Disability Pride: Unlearning Shame and Reclaiming Pleasure
Written by Charlie Fitz
Illustration by Maartje Aletta Reggin
***Trigger warning: this piece discusses surgery and medical interventions which may be triggering for someone with hospital related trauma. It also alludes to sexual violence.***
I have always carried shame in my body like a vital organ; growing with me, living in and as part of me. Now as a self-identifying proud disabled woman, I put daily care into unlearning my shame - this identity, proclamation and embodiment supports my journey to reclaiming pleasure.
Shame
As a young girl I struggled to go to the toilet at other people’s houses or in a public facility and I had to be at least 2 rooms away from anyone else to use a toilet in my own house. The idea of someone hearing me filled me with deep palpable shame. As a preteen I started experiencing catcalls, uncomfortable attention and street harassment. I always walked with my eyes to the floor, neck bent downwards and as a teenager I was ashamed to be seen without a bra or makeup on, or with visible body hair. I struggled to eat in public and if I had to eat in front of someone else, I covered my mouth with a hand whilst I ate. As a young adult I struggled to acknowledge my own sexual desire, I faked pleasure and rarely asked for what I wanted, I even policed my own thoughts.
These are just some of the interconnected ways my shame has manifested. I have felt shame about my body, it’s functions and the space I take up. I have felt shame about the things other people have done to me, about my needs, desires and ultimately about never feeling worthy of love, care and respect. In part, my shame is the result of internalised misogyny but I also think the shame I have felt is related to human vulnerability. The situations described above are flashes of my own human vulnerability and need for care. Understanding this, admitting to this and trying to reject this shame is an ongoing process.
What changed?
I have Classical Ehlers-Danlos Syndrome, a genetic connective tissue disorder which causes the connective tissues throughout my body – organs, skin, bones, veins, muscles, tendons, ligaments, eyes and so on - to be faulty. It usually presents as body wide, seemingly unconnected dysfunctions, complications and symptoms, that are often incorrectly attributed by clinicians to anxiety or even malingering; which can go on for years if not decades before a correct diagnosis.
When overt symptoms of this condition began to manifest in my early twenties the shame, I already carried intensified. I was thrown into patient-hood by blood clots in my lung and heart dysfunction. Being seen topless in front of doctors, nurses, family members and paramedics as ECG stickers were attached to my chest became a common occurrence. Gastrointestinal and gynaecological dysfunction followed, accompanied by frequent rectal and vaginal examinations. In the years proceeding different parts of my body began to fail or fall apart and I had to get comfortable with the often-callous inspection of my body, my personal history and my habits; I was under both a metaphorical and sometimes literal microscope.
Since 2014 I have had upwards of 30 scans of various parts of my body. I have had MRI’s of my brain, spine, torso, jaw, pelvis, and bowels. I have been awake whilst surgeons have guided camera’s down my throat and subsequently up my rectum and through my intestines. I have had internal ultrasounds of my reproductive organs. I have had to sit on a commode and pass stool in front of 3 clinicians whilst being x-rayed to measure the extent of 3 separate organ prolapses. I have had a surgery removing Endometriosis from my pelvic organs. And another surgery in which a group of neurosurgeons rebuilt the crumbling structure of my upper spine whilst the skin of my neck was splayed open under surgical lights. I have been touched, I have been altered and I have been seen.
Although becoming a patient brought with it new experiences of shame and an internalised ableism I work against daily, I could also no longer deny my human frailty, precarity and need for care. My body and its functions could not be denied, I required people to see and know my body, to understand my bodily functions and to give me care for survival. As a disabled person I also suddenly felt invisible in society. When I began using mobility aids, I no longer had to lower my eye line in public to avoid unwanted attention as heads turned away from me. Rather than trying to make myself smaller and quiet I had to become louder and more direct to advocate for myself and my safety in public spaces. I would ask people to not park in front of ramps, to not load the wheelchair space of a train with suitcases, to not grab or attempt to lift me and my wheelchair onto trains without consent or warning. Rather than hiding my human vulnerability, need for care and desires I had to begin strongly advocating for them.
Reclaiming pleasure
The social model for disability views societies lack of access as the thing that disables a person rather than the persons impairment. This model isn’t perfect yet it has helped me to not just know, but also believe that I am not the problem. My body, it’s functions, even its dysfunctions are not shameful, a culture that perpetuates those feelings of shame is. We do not need to change our bodies; we need to change our culture.
The processes of claiming pride in my identity as a disabled person and reclaiming pleasure have had a symbiotic relationship. As a sick and disabled person, I have encountered many barriers to sexual pleasure; pain, fatigue, fear of injury, lack of privacy because of a reliance on family and feeling as though I was no longer attractive because of my illness. I have, like many in the disabled communities, experienced the infantilising assumption that because we are disabled, we do not have sexual desire. Well, I, and many of us do have sexual desire, just as many non disabled people do. Reclaiming and making space for my desire has become more important to me since becoming disabled. In part, this is because it has become a radical act to simply talk openly about sex as a disabled person but more importantly with a life where daily pain is guaranteed how can I deny myself the relief of pleasure?
This is an ongoing process, however, being apart of communities like the one XES Products is creating with this blog, where sick and disabled people come together to celebrate and discuss our pleasure, is a vital part of this.
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Charlie Fitz is a sick and disabled artist, writer and Wellcome Trust funded Medical Humanities Postgraduate. Her multiform projects explore experiences of illness and trauma; challenging medical paternalism, medical gaslighting and ableism. Explore her work and publications at www.sickofbeingpatient.com or follow her on Twitter and Instagram at @CharlieJLFitz
Maartje Reggin (@littlemaart) is a disabled designer and activist from The Netherlands who loves doing research and making everyone feel included. She is a friend to all animals (especially her two house bunnies and her cat) and can’t live without tea.
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