“Though we sow in sorrow, yet shall we reap in joy.”
To the Stop Bullying Coalition
Dear Friends and Colleagues,
This is a time of great danger for all of us who are elderly and disabled and live in public and privately owned subsidized housing. We are all at exceptional risk of getting COVID, becoming severely ill, and of death.
Now I have COVID-19, or more precisely, COVID has me; I am 84 and have health conditions so that my risk is great. I have access to excellent medical care, although the health system is under stress and I am working long hours to assure my care.
Usually I write about our common needs, our advocacy that we do together, and to put forth policy and legislative proposals. Today, not knowing the future, I am writing to you—my friends, my colleagues, my opponents, and my mentors—in haste to look back with a personal perspective on my life, what we have done and have tried to do, and to look forward to the tasks ahead.
I don't know, at my age, and with COVID, how many days or years I may have of life, especially useful, productive life. I don't know if I will ever help my daughter plant a tree or flowers in her garden or talk computers, music, or the ironies and joys of life with her, my grandchild, and my son-in-law. I don't know if or when I will walk by the shore or in the forest or the desert with my son, my daughter-in-law, and my two grandchildren. I cannot predict when the mother of my children and I can, at some family gathering, recite together the “Shecheyanu,” the Hebrew prayer thanking God for enabling us to live, to survive, to arrive, and to be present at this moment. I don’t know when my brother David and I can do a project to archive and document my fathers artwork and my own lifetime of photographs—my observations of life, nature, community, advocacy in America including among the Dine (Navajo); and community in Israel. Or if and when Steven might complete a reunion of surviving brothers to enjoy a ritual meal of seafood with onion rings and chips. And to see my dear cousin, Lorelei, or share an hour by the shore with Manny, or to solve the moral riddles of the world with Shea. My niece, Sarah; Debbie; Amanda, Sammy… Recalling the joys of walks with my Canaani dog, Keren. And the rare moments of feeling myself like a child held by and united with the sailboat, moving with the waters, dancing with the wind.
The Stop Bullying Coalition members and our partners have sought greater public health transparency to enable effective prevention and to facilitate support for those in quarantine. That task is ongoing.
We sought priority for all in housing to be vaccinated, and saw the Commonwealth advance this priority in response also to a concerted effort by landlords and managers and our colleagues at the Citizens’ Housing and Planning Association (CHAPA).
For nearly a year I have used our platforms, the Newsletter of the Stop Bullying Coalition and our online presence to publish accurate public health information targeted to public and subsidized housing for elderly and disabled persons. This population comprises about 92,000 people in 1,400 developments all over the Commonwealth.
I have been building a small group of studies on what works and doesn’t work in housing, first with respect to controlling bullying, and second, with attention to protecting tenants from COVID. The underlying factors are closely related, and the difficulties we met in seeking to remedy the problem of bullying and mobbing have not been overcome. Now, the COVID crisis demands immediate action without the benefit of the changes we hoped for and struggled to gain. I have been looking to find examples of what is working, and the Chelsea Housing Authority has some lessons for us; landlords and managers, do consider their efforts.
We feared that housing facilities would be overrun by COVID because of the vulnerability of the tenants and the challenge of achieving compliance with masking, distancing, hand-sanitisation; and the frequent cleaning of high-touch areas by the landlord. There is no oversight so there is much variety among facilities.
Authorities have not confronted the potential for COVID to overwhelm many tenants quickly in these residential settings that could lead to disasters like we have witnessed in nursing homes. And so far as we know, they aren’t looking for data, and they won’t make public what they do know.
Therefore, we have advocated for changes in legislation to enable transparency on public health data on morbidity and mortality in these settings. We have not accepted the idea that we are safe in these settings, not in the absence of data. I have sought reliable data on COVID in housing, even filing public information requests, with no results.
Of course I have carefully followed the public health advice, including choosing almost complete isolation and acting with great care in any social interaction. But I live in a subsidized housing apartment in Peabody where some people do not have the ability to understand and follow these mandates, where some can’t afford masks, and where some, just as in other public settings claim the right not to mask, or see it as a flag of a hated opponent. But their actions put others at risk.
In some housing situation, the caring landlord sees an obligation to help their tenants, and are able to reduce their exposure to COVID. They will remind and assist people who forget, but they do not hesitate to deal with defiant individuals if their actions threaten the well-being of other tenants, and will use the tool of eviction if need be. Where I live, despite our efforts, the actions of the landlord have been inadequate to change behavior, and there has been a strong reluctance to do more based on assertions that this is “independent living.” This seemed to me to callously and cynically ignore the mutual obligations of the lease and laws affecting tenant-landlord relations. Don’t we deserve to be safe in our homes? We tenants demanded action.
Today, in response to the demands of our tenant group, management posted a letter from their attorney to all tenants which concludes with a promise to enforce all of the COVID regulations. If they follow through not only with enforcement, but a collection of educational and supportive actions, and if all tenants do respond, we may have achieved a first step towards a safe home.
The use of masks and distancing are mutual protections, if everyone does it, together we all have a better chance of staying safe. My efforts were not enough, and whenever I left my apartment I observed and had to pass by people without masks. And I have not been able to convince the health department to step in to enforce the behaviors that are mandated by the Governor.
And I am now at least the second person among 88 tenants to have tested positive; and still no action, even when the exposed partner of the positive case roams the building instead of staying in isolation to protect others. How many will sicken and how many will die?
I have met and worked together with some wonderful people and I have learned from their wisdom and experience, and too often, their pain. I gain strength and joy from the work and from the friendships and partnerships forged in common goals.
I don't know who will continue and strive to complete and extend the work that others had begun, seeking respect and justice for the elderly and disabled. To mention only a very few of the tenants who have shared the work with dedication and courage gives me hope. Lynn Costello, a brilliant writer and compassionate person, learned to advocate for others and joined with Christin Shelton to create the Lowell Anti-Bullying Coalition. Pamela Goodwin sought tenants’ rights in an abusive housing program, becoming expert in all the regulations, but could only escape the bullying and mobbing by choosing to become homeless and live in a tent. Pamela was a major contributor to the work of the Commission on Bullying. Bonny Zeh co-founded the Coalition and provides an important resource listing on key topics. Jonathan Gale was a wise voice of counsel on disability issues. Margaret, a disabled woman who was evicted in retaliation for her advocacy for tenants living with disability nevertheless bravely testified before the Joint Committee on Housing while homeless. Susan Bonner, Legislative Chair of the Mass Union of Public Housing Tenants, and the tenant leadership, supported the efforts.
In my advocacy role as Coordinator of the Stop Bullying Coalition, I have tried to make clear it is not about me, but about my peers. Because we all deserve respect, we are all owed our rights, and because whatever I have been able to begin has been grounded in what I learn from my friends and colleagues, many of them tenants. As I have come to know the disability community, I have learned to always respect everyone and to focus on what every person is and can contribute. I am supported and mentored by so many who rely on me to speak for them. And we have enjoyed the support and friendship of legislators and the many individual and group partners of our coalition.
Indeed, the research and advocacy work of these last years has been the fulfillment of my original career goal as an anthropologist and documentary photographer. I studied anthropology with Margaret Mead in order to learn how to document societies and to try and to draw out some truths that could somehow make things better. Yes, I was and remain naive, and am still trying. As naive as I was as a four-year old assisting slum clearance, a program that helped everyone except the original tenants. I have learned that knowledge must be shared and turned to a concern and a passion for action among many persons, we can only do this together. For the last decade, living in housing, I have had a unique opportunity to take up again the basic skills of observation and listening to understand my neighbors and the problematic, toxic situation, to try to see the connections with our governmental structures and our culture, to write and help pass legislation and serve as Commissioner to study bullying and mobbing, and more. (Commission to Study Ways to Prevent Bullying of Tenants in Public and Subsidized Multi-Family Housing, pursuant to Chapter 2 of the Resolves of 2016)
So now when, yes, I am in doubt as to my outcome, I worry not about death but I worry about how I can finish the task, or at least keep it moving forward. A task that includes finding additional people who will together to share the roles of advocacy; research, education, organization, and building coalitions.
I began the work as a moderate and a compromiser, learning to organize, build relationships and a coalition, and entrusting our legislative partners to implement our goals. Our partners included Senator Joan Lovely, Representatives Brad Hill, Tom Walsh, Ted Speliotis, and Kevin Honan among many. Mary Margaret Moore was an early and continuing source of vision—that there is love in everyone.
Moderation worked when we were seeking only difficult goals. But when we have sought solutions that were impossible, solutions that would really have a chance to protect tenants by assuring oversight, through a new ombuds office, we ran into a wall. My minority report to the Commission on Bullying was rejected because it would have been “advocacy for tenants”—although advocacy for tenants was my job and the charge I had written in the legislative call for the Commission.
The same structural and social issues that have enabled bullying and mobbing to persist, with roots in colonial times, now are barriers to controlling COVID. These include wrongful management goals and structures, or a group of bullies and the prevalence of every person seeking to control others through aggression, the striving to seem better than others. And the failure of government support for doing things better and the lack of oversight. The issues in housing are a microcosm of what we see on the national scene. It is easier to see the flaws than to repair them, that will take all of us working together. We now have begun to support the efforts of the Dignity Alliance whose broad goals of health and independence for elderly and disabled complement ours.
The strategy of allowing known avenues of transmission, such as indoor group gatherings, and not enforcing masking and distancing panders to a natural desire to continue habitual social patterns. When the Governor allows only the imminent risk of health system collapse to trigger greater stringency, people die and the fabric of our social and health systems fray. But there are early indicators which can trigger our alerts weeks in advance of the hospitals shutting down. Today, as I seek urgent medical attention, my conscientious caregivers simply struggle to find the bandwidth to help. I am disheartened and frustrated by the failure of our state leadership to have a more aggressive public health stance, the refusal of the Governor and Department of Public Health to distribute morbidity and mortality data that is site-specific, and the failure of local health departments and landlords to enforce the basic public health mandates. The purpose of the recently passed law, Acts (2020) Chapter 93, was to protect the public health, but has been defeated by deliberate executive inaction and the failure to remedy defects in the law.
Fixing that may take more time and skill than I may have, we need others to come forward to carry on. I and the Coalition have enjoyed the support and advice of Michael Siegel, Professor, Department of Community Health Sciences, Boston University School of Public Health. Our challenge is how to effectively translate and implement the science of public health into policy and daily routines.
This is democracy, this is what we do. For me, democracy must include empowering people, and our institutions too often strip agency from us, and trying to overcome that has been part of my life.
Humans are social animals. Our sharp skill at effectively forming a group to act together has two edges. The power of the group and the leader or coordinating process can be focused on assuring the well-being and survival of the group and all its members. The power can be projected outward for protecting the group against real or imagined danger. Or the power can be turned inward, to attack and eliminate any who would dare to disagree: this is bullying, mobbing, authoritarianism. The balance is always precarious, as we know from our recent political drama, and as is made clear in our oldest laws and religious commandments. We would not need a rule against murder if murders never happened, or need to urge each other to love and respect.
COVID has tested us because it is poised to kill us if we assemble, an urge that is hard to deny; and it is very hard to adopt the new safety protocols. Somehow, we need to work together towards our common safety; we need rules and we need enforcement that is just. We must begin by respecting each other, something that the elderly and disabled are missing from the wider society; that lack of respect may be the underlying barrier we have yet to breach.
I hope to be back with you soon, and if not, now you know why. Together we build from one strength to another. Stay safe. And thank you for what you do.
All the best,
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