Hard-of-Hearing Culture?
December 8, 2012 12:25 AM Subscribe
The dividing line between being deaf and hard-of-hearing is naturally somewhat fuzzy to most people: the paper "Personal and Social Identity of Hard of Hearing People" by Mark Ross argues that the distinction should be made on the basis of whether the person in question "developed their linguistic skills primarily through the auditory channel, and if they are capable of comprehending verbal messages through listening alone." Yet, this definition brings up new questions: while the role of Deaf culture is well understood as a factor in the development of a social identity in those growing up deaf, is there a similar phenomenon of "hard-of-hearing culture"? And how do those growing up hard-of-hearing develop a social identity?
As Shanna Groves proposes in her blog "Lip Reader", hard-of-hearing "culture" is characterized by the use of spoken language as opposed to signed language as a communication style, and a strong reliance on technology. These cultural preferences can in large part be related to the overwhelming preference for mainstreaming especially in the case of the hard-of-hearing, a movement that has roots back to Alexander Graham Bell (yes, that Bell), often viewed negatively for this reason by the Deaf community.
While from a cost-based and an educational perspective, there are significant advantages to the child, family and society in using spoken language to mainstream and from the perspective of many parents, avoids isolating the child from general society (rebutted in the Isolation Myth), mainstreaming unfortunately puts hard-of-hearing children at risk of bullying, social isolation and negative stigma leading to higher incidences of risky behaviour, which ultimately correlates to a lower level of educational and vocational achievement, and a higher prevalence of mental illness. (A summary of the issues and how they are often at odds can be found here.)
Going back to the first link, Ross brings up a number of reasons why mainstream education is often not sufficient in providing hard-of-hearing children/young adults with experiences in reconciling their disability with their social identity. Consequentially, many are forced to struggle to fit into the grain of the hearing world: bluffing is a strategy that the hard-of-hearing almost universially come up with. Desire for increased integration into the hearing world also explains hard-of-hearing reliance on technology as Groves brought up, with cochlear implant acceptance being inversely related to integration into Deaf Culture.
The alternative that others come upon is to integrate into the Deaf community. Karen, in her blog "A Deaf Mom Shares her World", explains her experiences of doing so. Unfortunately, oralism can be a sensitive topic in the Deaf community, posing a barrier to those seeking to join the Deaf community (frequentally discussed at alldeaf.com, including here.)
Unfortunately, no real middle ground seems to exist yet. Laszlo, in his paper "Is there a Hard of Hearing Identity" explains the barriers and issues preventing the hard-of-hearing from following the model of the Deaf. Ross similarly notes that there have been many tried and failed attempts in establishing these organizations.
(This is my first stab at a FPP. Please me,ail me with comments as to if I did it right or not! My goal was to supplement the primary paper with informational background.)
As Shanna Groves proposes in her blog "Lip Reader", hard-of-hearing "culture" is characterized by the use of spoken language as opposed to signed language as a communication style, and a strong reliance on technology. These cultural preferences can in large part be related to the overwhelming preference for mainstreaming especially in the case of the hard-of-hearing, a movement that has roots back to Alexander Graham Bell (yes, that Bell), often viewed negatively for this reason by the Deaf community.
While from a cost-based and an educational perspective, there are significant advantages to the child, family and society in using spoken language to mainstream and from the perspective of many parents, avoids isolating the child from general society (rebutted in the Isolation Myth), mainstreaming unfortunately puts hard-of-hearing children at risk of bullying, social isolation and negative stigma leading to higher incidences of risky behaviour, which ultimately correlates to a lower level of educational and vocational achievement, and a higher prevalence of mental illness. (A summary of the issues and how they are often at odds can be found here.)
Going back to the first link, Ross brings up a number of reasons why mainstream education is often not sufficient in providing hard-of-hearing children/young adults with experiences in reconciling their disability with their social identity. Consequentially, many are forced to struggle to fit into the grain of the hearing world: bluffing is a strategy that the hard-of-hearing almost universially come up with. Desire for increased integration into the hearing world also explains hard-of-hearing reliance on technology as Groves brought up, with cochlear implant acceptance being inversely related to integration into Deaf Culture.
The alternative that others come upon is to integrate into the Deaf community. Karen, in her blog "A Deaf Mom Shares her World", explains her experiences of doing so. Unfortunately, oralism can be a sensitive topic in the Deaf community, posing a barrier to those seeking to join the Deaf community (frequentally discussed at alldeaf.com, including here.)
Unfortunately, no real middle ground seems to exist yet. Laszlo, in his paper "Is there a Hard of Hearing Identity" explains the barriers and issues preventing the hard-of-hearing from following the model of the Deaf. Ross similarly notes that there have been many tried and failed attempts in establishing these organizations.
(This is my first stab at a FPP. Please me,ail me with comments as to if I did it right or not! My goal was to supplement the primary paper with informational background.)
Deaf if they "developed their linguistic skills primarily through the auditory channel, and if they are capable of comprehending verbal messages through listening alone" seems very very problematic with some cases. While it does bring up the discussion of cochlear implants, there is something even bigger going on here.
My brother, for example, could hear at birth, and in fact could up through half way through his second year. Before he turned two, however, he had a severe case of meningitis that left him functionally deaf in one ear, and completely deaf in the other, along with costing him the use of one of his arms. But, because he still had some hearing in one ear, he used a hearing aid until he was approved for his implant and had it installed. My brother does nearly all of his linguistic processing verbally, and can even use an iPhone thanks to a nifty adapter he has. He's never been completely without sound for an extended period, and all of his language acquisition was through sound. Is he deaf? Yes, unquestioningly.
On the other hand, I'd not want to force medical treatment on an adult that wasn't going to both extend and significantly improve their quality of life for a very long period of time. But that is no reason there should be a differentiation between the "hearing" and unhearing deaf worlds. This would be like saying there is a "culture" of those born without feet who don't use prosthetics or aids by choice.
posted by strixus at 1:08 AM on December 8, 2012
My brother, for example, could hear at birth, and in fact could up through half way through his second year. Before he turned two, however, he had a severe case of meningitis that left him functionally deaf in one ear, and completely deaf in the other, along with costing him the use of one of his arms. But, because he still had some hearing in one ear, he used a hearing aid until he was approved for his implant and had it installed. My brother does nearly all of his linguistic processing verbally, and can even use an iPhone thanks to a nifty adapter he has. He's never been completely without sound for an extended period, and all of his language acquisition was through sound. Is he deaf? Yes, unquestioningly.
On the other hand, I'd not want to force medical treatment on an adult that wasn't going to both extend and significantly improve their quality of life for a very long period of time. But that is no reason there should be a differentiation between the "hearing" and unhearing deaf worlds. This would be like saying there is a "culture" of those born without feet who don't use prosthetics or aids by choice.
posted by strixus at 1:08 AM on December 8, 2012
This would be like saying there is a "culture" of those born without feet who don't use prosthetics or aids by choice.
Except being born without feet doesn't affect the way one uses and processes language, whereas deafness does. Since language and communication are so vital to the way cultures and communities form, it makes sense that those who share that common experience would bond in ways that wouldn't happen for someone whose communication is based on hearing.
posted by louche mustachio at 1:30 AM on December 8, 2012 [6 favorites]
Except being born without feet doesn't affect the way one uses and processes language, whereas deafness does. Since language and communication are so vital to the way cultures and communities form, it makes sense that those who share that common experience would bond in ways that wouldn't happen for someone whose communication is based on hearing.
posted by louche mustachio at 1:30 AM on December 8, 2012 [6 favorites]
The question, however, strixus, is not whether your brother is "deaf", but rather if he's "Deaf" - the people who argue against cochlear implants speak from the "Deaf" perspective and not the "deaf" perspective, that is, they speak from a social view of disability versus a medical view (I explained the distinction in a post earlier this week here.) It's obviously he does have some degree of hearing loss, as you state, but this is not necessarily correlated to his participation within the Deaf community.
Also, Deaf Culture is very much a culture, and this is not up for debate at all - the UN even officially recognizes and sanctions it as such, and Deaf Culture fulfills all sociological/anthropological definitions of culture in almost any model as well. To imply otherwise is very offensive to the Deaf community. I also feel that the argument against cochlear implants from the Deaf community definitely does have some merit: turn-over in the Deaf community tends to be very high from generation to generation as genetic links are fairly weak (I think it's a 90% chance that a deaf person is born to hearing parents), and cochlear implants promote oralism (after all, the primary reason you are getting the cochlear implant is to promote acquisition of spoken language), which in turn prevents the deaf person from gaining the language skills necessary to integrate into the community if they choose to do so.
Thus, the ethical issue behind cochlear implants is that in a large portion of cases, they are chosen by the parents from birth. In other words, the parent chooses the child's path from birth without permission/consent from the child. The argument for is that if they do not do so at an early age, language acquisition suffers, but the argument against is that it forces the child into oralism, which is only one model of many. As I attempt to demonstrate with the links provided above, integrating a hard-of-hearing/deaf child into the hearing world is less clear-cut than you would think, especially when you can consider that no degree of technology can compensate fully for a hearing loss at this point. The Deaf model, with all of its flaws, has one major and (in a lot of cases) overwhelming advantage over integrating a child into the hearing world - it provides community, role models, socialization, and emotional support.
The unfortunate part of the equation is that the vast majority of hearing parents with deaf children are not informed of the alternatives because of the heavily medicalized nature of hearing loss these days. But many young adults with a hearing loss ultimately do decide that they would prefer to integrate into the Deaf community because of how poorly the hearing community treats them in terms of emotional and social support, discrimination and ignorance. I can't speak for every parent, but I know when my mother realized this upon my decision to stop using my hearing aids at 17, she was extremely distressed at how her decisions had led me to a primary and high school life of almost complete social isolation, stunted social development, no friends, no role models, depression, etc. - but she realized that she couldn't have helped it any way because the only model the doctors had ever presented her with was oralism and technological accommodations.
So speaking from a personal viewpoint, I feel that the current medical community does not do a good enough job of looking out for BOTH sides of a child's development - not just linguistic and educational development, but also social and emotional development. Frustratingly, the two models are not mutually exclusive, and it is possible for deaf/hard-of-hearing to benefit from both sides of the picture, so I really do not understand why the focus is only on the medical model.
posted by Conspire at 1:41 AM on December 8, 2012 [12 favorites]
Also, Deaf Culture is very much a culture, and this is not up for debate at all - the UN even officially recognizes and sanctions it as such, and Deaf Culture fulfills all sociological/anthropological definitions of culture in almost any model as well. To imply otherwise is very offensive to the Deaf community. I also feel that the argument against cochlear implants from the Deaf community definitely does have some merit: turn-over in the Deaf community tends to be very high from generation to generation as genetic links are fairly weak (I think it's a 90% chance that a deaf person is born to hearing parents), and cochlear implants promote oralism (after all, the primary reason you are getting the cochlear implant is to promote acquisition of spoken language), which in turn prevents the deaf person from gaining the language skills necessary to integrate into the community if they choose to do so.
Thus, the ethical issue behind cochlear implants is that in a large portion of cases, they are chosen by the parents from birth. In other words, the parent chooses the child's path from birth without permission/consent from the child. The argument for is that if they do not do so at an early age, language acquisition suffers, but the argument against is that it forces the child into oralism, which is only one model of many. As I attempt to demonstrate with the links provided above, integrating a hard-of-hearing/deaf child into the hearing world is less clear-cut than you would think, especially when you can consider that no degree of technology can compensate fully for a hearing loss at this point. The Deaf model, with all of its flaws, has one major and (in a lot of cases) overwhelming advantage over integrating a child into the hearing world - it provides community, role models, socialization, and emotional support.
The unfortunate part of the equation is that the vast majority of hearing parents with deaf children are not informed of the alternatives because of the heavily medicalized nature of hearing loss these days. But many young adults with a hearing loss ultimately do decide that they would prefer to integrate into the Deaf community because of how poorly the hearing community treats them in terms of emotional and social support, discrimination and ignorance. I can't speak for every parent, but I know when my mother realized this upon my decision to stop using my hearing aids at 17, she was extremely distressed at how her decisions had led me to a primary and high school life of almost complete social isolation, stunted social development, no friends, no role models, depression, etc. - but she realized that she couldn't have helped it any way because the only model the doctors had ever presented her with was oralism and technological accommodations.
So speaking from a personal viewpoint, I feel that the current medical community does not do a good enough job of looking out for BOTH sides of a child's development - not just linguistic and educational development, but also social and emotional development. Frustratingly, the two models are not mutually exclusive, and it is possible for deaf/hard-of-hearing to benefit from both sides of the picture, so I really do not understand why the focus is only on the medical model.
posted by Conspire at 1:41 AM on December 8, 2012 [12 favorites]
Can we agree that even if we leave aside issues of offence, to imply that Deaf Culture is not a culture is just factually incorrect? Hopefully that will be acceptable to everyone. Sign language is a distinct and complete language group (not a language, because different countries have their own versions, and I gather that you can have different regional accents as well), and any group of people that has their own distinct language and spends time together is going to develop their own culture. A culture whose members may, to a greater or lesser extent depending on the individual, interact with the culture that surrounds them, but that doesn't mean the culture isn't a real thing.
It's a fascinating subject. I feel like I have little to add because I'm entirely of hearing culture, but it's a great chance to educate myself, so thank you for this. If for no other reason, than because it's always possible I might have a deaf child, and whatever choices I took about that would have tremendous consequences.
posted by Kit W at 2:21 AM on December 8, 2012 [2 favorites]
It's a fascinating subject. I feel like I have little to add because I'm entirely of hearing culture, but it's a great chance to educate myself, so thank you for this. If for no other reason, than because it's always possible I might have a deaf child, and whatever choices I took about that would have tremendous consequences.
posted by Kit W at 2:21 AM on December 8, 2012 [2 favorites]
Just for the record, my post about leaving aside issues of offence was in response to another post that has since been deleted, NOT because I was condemning Conspire for bringing up the subject.
posted by Kit W at 2:25 AM on December 8, 2012
posted by Kit W at 2:25 AM on December 8, 2012
That was my intent, Kit W, and I apologize if it sounded like I was stifling the debate. My point in stating that to deny the culture was offensive was because the issue of offense IS indeed factual in itself - Deaf Culture arose from a very long history of persecution, where the deaf were forcibly placed in residential schools, denied of their language, and were even made subject to eugenic practices. To say Deaf Culture doesn't exist also disparages this long history of discrimination, and indeed, it is a struggle of the Deaf community to gain recognition for this history - and a primary reason why many Deaf people reject oralism.
That being said, while I can't possibly see how one can deny Deafness as a culture from my personal background, I'm perfectly willing to hear out (haha, see what I did there) any debate and/or alternative viewpoints anyone else may have to present.
posted by Conspire at 2:30 AM on December 8, 2012 [1 favorite]
That being said, while I can't possibly see how one can deny Deafness as a culture from my personal background, I'm perfectly willing to hear out (haha, see what I did there) any debate and/or alternative viewpoints anyone else may have to present.
posted by Conspire at 2:30 AM on December 8, 2012 [1 favorite]
By the way - here's an excellent resource if anyone wants to read up on the point of historical discrimination that I brought up the above comment.
posted by Conspire at 2:33 AM on December 8, 2012
posted by Conspire at 2:33 AM on December 8, 2012
The "bluffing" link goes to a PDF that does not include that word.
posted by Kirth Gerson at 2:46 AM on December 8, 2012
posted by Kirth Gerson at 2:46 AM on December 8, 2012
Oops. I must have gotten them mixed up.
Here's the real link:
http://www.handsandvoices.org/articles/SocEmot/V9-4_bluff.htm
Can a moderator fix that for me if possible?
posted by Conspire at 2:48 AM on December 8, 2012
Here's the real link:
http://www.handsandvoices.org/articles/SocEmot/V9-4_bluff.htm
Can a moderator fix that for me if possible?
posted by Conspire at 2:48 AM on December 8, 2012
Mod note: Fixed the link. (Helpful to flag your request-to-fix comment as "html/display error" to make sure we notice.)
posted by taz (staff) at 3:08 AM on December 8, 2012
posted by taz (staff) at 3:08 AM on December 8, 2012
To me, Hard-of-Hearing connotes someone who lost their hearing post-linguistically, usually later in life. I have a severe-to-profound hearing loss in both ears, found pre-linguistically. I call myself deaf (with a lower case 'd', since using the uppercase in Deaf indicates participation in Deaf culture). Even so, the Hard-Of-Hearing cultural concept outlined in the third link of the FPP mostly cues up with my life experience.
I was raised without sign language and taught how to speak. I got a cochlear implant at seven. I went to an oral deaf school between third and eighth grade. My family is hearing. Most of my d/Deaf friends use oral communication with me, since my sign is not up to par.I will always consider myself deaf. I have little in common with people who lose their hearing later in life, after years of participation in the hearing world, and I've had some moments of conflict with them.
I've never, though, considered myself isolated from the Deaf world-- even though the hearing world alienates me at least once a month. D/deaf people have commonalities in their experiences in working and living within a larger society that's hearing. My chosen mode of communication, speaking, just lets me flies under the radar a little longer before people start judging me on "how good of an disabled person" I am and "how inspirationally disabled" I am. When *those* attitudes come out, I share the same frustration and annoyance that my Deaf brethren do.
Deaf culture simply attracts the most attention for having the guts to state there is nothing wrong with having hearing loss, and that it is more than just possible to have a rich life-- it *is* reality. For me, who deals with the background radiation of a society that devalues me and thinks me lesser for not being able-bodied, d/Deaf culture is a touchstone.
posted by lineofsight at 6:07 AM on December 8, 2012 [3 favorites]
I was raised without sign language and taught how to speak. I got a cochlear implant at seven. I went to an oral deaf school between third and eighth grade. My family is hearing. Most of my d/Deaf friends use oral communication with me, since my sign is not up to par.I will always consider myself deaf. I have little in common with people who lose their hearing later in life, after years of participation in the hearing world, and I've had some moments of conflict with them.
I've never, though, considered myself isolated from the Deaf world-- even though the hearing world alienates me at least once a month. D/deaf people have commonalities in their experiences in working and living within a larger society that's hearing. My chosen mode of communication, speaking, just lets me flies under the radar a little longer before people start judging me on "how good of an disabled person" I am and "how inspirationally disabled" I am. When *those* attitudes come out, I share the same frustration and annoyance that my Deaf brethren do.
Deaf culture simply attracts the most attention for having the guts to state there is nothing wrong with having hearing loss, and that it is more than just possible to have a rich life-- it *is* reality. For me, who deals with the background radiation of a society that devalues me and thinks me lesser for not being able-bodied, d/Deaf culture is a touchstone.
posted by lineofsight at 6:07 AM on December 8, 2012 [3 favorites]
One of the more painful parts of the excellent documentary See What I'm Saying was the segments with TL Forsberg, a singer who is hard of hearing but not deaf, and who feels she constantly struggles with not being accepted in either world. The line she has to walk between being too deaf and not deaf enough seems like a really difficult one, and the obstacles she confronts at many points along her path would make a lesser person just throw up her hands and walk away.
posted by hippybear at 7:34 AM on December 8, 2012
posted by hippybear at 7:34 AM on December 8, 2012
This is a great first post.
I am deaf but not Deaf. The bones in my middle ear are fused due to a rare congenital syndrome (which also affects other aspects of my anatomy). I've worn hearing aids since age five and I was taught to lip read. I needed lots of speech therapy since I had a deaf "accent." I was in a mainstream school and was never taught to sign. I was bullied (for unrelated reasons) and always, always felt different.
The isolation is profound and difficult for others to understand. Even with hearing aids in both ears, I miss about 50-75% of group conversation. People are laughing and I don't know why. People think I'm aloof or shy or passive or disingenuous (see the article on bluffing). People get impatient with trying to communicate. I've been encouraged a million times to get out there! Go socialize! Don't be a wallflower! Certainly some of it is just garden-variety social anxiety, but it's mainly fueled by my inability to hear.
The internet has been a lifeline for me, and I know I'd be really lonely without it. I met my (hearing) husband through online personals because approaching someone in person (or being approached) was very difficult. I've made some IRL friends through mefi and twitter, and I've been to several meetups, but they've occasionally been frustrating and lonely too even though the people are cool. (Except one gentleman who is also HoH. We text back and forth instead of trying to yell across the table.)
I wouldn't say my hearing is part of my identity per se, and certainly not my cultural identity. I never learned sign language and don't even know any Deaf folks IRL. However, I'm very heartened to learn of Deaf/HoH activism (shoutout to NAD's lawsuit that forced Netflix to captoin their content) and I'm frequently on my captioning soapbox. Captioning is essential to those who are deaf but not Deaf. I am completely shut out of most online videos that contain dialog without captions (probably why I watch a lot of cat videos). Most people will lose a significant portion of their hearing if they live long enough, so it's in everyone's best interest to make media accessible.
/soapbox
Again, thanks for the great post. I'm always heartened to know that there are people who really get this aspect of me.
posted by desjardins at 2:19 PM on December 8, 2012 [3 favorites]
I am deaf but not Deaf. The bones in my middle ear are fused due to a rare congenital syndrome (which also affects other aspects of my anatomy). I've worn hearing aids since age five and I was taught to lip read. I needed lots of speech therapy since I had a deaf "accent." I was in a mainstream school and was never taught to sign. I was bullied (for unrelated reasons) and always, always felt different.
The isolation is profound and difficult for others to understand. Even with hearing aids in both ears, I miss about 50-75% of group conversation. People are laughing and I don't know why. People think I'm aloof or shy or passive or disingenuous (see the article on bluffing). People get impatient with trying to communicate. I've been encouraged a million times to get out there! Go socialize! Don't be a wallflower! Certainly some of it is just garden-variety social anxiety, but it's mainly fueled by my inability to hear.
The internet has been a lifeline for me, and I know I'd be really lonely without it. I met my (hearing) husband through online personals because approaching someone in person (or being approached) was very difficult. I've made some IRL friends through mefi and twitter, and I've been to several meetups, but they've occasionally been frustrating and lonely too even though the people are cool. (Except one gentleman who is also HoH. We text back and forth instead of trying to yell across the table.)
I wouldn't say my hearing is part of my identity per se, and certainly not my cultural identity. I never learned sign language and don't even know any Deaf folks IRL. However, I'm very heartened to learn of Deaf/HoH activism (shoutout to NAD's lawsuit that forced Netflix to captoin their content) and I'm frequently on my captioning soapbox. Captioning is essential to those who are deaf but not Deaf. I am completely shut out of most online videos that contain dialog without captions (probably why I watch a lot of cat videos). Most people will lose a significant portion of their hearing if they live long enough, so it's in everyone's best interest to make media accessible.
/soapbox
Again, thanks for the great post. I'm always heartened to know that there are people who really get this aspect of me.
posted by desjardins at 2:19 PM on December 8, 2012 [3 favorites]
(Side note about Netflix: They haven't gotten around to captioning the streaming version of the PBS documentary Through Deaf Eyes, which is hilarious considering the intended audience.)
posted by desjardins at 2:24 PM on December 8, 2012 [1 favorite]
posted by desjardins at 2:24 PM on December 8, 2012 [1 favorite]
Some really interesting stuff here, having read through some of the links. I am hard of hearing since birth. I sometimes refer to myself as 'deaf' but usually this is more of a hyperbole, knowing that my experience is very different from Deaf, but still very different from those with full hearing. Sometimes saying "hard of hearing" seems to minimize the severity of the problem. People see the hearing aids and assume that they correct the problem.
I never considered myself part of a hard of hearing culture. I grew up with other hard of hearing people in my family, but have only on a few occasions had peers with hearing difficulties. This is interesting to ask myself why I have never sought out other hard of hearing people as a community, or thought about the shared experience I might have with others. I suppose, like others have said, I don't really see it as a primary part of my identity in that way.
I am a big bluffer too. It's how I get through a good percentage of my social interactions. I find I will have to bluff through parts of a conversation, and just hope that I can piece it together using the parts I do understand. It's a source of anxiety in the workplace, because it's easy to miss important things. But I've never considered bluffing as a negative thing or a lazy thing, as the article suggests. There's simply a limit to how many times you can ask people to repeat themselves. Or you're stuck in an environment that simply can't be adjusted. Or you're just exhausted at having to listen so hard. I suppose it isn't fair to the speaker, but the only other option is to shut down the conversation, and that's even more awkward.
posted by amusebuche at 4:56 AM on December 9, 2012 [1 favorite]
I never considered myself part of a hard of hearing culture. I grew up with other hard of hearing people in my family, but have only on a few occasions had peers with hearing difficulties. This is interesting to ask myself why I have never sought out other hard of hearing people as a community, or thought about the shared experience I might have with others. I suppose, like others have said, I don't really see it as a primary part of my identity in that way.
I am a big bluffer too. It's how I get through a good percentage of my social interactions. I find I will have to bluff through parts of a conversation, and just hope that I can piece it together using the parts I do understand. It's a source of anxiety in the workplace, because it's easy to miss important things. But I've never considered bluffing as a negative thing or a lazy thing, as the article suggests. There's simply a limit to how many times you can ask people to repeat themselves. Or you're stuck in an environment that simply can't be adjusted. Or you're just exhausted at having to listen so hard. I suppose it isn't fair to the speaker, but the only other option is to shut down the conversation, and that's even more awkward.
posted by amusebuche at 4:56 AM on December 9, 2012 [1 favorite]
This is a great post. Favorited and flagged as fantastic. Thanks so much Conspire.
I'm not deaf, and don't have any family or friends who are. Have only known a few "hard of hearing" acquaintances at various times. But have always been fascinated by Deaf culture, and very interested in the debate about what decisions parents can/should make for their children, and have always thought that Deaf people aren't listened to nearly enough in this debate.
The unfortunate part of the equation is that the vast majority of hearing parents with deaf children are not informed of the alternatives because of the heavily medicalized nature of hearing loss these days. But many young adults with a hearing loss ultimately do decide that they would prefer to integrate into the Deaf community because of how poorly the hearing community treats them in terms of emotional and social support, discrimination and ignorance. I can't speak for every parent, but I know when my mother realized this upon my decision to stop using my hearing aids at 17, she was extremely distressed at how her decisions had led me to a primary and high school life of almost complete social isolation, stunted social development, no friends, no role models, depression, etc. - but she realized that she couldn't have helped it any way because the only model the doctors had ever presented her with was oralism and technological accommodations.
Does your mother know other parents with experiences and outcomes similar to hers? I really think that parents who were never able to be fully informed of their options and are now re-thinking decisions that they made years ago could be a wonderful resource for hearing parents of very young deaf or hard of hearing children. Wouldn't it be great if they could form something like P-Flag for themselves and their children and then, once mobilized, could reach out to parents who are just starting out on the journey they have already traveled?
posted by marsha56 at 10:30 AM on December 9, 2012
I'm not deaf, and don't have any family or friends who are. Have only known a few "hard of hearing" acquaintances at various times. But have always been fascinated by Deaf culture, and very interested in the debate about what decisions parents can/should make for their children, and have always thought that Deaf people aren't listened to nearly enough in this debate.
The unfortunate part of the equation is that the vast majority of hearing parents with deaf children are not informed of the alternatives because of the heavily medicalized nature of hearing loss these days. But many young adults with a hearing loss ultimately do decide that they would prefer to integrate into the Deaf community because of how poorly the hearing community treats them in terms of emotional and social support, discrimination and ignorance. I can't speak for every parent, but I know when my mother realized this upon my decision to stop using my hearing aids at 17, she was extremely distressed at how her decisions had led me to a primary and high school life of almost complete social isolation, stunted social development, no friends, no role models, depression, etc. - but she realized that she couldn't have helped it any way because the only model the doctors had ever presented her with was oralism and technological accommodations.
Does your mother know other parents with experiences and outcomes similar to hers? I really think that parents who were never able to be fully informed of their options and are now re-thinking decisions that they made years ago could be a wonderful resource for hearing parents of very young deaf or hard of hearing children. Wouldn't it be great if they could form something like P-Flag for themselves and their children and then, once mobilized, could reach out to parents who are just starting out on the journey they have already traveled?
posted by marsha56 at 10:30 AM on December 9, 2012
That's a very good point, marsha56, and I have to admit that I've never thought very deeply about the parents' experience because I largely work with the issues from a student/youth perspective.
I'm mulling it over right now, and I'm trying to think of how a proposed organization would work when compared against something like P-FLAG.
I imagine that there would be a bigger uphill battle in gaining acceptance, because the current accepted model especially in the United States and Canada is still largely the medical model of disability. We are still currently at the stage where the vast majority of medical professionals only attempt to resolve deafness from a medical perspective, and where the majority of society still views deafness as purely a disability. I can't tell you the number of times I've been attacked by even other student leaders at my university (who paint themselves as "progressive", "liberal", "inclusive", etc) for trying to propose that a culture does revolve around Deafness, and not even that, but the shared experiences and struggles of almost any group of people with disabilities (especially mental disabilities/disorders/illnesses). I fear that this climate will be very slow to change, because the fine-line is that yes, people with disabilities are disadvantaged in our society, and there are clear-cut medical paths that help reduce this disadvantage - which is in contrast to that of LGBT rights, where we can clearly see that some people are being treated as sub-human. BOTH models in disability attempt to advance the dignity of people with disabilities as a full-pledged being in society, even if one seems misinformed over the other (in my perspective). In other words, disability rights operates in an environment similar to say, P-Flag trying to stand up for LGBT rights in 19th century Europe, because the consensus view works highly against it, and is not liable to change.
Cochlear implants stand as a huge representation of this issue. If we were to take the analogy of LGBT rights further, it would be as if someone developed a method to test if a person was gay upon birth in 19th century Europe, and then a medical treatment that made them heterosexual. I imagine that if a treatment was developed that early in the development of LGBT rights, it would have squelched the development of the topic greatly, both due to a dwindling number of people within the LGBT community and a perpetuation of the medical model against LGBT rights. Obviously, this analogy is not perfect because even if the medical model of disability IS an extremely antiquated model, disability rights overall is not that uniform in development, and because the Deaf community is not that uniform either. But there are things we can take from it.
So not only would forming a united front be harder, because it's impossible to shift to the social side of the issue entirely since there are clear benefits from the medical side, I imagine that parents trying to form a said organization would be attacked in a similar way to those who decide not to vaccinate their children due to the risk of Autism. While obviously, one is a factual, well-founded decision and the other is not, there is still clear risk of harming the child by adopting a social stance over a medical stance. Plus, we still clearly see a huge deal of ignorance and backlash against those proposing that disability can serve as a positive experience.
I don't know if that's clear or not, because that's just me developing my ideas on the problems an organization standing up for the social model of disability upon birth would face as I go along. Perhaps if anyone is interested, I can do some in-depth research and consideration and make another FPP another day.
posted by Conspire at 1:21 PM on December 9, 2012 [2 favorites]
I'm mulling it over right now, and I'm trying to think of how a proposed organization would work when compared against something like P-FLAG.
I imagine that there would be a bigger uphill battle in gaining acceptance, because the current accepted model especially in the United States and Canada is still largely the medical model of disability. We are still currently at the stage where the vast majority of medical professionals only attempt to resolve deafness from a medical perspective, and where the majority of society still views deafness as purely a disability. I can't tell you the number of times I've been attacked by even other student leaders at my university (who paint themselves as "progressive", "liberal", "inclusive", etc) for trying to propose that a culture does revolve around Deafness, and not even that, but the shared experiences and struggles of almost any group of people with disabilities (especially mental disabilities/disorders/illnesses). I fear that this climate will be very slow to change, because the fine-line is that yes, people with disabilities are disadvantaged in our society, and there are clear-cut medical paths that help reduce this disadvantage - which is in contrast to that of LGBT rights, where we can clearly see that some people are being treated as sub-human. BOTH models in disability attempt to advance the dignity of people with disabilities as a full-pledged being in society, even if one seems misinformed over the other (in my perspective). In other words, disability rights operates in an environment similar to say, P-Flag trying to stand up for LGBT rights in 19th century Europe, because the consensus view works highly against it, and is not liable to change.
Cochlear implants stand as a huge representation of this issue. If we were to take the analogy of LGBT rights further, it would be as if someone developed a method to test if a person was gay upon birth in 19th century Europe, and then a medical treatment that made them heterosexual. I imagine that if a treatment was developed that early in the development of LGBT rights, it would have squelched the development of the topic greatly, both due to a dwindling number of people within the LGBT community and a perpetuation of the medical model against LGBT rights. Obviously, this analogy is not perfect because even if the medical model of disability IS an extremely antiquated model, disability rights overall is not that uniform in development, and because the Deaf community is not that uniform either. But there are things we can take from it.
So not only would forming a united front be harder, because it's impossible to shift to the social side of the issue entirely since there are clear benefits from the medical side, I imagine that parents trying to form a said organization would be attacked in a similar way to those who decide not to vaccinate their children due to the risk of Autism. While obviously, one is a factual, well-founded decision and the other is not, there is still clear risk of harming the child by adopting a social stance over a medical stance. Plus, we still clearly see a huge deal of ignorance and backlash against those proposing that disability can serve as a positive experience.
I don't know if that's clear or not, because that's just me developing my ideas on the problems an organization standing up for the social model of disability upon birth would face as I go along. Perhaps if anyone is interested, I can do some in-depth research and consideration and make another FPP another day.
posted by Conspire at 1:21 PM on December 9, 2012 [2 favorites]
Plus, we still clearly see a huge deal of ignorance and backlash against those proposing that disability can serve as a positive experience.
Quite. Media portrayals of people who are disabled show them as isolated or "heroic" for living normal lives. Whenever newspaper articles are written about people who are disabled and also happen to have accomplished something significant, the focus is on the disability. There's a lot of fear and ignorance about various types of disabilities.
The medical model has some merits, but it is very clinical and ignores social and psychological factors--which amplifies people's fears about disability.
posted by lineofsight at 2:55 PM on December 9, 2012 [1 favorite]
Quite. Media portrayals of people who are disabled show them as isolated or "heroic" for living normal lives. Whenever newspaper articles are written about people who are disabled and also happen to have accomplished something significant, the focus is on the disability. There's a lot of fear and ignorance about various types of disabilities.
The medical model has some merits, but it is very clinical and ignores social and psychological factors--which amplifies people's fears about disability.
posted by lineofsight at 2:55 PM on December 9, 2012 [1 favorite]
You are so right, lineofsight, and that annoys me to no end.
I once won a major scholarship at my university for my accessibility work, decided by a panel composed of some other science students. In the coming few weeks, a few came up to me and mentioned how inspired they were by my work in light of my disability.
I was so offended (although I didn't show it at the time since I knew they meant well), that I considered returning the award - I should have been chosen on basis of merit, not on any manner of "overcoming my disability", especially since, ironically, the work I did was trying to dispell those misconceptions in my university. In the end, though, poor student needs won out and I kept the award. I'm still a little embarrassed and saddened by it though - why should anything I do count double just because I'm deaf? Did I shunt out someone more deserving of the award because of that?
posted by Conspire at 3:07 PM on December 9, 2012 [2 favorites]
I once won a major scholarship at my university for my accessibility work, decided by a panel composed of some other science students. In the coming few weeks, a few came up to me and mentioned how inspired they were by my work in light of my disability.
I was so offended (although I didn't show it at the time since I knew they meant well), that I considered returning the award - I should have been chosen on basis of merit, not on any manner of "overcoming my disability", especially since, ironically, the work I did was trying to dispell those misconceptions in my university. In the end, though, poor student needs won out and I kept the award. I'm still a little embarrassed and saddened by it though - why should anything I do count double just because I'm deaf? Did I shunt out someone more deserving of the award because of that?
posted by Conspire at 3:07 PM on December 9, 2012 [2 favorites]
MetaFilter: You are so right, and that annoys me to no end.
posted by hippybear at 3:11 PM on December 9, 2012
posted by hippybear at 3:11 PM on December 9, 2012
I just want to crush people who are like, wow, you've overcome so much, look at you! I know they mean well, but the reason things are/were difficult is not because of my anatomical differences but because people treat/treated me differently. I don't want brownie points for… just being born the way I am. That doesn't even make sense. My closest friends have always been the ones who never saw me as disabled (or got over it really quickly).
posted by desjardins at 9:25 PM on December 9, 2012
posted by desjardins at 9:25 PM on December 9, 2012
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Well, because of the way the world is oriented. So if you're able to hear, there's a line like this:
ABLE TO HEAR -*---> HARD OF HEARING -----> DEAF
With the asterisk on that line representing "a little hard of hearing." But if you're deaf, your world is oriented different, looking like this:
DEAF -*---> HARD OF HEARING -----> ABLE TO HEAR
The asterisk still means "a little hard of hearing," but, from the perspective, it means "starting from the experience of being totally deaf, they are a little bit into the world of being hard of hearing.
This can cause a great deal of confusion when somebody is introduced as being a little hard of hearing, but either can hear a lot more or a lot less than you expect they can. However, it is a useful way to understand that for deaf people, deafness is normal, and is their starting point for understanding the world.
posted by Bunny Ultramod at 1:03 AM on December 8, 2012 [5 favorites]