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While I'm not deaf, I am in ASL 1 at the moment, and I saw that there wasn't a Sign Language room, so I'm making one. This thread is for talking about Signing classes, deaf culture, etc. Or stuff like that.
I for one LOVE learning ASL. It's a lot of fun for me, and I never get tired of learning new signs and more about the deaf culture. I especially love seeing someone on T.V be deaf(like that one women on Doctor Who a while back), or see someone deaf in public. I'd love to hear you guys talk about some stories about signing, or just about deaf culture in general. If any of you here are deaf, I'd especially love to chat. Also, any tips on signing would be appreciated as well, I'm still having a hard time signing fast and making out fast signing ;-;.
Hi! I don't know any sign languages, but I'd really like to learn too. I'm not culturally Deaf, but I'd very much like to be able to easily talk to those who are, especially as I lose my hearing more. I'm thinking of picking up Auslan (Australian sign language, which is more like BSL in the UK than it is anything like ASL) in the next few years if my university studies give me a chance. I'm single-sided deaf and have a (milder form of the) disease called neurofibromatosis type 2, which causes benign tumours to grow on the hearing/balance nerve and in other areas of the brain. I already had an acoustic neuroma removed and have no hearing left on that side (the right).
I've dithered for years over picking a sign language because I'd love to live overseas, but it looks likely that I'll do at least a PhD in Australia and I should get a job before worrying about learning languages for overseas. :P It's just that nobody really speaks Auslan except in Australia, but if that's where I end up for a lot of the future, then, hey, Auslan would be very useful. I'm moving to a city-based school next year so I should be able to find classes at least. What's the class environment like if you can tell me? I understand it's a lot easier to pick up while still being able to hear English for self-evident reasons so I'd like to hop on that.
It's a pain that, because sign languages develop newly like languages, there are so many of them -- there aren't that many of us out there to speak in them, after all. It's a pretty huge misunderstanding that there's some kind of singular sign language, but it's not true at all; the languages are quite unique because they arose out of need and within deaf-dominated communities, not being designed for a globalised world. Which is cool, but a pain in a globalised world.
I've forgotten what it's like to hear out of two ears and I don't miss it or anything. Eventually I won't be able to hear out of both, and since it's unlikely there'll be good enough brain stem implants by the time that happens, I've accepted it. It's just part of who I am and how I experience the world. That's another reason I'd like to be able to interact with Deaf people -- unlike a lot of people with acquired hearing loss, and pretty much everyone with good hearing, I don't think there's anything really bad about that, the only difficulties I have are where society will not accommodate deaf people. I like seeing positive portrayals of deaf people for that reason, but also because I will be deaf too.
I can't lip read because my vision is waaay too bad, and I hear maybe 1/8 words in a noisy group setting (almost perfect listening skills in very specific conditions, just I can't tell what direction sounds come from). Learning Auslan wouldn't help me much there, but I would be able to have an interpreter, and I'd possibly be able to socialise more with other hard-of-hearing people, which is very important to me. I was delighted to discover at one of my university classes we had transcription because there was another deaf student; we couldn't talk at all outside email and had to resort to scribbling illegible notes. :( I do get excited meeting other HOH/deaf people though, there's just so much about it that I can't really explain to other people easily, especially the kinds of awkwardnesses that arise. I could give you some anecdotes but they mostly just revolve around being misunderstood or getting very annoyed at people!
OP I'm curious, what got you so interested in learning sign language and in Deaf and deaf culture, if you don't mind sharing?
Everyone, if you notice something is up with your hearing, please get it checked! It's not just an old age thing. There are all kinds of sources of acquired hearing loss, including infections, and not all are untreatable. Even for someone like me who is untreatable, just knowing what's going on made things sensible, and made getting accommodations possible. There were things blatantly off with my hearing since I was 13 and I blamed it on audio equipment literally every time.
Well, I just thought signing would be fun. I already used my hands for gestures a lot when talking, so I thought it'd be easy for me(which it is). As fro deaf culture, I didn't really know anything about it or find interest in it until my ASL class started learning about it, that's when I started really enjoying learning about it. Thanks for talking about yourself, btw, it's always interesting to hear people's stories about their experiences with losing their hearing or just stories about the deaf commun ity in general. Thanks :3
Honestly I can't imagine how hard it would be to be deaf. There is so much stuff like music that I just take for granted, and the thought of losing one of my primary senses (namely sight or sound) is the only thing that I'd ever contemplate suicide over, as they are the two things which my entire set of interests is based around. Honestly even the thought of losing half the depth of music and speech is scary to think about. It is why I respect the people who are eithe learning or actively practicing sign language more than almost anyone else in the world. The ability to give someone even the perception of part of one of their senses that they have lost/never had is one of the greatest gifts that I think you could give anyone, even if you can't reunite them with basic pleasures like music or hearing foreign languages that you never understood yet still enjoy to listen to. Therefore, I am here not as a sign language speaker or a deaf person, but as someone thanking you for the time and effort that you put into making the lives of deaf people just a little bit more bearable.
Honestly I can't imagine how hard it would be to be deaf. There is so much stuff like music that I just take for granted, and the thought of losing one of my primary senses (namely sight or sound) is the only thing that I'd ever contemplate suicide over, as they are the two things which my entire set of interests is based around. Honestly even the thought of losing half the depth of music and speech is scary to think about. It is why I respect the people who are eithe learning or actively practicing sign language more than almost anyone else in the world. The ability to give someone even the perception of part of one of their senses that they have lost/never had is one of the greatest gifts that I think you could give anyone, even if you can't reunite them with basic pleasures like music or hearing foreign languages that you never understood yet still enjoy to listen to. Therefore, I am here not as a sign language speaker or a deaf person, but as someone thanking you for the time and effort that you put into making the lives of deaf people just a little bit more bearable.
Thank you! Though, on the subject of losing hearing, a lot of deaf people really don't mind, even if they weren't born deaf. They have plenty of ways of coping with hearing loss.
Honestly I can't imagine how hard it would be to be deaf. There is so much stuff like music that I just take for granted, and the thought of losing one of my primary senses (namely sight or sound) is the only thing that I'd ever contemplate suicide over, as they are the two things which my entire set of interests is based around. Honestly even the thought of losing half the depth of music and speech is scary to think about. It is why I respect the people who are eithe learning or actively practicing sign language more than almost anyone else in the world. The ability to give someone even the perception of part of one of their senses that they have lost/never had is one of the greatest gifts that I think you could give anyone, even if you can't reunite them with basic pleasures like music or hearing foreign languages that you never understood yet still enjoy to listen to. Therefore, I am here not as a sign language speaker or a deaf person, but as someone thanking you for the time and effort that you put into making the lives of deaf people just a little bit more bearable.
Hey I know you meant this kindly, and I deeply appreciate the empathy and participating in the thread since its a little slow, but I just wanted to express that this post was also a little insensitive, saying this as someone who is hard of hearing and going to be deaf. It doesn't really feel nice to be told something like 'a life like yours is not worth living or adapting to because you can't experience something I can'. I think my life is not worth living semi-regularly, because I am severely mentally ill, but I've never once had that thought about my current hearing or sight situation, believe it or not (btw I'm half-blind as well since nearly birth, which I think gave me strength to cope with physical disability since I'm used to it, and I'm losing sight in my right eye, NF2 also predisposes you to cataracts under the age of 30 as well as tumours on the optical nerve but at least cataracts can be removed I guess?).
I grew up thinking if I lost part of my hearing too I'd just give up. I never knew that because of one single genetic disorder causing brain tumours, I'd lose half my hearing, half my sight, the ability to shower standing or walk long distances without a cane/frame, and develop seizures by twenty-two. I might've just committed suicide on the spot if I'd known that. I'm glad I didn't.
I have a little personal joke. I was a very sickly kid, and I would always say, 'At least it's not that bad! I could lose my hearing or become paralysed or something! Haha I would die.' Well, I didn't. So then I said, 'Well, at least it's not that bad! My tumour won't recur, I could have something chronic'. Next tumour gave me epileptic seizures. Finally I said, 'Well, it could be worse. I could have some kind of progressive or degenerative disease.' The next year I was diagnosed with the causative disease, and I learned to stop talking like that, because none of my life ended up like I expected it, and I ended up going into neuroscience and very happy for it, and I'm mildly superstitious anyway ;p
There was a point in my life where not a day went by without the thought 'in five years I may never experience this again, because I'll be fully deaf', but I still never thought, 'well, I'll just kill myself'. It didn't happen, even though I've had a pretty difficult time with some of the hearing stuff. It is hard to contemplate, but everyone has their own challenges and their own strengths and triumphs.
I know I'm lucky to enjoy music (I was even given permission to listen to my iPod in class and standardised exams because my anxiety was that severe when I was younger, it does bother me that I might lose that coping mechanism so I'm learning to make use of tactile stuff) and I try to make the most of it while I know I can, same as everything else, but I have a wide array of hobbies that don't involve hearing. Film is very hard for me, even with subs, but I'm very passionate about literature, love to play video games, enjoy art and writing and poetry [which is very aural for me btw], collect things, program for fun, enjoy going to the sea and to forests, try to learn a lot of new things, follow fashion, adore my degree [neurogenetics/mathematics], etc. etc. honestly I'm just listing the things that I can see a related object to on my desk...
I consider those very happy, basic pleasures by which I am enriched. Let alone all the myriad little sensory things that make the world lovely to me. I learned to appreciate all of those tiny things as something that I needed to be as happy as much as and along with a good life situation when I was in hospital; all of those things felt new and fresh to me.When I'm not severely depressed, I make a point of taking pleasure out of what I experience and paying attention to detail. I don't blame anyone for feeling bad about sensory issues, I'm constantly irritable over not hearing right, but yeah.
I understand completely that it's a personal thing and you're not aiming it at anyone but your own imagination of what being deaf would be like, but it comes off degrading at worst when you say it around deaf people and pity at best (btw, I'm also saying this as someone whose hearing is very important to them, I do know most people consider it a negative!). But the reality is you don't know what it's like to be deaf, whether you were born with it or acquired it, how you would adapt. And in likelihood it would be very hard. But most people who lose their hearing go on living because living is nicer than being dead usually, and they find ways to live and ways to experience old loves anew.
It's depression that kills usually, and I think the alienation is very hard as well as the inability to maintain old hobbies. But acquired hearing loss like anything else requires adjustment and time and support from those around you (and ideally others in your situation) and you can get there. That being said, it's very very good you know how crucial your senses are, and I hope you will take care of them and look after them proactively (eye and ear checks if something's amiss, even if it seems little, not blasting your ears unnecessarily, etc.)! Your senses are primary ways you navigate your life and the huge adjustment for a lot of people is figuring out how to navigate the world again. But it is done every day and part of life, and change happens to everyone. This is one of my favourite quotes:
'We all have an unsuspected reserve of strength inside that emerges when life puts us to the test.' —Isabel Allende
Anyway the thing is my life is very bearable and so is it for many deaf people, who have more profound deafness than me and can speak to their own situations because they're individuals. Many culturally Deaf people even view it as a positive (something I don't really want to write a long post explaining since I already wrote a long post below) and find comments like this really offensive actually, because they would like to change how people view Deafness and disability.
The other reason it's insensitive is most people who are practising sign language are deaf themselves and nobody is giving them anything except an accommodation to participate in hearing society like hearing people! :p But I think it's very cool of people like the OP to get actively involved with deaf communities and they seem very knowledgeable, I really appreciate people who make the effort like that. Who knows, maybe OP will end up becoming an interpreter or live captioner (requires mad technical skill btw, at max speed I type at over 170 wpm so when I thought I had good hearing I looked into it as a career). I'm not begrudging them the compliment at all btw :D
Here's a story: I love rhythm games. I'm absolutely mad for them, especially ones with own-audio procedurally generated gameplay. With rhythm games, you can always sight read, but so much of it is knowing the song, knowing the level, knowing how to keep time (something I can definitely get better at), knowing the game, predicting things coming up via hearing. I know I probably won't lose interest in them before I lose my hearing. I don't know if I'll still be able to enjoy rhythm games when I do. Maybe the lack of sound (many rhythm games are built around audio feedback and immersive sound play) will kill it for me (it's less likely I'll just embrace the challenge instead of going to play more strategy RPGs, my other favourite genre, but you never know, I seriously wildly love rhythm games). Maybe I'll play games that have tactile feedback like Taiko or another game with an instrument-like controller (vibration is huge for deaf people experiencing rhythm so there's that), or games that have very topological maps like Audiosurf (good speaker, physical contact with the vibrations, look at the slope of the map, you can play like this and people do).
Rhythm games, because of their heavy focus on, well, rhythm are generally much more deaf-friendly than games with important sound cues like LoL/Dota/FPSes. If you lost your hearing, and I seriously hope you never do, no, music never would be the same for you and not everyone has a miracle, but there would be music you could enjoy, and ways you could enjoy it.
Kids at Deaf schools often get classical music classes and learn to enjoy music from an early age through a strong emphasis on rhythm and structure. One of my favourite jpop singers, Ayumi Hamasaki, is deaf in her left ear. I guess what I'm trying to say with this is a) automatically assuming people are deprived is a little off b) humans are incredible at adapting to previously unthinkable paradigm shifts c) there are a whole bunch of fully deaf members on Smogon and they can talk for themselves if they so choose but nobody likes being pitied, even with good intentions. Empathy is nice, however, thank you~ I really feel for people who feel that they lose out on things, I often feel this too about different things, it's not a nice feeling, and music is a very deep passion for some people. So I'm not trying to exclude the experiences of fully deaf people or musicians with acquired hearing loss, but instead just trying to talk for myself, one individual,, since it is different for everyone, and offer a new perspective.
I'm sorry for the long rant and if I came off as scolding, I honestly just like to try to take the chance to educate people about this when it comes up, both because I would like people to understand that everyone has their own perspective on a 'disabled' life (personally I care a lot about being physically excluded because I can't get accommodations, poverty, and unemployability u_u), and because I would also like to tell people that they are stronger than they know and it will probably show up when they are tested one day.
We all have experiences we think we could never endure, and they're often as awful as we thought, but what we don't anticipate is that it's worth enduring them and we can never really say the extent of something's effect on us without going through it as our own self.
In the interests of making a positive contribution to the thread, I would like to provide some suggestions for everyone dealing with deaf, Deaf, and hard-of-hearing (HOH) people, since we are everywhere, and a little perspective on what it can be like! I put it under a hide tag because this post is very long and this could be a long post by itself (it took me so long to write you have no idea .-. but I am very passionate about this and would view it as remiss if I didn't do my best to talk, even if I'm not making sense).
* disability affects everyone differently. Many people who have hearing 'issues' don't even consider themselves disabled or it to be a negative thing, just part of how they experience the world, just want to be accommodated
* One of the things that hurts the worst about an acquired hearing loss or deafness in situations where you are around hearing people is being excluded unintentionally. There are actually pamphlets specifically about the mental health effects of being hard of hearing at my local hospital! When you're in a group situation, somewhere noisy, or in some sort of scenario that impedes hearing (family gatherings are a huge one), it is very very convenient to leave the hard of hearing person out of the conversation. It's never meant maliciously, but it's done generally out of forgetfulness or impatience that honestly feels a little like being left behind. sometimes people won't repeat things, sometimes people won't stop to include a person, sometimes people will sit the deaf person at the end of the table intentionally but just out of sheer ignorance and negligence, sometimes people won't explain things to you and dont really know why its bad. the thing is its very different from before in a way you perceive more than anyone. it's easy to forget, just note it when you get reminded and you will form a habit of adjusting.
(like I often ask my mother to explain what's going on in a conversation so I'm not sitting there listening to empty buzzing and she won't because she can't be bothered and it hurts that everyone is fine with my silence now because I can't hear and there were many arguments at first about being excluded in family situations. her perspective is, I wasn't in the conversation so why do I need to know, but my perspective is, once I wouldve been able to hear you fine since you're next to me and choose myself whether I wanted to attempt to get involved in the conversation, and me asking you what's going on is me attempting to get involved in the conversation except I have to do it different 'cause I can't hear. I think this anecdote can be extrapolated very well to understanding how people with disabilities generally want to be treated in the case of a new disability btw)
* being partially hearing can lead to a lot of embarrassing or awkward situations because your hearing correctly will be assumed. literally everyone should have had one of these experiences, but imagine these happening to you on a constant basis, especially if you socialise. Basically just try to empathise and understand their personal context.
* not hearing somebody and they thinking you're ignoring them, except this happens every day. Use visual cues like waving if calling isn't working. I personally hate being touched if I'm not hearing because it unnerves the shit out of me, I can't hear you approaching me and I'm going to get startled, on the other hand other people are more chill about it and would prefer a tap. visual cues are a safe option for someone you don't know well in nearly all situations
* dramatic mishearings (over the years I've learned to become a lot more patient because I'll hear something horrible, have to slow down and ask for a repeat, and realise I misheard something innocuous at least once every two weeks, and I had to learn to control my emotions a lot more immediately when I'm in a conversation, that doesn't come automatically for someone with acquired hearing loss). sorryyy
* a really good way to find out if a person with bad hearing actually heard you is a) directly communicate it to them rather than assuming they overheard b) ask them a question that can't just be answered with 'yes' or 'no' ('you get that' is a nightmare of a question 'cause probably if I don't say 'yes' with 100% certainty no I didn't lol, or I'll need it repeated to know I did, which is not fun in, say, a chemistry lab). if they answer something off you can easily rat out a mishearing. a lot of these are good general 'dealing with noisy/crowded area/confusing technical stuff' workplace skills btw
* straining to hear all day with hearing aids or partial hearing loss can be really exhausting and a huge social drain on people that you might not notice happening, it's like anyone else, sometimes quiet socialisation and conversation is nice, but nobody wants to be excluded from every activity. If the person can gain something from an event just say you thought they might like to hang out, it's up to them to indicate whether they don't want to go to those types of activities. because hearing is so variable, especially over life, it's difficult to explain the variety of ways people who are fully deaf experience things like music, concerts, films, etc. that might seem alien to a hearing person. see if you can get hearing aid equipped places at cinemas and stuff if they use hearing aid facilities in class or whatever, I don't know, that's just like any other social situation, you don't have to treat it like a huge taboo unless it deeply upsets the other person, negotiate each other's needs and everyone will be happier :)
* speaking of straining to hear: a lot of people have some leftover hearing or tinnitus can be aggravated by a lot of noise etc. so it's not cool to just assume a deaf person can't hear the kind of noise pollution that would piss anyone else off unless they indicated. also if they have leftover hearing noise pollution is even worse for us because it is a massive interference for hearing aids, something that's always good to know.
* not knowing how loud or quiet is okay to speak, especially at first, its probably an accident and we probably know, that being said if I can't be heard because I'm talking too quietly I'd rather my conversational partner ask me 'hey speak up a little yo' than just ignore it diplomatically and end up not hearing a word I say!
* having trouble introducing yourself to people, because you might have some kind of environmental factor that impedes your hearing. You feel bad or uncomfortable being like 'Hi I'm __ and I'm deaf as fuck, can you please stand to my left or else I won't hear a word you say?' and reminding people to do it. It's not easy to remember to adjust around someone you don't know well to speaking to them but practice makes perfect.
* don't do the thing where you speak really slowly to people that can't hear well unless they ask for it, indicate in some way its needed, whatever. It comes across as super patronising and condescending, and makes your hearing problems ultra conspicuous. Furthermore if the preson is lipreading and you're not moving your mouth in an ordinary way to form sounds they're not going to understand you. So don't exaggrate and overenunciate. Do try to speak a little more clearly, if they're lipreading keep a relatively even tone and keep your face and mouth unobscured. Speaking of which, sometimes I come off as slow because I'm trying to reparse what I heard and understand and I hate that, I get patronised a lot, give me a second to hear you
* you're gonna be asked to be repeated, sorry, I personally hate repeating myself with a passion but I became a lot more tolerant of it when every second word out of my word was 'what?'. often I just missed a few words and will stop you when needed. If your first repeat doesn't work, try to avoid going nuclear and reword any words that might be a little hard to understand. 'never mind' feels so bad if it's unnecessary, yes I know it's extra effort to include me but you know... I would like to know myself if it was important or I can react to it
* something I've found out a lot of people don't know: people who are born deaf and raised in Deaf (capital d) culture may not have the local language(s) as a native tongue and may not be as fluent as you expect, including in writing. sign languages are very, very, very different from fingerspelling and written communication, and if you're born deaf, especially in a deaf family or being communicated to with sign language a lot, you're going to pick that up faster than a language you won't hear when you're small. otoh doesn't apply for everyone, a lot of born deaf kids have plenty of exposure to English early on, but it's just something to consider if you're dealing with someone who speaks sign language most of the time and you're wondering why their English might be off, maybe they don't have as much experience using it as you or their educational and formative experiences were not in that language, so they speak it as an acquired language (that is structured very differently to many sign languages). literacy varies for everyone anyway.
* if you're unsure how to handle someone deaf or HOH you'd like to include in your friend group, just ask them about shit (online or whatever if you prefer), but honestly just having them around a bit might help you both adjust to each other.
* something that can be confusing is environmental hearing impairment! this is just basically where your hearing loss is aggravated by situational factors. this is usually noise, but for me it's where someone is standing when they talk to me (I have a good ear and a bad ear and I can go from not hearing a single thing to hearing you perfectly fully baesd on angle), hearing aids, speech type, conversation type (amount of words understood very obviously increases with amount of words known and frequently used), things that are distracting, etc. its the same for you but you probably have more control over these factors. I do the 'pretend I'm one of those "deaf-mutes"' thing every now and then but in reality if I go from hearing you fine one day to not the next day uh thats just sorta how it is, and it might seem weird and give you difficulty in adjusting but its real!
* sorry if I didn't hear your name or I thought I did and called you something similar sounding but wrong, I promise I'm trying to get it right, asking name again etiquette is awkward like you wouldn't believe when you can't hear and most people, including the hearing, who fuck up names with new people would be grateful to know if they did. it being due to a hearing impairment doesn't change shit in how you address it, unless you're sensitive about it (and I get this like you wouldnt know due to a weird name, so just providing a thought !)
there are a lot of little things like this that are just day to day experiences for deaf/hoh people and I didn't encompass 1/30592309 of them and they come up all the time but I think those ones might be useful for people to know. If you want to know something feel free to ask me questions anytime but keep in mind I don't wear hearing aids or have an implant
COOL PROACTIVE THINGS YOU CAN DO FOR YOUR DEAF LOVED ONES that would make my life rule if just my mother and brother, who talk to me on the regular, did them naturally:
* eye contact and other forms of body language are nice visual cues that help when I can't understand a situation or if something's directed at me. I have severe social anxiety so I totally understand but I'm just saying this is a nice way to include anyone if you're up to eye contact
* if you're hanging out with someone deaf, try to let them pick where you sit etc. they will probably pick a better place for them to hear than you (or see if they need to lipread). Includes seating and stuff.
* try to keep a clear flow of conversation that a) includes the person in question via body language b) doesn't involve everyone interrupting each other. This sounds really nitpicky but when you hear people fully you can hear a lot of subtle things that indicate a person is done speaking, like they breathe different, they might use a different tone of voice (upspeak etc.) to indicate end of sentence, etc. and you also get to react faster.
* don't assume directional hearing. a routine conversation in my house is 'mom where are you' 'here' 'where's "here"' 'here' meanwhile I've tilted my head 360 degrees and no clue because she's in another room and I'm searching the entire house. IT SOUNDS REALLY FUNNY but its really not by about the fiftieth time :(
* if you have someone with acquired hearing loss around continue to talk to them and you will figure out a good way to talk to them like before probs. just at first you might have to be a bit more proactive in interlocuting to explain what's going on or including them where they normally would've had something to say or know something. what I'm going to suggest is better for a person who is more timid and will just say 'I didn't hear sorry' rather than interrupt the flow of conversation. specify context! i.e. sometimes if you're not sure replacing relative words like 'that' 'this' 'there' that you would usually use to indicate objects and subjects of a sentence with the actual thing that was said. you dont have to repeat an entire sentence every time but here is an example: you're having a very fun and cordial conversation with your relatives about immigration and 'what do you think [about that]' becomes 'what do you reckon about mass deportation then' and then you elaborate if necessary. for other people just talking like 'usual' and saying 'oh what about that then' and getting a 'what about what?' and answering properly works perfectly.
honestly if I don't want anyone to interlocute an inane conversation I will say LEAAAVE MEEE OUUUT OF IT :))))) thank them but say nothanks or just put on music depending on what is going on. (i have a dysfunctional household)
a really nice and cool experience for me was going to a music festival with my brother and his friend. now literally nobody can hear at music festivals during the concert but I couldn't hear outside of them very well either because there were people running around crossfaded everywhere and it was crowded. my brother and I talk via text almost exclusively anyway so what we just did was if I indicated I couldn't hear and talking wasn't working, we texted our thoughts and what we were going to do, and since I didn't know my brother's friend at all, if my brother wanted to include me in on something he just showed me his phone so I saw good jokes etc. my brother could've been a dick and just gone off with his friend instead of hanging out with his loser older sibling but but he made an active effort to include me and respond to my excited texting and that was one of the best days of my life.
Hey I know you meant this kindly, and I deeply appreciate the empathy and participating in the thread since its a little slow, but I just wanted to express that this post was also a little insensitive, saying this as someone who is hard of hearing and going to be deaf. It doesn't really feel nice to be told something like 'a life like yours is not worth living or adapting to because you can't experience something I can'. I think my life is not worth living semi-regularly, because I am severely mentally ill, but I've never once had that thought about my current hearing or sight situation, believe it or not (btw I'm half-blind as well since nearly birth, which I think gave me strength to cope with physical disability since I'm used to it, and I'm losing sight in my right eye, NF2 also predisposes you to cataracts under the age of 30 as well as tumours on the optical nerve but at least cataracts can be removed I guess?).
I grew up thinking if I lost part of my hearing too I'd just give up. I never knew that because of one single genetic disorder causing brain tumours, I'd lose half my hearing, half my sight, the ability to shower standing or walk long distances without a cane/frame, and develop seizures by twenty-two. I might've just committed suicide on the spot if I'd known that. I'm glad I didn't.
I have a little personal joke. I was a very sickly kid, and I would always say, 'At least it's not that bad! I could lose my hearing or become paralysed or something! Haha I would die.' Well, I didn't. So then I said, 'Well, at least it's not that bad! My tumour won't recur, I could have something chronic'. Next tumour gave me epileptic seizures. Finally I said, 'Well, it could be worse. I could have some kind of progressive or degenerative disease.' The next year I was diagnosed with the causative disease, and I learned to stop talking like that, because none of my life ended up like I expected it, and I ended up going into neuroscience and very happy for it, and I'm mildly superstitious anyway ;p
There was a point in my life where not a day went by without the thought 'in five years I may never experience this again, because I'll be fully deaf', but I still never thought, 'well, I'll just kill myself'. It didn't happen, even though I've had a pretty difficult time with some of the hearing stuff. It is hard to contemplate, but everyone has their own challenges and their own strengths and triumphs.
I know I'm lucky to enjoy music (I was even given permission to listen to my iPod in class and standardised exams because my anxiety was that severe when I was younger, it does bother me that I might lose that coping mechanism so I'm learning to make use of tactile stuff) and I try to make the most of it while I know I can, same as everything else, but I have a wide array of hobbies that don't involve hearing. Film is very hard for me, even with subs, but I'm very passionate about literature, love to play video games, enjoy art and writing and poetry [which is very aural for me btw], collect things, program for fun, enjoy going to the sea and to forests, try to learn a lot of new things, follow fashion, adore my degree [neurogenetics/mathematics], etc. etc. honestly I'm just listing the things that I can see a related object to on my desk...
I consider those very happy, basic pleasures by which I am enriched. Let alone all the myriad little sensory things that make the world lovely to me. I learned to appreciate all of those tiny things as something that I needed to be as happy as much as and along with a good life situation when I was in hospital; all of those things felt new and fresh to me.When I'm not severely depressed, I make a point of taking pleasure out of what I experience and paying attention to detail. I don't blame anyone for feeling bad about sensory issues, I'm constantly irritable over not hearing right, but yeah.
I understand completely that it's a personal thing and you're not aiming it at anyone but your own imagination of what being deaf would be like, but it comes off degrading at worst when you say it around deaf people and pity at best (btw, I'm also saying this as someone whose hearing is very important to them, I do know most people consider it a negative!). But the reality is you don't know what it's like to be deaf, whether you were born with it or acquired it, how you would adapt. And in likelihood it would be very hard. But most people who lose their hearing go on living because living is nicer than being dead usually, and they find ways to live and ways to experience old loves anew.
It's depression that kills usually, and I think the alienation is very hard as well as the inability to maintain old hobbies. But acquired hearing loss like anything else requires adjustment and time and support from those around you (and ideally others in your situation) and you can get there. That being said, it's very very good you know how crucial your senses are, and I hope you will take care of them and look after them proactively (eye and ear checks if something's amiss, even if it seems little, not blasting your ears unnecessarily, etc.)! Your senses are primary ways you navigate your life and the huge adjustment for a lot of people is figuring out how to navigate the world again. But it is done every day and part of life, and change happens to everyone. This is one of my favourite quotes:
'We all have an unsuspected reserve of strength inside that emerges when life puts us to the test.' —Isabel Allende
Anyway the thing is my life is very bearable and so is it for many deaf people, who have more profound deafness than me and can speak to their own situations because they're individuals. Many culturally Deaf people even view it as a positive (something I don't really want to write a long post explaining since I already wrote a long post below) and find comments like this really offensive actually, because they would like to change how people view Deafness and disability.
The other reason it's insensitive is most people who are practising sign language are deaf themselves and nobody is giving them anything except an accommodation to participate in hearing society like hearing people! :p But I think it's very cool of people like the OP to get actively involved with deaf communities and they seem very knowledgeable, I really appreciate people who make the effort like that. Who knows, maybe OP will end up becoming an interpreter or live captioner (requires mad technical skill btw, at max speed I type at over 170 wpm so when I thought I had good hearing I looked into it as a career). I'm not begrudging them the compliment at all btw :D
Here's a story: I love rhythm games. I'm absolutely mad for them, especially ones with own-audio procedurally generated gameplay. With rhythm games, you can always sight read, but so much of it is knowing the song, knowing the level, knowing how to keep time (something I can definitely get better at), knowing the game, predicting things coming up via hearing. I know I probably won't lose interest in them before I lose my hearing. I don't know if I'll still be able to enjoy rhythm games when I do. Maybe the lack of sound (many rhythm games are built around audio feedback and immersive sound play) will kill it for me (it's less likely I'll just embrace the challenge instead of going to play more strategy RPGs, my other favourite genre, but you never know, I seriously wildly love rhythm games). Maybe I'll play games that have tactile feedback like Taiko or another game with an instrument-like controller (vibration is huge for deaf people experiencing rhythm so there's that), or games that have very topological maps like Audiosurf (good speaker, physical contact with the vibrations, look at the slope of the map, you can play like this and people do).
Rhythm games, because of their heavy focus on, well, rhythm are generally much more deaf-friendly than games with important sound cues like LoL/Dota/FPSes. If you lost your hearing, and I seriously hope you never do, no, music never would be the same for you and not everyone has a miracle, but there would be music you could enjoy, and ways you could enjoy it.
Kids at Deaf schools often get classical music classes and learn to enjoy music from an early age through a strong emphasis on rhythm and structure. One of my favourite jpop singers, Ayumi Hamasaki, is deaf in her left ear. I guess what I'm trying to say with this is a) automatically assuming people are deprived is a little off b) humans are incredible at adapting to previously unthinkable paradigm shifts c) there are a whole bunch of fully deaf members on Smogon and they can talk for themselves if they so choose but nobody likes being pitied, even with good intentions. Empathy is nice, however, thank you~ I really feel for people who feel that they lose out on things, I often feel this too about different things, it's not a nice feeling, and music is a very deep passion for some people. So I'm not trying to exclude the experiences of fully deaf people or musicians with acquired hearing loss, but instead just trying to talk for myself, one individual,, since it is different for everyone, and offer a new perspective.
I'm sorry for the long rant and if I came off as scolding, I honestly just like to try to take the chance to educate people about this when it comes up, both because I would like people to understand that everyone has their own perspective on a 'disabled' life (personally I care a lot about being physically excluded because I can't get accommodations, poverty, and unemployability u_u), and because I would also like to tell people that they are stronger than they know and it will probably show up when they are tested one day.
We all have experiences we think we could never endure, and they're often as awful as we thought, but what we don't anticipate is that it's worth enduring them and we can never really say the extent of something's effect on us without going through it as our own self.
In the interests of making a positive contribution to the thread, I would like to provide some suggestions for everyone dealing with deaf, Deaf, and hard-of-hearing (HOH) people, since we are everywhere, and a little perspective on what it can be like! I put it under a hide tag because this post is very long and this could be a long post by itself (it took me so long to write you have no idea .-. but I am very passionate about this and would view it as remiss if I didn't do my best to talk, even if I'm not making sense).
* disability affects everyone differently. Many people who have hearing 'issues' don't even consider themselves disabled or it to be a negative thing, just part of how they experience the world, just want to be accommodated
* One of the things that hurts the worst about an acquired hearing loss or deafness in situations where you are around hearing people is being excluded unintentionally. There are actually pamphlets specifically about the mental health effects of being hard of hearing at my local hospital! When you're in a group situation, somewhere noisy, or in some sort of scenario that impedes hearing (family gatherings are a huge one), it is very very convenient to leave the hard of hearing person out of the conversation. It's never meant maliciously, but it's done generally out of forgetfulness or impatience that honestly feels a little like being left behind. sometimes people won't repeat things, sometimes people won't stop to include a person, sometimes people will sit the deaf person at the end of the table intentionally but just out of sheer ignorance and negligence, sometimes people won't explain things to you and dont really know why its bad. the thing is its very different from before in a way you perceive more than anyone. it's easy to forget, just note it when you get reminded and you will form a habit of adjusting.
(like I often ask my mother to explain what's going on in a conversation so I'm not sitting there listening to empty buzzing and she won't because she can't be bothered and it hurts that everyone is fine with my silence now because I can't hear and there were many arguments at first about being excluded in family situations. her perspective is, I wasn't in the conversation so why do I need to know, but my perspective is, once I wouldve been able to hear you fine since you're next to me and choose myself whether I wanted to attempt to get involved in the conversation, and me asking you what's going on is me attempting to get involved in the conversation except I have to do it different 'cause I can't hear. I think this anecdote can be extrapolated very well to understanding how people with disabilities generally want to be treated in the case of a new disability btw)
* being partially hearing can lead to a lot of embarrassing or awkward situations because your hearing correctly will be assumed. literally everyone should have had one of these experiences, but imagine these happening to you on a constant basis, especially if you socialise. Basically just try to empathise and understand their personal context.
* not hearing somebody and they thinking you're ignoring them, except this happens every day. Use visual cues like waving if calling isn't working. I personally hate being touched if I'm not hearing because it unnerves the shit out of me, I can't hear you approaching me and I'm going to get startled, on the other hand other people are more chill about it and would prefer a tap. visual cues are a safe option for someone you don't know well in nearly all situations
* dramatic mishearings (over the years I've learned to become a lot more patient because I'll hear something horrible, have to slow down and ask for a repeat, and realise I misheard something innocuous at least once every two weeks, and I had to learn to control my emotions a lot more immediately when I'm in a conversation, that doesn't come automatically for someone with acquired hearing loss). sorryyy
* a really good way to find out if a person with bad hearing actually heard you is a) directly communicate it to them rather than assuming they overheard b) ask them a question that can't just be answered with 'yes' or 'no' ('you get that' is a nightmare of a question 'cause probably if I don't say 'yes' with 100% certainty no I didn't lol, or I'll need it repeated to know I did, which is not fun in, say, a chemistry lab). if they answer something off you can easily rat out a mishearing. a lot of these are good general 'dealing with noisy/crowded area/confusing technical stuff' workplace skills btw
* straining to hear all day with hearing aids or partial hearing loss can be really exhausting and a huge social drain on people that you might not notice happening, it's like anyone else, sometimes quiet socialisation and conversation is nice, but nobody wants to be excluded from every activity. If the person can gain something from an event just say you thought they might like to hang out, it's up to them to indicate whether they don't want to go to those types of activities. because hearing is so variable, especially over life, it's difficult to explain the variety of ways people who are fully deaf experience things like music, concerts, films, etc. that might seem alien to a hearing person. see if you can get hearing aid equipped places at cinemas and stuff if they use hearing aid facilities in class or whatever, I don't know, that's just like any other social situation, you don't have to treat it like a huge taboo unless it deeply upsets the other person, negotiate each other's needs and everyone will be happier :)
* speaking of straining to hear: a lot of people have some leftover hearing or tinnitus can be aggravated by a lot of noise etc. so it's not cool to just assume a deaf person can't hear the kind of noise pollution that would piss anyone else off unless they indicated. also if they have leftover hearing noise pollution is even worse for us because it is a massive interference for hearing aids, something that's always good to know.
* not knowing how loud or quiet is okay to speak, especially at first, its probably an accident and we probably know, that being said if I can't be heard because I'm talking too quietly I'd rather my conversational partner ask me 'hey speak up a little yo' than just ignore it diplomatically and end up not hearing a word I say!
* having trouble introducing yourself to people, because you might have some kind of environmental factor that impedes your hearing. You feel bad or uncomfortable being like 'Hi I'm __ and I'm deaf as fuck, can you please stand to my left or else I won't hear a word you say?' and reminding people to do it. It's not easy to remember to adjust around someone you don't know well to speaking to them but practice makes perfect.
* don't do the thing where you speak really slowly to people that can't hear well unless they ask for it, indicate in some way its needed, whatever. It comes across as super patronising and condescending, and makes your hearing problems ultra conspicuous. Furthermore if the preson is lipreading and you're not moving your mouth in an ordinary way to form sounds they're not going to understand you. So don't exaggrate and overenunciate. Do try to speak a little more clearly, if they're lipreading keep a relatively even tone and keep your face and mouth unobscured. Speaking of which, sometimes I come off as slow because I'm trying to reparse what I heard and understand and I hate that, I get patronised a lot, give me a second to hear you
* you're gonna be asked to be repeated, sorry, I personally hate repeating myself with a passion but I became a lot more tolerant of it when every second word out of my word was 'what?'. often I just missed a few words and will stop you when needed. If your first repeat doesn't work, try to avoid going nuclear and reword any words that might be a little hard to understand. 'never mind' feels so bad if it's unnecessary, yes I know it's extra effort to include me but you know... I would like to know myself if it was important or I can react to it
* something I've found out a lot of people don't know: people who are born deaf and raised in Deaf (capital d) culture may not have the local language(s) as a native tongue and may not be as fluent as you expect, including in writing. sign languages are very, very, very different from fingerspelling and written communication, and if you're born deaf, especially in a deaf family or being communicated to with sign language a lot, you're going to pick that up faster than a language you won't hear when you're small. otoh doesn't apply for everyone, a lot of born deaf kids have plenty of exposure to English early on, but it's just something to consider if you're dealing with someone who speaks sign language most of the time and you're wondering why their English might be off, maybe they don't have as much experience using it as you or their educational and formative experiences were not in that language, so they speak it as an acquired language (that is structured very differently to many sign languages). literacy varies for everyone anyway.
* if you're unsure how to handle someone deaf or HOH you'd like to include in your friend group, just ask them about shit (online or whatever if you prefer), but honestly just having them around a bit might help you both adjust to each other.
* something that can be confusing is environmental hearing impairment! this is just basically where your hearing loss is aggravated by situational factors. this is usually noise, but for me it's where someone is standing when they talk to me (I have a good ear and a bad ear and I can go from not hearing a single thing to hearing you perfectly fully baesd on angle), hearing aids, speech type, conversation type (amount of words understood very obviously increases with amount of words known and frequently used), things that are distracting, etc. its the same for you but you probably have more control over these factors. I do the 'pretend I'm one of those "deaf-mutes"' thing every now and then but in reality if I go from hearing you fine one day to not the next day uh thats just sorta how it is, and it might seem weird and give you difficulty in adjusting but its real!
* sorry if I didn't hear your name or I thought I did and called you something similar sounding but wrong, I promise I'm trying to get it right, asking name again etiquette is awkward like you wouldn't believe when you can't hear and most people, including the hearing, who fuck up names with new people would be grateful to know if they did. it being due to a hearing impairment doesn't change shit in how you address it, unless you're sensitive about it (and I get this like you wouldnt know due to a weird name, so just providing a thought !)
there are a lot of little things like this that are just day to day experiences for deaf/hoh people and I didn't encompass 1/30592309 of them and they come up all the time but I think those ones might be useful for people to know. If you want to know something feel free to ask me questions anytime but keep in mind I don't wear hearing aids or have an implant
COOL PROACTIVE THINGS YOU CAN DO FOR YOUR DEAF LOVED ONES that would make my life rule if just my mother and brother, who talk to me on the regular, did them naturally:
* eye contact and other forms of body language are nice visual cues that help when I can't understand a situation or if something's directed at me. I have severe social anxiety so I totally understand but I'm just saying this is a nice way to include anyone if you're up to eye contact
* if you're hanging out with someone deaf, try to let them pick where you sit etc. they will probably pick a better place for them to hear than you (or see if they need to lipread). Includes seating and stuff.
* try to keep a clear flow of conversation that a) includes the person in question via body language b) doesn't involve everyone interrupting each other. This sounds really nitpicky but when you hear people fully you can hear a lot of subtle things that indicate a person is done speaking, like they breathe different, they might use a different tone of voice (upspeak etc.) to indicate end of sentence, etc. and you also get to react faster.
* don't assume directional hearing. a routine conversation in my house is 'mom where are you' 'here' 'where's "here"' 'here' meanwhile I've tilted my head 360 degrees and no clue because she's in another room and I'm searching the entire house. IT SOUNDS REALLY FUNNY but its really not by about the fiftieth time :(
* if you have someone with acquired hearing loss around continue to talk to them and you will figure out a good way to talk to them like before probs. just at first you might have to be a bit more proactive in interlocuting to explain what's going on or including them where they normally would've had something to say or know something. what I'm going to suggest is better for a person who is more timid and will just say 'I didn't hear sorry' rather than interrupt the flow of conversation. specify context! i.e. sometimes if you're not sure replacing relative words like 'that' 'this' 'there' that you would usually use to indicate objects and subjects of a sentence with the actual thing that was said. you dont have to repeat an entire sentence every time but here is an example: you're having a very fun and cordial conversation with your relatives about immigration and 'what do you think [about that]' becomes 'what do you reckon about mass deportation then' and then you elaborate if necessary. for other people just talking like 'usual' and saying 'oh what about that then' and getting a 'what about what?' and answering properly works perfectly.
honestly if I don't want anyone to interlocute an inane conversation I will say LEAAAVE MEEE OUUUT OF IT :))))) thank them but say nothanks or just put on music depending on what is going on. (i have a dysfunctional household)
a really nice and cool experience for me was going to a music festival with my brother and his friend. now literally nobody can hear at music festivals during the concert but I couldn't hear outside of them very well either because there were people running around crossfaded everywhere and it was crowded. my brother and I talk via text almost exclusively anyway so what we just did was if I indicated I couldn't hear and talking wasn't working, we texted our thoughts and what we were going to do, and since I didn't know my brother's friend at all, if my brother wanted to include me in on something he just showed me his phone so I saw good jokes etc. my brother could've been a dick and just gone off with his friend instead of hanging out with his loser older sibling but but he made an active effort to include me and respond to my excited texting and that was one of the best days of my life.
Sorry that I came across as insensitive or degrading. I could never know what it must be like to be deaf unless it happened to me, and I didn't mean to say view it so much as the kind of disability that my post may have come across; I'm not the kind of person to usually come across as pitying (which, now that I re-read my post, I did inadvertently come across as in my post) due to being a minor sociopath, and it is kinda pathetic that I have in that post of all places tbh. I kinda make assumptions about what I'd do if I were to lose a key part of who I am (ask anyone who knows me and they would all probably say that losing my sense of sound is one of the few things that could break me as a person), but really I understand that it probably isn't how I imagine it to be. If I were told that I'd be deaf tomorrow, I'd probably realise exactly what you are saying in your post. I've been luckier than most with lots of aspects of my genes+environment (no eyesight/hearing problems from birth, high metabolism, unusually strong immune system, never suffered any form of major loss besides my great grandparent etc.), and this in combination with slightly sociopathic tendencies means that I have lots of difficulty empathising in situations like this and don't realise when I'm being insensitive/patronising/ignorant etc. I don't feel scolded, as your post was the kind of thing that I need to see as replies to stuff like this (I thank you dearly, and I have more respect for you RN than I think I've ever had for anyone), and having skimmed the post I'm getting ready to re-read and thoroughly digest it all to try and improve my posting in threads like this in the future. Like you said, education about this kind of thing is better than ignoring it and not informing people of any unintentional disrespect, so I am thankful for you making it so detailed and separating out the key issues for me to work on.
Yeah, sorry if I offended you. I'm sorry you have to go through so much. That must really suck. I hope I didn't offend you, and thanks for staying civil.
Thanks for the advice and thanks for sharing your experiences with me. I always love to hear about stories deaf or HoH people have. I hope your health Insurance covers hearing aids sometime soon.
