there doing

it! What do you plan to do with the bio-ethics degree? Here's a great

article about eugenics and disability. It's long, but worth the read.

Alana

Subject: NY Times article on Singer

http://www.nytimes.com/2003/02/16/magazine/16DISABLED.html?pagewanted=print & posi\

tion=top

February 16, 2003

Unspeakable Conversations

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. 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 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 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, ton, 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 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 ton, 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 tonians who

have listened with polite interest, when in decency they should have run

him out of town on a rail.

My encounter with 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 .

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.

Iask 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

ton, 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 ; it must be Ms. and Mr. Singer.

He seems genuinely nettled. Shouldn't it be Ms. and Professor

Singer, if I want to be formal? To counter, I invoke the ceremonial

low-country usage, Attorney 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 ton.

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 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 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.

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 , 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 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 , So that you will

have a better answer to questions about animals. And thanks for coming to

Princeton. Singer. March 25, 2002.'' She responds that she is

changing her will, too. I'll get the autographed photo of Jerry 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 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 is a lawyer in solo practice in ton, S.C.

She has been a disability rights activist and advocate for more than 25 years

[Guest guest]

Thanks for letting us know, . I've been thinking about her a lot

today. I'm sorry about the pain, and hope it subsides quickly. Peace to

you. I know it's difficult to see the people we love be in pain.

Alana

At 04:28 AM 2/24/04 +0000, you wrote:

>Just wanted to let you all know Kimi went into the hospital this

>morning. For those of you who do not know, she got a pacemaker. The

>surgery went fine, but she is now in a lot of pain. Please keep her

>in your thoughts.

>