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Who is the 'damn cripple', the activist who puts disability on the agenda


Highlights: Flor Santillán is a communicator, writer and activist for the rights of people with disabilities. She has just published her first book, Maldita Lisiada (Chirimbote) "Crippled' is the term I use to name myself, my friends with disabilities, mainly in wheelchairs," the author told Clarín. The central deficit for that population, he said, has to do with access to work in terms of formality. "Sexuality is a giant taboo that people with disability are not subjects of law," he said.

Flor Santillán is a communicator and activist for the rights of people with disabilities. She has just published her first book, Maldita Lisiada (Chirimbote).

Flor Santillán is a communicator, writer and activist for the rights of people with disabilities. For all this and more she is known as the "damn cripple", a concept that gave name to her first book but also to her Instagram account, where more than 10 thousand people read daily what she has to say.

"'Crippled' is the term I use to name myself, my friends with disabilities, mainly in wheelchairs," the author told Clarín. Evoking the famous phrase of Soraya Montenegro, the dark character of the novel "María, la del barrio", starring Thalía, Flor opens the debate on the reality that the group of people with disabilities must face every day.

No special abilities, no disabled, no angels. When the activist says 'crippled' she knows that it hardly generates indifference. "It is not only strong but necessary, because when the other person listens to it it generates an interpellation, a discomfort. And it allows you to enable a conversation. It's disruptive, there's the idea that language is being built and deconstructed," he explained.

In Maldita Lisiada (Chirimbote) – co-authored with Santiago Solans – Santillán refers to a wheelchair that became not only his only means of circulating in life, but also a political pronouncement.

Flor Santillán stressed that people with disabilities face "a chain of violations" of rights every day. Photo courtesy Instagram @malditalisiadaok.

'A chain of violations'

One day in 2016, during a family barbecue, Flor began to feel unwell. He was 23 years old, the day before he had gone to a party and thought it was "hangover". Those symptoms that at first downplayed were exacerbated and it was not until almost three years later that they found a diagnosis: demyelinating polyneuropathy. Along the way, the author learned of hospitalizations, medical guards and the beginning of what she described as "a chain of violations."

Santillán manages an acid humor that constantly forces us to reflect. Thus, in those times when she went "from being bipedal to crippled", she discovered that for her "the wheelchair is not so serious, what is serious is that she cannot cross the street by some ramp". And with this, a series of rights violations.

Santillán mentioned the three least respected rights for the group of people with disabilities. The central deficit for that population, he said, has to do with access to work in terms of formality. On the other hand, he questioned, "disability pensions are incompatible with registered jobs."

Secondly, he pointed to "very everyday violations that have to do with architectural accessibility". "Public transport – whether buses, taxis, remises, subways or long-distance buses – is generally inaccessible to people with disabilities, especially those of us who use wheelchairs," he said.

When it comes to the day to day there is no possible metaphor, the failures are everywhere. "Walking the sidewalks in Argentina becomes an odyssey. I often drive down the street because the sidewalks do not have ramps that communicate. That leads me to a constant danger that is that I step on a car or a bus (regardless of being insulted and other things)."

Another example goes hand in hand with recreation: "It seems that leisure and enjoyment are not associated with us. Most of the authorized places (bars, restaurants, confectioneries and nightclubs) do not have the necessary accessibility, although there are regulations in force in this regard. "

Damn crippled (Chirimbote). Photo courtesy of Chirimbote.

The number three position in this peculiar ranking is occupied, he said, access to health, for multiple reasons that include costs, obstacles, bureaucracy, non-compliance with the law and infantilization.

"Did you come alone?" she was asked more than once in an office, as if she were not an adult, independent woman. "The medical world is very infantilizing, it seems that because you are in a wheelchair you are not a subject of rights." He added: "What happens with the health system is very violent, from the health model to access to benefits, both public and private."

Sexuality and disability: desiring and desired subjects

The sexuality of people with disabilities surfs between invisibility and infantilization. "Why doesn't anyone ask about accessibility in hotels?" said Santillán, mentioning only one case where this is more than clear.

"Sexuality is a giant taboo, it is installed that people with disabilities are not subjects and subjects of neither law nor desire. It seems that there is no possibility that we are desiring people or that they want us," he said.

According to the writer, "ignorance is absolute. There's a lot of theory about it, but nobody comes to ask us."

Ableism, bonds, absences and presences

In her story, Flor speaks as if she had lived two lives: the one before and the one after the disability. Between them he had to rethink, rebuild and learn about ableism.

What is this all about? According to the UN, "Ableism is often described as the belief system that gives rise to negative attitudes, stereotypes and stigma that devalue persons with disabilities based on their actual or subjective impairments. Ableism believes that people with disabilities deserve less respect and consideration, are less able to contribute and participate, and have an inherent value lower than others."

Flor Santillán: "With the absences I learned to value presence much more." Photo courtesy Instagram @malditalisiadaok.

The activist mentioned in this regard a phrase that is used a lot in the group with disabilities, which says that "disability is not what disables you, but in general it is the environment." Doctors, ties and families can contribute to this, he said, with a comprehensive view of the problem.

"They got it into our heads that you are a superhero who is on Everest, without an arm and without a leg, or you are the opposite, an extremely passive subject. So when they see you doing common things, people congratulate you," he said. The examples are overwhelming: there were strangers who hugged their friends for "taking her for a walk", people who shouted "idol" for going to a party and even some who cried when they saw her having fun.

"That attitudinal barrier is the one that costs the most, it leads us to have to be demonstrating everything continuously and it is exhausting to have to validate your identity or your existence because of your disability," he reflected.

From this follows another chapter in his life: what happened to the bonds he had established up to that point? When he recalls those days, when he believed himself "Roberto Carlos, with a million friends", he highlights the suffering caused by those who chose not to be there.

"Today I can make certain readings about the absences that at 23 I could not. There are people who end up moving away. In 2016, when I got sick, I would have responded with a lot of anger. But today, with another reality and a lot of therapy, I can understand that we have all been chipped that disability is a downturn, the worst thing that can happen to you in life, "he assumed.

"That fear that they have incorporated into all of us generates other fears and there are people who in the middle make the decision to step aside. Today I would tell you that I even celebrate it, I realized how important the people who decided to stay are, how important the family is, how vital my brothers, my mother, my father, my dog and my friends are. With the absences I learned to value presence much more. I am extremely privileged for the siblings and mother I have," she concluded.

See also

Flor Salort: 7 key moments for women's health, sex and emotions

End of Life Companions: How to Teach Preparing for Death and Grieving

Slave Grandmother Syndrome and Caregiver Stress

Source: clarin

All news articles on 2023-05-29

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