Cochlear Implants and
Definitions of Disease
PHL281Y Bioethics
Summer 2005 University of Toronto
Prof. Kirstin Borgerson
Course Website: www.chass.utoronto.ca/~kirstin
Overview
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Cochlear Implants
VIDEO & family tree
Short history/definitions of Deafness
Arguments against cochlear implants
Arguments for cochlear implants
Definitions and models of disability
Definitions of disease
Cochlear Implants
 Cochlear Implant:
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“An implanted electronic hearing device, designed to
produce useful hearing sensations to a person with severe to
profound nerve deafness by electrically stimulating nerves
inside the inner ear” - FDA
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2 components:
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Externally worn microphone, sound processor and
transmitter system
Implanted receiver and electrode system, which contains
the electronic circuits that receive signals from the external
system and send electrical currents to the inner ear.
Cochlear Implants
Sound and Fury - Video
 2001 Academy Award
Nominee for Best
Documentary Feature
 For more:
http://www.pbs.org/wnet/s
oundandfury/
Family Tree
The Artinians
Peter Sr.
NITA
PETER
The Mancinis
Marianne
Chris
MICHAEL
NANCY
Mari
PETER
HEATHER
=Married=
Deaf persons in CAPS
Time and Cochlear Implants
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Must be provided as
early in infant
development as possible
for maximum efficacy
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Connections between
language and brain
development
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Waiting 10 or 15 years
for a child to make
his/her own choice “is the
same as deciding the
child will not have an
implant” (Tucker, 8)
Risks of Cochlear Implants
 http://www.fda.gov/cdrh/cochlear/
 Of surgery:
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Reaction to general anesthesia, injury to the facial nerve,
meningitis, cerebrospinal fluid leakage, perilymph fluid leak,
infection, blood or fluid collection at the site of surgery, attacks of
dizziness or vertigo, tinnitus, taste disturbances numbness around
the ear, reparative granuloma
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“There may be other unforeseen complications that could occur
with long term implantation that we cannot now predict”
Risks of Cochlear Implants
 Of living with the implant:
 May:
 hear sounds differently
 lose residual hearing
 have unknown and uncertain
effects
 not hear as well as others
 not be able to understand
language well
 have to have it removed
temporarily or permanently if an
infection develops
 have their implant fail
 not be able to upgrade
 not be able to have some
medical examinations and
treatments
 damage their implant
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May:
 find them expensive
 have lifestyle changes
 have less ability to hear both
soft sounds and loud sounds
without changing the sensitivity
of the implant
 develop irritation
 hear strange sounds caused by
its interaction with magnetic
fields
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Will:
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depend on batteries
have to use it for the rest of life
have to be careful of static
electricity
Can't let the external parts get wet
Benefits of Cochlear Implants
 Some hearing (varies)
 Most perceive loud, medium and soft sounds
 Many understand speech without lip-reading
 Many can make telephone calls
 Many can watch TV more easily
 Some can enjoy music
Other Options
 ASL
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No written form
 Oralism (speak and lip-read)
 Cued speech
 Total Communication
(1970’s) – bad results
 Bilingual/bicultural approach
(ASL… then sometimes
ESL)
Deafness
 Historically - isolation
 First attempts to educate deaf children – 16th century
 1749 French Academy of Sciences commission – are deaf people
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‘capable of reasoning’?
Difficulty – greater hardship than blindness (Helen Keller) “Deafness
cuts people off from people”
Campaign to eradicate sign language and force deaf people to
‘normalize’ through lip-reading, ‘mainstreaming’
Feared, shunned, abused, institutionalized, sterilized and denied rights
throughout history
Today, equal rights (education, voting, etc.)
Yet lingering prejudices? Still seen as ‘dreadful fate’? Still forced to try
to ‘normalize’?
As of 1993, deaf students read at lower levels in school and upon
graduation from high-school 3/4 are unable to read a newspaper. Only
2/100 go to university (vs. 40/100 in general population)
deaf vs. Deaf
deaf – “lacking, or
defective in, the sense
of hearing” (OED)
Deaf – member of Deaf
community/culture
(Other) Physical Disabilities
 In contrast with people who are blind or have (other)
physical disabilities
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Of the deaf people who marry, 90% take deaf spouses
When social scientists ask people who are blind or in
wheelchairs if they wish to see or walk, they tend more often
to say ‘yes’ - deaf people tend more often to say ‘no’ to the
equivalent question *contested empirical claim*
According to one survey, 86% of deaf adults said they would
not want a cochlear implant even if it was free
Arguments Against Cochlear Implants
 “Deaf people in this country have been fighting to gain equal
respect as citizens, and to have their language, ASL, recognized
and respected, and to give deaf children a wider choice of
options than the traditional pure-oral regimen imposed by
virtually all schools for the deaf and deaf-ed programs–and just
as soon as we get ASL out of the closet, get some recognition
and respect for it in the academic community and general
society, along comes the implant and a new boom in the most
rigorous kind of oral/aural approach. Some of us don’t see this
as technological progress, but the worst sort of backlash. It’s not
progress as much as a new twist on retrogression.”
– www.cochlearwar.com
 Autonomy
 Right to refuse invasive bodily treatments
 Right to refuse invasive bodily treatments on behalf of your
children
Deafness as Culture
“The world of deafness is distinctive, rewarding, and worth
preservation” (Dolnick, 1)
 Contrary to historical perspective on deafness
 Deafness is a culture/subculture like any other
 Deaf parents - excitement and cheering on discovering their
baby is deaf
 Desire to have deaf children (children ‘like us’) – choice not
to have children when not deaf or not likely to be deaf
 “birthright of silence” (Tucker, 7)
Deafness as Culture
 President of NAD – “Since “[h]earing is not a life or death
matter…[it is] consequently not worth the medical, moral
and ethical risk of altering a child”” (Tucker, 9)
 “An implant is the ultimate invasion of the ear, the ultimate
denial of deafness, the ultimate refusal to let deaf children
be Deaf…”
“…Parents who choose to have their children implanted
are in effect saying, ‘I don’t respect the Deaf community,
and I certainly don’t want my child to be part of it. I want
him/her to be a part of the hearing world, not the Deaf
world” (Dolnick, 3)
Deafness as Culture
 Strong reaction against cochlear implant technology
 Any talk of ‘cures’ is seen as offensive and misguided
 Hostility goes beyond concern over safety of the implants
 Many deaf advocates are against research into cochlear
technologies
Attempted Analogies
1.
2.
3.
4.
5.
6.
7.
Racial minority
Cultural minority
Socio-linguistic minority
Religious minority
(Other) physical disabilities and treatments
Physical variations that are not disabilities
Disease groups
Attempted Analogies
1.
Racial minority
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Deaf // Black, Asian, Native…
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“I’m happy with who I am…and I don’t want to be
‘fixed.’…In our society every agrees that whites have an
easier time than blacks. But do you think a black person
would undergo operations to become white?” (Dolnick, 1)
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Implications/Analysis?
Inherent vs. circumstantial disadvantages
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Attempted Analogies
2. Cultural minority - a group of people differentiated from the
rest of a community by cultural background, and usually
claiming or enjoying official recognition of their group
identity
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Deaf // Jewish, Hispanic, Caribbean, French-Canadian
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Deaf people “are no more in need of a cure for their
condition than are Haitians or Hispanics” (Tucker, 8)
Implications/Analysis
 “If I happened to strike up a relationship with a hearing person…I’d
have considerable trepidation about my [deaf] parents’ reaction. They’d
ask, ‘What’s the matter? Aren’t your own people good enough for you?’
and they’d warn, ‘They’ll take advantage of you. You don’t know what
they’re going to do behind your back” (Dolnick, 3)
 Specific objections:
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Dangers of isolationism and segregation - xenophobia
Not a real culture because too heterogeneous and diverse a group
Not a real culture because politically invented
“Cultist & Propagandist”
Culture exists and is important but won’t trump concerns about
quality of life or autonomy
Attempted Analogies
3. Socio-Linguistic minority (shared
language leads to shared identity)
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Deaf & ASL // French, Dakota,
Esperanto, Klingon
ASL - as complex and expressive as
any other language
Ideas in many languages can be lost
in translation (unique perspective on
the world)
Consider the following statement:
“When Gorbachev visited the U.S.,
he used an interpreter to talk to the
President…Was Gorbachev
disabled?” (Dolnick, 3)
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Implications/Analysis?
Other Analogies?
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Religious Minority
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Deaf // Jehovah’s Witnesses, Native Spirituality, Wicca
Deaf people have a world view shaped by their perspective
as a deaf person. Religious believers also have a world
view shaped by their perspective as a religious believer
In both cases, these perspectives limit some actions and
permit others
In both cases, these limitations can be significant –
especially as a minority in society
The limitations of deafness may even turn out to be less
than those imposed by some religions
Implications/Analysis?
Other Analogies?
5. (Other) physical disabilities and treatments
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Deaf // blind, paraplegic
Cochlear Implant // Glasses/contacts, prosthetic limbs
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Implications/Analysis?
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Difference between technology such as TTYs, captioning on
TV, flashing lights and cochlear implants?
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Changing the person vs. changing the environment?
Laser eye surgery
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Other Analogies?
6. Physical variations that
are not disabilities
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Deaf // left-handed
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Implications/Analysis?
Other Analogies?
7. Disease group
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Deaf // Breast cancer
survivors, people with MS,
alcoholics
Emotional bonding and
strong sense of community
Yet no-one would argue
against research into cures
for breast cancer, MS or
prevention of alcoholism or
deny that the eradication of
these ‘cultures of …’ would
be a great thing
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Implications/Analysis?
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Reactions Against Deaf Culture
Arguments
 Survey respondent:
“What the hell is deaf pride? Proud not to hear your child’s
voice, pianos, the birds in the trees? That’s not pride, it’s
bull-headedness and selfishness…I feel the implant
enhances my pride. I am proud to be overcoming what was
considered a severe handicap, proud to be part of a
community as a whole, not to a ‘club’ of narrow-minded
people” (Tucker, 9)
 Also:
“[m]y concern for my daughters’ futures is far greater than for
the future of ‘Deaf society’” (Tucker, 9)
Arguments For Cochlear Implants
 Autonomy
 Beneficence
 Justice
 Denying a child a cochlear implant may violate his/her
right to an ‘open future’
 Minimally satisfying life (Purdy)
Costs
 Tucker raises the issue of costs for supporting Deaf culture
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Special schools (because of opposition to mainstreaming)
Relay services, interpreters and captioning
Deafness costs society an estimated “$2.5 billion per year in
lost workforce productivity, $121.8 billion in the cost of
education; and more than 2 billion annually for the cost of
equal access, Social Security Disability Income, Medicare,
and other entitlements of the disabled” (In Tucker, 10) * in
the USA
Tucker does recognize that Cochlear Implants are not
cheap, nor is rehabilitation and training (approx. $40,000)
Costs and Implications
 What if accommodations for deafness are not
available anymore and yet some people want to
have deaf children?
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Consider: physical injury & negligence of
another – only successful if injury could not
have been eliminated by reasonable
measures (including possible surgery)
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Personal responsibility - society not
responsible (no special accommodations
required)
Individuals may be required to take all
reasonable efforts to eliminate or mitigate the
effects of the disability (or be denied special
treatment)
Costs and Implications
 Analogy:
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Manic depressive person
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Tucker
Currently, accommodation is justifiable as ‘leveling the playing
field’ in circumstances where no other options are available, but
in the case where technological advances ‘cure’ disabilities,
will/should this change?
“Why should the public and private sectors be
required to spend money to provide accommodations
for a person whose disability is correctable, when
correcting the disability would in itself help to level the
playing field for that person?” (Tucker, 13)
For Instance…
 UK Disability Discrimination Act (DDA) 1995
 Practical exceptions are noted
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“[A]n individual is deemed to be disabled, even if the
disability is controlled by medication or other medical
treatment, if the disability would have a substantial effect on
the individual’s ability to carry out normal day-to-day
activities without the medication or medical treatment”
“This rule does not extend to those with impaired sight where
the impairment is correctable by spectacles or contact
lenses or by some other prescribed method, whether or not
those aids are in fact used.” (Tucker, 12)
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Extend this?
Slippery Slopes
 Potential slippery slopes:
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Allow parents to deny treatment of deaf infants, selection for
deaf embryos (vs. non-deaf), selective abortion of non-deaf
fetuses, operation to deafen non-deaf infants upon birth
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Require treatment of deaf infants, selection for non-deaf
embryos (vs. deaf), selective abortion of deaf fetuses, nonvoluntary euthanasia of deaf infants upon birth
 Tucker
 Many of the issues raised here will come up again
in discussions of genetic testing and genetic abortion
Models of Disability
“Deafness is not a disability” (Dolnick, 1)
Models of Disability
1. ‘Medical’ Model
 Problem/illness/disease of individuals
 Role of medical establishment is to manage, treat, or cure
 Norm of human functioning (‘right’ way to perform a task)
 Source of disadvantage is impairment at individual level
2. Charity Model (more historical)
 Persons with disabilities are objects of pity and worthy of
charity
 Disability arising from bad luck more deserving of pity
 People with disabilities need to be ‘pleasing’ to society, to
‘play nice’, and remain within social stereotypes, grateful for
whatever they receive
Models of Disability
3. Economic Model
 Disability linked to inability to work and contribute to society
in an economic sense
 If you cannot work, you are disabled
4. Social/Minority Group Model (Disability Rights Groups)
 Like any other minority social group, people with disabilities
are subjected to prejudice, discrimination and exclusion
 Cause of disadvantage is social attitudes, stereotypes, and
prejudices (external to the individual)
 Social and physical environment has not been designed to
be as inclusive as possible
Models of Disability
5. Universalist Model
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Disability exists on a continuum of human abilities
Any individual can at various times in his/her life acquire an
impairment of some sort
Disability is part of the norm. It is an essential feature of ‘the
human condition’
Wide and inclusive sense of ‘normal’
Definitions of Disability
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“Want of ability (to discharge any office or function); inability,
incapacity, impotence” – OED
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“’Persons with disabilities’ means persons who have long-term or
recurring physical, mental, sensory, psychiatric or learning
impairment and who (a) consider themselves disadvantaged in
employment because of impairment or, (b) believe that a[n] employer
or potential employer likely to consider them disadvantaged in
employment by reason of that impairment…’ – Canadian Employment
Equity Act
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Americans with Disabilities Act: “a physical or mental impairment that
substantially limits one or more of the major life activities of such
individual; a record of such an impairment; or being regarded as
having such an impairment” {42 U.S.C §12102(2)}
Defining Disease
 Why?
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Disability and disease
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Disease states give rise to special claims on society
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Disease may be misused – blaming the individual for social
problems or blaming society for individual problems
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We want to cure disease, but we may end up trying to ‘cure’
diversity and difference
Disease
 ‘Drapetomania’ (19th century) – the disease causing slaves to
run away
 ‘Dysaesthesia Aethiopis’ (19th century) – hebetude of mind and
obtuse sensibility of body – a disease peculiar to negroes [sic] –
called by overseers ‘rascality’
 ‘Hysteria’ in women throughout history
 As recently as 1980 - DSM-III, as a personality--invariably female-described as histrionic, prone to exaggeration, shallow, demanding,
seductive, egocentric, romantic, and manipulative
 Numerous writers have traced this to a caricature male medical
view of femininity
Disease
 Example 1: masturbation
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Moral undertones to classification (‘you are deviant/bad’ to ‘you are
ill/defective’)
Sexual overindulgence was generally considered debilitating Hippocrates
Masturbation in particular was widely accepted as a disease from
about 1700
 Held to be the cause of dyspepsia, constrictions of the urethra,
epilepsy, blindness, vertigo, loss of hearing, headache,
impotency, loss of memory, irregular action of the heart, rickets,
leucorrhea in women, chronic catarrhal conjunctivitis,
nymphomania in women, changes in external genitalia… and
studies ‘demonstrated’ links to insanity, consumption, and
general debility – and even death
Broad and heterogeneous class of signs and symptoms
Treated with restraining devices, infibulation, circumcision, acid
burns, thermoelectrocautery, clitoridectomy, vasectomy,
institutionalization (insane asylums), castration, dietary changes,
sexual intercourse…
Disease
 Example 2: homosexuality
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Originally classified as a psychological disorder (declassified
from the DSM in 1973)
When homosexuality was identified as a disease:
 Criminalization
 Forced ‘cures: hypnosis, aversion therapy (nausea
producing drugs), electric shock, castration…
Medicine, Health & Disease
 Definition of disease:
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Naturalist – value-free, deviation from species-typical
functioning
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Ex// mammal
Normativist – value-laden, matter of subjective evaluation
and experience (socially and culturally influenced)
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Ex// weed
 Which of these is currently in use?
 Illness/disease
Defining Disease
 Merck Manual of Diagnosis and
Therapy / Diagnostic and Statistical
Manual of Mental Disorders (DSM) IV
 Medicalize = “To give a medical
character to; to involve medicine or
medical workers in; to view or
interpret in (esp. unnecessarily)
medical terms” (OED)
 "Since disease is such a fluid and
political concept, the providers can
essentially create their own demand
by broadening the definitions of
diseases in such a way as to include
the greatest number of people, and
by spinning out new diseases" Lynn
Payer Disease Mongering
Disease Mongering?
1.
Ordinary processes or ailments as medical problems
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2.
Mild symptoms as serious disease
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3.
Social phobia , criminal behavior, drug dependence, eating disorders,
alcoholism
Risks conceptualized as disease
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5.
Irritable bowel syndrome, chronic fatigue syndrome
Personal or social problems as medical ones
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4.
Baldness, pregnancy, menopause, aging, infertility
Osteoporosis (reduced bone mass), high blood pressure, high cholesterol
Disease prevalence estimates framed to maximize the size of a
medical problem
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Erectile dysfunction, female sexual dysfunction, hyperactivity in children/
ADD/ ADHD, PMS/ PMDD (Pre-Menstrual Dysphoric Disorder),
depression
Implications and Discussion
 Profit and disease
 Can we get rid of the social element in our definition
of disease?
Summary
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Cochlear Implants
VIDEO & family tree
Short history/definitions of Deafness
Arguments against cochlear implants
Arguments for cochlear implants
Definitions of disability
Definitions of disease
Contact
Prof. Kirstin Borgerson
Room 359S Munk Centre
Office Hours: Tuesday 3-5pm and by appointment
Course Website: www.chass.utoronto.ca/~kirstin
Email: kirstin@chass.utoronto.ca