dianrez's Xanga

Reflections on Last Week's Blog

Sun, 21 Jun 2009 16:30:42 GMT

Protest or Censorship?

The response to my blog "Enough with blogs about CI surgery!" was interesting. Not only were there both pro and con responses on the blog itself, it spilled over into other blogs as well.
http://aslci.blogspot.com/2009/06/enough-with-ci-blogs.html
http://radio666fm.com/mephisto/?p=828

The first responses were positive. It touched a nerve in other Deaf people also sick of blogs about CI surgery and its skewing focus in the lives of d/Deaf people. Then came rather defensive responses: some saw it as an attempt to censor DeafRead to eliminate CI blogs, asserting instead that it is a part of the d/Deaf experience and that it definitely belonged in DR, and that one can simply skip over them using the Custom feature of DeafRead.

No suggestion was made to censor at all. My blog was a protest: The CI surgery blogs imply that hearing is necessary in order to become a competent individual. Effectively, this is a medical model that ignores all that Deaf people have accomplished through the generations without aids.

It also seemed that DeafRead was moving away from one of its original premises: to showcase the culture and accomplishments of Deaf people. Cultural topics were losing ground to medical topics. I wondered if uninvolved people reading these blogs might get information that supports a disability perception by the majority.

A Call for Respect, not an Attack

Some also viewed last week's blog as an attack on CI users and mentioned radicals such as those in DBC, AFA and the Deafhood movement.

Far from it. We know that CI wearers are increasing in our cultural community and that future generations will have an even larger percentage of CI users than our hearing aid wearers. As for "radicals", we must define the term first. Offering my definition as a starting point: a radical is a person who is unreasonably one-sided and does not take others' viewpoints in consideration. A radical is an extremist, favoring drastic reform immediately.

While the views of these individuals may make others uncomfortable, they all are after the same goal: respect for deaf people, respect for American Sign Language, and inclusion of ASL in early childhood education. If some of their leaders are critical of the CI, they are saying it is overused, hyped, and involves a restrictive therapy that allows no sign language. Does this criticism make them radicals? Are they representative of the organization?

Part of the problem is that these Deaf groups do not have a clearly written position representing their organizational view, so people are attributing extreme anti-CI sentiments of a few members to the whole organization. By labeling them radicals, they are then dismissed as crackpots. Their original premise, RESPECT AND INCLUSION, is lost in the confusion.

Violence?

The topic then abruptly shifted to violence, brought up by pro-CI bloggers who said they had been threatened, and following that, another respondent said she had heard of five CI parents who had been threatened.
http://aslci.blogspot.com/2009/06/where-is-line.html
http://radio666fm.com/mephisto/?p=835

My initial reaction? Skepticism. Up to now this had been mentioned vaguely, without facts or reports to cite, and seemed intended to validate their position as heroes fighting Deaf radicals for the good of humanity.

Well, I don't know.

We've seen in the news sickos causing deaths on campuses and in workplaces. We've seen extremist groups attack buildings, killing people in them. Who am I to say that this cannot happen in the highly polarized d/Deaf community? Hmmm? Well...
..........
I came across a nutcase known for blog rants against the CI. It was at a Deaf festival and this person seemed an unlikely candidate for the term "crackpot" at first. Within the first few minutes, though, it became obvious this was no normal-thinking person. An emotional, determined, on-a-mission obsession. Histrionics of "I will fight for defenseless babies who are innocently born to parents who not accept them as God made them!" "I will not give up on hard fights!" These were the milder things this person said, but the eyes held a glint of paranoia. This is not who Deaf people want to speak for them, and this embarrassing person has been banned from online forums. Personally, I don't think this one is actually planning anything worse than verbally making it difficult for others. (Unfortunately, the diehard CI blogs use this person as a blanket example of "Deaf Culturists" that they must fear and fight against.)
..........
So, it would be safer to err on the side of taking threats seriously, just on principle.

While we are talking about threats (which was brought up in a divisive way,) we have a right to ask for more specific information. Names? Locations? Cyber addresses? Background? What led up to this threat? Who are these people and what harm can they potentially do? How many people, or is it just one or two? What can we do about them? How can we discourage and disclaim this so that people will listen to us?

The reason many of us did not respond to past mention of threats is probably that it is foreign to our experience. We just did not see any, and wondered if those who mentioned it somehow exaggerated it or brought it on themselves by their provocative comments. That doesn't make it right, though. Violence is never acceptable, no way, nohow. (If those so inclined individuals are reading this, please know you are hurting the cause of Deaf respect and acceptance, and are actually being used by some CI extremists to discount the rest of us.)

Discourse is Healthy and Progressive when one Listens.

An advantage of sharing blogs with opposing views is that we tend to come together on points of agreement. Examples:

I personally have come to accept that the CI has some value but still hold out on how this value is measured and by whom.

Certain CI bloggers have come out and said that ASL has value, but still reserve judgment on who needs it.

Parents have said that the "radicals" have important lessons to pass on about past mistreatment in education, but they still say today's young Deaf generation is different than any in the past.

More Deaf people are accepting that ASL is not for everybody, but still believe that it belongs in the child's first offerings.

Parents, regarded at first to be unwitting and credulous people desperately trying to find a cure, are now seen as mostly involved people asking questions and making informed choices.

The dialogue needs to continue, and fences that stop it need to be taken down.

Enough with blogs about CI surgery!

Sun, 14 Jun 2009 18:04:26 GMT

Medical and cultural views on being Deaf

These two viewpoints on being d/Deaf couldn't be more opposite. In the medical view, one focuses on the deficit (loss of hearing) and curing it. In the cultural view, the person is accepted as a Deaf person and the most sensible language is used. Sign. In the medical view the person is brought to a standard or as close as possible. In the cultural view the person is appreciated for who he is.

Actually, the medical view is a demeaning one. It defines the person by his nonfunctioning ears. The ASL sign "box-mouth-box ears" is apropos because it means focusing only on the ears and the speech. Nothing else is considered.

Not considered is the person who may be intelligent, creative, skilled, experienced and productive. All that matters is the aforementioned two parts of his anatomy and their function.

Oh dear, Aunt Matilda is talking about her operation again!

Too many bloggers talk about their surgical experiences and go into detail what they go through in recovery, mapping, travel to appointments, in handling complications and breakdowns, and even in hearing birds or insects. That may be interesting to them and to others having similar experiences, but does not explain who they are.

An example of a medical focus is Lyndon B. Johnson, here showing off his gallbladder surgery scar. This man may be President of the United States, but here he is a patient obsessing over his midsection, showing it off as if battle scarred. In this instant the world recoiled: is this the leader of the free world so undignified as to pull up his shirt and demonstrate the gory details of what was done to his body? I imagine that cochlear implant patients feel a similar need to show off their experiences and scars, but, please, life and the Presidency are far more than such physical details. Long after we are dust, the world will remember our accomplishments longer than surgical experiences.

Far more interesting is if they revealed who they are, what they are doing, their opinions, and their life-fulfilling experiences apart from their surgeries. In the case of parents writing about children, there is an emotional aspect that makes one uncomfortable to read about...because of the expense, time, emotional investment and parental uncertainity in them and leaves one wondering if they are missing something. Even at two or three years old, children are individual personalities with varied characteristics.

People, not scars!

I'd rather hear about Beethoven and how he worked by imagination. I'd rather hear how he managed his professional life, his creativity, earned his living, and related to other people. I'd rather hear about the kind of person he was and where his creativity came from. That he held a stick in his teeth touching the piano as he played is relatively unimportant compared to the accomplishments he made. Could you credit his symphonies to that stick? Would the same stick enable another person to compose equivalent works?

Similarly, I want to hear how little Adam took apart a toy and manipulated its parts to see how they work, or how Kathy observed a street artist and did her own interpretative work, and to see the work itself. I want to read the first scribblings of young Mark. And tell me that the baby figured out how to reach the doggie by rolling all the way across the room. And I'll tell you how my deaf baby would scoot under furniture on his back to examine the underside and that he now is considering automotive mechanics at age 21. And all of these would happen anyway whether or not the child had been implanted.

I want to hear how a teen or adult CI implantee is sorting out his hearing and deaf experiences and coming up with a new perspective. I want to hear how he is resolving conflicting perceptions and community expectations. I want to hear about new ideas for future generations to work upon.

Are the "bad old days" truly in the past?

Back in the hearing aid and oralism days, deaf children were constantly evaluated in their hearing, use of aids, their speech progress, were scrutinized, corrected and pushed and pulled, and grouped not by intelligence but by their facility of speech and residual hearing. I am told this does not happen with cochlear-implanted kids, and that today's enlightened teachers are focusing on the natural environment with CI-aided hearing. Well and good, but the "box-ears-box-mouth" focus is still there. Anxious parents and pressured teachers are aware that what comes out of the mouth and what information goes in the ears are paramount, and the child as a person is secondary for the first few AVT-dominated years. That has to leave an indelible stamp on the child's personality. Add to that the prohibition against ASL during AVT therapy and one can see the effect of a restricted environment during a critical period of development.

There is also the possibility that the CI ultimately gives a semblance of hearing akin to being hard-of-hearing, and we are all aware of the marginal existence of today's HOH people. Are the CI kids being prepared for a life that is neither here nor fully there? Is supplementing with ASL enough insurance to avoid this marginal feeling? Are the CI kids being psychologically prepared to handle the challenge of expert guessing and incomplete hearing? Are they being taught that they are still whole and capable people, regardless of the level of hearing and speech they may attain?

The guy is deaf, get over it.

The cultural model teaches that being Deaf is okay, that to have less than normal hearing or different speech is also acceptable, and that it does not reflect on oneself in any way. The box-ears-box-mouth concept is irrelevant as a measure of one's worth. The cultural model teaches self-respect; that there are Deaf people who are excellent models of adaptability and accomplishment and that oneself can become a worthy model for others, too. Tools such as hearing aids and CI's are only a small part; treated as minor assets or necessary annoyances or even optional devices. No emotional aspect is attached to them; no more so than for glasses or shoe inserts.

My wish for the upcoming CI generation is to know that although they may have more options than the generations before them, they are still welcomed along with their families to the Deaf Community to make their own unique contributions, and that ASL is the way to ensure this resource is available to them. I hope they are not being fed incorrect information such as that Deaf people are limited, or living in a lonely world, or are deprived of opportunities. Nor that they are successful because of the CI. Nor that they have to meet the expectations of the Hearing community even if it does not mesh with their own capabilities. And my wish is for all d/Deaf people to unite in telling the hearing community to see us as capable individuals unrelated to and regardless of our hearing ability.

The CI, Audism and Deaf Credibility

Thu, 21 May 2009 19:55:19 GMT

The CI controversy

"Audists!" "Hearing supremacists!" are some choice words being flung about. What caused this? Some hearing legislators up in Wisconsin saw that some parents were getting free CI's for their children but others had to pay tens of thousands of dollars. The lucky families were covered by state health insurance or top-quality health insurance; but the others had none or limited insurance. So the civic-minded legislators decided to equalize things and passed a bill forcing all insurances to cover CI surgery for children. Hearing parents celebrated but some Deaf-culture people raised a ruckus.

Who is this bill hurting? Not us. What's the big deal? Destruction of Deaf Culture, ASL, that? Come on, get real. AGBell with his millions of dollars failed to destroy Deaf culture even as schools went oral for nearly a hundred years and are now adopting sign language again. The hearing aid and its ridiculously exaggerated advertising failed to make a dent in the Deaf community as thousands of them were shoved into drawers. Mainstreaming took thousands of Deaf children out of schools for the deaf, but they came back in increasing numbers years later. Even today oral deaf people are expressing wishes to learn ASL and be accepted in this mutually nurturing society.

This bill has nothing to do with forcing the CI on Deaf adults. It still remains a choice of a limited group: parents. There is a growing consensus today that the CI helps more than it harms the Deaf community: it gives people one more tool to gain information, it does not affect the solidarity of the Deaf community, and more parents are accepting that ASL can also benefit children with CI's.

Deaf Credibility

Where does that leave the Deaf Community? With egg on our faces because we protest. We risk being dismissed wholesale as crackpots even if many of us are neutral today about the CI. The reason is that Hearing people are overwhelmingly supportive of hearing restoration. They may think, if we allow some people to remain deaf, what will happen to ME if I were to lose my hearing? With the pea-brains that Hearing people have, it is remarkable how their influence affects everybody else. We need to pick our battles carefully, and fighting an expectation that everybody has a right to five senses isn't a winnable one.

How the anti-CI movement could backfire

Consider this scenario: hearing employers checking first if a Deaf applicant is wearing a CI. Why? Avoiding the problem of a deaf worker asking for interpreters or crying "audism" on the job. Or Deaf people being considered limited if not wearing a CI because of overly sensational publicity about its opposition. We could end up under worse pressure from the Hearing community to get implanted. We laugh today at the cartoon Mr. Magoo blindly blundering about without his glasses, but the hearing society will laugh at Deaf people goofing up things without CI's.

It's lack of knowledge and audism, not the CI that we must fight.

Let's cool it, friends. Stop bashing the CI and let's start shooting down misconceptions such as Wisconsin Rep. Cullen's muddle-headed remarks: “This (CI coverage by insurance) bill is going to allow children to keep their hearing, to become members of society, to go to school and keep a job.”

THAT is what we must fight, the assumption that we cannot become members of society, go to school, or keep a job without hearing by the CI. The prevailing Hearing attitude that being Deaf is unfortunate and pitiable is our biggest handicap, not the CI. We have to prove, over and over again, that not hearing is simply not a problem for us, given a fair chance.

The CI is just one of many technical tools available for d/Deaf people and itself is no threat to us--beside its drawbacks because of surgery, lifetime maintenance and occasional failures. It's time we all got off that rickety bandwagon and start building up our credibility so that parents, administrators, professionals and teachers listen to us.

We need to tell people that--

the CI hype leads to overexpectations and unrealistic perceptions by Hearing society.
Sticking a CI into kids does not magically make d/Deaf people disappear from the school system, the community or the family.
the CI industry has a strong element of commercialism and inflated expectations and is to be regarded with caution.
the CI does not give normal hearing. It requires frequent adjustment and constant adaptation only to give somewhat variable hearing.
the CI has limited hope for deaf people to have the advantages of hearing people. There will always be shortcomings and limitations in communication.
people who wear CIs still need special services such as assistive devices, communication aids, and are still deaf when the CI is off.
children with CIs may have some benefit in mainstreaming and oral education, but visual language (reading, writing, and visible communication) will still be useful.
children with CIs need a full spectrum of language input, not restrictions such as mandated by AVT.
a flexible approach is needed including all methods with the aim of tailoring for the individual at different times.
ASL itself is not a threat to language skills of CI children, contrary to what some say.
ASL is a cultural asset cherished by Deaf people and is a beautiful, well-loved and freely expressive language.
Deaf people have historically functioned equal to hearing people. They work, attend college, raise families, enjoy life, and live independently. Addition of the CI is not required for this, but can be regarded as an enhancement.
There will always be poster children in every method, every school and every therapy. Their presence does not prove that any one is best, including those that utilize CI's.
Consideration of the individual child, his needs, his abilities and gifts, and his family's ability to give ongoing support is important in considering what method to emphasize. It is imperative that all available tools be given for a broad base.
The history of deaf education has important lessons to offer today's CI generation. It would be tragic not to learn from the mistakes of the past.
Getting to know Deaf people is a rewarding and interesting experience for parents and community members.

In addition, we need to educate Deaf and Hearing people and families of Deaf children about audism.

Like racism, it is a powerful, emotionally loaded word used sparingly to name a problem; with a calculated intent to change the situation.
Audism refers to values of the Hearing majority being used to oppress Deaf people, to deny opportunities, and to limit life activities unnecessarily.
It is not correctly used to refer to accidental, ignorant, unthinking, or unintentional actions, nor to refer to horizontal oppression between Deaf people
Audism is not cured by the CI, nor is it caused by the CI or any other hearing devices, but is caused by attitudes.
It is reduced by effective public education, intelligent legislation, and critical awareness of how proposed changes can affect us.

Sometimes we can become overly concerned with small details and miss the larger issues which have farther-reaching effects. Let's keep our focus on the whole picture.

How Oralism Divided the Deaf Community

Tue, 12 May 2009 03:41:19 GMT

The hard sell of oralism in the middle of the 20th century was something I grew up with. Hearing people have a natural bias; they cannot think of living in any other way same as we cannot think of living without our sight. Remember how salesmen would play on our weaknesses to sell us cars, furniture, clothing and jewelery? That is how the oralist group works--including the industries, the professionals, hearing evaluators, teachers using oral methods, principals. They play on the weakness of parents even to naming their schools. Take a look at Chattering children in Virginia, Hear-ME-Now! in Maine, Hearts for Hearing in Oklahoma, and Child's Voice in Illinois.

Teachers told us when we were young, "You talk so well. So perfect, perfect! Not like those people who use ugly sign language." (making grotesque wigglings with the fingers) Glossy, four-color brochures were found in offices and mailed to homes of parents touting the benefits of new hearing aids. They were the most glowing of junk mail, picturing delighted parents and happy babies all with their mouths open. One was expected to be convinced that the latest hearing aid was THE breakthrough that would miraculously result in talking children. Magazines of professional associations serving the deaf contained full-page, full-color hearing-aid advertisements. Daily newspapers invariably had one-column-by-three inches ads in boldface: "DON'T BE DEAF!" as if it were some terrible disease. (I grew up with an instilled horror of being considered one of those ignorant, weirdly flapping-hands people.)

Among them would be expertly designed flyers and brochures from the AGBell association. They ranked right along with the John Tracy Clinic in information mixed with thinly disguised promotion of hearing aids and services. They contained pictures of sunny rooms filled with toys, happy children and smiling teachers. I used to feel slightly sick to my stomach on seeing these and my teeth hurt from their sweetness. If I expressed distaste, my parents would shame me out of it. "These are nice people who work hard at helping deaf children!"

Moving through school, I was barraged with a steady stream of "you are so smart, you're better than those others" always with a reward for talking. If I had any useful hearing, that would have been complimented like my better-hearing friends, but instead I received compliments on a shiny new hearing aid or new earmolds, or a new hearing aid holder. Some days the praise would be limited to the mere fact that I was wearing the thing. My parents were told in PTA meetings, "Never allow your child to sign or associate with those who sign. It will have a terrible effect." Warnings were repeated, "Sign language is of the past. Discipline in speaking is necessary for a successful future." "Do not sign or they will not learn to speak." What a burden to lay on parents, but they invariably bought it since they wanted their child to talk like an intelligent person.

Was it possible to enter a school for the deaf with a worse set of attitudes? I had no difficulty picking up fingerspelling, but had a priggish attitude toward signing that was fostered by a school that used the fingerspelling-only approach. This did not sit well with fellow students, for they signed behind the backs of the teachers and derided me for not doing it, too. My attempts to speak in class were made fun of even by students that could talk better. I had to fit in by learning that this was oralist philosophy--considered false, pretentious and never acceptable in the Deaf school community. My fellows saw through me and systematically knocked the oralism out of my head. Just as teachers mocked sign language to me, my Deaf classmates mocked me with gross-looking mouth flapping, too-intimate views of dental work and tonsils or lack thereof. When that wasn't exaggerated enough, forearms would be flapped together in imitation of hippopotamus mouths opening and closing. It took weeks to learn manual communication, but years to become a full member of the Deaf community.

That was for the lucky oral deaf people who eventually were accepted as part of the Deaf community. As I finished college and worked as a professional, I met more oralists who were still isolated in the Hearing community. They were afraid of offending their parents, some of whom were dedicated and aggressive. One parent slapped my desk when I used sim-com with her young adult deaf daughter and ordered me not to sign. Some young oral deaf went to work or a few went to hearing colleges, but hit roadblocks. I visited one who had difficulty at work because she did not know how to alphabetize files and thus refused to leave home. I taught her, through writing on paper, to fingerspell groups of letters and memorize them that way. A college student had social problems and expressed intense loneliness. I offered her support, but there was little to be done otherwise until she decided to transfer to another college that offered more services. Some oral deaf saw no future in the Deaf community, others needed to be introduced very slowly before they could overcome their bias against sign and be able to meet others like themselves.

At this point the most ardent supporters of the CI might say that they successfully integrate into the hearing community and thus have no need for sign or being part of the Deaf community. I have no problem with this, if it is true. For many, it is not, and these are lost people indeed. In talking up the benefits of aided hearing, one must never overlook those that it does not help.

The credo that AGBell and its subsidiaries pushed now seemed a travesty that suppressed the vitality of humanity and limited expression for too many Deaf people. The mistaken do-gooders fueled by philanthropic businesses obtained revenue in the belief they were saving deaf people from a life of isolation. The paradox is...it actually increased isolation and depression. What if benefactors focused instead on how deaf children can connect to the community, and considered any form of communication a success? That flexibility itself is a goal? What would have been the effect on the Deaf community? Instead of a deeply divided community, we would have a heterogenous, widely varied and mutually accepted people.

Consider the village of Chilmark, Mass. in the 19th century. There Deaf people were an accepted part of the community, everyone knew some sign and those that talked, mixed it with sign. To be Deaf there was to be a member of the whole community rather than a separate group. It is my argument that if not for Milan 1880 mounting an assault on sign language and a media war promoting oralism, our community would be more inclusive and more accepted in the hearing world.

There is work to do to recover from that historic setback. Begin with the parents in the maternity wards and welcome them into an all-inclusive atmosphere with options all equally acceptable. Mentor whole families to promote a Chilmark-like acceptance of everyone as equals. Fight the public misinformation from hardcore oral/aural adherents and uninformed media people. Teach deaf children that the hearing world is accessible and open to them. Promote schools that offer flexibility as part of their strategy. Save schools for the deaf and open them to include hearing siblings and community children. There is more to do, but only a few places to begin. One of them is to replace all oral/aural agencies eventually with more inclusive programs. In the light of new information and flexibility, such institutions will fade as did the Tyrannosaurus Rex.

A HOH View on Deaf Activism

Thu, 30 Apr 2009 10:10:52 GMT

Michelle and I have been good friends since we were teens at a local high school. Back then interpreters were not common, so she passed me notes in class. She confided that she had a hearing problem and in the years since has experimented with various devices such as the TTY and CapTel. Today she is an active member of a HOH group and answers questions from the community as part of their public outreach. Although she lives in the hearing community, Michelle learned some sign language to keep in touch with her Deaf friends. We keep up a lively correspondence and bounce ideas off each other often. Here is a sampling of her recent remarks about the AFA rally earlier this month.

"...Hearing people don't "get it" when it comes to Deaf Culture, the importance of ASL, and other related matters. When hearing people see Deaf protests and hear words such as "audism", "paternalistic" even "self determination" they still don't get it.

"Most hearing people think the Deaf fight is not rational. ...In other words unless hearing parents have a Deaf child it's a non issue and the picketers are just another crazy fringe group that doesn't really have an impact on them (hearing) or their lives.

In fact some see it (Deaf activism) as a lack of understanding of the world and even childlike behavior (yes, paternalism rearing it's head). Most hearing people think the Deaf fight is not rational."

"There is also some disinterest when there are activists heading out to Albany or Washington in wheel chairs and the like. Basically, the "able bodied" see a group of people who need a lot of help from "normal" people to rant about the fact "I can do anything"- it seems like an oxymoron to a huge segment of the population.

Unfortunately deaf activists are seen much the same."

Michelle is describing Deaf activism as it appears from the Hearing side. We need to listen to people like her in order to design a media war against audism. She talks about hearing parents of deaf children:

"Parents of hoh/deaf kids are a different matter.

"I receive emails all the time from distraught parents who have either just found out their baby is deaf or hoh or parents of hoh teens looking for resources as their child is the only hoh kid in the school and they are feeling the pinch. ...although they see the resource people* as being intelligent and well meaning, the parents don't get it.

"They can't understand how "those people" can be happy about a child being deaf or severely hoh.

"There is a big mixture of (as you know) guilt, anger, frustration, helplessness and utter panic and confusion. They don't get it.

"I myself find it very interesting because although I understand it on one level some parents view their deaf child as somehow marked for life or something worse, I find it hard to understand the anguish and the thought their child is doomed. I would imagine, however with time the panic subsides and as their child grows the parents become more educated and aware and hopefully attuned to their child..."

(*professionals in local programs for deaf children)

Michelle touches on how Deaf and HOH/hearing groups can work together:

"In our committee meetings there is always discussion of how to bring in the Deaf community and we wonder how much inclusiveness is wanted on the other end .

"Bottom line I would prefer that the hoh not be lumped entirely into the hearing person's viewpoint because most are at least open to understanding the Deaf views, even if they don't really understand.

"The HOH can become allies to the Deaf community if the realities of the history you have gone through is completely understood. I can also fairly say that in general the Deaf community is recognized as an entity unto itself...

"What our chapter would like to see is both of our groups coming together and working toward common causes ... in my opinion, the hoh need to fully understand from where the Deaf community is coming, but there isn't a spokesperson who can "get through" to some as it is a difficult for most to comprehend. ...Most hoh people go to great lengths and expense to hear and function in the hearing world so the "enjoyment" of being part of Deaf Culture is totally foreign."

There you have it. The biggest divide between the HOH/ hearing communities and the Deaf community is the medical viewpoint. They feel it is a problem to be cured, we feel it is simply a way of life. We need a connecting person who can explain both sides to each other.

How can we bridge this divide and add our numbers together to empower ourselves toward our common goals?
We focus on the goals, not our cultural or lifestyle differences. We find ways to communicate, even if it must be by writing or use of interpreters or a mixture of sign and lipreading. We get together, identify the targets of our needs, and present a united face.

This is important. The HOH, late-deafened, oral deaf, and friends of theirs are a bigger group than the culturally Deaf, but share the same problems that we do. We need their involvement, and they need ours.

Following are related blogs about HOH vs. Deaf viewpoints with some possibilities for activism as a united force:

http://ahearingloss.com/2008/07/22/deafhood-a-late-deafened-viewpoint/

a discussion of the cultural differences and the numbers on both sides

http://ahearingloss.com/2009/04/17/is-there-a-hard-of-hearing-culture-by-shanna-groves-the-lip-reader-blog/

the original article that kicked off the discussion

http://deafpundit.wordpress.com/2007/10/01/revolution/

Deaf Pundit on being culturally Deaf and the oral deaf viewpoint

http://faceme.wordpress.com/2009/04/30/is-there-a-hard-of-hearingdeaf-culture/

A thoughtful article why HOH is not a culture itself

Deaf Media War--Fighting fire with fire

Fri, 10 Apr 2009 09:31:33 GMT

AGBell has relentlessly sent out public information for years. One reason for this is that it shows their best face as benefactors to the deaf people and the publicity rakes in money in the form of donations, grants and endowments.

Another reason for this PR is that it promotes the livelihoods of its members, most of which are professionals working with deaf people. Medical people, surgeons, device manufacturers' representatives, audiology people, teachers, speech therapists and yes, fundraisers. When threatened by deaf consumer groups, it reacts vigorously, as seen in their denunciation letter which is more revealing than effective in its attempt to neutralize AFA. It's all about money, folks.

All of these professions are highly specialized and few in practitioners, so they have plenty of clout in a field with relatively little competition. These are lucrative professions, too, and the members are understandably going to protect their livelihoods earned on the backs of deaf people and their families. Here is a listing of salaries in the Washington DC area: (figures from www.salary.com)

audiologist...........$65,000 to 83,000 per year
ENT physician.....$65,000 to 83,000 per year
speech pathologist....$61,000 to 76,000 per year
pediatric surgeon......$301,000 to 434,000 per year
special education teacher.....$40,000 to 63,000 per year
biomedical sales representative....$55,000 to 72,000 per year
foundation director......$105,000 to 157,000 per year
fundraiser: $45,500 to $67,800

Now, there is nothing wrong with these high salary amounts. These people have spent a great deal on their education and invested a lot of work in their careers, and these figures are typical all over North America for professions in comparable fields. What is difficult to explain is that AGBell is both a charity and a professional trade union for the purpose of promoting their careers as well as giving services.

This link (AGBell financial report to IRS Form 990 for the year 2003) gives this information:

Total budget: $13 million dollars

of which $200,000 was spent for lobbying in government legislature
special projects for outreach: $1.5 million dollars
scholarships and grants to clients in financial need: total of $650,000
executive director's salary: $115,000
deputy executive director: $81,458
deputy executive director: $76,666
deputy executive director: $74,945
director: $60,000
controller $60,000

With this kind of money, and with the salaries of the average deaf professional ranging from $10 an hour ($20,800) to $45,000 per year, it is no wonder that the resources of the Deaf community are limited and our few professional affiliations limited to membership in larger hearing-controlled organizations.

How can we provide services to parents and lobby our legislators when AGBell is able to dispense with a lobbying budget of 200k per year back in 2003? How can we provide information outreach on a budget of zip and nada against people who are zealously protecting their livelihoods of deafness? There are progressive agencies like the Canadian Hearing Society, Gallaudet University and the National Technical Institute for the Deaf, and many others who have budgets of varying sizes for information services, but how much of that contains material helpful to parents and informative of the strengths of the Deaf community? I would bet that our real value is largely unknown.

What we do have are the resources of the Internet to wage a media war against misinformation, disinformation and slanted information that affects all of us, culturally Deaf, oral deaf, mainstreamed deaf, late deafened, and enhanced deaf (aid and implant wearers). The Internet is a nearly free and unlimited means to disseminate practical information and showcase our value as people. Such an undertaking would need the skills of professional public relations people so that disagreements and factional interests do not interfere with the effectiveness of the outreach. There are already many websites by individuals that could be networked into a great library staffed to find specific materials.

We could ask the employers of public relations people to contribute time to our cause. We could bring together media people to provide material and consult with them on how best to design it. We could form a bloggers' organization and determine ethical guidelines and goals for supporting this outreach. We could form an advisory group to monitor this process and identify problems as they occur. We could back up this media war with demonstrations in public areas such as Misha's idea for a million man march.

A media war to counter the propaganda of the past is the most effective and powerful means to combat audism. Audism in the community at large is based on wrong information. No matter how the wrong information got there (and AGBell was responsible for a lot of it), it can be corrected and that will ultimately benefit all of us.

An example of media war? This blog is one small piece. Media wars are effective combinations of fact, selected blocks of information with specific aims, personal histories chosen for impact and ease of understanding by the public, and appeals to the sensibilities of people. Similar to what AGBell has been doing all along.

Why go after AGBell? What is the difference between AFA and DBC?

Thu, 09 Apr 2009 01:39:07 GMT

Participating in the AFA protest was at once enlightening, troubling and thought-provoking.

Enlightening because I had questions about who the AFA leaders were, what its agenda was, and its future plans. Not all of these questions were answered, but I am satisfied that it is a separate organization from the DBC and directed by different leaders than are involved in the DBC. It is a New York-originated group. and its leaders appear to be a loosely knit group spearheaded by Ruthie Jordan. You might remember Ruthie as the firebrand who successfully organized the effort to remove the AGBell name and plaque from the NTID dormitory last year.

The DBC was founded by John Egbert of Minnesota and his team which at present include Barb DiGi of New York, Tami Hossler of Florida and the Deafhood lecturers Ella Lentz and David Eberwein of California.

DBC has gone on record as being supportive of AFA, and most of their team has appeared to support the AFA rally last Friday.

Thus the two are different groups, however similar their methods and targets may be. DBC focuses on the deaf young child and his parents, and AFA focuses on fighting audism in the general community. Both groups see the AGBell organization as responsible for much of the oppression by:

--suppression of sign language, discouraging parents from learning it, administering the AVT program which prohibits sign language for its duration, and promoting oral-aural therapies over programs that include ASL.
--bad faith relations with Deaf groups both historically and in recent times. AGBell has refused to communicate, or refused to meet in the past, and has refused to accept proposals or demands other than to agree to "refer them to another meeting" just to get the delegates out of the building. While the AFA was having its rally, AGBell issued a denunciation which essentially told the public that AFA does not matter in any way to them.
--audism in the form of underrepresentation of voting deaf members and board members; its funding is controlled mainly by hearing people and especially by professionals that derive their income from treating deaf people.
--its charter specifically targets hearing and speaking and does not include ASL at all. Its funding is earmarked strictly for programs promoting oral/aural therapies. Its outreach and network includes collaboration with hearing aid and cochlear implant manufacturers and providers; speech and hearing teachers, audiologists, otolaryngologists, ENT surgeons, and related professionals.
--its entire orientation is toward medical and rehabilitation approaches to deafness, and does not address the deaf person except as a client or patient. Its social outreach is designed to support the oral and auditory-trained deaf person.
--its overoptimistic and convincing public relations approach conveys an often misleading image of deaf people and creates unrealistic expectations in the public mind that make it more difficult for many deaf people to achieve their place in society.
--it targets ASL in the mass media and attempts to substitute an oral emphasis instead.
--its divisive teachings effectively weaken the deaf community. AGBell's fervent oral supporters have split deaf people from their families and divided them into groups that disparage each other.

On the good side, AGBell provides information and encouragement to parents who want their deaf child to learn speech and to use their residual hearing. Parents are very appreciative of this support and will protect their access to this help. This is important for the parent who deals with a sense of grief and loss in raising their deaf child, and who will still hold a medical mindset.

--However, AGBell as a benefactor actually blocks the appreciation of deaf people that we think is healthier and more conductive to a full experience of childrearing and childhood. Its strongly medical and audiological approach fosters false hope, unrealistic expectations, and fails to fully address the social, emotional and intellectual development of the child.

AGBell in its public outreach leads people to believe that deafness is curable, or can be minimized to the point of invisibility, or speech can be taught to the point of being indistinguishable from the general population. It leads the public to believe all deaf people can put on hearing aids or have cochlear implants and become functionally hearing, thanks to the heroic efforts of its membership. It leads the public to believe that all deaf people lipread. If "leading to believe" is too strong a way to describe it, allow me to say it gives that impression and does not do enough to counter it.

Note please: the historic suppression of ASL by AGBell is only part of the problem as AFA sees it. A fuller description of the problem is:

--upholding hearing standards of communication,

--conveying the desirability of being educated as a hearing person, and

--of merging into society without any manual communication, effectively minimizing any participation by the deaf person because of the effort it requires.

AGBell is certainly disagreeing with our rather unsympathetic take on its organization and activities, but itself is just as guilty of unreasonable views regarding deaf people who use ASL and especially of deaf people who rock their boat of assertions.

Personally, I think AFA and DBC are a positive step in the right direction by publicly challenging the established AGBell and its long-held notions, especially in its cherished motto: "independence through speaking and hearing" and even better, the "hear from the start, talk for a lifetime" motto. Such mottos are siren calls driving families to disaster. (More on that later.)

We should listen to modern parents such as Jodi del Dottore, Li-Li's mom and Miss Kat's mom, who tell us, "Focus on us, please! We aren't getting needed support from the Deaf community like we are getting from AGBell!"

We should also listen to the oral deaf people who feel offended by the AFA and DBC attacks on AGBell, feeling it to be an attack on themselves for choosing the oral/aural lifestyle and the difficult road of adopting hearing lifestyles as much as possible. They also suffer from audism and oppression. They are angry at us, accusing us of bashing them and of audism as well.

We should also listen to the people who say the rallies should be held in more public places and publicize more positive statements such as "We are Deaf and we are capable people!"

That said, we now need to seriously consider the next steps to take. As a loosely organized groundswell of d/Deaf people fighting audism, do we look beyond attacking AGBell? Do we fight for parent support made available from the Deaf community? Do we work harder at including the oral and the integrated deaf? Do we attack audism in the community next, and less at the AGBell headquarters?

Please see my next blog about an approach that AFA, DBC and other deaf activist organizations might consider: waging a media war.

Historic AFA Rally: Also a Bloggers' Meeting Place

Mon, 06 Apr 2009 01:08:31 GMT

(Above) The day started raining so heavily that the brave Rochester group arriving by overnight bus waded eight blocks, sloshing through rivers
and Georgetown mud to reach the AGBell headquarters. Around noon, the skies started to break up and we could see patches
of blue sky. The sun played peekaboo most of the early afternoon as you can see here: the left side shows shadows from the bright sun.

These very soaked twins are my daughter Melissa (hearing) and son Gavin (Deaf).
They were more eager than I was to come despite dismal weather predictions! At
their age I was a veteran of picket lines for pacifism but the years since had moderated
my activism quite a bit. In other words, I had grown chicken feathers.Their interest
surprised me and I enjoyed this venture with them so much it was worth getting wet
and my feet getting pounded to stubs.

There were perhaps a dozen children at the rally backed by their parents who wanted
a better future for them. I wondered what they were thinking and what my parents, God
rest them, would have done if they had to start over again these days. Back when I was
young, the Bell organization had convinced them so strongly that they resisted learning sign
to the very end of their lives.

(Below) Here you see the durable vinyl signs that AFA posted on every corner facing each direction of traffic. One can see this won't be the last rally by a long shot.

The center photo shows Gavin and the organizer of the New York bus, Dean DeRusso of the Rochester Center for Independent Living.

To talk about reparations seemed strong to me. It could be useful as an attention-getter to make people think, but it also risks AFA being dismissed as anxious to get on the same reparations bandwagon as the descendants of slaves. Melissa, on the other hand, told me that a great many cars were honking their support of AFA and waving to the poster holders as they stood on the street. It was a wonder the handmade posters didn't dissolve in the rain.

(Below, Right) Standing at the foot of the steps and looking up at the massive mausoleum that Alexander G. Bell built to house promotion of oralism, one gets the feeling that it still is a huge struggle. Here Judy Gough was kind enough to let me capture a vertical panorama using her as a reference. The three delegates that met with officials in the building would later describe a museum inside honoring hearing aids, efforts to teach speech, exhibits showing various devices including cochlear implants, and showcasing the history of the AGBell organization. This gave me chills that fit in with the weather. To be able to build up a positive regard for deaf people, d/Deaf organizations will have to tear away the revered idols representing desirability of hearing/speaking that were constructed over these hundred-some years.

Wearing a cochlear implant, this young lady hard at work on a poster made me think of the New Generation of d/Deaf people now coming to the front. They sign, they can hear some, they can talk to varying degrees, and some a bit better than my generation. Hopefully, this is true of a higher percentage than in mine.

Even so, our young people need a better world that accepts them
regardless of their hearing status. They deserve to be challenged on
their own merits and not be looked at doubtfully because they obtain
most of their information by other than hearing means.

No, there wasn't time to sneak over to the cherry blossoms that were beginning to look like this. (Perhaps on another occasion to visit this beautiful city where many of my friends working at Gallaudet live.) For now, it was an honor to meet many bloggers that first came to my attention through DeafRead. Who could forget meeting in person: John Egbert, Insane Misha, Ella Lentz, David Eberwein, Ruthie Jordan, Aidan Mack, Sharon Duchesneau, Jehanne, Robin Polin, Candace McCullough, Tami Hossler, Patti Durr, Pinky Aiello, Star Greiser, and many others whose faces I recognized but didn't get their names.

What fun to be in such distinguished company! Not only are Deaf people advocating for recognition as equals and for acceptance, itself a historic movement, but to be stamping the same sidewalk as the bloggers who are writing on their behalf getting their words out to the world at large, was itself a humbling experience.

This voyage gave me much food for thought. AFA, like DBC, is a controversial group and its aims could be subject to discussion for a long time. More commentary on that will come in future blogs, but this entry today aims to share the experience just in its worth.

Yes, Gavin and Melissa, we will make this trip again for more rallies. This will change your future.

Paula's Pearls: Still Opinion

Wed, 18 Feb 2009 09:17:01 GMT

Paula Rosenthal writes a valuable information blog, http://www.hearingexchange.com/blogs that is intended to give information to "people with hearing loss, parents and professionals". I enjoy some of the things in it; even though I might disagree with them based on my experience as a Deaf person, parent, and professional. Still, the following item touched a nerve:

"Misunderstanding #3: Sign language is the "natural" language of all adults and children with hearing loss. This is a myth that is perpetuated by proponents of deaf culture. While many deaf people learn and use sign language as their primary language, this is not true of all people with hearing loss. There are millions of people with varying degrees of hearing impairment which occurred at different stages of life. Also, not all people with hearing loss are visual learners." (http://www.hearingexchange.com/blogs/?p=204)

My feeling? Massively miffed. Sign language is a language like any other; it is as natural to its population as is French to the Gallic people and Hindi to the people of India. It is a comfortable and expressive language to those who have been visually dependent all their lives. To call its being natural "a myth perpetuated by proponents of deaf culture" betrays the prejudice of the writer. So sign language is unnatural?

To be accurate, this might have been more neutrally written as: Sign language is not universally used by all adults and children with hearing loss. There are millions of people with varying degrees of hearing impairment which occurred at different stages of life. It can be chosen as an adjunct to other means of communication and some do not choose to use it at all for various reasons. Some use it as a primary language or in combination with oral and aural methods.

Another inaccuracy stated by this writer is to say "not all people with hearing loss are visual learners." ALL sighted people in the world are visual learners, just as with other avenues of learning; the more functional senses will naturally become the main avenues of learning.

To state that some deaf children are not "visual learners" might as well be saying they are functionally blind as well as deaf. This is doing them a disservice.

ALL children are multisensory learners and the wise teacher or parent will make use of every available avenue, not make the tragic error of saying "he is not a visual learner, so let's make more use of his defective sense and make him an aural learner." Besides this being a logistical difficulty, I can't think of a better way to pave the way to hell with the best of intentions.

My personal bias is to give the deaf child all resources and to be wary of those who advocate any one method to the exclusion of others, and who convincingly offer unproven assertions supporting such exclusions. Paula, you provide a great resource, but please be sure that your readers know you are providing some of your pearls as personal opinion.

Sidekick Stolen, Got Pictures from the Thief

Sun, 11 Jan 2009 05:32:21 GMT

The last time I used my Sidekick II was on Tuesday at the Rochester airport, in an area where people wait for pickups until called by cell phone. My son had found my baggage, so he sent me a message and I drove around to get him and the bags. The Sidekick was then unplugged and placed in the console of my car.

It is not clear when it disappeared, but I missed it the next day and went looking for it, high and low. The car was checked out first, then every imaginable place at home, with the sinking feeling that it had taken its final walk. On Thursday, I checked my online account and unbelievingly, saw pictures of strangers instead of my favorite pics kept on the Sidekick. The dates were also messed up, ranging from December 25 of last year to 2004. At first I wondered why someone else's pictures were on my account, then it dawned on me they must have been taken by the person who gained possession of the device. As it was password protected, that person must have messed up the dates in defeating the block.

Anger overcame me. How dare this person take my Sidekick, and fail to return it as my name and email address were on it in red Dymo tape and on its black case? The pictures were varied: two were of a partially obscured woman with a baby in pink, one was of a teenaged boy, and four were of a man wearing a plaid shirt sleeping at a row of computers, the mousepads clearly marked with the name of a local business school.

The business school is located near the airport, which convinced me it was no mistake about the pictures getting into my account. The Sidekick had only enough battery power for a couple more hours, since it had been unplugged before fully charging. I called T-Mobile to suspend my account, and was told that the last transmission was near the time of my picking up the bags.

Now I pondered what to do. I printed out, in color, all the pictures, and researched the internet on what one does in this situation. A famous case described how one guy recovered his stolen device through posting of pictures. This was celebrated because it shamed a thief, but it caused its owner several months of aggravation and expense, not to mention threats. Do I go to the school and ask if they know who the people are? Do I report it and give the pictures to the local police? Or should I just forget it and buy a new device?

Pondering...my son lost his Sidekick and preferred to forget it and get a Blackberry. So this makes the second time we have lost a device in this family. Grr.