Let’s Rock and Roll

“Let’s Rock and Roll” poster at Senior & Disability Action office

“It’s shocking how age-segregated American society is …Nothing changes if we stay in our silos, and one of the really, really important things about living in society is having friends of all ages. It connects people empathetically, and that’s critically important.”

--Ashton Applewhite, author of This Chair Rocks: A Manifesto Against Ageism (2016) on why ageism is not ok

  

About a year ago after pondering the value of age-segregation, I left my job at a senior-focused organization to work in disability rights advocacy and later supportive housing.  Since the latter organizations served all ages, my intention was to bring a gerontologist’s perspective and promote intergenerational relationships. 

However, in these environments for all ages, I was disappointed that the concerns of older adults were often marginalized (in favor of investing in the future of younger ages; staff training involved chanting “Youth matters!” and ideas for after-school programs) or equated with children (so occupy their time with bingo games).  Like the late gerontologist James Birren, who found that residents in retirement “age ghetto” communities actually were more satisfied with their lives than were community residents of the same age, I learned from my senior residents that they really preferred the quiet and safety of living in senior housing (--just as I am enjoying this Spring Break week’s peaceful commute on Muni bus, without younger, often boisterous, students onboard).

Like the Parable of the Prodigal Son, I soon realized the error of my idealism for an age-less society when the real world remains ageist, and returned to the Aging Network!

At senior sites where I worked in supportive housing, homebound tenants appeared to be almost as vulnerable as nursing home residents since they must depend on and wait for others’ availability to access food, healthcare, transportation, assistance with activities of daily living, etc.  Thus, I decided to join a senior-focused organization serving seniors who are mostly homebound due to disability (including low-grade agoraphobia, but not by choice like shut-ins who use on-demand economy for convenience).

Disability rights

I learn how to be a better advocate of community living for homebound seniors when I meet disability rights advocates. 

At LightHouse for the Blind, Summer Beasley-Hoffman, an ACVREP certified Orientation & Mobility specialist at Veterans’ Administration, demonstrated two-point touch technique of tapping long white cane from left to right.  She said studies show that using white cane increased yield to pedestrians about 90%!  Good information to share with older adults who believe using a cane makes them more vulnerable because this “advertises” their disability.

 

At Ed Roberts Campus, Ralf Hotchkiss (Whirlwind Wheelchair founder), Anthony Tusler (About Disability consultant), Cathy Kudlick (Longmore Institute Director) and Corbett O’Toole (author of Fading Scars: My Queer Disability History) were panelists in celebration of Paul K. Longmore’s posthumous publication, Telethons: Spectacle, Disability, and the Business of Charity (2016).  The Jerry Lewis telethon for the Muscular Dystrophy Association (MDA) was ageist in parading cute disabled kids as poster-children needing audience’s donations to cure them, while adults who made up two-thirds of MDA’s clients were invisible. The MDA telethon ended last year after a 60-year run.  I like Andrew Pulrang's "Telethon Thoughts" from Disability Thinking: 

  

“Unless you have a disability yourself, you have to think actively and practice deliberate empathy to understand how a well-intended fundraiser can be not only distasteful, but even harmful…

I don’t really object to raising money for medical research into disabling conditions. I resent the fact that the general public is consistently more excited about supporting those efforts than they are about supporting equal rights, equal access, and the nuts-and-bolts stuff disabled people need to live decent lives with our disabilities. It’s strange, when you think about it. “Medical Research” is so abstract, and outcomes so fleeting, while building ramps and buying people speech synthesizers is entirely concrete, with immediate payoff. You would think all us practical-minded Americans would rather give to pay for things people can use, than to provide open-ended funding for fuzzy dreams.”

At SFSU Campus, Smith-Kettlewell scientist inventor Joshua Miele delivered Longmore Institute on Disability lecture on How Access Really Happens: Disability, Technology, and Design Thinking.  Dr. Miele talked about his role as scientist/scholar who is blind and member of disability community to “demand, require, cajole the world into giving what we need to do things we want.”  Dr. Miele’s work involves designing and developing technology for people with visual disabilities relating to access to information, such as tactile maps.  This might involve breaking the rules to get what we want until the rules change, and then real access happens; he said permission is less valuable than the outcome as in the case with his tactile BART station map project, which was completed two years ago without waiting for BART to provide plans, and his ongoing YouDescribe project (to add audio description to YouTube videos).  He reminded us that accessibility principles are not guidelines/standards so we need to go to users who understand what needs are.  

Seniors dominate in end-of-life issues

At SF End-of-Life Network meeting, Co-Chair Nate Hinerman introduced Roy Remer, Director of Guest House Facility and Volunteer Programs at 6-bed Zen Hospice residential care facility for chronically ill and 60-bed hospice/palliative care floor at Laguna Honda Hospital.  Zen Hospice integrates social and medical services with spirituality (Zen mindfulness) to enable the dying to live fully toward the end. Its caregiver volunteer program is rigorous, involving 43 hours of training, minimum 1 year commitment of 5 hours each week.  Outside of Zen Hospice, Roy guides wilderness rites of passage to prepare us for death and help us in the process of grief.  

At SFSU, Gerontology Professor and Interim Faculty Director at the Institute for Palliative Care Brian de Vries moderated a panel discussion with BJ Miller, MD (Zen Hospice), Rabbi Eric Weiss (Bay Area Jewish Healing Center), Redwing Keyssar, RN (Jewish Family and Children Services) and Daphne Stuart, LCSW (UCSF Symptom Management Service) on Everything You Wanted to Know About Palliative Care in San Francisco.  In a nutshell, palliative care is person-centered and multidisciplinary focused on improving quality of life, including pain and suffering relief, psychological/spiritual support for patient and family, and conversation on choice and hope.  Hospice is a form of palliative care, but most palliative care is not end-of-life care or hospice. 

Shireen McSpadden, Interim Director of San Francisco Department of Aging and Adult Services, remarked that several panelists (Miller, Keysaar, Weiss) serve on San Francisco Palliative Care Task Force, which produced its 2014 Final Report. 

At The Booksmith, Ann Neumann and Katy Butler discussed their respective books, The Good Death: An Exploration of Dying in America (2016) and Knocking on Heaven's Door: The Path to a Better Way of Death (2013).  Katy noted their commonalities (journalists who wrote books about their fathers’ deaths) and differences (20 years apart in age; Katy’s father had too much treatment prior to his death at age 80, while Ann’s father had too little treatment prior to his death at age 60).  According to Ann, who became a hospice volunteer after her father's death, there is no “good death,” but always pain, loss, disparities in health care, etc.  Katy is writing her next book, Good End-of-Life: A Practical Guide, which will include ideas like tripling payments to hospice, lengthen Medicare hospice eligibility from last 6 months of life to 1 year, and consumer lobbying.