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August 4 - October 14, 2017
Defective is an adjective that has long been deemed too freighted for liberal discourse, but the medical terms that have supplanted it—illness, syndrome, condition—can be almost equally pejorative in their discreet way. We often use illness to disparage a way of being, and identity to validate that same way of being.
Nature and nurture get positioned as opposing influences, when it is more often, in the science writer Matt Ridley’s phrase, “nature via nurture.” We know that environmental factors can alter the brain, and conversely, that brain chemistry and structure partly determine how much we can be affected by external influences. Much as a word exists as a sound, a set of marks on a page, and a metaphor, nature and nurture are diverse conceptual frameworks for a single set of phenomena.
Perhaps the most difficult prospect facing parents of challenged children is institutionalization: a practice that is now more euphemistically—if cumbersomely—called out-of-home placement.
Preindustrial societies were cruel to those who were different, but did not segregate them; their care was the responsibility of their families. Postindustrial societies created benevolent institutions for the disabled, who were often whisked away at the first sign of anomaly.
The disability rights movement seeks, at the most basic level, to find accommodation of difference rather than erasure of it. One of its signal successes is to understand that the interests of children, parents, and society do not necessarily coincide, and that the children are the least able to stand up for themselves. Many people with profound differences maintain that even well-run asylums, hospitals, and residences are analogous to the treatment of African-Americans under Jim Crow. Medical diagnosis is implicated in this separate-and-unequal response. Sharon Snyder and David Mitchell, both
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In his classic work Stigma, Erving Goffman argues that identity is formed when people assert pride in the thing that made them marginal, enabling them to achieve personal authenticity and political credibility. The social historian Susan Burch calls this “the irony of acculturation”: society’s attempts to assimilate a group often cause that group to become more pronounced in its singularity.
These days, if you talk about an autistic child, he differs from “typical” children, while a dwarf differs from “average” people. You are never to use the word normal, and you are certainly never to use the word abnormal. In the vast literature about disability rights, scholars stress the separation between impairment, the organic consequence of a condition, and disability, the result of social context. Being unable to move your legs, for example, is an impairment, but being unable to enter the public library is a disability.
Ability is a tyranny of the majority.
Some activists have argued against the entire Human Genome Project, maintaining that it implies the existence of a perfect genome. The Genome Project has been construed this way partly because its authors pitched it to funders as a way to cure maladies, without acknowledging that there is no universal standard of well-being. Disability advocates argue that in nature, variation is the only invariable. Donna Haraway, who teaches feminist and cultural studies, has described the project as an “act of canonization” that could be used to establish ever-narrower standards. Michel Foucault, writing
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Repairing the body and repairing entrenched social prejudice are objectives that dance a troubling waltz; either fix can have unwelcome consequences. A repaired body may have been achieved through brutal trauma and in response to unfair social pressures; a repaired prejudice can eliminate the rights that its existence had called into being. The question of what constitutes any protected difference carries enormous political weight. Disabled people are protected by fragile laws, and if they are judged to have an identity rather than an illness, they may forfeit those safeguards.
The line between cosmetic intervention—what some call “technoluxe”—and corrective procedures can be a fine one, as can the line between becoming one’s best self and conforming to oppressive social norms.
Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources.
The world is made more interesting by having every sort of person in it. That is a social vision. We should alleviate the suffering of each individual to the outer limits of our abilities. That is a humanist vision with medical overtones.
Children with horizontal identities alter your self painfully; they also illuminate it. They are receptacles for rage and joy—even for salvation. When we love them, we achieve above all else the rapture of privileging what exists over what we have merely imagined.
The existence of the implants may, therefore, take disability status from other deaf people.
But I know from personal experience how kind sympathy can be a noxious prejudice; I do not care to spend time with people who pity me for being gay, even if their sympathy reflects a generous heart
and is offered with egregious politesse.
My own observation is that some parents manufacture an affirmative construction of their child’s disability to disguise their despair, while others have a deep and genuine experience of joy in caring for disabled children, and that sometimes the first stance can generate the second.
“The immediacy and joy with which he lives his life make rapacious achievement, Harvard-style, look a lot like quiet desperation.
“Being seen in light of the ghost of who you were expected to be is a kind of emotional violence for many disabled people.”
residential facilities for adults with autism, and
The sadness of a poor prognosis is vastly easier than the chaos of no prognosis. Once the course is clear, most people can accept it. Since knowledge is power, syndromes associated with dire prospects are borne more nobly than those of which little can be understood. Identity is a function of certitude.
The most important thing, often, is a belief in something bigger than one’s own experience. The most common source of coherence is religion, but it has many other mechanisms. You can believe in God, in the human capacity for good, in justice, or simply in love. There are many chicken-egg
“Talent hits a target no one else can hit; genius hits a target no one else can see.”
Music does something to you; you don’t do something to music.”
Recent neuroscience demonstrates that the processes of creativity and psychosis map similarly in the brain, each contingent on a reduced number of dopamine D2 receptors in the thalamus. A continuum runs between the two conditions; there is no sharp line.
We help the disabled in a quest to make a more humane and better world; we might approach brilliance in the same spirit. Pity impedes the dignity of disabled people; resentment is a parallel obstacle for people with enormous talent. The pity and the resentment alike are manifestations of our fear of people who are radically different.
The profound question is whether it is worth the effort. Lucretius defined the sublime as the art of exchanging easier for more difficult pleasures, and almost two thousand years later, Schopenhauer proclaimed that the opposite of suffering is boredom.
With a myriad of perceived flaws, people have learned to find meaning in difficulty, and while the challenges of deafness or Down syndrome may overshadow the rigors of learning to like Prokofiev, the quest for meaning via exertion is not altogether dissimilar. In both cases, earned pleasures supersede passive ones.
it’s in his appetite for knowledge as the basis and the foundation of why we do what we do.”
Michel Foucault famously said of all sexual relations, “There is no difference, in principle, between sticking one’s fist into someone’s face or one’s penis into their sex.” A punch in the face is violence that employs the mechanisms of violence; rape is violence that tarnishes the apparatus of love. Rape violates the intimate, private self as well as the outer, social one. It is neither purely sexual nor purely violent; it is the humiliating expression of a power differential that aggressively unites these two motives and behaviors.
T-shirt with the lyrics LET IT BE, which seemed like a reflection of the family mood. After we ate, we watched Pete play baseball. At a change of innings, he came over and accepted hugs all around; as he returned to the field, Cora turned to me and said, “I finally have the son I always wanted.” Jennifer’s matron of honor was Annie; Marcella and Sondra were the bridesmaids. Because Marcella was still uneasy about Pete, he had agreed to arrive at the reception late, when Marcella would be free to leave. But she chose not to do so. She and Sondra drew a chalk hopscotch court in the driveway, and
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Finding a horizontal identity can be life’s greatest liberation, but it can also be crushing,
Love is not only an intuition but also a skill.
The Perry Project suggests that failing to intervene with at-risk low-income families with children under five in the United States may cost us as much as $400 billion.
Threats to gender are threats to the social order. If rules are not maintained, everything seems to be up for grabs, and Joan of Arc must go to the stake.
“Male is not gay or straight; it’s male. Neither the object of desire nor the drinking of beer nor the clenching of fists makes maleness.
It is a poverty of our language that we use the word sex to refer both to gender and to carnal acts, and from that unfortunate conflation springs much of the disgust around the notion of transgender children.
The issue is not whom they wish to be with, but whom they wish to be.
It is terrible to perform unnecessary surgery on a healthy body, but it is also terrible to deny succor to a mind that knows itself.
trades richly in nuance—sometimes at the expense of clarity, but always with an acknowledgment that among human experiences gender lies at the pinnacle of complexity.
This phenomenon may be culturally significant, but it has only a little bit in common with the people who feel they can have no authentic self in their birth gender.
Sometimes, idiosyncrasy can be a pose, membership in the smaller club of the anticlub, but often it is a marooned consciousness that occurs not because genderqueer is a cool thing to be, but because neither the duality nor the spectrum fits. Such experiences express the wide vision that lies outside of belonging.
“All we really had to figure out was how to get to the point where we were no longer self-conscious about what who he is says about who we are.”
Richards’s certainty that God did intend people to be trans the way she is trans, but not the way some other people want to be trans, suggests an intimacy with the Creator that strains credulity.
“And manhood fused with female grace / In such a sort, the child would twine / A trustful hand, unask’d, in thine, / And find his comfort in thy face.”
Anyone with an open heart should know that the world would have ended long ago without the translators who convey male and female meanings across gender’s fierce boundaries.
West. I remember one of them bursting into tears in a German supermarket that stocked twenty brands of butter because he couldn’t stomach all the decisions the West asked of him.
they demonstrated that with enough emotional discipline and affective will, one could love anyone.
Why are so many people going on TV to talk about and manifest their idiocy, their pathos, even their cruelty? Why do we embrace rich people who have stolen their fortunes? We may not be ashamed enough of what is authentically reprehensible, but we are likewise increasingly unashamed of what never should have discomfited us in the first place. The opposite of identity politics is embarrassment. We are closer than ever to the rights of life, liberty, and the pursuit of happiness. Fewer and fewer people are mortified by who they truly are.
