I. A choice to be disabled?
One of the main characters in Jonathan Safran Foer’s 2002 novel Everything Is Illuminated is a blind chauffeur otherwise known as Grandfather. Grandfather claims to be blind and has a “Seeing Eye bitch,” as Alex, the tour guide with a talent for choosing the wrong word, refers to their dog. Yet Grandfather is also the driver for Heritage Touring, the family outfit that has promised to help the protagonist, named Jonathan Safran Foer, find the shtetl his grandfather fled during the Holocaust. Grandfather spends most of the book driving Alex, who is also his grandson, and Jonathan around Ukraine in this pursuit.
The Grandfather in Everything Is Illuminated is, I believe, a literary example of a transabled person: in a nutshell, an able-bodied person who identifies as disabled or feels they are meant to have a disability. Many transabled people describe a distressing mismatch between the way their bodies are (able-bodied) and the way they feel their bodies should be (disabled, and usually in a very particular way, such as having the left leg amputated above the knee). Some mental health professionals as well as some transabled people view this mind-body mismatch as analogous to the dissonance that people with gender dysphoria, formerly called gender identity disorder (GID), feel between their bodies and their gender identities. This analogy, as Australian National University sociologist Jenny L. Davis points out in a 2012 paper, gave rise to the term Body Integrity Identity Disorder (BIID) to describe transableism. The current term for the condition seems to be Body Integrity Dysphoria (BID).
Transabled people fall into three porous categories, according to Davis. ‘Pretenders’ act out their wished-for disabilities. ‘Devotees’ sexually fetishize disability. ‘Wannabes’ want and sometimes seek to realize the disabilities they feel they should have; this subgroup includes people who ask surgeons to amputate functioning limbs and, when refused, injure themselves in order to make amputation medically necessary.
The Grandfather’s pretending is the most obvious example of transableism in Foer’s novels, but it’s not the only one. I see connections between Foer and all three varieties of transableism. It seems to me that the imagined or wished-for disabilities serve, in Foer’s work, as stand-ins for loss—and this bothers me.
Foer aside, transableism interests me for a personal reason. In the summer of 2018, I was writing an essay exploring whether or not I identified as disabled. It was a difficult question because most of the time hydrocephalus, the neurological condition that I was born with, characterized by accumulation of spinal fluid in the brain, doesn’t cause me major problems. My hydrocephalus only demands attention when my shunt, the device that drains the extra fluid, gets clogged. When it’s a problem, however, it’s a big one, requiring brain surgery. I am confident, now, in calling it a disability because when the shunt fails, I’m really incapacitated and for the more basic reason that having hydrocephalus means my brain doesn’t function the way it should. But my hydrocephalus is not the constant limitation that I would, in a knee-jerk way, think blindness or deafness or not being able to walk might be. That’s why I hesitated, for about a year, to call hydrocephalus a disability and myself disabled.
In particular, the notion of identifying as disabled made me uncomfortable because it sounded sort of like choosing disability. If I have a choice about it, I said to myself, wouldn’t I choose not to be disabled?
All this was on my mind when, at a picnic in the park in June of 2018, I encountered the concept of transableism for the first time. As I would soon learn, transabled people get a fair amount of flack, dismissal, and criticism because of the perception that they are choosing disability. Just read the tweets included in this article (headline: “People Are Becoming Disabled By Choice And Labeling Themselves ‘Transabled’”). For example, “I think this is completely sick because people who have disabilities from minor to major would give anything to live a normal life and do everyday normal activities , tasks and genuine things that people like this clearly take for granted , this is to far [seven red angry emoticons]” tweeted Magan G. The tweet, which I copied typos and all, was in response to an article (headline: “100% Physically Healthy Woman Wants To Live as a Disabled Person, Identifying as ‘Transabled’”) about Chloe Jennings-White, who uses a wheelchair despite being able to walk.
In 2013 the British tabloid The Daily Mail reported that from the age of four Jennings-White felt that her legs should not work. Following a psychiatrist’s advice, she started using a wheelchair, the article said. “The chair gives me psychological relief, instead of physical,” The Daily Mail quoted her as saying. In that article and in a truly video profile of Jennings-White published around the same time, she said that she would have surgery to paralyze her legs if she could but that it was prohibitively expensive.
I can understand some of the feeling behind the blowback. Transabled people are often seen as choosing disability because it’s something they want. For me, on the other hand, being born with a medical problem was an unfortunate thing I had no choice about. When I juxtapose my experience of disability with what I imagine transabled people feel about the disabilities they yearn for and pursue, I am jealous of the transabled person for having a choice and not using it as I imagine I would.
Why would someone choose disability? I asked. There’s ableism in the question. Why wouldn’t someone choose that, unless there were something wrong with being disabled? Is that what I’m saying?
It is part of what I’m feeling. While transableism interests me as a concept, its reality bothers me, or did at first. I felt uncomfortable looking at photos of Jennings-White smiling in her wheelchair. Yet what’s so bothersome about a person in a wheelchair smiling unless I think that people with disabilities must be miserable all the time? Part of my discomfort certainly came from the idea, which I later learned was an oversimplification, that Jennings-White chose to use the chair, though she could walk, and that if she had been able to afford surgery, she would have actually become paraplegic.
Had life given me a choice, I wouldn’t have opted for disability, not because there’s something morally wrong with disability or with disabled people but because having a disability is difficult. People make the best of it. But usually the acceptance of having a disability and the making the best of it and even the discovery of silver linings in it are all things that happen after one has become disabled. These are responses to the disability or attitudes that develop alongside it. Transabled people, on the other hand, seem to have not just an acceptance of disability but a wish for it, something that precedes or is entirely independent of disability itself. That’s hard for me to understand. It’s hard for me to see disability as something not just tolerable but desirable, as something a person would choose.
And yet, having identified as disabled in my 30s because of a medical condition I’ve had all my life, I also wondered, that June day in the park, as a fellow picnicker thrilled the group with stories of wannabe amputees sawing off their own limbs, if I’d done the same thing, or something similar. Did I choose disability? I wondered. Was I just as bad as transabled people, or guilty of the same transgression, if it is a transgression?
Also: Wow, this reminds me of Jonathan Safran Foer.
II. Transableism in Foer
There are hints of all three varieties of transableism—pretenders, devotees, and wannabes—in Foer’s novels, though some of the connections are more straightforward than others. In all cases, disability, wished for or real, relates in some way to loss.
The Grandfather in Everything Is Illuminated is obviously a pretender. Everyone knows that he can see—he drives a car for a living!—but he pretends to be blind after losing his wife. The imagined loss of sight embodies the real loss of a partner. The feisty guide dog, named Sammy Davis Junior, Junior, helps not with navigation but with loneliness. As grandson Alex explains: “My grandmother died two years yore of a cancer in her brain, and Grandfather became very melancholy, and also, he says, blind. Father does not believe him, but purchased Sammy Davis, Junior, Junior for him nonetheless, because a Seeing Eye bitch is not only for blind people but for people who pine for the negative of loneliness.”
Something like pretending also shows up in Foer’s 2016 novel Here I Am, which follows Jacob, a Jewish writer in D.C., and his family as Jacob’s marriage falls apart. Jacob attends conferences of the National Association of the Deaf (NAD) on the pretenses that he teaches at a school for deaf children and that he had a deaf father, though neither of these things is true. He doesn’t pretend to be deaf, but he does learn sign language, secretly. Overall, he claims an affiliation with deaf people that he doesn’t actually have. Foer also mentions that as a child, Jacob pretended to have various disabilities, from feigned blindness all the way to playing dead.
Adult Jacob feels defeated in his life and in his marriage. He also faces sexual impotence. An imagined disability, or connection to disability, gives him somewhere to put his feelings of inadequacy. It’s as if, by embracing deafness, Jacob were saying, See? I have a reason to be sad.
A line about Jacob’s childhood pretending, however, falls outside the model of transableism as embodied loss: “He chose illness, because he knew of no other way to be seen. Not even by those looking for him,” Foer writes of Jacob. These two sentences suggest that Jacob uses disability the same way that transabled people are sometimes accused of doing: to get attention. What Jacob doesn’t seem to understand is that if people are seeing him as disabled, they’re not seeing him at all. He isn’t presenting his true self.
Or is he? That’s the tricky thing about transableism. Many transabled people believe that their true selves are disabled, though their bodies are not, as if disability were a spiritual state. “. . . [O]ur self-image is that of a paraplegic (or amputee, or blind, or any number of other disabilities) [rather] than that of an able bodied man or woman,” wrote Sean, founder of Transabled.org, a now-defunct forum for transabled people, as quoted by Davis in her 2012 paper. If you look at it that way, you could say that in feigning disability, Jacob isn’t lying but revealing a part of himself he normally hides.
The devotee phenomenon shows up in Everything Is Illuminated in the form of Safran, the grandfather of the Jonathan Safran Foer character. Safran has a “dead arm” (unfeeling, paralyzed), which draws the ladies of the shtetl to him. These women aren’t exactly devotees; it’s not as if they dreamed of meeting a sexual partner with a dead arm and the guy appeared in the form of Safran. Still, the basic idea of being attracted to someone specifically for their disability sounds like devotee behavior to me. It’s also about loss. Many of the women who fetishize Safran’s arm are widows. For Rose W, for example, Safran’s arm stands in for her late husband’s penis. “He was happy to let his dead arm serve as the missing limb for which the widow longed, for which she reread yellowing letters, and lived outside herself, and outside her life,” Foer writes of Safran.
Foer’s novels don’t exactly mention wannabes, but there is one case where a character acquires a disability, and the question of how it happened comes up repeatedly. In Here I Am, Jacob’s oldest son, Sam, has a deformed though functional hand that got shut in the hinge of an iron door when he was a little kid. After the accident, when Jacob says they need to go to the ER, Sam protests, “We don’t! We don’t! It was on purpose! I did this on purpose!” Sam is not, despite what he says, a wannabe realizing a disability fantasy. He says he did it “on purpose” because that’s how his parents, through discussions of intention versus accident, have taught him to deal with mistakes and misfortunes.
The philosophy Jacob has passed on to Sam and his younger brother Max is that an intentional wrongdoing is worse than an accidental one and also that something that might seem like misfortune, if done intentionally, can be recategorized as ‘okay.’ The kids exploit this notion as you might imagine. “Once, Max ran into the kitchen crying, holding his stomach. ‘I punched him,’ Sam said from the living room, ‘but not on purpose,’” Foer writes. But Sam uses this way of thinking not just to get away with things but to cope with a traumatic event. According to this same sort of logic, people who become disabled on purpose could, as Sam tries to, avoid the sadness and loss they might feel had they become disabled by accident. Reality actually bears this out: Many transabled people who realize their desired disabilities report feeling better once their bodies match their identities. I wonder if this—that one person’s misfortune could be another’s wish—was something Foer was trying to communicate through Jacob’s affinity for deafness.
As for Sam’s injury in the novel, it really was an accident. By the end, the reader has the idea, though some murkiness remains about exactly what happened, that one parent opened the door and the other shut it on Sam’s hand. The child’s damaged hand becomes a metaphor for the way the parents’ unhappy marriage affects the children.
Foer’s equation of disability with loss is at best unrealistic and at worst insulting to disabled people. The idea that a disability, real or pretend, symbolizes loss and pops up when characters are feeling vulnerable is offensive because real disabilities happen without representing anything. Disability itself may be a loss—of a limb, say, or a sensory ability—though not necessarily; people born without certain abilities may not perceive their absence as something missing. But in real life, a disability doesn’t just appear in order to symbolize some other loss. People don’t just go blind because a spouse dies.
I’d go so far as to say that using disability as a metaphor for anything is problematic. Such metaphors suggest some sort of blanket truth applicable to everyone with a given disability such as, for example, the equation of “deaf ears” with close-mindedness. Less offensive but still frustrating is the way that such metaphors take the intractable and inexplicable nature of disability and assign it meaning. I sometimes wish that my hydrocephalus and its periodic complications meant something, had a rhyme or reason, were something other than random. Foer’s giving disability meaning in literature makes it seem more bearable, emotionally, existentially, than it really is.
How to write disability is a worthwhile question, and a good answer would extend beyond Foer, but that’s not the essay I’m writing. What interests me are questions about the motivations and morals of the characters in Foer who pretend to be disabled. I want to consider whether Foer’s pretenders did something wrong in choosing disability because the answer has implications for me.
III. Moral questions
I don’t think it’s wrong for a hearing person to learn sign language or to be interested in Deaf culture. But I am sure that it’s wrong to lie in order to gain access, as an insider, to a community that isn’t one’s own, which is exactly what Foer’s Jacob did when he attended NAD conferences under the guise of teaching at a school for the deaf.
Jacob himself feels that there is something wrong with his interest in deafness. He doesn’t tell his wife, his psychologist, or anyone about it, “as it felt distasteful, wrong,” Foer writes. But Jacob doesn’t try to understand what’s behind his guilt. Instead, he lies and hides. He may see lying as papering over what he hazily perceives as the distastefulness of the truth. But goodness, Jacob: Since when does lying improve things?
The Grandfather in Everything Is Illuminated lies, I guess, but it isn’t much of a lie. He pretends in the sense of playing a game that everyone knows is not real. Respecting the Grandfather’s claim to blindness and the idea that he needs a dog to guide him is a way for Alex to give his grandfather some privacy around what he’s really feeling: grief and loneliness. Or a way of expressing loyalty: Grandfather, this makes no sense, but I’ll go along with it because I love you.
I am not lying or pretending when I say that I have a disability. Nor am I transabled. I’m not someone who feels an identification with disability and then tries to express that physically. I’m a person who was born with lifelong physical problems who is thinking about what to call them. I’m owning who I am, not trying to change it.
But transabled people say that they too are owning and expressing their true identities—through disability. Doing that often involves a physical change, such as the donning of dark glasses or leg braces, the use of a wheelchair, or even surgery.
Maybe transabled people and I are actually seeking the same end—self-definition—through different means. While I seek a label and an identity to match my body and experiences, some transabled people seek to adjust their bodies to match the labels and identities they’ve already claimed. The idea of choosing disability was what bothered me about identifying as disabled and about transabled people feigning or trying to acquire disabilities. Choosing disability was the ‘transgression’ I feared transabled people and I shared. But in neither case is a person’s disability identity entirely a matter of choice. It’s always, in part, just the way you are. Further, I wouldn’t say that choosing disability, even if you could do so with designer-level control over body and soul, would necessarily be a transgression. As I said before, why wouldn’t someone choose that?
Because I was born with a disability and then, decades later, identified as disabled, I struggled with the idea, implicit in transableism, that disability identity could come first or even exist separately from disability itself. Looking at it again, however, I realize that I myself illustrate the idea: As a kid, I considered myself able-bodied despite my hydrocephalus and my balance problems and my lazy eye that necessitated kindergarten eye patches. If a disabled person can identify as able-bodied, as I once did, then I don’t see why an able-bodied person can’t, in a similar vein, identify as disabled. To argue that one can’t be disabled by identity alone or that there’s something wrong with a disability acquired through some element of choice is to have a cisnormative bias (as Alexandre Baril, an assistant professor in the school of social work at Canada’s University of Ottawa who studies transableism, elaborates in a 2015 paper).
I still think it’s wrong to lie, about disability or about anything. But to be transabled and open about it is, on the contrary, to be honest, and I think that’s a good thing.
IV. A fantasy of belonging?
In identifying as disabled back in 2018, I wasn’t just seeking a label; I also sought community. Having realized that some of the experiences I associated with my “one-in-a-thousand-babies” medical condition are common among people with various disabilities and that these commonalities can create community, I wanted to be part of it.
I think Foer’s Jacob sought community at the NAD conferences he attended, where he interacted with deaf people and practiced his sign language. It’s too bad, then, that he didn’t find a community that he could join as himself. On the other hand, I also wonder if that—joining a community not one’s own—was part of the appeal. Trying to join a community that one could never truly be a part of may allow someone like Jacob to believe that identity is the barrier to belonging, allowing him to say, in effect, I can’t truly belong because I’m not deaf, instead of facing the fact that belonging to any group is hard and that the barrier is internal.
I say all this as “someone like Jacob.” I identify with him; I feel sympathy for the guy. I think that a search for community or a feeling of belonging is part of my wish to name and claim my various identities just as I think it could be part of Jacob’s wish to adopt a different identity altogether. Realizing that I’m disabled and also that I like women—it’s in part an explanation for why I’m not living happily ever after with a man right now. An explanation for why I sometimes feel I don’t fit in. That’s not to say that I’m not queer or not disabled. But I think that I would like to let the idea that “oh, I was in the wrong group; I was miscategorized” carry all the weight in explaining why I have trouble connecting with people when it may actually be something personal, maybe even something over which I have a degree of control. Identity can’t explain or solve all problems.
I’m reminded of the 2015 film “The Lobster,” directed and co-written by Yorgos Lanthimos, in which awkward single people are put together in a hotel where they must find partners—or be turned into other animals. There is a misconception in the “Lobster” crowd that common vulnerabilities are what make a relationship, to the extent that one man who wants to pair off with a woman who gets frequent nosebleeds goes off and bashes his head against the wall to get a bloody nose and demonstrate to the woman that they are the same and therefore should get married. The character pretends to have a physical problem in order to claim that he fits with another person, but his pretending doesn’t make him fit or solve his relationship problems; it just gives him a bloody nose. I suspect that this—finding yet more ways to not belong—is the fate of people who falsely claim identities in order to try to fit in, even when the group they want to join is already on the margins.
If transabled people were, like the lobster guy, trying to change their identities in a last-ditch effort to fit in, I could sympathize. But that’s not what they’re doing. Transabled people aren’t trying to change their identities; they’re expressing them. And maybe Jacob, with his affinity for disability, is expressing his identity, too. Maybe, on some level (and only on some level—Jacob still isn’t deaf, and he shouldn’t lie about why he wants to attend the conferences), the National Association of the Deaf is a community Jacob can join as himself, if we accept that disability can exist as identity alone. Jacob feels disabled. His disability identity, which I’d describe as a feeling of weakness or powerlessness, may not be exactly the same as mine or the same as other people’s. But whoever said all disabled people feel the same way? Alternatively, and on a more practical level, perhaps someone like Jacob could see about attending an NAD conference as an interested hearing person or as an ally for deaf people—if he were truly committed to allyship.
In the end, I accept Jacob as he is. I don’t think a kid would pretend to have a whole string of disabilities and then learn sign language and attend conferences of a civil rights organization for deaf people simply in order to fit in. There must be more to it than that. As to what it is, we’d have to ask Jacob.
Part of the reason that I’ve relied on fictional depictions of transableism is that to my knowledge I’ve had no personal experiences with transabled people. I’ve read papers about transableism by psychologists and sociologists; I’ve read a blog by someone who pretends to be blind. I looked at an archived version of Transabled.org. But mostly transableism is theoretical for me. I can imagine why transabled people might pretend to have disabilities or try to acquire them and relate those imaginings to my own identity-seeking—indeed, it’s that feeling of a connection to transableism that fuels my interest—but I don’t know why transabled people do what they do or feel how they feel. I don’t know how the lives of transabled people relate to my life or to characters in the novels of Jonathan Safran Foer. But I wonder if the wish to adopt the identity of a disabled person has something to do with the wish to belong. That’s a wish I understand.
V. Fantasy meets reality
I hadn’t met any transabled people, that is, until I interviewed Chloe Jennings-White, whom I thought of as “the able-bodied woman who uses a wheelchair because she wants to be paraplegic.” I contacted Jennings-White to make sure that the claims about her from the 2013 Daily Mail article and truly video were accurate, given their sensational bent, or still accurate, given how much time had passed since the article and video came out. Turns out, many of the claims were false.
Nobody from The Daily Mail ever interviewed her, Jennings-White told me via Facebook Messenger. That Daily Mail article is the basis of many derivative articles about Jennings-White, and it’s those articles that people react to with so much anger. It’s those articles that made me feel uncomfortable about transableism and, yes, about Jennings-White. But according to Jennings-White, that article is “mostly fiction”—as many of my ideas about transableism seem to be.
Jennings-White, a retired research chemist who lives in Cedar Valley, Utah, does not identify as transabled, nor does she see her mind-body mismatch as an identity issue. “It is simply a brain difference,” she said. To say that she ever wanted to have paraplegia—partial or complete lower-body paralysis involving both legs—is an oversimplification. “It would be more accurate to say that, since a young child, my brain has suggested that my left leg should not function and my right leg should have a relatively minor impairment,” Jennings-White told me.
In the past, Jennings-White did want her body to match her mental map, and she told me that when she was nine, she tried to achieve that by riding her bike off a stage in a park. She has also described fantasies of lower-body paralysis. “I have to admit any time I’m driving I sort of conjure up accident scenarios in my mind where I would become paraplegic,” she said in the truly video. She has also wanted surgery to paralyze her legs. “When I have that surgery, I just know, it will be the happiest day of my life,” she said on camera in 2013. But now, more than seven years later, Jennings-White no longer wants to change her body to match her mental image of how it should be. She no longer wants surgery.
The statement that Chloe Jennings-White is an able-bodied woman who uses a wheelchair because she wants to be paraplegic is untrue. It never was true. Jennings-White was born with a disability, low-frequency hearing loss. Since 1986, she’s had fibromyalgia. In 2006, Jennings-White had a skiing accident that injured her spinal cord and partially paralyzed her left leg. While it’s true that a psychiatrist suggested she use a wheelchair to help with her mind-body mismatch, that’s not the main reason she uses it. Rather, her physician, who also knew about her body integrity dysphoria (BID), prescribed the wheelchair in 2008 for the back pain that resulted from her spinal cord injury. “The primary relief from using a wheelchair is the reduction of physical pain,” Jennings-White said. “As any chronic pain patient will tell you, this results also in a huge psychological relief. It is also true that I feel more normal while using a wheelchair,” she continued. “A wheelchair calms down the mismatch with the brain map and goes a long way towards no longer desiring further impairment,” she said.
According to Jennings-White, it’s not just her story as told by The Daily Mail but the whole notion of people with BID as able-bodied people who want disabilities that is false. Most people with BID she’s spoken with—about 75 percent, she estimates—also have disabilities over which they had no control. “I know very many people with BID who had no choice about being born with cerebral palsy, spina bifida, Ehlers-Danlos syndrome, etc.; or who had no choice about acquiring multiple sclerosis, reflex sympathetic dystrophy, fibromyalgia, etc.; including myself,” she said.
Clive Baldwin, a professor of social work and director of the Centre for Interdisciplinary Research on Narrative at Canada’s St. Thomas University, has interviewed approximately 50 transabled people as part of a study on transableism, and he echoes Jennings-White’s view that people with BID don’t necessarily want disability in and of itself. “A few participants made the important distinction between acquiring an impairment (which was something they wanted) and being disabled (which they did not). This reflects, I think, the social model of disability—that people may have a physical impairment but it is society that disables them. The participants who expressed these views were very clear that they wanted to be able to do everything they wanted to do, just with the physical impairment,” Baldwin told me in an email.
I think it’s time to throw out the concept of transabled people or people with BID as able-bodied individuals who choose disability. It’s not just that identity isn’t 100-percent choice. It’s that many people with BID already have disabilities. If they seek further impairments, it’s for the sake of the physical change itself, not in pursuit of disability per se. There’s even an argument, advanced by Baril in his 2015 paper, that BID (which he calls transability) causes so much mental distress that it is disabling in and of itself. Looking at it that way, those with BID aren’t able-bodied people who seek disabilities; they’re disabled people who seek yet other impairments. I think that disability is a matter of personal identity; I wouldn’t categorically impose it on a group of people with a given impairment. But if a person identified as disabled by virtue of their BID, I would accept that.
“The problem that I run into,” Jennings-White said in the 2013 video profile, “is that people make up these fantasies about [BID]. They say, ‘oh, well, you’re doing it to get disability benefits; you’re doing it to get attention.’ And then you say, ‘no, that’s not it,’ and they’ll come up with another fantasy.”
My notion of the transabled person who seeks disability in order to fit in among disabled people seems to be one such fantasy, inspired by a character in Jonathan Safran Foer and by thoughts about my own identity-seeking. I’m the one with the fantasy of belonging.
Corresponding on Facebook Messenger with Chloe Jennings-White, who does not refer to herself as transabled, is the closest I’ve come to a flesh-and-blood transabled person. Rather than illustrating ideas and theories about transableism, she blows them out of the water. She’s not an able-bodied woman who wants or needs an impairment. She’s not someone who is disabled in identity alone. She doesn’t, like Foer’s characters, use feigned disability as a receptacle for loss or weakness. She doesn’t feign disability at all: In her wheelchair, she’s not pretending to be paraplegic; she’s managing back pain along with BID, and she’s open about that. These differences between ideas about a group of people and the complex reality of an individual aren’t surprising. Nor is it a shock that Jennings-White doesn’t resemble a character out of a Foer novel.
So why consider these entities—transableism, Jennings-White, Foer and his characters—together? I’m the reason. Transableism as a disability-identity issue interested me because of my own qualms about choosing to call myself disabled. I wondered if the backlash against transabled people, perceived as choosing disability, might also apply to me. I wondered if it might apply to Foer’s characters, who were easier to think about than real people, given my unlimited access to their (fictional) lives. I also just thought it was interesting that transableism appeared, unnamed, in two of Foer’s novels. But the observation that transableism existed in Foer wasn’t enough; I wanted to know what it meant for Foer’s characters to feign disability. And I wanted to know whether identifying as disabled in this extreme case where the disability isn’t mild or chronic but nonexistent was right or wrong, not just in Foer but also in the real world. That brought me to the real-world object of the backlash against transableism, Chloe Jennings-White, who, as it turns out, is not the headline the Internet has made her out to be.
The backlash isn’t really against Jennings-White. It’s against the idea she has come to represent: that of a person choosing disability. To listen to Jennings-White, it’s dubious whether this notion of a person who wants disability itself, that is, an impairment and accompanying limitations, has any representation in reality. There probably are people out there who choose disability (putting aside for now my caveat that identity isn’t really a choice), but I imagine that they have complex stories, just as Jennings-White does, just as we all do, that make generalizations difficult. I think the idea of transableism is most real, or best illustrated, as just that: an idea. An idea around which one could make up a story.
What’s illuminated in the stories people tell about transableism, be they Foer’s novels, academic models, or journalists’ fantasies? Not reality, exactly. Yet considering them together and passing them through the prism that is me has revealed a thing or two. Something like, “It’s hard to know how much of identity is choice and how much is given,” and “Sometimes maintaining outsider status, with the fantasy of belonging, can feel as important as fitting in,” and “People are complicated and don’t straightforwardly illustrate ideas.” Foer and Davis and Baldwin and Baril and Jennings-White and Lanthimos don’t all present the same picture of transableism, but they are part of the same richness. They cast light on each other and on my life, and I enjoy looking.
Baril, Alexandre. “‘How dare you pretend to be disabled?’ The discounting of transabled people and their claims in disability movements and studies.” Disability & Society. 2015.
Bayne, Tim, and Levy, Neil. “Amputees by choice: body integrity identity disorder and the ethics of amputation.” Journal of Applied Philosophy. 2005. https://pubmed.ncbi.nlm.nih.gov/15948330/
Davis, Jenny L. “Narrative construction of a ruptured self: stories of transability on Transabled.org.” Sociological Perspectives. 2012.
First, Michael. “Desire for amputation of a limb: paraphilia, psychosis, or a new type of identity disorder.” Psychological Medicine. 2005.
Foer, Jonathan Safran. Everything Is Illuminated. Houghton Mifflin Harcourt, 2002.
Foer, Jonathan Safran. Here I Am. Farrar, Straus and Giroux, 2016.
Money, John, Jobaris, Russell, and Furth, Gregg. “Apotemnophilia: Two Cases of Self-Demand Amputation as a Paraphilia.” The Journal of Sex Research. 1977. https://www.jstor.org/stable/3811894
Ashley P. Taylor is a writer of essays, journalism, and fiction. Find more of her work at www.ashleyptaylor.com.