枯叶蝶按：SHHH是美国的重听自助协会的简称，这是它的一个工作人员发表的论文。以前cicala（特别感谢她）做了初步翻译，这几年，经过思考和认 识，重读此文，有了不同的感受，枯叶现在做了重新翻译和修订。现在把翻译稿奉献给大家。当然中国不可能照搬他国的做法，枯叶的本意也不是一定要成立什么样 的组织，有着什么样的组织名分，枯叶是希望，从他人的论文汲取我们需要的东西，并为我们拓展思路，借鉴做法所用。身为重听，我们自己能作什么，能为他人做 什么，我们是什么样的人，我们希望非重听者怎么样去理解我们。这是我们都应该去思考的问题。
Developing an Identity for People with Hearing Loss 发展听力损失者的特性
by Donna L. Sorkin
Donna L. Sorkin著
（枯叶蝶注，以前cicala的初稿把hearing loss翻译为失聪者，我认为有待商榷，因为loss hearing—这个英文是泛指的英文称呼，包括了手语聋人等。因此在这次重新翻译和校订的时候，我觉得把这个翻译为听力损失者也就是我们说的听力障碍者，简称听障更贴切一些。听力损失者Hearing Loss包含了我们现在说的重听和聋人，如果单独指重听，应该叫hard of hearing，当然是否统一称呼为重(zhong)听,我觉得还有待讨论和商榷，现在有人提出口语聋人这个称呼，也有人说普校聋生，不管如何，都是在为这个做出努力。但在这个没有结论的时候，请允许我在翻译的时候，对 hard of hearing的翻译仍然沿用“重听”这个称呼。）
Participating in Self Help for Hard of Hearing People, whether at the National, state or local level, demonstrates that we are all part of a community of people who experience what we individually experience. our involvement helps us to better understand our own needs as hard of hearing people and to see solutions that have worked for others that might also help us.
Unfortunately, most people with hearing loss do not have the same opportunities for information sharing as those of us who are members of SHHH. As members, we are fortunate to have each other’s support because the vast majority of people with hearing loss do not identify with other hard of hearing people, and a great many do not even admit that they have a hearing loss. Indeed, by and large, we are a group of people who are often invisible to government, invisible to business, even invisible to those of us who have a hearing loss. Consequently, our needs are misunderstood or not thought about at all.
不幸的是，我们SHHH会员共享的信息资料，绝大部份听障者没有同等的机会获得。做为会员，我们很幸运地得到会员之间的相互支持。可是还有大量的失聪者并 不参与到其它的重听人当中去，相当多的人甚至不承认他们有听力损失。总的来说，通常我们的确是一群隐形的人，被政府视而不见，被企业忽视，甚至我们失聪的 同类也无法看到。我们的需求就必然地被误解或者根本不在考虑之列。
Developing an Identity 发展特性
The topic “Developing an Identity for People with Hearing Loss” is a subject that I’ve thought a great deal about and worked intensively on in the past three years since joining SHHH. Likewise, it is something that I hope that you as SHHH members will focus on. I believe that there would be tremendous benefit in establishing such an identity but, at the same time, I think that there are inherent conflicts in doing so. This article will examine the potential benefits as well as the conflicts that make such efforts difficult.
把本文标题命名为“发展听力损失者的特性”，是我深思熟虑后的结果。这一题材也是我加入SHHH起的过去三年中，一直致力的工作内容。同样，我也希望这是 你们（指SHHH会员）所关注的焦点。我相信，创建这一特性会产生巨大利益，但同时，我们做这件事也必会产生争议。本文将阐述潜在的利益和给我们工作造成 障碍的争议。
Not long ago, I was asked by a young woman to appear in a video that she hoped to produce about “the hard of hearing culture.”
“Excuse me,” I said. “I’m not sure that I understood what you said. A culture of hard of hearing people?”
SHHH dedicates itself to providing hard of hearing people and their families with information and support enabling people to live productive and fulfilling lives. In addition to our national organization, many of our members gain support from others like themselves in our 250 local chapters that thrive in communities all across America.
Like hard of hearing people everywhere, our members seek adaptations that will allow them to live in the mainstream of society — not in a separate enclave of people who are distinguishable from others only by virtue of the fact that they do not hear well.
y own personal experiences support this perspective. I grew up with hearing loss in my family — both my father and paternal grandmother were hard of hearing. With hearing aids, which my father wore for 20 years, he generally functioned well in quiet settings at close range from the speaker. Working, however, became increasingly difficult. Using the telephone became arduous; and participating in large meetings — a key part of his job — became impossible. The constant strain of not hearing eventually forced my father’s early retirement at age 52.
我的个人经历佐证了这个观点。我在重听家庭中长大——我的父亲和祖母都是重听人。我的父亲带了20多年的助听器，通常在安静环境中且离说话者距离较近的时 候，他可以很好地交流。但是，工作对他来说逐渐变得困难。打电话变得异常艰难；参加大型会议（这是他的首要工作）成为不可能的事。最终由于失聪而形成的持 续高压迫使我的父亲在52岁时提前退休。
My father never discussed the health issues that made working impossible, though it was obvious to all who knew him that he was not ready to retire. I assumed at the time, as did other family members and friends, that his early retirement was necessitated by high blood pressure and angina exacerbated by his work environment. It was not until my own hearing deteriorated, well after his death, that I learned from my mother the real reason that he had retired. By then, I understood only too well the frustration he faced in trying to perform a job requiring high levels of communication. In 1970, the concept of making accommodations for employees with hearing loss to enable them to perform their job was unheard of.
即使所有认识他的人都明知他不预备退休，但我父亲从不讨论导致他无法工作的健康问题。那时与其余家人、朋友一样，我以为：由于父亲的工作环境使他身患的高 血压和心绞痛不断恶化的事实，导致他提前退休是必然的。父亲安然离世后，直到我自己的听力状态恶化时，我才从母亲那里知悉了父亲提前退休的真正原因。到那 时，我才深深理解他面临工作需要他高水准的交际能力时的无奈。为听障雇员提供方便以使他们能完成工作，这种概念在七十年代并不为人们所知。
My father died before passage of the Americans with Disabilities Act, landmark legislation passed in 1990 that requires public facilities, including work places, to provide reasonable accommodations for people with disabilities. Like most people of his generation and many today, my father did not discuss the problems that his hearing loss caused for him. It was a burden that he kept to himself and, consequently, one that I did not understand until I was faced with it myself in my mid-30s, the age when my own hearing changed so dramatically.
我父亲死于美国残疾法案的通过之前，这一具有里程碑意义的立法在1990年通过，它要求公共设施，包括工作场所，为残疾人提供合理的便利。我的父亲，和今 天的许多人以及他那年代的绝大部份人一样，闭口不谈失聪给他带来的困扰。这成为他个人的负累，也成为我无法理解的问题，直到30多岁，我自己的听力遭遇戏 剧般地恶化而亲面这个问题时我才能理解。
The stigma associated with hearing loss contributes to the reason many of us avoid discussing the impacts of hearing loss, in the same manner that my father avoided talking about his difficulties at work. Indeed, many people do not even openly discuss the fact that they are hard of hearing. As a consequence, the vast majority of us still don’t seek the technology and other adaptations that can dramatically improve one’s ability to communicate.
I experienced a progressive hearing loss as an adult and remember well how I struggled to find solutions that would allow me to retain my ties to friends, family, and work in a world in which most people hear normally. I always sought strategies that would enable me to function effectively in the hearing world, and it was this desire that led me some years ago to the unique type of aid provided by SHHH.
Unlike my father, I was fortunate to know other people who had successfully utilized technology and other means of coping that helped them remain in the work force and enjoy a variety of social activities. I also learned from others the skills that I needed to be open about hearing loss and tell others what I needed to be able to communicate effectively. But, like my father and my grandmother, I never considered myself to be distinct from other people simply because I could not hear well.
People who are part of Deaf culture do not view their inability to hear as something that needs to be “fixed.” Rather, they believe they are a subculture which has its own language, American Sign Language. They embrace their deafness with pride and note that they have a cultural identity all their own. Many deaf parents cheer when they discover that their newborn child shares their deafness. Indeed, I recall after I asked a young deaf man about his new baby, being told by him with enormous pride that his son was “profoundly deaf, third generation.”
接受聋文化的人（枯叶加注：应该指聋人，特别指以聋为荣的那些人们）不认为他们的听不见有“修复”的必要。他们颇有点儿认为他们是一个亚文化，有自己的语 言——美国手语。他们以聋自傲、对自己的聋欣然接受，拥有自己的文化特性。很多聋人父母发现他们的新生儿也和他们一样是聋人时感到欣喜非常。的确如此，我 想起来一件事，我问过一个年青的聋人父亲，关于他的新生宝宝，他无比自豪地告诉我，他的儿子是他家族的“第三代全聋。”
There is even a sense of suspicion about those who hear normally among some deaf people. One deaf activist spoke about this wariness of outsiders, those who are not a part of Deaf culture. She said, “If I happened to strike up a relationship with a hearing person, I’d have considerable trepidation about my deaf parents reaction. They’d ask, “What’s the matter? Aren’t your own people good enough for you?” And they would warn, “They’ll take advantage of you. You don’t know what they’re going to do behind your back.’ ” (New York Times)
聋文化活动在聋人当中的一些听力正常的人甚至产生了疑念。一位激进的聋人就为何对待聋文化之外的人如此小心谨慎发表过意见。她说：“如果我偶然与健听者关 系稍好，我就会因我的聋人父母的反应而诚惶诚恐。他们会问‘怎么了？难道自己人对你不够好？’而且他们会警告说‘别人在利用你。你不知道他们在你背后做些 什么。’”（纽约时报）
Although most of our hard of hearing SHHH members are comfortable with who we are — many of us would readily seek a “cure” if a safe and reliable method of reversing hearing loss were available. This attitude of seeking improvements further distinguishes us from people who consider themselves to be part of Deaf culture — people who would not choose to hear even if that option were possible.
虽然我们绝大部份重听的SHHH会员与聋人相处愉快。但是，如果有恢复听力的安全可靠的可行办法，我们大多愿意选择进行治疗。我们所抱着的尽力改善听力的 态度把我们从自认为是聋文化的那部份人当中区分开来，他们不选择听（枯叶注：指接受了聋文化的聋人放弃了使用自己残余听力和口语这种沟通方式），即使这种 选择是有可行的。
So, to return to the young woman’s request to appear in the film about a hard of hearing culture. Once I clarified the topic, I declined. I told her that I felt that hard of hearing people had a different approach to their lives than deaf people who have their own language and consider themselves to be part of a separate culture. In fact, our objectives are just the reverse; those of us who are advocates for self help endeavor to assist people to develop the skills and self-confidence to live in the mainstream of society.
Further, a large number of people do not identify themselves as having a hearing loss. Many deny the fact that they are hard of hearing, and some simply are unaware that they are missing things. And even when people do address their hearing loss in a productive manner, the vast majority are not involved in organizations like SHHH. We all know how difficult it is to reach the people who need our help. But the fact is that most don’t desire to be so involved. Unlike people who are part of Deaf culture, hard of hearing people generally don’t, as one of our members once remarked “cluster together” like ethnic, religious or other interest groups.
进一步地说，大量的人不认为自己有听力损失。很多人否认他们是重听的事实，有些则是简单地没感觉到他们正在丧失听力。即使人们确实在很多方面为解决听力损 失以及听力损失带来的一系列问题而努力，许许多多的人还是没有积极地参加到SHHH这样的组织当中。我们都知道要与这些需要我们帮助的人取得联系有多困 难。而事实是他们大多并不愿意积极参与。与聋文化中的人不同，重听人不再把自己当作是群聚的组织（如种族、宗教或其它利益组织）当中的一个成员。
Given the fact that we are not and likely never will be a “culture” in the same sense that there is a Deaf culture, what can we do to better accomplish our objective of raising public consciousness about hearing loss? What might be done to improve the public policies of government and the private policies of the business sector to better address our preferences and needs? How could we be more effective in reaching individuals and encouraging them to take advantage of behaviors and strategies that could help them live fulfilling lives?
重听者没有或许永远也不会有一种与聋文化同等意义上的“（重听）文化”，这是必须承认和接受的事实，那么我们还能做些什么来达成我们的目标？我们的目标是 唤起公众对听力损失和听障者的认识？我们能做什么来改变政府的方针和企业部门的策略以更好地满足重听者的需要和偏好？我们怎么样才能做到与重听者本人联 系，并鼓励他们利用行为和谋略帮助他们生活得满意？
Without attempting to promote a “culture,” can and should we attempt to develop an identity for ourselves — people with hearing loss — and thereby serve to increase public understanding and bring about societal change? These questions are the focus of the remainder of this paper.
It’s instructive to take a look at our demographic characteristics and numbers. The total population of people with some degree of hearing loss in America, mild to profound, is between 24 and 28 million — with the range affected by who is doing the counting. That number is approximately 10 percent of the United States population.
We also know that the incidence of hearing loss varies by age. Approximately 2 percent of children, under 18 years of age, have some level of hearing loss. By age 40, the incidence of hearing loss rises to 10 percent. And by age 65, one-third of the population has a hearing loss. Further, of the 24 to 28 million people with hearing loss in America, perhaps two million have a profound hearing loss. That two million translates to between seven and eight percent of the population of people with some level of hearing loss.
I have a profound hearing loss and fall into this category. With cochlear implant surgery and follow-up rehabilitation, people who are adventitiously deaf now have the opportunity to have some level of hearing restored. Increasingly, children who lost their hearing before learning to speak are able to benefit from cochlear implants. They too can learn to function as hard of hearing people with appropriate rehabilitation programs just as I now function the same as a hard of hearing person who has been effectively fitted with hearing aids. Although I am clinically deaf, I never refer to myself as being deaf because I wish to emphasize the fact that I use my residual hearing.
我是重度耳聋，从这个开始讨论吧。藉由耳蜗移植手术及术后的康复，突发性耳聋现在有机会获得某种程度的听力恢复。慢慢地，语前聋的孩子就能够由耳蜗移植获 益。经过适当的康复程序，他们也能成为重听人（枯叶注：意思是成为重听者那样使用自己的残余听力，口语交流），就像我，一个重听人，非常适于带着助听器。 虽然我临床诊断为耳聋，但我从不把自己当聋人提及，因为我希望强调我使用残余听力的事实。
So, what can we say about the characteristics of those with profound hearing loss? What percentage are people like myself who function as hard of hearing people and live entirely in the hearing world?
It turns out that people who rely on sign language as their primary mode of communication comprise a small proportion of the population of people with hearing loss. It has been estimated that between 300,000 and 400,000 Americans with profound hearing loss rely upon sign language as their primary mode of communication. People in this group generally consider themselves to be part of what is referred to in America as Deaf culture. Although they are very visible and have enjoyed extensive coverage in the popular press, in fact this group comprises no more than two percent of the entire population of people with hearing loss.
Although people who rely on sign language and tend not to use their voices comprise a small proportion of the total population of people with hearing loss, Deaf culture has become a very visible and influential group in America. And, consequently, government and the general public increasingly equate the preferences of this group with the needs of anyone who has a hearing loss. We have seen this develop in many ways.
We receive many letters from people complaining that they have called ahead when they planned to attend a meeting with government officials or others and asked for hearing accommodations, specifically assistive listening devices or captioning, and been told, “Oh, but we will have sign language interpreters.” And when they explain that, like most people with hearing loss, they don’t know sign language they are met with bewilderment on the other end. This response is becoming commonplace all over the United States. And it is happening because deaf people have been visible and outspoken and especially organized about their needs and rights. And it is entirely appropriate for them to do so.
The problem lies in the fact that we, as hard of hearing people, have not been so organized about articulating our own needs and our rights. Deaf people have also been successful in not only making the public aware of their needs but also making their preferences widely recognized as being “the right thing to do.”
I recently attended a fund raising dinner for a center providing audiological and medical services for people with hearing loss. The attendees were a diverse mix of parents of deaf and hard of hearing children who were patients of the center; scientists, physicians and audiologists; and hard of hearing people, like myself. Although the event, which featured a well known political figure as the speaker, provided an American Sign Language interpreter, there were neither assistive listening devices nor captioning. I had not inquired in advance about hearing accommodations because I had assumed they would be provided. How ironic that even at a dinner organized for a hearing center, the organizers had succumbed to political correctness and provided an interpreter but had failed to think about the needs of the very group of people who are the recipients of the center’s services. I saw no one at the event using the interpreter but several would have been grateful for assistive technology that would enhance the effectiveness of their hearing technology.
我最近参加了某慈善中心的筹款晚会，该中心为听障人士提供听力学及医学方面的服务。参加晚会的人形形色色：有聋父母、重听孩子，他们是该中心的病人；有科 学家、医师和听力学专家；也有我这样的重听人。此事由一位众所周知的政坛名人发起，他也是演讲者。虽然晚会提供了美国手语翻译机，却没有助听设备也没有字 幕。我以为应该提供这些设备，所以我没询问有关助听设施的事情。甚至在听力中心组织的晚会上，组织者虽屈从于政治上的合乎时宜而提供手语翻译机，却疏于考 虑大部分接受该中心服务的人群的需求，多么具有讽刺意义！在晚会上我看到没有一个人使用翻译机，不过若晚会有帮助重听者更好听的助听技术，不少人会因此感 恩。
Coverage of Deaf culture in the popular media — television, radio, and print — has been extensive in recent years. After hundreds of years of repression, Deaf people are now proud of their language and the unity they feel in having a culture that binds them together. Sign language, the discussion of a subculture, even some of the more outrageous claims made by Deaf activists — all these make good copy. At the same time, hearing aids are rarely the subject of news accounts.
聋文化的报导近年来大量地出现在电视，广播，印刷品等大众媒体上。聋人经历数百年的压抑之后，产生一种把聋人紧密结合在一起的文化，聋文化的语言和统一性 让今天的聋人颇感自豪。手语、亚文化的讨论、甚至一些无节制的要求也都被聋人激进分子提出来——这些全部挣来不错的回报和关注。同时，助听器很少成为新闻 报导的题材。
Certainly such efforts could hardly be viewed in a negative light; any activity that serves to educate the public about the needs and preferences of a disability group is worthwhile. Further, there are many instances in which hard of hearing people and people who communicate with sign language share common needs and thereby benefit from each other’s increased visibility. SHHH has formed strong partnerships with organizations representing deaf people at the National and local levels to promote telecommunications relay services as well as the expansion of captioning on television, on videos, and most recently in movie theaters. The Americans with Disabilities Act requires the provision of whatever accommodations the individual needs to fully participate in society. We have worked closely with the Deaf community first, on passage of ADA, and most recently, to ensure that the Act is enforced. So, certainly, there have been many positive outcomes for hard of hearing people as a result of greater awareness about deafness.
当然，以否定的眼光看，很难察觉这样的努力成果；教育公众知悉残疾群体的需求和偏好，任何一种为公益服务的活动都是值得的。进一步地说，很多事例表明，重 听人与手语族有着共同的需求，因此，也能从相互增加的受关注程度当中得到好处。SHHH已经与国家及地区级的聋人代理机构形成强力合作，促进电信传输服务 升级，就如同在电视、影碟、以及近来在大部分电影院加字幕一样。美国残疾法案要求提供个体所需的任何便利设施以便个人充分地参与到社会活动中。我们最近经 常在ADA（美国聋人协会）附近的聋人社区附近工作，可以担保该法案得到了实施。那么，对重听人必然产生积极的影响，结果是社会公众将对耳聋有更多的认 识。
The problem from our perspective is that the absence of comparable discussion of hard of hearing needs leads the general public, as well as people who know better, to lump everyone’s needs and preferences together. There is a perception that the group of people who use sign language is significantly larger than it really is. And, as a group, we have been relatively ineffective at communicating our message.
The reasons for this are complex and not, I believe, easy to resolve. Among the factors are that many people who are hard of hearing do not identify themselves as such and also that our objective is often to help people live in the mainstream, not to focus on their hearing loss.
There’s another important and related theme that I’ve often heard articulated. Having a hearing loss, wearing a hearing aid, is not the same as wearing eye glasses. There is a reticence, almost a shame, about having a hearing loss that often discourages a hard of hearing person from seeking help and taking productive steps. Some people describe this as the “stigma” of hearing loss.
I’d like to share a story about a man I know. He’s the husband of a dear friend whom I have known most of my life. She knew me when I had normal hearing. And she watched and tried to help as my hearing deteriorated. Among all my friends, I think she probably understood best how painful it was for me to lose my ability to function in many settings.
Some months ago, her husband experienced a sudden profound hearing loss in one ear. He floundered around a bit and eventually consulted with a local otolaryngologist who started him on a drug treatment but gave him no information on the likely impacts on his ability to hear.
But what was even more telling was the fact that his response was to deny he was having problems and avoid telling anyone about what had happened. Not even his wife’s close friend who has a hearing loss and heads the national organization of and for people who are hard of hearing. She told me quietly, when no one else was around, only because he had admitted to her that he was having a great deal of difficulty hearing in noisy environments and she was seeking advice. Although I probably should not have been so surprised, I was absolutely floored by their response to hearing loss.
更要告诉大家的一个事实，他的反应是否认他有问题并且避免告诉任何人实情。即使对方是他妻子的失聪好友或者是全国失聪者组织的领导人，也是如此。四周无人 时，她悄悄地告诉我，他只对她承认过他在嘈杂的环境中听音很困难，她在征求我的建议。也许我不应该太诧异这个，但是事实上，他们对失聪的反应使我大感震 惊。
The stigma of hearing loss manifests itself in many ways. But the outcome is always the same. People neglect taking steps that could help them. Family members, friends, teachers, co-workers and acquaintances make inappropriate judgments. The individuals sense of self-esteem suffers, and he or she is prevented from living their life to full potential.
Possible Actions 可以采取的行动
I would like to conclude with some suggestions for possible actions that all of us, members of Self Help for Hard of Hearing People, might collaborate on to address these issues. How marvelous it would be if we could set in motion a movement all across our country to increase awareness and understanding of our needs and preferences. And how much more effective our individual efforts might be if we could do this together.
A logical place to begin our effort would be to more carefully encourage media coverage in your local newspapers, radio, and television stations that highlights both the benefits of technology and the importance of providing other kinds of support to people who are hard of hearing. Such public discussion gives others an opportunity to be both knowledgeable about issues, and, if they so chose, be a participant in them.
Our experience at SHHH has demonstrated that it often takes multiple “hits” or contacts with a hard of hearing person before they take action about their hearing loss. Learning about and seeing others address similar concerns in a successful fashion is the best way to encourage someone to take action that can help them.
I believe we should encourage positive news stories about people of all ages demonstrating that technology and other strategies can help people live normal, productive lives. Unfortunately, as many of us are all too aware, gaining such media coverage is often serendipitous and can be dependent upon factors beyond our control. At the same time, I can also attest to the fact that given consistent efforts to gain such attention, one can gain positive results — at least some of the time.
我相信我们应该支持正面的有积极意义的新闻，报导各个年龄段的重听人的故事，来说明通过技术和对策可以帮助人们过上正常的、丰富多彩的生活。不幸的是，我 们多数人都知道，获得媒体的报导的机会充满偶然而且不能由我们来决定和控制。但同时，我也能证明这一事实：持续努力以获得关注，至少可以产生正面效果—— 至少有些时候是。
Secondly, I think it is imperative for us to distinguish between our needs as people who want to use their residual hearing from Deaf people for whom sign language is their preferred mode of communication. Although there will always be areas of collaboration with Deaf people, and we should strive to find these and work together, there are also important differences in how we chose to communicate. By not clearly delineating these differences, we confuse government, business, the general public, and people with hearing loss. I encourage you to speak up about what your needs are. Ask in advance that accommodations — assistive listening devices and real-time captioning — are provided. Explain to people that like most people with hearing loss, you don’t know sign language but you do want to use your residual hearing to the extent that you can.
第二，我认为，把我们这些想要使用残余听力的重听与那些以手语为主要交流方式的人区别开来势在必行。虽然与聋人合作的领域很广，我们也应该努力找到这些领 域，并与聋人共同工作，但是，我们在如何沟通上与聋人存在重大差异。不清楚地界定这些区别，我们就会使政府、企业、公众和听障者感到困惑不解。我支持重听 者者大声地说出需要什么。比如预先要求提供便利设施——助听设备和实时字幕。就像大部份的听障人士一样，向人们解释你（们）不会手语但你希望尽你所能地使 用残余听力
If all of us make a greater effort to speak up about what we need to be able to communicate and if we try more consistently to tell our story in a compelling way to the public, we can and will be successful in gaining the same level of understanding of our needs as deaf people have of theirs.