It was a Friday night and I was getting ready to go out, fancying myself up for the first time in what felt like a long, long time. My hair was in curls, I put on makeup, and I picked out a gray knit dress with black birds flying across the hemline. I reached for the zipper running up my back, but no matter how I twisted or turned, I could not reach it.
The longer I live with ankylosing spondylitis, the more restricted my mobility becomes — and this inability to reach large portions of my back is the newest limitation.
At first, I was frustrated. A rush of negative thoughts stampeded through my mind:
I’m not going to be able to wear this dress to go out.
What if I’m never able to wear this dress again?
What if I’m never able to wear dresses like this one at all?
I found myself on the brink of tears, worked up and emotionally spiraling. Taking a deep breath, I calmed down, reminding myself that this obstacle was simply that — an obstacle — and that it provided me an opportunity to get creative.
Using Creativity to Manage Chronic Illness
“Improvise, adapt, and overcome!”
I was married to a U.S. Marine for a number of years, and this was a motto I heard frequently during that time, often accompanied by my ex-husband pulling out a roll of duct tape or a handful of zip ties. Now this phrase echoes in my head when faced with obstacles related to my disability.
In a world designed for able-bodied individuals, with few accommodations made for those with different needs, learning to improvise and get creative becomes essential for those living with disabilities. We are repeatedly faced with situations in which we need to think in unique ways to access things, meet our needs, or be able to do what we want. Simple things that other people may not ever think twice about (like zipping up a dress) become puzzles that disabled people need to solve.
Now several years into my disability, it is almost second nature to immediately start improvising and internally brainstorming creative solutions when faced with an obstacle. However, when I first became disabled that certainly wasn’t the case. I would feel defeated when obstacles would present themselves. I would easily get caught up in frustration at the way my body was now acting, which was so different than the ways it used to.
Learning to accept my body and its limitations — as opposed to fighting against them — opened up the doors to creative possibility. No longer trying to resist my limitations and powering through obstacles allowed me to begin thinking in new ways about my body and how I could navigate this world.
A Community of Creatives
As I began this journey, one of the biggest helps for me was other disabled individuals who I saw being incredibly creative. In online disability groups I witnessed others asking for suggestions to problems they came up against, and I saw others sharing the excitement of learning a new creative way to navigate something. I began actively participating more in these online communities, asking for ideas and exploring social media for inspiration.
Just search #disabilitytok on TikTok or #disabilityhack on Instagram (or a number of other hashtags) and you’ll find posts of disabled individuals displaying their creativity. From showing magnetic snaps on clothing for someone with hand paralysis to floor pillow work stations for someone with spinal problems who finds it painful to sit in traditional chairs, social media displays the many ways that disabled people use their creativity to overcome obstacles.
Laken Brooks, who is hearing impaired and chronically ill, has gotten creative by using transcription apps meant for things such as Zoom calls as a subtle way to follow a conversation. Additionally, she’s found creative ways to deal with her anxiety and ADHD.
Brooks had found that coloring was a great way to ground her when she was experiencing symptoms, but carrying a coloring book wasn’t always practical. “Recently,” she told me, “I got a tattoo with a geometric mandala outline [a symmetrical design often found in adult coloring books]. This simple tattoo is my personal, portable coloring sheet. I almost always carry a couple of Sharpies, and I can use markers to color in the design. I’ve literally engraved a self-care tool on my skin to make sure it’s always available to me.”
Karin Hitsselberger, a writer, activist, and social worker who has cerebral palsy, writes in her blog Claiming Crip about how she has managed to use duct tape to repair mobility aids and how she gets creative with navigating the world in her wheelchair.
I reached out to Karin to get her thoughts on how she’s relied on creativity to maintain functionality. “Disability breeds creativity, because every day I have to find a way of doing things that’s different from the ‘normal way,’” she told me. “[It] is a natural, but often overlooked, side effect of living in a world that is not built for you and a world that doesn’t naturally and readily accommodate different ways of doing things on its own.”
Finding Pride in My Creativity
As I reached out to my community and saw other disabled individuals using their creativity, I too was able to get more creative in my own life. When I struggled to clean my bathtub due to back pain and spasms, I tried several things until I learned I could use a disposable toilet wand so I didn’t have to bend. When I was using public transportation because I was having seizures that made it unsafe for me to drive, I figured out ways to navigate a bus with a rollator (a wheeled walker) and a week’s worth of groceries and still be able to carry my coffee too.
On that Friday night, the dress and its zipper weren’t something to get upset about. They were yet another obstacle, and as such, another opportunity to prove to myself how determined I am and how imaginative I can be. And so, after taking a deep breath, centering myself, and letting the momentary frustration and negativity go, I grabbed my sewing box and got creative. A small safety pin, a decorative ribbon, and a bead later, and I have a zipper pull that not only allows me to get into my favorite dresses, but that also looks beautiful at the same time.
Each time I improvise and use my creativity to overcome an obstacle my confidence grows a bit more. Instead of being steeped in internalized ableism — thinking me or my body is the problem — I’m able to see that it is truly our society’s problem in that it isn’t accessible or inclusive of disabled people. Instead of fighting against my body I can collaborate with it to find ways to navigate this world — despite its inaccessibility — in new and creative ways.
Every time I do that, I feel a bit more pride. I’m proud of the things that I, and my body, can do.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.