Making Goodness Accessible
COLUMN: Aging in Enlightened Society
by Jeff Rubin
Recently the New York Shambhala Center hosted Sakyong Mipham Rinpoche for a very auspicious weekend of teachings entitled “Gathering Goodness”. We benefitted from the magnetizing of people, energy and financial resources that inevitably occurs when the Sakyong visits.
For myself, the weekend brought a certain ambivalence. On one hand, I was very excited at the prospect of seeing the Sakyong and hearing his latest teachings on the Shambhala principle as the basis for societal change. On the other hand, as a handicapped person, I was anxious at my ability to travel to the three venues of the weekend within the heart of Manhattan.
A Little Background
For the last decade or so, I have been ill with a previously undiagnosed neurological lyme infection, and at least one other tick-borne infection. These infections have reduced my mobility to the extent that I now use a walker to ambulate, as well as dealing with chronic fatigue and other symptoms. I live in New Jersey, around an hour’s drive from Manhattan on a good day without much traffic. Although I’m fortunate and can drive, getting in and out of the car and buildings, and parking the car require assistance, especially in the middle of Manhattan. Plus I’m limited by the distance I can walk and concerned about negotiating crowds, so I typically use a wheelchair if I can’t park close by or it’s very crowded. Once inside a venue, I then need to ascertain if I will be near an aisle and if the bathrooms are close by and accessible.
Now of course there’s people I could phone to help me but it’s a project to figure out who is going to what events, whether and when they are available, what their timing is for the event, (I need to be early to avoid the crowds), and so on. Plus, much as I hate to admit it because I know people do love to help, I feel bad asking for help all the time; it eats away at one’s self esteem and sense of independence. For this weekend event, my wife, Halice, would be attending the public talk on Friday night with me, so that covered the main obstacles of getting into the venue and parking for that night. That still left Saturday and Sunday to figure out, when I would be traveling alone.
For the record, let me just state that I’m quite fortunate and an outlier for this particular issue at the Center. I’ve been a member of this center for almost 40 years, am a Senior Teacher, know lots of folks, and in general, I am a known entity to this sangha. But what about those disabled, aging, or ill who exist more on the fringe? They may know only a handful of people, so might have to rely entirely upon their own resources or their own circle of care to attend events. In the case where those resources do not exist, or the person is reticent to ask for help, they simply fall through the cracks and don’t attend. Multiply this by scores of people in this category for an event of this magnitude, and you quickly realize the real need for an infrastructure and organization at the Center dedicated to accessibility issues.
Which brings me to the crux of this article: namely how the New York Shambhala Center, for the first time in memory, organized and mobilized a team to proactively help those with accessibility issues, thus addressing a need which will only become more critical as our community ages and becomes infirm.
An Accessibility Team is Formed
I first became aware that such a team was forming when one of the initiators, Jerry Stone, tapped me on the shoulder at the Center about two weeks prior to the event, and asked if I was attending any of the program and did I need assistance. He also asked me if any members of the Healing Circle group, (a monthly support group I facilitate at the Center dedicated to those afflicted with illness, disability or adversity) were in need of assistance. Jerry, who works with marginalized communities and sets up offices in compliance with the American Disability Act, had teamed up with Andrea Sherman, a Fellow of the New York Academy of Medicine and the Gerontological Society of America and co-founder of the Center’s “Conversations on Aging” group to work on this issue together for the visit. They quickly realized that their common work experience and friendship, their repeated exposure to many folks who need help at the Center, (plus the fact that no other group at the center owned this issue), made them ideal candidates to head up this effort.
They formed a team comprised of themselves, Kevin Gormley, Terre Roche, Deborah Gladstein, Jinpa Heyer, and myself. Two team members toured Friday’s venue for the Sakyong’s public talk, the Society for Ethical Culture, where the expected attendance was eight hundred. They walked the facility, looked at entrances and exits, seating quality and location, and noted what assistive devices were in place and available already. These included ramps for walkers and wheelchairs, elevators, accessible lavatories, and assistive hearing devices. Only later did the team discover that the hearing devices didn’t actually work. More on that later.
Similar efforts were made at Saturday’s venue, the Manhattan Center. Keep in mind that both venues are over 100 years old, well before accessibility aids and retrofits were required as part of the American Disability Act (ADA) mandates. Since hearing assistive devices do not work for every hearing disability (even when the devices are in working order), a specialist in Sign Language Interpretation was also recruited to provide signing services.
The next order of business was establishing the clientele for these services, i.e. anyone who needed help entering or managing at the events. Initially the Registration team was requested to supply this information, but when that didn’t work, we had to assess this through different channels. Andrea reached out electronically to her “Conversations on Aging” list and I reached out to my “Healing Circle” list to see who might need special services, and a week before the event, all registrants received a similar query. From that information, a master list of participants with special needs was created, and they were encouraged to come early on Friday night to help get them situated before the crowds arrived.
At the Event(s)
Those with hearing impairments were given seating near the front of the room so that they could read lips of the speakers or be situated in proximity to the Signer. In addition, an elder from the Healing Circle group was helped with transportation to the venues and offered assistance throughout the weekend by another member of the Healing Circle.
What we Learned
We learned plenty, especially that Murphy’s Law supersedes all planning. For starters, the hearing assistive devices didn’t work and this was only the beginning of a rolling disaster for those hearing-challenged. The sign-interpreter confronted two almost laughable (only if you’re not the one affected of course) glitches. First, no one told the team that the house lights would be dimmed save for the stage lights illuminating the Sakyong. So the Signer could barely be seen in the now dim twilight of the auditorium. Second, we also discovered that the old sound system didn’t work that well in the corners, so the poor Signer, whose hearing is excellent, couldn’t quite make out all of what the Sakyong was saying. Result – you can’t sign what you can’t hear. Needless to say, those audience members hard of hearing were very unhappy, and told the team in no uncertain terms at the conclusion of the talk.
That was probably the worst of the glitches. We also learned some specific things too numerous to document here, but it’s worth mentioning that you can’t get the word out early enough that help will be available. As much as we tried to give folks advance warning that services were available, I’m sure some folks stayed away simply because our history of assistance at events isn’t there to draw upon. Next time there’ll be an expectation that services are available, which is good.
I personally feel so grateful to Andrea and Jerry and the rest of the team for taking on this project. Special thanks to Kevin Gormley who served as my personal accessibility helper throughout the entire weekend. What a relief to have someone dedicated to my well-being and getting me to and from my car each day in the middle of busy Manhattan.
For too long, our Center has paid lip service to accessibility issues without actually providing the services, and with this effort, we’ve made a very tangible first step. Wouldn’t it be great if in the future we could pair up those who can give help with those who need help as a seamless part of planning for major events, and beyond that, for garden-variety events as well? That would truly be a manifestation of Gathering and Nurturing Goodness.
Jeff Rubin is a senior teacher in the Shambhala Buddhist tradition. Subsequent to developing a progressive neurological illness in 1999, he began the study of teachings that view illness as a steppingstone to spiritual growth, wholeness and unconditional well-being. In 2006, he developed and directed a program called “Unconditional Healing” and has since offered it over a dozen times at various venues around the country. He has also established a monthly support group called “The Healing Circle” for those who are ill, disabled or undergoing significant adversity. Healing Circles currently meet in Manhattan, Los Angeles, and Albany, NY. Jeff’s just-launched website devoted to Unconditional Healing can be found at www.unconditionalhealing.org.