Disability, Shame, and Cultural Perception
A touching personal narrative evaluating learnings after a diagnosis with Ehlers Danlos Syndrome.
By Natasha Wein
When I was five, my mother raced me to the hospital in the middle of the night after a series of alarming GI symptoms that left me keeled over and blacking out on the bathroom floor. When I was eleven, I swung a Wiffle ball bat in physical education and subluxed six of my ribs; every time a chiropractor popped them back in, they’d pop right back out. On my competitive youth soccer team, I oscillated between playing as a central defender and sitting the bench in pain. I traveled out of state with my team when I could play and when I could not. My father—who loved having an elite athlete of a child—was tired of paying for medical appointments that didn’t “fix” me. In my adolescence, I passed out in the morning until my nutritionist increased my sodium intake to five grams per day. My mother was exhausted and frustrated by my regular and unresolving complaints of aches and pains. She was also worried, reflecting back panic in moments of physical unraveling.
Despite having lifelong pain that I thought was normal, unusual joint subluxations, and “mysterious” symptoms that confounded doctors in my youth, it wasn’t until 2019 that I was finally diagnosed with a rare connective tissue disorder called Ehlers Danlos Syndrome (EDS) and EDS-related comorbidities. By age 23, after a rapid decline in my health—lumbar and cervical disc herniations, radiating bilateral arm and leg pain and numbness, autonomic nervous system dysfunction, migraines, autoimmune illnesses, generalized allergic reactions, and severe fatigue—I was disabled.
Sometimes, when I talk about my disability, I am met with one of two isolating responses: the first is a series of questions to understand just how and why I got so sick that does not stop until the person has a satisfactory answer reassuring them that this type of decline won’t suddenly happen to them (i.e. that it’s genetic). The second protective reaction I sometimes encounter is the dismissing or minimizing of my pain and suffering (because if I’m just making a big fuss about something that doesn’t exist, then there’s no real threat to them). We tell each other and ourselves different limiting narratives about what it means to be disabled. For example, we hold differing beliefs about dynamic versus unchangeable disabilities and visible versus invisible disabilities. We hold certain beliefs about which disabilities should yield different levels of compassion, rights to quality care, and where “fault” lies. And we unknowingly perpetuate these beliefs in internal micro-moments and interpersonal exchanges that contribute to the othering of disabled people.
Our fear response in reaction to our own mortality and physical fragility causes us to distance ourselves from what we perceive as a threat. Disabled people get othered in an effort to preserve an illusion of protection from illness and disability and preserve a false sense of control in relation to the uncontrollable. To put it simply, there are only two differences between disabled and non-disabled people: chance and time.
The discrimination disabled people experience and the nuanced cultural perceptions of the present day are rooted in eugenics; eugenics is the scientifically erroneous and immoral set of principles and practices that aim to perfect human genetics by judging people with mental or physical disabilities as socially inferior and excluding those deemed as inferior while promoting those deemed as superior. Eugenic principles and practices date back as early as ancient Greece, but its contemporary history began in the late 19th century in the UK and spread to the United States, Canada, Australia, and other European countries. The most severe form of the eugenic movement was in Nazi Germany, but eugenic practices—including forced sterilization—were happening in the United States as late as the 1970s. Because value and intelligence were equated to being able-bodied or able-minded while worthlessness and stupidity were equated to being disabled, disabled lives have been devalued. And like racism, these historical situations set a foundation for present-day discrimination.
It is not easy for me to live with EDS and EDS-related comorbidities. There is the layer of suffering that comes from chronic pain and illness, but there is a second layer of suffering that comes from the barriers that exclude me from having the same opportunities as able-bodied people and the isolation therein. Having spent the vast majority of my life as an able-bodied competitive athlete, the adjustment has been stark and difficult to put into language because of the subtle nature of this exclusion; it is not uncommon for me to encounter something that I want to do professionally or personally but that requires me to be able-bodied in order to participate, and are things that I could do if accommodations were made. These barriers create obstacles for disabled people to join, learn, contribute, and access community, but the nature of this nuanced dynamic is also dehumanizing and, for me, has created intense feelings of shame and low self-regard that I have unknowingly accepted as my own.
After ankle surgery two years ago, I was in a wheelchair briefly. But because of my neck injury, I could not use my arms to push myself. I had people to help me, but when there was something I wanted to do (i.e. preparing a meal when I was hungry or retrieving something from the other side of the room) and I didn’t have available support, I started noticing punishing and self-blaming thoughts: I don’t deserve this because It’s my fault that I cannot do it myself. I felt shocked at the thoughts and internalized beliefs that I found myself holding, especially because these thoughts still inform my unconscious biases, even if I am not aware of them, don’t intellectually agree with them, or don’t yet understand the ways in which they are rooted in ableism.
As someone who is hyper-independent, it has been challenging for me to ask for the help that I need, accept help without feeling ashamed and embarrassed, and still believe in my own worth when I cannot do some of the things I used to be able to do. After ankle surgery, I’d sometimes hop around on my good leg trying to get things done on my own, until on two occasions I fell only a couple days post-op and my friends helped me understand how important it was for me to ask for and accept help; the feelings of being a burden were not shared by those around me. This is a familiar experience for me—overextending because of shame and self-blame and, as a result, further injuring myself or flaring up my autoimmune conditions.
I do not think that disability is inherently tragic. Over 60% of the American population needs some form of vision correction, like glasses. We do not think of everyone with a vision disorder as being disabled, but that’s also because we’ve invested in medical research and resources to support people with vision and eye disorders. As a result, we do not view those with correctable vision disorders as other. What I do find tragic are the ways in which we explicitly and implicitly reject, other, and dismiss disabled people. There is a way in which we pity and fear disabled people, which contributes to a sense of dividedness and a lack of understanding and empathy. People inherently cannot truly imagine what it would be like to lose health or function that they haven’t lost. And I also don’t think that it’s necessarily important for non-disabled people to be able to imagine being disabled. What I do think is important, is listening to the experiences of disabled people and reflecting on what we’ve internalized from our ableist history and present so that we can dismantle ableism, see disabled people for who they are, and create structures that allow disabled people to live their lives and experience what life has to offer.
Sometimes I feel this internal urgency as if there is something to overcome or prove. As if, with sheer force of will, I could cure and do away with my complex medical conditions. Some of this is because of my longing to be able to bike, run, and have endless energy again, but it’s also shame-driven because I am worried that I am worthless if I’m disabled. I am learning that there is nothing to overcome about my disability; I work hard for the health that I do have so that I can create a life with meaning and joy, but being disabled is a neutral descriptor of how my medical conditions affect me. I do, however, wish to overcome my shame and self-blaming reactions in relation to something I go through that is not within my control. I no longer want to wear this shame as if my disability makes me weak and less than.
This internal fight between ostracization and integration reflects the larger tensions in our culture. Even though my experiences with chronic illness and disability may not be universally relatable, some of the related emotional experiences and conflicts are grief, loss, alienation, longing, shame, and resilience. It’s been three years since I was diagnosed and in many ways, I still do not know how to live like this. Although there is no cure for EDS, there is something just as important to my physical and mental health as my laundry list of daily treatments: I have people in my life who support me by listening, believing me, advocating for me, normalizing the ways in which I have to take care of myself, and helping make the world more accessible to me and other disabled people by having complex conversations about disability and ableism. Listening, accessibility, and equity can allow both non-disabled and disabled people to have what we all wish for: places to learn, contribute, love, and be loved.