Hi folks! This week’s newsletter is an excerpt from my translation of Alice Wong’s new anthology, Disability Visibility. Specifically, it is a translation of Harriet McBryde Johnson’s seminal essay, “Unspeakable Conversations.” It is probably the piece I am proudest of in the anthology, and a good way to get a sense of what my plain language translations look like. You can read more here for free. Definitely buy Alice’s book if you have the means. It is very worth it.
Professor Peter Singer says he doesn't want to kill me. He just thinks it would have been better if my parents could have killed me when I was a baby. He wants to let other parents kill their disabled babies, if they want to. He thinks that having a disability is always worse than not having a disability. Peter Singer thinks that parents like babies that are not disabled more.
It has nothing to do with me. I should not feel scared.
Whenever I try to think about Peter Singer’s tricky argument, I get dizzy. It's . . . almost fun. Mercy! It's like ''Alice in Wonderland.''
It is a cold day. I am at Princeton University. I am visiting Peter Singer. Some people call Peter Singer the most important philosopher in the world.
Philosophy is a way to study people and the world, by thinking about and asking questions. Philosophers help people figure out hard problems in their lives. Philosophers like Peter Singer think about what is right and what is wrong.
Peter Singer is the man who wants me dead. No, that’s not fair. He wants to let parents kill disabled babies. I am disabled. Those babies could be like me when they grow up.
Peter Singer also says it should always be OK to kill disabled people with severe intellectual disabilities. Peter does not think that people with severe intellectual disabilities are people.
What does Peter Singer say a person is? If you are a person, you know you exist. If you are a person, you can like some choices more than other choices. If you are a person, you can want one choice about the future more than another. If you are a person, you can want to be alive.
Peter Singer says I am a person. He says when I was a baby, I was not a person. Peter Singer does not think any babies are people. Babies do not know they exist.
When some people get old, they get dementia. Dementia is a disability. When people have dementia, they lose skills they had before. People with dementia forget how to do many things. Some people with dementia forget how to eat. Some people with dementia forget how to walk.
Peter Singer thinks people with dementia are not people. Peter Singer thinks if I get dementia, I will stop being a person. Then, my family or doctors could kill me, if they want to.
I agreed to debate Peter Singer twice.
A debate is an argument in front of other people. In a debate, people explain why they think they are right or wrong. Sometimes, the point of a debate is to get people to agree with you. Sometimes, the point of a debate is to help other people understand what you think.
The first time I debated Peter Singer, I explained, to 150 university students, why it is wrong to kill disabled babies.
Later that day, I had dinner with Peter Singer and some of his friends. We debated assisted suicide.
Assisted suicide is when someone wants to die, and a doctor helps that person die.
I am the only person with a disability in the room. I am the only person who thinks killing people with disabilities is wrong.
I agreed to debate Peter Singer for many reasons. Here are some of those reasons:
I am a disability rights activist. I want people to know about disability rights.
I want other people to understand what I think.
I want to learn how to debate people who do not agree with me at all.
A debate with Peter Singer is an interesting story. It is the story I am telling you right now.
I did not think I could change Peter Singer’s mind about people with disabilities. But maybe I could change some students’ minds about people with disabilities.
I have told this story to my family and friends. I have told this story to people I work with.
I have told this story at lunch and at dinner. I have told this story on long car trips. I have written many emails about this story.
I have given many speeches about this story.
The story still doesn’t make sense. People ask me a lot of questions about the story. Here are some of the questions and answers:
Question 1: Was Peter Singer totally grossed out by how you look?
Answer: Peter Singer did not seem grossed out by how I look.
Question 2: How did Peter Singer treat you?
Answer: Peter Singer treated me with respect. He treated me like he would treat anyone else.
Question 3: Was it hard to debate about whether you should be alive?
Answer: It was very hard. It was also too easy.
Question 4: Did Peter Singer become a famous philosopher because people like his ideas about killing disabled babies?
Answer: Peter Singer’s ideas about killing disabled babies did not hurt him. But Peter Singer is most famous for animal rights. He wrote a book called “Animal Liberation.” Liberation is a word that means “to set free.” Peter Singer wants animals to live and be free.
Question 5: How can Peter Singer care more about animals than disabled people?
Answer: I do not like this question. I used to say, “I don’t know. It doesn’t make sense to me.” After reading Peter Singer’s writing, it does make sense. It makes sense if you think about the world like Peter Singer does. But I don’t want to think about the world like Peter Singer does.
I need to tell you more about question 1.
I am not ugly. But most people do not know how to look at me. I confuse people. People stare at my power wheelchair. I have a disability that has made me very thin. People stare at my body.
When I was a child, my muscles got too weak to hold up my spine. I tried wearing a back brace. I was lucky that a doctor said I should not have surgery. I did not like the back brace. When I was 15, I got rid of the back brace. My spine is shaped like the letter “S.” I like that my spine is shaped differently. It feels natural. I like how I look.
I am 44 years old. People with disabilities did not used to live as long as I have. There are better medicines and doctors now.
Sometimes, people think I am beautiful. At a lesbian barbecue I went to, some of the women thought I was beautiful.
I live in Charleston, South Carolina. Some people in Charleston call me Good Luck Lady. They think it is good luck to see me when there is going to be a big storm. They kiss my head before it is time to vote.
Most people are not nice to me, even though they think they are being nice. They do not think my life can be a good life, because I am disabled.
People say to me:
It is good you are outside. Most people would give up.
God bless you! I’ll pray for you.
If I had to live like you, I’d kill myself.
I used to tell people that I love being alive. It feels good to go fast in my power wheelchair. I do not want to die. But it is annoying to explain over and over again. God didn’t make me so I could teach people about disability.
I do not believe God is real. I do not believe God made anyone to teach anybody about anything.
People think they know everything about me, because of my disability. It is not true. They don’t know about me. They are confused.
When I first met Peter Singer, he did not look confused. He treated me like a person right away. I did not expect that.
In 2001, Peter Singer was invited to speak at the College of Charleston. The College of Charleston is a university two blocks from my house. His lecture is called, “Rethinking Life and Death.”
Not Dead Yet sent me to Peter Singer’s speech. Not Dead Yet is a group that is against killing people with disabilities. Not Dead Yet told me to give out a leaflet and to talk about disability rights.
I went to the College of Charleston an hour early. It was very peaceful.
I roll around the corner of the building. Two people I know are sitting on a bench with Peter Singer. Their names are Sharon and Herb. They are eating veggie pitas together. Sharon is a human rights activist. Herb is the most famous atheist in South Carolina. An atheist is someone who does not believe God exists.
I thought Sharon and Herb were nice people. But they were sitting and eating with a man who thinks it is good to kill people with disabilities. I did not want to talk to them. I try to leave before they see me. They see me. Sharon throws out her trash and comes over. After we say hello, she asks, “Would you like to meet Professor Singer?”
Sharon doesn’t know Peter Singer wants to kill people with disabilities. She must like his book about animal rights.
I tell Sharon, “I’ll just talk to him in the Q and A.”.
But Herb and Peter Singer are walking towards me. They are looking at me.
Herb is talking. Herb is probably saying nice things about me. Herb is probably telling Peter Singer that I’m a disability rights lawyer. Herb is probably saying I gave a talk against assisted suicide. Herb is probably saying that he didn’t agree with everything I said, but that I am very smart.
Peter Singer looks interested in what Herb is saying. I sit where I’m parked.
I hang back. I shouldn't shake hands with the Evil One. But Peter Singer is Herb's guest, and I simply can't snub Herb's guest at the college where Herb teaches. Where I live, there is a rule: If you're not prepared to shoot someone with a gun, you have 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 is a little scared. Not Dead Yet protested at Princeton University, because Princeton University gave Peter Singer a job. I gave money to help my friends who were arrested at the protest. Some of them use power wheelchairs.
But if Peter Singer is scared, he does not show it. He answers my questions about his speech. Peter Singer says he wants to talk to me later. He looks like he means it.
During his speech, Peter Singer talks about why people should be allowed to kill disabled babies. He thinks non-disabled babies are happier. He thinks if people were allowed to kill disabled babies, everyone would be happier.
I get the microphone and ask to speak. I want to talk about killing disabled babies. I am a lawyer. I understand the law. I think that Peter Singer’s argument is not enough to change the law. I am not religious. I think Peter Singer is wrong to say people who disagree with him are religious.
Peter Singer writes down notes while I talk. He wants to debate with me.
I get to the most important part: Disability does not mean someone is going to have a bad life.
Babies are not all the same. People are not all the same. My brother does not have a disability. We are both good at some things and bad at others. It does not make sense to say my brother is better or worse than I am.
Peter Singer talks to me in a polite voice. We debate for 10 minutes. He sounds very respectful and focused. When he is done, I’m not exactly angry with him. I am still very angry. But I am angry at the 200 other people in the room. They sat and listened. They should have kicked Peter Singer out of town.
In December, I decided to send Peter Singer a Christmas card. He sent me back a very nice email. Dear Harriet (if he may)... He is just back from Australia. Peter Singer is from Australia. He agrees with me about the world. He supports my work. He says people with disabilities should live in the community. Then, Peter Singer asks some questions about killing disabled babies.
I reply. Fine, call me Harriet. I answer his questions about killing disabled babies. I ask some questions back. We send emails back and forth for weeks about baby killing. Dear Harriet. Dear Peter.
Peter Singer does not believe in God. I do not believe in God. Peter Singer wants to know why I think killing disabled babies is wrong. I want to know why he thinks it is OK to kill disabled babies, but not OK to kill all babies. Peter Singer says that parents like babies without disabilities more.
I ask Peter Singer about a different kind of baby. I ask about mixed-race babies. Does he think it should be legal to kill mixed-race babies? Singer agrees there is a problem. ''It would be horrible to kill mixed-race babies,” he says.
What's the difference? He says it does not make sense to like one skin color more than another. He says it does make sense to like non-disabled babies more than disabled babies. Why? To Singer, it's pretty simple: disability makes a person ''worse off.''
Are we ''worse off''? I don't think so. Some people are born with disabilities. Some people become disabled later. Disability shapes who we are. We make our lives good. We love the same things other people love. We love secret things that are only for people with disabilities. We have something the world needs.
Peter Singer wants me to say disabled lives are less happy.
Peter Singer gives an example: Think of a disabled child on the beach. The child is watching the other children play.
I say, ''As a little girl playing on the beach, I knew some people felt sorry for me. It annoys me. It still does.''
I had fun playing on the beach. I did not need to stand, walk, or run. I've had enough. I tell Peter Singer that the conversation is over.
Peter Singer invites me to come to Princeton. Peter Singer teaches at Princeton I tell him maybe.
Of course I'm flattered. Mama will be impressed.
I have to think. Not Dead Yet says we should not treat Peter Singer like his opinions matter. Disabled lives should not be argued about. I think Not Dead Yet is right.
But I'm stuck. If I say no, Singer can say disabled people don’t want to be taken seriously. It's an old trick. I fell for it.
Peter Singer invites me to debate him. He wants me to debate me in front of his students. He also wants to debate me in front of everyone at Princeton University. That is a lot of people.
It sounds like Peter Singer wants to debate whether I should be alive.
I tell Peter Singer what I want: I will talk to his class about baby killing. Then I will let him ask me as many questions as he wants.
Later, I will debate a different disability idea. It will be in front of people who are not all on Peter Singer’s side. Peter Singer says a group of students and teachers might be good.
We agree on how to debate.
I tell some of my friends in the disability community that I am going to debate Peter Singer. I agree with my friends who say to debate Peter Singer, then leave right after the debate is over.
Peter Singer’s assistant helps me make plans to go to Princeton. But Peter Singer still asks me a lot of questions. The questions are about my life.
There is only one wheelchair-accessible hotel room near Princeton. It is very expensive.
I say I can stay in a room that is not accessible, if it has some things I need.
Peter Singer asks me more questions: Do I need a van with a wheelchair lift? Can my assistant put me in a regular car? How wide is my wheelchair?
After we are done, Peter Singer knows a lot of personal things about me. Here are some of those things:
He knows how wide my wheelchair is.
He knows I can’t steer my wheelchair if my hands get cold.
He knows I am scared of big hills.
He knows I cannot use stairs at all. I can’t even go up one step.
He knows I can only eat soft foods.
He knows I use a bedpan. I do not use a toilet.
None of these things are secret. I am not embarrassed about my life. I am not embarrassed about anything I do. But I am worried Peter Singer is taking notes. I am worried Peter Singer will use personal things to show how “bad off” people with disabilities are.
Other people with disabilities got mad at me when I said I shook Peter Singer’s hand. Some people are angry that I am debating Peter Singer at all.
We need to agree on one more thing before the debate: How to act. Will we be polite? Will we be rude? What are the rules?
I have to be polite to Peter Singer. It will not help me or other people with disabilities if I am rude. But I do not want to be nice to Peter Singer. I tell Peter Singer that he must call me “Ms. Johnson.” I tell Peter Singer I will call him “Mr. Singer.”
Peter Singer does not like my idea, but he agrees.
I tell another lawyer in my office about the debate. He shakes his head.
“That poor, sorry son of a bitch! He has no idea what he’s in for.”
When I go to Princeton, I take an airplane. A lot of things go wrong. The people who work on the airplane broke my wheelchair. They break a lot of people’s wheelchairs.
I get very angry. I tell them they have to fix my wheelchair right away.
I can’t find a safe place to use my bedpan. It is OK. I didn’t drink water today. I will not need to use my bedpan.
My assistant is named Carmen. Carmen travels with me. She is a little scared. This is the first time Carmen has gone on an airplane with someone in a power wheelchair. I did not warn her enough. I did not tell her all of the things that could go wrong.
We get to the hotel. We are four hours late. I go to sleep. In the morning, I feel tired. I am happy my broken wheelchair is fixed. I still feel cranky. I do not like sleeping in hotels.
I stretch. Carmen helps me do my stretches. I tell her how. Then, I eat breakfast. I have tea and oatmeal. I use the bedpan. Carmen helps me shower. She helps me get dressed. She puts me in my power wheelchair. I feel good in my power wheelchair. I like that I can move in my power wheelchair without Carmen’s help.
I drive to the mirror. I braid my hair. Carmen helps a little. I put on a scarf. Carmen keeps moving the scarf. I tell her that it’s fine, and she stops.
I tell Carmen what she needs to do today. Here are some of the things Carmen needs to do:
Carmen must be able to see and hear me all the time.
Carmen must help me when I want.
Carmen must leave me alone if I want.
Carmen must be polite to me.
Carmen must not answer questions people ask her about me.
I am happy Carmen is with me. She’s good at her job.
We walk from the hotel to Princeton University. The hotel is very close. Our walk is short. It is cold outside. I do not like being cold.
To get to Peter Singer’s classroom, we need to take an elevator. The elevator is also used as the janitor’s closet. There is a cart with a big trash can, mops, and brooms in the elevator. It does not look like there are a lot of other people who use wheelchairs at Princeton.
I get to Peter Singer’s classroom. Students begin to come in. They sit above me in a circle. I feel like an animal at the zoo.
I think about leaving. But Peter Singer pays me for debating him. I have to do my job.
I talk to the students about what is right and what is wrong. I talk to the students about beauty and love. I do not think Peter Singer talks about beauty and love. I talk to the students that people with disabilities lead good lives. I talk to the students about the bad ways people with disabilities get treated.
I talk for a little longer than I should. Then, I let Peter Singer ask me questions.
Peter Singer is very polite. He uses a lot of big words.
The students are also very polite. They use a lot of big words. I answer their questions.
A student asks me if I eat meat.
“Yes, I do,” I answer.
“Then how are you OK with--”
I interrupt the student. “I don’t know about animal rights.”
The next student talks about comparing disability and race. Peter Singer joins in and calls me a little bit racist. I do not disagree. I am not perfect. I am a little bit racist, but I work hard on doing better.
A student asks, “what if someone is unconscious forever? Keeping them alive is weird.” “Unconscious” means that the person does not talk to other people or things ever. It is like the person is asleep all the time.
I do not think keeping someone alive is weird. I think keeping someone alive is beautiful.
The student continues talking. “What about the caregiver? Caregivers are often women. Women have to do a lot of extra work. It’s not fair to women.”
I agree that it is not fair. I think we should pay workers to support people with disabilities. No one should be forced to do anything.
The students finish asking me questions. Peter Singer asks, “do you want to go for a walk?” I say yes. I will go for a walk with Peter Singer.
Peter Singer does not know where the elevator is. He is used to taking the stairs. Carmen shows Peter Singer where the elevator is. Carmen is my assistant.
Peter Singer asks what I thought about the students’ questions.
“They were fine. The question about meat surprised me,” I say.
Peter Singer apologizes. He explains what he thinks the student meant: “Why do you care about people but not animals?”
I say, “why do you care about animals but not people?”
I do not want to debate about the lives of people with disabilities anymore. I tell Peter Singer that.
Peter Singer changes what we are talking about. He tells me about the buildings at Princeton University. We stop walking.
Peter Singer points to a place near us. “That is where your friends in Not Dead Yet protested and yelled at me,” he says. I think my friends were right to yell at Peter Singer.
We finish walking. A van picks me up and takes me to my hotel. I eat lunch and take a nap.
Later, a van takes me and Carmen to dinner. The van drops us off. Peter Singer is there.
“I hope you had a good afternoon,” Peter Singer says.
I did have a good afternoon. We talk about disability rights and other things. It is easy to talk to Peter Singer. He is nice to spend time with. Too bad he sees disabled lives as mistakes.
I am looking forward to dinner. I’m hungry. We are going to talk about assisted suicide. Assisted suicide is when a doctor helps a person with a disability die. The disabled person wants to die.
It is easier to talk about assisted suicide than about killing disabled babies. I understand why people disagree about it. I understand why some people want assisted suicide. I think those people are wrong, but I understand them.
We sit down at dinner. There are other people sitting at the table. I talk for five minutes about why I think assisted suicide is wrong.
David Batavia is sitting at the dinner table. He talks about choices. He says disabled people should be able to make any choice they want. That means disabled should be able to choose death.
Carol Gill is sitting at the dinner table. She talks about how most people think disabled lives are bad. She thinks most people are wrong. Carol thinks people with disabilities should be treated the same as everyone else.
I agree with Carol Gill. I think choosing to die is not a real choice. People with disabilities will feel pushed to die, because other people have wrong ideas about disability.
People with disabilities get treated badly a lot. It is hard to need help doing things. But it does not have to be that way. People with disabilities could be treated better. Dying does not fix the real problem.
Other people at the table use a lot of big words. What they say does not make sense.
A man asks, “what if we pretend everyone is nice to people with disabilities? Would you still be against assisted suicide?”
“Why would we do that?” I reply. It does not make sense to pretend real life does not exist.
Dinner is over. I only ate a little bit. I ask Carmen to put my food in a box for later. Peter Singer comes back with a box and puts food in it for me.
I go home. I go back to South Carolina, where I live. Everyone wants to hear the story about my debate with Peter Singer.
Some of my friends with disabilities think I should not have been polite to Peter Singer during the debate.
My friend Laura has a disability. She does not like that I debated Peter Singer. She does not like that Peter Singer helped me eat dinner. She does not like that I treated him like a person.
It is hard to explain. Peter Singer is a person.
Laura and I talk about good and evil. We talk about the best way to advocate for disability rights. We talk about the best way to make disabled life better.
I keep working. I try to make disabled lives better. I help make a law that will keep disabled people safe. It is good to do this kind of work. But Peter Singer keeps talking to me. I ask myself a hard question: Why don’t I yell at Peter Singer?
Here is the answer: I feel bad for Peter Singer. I think he is very smart. He is very good at writing. He is very good at debating.
But Peter Singer misses something important. He thinks disabled lives are bad. Peter Singer is wrong about people with disabilities. A lot of people are wrong about people with disabilities. I feel bad for Peter Singer because he is wrong.
Peter Singer does not understand that killing disabled is killing disabled people. He thinks it is just parents choosing what they want. He does not think we are people.
A lot of people with disabilities think I should yell at Peter Singer. I am not sure that is a good idea.
I go talk to my sister. Her name is Beth. She gives good advice.
Beth calls Peter Singer a monster.
“You kind of like the monster, don’t you?” she says to me.
I am uncomfortable.
“I do like Peter Singer a little bit. He’s not exactly a monster,” I say to Beth.
“Some Nazis were very nice to talk to. After killing people all day, they went home. They played with their children every night.”
I realize I am wrong.
Peter Singer does not know he is a monster. He does not think killing people is killing people. He thinks people with disabilities are not people, so killing us is OK. He thinks he is doing the right thing.
Right now, it is not OK to kill people with disabilities. If someone tries to kill a person with a disability, they will go to jail. But what if Peter Singer’s ideas change the rules? Peter Singer is very important. A lot of people listen to his ideas.
I hope that his ideas will not matter. I hope his ideas will not change the rules. But is that enough? I don’t know.
I need to believe most people are good. I need to talk about how people with disabilities have good lives. It’s the best I can do.
And now, the news…
Why did the police inject Elijah McClain with ketamine while arresting him? Forcibly drugging people who are exhibiting “extreme agitation” is legal in Colorado.
Dr. Jackie Spinner, a parent, shares her biggest fear: That her disabled son could be murdered by police, like Elijah McClain was.
We don’t track numbers on civil commitment, and it’s a problem.
Oklahoma voters have approved Medicaid expansion.
Maybe under-funding public health was a bad idea!
This is one of the best pieces on neurodiversity I’ve seen in a long while.
Dr. James Cusack is going to be the next CEO of UK nonprofit Autistica. This might be the first time an organization that funds autism research has actually been headed up by an autistic person?
Autistic video game journalist Laura K. Dale is putting together an anthology about joy.
Is it OK to pay direct support professionals and nursing home staff $13 an hour? No. It is not.
Rep. Ayanna Pressley says trains rights.
Ending on a positive note…
Talia Lavin, the host of Moby Dick Energy, watched Star Trek: The Next Generation for the first time recently. It’s always a joy to see new people connect with something that’s such a big part of my childhood, and Talia’s Star Trek tweets have been hilarious and insightful. She wrote a piece for the official Star Trek website that is an absolute delight. Definitely check it out.