The Invisible Panelist
Long before I became disabled at age 23, I had encounters with the unseen. Being queer gave me an innate sense of when to come out, how to hide, and how to recognize evangelistic rage. I was raised in a family distrustful of medicine. My mother ran a natural foods store where I worked for years, and I became a vegetarian at age 16 and was whole-heartedly involved in natural health and healing. My grandfather was the quintessential farmer stoic, and I learned self-reliance from him. When I was seventeen, he saw blood in his urine, was convinced by that and cardiac symptoms that he was on a fast road to the nursing home, and took out a gun and shot himself to death. There was a message we all heard — it was better to be dead than to be at the mercy of medicine.
I grew up in Central Illinois — a place where engulfing darkness swallowed the expanse at night, and the invisible was an ominous presence. To talk about my love for this place and my exile, to talk about the agricultural chemicals I ingested for all of my formative years that likely poisoned me, would take many chapters, so for now I want to talk about desire. Nobody there laughed in my face, but I heard girls making jokes in the locker room about dykes and I tried to look as girlie as possible. I had the Farrah Fawcett hair flip and I wore jeans with a big comb in the back pocket and I danced with boys and I didn’t allow myself to feel too much of anything.
The first girl I had a crush on wore a back brace, like Deenie in the Judy Blumebook. But hers was more of a corset, and she hated it because she was a gymnast with a taut, muscular body. So, one day she ripped off the corset after gym class and said, “screw it,” and never wore it again. She later went off to college to become a dancer. At that point, we were no longer friends, though in Junior High we walked twenty miles together for charity, sharing water and jokes and talking about our divorced parents. I never kissed her or admitted to myself that I was attracted to her. I learned how to keep my body separate and how to walk the tightrope of desire.
Desire connects very closely with the invisible. That which is not seen wants to be seen. That which is desired wants to be actualized. My days are filled with desire, a quality sometimes mistaken for healing enthusiasm or forgetfulness. But my desire is the desire that cannot be actualized – the desire to ride my bike or travel, to have normal friendships and a job, to take a walk, or to drive to the ocean. I am too sick to actualize almost all of my desires.
As a queer community, we are very familiar with intangible knowledge. What it means for a trangendered person to know an assigned gender doesn’t fit. What it means for a woman to know, through thirty years of marriage, that she is a lesbian. What it means to watch bigotry railed against people because of things that are rarely witnessed. I am amazed, with the queer community’s innate sense of visibility and invisibility, that this community-at-large does not support its invisibly disabled. This is not just my imagination; I have stood in front of crowds and made statements about CFIDS and been met with almost dead silence. In a community that wants me to be out as queer, I’m encouraged to “pass” as an able-bodied person. “Passing” as healthy, just like passing as straight, can be looked at two ways — it can be looked at as privilege, or it can be looked at as further degradation.
My own experience of this particular brand of passing has been one of further degradation. I don’t think anybody gets any real and lasting benefits from passing. Holding back desire is a profound struggle; it injures on the inside. I rarely want to pass as able-bodied. Sometimes I fantasize about saying to the cashier at Whole Foods, on my only outing in a typical week, “I am essentially bedridden” just for the mindfuck effect. I have not found adaptive technologies, except for an air filter I wear around my neck, which help me. I often stay invisible because it is the only way to get through an already exhausting day. It is a survival skill; I wish I didn’t have to use it.
But I want to return to the girl who shed her back brace, to talk about the notion of chosen bondage. Silence around my illness, to me, implies subconscious blame. It is the blame given to queer people by the Ex-Gay Ministries, those who assume one can shed the corset (or wants to) if given enough indoctrination. It is the blame given to people with CFIDS who don’t– like some single freakish patient — recover after taking blue-green algae. These stories are aberrations that justify neglect. I do not want assimilation or invisibility. I want to be seen for all that I am.
As quickly as I became disabled, I felt estranged from the disability movement. I was too cognitively impaired to read most books on disability and too sick to attend events, and I could not find a political framework that seemed to fully encompass non-apparent disabilities. Fresh out of a college where I took classes with names like Theorizing Race, Class, and Gender in Contemporary Capitalism, I realized that the word “disability” had been quietly excluded from the political analyses at my former institution. There were disabled people there, but all had type of disability that did not exclude them from the Darwinism of higher education. The queer community, with its cozy family atmosphere, no longer saw me as a sexual being — a fact which took on great irony for me as I became a very-published erotica writer– and they didn’t really want to give up their hair products to hang out with me, except in small token gestures and fragrance free events I still couldn’t attend. The fragrance free policies read like an apologia to the able-bodied, who still came with residual fragrance on their skin, comfortable that they had done the politically correct thing. In fact, I soon discovered that my own disability politic, like my disability, was invisible, a jet stream that helped hold the disability movement aloft but was not, itself, supported.
In my own progressive circles, where paradigms of oppression had been established through a history of labor movements, civil rights, and feminism, the focus on liberating individuals from socially-constructed oppression did not serve those of us deeply isolated from society, and literally disempowered by the inherent limitations of our disabilities. The disability movement, like most progressive movements, grew around a premise that social revolution would make an individual sovereign — with equity, with accommodation, the self could be empowered, and actualized. As Eli Clare wrote of this platform, “Rather than a medical cure, we want civil rights, equal access, gainful employment, the opportunity to live independently, good and respectful health care, unsegregated education. . . .Needless to say, a cure is not high on our list of goals” (Exile and Pride, 106). This list does not seem to apply to those of us who see treatment or cure as the only viable accommodations that would allow us back into society. A woman with milder CFIDS than I have, who has experienced substantial recovery, said to me the other day, “I am not better, but I can live with this.” I have spent too many days in a place beyond living, watching hours of reality TV because reality has become like an interesting form of fiction to me. I am too sick to have employment, attend any school, or live independently without treatment or cure.
As activist Sharon Wachsler pointed out to me, being Black, or female-born, or Jewish are not inherently difficult, but rather difficult because of bigotry. Disability cannot be modeled after these movements. Some of what disabled people suffer has to so with socially constructed ableism, but many disabilities primarily consist of inherent difficulties like pain, illness, or fatigue. While the disability movement at large has tried to overcome the pity and supercrip models of disability, and show that disability itself is not tragic or limiting while social bigotry is, the invisibly disabled have yearned to have their daily heroism and inherent limitations recognized. They remain, by and large, a dead letter office in the literature of disability, stilled testimonies unseen and forgotten.
So while the disability movement attempted to normalize disability and fight for social accommodation, invisible disability was still defined by an air of the paranormal. The invisibly disabled were portrayed as objects of faith or belief through a creationist type mentality — in which the strong-willed survived and the weak-willed suffered, dividing medical professionals into believers and unbelievers. Doctors still argue over the very existence of my disabilities, as if they were a cultural debate or chimerical phenomena, and they use pseudo-religious language, sometimes telling me about their journeys from “unbeliever” to “believer.” The visibly disabled — on the other hand — were seen as objects of natural cruelty or natural selection through an evolutionist type mentality — in which the strong survived and the weak were callously eliminated, dividing medical professionals into interventionists and the disinterested. The movement fractured into pieces that sometimes worked against each other. While the visibly disabled struggled to overcome the visual symbolism of the inspirational supercrip, the invisibly disabled fought against metaphorical interpretations that portrayed them as hysterical, imaginary, panicked, and crazy. While the visibly disabled criticized forced medicalization by doctors, the invisibly disabled battled forced metaphorization by new age poet-healers. Where one was seen as a scientific body, the stuff of lab tests and bone, the other was seen as a mythical body, the stuff of story and subjectivity. I would argue that two threads of bigotry emerged from these lines — one a form of predatory rage toward apparent disabilities, and one a form of evangelical rage toward non-apparent disabilities. Both were subsumed to a single activist platform.
By “evangelical rage,” I am not referring to hatred from religious institutions, but rather a parallel mentality — the idea that what was unseen had no parameters, and could be changed by will. Unsolicited proselytizing by healers and well-meaning folks became the norm for many of us. Poet and essayist Floyd Skloot who went public with his CFIDS struggle and was immediately bombarded by letters and phone calls suggesting he smoke nicotine, take veterinary immune modulators, and invite strangers over to show him how to use garlic suppositories, wrote: “there is a vast subpopulation of Americans who feel betrayed by the medical community and who seek one another as though they were members of a scattered tribe. Taking matters into their own hands, they are fervent in their outreach, proselytizing like evangelists while expressing their anger at failed bodies and failed expectations of the all-mighty Doctor” (The Night Side, 108).
Every outsider, like a witness by faith, could claim to intuit knowledge of invisible disability, since it was unseen. As in Christian Science, one could name oneself a “Scientist” just by uttering the title. With the invisibly disabled, the self-named scientist, not the trained scientist, could often prosper. A person might take a weekend Therapeutic Touch workshop and become a “healer” supposedly capable of treating conditions like mine that are seen as amorphous. This is how the self-empowerment stance of the disability movement sometimes backfired against some of the invisibly disabled. In a climate of self-identification, self-treatment, and self-naming, every individual can claim the right to diagnostic authority over the unseen. Those of us who don’t heal are seen as people who are not strong or spiritual enough. Caroline Fraser — who was raised in a Christian Science home that didn’t believe in seatbelts — wrote, “Christian Science — the marriage of Christianity and Science — was once in a class by itself: a religion that also claimed to be a science. Now, however, it is a half-forgotten old character at a crowded party, elbowed aside by dozens of other attractive, if wacky, nondenominational alternative-health-care faddists, herbalists, power-of-prayer healers, and peddlers of natural nostrums” (God’s Perfect Child).
In a time when healing itself has taken on spiritual airs and invisible disabilities are seen as fixable, many of the barriers to the invisibly disabled are, at the root, ideological. It sometimes seems that the politics of the visibly and invisibly disabled exist at different points of historical evolution. Eli Clare wrote, “[B]efore the 1930s and ’40s. . ., the Christian western world had encoded disability with many different meanings. Disabled people had sinned. We lacked moral strength. We were the spawn of the devil or the product of god’s will” (82). But these attitudes still swirl around the invisibly disabled. Dr. Andrew Weil — perhaps the most messianic and powerful pundit of alternative health today, explicitly stated in his book Health and Healing that “Sickness is the manifestation of evil in the body, just as health is the manifestation of holiness.” Louise Hay and Caroline Myss present the same attitudes with a suburban flair, for the woman who has not found enough reasons to hate herself.
The New Age is, itself, a religion that claims to be a science. Yet when I quote Andrew Weil’s bigoted stance to people, they often defend him, and despite his magnetic influence I was hard-pressed to find critical articles about him. He might have some good ideas, but he is also part of a dangerous religion that blames the victim. If he said Jewish people, or Mexican-Americans, embodied “the manifestation of evil,” nobody would hesitate to be outraged. Yet most people do not call this evangelical, ableist bigotry what it is.
A Reiki practitioner treated me for five sessions before telling me she believed “people choose to be sick and AIDS patients choose to die.” A chiropractor chastised me for being so “resistant” to treatment when he didn’t help me. A woman at an herb farm told me I could learn to “move past” my allergies like she did. A Yoga Journal article proclaimed that people with CFIDS are “out of touch with their natural human rhythms.” Stephen Strauss, who ran the government’s highly disdainful CFIDS program for years and was transferred to a government branch in charge of alternative medicine, stated in the New York Times that CFIDS patients “take on a series of maladaptive behaviors which sustain their illness because they become so focused and so phobic.” This old rage, a faith-based cruelty toward the invisibly disabled that grew exponentially with the influence of what one writer dubbed “Deepak Oprah,” is, in itself, based upon a strong – albeit twisted — notion of individual empowerment.
I want to close with an anecdote that conveys how a shifting or stealth disability, as opposed to a disability portrayed as more “fixed,” seems to engender a particular variety of body hatred and evangelistic rage that demands a unique response. A friend of mine with CFIDS — who is not nearly as sick as I am — wrote me at one point to tell me she had taken it upon herself to consult her psychic about my healing process and what was holding it up. “If she forgives her mother,” the psychic said. “No matter where she is, she will heal.” Now, my mother and I don’t have a perfect relationship, but it is one of the best ones I have ever seen. Plus, I didn’t solicit this advice, and told my friend I didn’t want it, but she pressed on. “Doesn’t it interest you at all,” she wrote, “that two people you know — including me –have improved after working on our emotional issues?” No, it really doesn’t, I wrote back. At this point, I wanted to get snappy and tell her that she has major intimacy issues, is totally unhappy, and doesn’t seem to have learned squat from her “illness experience.” She — a dyke — had expressed transphobic opinions in the past that offended me, especially when I was dating an MTF transsexual dyke. I had corrected her on a couple of occasions, but now brought it up to point out that I thought her bigotry against those sicker than herself had very much to do with other forms of body hatred she had expressed before. She wrote: “I’m sorry if I was offensive about transgendered people. I’ve only had one personal experience with a transsexual and it only served to strengthen my belief that I just don’t have much in common with someone who voluntarily has her body cut up. That includes people with breast implants and people who get massive tattoos. I’m a body worker and bodies are sources of wisdom and spirit for me. It’s deeply ingrained in me to want to know what’s in my body, not to try to rearrange it. I don’t think that people who muck about with their bodies are bad people. It’s just very far off my scale of anything I’d do or any person I’d want to be around.” After this terribly offensive e-mail and after realizing she wasn’t listening, I was too horrified to write back, though if I had I would have pointed out that she’s the only dyke I know who goes to a salon to have her eyebrows dyed.
Ultimately, I felt something like relief — finally we had stepped out of the pathology of what one friend of mine calls “rage smiling” — that insidious p.c. tone of forced unity in the queer and disability communities. Finally, the one constituent representing thousands had said what the others were thinking. Underneath her mucked-about pigmented eyebrows was the holier-than-thou evangelical gaze I knew so well. It had taken years for my friend to say this. But she taught me what my illness taught me — a cell can turn on another cell, even in an intact body. If we want to create a body politic in the literal sense of the world, we must admit these painful fissures and synaptic failures. We must illuminate the unseen in ourselves and others, so that we may form a comprehensive movement of liberation.
Threads of Bigotry Against the Invisibly Disabled vs. the Visibly Disabled
Invisibly Disabled –> Perceived as conceptual and continually questioned
Visibly Disabled –> Perceived as intractable, quantifiable
Invisibly Disabled –> Seen as an object of faith or belief through an almost creationist mentality — the strong-willed survive, the weak-willed suffer
Visibly Disabled –> Seen as an object of natural cruelty or natural selection through an almost evolutionist mentality — the strong survive, the weak are callously eliminated
Invisibly Disabled –> Person becomes an object of metaphor
Visibly Disabled –> Person becomes an object of visual symbolism
Invisibly Disabled –> Healing professionals divided into believers and unbelievers
Visibly Disabled –> Healing professionals divided into nterventionists and the disinterested
Invisibly Disabled –> The deception of passing
Visibly Disabled –> The deception of exceeding perceived limits
Invisibly Disabled –> Seen as: wily, whiny, asexual (contagiously untouchable), prone to hyperbole, hysterical, unspeakable and unspoken.
Visibly Disabled –> Seen as: heroic, tragic, inspirational, infantile, asexual (flawed, undesirable), freakish, disposable.
Invisibly Disabled –> The stuff of story and subjectivity, a mythical body
Visibly Disabled –> The stuff of lab tests and bone, a scientific body
Invisibly Disabled –> As in Christian Science, one names oneself a “Scientist” — the mortal body is seen as an object of perception, spiritually flawed; all truth is utterance and all utterance is hierarchical
Visibly Disabled –> The trained Scientist reins supreme; all truth is clinical and all clinical expertise is hierarchical — the mortal body is seen as experimental not experiential.
Invisibly Disabled –> Bigotry comes from belief systems and a hatred of perceived lack of backbone: it is an evangelistic rage
Visibly Disabled –> Bigotry comes from guilt and the hatred of perceived “weakness”: it is a predatory rage