The revolution must center the most disabled of us
I had a terrifying dream last night. In the dream, a therapist was injecting me with syringes in order to make me be more productive. In the dream, other people with disabilities were being rounded up and made to take drugs with huge side effects in order to work faster. I woke up with an urgent feeling inside me. The therapist was my own healer within and I often push myself to work harder when I am tired. It was a message for me to stop expecting the tired, worn out parts of me to produce on demand without mercy. I have an invisible disability and despite my acceptance of it over time, I still struggle immensely with being kinder to myself for not being able-bodied. The dream told me clearly: treat your disability with tenderness and respect. Treat your disability as a source of wisdom, rather than an impediment to keeping up with an impossible pace.
In Syria over 27% of the population, or 3.7 million people live with disabilities. The Assad regime’s siege and genocide, along with multiple international militarized forces occupying Syria, have directly contributed to this number, which is almost double the worldwide average. It is no secret that living under war, siege, and debilitating systems of oppression cause huge environmental and health impacts. A family member of mine used to practice traditional Arabic medicine in Eastern Ghouta after the Assad regime’s chemical weapons attacks. She described to me how thousands of children had missing limbs, breathing difficulties, and experienced a huge upsurge in various forms of leukemia and cancer from the radiation. I know family and community members with disabilities as a result of being in extreme situations of trauma and stress in Syria, children who are no longer able to speak because of what they have seen. Many refugees receive asylum on the basis of seeking treatment or support for medical conditions the war caused.
In Syria, people have created innovative spaces for people with disabilities in the revolution to express themselves. In Idlib, over 175,000 Syrians live with disabilities. According to Ennab Baladi, the “War-Disabled People’s Association,” collective was founded in Idlib by disabled Syrians. They provide psychosocial support for disabled members, and insist on the right to live active lives. They created the facebook page “My Injury is not a Handicap,” to reframe narratives around disabilities in a way that does not see them as deficit. In the Western countryside of Aleppo, Ms. Noor al Huda Hifar reopened a play-therapy based school for children with special needs, even after having to flee the city of Aleppo in December 2016. She centers children with disabilities and creates a safe space for specialized therapeutic forms of education. Ms. Noor says that “in the streets, at home, people call these children handicapped (“معاقين”). But we want to change this view. Understand instead that these children have special needs and special abilities.”
In the space Ms. Noor uses arts-based and play therapies. She herself has fled a regime that forced her out of her home, and from her decades long skillsets as an educator, she carried her knowledge of how to center disabled children into a new space. These are the kinds of spaces we all need for a more vibrant, more beautiful world.
I want to write from an embodied place. I have a disability called narcolepsy. A scan of a narcoleptic brain looks the same as someone who hasn’t slept in 72 hours. Imagine the most sleep deprived you’ve ever been in your life- that’s me, everyday. I adhere to a strict diet, rest often, exercise when I can, keep a strict sleep schedule, don’t over exert myself. (All of which is a privilege- if I wasn’t a PhD Candidate with access to a fellowship that paid for me to write, I would not be able to do any of those things, and many disabled people under capitalism cannot access what they need because well..they’re disabled!) I have to constantly manage my energy and plan around it or else I risk the consequence of collapsing mid sentence, having a seizure from severe sleep deprivation, hypnogagic hallucinations, severe anxiety, extreme sleep debt and then getting sick because my immune system has shut down as a result. For a long time I spent going from doctor’s offices to hospital rooms to sleep studies and heart monitors just to figure out the best course of action. It used to feel like a constant fight against my fatigue. At its worst, sometimes it meant that the line between reality and my sleep world was constantly blurred, and everything felt like a dream. My memory could get really distorted, I would have intense sleep paralysis, body pains, and disturbing visions.
It sounds cliche but I love living life to the very fullest and I used to feel resentment toward people that never had to consider what it might be like to have to navigate, coordinate, and hustle behind the scenes everyday just to stay afloat in an ableist system. It felt like I was working twice as hard to “keep up.” I used to take different kinds of medication for it until I managed to switch to herbal and holistic based practices that I keep up with religiously. In college I was secretive about my disability and it was not yet diagnosed officially, but everyone in my friend group knew I loved to nap and we bonded over our shared love of resting. We would grab our blankets and lay out on the grass or pile up in the dorm room for an afternoon siesta whenever we could. It was an inherently disability-centered friend practice, because it meant that we were all giving each other space to show up how we needed to, and attune to our rest levels in a way that made space for all of us to feel included. It happened organically, and to me it demonstrates exactly the kind of beauty that emerges when we center disability, because when one friend was given space to recharge, it gave all the friends dealing with their own fatigue and emotional and physical struggles space to recharge together.
In my father’s village in Syria, when someone with autism, epilepsy, or Down Syndrome is born into a family, there is a saying. Kan 3al barakeh. This translates to “he or she is [born] a blessing.” Meaning, it is a blessing from God to have this person in the community. The family is blessed by having this child because they are so beloved and necessary to the whole society. This is not to romanticize the conditions that disabled people have to navigate back home, which are incredibly difficult depending on the circumstance, but rather to point out a significant paradigm shift. Having a child with a disability is a blessing to the entire community, simply because they exist. They teach us all how to be more compassionate, more aware, more tender with each other. They carry special gifts and wisdom. This is a drastically different perspective from the way disabilities are framed in global northern societies, as a hinderance, as something inconvenient to accommodate, as a catastrophe, as something to pity. What if, in global northern societies, the paradigm was shifted in this way? Where instead of being seen as a burden, as an impediment, the disability itself was seen as a blessing, something that we all learn from and can cherish.
I don’t believe that narcolepsy is my disability. Living in a white supremacist, capitalist, ableist, patriarchal society is what disables me. In fact, narcolepsy is my superpower. Harriet Tubman was said to have narcolepsy, and it was because of her vivid visions from narcoleptic episodes that she was able to point her communities toward freedom. If I lived in a society that centered the wisdom and knowledge that having a disability gives you, I would experience narcolepsy as the gift that it is. It is a gift because it teaches me to see the world differently. I never assume what people are going through, or the invisible battles they might be fighting. I never assume that someone has a “bad attitude,” or whatever, because they are probably just depleted. I have vivid, lucid dreams that point the way to the future. I have travelled in between realms while having seizures, which gives me a different perspective on life. I tend to notice things that other people might not.
Back in Feb. 2018, I attended an organizer’s conference where, for the first time in an activist space, I felt accommodated. With the urging of my sister, I had told the organizers that I could not attend an all-day back to back schedule of events without a place to rest. The organizer made a special concealed area with a divider. She rolled out a whole twin bed in that space so I could rest behind the divider during the events. It also served the mothers at the conference who needed to step out and breastfeed or needed a place where their kids could be. It was the sweetest gesture and took a lot of labor to coordinate. At the same time, I couldn’t help but think — what if my disability was not something that was accommodated, but rather centered? If people with disabilities are centered, everyone benefits. Think about it. What if instead of making a secret area off to the side for my own private break, the entire schedule was shifted to where everyone had a break. To where everyone had time and space to rest or do what they needed to, as part of the program. To where everyone was given access to mats and pillows, and a window of time to relax & recharge. Mothers with children would benefit from that. People with diabetes would benefit. People who are smokers and need a break would benefit. People who have PTSD and become triggered or stressed from overexertion would benefit. People with depression & anxiety would benefit from having space to decompress. Elders would benefit from having a moment to slow down. In fact, everyone with racial and sexualized trauma would benefit, because we would all be given a margin of space to recharge, rather than have it be something off-to-the side you have to specifically seek out. When we attune our movement spaces to the needs of people with disabilities, and center them, rather than place them off to the side somewhere, we all benefit.
This is a concept my sisterfriend Cameron Carter, a teacher and disability pedagogy specialist for preschool age children taught me. She has based her research on disability centered pedagogy at Columbia from her lived experience with navigating her own disability. That if a child with ADHD needs fifteen minutes extra on the test, rather than singling them out for extra time, give all the children fifteen minutes extra, and then each child can have a margin of space to finish. So in organizing meetings: if someone is running late, or needs a 10 minute break, or can’t stay on Zoom for 3 hours until their eyes are numb — give everyone a break too! Instead of adhering to impossible deadlines, try to be more flexible! Instead of participating in actions that might put disabled Black and Brown children in harm’s way, make a circle of ablebodied white people at the front to protect them. Think of the most disabled person in the community and start there. Is it accessible for your deaf brother? Is it something your sisterfriend in a wheelchair could feel safe and welcome attending? That doesn’t mean to assume what they need either — they should be in the space to begin with and given space to share their needs. And if they are not, act as if they would show up, and plan accordingly. There are always people constantly operating with invisible disabilities, so centering disability needs and creating strategy from that place is a way to welcome them in. Keep snacks and water at our actions. Hold living room protests like the women of Darayya and Hama did in the Syrian Revolution when it was unsafe to go out in the streets due to the government bombing the protesting areas. This is where you record yourself using creative banners and slogans to anonymously (if it’s unsafe to be seen) protest inside your living room, then upload it on YouTube. This also creates a living archive of your protest for the future so that others can access it. In Syria, when the totalitarian government shut schools down and bombed local hospitals, women created sanctuary spaces for children, mothers, disabled, and elderly people to commune in and used arts practices to protest while they were under siege.
I’m not saying to stop doing what we’ve been doing- I believe in organizing, protests, shouting into megaphones, and standing against power. I think it’s about reshifting those strategies and adding new ones so that everyone can participate if they want to. I’m thinking of the herbalist collectives in Lebanon and its diaspora like SWANA Ancestral who responded to the Beirut bombings by providing herbal support for trauma & herbal guides to people on the ground. Thinking about ways to center the earth, plants, children & disabled people of color including children first. As a former organizer I know how much labor goes into planning actions, meetings, events, conferences, retreats, and it can be tough to manage everyone’s needs. But not if you start from that place! (Ie you can always say: “Maybe a conference that starts at 8am and runs til 6pm is not a good idea comrade, can we think of alternate ways to accomplish the same objective?”). I’ve been in so many activist spaces that operate according to grind culture logic and I don’t know how to tell you that is not how we get free.
There are so many strategies to consider. And it is no coincidence that Black women visionaries such as Tricia Hersey of The Nap Ministry are examining the rest as a form of reparations and resistance for Black people in the U.S. A vision for a world outside of capitalism and ableist, racist, sexist oppression will only come if we listen to those who have historically struggled the most in its targets. The entire system of capitalism in the Americas and worldwide was built on the Transatlantic forced migration and kidnapping of millions of West African people, and Black women’s labor became a central force that the empire exploited for profit. The current formulation of capitalism was rooted on and built on disabling the bodies of Black African and Native people and punishing/discarding them after exploiting their life force for profit, especially if they were already disabled. Capitalism is inherently an ableist system, and a lot of disability studies scholarship doesn’t seem to understand the direct connection it has with race and gender. Resting and centering Black women’s right to rest is a liberatory practice that undoes the logics of capitalist ableism at its root and creates spiritual and physical healing in the form of reparations.
If our movements inherently exclude the most disabled among us then they are not creating the kind of change that includes everyone. What would centering disability mean in the era of COVID and late racial capitalism? (Leah Piepzna-Samasharna’s article “Disability Justice Survival Strategies for the Current Moment” offers some important pathways on just how to do that in the U.S. current reality). If society were structured in a way to center with people with disabilities, life would be better for all of us. And often times the ones dealing with disabilities are at the crosshairs of racial, class, gender, and other forms of oppression. They embody the wisdom and the knowledge of how to make better worlds, because they are navigating the parts of society that able-bodied people may never fully come to understand as inaccessible.
