THE AUDISM PROJECT All Voices to be Heard

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1 THE AUDISM PROJECT All Voices to be Heard The Audism Project commenced in 2013 in an attempt to foster understanding between the Deaf community and its rich cultural basis, and the members of the community who seek medical intervention to improve hearing loss. Alexander Graham Bell believed that deaf and hard-of-hearing children can be psychologically and socially well-adjusted regardless of the mode of communication or technology utilized. He believed that it is not the technology that determines social adjustment; rather, there are a host of other factors that come into play. The controversy over cochlear implants in children has many sides. For some in the deaf community, CIs are an affront to their culture, which as they view it, is a minority threatened by the hearing majority. The deaf community feels that its way of life is fully functional, and that using American Sign Language instead of oral English gives them no disadvantage in society. As medical technologists at HATECH, we knew that the medical world and the deaf world were split at the onset. Education reform and comes across as colonial, very missionary imposed and done to people rather than in cooperation with people. Hearing assistive technology is perceived as forced and culture deadening. Often, the Deaf perception is that there is no hearing assistive technology needed. As 90% of deaf babies born per year are born to hearing parents, the conversation on such technology is pervasive and passionate. So from the very foundation, there is a divergence in perspective. The Audism Project was founded by the Board of Directors of HATECH so as to provide a Town Hall forum for all sides of the debate. Our results have been excellent and we are broadening the approach nationally. THE LOWERCASE D There are various ways to categorize deafness. Colloquially speaking, the two main types of deafness are conductive deafness and nerve deafness. Deafness at birth is known as congenital deafness, while deafness that occurs after birth is called adventitious deafness. The most common cause of adventitious deafness is noise, which accounts for over one quarter of people affected by hearing loss. Specific types of deafness stem from the location of the cause. The ear is made up of three different parts: Outer ear - is the part you can see. Its shape helps to collect sound waves. A tube leads inward to the eardrum. Middle ear is separated from the outer ear by the eardrum. The middle ear contains three tiny bones called the malleus (hammer bone), the incus (anvil bone) and the stapes (stirrup bone).

2 These bones amplify the movement of the eardrum produced by sound waves. The Eustachian tube attaches the middle ear to the back of the throat and helps to equalize air pressure. Inner ear - sound waves are picked up by a spiral-shaped organ called the cochlear. Hairs on the cochlear sense the vibration and pass the message - interpreted into electrical impulses - on to the brain via the cochlear nerve. Conductive deafness is caused by the failure of the three tiny bones inside the middle ear to pass along sound waves to the inner ear. Another common cause of conductive deafness is the failure of the eardrum to vibrate in response to sound waves. A build-up of fluid in the ear canal, for example, could dampen the movement of the eardrum. In many cases, treatment is available for conductive deafness and normal hearing will return. Nerve deafness is caused by disease, trauma or some other disruptive event targeting the cochlear nerve. The rest of the ear - including the tiny bones and eardrum - may be working, but the electrical impulses aren t able to reach the brain. In other cases, the problem is in the brain itself, which can t translate the messages from the cochlear nerve. Most cases of nerve deafness don t respond to treatment. Clinically speaking, physicians speak of deafness in terms of being: Sensorineural, Conductive, Mixed and Neural. Sensorineural hearing loss is a type of hearing loss in which the root cause lies in the vestibulocochlear nerve (cranial nerve VIII), the inner ear, or central processing centers of the brain. Sensorineural hearing loss can be mild, moderate, or severe, including total deafness. The great majority of human sensorineural hearing loss is caused by abnormalities in the hair cells of the organ of Corti in the cochlea. There are also very unusual sensorineural hearing impairments that involve the eighth cranial nerve (the vestibulocochlear nerve) or the auditory portions of the brain. In the rarest of these sorts of hearing loss, only the auditory centers of the brain are affected. In this situation, cortical deafness, sounds may be heard at normal thresholds, but the quality of the sound perceived is so poor that speech cannot be understood. Most sensory hearing loss is due to poor hair cell function. The hair cells may be abnormal at birth, or damaged during the lifetime of an individual. There are both external causes of damage, like noise trauma and infection, and intrinsic abnormalities, like deafness genes. Sensory hearing loss that results from abnormalities of the central auditory system in the brain is called central hearing impairment. Since the auditory pathways cross back and forth on both sides of the brain, deafness from a central cause is unusual. Conductive: Any problem in the outer or middle ear that prevents sound from being conducted properly is known as a conductive hearing loss. Conductive hearing losses are usually mild or moderate in degree, ranging from 25 to 65 decibels. In some cases, a conductive hearing loss can be temporary. Depending on the specific cause of the problem, medication or surgery can help.

3 Mixed: A mixed hearing loss is a combination of a sensorineural and conductive hearing loss. It results from problems in both the inner and outer or middle ear. Treatment options may include medication, surgery, or hearing aids. Neural: A problem that results from the absence of or damage to the auditory nerve can cause a neural hearing loss. Neural hearing loss is generally profound and permanent. Hearing aids and cochlear implants cannot help because the nerve is not able to pass on sound information to the brain. DEAF CULTURE AND THE CAPITAL D Akin to Catholic and catholic, there is Deaf and deaf. There are two views on deafness as a concept and Deaf individuals, who utilize the capitalized D to reflect their view of Deaf as Culture The difference between deaf and Deaf is at the heart of The Audism Project. The usage of deaf is often referred to as the Medical model. Those who support this viewpoint will regard a deaf individual as someone who cannot hear, who is lacking auditory capability, who is deficient in some way because he or she may not be able to communicate by "speaking" and "hearing". This viewpoint focuses solely on what a deaf person cannot do - hear - and disregards the many positive attributes and abilities of individuals who are Deaf. It is a narrow and negative viewpoint in which Deaf persons are viewed as needing assistance and in which "deafness" requires a cure. The opposing viewpoint, which is often referred to as the Cultural model, is promoted by Deaf persons themselves, and by advocates and professionals working within the Deaf community. It brings forth the idea that the inability to receive audible information is not and should not be the sole and exclusive defining characteristic of any individual or group thereof, and that a far more effective and inclusive approach is to view a Deaf person for what they can do rather than what they cannot. A simple yet pivotal argument often used by Deaf advocates is that since Deaf people can communicate easily and fluently amongst one another using American Sign Language, the communicative abilities of Deaf individuals are not diminished at all; they are simply perceived as diminished by "hearing" standards of receiving and expressing information audibly. Deaf people could in fact just as effectively argue that it is "hearing" people who are at a disadvantage, since few "hearing" people can communicate fluently in ASL the way a native ASL user can and does. DISRUPTIVE MEDICAL TECHNOLOGY The most controversial advancement in hearing assistive device is cochlear implants. A cochlear implant uses its own electrical signals to stimulate the auditory nerve, enabling hearing. Sometimes called a "bionic ear," the cochlear implant offers the hope of regaining or restoring the ability to sense sound for some people who have experienced significant hearing loss. Although they're not miracle devices, cochlear implants help some children and adults, whether they're born deaf or whether hearing loss occurs later in life, experience talking on the phone, listening to music, and hearing the voices of their friends and loved ones. A cochlear implant is a surgically implanted device that helps overcome

4 problems in the inner ear, or cochlea. The cochlea is a snail-shaped, curled tube located in the area of the ear where nerves are contained. Its function is to gather electrical signals from sound vibrations and transmit them to the auditory nerve. That nerve sends these signals to the brain, where they're translated into recognizable sounds. If important parts of the cochlea aren't working properly and the hearing nerve isn't being stimulated, there's no way for the electrical signals to get to the brain. Therefore, hearing doesn't occur. (Sensorineural hearing loss.) By completely bypassing the damaged part of the cochlea, the cochlear implant uses its own electrical signals to stimulate the auditory nerve allowing the person to hear. At HATECH we fancy ourselves as medical technologists, providing the latest in hearing assistive devices. But we are never distanced from the moral and ethical questions of culture. A recent visitor to our La Jolla office said: Why such controversy? If you had invented a true bionic eye, the blind would be lined up around your block. Perhaps this is so. But a culture matters as well. A recent speaker at an Audism Project meeting described the experiences of his grandmother who was starving to death after her escape from a Holocaust-era concentration camp. A villager gave her a piece of meat, which she declined for she was kosher. As the grandmother later explained, there is no point in living if you have no culture to hew to and observe. The key mission of the Audism Project is to respect Deaf culture in all of its forms but allow for medical technology to disrupt ASL and at the same time potentially coalesce. ELECTIVE DISABILITY The use of cochlear implants has aroused serious and passionate debate. Members and proponents of Deaf culture vigorously oppose implants both as a seriously invasive treatment of limited efficacy and as a major threat to Deaf culture. In this context arise questions about the extent to which individuals with disabilities may decline treatments to improve disabling conditions. When they do so, to what extent may they call upon society to provide supportive services and accommodations? In our Project workshops we hear discussion on Elective Disability from technology advocates, who state that a choice is being made by anyone who elects to not receive technological advancements in remediating hearing loss. HISTORY OF A DIVIDE Deaf history focuses in part on a long struggle over ways to overcome a heritage of discrimination by the hearing world and to provide better opportunities for the hearing-impaired. Language lies at the center of this debate. While some endorse sign language as the natural method of communication and education for the deaf, others believe that deaf people should learn spoken and written language so they can be mainstreamed with the rest of society. With the appearance of such recent technological innovations as the cochlear implant, questions of community, language, integration and identity continue to rage. It is easy for the hearing world to think of ASL as pidgin or as an unformed dialogue, and have no regard for its rich history.

5 A broad, generalized highlighting: Dating back to 350 AD, Benedictine monks take vows of silence to better honor God. To communicate necessary information, they develop their own form of sign language. In the United States in the 1600 s, the remote islands forming Martha's Vineyard, Massachusetts begin a tradition of schooling and commerce in their own self-created sign language. This was necessitated by the fact that due to hereditary hearing problems, in some villages, 25 percent of the residents are deaf. During this period, the Vineyard develops its own form of sign language. Town meetings were all signed, so that residents would be aware of events and procedures. Hearing residents learned this language voluntarily and engaged with ease with their deaf neighbors and merchants. This practice continued well into the 1800 s and descendants still live in the area today. In 1814, Thomas Hopkins Gallaudet, an American interested in deaf education, traveled to Europe and met the Archbishop Roche Sicard, the author of "Theory of Signs." And the Dean of a prestigious Deaf school. Sicard sent one of his instructors, Laurent Clerc, back with Gallaudet, and the pair found the American School for the Deaf in Hartford, Connecticut. Hartford became the hub of deaf education at this point, Many teachers of the deaf train in Hartford, and, soon sign-based deaf schools in New York, Pennsylvania, Kentucky and elsewhere begin to flourish. In an early bid for separatism, John Flournoy a former pupil of the Connecticut school proposes to Congress that land be set aside in the western territories for the creation of a deaf state, where deaf people could better enjoy their own community and flourish unrestrained by prejudice and the often restrictive good intentions of hearing society. In 1864 Abraham Lincoln signs the charter for the Washington, D.C. - based college for the deaf. Originally known as the National College for the Deaf and Dumb, it is the only accredited facility for the deaf in the United States to offer college degrees. It is named for Thomas Gallaudet and his pioneering efforts. The first president of Gallaudet is Edward Miner Gallaudet, son of Thomas Hopkins Gallaudet. The dedication of the Gallaudet family is honored when the college changes its name to Gallaudet College in In 1872 Alexander Graham Bell takes his lifelong interest in deaf education and opens a deaf school in Boston focusing primarily on oralism. This signals a divide. The school is not successful however, due to heavy opposition from established deaf schools that use manual sign methods. Bell eventually gives up administering deaf education and later forms the Volta Bureau to promote oral- based education for deaf children. A period of upheaval in deaf education begins with a backlash against sign language. The battlefield is set for oral language vs. signed language. In 1880 Conference of Milan endorses oral education, thus adding fuel to the flame. This international gathering of deaf educators pronounces oral education methods superior to sign language. The only country opposing the vote for oral-based education is the United States, where manual education had already made great strides. During the next 10 years, the popularity of manual education for the deaf declines sharply. Seventy-five percent of teachers using the manual method have retired by In the

6 U.S., the National Association of the Deaf (NAD) is founded and gains support in reaction to the Milan resolution. The NAD is instrumental in keeping sign language alive. In a cultural fast-forward, in 1964 a deaf inventor named Robert Weitbrecht invents the Teletypewriter (TTY), which enables deaf people to use phone lines to call each other and type out their conversations. In that same year, US Congress issues the Babbidge Report on oral deaf education and concludes that it has been a "dismal failure." Many in the deaf community applaud this report, and look at it as a longoverdue acknowledgment of the superiority of manual communication and education is often referred to as the year of the deaf education revolution, the apex of the still-unresolved fight over oral vs signed speech. Medical technology did not yet play much of a role in this context, as this was an era of over the ear hearing aids of limited efficacy. In 1985, The cochlear implant is approved for clinical trials in people 18 and older. The device is a mechanical prosthesis of sorts for the inner ear. It bypasses the bones of the inner ear, placing electrodes directly into the cochlea, where sound waves are absorbed and interpreted by the auditory nerve. In the early 1990 s, the advent of data plans opens many new doors for the deaf ad two-way texting enters the mainstream. The Deaf are early adopters. DEAF EDUCATION The deaf education revolution was spawned in the 1970's. The culture rebelled against attempts by some educators in the hearing world to teach deaf children to speak English. The oral approach discouraged the use of sign language, yet many children - even with the most powerful hearing aids - had difficulty understanding what was supposed to be their native language. Deaf education in the US has not improved significantly since the oral vs. sign resolution of Facts on Deafness: There are 28 million Deaf and Hard of Hearing individuals in the United States. 75% of 18 year old Deaf persons are functionally illiterate. The average reading level of Deaf high school graduates in the United States is roughly at the fourth grade level. Only one fourth of severely to profoundly Deaf students leaving school read at the fifth grade level. 90% of Deaf children are born to hearing parents who do not communicate with them.

7 Throughout the 1960 s until 1975, two historically divergent education methods converged as Total Communication; a combination of manual and speech-based instruction for the deaf was developed and promoted. Formulated in the early 1960's by a mother dissatisfied with oral-based attempts to teach her deaf daughter, the Total Communication system gains grassroots support and becomes the foundation for a new approach to deaf education within public school systems. By 1975, Public Law , was passed requiring handicapped children in the U.S. be provided with free and appropriate education, allowing many to be mainstreamed into regular public schools, where they receive special instruction but interact with the general public school population. On a University level, Gallaudet, long regarded as the Harvard of Deaf Education, has its own challenges in terms of keeping a Deaf focus but being open to all. One issue of contention was the issue of having hearing Presidents. In March of 1988 this divide widened and split open as students and faculty at Gallaudet University protested the selection of another hearing president. The 'Deaf President Now' protest continued for one week, with multiple rallies, press conferences and marches. After eight days of student protests, I. King Jordan was named the first deaf president of Gallaudet University. Meanwhile, Congress recommends that American Sign Language be used as the primary language for the deaf, with English as a second language. In 1989 Gallaudet was again the focus of international attention when The Deaf Way brings together 5,000 deaf people from across the globe. The event further boosts deaf pride and cultural awareness. In 2006 another President was removed under protest, this time a deaf President whose beliefs on bridging divides were immediately unpopular. ETHNIC CLEANSING: GENOCIDE The Deaf community is a culture. Cultures are tied by actions and commandments, but also by language. Their common language, their primary language, which is American Sign Language Throughout the 1980s and the early 1990s, Deaf people mobilized to protest the use of cochlear implants. In particular, and this is still true today, they objected to the choice being made on behalf of young children to insert the implant. These critics reject the idea of trying to find a cure for deafness. Indeed they have compared it to genocide. They argue that deaf people should not be thought of as disabled but as members of a minority cultural group. The search for a cure for deafness represents an assault on the language and values on the Deaf. A common accusation from the Deaf community is the belief that society seeks a cookie cutter approach and fails to modify its institutions to take account of the perspectives and needs of members of another culture. Cochlear implant technology represents an attack on the culture of the Deaf, because it seeks to ensure that deaf children grow up to use a spoken language rather than the signed languages of the Deaf.

8 Success in widespread CI adoption adversely affects the interests of individual members of Deaf culture by reducing the size of the community. AUTISM, ASPERGERS AND AUDISM There is some work in the autism community on raising awareness among society, but the very nature of autism could make self-promotion difficult for autistic people. The autism rights movement encourages autistic people to "embrace their neurodiversity" and encourages society to accept autistics as they are. They advocate giving children more tools to cope with the non-autistic world instead of trying to change them into neurotypicals. They say society should bend toward differences instead of trying to cure them. Proponents of the rights movement appear pleased with the removal of Aspergers from DSM-5. Factually, Aspergers was removed because it was bundled in with Autism and Dyslexia. Yet its removal pleased many in the rights community, who saw the removal as a victory. Quite often at the Audism Project we are visited by adults diagnosed with high-functioning Autism or Aspergers, and they share the concerns of the Deaf community. They asked not to be labeled, not to be cured, and not to be fixed for they are not broken. Like many adults in the Deaf community, they have found gainful employment in roles well-suited to their talents. DEAF AS DISABLED When talking to hearing persons about the cochlear implant, the single biggest barrier to their understanding the hostility of many Deaf persons towards it is an inability to comprehend that deafness could be perceived as anything other than a tragic loss and a disability. Arguments about the purported rights of the Deaf to preserve their culture will most likely be perceived as perverse if we as a society understand deafness as a disabling medical condition. This perception is inaccurate on many levels. Firstly, the condition of deafness involves the development of new or enhanced sensory modes as well as the absence of more familiar modes. There is a tendency in our society to think of human variation solely in terms of deviation from some imagined perfection. In particular it is easy to think of disability as a merely negative phenomenon; as the loss of capacities only. But a loss of capacities in one area is often accompanied by a gain in capacities in another. People who are deaf often have skills and abilities that hearing people lack. First and foremost of these is the ability to communicate in Sign as a natural first language. But deaf persons may also have a superior consciousness of subtlety of gesture and of the movement of bodies through space than do hearing persons. Generally, the differences which in existing social contexts appear to us as disabling may sometimes be better thought of as constituting a different way of being, and one which is not necessarily inferior. In certain environments (such as those with high levels of environmental noise) deafness will be an advantage and people who are deaf will have greater ability to act. Secondly, arguments of this type founder on our reluctance to single out a normal human body from the range of variation that we currently recognize. Perhaps one way to avoid the difficulties of adjudicating who is normal and who is not might be to draw up a list of paradigmatically human capacities and then decide the matter with reference to that list? Deafness is a disability because

9 hearing is one of the six senses that humans characteristically possess (including proprioreception). The limits of normal human capacities will be the result of who we consider to be part of the range of normal variation amongst persons. COCHLEAR CULTURE Culture is defined as the ideas, customs, skills, and arts of a given people in a given period. A common language is generally accepted as necessary to share these aspects of the culture. The Deaf culture is a group of individuals, generally born-deaf, and who communicate with American Sign Language (ASL). The Deaf culture is both defined and bound by their deafness and their language. Members of this Deaf community regard themselves, their identity, and their interpretation of the world as the norm. They believe that deafness opens them up to membership in a community with its own rich history, language and value system rather than a disability that condemns them to a world of silence. As cochlear implants have been FDA approved for over 20 years, the implanted patients have developed a culture of their own, by necessity. There is still an interest in and knowledge of ASL, but there is also a new type of knowledge, as sounds becoming hearing and day-to-day interactions with the world take on a different meaning. This is a new and tenuous culture as Deaf friends do not understand, and hearing friends struggle with a new way of communicating. CI patients often form a bond with each other as they navigate two worlds and try to determine where they fit over time. They must also be strong in the face of criticism from the Deaf community. TRAPPED BETWEEN CULTURES Both a liberal and a communitarian account of the value of culture are capable of grounding a serious objection to the use of the existing cochlear implant in pre-linguistically deaf children. The danger with existing cochlear implants is that they risk depriving such children of full membership of any culture. The implanted may end up trapped between cultures, unable to function effectively in a hearing context but also lacking the facility with sign language available to those who grow up with it as their first language. This risk exists because of the imperfect nature of the current technology and because the attempt to hear and communicate in a spoken language is often made at the cost of an early education in Sign. Existing implants fall substantially short of guaranteeing that the implanted will be able to participate fully in hearing interaction. It is widely acknowledged that the majority of persons who receive the implant will remain deaf to some extent. A significant percentage of early childhood implanted are unable to communicate effectively even with those close to them, without the benefit of Sign, lip reading, or other hearing aids. Moreover, ease of communication in a signed language removes the incentive for the child to learn to speak and for this reason communicating with the child in Sign, and the child s own use of Sign, may sometimes be discouraged. If this occurs and the child s attempt to learn to hear and speak with the aid of the implant fails then she will have been deprived of the early contact and experience with Sign that allow those who learn it from

10 birth to use it as a natural language. The child may grow up unable to use any language fluently and suffer a host of cognitive, developmental and educational problems that flow from this. Furthermore, lacking effective language skills, she may also be deprived of full badge-wearing membership of either the hearing or Deaf community. The outcomes for deaf children fitted with the implant may therefore sometimes be worse than if they had been allowed to grow up using a signed language and if resources had been devoted to removing the social causes of the disadvantages that the Deaf face in a society oriented around spoken language THE IMMIGRANT The late-deafened struggle with their own identity issues. Self-describing as an immigrant, new kid in town town vs. gown or man without a country, they suffer unique challenges by not being born Deaf. In many cases they do not become deaf until thirties, due to accident or sudden-onset illness. Their knowledge burden is doubled, for they knew nothing of Deaf culture and nothing of medical technology. Some say they feel lucky to have a choice, but many feel overburdened BRIDGING A DIVIDE At the Audism Project we have been bringing Deaf and hearing participants together at college campuses, community centers and recreation centers. We strive to hear all voices and we cover as many bases as we can in each session. Deaf parents, hearing parents, implanted patients at various stages of post-operative care, Deaf educators, State Legislators, any stakeholder in this ongoing story of communication. In conclusion, we have been pleased with the open forum of communication and the successes we have observed in bridging communication styles. We have proven and continue to prove that what set us apart is now bringing us together.