GREG EPSTEIN: Hi Jennifer! Thanks so much for agreeing to do a Q&A with me. I’ve been following you and your work for years now. Those who follow my work will know that I try to invite the most inspiring people, who have the most meaningful stories to tell, to SPEAK at The Humanist Hub. We really tried to get you here to be a featured speaker our center for “atheists, agnostics and allies,” but since our community meets on Sundays, our schedules didn’t quite fit for an event here this time. The Humanist Hub is, however, proudly co-sponsoring/promoting your upcoming screenings at Harvard Medical School (3/26) and the Brattle Theatre in Harvard Square (3/28).
JENNIFER BREA: Thank you, Greg! I’m so thrilled to have the opportunity to connect with the Humanist Hub!
GREG: I got to know you and Omar a little bit in your days at Harvard, before your illness began. And I thought, then, that you were two of the most charismatic, energetic, impressive people I’d ever met. You’ve since had to almost completely re-imagine, and re-build, your identity. Yet it seems you’ve been able to do so while staying true to a lot of what was most important to you in earlier stages of your life. I want, for myself and for my community, to understand a little more about this. In our community, we try to vulnerably support one another through the fact that this life (what we believe is the only life human beings get) is finite and uncertain, and we have to make meaning out of the fact that we are so unable to control so much of our fate– even those of us who are so privileged to be able to control so much. You’ve lived this, it seems to me. What are some of the insights you’ve gained about finding meaning amidst life’s uncertainty?
JENNIFER: As you’ll see in Unrest, when I got sick with myalgic encephalomyelitis (ME) (most people reading this will know it as “chronic fatigue syndrome”), my life dramatically changed. Within the course of about a year I went from a normal I most certainly took for granted – spending summers on various continents doing field work; running, hiking, biking, kayaking; having a body and a brain that allowed me to do and be and think in whatever way I liked – to being almost completely bedridden, often unable to read, write, speak or think. To an extent I wasn’t even fully aware of, I had defined myself by my abilities. Suddenly, I lost everything I thought made me who I was. If I could never leave my bed again, could not read and write or be a part of the world, what value did my existence have? For a long time, I thought this would end in my taking my own life.
It felt like I was falling down a long, dark well, futilely trying to find something to hold on to so that I could claw my way back or at least stop falling. You spend so much time trying, wishing, fantasizing about going back. At a certain point, I realized that no matter what lay down the road ahead, there was no going back. If I was going to survive, I could not predicate my survival on my recovery. My life had shrunk essentially to the size of my bedroom. Once I embraced that, I could say, OK, what do I have? What can I do? I resolved to be grateful for and to inhabit every inch of that new life and those new abilities. And then I got to work.
Working meant being on my laptop, engaging the world via email and social media, and eventually, directing a film, all from my bed (or couch). Sometimes I had five good hours in a day, sometimes ten minutes, sometimes nothing at all. I learned in those years the power of geological time. A drop of water falling on a rock can create a canyon, given enough time. I was that water on that rock, using whatever time or capacity I had in service of a single-minded vision, without any judgment about how long it would take. I just used what I had when I had it, and learned not to stress or worry when I didn’t. The narrowness of my life gave me a focus that eluded me when I was young, healthy, and able-bodied, with seemingly limitless time and options. Becoming disabled forced me to learn some of the fundamental skills I think you need to be an artist. I focused on what I could control, on what I could conceive, I did the work, and I learned to surrender the outcome to the process.
That was one way I coped with uncertainty. The other was to choose to make meaning. I don’t think everything that happens to us happens for a reason and is good. I think the horrible things that happen to us in life are inherently meaningless. These moments remind us that we are small, frail, mortal in the face of the silent howl that is the great void of space and time. At the same time, we can take those moments and chose to imbue them with deep and beautiful meaning. I did that by finding and creating community, by joining with others to fight, by telling stories, by making art.
GREG: In hosting dozens or even hundreds of inspiring speakers over the years, our community has had conversations about incredible stories relating to topics like: love and healthy relationships, racial and economic justice, feminism, environmentalism, equality, mindfulness, mental health awareness, aging, parenting, and I can go on and on. But one of the topics we consistently get requests for more attention to, is disability. We have so many people who are part of the broader humanist community whose lives have been touched by the experience of relating differently than “normal” (whatever that is?) to this society’s expectation of physical health and able-bodiedness. In a progressive culture in which many of us are trying to be better at understanding and uplifting people from marginalized backgrounds and identities, this is one of those issues that can too often still be ignored even by those of us who are trying to be conscious and conscientious. I would think you never quite expected to become part of this particular identity group, at least not in the way you did. What has it been like for you to engage with the topic of “disability”? Do you define your experience in those terms, or how do you understand it? How have you connected with others with different experiences of ability and disability and what have you learned that you now want others to know about?
JENNIFER: I not only never expected to become disabled in my twenties, I never even thought about it. Looking back, that strikes me as a major failing/oversight of our culture given that all of us (if we are lucky to live long enough) will eventually become disabled. And yet, whether we are born with a disability or acquire one later in life, our culture does a very poor job of preparing us for that experience. I never knew what happened to me could happen because I had never read that story or seen it on screen. That’s a large part of the reason I made Unrest – it was the film I needed and wish had existed when I first got sick.
We have so few authentic representations of disability in media, especially film and television, aside from the almost annual Oscar bait forays into telling these stories, often in problematic ways, by writers, directors, producers and actors who are not disabled. There are as many destructive tropes about people with disabilities as there are about African-Americans or white women, and these need to be subverted or completely set aside by the construction of something new, as we are seeing some in Hollywood start to do with race and gender, I think in new and thrilling ways. Our existence is neither tragic nor triumphant. But their oversight is my gold. I’m excited to write the stories that aren’t being told, to create roles for the actors who aren’t getting hired.
As for what all this means for progressives, in this age of intersectionality, disability is almost always excluded. We rarely talk about the intersection of disability and face, even though half of people killed by police have a disability. (Last week, disability activists were fundamentally excluded from #MarchforOurLives as in many locations, there was no information about accessibility and no reply from any outreach to inquire about it.) We rarely talk about the intersection of disability and gender, even though it touches everything from who gets sick (80% of people living with my disease and autoimmune disease as a whole are women), to who participates in clinical trials, to feminist issues as wide-ranging as reproductive rights, child custody, and sex work. There can be no progressive politics without attention to the way disability intersects with the work we care about and without the inclusion of people with disabilities, as organizers, participants, leaders.
Having ME sucks, and I fight every day to find ways to have more function, to work with my community to fight for equal access to research, treatment and care. I want to be as well as I possibly can be, and would give almost anything for a cure. But disability isn’t only a medical description. It’s a positive identity. It’s a community with a culture and a history. It’s my friendships. It’s my way of seeing and being in the world. It’s my art. Having ME sucks, but being disabled is awesome.
GREG: I have no idea if you happen to be what I’d call a “humanist” or if you are more of an “ally” to our nonreligious community. (And for this purpose, I don’t care– I find you and your story inspiring regardless of your religious beliefs or lack thereof.) If you are religious, has any particular secular philosophy been helpful to you in your journey? If you are more on the secular side, how have you engaged with people’s offers of prayer or other religious comments, meant supportively, that may not have resonated with you? Anything else in particular you’d like to say to a community of humanists and allies, locally and nationally?
JENNIFER: I grew up in a religious community (several, actually!), I miss it, but I don’t have the faith they require, nor do I have any interest in cultivating it. I don’t think of myself as religious, secular, atheist or agnostic. The way I think of it, if God exists, they really don’t care much whether I believe in or have knowledge of their existence (how weirdly small and human would that be?), so I don’t worry about it that much. And yet, God is very much a part of my life. My God is a practice, a verb rather than a noun, a presence or intention, rather than a thing. For that reason, God doesn’t need to exist for me to feel God when I am in fellowship with people who are religious, or when I am in fellowship with people who are secular, forging as deep a connection around a common purpose (usually a cause or mission) as religious people do. And for that reason, I appreciate all prayer. I find prayer – my own prayer, others’ prayers – to be incredibly powerful, whatever form of faith they may be rooted in (religious or non religious). God exists – or doesn’t – but requires neither my faith nor my disbelief. They require my love and my action, and I give that as deeply and freely as I am able.
GREG: Thanks so much for taking this time. I am so excited for the Humanist Hub to co-sponsor your upcoming Boston/Cambridge film screenings. Want to give people all the details one more time? Thanks again!!
JENNIFER: Thanks, Greg! I am so excited to be coming back to Boston and Cambridge for these screenings. I hope you all can invite your colleagues, clinicians, friends and family. See more information below:
Harvard Medical School | Unrest screening and panel discussion with Director Jennifer Brea, Harvard neuroscientist Michael VanElzakker, Research Fellow, Massachusetts General Hospital, and Dr. Rachel Haft, Chief of the Division of Internal Medicine at Mount Auburn Hospital, moderated by Roshan Sethi, Harvard Oncology resident and screenwriter
- Date / Time: Monday, March 26 | 5:30pm
- Location: TMEC 227, Harvard Medical School, 260 Longwood Ave, Boston, MA (View an Accessible Campus Map here)
- RSVP: This event is free to attend. Harvard students, staff, faculty and local healthcare professionals are especially encouraged to attend. All guests must register and present ID. Please learn more and RSVP here.
Brattle Theatre | Unrest screening and panel discussion with Director Jennifer Brea, Omar Wasow and MIT Media Lab Director Joi Ito
- Date / Time: Wednesday, March 28 | 7:00pm
- Location: Brattle Theatre, 40 Brattle St, Cambridge, MA 02138
- RSVP: This event is free to attend. Open to the public – Harvard students, staff, faculty and local healthcare professionals are especially encouraged to attend. Please learn more and RSVP here.