Last December, James Dooley Sullivan packed his wheelchair and travelled to Jamaica. The Caribbean nation is a tourist destination, but the trip wasn’t a vacation. Sullivan, an animator and visual arts video editor at the World Bank Group, wanted to see first-hand what it’s like to be disabled in a developing country. He shares his experience and his own history in a video and a series of blog posts.
Life in a wheelchair is pretty straight forward – it just requires a different set of verbs. Each morning I transfer into my chair, roll into the bathroom, and flip onto the toilet. I transfer back into my chair and then wiggle into professional attire. I drink enough tea to become civil before descending on my house’s external lift to the sidewalk.
After I heave myself into my car, I must disassemble my chair one wheel at a time and heft each part onto the seat next to me. After parking, I reassemble my chair outside the car door and transfer back into it. Elevators lift me to the ninth floor of the World Bank headquarters in Washington D.C. and wide doors swing open to my office workstation, where I’ve been editing the most important video I’ve ever produced. A year ago, my colleagues selected me for a travel award and I chose to go to Jamaica to do a story about how disabled people like me manage their days in a country struggling to provide even basic services.
My actual journey has been much longer of course – involving countless doctors, rehabilitation, relearning basic skills, learning new skills on a computer and getting a job that I enjoy. Sixteen years ago, I was a student living in Italy for a semester abroad. On February 9, 2001, I ran off course on a snowboard and was rapidly decelerated by dense alpine trees. I landed face down in the snow and immediately could not move or feel my body. Not good.
As I lay there, I had flashes of Superman actor Christopher Reeve, thinking how he pursued a cure for a spinal cord injury. I remember being flipped over and put into a sled and guided down the slope to a helicopter. I remember the helicopter turning on and off, and the gentle bearded face of one of my rescuers just before blacking out.
My mom flew to Italy immediately and was by my side when I woke up, but I spent a week in and out of consciousness, hooked up to all sizes and kinds of tubes and beeping medical equipment. I was gingerly loaded into different machines to gather imagery of my broken spine. I was wheeled into a bright, clean, surgical theatre. ER nurses carefully inserted giant painful needles that would knock me out. Pins were put into my left leg to let the bones heal, and a titanium plate screwed crushed vertebrae back into alignment.
When I got injured I had been studying Italian for only five months. In the hospital, I became fluent. But not grasping every detail of the discussions around my bed was a massive blessing in disguise. I was never told I was paralyzed until I eventually asked my doctors. By then I had time to adjust. If I had been injured in the United States, I would have been told immediately. Delaying this hard fact-of-life gave me the mental space to start adapting to the new world I was entering.
As the news sank in deeper, I ended up having a good cry with my mom. Days later, I was sitting up in a clunky stainless-steel hospital wheelchair, and needed to blow my nose. Without thinking about it, I pushed myself, with great effort, around my bed to grab a tissue. I did it all by myself.
Being dependent on other people to wipe your nose, feed you, and help you get to the bathroom creates a sense of helplessness that can grow into something unhealthy. Once I realized I would not be walking again, I did not want to waste any time trying to walk again. I skipped ahead to wanting to be able to support myself and lead a normal life, but on four wheels. Americans, myself included, take our independence very seriously. It’s tied to our history and our social norms. I have been able to achieve independence because I live in a country that provides support to the disabled and because I’m surrounded by the love of my family, friends, and colleagues.
Back in America, I was admitted to a rehab center and slowly regained strength. I learned how to do everything from a seated position. Because of the nature of my injury, I cannot control my stomach muscles and, while I can push a manual wheelchair, I end up doing many things one handed, as my other arm is being used to keep my body upright.
The reality of this hit me hard my second night home, when I couldn’t get into bed and toppled to the floor, completely helpless. As I tried and failed to lift myself off the ground, I started to cry. Desperate to raise an alarm, I scooted over to my stereo and cranked up the volume until my parents sleepily stumbled into my room and helped lift me back into bed, where I lay sobbing. The next day we rearranged my room and got blocks that would give me a lever to pull myself up should I fall. Sixteen years later, I am actually strong enough to get off of the floor on my own, but I still have the boxes under my bed because that trauma from the first week at home still lives with me.
My other lesson during those first weeks at home is that my body does not tolerate the brutal heat of a Washington D.C. summer. The nerves in my spine no longer send signals that trigger sweat. Every time I see a dog panting in the summer heat I nod my head in sympathy. I was readmitted for the fall semester at Georgetown University with a full course load and moved with my two roommates to a wheelchair-friendly apartment on campus. Hosting parties, cooking meals together, and all that comes with campus life helped to keep things interesting and prevented me from focussing on my crappy body.
I am inherently a glass-half-full kind of guy but, looking back, it is clear to me I was in fact depressed, eating far too many Chinese dumplings, and quite uncertain what I was going to do after school was over. Hospitals and colleges are great places to begin to heal because they provide structure. Being truly free of any schedule, without a job or income, was a recurring nightmare.
Fortunately, I had been editing videos prior to my injury and sitting in front of a computer is something I can do while sitting down. After graduation I got an internship at a local video post-production house blocks from my home where experts graciously shared their knowledge with me and taught me new skills. In addition, the Americans with Disabilities Act was passed decades before I was paralyzed. My office had a long ramp that enabled me to easily enter the building. I was seen as a normal intern and was in no way treated differently because I worked from a wheelchair.
My nightmare never came true. I had not only found a career and a way to support myself, but I didn’t encounter the physical obstacles and social stigma I had feared.
And that’s why I chose to travel to Jamaica. It’s a World Bank Group member country that passed its own version of disability legislation in 2014. But since the law is still brand new, Jamaica illustrates the hardships and obstacles faced every day by people in wheelchairs, as well as citizens who are blind, deaf or otherwise impaired.
Working for the World Bank, I strive to help raise the bar for disabled people living in poorer countries around the world. They deserve the same opportunities as I’ve been afforded and to be treated with the same dignity and respect I earn every day.
But maybe more importantly, they also deserve to live with the same hope and sense of purpose that I was given. I don’t look at a barrier and say, “Oh, I can’t do that because of my chair.” I can almost always find a work around. That’s my mindset and I have it because I live in a community that encourages my efforts. Being disabled is not only a physical battle. It’s a psychological battle. And I want to show the world that we all can be productive, enabled and proud – if given a chance.
So with that in mind, I packed up my camera gear and boarded an Air Jamaica flight to a neighboring country, that’s another world.
Read Part two | Part three
Very interesting, good job and thanks for sharing such a good blog.
I am sorry that I didn't see this blog sooner, James. It's a great eye-opener.
I was in a wheelchair for 3 months last year. I was told to expect both excruciating pain and full recovery, so I had prepared my mind for that. It was timebound, I had great health care, and I could deal with the feelings of helplessness and the pain.
I was kind of ready for how difficult it is to move around in a wheelchair. I knew that DC side-walks are bad, that I couldn't get into tiny store or climb stairs to a restaurant, etc..
However, I was not prepared for how difficult it actually is to move around in a "wheelchair-accessible" environment. I had my apartment pretty much under control, but the outside world was rather complicated. Everything required planning and I am not the best planner. Taking the bus was hard: I found going down the ramp particularly scary and if people are parked "a little bit" inside the bus stop, then the ramp can't safely be deployed (people: please don that that :)). Going to one of my favorite restaurants' bathroom was hard (the doors are so heavy that I couldn't get in and out by myself). It's great to have a ramp to reach the door of Starbucks, but not so good when the door has to be pulled to open (from the ramp). And so on and so forth... A lot of details that people don't think about. The set up is there, people have thought of "everything" except... that little detail like, how to actually open that one door... I recently moved into a building which is "wheelchair-accessible" from the side-walk through a a rather narrow and tortuous ramp. I was rather upset with myself for only noticing it after I had moved into the building: it has only been 1 year and I have already lost awareness. This is the easy stuff. We can do better, in the US and all over the world.
Thanks again, James, for the great work that you are doing and for sharing your experiences!