It is an interesting issue because to the hearing world there is no doubt that a Deaf person is disabled - and in general they are happy to help from that paradigm. However, begin talking about culture and “rights” and “social barriers”, and often the defenses go up, and previously helpful people now want to argue the point.

Dianne, over on her blog Musings about Communication discusses how different Deaf people have discussed the issue, and identifies two groups in the discussion: internalizers [sic] and externalizers [sic].

Internalizers compare themselves to others and see themselves as lesser than others. They see what they can’t do, i.e. hear and talk and exert control by hearing and speaking. They see hearing people as people with the ability to decide how the world will work, including matters that affect Deaf people. When they have to do without, it is with the sense that the hearing society is at an advantage and they are only powerless, second-class citizens.

(In Social Psychology we called this an “external locus of control” - i.e. the world controls me.)

Externalizers see themselves as equal to others and limited only by others, not limited in themselves. They see themselves as responsible for whatever happens, and to find a way around obstacles. If a hearing person says “no”, they find another hearing person that will say “yes” and help them to achieve their goal. However, they will first try to achieve that goal on their own, because the direct route is quicker, but in a hearing-oriented world one often has to find an accommodation if available. When they have to do without, it is with a sense of personal failure.

(Or “internal locus of control” - i.e. I can influence my world, make choices and take the responsibility for self-determination.)

Interestingly she notes “both groups may see it useful to admit to a disability in order to obtain reasonable accommodations.” But I think that her quote from Rebecca Atkinson, British journalist and writer probably sums up the attitude of most Deaf.

“Granted, if everyone had the same impairment as me then I would not be disabled, because the world would be constructed exactly to my essential requirements. However, because I am in a minority, it’s not. And that is what renders me disabled.”

http://www.bbc.co.uk/ouch/features/deafness_disability.shtml

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Robert is now in London reading for his PhD in Linguistics, but is back in Australia for a few weeks, and decided to hold a workshop discussing the topic “Deaf Identity - where have Deaf Australians come from, and where are we going?”, described as “A discussion of our past, our present and our future, and our relationship with other groups in the community.”

He was expecting maybe 15 people, and instead around 200 Deaf, CODA, Auslan learners, student and qualified interpreters, and Support workers for the Deaf turned out! So the workshop turned more into a lecture with occasional comments from the audience.

Robert raised a number of interesting points, and has obviously been heavily influenced by Paddy Ladd’s book Understanding Deaf Culture: In Search of Deafhood (as have I).

He spoke about the decline of the Deaf Club, and how younger Deaf are tending to meet in pubs, and how that impacts the transference of language, culture, values and historical knowledge.

He mentioned the rise in the occurrence of Sign Language Interpreters who have not been raised in the Deaf community but, as a result of growing awareness and acceptance of sign languages, and consequential increase of tertiary study opportunities, see sign language interpreting as a professional vocation to be pursued but perhaps are less aware of how their hearing cultural background may impact the Deaf community. He highlighted in particular the case of mainstreamed Deaf students who require interpreters (and often only get teacher aids who may have no professional accreditation as an interpreter), whose only language model is that interpreter, and how the sign language they learn from the interpreter may differ from the Deaf community at large. And he wondered if perhaps these interpreter were now more “their” interpreters (i.e. interpreters of the hearing community, coming out of the hearing community) more than “our” interpreters (interpreters of the Deaf community, coming out of the Deaf community).

He also introduced the concept of colonisation of language, a phenomenon that occurs when non-native sign language users (such as the above mentioned interpreters/teacher aids), who are not raised in the Deaf community and may miss subtleties of inference in signs, are the primary language models for an entire generation of Deaf children educated in isolation in mainstream schools.

On a more positive note, he mentioned how at the recent Australian Sign Language Interpreters Association (ASLIA) Conference, 35 of the interpreters in attendance were Deaf interpreters (sometimes called relay interpreters) - Deaf people who can interpret from spoken language or high level sign language (such as medical or legal terminology) into sign language that is more accessible to Deaf people who are unfamiliar with such language. And Robert wondered if there might one day be a Deaf interpreter as president of ASLIA :).

Of course the age-old comments of the impact of technology such as the internet, networking sites like Facebook and communication tools such as MSN Messenger, Oovoo, Skype and email, and although they help us keep in contact with each other through the week, have probably contributed to the decline of physical meet-ups of Deaf people. But then also raising the question, have they in fact strengthened Deaf community in that we are able to be in contact with each other constantly?

It was a fascinating night, and was really intended to be a kick-start to intentional discussion in the community about the way the environment is changing, and how the Deaf community can positively use, respond and influence the changes to maintain community and continue the transfer of heritage down the generations.

I hope that we hear more about it - that Deaf people become actively involved in Intentional Community Building planning and doing; that the Deaf community remains true to the essential values of storytelling, visual communication, drama, and other aspects of the Signing Cultures, in the same way as Oral Cultures such as Indigenous Australians are now doing.

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My husband is Deaf, my kids both have hearing losses, and sleep like logs (and in any case, studies have shown that kids often won’t hear an alarm)…the strobe isn’t bright enough to wake up my hubby…

Well, someone in Japan obviously had a similar idea (they are marvellous at “thinking outside the box”, the Japanese, aren’t they?)

Enter the Japanese stinkerator … smellorator? … hmmm well anyway, it is a smoke alarm that sprays the smell of horseradish!

Shiga University of Medical Science Hospital cooperated with the makers and carried out experiments to see if the horseradish smell can wake up people from a deep sleep.

Fourteen people, including those with hearing disabilities, took part in the experiments.

In the experiment, 13 out of the 14 subjects woke up in less than two minutes after the smell reached their noses.

The people with hearing disabilities were particularly quick to wake up, with one person emerging from sleep in just 10 seconds.

What will they think of next?

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Tony, over on All the Young Dudes wrote,

“You see, the fear and resistance to the cochlear implant, is because of what it represents, and not just because of misconceptions or the technology per se. I wish people would understand this point. There is a lot more substance to these fears that the Deaf community harbours, than deafies and hearies care to admit.“

This incredibly insightful comment illustrates an issue that has gone largely ignored by many on both sides of the debate. The resistance comes from fear, but it is not, as often thought (or at least, not only), fear of the unknown, or fear of having something surgically implanted under the skin, fear of deafness being cured, fear of the Deaf community disppearing, fear of the loss of sign language and culture, or any one of the myriad of comments heard.

It is a fear of something far greater. And yet it is based on a history of which few Deaf people, especially younger Deaf people are aware.

Most Deaf people can speak about the Milan conference where Deaf teachers were excluded from participating in the resolution that resulted in the abolition of sign language in educational settings. But it is not often that this situation is fully considered.

To fully understand the oppression that occurred in this act, let’s consider what emotions it evokes if we try to translate it to other situations.

What if, at a conference of teachers of Indigenous children, all Native American (or Australian Aboriginal and Torres Strait Islander) teachers were excluded - locked out of the room - from a debate about the best methodology for educating Indigenous children? Can you imagine the media and community condemnation? And imagine the result was abolition of all teaching in indigenous languages and the teaching of all Indigenous culture because the Western teachers thought that was the best way for them to fit in with white society… even for children who lived exclusively within Indigenous communities and spoke no English.

It is hard to imagine that we would accept the banning of education in indigenous languages and culture, even if you are a person who does not see their value. It is impossible for me to imagine that Indigenous teachers would be shut OUT of the conference room while this issue was debated and voted upon. The Australian government just said “sorry” for actions like these!

Let’s make it something different… Imagine you are a teacher with a Buddist faith in a Buddist school. Imagine being shut out of a conference room while Christian teachers debated whether you should be allowed to teach the students in your school about Buddist beliefs!

Or a blind teacher who favours the use of braille for teaching literacy being shut out of a conference discussing the methodologies of teaching literacy to blind children and children with low vision when current educational philosophies are favouring enlarged printed English, and auditory and phonetical methods.

Is it even comprehendable?

Imagine the humiliation. Imagine the message that is implicitly communicated. “Yes, you have the same education as us, but because your eyes don’t work you are not able to discuss this issue objectively - you are biased.” Or worse… “your reasoning faculties are impaired”!

This is just one well known example that to me demonstrates where the suspicion might come from - there are many, many more, as a quick flip (if such a thing is possible!) through Paddy Ladd’s book on Deafhood demonstrates.

You may well say, “well, but, that would never happen now!” But it does. Daily. “I asked about sign language, but the doctor told me he would never learn to speak if I used sign language” - said a parent of a 4 year old just last year.

“He was threatening the police officer, so we had to put him in a strait jacket,” said the arresting officer (2006). “I was telling her I wanted to hang myself,” said the Deaf person. (Would we accept tape over a person’s mouth to stop them yelling?)

“He didn’t stop when we called at him to stop cycling without a helmet, so we restrained him,” (by two officers pulling their vehicle in front of the cyclist, and then tackling him to the ground).

“How can she drive??! She cannot live independently, she is too disabled!” said the psychologist of a Deaf woman of normal intelligence with cerebral palsy in her legs, and consequent limp.

All the above examples are true. All have happened within the last few years.

You see, when you live with constant oppression, constant incredulousness of your profession of ability, a certain amount of defensiveness is inevitable - as is a desire to live your life free of having others repeatedly saying “How can you say your life is as full and fulfilling as mine? How can you not see your deficiency” … a desire to remove yourself from those who would call your very identity “insufficient” and thrust in your face all the time the “opportunity” to (maybe .. if you are one of the lucky ones) become “sufficient”.

The cochlear implant is not a “cure” for all deafness, and it is still completely unpredictable. No doctor will risk telling you it is sure to work - even if it is implanted early (”gotta do it before it’s too late”). There is so much about language and speech learning that we simply don’t yet know.

It always has amazed me. Educators of hearing people constantly are drilled about presenting all material in visual mode as 55% of adults are primarily visual learners, and kinesthetic modes for those who need to “do”, and not rely solely on our traditional Western auditory mode of education. And yet I have never heard a proponent of “Auditory -Verbal education to the exclusion of all else” ever consider what might happen for those children who are not strong in auditory learning genes. And I have searched for quite some time, but have not found any research into this at all.

On a rational level, I am neither for nor against the cochlear implant - many of my friends use it, some implanted as children, others as adults. None of them speak as a hearing person, and those whose speech is relatively clear had clear speech before the implant. NONE of them hear without visual cues - again, those who can “hear” when lipreading could do that already before the implant. Those who could not communicate without sign language before the implant cannot communicate without it now. All of them love it and use it constantly. Most of them identify as Deaf, and use sign language as a preferred method of communication, particularly in groups.

On an emotional level I find myself filled with apprehension when thinking about the implantation of babies and children. I know it can sometimes result in an individual being perfectly at home in groups of hearing people, not missing information or relationships. I think it is the uncertainty of it all - and the hours and hours that must be invested in getting a child to practice speaking and hearing, when I feel that as a result they miss out on just simply learning, and being a child.

To return to Tony’s comment, I think the biggest fear I have with the implantation of children and babies is how it places the burden of being able to access the most normal things in life onto the Deaf individual. The unfairness of that expectation causes my hackles to rise. As Elizabeth Hastings, the former Australian Human Rights and Equal Opportunities Commisioner said, disability is a part of ordinary human community. Why, then, can’t we accept that it is ordinary? Why must we continually ask others to be that which we are not… “perfect”?

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For many people, when they find out they have a hearing loss the first thing they look for is a quick medical fix - a consequence of our “everyone has to be perfect, trust the experts they know best, there is an answer for everything” medical model of illness, disease and disability. An unfortunate side-effect of being able to offer an answer for some things is that we expect an answer for everything.

However, as the title suggests from Neil Bauman’s latest post, Hearing Aids Are Not the Whole Answer, So Why Do We Act as if They Are?

Neil mentions five areas that need to be addressed by audiologist with their clients in order to achieve the best outcomes:

1. Working through the grieving process with regards to the hearing loss so that the client is psychologically and emotionally adjusted to the reality of being hard of hearing. He notes that this first step is essential if the following four areas are to result in the best possible outcome for the client.
2. Get properly adjusted hearing aids if hearing aids will help - and he suggests 99.9% of people will be helped with hearing aids.
3. Get the appropriate assistive listening devices that are necessary to help in situations where hearing aids are not adequate. Directional microphones, hearing loops and FM systems can all help to block out background noise and help tune in to the desired source when the environment is noisy.
4. Learn to lipread (also known as speech reading), so that sound is augmented by visual cues to help you “hear” what is being said.
5. Learn which coping strategies work for you to help you hear and understand people. Adjustments such as getting close to the speaker, cutting out competing background noise, having light on the speaker’s face but not behind them, choosing round tables rather than square ones, will all help you to keep up with conversation.

It is important that both experts and people with hearing loss are explicit in their understanding that technology is just one of the many resources we have at our disposal, but that in the end (for the moment at least) there is no “cure” for deafness.

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In Australia, the rate of permanent hearing loss is around 20%, according to the Australian Bureau of Statistics. But in Aboriginal communities particularly, and for all Aboriginal peoples in Australia generally the rate is much higher. “The prevalence of ear/hearing problems, including total/partial hearing loss and otitis media (middle ear infection), was three times higher among Indigenous than non-Indigenous children.” (ABS “Health of Children in Australia: A Snapshot, 2004-05″)

Many factors contribute to poor health outcomes. In biological terms, the greatest risk factor for the early onset and persistence of otitis media is infection in the upper part of the throat behind the nose by multiple bacterial species and subtypes.

In Aboriginal communities with overcrowded households, infants are frequently exposed to siblings whose carry almost 100% of the major otitis media-causing bacteria.

In non-Aboriginal children, the body usually deals with pathogens of a low-dose infection, which, in turn, controls inflammation and limits tissue damage.

In contrast, early exposure of very young Aboriginal infants to large or frequent exposures to so many different bacteria provides constant stimulation of the immune system to inflamme the passageways, which damages the tissue but doesn’t destroy the bacteria. This begins a vicious cycle that may persist throughout childhood: early exposure, persistent bacterial infection, and chronic ear nose and throat disease. And in turn, such infants themselves become chronic carriers of the bacteria and go on to infect other, younger infants. This cycle is made worse by overcrowded and poor living conditions, lack of appropriate washing facilities, and limited access to appropriate healthcare services.

It is also made worse by the misunderstanding of western ways. It was a common occurrence in 2000 at least, for the Aboriginal children to swim in the sewage pond when the creek dried up. Had the government not intervened in the community there would not have a sewage pond… however, neither would there have been houses.

The problem is that hearing loss has very widespread impact. The “Bringing them Home” report into the Stolen Generations of Aboriginals stated,

Hearing loss is endemic in Indigenous children and linked to poverty. The incidence varies between areas, but an estimated minimum of 20% of Indigenous pupils in urban areas are affected by marked hearing loss resulting from otitis media. `Problems with hearing are one of the major causes of low performance in language skills among Aboriginal children and can also be related to behavioural issues’ (Groome and Hamilton 1995 page 25). Numerous reports, including those of the Royal Commission into Aboriginal Deaths in Custody and the House of Representatives Standing Committee on Aboriginal and Torres Strait Islander Affairs, have drawn attention to the connections between hearing loss, behavioural problems and intervention by juvenile justice or welfare agencies (National Report 1991 Volume 2 pages 364-8, House of Representatives Standing Committee on Aboriginal and Torres Strait Islander Affairs 1994 pages 325-31).

What is even worse is, as the Aboriginal Law Bulletin states,

Those affected by hearing loss are themselves often not aware of their disability, usually ascribing their communicative difficulties to not speaking English properly, cultural differences or others’ antagonism to them personally or Aborigines generally.

How horrendous is that?

And yet, it would seem that hearing loss may have been endemic in the Aboriginal peoples for some time. In an examination of the languages of Indigenous Australians, “it appears that Aboriginal languages are rich in sounds whose differentiation exploits precisely that area of hearing ability which is most likely to remain intact in sufferers of chronic middle ear infection…[that is] that the phonetics and phonology of a language have been shaped by the hearing status of the speakers” (Andrew Butcher, Flinders University: pdf document)

To rephrase - Indigenous Australian languages mostly use sounds in the hearing range that people who have otitis media can still hear - much, much moreso than any other group of languages in the world.

So we have a group of people who are particularly susceptible to ear, nose and throat infections, living in environments that make cross contamination almost inevitable, with little or no access to surgical intervention, amplification, speech therapy, or special education, being educated in Western style schools where “education is heavily dependent upon verbal language” (Massie, et al., 2004).

Before colonisation and Western interference, traditional indigenous learning happened outside (where is there is no sound echo), in one to one conversations (face-to-face, side by side), in the student’s first language (often accompanied by indigenous sign languages).

‘These communication difficulties have been a major contributor to the development of serious social and psychological problems.’ (Howard, 1993)

You think?

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For deaf people, by which I mean culturally Deaf, deaf, hard of hearing, hearing impaired - any person with any amount of hearing loss - the internet has been both a blessing and a curse.

It has created the opportunities for finding others who have similar interests, and assisted those with good (or at least ok) written language skills to communicate with groups that before may have been too difficult to find, and even more difficult to understand. Young deaf people use the instant messaging systems as much as any hearing youth use the telephone.

However, for those who don’t feel comfortable with written language, the internet has often resulted in fewer opportunities to meet face to face. In the past Deaf clubs were frequented so that the Deaf could catch up with each other after a week of living in the hearing world. Now both hearing and deaf use text messaging and emails so often that a perception of isolation has reduced. Attendance at weekly Deaf clubs is often declining, and at the same time ageing, as younger people accept the internet revolution more readily.

Now that YouTube and cheap web-cams have given the signing community an easy method of communicating in sign language the isolation is further reduced - but then our “friends” can be on the other side of the world, and a bit difficult to have a coffee with.

Another challenge is now finding these communities of like minded people. Previously they were so few, now they are so many… the internet is like a giant library of resources that no one has bothered to properly catagorise.

I guess that is why we wanted to establish DeafHub. We are trying to get the resources that are available on the internet into some sort of order - to review what is out there, and give the best, biggest, widest range of information so that the beast is tamed, and the communities that are fragmenting geographically can be found again in the “shared interest” arena.

Is there something you are searching for, and just can’t find? Why not drop us a line, and let’s see if we can help you find it… and at the same time, help others to find it too.

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