News for hackers. Stuff that matters.
Re:Deaf girl is cured in world first gene therapy trial by foobarian on Thursday May 09, 2024 @12:10PM (#40309666)
This is a pretty insensitive title considering that the deaf community does not consider the lack of hearing a disease. "Deaf girl's hearing restored..." perhaps better.
Re:Deaf girl is cured in world first gene therapy trial by screye on Thursday May 09, 2024 @12:15PM (#40309743)
Science doesn't (and shouldn't) care for how people socialize around a disability.

I recognize the power and a reclaimed self worth that comes with reframing narratives around deafness.

The lack of hearing is a disease. Because diseases are nominatively about being at dis-ease. As long as it's difficult for deaf people to socialize with those who outside the community, it dis-eases them.

Re:Deaf girl is cured in world first gene therapy trial by anthony__j on Thursday May 09, 2024 @12:30PM (#40309898)
like someone mentioned in a separate comment, you are conflating disease with disability here. when people become too old to walk without assistance, you wouldn't say that they have a walking disease.
Re:Deaf girl is cured in world first gene therapy trial by TeMPOraL on Thursday May 09, 2024 @02:10PM (#40311082)
> when people become too old to walk without assistance, you wouldn't say that they have a walking disease.

Why not? We have some peculiar cultural memes related to accepting the inevitable end of life, which we perhaps should revisit. I see no reason to not consider aging itself as a slow-burn disease, one we'll hopefully cure at some point too.

Re:Deaf girl is cured in world first gene therapy trial by xhevahir on Thursday May 09, 2024 @04:32PM (#40312676)
"Peculiar cultural memes" is an odd way of describing a piece of advice that one encounters so frequently in cultures the world over.
Re:Deaf girl is cured in world first gene therapy trial by TeMPOraL on Thursday May 09, 2024 @05:59PM (#40313372)
Well, peculiar now, given the understanding of biology we gained over the last 70-ish years. Individually, it still makes sense, but at social level, it stops us from working on fixing the problem.
Re:Deaf girl is cured in world first gene therapy trial by Aurornis on Thursday May 09, 2024 @12:39PM (#40310023)
> like someone mentioned in a separate comment, you are conflating disease with disability here. when people become too old to walk without assistance, you wouldn't say that they have a walking disease.

This girl's disease was a genetic auditory neuropathy.

They cured her genetic auditory neuropathy.

Pedantic arguments about what it's called are missing the point. The person had a specific disease. It was cured.

Re:Deaf girl is cured in world first gene therapy trial by anthony__j on Thursday May 09, 2024 @12:51PM (#40310156)
to you, this is a pedantic argument. but to millions of Deaf people in the US alone, this is a very important political point. for example, lots of Deaf people who prefer to live without cochlear implants face lots of pressure from people who consider deafness to be a "disease" to be "cured", when in fact, they feel their most authentic way of living to be something different. in this way, language is significant
Re:Deaf girl is cured in world first gene therapy trial by macksd on Thursday May 09, 2024 @01:42PM (#40310733)
And people who do prefer to live with cochlear implants face pressure from the deaf community itself. You can't win. This was an achievement. A girl who probably saw this as a cure, saw success. Why can't we just be happy for her instead of detracting because others wouldn't make the same choice?
Re:Deaf girl is cured in world first gene therapy trial by wizzwizz4 on Thursday May 09, 2024 @03:01PM (#40311754)
18-month-olds don't usually have opinions on what does or doesn't count as a 'cure': that's a bit too abstract for most of them. Their parents can.
Re:Deaf girl is cured in world first gene therapy trial by s_dev on Friday May 10, 2024 @05:44AM (#40317016)
Yes but the arthritis or whatnot that causes the impairment is a disease.
Re:Deaf girl is cured in world first gene therapy trial by knicholes on Thursday May 09, 2024 @12:13PM (#40309703)
The deaf community considers the lack of hearing a disability when it means they get federal financial assistance, though, don't they? It can't go both ways.
Re:Deaf girl is cured in world first gene therapy trial by soperj on Thursday May 09, 2024 @12:15PM (#40309724)
a disability isn't a disease.
Re:Deaf girl is cured in world first gene therapy trial by s_dev on Thursday May 09, 2024 @12:16PM (#40309749)
If a disability means anything it means acknowledging you need 'help' in some form.
Re:Deaf girl is cured in world first gene therapy trial by eyelidlessness on Thursday May 09, 2024 @12:46PM (#40310105)
If a condition can be applied to the human experience writ large—needing help in some form—you might consider that “disease”, but you’d be deeply into the territory of existential philosophy and/or hyperbole.
Re:Deaf girl is cured in world first gene therapy trial by dotnet00 on Thursday May 09, 2024 @12:27PM (#40309867)
Her condition is a genetic disorder, which is a kind of disease. The deaf 'community' consists of many kinds of deafness, some are not diseases, others are. Some of those diseases cannot be cured, others are trivial to cure.

In the same way there are many different kinds of cough, some due to diseases, others not, some curable, others not, yet no one pretends it's offensive to talk about curing a cough. This weird excessive sensitivity to language accomplishes nothing.

Re:Deaf girl is cured in world first gene therapy trial by anthony__j on Thursday May 09, 2024 @01:10PM (#40310370)
im being a little extra in replying here, but only because i used to think like many people in this thread until i met more people living with deaf and blindness, and i realized that i had a big (pun unintended) blind spot in my cultural understanding about disability.

being deaf means that you live in a wholly separate world compared to a hearing person, and it changes the way you understand things- its a whole separate culture, as rich and complicated as any other. it does not compare to a cough, and many would find such a comparison very insensitive. for an example, i would check out the movie "The Sound of Metal"

Re:Deaf girl is cured in world first gene therapy trial by dotnet00 on Thursday May 09, 2024 @01:38PM (#40310693)
I was expecting this sort of comment, but everyone lives in their own world with their own culture and perspective, especially given the large immigrant populations in the West. Yet, the vast majority of people get by not being offended over phrasings that they could take as offensive to their cultural sensibilities if they really wanted to.

I remember being taught a similar thing as a child, about referring to people with disabilities as 'differently abled' instead of 'disabled', and similarly in my home country the government has made an effort to change the word for disability from one which means "improperly able" to "blessed" (poorly translating). But the former has not stuck, and the latter has not changed how poorly disabled people are treated there. Ultimately the changes turned out to be little more than feel-good virtue signaling.

In the same way, what does not using the word 'cure' accomplish in practice? Some word needs to be used in its place, which will take on the same meaning and in a few years people will be getting offended over that too (as any way of putting it will convey the reality that deafness is considered abnormal to the typical human experience). See the progression of terms that are seen as insults to one's mental faculties as a prominent example, even just within the last 20 years of online discourse that I've been around for, we've cycled through variations of retard (tard, reet etc) and are now in the process of doing the same thing with autistic (with the emergence of euphemisms like 'artistic') since the former is now deemed a slur.

Or, using a less provocative example, we don't change our language to be accommodating of religious communities who consider certain things to be insulting to their strongly held values or beliefs. We rightly point out that facts are more important than their feelings, regardless of how many hundreds or thousands of years old their culture and beliefs are.

Edit: If coughs are insensitive, we can instead look at tumors. There are many types in all parts of the body, some are so benign that they can be ignored, others are curable, others are cancerous and still curable, and yet others are so cancerous they are quickly terminal. Additionally, people afflicted with them tend to form a community due to shared experience. But would we stop talking about tumors colloquially as something which needs to be 'cured' because a portion of those in the community don't want to (or can't) get theirs cured?

Re:Deaf girl is cured in world first gene therapy trial by porterbeats on Thursday May 09, 2024 @12:28PM (#40309882)
I'm deaf in one ear and 70db loss in the other, just wanted to say nobody cares what you call it as long as you aren't an asshole about it. Being pediatric helps nobody
Re:Deaf girl is cured in world first gene therapy trial by pugworthy on Thursday May 09, 2024 @12:31PM (#40309910)
Did you mean pedantic (annoyingly corrective) or pediatric (child(ish))?
Re:Deaf girl is cured in world first gene therapy trial by jtbayly on Thursday May 09, 2024 @12:54PM (#40310196)
I laughed reading that as it worked so well as a typo.
Re:Deaf girl is cured in world first gene therapy trial by projektfu on Thursday May 09, 2024 @05:22PM (#40313101)
pedantically, pediatric means child (paithi) doctor (iatros) -ish... Apologies for the transliteration into latin letters.
Re:Deaf girl is cured in world first gene therapy trial by SliceOfWaifu on Thursday May 09, 2024 @12:30PM (#40309902)
You mean pedantic.
Re:Deaf girl is cured in world first gene therapy trial by kiwijamo on Friday May 10, 2024 @12:10AM (#40315451)
People care. Just because you (n=1) don't doesn't mean "nobody cares". It is always good to be openminded and understand other people's point of view.
Re:Deaf girl is cured in world first gene therapy trial by 7thpower on Thursday May 09, 2024 @12:30PM (#40309901)
What if ones being deaf is a symptom of a disease?
Re:Deaf girl is cured in world first gene therapy trial by anthony__j on Thursday May 09, 2024 @12:32PM (#40309920)
i thought this as well! you wouldn't say "autism cured". to many this must seem like a semantic argument, but Deafness is an entire culture and identity with hundreds of years of history
Re:Deaf girl is cured in world first gene therapy trial by vsuperpower2020 on Thursday May 09, 2024 @03:01PM (#40311746)
They can call it anything they want, but the moment they leave their "culture" and try to police our language they have to justify it on facts and not just assert that they feel a certain way. It's completely irrelevant to medicine if they have a culture or identity based around their disability.
Re:Deaf girl is cured in world first gene therapy trial by kiwijamo on Friday May 10, 2024 @12:14AM (#40315459)
Can you explain your reasoning behind putting culture in double quotes. You may do well to remember you also need to justify your use of your own words. The medical industry does not (and shouldn't) have the last word on language relating to disability. It would well be worth you reading into the medical model of disability vs the social model of disability. In short: medicine doesn't always work out in the best interest of people with disabilities, hence society becoming more aware and accommodating of people with disabilities actually supports people with disabilities more than medicine.
Re:Deaf girl is cured in world first gene therapy trial by vsuperpower2020 on Friday May 10, 2024 @02:33AM (#40315978)
I get what you're saying but I'm not going to legitimize a community based around the continued existence of a disability. As science advances, more will be cured and eventually everyone will move on and forgot about whether in the year 20XX people were offended by having deafness cured.
Re:Deaf girl is cured in world first gene therapy trial by kiwijamo on Friday May 10, 2024 @12:15AM (#40315462)
Sorry to see you've been downvoted. For those not familiar with the Deaf community, it is correct there is a Deaf culture with many people who identify as Deaf and indeed there is hundreds of years of history.
Re:Deaf girl is cured in world first gene therapy trial by Aurornis on Thursday May 09, 2024 @12:43PM (#40310069)
> the deaf community does not consider the lack of hearing a disease

The treatment addressed a specific disease: A genetic auditory neuropathy.

It's in the subheading which is the second line when you click the link.

You're really stretching to suggest that they are trying to imply that all "lack of hearing" is a disease when even the headline talks about gene therapy and the sub heading makes it clear that it was a specific genetic disease.

This is a case of unnecessarily bringing drama to a situation that doesn't even represent that drama.

Re:Deaf girl is cured in world first gene therapy trial by lioeters on Thursday May 09, 2024 @12:48PM (#40310123)
I used to live in Texas near the biggest deaf school in the U.S. From my understanding, some people in the deaf community do consider the word "cured" to be offensive because they don't consider their condition to be a disease.

I don't know if that's the dominant view and preference, but if that's the case, perhaps we should all learn to respect their culture, as much as we're all learning to respect (up to some point) people's self-identified identities, preferred pronouns, etc. It's a matter of education and cultural change so that more people are aware and respectful.

For those saying that science should not consider people's preferences, that's true but communicating about science definitely should. At least up to some point where they're not offending a large number of people.

(..Hmm, but should they really? What about religious people who are offended by the idea of evolution..)

Re:Deaf girl is cured in world first gene therapy trial by boxed on Thursday May 09, 2024 @03:41PM (#40312177)
The same people who say we should respect deaf culture or trans rights are the same people who got super offended at transracial people (https://en.wikipedia.org/wiki/Rachel_Dolezal).

I can't take this too seriously. Either you accept transracial, transsexual, and amputee wannabees, or you don't. I do. Activists generally it seems don't, or at least the ones screaming the loudest.

We can also all admit that something is a disorder and still accept those people for who they are. You don't have to go all crazy and try to ban homosexuality. And you don't have to go crazy and try to destroy Rachel Dolezal. We can be respectful.

Re:Deaf girl is cured in world first gene therapy trial by TeMPOraL on Thursday May 09, 2024 @02:15PM (#40311164)
Respect has degrees too. The issue gets thorny when, every now and then, a story pops up about some members of that community who want to deny their children interventions that would allow them to hear, or worse, want to intervene to take away their hearing, so they can fit in the same community as parents.
Re:Deaf girl is cured in world first gene therapy trial by southernplaces7 on Thursday May 09, 2024 @02:07PM (#40311057)
>I used to live in Texas near the biggest deaf school in the U.S. From my understanding, some people in the deaf community do consider the word "cured" to be offensive because they don't consider their condition to be a disease.

And if these some people want to view it that way to help themselves feel better or for whatever personal motives, that's their right. However, nobody else should be obligated to suspend a rational assessment of reality because of how it might offend anyone's emotional and irrational notion.

Whether it comes from a disease, and accident or something congenital, deafness is certainly at least a defect in normal human function and needs to be recognized as such by those who could strive to eliminate it as a problem.

Re:Deaf girl is cured in world first gene therapy trial by anthony__j on Thursday May 09, 2024 @12:58PM (#40310246)
this is great thinking. to me, the line to be drawn has a lot to do with lived experience. talking about deafness involved lots of people who live their entire lives affected by deafness, while discussing evolution affects peoples spiritual beliefs, which i see as largely a personal (if cultural) choice.
Re:Deaf girl is cured in world first gene therapy trial by lioeters on Thursday May 09, 2024 @01:28PM (#40310560)
I guess it's a touchy topic these days. Some believe we shouldn't cater to people's beliefs and choices (is identity a choice? up to a point..); and especially not cater to what people might find offensive. I understand their point, because there are people who are overly sensitive and are offended by many normal things.

The use of the word "cure" in this context is a perfectly logical choice of wording. Should we even consider whether some deaf people are offended by this word? It seems like the polite thing to do, but maybe it's a slippery slope that compromises the objectivity of science and clear communication of scientific findings.

Re:Deaf girl is cured in world first gene therapy trial by Chris2048 on Thursday May 09, 2024 @12:51PM (#40310155)
Did the title change, because can't disabilities also be "cured"?
Re:Deaf girl is cured in world first gene therapy trial by kwhitefoot on Thursday May 09, 2024 @12:58PM (#40310243)
The girl in question was not part of 'the deaf community', She's less than two years old, her community is her family.
Re:Deaf girl is cured in world first gene therapy trial by xhevahir on Thursday May 09, 2024 @04:34PM (#40312689)
I don't agree with this point of view, but people with hearing shouldn't be so quick to dismiss it. Deaf people raise it every time medicine makes an advance in restoring hearing.

Oliver Sacks has written interesting things on this subject btw.