Disability experts say it’s common for doctors to misunderstand bodily autonomy, which can impact a person’s mental health.
CDC data shows about 26% of Americans live with a disability, whether it’s physical or mental.
Conditions like anxiety, spinal injury, ADHD, amputation, depression, cerebral palsy — these are just some examples.
Advocates say there’s a lot of misunderstanding about a person who has a disability. And that stigma not only runs deep — it can also have a huge impact on that individual’s mental health.
Twenty-eight-year-old New Yorker Chloé Valentine Toscano knows beauty, from walking in fashion week to her Instagram reels to publishing in magazines like Allure.
“I’m a writer. I’m someone who likes the color pink. I like butterflies. I like learning a lot about anyone and anything,” she said. “I think we all have differences, and I want to understand differences. … For me, beauty is just being open-minded,” she said.
She also has fought face-to-face with ugly mental health struggles caused by doctors who didn’t understand disability.
“It is a journey,” Valentine Toscano said.
She lost motor function from her elbow down in 2014. She adapted and spent years living with — as she calls it — dead weight. She got into paralypmic swimming and started her career.
Then, after years of researching and soul searching, she chose to amputate her arm.
“I know amputation can be very traumatic because some people, a lot of people,will experience it through trauma,” she said. “But that wasn’t where I was in my case. So, it wasn’t traumatic talking about it, but it was traumatic playing a game with the yeses and the nos.”
Valentine Toscano spent three years fighting to get her procedure. She says some surgeons told her any elective amputation was too risky, even though she was healthy. Other rejections came after her surgery had been approved and scheduled.
“The answer I got from one, he said, ‘Well, some people just need to learn to live with what they’ve got.’ That made me feel like someone else who wasn’t in my body was telling me what was better for me,” she said. “It felt very frustrating to have it 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 misunderstanding that is common, and can cause undue stress as well as impact a person’s mental well-being.
In Valentine Toscano’s story, it happened a few times.
She recounted that in one appointment: “I cried, I broke down and I felt like the minute I expressed that emotion, he sent me in for a psych evaluation, which felt like I was being punished for expressing emotion.” And then she described the examination, saying: “She was asking me, she said, ‘Do you find that you’re unattractive because of your arm and that you would be more attractive without it?’ And I was like, ‘It’s not about that at all. It’s never been about that.’ … I felt angry and belittled and just, not heard, 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 how it relates to health care.
“If you haven’t been exposed to it personally — you have not been exposed to it through being a family friend, a lover, whoever that might be — And you’re not called to do it professionally and you don’t see it around you, you don’t think about it.”
She says, unfortunately, Valentine Toscano’s experience is all too common. Mental health experts with lived experience or expertise in disability are rare.
“It can be quite challenging to find somebody,” Mona said. “The other thing to think about is the steps that come before that, which is that it’s very hard for people to access education if they have disability, let alone graduate school. And internship and fellowship…”
Sixty-one million U.S. adults, which is about one in 4, have some type of disability, according to the CDC.
A 2021 anonymous survey of graduating medical students showed 7.6% identified as having a disability. But data collected directly from medical schools show that only about 4% of medical students disclosed their disability.
That stigma against disability —physical or mental — runs deep.
From 1867 to 1974 U.S. cities had laws governing who could be in public. Codes included fining or jailing those deemed “diseased, maimed, mutilated, or anyway deformed.”
Mona says it’s federal bias favoring able-bodied people.
“You’re best at home. You’re best tucked away. Or, you’re best institutionalized out of the way of anybody else who is displeased with the way that you look,” she said.
She adds structural stigmas fueled misconceptions about disabled people’s decision-making about their own bodies.
NEWSY’S LINDSEY THEIS: When we talk about bodily autonomy, what type of impact cannot have long term on someone’s mental well-being?
LINDA MONA: Trying to bring that in and make your choices can have a huge effect on your mental health in the long run. … It also happens a lot with pregnancy and people with disabilities. Right? So, you know, somebody has some kind of cognitive mental difference or physical difference. There’s, you know, constant questioning about, you know, ‘you want to be pregnant? You know what that’s going to do to your body?’ … I don’t think anybody thinks those types of decisions are a simple decision. They’re complex. But you have to trust that somebody has made that made that decision with that context in mind and not assume that they’re uninformed.
In summer 2021, Valentine Toscano had her amputation surgery. She calls it a dream come true.
“I just felt happy,” she said. “I was like, ‘Oh my gosh.’ I got this is like a huge step in my life. It just felt like one of those, like, huge dreams. I got there. I got a huge part of my personality back immediately.”
Valentine Toscano uses a prosthetic, as needed. It’s bright pink and purple with a lot of glitter.
“If I could have decided to have been born with an arm with butterflies and sparkles on it, like right out of the womb, I would have picked that,” she said.
Valentine Toscano said her prosthetic cost $13,000.
“It’s something that’s very expensive,” she said. “I was fortunate to have it covered by health insurance. But that’s not something everyone has.”
Valentine Toscano continues to advocate and write, sharing her experience now from two different sides of disability. She’s also writing a book on the side.
She says the ability to share those stories in her voice and having others listen is not only good for her well-being, it’s truly beautiful.