this post was submitted on 10 May 2024
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Agreed. I was flippant after reading the headline, since I don't like Musk, but once I read the story I was like "oh yeah this tech does have big potential for the differently abled. "
A quadriplegic being able to control a cursor on a screen with the implant for 100 days seems like a legit first attempt.
Could be great for the accessibility movement in the long run. But I could be naive or too optimistic.
Why, when we already have non-surgical solutions that allow the same thing but don’t come with the risk of killing you?
Please dude I promise you this is near universally hated by disabled people 😭
I agree with not liking 'differently-abled' as a term. To me it reads along the same lines as 'disabled people are built different'. Pretty awkward.
Not that I have a horse in this race. Or a neuralink, as the case may be.
Yeah I feel like it’s an attempt to resolve the Deaf stance that deafness isn’t a disability. The general stance of the Deaf community is closer to that of the queer community than that of say the paraplegic community. It sees deafness as a disability constructed by a society unwilling to communicate visually and to teach signed languages to all people able to use them.
Mind you we’re the contentious portion of the disabled world. The Deaf are as bad as lesbians I tell ya.
But on point, “differently abled” feels like it washes away the struggle. I am disabled. I’m disabled by a society that taught my great grandparents, my grandparents, and my parents not to teach their hard of hearing children sign language because otherwise we won’t use English. I’m disabled by a society that doesn’t include visual signals in emergency sounds even when it’s easy to do. I’m disabled by a society where people, including cops, will speak to the back of my head and not even consider that I didn’t respond because I didn’t hear. And I’m disabled by the assumption my life has to be worse for having less sound as though I’m not extremely literate and completely capable of using a signed language. I’m not “differently abled” I’m completely able in most ways everyone else is, and people who can’t learn to communicate visually are just as disabled as people who can’t learn to communicate audibly.
That's like saying blind people are not disabled, it's just society that insists on visual stimuli
The deaf argument is that there’s no need for assistance of assistive tools. An all deaf town would experience no undue hardships unlike an all blind town.
I’m personally on the fence about it, but trust me when I write that we’ve seen whatever your gut instinct on this is before. Your gut take is just a hearing person speaking against Deaf theory written by Deaf people and the people far more involved in it are probably not going to see it because the Deaf don’t deal with the hearing as much as other disabled groups do, for obvious reasons.
How do people who have gained hearing feel about it? It seems like hearing would be important for a number of things besides communication, but maybe modern life doesn't require much?
There’s a variety of opinions. Born deaf often don’t like it. The later deafened you are the more you tend to want hearing back.
It’s not even about the communication per se, it’s also about the physical act of hearing which can be uncomfortable
That's interesting. So if your brain isn't developed to cope with hearing, it's overwhelming similar to someone with autism?
Yeah, you can build it up, but it’s unpleasant and slow and idk if it can get all the way.
Basically (from what I remember/understand) your body loves “use it or lose it” on anything resource intensive, and nothing uses resources like brain. So if you aren’t getting sound you let other stuff butt in on that area and you never build up auditory processing. Add in the fact that CIs don’t work the same as biological cochleas (seriously there’s videos with sound replicating various CIs) and you basically have to relearn how to hear.
Another connection is actually autistic people with issues with verbal communication often don’t have those issues with sign language. It’s processed differently but not in a way that makes it super hard to learn, it’s honestly easier to pick up than most languages.
Deaf people and hard of hearing people may be more likely to be involved in car accidents
https://journal.nafe.org/ojs/index.php/nafe/article/view/27
Because they kinda suck in a way wheelchairs don’t. Wheelchairs grant an alternative to ambulation. Cochlear implants give a new sense, one that those born without it literally don’t have the brain buildup to deal with. Like, look into those who got it and don’t use it. And often they’re forced on children by parents who will never learn sign language. I’m on board with children getting CIs as a teenager if a mental health professional with expertise in the deaf signs off that they weren’t unduly coerced, but it’s a major medical decision often forced or coerced on infants and young children by hearing parents and a hearing society to serve the interests of the hearing rather than the deaf child.
Fucking hell, hearing aids are uncomfortable. And not just because it’s something inside your ears. Like, it’s not the same as natural hearing (my loss is degenerative, I’ve had both). The sound filtration is worse and it overstimulates the brain. But hearing people get angry when you turn your ears off because you need a break because to many hearing people the point is to make you not deaf/hard of hearing. But the fact is we always are, it’s just that sometimes we’re using an assistive device that is often uncomfortable or outright painful.
Cochlear implants might be better seen as a lesbian having a platonic husband instead of a romantic wife. It’s uncomfortable assimilation and a worse solution in the absence of social pressure, and it gives the pressure ammunition. Absent the social pressures, it’s your choice. And to be upfront, I expect to get them once my hearing reaches the point they’re better than hearing aids. And also if I was a native signer they would have to earn a place in my skull and I’m angry that I’m not a native signer. As I implied, my hearing loss is genetic, and it fits pretty well to what your middle school taught you about a mono-allele dominant trait.
Wheelchairs are often seen as liberating to their users. Hearing aids and cochlear implants are often seen as burdens to their users. Nobody has to punish their child or nag their spouse into using their wheelchair, but for hearing devices, it’s common, it’s expected, it’s something you’re warned about beforehand. Please be understanding of the Deaf, we may not always be the nicest or easiest to understand, but nobody understands deafness better than us.
Actually in the wheelchair community, there can indeed be pressure to use the least assistive wheelchair possible. Chairs aren't 100% seen as liberating and there's a lot of nuance into why people pick certain chairs beyond finances. My aunt repeatedly fell out of her chair because she insisted on one made for a lower back injury than she has. She kept it for status, because she looks more able without the sides.
I guess 'differently abled,' just comes across as ableism to me. Not using visible signs of a disability, like a chair or hearing aids, can be internalized ableism. Some of the worst verbalized ableism I've heard has come from disabled communities. It's a very complicated topic, not least because disability is used to harm disabled people and take away their agency. And for many, there is a lot of grief with using assisitive devices.
That being said, I don't think people should be forced to change or to use devices they dislike. My aunt still uses her chair, it's not like we're going to drag her into another one or whatever. I just wanted to point out the internalized ableism that could be contributing to this attitude and word change.
It wasn't so long ago that the Civil rights Era stopped disabled people from being chained in attics and lobotomized and hid away. It's entirely reasonable to fear that association.
I mean people are surprised that autistic people dislike autism speaks
Had a class with some ABA techs who gave a presentation about Autism Speaks for their final project - they had no idea that criticism of AS/their entire field existed.
oh, ABA, you mean the "therapy" that for some reason causes a suicide rate of over 70%?
tho an "ABA tech" is cheaper than an actual medical professional since they just need a few weeks of training instead of several years
It’s hard to get away with “your presentation and profession is shit and you didn’t bother looking into any information other than your first google search” as a peer unfortunately. I did manage some gentle questions about AS’s one autistic board member’s exit….
It is fascinating that “behavioral health” seems to be just torturing/drugging kids until they get “better”/learn to comply. I didn’t get ABA, but very similar treatment.
it's not really that fascinating, of course the cheap and easy answer is a derivative of "beat it until it behaves", a large part of the states still have the paddles in school
In the states? At least in mine, parents have to give permission for the school to paddle. Most districts don’t want the liability or the paperwork. At least in public ed.
do I have to go into the levels of fucked your comment still leave the US at? most of the first world has not just stopped school corporal punishment, no it's just straight up illegal to beat your child as punishment.
If a parent here gave consent to corporal punishment, with a paddle no less, they would soon see their child in foster care and themselves in front of a judge.
I mean, it is fucked. But when we advocate against things that are fucked we have to be precise with the facts or else everything we say gets disregarded. [I speak up against this professionally - I am 100% on your side mate]
I know this is a point of some contention among the deaf community, but how do you feel about the development of a "standard" international sign? Personally, and I'm speaking as a fully hearing person, I think a basic international sign should be developed and taught to everyone. Not only to facilitate communication with the hard of hearing, but also in loud environments and with those who don't share a spoken language.
It's my understanding that a large portion of the deaf community is hostile to the idea of a universal sign from a cultural perspective, since each regional sign has cultural content. However I think it's a potential solution for numerous issues, with more pros than cons.
You misunderstand language itself, not just sign language, if you think a universal language is possible or even a good thing
All twenty of us Esperanto speakers just entered the chat! 🤩
It would certainly be limited and rudimentary; I wouldn't suggest a solution exists capable of any broad nuance. But gesture is a unique variety of communication, in that it can convey "innate" meaning in ways verbal language simply cannot, except in the case of onomatopoeia. Pointing is nearly universal, smiling is nearly universal, beckoning is nearly universal. Gesture is a spatial form of communication, centered around our primary means of material interaction with the world.
Grammar and syntax aside, I'd argue that it would be possible to assemble a vocabulary of universal concepts (eat, drink, sleep, travel, me, you, communicate, cooperate, come here, go away, etc). Certainly not a language for extended detailed conversation, but a codification and extension of gestures which are already nearly universal by virtue of their innate implications alone. Enough to communicate that you're hungry, but not enough to send for takeout.
A universal language, at the level of any other sophisticated language, is obviously impossible. A formal codification of simple gestures to communicate at the most basic human concepts is much more doable.
I can tell you only speak one language, or maybe another Latin based language in addition to English. If you'd learned something like Mandarin, you'd understand how complex, regional, and historical language is. It's based on layers and shifts constantly. Sometimes, that's specifically because people don't want to be understood by everyone.
I really recommend reading academic books about this topic if you are curious. My favorite is Neurolinguistics and Linguistic Aphasiology, by David Caplan. You may also enjoy Chomsky's works because he talks about commonalities in language or universal language.
There's no need to formally codify those hand gestures, because we innately already understand and make them. Making eating motions (which may look different depending on regional utensils) is pretty universal right? But it looks different in different places.
I am familiar with the regionality of language. I don't understand your point, you're simultaneously saying that you can't have universal understanding, but we have gestures we instantly understand instantly so there's no need to codify them, but they look different.
I think you're wildly overestimating the scope of my proposal.
You are simply moving goalposts. My point is that I disagree with your idea of making sign language universal or formally making even a rudimentary universal sign language. I think that would be impossible if you understand language itself. I gave you resources so you could educate yourself about why.
Yes, the sign for eating would look different in China vs Ethiopia vs the US. So what sign are you going to have it be to imitate eating in your formal language? Do you see how this can perpetuate colonization?
My goalposts are in precisely the place they started: a collection of basic international gestures to facilitate the most basic communication. Where are you jumping to colonization? Where did I say that my cultural group gets to decide what the signs are? You're, again, wildly overestimating the scope of my proposal and jumping to ridiculous, unsubstantiated conclusions.
You get a group of signers from around the world to develop an international pidgin (like they already do informally at international gatherings) and come to consensus based on commonality. When the majority agree on a sign, use it. Where there's little agreement, choose a new sign. No finger spelling, no complex abstract concepts, just a formalization of gestures most people could probably figure out anyway. I fail to see how that perpetuates colonization unless that's what you're setting out to do with your methodology.
I didn't provide a conclusion, I asked you a question - how do you pick the official, global sign for eating? What will it look like?
If you can't understand the colonization aspect, then please read the books/authors I listed previously. Having a majority decide language for others/everyone is pretty classic colonization. That's part of why native Americans were forced to learn English (many of your arguments are very similar to why colonizers believed English should be established as a global lingua franca)
"It would be nice to develop an auxiliary sign language to bridge the accessibility gap between the hard of hearing and those who don't learn a dedicated sign"
"You're just as bad as the colonizers that decimated native American cultures"
Get out of here with that bad faith savior complex nonsense. Teaching indigenous people English wasn't the problem, the problem was beating children for using their native language. I guess you think literacy is racist too because literacy requirements were used to disenfranchise black Americans, huh?
Your sanctimonious colonization comments are dripping with irony. I asked a question, directly to another person, about their opinion of the concept as a deaf/hard of hearing person. You interceded uninvited, deliberately ignored the explicitly stated context of the question (gestural languages having unique properties from verbal ones) so you could shoehorn in your opinion about a topic explicitly excluded by that context, which you smugly assumed I wasn't familiar with, purporting the relevance by referencing authors who wrote very little about the actual topic at hand.
You want to talk about colonizers, look at your own actions here.
Never said that. Strawman. 🥱
I get that there are better choices now, but let's not pretend like a straw you blow into is the technological stopping point for limb-free computer control (sorry if that's not actually the best option, it's just the one I'm familiar with). There are plenty of things to trash talk Neuralink about without pretending this technology (or it's future form) is meritless.
I feel like I’m going nuts, is eye controlled adaptive tech really that obscure? We’re not talking about maybe letting people walk again or giving them otherwise unattainable control over a computer, we’re talking about a different mouse input. The risks should be proportional to the gains.
Can you take a moment and imagine some possibilities of taking input directly from someone's mind and applying it without needing to use your body? I know moving a mouse doesn't seem impressive, but it demonstrates success at a technological concept that still seems impossible. I can't speak for the ethics because I don't know how voluntary the subjects are for the research, but this is very exciting for me, because it will inevitably become more sophisticated.
Cool, when you can upload your thoughts somewhere we’ll be having a different conversation about its risks and uses. But what’s happening right now is that they did brain surgery on a man to let him move a computer mouse.
Do you think we'll get to that advanced level of use without experiments? And do you think that this is wrong despite consent to the procedure?
I don’t accept that disabled people must be sacrificed at the altar of Progress, and I think the entire process for how they recruit patients and explain the capabilities and risks of the implant deserves extreme scrutiny. There’s a reason doctors have to get hours of education in ethics to be considered competent, it’s a lot more complicated than “just do whatever if it can technically work for a bit.”
Your criticisms are reasonable ones.
Seems to be a much faster interface with bigger bandwidth.
Is it worth risking dying to be able to move a mouse slightly faster than you can move your eyes and blink? If your answer to that is yes that’s your body, but I think it’s important to contextualize that the options here aren’t brain implant or nothing.
Because instead of a mouse cursor today, it could be a robotic leg or anything else tomorrow.
Being able to control electronics with the same ease we do our own body has so many benefits.
Except there are other companies working on this problem that don’t come with the baggage Musk brings with him.
One is even looking at using veins to insert the microchip.
https://www.massdevice.com/brain-computer-interface-bci-companies/
Why not? Nothing wrong with research and development as long as everyone participating in the test is an informed, consenting adult IMO. The advancements could make current accessibility tech even better. For one reason or another, a quadriplegic person decided they were willing to take the risk, so maybe they consider current accessibility tech for quadriplegics to be insufficient and wanted to try for something better?
Well damn, I didn't know.
There are some politically correct terms that are not well liked by the people they describe:
I cannot speak to any of these, however, I learned that that you should just ask. If you can’t ask, put the “human” first such as people with disabilities or people who are deaf, blind, etc. Latine is another term I’ve heard, but in the community, there are those that like it and those that don’t.
This is correct
What you said is often true but not always. Some communities prefer person-first language, some prefer identity first language.
For example, generally speaking, "autistic people" is preferred over "people with autism". The reasoning being "this is just part of who I am, it's not an affliction that I have."
I'm not autistic but I have lots of friends who are, and they all prefer to say "I'm autistic" rather than "I have autism".
Like you said, it's best to ask, or just copy the language that the person uses for themself.