We Are All Disabled
As a young girl, my favorite past time was giving inspirational speeches about hope and justice to the captive audience of dolls in my closet. I would quote Martin Luther King, Jr. and Holocaust survivor Corrie Ten Boom. I would rally the crowds like an impassioned Southern preacher before my mom would call me down for dinner. The plight of the disenfranchised had always broken my heart and motivated my actions. I guess it’s not surprising that my childhood play evolved into my current life’s work. Today I encourage crowds and advocate for the hurting, but with one notable addition I never could have foreseen in my childhood: I do it all from a wheelchair.
When I was 26, out of the blue, I suffered a massive brainstem stroke caused by an AVM, a rare congenital malformation of tangled blood vessels of which I had no warning or symptoms. The malformation surrounded my brainstem and filled my cerebellum, over half of which would be removed in a life-saving brain surgery that took place in the hours following my stroke. What’s more, my AVM contained four aneurysms and was the largest the UCLA neurosurgeon on call had ever seen. He told my husband, who held our sleeping six-month old baby in the ER waiting room, that I would likely not survive the day.
I did survive the day, and I have now lived nearly 12 years of second-chance life. I spent forty days in ICU on life support and another year and half in in-patient brain rehab relearning to walk, talk, and eat. Even to this day, those abilities are nothing like they used to be. Eleven surgeries, a broken leg, unrelated brain issues, and a host of deficits remain. From deafness to double vision, facial paralysis to lack of fine motor skills, impaired balance to muscle coordination, my disabilities mean communicating is different, walking is difficult, and driving is altogether out of the question. Yet since my stroke, I have had another biological baby and, with the help of my husband, I offer my story and the lessons we’ve learned to people with broken bodies, brains, and hearts through our writing and speaking.
Despite my lifelong advocacy of the underdog, I found myself distraught at the notion I would now be the miracle girl in the wheelchair in the early days of my new normal.
I was happy to be a miracle and happy to share about it, but I could not wrap my mind around identifying as a bonafide member of a disenfranchised population, rather than just an outside ally and encourager.
Only when we were asked to speak at a camp for families affected by disabilities did that wounded paradigm start to shift and heal. At the camp we heard stories of other people whose lives would never be the same after their spouse had an accident or their child was born with a genetic condition or they were diagnosed with MS. We were the speakers, but we could have been the campers. These were our people. They uniquely understood what it felt like to navigate a world not made for them. I felt a new and electrifying call on my life to do what I had been doing since I was a little girl: encourage and advocate for the hurting, but this time, I’d do it from the inside.
Seeing the world from the vantage point of a wheelchair has been eye-opening and shocking. The inaccessibility, the indignity, and the thoughtlessness have been painful but also intensely motivating. And yet if a person with actual disabilities, like myself, had difficulty associating herself with the story of disability, how much more so would the typically abled community?
From the beginning of my speaking career as a woman with disabilities, I’ve attempted to connect with my majority non-disabled audience by opening each talk with this provocative statement: “We are ALL disabled.” At first the audience might bristle or be confused by this claim, until I continue. “Some of us sit in physical wheelchairs, but we all have invisible wheelchairs inside.” Then I often recite a litany of experiences that probably resonate with every member of the audience: “Who among us feels truly free, even when she can walk and drive on her own? Who feels fully beautiful and desired, even when her face is not paralyzed? Who feels heard and understood, even without a speech impairment and dear ear?” The answer is a resounding and rhetorical NO ONE. We are all disabled. And thus, we need each other.
In my experience, that simple re-framing has been the key to taking an inspirational story and making it a personal one. It has invited a non-disabled audience to look at their lives through a new lens and consider how every person is situated on the same spectrum of limitation, rather than in the black and white of disabled or abled. The typically abled majority will never effect lasting change for the minority until they see themselves in the story of the other.
This invitation for a non-disabled audience to own their arc in the story of disability starts to break down the binary and expand our hearts. Then the motivation to help each other becomes less conceptual and more personal, no longer one-sided but mutual.
Our struggles, whether obvious or invisible, do not have to end in isolation but rather can be the beginning of true connection.
In theory, the universalizing of disability might seem to dilute the hardship of living a disabled life. In practice, we’ve found the opposite to be true. We ended up taking over that camp for families with disabilities where we were once the speakers, the camp where our perspective changed so dramatically. And instead of inviting only individuals with disabilities or people with one type of diagnosis to create this community, we invited entire family systems experiencing any kind of disability to find rest, resources, and relationships there. Last year alone, thirty-three different kinds of disabilities were represented among our campers, who ranged from newborn to seventy-eight years old. Hundreds of campers got to experience both a wide spectrum of struggle and a shared throughline of strength. They got a chance to remember that disability doesn’t look one particular way and thriving doesn’t come from one particular place. When we let each other in on the realities of our hard stuff, comparison is lost and a new perspective is gained. We recognize, “Well, if they can do it, maybe I can too,” no matter what “it” may be.
This kind of brave sharing of suffering translates to the typically abled community, too. Solidarity is born when we agree to destigmatize inability and invite each other into the beautiful possibilities of interdependence. When I operate within a scarcity mentality, I catch myself fearing that opening the doors to the disabled experience would mean losing a bit of the hard earned exclusivity and preciousness for myself. But when I live from a place of generosity and connection, I’ve found that opening up doors tends to bring in more light and life and access to any space.
I don’t own the story of loss and marginalization and disappointment. It can belong to all of us. In fact, it’s a better story when it belongs to all of us because then we believe more fully that the story is not over yet.
While I’m giving all my talking points away, I might as well tell you another: “We ALL have a seat at this table together, but some of you will need to hold the door open so others of us can wheel into the room!” If the disabled and typically abled communities agree to both mindfully extend and graciously accept the invitation to the communal table, we will gain things we desperately need but couldn’t find on our own. An untapped healing and an unstoppable hope. A newfound knowledge that we’re not alone. A slower pace at which to move through the world. A vulnerable space to tell our stories and listen intently to others. An embodied practice of looking into the eyes of a stranger and seeing ourselves reflected back. And in so doing, we can deny the lie that the good experience and the hard experience belong to two different people. We can disrupt the myth that joy can only be found in a pain-free life.
