The Challenge of Disability
Rev. Victor Carpenter,
Senior Minister, First Unitarian Church of San Francisco
Berry Street Essay, 1991
Delivered at the Unitarian Universalist Association General Assembly
June 20, 1991
Special thanks to Catherine Carpenter for her contributions, editing expertise, and advice around specific issues of disability.
Our daughter Gracia Eames Carpenter was born in 1963. At the age of eighteen months, she was pronounced autistic. The early 1960s were bad years for parents of children labeled autistic. At that time, the medical profession (under the heavy influence of Dr. Bruno Bettelheim) believed that autism was a purely psychological disorder brought on by parental subconscious rejection of the child during early infancy.
The psychological abuse that resulted from this blame-the-victim response remains a heavy burden borne by thousands of parents to this day. A decade after her birth, the diagnosis of Gracia’s condition was changed to severe retardation. Did we feel exonerated? Hard to say. Ten years of implicit and explicit medical rebuke leave scars that never completely vanish.
Thirteen months after Gracia’s birth, our second daughter, Melissa, was born. We believed her to be normal. But slowly Melissa began to behave differently. Before she was two and a half, Melissa was diagnosed as deaf and severely language and learning disabled. At least we know the cause of Melissa’s condition: she was affected by the 1964 worldwide rubella epidemic. The cause of Gracia’s retardation remains a mystery. What is no mystery is that we are parents of two daughters with disabilities. That fact has shaped us in every imaginable way and in some ways that are unimaginable.
Before proceeding, I should speak about the vocabulary of this essay—specifically my use of the words "disability” and "disabled.” According to Webster’s unabridged dictionary, the prefix "dis” has both a primary and a secondary meaning. The primary meaning serves to indicate a separation or a parting from, as in "dismiss,” "dissuade,” "discern,” "distribute.” The secondary meaning serves to indicate an undoing, negation, a deprivation, as in "disbar,” "disown,” "disjointed.” My use of the word "disabled” is in keeping with the primary use of the prefix without buying into the negative associations of the secondary meaning.
I am aware of the recently coined euphemisms for the word "disabled,” such as "differently abled,” "other-abled,” and "physically challenged.” While these euphemisms partake of the same semantic hopefulness that transformed countries from being "undeveloped” to "underdeveloped,” then to "less developed” and finally to "developing” nations, the people of those countries continue to starve while the country goes through linguistic shifts. I subscribe to George Orwell’s judgment that "The slovenliness of our language makes it easier for us to have foolish thoughts.” It is an important corrective to bear in mind that "politically correct” terminology differs from coast to coast, from school district to school district, from therapist to therapist, while the condition of the person whose condition is being diagnosed remains unchanged.
When Gracia was born, Cathe Carpenter and I did not know that she would be the one in every thousand U.S. citizens with a severe-to-profound disability. We did not know that persons with disabilities comprise twenty percent of the population. We did not know that there are some 43 million citizens of the United States with conditions that severely impede their lives. Nor did we care. Disability had not touched us. But what we did know is that our culture—the prevailing culture of white, middle-class, Eurocentric America—had subtly and thoroughly conditioned us to react negatively and to recoil from persons with disabilities as persons "apart.”
I came to this attitude toward persons with disabilities by the most common and the most democratic route available: simply by going to the movies since the 1940s. I watched Charles Laughton as the grotesque Hunchback of Notre Dame attempt to win the love of the beautiful Maureen O’Hara and fail piteously. I watched Laura in The Glass Menagerie wait anxiously for the "gentleman caller” and heart her rebuff her mother’s hopes with the words "But mother, I’m crippled!” I watched the "miracle worker,” Anne Bancroft as Annie Sullivan, spell the word "water” into the palm of little Helen Keller. I watched Dr. Frederick Treves rescue the Elephant Man, John Merrick (billed as "the ugliest man alive” because of his neurofibromatosis), from a sideshow, only to set Merick up in a sideshow of Treves’ own making. I saw Jose Ferrer play the artist Toulouse-Lautrec and stump through the Technicolor extravaganza Moulin Rouge, justifying and excusing the view of a person with disabilities as the outsider. I even saw Ronald Reagan lose his legs (Kings Row, 1942) and speak what may be the most prophetic line of his career, "Where’s the rest of me?”
Occasionally a film presented a person with a disability in a straightforward way. Harold Russell, who lost both hands in World War II, used his hooks as instruments of tenderness rather than as weapons in the film The Best Years of Our Lives. This was the first film that dealt honestly with the fear of becoming intimate with a person with a disability. It stands out as the rare exception to the tradition established in films, plays, and novels or imagining the world of persons with disabilities as strange and dark and alien and dependent. In the vast majority of presentations of disability, the narrative focus is shifted from the person with the disability to the abled figure who is actually the film’s hero (the doctor, best buddy, wife, miracle worker, etc.) This is done so that the audience (assumed to be composed of abled people) can more readily identify with a person like themselves rather than with the character identified in the production’s title and important to the production’s advertising campaign.
The one thing that all persons with disabilities displayed in media have in common is their power to strike fear into the hearts of abled people. From the victimized woman who is deaf or blind (deaf Jane Wyman in Johnny Belinda, blind Audrey Hepburn in Wait Until Dark); from Freaks to Elephant Man (two classics of what might be called compassionate voyeurism); from Moulin Rouge to Rain Man, the character with the disability is invariably presented as "other.” We may feel pity or compassionate concern, we may even laugh and marvel at such extraordinary feats of skill as Dustin Hoffman’s autistic savant displays, but the deep-down, fundamental emotion we experience is fear.
We felt fear when we were told that our daughter Gracia was autistic. Fear for her and fear for ourselves in relationship to her. I felt the fear that every "abled” person experiences in the presence of disability. Fear is the fundamental expression of ableism, the last and most deeply embedded "ism” to attack the psyche and demean the humanity of other human beings. A newspaper columnist defined ableism as "the oppression of the differently abled by the temporarily abled.” The wit of that definition should not obscure its truth or its painful implications. Just as sexism, racism, and anti-Semitism corrupt those infected with these social viruses, so ableism diminishes the possibilities of truly human experience and denies the dream of living inclusively within the interdependent web. To be oppressed by ableism is to be excluded and demeaned by a culture that defines the human in narrow and exclusive terms.
Exclusive (as opposed to inclusive) definitions of what constitutes humanity are not unusual. They justified slavery in the nineteenth century and lynchings in the twentieth. Exclusive definitions of humanity empowered the Nazi storm trooper intent on exterminating Jews and give license to the gay basher flaunting his homophobia.
Like sexism operating in a culture in which patriarchy goes unchallenged, ableism is all but unknown to us. The overt evidences of disability being addressed (the presence of the curb cut, the ramp, the sign-language interpreter) are perceived as accommodations for "the other,” affected or enhanced by these things. If anything, they serve to reinforce our assumption that persons with disabilities have little to do with the way we live. At best, we feel self-righteous about concessions "we” have made to "them.”
For the first thirty-plus years of my life, and the first five years of my ministry, I lived in the ableist world. This world and my comfortable residence within it were shattered with the birth of our daughter Gracia. The realization that her disability was suddenly, unexpectedly, and inescapably a part of my life was a seismic trauma that still produces aftershocks. As one parent of a child born with a disability remarked, "What is supposed to be the best day of your life turns out to be like a funeral.”
I have sought to discover an analogous situation. The only experience that I can correlate in terms of its devastating and life-transforming effects comes from the period of my South African ministry during the time when racial classification was still the law of that land. Occasionally one would read the tragic story of a couple who were classified as "white” (thereby enjoying all the rights and privileges accrued to whites in South Africa) producing a brown-skinned child. The birth is reported to the authorities. Under previous South African law, the child was classified as belonging either to the "colored” or African race. All white privileges and rights were withdrawn. The couple had either to follow their child into a different racial classification or to disown the child they had produced. The shock of such life-transforming new approaches the shock that parents of a child judged to be disabled experience. The result in a society as confidently ableist as South Africa is racist is another form of racism.
For some parents the trauma begins on the day their child is born. For Cathe and me, the diagnosis was preceded by weeks and months of foreboding and questioning before a doctor finally confirmed our fears. Following his diagnosis, the advice he offered was that our daughter should be put away and forgotten. He thought he was being kind. It was a counsel of "cut your losses and move on with your lives.” It was the counsel of an ableist physician speaking to two able parents in an ethos of unchallenged and unexamined ableism.
Ableism: What It Means, How It Is Expressed
Ableism bears many general resemblances to racism. In a racist society, race plays a decisive role in determining one’s thinking and behavior. It profoundly conditions one’s interactions with persons of different races. In like manner, ableism crucially influences the non-disabled person’s interaction with someone who evidences disability. An unstated (and often unconscious) belief about the social inferiority of the person with the disability disguises bigotry. In the sixteenth century, the bishops of the Inquisition refused to look through Galileo’s telescope, insisting that they say "with the eyes of truth” that the sun travels around the stationary earth; so we who are non-disabled see with our "eyes of truth” a person with a disability. We do not recognize that we are in fact seeing only our own conditioned belief.
Consider the fact that each of us (non-disabled and disabled alike) depends upon certain technologies and adaptive equipment in order to function. In a non-disabled person, this dependence is entirely acceptable as, for instance, our dependence upon a washing machine or eye glasses. But if a person with a disability evidences dependence upon such adaptive equipment as a wheelchair, that dependence automatically sets the person apart in the thinking of those who regard themselves as independent.
Social historians are fond of pointing out that the things a society takes for granted are often more interesting than its controversies. Our beliefs about disability fall into the category of things our society takes for granted. In fact, our beliefs about disability parallel our accepted beliefs about children and childhood, beliefs that are themselves as ungrounded in historical fact as are our beliefs about disability.
In his monumental study of the social treatment of children, Philippe Aries discovered that for most of Western history, people did not perceive childhood as a distinct period of human development or one that required any kind of special treatment. The emergence in our culture of the idea of childhood is a modern phenomenon. The same can be said for disability. While it may appear obvious to us that there is a state of disability that is distinct from the predominant "typical” state of being and requires special accommodation, this too is a modern perception. The fact that both childhood and disability are relatively recent additions to our social consciousness accounts in part for the tendency to link persons who have disabilities with children and our perceptions of children. This linkage reinforces the concept that persons with disabilities are inherently dependent. Such persons are not only linked with children, they are also linked with the poor. The fact that so many of today’s street people display varying degrees of mental impairment or physical disability is simply the latest chapter in the long relationship between a person with disability and a mendicant.
Like poverty, disability is a social construction and not a medical diagnosis. "Disability” comes to us not from treatment clinics or therapeutic facilities, but from legislative enactments—particularly from eighteenth- and nineteenth-century English laws governing vagrancy, poverty, and begging.
At first glance, the relationship between vagrancy and disability may appear remote. I invite your study of poor-relief legislation, both in England and in this country. There we discover important similarities. Vagrancy and disability are both "unstable conditions.” Vagrants are literally "on the move” and may at any time shift back and forth between some steady employment and wandering. By the same token, a person with a disability is also "on the move” as his or her condition improves or deteriorates and as his or her ability to move in and out of non-disabled roles and employment changes. The point at which these two conditions, vagrancy and disability, most obviously connect is around the supply of poor relief. How do you distinguish the needy beggar from the person who is faking a disability?
There are published stories from as remote a time as the fifth century before the Christian era that tell of people faking illness and disability in order to avoid service in the armed forces or other social obligations. The literature of England and France contains innumerable descriptions of beggars pretending to be crippled and blind, artfully producing counterfeit sores and lesions, lacerating themselves, and feigning epileptic fits and leprosy. Women in poverty were reported to "borrow” blind children and exploit them. Gangs of beggars purchased children from orphanages and deliberately maimed or deformed them for the purpose of encouraging a flow of alms from sympathetic observers. Regardless of the truth of these reports or the actual extent of these practices, they convey a social truth in the sense that official believed that faking disability posed a significant problem for providing relief. Is it coincidence that epilepsy and developmental disabilities are two of the least-served categories in the social service system?
Over time, the strong association between disability and deception has acquired another and more disturbing implication: it challenges people’s confidence that they can know the truth. As social mobility increased during the nineteenth and twentieth centuries, personal contact with strangers increased as well. The presence of strangers lowered confidence that a person could know and understand another person. A small and intimate circle of known friends and neighbors gave way to a world of unknown persons with different attitudes, customs, ways of doing, and ways of being.
As knowledge of each other declines, our willingness to accommodate unusual behavior in others gives way to a suspicion and distrust of persons whose characteristics are perceived as strange or bizarre. The boundaries between the real and the fake blur to indistinction—the truth and the individual’s confidence in his or her ability to know it are seriously undermined. A social pathology is the result.
In this new social context marked by fear, suspicion, and confusion, society attempted to create a structure for administrating aid to the "deserving poor.” There are well-documented histories of the success and failure of these administrative attempts to provide welfare stretching from the eighteenth and nineteenth centuries into our own time. The workability of these laws and the impact of their passage are treated in the novels of Charles Dickens, where we are given a picture of the workhouse in England’s Victorian period. The workhouse was seen as providing and remedy to the problem of giving aid to the needy and work to the person able to perform it. In our own time, John Updike’s early novel The Poorhouse Fair is a twentieth-century American successor to the grim realities of Dickens’ London. And a variety of novels documenting the conditions extant in institutions reserved for the "disturbed” and the "deranged” in our own country made Americans conscious that these snake pits (reserved for the "unfit”) were as inhuman as anything that Dickens could have imagined. There is a direct progression from the workhouse to the poorhouse to the madhouse! Separations, suspicion, segregation!
Gracia, our young adult daughter, pushes a shopping cart down a crowded supermarket aisle independently. This is a difficult task for her, emotionally and physically. I walk with her, feeling proud of her emergent accomplishment. Suddenly her cart veers and bumps the cart of another shopper who turns, looks, and loudly demands, "What’s wrong with her!” My pride collapses. I retort, "There’s nothing wrong with her. What’s wrong with you?” Gracia’s accomplishments are measured on a different scale from the prevailing social norm. But this does not contradict her inherent worth, interdependence, or the fact that she and we are inextricably bound together in community. Recognition of and pride in the smallest accomplishments of another human are the mortar of a healthy society.
But in an individualist society, to fail to be self-sufficient (i.e., able) is an abomination. Individualism and independence go hand in hand. According to the ideology of ableism, to be an individual is to be independent, i.e., self-sufficient. The facts that independence does not truly reflect anyone’s reality and that as a species we are utterly and emphatically interdependent go virtually unnoticed in the larger society—so pervasive is the ideology of ableism. Most of us who are non-disabled are unmindful of the vast numbers of people upon whom we are continually dependent for our daily survival.
Those of us who are able to purchase the goods and services that we need become models of highly valued individualism and thereby provide the yardstick by which those who are less affluent (and thus less independent) must measure their success or failure. This is the ideology of ableism acted out in the context of a capitalist economic system.
In such a context, the stigma (and it is a stigma) of dependence, i.e., inferiority, is all but inescapable for persons with disabilities. The needs we expect to have fulfilled as a matter of course become luxuries for the person with a disability. Access to medical care, freedom of movement, and employment are perceived not as rights but as extraordinary privileges. Persons with a disability are expected to be grateful to our society when and if they are granted these ordinary rights.
Our individualism is predicated on social productivity, which is translated into economic productivity. To produce is to be recognized as a valuable human being. Not to produce (nor to have any possible future as a "productive” member of society) is to forfeit recognition as having human worth.
Gracia does not produce anything. A more extreme case: Several years ago, a sixteen-year-old boy, who had resided in a Massachusetts pediatric nursing home since an accident at age four, was described for a court hearing by the medical director of the pediatric nursing home as in a semi-vegetative state. The pediatric-staff education personnel argued that if a person has potential for improved quality of life, he or she has an equal right to the education services provided by law to all special-education children.
My wife, Catherine Carpenter, as education consultant to the nursing facility, submitted testimony to the court on the child’s behalf and established an educational light-sound stimulation program for the youngster. The legal officer for the court determined that the town had to pay for a one-year placement of the boy in the nursing home’s educational program, during which time an independent team would monitor his progress; following the period, the court would determine the boy’s right to educational programming. The town refused to accept the determination and the case proceeded to the Massachusetts District Court of Appeals.
A concurrent New Hampshire federal district court case concerning a deaf-blind, multi-handicapped child of similar circumstances went from that court to the U.S. First Circuit Court of Appeals; the Weston, Massachusetts case waited for the results. The federal Court of Appeals voted unanimously to uphold the child’s mandated right to education (as stated in PL 94-142), further stating that a child does not have to prove benefit in order to receive public education.
The United States Supreme Court refused without comment to reopen the case, thereby giving tacit approval to the federal circuit court judgment. It was the right judgment at the right time, superbly argued by Judge Hugh Bownes. It was a judgment based on the value of one’s innate humanity rather than productivity.
The recent passage of the 1990 Americans with Disabilities Act, which provides persons with disabilities equal access to goods and services, may be the waning crest of a wave of social liberalism in this country. Ableism continues to exert its power.
How Did This State of Affairs Come About?
If there is a patron saint (or designated villain) of ableism, it is probably the Reverend John Calvin, fundamental architect of Protestant individuality and individualism. Within Calvin’s framework, problems relating to the distribution of goods and services could be attributed to divine will. Poverty and ill fortune no less than disease or disability were perceived as signs of a fall from divine favor. The doctrine of predestination was given a pseudoscientific spin with the addition of certain biological determinants. Those who were "fit” (i.e., able, health, sound in mind and body) were obviously thriving and thus were certainly to be numbered among the elect; those less fortunate in their physical or mental endowments were labeled "unfit.” Their lack of ability indicated their place in the divine plan. Biology was (and in many cases still is) destiny.
The influence of John Calvin is alive and well in our society. Nowhere is his influence more apparent than in government policy toward persons with disabilities. When "nature” produces a person with a disability within a family, that family’s "natural” inferiority must be all the more obvious to the government policymaker, even though he (and it usually is "he”) may be quite unconscious of this bias.
The phrase "biological determinism” means that individuals’ personalities and capabilities are fundamentally and inevitably determined by their biological appearance and/or generic characteristics. Biological determinism is Calvin in a lab coat! This doctrine is well established in our pantheon of social myths. At one time or another, science has excused, justified, or provided the apologia for discrimination against women, persons of color, lesbians, gay men, the elderly. Much of what heretofore has been branded as "natural” or "biologically based” has been exposed and exploded as a conscious effort to create a socially controlling myth. The legacy of such myths exerts a powerful hold upon our imaginations and finds expression in our social policies and our prejudicial attitudes. The beliefs that pregnant women should not be seen in public or that married women could not be employed as school teachers seem quaint to us; in distancing ourselves from such norms, we are able to ignore the social destructiveness of the comparable prejudice that results from biological determinism. Ableism is one more manifestation of this noxious doctrine elevated to the level of social ideology.
Like racism, sexism, and all the other isms, ableism provides a worldview based upon the denial of humanity to those persons with disabilities. Those who do not conform to its tenets are zeroed out of the club. Ableism invokes the power of medical science and social legislation to determine who qualifies as truly able and who does not. Those who are judged disabled are dealt with in a variety of ways. At various times in history, such persons have been consigned to hospitals, rest homes, freak shows, circuses, attics, cellars, closets, asylums, madhouses, long-term residential facilities, sheltered workshops, prisons. Such locales were perceived as the natural environments to which ha person with a disability was best suited. These ableist responses were and continue to be accompanied by useful pseudo-justifications (myths): that persons with disabilities are feeble, unnatural, beastlike, asexual, oversexed, violent, hostile, unclean, and inherently evil. These responses are not those of some primitive period in the dawn of human history. They continue in our time and provoke the frustrated anger of those who attempt to confront ableism. Josh Greenfield, attempting to find a place for his own autistic grown son Noah gave vent to his own fury:
I said that I wanted him to live in conditions no worse than those of normal people. That I wanted him to get as much happiness as possible out of life. That he was as capable of pain and pleasure as other people, even if on a more primordial level.
The arrogance of some of us to value some lives above others, to reward some people more for the tasks they perform than other. Capitalism, at base, is a very immoral system. Any system that leaves no room for Noahs. Until we can actually come up with a way of dealing with Noah, we cannot pride ourselves on a moral superiority. Because we are not moral. We treat those who seem like less as far less.
Ableism in the nineteenth and early twentieth centuries regards the presence of persons with disability as a problem for society but not a socially constructed problem. As in the past, solutions continue to be directed toward individuals and neglect the wider social context out of which the social construction grows. The assumption was (and to a large degree still is) that if you can fix (i.e., rehabilitate) the individual with the particular problem, then the problem disappears. And if you cannot fix/rehabilitate the individual with the problem, you dispose of the problem by eliminating the individual.
It was from this perspective that the eugenicists engaged in experiments that were essentially genocidal. They sought to improve the quality of the human gene pool by preventing the birth of infants with disabilities. Numerous studies were conducted to document the genetic nature of diabetes, blindness, deafness, and epilepsy; social behaviors considered "deviant,” such as poverty, prostitution, and criminality, were included in these studies. The Nazis were eager students of the early studies in eugenics. Persons with disabilities (beginning with the deaf) led the gypsies, homosexual persons, and Jews into the gas chambers.
The Nazis were not and are not the only people to be beguiled by the suggestions of the early eugenicists. In the United States for decades, sterilization has been overly or covertly forced on poor women. Twenty-seven states currently provide for the sterilization of mentally retarded women. Coercion of many kinds has been used to lead blind, deaf, deaf-blind, "third world,” and poor women (or their legal guardians) to accept sterilization. Genetic counseling has been used on prospective parents with "questionable” backgrounds to dissuade them from having children. Despite the fact that evolution does not operate on an individual level and despite the fact that most physical and emotional conditions are not inheritable, the intensive search continues for scientific documentation of genetically transmitted deviance.
North Dakota was the first state to refuse marriage to persons labeled mentally ill. Indiana was the first state to pass a law that mentally ill or insane persons must be sterilized. These were early American responses to eugenics work. By 1939, twenty-eight states had a compulsory sterilization law and 30,000 Americans had been forcibly sterilized.
The racial hygiene doctrine of the Nazi regime came out of U.S. and European eugenics research and legal actions. Within the first year, 1,700 Nazi genetic courts were set up and 56,000 Germans were sterilized. Within ten years, 400,000 Germans were sterilized as a result of this court process. All who wished to marry required an examination, ant those discovered to have genetic defects were not allowed to marry. By 1935, the marriage ban was extended to include racial intermarriage. The financial cost of mental and physical disabilities to the state was a prime reason given for forced sterilization, and the idea of racial purity grew out of this.
Prenatal diagnosis (which the early eugenicists sought to discover) is now praised as a miracle of modern medicine. The dark side of this bright miracle is that it harbors the possibility of the approaching day when only children who are "healthy” (i.e., productive as a society defines productivity) are permitted to be born. As a spokesperson for an action group of persons with disabilities commented when she addressed a gathering on the topic of disability rights, "If amniocentesis had been available to my mother, I would not be speaking to you today.”
Many of us are familiar with what came to be known as the Baby Jane Doe case, which received much publicity in the early 1980s. It concerned a child born with spina bifida. Spina bifida, a defect in which there is an open cleft in the spinal column, occurs in about one in one thousand live births. If the lesion is not repaired by surgery immediately after birth, it provides opportunity for hydrocephalus (an abnormal amount of fluid in the cranial cavity) and infection that can lead to permanent brain damage or death. The results of in-utero amniocentesis tests were known to Baby Jane’s parents and a grave prognosis was rendered. They chose not to abort the fetus. They also chose "conservative treatment: (no surgery) after the baby’s birth. The federal government brought suit for aggressive (surgical) treatment—and lost. It is to the credit of our system that Baby Jane Doe, a child who was known to have a significant physical disability in utero, was permitted to be born and that her subsequent treatment remains a choice to be made within our social framework, despite the discomfort of various disability-rights groups and pro-life advocates. In 1990, Keri-Lynn (Baby Jane Doe), who attends a special-education class, was described as unable to walk but without pain, socially responsive, and of low normal intelligence.
I must confess that if we had suspected that either Gracia or Melissa was significantly disabled in utero, Cathe and I would have seriously considered abortion. The pro-life arguments that every conceived human life is of ultimate value is too often a hideous contradiction when proclaimed in the context of an ableist society, despite the apparent well-being of Keri-Lynn. Ant that is the society into which our daughters were born. Unlike the parents of Baby Jane Doe, I do not think that we would have chosen to go such a painful way. The fact that Gracia and Melissa were born initiated us not only into the cruelty imposed upon persons with disabilities but it also introduced us to an honesty about ourselves and our limits. We became newly aware of our own compulsive fears about being vulnerable in a society that values only competence and ability.
The conflict of disability and competence is mirrored in our younger child, Melissa, who is deaf and has severe learning disabilities. She is also a professional ballet dancer—a member of the corps de ballet of the prestigious San Francisco Ballet Company. In an interview, the director of the ballet company spoke of Melissa as an example of what a human being is capable of accomplishing. It would seem to be a case of overcoming disability, attaining competence, and thus entering the society of the abled, a scenario beloved by the producers of melodrama. But Melissa will never be "cured.” Her disability remains the central element of her daily life. She recognizes that her disability places her in a vulnerable position in this society. Every day she passes homeless persons begging on the streets of the city in which she lives. She knows that they are there as a result of their failure to produce. Should she fail to "produce” (i.e., dance), would her disability place her in their company? This is her fear, a fear that is constantly with her. She is in constant conflict as one who possesses a prized accomplishment and as one who is also continually at risk.
Melissa is dysphasic: her expressive and receptive language ability, in both sign and English modes, is limited. She is often frustrated and confused by both verbal and signed languages but uses them to mediate her daily life as best she can. Reflecting upon Melissa’s disability has led me to a deep awareness of our social dependence upon language. Words give life to things. In the beginning is the word. The consequences of that statement resonate across centuries. Let me provide one dramatic example.
In the fifteenth century, Robert Campion created the Merode altar-piece. It depicts the Virgin seated in front of a fireplace. To her right is the angel Gabriel. Behind the angel, through a circular window, shine several beams of light. Sliding down the central beam is a Christ Child, who must be about two inches long; he bears a tiny cross and is headed straight for the Virgin’s ear. Through this biologically anomalous passage he will enter her womb.
The Merode altarpiece, now on view at The Cloisters in New York, is world famous for the exquisite intricacy of its symbolism, most of which, naturally, relates to the ideas of virginity, incarnation, and redemption in classic Christian terms. At first sight, the idea of ear insemination is amusing, but it works theologically in quite an orthodox way: the Word enters by the organ of hearing, the Word gives life.
Such theology has had a profound (and in many ways positive) impact upon Western culture; but in its reinforcement of ableist notions, it has been disastrous. In this instance it concerns our attitudes toward the deaf.
The association between language and oral/aural channels of communication is virtually indelible. It is so close, in fact, that a language that does not depend upon oral communication, American Sign Language, has been denied legitimacy as a language. One university went so far as to judge that it is not a language at all but merely a secondary communication skill—like typing.
Every modern work on the subject shows that American Sign Language developed independently from English. It has its own grammar and vocabulary. Half a million people in this country and Canada claim American Sign Language as their native language. No matter. In an ableist society, the Word (with a capital W) and the words remain the property of the hearing.
In his novel The Crying of Lot 49, author Thomas Pynchon describes the quest of Oedipa Maas, who discovers a secret world of the dispossessed, a surreptitious body of exiles linked by an enigmatic postal system. The deaf are rather in that position. You don’t see them unless you look for them. But once you do, you discover that there are a lot of people out there communicating by means of which an able person in an ableist society has little or no knowledge.
In my struggle to come to terms with my daughters’ disabilities, I have sought guidance from those who have been able to break free of society’s imprisoning ableism, persons who are able to transcend its constrictions and artificial limitations and to inform us of the truth of a larger humanity. In this regard, I am moved by the writing of Flannery O’Connor, herself disabled with lupus, a serious systemic disease, and by the photographs of Diane Arbus. Arbus spent much of her life taking pictures of persons with disabilities. Those photographs confront. We study a photograph of a retarded girl in an oversized dress holding a hat on her head as she looks curiously and directly at the camera. We see our own vulnerability. In such a photograph we are known. Our creatureliness is unmasked and without illusion. It both fascinates and disturbs us. Arbus writes, "There is a quality of legend about ‘freaks.’ Like a person who stops you and demands that you answer a riddle.
Flannery O’Connor’s novels confront us with demanding riddles. In the opening passages of Wise Blood, the young hero, Hazel Motes, challenges a stranger sitting across from him on a train by saying, "I reckon you think you been redeemed,” Hazel is an atheist of impregnable skepticism. He founds the Church Without Christ, where "the blind don’t see, the lame don’t walk, and the dead stay that way.” But don’t be fooled. It’s overcompensation. Hazel’s ruling passion is not atheism but his obsession to rid his consciousness of what O’Connor describes as "the ragged figure who moves from tree to tree in the back of his mind.”
Persons with disabilities are stand-ins for that "ragged figure.” They remind us of what was once called the via negativa, the discovery of God’s presence in brokenness, weakness, vulnerability. They confront us with our own compulsive fears of being broken and vulnerable in an ableist society that values only competence. We would be rid of them.
I would be rid of the disabilities that distort my daughters’ lives and challenge my own. I would never have chosen them or the ways in which they have led me. I do not believe that Gracia and Melissa’s disabilities were sent to test them or to strengthen me. I reject that notion that the world is some sort of moral gymnasium constructed to tone our spiritual muscles. But I confess that the via negativa presented to me by my daughters has led me to acknowledge the action of grace, which rarely comes in the shape of a gentle invitation by more often appears in the form of an assault, something from which we would prefer to flee.
This is the essential prophetic experience: consider Jonah and Jeremiah. The prophetic figure disturbs us into accepting our condition—broken, weak and vulnerable. Not gentle suggestion but harsh probing moves us to accept our condition, a harshness that leads to healing. O’Connor understands the truth that one’s spiritual life is seldom a matter of painless, uninterrupted growth. By confronting the pain in others we gain access to the infirmity within each of us.
Our culture rejects infirmity. It substitutes the glamorous fiction for the grotesque fact. Our definitions of the human rule out bizarre and broken forms. People dying of cancer possess little of the power that we assume to be the principal attributes of human worth. If we define the person exclusively in terms of rational ability and productivity, someone with Down’s syndrome will inevitably appear to be less than whole. Persons who are eccentric, ugly, abnormal are placed beyond the measure of our social comfort zones. We are left with a limited, truncated humanity, dangerously imagining itself complete. Persons with disabilities teach us that we encounter wholeness only when we recognize our poverty and not our capacity. Persons with disabilities invite us to accept ourselves and each other, to be no more (and no less) than we are created to be.
In her essay "Beauty: When the Other Dancer Is the Self,” Alice Walker recalls a childhood accident that resulted in the blinding and disfiguring of one eye and the pain the blind eyeball’s discoloration gave her both socially and emotionally. From the time of her daughter’s birth, Walker dreaded the child’s discovery that her mother’s eyes were different from other people’s eyes. Each day her infant daughter watched a TV program called "Big Blue Marble,” which began with the picture of the earth as it appears from the moon. It is bluish, a little battered looking, but full of light, with whitish clouds swirling around it. Walker recalls the day she put her daughter, Rebecca, down for her nap and the child suddenly focused on the eye. Walker cringed inside. She writes, "All children are cruel about physical experiences and I assume Rebecca will be the same.”
But noooo. Rebecca studies my face intently. She even holds my face between her hands and says, as if it may just possibly have slipped my attention, "Mommy there’s a world in your eye!” (As in "Don’t be alarmed or do anything crazy.”) And then gently, but with great interest, "Mommy, where did you get that world in your eye?”
Alice Walker runs to the bathroom and looks in the mirror. "Yes, I realized, there is a world in my eye. And I saw that it was possible to love it; that, in fact, for all it had taught me of shame and anger and inner vision, I did love it.
Because our daughter Melissa is both a person with a disability and a member of a prestigious dance company, she attracts media interest. "Perseverance Triumphs Over Adversity” is the prevailing sentiment of these articles and television spots. The fact that Melissa’s struggle is ongoing is largely ignored by the authors and producers. Although they distort and grossly simplify Melissa’s circumstances, this media attention occasionally produces unexpected and deeply heartening resonances from the wider community.
One article, titled "Breaking the Sound Barrier,” was shared by a public school teacher with a class of twenty-two teenagers. He wrote to Melissa:
This article has been folded and unfolded close to 100 times this semester, Melissa. It has been read silently and aloud; it has been dissected several different ways to show the similarity of you and others; it has been met with discussion that has evoked feelings of jealousy, inferiority, disbelief, the joy of hope, motivation, tears of vulnerability, anxiety, frustration, and incentive…but never apathy.
"What is he talking about?” you must be saying to yourself at this time. So let me take a moment and explain. As a speech therapist I’m involved in a hospital, home health, and the public schools. This past school year I was given three alternative high schools to serve. These schools are small with a population of students who couldn’t adjust to the regular setting. They are the "problem students” that nobody wanted.
The first semester was enjoyable. The students and I got along with each other and accomplished the goals set, and yet there was something missing. The impetus and persistence to follow through with any task big or small without someone over their shoulder was that missing ingredient. It was self-perpetuating, it made most of them feel like "losers,” and it provided them with an opportunity to say: "Feel sorry for me,” as well as shirking responsibility and saying, "It’s everybody else’s fault, not mine.” It’s an easy trap to fall into and it happens to all of us at one time or another.
Enter the article about Melissa Carpenter entitled "Breaking the Sound Barrier.” For twenty-two teenagers it didn’t just touch their lives, it made an impact. Like LaJuan: police record for selling drugs and theft, compulsive liar, and all-around bully. He now volunteers at a Tenderloin day care center after school and from what I hear the children adore him. Like Brennan: frequent seizure activity has left him with slurred speech, poor judgment, and reduced memory. On his own he found a summer job at University of California hospital. Like Teresa: gangs, fights, abusive parents, and anger toward everyone. She decided to share her "secret” drawings and poetry with her case worker who in turn has opened up doors to her that were previously unknown or locked. I could go on, some stories more dramatic than others, but all with positive changes. Some may say, "So what…no big deal,” but you know as well as anyone that life often needs to be approached inch by inch, one day at a time. There were no flashes of light or Superman leaps; it took months to gather the courage to do what each did. But they’ve all given themselves an opportunity to improve the quality of their life, and ultimately the lives of those around them.
Your dedication is paying off in more ways than you probably realized, Melissa.
On one level, this anecdote can be dismissed as simply another instance of success inspired by luck, pluck, and individualism. It’s readily contradictable from the standpoint that Melissa works and resides in an essentially white, able, middle-class society and has the support of white, able, middle-class parents dedicated to assisting her achievement. A far cry from the social rejects who were meant to be inspired by her example.
I believe there is another dimension to the tale. In relating Melissa’s story to his students, this Unitarian Universalist teacher recognized a ministry to be performed in the world. Had he been operating from an orthodox Christian perspective, his rationale for sharing Melissa’s story would have been to inspire (and save) the individual souls of his students. From a UU perspective, his letter speaks of a teacher who has grasped the concept of how we become connecting and covenanting agents between worlds. He grasped the fundamental issue: inclusivity. Our world includes all of us, but it takes a conscious effort to let each other in. There is something in the human psyche that would separate, divide, and exclude, that is quick to judge what cannot be done rather than thinking creatively about what can be achieved.
One of my parishioners, Lucile Lockhart, herself a person with a disability and a member of the San Francisco Commission on Human Rights, wrote this challenge: "Who defines the capacity or potential of a person with a disability? Who should define it? Who should decide what priority is assigned to expenditures which will enable a person to pursue their goals? What we must attend to is not the specifics of disability but the integrity of personhood—the awarding of due respect.”
An ableist society sees only the specifics of disability. For example, no special education vocational rehabilitation program would encourage Melissa to aspire to ballet dancing as a vocational goal. My parishioner speaks for persons with disabilities everywhere when she says, "People prefer identifying my needs rather than fulfilling the needs that I seek to have met.”
In July 1990, the American with Disabilities Act was signed into law. Unfortunately, the Act is generally perceived as a form of charity. It could and should be viewed as the opening signal urging social expenditures on human services rather than on military extravagance. In its spending for armaments, my government prefers to identify my needs rather than fulfill the needs that I seek to have met! I share the anger of Lucile Lockhart at such displays of the arrogance of power.
Our Unitarian Universalist Association’s response to the Americans with Disabilities Act has been to ignore it. There has been no action taken at either our national board level or in the form of a general resolution. And yet the situation is not without possibilities. In the words of UUA Vice President Kay Montgomery, "In a group as politicized as we are, more happens when there is an active lobby.”
An active lobby is the product of a critical mass. That critical mass is only now beginning to emerge within Unitarian Universalism. Why only now? My personal history involving disability can help to explain the tardy response that persons with disabilities, in the grip of an ableist culture, have suffered.
I came late to this issue. Even my involvement on a personal level for the past twenty-seven years has not immunized me from my own ablest perspective. When we returned to the U.S. from South Africa and I took up ministry at the First Unitarian Church of Philadelphia in 1968, we were wounded and struggling with Gracia and Melissa’s disabilities. Our daughters needed continued and diverse therapies, and we needed clarity about our roles in relationship to them.
Melissa’s use of sign language prompted us to examine the meaning of this language and to introduce sign language into the adult worship services. We designed some of those services to address aspects of disability. Signing continued during my ministry but was abandoned after our departure from Philadelphia. It had been included because I had sponsored a sign-language interpreter and subject of disability was a personal issue for me. I had failed to communicate its significance as a community issue. Therefore, it simply had not taken root in the congregational soil. This judgment should not reflect negatively upon the community that provided me and all the members of my family with personal love and institutional support. Rather, it is tendered here as an example that disability addressed on a personal basis does not automatically translate into an issue of access and social justice in a congregation’s thinking.
I am gratified that the Arlington Street Church in Boston continues the monthly service of a sign-language interpreter. That is one instance of a personal issue evolving to become an access/community issue. However, attempts to address other issues of disability access at the Arlington Street Church were both more demanding and more frustrating. That venerable nineteenth-century structure, occupying its special place in our UU historical consciousness, is, in fact, an architectural monument to ableist insensitivity to the needs of persons with disabilities, something the congregation continues to struggle to address.
During the week of my candidacy for the position of senior minister in San Francisco, a member of that congregation confronted me, contending that wheelchair access to the San Francisco sanctuary (then only accessibly by entry through the church’s kitchen door) was a disgrace and demanded to know what I intended to do about it! Not only was this the first time an issue of wheelchair access (or any other kind of access) had been brought to my attention as a parish concern, but the comments seemed disproportionate when ease of access to San Francisco was compared to that of the Arlington Street Church. When I confessed my confusion to a colleague, he put his arm around my shoulder and said, "Vic, you’ve got to realize that you’re in California now. Out here access is a front-burner issue!”
The image of front and back burners troubles me. It implies that access issues are in competition with other social justice issues. It implies that there are not enough burners to go around and that one group’s rights must be pitted against another group’s rights in order to receive effective attention. But human rights are indivisible. An injury to one is an injury to all and a victory for one is a victory for all. So access is a legitimate issue in its own right, not as hot or cold and not as ableist charity but as an integral part of the social rights we are called to witness and address in our congregations.
During my ministry to the Arlington Street Church, Gracia moved to a residence for persons with severe disabilities located near Boston. She continued to participate occasionally in various church activities and functions. Although her participation was limited, she was included—known, accepted, welcomed, and valued as a member of that community. And in her own marginally functioning way, Gracia knew she was included.
The occasion was an all-church retreat. We gathered at the tables for supper. Gracia, sitting with us, stretched her hands to her mother and to me in the posture that accompanies our brief and simple family grace at home. The gesture was entirely spontaneous. Gracia’s hand signal was not a gesture she automatically made nor was the saying of grace an activity at her residence. She had never signaled for grace at any restaurants with us; the gesture was reserved for family occasions. It was obvious to us that Gracia gestured for a grace because she felt that the occasion of the all-church retreat warranted it. She was with family.
On that occasion a member of the Arlington Street Church had designed personalized T-shirts for the children of the religious education program. Each child had a decorated shirt with his or her name on it. Gracia also received a shirt bearing her name and the message "Miracles Still Happen.” It’s the right message for her and for us. The miracle is inclusivity. The miracle happens when we answer the question "Who is welcome here?” with the simple, open affirmation "You are!” and move beyond the word to the deed that actually does include the person with the disability. More than the ramp, the sign-language interpreter, the Braille hymnal, the scent-exclusive areas for the environmentally sensitive, the wheelchair-accessible bathroom, and the devices to assist hearing we need the willingness to move out of our personal ablest comfort zones to include others. When we have the courage to feel, say, and project "You are welcome” unconditionally, we will have taken a major step toward confronting the evils of our ableism, and we will feel our power. Connie Martinez, vice president of Capital People First, who describes herself as mentally retarded, has inspired persons with developmental disabilities to feel their power with confidence and a sense of self-worth.
Connie Martinez puts it this way:
If you ever see a movie about My Left Foot, he wrote a poem, don’t judge me because I’m crooked, don’t judge me because I can’t speak the way you do, or I can’t stand up, but I have a pain and I have a dream. If I find my wings I could fly and reach my goal, the rainbow. And what I’m saying is if I had a wing, in my spirit, I want all my people to be on my wings and look at the rainbow. And this can never stop, and don’t let anyone stop you to believe you cannot. There’s a rainbow in each of us, a rainbow of love, a rainbow of dream. I’m short, but my spirit is giant. And this giant is telling me there’s nothing impossible for you to reach.
We Unitarian Universalists proclaim our search for truth. My experience tells me, however, that truth searches for us, confronts us, demands of us and holds us like the angel wrestling until dawn, until we are honest with it and with ourselves. I chose to address you on this issue because the truth of disability (manifested in our daughters’ and our experience) wrestled me. In my theology, God does not award bonus points for disabilities or reward those who speak about them. But in the vast scheme of things we have each other and our compassion for one another. Every human being is the incarnation of the holy; we all have the potential to live that holiness. So be it.
 Victor Carpenter, "In the Company of the Disabled,” Stations of the Spirit (Carmel, California: Sunflower Ink, 1989).
 Deborah A. Stone, The Disabled State (Philadelphia: Temple University Press, 1984).
 Robin Simons, After the Tears (New York: Harcourt Brace Jovanovich, Inc., 1985), 5.
 Robert Bogdan and Douglas Biklen, "Handicapism,” Social Policy (March/April 1977).
 Christopher C. v. Weston, Massachusetts School District: Hearing Officer Reise Erlichman Decision (Fall 1987).
 Timothy W. v. Rochester, New Hampshire School District (U.S. Court of Appeals for the First Circuit, No. 88-1847, May 24, 1989).
 Josh Greenfield, A Client Called Noah (New York: Henry Hold & Co., 1986), 205.
 Nat Hentoff, "Whatever Happened to Baby Jane Doe?” Washington Post (December 11, 1990).
 Alice Walker, "Beauty: When the Other Dancer Is the Self,” The Black Woman’s Health Book, Evelyn C. White, ed. (Seattle: The Seal Press, 1990), 286.
 Personal communication.
 Connie Martinez, "Harmony: Voices for a Just Future,” Activists with Disability 3:2 (1990).