Successful aging

At last month’s GSA meeting, I attended several sessions on successful aging and disability.  I was particularly interested in exploring the intersection of aging and disability because I was preparing for a class debate on assisted suicide at the time. 

What is successful aging?

In the influential MacArthur Foundation Study of Aging in America, begun in 1987 with findings published in their Successful Aging book in 1998, Rowe and Kahn defined successful aging as the ability to maintain three key behaviors or characteristics:  1) low risk of disease and disease-related disability, 2) high mental and physical function, and 3) active engagement with life.  While Rowe and Kahn noted the achievements of persons with disease-related disabilities (Stephen Hawking, Mother Teresa, Franklin Roosevelt), they maintained that freedom from disease and disability is a positive thing.  Compression of morbidity is a goal of disease prevention initiatives. 

Yet, the minority view of disability challenges any implication that disability is a negative outcome.  In addition, this successful aging definition has been criticized for assuming individual autonomy/control and lifestyle choices, without considering subjective/cultural perceptions and broader socio-economic conditions facing older adults that may limit their options in life.  In Outliers: The Story of Success, Malcolm Gladwell emphasizes opportunity and legacy—no one ever makes it alone.

Clearly, there is a need to revise this definition of successful aging to be more inclusive and to encompass factors such as resilience and adaptation to aging processes (Baltes’ selective optimization with compensation, Kahana’s preventive and corrective proactivity).  To join the lively conversation, the presenters in Public Health Implications of Healthy and Successful Aging (BSS) symposium posted their presentations online at http://healthyandsuccessfulaging.wordpress.com/. 

Next year’s GSA annual meeting theme is Optimal Aging Through Research (http://www.geron.org/images/pressreleases/2012/rubenstein.pdf)

What’s new about disability?

New Investigations of Aging with Disability (BSS) symposium featured data from National Institute on Disability and Rehabilitation Research (http://www2.ed.gov/about/offices/list/osers/nidrr/index.html).  While persons with disabilities are living longer due to advances in medicine, rehabilitation, public health and technology, they are experiencing an earlier onset of age-related conditions (osteoporosis, diabetes, obesity).  About 12 million Americans with disabilities acquired in early or mid-life are over age 50, thus aging with disability. 

Ivan Molton (http://agerrtc.washington.edu/) noted that secondary health conditions are frequently described as more significantly disabling than the original condition itself; for example, a person diagnosed with multiple sclerosis often copes with secondary conditions like chronic neuropathic pain, spasticity, gait/balance problems with greater fall risk, cognitive impairment, higher risk of infection, hypertension, accelerated arthritis, etc.  Middle-age is “lousy” for individuals aging with long-standing disability conditions because this is when highest demands meet new limitations; fatigue and pain are the most frequently reported and impairing; and falls are prevalent and injurious.  These secondary health conditions can be addressed with multidisciplinary pain treatments; interventions for fatigue and cognitive impairment; and falls prevention.

Tamara Heller (http://www.ihrp.uic.edu/researcher/tamar-heller-phd) created these word clouds for Aging and Disability, highlighting the prominence of health, exercise and program as common themes in health promotion interventions.  Disability can learn from aging’s greater focus on interventions for specific diseases/conditions and use of peer leaders delivering health promotion interventions.  Aging can learn from disability’s programming for people with cognitive impairments, adherence to principles of self-determination and adaptation of equipment for people who have physical disabilities.

Assisted suicide: autonomy or aging & disability risk?

For my Aging in Multidimensional Context class, I was assigned to a debate team opposing the legalization of assisted suicide.  Our major arguments were based on traditional morality that prohibits killing innocent human lives, the sanctity of a physician’s Hippocratic oath, the slippery slope effect that foresees the gradual devaluation of human life with risk to vulnerable groups, and alternatives available (hospice/palliative care for comfort and pain management, psycho-social counseling for depression/fear of losing control/adapting to impairments, etc.) to address an individual’s reasons for even considering assisted suicide.

Here’s what I had to say about assisted suicide’s risks to vulnerable groups like the elderly and persons with disabilities:

On a micro level, assisted suicide impacts the patient-physician relationship and vulnerable patients who can be manipulated into assisted suicide that’s not really their own choice.  A 1998 study by Georgetown University's Center for Clinical Bioethics found a strong link between cost-cutting pressures on physicians and their willingness to prescribe lethal drugs to patients – were it legal to do so.  The American Medical Association has opposed assisted suicide as being inconsistent with the physician’s role as healer, such as killing pain (Hippocratic “do no harm” oath), versus role as partner in assisted suicide to intentionally kill patients; how can a physician act in a patient’s best interest once a physician is given license to kill?  Does it make sense to hasten death when medical breakthroughs for treatment or cures are possible, while death is irreversible?

Proponents argue assisted suicide is about autonomy, that doctors should respect a competent and informed patient’s wishes and choices.  They attempt to draft laws to provide safeguards so assisted suicide is available to persons who are competent and informed.  Yet, one’s ability to make rational decisions is compromised by experiences of pain, isolation, depression, fears of disability/dependency and losing control, worry about being an undue financial and caregiving burden, prognoses about terminal illness and estimates of remaining life expectancy that can be unreliable.  When emotions are raw and continually evolving, one’s judgment is understandably impaired.  If a rational person is determined to commit suicide, it’s possible without legalizing assisted suicide to involve a physician. 

On a mezzo level, assisted suicide impacts the following groups:  patient’s family and friends who are concerned about a patient’s time left to live; elderly and persons with disabilities who see themselves as targets in assisted suicide laws that apply to terminally ill and/or those suffering incurable diseases and painful conditions; and the poor who become easy targets when assisted suicide is used as a form of medical cost containment in decisions on whether to prolong or shorten their lives. 

On a macro level, assisted suicide impacts religious groups (except Unitarians) that respect the sanctity of life for all persons (appreciating their remaining capacities versus the biomedical view that illness/disability diminish quality of life and the capitalist view that productivity determines the value of life); health care financing that would promote assisted suicide as a cost-cutting measure; and the public that may become accustomed to the idea of assisted suicide when the state sets a dangerous precedent by legalizing assisted suicide and eventually becomes desensitized to the very nature of assisted suicide.

As we have seen in European countries, legalizing assisted suicide sets the stage for the beginning of a slippery slope that expands to active euthanasia, as well as extending assisted suicide beyond the terminally ill to devaluing the lives of the elderly, infirm, disabled and other vulnerable groups who would be denied access to life under assisted suicide.  Since 1942, Switzerland has allowed assisted suicide if the motive is not selfish, and has even applied assisted suicide to the mentally ill. In 2001, the Netherlands legalized both assisted suicide and active euthanasia in cases of “hopeless and unbearable” suffering from serious medical conditions and considerable pain. In 2002, Belgium followed the Netherlands.  In 2009, Luxembourg legalized assisted suicide and active euthanasia for the terminally ill and those with “incurable diseases or conditions.” Since 2010, a citizens group in the Netherlands has campaigned for “Out of Free Will” initiative to extend assisted suicide for people over 70 years of age who feel “tired of life” (http://www.rnw.nl/english/article/right-die-elderly-back-centre-dutch-debate).

http://howtodieinoregon.com/

Those who support assisted suicide are primarily white people who are accustomed to power and privilege in their lives, and they want autonomy/control over how to die.  During Oregon’s Death With Dignity Act’s first 14 years (1998-2011), there were 596 patients who died after taking lethal meds: median age was 71 years, 98% were white, 81% had terminal cancer, 90% enrolled in hospice care, and all but 10 had health insurance.  Major end-of-life concerns were:  91% losing autonomy, 88% being less able to engage in activities making life enjoyable, and 83% loss of dignity.  About 23% reported concerns about pain (http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx).  These psycho-social reasons for seeking assisted suicide suggest that perhaps we need to create more compassionate and supportive environments to dignify terminally ill persons? 

States, which represent society’s rights for the common good, should not legalize assisted suicide to benefit the rights of individuals in this elite group.  Doing so is dangerous because we live in a society of growing socio-economic inequality and prejudice in which the delivery of health care in a profit-driven system already creates disparities in treatment and pain control.  If vulnerable groups aren’t even getting health care they need while living, it’s doubtful they’d get more sensitive treatment when they’re dying.  It is unconscionable to talk about legalizing assisted suicide when low-income persons do not have access to comprehensive medical care including pain management and hospice care.  Putting the lives of so many vulnerable people at risk for the possible benefit of an elite group is unacceptable.

Individual patient autonomy/choice is an illusion.  In reality, assisted suicide is open to abuse by doctors and health insurance companies under financial pressure to contain costs of caring for the terminally ill.  In 2008, reports surfaced that the state-run Oregon Health Plan doesn't cover life-prolonging treatment like chemotherapy unless there is a better than 5% chance it will help the patients live for five more years; but it covers life-terminating assisted suicide, defining it as a means of “therapeutic treatment” or providing comfort, no different from hospice care or pain medication.  In its denials, Oregon Health Department informs patients about the availability of physician-assisted suicide; cancer drugs cost $3K-$6K per month versus lethal meds cost $35-$50 for one-time use (assuming no complications like vomiting)(http://abcnews.go.com/Health/story?id=5517492).  Under these pressured circumstances, can a patient truly exercise autonomy when given a “choice” between an offer of fully-paid assisted suicide and alternative of no affordable medical treatment?

Further, this loss of autonomy justification for assisted suicide is disturbing, especially to persons with disabilities.  The late SFSU Professor Paul Longmore wrote about his outrage over a state’s refusal to fund independent living for persons with disabilities, yet its willingness to support their assisted suicide (http://www.raggededgemagazine.com/archive/p13story.htm).  Where are our priorities when a state supports so-called Death with Dignity, but not Life with Dignity and compassion for all persons? 

Longmore provided this testimony against assisted suicide before the California Assembly, suggesting that tolerance of death for persons who live years with disabilities stem from fear and societal prejudice, and the need to reframe what autonomy and dignity means to replace any shame of needing help (http://www.independentliving.org/docs5/longmore1592.html): 

“Fear of disability typically underlies assisted suicide. All but one Oregonian who died under that state's law feared, not pain, but losing autonomy or control of bodily functions. The advocates play upon that horror of ‘dependency.’ Said one, ‘Pain is not the main reason we want to die. It's the indignity. It's the inability to get out of bed or get onto the toilet....’ [People]...say, 'I can't stand my mother - my husband - wiping my butt.' That's why everybody in the movement talks about dignity.  If needing help is undignified and death is better than dependency, there is no reason to deny assisted suicide to people who will have to put up with it for 6 or 16 years, rather than just 6 months. Not that we favor assisted suicide if it is limited to terminally ill people. We simply want to ask, has this country gotten to the point that we will abet suicides because people can't wipe their own behinds?”  

Many people fear the three 3 D’s—Disease, Disability, Death—which has an upside of causing us to develop humility over these common experiences, forcing us to face the Big Questions about the meaning and value of life.  If this makes us live with more purpose and intention, then maybe this unlocks the key to successful aging.

Charting new frontiers in aging at GSA

Had a blast attending my first Gerontological Society of America (GSA) Annual Scientific Meeting in San Diego (http://www.geron.org/annual-meeting)!  Upon arrival, I was briefly distracted when I (foodie that I am) learned that the 9^th annual San Diego Bay Wine & Food Festival was taking place at the same time . . . but there was no time to discreetly frolic and detour because our GSA meeting was jam-packed with events scheduled from 6 am until 10 pm:  symposium and poster sessions, breakfasts and section business meeting lunches, award presentations and receptions, evening interest group meetings and dinners, film screening, mentoring and networking, exhibit hall visits, etc.

San Diego Welcomes signs: International Foundation of Employee Benefit Plans conference ending just as our GSA meeting was beginning seemed to represent my own career transition from employee benefits to gerontology!  I hold a Certified Employee Benefits Specialist (CEBS) designation from International Foundation and the Wharton School, so I’d attend the annual conferences as part of my continuing education.  Since my previous career involved helping people with retirement security, the next logical step seems to be helping people during their retirement with all the issues that arise with aging--including their own retirement income crisis due to the declining three-legged stool (Social Security + employer-sponsored pensions + personal savings), increasing health care costs, longer life expectancies, etc.

 

Buffet of rainbow-colored ribbons:  Gerontology is an interdisciplinary field representing BS (Biological Sciences-orange), BSS (Behavioral & Social Sciences-green), HS (Health Sciences-blue) and SRPP (Social Research, Policy & Practice-red). 

Ribbons for my name badge: New Member (gold), SRPP (red), ESPO (Emerging Scholar and Professional Organization-purple) and Award Winner (yellow).

President’s Welcome Reception:  spotted Bobbie Yee, my aunt’s high school classmate who played matchmaker between my aunt and her cousin.  Bobbie was bridesmaid and I was flower girl at their wedding several decades ago!  Bobbie was also my introduction to the study of gerontology (“what are you studying?” I remember asking).

Exhibit Hall Opening & Poster Session:  this eye-catching poster on alcohol use in Stockholm displays the colorful fusion of arts & sciences.

ESPO Breakfast & Community Meeting:  immediately followed New Member Meet & Greet so I enjoyed a second breakfast at Marriott :-)  My attendance here was mandatory to receive Carol Schutz Award.  Thank you GSA and my accommodating SFSU professors for excusing my absence from classes last week so I could attend this awesome meeting!

President’s Opening Plenary Session:  GSA President Nancy Whitelaw told us that this year’s meeting was her 40^th!  Wow, she also mentioned there were 3,600 registered attendees, including 600 international attendees from 30 different countries!

GSA Executive Director James Appleby: great man who signed check for my award, thank you!

Keynote speaker James Fowler:  UC San Diego Professor of Medical Genetics and Political Science and author of Connected: The Surprising Power of our Social Networks and How They Shape Our Lives, discussed the social spread of obesity, smoking and happiness.

Autograph opportunities with gerontology authors

Breaking the Social Security Glass Ceiling: A Proposal to Modernize Women’s Benefits (SRPP) was chaired by Carroll Estes, author of Social Policy & Aging: A Critical Perspective (textbook used in my Aging & Social Policy class).  Symposium was based on a report co-authored by Estes at http://www.iwpr.org/publications/pubs/breaking-the-social-security-glass-ceiling-a-proposal-to-modernize-womens-benefits

How to Live on When Control Fails (SRPP):  Harry (Rick) Moody, author of Aging: Concepts and Controversies (textbook used in my Aging in Multidimensional Context class) told us this was really a Humanities session.  Instead of focusing on autonomy and control, he said the issue should be on how to provide dignity.  I highly recommend subscribing to Moody's free e-newsletters at http://www.hrmoody.com/newsletters.html

SFSU professors take the stage

What Will It Take to Care for a World of Older Women? Office of Women’s Health (OWH) Senior Advisor Mary Worstell, OWH Deputy Assistant Secretary Nancy Lee and SFSU Gerontology Program Chair Darlene Yee-Melichar held listening session to obtain input on access to care, health literacy, public-private partnership and the budget.

Research Strategies to Create an Age-Friendly World One Community at a Time (SRPP): SFSU Gerontology Professor Anabel Pelham led efforts with students to have Los Altos and Los Altos Hills designated as age-friendly cities by the World Health Organization (WHO).  She highlighted the need to involve all stakeholders and to emphasize that age-friendly is “good for all generations.” 

Aging in Asia:  SFSU Social Work Professor Rashmi Gupta started this interest group. Seoul, Korea will host 20^th IAGG World Congress of Gerontology and Geriatrics meeting next year.  San Francisco will host IAGG in 2017 (http://www.iagg.info/news-iagg?page=1)! In the meantime, we can work to have San Francisco join the WHO Global Network of Age-Friendly Cities at  http://www.who.int/ageing/publications/Age_friendly_cities_checklist.pdf.

Today & the future

Honoring Contributions of Elaine Brody: “Women in the Middle” Revisited (BSS):  “Women in the Middle” refers to daughters, who are the main caregivers of elderly parents, caught in the middle to competing demands in their roles as mother, daughter and employee.  90-year old Brody mentioned testifying in Capitol Hill, before she retired 30 years ago, and asked why today’s gerontologists are no longer doing the same?  (Read her insights on being a "very, very old" gerontologist at http://www.geron.org/uploads/documents/AnInsider'sPerspective.pdf)

ESPO/AGHE: Exploring Post-Graduation Opportunities (HS):  listening to recent graduate Tara McMullen discuss working at Centers for Medicare and Medicaid inspired me to consider returning to the federal government to do policy work, which has such potential to make a huge impact on society.  But this seems to depend on who's in power and the prevailing view of government's role.  I previously worked at the U.S. Department of Labor under Secretary Robert Reich during the Clinton Administration’s first term (which enacted the Family Medical Leave Act, attempted health care reform and endured the federal government shutdown/Contract with America).

 

What Future for Social Security? (SRPP):  Moody (again, this time playing talk show host) with Andy Achenbaum and Larry Polivka.  Moody announced that he would be retiring from AARP and distributed copies of its publication, The Future of Social Security: 12 Proposals You Should Know About (http://www.aarp.org/work/social-security/info-05-2012/future-of-social-security-proposals.html).

Old Guys Rule ("The older I get, the better I was") t-shirts were a common sight in San Diego! 

These are just a few highlights from last week's GSA meeting.  Hope to cover more in upcoming postings so stay tuned.

Senior moment

When I tell people that I’m studying gerontology, some people will look puzzled, “What are you studying?”  After I explain that gerontology is the study of aging, they continue to look puzzled, “Why?”

Gerontology program representatives recruit students with dazzling statistics about career opportunities to prepare us for the Silver Tsunami:  since the baby boomers began turning age 65 last year, 10,000 people will turn 65 every day for the next 20 years.  By 2030, almost 20% of the U.S. population will be age 65+ (http://www.agingresearch.org/content/article/detail/826,
http://www.careersinaging.com/careersinaging/why.html & http://www.un.org/en/development/desa/news/nocat-uncategorized/un-urges-countries-to-address-needs-of-ageing-population.html). 

My reasons for studying gerontology are more personal:  growing up the youngest in a multi-generational household, I’ve always valued the “been there, done that” wisdom of elders and enjoy their company.  Our lives are enriched when everyone can “age in community” rather than be sent away to institutions (nursing homes) where they become invisible.

I think my defining senior moment (“aha, I want to work with seniors”) came to me just a little over a year ago after I attended this inspiring rally with senior advocates to urgently save Adult Day Health Care (ADHC). 

  ADHC rally:  “We won’t go to a nursing home!”

Thanks to “fiscal conservative” Mayor Jerry Brown, a 71-year old senior, Adult Day Health Care (ADHC) will lose its funding as a Medi-Cal benefit, effective December 1, 2011.  Statewide, this funding loss would impact 310 ADHC centers that serve about 37,000 fixed-income seniors and adults with disabilities (AWD), who would be forced into costly institutional care (nursing home) or staying at home alone until their health deteriorates into emergency room visits or hospitalizations.  San Francisco, which has the highest proportion of seniors and AWD in the state, would see the closure of ten ADHC centers affecting thousands of current and future patients without personal choice to safely continue living in their homes (“aging in place”).

Rally to stop elimination of ADHC

On Thursday (October 20, 2011), I attended a noon rally at City Hall to Save ADHC.  It was a well-organized event, almost theatrical, that started on time, provided seats and refreshments for elders and AWD, featured the requisite sound bites by local politicians (including four mayoral candidates), followed by powerful personal narratives from ADHC participants and caregivers, and covered by TV stations.  Like members of a studio audience, we applauded louder when signaled by peppy conductors positioned at each side of the stage.

Politicians speak first

Department of Aging and Adult Services (DAAS) Executive Director Anne Hinton introduced Mayor Ed Lee, who spoke about ADHC serving our most vulnerable population—elders and AWD—and how taking away ADHC would also burden working families who rely on ADHC so they can go to their jobs to support their elders.  Then he announced plans for consideration at next week’s Board of Supervisors meeting to release funds (undisclosed amount, but later revealed in press release to be $3.4 million) from a reserve to cover ADHC effective December 1.

Afterwards, Supervisor Eric Mar stepped up to declare this memorable sound bite:  “We are an aging City! We are a City that ages friendly!”  Next came Supervisors John Avalos and David Chiu, both mayoral candidates.  Then Bayview ADHC Director Cathy Davis led a rousing chant, “We won’t go to a nursing home!”  We heard from an aide to Supervisor Jane Kim (no-show due to illness) followed by Senator Leland Yee, who reminded us that he previously worked at On Lok and was the only Democrat who voted not to cut ADHC funding. 

ADHC women & caregivers

Then finally we got to hear from the real stakeholders:  ADHC participants and their caregivers – all women (who tend to outlive men)!  Caregivers did double duty as translators for three elderly immigrants from Philippines, Ukraine and China.  Each spoke about how ADHC helped transform their lives by offering health care, meeting place for socialization, exercise therapy, social services, etc. after experiencing depression, isolation, multiple chronic health problems from the loss of a spouse and accidents that limited their ability to perform ADLs (activities of daily living).  

The highlight was listening to a woman, standing beside her silent mother who was holding Avalos for Mayor campaign lit.  This daughter described each morning’s routine at home when she prepares to send her mother to “school” (what her mother calls Bayview ADHC) so she can go to work.  From the time her mother wakes up until the 9 am bus arrives to pick her up, the mother continually asks, “What am I supposed to do today?” though the daughter repeatedly responds, “You’re going to school today.”  The daughter told us, “You see, my mom has Alzheimer’s disease.  Can you imagine a day with my mom at home by herself or at a nursing home?”  She said that her mother could do all the things she didn’t know how to do, and she remembered all the times her mother stood strong for her, so now she was going to stand strong for her mother.  At this point, I got all choked up at this model of Confucian filial piety and wanted to excuse myself from the masses so I could bawl out in private, but then . . .

ADHC anthem

Hene Kelly, who represents 900,000 seniors from California Alliance of Retired Americans (CARA), told us that other cities won’t pick up ADHC, but San Francisco is different because we care about all; Governor single-handedly cut ADHC and can reverse it; instead, he proposed a “transition plan” but nothing to date, and December 1 is coming soon.  Then, Hene broke out into the following song, which we sang back to her line by line in People’s Mic fashion:

Everywhere we go
People want to know
Who we are
So we tell them
We are the seniors
Mighty seniors, mighty seniors
Fighting for health care

Fighting for respect

Watch out, we’re going to win health care
Adult Day Health Care is a right

Get out of our way

Give it back to us!

Jaywalking & wheeling to Governor’s office

About 25 of us (including a Bay Citizen reporter and photographer—separate positions, while I assumed both roles for this coverage!) followed James Chionsini of Planning for Elders, who led a march to the Governor’s office to present a 3” stack of signed petitions.  As we made our way from City Hall to Governor Brown’s office, many held up eye-catching STOP signs that served a dual purpose to declare our message and STOP traffic when the red light suddenly came on while we were still crossing McAllister Street!

“STOP ADHC Elimination”

“STOP Dissing Grandma”

“STOP This is not how we treat our elders”

Winning signs

State Building Security wouldn’t allow us to bring in signs so we left them planted outside.  While waiting in line to go through security check, I judged the signs as contestants and decided on the following winners:

Most effective message to support cause:

“Honk to save ADHC”

“NO ADHC means taking Independence & Dignity away from our frail, Elderly and Disabled”

Most informative signs:

“Gov. Brown: Adult Day Health Makes $ense . . . “

“Average Daily Cost Assisted Living $153 Nursing Home $308-435 Emergency Room Visit $1200+++ ADULT DAY HEALTH $79/day YOU DO THE MATH”

15 minutes of fame: Occupy Governor’s Office!

James explained that we didn’t have an appointment so we weren’t all that surprised when the receptionist behind a glass window told us that the Governor was not in San Francisco to receive us and the signed petitions.  Hene made a cell phone call using speaker phone to the Governor’s Office in Sacramento, listened to a recording of menu options before reaching a constituent affairs representative named “John.”  The Governor was not available to come to the phone so Hene said she would send a letter with the petitions; “John” said the Governor’s office would respond in 90 days; some shouted, “We need a response in a week!”   Hene said we would follow-up in one week with “John.”

Then we politely exited and vans were waiting outside to escort the senior and AWD activists.  Not quite the Power of 504 demonstration (when AWD occupied the old San Francisco federal building for 26 days in 1977 until the fed agreed to implement regs to enforce the 1973 Rehab Act), but I walked away with a “Power to the People” feeling. 

Postscript:  Prior to December 1, 2011, the State reached a settlement with advocates to allow ADHC centers to provide services until the launch date of the new Community-Based Adult Services (CBAS) program (http://www.californiahealthline.org/articles/2011/11/18/state-reaches-settlement-to-establish-new-version-of-adhc.aspx, http://www.californiahealthline.org/capitol-desk/2012/10/program-launches-for-seniors-disabled.aspx)

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:

Action Continuum to Confronting Oppression: http://www.stepupprogram.org/docs/handouts/STEPUP_Action_Continuum.pdf

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

Through Deaf Eyes: http://www.pbs.org/weta/throughdeafeyes/