The Deaf Protest Stem Cells to Treat Post Birth Deafness

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The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by S.L.Acker » 2012-01-20 10:13pm

I'm not sure where the best source article for the actual research paper is so I leave that up to people that know better, but this is what my google-fu came up with.
Story About the Research
FDA Approves Phase I Stem Cells for Babies with Hearing Loss
There's a new FDA approved cord blood stem cell safety study to be done on deaf children age 6 weeks to 18 months who acquired sensorineural hearing loss (nonsyndromic deafness). This is a year long study.
Children’s Memorial Hermann Hospital and Cord Blood Registry® (CBR) are launching the first FDA-approved, Phase I safety study on the use of cord blood stem cells to treat children with sensorineural hearing loss.
The study, which will use patients’ stem cells from their own stored umbilical cord blood, is the first-of-its-kind, and has the potential to restore hearing. This follows evidence from published laboratory studies that cord blood helps repair damaged organs in the inner ear.
The year-long study will follow 10 children, ages 6 weeks to 18 months, who have sustained post-birth hearing loss. Children who are deaf as a result of a genetic anomaly or syndrome are not eligible. To ensure consistency in cord blood stem cell processing, storage, and release for infusion, CBR is the only stem cell bank providing clients for the study.
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Researchers will obtain and process the patients’ stored cord blood for treatment. The cells then will be given to the patients via IV infusion, and patients will be observed for several hours in the hospital.
Patients will return to the hospital to repeat all tests except the MRI at one month and one year, and all tests with an MRI at six months.
“This study is exciting because it might offer a non-surgical option for some children with profound loss,” Linda Baumgartner said. “More importantly, this is the first treatment with the potential to restore normal hearing.”
The new Phase 1 study already began in April 2011 and will end April 2015 although the collection on final study results will end in April 2014. This study will use stem cells from cord blood saved at a cord bank after a baby is born. Stem cells from the deaf baby's cord blood will be done via IV transfusion back into the child. Parents whose deaf children qualify for the trial study will decide whether to try the new procedure or not.

Since this news came out it didn't take long for an outcry in the form of a petition for culturally deaf people and others to decry the IV transfusion stem cell study as:
....inhumane and unethical and condemn this hospital, corporation, other collaborators and the FDA for treating our Deaf infants in this experiment as their guinea pigs.
The original petitioner went so far as to claim such procedure as dangerous and that it carries "long lasting risks" but never elaborated on exactly what those "long lasting risks" are. However, there is a similar but previous safety study using cord blood stem cells on children with cerebral palsy age 1 to 12 years old that began in January 2010. Final data collection on outcome ends in February 2012 which is next month. Ironically, there appears to be no objection from any particular protest group for this IV transfusion safety study for babies and older on reversing their cerebral palsy condition.
The MCG team follows on the heels of a pilot study at Duke University which is exploring if cord blood can be readily applied to infant’s with palsy like symptoms in the first two weeks after birth. Both teams are looking to verify the anecdotal evidence that cord stem cells can be used to ‘cure’ CP children. If successful, the work at MCG and Duke University may provide parents with hope that storing a child’s cord blood could be an effective shield against cerebral palsy.
Cord blood IV transfusions have been done in children and adults.
To be safe, most cord blood transplants done so far have been in children and smaller adults. Researchers are now looking for ways to use cord blood for transplants in larger adults.
This first ever FDA approved study on hearing restoration (sensorineural hearing loss) for deaf children describes the study:
Acquired sensorineural hearing loss is characterized by a loss of functioning hair cells in the Organ of Corti, with greater hair cell loss correlating with more severe hearing impairment. Children with sensorineural hearing loss experience difficulty developing normal language which usually leads to poor academic and social development. Currently, there are no reparative therapeutic options available, and treatments are designed to augment the diminished function of the injured Organ of Corti.


Pre-clinical data suggest progenitor cell infusions may enhance intrinsic repair mechanisms in the Organ of Corti which may restore hair cells. This treatment could ultimately lead to hearing improvement. Human umbilical cord blood (hUCB) is an available, autologous, stored progenitor cell population available for potential therapeutic use. The primary objective of this study is to determine the safety of autologous hUCB infusion in children with acquired hearing loss. The secondary objective is to determine if functional, physiologic and anatomic outcomes are improved following hUCB treatment in this patient population.
This may turn out to be a promising result since it says that pre-clinical data suggest that such a procedure may restore hair cells thus lead to hearing improvement. This is obviously a much more natural process, if proved successful, involving the baby's own stem cells from the baby's umbilical cord (cord blood) could ultimately turn out to be much better option than cochlear implants. In fact, if successful would shorten the prediction time scale to seveal years on a reversing sensorineural hearing loss instead of a few decades away. Over a year and half a ago in my blog I commented that in 2004 a prediction was made that an application for hearing loss rather than a cure could be at least twenty years away (or by 2024) by Dr. Rubel. In another article in 2004 Dr. Rivolta said a cure could be possible in 10 to 15 years away (by 2014 to 2019). In 2009 in the Department of Otolaryngology University of Miami Ear Institute's newsletter quoted believing they could be 10 years away (or 2019) from a cure at the earliest possible timeline. But most scientists seem to concur that a cure or a very applicable treatment on reversing hearing loss would be seen within their (the scientists') lifetime...and that's not very far off folks.
Here is the link and text of the petition to stop this research.
STOP STEM CELLS EXPERIMENT ON THE DEAF BABIES
STOP STEM CELLS EXPERIMENT ON THE DEAF BABIES

We, the People of the United States of America, strongly condemn the FDA's decision to allow Cord Blood Registry® and the Children's Memorial Hermann Hospital to conduct stem cell experimentation on Deaf newborns and infants (6 weeks old to 18 months old). We strongly consider this experiment to be inhumane and unethical and condemn this hospital, corporation, other collaborators and the FDA for treating our Deaf infants in this experiment as their guinea pigs.

----------------------------
We, the undersigned, call upon President Obama, US Senate and House of Representatives to STOP this stem cell experimentation on Deaf newborns and infants, an FDA project in conjunction with Children's Memorial Hermann Hospital and collaborators who only stand to reap millions to wipe out the Deaf community!

The FDA has recently approved stem cell experimentation on Deaf infants at the Children's Memorial Hermann Hospital in Houston, Texas. The experiment is to include up to 10 Deaf newborns and infants (6 weeks to 18 months old) to eradicate their being Deaf. The FDA's approval promotes the hidden cultural and linguistic genocide on the Deaf infants and is part of the eugenics to wipe out the Deaf community and our beautiful and precious American Sign Language, which is used by the ASL Deaf community and is one of the top languages studied in the USA.

The Deaf infants are human beings and have their human rights to be created, accepted, loved and supported. The FDA approved experiment will include repeated MRI screenings, possible sedation, injection of untested stem cells for that age population - all which carry long lasting risks and implications. All of this will be done in the name of CURING the infants of a "condition" of which is an ethnicity. (See Lane, Pillard, and Hedeberg)

Being Deaf is not a life-threatening condition and does not cause premature death nor does it bring immeasurable suffering. In fact it does the opposite. Many Deaf people who have American Sign Language and English as part of their life attest to being happy. If the collaborators of the study want a cure - the FDA, the Blood Cord Registry, and the Children's Memorial Hermann Hospital need look no further than ensuring that the infant has access to ASL, English, and Deaf culture. Audism (the belief that to be hearing and/or behave as a hearing person is superior to being Deaf) is the problem, not being Deaf. It is similar to the attitudes that affect minorities like Hispanic people, African-American people, like that of the "Stepford Wives" syndrome -- creating the perfect white, blonde-haired, blue-eyed, hearing baby.

It is imperative that the collaborators of this study (which all stands to have monetary gains from this experiment) be held accountable and that the funding and future profits behind this unethical and inhumane study be fully disclosed and examined.


We, the People of the United States of America, strongly condemn the FDA's decision to allow Cord Blood Registry® and the Children's Memorial Hermann Hospital to conduct stem cell experimentation on Deaf newborns and infants (6 weeks old to 18 months old). We strongly consider this experiment to be inhumane and unethical and condemn this hospital, corporation, other collaborators and the FDA for treating our Deaf infants in this experiment as their guinea pigs.
I personally think this is as bad as the antivaccine bullshit. Just because you're deaf and bitter don't stop other parents from helping their kids.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Executor32 » 2012-01-20 10:57pm

Deafness is an ethnicity now, who knew? I suppose hearing aids are tantamount to gas chambers, then. :roll:
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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by S.L.Acker » 2012-01-20 10:58pm

The way they talk about cochlear implants you might think so...

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Terralthra » 2012-01-21 02:23am

It may not be an ethnicity, but it is a community with a common language and culture, and that deserves some respect. This protest in particular is on more solid ground than cochlear implants, in my view, since this really is human experimentation on infants.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by S.L.Acker » 2012-01-21 02:30am

Terralthra wrote:It may not be an ethnicity, but it is a community with a common language and culture, and that deserves some respect. This protest in particular is on more solid ground than cochlear implants, in my view, since this really is human experimentation on infants.
The ground work has been laid and it's not like this is some underground basement treatment with massive risks. I really don't see these stem cells having some massively negative effect, worst case is that your kid got stuck with a needle a few extra times and had some extra checkups. Best case we can ensure that a subset of infants has a good chance to having hearing when they otherwise might not. I'm not seeing the downside.

Deaf people talk about feeling music and how they pay deeper attention to things like it's some blessing to be deaf. It's not, you're missing a sense that the rest of the world takes for granted. You'll have issues communicating with people that aren't used to the deaf, and there are a nontrivial subset of jobs you simply cannot do.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Simon_Jester » 2012-01-21 02:37am

There's a subset of deaf people who really want to define "deaf culture" as something distinct- there's no equivalent for "blind culture" as far as I know, but it's very real with the deaf. It's very far from universal; I suspect if you polled people with no hearing you'd find most of them in favor of finding a way to stop children from being born deaf.

It's just that obnoxious minority who view it as a unique cultural thing that they want to perpetuate, and don't see it as a binary "you can have this capability, or not have it, and one choice is preferable to the other" thing.
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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Terralthra » 2012-01-21 02:40am

Well, a large proportion of the minority are those who lived through fairly horrible treatment for Deaf people. Having their hands tied behind their back so they'd "learn to talk," despite having no realistic possibility of that was the least of the treatment visited upon them.

Remember that it was in living memory that the method that the US government favored for stopping children from being born Deaf was sterilizing Deaf adults against their will.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by S.L.Acker » 2012-01-21 02:43am

Terralthra wrote:Well, a large proportion of the minority are those who lived through fairly horrible treatment for Deaf people. Having their hands tied behind their back so they'd "learn to talk," despite having no realistic possibility of that was the least of the treatment visited upon them.

Remember that it was in living memory that the method that the US government favored for stopping children from being born Deaf was sterilizing Deaf adults against their will.
I understand that there has been some nasty shit done to deaf people, but it's just spiteful to want children to grow up deaf and become one of them. It would be like people born without the use of their legs forming a culture around being able to out benchpress people in their weight class, or the blind creating a culture around music that other people don't really get. It's stupid and just gives people extra reason to look at you funny.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Simon_Jester » 2012-01-21 05:01am

Terralthra, why are you capitalizing deaf? It's an adjective, not a proper noun. Like capitalizing black and white ("The Black people...") it suggests that you're using the word to connote something a little different from everyone else.

And I agree with S.L.Acker- attempting to give a person the ability to hear is not the same as trying to abort them in the womb or sterilize them, and it comes across as tremendously spiteful and stupid when 'deaf culture' hardliners try to prevent children from getting the ability to hear and speak.
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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Terralthra » 2012-01-21 05:11am

Lower-case deaf refers specifically to those with near-total or total hearing loss. Capital-D Deaf refers to people who are members of the Deaf community (especially in the US). Especially people descended from those who attended residential schools, whose native language is ASL, and whose primary sociocultural background is within that community.

It is possible to be hearing and Deaf (for example, my fiancée, while hearing, was a child of Deaf adults (CODA), and her first language is ASL), and it is also possible to be deaf but not Deaf (usually used to describe people who deliberately turn their back on said culture, or were removed/kept from it by family or government pressure).

This is an extremely common distinction made by anyone with even the slightest understanding of Deaf culture. Note that the letter of protest uses capital-D Deaf.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Atlan » 2012-01-21 05:25am

So, what do these people want, a congressional hearing? Oh, wait, it's called a HEARing, I guess that discriminates against deaf people too.

It's a disability, people. That is usually not something to strive for in your children.
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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Terralthra » 2012-01-21 05:32am

I've never once heard a Deaf person make any kind of comment about language use like that, even in jest. Why would they, given that they have their own language, you idiot?

The point is not that they want their children to be deaf. My fiancée's parents didn't puncture her eardrums so she'd be deaf too, so the idea that they "strive" for deaf children is monumentally flawed. The issue is that there is a culture and community built around the language they've developed. Treatments for deafness which target infants remove children from that community before they're even aware it exists. If this were any other language community, I doubt there'd be a person here arguing that infants should be removed from a family who speaks an extreme minority language (Walloon, e.g.) and taught English instead because it'll be better for them in the long run.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Simon_Jester » 2012-01-21 07:18am

Other language communities don't exist because of an inability to do something. Walloon is very obviously not worse or better than English. It's just different. There's no special ability that English-speakers have that Walloon-speakers don't. An English-speaker who learns Walloon and joins Walloon culture has lost nothing.

But hearing is just such an ability. When a person who can hear loses their hearing, they invariably feel that they are worse off for it. The only people who seem to place no value on this sense are the ones who don't possess it and would seem to want to make sure their children don't, either.

By depriving a child of the ability to hear, you are depriving them of choice- they don't get to decide whether they value being a Deaf-ian more than they value, say, being able to listen to music. You might not value that ability, if you personally don't have it. But does that mean you get a right to decide for a person not yet born whether they will be forced to not have that ability? Do you get to decide to force them to become a Deaf-ian, by ensuring that they will never have the organs their body would need to be anything else?



Imagine parents with a hereditary genetic disorder that causes blindness. Would you really be comfortable with those parents saying that it was morally wrong to treat their children so that their children would gain the ability to see? Would it not strike you as strange if those blind parents started using analogies to eugenics or the Nazis or the Stolen Generations when someone tried to give their children working eyeballs?

Would you feel the same way about parents who had a hereditary condition that led them (and their children) to have no arms? To have a life expectancy of twenty years?

Where's the limit?
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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Lord of the Abyss » 2012-01-21 07:24am

Terralthra wrote:I've never once heard a Deaf person make any kind of comment about language use like that, even in jest. Why would they, given that they have their own language, you idiot?

The point is not that they want their children to be deaf. My fiancée's parents didn't puncture her eardrums so she'd be deaf too, so the idea that they "strive" for deaf children is monumentally flawed.
Some do just that. Wanting Babies Like Themselves, Some Parents Choose Genetic Defects
Yet Susannah A. Baruch and colleagues at the Genetics and Public Policy Center at Johns Hopkins University recently surveyed 190 American P.G.D. clinics, and found that 3 percent reported having intentionally used P.G.D. “to select an embryo for the presence of a disability.”

In other words, some parents had the painful and expensive fertility procedure for the express purpose of having children with a defective gene. It turns out that some mothers and fathers don’t view certain genetic conditions as disabilities but as a way to enter into a rich, shared culture.

It’s tempting to see this practice as an alarming trend; for example, the online magazine Slate called it “the deliberate crippling of children.”

But a desire for children with genetic defects isn’t new. In 2002, for example, The Washington Post Magazine profiled Candace A. McCullough and Sharon M. Duchesneau, a lesbian and deaf couple from Maryland who both attended Gallaudet University and set out to have a deaf child by intentionally soliciting a deaf sperm donor.

“A hearing baby would be a blessing,” Ms. Duchesneau was quoted as saying. “A deaf baby would be a special blessing.”

Born five years ago on Thanksgiving Day, the couple’s son, Gauvin, was mostly deaf, and his parents chose to withhold any hearing aids.
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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Broomstick » 2012-01-21 09:01am

S.L.Acker wrote:The ground work has been laid and it's not like this is some underground basement treatment with massive risks. I really don't see these stem cells having some massively negative effect, worst case is that your kid got stuck with a needle a few extra times and had some extra checkups.
Incorrect. Back when I worked with medical researchers we became aware of a trial involving stem cells in an attempt to treat/cure Parkinson's. The lucky ones had no improvement. The unlucky ones had side effects from increased symptoms (leading in at least one case to suicide) to brain tumors from stem cells that decide to not simply settle in but, apparently, start a major construction project.

That was nearly 15 years ago now. I'd like to think they have some idea what went wrong and how to prevent it.

The odds of something really horrific happening are, in fact, quite low and I can only assume these infants will be very closely monitored (hence the comments about MRI's and so forth) so if something bad does start to occur they can do something about it. The risks, however, are not zero.

That said, I can not agree with Deaf people who are anti-implant and anti curing deafness. They are cut off from part of human experience. I would not agree with forcing adult Deaf people to undergo treatment. It would be fine if we could delay some of these decisions until deaf/Deaf children are adult but the way the brain developments won't allow for that. If deaf children are going to truly learn to process hearing and speech there is a specific window during which they have to be exposed to sound, it occurs prior to puberty, and if it's missed the brain can not learn to utilize the sense of hearing very well, certainly not well enough to process speech. (Vision also has a similar window – people blinded in childhood but whose vision is restored in adulthood remain functionally blind because their brain can't fully process the input). So these treatments must be done on children too young to give consent in order to be fully effective.

And these treatments do have risks. First, they don't always work. People with cochlear implants are at higher risk of meningitis than average. There are all the possible complications of surgery. Stem cell treatments are truly still experimental at this point.

While I do not agree with the stance, I can see Deaf parents who feel they have good lives and function well without needing hearing, in a community of their own, might not want to subject their children to surgery they feel is unnecessary for a full life, or risk the complications such surgery may bring. And sure, on top of that, there are issues involving past abuse of deaf people, being cut off from hearing children, and so on.

I think there is also misunderstanding on the part of hearing people. Cochlear implants don't cure deafness any more than eyeglasses cure myopia. They are a prosthesis, and far from perfect. I think too many hearing people think you just slap in an implant and voila! no more hearing problems! They don't work for everyone, and they still have definite limitations. Not to mention the expense, the maintenance... I have to wonder if some Deaf parents fear that their child is going to be “stranded” between Deaf and hearing, rejected by Deaf people who see they wear an implant yet not enabled to be fully a member of the hearing community due to imperfections in implant technology.

Sure, stem cell treatment might be even better than implants. I also suspect it won't work for everyone. (I used to work for a deaf woman. Cochlear implants and stem cells to regrow cochlear hair cells would not work for her because she was deaf from brain damage, not from damage to her ears or hearing mechanism).

Much hype and fear on both sides.
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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Terralthra » 2012-01-21 01:45pm

Simon_Jester wrote:Other language communities don't exist because of an inability to do something. Walloon is very obviously not worse or better than English. It's just different. There's no special ability that English-speakers have that Walloon-speakers don't. An English-speaker who learns Walloon and joins Walloon culture has lost nothing.

But hearing is just such an ability. When a person who can hear loses their hearing, they invariably feel that they are worse off for it. The only people who seem to place no value on this sense are the ones who don't possess it and would seem to want to make sure their children don't, either.

By depriving a child of the ability to hear, you are depriving them of choice- they don't get to decide whether they value being a Deaf-ian more than they value, say, being able to listen to music. You might not value that ability, if you personally don't have it. But does that mean you get a right to decide for a person not yet born whether they will be forced to not have that ability? Do you get to decide to force them to become a Deaf-ian, by ensuring that they will never have the organs their body would need to be anything else?

Imagine parents with a hereditary genetic disorder that causes blindness. Would you really be comfortable with those parents saying that it was morally wrong to treat their children so that their children would gain the ability to see? Would it not strike you as strange if those blind parents started using analogies to eugenics or the Nazis or the Stolen Generations when someone tried to give their children working eyeballs?

Would you feel the same way about parents who had a hereditary condition that led them (and their children) to have no arms? To have a life expectancy of twenty years?

Where's the limit?
Only 5% of deaf children are born to deaf parents, so calling it a hereditary disorder isn't right either. Most deaf children are born to hearing parents, who will do literally anything to get rid of the deafness, even at significant risks to their child's health. They do not understand that even though it is a sensory deficit, life goes on. This approach of "do whatever you have to, just so long as my baby doesn't grow up deaf!" is what Deaf people are truly protesting.

Also, the vast majority of Deaf people weren't born deaf, either. Many lose their hearing to disease or trauma, and these are the same people who don't see themselves as having a major disability. You shouldn't make huge sweeping claims about how Deaf people think or feel without knowing. Would they rather have their hearing back? Maybe. Sometimes. But they wouldn't risk their lives for it.

Also, it's just "Deaf." No one says "a Deaf-ian," and I just explained to you the distinction between deaf/Deaf, so for you to invent new words to describe this distinction is either pretty ridiculously patronizing or incredibly stupid on your part.
Lord of the Abyss wrote:Some do just that. snipped article
This is new information to me, but even so, the article admits it's a fairly rare occurrence.
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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Grandmaster Jogurt » 2012-01-21 02:48pm

Terralthra wrote:The issue is that there is a culture and community built around the language they've developed. Treatments for deafness which target infants remove children from that community before they're even aware it exists. If this were any other language community, I doubt there'd be a person here arguing that infants should be removed from a family who speaks an extreme minority language (Walloon, e.g.) and taught English instead because it'll be better for them in the long run.
I'm not trying to be combative with this question but rather trying to see if I'm missing something. You mentioned that your fiancée is Deaf while still being able to hear. If a Deaf family's child is made able to hear during infancy, how does that remove them from the Deaf culture any more than had they been conceived able to hear?

I understand the fears of children being harmed through the policy of curing deafness at any cost, but I think I'm missing something with the concern listed above.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Terralthra » 2012-01-21 06:16pm

Grandmaster Jogurt wrote:
Terralthra wrote:The issue is that there is a culture and community built around the language they've developed. Treatments for deafness which target infants remove children from that community before they're even aware it exists. If this were any other language community, I doubt there'd be a person here arguing that infants should be removed from a family who speaks an extreme minority language (Walloon, e.g.) and taught English instead because it'll be better for them in the long run.
I'm not trying to be combative with this question but rather trying to see if I'm missing something. You mentioned that your fiancée is Deaf while still being able to hear. If a Deaf family's child is made able to hear during infancy, how does that remove them from the Deaf culture any more than had they been conceived able to hear?

I understand the fears of children being harmed through the policy of curing deafness at any cost, but I think I'm missing something with the concern listed above.
As I explain above, the vast majority of deaf children are not born to Deaf parents. Only 5% of dead children are born to Deaf parents (as an example, my fiancée's parents are both Deaf, and they divorced after she was born and remarried, also to Deaf persons. Between her parents and her parents' new spouses, they have a total of 8 children - all hearing and Deaf).

This leaves 95% of born-deaf or deafened-in-infancy children in homes with parents who may have no idea about Deaf culture or ASL; no idea that the possibility exists to have a rich life without hearing. To these parents, having a deaf child is an unparalleled disaster, and many are willing to take any measure at all to have a chance at reversing the hearing damage, even those not justified by the loss in practical terms.

These are the concerns of the Deaf community: not that their own children will be removed from their culture, but that the children of hearing parents will be kept out of the Deaf community by force and ignorance, even if the cures are partial at best (in other words, even if ASL would still be a useful language for them).

The bias in the article is revealing: "Children with sensorineural hearing loss experience difficulty developing normal language which usually leads to poor academic and social development." This is demonstrably untrue, and referring to heard/spoken language as "normal" is typical of the attitudes some healthcare providers demonstrate, and the ignorance they have about linguistic development and non-spoken language use.

This also really only applies to children who are born deaf or go deaf prelingually, and as stated, these are a minority of cases. Most hearing loss and deafness occurs postlingually, as a result of environmental damage or head trauma; diseases like Meniere's, meningitis, and mumps; and other medical conditions like multiple sclerosis or strokes.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Molyneux » 2012-01-21 06:44pm

This may be seen as unfeeling, but the concept of "culturally deaf" just seems...for lack of a better word, silly. Frivolous. At best, as medicine marches on, it seems like something that will be transient.

ASL, as a language, I have no problem with - my sister learned it, my brother knows a little, and I'm envious of their understanding of a language in which I have no grounding.

But deafness as a cultural marker? As others have said, that seems akin to trying to argue for someone being "culturally blind", or "culturally diabetic", or "culturally legless". Deaf individuals are worthy of every measure of respect as human beings, but they are human beings who lack one of the primary senses by which humans interact with the world. I certainly hope that a day will come when there are no deaf people anywhere in the human population - just as I hope the same for blindness, nerve disorders, and skin diseases.
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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Knife » 2012-01-21 09:25pm

Also, it's just "Deaf." No one says "a Deaf-ian," and I just explained to you the distinction between deaf/Deaf, so for you to invent new words to describe this distinction is either pretty ridiculously patronizing or incredibly stupid on your part.
In a thread about Deaf/deaf culture; I find this statement hilarious. A Deaf (captial D) is a new invented word. I realize you have an emotional stake in this, but at least acknowledge it.
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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Terralthra » 2012-01-21 09:55pm

Knife wrote:
Also, it's just "Deaf." No one says "a Deaf-ian," and I just explained to you the distinction between deaf/Deaf, so for you to invent new words to describe this distinction is either pretty ridiculously patronizing or incredibly stupid on your part.
In a thread about Deaf/deaf culture; I find this statement hilarious. A Deaf (captial D) is a new invented word. I realize you have an emotional stake in this, but at least acknowledge it.
Of course I have an emotional stake in this, but don't you see that after having explained to them what the appropriate word is, using some other word made up on the spot is insulting?

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by S.L.Acker » 2012-01-21 10:02pm

Terralthra wrote:
Knife wrote:
Also, it's just "Deaf." No one says "a Deaf-ian," and I just explained to you the distinction between deaf/Deaf, so for you to invent new words to describe this distinction is either pretty ridiculously patronizing or incredibly stupid on your part.
In a thread about Deaf/deaf culture; I find this statement hilarious. A Deaf (captial D) is a new invented word. I realize you have an emotional stake in this, but at least acknowledge it.
Of course I have an emotional stake in this, but don't you see that after having explained to them what the appropriate word is, using some other word made up on the spot is insulting?
The Deaf capitalize the D to purposefully exclude others from their culture. It is not one of inclusion, the are the Deaf, if you weren't raised by those that are also Deaf or become deaf later in life you can't join their super secret club. This isn't some super power, or something to be proud of, you're lacking a sense. If I refuse to sign and cover my mouth a hearing person might find my actions odd, the deaf are fucked when it comes to understanding me at all. If they can't see it coming then they're at a disadvantage, there are reasons why the deaf aren't candidates for military service.

So if we choose to mock the Deaf for being stupidly stubborn and burning political will in an area where they just make themselves look like morons, we will. If we choose to mock them for trying to form a club around the lack of a sense that most people have, we will.

There are real things that deaf people should be trying to get people to be aware of, they ought to focus on that and actually get something done.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Stark » 2012-01-21 10:08pm

Terralthra wrote:It may not be an ethnicity, but it is a community with a common language and culture, and that deserves some respect. This protest in particular is on more solid ground than cochlear implants, in my view, since this really is human experimentation on infants.
Being deserving of respect (just for existing, apparently) is irrelevant. Its like saying greaser culture is worthy of respect, and thus any attempt to change the way hair gel is made is an attack on that culture - unethical greaser guinea pigs, even.

Culture is something that changes; deaf culture emerged from deaf people. Why declare this current state an endpoint and shrink-wrap it? Why not take what's valuable and roll with it? Aside from 'because I like it', I mean.

The very idea that I should not treat my child to prevent a disability out of respect for someone else's culture that I neither know or care about is absurd.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by Terralthra » 2012-01-21 10:11pm

S.L.Acker wrote:The Deaf capitalize the D to purposefully exclude others from their culture.
Factually inaccurate. They capitalize the D to emphasize that there is a culture at all.
S.L.Acker wrote:It is not one of inclusion, the are the Deaf, if you weren't raised by those that are also Deaf or become deaf later in life you can't join their super secret club.
Factually inaccurate.
S.L.Acker wrote:This isn't some super power, or something to be proud of, you're lacking a sense.
Strawman.
S.L.Acker wrote:If I refuse to sign and cover my mouth a hearing person might find my actions odd, the deaf are fucked when it comes to understanding me at all.
Irrelevant.
S.L.Acker wrote:So if we choose to mock the Deaf for being stupidly stubborn and burning political will in an area where they just make themselves look like morons, we will. If we choose to mock them for trying to form a club around the lack of a sense that most people have, we will.
Pointless rancor.
S.L.Acker wrote:There are real things that deaf people should be trying to get people to be aware of, they ought to focus on that and actually get something done.
I'm sure the Deaf community welcomes your suggestions, steeped in excoriation and ignorance as they are.

Let's sum up: factual inaccuracies, strawmen, bile, and condescending "I know better than they do what they should be doing, despite not actually knowing much about what they might be doing." Have you considered running for the GOP Presidential Nomination? You'd fit right in.

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Re: The Deaf Protest Stem Cells to Treat Post Birth Deafness

Post by S.L.Acker » 2012-01-21 10:22pm

Terralthra wrote:
S.L.Acker wrote:The Deaf capitalize the D to purposefully exclude others from their culture.
Factually inaccurate. They capitalize the D to emphasize that there is a culture at all.
S.L.Acker wrote:It is not one of inclusion, the are the Deaf, if you weren't raised by those that are also Deaf or become deaf later in life you can't join their super secret club.
Factually inaccurate.
The fact that there is a difference between the deaf and he Deaf says you're a lying sack of shit. Just because you're deaf doesn't make you Deaf, thus they obviously do exclude people. They also don't seem to make very many public attempts to include 'hearies' or 'audists' as they label people with hearing into their culture.
Terralthra wrote:
S.L.Acker wrote:This isn't some super power, or something to be proud of, you're lacking a sense.
Strawman.
The Deaf clearly see their impairment as something special given the way they fight anything that would make less and less people deaf. They have opposed CI's on pretty shaky ground when they should have worked for better implementation. Now their own petition shows just how off they are about this stem cell treatment. Unless there is some Deaf group of even more hardline Deaf people doing this...
Terralthra wrote:
S.L.Acker wrote:If I refuse to sign and cover my mouth a hearing person might find my actions odd, the deaf are fucked when it comes to understanding me at all.
Irrelevant.
Again hardly, the Deaf seem like they would rather people born deaf stay that way because to cure them would destroy Deaf culture. Fuck Deaf culture, they're demonstrably disabled compared to normal people and their taking stances to ensure that others suffer as they do.
Terralthra wrote:
S.L.Acker wrote:There are real things that deaf people should be trying to get people to be aware of, they ought to focus on that and actually get something done.
I'm sure the Deaf community welcomes your suggestions, steeped in excoriation and ignorance as they are.

Let's sum up: factual inaccuracies, strawmen, bile, and condescending "I know better than they do what they should be doing, despite not actually knowing much about what they might be doing." Have you considered running for the GOP Presidential Nomination? You'd fit right in.
How many people have come into this thread supporting your side again? Oh wait, nobody. How many people think the stance the Deaf are taking is stupid? Everybody else.

The Deaf are clearly doing a great job with the PR at this stage.

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