As a gerontologist
advocating for community living, I look to disability culture and laws to promote access and inclusion for people of all ages and abilities. Last month,
the Leadership Conference on Civil and Human Rights issued its support of the Disability Integration Act:
“Community
integration of people with disabilities is a deeply important civil rights
issue. The Disability Integration Act builds upon the historic Americans with
Disabilities Act, and the promise of the U.S. Supreme Court decision in Olmstead v. L.C. It would
provide people with disabilities with the real choice and opportunity of living
and participating in the community without discrimination through the
strengthened use of long term services and support through an increased
commitment of federal funds for those services. We urge Congress to enact this
vital legislation as soon as possible.”
The
annual Pacific Rim International Conference on Disability & Diversity, held
in Honolulu, is
one of my favorite learning, advocacy and networking destinations. The conference programming “walked the talk”
in presenting disability as diversity, as well as legal, human and civil rights
issues. This month I returned to volunteer at this empowering conference,
now in its 33rd year and organized by the University
of Hawaii’s Center on Disability Studies (CDS) around the theme SustainAbility. Some welcomed changes this year:
- Fall event (during
Sharktober!) instead of springtime
- Much closer to conference
co-venue Hilton Hawaiian Village
in Waikiki, The Modern Honolulu replaced Hawaii Convention
Center as co-venue for first two days of the conference.
- Instead of my usual walking
from my parents’ home to the conference sites,
I took advantage of TheBus’ new (effective October 1) 1-day pass at $5
for unlimited rides all day!
- This year’s conference included
the first-ever Book Pavilion (Monday and Tuesday) and all-day Aging with
Dignity Forum (Wednesday), which were accessible to the general public for
$20 and $15, respectively. As conference
volunteer, I received complimentary registration (including meals) and
behind-the-scenes access to presenters and staff!
Aloha!
Over 600
people registered in advance, and nearly 1,000 people showed up when the conference began on October 9 (aka Discoverers’ Day in Hawaii since
1988) with a sumptuous breakfast buffet of local favorites (papaya, pineapple, fried rice,
veggie scrambled eggs, Portuguese sausage, and guava nectar) at Hawaiian Village.
(Hawaii’s local food system was self-contained until
tourism exploded in Hawaii
during the 1970s. Today, Hawaii exports 80% of
its food production,
and imports 90% of its food consumption.
During last year’s World Conservation Congress held in Hawaii Convention Center, Hawaii Governor David Ige pledged to double local food production as part of Sustainable Hawaii Initiative.)
CDS Director Patricia Morrissey shared stage with ASL
interpreter, presenting Opening Remarks.
She asked that we take-away 3 things from our attendance: learn
strategies that we can apply to our life for happiness and satisfaction, make
new friendships that blossom in collaboration, and find the true
interconnectedness of all things.
Conference
organizer Charmaine Crockett joked that she didn’t have anything inspiring to
say, but housekeeping that included conference highlights like planned outdoor
film screening on beach (swimming pool)!
Sara
Banks presented E Ola Pono Campaign, a statewide initiative to promote peace and pono (righteousness) in Hawaii
schools.
Entertainment by Hawaiian
singer-songwriter Amy Hanaiali’i, who is known for reviving the Hawaiian tradition of female falsetto singing and performing
duet of John Lennon’s “Imagine” before Hawaii Governor Neil Abercrombie signed
2013 Hawaii Marriage Equality Act into law.
While stationed
as room monitor on 2nd floor of The Modern Honolulu, some attendees
explained they had difficulty finding direction of meeting rooms because this wallpaper
appeared like “zebra” print to them. Actually,
tropical leaves were hand-painted on this wallpaper.
Books
In What’s Your Story? A Masterclass on Memoir,
Jessica Fechtor talked about her best-selling memoir, Stir:
My Broken Brain and the Meals that Brought me Home (2015).
Wow!
Charmaine distributed copies of Stir,
courtesy of Jessica’s publisher, to attendees!
James Doty, MD, Director of the Center for Compassion and Altruism Research and Education
(CCARE) at Stanford University School of Medicine, shared his life story in Building a Culture of Empathy and
Compassion, based on his New York Times best-seller, Into the Magic Shop: A Neurosurgeon’s Quest to Discover the Mysteries
of the Brain and the Secrets of the Heart (2016). Despite
his adverse childhood experiences (poverty, alcoholic father, depressed and
suicidal mother, etc.), his life changed at age 12 when a kind earth mother in
a magic shop taught him techniques on how to relax and breathe, and tame his
mind. He later learned that real
happiness is connection, caring and compassion.
Instead of tribalism that creates the “other,” we need to see similarities
and give dignity to all so we recognize “other” as “you.”
Amy Coleman, MD, presented
on Be Your Best Self: How Your Symptoms
Can Be Both a Mask and a Set of Clues, and then gifted signed copies of her
book, Discovering Your Own Doctor Within
(2016). She suggested self-care
strategies like being in the moment, connecting with nature, deep breathing, prayer, etc.
Exhibitor Benetech Senior Education Program
Manager Christine Jones demonstrated Bookshare, which provides online access to
books on a wide variety of software
apps, tablets, smartphones, assistive technology devices, etc. Last month, Bay Area-based Benetech partnered with California State Library to make over 565,000 ebooks available free to patrons
who “read differently” (i.e., cannot read printed books due to a disability,
such as dyslexia, blindness, low vision, or certain mobility impairments).
Nina G, Bay Area-based stuttering comedian with Comedians with Disabilities Act and dyslexic writer of Once Upon an Accommodation: A Book about
Learning Disabilities (2013), was interviewed by Matthew Mock in Standup Comedy and Disability: Art, Social
Activism, or Pure Nonsense (or maybe a bit of all three!). Nina G pointed out that the late actress
Marilyn Monroe developed her breathy voice to hide her stuttering. But Nina G decided to develop her own voice when she started stand-up comedy, billing herself as America's only stuttering female comedian, and became a disability activist in the process.
Entertainment,
Food & Posters
Mihana Aluli Souza provided entertainment during 5th annual evening poster session and
party.
175 pound whole pig from nose-to-tail was soaked
in brine for 3 days, then roasted for 4 hours.
Morning
poster session breakfast buffet at Modern Honolulu
Film
Fest
Filmmaker Bradley Jackson and Film Fest curator Laura Blum engaged in Q & A with audience after sneak preview of Dealt, a documentary about 62-year-old Richard
Turner, one of the world’s top card magicians who is completely blind due to
macular dystrophy. Bradley spent 3-1/2
years with his subject to create a thoroughly engrossing 85-minute film. Because Richard did not want to be treated
differently, he refused to learn Braille or use a white cane, and he never revealed his
visual impairment to the public. He was determined to be recognized for his accomplishments on merit, always exerting himself in tactile activities like practicing with cards
16 hours a day and earning a black belt in karate. Richard had the support of his wife, who
disclosed that she sometimes felt like his seeing-eye dog, and his son Asa
Spades, who worked as his assistant. Spoiler alert: After Asa left home for college, and as Richard mentored a girl
who is blind, Richard no longer kept his blindness a secret and connected with
his sister who showed him how to use assistive technology and a service dog.
On World Mental Health Day,
the Film Fest featured Wider Film Project’s God Knows Where I Am —a poignant
documentary based on the diary of Linda Bishop, who struggled with schizophrenia
and periods of homelessness, isolating herself in an abandoned farmhouse where
she ultimately died of “starvation with dehydration associated with psychiatric
illness,” at age 52. The documentary was effective in showing Linda’s
perspective for viewers to respond with empathy, and I was disturbed how often
the “safety net” of hospital, psychiatrists and family tried to force Linda to
take psychiatric medications, as though other treatment options (without
disabling side effects) were not offered.
“Implicit in the doctrine of informed
consent is the notion that before agreeing to take medication patients should
be aware of the nature and course of their own illnesses. In balancing rights against needs,
though, psychiatry is stuck in a kind of moral impasse. It is the only field in
which refusal of treatment is commonly viewed as a manifestation of illness
rather than as an authentic wish. “
“But you can’t exercise free will when the mind is not free,”
said filmmaker Todd Wider, who is also a surgeon.
Dementia
Janet Gibson, PhD, presented Power of Art: Power of Us Talking Out
Otherwise Dementia, about the
need for dementia stories that go beyond symptoms of disease (loss of selfhood)
to celebrate the creativity from dementia, as suggested by Kate Swaffer (former nurse turned activist after being diagnosed with younger onset frontotemporal dementia) and Maureen Matthews’ To Whom I May Concern (interactive theater program designed to give
voice to people with dementia and understanding to the people around
them). Check out Janet’s blog about
performance of age and dementia in everyday life, at https://stageing.wordpress.com/.
In Dementia
Blog: Writing about Illness, UH English Professor Susan Schultz, PhD, read excerpts from her two books based on her blogging about her mother’s dementia. She described conversations with her mother
like speaking ESL, and Alzheimer’s experience as a second childhood.
Diversity, Empathy & Built
Environment
ADA compliance consultant
and trainer Nanette Odell, PhD, facilitated Solving the Diversity Puzzle. Attendees put together colorful jigsaw pieces
to form letters spelling out D-I-V-E-R-S-I-T-Y.
- Matthews
spoke about the role of community development and advocacy to create
environments that work for everyone by addressing the barriers, such as
commitment (signatory to UN Convention on Rights of People with Disabilities),
legislation/regulation (building act and code stuck with minimum
standards, need to incentivize to go beyond), cost and general attitudes
(more about affordability v. accessibility, complacency and/or
complicity), etc. He noted that Singapore, also a signatory to UNCRPD,
had clear regulations on accessibility for built environment.
- Leake
talked about visitability, which was repeated during Aging with Dignity
Forum the next day.
Aging
with Dignity Forum
Scott Spallina,
who heads the Honolulu Office of the Prosecuting Attorney’s Elder Abuse Justice Unit, presented on Elder Abuse through
the Victim’s Eyes: Why these Crimes Leave Seniors Devastated and Why Elders are
Targeted. He is on-call 24/7 to
provide rapid response, and supported by 4 deputy attorneys, 2 staff and 2
interns.
In Honolulu,
the most common form of elder abuse is financial exploitation, and #1 abuser is
family. Abuse is seldom reported due to
embarrassment—victimized parents turn the other cheek to keep peace in the
family. Seniors are targeted because they have more assets (controlling more
than 70% of nation’s wealth), viewed as often lonely, and thought of as
trusting.
- Warning
signs: isolating victim, secrecy, urgency, emergency/tragedy, loneliness,
too good to be true.
- Prevention
tips: never give personal information to stranger, screen calls, lock
mailboxes/shred mail, estate planning.
Older
Adults with Disabilities: Interests, Needs and Concerns Aisha Bonner-Cozad of
AARP presented on Opinions and Experiences of Family Caregivers who have a
Disability and Older Adults with Disabilities: Behaviors that Increase the Risk
of Becoming an Internet Fraud Victim
Cassandra Cantave of AARP presented on Age-Friendly Communities for All,
concluding with following areas of opportunity: separate pathways for
bicyclists and pedestrians, sidewalks in good condition and accessible for
assistive mobility devices, well-maintained streets, enforced speed limits,
well-maintained and safe low-income housing, affordable housing options,
activities that are affordable to all residents, and activities specifically
geared towards older adults.
AARP Hawaii
State Director Barbara Kim Stanton talked
about AARP Hawaii's work in advocacy (protect Social
Security, Medicare, pensions, kupuna care, age-friendly), education (research), and community
events. She provided Hawaii data on topics presented by AARP
national presenters:
- Retirement
security: Due to Hawaii’s high cost of living, Barbara said her accountant advised her to work 2 more years before
retiring, and Hawaii has highest number of women in workforce; 93% of
Hawaii employers are small businesses and many do not offer retirement
plans due to administrative burden, so AARP advocating for Work & Save via payroll deduction to help
workers save for retirement. (See "Americans are retiring later, dying sooner and sicker in-between.")
- Women’s
financial security: Average
caregiver is age 60 and female with less earnings, less Social Security;
AARP Hawaii offers Women &
Money class, encourages bringing daughter and lets “men sneak in.”
- Long-term
care: Hawaii has highest need, not enough beds; people are out sicker and
quicker, more medical tasks like wound care, catheter care, transferring "dead weight"; effective July 1, 2017, Hawaii CARE Act requires discharge instructions to caregiver at home.
- Caregiving
support: Caregivers say caregiving was the most special time, no regrets
but own life put on hold, hardest to care for people with Alzheimer’s; AARP Hawaii’s annual
Caregiver Conference attended
by 1,000 yet there is wait list, often lifeline to sandwich caregivers who
request transportation and personal care (bathing, hygiene) assistance.
- Safer
streets: Hawaii
has nation’s worst infrastructure and senior pedestrian fatality rate; AARP Hawaii has been working to get countdown traffic lights at 14
deadliest crosswalks. (This month,
Honolulu became the first in the nation to allow police to fine
pedestrians up to $35 for viewing electronic devices while crossing the streets —a measure, inspired by teenagers' concerns about their peers, that has been criticized for blaming the victim for pedestrian deaths.)
- Age
in place: AARP Home Fit Guide and Age-friendly Honolulu.
On my own for lunch, so hopped on TheBus to Ala Moana Shopping Center Food Court
for Yummy Korean vegetable plate at $10.99!
The Built Environment for All:
Charting the Course for Age-Friendly Communities
Christy Nishita, PhD, of UH Center on Aging, provided
overview of Honolulu’s Age-Friendly Initiative. By 2030, 24% of Hawaii
residents will be 65 (versus 21% in
rest of U.S.), and Hawaii has longest healthy life expectancy (65-year-old Hawaii resident can
expect another 16.2 years of healthy living).
In late 2015, an Action Plan was completed and implementation began.
Disparities
in Life Expectancies ranging from 86.1 years for Chinese to 72.8 years for Samoan.
- Only
4 of about 100 Honolulu
rentals are accessible
- Many
houses in rural Hawaii
are raised above the ground
- Many
low-rise apartment buildings are walkups
CDS recommended that Hawaii
follow the lead of Vermont
State in requiring that
all new homes be built to be visitable:
- At least
one zero-step entrance
- Interior
doors with at least 32” of clear passage space
- At
least half a bath that is accessible on the main floor
- Reinforcement
in bathroom walls for future grab bar installation
- Space
to maneuver a wheelchair in food preparation areas
- Light
switches and electrical outlets within comfortable reach for all
Traffic systems engineer Mike Packard discussed Honolulu Complete Streets to “improve safety, accessibility and comfort for all users, encourage physical
activity, and reflect community needs and character.” During Q & A, I asked what was being done to pave sidewalks for people who use
walkers and wheelchairs. Mike explained
that Honolulu’s older neighborhoods (Kaimuki, Manoa, Kailua) lack sidewalks due
to ordinance 30 years ago requiring property owner to pay cost of new
sidewalks. Now a bill provides that the
City may proceed to pay full cost of sidewalk construction.
Curt Kiriu, Certified Aging in Place
Specialist (CAPS) and caregiver of his father, presented on Homes for Independent Living.
He defined independent living as being in control of how things are
done, as opposed to doing things by yourself.
Accessibility to-do: Wider ramp (left photo taken in Chinatown) and paved sidewalk (right photo taken in Makiki Heights) needed.
Bay Area gerontologist Ann Colichidas
presented on Mind Matters, focusing
on lifestyle interventions: healthy diet, exercise, stress reduction,
supplementation, and social engagement.
Ann Colichidas, Qi Gong Grandmaster Effie Chow and Terry Shintani performed choreographed dancing, which is great workout for mind, heart and body.
Terry Shintani, MD, MPH, JD, presented his New Paradigm
of Health, based on his Peace Diet
(2014), starting with more natural approaches to health like the environment,
nutrition, lifestyle, herbs and supplements.
He emphasized holistic wellness over the medical model’s focus on dis-ease
prevention with harm-aceuticals.
Dementia-friendly
Geriatrician
and author G. Allen Power, M.D. has noted that people with dementia are the
“only group of people who are told that they cannot live around the rest of us,
and the only people whose needs we will not learn to accommodate in an
integrated long-term care setting.” He
further observed that people with dementia “blossom when moved back to
integrated environments,” instead of being stuck in self-fulfilling prophecies
that are often adopted when they are segregated and treated for their deficits.
Instead
of stigmatizing and isolating people with dementia, anyone can become a
Dementia Friend by showing empathy (understand what it’s like to live with dementia) and more compassion (“empathy in action”). Dementia Friends can get involved in building
dementia-friendly communities,
a collective effort that involves public awareness and education to better
understand, respect and support the unique needs of people with dementia so
they feel more a part of the community.
Hawai'i Alzheimer’s Disease Initiative (HADI), a project of the UH Center on Aging, provides a wealth of resources (Memory
Care Navigators, Savvy Caregiver program, memory clinics, website, etc.) to strengthen
dementia-capability in communities.
One of
the HADI resources was training by Dorothy Colby, who presented
“Normal vs. Not
Normal Aging” workshop based on occupational therapist Teepa Snow’s Positive Approach to Care (PAC) series,
with trainees. (Note Spam musubi on far
right table. In some Honolulu
stores, Spam cans were stored in locked plastic cases due to Spam heists!)
Dorothy is Hawaii’s certified PAC trainer and Administrator at Hale Ku’ike (“House of Understanding”) which serves memory care residents in Nu’uanu. Based on a social model, Hale Ku’ike provides a home-like setting that promotes freedom, choice and familiarity: residents have unrestricted access to walking paths and seating in healing gardens, daily programs (therapeutic music, Tai Chi, aromatherapy, etc.), involvement in the natural rhythms of everyday life (gardening, meal preparation), live-in trained service dogs (labradoodles), meals prepared from scratch.
This workshop
included handout and video clips of Teepa acting out scenarios. Workshop was mostly interactive with role-playing on how to approach someone
with dementia based on how humans take in data using senses in this specific
order:
1. what you see (visual) – most
powerful sensory input
2. what you hear (auditory)
3. what you feel/touch (tactile)
4. what you smell
5. what you taste
Therefore,
do not touch person with dementia until you’ve done a visual/verbal. Since people with dementia have difficulty
initiating, use cueing to announce what will happen next. Don’t do “to” someone, but do “with” someone
as a partner—for example, position side by side, hand under hand to support with
activities like brushing hair or teeth.
Workshop
participants graduated with certificates.
Workshop
took place at 15 Craigside (“Live your life, your way”), a continuing care
retirement community (independent living, assisted living, skilled nursing) in
Nu'uanu, located opposite Oahu
Cemetery. Entrance fees range from $176,100 (studio in
3rd floor, Makai or Oceanside)
to $429,000 (corner 1-bedroom on 12th floor). Entrance fee costs are lower on Makai up to 8th
floor, than Mauka or Mountainside).
Monthly service charges range from $3,280 (1 occupant in studio) to
$6,133 (2 occupants in 1-bedroom).
Craigside van reads, “Retirement living within reach”… of cemetery!
Oahu Cemetery, Hawaii’s oldest public cemetery founded in
1844, contains the “most abundant collection of 19th Century grave
art in Hawaii.” Nu'uanu
Avenue sidewalks were among the earliest paved in
1881.
Treetop with crown shyness provides pretty shelter while waiting
for TheBus
Perhaps my upbringing in Hawaii made me a nature snob, so I
shudder when I see people with dementia treated like criminals in locked facilities, deprived of access to nature (fresh outdoor air, sunshine, living plants in
rooms) and natural movements (prolonged sitting, ostensibly to avoid falls, can
impair mobility and actually increase fall risk). Side effects from medications, given to
people who become agitated, perhaps due to boredom of sitting around, further
increase fall risk.
Yet, connecting with and exploring in nature—along with the realization
that we’re part of this larger cosmos—may be the prescription for people, with
or without dementia. The title of Florence Williams’ new book, The Nature Fix: Why Nature Makes us Happier, Healthier, and More Creative (2017) says it all. Albert
Einstein, Nikola Tesla and Charles Darwin walked outdoors to stimulate their mental processes. Even my homebound clients in SROs knew to
seek comfort in nature, enjoying houseplants that also improve indoor air quality (thanks to Meals on Wheels which delivers houseplants, in addition to meals and
disaster kits).
“People of all ages and abilities are able to move
about with ease, enjoy Honolulu’s
sunshine and natural beauty, and share the Aloha spirit with one
another.”—Honolulu Age-Friendly City Action Plan’s Vision for Outdoor Spaces and Buildings
Long-term care
Honolulu Star-Advertiser reported a proliferation of controversial Aging in Place (AiP) facilities—estimated anywhere from “dozens” to 200—that have opened
within the past several years in Hawaii.
In this AiP model, residents sign a boarding agreement with a homeowner,
setting a monthly rent; and then a separate agreement with a home health care
company, setting a separate monthly rate.
Sometimes the home and care company are owned by the same person. According to Maile Harada, RN, who advises
operators on establishing AiP facilities,
this
model was “born out of necessity” due to long wait times for the State
Department of Health (DOH) to issue home licenses. DOH’s Office of Health Care Assurance
oversees more than 12,300 residents who live in about 1,700 long-term care facilities. AiP facilities are not regulated, and
limited to private pay, yet costs are similar to licensed facilities at $5,000
to $6,000 per month.