Top Quotes: “Disability Visibility: First-Person Stories from the Twenty-first Century” — Alice Wong

The Debate

“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 Professor 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.”

“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.”

Fix Me

“I grew up having every flaw pointed out to me. I grew up believing I was wrong. It’s part of the territory that comes with being born with a facial disfigurement as a result of Crouzon syndrome a rare genetic disorder where the bones in the head do not grow normally. My eyes were too far apart, too crooked; my nose was too big. My jaw was too far back; my ears were too low. There were regular appointments with doctors and surgeons trying to fix me and my twin sister, who was also born with Crouzon syndrome. Some of these were for medical purposes, others for aesthetics.

I would sit in a room while doctors took pictures of my face from every angle. They would pinch and poke, circling my flaws. I would sit and let them pick apart my every flaw. And I wanted it, I did.

“Fix me.” I would beg.

They would do their best.

I’d have surgery, recover, and return for more pictures, more circling and more detailing of every flaw. I was obsessed with symmetry, obsessed with bridging the gap between the person I was and the person I felt I should be.”

“They broke my bones and shifted everything forward — necessary to rectify the premature fusion of my skull. They took bone from my hips and put it in my face. I had to learn how to walk again.”

Native Healthcare

“The only healthcare available to Native people living on reservations is provided by the Indian Health Service (IHS), an operating division within the U.S. Department of Health and Human Services that’s consistently rated as the worst healthcare provider in America. IHS is also grossly underfunded: in 2016, Congress allotted $4.8 billion for IS, which came out to approximately $1,297 per person. For comparison, each inmate in the federal prison system receives an average of about $6,973 in healthcare each year. There also aren’t enough healthcare clinics or hospitals to serve reservations and tribal villages, which forces many people to travel hundreds of miles for specialized care or to simply go without.

Reproductive healthcare is virtually unavailable for IHS patients because the federal program adheres to the Hyde Amendment, which bars federal funds from being used for abortions except in cases of rape, incest, and saving a pregnant person’s life. Approximately 84 percent of Native women are abused in our lifetimes. More than 50 percent of us have been raped at least once On some reservations, Native women are murdered at ten times the national homicide rate. Despite this, it’s nearly impossible to access an abortion or healthcare after a sexual assault. Rape kits are very rarely collected at IHS facilities because there are almost no sexual assault nurse examiners on staff.”

Deaf in Prison

“Every other class — the basic computer class, vocational training, a reentry program — I would get there, they would realize I was deaf, and they would kick me out. It felt like every time I asked for a service, they were like, “Fuck you, no, you can’t have that.” I was just asking for basic needs; I didn’t have a way to communicate. And they basically just flipped me the bird.

While I was in prison they had no American Sign Language (ASL) interpreters. None of the staff knew sign language, not the doctors or the nurses, the mental health department, the administration, the chaplain, the mailroom. Nobody. In the barbershop, in the chow hall, I couldn’t communicate with the other inmates.

When I was assaulted, I couldn’t use the phone to call the Prison Rape Elimination Act (a federal law meant to prevent sexual assault in prison) hotline to report what happened. And when they finally sent an interviewer, there was no interpreter. Pretty much everywhere I went, there was no access to ASL. Really, it was deprivation.

I met several other deaf people while I was incarcerated. But we were all in separate dorms. I would have liked to meet with them and sign and catch up. But I was isolated. They housed us sometimes with blind folks, which for me made communication impossible. They couldn’t see my signs or gestures, and I couldn’t hear them. They finally celled me with another deaf inmate for about a year. It was pretty great, to be able to communicate with someone. But then he got released and they put me with another blind person.

When I met with the prison doctor, I explained that I needed a sign language interpreter during the appointment. They told me no, we’d have to write back and forth. The doctor asked me to read his lips. But when I encounter a new person, I can’t really read their lips.”

“Once they brought me to disciplinary court, but they had me in shackles behind my back, so I had no way to communicate. Two of the corrections officers in the room were speaking to me. All I saw were lips moving. I saw laughter. One of the guards was actually a pretty nice guy, one of the ones who were willing to write things down for us deaf folks. He tried to get them to take the cuffs off me. He wrote, Guilty or not guilty? But the others would not uncuff me. I wanted to write not guilty. I wanted to ask for an interpreter. But I couldn’t. They said, *Okay, you have nothing to say? Guilty.” That infuriated me. I started to scream. That was really all that I could do. They sent me to the hole, and I cried end lessly. It’s hard to describe the fury and anger.

Prison is a dangerous place for everyone, but that’s especially true for deaf folks.”

“Jeremy Woody was released from Central State Prison in Georgia in August 2017, after serving four years for a probation violation. He now lives near Atlanta. He is currently suing Georgia corrections officials over his treatment in prison, with the help of the American Civil Liberties Union’s Disability Rights Program and the ACLU of Georgia. Woody spoke to the Marshall Project through an American Sign Language interpreter. The Georgia Department of Corrections did not respond to a request for comment concerning allegations in this interview.”

Prosthetics

“I’m told by the technicians to maintain an average amount of walking on a daily basis. Don’t go overboard, but don’t be lazy, either. Stay in the middle. The insurance company could pull my data and decide whether I have used my leg enough to justify the next one.”

“Binders — garments used to flatten the chest, often worn by transmasculine and nonbinary folx — have until recently been available only in black, white, or “nude” (a racist beige that looks like a Band-Aid). These binders resemble medical devices, reflecting our culture’s long history of pathologizing gender-variant people. (It wasn’t until 2013 that the American Psychiatric Association removed gender identity disorder (GID) from the pages of the Diagnostic and Statistical Manual of Mental Disorders (DSM). The current DSM-5 has replaced GID with gender dysphoria, which erases the fact that not all trans people are dysphoric.) However, even now, with newer options becoming available, binders are still designed for pure utility and with the intention of being hidden.

Likewise, most clothing made for disabled people caters to senior citizens, such as the brand Buck & Buck. The styling isn’t active-oriented, assuming that the wearer won’t be moving around much independently, and the garments look like hospital gowns or scrubs. This assumes not only that clothing for disabled people and clothing for older folx are synonymous, but also that all disabled people aren’t capable of being active through sports, swimming, and dancing or of generally being someone who can boogie. Older people with disabilities and chronic pain need fun active options as well, as society holds a very one-dimensional view of people who are old or disabled. The brands that do make items for children and teenagers simply offer shrunk-down versions of senior clothing. Even if you are sick, wearing clothing that makes you look sicker is dehumanizing.”

The Guide Dog

“Guide Dogs Don’t Lead Blind People. We Wander as One.”

Disability Visibility in Asia

“On the same continent and yet a world away from Vietnam, a man named Deng Pufang began the push for the social equality of disabled people in China at the peak of 1968’s Cultural Revolution. It’s still unclear whether he jumped from a window of a fourth-floor building at Beijing University or was pushed by members of Mao Zedong’s Red Guard, but the result was the same: Pufang was paralyzed from the waist down. As the first son of Deng Xiaoping, a political opponent of Mao who would later lead the People’s Republic of China, Pufang’s status allowed him to use his own disability to spotlight the discrimination and oppression of his fellow disabled citizens. Pufang created the China Welfare Fund for the Handicapped and chaired the China Disabled Persons’ Federation. Both platforms initiated a humanist approach toward educational and employment opportunities among others for a lucky fraction of the country’s disabled population.”

“It wasn’t until the 1990s, for instance, that the Chinese characters used to refer to people with disabilities changed from canfei (useless) to canji (sickness or illness); the push to understand disability as a social construct has been under way for less than a decade. Media professionals in China are now encouraged by the Chinese disability advocacy organization One Plus One to use the characters cán zhäng (disabled and obstructed) when reporting on disability issues. But such language remains a suggestion rather than an expectation, and its impact has yet to filter out to the public.”

“In 2016, a Japanese man who was outspoken in his belief that all people with disabilities should be euthanized massacred nineteen disabled people and injured twenty-six at an institution in Sagamihara, Japan. Four years later, the victims still haven’t been publicly named — reportedly out of respect for their families, who wished to avoid the stigma that comes with having disabled family members.”

Parenting

“He is a particularly enthusiastic toddler, his body acting out every passing emotion. Once he’s bucking around, my husband David, has to intervene — I’m too fragile to manage thirty-one pounds of pure kinetic energy.

I wasn’t there for Khalil’s breakfast; I was so dizzy and fatigued. I didn’t help with lotion or pick out his little clothes. I won’t drop him off or pick him up at preschool today; I can’t drive and often am so sick in the morning that I cannot leave the apartment. It’s because I miss these little moments that I sometimes feel like I’m only pretending to be a mom. My disability limits me in performing the mundane physical acts of caregiving that I associate with “real” parenting.

Internalized ableism — the insidious belief that I would be a better person if I were not disabled — makes me feel like an imposter as a mother. Many of my friends with disabilities worry that they should not be parents; those who already are parents fear that their physical capacities negatively affect their children. It’s much easier to ignore my insecurities in professional or academic settings — to fake it until I make it, to go through the motions until I’m more confident in them. But how can I brazen my way through parenting? Talking myself out of my deepest fears is more difficult when I want, so primally, to be able to lift my son.”

“He started day care at nine months, when David returned to work. I still attended most drop-offs and pickups and helped him get ready for his day. But when he reached fourteen months his mobility surpassed my endurance and I could no longer be alone with him for longer than a couple of hours. He is strong and fast. I am not powerful enough to protect him from running or clambering into harm’s way. When we adopted him, at eighteen months, our time alone was down to one hour.”

Prenatal Screening

“Prenatal screening is a tough conversation to have in the disability community. For some people with degenerative conditions, the knowledge of their lived experience may lead to them being staunchly pro-choice. Others of us, like the deaf and dwarfism communities, often see our disability as less a diagnosis and more a culture. We celebrate the birth of future generations regardless of any health-related side effects.

When prenatal screenings were introduced in Iceland, the number of births of people with Down syndrome plummeted. Imagine knowing your community was small, but then all of a sudden it was just gone and not coming back; some people think that’s a good thing. This is why the Down syndrome community and their families are largely “pro-life” — and that needs to be respected by pro-choice activists who erase those experiences from public conversations on the issue.

It is hard to be a pro-choice disabled person who understands that believing in bodily autonomy means you have to support the idea that other people — your friends, your peers, your siblings may choose to abort a pregnancy because their child could be like you. Yes, it’s hard. But that’s why it’s a conversation we have to have, because if we don’t, decisions about us and our futures get made by others, without us.

The right to decide what happens to our bodies is a fundamental principle in the disability community, and with good reason. Both of my parents had achondroplasia, the most common form of dwarfism. When they started trying for a family, they knew what the probabilities were of the baby dying shortly after birth. But since FGFR3, the gene for achondroplasia, hadn’t been discovered yet, they endured three pregnancies, three baby showers, and three losses before I came along. The trauma was long-lasting and put significant strains on my parents’ marriage. I know this is why my mom was unwavering in her support of abortion. A person should have the right to choose.”

Sterilization

“During the Supreme Court nomination fight for Brett Kavanaugh, disability advocates were intentional about focusing on his arguments that women with intellectual disabilities didn’t have the right to make decisions about medical procedures conducted on them. We know that 90% of people with developmental disabilities are survivors of sexual assault.”

“We also live in a country where Buck v. Bell — the 1927 U.S Supreme Court case in which the sterilization of people with disabilities was ruled constitutional — has never been overturned. The same country where the carceral system, which is disproportionately disabled, uses sterilization as punishment or an “incentive” toward release. When those in power determine you are “undesirable,” there undoubtedly is a mechanism taking reproductive rights from you without a choice.

The reality is that people with economic means will always be able to access the procedures they need. But a majority of people with disabilities, who are disproportionately lower income, will never have this luxury. Bans like the ones in Alabama, Georgia, Ohio, and now Texas will serve only to perpetuate the cycle of poverty and disability.”

Incontinence

““25% of young women and 44–57% of middle-aged women also experience “some involuntary urine loss.” And doctors can’t be prepared to offer long-term solutions to incontinence if they’re not prepared to even talk to their patients about it. Stats state that 50–70% of people who experience incontinence don’t seek treatment for it, likely due to the same stigma I’ve experienced for most of my life, which can lead to greater health risks.”

Crip Time

“My own disabling condition, a genetic disease, means that the collagen in my body doesn’t hold its shape. This is bad news for my joints and tendons, my heart and my gut — but great for my skin, which remains soft and wrinkle-free into my forties, meaning I’m perpetually mistaken for being younger. One of the medical criteria for my condition is, literally, having skin “like velvet.” In our youth-obsessed culture, vampiric agelessness is often seen as a good thing, and it does come with certain privileges. But I sometimes tire of not being taken seriously, of working my sick self into the ground to climb the tenure ladder while being perceived as a perpetual graduate student.

And on a deeper level, being a crip vampire spins me back into that whirlpool of time travel. I look twenty-five, feel eighty-five, and just want to live like the other fortysomethings I know. I want to be aligned, synchronous, part of the regular order of the world.

Like the leaves just now turning as the year spins toward its end, I want sometimes to be part of nature, to live within its time. But I don’t. My life has turned another way.

I live in crip time now.”

A Lost Cause

“There’s a rite of passage many disabled people experience during their formative years, and it is this: being told by someone with influence in your young life that you are a “lost cause.” For many, it is a teacher who abuses them with the declarative statement.

For me, it was my grandfather.

It wasn’t said directly to me, but instead to an aunt as rationale for his and my grandmother’s choosing to decline taking me in after Child Protection Services found me after I had been home alone for five days.

My mother had abandoned me to enroll in a high-end weight-loss retreat in Beverly Hills.

My grandparents — who had enjoyed some positive press statewide for having fostered a group of siblings who’d lost their parents in an accident in the 1970s declined to take me in.

Those siblings had been bubbly, engaging, and white

My grandparents were white.

I, however, was their white daughter’s little Black accident.

And, as it was determined after I became a ward of the State of California in 1986, I was autistic. I didn’t find out about the “lost cause” conversation until the summer I graduated from high school twelve years later, when my aunt casually brought it up. I’d been acquainted with her for about four years by this time.

“I was going to take you in myself,” she said as she drove us on the 101 down the Peninsula, “but Dad told me that he didn’t think it would be the right thing to do because you were a ‘lost cause.’”

I looked at the highway without blinking,

“Lost cause?”

She cleared her throat.

“Well, you rocked back and forth a lot and repeated what everyone around you said all the time, and your hair was a mess…You wouldn’t stop picking at it….He and Mom..I guess they were worried that you were retarded or something…” She sat up straighter and patted my knee. “But hey, all those scholarships you got offered this year really show how wrong he was, don’t they? Not everyone gets full rides, you know? Especially if their moms die during freshman year like yours did! Good for you. I know he’s proud.”

“Yeah.”

And with that, I didn’t mention autism again for nearly fifteen years.

“I got pregnant.

I became symptomatic. I am unable to “mask” autism symptoms — hypersensitivity to sound/light/smells, limited tolerance for social situations, obsessive focus on tawdry details, and seemingly exaggerated responses to physiological discomfort — when I am in physical pain, and my pregnancy was very difficult.

My husband made it clear that he had no interest in being a parent, so I moved out.

I disclosed my disability at work. I had no choice. I was in physical agony and could no longer mask my symptoms.

My coworkers, all passionate about serving people with disabilities, did not appreciate having a disabled coworker. Or supervisor, for that matter.

My annual performance review, administered while I was eight months pregnant, barely qualified me for an inflation adjustment raise and was followed immediately by a write-up for being a source of negativity for the department.

I went home and had a meltdown.

I punched my stomach once, forgetting for a millisecond that I was pregnant, then switched to bashing my head into the bathroom door over and over again.

“She’s a lost cause.” I heard my now-dead grandfather say that every time my head made contact with the door.

I took a day off.

I went back to work.”

Access-A-Ride

“Access-A-Ride customers must schedule rides by five p.m the day before travel. Depending on our “appointment time,” we receive a computer-generated pickup time. Travel times are supposed to be coordinated by the distance between a passenger’s pickup and drop-off locations, but pickup times are often as many as two hours ahead of appointment times. For example, Access-A-Ride anticipates a “maximum ride time” of one hour and thirty-five minutes for a travel distance between six and nine miles. Rain, shine, and seasons aside, passengers scheduling rides are instructed by call center operators to be outside our pickup location at our scheduled pickup time, even though our ride may be nowhere near at that time. We are also instructed to be prepared to wait up to thirty minutes for our drivers in case of traffic or delays. Drivers who arrive within that “thirty-minute window” are still considered to be on time, even though the passenger may have been outside for up to half an hour at that point. Those thirty-minute delays may actually turn into hours-long waits for many customers, as drivers must follow predetermined routes that lengthen trips and exacerbate travel conditions. Drivers, on the other hand, are instructed to give late passengers only a five-minute grace period. Drivers are also encouraged to call passengers if they do not see us when they arrive, but such calls are considered a courtesy, not a requirement.”

“Violations of any Access-A-Ride rules, including canceling a trip with less than two hours’ notice, can lead to point assessments that affect passengers’ service eligibility. A recent Access-A-Ride audit by the New York City comptroller found that more than 31,000 passengers had been stranded in 2015.”

“Access-A-Ride users have no idea which direction their rides will travel or how many stops will be made before their destinations. In picking up and dropping off passengers on those rides, a meandering city tour is not uncommon — including riding past your destination only to ride back to it.”

Ugly Laws

“Ugly laws used to be

on many U.S. cities’ lawbooks,

beginning in Chicago in 1867,

stating that “any person who is

diseased, maimed, mutilated,

or in any way deformed

so as to be an unsightly or disgusting object,

or an improper person to be allowed

in or on the streets, highways, thoroughfares,

or public places in this city,

shall not therein or thereon

expose himself to public view,

under the penalty of $1 for each offense.”

Benjamin Lay

“Who was Benjamin Lay? Born in England in 1682, Lay was one of the first white radical abolitionists. An autodidact, he was a sailor, glove maker, bookseller, and author. He wrote one of the world’s first abolitionist texts, All Slave-Keepers That Keep the Innocent in Bondage, Apostates. A devout Quaker, Lay loudly called for the church to cast out slave owners. He boycotted slave-produced commodities.

His time at sea, and particularly his experiences in Barbados, fueled his hatred of slavery, and he later became notorious for theatrical protests at Quaker meetings. In one spectacular demonstration, in 1738 at the Philadelphia Yearly Meeting, he hid a bladder filled with red juice inside a book, then ran his sword through the text, spattering “blood” on the stunned slave owners present.

At the time, many Quakers resisted Lay’s abolitionist views. Just as Lay had called for slave keepers to be cast out of the church, they cast him out of his. They disowned him. They denounced his book. They stopped him speaking at meetings — often physically removing him from the premises. They even withheld his marriage certificate to his wife, Sarah.

While talking and tweeting about Lay’s life, I encountered those who — in good will, I’m sure — thought it best to celebrate Lay’s achievements without mentioning his dwarfism.”

Intersectionality

“Comprising no less than 20% of the US population, people with disabilities are the largest “minority” group in the nation. Notably, among differing socially constructed racial categories, the Black community has the highest prevalence of disability — with almost a full quarter of the Black community having some form of disability.”

“People with disabilities are twice as likely to live in poverty because poverty operates as a cause and consequence of disability;

• Children with disabilities enter the juvenile legal system at five to six times the rate of youth who do not have disabilities, with 65 percent of boys and 75 percent of girls in juvenile detention having at least one mental illness, and up to 85 percent of children in juvenile detention having at least one disability; and

• 55 percent of male state prisoners and 73 percent of female state prisoners have a mental health condition, with just 1 in 3 state prisoners and 1 in 6 jail inmates receiving treatment for their illness since being admitted.”

“Darnell T. Wicker, a Black deaf veteran, was killed by police officers in Louisville, Kentucky, on August 8, 2016 (note that the lowercase d indicates that Darnell Wicker was deaf, not culturally Deaf). Body camera footage shows officers shooting Darnell Wicker multiple times within one to two seconds of issuing verbal orders on a dark night. However, Damell Wicker relied on speech-reading to communicate. His family asserts that he likely never heard or comprehended the officers.

The circumstances surrounding his murder made clear the critical importance of naming Darnell Wicker’s deafness and Blackness as having been criminalized by police officers. Yet still, no national coalition, network, cohort was found to have even made mention of Darnell Wicker’s deafness during their physical or online actions “in his name.””

“Two hundred disabled and fat and elder people held signs that say IRREPLACEABLE and #NoOneIsDisposable at the Crips and Fatties Close the Camps protest in front of the ICE office in San Francisco — part of a month of daily protests in August 2019 against Trump’s torturous ICE concentration camps — these protesters, created by fat and disabled people drawing connections between our experiences (with being locked up in psych institutions, nursing homes, and back wards) and those of immigrants (including disabled immigrants) being locked up right now.”

A Communication of Love

“Our experiences differ. Shannon can briefly get up to use the toilet, bathe, and, on a good day, make herself a meal. I, on the other hand, have to do everything in bed-brush my teeth, bathe, and use the “bathroom” — a plastic bag for bowel movements and, for urinating, a dubious-looking plastic container attached to a tube feeding into a bucket on the floor. These are not sexy things but are part of life — my life and ours together.

I was embarrassed at first to ask Shannon to avert her eyes and try not to think of me urinating inches from where we had been kissing just seconds earlier. But I have since come to realize that it’s all part of sharing our lives. It may be far from the bedroom romps we each had experienced before getting sick, but knowing that nothing about my bedridden life makes Shannon uncomfortable endears her to me.”

“Shannon has never heard my voice. She has never heard me berate a telemarketer or mumble to myself after making a typo. She has never heard me mess up a dinner toast or tell a corny joke. She has never heard me whisper into her ear or come up with a witty reply. She has never heard me ask a question or speak my mind, to anyone.”