2024-03-01 14:42:12
“Disability doesn’t necessarily mean being in a wheelchair.” Although around 80% of disabilities are invisible, they are still largely unknown and misunderstood.
Tired man © Unsplash
In Belgium, 9% of the adult population has a disability, or around 660,000 people. Among them, around 80% have an invisible disability. An overwhelming majority, but the reality of which is still largely unknown. Two years ago, Alice Dèves and Anaëlle Marzelière launched the media Petite Mu to raise awareness of this issue. Through comics, video capsules, posts on social networks, they combine testimonies and information to educate on the too many preconceptions that weigh on disability.
Disability and its many facets
“Little Mu was born two years ago”says Anaëlle, “Alice was diagnosed in 2021 with multiple sclerosis, an autoimmune disease. When she wanted to find out more, she did not recognize herself at all in the various online resources. The information was either scientific or only aimed at elderly people .” Together, they decide to create a media that speaks to everyone: “We wanted to show that although we talk very little about them, invisible disabilities are very present, to remind people that being disabled does not necessarily mean being in a wheelchair.”
Invisible disability is defined by its literal meaning: it cannot be seen. A tenuous border, believes Anaëlle: “Multiple sclerosis is invisible, but during an outbreak of symptoms, it is possible that the person moves with a cane for example and therefore that we see it, but many diseases are not visible at first glance, or at all.” A deaf person will not necessarily wear a device that allows them to be identified, an amputee may have their prosthesis hidden by their pants, a depressed person may hide their sadness or fatigue… Invisible disability covers both chronic and auto illnesses. immune disorders such as endometriosis or diabetes, as well as inflammatory diseases, psychological and psychiatric disorders, post-traumatic disorders, visual and hearing disorders and neurodevelopmental disorders, such as autism and dys.
Suffice to say that this concerns many people: “Since covid, depressive and anxious states have exploded, at the same time, cancers affect a lot of people, and these are just two examples. We are all affected in one way or another by disability.”
Handicap invisible et discriminations
Beyond the symptoms which can be particularly difficult to live with on a daily basis, people with an invisible disability also suffer from the general ignorance of the population. In a system that makes able-bodied people the social norm, this ignorance leads to its share of discrimination which negatively impacts the daily lives of the people concerned: “There is a popular belief that pain is supposed to be seen”explains Anaëlle, “In the testimonies collected, we have many people who told us particularly violent stories when they simply wanted to exercise their rights.”
Parking in a disabled space or sitting in a priority space would sometimes be very unwelcome when you don’t “look sick” explains the co-founder of Petite Mu: “Some people are insulted, they are accused of lying, when the person is young it is even worse. There is a questioning of disability. A woman with cancer told us that when she was weakened by chemotherapy, she was verbally attacked when she wanted to go to priority checkout. She had to take off her scarf and invite the person to “take their cancer”. Obviously it created a lot of unease in the crowd, but that should never happen. Especially since some people do not even have the possibility of “proving” their illness.”
However, discrimination is not always born from hostility, sometimes hell is paved with good intentions: “Sometimes we want to be kind, when in fact we are clumsy: pity and infantilization are also validism. Making decisions in the other’s place while thinking we are doing the right thing because we do not If you don’t think you’re capable, or you don’t want to tire him out, that’s not the right thing to do.”
Towards a better understanding of disability
Faced with the fear of having to expose their state of health under duress, the fear of not being recognized or the fear of being stigmatized, some choose not to say, even if it means making their symptoms worse: “There are plenty of people who don’t use their card to avoid having to deal with unpleasant interactions. At work, being recognized as disabled allows them to have access to accommodations. However, some people prefer not to use them. ask, for fear of exposing themselves to discrimination, but as a result they don’t benefit from it and it affects their daily lives.”
As part of their work, the two founders of Petite Mu also travel to companies to raise awareness of the issue of invisible disabilities and advise on the right actions to adopt. For them, there is still a long way to go as the issue has long been neglected. Schools have a role to play in educating, but the symbolism must also change: “There are associations working to change the pictogram of people with disabilities, to finally stop limiting disability to wheelchairs.”
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