This Body That Escapes
Several years ago, I lost part of my physical autonomy. Yet no one can see it. This sensation of invisible disability brought out an additional pain: invisible disability.
An invisible disability appears as a diminishment that is undetectable to others and the perception of a certain pain that settles within us. Even though disabilities vary, the sensations remain similar. They can include pain, intense fatigue, a sense of being out of step, discrimination, or the feeling of not being understood.
And I wonder, how can I convey the sensation of invisible disability in images and words?
I meet five people with different disabilities that we can’t see, and they reveal their intimate feelings to me. Nuances on their bodies reflect the emotions they experience, the physical or psychological pain, and above all, an increased vulnerability. The text always asks them the same question: What makes you feel like you’re not able-bodied?
MARINA
I have ASD: Autism Spectrum Disorder.
I don’t feel able-bodied on public transportation, during sports, at work, or when I have a meltdown.
Breaking down makes me feel disabled because it tires me out enormously; I sometimes hurt myself if I don’t have a pillow under my head. It’s hard to show myself in that light. It often happens in a relatively safe environment: in people’s homes, at my psychiatrist’s, or in my studio.
RENATO
In my family history, the disability hides.
With my deaf mother and sister, it was more like “shut up and smile.” However, with a hearing aid, I succeeded at work with a constant, almost superhuman effort to understand everything all the time. It’s so tiring that I no longer have the energy for my life outside of work, which I avoid.
I feel disabled when I can’t understand jokes because they go too fast. I have trouble having a conversation in a noisy restaurant, it’s impossible in a nightclub, and I’m deprived of it in a sauna, in the shower, at the sea, at night in bed…
KENTIN
I have complex post-traumatic stress disorder.
I feel disabled when I’m forced to be on sick leave regularly because the workplace isn’t adapted to the way I function with my mental health issues.
This prevents me from doing the job I want to do.
I feel disabled when my disability takes over in other people’s eyes.
SIDONIE
That, in a nutshell, is the invisible side of Ehlers Danlos syndrome.
Everyone experiences their invisible disability in a unique way, but I would say it’s accentuated in moments of great fatigue, almost overwhelming pain, and loss of control over my body.
This body, which doesn’t listen to me, which no longer listens to me. This constant pain in my back, ankles, and wrists, the repeated subluxations (incomplete dislocations), the piercing stomach aches that make it hard to live…
YASSIN
I’ve been HIV-positive for almost 10 years, and the first few years were particularly difficult. Since I couldn’t accept my identity and couldn’t accept the news, I didn’t know how to respond when people made me feel different.
All the symptoms related to this infection are emotional rather than medical. I took a pill every day, and my health was perfectly balanced and under control. This is common for many people living with HIV.
MELODY
I have borderline personality disorder associated with trauma.
I’m also anxious and have depressive episodes. I have obsessive-compulsive disorder.
And attention problems.
I’ve felt disabled my entire life. But I don’t feel completely concerned by the term “disabled.” I mainly feel alone, misunderstood.
I tell myself that no one can understand what’s going on in my head, but on a daily basis, I manage to play and make myself capable of being in any sphere.
LORINE
In 2020, I was diagnosed with endometriosis. And that brought me relief. I perceive this disability in my body, not in the eyes of others.
Every food I eat makes me wonder: Will I regret it? Will there be consequences? How long will my stomach hurt?
All these questions make me feel different, remind me that I have a disability, or simply make me regret what I ate.
