Libby Federici
When I first started to think about how I might construct a piece of writing on my relationship to disability, a number of people, places, and topics flooded my mind and my heart. For months, I have reflected on the various ways my life has been touched by disability, for better or for worse. I have been lucky to connect with disabled students at Harvard from all walks of life. As the 2018-2019 Disability Disclosed co-chairs wrote so eloquently in last year’s issue, “each and every person in any disability community experiences disability differently.”
Chronologically in the story of my life, I think first of my brother, who lived with a number of physical disabilities from his birth until his untimely death during our childhood.
Next, my mind most often wanders to my own struggles in school; from the flourishing of my intellectual curiosity during my time in a non- traditional classroom, to the squelching of it during my adolescent years, and the punitive responses to my academic failings in traditional learning environments. Where does the disability end, and where do I begin?
In more optimistic reflections on my childhood in a public school system, I reflect on my time during elementary and middle school in integrated classroom spaces, in which students with varying abilities and disabilities learned together; sometimes for “special” subjects like music and gym, but also for courses like social studies and science. Still, in these integrated learning spaces, I felt pressure to “pick;” did I want to sit and eat lunch with the students with whom my brother and I identified, or did I want to sit with my “normal” friends? There would be consequences either way, I learned.
In my adult life, I find that describing life with chronic illness is perhaps the most difficult thing about it. In many ways (or at least, in my case) it is evasive and enigmatic. Identifying it, naming it, diagnosing it, finding the right care providers…it is, to borrow the words of the singer-songwriter Bruce Springsteen, like dancing in the dark. To carry on with normal activities requires a very intimate and particular form of self-care. It requires a knowing of one’s body that goes beyond even the touch of a medical professional. It is a kind of knowing that alerts me when something is wrong, even if someone on the outside could not see it. It is the I need to lay down right now feeling that will unapologetically interrupt any social engagement, pressing deadline, or 8-hour shift.
The American healthcare system scarcely allows for any kind of labored investigation into pains that cannot be named. Our system is not only an impatient one, and an overcrowded, overworked one, but an expensive one. The journey to find relief is long and arduous, and each stop along the way will come with a large price sticker. For those without insurance, the journey may not be worth taking in the first place. It becomes monotonous and exhausting, not only the presence of the illness itself, but the seeking of care and treatment. Like any appointment, it almost always goes something like this: I give my name and my birthdate at the counter. I sit down on a plastic chair and wait. I am called in, I will be weighed and measured, and my blood pressure will be taken. More plastic chairs. More waiting. Sometimes I have to remove my clothing, perhaps for a doctor I’ve never met before. By the time the doctor arrives, I’m nervous, but I feel ready to present my case. Perhaps unlike other doctor’s appointments, I have notes. I have pictures and videos of my symptoms flaring up. I have records from other doctors, spread all over the country through different chapters of my life. I have printed lab results. I have prescriptions from years past. This time could be it; this could be the beginning of figuring this out, I think. My dad’s voice joins mine. We just have to keep at it. We just have to find someone who will listen. I think he feels guilty. He knows it is his genes that fail me. But I am almost always hopeful.
“What brings you in today, Elizabeth?”
Where to begin? No way to know…but I do. I take a deep breath, and begin five years ago. How to recount five years of bodily pain in just a few minutes? I try my best. I start with the first morning I woke up, five years ago, and felt that my body was not the same. Here’s what happens, here’s what I’ve tried. Here’s what I’ve stopped eating. Here’s what I’ve eaten more of. From ophthalmology to rheumatology, I’ve been there. Here’s how I’ve tried to control my environment. Here is everything I have done. I have done everything. Take it. Heal me.
And then I hold my breath.
“Hmm…that really is strange. I can’t imagine what could be wrong with you.”
“Are you on your period?”
“Well, it sounds like you’ve been living with this for a long time. A couple more months shouldn’t hurt you, until we can get another appointment.”
It stings. I hold my breath again and hope that he doesn’t ask me if I’ve seen a psychiatrist. Please don’t think I’m making this up. My hopes come crashing to a halt again, as another person with a wall of impressive degrees looks at me with bewilderment. They take more blood. They take more urine. They set up another appointment, and then I am free to go. If I’ve managed to hold back tears for this long, they’ll certainly come now. Springsteen’s raspy voice comes through my tangled headphones, making me feel like I’m in my parent’s kitchen.
Hey there baby, I could use just a little help… You can’t start a fire without a spark. This gun’s for hire, even if we’re just dancing in the dark. We have for so long been afraid of the word disability. “We are all disabled,” I’ve heard in academic settings. “Disability is a spectrum.” The ease with which we move from identifying structures as the problem, to assigning everyone in the world a disability is baffling. I’ve found that this often results in an identity-seeking scramble, where one attempts to place oneself somewhere on this “spectrum.” Where do I fit, between the letters that look like numbers and the illness that won’t get better? Where do I fit, between my brother and my friend with terminal cancer? Where do I fit between my friends and family members who are blind, who use wheelchairs, who have Down syndrome? Can we all possibly be part of the same community?
I’m not certain that I have answers to these questions. If I did, this piece would certainly be a lot longer. I do know, definitively, that this is a community with a range unlike any other. It is a community that says, “come as you are, there is a place for you here.” A conversation about disability, like so many big conversations, cannot be without acknowledgement of race, class, and gender. We may feel compelled to draw more lines, to separate ourselves more, to believe we have nothing in common. I have found that disability can be both a uniting and dividing force, in this way. What could we possibly have in common? I can see with my eyes, and you cannot. You are hearing, and I am not. I can walk without support, and you cannot. You can complete your multiplication tables in a minute. I will take an hour.
I believe that we are unified when we recognize each other’s lived experiences as wildly different. They are different, and yet equally valid. Our stories hold equal importance, though the wounds they carry may look nothing alike. When Springsteen sang about “dancing in the dark,” he lamented a life he felt was devoid of meaning. The singer reaches out for meaningful companionship while wishing that he could remedy his imperfections (Man I’m just tired and bored with myself…I wanna change my hair, my clothes, my face). What can we do about this melancholic desire to fit in? How can we find meaning in the parts of ourselves that don’t quite make sense? Must we change ourselves in order to find community? I think of the “spark” that Springsteen writes about as (big C) Community. And, as the denim-clad singer songwriter tells us, we can’t start a fire without a spark. Despite our varying needs, abilities, and methods of communication, we need one another as allies and advocates. We must work to amplify one another’s voices, support each other’s movements, encourage each other’s activism. There is a place for our bodies, there is a place for our languages, there is a place for our knowledge. We will press on, together, even when we don’t have all the answers, even when the lines are blurry and the labels are messy. Even if we’re just dancing in the dark.