Yuval Harari makes an interesting point in one of his books: that many kinds of these inventions always start as a way to treat people with some kind of a medical condition and bring them into the "median" spectrum, but there's no stopping there and the same inventions are then used to bring "median" people into the "super-human" spectrum. What happens next is that the "regular" humans have to compete with these "sup…
Deaf girl is cured in world first gene therapy trial
61–70 of 351 posts
Re: Deaf girl is cured in world first gene therapy trial
#62I’m optimistic that at some point, I’ll be able to get a treatment to take care of my red green color blindness. I’m well aware that it’s very much a first world problem, and rightfully should be very low on the totem pole of medical issues to cure. But goddamnit, I want to see red.
Re: Deaf girl is cured in world first gene therapy trial
#63Earlier quoted context omitted.
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 ex…
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 sepa…
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
#64Earlier quoted context omitted.
> 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.
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
#65Earlier quoted context omitted.
I don't really know enough of the medical details - I thought people with color blindness lacked the proper receptors in their eyes, so it's not like in the article where a connection is restored; you'd have to grow new infrastructure in the eye which seems a bit more complicated. Nevertheless, would be very cool if possible - I know lots of men with color blindness.
In color blindness, the cone cells produce an incorrect opsin protein that isn't sensitive to red (or is sensitive to a frequency close to green). Gene therapy would fix that, though it'd probably take a while for the brain to understand the new information. The main reason this therapy isn't available is because the FDA has decided that the risks of gene therapy aren't worth the benefit of curing color blindness. I…
Re: Deaf girl is cured in world first gene therapy trial
#66Earlier quoted context omitted.
Have you tried color blindness glasses (e.g. EnChroma)? I am not familiar with them but some reaction videos were pretty heartwarming.
Those videos are fake the glasses don't do very much. https://www.youtube.com/watch?v=RY-NF_7R-pk&t=559
Re: Deaf girl is cured in world first gene therapy trial
#67Earlier quoted context omitted.
In color blindness, the cone cells produce an incorrect opsin protein that isn't sensitive to red (or is sensitive to a frequency close to green). Gene therapy would fix that, though it'd probably take a while for the brain to understand the new information. The main reason this therapy isn't available is because the FDA has decided that the risks of gene therapy aren't worth the benefit of curing color blindness. I…
The 'though it'd probably take a while for the brain to understand the new information' is an interesting question; on one hand people say you need to fix stuff early in development while the brain is still very plastic (so great for this kid); but then again there is that demo of people getting used to vertically flipped vision with weird glasses; so perhaps something is flexible?
Re: Deaf girl is cured in world first gene therapy trial
#68Yuval Harari makes an interesting point in one of his books: that many kinds of these inventions always start as a way to treat people with some kind of a medical condition and bring them into the "median" spectrum, but there's no stopping there and the same inventions are then used to bring "median" people into the "super-human" spectrum. What happens next is that the "regular" humans have to compete with these "sup…
You say that as if this has happened before ("many kinds of these inventions always start as..."), but what conditions have actually had this happen? I can't think of anything that started as something to help bring people up to a median level, to then end up bringing median people into a super-human level. Everything we've done so far have all been ultimately limited by the human body, so things that bring people up…
Re: Deaf girl is cured in world first gene therapy trial
#69Well, here we finally are.
Our ancestors, and I mean great-grandparents and grandparents, would call us gods.
Re: Deaf girl is cured in world first gene therapy trial
#70What always interests me with stories of people hearing or seeing for the first time in their life, what is it like to gain a new sense? One would think that growing up with a sense is integral to its processing (and filtering) and the sudden introduction of a sense later in life would come with all sorts of side effects.