It's funny, right after posting about that forwarded petition on audism (which left me brooding over the whole idea of Deaf isolation/hearing-world immersion), I got myself dressed up and headed over to a networking event on campus. It was hosted by a women's group that I'm involved with, and although I'm never quite excited to go to those things, I figured I'd resort to the old standby: suck it up, go and be seen, and try to handle it all as graciously as possible. But when I got there I quickly found that it wasn't going to be my kind of night. The room was loud and crowded, full of strangers talking in groups, many of them too difficult to lipread even if I could focus amidst the noise. The CI was more of a distraction than a help. On top of that, I was informed that there would be an assortment of activities and guest speakers for a fair deal of the time - not something I was prepared to handle at that time of night without an interpreter. A bit deflated but not exactly surprised, I left early. My night did go on to better and more useful things, but the thought racing through my mind as I walked back to my room was, No wonder it's so easy to retreat into Deaf culture.
Not that that's an option for me. It isn't, nor would I want it to be. Still, I do have my moments when it seems that the hearing world isn't at all made for me - a sentiment that I know resonates with other deaf and hard-of-hearing people. As I've gotten older, I've gotten better at maneuvering through these disconnected moments and figuring out how to avoid them. A lot of that involves advance planning (for interpreters and other accommodations), some self-advocacy, and sheer self-knowledge. The unexpected does come up, regardless, the moments in which I find myself stuck and really not able to communicate as I'd like to. And, as uncomfortable as the entire rhetoric of Deaf culture can make me, I'll be honest in admitting that during those moments it can be easy to think of groups of D/deaf people with more fondness than groups of hard-to-understand hearing people, at least in the abstract. It's easy to want to be isolationist. It's easy to be hurt and angry simultaneously at everyone and at no one in particular. It's easy to want to reject the system that seems not to care about your needs, much less provide for them. It's easy to want to band together with someone - anyone - in defiance of the linguistic and communicative barrier that accompanies hearing loss.
All of this makes sense to me in one tumultuous, emotionally chaotic moment. And then I take a deep breath, count my blessings (of which there are many!), and engage in some form of the serenity prayer. This does not define me. There are ways around the barrier, just as there have been scores of times before. And, sometimes, it just is what it is.
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Thursday, January 26, 2012
Thursday, March 24, 2011
The D-Bomb
I’m never quite sure how to drop it, or when. But I need to figure it out.
By “it,” I mean the question of telling people I meet that I'm deaf. I’m not exactly like them, I can’t do certain things, and specific accommodations need to be made for me, but I also want to be clear about the abilities that I do have and to avoid making the hearing-loss issue intimidating. It’s a quandary that, post-CI, I still struggle with. How to be clear, straightforward, approachable, fair, but yet realistic?
It’s a tricky challenge with no one-size-fits-all solution. Sometimes, at the outset of a conversation or a relationship, dropping the “d-bomb” simply isn’t necessary – or relevant. When applying for a job or internship position, no way am I going to mention it. Why should I, when it doesn’t at all affect my qualifications or my ability to perform? Starting every introduction email with the disclaimer, “By the way, before you decide how to interact with me in the future, you should know that I am deaf” – that’s not an option. It’s selling myself short. I refuse to let one aspect of my identity define my every interaction. In pursuing my real-world activities, I am a student, a reader and a writer, a hard worker, a participator, et cetera, first. I begin long-distance interactions simply as myself – which of course brings up the interesting question of how my deafness fits into this holistic sense of self-identity. (Messy question; not going there.)
However, when the time for an interview rolls around, or when I find myself about to (gulp) actually meet the individual with whom I’ve been corresponding, I need to decide what to do. In the past, I’ve tried both approaches. I’ve stayed mum about the d-word and showed up hoping that the situation won’t escalate into something unmanageable, and/or that my lipreading skills will be able to save me.
(Sometimes, that’s worked beautifully. Other times, I find myself reeling and backtracking, trying to explain away the minor snags that have suddenly turned into ogres. It depends on the person and the situation, it really does. If I bring up the deafness issue with some people, I look back afterwards and wonder why I made it such a big deal. Why, it really was irrelevant. Other people, however, need to be slammed over the head with it before I feel like I can approach a semblance of my normal ability to function.)
Or, I’ll play my cards straight before I even meet this person face-to-face. Deep breath. Time to let the cat out of the bag. I’m embarrassed every time it happens, for whatever reason. I suppose because I’ve succeeded so far in my life goal of Interacting Normally With Hearing People, and now I’m about to voluntarily set myself apart.
(Interestingly, this approach of prior disclosure is also successful, or not, depending on the person and the situation. Some people, if they’ve been given time to ruminate over “Ohmygoshshe’sdeafIdon’tknowwhattodo,” come to pieces in the actual interaction. They’re more nervous than I am, they overenunciate, they question themselves, and so the entire meeting becomes damage control on my part, trying to reassure said person back to the impression-of-hearing-person-normalcy that they had before. Other people, however, simply appreciate the heads-up. I’ve had several surprising situations arise where I’ll meet someone who unexpectedly knows some sign language or who already has deaf friends or family members – if I hadn’t mentioned my own deafness, I wouldn’t have received the gift, so to speak, of being able to interact on this level.)
The d-bomb is troublesome even in casual interactions. Sometimes I’ll be out and about and meet someone new. He or she is easy to lipread, and so we settle into a comfortable conversation without me ever bringing up my hearing loss at all. I’m enjoying myself when this new hearing companion does something that does not adhere with my version of reality, such as saying “Give me a phone call!” At that moment, of course, I have to break the mold, bring my deafness out of the closet, and say, “Whoa, hold on.” And then, of course, the situation feels awkward because I hadn’t mentioned this gee-probably-rather-important-fact before. Why? It wasn’t necessary. I was comfortable then. Honestly, I forgot.
Or, I’ll indicate to a new friend what I need in a one-on-one interaction, only to see that friend again in a group and realize that he or she really doesn’t get the big picture, doesn’t get that what works in one situation falls apart in another. Then, I’m obliged to speak up and clarify further, but too often it becomes easy to embrace a self-defeatist mindset and let things unfold as they will.
This is a problem: I tend to only mention my deafness when it becomes troublesome. Otherwise, I shove it under the carpet and ignore it. Ignoring it is something I’ve tried to do for a while, and it doesn’t work. Not only is it unfair to me, it’s unfair to the people whom I could construct valuable relationships with, if they only knew what to do. Approaching the hearing world head-on was part of my decision to get a CI, and since then I’ve gotten progressively better at being up-front. (But, but – there are situations where being up-front isn’t necessary! Where I can cope! Where lipreading is fine! Where the CI is amazing! Where I don’t feel the need to let every single person I meet know just how complicated all of this is! Like I said, all of these questions can get tricky.)
There are other questions I’m mulling over, too. For instance, what language should I use? Oftentimes “Hello, my name is Rachel and I’m deaf” doesn’t seem to work. Hearing people don’t know what to do with that word, that entire concept. They’ve often never thought about what it means. I’m as likely to get stares of shock as I am offers of accommodation. One of my deaf friends once advised me to introduce it through subtler means and action-significant words, such as “I lipread” or “I need you to look at me when you talk.” There, is that better? I’ve revealed something important about myself but also given my companion some indication of how he or she should behave. That's more productive and fair, isn't it?
Interestingly, talking about my CI fits into the entire d-bomb dilemma. “So that thing lets you hear?” people will ask me. I hesitate before giving them an answer. I want to explain that hearing isn’t the same as understanding, that it’s a beast of a process, that what I’m capable of now isn’t what I’ll be capable of in six months, or (certainly not!) what I was capable of when I first got switched on. But, for the uninitiated, hearing is a binary: either you can, or you can’t. I don’t want to contribute to misconceptions that, with my CI, I’m able to function one hundred percent normally, but I also don’t want to underemphasize the immense difference it has made in my life. So I sidestep the question a bit. I try to respond to the confused inquiries of “If you have a cochlear implant, then, doesn’t that mean you’re not deaf after all?” I try to address how lipreading and structuring my environment are still very important tools, even though, yes, I technically “can” hear at an almost-normal plane. The concept of balance between two worlds, deaf and hearing, is difficult for many people. And, in a way, the CI has only made it more complicated to explain.
In the end, it’s easy to want to give up. I find that sometimes there’s no way to be consistent about how I present myself and my deafness. But there must be a way to be consistently included, consistently understood, consistently enabled. There must be – just hold on, though, I’m working on it.
By “it,” I mean the question of telling people I meet that I'm deaf. I’m not exactly like them, I can’t do certain things, and specific accommodations need to be made for me, but I also want to be clear about the abilities that I do have and to avoid making the hearing-loss issue intimidating. It’s a quandary that, post-CI, I still struggle with. How to be clear, straightforward, approachable, fair, but yet realistic?
It’s a tricky challenge with no one-size-fits-all solution. Sometimes, at the outset of a conversation or a relationship, dropping the “d-bomb” simply isn’t necessary – or relevant. When applying for a job or internship position, no way am I going to mention it. Why should I, when it doesn’t at all affect my qualifications or my ability to perform? Starting every introduction email with the disclaimer, “By the way, before you decide how to interact with me in the future, you should know that I am deaf” – that’s not an option. It’s selling myself short. I refuse to let one aspect of my identity define my every interaction. In pursuing my real-world activities, I am a student, a reader and a writer, a hard worker, a participator, et cetera, first. I begin long-distance interactions simply as myself – which of course brings up the interesting question of how my deafness fits into this holistic sense of self-identity. (Messy question; not going there.)
However, when the time for an interview rolls around, or when I find myself about to (gulp) actually meet the individual with whom I’ve been corresponding, I need to decide what to do. In the past, I’ve tried both approaches. I’ve stayed mum about the d-word and showed up hoping that the situation won’t escalate into something unmanageable, and/or that my lipreading skills will be able to save me.
(Sometimes, that’s worked beautifully. Other times, I find myself reeling and backtracking, trying to explain away the minor snags that have suddenly turned into ogres. It depends on the person and the situation, it really does. If I bring up the deafness issue with some people, I look back afterwards and wonder why I made it such a big deal. Why, it really was irrelevant. Other people, however, need to be slammed over the head with it before I feel like I can approach a semblance of my normal ability to function.)
Or, I’ll play my cards straight before I even meet this person face-to-face. Deep breath. Time to let the cat out of the bag. I’m embarrassed every time it happens, for whatever reason. I suppose because I’ve succeeded so far in my life goal of Interacting Normally With Hearing People, and now I’m about to voluntarily set myself apart.
(Interestingly, this approach of prior disclosure is also successful, or not, depending on the person and the situation. Some people, if they’ve been given time to ruminate over “Ohmygoshshe’sdeafIdon’tknowwhattodo,” come to pieces in the actual interaction. They’re more nervous than I am, they overenunciate, they question themselves, and so the entire meeting becomes damage control on my part, trying to reassure said person back to the impression-of-hearing-person-normalcy that they had before. Other people, however, simply appreciate the heads-up. I’ve had several surprising situations arise where I’ll meet someone who unexpectedly knows some sign language or who already has deaf friends or family members – if I hadn’t mentioned my own deafness, I wouldn’t have received the gift, so to speak, of being able to interact on this level.)
The d-bomb is troublesome even in casual interactions. Sometimes I’ll be out and about and meet someone new. He or she is easy to lipread, and so we settle into a comfortable conversation without me ever bringing up my hearing loss at all. I’m enjoying myself when this new hearing companion does something that does not adhere with my version of reality, such as saying “Give me a phone call!” At that moment, of course, I have to break the mold, bring my deafness out of the closet, and say, “Whoa, hold on.” And then, of course, the situation feels awkward because I hadn’t mentioned this gee-probably-rather-important-fact before. Why? It wasn’t necessary. I was comfortable then. Honestly, I forgot.
Or, I’ll indicate to a new friend what I need in a one-on-one interaction, only to see that friend again in a group and realize that he or she really doesn’t get the big picture, doesn’t get that what works in one situation falls apart in another. Then, I’m obliged to speak up and clarify further, but too often it becomes easy to embrace a self-defeatist mindset and let things unfold as they will.
This is a problem: I tend to only mention my deafness when it becomes troublesome. Otherwise, I shove it under the carpet and ignore it. Ignoring it is something I’ve tried to do for a while, and it doesn’t work. Not only is it unfair to me, it’s unfair to the people whom I could construct valuable relationships with, if they only knew what to do. Approaching the hearing world head-on was part of my decision to get a CI, and since then I’ve gotten progressively better at being up-front. (But, but – there are situations where being up-front isn’t necessary! Where I can cope! Where lipreading is fine! Where the CI is amazing! Where I don’t feel the need to let every single person I meet know just how complicated all of this is! Like I said, all of these questions can get tricky.)
There are other questions I’m mulling over, too. For instance, what language should I use? Oftentimes “Hello, my name is Rachel and I’m deaf” doesn’t seem to work. Hearing people don’t know what to do with that word, that entire concept. They’ve often never thought about what it means. I’m as likely to get stares of shock as I am offers of accommodation. One of my deaf friends once advised me to introduce it through subtler means and action-significant words, such as “I lipread” or “I need you to look at me when you talk.” There, is that better? I’ve revealed something important about myself but also given my companion some indication of how he or she should behave. That's more productive and fair, isn't it?
Interestingly, talking about my CI fits into the entire d-bomb dilemma. “So that thing lets you hear?” people will ask me. I hesitate before giving them an answer. I want to explain that hearing isn’t the same as understanding, that it’s a beast of a process, that what I’m capable of now isn’t what I’ll be capable of in six months, or (certainly not!) what I was capable of when I first got switched on. But, for the uninitiated, hearing is a binary: either you can, or you can’t. I don’t want to contribute to misconceptions that, with my CI, I’m able to function one hundred percent normally, but I also don’t want to underemphasize the immense difference it has made in my life. So I sidestep the question a bit. I try to respond to the confused inquiries of “If you have a cochlear implant, then, doesn’t that mean you’re not deaf after all?” I try to address how lipreading and structuring my environment are still very important tools, even though, yes, I technically “can” hear at an almost-normal plane. The concept of balance between two worlds, deaf and hearing, is difficult for many people. And, in a way, the CI has only made it more complicated to explain.
In the end, it’s easy to want to give up. I find that sometimes there’s no way to be consistent about how I present myself and my deafness. But there must be a way to be consistently included, consistently understood, consistently enabled. There must be – just hold on, though, I’m working on it.
Monday, January 17, 2011
Success, Undermined
One thing that frequently bothers me is the uniqueness of my position, not only with receiving a CI at my age in my circumstances, but in doing the things that I do, as a deaf person.
I applied for a job earlier this month, and got a prompt email response praising my resume as well-qualified, with the inevitable line, "Please give me a call at xxx number so we can discuss this further." Oh, jeez. This again. Obviously I hadn't mentioned the whole deaf thing from the start; it was completely irrelevant. But obviously it had to come out now. So, taking a deep breath and feeling vaguely abashed (as I always do in such situations), I fired off a reply explaining that phone calls weren't an option for me, could we meet in person or email, et cetera. The answer I got: "How wonderful that you have gone this far in spite of being deaf." Uhhh. Yeah. Gah. And then a few evasive lines about being uncertain of whether I could manage the job because of my phone incompatability and challenges in receiving verbal feedback. Well, so much for that.
This is just one recent instance (and a pretty mild example, at that) of several things that I keep running up against. The necessity of labeling myself as deaf - which I am, yes, on one hand - even while I feel like I've morphed into some strange organism with head jumbled full of noise. Deaf, but not entirely. And not hearing either. The question of what I will be able to accomplish or do at any time in the future, and the uncertainty that accompanies such a state of flux. The assumptions that hearing people make, that everyone has the same mainstream abilities. The way I myself make these assumptions, that other people can see or run or jump or be athletic or learn quickly or eat an unhindered diet. (This bothers me. I hate assumptions, and hate that I should make them. But, in the end, aren't they necessary for collective groups to function?) Finally, the resentment that a deaf individual with my level of proficiency (in academic accomplishment, in verbal skills, in whatever) should be considered "exceptional." The perception that deafness is some sort of terrible barrier against high achievement.
Don't get me wrong, deafness can be a terrible barrier. No one knows that better than I do. But what most frequently makes it terrible, in essence, isn't the competence of the deaf individual in question - it's simply that the way the mainstream world works is incompatible with what that individual needs to thrive. Language. Accessibility. Early intervention. Visual media. Understanding. A social and therapeutic safety net. That this ideal environment doesn't exist isn't anyone's fault, not entirely. It's a problem that I don't quite know the answer to, but it bothers me constantly. Deaf people (contrary to the old moniker) aren't dumb. But I look around and don't see any of them at Stanford. I doubt there are very many at Harvard, Princeton, or Yale, either. I see very few of them in high-functioning, mainstream professions. I literally never see cochlear implants when I'm out and about. I think I'd just about do backflips if I ever glimpsed one. Growing up, I never had a deaf role model - my world was full of hearing people, and I wasn't sure what to do with myself. Many of the deaf peers that I had while growing up currently struggle in school, or hate it, or gape that I can achieve grades and acknowledgements and milestones on par with my hearing peers. In such a world, it's easy for me to forget that other accomplished deaf individuals exist.
This could be cause for me to celebrate and feel smug, but it isn't. I am reminded of how much I want a world where it's simply ordinary for deaf individuals to succeed to a high standard. It's not just that I don't want to be singled out. It's that there is no real cognitive, biological reason why more people with hearing losses shouldn't have the opportunities and experiences that I have had. (Social, political, psychological, and individual trends come into effect instead - now those are the snarky ones.) Why me? Why should I have this, if others don't?
This isn't a post intended to lay out areas in which the framework of deaf life in America could improve - clearly there are many - but, rather, a bit of a meditative outburst. These outbursts happen to me every once in a while, and I think the current one is worthy food for thought. This year I'd like to grapple with such questions a bit more head-on, as well as reach out and find other deaf individuals who have succeeded in their areas of interest, and how, and why. Yeah, deafness can be a big deal - but at the same time it isn't. With the right kind of environment, it really isn't.
I applied for a job earlier this month, and got a prompt email response praising my resume as well-qualified, with the inevitable line, "Please give me a call at xxx number so we can discuss this further." Oh, jeez. This again. Obviously I hadn't mentioned the whole deaf thing from the start; it was completely irrelevant. But obviously it had to come out now. So, taking a deep breath and feeling vaguely abashed (as I always do in such situations), I fired off a reply explaining that phone calls weren't an option for me, could we meet in person or email, et cetera. The answer I got: "How wonderful that you have gone this far in spite of being deaf." Uhhh. Yeah. Gah. And then a few evasive lines about being uncertain of whether I could manage the job because of my phone incompatability and challenges in receiving verbal feedback. Well, so much for that.
This is just one recent instance (and a pretty mild example, at that) of several things that I keep running up against. The necessity of labeling myself as deaf - which I am, yes, on one hand - even while I feel like I've morphed into some strange organism with head jumbled full of noise. Deaf, but not entirely. And not hearing either. The question of what I will be able to accomplish or do at any time in the future, and the uncertainty that accompanies such a state of flux. The assumptions that hearing people make, that everyone has the same mainstream abilities. The way I myself make these assumptions, that other people can see or run or jump or be athletic or learn quickly or eat an unhindered diet. (This bothers me. I hate assumptions, and hate that I should make them. But, in the end, aren't they necessary for collective groups to function?) Finally, the resentment that a deaf individual with my level of proficiency (in academic accomplishment, in verbal skills, in whatever) should be considered "exceptional." The perception that deafness is some sort of terrible barrier against high achievement.
Don't get me wrong, deafness can be a terrible barrier. No one knows that better than I do. But what most frequently makes it terrible, in essence, isn't the competence of the deaf individual in question - it's simply that the way the mainstream world works is incompatible with what that individual needs to thrive. Language. Accessibility. Early intervention. Visual media. Understanding. A social and therapeutic safety net. That this ideal environment doesn't exist isn't anyone's fault, not entirely. It's a problem that I don't quite know the answer to, but it bothers me constantly. Deaf people (contrary to the old moniker) aren't dumb. But I look around and don't see any of them at Stanford. I doubt there are very many at Harvard, Princeton, or Yale, either. I see very few of them in high-functioning, mainstream professions. I literally never see cochlear implants when I'm out and about. I think I'd just about do backflips if I ever glimpsed one. Growing up, I never had a deaf role model - my world was full of hearing people, and I wasn't sure what to do with myself. Many of the deaf peers that I had while growing up currently struggle in school, or hate it, or gape that I can achieve grades and acknowledgements and milestones on par with my hearing peers. In such a world, it's easy for me to forget that other accomplished deaf individuals exist.
This could be cause for me to celebrate and feel smug, but it isn't. I am reminded of how much I want a world where it's simply ordinary for deaf individuals to succeed to a high standard. It's not just that I don't want to be singled out. It's that there is no real cognitive, biological reason why more people with hearing losses shouldn't have the opportunities and experiences that I have had. (Social, political, psychological, and individual trends come into effect instead - now those are the snarky ones.) Why me? Why should I have this, if others don't?
This isn't a post intended to lay out areas in which the framework of deaf life in America could improve - clearly there are many - but, rather, a bit of a meditative outburst. These outbursts happen to me every once in a while, and I think the current one is worthy food for thought. This year I'd like to grapple with such questions a bit more head-on, as well as reach out and find other deaf individuals who have succeeded in their areas of interest, and how, and why. Yeah, deafness can be a big deal - but at the same time it isn't. With the right kind of environment, it really isn't.
Thursday, October 14, 2010
Advocacy, Really?
The older I get, the more interested I become in disability advocacy - mostly from wanting to apply my personal experiences toward positive change. Right now, though, I'm a bit frustrated (disillusioned?) with the advocacy scene in general.
Here's why. Today I attended a meeting for a disability advocacy group I'd gotten wind of, keen to contribute my abilities and perspectives. Of course, I went expecting no help from sign language or interpreters, and expecting little general deaf awareness - but, hey, since these people were already passionate about accessibility, wouldn't they be likely to really "get it" and communicate efficiently anyway? It turns out, no.
The scene, I thought, ended up being a bit ironic. Here's a small group of sharp, able-bodied people sitting and conversing avidly about how to solve disability and accessibility-related issues - all while forgetting the elephant in the room, that there is a disabled person in their midst, a person who is still struggling to engage despite all their well-intentioned talk. Argh. They all came across as inconsiderate - even though I am sure this was not their intention. And, from my end, asking people to slow down and speak in turn only goes so far. People forget, get wrapped up in their own ideas. All my CI did to help was pick up on the traffic noises outside, plus the bartender pouring drinks, wiping counters, and sliding chairs across the floor. Thanks a lot.
I won't go on, but I will say this at least. True inclusiveness requires action, directed toward the people whose needs are most immediate - not only theoretical strategies. Walking the talk, so to speak. General "advocacy" means nothing if it's impersonal.
Here's why. Today I attended a meeting for a disability advocacy group I'd gotten wind of, keen to contribute my abilities and perspectives. Of course, I went expecting no help from sign language or interpreters, and expecting little general deaf awareness - but, hey, since these people were already passionate about accessibility, wouldn't they be likely to really "get it" and communicate efficiently anyway? It turns out, no.
The scene, I thought, ended up being a bit ironic. Here's a small group of sharp, able-bodied people sitting and conversing avidly about how to solve disability and accessibility-related issues - all while forgetting the elephant in the room, that there is a disabled person in their midst, a person who is still struggling to engage despite all their well-intentioned talk. Argh. They all came across as inconsiderate - even though I am sure this was not their intention. And, from my end, asking people to slow down and speak in turn only goes so far. People forget, get wrapped up in their own ideas. All my CI did to help was pick up on the traffic noises outside, plus the bartender pouring drinks, wiping counters, and sliding chairs across the floor. Thanks a lot.
I won't go on, but I will say this at least. True inclusiveness requires action, directed toward the people whose needs are most immediate - not only theoretical strategies. Walking the talk, so to speak. General "advocacy" means nothing if it's impersonal.
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