How Disability Misunderstandings and Stigma Impact Mental Wellbeing

How Disability Misunderstandings and Stigma Impact Mental Wellbeing

About 26% of Americans live with a disability, either physical or mental, according to the Centers for Disease Control.

Advocates say there are a lot of misunderstandings about someone with a disability. And that stigma not only runs deep, but it can also have a huge impact on that person’s mental health.

28-year-old New Yorker Chloé Valentine Toscano knows beauty, from walking in fashion week to her Instagram reels to posting in magazines like Allure.

“I’m a writer. I’m someone who likes the color pink. I like butterflies. I like to learn a lot about anyone and anything,” she said. “I think we all have differences, and I want to understand the differences.”

She also battled face to face with nasty mental health struggles caused by doctors who did not understand her disability.

“It’s a journey,” said Valentine Toscano.

She lost downward elbow motor function in 2014. She adapted and spent years living with – as she calls it – dead weight. She got into Paralympic swimming and started her career.

Then, after years of research and introspection, she chose to amputate her arm.

“I know amputation can be very traumatic because some people, many people, will experience it through trauma,” she said. “But it wasn’t where I was in my case. So it wasn’t traumatic to talk about it, but it was traumatic to play a game of yeses and noes.”

Valentine Toscano spent three years fighting to get her intervention. She says some surgeons told her any elective amputation was too risky, even if she was healthy. Further rejections came after her surgery was approved and scheduled.

“The response I got from one of them, he said, ‘Well, some people just need to learn to live with what they have. It made me feel like someone else who wasn’t in my body was telling me what was best for me,” she said. “It was very frustrating to have him and very offensive to have someone say that.”

Bodily autonomy – or the right to control what happens to your body – is a common struggle in the disability community. And disability experts say misunderstandings are common and can cause undue stress as well as impact a person’s mental well-being.

The case of Valentine Toscano has happened several times.

She said that on one date, “I cried, broke down and felt like the minute I expressed that emotion, he sent me for an evaluation. psychological, which made me feel like I was being punished for expressing an emotion.” And then she described the exam, saying, “She was asking me, she was like, ‘Do you think you’re unattractive because of your arm and would you be more attractive without it?’ And I was like, ‘It’s not about that at all. It was never about that.’ … I felt angry and belittled and just, unheard, because I was asking for one thing and being evaluated for something that wasn’t even remotely there.”

Clinical psychologist Dr. Linda Mona has spent the past two decades working on disability and its connection to health care.

“If you haven’t been exposed to it personally – you haven’t been exposed to it as a family friend, lover, whoever – and you’re not called upon to do so professionally and you’re not don’t see it around you, you don’t think about it.”

She says, sadly, that Valentine Toscano’s experience is all too common. Mental health experts with lived experience or expertise in disability are rare.

“Finding someone can be quite difficult,” Mona said. “The other thing to think about is the steps that precede it, that is, it’s very difficult for people to access education if they have a disability, not to mention higher education. And internships and scholarships…”

A 2021 anonymous survey of graduating medical students showed that 7.6% identified themselves as having a disability. But data collected directly from medical schools shows that only about 4% of medical students have disclosed their disability.

This stigma against disability – physical or mental – runs deep.

From 1867 to 1974, American cities had laws governing who could be in public. The codes provided for the imposition of a fine or imprisonment on those found to be “sick, maimed, maimed, or deformed in any way”.

Mona says it’s a federal bias favoring able-bodied people.

“You’re better at home. You’re better hidden. Or, you’re better institutionalized away from anyone who’s unhappy with your appearance,” she said.

She adds that structural stigma fuels misconceptions about how people with disabilities make decisions about their own bodies.

NEWSY’S LINDSEY THEIS: When it comes to bodily autonomy, what kind of impact can’t have on a person’s mental well-being in the long term?

MONA CUTE: Trying to integrate this and make your choices can have a huge effect on your long-term mental health. … It also happens a lot with pregnancy and people with disabilities. Right? So, you know, someone has some sort of cognitive mental difference or physical difference. There are, you know, constant questions about, you know, ‘do you want to get pregnant? Do you know what this will do to your body? … I don’t think anyone thinks these types of decisions are a simple decision. They are complex. But you have to trust that someone made that decision with that context in mind and not assume that they are uninformed.

In the summer of 2021, Valentine Toscano underwent amputation surgery. She calls it a dream come true.

“I just felt happy,” she said. “I was like, ‘Oh my God.’ I realized that was like a huge milestone in my life. It was just like one of those huge dreams. I got there. I got a lot of my personality back immediately.”

Toscano uses a prosthesis, if necessary. It is hot pink and purple with lots of glitter.

“If I could have decided to be born with an arm with butterflies and sparkles on it, like right out of the womb, I would have chosen that,” she said.

Toscano said his prosthesis cost $13,000.

“It’s something very expensive,” she said. “I was lucky to have it covered by health insurance. But it’s not something everyone has.”

Toscano continues to advocate and write, now sharing his experience from two different sides of disability. She is also writing a book on the side.

She says the ability to share these stories with her voice and have others listen is not only good for her well-being, it’s truly beautiful.

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