The term “disability” refers to a wide variety of conditions, including blindness, deafness, mental retardation, and mobility impairments. Some health professionals also consider the term to encompass learning disabilities, mental illnesses such as autism, and chronic or long-term illnesses such as epilepsy, diabetes, cancer, or AIDS. Depending on which disabilities are included, estimates of the number of disabled Americans range from 35 million to 43 million. In his 1993 book No Pity: People with Disabilities Forging a New Civil Rights Movement, Joseph P. Shapiro notes that “there are some 30 million African-Americans. So, even at the lowest estimate [of 35 million], disabled people could be considered the nation’s largest minority.”
People who have disabilities face problems stemming from their physical or mental impairments. Someone with mental retardation, for example, may have difficulty learning how to read or handle money, while individuals with cerebral palsy may need assistance in dressing themselves. However, people with disabilities must also deal with obstacles that are manmade or that arise from discrimination against the disabled. For instance, a person who uses a wheelchair may be unable to navigate the grocery store because the checkout aisles are too narrow or too high. Store clerks may refuse to assist a blind person with finding an item or may regularly overcharge mentally retarded customers. Since the mid-1960s, a growing number of activists have sought to overcome such limitations by enforcing legislation that protects the rights of people with disabilities and by changing negative public attitudes about the disabled.
While few would argue that these goals are misguided, critics do contend that the disability-rights movement sometimes goes too far in its efforts to erase the stigma around disability. One of the most heated debates between researchers and disability-rights activists is whether disabilities should be viewed as medical problems to be corrected or as normal physical variations among humans. This disagreement can be illustrated by the controversy surrounding cochlear implants for the deaf.
A cochlear implant is an electronic device that partially replaces the function of a defective cochlea, the organ in the inner ear that sends signals to the auditory nerve. The device has several components: A tiny chip is surgically implanted in the inner ear and a receiver is placed under the skin behind the ear. Wires lead to an earpiece that contains a microphone and to a digital speech processor—about the size of a cigarette pack—that is worn on the belt. The implant converts sounds into electronic signals that are picked up by the auditory nerve and transmitted to the brain. The approximation of hearing that results varies from person to person. About 20 percent of implant recipients hear well enough to understand most spoken sentences, even over the telephone. Another 20 percent receive little or no benefit at all. The majority of recipients gain some hearing but use the implant primarily as an aid to lipreading. However, additional research promises to make the surgery more successful. With improvements in the device’s design, implant researchers believe, the number of deaf people who receive significant benefits may eventually increase from 20 percent to as high as 75 percent.
Most physicians and some deaf individuals maintain that cochlear implants represent a great advancement in the search for a cure for deafness. According to the father of one child who underwent a successful implant operation, “This is a miracle of biblical proportions, making the deaf hear.” However, many members of the deaf community oppose cochlear implantation. Noting that the procedure works best for those who lost their hearing after learning to speak, opponents criticize the Food and Drug Administration’s approval of cochlear implantations in children who are born deaf. These children, they argue, are rarely able to understand the unfamiliar and often garbled sounds coming from the implant. In his book Mask of Benevolence: Disabling the Deaf Community, psychologist Harlan Lane cites studies of speech perception in which children with implants scored the same as or worse than deaf children who used hearing aids.
Furthermore, critics of cochlear implants object to the very idea that deafness is a problem that needs to be fixed. Roslyn Rosen, dean of continuing education at Gallaudet University in Washington, D.C., maintains that “most people view deafness as a pathological condition and as a problem in search of a cure. We don’t see ourselves that way. We view ourselves as people who happen to not hear, and for whom life is still very good.” Members of the deaf community point out that American Sign Language, not English, is the language they use most fluently and naturally. Along with their separate language, deaf individuals assert, they also have distinct customs and a unique culture. Many argue that the primary obstacle deaf people face is not their inability to hear but rather communication difficulties that typically arise between any two cultures that use different languages. “We consider ourselves more of a cultural group than a medical anomaly,” states Nancy Bloch, the executive director of the National Association of the Deaf. Bloch, Rosen, and others criticize the attitude that an invasive and unreliable surgery is better for deaf children than the rich cultural and linguistic heritage of the deaf. Some deaf activists have even characterized cochlear implants as genocide.
Advocates of cochlear implantation view this attitude with dismay. Although medical researchers and physicians may concede that concerns about the survival of deaf culture are valid, they argue that rejecting a potential cure for deafness is too extreme. Numerous doctors and educators contend that deaf children cannot rely on sign language alone if they are to succeed in an English-speaking world. Writing in Scientific American, John Rennie notes that parents of deaf children often choose cochlear implant surgery because they are concerned “that deaf children will be shut out of social contacts and jobs if sign language, rather than English, is their native language.” Robert Shannon, director of research at the House Ear Institute in Los Angeles, asserts,
I don’t think that even the most radical members of the deaf community would be able to make a very good case that deaf people are well integrated into society at large. They aren’t, and they cannot be, because most of our cultural interactions occur through spoken language.
Deaf children who undergo the cochlear implant surgery at an early age will stand a better chance of learning English and coping with the speaking world, Shannon and others maintain. “If there’s a way we can overcome the hearing problems that these people have,” Shannon asks, “why should we ignore it?”
Some people who are deaf or who have other disabilities are also wary about the contention that deafness is not a medical problem and should not be corrected. While these individuals may take pride in their abilities and in the deaf culture, they also welcome the possibility of regaining part or all of their hearing. “I would never want to move away from my Deaf identity,” states deaf actress and American Sign Language translator Jackie Roth. “But if I could have full hearing, without complications, I would like to have it.” In fact, reports Andrew Solomon, a contributing writer for the New York Times Magazine, many deaf people disagree with the opponents of cochlear implantation and are “righteously indignant at the thought of a politically correct group suggesting that their problems [are]n’t problems.” Others who have already undergone the cochlear implant procedure maintain that the benefits outweigh any costs. As Joanne Syrja, who had a cochlear implant performed at the age of 44, explains it,
I spoke to a person who is mobility impaired, and I said, “What do you think about all this stuff that the spokespeople for the deaf community are saying about how you’re better off just being deaf?” After all, there are many things I learned being deaf. He said to me, “Yeah, I learned a lot of stuff, too, from my handicap, but you know what? If I could walk again, I’d throw it all in a hole.”
The cochlear implant controversy involves not only questions about the effectiveness of the procedure but also the larger issue of how people with disabilities should be viewed. Many disability-rights advocates contend that the disabled are a minority group that suffers from discrimination. In their opinion, activists should concentrate on promoting acceptance of people with disabilities as valuable members of society. Other commentators argue that science should focus on eliminating disabilities entirely so that in the future no one will face the problems that having a disability can entail. The Disabled: Current Controversies examines this debate as well as other social, legal, educational, and ethical issues associated with disability.