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.
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 referencedDeafVideo.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?
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,andhearing-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 itis 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.
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 senseup 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 thebottom 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.
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)
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.
