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Complex
issues
The Deaf community is considered to be a culture within
multicultural Australia and as such it has a distinguishing
language and a way of living which is unique. Technological
developments in the latter part of the twentieth century
have led to a re-thinking of what it means to be deaf
or hearing impaired. For adults who have been deaf all
their lives few consider cochlear implants. They have
learned how to communicate and function in both the
hearing and non-hearing community. For adults who have
lost their hearing later in life the cochlear implant
is a way of returning to the way of life they had before
their hearing loss.
For
parents of young children there are many issues to consider.
If the child is deaf from birth (pre-lingual hearing-impaired)
the issues are different to those who have become deaf
after learning to speak (post-lingual hearing-impaired).
The situation is also different if the child is born
into a deaf or hearing-impaired family as opposed to
a hearing family. The socialisation of the child (how
they learn to function in society) will be influenced
by this family situation and how the parents choose
to manage the hearing impairment.
This
extends to educational opportunities as well. The aim
of integrating hearing-impaired students in mainstream
schools is to enhance their socialisation into the hearing
community, but many in the Deaf community believe it
accentuates differences and students would be better
served in a specialist education centre.
Although
the social and ethical issues relating to cochlear implants
are complex there are two different cases to consider:
- implants
for adults who lost hearing in later life and make
their own decisions. These adults have already learned
how to speak, that is, they are post-lingual.
- implants
for deaf children where the decision is made by their
parents.
The
first case, implants for adults, is usually seen as
a positive step. The decision is made by the recipient
and is based on their own personal situation.
Implants
for children
The issue of cochlear implants for children, however,
is more controversial. The reasons for this include:
- human
rights
- cost
- loss
of Deaf culture
- education.
Human rights
It is a human right for every person to have access
to medical technology if it will improve their quality
of life. Children who are hearing-impaired fit into
two categories:
- pre-lingual
hearing impaired: those who lost their hearing before
learning to speak
- post-lingual
hearing impaired: those who lost their hearing after
learning to speak.
Dr
Gaye Nicholls says for post-lingual children:
rehabilitation
means gradually restimulating auditory language
processes they had previously developed. They need
to be taught again to understand language through
hearing, even though the signal they now hear is quite
degraded and different from normal speech. (Epstein,
1989: 81)
And
for pre-lingual children:
Children
who are deaf from birth, however, will be learning
speech and language for the first time with this new
signal. But they have two big advantages denied the
adult implantees. Firstly their brain has plasticity
to adapt to and respond to a new stimulus right up
to adolescence. Secondly, very young children are
in the normal period for acquiring language. (Epstein,
1989: 81)
This
is one view of implants for children. The Australian
Association of the Deaf (AAD) has another view and it
is outlined below. For further information refer to
the AAD policy
on cochlear implants.
AAD's
views on cochlear implant should be seen in the context
of the socio-cultural perspective on deaf people's lives.
Deaf people do not see deafness as something which needs
to be cured. Cochlear implant programs, however, tend
to see deafness as a pathological condition which is
open to medical and technological intervention. The
disparity between the two views of deafness has led
to much of the current debate about the cochlear implant.
(AAD, 2001)
Cost
The AAD believe that the large sums of money financing
cochlear implants could be better used to improve education
and literacy among deaf and hearing-impaired people.
The
needs of deaf people are many and diverse: special
education services, provisions for access such as
interpreters and notetakers, and technological support
such as telephone typewriters (TTYs) and television
decoders all enable deaf people to lead comparatively
normal lives and to contribute to society. A cochlear
implant does not necessarily remove the need for such
services.
(AAD, 2001)
Loss
of Deaf culture
There is fear from the Deaf community that there will
be a loss of Deaf culture. AAD believes there is a lack
of understanding by parents and the medical profession
of the value of Deaf culture and an assumption by hearing
people that because deaf people are different they are
inferior and want to be able to hear. The Deaf community
believes making everyone hearing is reducing the diversity
in our society.
The
language and culture of the Deaf community was recognised
in 1987 as part of Australian multicultural society.
(National Policy on Languages 1987)
For more information about deaf culture:
http://www.vicdeaf.com.au/aboutus/deafcommunity/deafcommunity.htm
Education
There is controversy over how deaf children should be
educated:
- aurally
using hearing aids
- orally
with lip-reading
- using
sign language.
Many
in the Deaf community feel deaf children should be educated
in a way that makes use of their talents and abilities
rather than focussing on abilities they lack through
oral education. Education materials are produced to
enhance the transfer of information and may be presented
in three ways: Auslan, signed English and spoken English.
Students
with a hearing disability may be taught in specialist
education centres or in mainstream schools. However
the current trend is mainstreaming for deaf and hearing-impaired
children, including those with cochlear implants.
While
the Internet offers educational opportunities for most
people, those with disabilities may need additional
software and hardware devices and well-designed web
pages to gain similar opportunities. For example, for
students who are deaf or hearing impaired, audio-based
elements on the Internet are useless. However a text-based
narrative can be provided. The same situation occurs
with video clips, while they may have the benefit of
the visual element they will need a text-based narrative.
In Melbourne in February 1995 the An Enabling Vision:
Open Learning and Students with a Disability conference
was convened. One of the conference outcomes was a
recommendation for "the development of standards
and guidelines which would assist with uniform advancement
of open learning for people with disability. Standards
and guidelines should apply to both public and private
providers of education and training." In particular
for the "development of standards for all aspects
of communication technologies and delivery systems."
This original concept was broadened to include hardware
and software aspects of Information Technology. The
aim now is the "development of an Australian
standard for the design of hardware and software for
universal access that will ensure that the information
superhighway and all the benefits are available
to the broadest possible range of users."
As a result of this post conference process, a group
facilitated by the Open Learning Technology Corporation
(OLTC) has been working on a developmental draft paper
for submission to the Australian Standards Association.
(Special Education Directorate, 2001)
For
further information on accessiblity and computers see:
Adaptive technology resources centre (University of
Toronto)
http://www.utoronto.ca/atrc/
Computer resources for the hearing impaired
http://www.apple.com/education/k12/disability/hearing/
Accessibility features
http://www.apple.com/education/k12/disability/easyaccess.html
Medical
ethics
The ethical issues related to cochlear implants raise
such questions as:
- the
ethics of medical procedures:
Does it benefit the patient?
Is the patient able to make their own decisions?
Will the implant cause physical or social harm?
- the
ethics of viewing a disability as a negative quality.
In
the value-laden process of medical evaluation, disability
is assumed to be negative; objective clinical data are
given greater weight than the actual experience of the
individual with the disability.
…The
view articulated by the World Federation of the Deaf
and proponents of deaf culture rejects the infirmity
model of deafness developed by medicine. They hold
that theirs is a minority experience of language and
culture that differs from and is possessed by mainstream
society. Indeed the deaf claim that the cochlear implant
is just another example of the values and language
of the majority being imposed on a minority. (Stewart-Muirhead,
2000: 1)
Ethical
decision-making regarding cochlear implantation in
young children needs to be examined at both the individual
and societal levels. The discussion must honour the
contribution of all the major stakeholders. Researchers,
clinicians and the public must read beyond the excitement
of cochlear implant technology and temper enthusiasm
with serious ethical reflection. (Stewart-Muirhead,
2000: 2)
- the
ethics of using animals for medical research
Should technology be tested first on animals before
human clinical trials begin? Graeme Clark performed
experiments on animals for ten years before experimenting
on humans.
Activity
1. Is the cochlear implant life-sustaining or life-enhancing
technology?
2.
Debate the following topic:
It
is acceptable to use animals for medical experimentation
if there are potential gains for humans.
For
further information on the ethical and social issues
of cochlear implants check these sites:
US
documentary: Sound and Fury
SBS
Insight: Sound Decisions.
Deaf
World Web CI articles.
It
should be remembered that cochlear implant technology
is rapidly changing. When you read comments about the
implant, you need to examine which cochlear implant
technology was used. A recipient in 1985 may have a
different experience to someone in 2000.
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