dianrez's Xanga

A note of caution on stem cell treatment

Fri, 13 Nov 2009 07:10:02 GMT

This past week stem cells have hit blogs in a big way. One young woman went public, along with her physician parents, as having benefited from 50% in one ear to 100% in the other from several stem cell treatments in a Korean clinic.

At first it struck me as interesting in several ways: 1) stem cells being a natural treatment with one's own harvested cells, 2) the young woman was suffering late-onset deafness from an overactive immune system attacking her hearing cells, and 3) she had to go out of the country to obtain this expertise since it was not allowed to develop in the United States up to the present.

Troubling was: 1) the doctors involved have not been interviewed and the technology revealed; and 2) the lack of medical documentation on these first patients released to the public.

In the cyberdiscussions I went on record as saying I'd be interested only when it has gone through rigorous evaluation for safety and efficacy for a number of years. Such evaluation has limitations: it cannot know now what the effects would be after 5, 10 or 20 years. Would the cells have a high failure-to-grow rate? Would they turn malignant or grow where they weren't supposed to? What side effects could one get, such as disruption of the balance organs, tinnitus, or recruitment and other disorders of hearing?

That aside, yes, I'd be interested, even after being deaf all my life and having adapted (pretty well, I should say) to a life without hearing. I was also interested in the past by new gadgets on the market, eagerly adopting the TTY, the Telecaption device, the computer and the videophone as they appeared on the horizon. Even tried several makes of hearing aids as a youngster, each promoted heavily by its maker.

Cool that after stem cell treatment I might be able to hear the doorbell a floor below, a crying child in the next room, or a cat accidentally shut in a closet. If I learned to pick out my name called in a crowded room, even cooler. But I wouldn't expect, at my age, to be able to understand the TV or conversations with hearing people. Nor would I expect a stem cell miracle to change my life or affect my relationships with people in and out of the Deaf Community.

Then, tonight, I came across several entries in cyberspace talking about Don Margolis, Stem Cell webpages and invitations to fill out forms that would connect me to one of several stem cell clinics around the world. These webpages even had a long list of conditions that stem cells were to cure: from autism to diabetes to spinal cord injury to X-linked ataxia. Prominient is the engaging slogan: "Stem Cell Therapy can improve your Quality of Life when all else has failed!" My mind instantly flashed: HYPE.

Friends, it is my hope that we do not see misguided parents desperately seeking a cure, hard of hearing people scrambling for a better medical treatment, late-deafened people trying to regain their old life, or wanna-be-hearing deaf people rushing to moneymakers for something that is not ready nor proven safe at this time. In every medical advance, there will be people who suffer from the mistakes of pioneers and who therefore fail to benefit from later improvements. Let's not be hasty. Demand that there be proof, and more proof, that it is safe before throwing away your health. Demand that it is effective before investing your life's savings. Demand that it will meet your expectations before changing your goals and hopes for life.

It is human nature to see the grass greener on the other side of the fence. Also to see magic fixes for problems behind every door. After all, in my lifetime cancer went from an always-fatal disease to a manageable illness with new treatments. Babies born in a non-survivable condition now are living to grow up. But I have also seen oralism and hearing aids touted as the "advance that eliminates deafness" and the CI as "rendering sign language non-sustainable" turn out to be far from complete answers. We are today still years and generations away from where we wanted to be 25 years ago.

I've also seen an explosion in hucksters trying to prey on us. Instead of misguided, almost religious do-gooders crying the siren call of oralism, we now have sophisticated industry representatives hawking the promises of CI manufacturers...can one see the representatives of stem cell clinics coming? I am concerned that these entrepreneurs will blanket our already troubled community and mindlessly attempt to divert our careful chartings in education, personal adjustment and finding niches in life.

Will implantees have to wait for another time when stem cells grows new cochleas to replace the ones damaged by CIs? Will doctors happily refer all deaf babies to stem cell clinics without understanding its effects when the children become teenagers? Will educators ask to see certificates of stem cell treatment before signing up kids for school? Will insurance companies wait another 20 years before approving stem cell treatment?

The most reasonable thing to do now is to learn from the lessons of the past and build upon them before one even considers the advances in the near future. Time-tested wisdom is the bedrock of building lives and a platform for the future. And hang on to your money.

On DeafRead losing Bloggers

Tue, 22 Sep 2009 02:43:10 GMT

Losing Contributors: There Goes the Neighborhood!

Of late more bloggers and vloggers have been announcing their leaving DeafRead. Some cited the influx of CI and oral blogs, others blamed the occasional mean-spirited respondent that "ruined the atmosphere" at DeafRead.com. Mostly, the latter reason referenced DeafVideo.tv.

This is sad, because when good v/bloggers leave, the neighborhood changes character. With some of what's left, I find myself clicking off in the middle of blogs or vlogs in annoyance and vowing to buy a timer so I can better control my derrière-numbing hours in front of the flat screen.

Alternative Deaf-centered Aggregator?

Don G. recently posted that he is jumping ship and mentioned a coming new aggregator that would be devoted to ASL Deaf issues. If memory serves me right, a similar idea was proposed at DeafRead last year: DeafSide. This clipping from Tayler's website describes it: (Tayler, April 2008)

"Tayler and Jared are announcing a new site that aggregates deaf blogs much in the same way DeafRead does. But there are differences. The blogs will focus on sign languages and Deaf culture. Instead of moderating posts, all posts will be published from selected blogs."

That made me think back to when I met Tayler, one of the founders of DeafRead. The first time was at a forum where he was a speaker and I asked a question: when would Deafread establish DeafSide to concentrate on more cultural Deaf topics? He showed excitement in elaborating on the idea and it seemed that it would be developed soon.

Since then,, DeafVideo.TV demanded a lot of time and support, but a different type of vlogger started showing up: the clubroom bullshitters and gossipy chatterboxes. These people expounded on a variety of topics, usually wasting several minutes in greetings and everyday trivia before getting to the topic. Additionally, meanies would show up to skewer respondents or provoke flaming discussions. Little that was cultural, really, except for some colorful language being thrown back and forth. It became immensely popular so I suppose DeafSide never got the development it deserved.

To be fair, there were serious vloggers that contributed also. Issues were discussed in earnest and valuable points made, alas sometimes to be trashed by backbiters. Personality contests took over in many otherwise great vlogs. I felt this to be a lost effort, because many excellent issues never made it to the Hearing community to be appreciated; as they stayed in our little language community without captions.

The second occasion of meeting Tayler was at an informal breakfast a year later. Tayler told us how DeafRead began as a cross-country collaboration with Jared Evans. It was a remarkable accomplishment despite physical distance and deafness, which was happily obliterated by their use of modern communications via the Internet. The topic turned to how it could be ruined by people using it to tear down other people.

Tayler's normally optimistic personality turned pessimistic. "I was saddened by the mean comments on the question panel." He meant the rolling screen that ran alongside the webcast of presenters during the last Deaf Bloggers Symposium in California. A few used it not to post questions, but to vent, criticize and gossip about the presenters. His disappointment was profoundly evident, affecting everyone else at the table. The others tried to commiserate, sympathetically agreeing that "some could be that way". What could one say? Here was a New Age young Deaf man, discussing his life's creative accomplishments and appalled at how an unthinking few could trash it. The guidelines that were put in place were difficult to enforce, because people differed on their applications.

Tayler's Principles and Today's Realities

Part of the problem is Tayler's vision for a generalist, no-discrimination d/Deaf aggregator with few rules to keep up the positive quality of entries. This allowed in cochlear implant blogs over the past year. One early CI blog was booted off due to an undisclosed commercial connection to the industry. The controversy that caused and the controversy over allowing more CI blogs, their topics about mapping, surgery, experiences in hearing, and oral/aural discussions soon led to other topics about Deaf-on-deaf discrimination, discussions on allowing oral/aural topics, and HOH-centered blogs. As if that wasn't complicated enough, the sometimes unclear guidelines booted off enough d/Deaf contributors to cause resentment and questions about impartiality.

That caused many to feel that DeafRead had become overwhelmed by HOH and Hearing concerns. In Tayler's vision, he saw Deafread as bringing together diverse people into a community. I saw some of this happening already: some parents came forward to support Deaf Culture and express their appreciation of Deaf writers. Other parents exposed discrimination against their kids because they wore CIs. Many HOH and oral deaf shared about being rejected in the Deaf community. We needed to see that. Deaf responders answered to give them support. Some Deaf writers foresaw an atmosphere where everybody is accepted, no matter their language or living choices. Others jumped on them as being too oral in thinking or too Deaf-culturist. A few wrote to blame the historic AGBell for causing this division. The results were indeed mixed.

In the view of this blogger, Tayler's vision might be difficult to achieve--not because people are so diverse, but because of lack of time for reading all these wildly diverse opinions. It also seemed that blogs sparked more blogs of a similar nature...oralist blogs breeding more oralist blogs, not settling at all well with those who had sensitivity from past abuse. So...the pendulum began to swing toward more oral/aural/CI/Hearing concerns. Some might say "just hide those bloggers." That is no answer when individual bloggers write on a variety of topics.

Tayler, if you are reading this, I hope you'll consider either swinging the pendulum back to a Deaf Culture orientation or starting DeafSide in earnest. Or perhaps splitting DeafRead into two areas--one for the medical model and hearing technologies, and one for the Deaf-centric topics.

Diversity and Specialization

The internet and the magazine stands offer great diversity. You will see magazines specializing in tastes aimed at specific reader groups. There are magazines devoted to home handymen, novice computer users, working mothers, photographers, sewing and quilters, travel in the Northeastern United States, dog shows, weightlifters, and even sailboaters. Go to the bigger magazine displays in bookstores and you will see even narrower specialties such as Photoshop, gun collecting, computer modding and pregnancy. The number of generalist magazines (consider the many that have died over the years) are the same in both stores: just half a dozen.

Don G's announcement of a new cultural blog aggregator might be a response to the widening generalization of DeafRead. Another blog, DeafVillage originated from the booting off of the first CI blog and now offers another "generalist" aggregator with a much greater emphasis on CI blogs. It advertises itself as an anything-accepted, "safe" blogsite. To read it, however, one gets a feeling it is more of a parent-centered, medically oriented aggregator--in truth, a specialized one.

It is time for specialization to come on stage. Deaf Culture is a widely accepted concept that people are still trying to describe, define in different ways and has many different expressions, so it is worthy of an entire aggregator in itself. Whether Don G's aggregator or DeafSide comes on board, or both, it will be an admirable addition to cyberspace and an illuminating resource for parents. In each, I hope there will be an editorial board to screen blogs for the best the Deaf community has to offer. In their editorial policies, individual bloggers could also be advised to screen their respondents to keep it that way.

One criticism in the past was that such a concept is discriminatory. Exclusivist. Maybe even elitist. This is missing the point, because a cultural showcase such as this is intended for expression of a little-seen aspect of humanity, not as an exclusion...there are many generalist and diverging places on the internet and magazine stand for all the others. DeafRead's general aggregator could have tabs for linking to the other websites and not be threatened at all by their competition. How about it, Tayler?

Parallels between Deaf Society and Dwarf Society

Thu, 13 Aug 2009 11:13:16 GMT

We aren't alone or unique as a people.

It was only in the late 70's that we firmly announced that we were a cultural group, that is, a society of deaf people equal to any other in the world. Before that we organized clubs and civic associations, sports teams and churches and fought for legal rights, but never before did we come out and ASK for recognition as a cultural entity. We were inspired by Black organizations and the fight for civil rights, and demanded the right to self-determination which reached a crisis point during the Gallaudet protest of 1988. Between that and the second Gallaudet protest of 2006 there was a growing development of what is Deaf Culture, by defining ASL, its artistic and literary pursuits, and the inception of sign language studies and cultural programs. Now we are reaching a stage where we are questioning the validity of many concepts and coming up with new theoretical ones.

Now that we are coming of age as a cultural group, it would be interesting to study other groups for additional insights.

Picture: Little People, Big World (DVD, uncaptioned, Amazon.com)

One parallel group are people born with dwarfism. Like Deaf people, most dwarfs, who prefer to be called Little People have a society. Like Deaf people, most (80%) are born to average people. There are over a hundred types of dwarfism, the most common one being achondroplasia, the condition found in 80% of all Little People (LP's). Most LP's dislike the terms midget, munchkin and lilliputian in the same intensity we dislike the terms deaf and dumb, deaf-mute, and hearing-impaired. Like Deaf people who self-identify as deaf, Deaf, hard-of-hearing, oral or ASL, Little People also may self-identify by the type of dwarfism they have: such as: achondroplasia, diastrophia, or primordial.

Parents of dwarf babies find themselves in the distressing position of knowing nothing about the future of their LP child. Like parents of deaf babies, they go on searches for information and might contact the Little People of America, an advocacy organization similar to the NAD. (Not all LP's are members of the 5,000-member LPA, though.) The LPA is composed of people of all occupations: teachers, artists, lawyers, doctors, accountants, welders, plumbers, engineers and actors. They also represent every nationality, ethnic group, religion and sexual orientation. Many have secondary disabilities, usually skeletal, as part of the dwarfism complex. They share a common feeling of self-acceptance, pride, community and culture, like Deaf people do in their social groups. Just take a look at the LPA website and the homepage of the photographer Gary Parker. The heartwarming pictures are captivating!

Like Deaf children, LP children find challenges in schooling and in meeting other children. Those with secondary disabilities may be home-schooled or schooled in special environments that also serve other physically disabled children, but most attend mainstream schools and compete with average children.

Little People frequently marry other LP's and become parents, and those with achondroplasia may have a 2 in 4 chance of having a child with dwarfism, and a 1 in 4 chance of having an AP (average height person) child. They adapt their homes (as Deaf people do with lights) by installing lowered countertops, accessible cabinets and latches, and extra steps wherever handy. As Deaf people add mirrors to their cars, so do LPs add lifts to seats and extenders on the pedals of their cars.

Like Deaf parents who welcome Deaf children in their families, Little People also welcome children born with dwarfism as new members of a society they know well. For them and for us, our differences are to be celebrated, not to be distressed over, and we do not feel disabled except by the attitudes of the larger society. Like Deaf people who unwillingly face the medical model and prefer a cultural viewpoint on themselves, so do Dwarf people who would rather be seen as a social group than be regarded as having medical problems.

LP's have their own World Games which this year were held in Belfast, Ireland during the last half of July. They also have conventions on a state, international and national basis, the most recent being a national conference last month in New York City.

Like Deaf people who battle audism, LP's fight heightism, an attitude in average people favoring those who are tall over those who are short. A 2004 study found that each additional inch of height translated to an average increase in salary of $789 per year. Like Deaf people, Little People realize that more height, like more hearing, brings higher incomes. Little People feel this is unfair and it is unfair, comparable to race and gender differences in salary.

Like parents who opt for cochlear implants, parents of LPs may consider height-increasing surgery for their dwarf children. Similar to many Deaf people in the case of cochlear implants, the LPs consider limb-lengthening surgery as unwise, dangerous and questionable in benefit.

This surgery involves breaking of the long bones of the arms and legs and slowly pulling them apart, a millimeter a day, in specially constructed frames screwed into the bone, adding up to two inches. Medical involvement may be giving powerful human growth hormones to force preteen childrens' growth during a period of five years, but may result in only 1 to 1.5 inches additional height plus the possibility of serious future health problems as a result.

LPs regard this as "profiting from prejudice". By bowing to the height expectations of society, the pharmaceutical industry, and the surgical profession, otherwise healthy LP children have their well-being put at risk by well-meaning parents. Even if most LP children are made taller, there will always be those who do not respond, and will still bear effects of the heightism prejudice that the treatment unwittingly promotes. In a future when most Deaf children receive cochlear implants, there always will be those that are not candidates or who receive no benefit too. These will be the ones who receive the brunt of a worsened form of audism.

The stress of being short throughout life is regarded as less severe than the emotional and physical stress of meeting pointless expectations of the average height population. "What we need to do instead is to educate those who discriminate against short people, not engage in the genetic or medical engineering of little people." is often said by LP advocates.

Deaf people protesting the implications of cochlear implant surgery are saying the same thing. What we need to do instead is to educate those who discriminate against deaf people, not engage in the genetic or medical engineering of deaf people to satisfy the expectations of hearing society.

Bury "Deafless" thinking!

Wed, 29 Jul 2009 02:11:26 GMT

Often I find Barry Sewell's comments interesting, if not always agreeing with them. His recent vlog promoting a new concept he invented, "Deafless", makes sense up to a point.

His idea was: elderly people who participate in athletic contests are called "ageless", writings that are still interesting despite being old are called "timeless", so a person who considers himself a human being is "deafless" despite being deaf. He wasn't promoting DENIAL of being deaf, just putting it at the bottom of the order of importance.

Come again? Can one put any part of ourselves last in importance? What if my being female was last, or my being an American, or being a literate person, or my being a mother, professional, a Quaker, or a creative person? Or even Deaf? Which would you put at the top, and which at the bottom? One can't. Like a multi-faceted diamond, however you turn it, it retains its beauty and fire by bouncing light around its myriad surfaces until it becomes reflected into your eyes.

Barry isn't currently accepting any responses on his blogsite, but his YouTube site has some comments. A point that needs to be made was: one can no more ignore the Deaf part of oneself any more than one can ignore the other parts that make up ourselves. We are like gems, with many facets, each facet equally important in reflecting who we are. Taking away a single facet makes us lose clarity and brilliance in displaying our inner composition.

If Barry is listening, he will realize that the many Deaf bloggers are criticizing his vlog on this basis: one can no more take the Deaf identity out of us than one can take anything else out. To put it last is to put our struggle, our courage to adapt, our inventiveness and our will to succeed in spite of the limitations placed on us by others dead last in importance. This is surprising, because Barry as a person is no stranger to this. He, along with his being deaf, is a successful businessman and leader in his own right. He has a deaf family, uses ASL and knows well the fight that we wage on a daily basis. I am baffled by his statement that he is a "human being" first and "deaf" last. If one is to promote the characteristic of being Deaf as a positive and character-building quality in ourselves, we must not pretend it is unimportant and try to hide it behind the drawer where the old hearing aids are kept. To be human is to own every part of ourselves.

Do you know this sign?

Wed, 22 Jul 2009 16:05:20 GMT

Portrait of English young girl making a questionable sign:

This early 1800's painting was found while I was researching the internet for Deaf culture tidbits. (Yes, I know what this sign looks like!) I became curious about its artist, and found the following information:

William T. Annis, an English mezzotint engraver, of whom very little is known. He exhibited landscapes at the Royal Academy between 1798 and 1811, and engraved portraits such as one of Mary Wollstonecraft Godwin (later Shelley, author of the classic story Frankenstein and a noted intellectual in her times.)

Nothing could be found about the portrait of the young girl demonstrating a sign nor of what the sign means. The title is (link)

The Dumb Alphabet, a Girl Demonstrates the Art of Communicating with the Deaf and Dumb, so one could suppose this is an old form of the fingerspelled English "D". Perhaps the artist did take some license in interpreting the handshape.

Or did the girl posing for the artist have a mischievous streak?

English readers that know BSL, please pitch in your interpretation of what this young girl is actually saying, but keep in mind the antiquity of this painting.

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