By Shane Feldman: Brian Joran is born to a loving family; however, over time his parents notice that their child is different. Brian’s parents take him to the doctor where their child’s condition is diagnosed. The doctor explains that Brian’s condition, if not immediately restored to normal, will lead him on a path towards a culture that is different from the one to which his parents are accustomed.
The news devastates his parents. They are aware of this “alien” culture from news and media reports about the existence of this community. Their fear drives them to rectify this problem in the form of surgery and subsequent therapy, which claims to restore those with the condition back to society. Brian’s parents do not hesitate to opt for the medical procedure and make the commitment to lifelong therapy even though it may sacrifice educational and social opportunities.
The surgery is a success and Brian becomes a changed person. Several media stories tout Brian’s successful restoration. Medial professionals throughout the world, touched by Brian’s story share the story with nervous parents who face the same situation. These parents too, fear losing their child to a strange culture. Brian’s story quashes the fear of the unknown and brings a beacon of hope to all families afflicted with the condition.
Now a poster child, Brian rails against the decision of the parents who did not opt for surgery. His first argument is that society does not have to endure yet another unnecessary deviation from the norm. The second argument is that it is not necessary to put families through the anguish of knowing that their child will not share their own culture. Brian’s third argument criticizes the tendency of those within the culture to socialize with others who share the same, untreated, condition. Finally, he makes the argument that parents should not have to learn a completely new culture and therefore the fear of not understanding their child’s new culture can be removed. Brian confidently proclaims that the culture will become obsolete in the future as technology improves.
Brian Joran is not deaf; he is gay.
I fear that this fictional short story may be misunderstood and misused, but it must be shared in hopes that some will understand. This story is not an attack on Cochlear Implants, but on the underlying fears. Cochlear Implants are not the culprit, but the scapegoat. This story is about the fundamental root of the problem, not the aboveground superficialities.I leave you with a quote that inspired this fictional story:
“What matters deafness of the ear, when the mind hears. The one true deafness, the incurable deafness, is that of the mind.”
- Victor Hugo to Ferdinand Berthier, November 25, 1845.
Shane Feldman is the husband of DeafDC.com blogger Julie Feldman, and the Marketing & Communications Coordinator at the National Association of the Deaf. This fictional story represents the personal view of the author only, and does not necessarily represent the views of any other individual or organization.
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27 Comments
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Don’t have time to fashion a careful post but don’t see the need to… you served it up perfectly. Cultural deviance seems most often to be only a judgment, nothing more, and it’s tragic when the jury are the parents.
Identity engineering (for lack of a catchphrase) goes back to Adam being made into His image. I’m neither religious nor a parent, but I can understand the want to see ourselves in our children and I can see defending (sometimes to the point of perpetuating) the indoctrination of our parents… who wants to admit they were raised wrong? It’d shake me to realize something as simple as “the sun is actually a watery mass”; it’d devastate me to realize my entire life has been wrong on a fundamental level.
Children of a Lesser God, a title we all know if not the play/movie, is a brutal presumption of a deaf person’s natural inferiority. Also finds application in the cases of parents refusing to accept children as they are, since that would be tantamount to admitting themselves to be lesser gods.
Personal observation: the thing about diverging from the culture of your parents is that it’s hard on the “pioneering” generation… and very, very easy for the subsequent generations. Being deaf of deaf, I’ve never had to deal with this. Don’t know how many out there are gay of gay (although that’s altogether different… you don’t attend a family reunion where everyone’s gay back to four generations), etc, but it’s when deviance loses its meaning.
I hope my kid likes basketball. If not, okay, fine. Bound to be common ground somewhere.
Glenn,
You wrote:
“Being deaf of deaf, I’ve never had to deal with this.”
Well, I’ve met deaf adults whose parents were deaf, and they, too, felt rejected. Even though deafness is obviously a “flawed” feature to have, there are still numerous ways for parents (of the deaf) to show their unconditional acceptance. This also applies to parents who implant their child at an early age. Like Shane said, CIs aren’t the culprit. So what if kids have CIs? It’s a good way for them to learn speech. But inside, they should feel accepted regardless of their outside “deviation”.
It’s all about attitude, really. When we play the deaf card, most of us say, “… in spite of my deafness, I succeeded….”. Very few would say: “Because of my deafness, I was able to do…”. You happen to come from a family who would use the latter in justifying themselves and their actions.
As a gay male that has NF2, I know that eventually I’ll be deaf. It’s weird to grow up knowing that you are (in ten years? 2 years? 6 months?) not going to have your hearing.
One of the concerns for my parents is that not only would I not be accepted by the hearing world — but also by the deaf community — for not having been born deaf.
And it’s this position of fence sitting that has me the most paralyzed about planning my course of actions over the 17 years since my diagnosis. Do I wait and hope gene therapy comes along? Do I have surgery to save another part of the brain but risk the hearing? Do I pretend that nothing is happening? Do I look into surgery, hearing aids, cochlear implants? No one has answers for NF2 patients, not the least doctors — it’s too different from patient to patient. There’s no way to control for data. But especially no one has answers for what to do about my hearing loss. And what I’ll find down the line.
Sometimes these decisions aren’t being made by parents. Sometimes decisions are made by adults. So, perhaps I am clinging to the world I know. And not rushing to world that I don’t. Is that wrong? I don’t have an answer. It’s certainly not as black and white as your post suggests, though.
What is NF2?
From the ever-loving well of knowledge, WIKIPEDIA.
NF2 is Neurofibromatosis Type II, a rare genetic condition (although I’m the first in my family to have it) where my central nervous system develops benign tumors in some of their cells. It’s marked, specifically, by bilateral acoustic neuromas which causes hearing lose and eventual deafness, either naturally or my surgery to remove the neuromas to protect the other parts of the brain.
DC1974, I am glad you shared your perspective. The issue certainly has gray areas such as yours. And it is that very gray area which might be an identity that many of us can relate to. There are extremists on both sides who may advocate for the purity of their methods towards a solution. But when one meets deaf and hard of hearing community members, it is a mass of people from diverse gray areas. For example, I recall my utter surprise when I learned about an ardent ASL hard-liner who became a passionate advocate of Cued Speech.
Your fear of rejection is understandable, and you may experience some of it. I have myself, from both sides, and it is plain wrong. Your fear is a part of the story I wrote, you are afraid of rejection, the same rejection that Brian is afraid of experiencing due to hearing people’s fears. So to avoid that rejection, he assimilates himself into the hearing world. No one should be made to feel that way, rejected because of fear. Such fear should not deter you from finding out what the community is really about, then making a decision on which way you want to go.
Yeah, it’s important to remember the Deaf nation has many tribes (god, I’m getting sick of my own quote.) We discourage diversity at our peril; only the most diverse of populations can really survive, because it would be the most adaptable. (From a biological perspective. I’m obsessed with Stephen Jay Gould.)
Question: do you think being Deaf has more to do with gender than culture? Gender can also be reassigned. Sexuality, of course, cannot, without significant psychological modifications amounting to torture. (And people with implants say they are still Deaf, although their body has changed. It’s not a bad analogy.) Nothing wrong with that - women also bond together, gay men also bond together. Lesbians also bond together, but usually into two-headed monsters, from what I’ve been told.
That is a fascinating analogy. So if you kipnap a man, force an irreversible procedure onto him which gives him physical features that make him a woman, he is still at heart, a man?
Yes.
They do that every day with intersex children - force them into one gender - and intersex adults complain just as loudly as we do.
Same thing with gay people who had to suffer under electrical therapy.
As to whether they would still be a man - it is worthwhile noting that many implant corporations caution parents that *their child will still be deaf.*
Advocates of the devil will argue that this analogy isn’t intact. They will argue that because hearing is sensorial, critical and so fundamental to the human condition, deaf people are biologically “hearing at heart.” They will also argue that we should embrace any humanistic, restorative attempt to the fundamental state of hearing - to a state of being where we can all fruitfully and independently enjoy what the world has to offer.
And because sexuality is innate and just as fundamental as being able to hear, it is a fundamentally diverse human characteristic that doesn’t require restoration.
In short, I think the questions become 1) Should deafness be accepted as being just as fundamental to the human condition as being hearing is - and just as fundamental to the human condition as being heterosexual, homosexual or bisexual all are? And 2) Should deaf people strive for the ability to hear?
Rob,
Currently, there’s many, many people (mostly fundamentalists) who would argue that there is a “right” sexuality which people should be able to be “fixed” to access.
Personally, my feeling is that our natural genetic diversity should be preserved. Diverse species stand better chances of survival. Specialized species go extinct quite quickly. And what would happen if one day evil monsters from the planet Zarquon came to Earth and killed all the hearing people with their Sonic Death Ray? We would somehow have to carry on.
I think Deaf people should strive for what they want to strive for. Some people think hearing is important. I frankly couldn’t care less about the vocalizings of some idiot bird. My focus is on film, writing, and the Sci-Fi channel (ok, im a geek.) Some Deaf people want to hear their babies cry (and then immediately try to get them to shut up. It sounds sadistic, doesn’t it?) I don’t see the problem.
Now, if your question is, “is the state of hearing the one in which individuals will have their best state of development…” well, I know plenty of hearing people who I consider morons. So being hearing isn’t necessarily a guarantee of developing high intelligence. And some people think that the process of striving and struggling might make people “better” (who said life should be easy?)
Just a devil, advocating.
I do not know how these 5 senses are originated, but I am certain these people, who came up with the 5 senses, have all 5 senses eventhough there were already people out there without one or more of those senses.
With that in mind, because those with all 5 senses are in the majority, imposition on other people lacking one of those is tolerated.
I never had a sense of smell besides hearing, I see it as no big deal. The unpleasant experience I have, of course, comes from being deaf as opposed to sense of smell in the society, which can easily go undetected.
I find it interesting to see the reaction of a few when learning I can’t smell, including some deaf people. It’s a look of pity and they asked ignorant questions. A common one is, “Can you taste?” I had to laugh because I do.
I had to smile when reading this part, “For example, I recall my utter surprise when I learned about an ardent ASL hard-liner who became a passionate advocate of Cued Speech.”
While I have nothing to fear, that was me Shane
was referring to. He is a native cuer along with several others I met in college. It is the research work of Melanie Metzger and Earl Fleetwood on cued languages that I am open minded about:
http://www.language-matters.com/difference.php3
These people have my utmost admiration, especially for their dedication and sensitivity to ASL as well as its cultural/linguistic population. I used to intern for Melanie in her department at Gallaudet.
I remember how shocking it is for some people to hear it coming from me. I was fortunate that ASL supporters never abandoned me over this belief. Just because I’m an ASL hard-liner and protect the Deaf/ASL community on every corner, it doesn’t mean I can’t be honest with what I have learned.
It surely brought back a lot of great memories
on RIT’s Deaf Perspectives notes conference :-)
Many debates come with passion, anger, tears, laughter and all other emotions there are.
Those days will be forever cherished.
I also cherish those Deaf_P memories +n.
I actually think rejection is natural. It might not feel good. You might try to minimize it, but everyone is rejected and everyone has to make decisions about who they will interact with. And choose to keep as company. So we end up making coping decisions. How do we deal with rejection? And for some of us, that might mean decisions to hang on to our hearing or the hearing world. For a gay person it might mean putting on the charade of being straight. As a gay person, I can completely understand why a parent of a child (if such a magic surgery were available) might explore a surgical treatment. It’s your job as parents to protect your children and make sure that they are comfortable. If you don’t feel you can do that if they are gay, I can see why you’d explore other options. I don’t think this is black and white. And I don’t think anyone is “wrong” in this situation. Part of being compassionate is understanding other people’s perspective. The decision about sexuality or cochlear implants might not be right for you: but it might make sense for someone else. And yes, it would be wonderful to live in a world where everyone is celebrated for their uniqueness, but human history tells us that that isn’t very likely. Nor, perhaps, is it always desirable.
There is something that does not make any sense to use labels. We are a carbon based breathing apparatus humanoid. Simple as that but why do we need a label such as homosexual, heterosexual, or whatever. It seems that we are geared ourselves with the reproductive organs labels. Creating labels is to divide the society and causing emotional also psychological issues. We are glued by acid (Deoxyribonucleic acid (DNA) is a nucleic acid) and Protein biosynthesis (Synthesis).
“carbon based breathing apparatus” sounds like a label to me. :)
but we’re also 70% water, too.
“Ugly bags of mostly water” - which Star Trek episodes did that quote come from? Who said that?
Microbrain. http://en.wikipedia.org/wiki/Home_Soil_(TNG_episode). Geeks we be.
It is human nature to want to fix things. With that said, it doesn’t really matter what kind of abnormality may it be the inability to play soccer (take the child to soccer camps, practices, and/or 1:1 coaching) to the inability to have a heterosexual relationship (seek counseling, take drugs, and/or date ppl of the opposite sex), there’ll be some fundamental issues to deal with that. Of course, not playing soccer won’t necessarily put a family into major clinical/pathological mode trying to diagnose the problem. But the point remains: when something is not right, there’ll be other ways to rectify the problem. A lousy soccer player could be a great pianist. A deaf child cannot be a hearing child. A gay child cannot be a straight child. What and where are the substitutes or alternatives? Technology. Medicine. Genetic engineering. Some parents will go at great lengths to find a way…
Now, to complicate this discussion even further, I’ve heard stories how some members of deaf of deaf underwent CI surgeries together almost simultaneously. I can’t imagine gay of gay wanting to do anything invasive to change its sexual orientation. Is this to say that the members of deaf community actually curb the secret desire to hear and still remain culturally deaf?
This WILL happen, when stem cell research reaches its maturity, a new ear canal can be regenerated. How is this going to impact the deaf families with young deaf children? Suddenly, a new substitute is available. A deaf child COULD be a hearing child. Hearing parents (or the “pioneering” generation) will choose that in a nanosecond.
Sexuality, on the other hand, is much harder to detect. I’m clueless if anything is in the development to permanently “heterosexualize” gay kiddies. It seems to me that gay culture is a lot bigger than deaf culture and even so, it’s heavily becoming part of the mainstream culture. Just think: Will and Grace. Queer Eye for the Straight Folk. Two states support civil unions/same sex marriages. Rehoboth Beach and Fire Island-major gay getaways. Number of alternative families is on the rise. Perhaps, the above fictional story is going to be a thing of the past. A substitute will no longer be needed: a gay child WILL be a gay child. No biggie.
Hmm…science, technology, and culture. Very sticky combination!
Here’s how deviant culture took the life of a deaf Russian legend!
———————-
June 13, 2006
MURDER OF MY DEAF HUSBAND IN MOSCOW
To: President and Members of the Executive Board of the International Olympic Committee
Subject: Murder of My Deaf Husband,
CISS/Deaflympics President Ammons and
$110,000.00 Assistance by IOC
Dear IOC President and Board Members:
On March 2, 2006, via the International Mail I sent to your IOC office in Lausanne my letter to President. Several weeks later on, through my friend, I again e-mailed a copy of my March 2 letter to your office.
To my big regret, I have never received any response from the IOC or its officials to these 2 letters at all.
Now, I must share with you a very appalling news: the police had finally found in a remote part of the city of Moscow a dead body of my husband - Felix Shlimovich.
Felix’s body was in a bad and awful shape - his face was a deformed one, one eye was missing and much more.
I write to you again to tell you that all this happened because of one person with whom the IOC continues to do business - Donalda Ammons, the CISS President.
I have plenty evidence to support my position, that is, because of Ammons, my husband was kidnapped and murdered by Ammons’ deaf Russian people in Moscow.
On my March 2 letter I explained to you that Felix sued Ammons and her Russian accomplice Slava Klimov for property theft.
Ammons twice - on March 17, 2004 and May 17, 2004 - evaded to appear at the court trial in Washington, D.C.
If there was ever held a live court trial, Ammons and her Russian accomplice would have lost the case because Felix had a very solid proof and number of credible witnesses to demonstrate the irrefutable evidence that the two - Ammons and Slava Klimov - did indeed commit an act of theft.
Because of the above and in order not to ruin their personal reputation, Ammons and her accomplice Slava Klimov were very afraid to face justice at the court of law.
So, the idea to eliminate Felix came up from Ammons and Slava - the two Gallaudet University-based employees in Washington, D.C.
That is, before next scheduled January 18, 2006 trial date - Slava, in order to protect his own and Ammons’ integrity and through his deaf father Nikolay Klimov - took a very desperate act.
Slava contacted and convinced his own father - Nikolay - to do something against Felix.
On December 11, 2005, Nikolay hired and financed deaf killers in Moscow to kidnap and murder Felix.
This way Felix was eliminated from his life’s existence on the night of December 11, 2005!
THE CLEAR FACT WAS THAT HAD AMMONS NEVER SOUGHT HELP FOR HER OWN SEPARATE LAWSUIT CASE PROBLEMS FROM HER YOUNG RUSSIAN FRIEND AND COLLABORATOR - SLAVA KLIMOV - IN THE FIRST PLACE, THEN NOTHING TERRIBLE WOULD HAVE HAPPENED TO FELIX.
I blame Ammons for getting involved both Klimovs - father and son - in her own initial legal problem in 2001 and, later on, for her involvement - directly or indirectly - in stealing of Felix’s property in 2002, then kidnapping and murder of Felix in 2005.
In spite of the horrible behavior by Ammons, recently I read through the http://www.deaflympics.com website that the IOC gave away its financial assistance of $110,000.00 to the CISS organization, which is still headed by Ammons.
Is it proper for the IOC to do business with an organization such as the CISS, whose president was implicated in kidnapping and murder of my husband?
Will it be appropriate for Ammons as a president of an international sports organization, who did not make any effort in thwarting the December 11, 2005 criminal act tragedy against Felix, to award medals to athletes at the medal podium of next week’s World Championships for the Deaf in Cycling in California, USA?
I would like very much to hear your answers to these 2 important questions from you, the IOC.
Will you please inform me if you will answer to these 2 questions or not?
Because of distance, lack of money and weak international judicial system ( there is no appropriate court of law to file a criminal charge lawsuit against Ammons-the troublemaker-initiator anywhere ), Felix’s grieving father, brother and I are very helpless to do anything by bringing the USA -based resident Ammons and her Russian killers together to justice for their horrendous acts of kidnapping and murder of Felix.
Lately, after Felix’s body was found out, I and my deaf friends-supporters in Moscow and New York have been receiving death threats from Ammons’ people because Ammons’ people want to silence us over the news of kidnapping, murder and body finding of my husband.
What can the IOC do for me and my friends-supporters in this regard?
Please provide your response.
With Tears in Eyes,
Irina Im Sen Shlimovich
that’s interesting that the topic on CI is not only found on this site but as well as on ridorlive.com I’m not trying to use this site to promote my own blog but I did post an article about CIs on I’m a 4th-generation deaf myself, ASL user yet I have a CI and my posting is largely a response to what was posted on ridor’s site and then came across this guest blog through a link from another deaf blogger’s site.
tried to enter with HTML about my blog but it disappeared anyway it’s http://www.theartfuleye.blogspot.com