Slowing down, making room for accessibility

I want to ask us to slow down.  Here’s my story.

I’d just come out as a dyke when I attended the 7th annual Michigan Womyn’s Music Festival in 1982.

Of the many eye-opening sights I remember from my first five-day sojourn in “the woods” as we referred to the Festival, what stands out all these years later was the extensive path of upside-down carpeting laid out so that women in wheelchairs could take part in daily workshop offerings scattered on the land, and get themselves to the music stages to hear the nightly concerts.

While, starting in 1991, the Michigan Womyn’s Music Festival came to represent the intransigence of essentialism — the Festival barred non-“women-born-women” from attending, and Trans Camp was created in protest by transwomen who were living as women in the larger culture — my memories of my early years at Michigan are about learning to see and value difference: how to plan for people’s needs as if we all mattered.  Women in wheelchairs, women of color, women with children — women of different abilities and bodies and needs and experiences.

We are all part of one another.  – Barbara Deming

I had these intersectional lessons stored in my consciousness when I joined ACT UP in March of 1988, after my father’s long illness ended that February with his death.  A great communicator, an academic, a passionate runner, an indefatigable dancer, and a committed partner to his lover, my father’s last two years on the planet were lived as a very frail person, often unable to speak with us to help us help him to meet his failing needs.

ACT UP, from its beginning in 1987, was organized as a movement by and for those living with AIDS, and the people who loved them.  PWAs — People With AIDS — were front and center in the organization.  AIDS is a syndrome, a multiplicity of different illnesses that surface as HIV destroys the body’s ability to fight infection and disease.  In the early days of the AIDS crisis — years before 1996 brought widespread access to the combination therapies that allowed AIDS to be considered a manageable illness for the first time — our friends and comrades in the movement might seem healthy for weeks or months, only to sicken suddenly and die with impossible quickness.

As frightening as it was to watch my young middle-aged father become incapacitated by AIDS — as I write this I am aware that I’m within a year of his age when he died — it was horrifying to see young people, my peers, mostly young men in their early twenties and thirties, become incapacitated by HIV/AIDS, shadows of their former robust, vital, defiant, and beautiful selves.  What was galvanizing was their resistance, as people living with HIV and AIDS.  PWAs were inseparable from ACT UP.

When I joined ACT UP my father was dead; I was practically out of my mind with grief and rage.  Finding a way to channel the love and anger I felt for those around me, my sister and brothers in the fight against the AIDS crisis, was my foremost priority.  I learned to plan demonstrations and help others move from fear to action, to support AIDS activists to be their most fearless and free in a community of loving, angry comrades.

This meant adapting our nonviolent civil disobedience trainings to the needs of the ill and frail, and accommodating our demonstrations and marches to the abilities of people who couldn’t walk fast or move adroitly, for people who were undocumented, for those who if they were risking arrest, needed to take their medications with them to jail.

Because we were committed to getting there together, as a community, it meant changing the pace and adding practical information to civil disobedience trainings.

Marshals were trained to make sure that those at the front of the march carrying the banner would walk slowly; it is an axiom of demonstrations that however slowly the front of the march is traveling, the people at the back with canes and in wheelchairs would always be hurrying to keep up.

In our able-bodied-worshiping culture, ACT UP made every effort to take the shame out of being ill in public and operating at less than the ideal full, vital, healthy self.

ACT UP re-committed to provisional nonviolence for every large demonstration we took part in, encouraging and planning for the greatest number of people to participate, as safely as possible.  Whereas in the 1960s, CD trainings advised people not to bring drugs to demonstrations, we added information to our trainings informing PWAs to bring medicines in their original prescription bottles in amounts that would see them through a potential 72-hour jailhouse process.  Whereas “going limp” was understood as the macho aim of noncompliance at the moment of arrest, we trained people to honor their bodies and conditions, and feel comfortable to walk with their arresting officers when arrested without stigma.

Nonviolent, mass arrests lend themselves to the power of inclusion.  Organizing along nonviolent principles is inherently about taking responsibility for oneself, one’s own actions, and accepting the consequences of one’s actions.  The ethic of personal responsibility informs how we plan larger protests and mass actions: as a community doing civil disobedience, we take care of each other and honor the vision for nonviolent protest that we have collectively created in open discussion.

In this context, slowing down and considering our options while protesting is tactical.  We don’t have to to be youthful or agile when, en masse, we sit down when confronted with law enforcement or counter-protester reaction and claim our space.  This tactic allows us to take our time, to see clearly across a demonstration: we witness exactly who is amping up the tension, we expose violence if it’s happening. We also lower our heart rates, we buy ourselves time to negotiate and even discuss our next collective step.  We claim power through nonviolence.

The time-honored tradition of organizing large-scale demonstrations in smaller affinity groups took on new meaning during the AIDS crisis, as affinity groups became mechanisms to care for friends who were living with AIDS, both while we were in the street, protesting, and when useful, at home, when an affinity group member was going through a rough patch of unwellness, or a final illness.  Nonviolence translated into community responsibility in our larger lives, not only when we were protesting.

It takes awareness and some good planning.

I thought about this a lot as I got myself through social justice law school as a single mother with a child in diapers many years later.  My small study-group became my affinity group; they’d meet at my house for study sessions before our interminable tests, so I didn’t have to travel.  When a contingent from our school attended the pro-choice march on Washington in 2004, my study group helped pull my son, asleep, along with us all day in his little red wagon.

I’m thinking about it again, now that we’re 25 years on from the epicenter of the mass response to the AIDS crisis and I’m older and greyer.

Many of my mentors, women who were active in early lesbian liberation and anti-militarism movements, are now in their 80s.  While many are robust, some have had heart surgery, one is recovering from a broken ankle.  My mentors have the stamina to come to direct action meetings to fight back against the right-wing agenda, and they continue to provide us with their wisdom.  They continue to prevent us from in-fighting and continue to offer sage, strategic advice for targets and demonstrations.  I want their wisdom with me when I march in Washington and in New York City to protest the right-wing takeover.

I want my movement to be large enough to include their wisdom, as well as the voices and energy of the younger, more able-bodied, many of whom have yet to experience the strange solidarity of sleeping on a hard cell floor among tired allies.

I want my movement large enough to include all our lives.  As the anti-education roll-out begins now, in February 2017, with an attack on educational support for disabled children in Texas, I want a movement that is inclusive of the necessary voices and lives of activists whose speech I have to listen to with care, activists in wheel chairs – activists whose lives and concerns necessarily inform my own.

If we have to slow down to allow this to coalesce, that’s all for the good.  Slow means greater probability of safety at demonstrations, greater hope of inclusion, better representation, more talking in real-time, more understanding each other’s lives.  This is what we are fighting for, after all.  The political will to recognize that we all matter.  It will take all of us.


Alexis Danzig is a direct action organizer and nonviolent civil disobedience trainer in NYC, presently working with Rise And Resist. When she’s not working with ACT UP comrades to provide trainings, Alexis is writing grants for nonprofit social justice organizations, helping to start NYC’s first bicycle co-op, Mechanical Gardens, and taking the occasional house painting job. If you’re interested in a free nonviolent direct action training for your community or extended friendship circle, please call Alexis at (212) 810-7400.

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