Sunday, September 30, 2012

October is Disability Awareness Month

Since diversity makes life richer, we should promote inclusiveness and universal design to create environments for people of all abilities.  Last year, I wrote the following paper for my Ableism class that challenges assumptions about “disabilities”—like aging is not about degeneration but strength based on endurance and wisdom from living an examined life.
 Through Deaf Eyes

“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, by J.D. Salinger

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:
  1. 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.”
  2. 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.
  3. 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.
  4. Support by backing up others who speak out, form allies, join coalition, etc.:  I support deaf persons to lead deaf organizations (like Gallaudet University) because we need role models from similar backgrounds (inspiring people so they can be empowered to do anything in this world!) who personally understand deaf experiences. 
  5. 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:


Arizona Bridge to Independent Living covers etiquette tips relating to persons using wheelchairs and persons with speech difficulties, cognitive/language impairments, hearing and vision losses, and multiple chemical sensitivities:  http://www.abil.org/disability-etiquette-tips

Community Resources for Independence covers etiquette tips relating to persons with mobility, cognitive, psychiatric, visual, hearing and speech impairments:  http://www.crinet.org/education/Independent%20Living/Etiquette

Aging + disability: common ground? yes, we can!

In my Aging Processes class, I underwent several “aging simulation” exercises intended to experience first-hand the effects of age-related sensory losses (vision, hearing, taste + smell, touch) on activities of daily living (ADL). 

As a result, I learned to value my strengths in remaining senses (e.g., touch and smell to compensate for vision and hearing losses), go slow and pay more attention to navigating my environment, give up some independence and allow others to help me get around safely, appreciate Impressionism and the sound of silence, get motivated to learn Braille, be patient and adapt to taking a longer time to perform activities.  (See fact sheet on Physical Changes of Aging, with suggestions on managing these changes, at http://edis.ifas.ufl.edu/he019.)

These exercises also further reinforced my advocacy efforts for universal design to make our environments accessible to people of all abilities.  As we go through life, it seems a majority of us will experience sensory impairments, either temporarily or permanently, so we’re all in this together to improve the quality of life for everyone.

On April 16, 2012, the U.S. Department of Health and Human Services created a new organization, Administration for Community Living (ACL), which consolidates three agencies for aging and disability services:  Administration on Aging (AoA), the Administration on Intellectual and Developmental Disabilities, and the Office on Disability.  The intent is to improve community supports for older Americans and people with disabilities to enjoy “the fullest inclusion in the life of our nation.”  (http://www.hhs.gov/news/press/2012pres/04/20120416a.html) 
Golden Gate Park's Project Insight Garden is open to people of all abilities!(http://sfrecpark.org/Rec-ProjectInsightProgram.aspx)

Living long + healthy

Does growing older mean living with chronic disease and accompanying disability?  What’s the reality of aging as opposed to social stereotype? 

The average 75-year-old American suffers from three chronic conditions and takes five prescription medications.  (http://www.silverbook.org/fact/21)  Yet, chronic diseases are mostly due to environmental and behavioral factors, rather than genetics or age, and are preventable.   (http://www.cdc.gov/chronicdisease/resources/publications/AAG/chronic.htm & http://www.californiahealthline.org/capitol-desk/2012/3/state-poll-numbers-support-prevention.aspx)

At the 5th Annual On Lok Conference on Sustainable Long-Term Care Cultivating Healthy Aging, keynote speaker Dan Buettner said that 20% of how long we live is dictated by genes, and the remaining 80% by lifestyle and environment.

Buettner’s research findings are published in his book, Blue Zones, where he identifies the Power of 9 habits shared by populations who live long, healthy lives with low rates of chronic disease.  It’s noteworthy that the common denominator is living close to nature:
1.      move naturally (versus exercise)
2.      “right” outlook: having purpose in life, daily rituals to de-stress
3.      eat wisely: plant-based, eat until 80% full (Confucius recommended 70%), moderate consumption of wine with food/friends (though Adventists abstain from alcohol)
4.      connect: loved ones first (intergenerational families), belong to faith-based community, right tribe to reinforce healthy behaviors

The conference ended with panelists discussing uses of technology to provide social networks, videogames and cell phone texting for medication reminders.  As a nature lover and reluctant blogger, I’m skeptical about making technology into a “healthy” habit.

I always thought a gardening habit—which provides natural movement, a reason to get up in the morning, daily meditation with nature to de-stress, fresh produce to eat, a form of recreation with family/friends, etc.—kept my grandfather alive through 9 decades.  Gardening happens in the natural, not virtual, world.
Blue Zones:  http://www.bluezones.com/live-longer/power-9/
2012 On Lok Conference presentations: http://www.onlok.org/Events/AnnualConference.aspx