A Disability Pride Journey and Why ‘Inspiration Porn’ is Problematic

Published on: Jul 26, 2021fb-roundtwitter-roundemail-round
 Madeline Jarrett Photo Courtesy of Madeline Jarrett

On July 26, the Americans with Disabilities Act (aka a sweeping civil rights law that prohibits discrimination against people with disabilities) entered its 31st year. President Biden marked the moment by saying: “We passed the ADA and made a commitment to building a nation for all of us, all of us.” And he announced a new program under ADA to help Americans suffering from long-term COVID-19 symptoms and conditions.

Disability Pride Month is not federally recognized, but many cities, states, and orgs, across the country celebrate it with parades and by raising awareness of people living with disabilities. It’s a direct challenge to systemic ableism and aims to destigmatize preconceived notions about disabilities. 

We chatted with teacher and Skimm’r Madeline Jarrett about her experience living with a disability, the challenges she faced in dealing with ableism, the US health care system, and how she found pride in herself. 

Start at the beginning, tell us about your journey living with a disability:

“I cannot remember life without a disability. During fifth grade, I was diagnosed with a chronic degenerative neuromuscular condition called Charcot-Marie-Tooth (CMT). Around middle school, I lost my ability to run. At the age of 12, I had major spinal surgery for scoliosis — a relatively common condition for people with CMT (aka my condition). In high school and early college, I experienced a number of traumatic knee injuries and surgeries. 

Throughout these years, much of my free time was spent in the offices of orthopedic surgeons, neurologists, orthotists, physical therapists, genetic counselors, and podiatrists. Walking became increasingly difficult, primarily due to foot drop (the inability to lift up one’s toes) and leg weakness. I began wearing ankle-foot orthotics to help with walking in my mid-twenties, and now I wear rigid, highly supportive leg braces. 

CMT is a degenerative condition, meaning it gets worse over time. My journey with disability has involved not only physical challenges like surgeries, pain, adaptations, and decline but also the social and emotional challenges that accompany these physical ones.”

 Madeline Jarrett
Photo Courtesy of Madeline Jarrett

What ableist stigmas about the disabled community do you face most often? 

“There are a number of online platforms that often promote something called ‘inspiration porn.’ Inspiration porn often shows stories or images of an abled person helping or ‘saving’ a disabled person, or it might use the actions or accomplishments of a disabled person to motivate abled people. 

The purpose of ‘inspiration porn’ is usually the creation of positive (read: warm and fuzzy) feelings for abled people, rather than on recognizing the full dignity/humanity of disabled people. Inspiration porn is usually detached from work for just and equitable structures and systems for people with disabilities. Inspiration porn also may include the language of ‘overcoming’ a disability. To be frank, I used to be drawn toward this language myself. 

In my high school and college years, when I wanted to dissociate my disability from my identity, the thought of overcoming or surpassing my disability was alluring. However, now that I have more authentically integrated my disability into my self-understanding, I find that this language simplifies and dishonors my identity. In reality, I cannot overcome my disability. It is an integral part of who I am.

I will add that I personally don’t feel uncomfortable when people use the word 'inspiration' to describe my work or story. For me, this word acknowledges that I have been through challenging experiences and that I continue to try to embrace growth. But I don’t tell my story so that others can feel better about their own. This would fall into the categories of ableism and inspiration porn.

I tell my story to make disabled experiences more visible, to claim goodness and dignity in my disabled body, and to help raise awareness about issues of disability justice (like healthcare and accessibility). I think that inspiring stories must go hand-in-hand with the promotion of dignity and equity for the subjects of the story."

 Madeline Jarrett
Photo Courtesy of Madeline Jarrett

What has your healthcare journey been like?

“Until I turned 26 — the legal age limit for U.S. citizens to remain on their parents’ insurance — I took health care coverage for granted. I was privileged to have parents who were able to provide me with good healthcare coverage throughout my childhood, and anything that our insurance didn’t cover, they were able to pay for out-of-pocket. 

The health care journey has been much more stressful since I have had to rely on my own coverage. Over the past few years, my employer’s healthcare coverage plan did not meet my healthcare needs. I have paid thousands in copays, coinsurance, and out-of-pocket costs. One of my biggest monthly payments goes to paying off health care debt that began accumulating many years ago and has continued to grow. 

Even with all of my insurance frustrations, I have been privileged enough to have coverage in the first place. I know of many people within the disability community who have had to sell their homes, forgo further education, or go bankrupt trying to cover their most basic healthcare expenses. Without adequate healthcare coverage for all, especially those with more complex needs, many people in the disability community will continue to struggle to access the resources and dignified lifestyle they deserve."

 Madeline Jarrett 4
Photo Courtesy of Madeline Jarrett

How has ableism affected your life personally and professionally? 

“A few years ago, a random woman approached me in the street to pray over me, assuming I needed and wanted her healing. In high school, I was accused of faking a knee injury to get attention. On the website for my grad school health insurance provider, it implies that coverage for students is minimal because ‘college students are young and healthy.’

During the COVID-19 pandemic, when I was teaching in person during the cold winter, I was required to leave my classroom windows open as part of the school district's prevention strategies. However, because of my CMT, my hand function steeply declines in cold temperatures. I fell behind on emails, lessons, and grading that week — until they provided accommodation — because my hands physically couldn’t navigate my laptop. 

In my workplace for the past three years, there was no elevator available (unless I wanted to walk to the opposite end of the building, technically in a separate entity/institution from the school). In the future, if I ever use a wheelchair, I will be unable to work in (or even enter!) any building that does not have functioning elevators, ramps, and accessible doors. 

An important note about the frustrating side of my disabled experience: Many of my sources of frustration are structurally or socially imposed. Meaning that if our systems were more equitable and accessible, a significant portion of my disability-related burdens (i.e. health insurance, accessible structures, on-looker commentary, ableist work policies) would disappear. Disability justice is, in part, about recognizing and achieving equitable rights and representation in all of our social systems.”

Madeline Jarrett
Photo Courtesy of Madeline Jarrett

Can you tell us about the moment you found pride in your disability for the first time? 

“Although it is difficult to pin down one moment, I remember vividly the pride I felt the first time I wore my leg braces in public. It was a Sunday morning, and my boyfriend and I were going to walk to brunch, which was a couple of blocks away. 

I felt proud to wear them for two reasons:

One: They were helpful in allowing me to actually walk. Walking required so much less strain and energy, they prevented me from tripping, and I could walk much faster with them on. I was so glad for the things my body could achieve with my braces on. 

Two: My braces were a symbol of my experiences. They held a story of struggle and triumph and pain and complexity and hope. While there are still some contexts in which I’d prefer to keep my braces hidden, when I do choose to make them visible, I feel pride in the courage, strength, and self-acceptance they represent to me.”

Why did you decide to start speaking about your disability and disability pride? 

Through childhood and adolescence, I felt ashamed of my disability and the impact it had on my life. I tried my best to hide my experiences, weaknesses, and needs. Frankly, I had a difficult time identifying what my needs were because no one around me had those needs. I often felt isolated in my experiences, as I didn’t know anyone around me with similar experiences. There were no stories of people like me in movies or books. If there were stories, they portrayed pitiable victims or heroic anomalies.

Internalized ableism also contributed to my hesitancy around sharing my experiences or needs. Sometimes, I felt embarrassed about the accommodations I needed (e.g. that I couldn’t participate fully in gym class, or that I couldn’t go on the school walk-a-thon). Or I felt that my needs were an undue burden or inconvenience for those around me. I felt shame in showing any sign of weakness, vulnerability, or difference (especially if that difference might cause a burden for others). 

I began speaking about my disability when I began thoughtfully integrating disability into my identity. In my 20s — thanks to advocacy opportunities I was given, connections I made within the CMT and disability community, and my graduate school classes —  I began to accept that my embodied experiences were a key part of my identity and my story. This was also the same time when I realized that I could no longer hide my CMT. It was an indelible part of my experiences and my identity. With that acceptance came empowerment and strength to own this part of my journey

 Madeline Jarrett
Photo Courtesy of Madeline Jarrett

I decided to start my Instagram account because I believe that I have something unique and important to say about how we view our bodies and embodied experiences. Ironically, finding a healthy and well-balanced means of vulnerably sharing my story, with its joys and struggles, has been incredibly empowering. 

As I began to speak more openly about my experiences, I also began to realize how many people in my life  — including my closest family members and friends — were unaware of the issues and experiences that accompany life with a disability. Reflecting on and speaking about my disability journey has helped me recognize a gap in knowledge between my experiences and intuitive observations and those of the people around me. 

For example, I virtually always notice when there is no ramp or elevator option near a set of stairs. I didn’t realize that other people didn’t notice this until I began to speak about it. I feel called to help fill in the wide societal gap in knowledge about disability with my stories and experiences.

My sense of disability pride began to emerge as I reflected on and told my story. I began to take pride in the strength and resilience of my body in getting me through a variety of difficult experiences. My pride is not necessarily connected to my physical strength. (Note: After each injury or surgery, my ability level usually declines.) Rather, it came out of connecting to the inherent goodness of my body, which I realized could exist alongside pain and decline. 

This pride feels especially important because disabled bodies are most often perceived — even unconsciously — as less valuable, inferior, and/or pitiable. To recognize and claim strength and wisdom in my body rejects these ableist perceptions. 

Disability pride rejects the hierarchy that claims that certain bodies are better or more valuable than other bodies. A person’s ability (or gender, or race, or sexuality, or religion) does not correlate with value. My disability pride reminds me that beauty, pain, goodness, struggle, strength, weakness, confidence, uncertainty, and wisdom can exist all at once in my body.

For more from Jarrett, follow her journey on Instragram.

Skimm'd by Kamini Ramdeen and Karell Roxas


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