“I'd pretend I was one of those deaf-mutes. That way I wouldn't have to have any ---- stupid useless conversations with anybody. If anybody wanted to tell me something, they'd have to write it on a piece of paper and shove it over to me. They'd get bored as hell doing that after a while, and then I'd be through with having conversations for the rest of my life. Everybody'd think I was just a poor deaf-mute bastard and they'd leave me alone.”
Holden Caulfield from The Catcher in the Rye,
What I learned about myself and responses to issues presented
I began watching the documentary, Through Deaf Eyes, without sound so I could experience what it’s like being a deaf person and rely on reading subtitles like watching a silent film. But when Beethoven’s Nightmare (deaf rock band) appeared within the first five minutes, I was curious to hear sound. I clicked the mute icon to turn the speaker on and got hooked on to sound.
Though I was disappointed in myself because of my utter lack of discipline in maintaining silence like a deaf person, I just felt sound added an extra dimension to the viewing experience. For example, I like to watch foreign language films by reading subtitles and hearing sound though I might not even understand the spoken language because varying tones provide emotional context. I also love music, which I would really miss if I lost my hearing. At the same time, I love American Sign Language (ASL) as an expressive language when I studied it several years ago, but found the dramatizing to be a lot of work mentally and physically.
While I like the ability to turn sound on and off, I can identify with deaf persons based on the shared experience of being “different,” not fitting in within a larger majority. I think this feeling of not really belonging to the majority, but mostly observing them as an outsider, has made me more introspective so I’m more sensitive and respectful of differences. Thus, I learned that I still feel righteous indignation anytime the film covered insensitivity or ignorance by the hearing majority’s treatment of deaf persons—e.g., Alexander Graham Bell’s promotion of eugenics and oralism; U.S. Civil Service policy to no longer allow deaf to work for the government; attempts to cure deaf by airplane loops or revival; National Association of Deaf’s discrimination against deaf blacks until 1965, etc.
During the 1988 Deaf President Now protest, I found it outrageous when the fire alarms went off and Gallaudet University Board Chair Jane Spilman asked deaf students, “How can you understand me with all this noise?” Seeing Spilman, who wasn’t deaf and didn’t know ASL, made me wonder if she was the one with the disability because she was dependent on an interpreter among the deaf who knew ASL.
In the film, one woman mentions about wanting to be “normal” while growing up, but now as a mature adult, she likes being different. Another talks about being pliable like a marshmallow – being afraid to show her true self, confused about wanting to speak or sign, but just wanting to connect with people. Yet another acknowledges the “met deaf wow” experience of finally meeting with other deaf persons who share a common experience and feeling like “you’re home.” From watching this film, I learned that I could relate to these universal struggles about being different and wanting to be accepted and understood on my own terms.
I was struck by how some deaf persons insisted that they’re “really normal,” while others celebrated being deaf as intrinsic to their identity and happiness so they would not wish to change (e.g., actress Marlee Maitlan, who said she’s used to being deaf). If I lost my hearing, I would feel regret and try to live with my limitation, but still aspire to be hearing again because some sounds are so beautiful that they really enhance the quality of life. But as one mother put it, her deaf son has no experience of hearing so he doesn’t miss it. Instead, many deaf persons focus on what they can do – just like my deaf uncle, who seemed to compensate for his hearing loss with amazing talents in painting and carpentry.
How watching the film changed my understanding about deafness
Before watching this film, my understanding about deafness was mainly through personal relationships with hearing impaired elders and family members who gradually lost their hearing so they view their hearing loss as a disability. For example, my uncle lost his hearing as a teenager over 40 years ago, and recently had a cochlear implant at age 60; being able to hear again has ended some of his isolation because he now has the ability to be engaged in spoken conversations, or not. My uncle’s favorite mug says, “I’m not deaf. I’m ignoring you.” One advantage of being deaf is not hearing so you can shut out unpleasant noises (including hurtful things spoken by inconsiderate people)—like Holden Caulfield playing deaf-mute. In the film, we see Beethoven’s Nightmare musicians playing music loud enough so they can feel the vibration but they don’t have to worry about hearing loss because they’re already deaf!
Because I work with elders who are progressively losing their senses (hearing, seeing, smelling, tasting, touching), I’m influenced by their perspectives that they’re no longer at the prime of their lives and some work very hard to prevent further “losses” and/or to reverse declining organ functions. Thus, I found refreshing Rory Osbrink’s perspective that being deaf is “normal”—not a physical handicap: granted accommodations are made to survive in a society dominated by hearing people; but if we (hearing people) were to come into a room full of deaf people, then we would need the accommodation, too. Why do we expect deaf persons to lip-read, when most hearing persons can’t lip-read themselves? If we expect deaf persons to lip-read, can they likewise expect everyone else to meet them where they’re at and communicate in sign language? We live in an unfair world where majority rules and thus defines “normal” – but the silver tsunami (aging baby boomers) may change this!
There’s diversity among the deaf: some favor oralism and adopt cochlear implants as a way to better assimilate into a hearing world, while others view sign language as part of their special culture. Several deaf persons spoke about the hard work involved in lip-reading: arranging circumstances so the speaker looks directly at you, with light and no background noise. One deaf woman who got worn out lip-reading finally decided she would turn off her voice so others would stop assuming that she didn’t need an interpreter because speaking is a two-way communication.
Steps to create a more inclusive future
Based on the Action Continuum to confronting oppression, I will take the following steps to create a more inclusive future:
- Recognize oppressive actions and prepare to take action to stop it: It’s important to respect people’s right to self-determination, so we should ask how a deaf person prefers to communicate, and then we should accommodate individual choices—rather than expect that everyone conform to the majority. Taking this full-day Ableism class has raised my consciousness to view disabilities from a difference/minority experience rather than a medical model or characteristic of a person—I’m more conscious of saying, and correcting others to say, “persons with disabilities” (PWD) instead of “disabled persons.”
- Educate self about oppression and support the target group: The medical model often means prescribing medication/diet/physical therapy to the PWD instead of changing the environment to provide access/accommodation to the PWD. I look up to heroes like Gallaudet and Clerc (deaf himself) who had a great deal of empathy so they could see that signing was a natural and practical language for deaf persons. When I don’t share a spoken language, I resort to charades. I plan to learn more about other disabilities so I can be more sensitive to special needs.
- Educate others by question and dialogue to share why I object to a comment or action. I will share Disability Etiquette Tips; for example, don’t bother shouting at someone who doesn’t share the same language—try communicating with facial expressions, gestures or body language instead, or get an interpreter.
- Support by backing up others who speak out, form allies, join coalition, etc.: I support deaf persons to lead deaf organizations (like
- Initiate and prevent: I will challenge persons like Alexander Graham Bell, however well-meaning they may appear, who attempted to ban signing in favor of oralism in the belief that this would integrate deaf persons within the wider hearing society that defines “normal” standards.
Technology (email, twitter, texting, etc.) has helped to bridge the gap between the deaf EYEth and hearing EARth. I support free choice and accept people for who they are, especially if it’s something they can’t change like being deaf. (More important is one’s character!)
I am just beginning to work as an advocate on elder issues which include disability access. This year the first of the baby boomers turn 65 (“silver tsunami”) and their sheer numbers are sure to influence how we view and accommodate PWD related to aging. Instead of focusing on “losses” as limitations, we’ll focus on making accommodations and appreciating what PWD can still do!
Note: Presbycusis ("old man's hearing") is the most common form of hearing loss with aging. It is characterized by a decrease in perception of higher frequency tones and a decrease in speech discrimination. It's hard to determine how much of the hearing loss is due to aging, exposure to environmental noise or chronic age-related conditions (hypertension, diabetes). (http://www.nidcd.nih.gov/health/hearing/Pages/presbycusis.aspx)
References:
Action Continuum to Confronting Oppression: http://www.stepupprogram.org/docs/handouts/STEPUP_Action_Continuum.pdf
Community Resources for
Through Deaf Eyes: http://www.pbs.org/weta/throughdeafeyes/
‘Cure’ Me? No, Thanks
ReplyDeleteBen Mattlin
DISABILITY MARCH 22, 2017
Near the end of last year, the Food and Drug Administration approved the first drug for the treatment of spinal muscular atrophy. .
…S.M.A. is the No. 1 genetic cause of infant death…new drug, Spinraza, sold by Biogen and developed with Ionis Pharmaceuticals, will be a godsend for many. Without it, babies born with this condition, which causes debilitating muscle weakness, have only slightly better than a 50-50 chance of surviving past age 2.
…But the long-term effects are unclear. The F.D.A. approved the drug in less than three months under “priority review.”
As someone born with S.M.A. 54 years ago — a wheelchair user since the age of 3 who has never walked or stood — I fear for those like me who may never look at their lives the same way again. I fear that Spinraza, while giving hope, and perhaps a stronger and longer life, to some, may also release a torrent of self-doubt, of pent-up insecurity about our inexorable dependence and emaciated bodies. In some ways, it could make it harder for many of us to live with this type of disability.
Like many disabled adults, I’ve long since become accustomed to my physical limitations and all they entail. Call me set in my ways, but I can’t fathom not tooling around on wheels or no longer needing assistance with all manner of physical tasks, such as brushing my teeth and driving my lift-equipped minivan. I’m comforted to be always in the company of helpful people and devices, to truly understand the notion that no man is an island. This is the only way I’ve ever known.
…I didn’t want to give up everything I’d grown used to, everything that made me me. My disability experience had already informed my perspective on the world, and I had no interest in risking any alteration.
I know now that it’s not all about me. My disability takes a toll on my family. It’s a drain on my wife’s energy and time, not to mention the wherewithal of our children. It’s a financial burden on my father and stepmother, who help with the bills (my personal-care attendants alone cost $40,000 a year).
Yet none of them are urging me to take the leap. It’s not as if Spinraza is truly a cure anyway. It may slow or stop the progression of weakness in some users, but the underlying condition remains. While approved for every age and for every stage of S.M.A
…But what of the risks? Listed side effects include possible respiratory infections, kidney toxicity and blood clots. None of which would faze me if I had nothing to lose, but I do.
Equally daunting, the drug has to be injected directly into the spinal column several times a year. So it’s a commitment. It’s also an enormous investment, costing as much as $750,000 the first year and $375,000 annually forever after.
…My primary objection comes from my hard-won sense of self-esteem. Long ago I decided that if I was going to like myself, I had to make friends with the disability that was inherently part of me. Living with a disability is not easy. That’s why I became an advocate of fair treatment and equal access: I knew deep in my bones that things could be better…. Rather, society had to change, become more inclusive, more open to and validating of people with disabilities.
…To be clear, I have nothing against any advancement that will help others. Not everyone with S.M.A. (or any other disabling condition, for that matter) has the support I’ve benefited from. But not all of us in the target market are actually seeking this solution. I can’t help feeling there’s a contradiction between taking pride in one’s disability and hankering for a cure. You don’t try to cure something you like about yourself.
…even if it did eradicate S.M.A., the disability community will still be plagued by unnecessary and unfair impediments to equality and justice. Those are ailments that medicine can’t do anything about.
Ben Mattlin is the author of the memoir “Miracle Boy Grows Up.”
https://www.nytimes.com/2017/03/22/opinion/cure-me-no-thanks.html