Melissa Corcoran Melissa Henry Nehal Kothari Ting-Fen Lin Shanna Massaro Virginia O’Neal Samantha Sefton

1. Harlan Lane Melissa CorcoranMelissa HenryNehal KothariTing-Fen Lin Shanna MassaroVirginia O’NealSamantha Sefton

2. Who is Harlan Lane? • Dr. Lane is a professor at Northwestern University who specializes in deaf culture and sign language. • He studied at Harvard University under B.F. Skinner and received a Doctorate of Psychology there. He also earned a Ph.D. in linguistics from the University of Paris. • He is ranked Commandeur de l'Ordre des Palmes Académiques, which is the highest level of academic achievement from the French government. • In 1991 he received the “genius award” from the McArthur Foundation. • Dr. Lane is infamous for his criticism of cochlear implants, and is a spokesman for the Deaf community.

3. Deaf Agenda • Dr. Lane promotes the Deaf agenda, which is focused on the topics of bilingualism and biculturalism. • The Deaf agenda has four central themes: 1.) Winning the fundamental human rights that are guaranteed under international covenant, such as the right to use one's minority language. 2.) Securing education for Deaf children that uses their primary signed language, but also teaches them the majority language. 3.) Improving the Deaf's access to information through both the signed language and the majority language. 4.) Enhancing Deaf culture and social life. (Lane, Hoffmeister, & Bahan, 1996, p.414)

4. HR 2005_114 • Whereas, The optimal health care system should be sensitive (and fair) to all cultural groups, and • Whereas, Two important components of culture are natural enculturation of the values and knowledge of that culture and the natural language of that culture, and • Whereas, The majority of individuals in this society are hearing and may not be knowledgeable about Deaf Culture and, actually, may be biased against Deaf Culture (including its language: American Sign Language), and • Whereas, The inability to use the natural language of a culture may produce a severe disadvantage to an individual trying to operate within that culture, and • Whereas, The ability to use any particular language is maximized only when children learn it as a first language, and • Whereas, Interactions with deaf individuals for whom ASL is a native language at an early age will provide children with necessary experience to learn ASL with native competence, • Be it resolved that Deaf children must have, as one of their primary caregivers, a deaf parent or guardian who uses ASL or, if no caregiver is deaf (or the deaf caregiver does not use ASL), the child must be enrolled in a deaf educational program, from pre-school through middle school, that provides instruction in ASL and aspects of the Deaf Culture. Funds to come from the State or from the Federal Department of Education

5. Views on: HR 2005_114  • Whereas, The optimal health care system should be sensitive (and fair) to all cultural groups, and • Whereas, Two important components of culture are natural enculturation of the values and knowledge of that culture and the natural language of that culture, and • Whereas, The majority of individuals in this society are hearing and may not be knowledgeable about Deaf Culture and, actually, may be biased against Deaf Culture (including its language: American Sign Language),

6. Disability (medical) vs. cultural definition • The Deaf should not be regarded as a disability, but a cultural group because: • It has all the properties of a cultural ethnic group. • Most Deaf people do not view themselves as having a disability. • The disability view brings with it needless and risky medical procedures to be performed on Deaf children. • These procedures are also harmful towards the existence of the Deaf World. • The disability view also brings bad solutions to real problems because it is built upon misunderstanding.

7. Deafness as a Disability • Some who are born deaf chose not to join the Deaf culture and community. • They are supporters of cochlear implants, which places them in the hearing world. • Those who have this view think of themselves as hearing people with the disability of deafness.

8. What is Deaf Culture? • “Small group of visual people who use a natural visual-gestural language and who are often confused with the larger group who view themselves as hearing impaired and use a spoken language in its spoken or written form.” (Lane, 2005, p.1) • The philosophy for Deaf Culture is that they are considered an ethnic group with their own values, belief system, and language. It is inappropriate to view them as a disabled group of individuals.

9. Internal properties of Deaf culture • Collective Name: the Deaf world has a name for itself in it’s own language • Feeling of Community: Deaf culture is a very tight-knit group. They gain a sense of identity and family from their community. They have the highest rate of endogamous marriage at 90%. • Norms of behavior: are present in their culture. • Customs: especially in language, they have their own way of taking turns in conversation and speaking. • Social Structure: the Deaf world has many subcultures including athletic, social, political, literary, religious, and fraternal.

10. Internal properties of Deaf culture (cont.) • Language: “Language is the surest way for individuals to safeguard or recover the authenticity they inherited from their ancestors as well as to hand it on to generations yet unborn’’ (Fishman,1989 as cited in Lane, 2005, p. 293). • In America and other North American countries American Sign Language is a central theme of Deaf ethnicity. • The Arts: ASL is used in language arts like narratives, tall tales, world play, storytelling and poetry. These visual art performances are often based on Deaf culture. • History: Deaf culture has a rich history documented by books, films, and stories. • Kinship: The members of the Deaf ethnicity group are very close. Although different groups are scattered around the world, when two members from different groups meet they immediately share a common bond in their visual language.

11. Support for Deaf Culture • “In societies in which sign language use is mostly restricted to Deaf people, hearing people commonly see being Deaf as a serious problem requiring professional intervention; but in societies in which sign language use is widespread because of a substantial Deaf population – on Martha’s Vineyard and Bali, for example – being Deaf is simply seen as a trait, not a disability” (Lane, 2005, p. 295)

12. Views on: HR 2005_114  • Whereas, The inability to use the natural language of a culture may produce a severe disadvantage to an individual trying to operate within that culture, and • Whereas, The ability to use any particular language is maximized only when children learn it as a first language, and • Whereas, Interactions with deaf individuals for whom ASL is a native language at an early age will provide children with necessary experience to learn ASL with native competence

13. Language • The Deaf community should communicate through a manual language which makes use of their heightened senses. • Individuals who are Deaf often feel that not being able to use a manual language is just another form of mental and physical abuse. • On average, the older the Deaf child is when learning manual language, the harder the skill will be to attain. It is easier for hearing children to learn the use of manual language than late learning deaf children, because they have the advantage of learning the mainstream oral language from birth.

14. Views on: HR 2005_114  • Be it resolved that Deaf children must have, as one of their primary caregivers, a Deaf parent or guardian who uses ASL or, if no caregiver is deaf (or the deaf caregiver does not use ASL), the child must be enrolled in a deaf educational program, from pre-school through middle school, that provides instruction in ASL and aspects of the Deaf Culture. Funds to come from the State or from the Federal Department of Education.

15. Schooling for the Deaf • From The Mask of Benevolence: "The tragedy is not that America's deaf children cannot speak or lip-read English: the tragedy is that their education is conducted exclusively in this English they do not know.” (Lane, 1993, p.238) • The average 16 year old Deaf student reads at the level of an 8 year old hearing child. At math, they are still 4 grades behind. • Due to these statistics, parents of Deaf children should look at these three criteria when deciding how their child should be educated: • The language used for instruction • The quality of the school academically • The degree of social interaction

16. Types of Schools • Separate schools for the Deaf (residential and day schools) • They provide the key to socialization, many believe they are where enculturation takes place. • The greatest advantage is that the staff are Deaf as well, which provides the students positive role models. • Mainstreaming (ranges from self-contained to full inclusion) • Self contained is when the Deaf child is in a separate classroom of a hearing public school, receiving different curriculum. Interaction with hearing students happens at lunch and between class, but after school activities generally cater to hearing students only. • Full inclusion is when the Deaf child is in the classroom with hearing children. The Deaf student often feels socially isolated in this model of education and creates feelings of loneliness.

17. Support for a Deaf mentor • Most Deaf children are born to hearing parents. Because the parents are largely ignorant about Deaf culture, and want their child to be “normal”. They will opt to turn to social institutions for help medically and academically. The children themselves are too young to refuse treatment or to dispute the infirmity model of their difference. • Since the parents are hearing and can not relate to the Deaf world, the child needs a Deaf mentor in order to gain a Deaf identity, and to learn language and culture.

18. HR 2005_113 • Whereas, The optimal health care system should utilize the most efficacious, and appropriate treatment in addressing disorders—including communication disorders, and • Whereas, The majority of individuals in this society are hearing and that most social interactions and job-related duties require the ability to use spoken language, and • Whereas, The inability to use spoken language may produce a severe disadvantage to an individual, may have a negative impact on educational opportunities, and may lead to fewer career opportunities and advancements, and • Whereas, The ability to use spoken language is maximized only when children learn it as a first language, and • Whereas, The cochlear implant device (and related speech processors) when implanted in young children will provide them with a means to learn and use spoken language at an early age, then • Be it resolved that All health plans, HMOs, and Federal and State Funds directed at health care benefits, must provide support for the implantation of cochlear implants in adults and in children as young as two years of age who have been diagnosed as being profoundly deaf binaurally, and that the cochlear implant device is to be viewed as the preferred treatment approach to profound deafness in children and adults.

19. Views on: HR 2005_113 x • Whereas, The optimal health care system should utilize the most efficacious, and appropriate treatment in addressing disorders—including communication disorders,

20. Deafness Is Not a Disorder • Scholarship does not provide clear-cut guidelines between valuable diversity and treatable deviance. It is up to us to realize that Deafness is not a disorder. • By learning ASL at an early age, Deaf individuals do not have a language disorder nor is their health compromised in any way!

21. Views on: HR 2005_113 x • Whereas, The majority of individuals in this society are hearing and that most social interactions and job-related duties require the ability to use spoken language, and • Whereas, The inability to use spoken language may produce a severe disadvantage to an individual, may have a negative impact on educational opportunities, and may lead to fewer career opportunities and advancements,

22. Social and Occupational Interactions & Experiences Social: • Inclusion causes a lack of social interaction for the Deaf student (when being placed in classes with hearing peers). The Deaf student often feels excluded and lonely. • The use of oral language, when inappropriate, creates isolation instead of social interactions. • Rather, being in the Deaf community, the young deaf child has many social interactions and opportunities.

23. Social and Occupational Interactions & Experiences • People who do not believe in cochlear implants argue that the implant and the following therapy often lead the deaf child to a negative identity and unease communicating in sign language: • In this model, hearing and speech play an important role in the child’s success. As implants do not produce normal hearing, this definition of success often lead to a poor self-image as “disabled.” • Children with implants are also often isolated from other deaf kids and from sign language, & instead are married to the professionals.

24. Social and Occupational Interactions & Experiences Career: • The issue we should be discussing is: Why are there few job opportunities for the Deaf? Workplaces are supposed to be race, religion, disability, discrimination, etc. free. • Lack of majority education: ASL is not the same as English, so the Deaf face writing skills problems. We shouldn’t expect their abilities to mirror that of a native English speaker!

25. Social and Occupational Interactions & Experiences • As we are gradually educated about AAE and other spoken dialects… why not ASL? Further job issues: • Cochlear implants are not a cure: implants do not produce normal hearing. • Stigma associated with having a CI visible on the head.

26. Views on: HR 2005_113 x • Whereas, The ability to use spoken language is maximized only when children learn it as a first language,

27. Language • FDA has approved cochlear implantation for children above 1 year of age; however, hearing children have massive exposure to language starting in utero, and are already on their way to producing their first words by this age. • Shouldn't we discuss giving children a first language, not necessitating a first spoken language?

28. General Information about Cochlear Implants (CI) • A surgically implanted electronic device • Often referred to as a bionic ear • Does not amplify sound • Directly stimulating any functioning auditory nerves inside the cochlea with electrical impulses • Components: speech processor, microphone, and transmitter http://en.wikipedia.org/wiki/Image:Cochlear_implant.jpg

29. General Information about Cochlear Implants (CI) A prime CI candidate is described as • Having severe to profound sensorineural hearing impairment in both ears • Having a functioning auditory nerve • Having lived a short amount of time without hearing • Having good speech, language and communication skills • Having a family willing to work toward infants’ and young children’s speech and language skills with therapy • Not being benefited by other kinds of hearing aids • Having no medical reason to avoid surgery • Living in or desiring to live in the “hearing world” • Having the support of family and friends

30. General Information about Cochlear Implants (CI) • The operation usually takes from 1½ to 5 hours and is done under general anesthetic. • First a small area of the scalp directly behind the ear is shaved and cleaned. Then a small incision is made in the skin just behind the ear and the surgeon drills into the mastoid bone and the inner ear where the electrode array is inserted into the cochlea. • Children patients normally remain in hospital for 1-2 days; adult patients one day. • After 3-4 weeks of healing, the implant is turned on or activated. Results may not be immediate, and post-implantation therapy may be required as well as time for the brain to adapt to hearing new sounds. http://en.wikipedia.org/wiki/Cochlear_implant

31. Views on: HR 2005_113 x • Whereas, The cochlear implant device (and related speech processors) when implanted in young children will provide them with a means to learn and use spoken language at an early age, then • Be it resolved that All health plans, HMOs, and Federal and State Funds directed at health care benefits, must provide support for the implantation of cochlear implants in adults and in children as young as two years of age who have been diagnosed as being profoundly deaf binaurally, and that the cochlear implant device is to be viewed as the preferred treatment approach to profound deafness in children and adults.

32. Conflicts of Interest / Other Problems with CIs • The speech therapists’ and teachers’ biases can creep into the scoring of tests because they want the best outcome for the implant patient. • Testing children reliably and validly is difficult, especially when the experimenter and the child do not have a common language. • Very few standardized language tests include deaf children (oral and signing) in their normative sample – so how can we really determine language impairment?

33. Conflicts of Interest / Other Problems • Part of the description of a prime candidate includes “desiring to live in the hearing world”. How can a two year old state what they desire? It is imposing the parent’s wishes on the child! • Additionally, true consent can only occur after describing the alternative of acquiring language via acquisition of ASL. If parents are hearing – where can they get this information from? Aren’t audiologists and ENT surgeons biased in this regard?

34. Conflicts of Interest / Other Problems • The bill states that cochlear implants should be implanted in kids “as young two years of age”. • By this age, normally hearing children are speaking in two word utterances, about to experience a word growth spurt, have an expressive vocabulary of roughly 50 words, and have a huge receptive vocabulary. • How do you overcome a two-year delay, especially when the hearing impaired child still isn’t normally hearing even after the CI?

35. The Risks and Limitations of Childhood CIs • The device is surgically implanted under a general anesthetic. Therefore there is a risk. • One report says about 1 child in 30 who is implanted develops complications such as pain, infection, drainage, or slow healing of his wound; displacement or misplacement of the electrode; and damage to his facial nerve or vestibular system during the surgery. (Lane, 1999,p. 217) • In 2003, the CDC and FDA announced that children with cochlear implants are at a slightly increased risk of bacterial meningitis; this risk is 30 times that of the general population. This can result in death. (e.g. Wikipedia; FDA)

36. The Risks and Limitations of Childhood CIs • Another study reports complications as often as one patient in seven implanted with the standard nucleus-22 device. • The FDA’s “Summary of Safety and Effectiveness Data” cites the alarming figure of one child in six with adverse reactions and complications. • The deeply inserted wire electrodes that the FDA has approved may be difficult to remove without serious structural damage. Furthermore, the effects of damaging the ear through insertion, as well as the effects of long-term electrical stimulation, are unknown.

37. The Risks and Limitations of Childhood CIs • Usually the surgeon can resolve these problems - frequently at the cost of more surgical intervention. • Even if there are no complications associated with the initial implantation,the child may have surgery again one day, since the internal parts of the implant could break down and since improvements in the design of implants over the next 60 or 70 years of his life could require changing the internal coil or electrodes.

38. The Risks and Limitations of Childhood CIs Ethical issue: • Critics question the ethics of such invasive elective surgery on healthy children. They point out that manufacturers and specialists have exaggerated the efficacy and downplayed the risks of a procedure that they stand to gain from.

39. Medical Solutions are not the “Preferred Treatment” Several difficulties faced by the medicalization of cultural deafness: • Adults with this putative medical problem insist they do not have a medical problem. • History provides many examples of more dominant cultural groups labeling less dominant cultural groups as defective, but no example of an entire linguistic and cultural minority that is truly infirm. • There is no medical treatment that will improve the quality of life of the putatively infirm population as a whole.

40. Medical Solutions are not the “Preferred Treatment” • The otologists and audiologists who apply the infirmity model to culturally deaf people are often unaware of the language and mores of those whose way of being and behaving they consider infirm. • Some of the professions collaboration in the medicalization of this population have a financial and social stake in designating cultural deafness as a medical/handicap problem. (Lane, 1999, p. 207)

41. Medical Solutions are not the “Preferred Treatment” • Although these considerations weigh against the infirmity model of cultural deafness, many hearing professional people hold tenaciously to that model. • Why are growing numbers of culturally deaf children receiving implants? • Active agent is the aural/oral establishment • The medicalization makes sense to uninformed hearing parents • Holds out false hope that their children will not embrace a minority language and culture

42. Medical Solutions are not the “Preferred Treatment” • According to Johnston (2004), “cochlear implants are the technological and social factors implicated in the decline of sign languages in the developed world. Some of the more extreme responses from deaf activists have labeled the widespread implantation of children as ‘cultural genocide’.” (as cited in Lane, 1999, p. 208)

43. CIs: A Threat to Deaf Culture • The proponents of Deaf culture regard measures such as CI surgery as a possible way to control and eliminate or reduce the birth of deaf children because they regard them as abnormal, disabled or inferior • “Programs that substantially diminish minority cultures are engaged in ethnocide and may constitute as crimes against humanity.” (Lane, 2005, p. 303) • We don’t endorse surgery on a black child in order to help the child “pass” as a member of the majority!

44. Conclusion • “So medical intervention is inappropriate, even if a device was perfect. The invasive surgery on healthy children is wrong. The interests of the deaf child and his parents may be best met by accepting that he is a deaf person. The child has access to an elaborate cultural and linguistic heritage that can enrich both the child’s and the parent’s lives.” (Lane 1999, p. 238)

45. Conclusion Clearly Harlan Lane, although a hearing individual, is representing the views of the Deaf community: When I. King Jordan was asked if he would like his hearing back, he replied: • “That’s almost like asking a black person if he would rather be white… I don’t think of myself as missing something or as incomplete… It’s a common fallacy if you don’t know Deaf people or Deaf issues. You think it’s a limitation.” (Lane, 2005, p. 298)

46. “It is illegitimate to ask, ‘What does our society gain by having a Deaf culture and community?’ if the implication is that a minority must pass a value-added test or otherwise face extinction or attempts to force its assimilation. Cultural diversity is central to our understanding of what it means to be a human being; each culture lost, each language allowed to die out, reduces the scope of every person’s humanity. Intolerance is also almost laughable shortsightedness. Intolerance always contains within it the seeds of self-destruction.” (Lane, 1999, p.237-238)

47. References • Cohen, L. (1994) Train Go Sorry. New York: Vintage Books • Food and Drug Administration (2003). FDA Public Health Web Notification1: Risk of Bacterial Meningitis in Children with Cochlear Implants. Retrieved fromhttp://www.fda.gov/cdrh/ safety/cochlear.html January 27, 2007. • Lane H. (1992). The Mask of Benevolence : Disabling the Deaf Community. New York: Alfred Knopf. • Lane H. (1999). The Mask of Benevolence : Disabling the Deaf Community (2nd ed.). San Diego, CA : DawnSign Press. • Lane, H., Hoffmeister, R., Bahan, B. (1996) A Journey into the Deaf-World. San Diego, CA : DawnSign Press. • Lane, H. (2005). Ethnicity, ethics, and the Deaf-World. The Journal of Deaf Studies and Deaf Education, 10 (3), 291-310. • Wikipedia (2007a). Cochlear Implant. Retrieved from http://en.wikipedia.org/wiki/Cochlear_implant, January 27, 2007. • Wikipedia (2007b) Harlan Lane. Retrieved from http://en.wikipedia.org/wiki/Harlan_Lane, January 27, 2007.

48. Suggested Additional Reading • Lane, H. (1979) The Wild Boy of Aveyron. Boston: Harvard University Press. • Lane, H. (1989). When the Mind Hears. New York:Vintage. • Lane H. (1992). The Mask of Benevolence : Disabling the Deaf Community. New York: Alfred Knopf. • *Lane H. (1999). The Mask of Benevolence : Disabling the Deaf Community (2nd ed.). San Diego, CA : DawnSign Press. • *Lane, H. (2005). Ethnicity, ethics, and the Deaf-World. The Journal of Deaf Studies and Deaf Education, 10 (3), 291-310. • Lane, H., Hoffmeister, R., Bahan, B. (1996) A Journey into the Deaf-World. San Diego, CA : DawnSign Press. • Lane, H. (2006). The Deaf Experience: Classics in Language and Education. Boston: Harvard University Press. * Indicates suggested reading provided by Harlan Lane about the cochlear implant debate. To contact Harlan Lane email: lane@neu.edu