Bruce J. Dierenfield - Disability Rights and Religious Liberty in Education: The Story behind Zobrest v. Catalina Foothills School District

PARENTING, TRAINING, AND SCHOOLING

The Zobrests Encounter Deafness

HEARING PARENTS, PARENTING A DEAF CHILD

Newborns, especially firstborns, are demanding strangers who enter their parents lives as both a joy and a puzzle because their needs are incessant but can be only imperfectly understood. When the Zobrests tell the story of their discovery of Jims deafness and its roots in group genetics, they reveal that in that knowledge there lay a key that not only explained their sons disability but also gave them a path they conceived for confronting it. Jim possessed a malady that had a medical explanation, and which, if it could not be cured, could be compensated for with the assistance of medical science.

Jims sensorineural deafness affected both of his inner ears, resulting in a profound hearing loss at the level of all finer sounds, such as spoken language, because sound could not travel from his inner ears to be processed by the brain. His deafness was not progressive, but stable over time. His middle ears were healthy and functional at processing sound waves. As a result, with the assistance of hearing aids in both ears, with which he was fitted at a very early age, he could detect a wide frequency of sounds, mostly indistinct, but including with repetitive usage over time simple, familiar words. But Jims comprehension of language would be largely independent of sound. Audiological examinations in 1985 and 1986 revealed that Jim possessed too little hearing, despite his hearing aids, to respond to even louder than normal conversation. After years of constant training in processing what sound he could detect and in speechreading (i.e., lipreading), by the time he was twelve, with visual cues provided through sign language interpretation, he could make sense of 80 to 90 percent of words in conversation.

The doctor highlighted in that casual diagnosis and prescription what would become the central concern of the new parents lives for the next two decades: Jims deafness and the training and education that overcoming his disability would require. Jims speechreading prowess, a measure of the effort to overcome his hearing impairment and integrate into the hearing majority that began at the Gertrude A. Barber Center in Eriethe school for deaf children and children with other disabilities the pediatrician referencedis testimony to that concern and the struggles that grew out of it.

For the Zobrests, a brief period of grief and confusion followed the doctors diagnosis. Sandi Zobrest recalls, When I found out Jim was deaf, I was devastated. I had so many questions and so many doubts about my ability to deal with this. For two weeks I cried and mourned for his lack of hearing.

Practical challenges asideand they are many and constantdeafness has long been stigmatized. The representations of those born profoundly hearing impaired have been negative throughout the past, and they are often deeply aversive or pervaded by pity and fear. The profoundly deaf are not only unable to hear, but often they are also unable to speak intelligibly except with their hands, using a signed language. This position, being culturally deaf, has intensified within the Deaf community in the last three decades, but it is not one that Jim Zobrest has ever embraced, in spite of his isolation from the hearing world. Throughout his life, as we shall see, Jim has remained suspended between the hearing and Deaf worlds, not completely at home in either one.

Seen in the conventionally ableist way, deafness is not a fate that the majority of hearing parents would choose for their children. That is not the only way to see the situation, because since the mid-twentieth century, changing attitudes toward disability, new assistive technologies, cochlear implants, and advances in the education of deaf students have come to make the possibilities for living a much fuller and productive life with a hearing impairment greater than ever before. But because 90 percent of those born deaf have hearing parents, who in all likelihood have no immediate family or social connection to deafness, the situation with which the Zobrests were presented was unprecedented for them and appeared a challenge at the most basic level of parenting, far beyond the inconveniences of middle-of-the-night feedings and diaper changes that deprive parents of newborns of sleep for months on end.

The doctors diagnosis was the start of a long project of support, assistance, and advocacy for the Zobrests that continues to this day. Larry and Sandi Zobrest sought to become insiders to a condition of being that they, in effect, could only know from an existential position outside it. The practical and psychological burden of such a situation, all-consuming and constant, seems plainly apparent to those not sharing the challenges of being parents of a child with a disability, but aware themselves of what hard work responsible parenting is under the best of circumstances. Much more difficult to appreciate are the rewards involved, for they have been much slower to penetrate public consciousness.

For the Zobrests, and especially for Sandi Zobrest, Jims deafness soon gave birth to an inspired, single-minded feeling of purpose that became a central force in the familys life. Larry played a role during the familys Erie years in activism on behalf of people who are hearing impaired but mostly defined his purpose as that of principal breadwinner. This often proved to be struggle enough in their up-and-down financial circumstances, especially during the years when Jim was at Salpointe Catholic High Schoolbefore they won their case and got compensated by the Catalina Foothills School Districtand they were paying about $8,500 a year for his sign interpreter, out of pocket, with the assistance of donors. Larry has an extraordinary work ethic. (He was up on the roof of their home in the Tucson desert at three in the afternoon on a mid-July day, fixing the air conditioning condenser, the day the authors interviewed the family in 2015. It was 115 degrees.) He has been willing to go in different directions to make a living. He had always wanted to be in business for himself after years as a salesman for a large corporation. But a series of business reversals in the dry-cleaning business he owned in Tucson, in which Sandi also worked, and an arson fire in the central plant that did the dry cleaning, brought them ultimately to declare personal bankruptcy. Larrys brief engagement with advocacy and with intervening on Jims behalf declined over the years, as the challenges of making a living became more difficult.

Sandi grew quickly into the role she was to play seeking the means to achieve access to the hearing world for Jim. She recalls that after those two weeks of grieving, she said to herself finally, Enough! She began to understand that it was my responsibility to be sure [Jim] was not denied anything because of his handicap. It would be Sandi who negotiated Jims IEPs with school administrators over the years; and it would be Sandi who took the first steps that led to the lawsuit that brought the Zobrests to the Supreme Court in 1993.

Her practical guidance of Jims education was intimately connected with another process of decision making regarding the course of his language development, which influenced his schooling but also was to lie at the heart of communications within the Zobrest familys own interrelationships. Choices were made early on over what sort of training in language Jim was to have. These choices were largely Sandis to exercise, not only because of Larrys attention to making a living but also because Larry had trouble learning to sign. This is hardly uncommon in families with a deaf child. It is mothers who have most often been the ones who determine the familys mode of communication. Those choices vary with the parents educational level, and they are exercised within the context of the availability of preschool training and the degree of the childs hearing loss. Mothers with a relatively high level of education, like Sandi, not only learn to sign, as Sandi did, but are likely to attempt to make a more or less careful study of the options for their deaf childs development and supplement the work of training and education at home. Larry played a role in these decisions, but without the ability to sign fluently and immersed in his efforts to make a living, he played a more limited role.