A powerful photography and storytelling project titled "This Body That Escapes" explores the deeply personal experiences of individuals living with invisible disabilities. Created by photographer Hélène Mastrandréas, who herself lost part of her physical autonomy several years ago, the project aims to give voice and visual representation to conditions that cannot be seen by others but profoundly impact daily life.
The concept emerged from Mastrandréas' own experience with invisible disability, which she describes as "a diminishment that is undetectable to others and the perception of a certain pain that settles within us." Despite the variety of conditions, she notes that common sensations include pain, intense fatigue, feeling out of step with society, facing discrimination, and experiencing a lack of understanding from others. Through intimate portraits and personal testimonies, the project captures the nuanced emotions, physical and psychological pain, and increased vulnerability that characterize these hidden conditions.
Seven individuals shared their stories for the project, each responding to the same fundamental question: "What makes you feel like you're not able-bodied?" Marina, who lives with Autism Spectrum Disorder (ASD), explained how she struggles on public transportation, during sports activities, at work, and particularly during meltdowns. "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," she shared, noting that these episodes often occur in relatively safe environments like people's homes, her psychiatrist's office, or her studio.
Renato's experience with hearing loss reflects a family history where "disability hides," describing a household approach of "shut up and smile" with his deaf mother and sister. Despite using a hearing aid and succeeding at work, he maintains this success through "constant, almost superhuman effort to understand everything all the time." This exhausting process leaves him without energy for life outside work, and he feels most disabled when unable to understand fast-moving jokes, struggling with conversations in noisy restaurants, finding nightclubs impossible, and being deprived of communication in saunas, showers, at sea, or at night in bed.
Kentin, who lives with complex post-traumatic stress disorder, experiences disability most acutely when forced to take regular sick leave because workplaces aren't adapted to accommodate his mental health needs. This prevents him from pursuing the career he desires, and he feels particularly disabled "when my disability takes over in other people's eyes." Sidonie's Ehlers-Danlos syndrome represents what she calls "the invisible side" of chronic illness, characterized by moments of overwhelming fatigue, intense pain, and loss of bodily control. She describes "this body, which doesn't listen to me, which no longer listens to me," along with constant pain in her back, ankles, and wrists, repeated subluxations (incomplete dislocations), and piercing stomach aches that make daily life challenging.
Yassin has been HIV-positive for almost ten years, with the first few years proving particularly difficult. He explains that his inability to accept his identity and diagnosis left him unable to respond when others made him feel different. "All the symptoms related to this infection are emotional rather than medical," he notes, explaining that while he takes a daily pill and maintains perfectly balanced health, the psychological impact remains significant—a common experience for many people living with HIV.
Melody's experience encompasses multiple conditions: borderline personality disorder associated with trauma, anxiety, depressive episodes, obsessive-compulsive disorder, and attention problems. While she has "felt disabled my entire life," she doesn't feel completely aligned with the term "disabled," instead describing feeling "alone, misunderstood." She believes no one can understand what's happening in her mind, yet she manages to "play and make myself capable of being in any sphere" on a daily basis.
Lorine received her endometriosis diagnosis in 2020, which brought her relief through understanding. Unlike others, she perceives her disability through her own body rather than through others' perceptions. Every meal becomes a source of anxiety: "Will I regret it? Will there be consequences? How long will my stomach hurt?" These constant questions serve as daily reminders of her condition and create a sense of difference from others without similar health concerns.
The project represents a significant contribution to disability awareness and representation, using visual storytelling to bridge the gap between invisible experiences and public understanding. By combining intimate photography with personal narratives, Mastrandréas creates a powerful testament to the resilience and complexity of individuals living with conditions that society often overlooks or misunderstands.
