Access and Inclusion: Disability and Diversity

When I learned that the 30^th Annual Pacific Rim International Conference on Disability and Diversity in Honolulu would take place after the last day of classes at SFSU, I decided to go and volunteer to get a behind-the-scenes look at putting together an accessible event for all.  The registration forms offered accessibility requests for assistive listening devices, large print materials, Braille materials, sign language interpreter services and even vegetarian meals!  Presenters received accessibility guidelines developed by Association of University Centers on Disabilities (AUCD), and volunteers received disability etiquette training. 

While speakers and attendees included the usual academics and practitioners, typical at GSA and ASA, this empowering Pac Rim conference also included many persons with disabilities (PWD) and their family members who shared their personal experiences as presenters, attendees, exhibitors, volunteers and advocates – personal narratives and actions can be so powerful! This conference offered so many opportunities for lively engagement—actively listening to voices of PWD in their struggles for self-determination (what do PWD want and how do they want to participate?), as well as Q&A in “Going Deeper with Diversity” sessions. 

Seniors and PWD share similar issues.  Like old age, disability is an aspect of human diversity, as understood within a human rights perspective that calls for inclusion, rather than human pathology as defined by medicine and psychology that relies on individual assessment to decide access to resources with the sometimes unintended effect of exclusion/segregation/marginalization of PWD.  Empowerment entails personal psychological change as well as systems and policies to enable PWD to become active participants.  The value of embracing disability and diversity is creating ways of doing things that benefit all, such as universal or inclusive design features (e.g., curb cuts, sidewalk ramps, signs with light-dark color contrast, etc.), and being free to choose how to express ourselves (e.g., ASL).

This year’s conference theme was Learn from Yesterday, Live for Today, Envision Tomorrow.

Learn from Yesterday

 

While walking 3 miles from my parents’ home to the Hilton Hawaiian Village for the pre-conference’s International Forum, I passed by Hawaii School for Deaf and Blind’s dormitory building which formerly housed the administrative offices of the State Department of Education (DOE), Special Needs Branch, Exceptional Children Section. 

This is where I worked my first full-time job with the Gifted and Talented Specialist, promoting Kids on the Block (using puppets to educate about disabilities/differences) and Very Special Arts Hawaii, during the summer immediately after I graduated from high school.  I myself had been enrolled in my school’s Gifted program, taking Advanced Placement classes.  I also skipped half the day during my senior year to take classes at a nearby community college—thanks to my Tiger Parents who supported this money-saving strategy (as those credits transferred to my undergraduate degree from a private college), though my school counselor and principal believed that I should remain with my peers to participate in homecoming, prom, sports events, etc.  As an introvert, I didn’t appreciate these rah-rah, school spirit activities, but preferred more thoughtful activities like journalism, math league and hanging out with older adults.  Now as a gerontologist, I find one noteworthy affective trait of a gifted child is strong attachments to older friends or an adult figure—which I displayed in abundance; other gifted traits include sense of justice, altruism and idealism, sense of humor, early concern about death, perfectionism, high energy level, and aesthetic sensitivity.  I feel indebted to my parents who supported my decision to leave high school early, so I reciprocate by doing all I can to ensure that they can age in place as they desire. 

Live for Today, Envision Tomorrow 

Bob Stodden, retiring Director of the Center on Disability Studies at the University of Hawaii at Manoa, welcomed participants to the pre-conference's 7^th annual International Forum on the Human Rights of People with Disabilities.  This year’s theme focused on implementation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD).  In countries with life expectancies over 70 years, as in the United States of America, individuals spend on average about 8 years, or 11.5% of their life span, living with disabilities.  As we grow older, we will want more accessible environments.

Charmaine Crockett, Special Projects Coordinator at the Center on Disability Studies and academic Bob’s activist Conference Co-Chair, reminded the audience that the Forum was about dialogue and human rights approach with the #1 vision to end poverty.  One advantage of volunteering was getting to know Charmaine, who inspired me with her career change from finance to human rights! 

Andy Imparato delivered the keynote, Ending Poverty as a Moral and Ethical Imperative: a Human Rights Based Approach.  He described himself as a disability rights lawyer and activist who represents a network of academics as Executive Director of AUCD.  He noted this year marks the 60^th anniversary of Brown v. Board of Education, the 1954 U.S. Supreme Court case that decided separate but unequal violates equal protection.  He said human rights does not depend on a document, and 56% of children age 6-21 with intellectual disabilities are educated separately, though they have a right to be educated in integrated settings.  The global strategy places education at the center as the foundation; according to UNESCO, if low-income persons left school with basic reading skills, then 171 million would be lifted out of poverty.  The CRPD recognizes the inherent dignity and worth of all persons, and Article 24 provides for inclusive education at all levels and lifelong learning.  However, the U.S. is not yet a party to the CRPD because there is a need to convince Republican senators and obtain support from the business community, veterans and religious groups.  (Angola and Burundi ratified CRPD this month for a total 147 ratifications as of May 2014.)

Article 28 provides for adequate standard of living, access to social protection and poverty reduction programs; Article 33 provides for independent monitoring.  Improvements have been driven by PWD and their families to change opportunities and quality of life, and they need to be developed as leaders to become effective advocates.  For example, Special Olympics founder Eunice Kennedy Shriver was motivated by her sister Rosemary who had an intellectual disability, and ADA author Senator Tom Harkin has a brother Frank who is deaf.  Next year marks the 25^th anniversary of the Americans with Disabilities Act (ADA) and 40^th anniversary of Education for All Handicapped Children Act (replaced by Individuals with Disabilities Education Act or IDEA, which provides early intervention from preschool up to age 21).  ADA’s four goals are equality of opportunity; full participation in everyday life; independent living; and economic self-sufficiency. Andy noted that the least progress has been in economic self-sufficiency:  programs like SSI, SSDI, Medicaid and Medicare were designed before ADA, which prevent gainful employment so it's hard for PWD who do not work to be pulled out of poverty.  

Akiko Ito, Chief of the Secretariat for the CRPD, on Making the Linkages: The Convention on the Human Rights of Persons with Disabilities and Disability Inclusive Development.

 

Daniela Bas, Director of Division for Social Policy and Development of UN Department of Economic and Social Affairs, on Global Viewprints: Accessible Tourism as a Tool for Inclusive and Sustainable Development for All, discussed making treaties a reality with societies for all ages and abilities.  She reminded us that 14 years ago, 193 member states focused on Millennium Development Goals, which are to be implemented by September 2015; next focus will be on Sustainable Development Goals (SDG) in post-2015 global development agenda – disability will be mainstreamed to focus on access to transportation, education and employment.  (Daniela previously worked as a travel presenter on Channel 4 in the U.K., where she would show by doing how she traveled as a PWD.)  More than 80% of the population can be considered to have some form of disability – being mobility impaired; pregnant; allergic to animals, food or pollen; overweight; elderly or developmentally disabled or hearing/cognitively impaired; and sometimes invisible like diabetes.  She said there is a need to make stakeholders aware not only of statistics (not enough data) but also know markets, if they are people-centered to benefit people and make profit.  Panel discussion on Inclusive Development: Focus on Inclusive and Accessible Tourism

·        Molly Kennedy and Mark Starford discussed accessible formats that encourage travel, with a focus on plain language and universal symbols (during break, Mark told me about his work with California Coalition for Compassionate Care in creating Thinking Ahead, an advance care planning workbook, for people with developmental disabilities)

·        Jutta Treviranus, Director of Inclusive Design Center, discussed accessibility in a connected world:  she noted that PWD are outliers, the epitome of diversity, and that the biggest barrier in this information age is the tyranny of the average and norm.  Disability is a mismatch between the needs of the individual and the service or environment offered; accessibility is the ability of the system to match the needs of the individual.  Inclusion leads to a virtuous cycle of ideas for adaptability and resourcefulness.

·         Jeremy McGhee, star of Drop IN: Do What You Love documentary, provided a global athlete’s perspective on accessible tourism: his belief that an individual has responsibility to adapt to the world, including willingness to get uncomfortable, rather than expect the world to adapt to an individual to create access.  He spoke from his experience as a sporty thrill seeker who lost use of his legs after a motorcycle accident. 

·        Daniela reminded us that tourism produces jobs to eradicate poverty and promote social integration.

·         Juanita Liu, University of Hawaii Director for the Center for Tourism Policy Studies, discussed the role of research, policy and curriculum development in shaping tomorrow’s inclusive tourism sector:  she helped draft the position paper for International Union of Tourism Organizations (IUTO) providing for right of people to travel; the corollary to everybody has right to work is right to rest, leisure, recreation and travel.  Two years ago, a student researcher concluded there would be 75% increase in annual roundtrips if more accommodations were made.

·        Mike Ellis discussed accessible travel made possible by accessible businesses that integrate cultural sensitivity training:  accurate information, accessibility (e.g., visual caption for deaf, sign language of country, telecommunications relay), available (e.g. 24/7), partnership (National Association of Deaf, Hearing Loss Association, United Cerebral Palsy, etc.) and advice (from customer).

One blind participant shared her experience of traveling with no assistance to complete forms on airplane, touch screen phone and other technology that is difficult for blind.  One participant who works with Australian aboriginals commented that she found discussion on accessible tourism esoteric because so many PWD live in poverty and would find leaving their natural home environment stressful, especially those with acquired brain injury.

The Forum’s binder included the following resources on accessible tourism:

·         European Commission’s Improving information on accessible tourism for disabled people 

·         UN World Tourism Organization’s General Assembly Recommendations on “AccessibleTourism for All” 

·         UN General Assembly’s The way forward: disability-inclusive development agenda towards 2015 and beyond 

Dialogues: Access to a Barrier Free World with Jutta who reminded us that design for excluded/outliers benefits everyone (e.g., FTC forced cell phone makers to make their product accessible to deaf with texting feature), and the greatest global risks are wealth disparity and lack of inclusion: we will sink or swim together in a global community.  

Dialogues: Being a Human Rights Advocate in Today’s World with Ari Ne’eman, President and co-founder of Autistic Self-Advocacy Network, discussed the integrated model that presumes PWD are welcome as a natural progression after mainstreaming (drop-in) and structured programs (call in advance for special accommodation).  The medical model promoted eugenics and institutionalization resulting in isolation and segregation so PWD could not access social and financial capital.  Advocacy needs to ensure disabled voices are at center, PWD in mainstream as role models, and disability mentoring and support.

Call to Action: Mural ALO HA Inclusive Development 2015 with artist Meleanna Aluli Meyer (who is working with Alice Walker on a documentary film about Queen Liliuokalani, Hawaii’s last monarch who was overthrown in 1893 by Anglo-American interests seeking to annex the Hawaiian Kingdom).

My group worked on half of letter O for obstacles and opportunities

Our groups put together letters spelling ALO-HA

Meleanna showed us her own ALO-HA, explaining that the purpose of this group exercise was to draw upon our creativity, imagination and collective visions.

More community building at reception in Bob’s suite

Pac Rim Conference began Monday at ADA-friendly Hawaii Convention Center. Another advantage of volunteering was receiving assignments in the face of overchoice with so many interesting concurrent sessions! On the first day of the conference, I was assigned as room monitor for three keynote talks.

Pinky Miller’s Know Our Story: Life after Lean on Me was based on her dissertation about her life (“being molested can disable a person from being productive”) and the influence of her Eastside High School Principal Joe Louis Clark, who was portrayed by Morgan Freeman in the 1989 film Lean on Me. She said negative circumstances do not dictate your future because you are a life changer.  Mr. Clark was a life changer who impacted the lives of his students and teachers through his leadership strategies: 1) intimidation/accountability, 2) clean-up school, 3) being omnipresent, 4) walk to the right!, 5) removing disruptive students (I wondered whether any acting out behavior might have been a sign of a learning disability or mismatched learning style environment?), 6) enforcing discipline, 7) being a father figure, 8) strong school spirit (sing alma mater), and 9) creating sense of community, garnering support for reform.

In Obstacles and Catalysts for Resiliency: Lessons from the Brain-Body Connection, neuroscientist Sarina Saturn discussed how too much stress can be bad, especially if unpredictable, uncontrollable and chronic.  However, we can fight damaging effects of stress with resilience (the ability to readily overcome challenges), which can be built with prosocial behavior (actions that benefit others, like caregiving, altruism, cooperation) that are associated with feel-good chemicals like dopamine, serotonin and oxytocin; social connectedness is key to bouncing back.

Laura Blum presented on Ten Films That Shook the World: 1) Rashomon (1950), 2) Children of a Lesser God (1986; ASL), 3) Rainman (1988; autism), 4) Do the Right Thing (1989; race relations), 5) Whale Rider (2002; female role), 6) Frida (2008; polio), 7) Slumdog Millionaire (2008; globalization), 8) Brokeback Mountain (2005; robust gay), 9) Missing Picture (2013; genocide) and 10) The Cove (2009; dolphin hunting impact on biodiversity).

Lunch break at rooftop garden                     

Molly Mayo of On-the-Move talked about Natural Partners:  Disability Services and the Sustainability Movement, describing the overlap between social sustainability (processes and structures that work toward social and environmental health) and disability services:  many of the same core principles include equity, diversity, participation, etc.  She also described how disability advocacy work relates to social sustainability: goal of integration and community participation, ensuring equal rights, working towards equal access, self-representation/self-determination, education of community around diversity issues, Individual Service Plan (ISP) process, social health, etc.

Pacific Rim Diversity Now! Mini Film Festival included the following compelling documentaries:

·         Afternoon of a Faun: Tanaquil Le Clercq about a ballerina who was paralyzed from the waist down by polio while still in her twenties and how she adapted by teaching when she could no longer dance.

·         Notes on Blindness 15-minute documentary short about theologian John Hull who lost his sight over 30 years ago at age 48; watch online at http://www.nytimes.com/interactive/2014/01/16/opinion/16OpDoc-NotesOnBlindness.html

·        Timor Leste: A Love Story 27-minute documentary about a disability advocate and humanitarian can be viewed online at http://attitudelive.com/documentary/timor-leste-love-story

·        Wheelchair Diaries about a college student with cerebral palsy who was discouraged from studying abroad in Italy due to lack of accessibility, so he made a documentary about traveling with his wheelchair through Europe 

Comfort noodles: somen and soba

Poster reception and party with Kaimana Band

On Tuesday, I was assigned as monitor checking badges at exhibit hall and then bouncer at lunch.

I was positioned at the entrance to the exhibit hall, next to James Bauer, retired occupational therapist and author of three books relating to dyslexia: The Runaway Learning Machine (about growing up with undiagnosed dyslexia was written for his masters in human development, later performed on stage in St. Paul and London, translated into Portuguese), Too Much Time on Sycamore Street (self-help book in 52 bite-size chapters), Do You Know How to Pick Berries (story about high school student with dyslexia and young man with Down syndrome).  Jim's fellow exhibitor from Minnesota's Winsor Learning explained how The Sonday System helps students with dyslexia to read.

Jim showed me how to balance 19 nails on a single nail

Disabled Advocacy Group (DAG), a father-son law firm based in Chico (170 miles north of San Francisco), has successfully litigated over 2,000 ADA cases. Founder Lynn Hubbard told me that championing the rights of PWD is personal to him because his wife has been in a wheelchair for almost 50 years, and his son Scott (who also practices in Hawaii) grew up with a similar commitment to improving accessibility. DAG tote bag give-away was popular!

Executive Director Gary Powell of The Caregiver Foundation, which offers services ranging from group workshops to daily money management, special needs trust administration services, etc.

Fried tofu and rice noodle with pea shoots

Powhiri (Maori welcome) during luncheon – wow, cool to see Auriole Ruka and Recenia Kaka of CCS Disability Action on stage as we shared a table at International Forum, where I learned that New Zealand recognizes 3 official languages:  English, Maori and sign language.

Opera singer Laurie Rubin of Ohana Arts sang nose job song inspired by a critic who suggested she fix her nose, which she can’t see because she’s blind, and then she hears from a fan who adores her nose so she gives up idea of getting a nose job.  

Hawaiian soul singer-songwriter Paula Fuga

At wellness room, I visited Institute of Clinical Acupuncture and Oriental Medicine (ICAOM) for acupuncture and ear seeds to relieve my allergies, especially with mango season in Honolulu.  

Deafhood Allies presenter Marvin T. Miller, Marketing and Public Relations Chair at Deafhood Foundation (and previously involved in building ASL-friendly town in Laurent, South Dakota), considered the wider social and political processes that disadvantage marginalized groups and reinforce patterns of discrimination and oppression.  Allies must understand how audism (notion that hearing is better, attitude based on pathological thinking that results in negative stigma toward anyone who does not hear), colonialism and privileges (hearing, speaking, listening) affect Deaf community.  I was seated at a table where I was the only person who requested an ASL interpreter while my table-mates provided examples of how audism has affected them: for example, feeling frustration over being left out when they ask someone to repeat a message only to be told it's not important.  I appreciate quiet but without two-way communication, it's really hard to appreciate diversity.  

Jim’s Seven Habits of Highly Successful Dyslexics:  1) picture type of memory, 2) verbal skills (paint with words), 3) intuitivism, 4) survival (v. victim), 5) impulsiveness (suited for jobs like fireman, policeman, first responder, navy SEAL), 6) work skills, and 7) one significant person.  He reminded us that the “closed mouth doesn’t get fed” so it’s important to understand the nature of your disability to advocate for yourself, and if you disclose your disability, explain how you compensate for it.  For example, entrepreneurs who are dyslexic are high-energy and visionaries (Richard Branson, Steven Spielberg, Walt Disney) who can delegate.

For post-conference workshops on Wednesday, we returned to Hawaiian Village.

Honolulu Star-Advertiser reported that health of Hawaii’s seniors ranks #2 in nation but Hawaii has nation’s highest fatality rate for older pedestrians . . . I continued to walk.

Patricia Welch Saleeby led workshop on International Classification of Functioning, Disability and Health (ICF), which attempts to mainstream the experience of disability as a universal human experience, taking into account the social aspects of disability (and not only as a medical or biological dysfunction) by recognizing the impact of the environment upon a person’s functioning.  Instead of exclusion, ICF framework is consistent with the UN-CRPD that promotes support systems for full participation and reasonable accommodations.                                                                                                

Jean Tessmer of Space Options led workshop on 2010 ADA standards attended mostly by local architects, contractors, designers, engineers, etc. seeking continuing education credits. 

Blind guiding sighted:  Sheryl Nelson, Executive Director of Statewide Independent Living Council of Hawaii and owner of Koko Crater Coffee Roasters, guides Jean who is using white cane.  Sheryl shared courtesy tips:  rather than say, “careful, watch out!” allow blind person to use white cane to tell her what’s there; allow blind person to put her hand on your back or shoulder so she can follow body motion; ask what you can do to assist; don’t say “guess who?” but identify yourself to blind person; and ended, saying “smell you later!”

Asian-Pacific American Heritage Month

World Indigenous Peoples Conference in Education (WiPCE) took place at Kapiolani Community College (KCC, where I had taken classes as a high school senior).  I felt at home among indigenous peoples who revere elders (as the source of cultural traditions), history, nature and holistic healing.

In Elders Hospitality room, visitors enjoyed refreshments and learned from the wisdom of elders who shared their storytelling/reflections on life (which were filmed by students) and taught traditional practices: arts and crafts, natural plant medicine, spirituality, etc.

·         BELIEVE - Na Waiwai Hawaii (in foundation of Hawaiian values)

·         BEHAVE - Ka Hana 'Ike (in a manner to practice Na Waiwai Hawaii)

·         BECOME - Ke Ola Hawaii (in a way of life reflecting kupuna wisdom & aloha)

·         BE - He Hawaii Au Kakou (in pono & lokahi - righteous & balanced)

'Ike kupuna (knowledge of elders) – always carry it with you: Aloha (love); Lawai’a (fish); Mahi’ai (farmer); Makawalu (eight eyes); Malama ‘aina (care for earth/land); ‘Olelo No’eau (proverbs); ulana (weave)

Salt wada exhibit at KCC’s Koa Gallery included Anahulu, which refers to Hawaiian moon phase calendar broken into three 10-day phases: ho’onui (rising), poepoe (full or round) and emi (diminishing).  This traditional Pacific Island practice of natural resource management was based on an understanding of the cycles of scarcity and abundance, so communities lived in a sustainable, harmonious relationship with the environment.

In the Hawaiian worldview, a formal separation of men and women was necessary to maintain kuleana (responsibilities & privileges) but this didn't necessarily reinforce gender roles because there was some overlap related to healing, storytelling, star knowledge, etc.

‘aha kane (meeting for men) topics included care for ancestral bones and funerary possessions, tattoo traditions, identifying indigenous place names, Hawaiian warrior dance, indigenous diets, stone-carving, nose flutes, making stone poi pounder, native trading practices, Hawaiian sled riding, cordage making, etc.  

‘aha wahine kuhinapapa (meeting for women) topics included childbirth practices, lunar ceremonies for females, taro farming, preparing octopus, wayfinding, making lauhaula barrel bracelet, Hawaiian chant, balancing roles and childrearing (emphasis on special needs children), empowerment and leadership, etc.

Older Americans Month

Completed my internship with Administration for Community Living (ACL), which was an awesome opportunity to champion Older Americans Act! While my internship was focused on providing technical assistance to American Samoa Territorial Administration on Aging in implementing Title III-C elderly nutrition program, I also learned about Title VI grants to agencies representing Native Americans, Native Alaskan and Native Hawaiian elders (which are allowed to specify the minimum age, usually ranging from age 45 to 60, for participation if they represent at least 50 individuals who are at least 60 years old).

My routine was walking through Heart of the City Farmers Market, snacking on food samples on my way to the Fed Building and then buying bargain produce at the end of my internship day J.  Inside the Fed Building’s 8^th floor, where ACL Region IX office is located, I was amused by palindromes (words spelled the same backward and forward) on walls:

MUST SELL AT TALLEST SUM – AVID DIVA

NEVER A FOOT TOO FAR EVEN – DON’T NOD

I also completed my MA Gerontology at SFSU, where I took most of my classes in HSS 304 classroom with my back to this mural.  

For Spring 2014 graduation, SFSU held a ceremony for the graduate division separate from undergraduates for the first time, but I missed this because I’d already planned last year to be in Oahu (Gathering Place) for Pac Rim Conference through Memorial Day weekend.  While SFSU graduation took place, I treated my parents to acupuncture (using ICAOM's $20 senior health discount) followed by dim sum, our comfort meal of dumplings, noodles and tea J.  Photo above showing stack of oversized tea cups and teabags is Poignant Truth (2013) by Jung Ban Rae at Eating Cultures exhibit, presented by Asian American Women Artists Association (AAWAA) and Asian Pacific Islander Cultural Center (APICC) at SOMArts Cultural Center in San Francisco.

This tea tag wisdom reminded me of robust conversations while dining with my family—not that we always imparted Confucian wisdom, but eating together was an intergenerational opportunity to dialogue about our diverse life experiences and reflect on lessons.

Artist and civil rights activist Maya Angelou died this week at age 86, and I’ll always cherish her wise words: “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”