The weight of living in a world that doesn’t consider disabled people’s needs is piling on. Something has to change.
We live in a society that presumes disability is intrinsically tragic.
In reality, for me and many others, being disabled actually comes with many beautiful things, including a vibrant and loving community.
However, when the entire world is built without you in mind, the mental tax of living inflates beyond belief.
There are 1 billion disabled people worldwide, and 1 in 4 American adults live with a disability. Yet even in countries where access is a legal right, our needs are an afterthought.
In the U.K., nearly half of all people living in poverty are disabled, and they are 28.6 percent less likely to be employed than nondisabled people. In the early months of the COVID-19 pandemic, 6 in 10 COVID-19 deaths in the U.K. were disabled lives.
Globally, disabled people are disproportionately impacted by natural hazards due to inaccessible disaster relief.
It’s no wonder, then, that 32.9 percent of disabled adults in the United States reported experiencing frequent mental distress. And that was in 2018 — before being in the midst of a pandemic devaluing disabled lives.
Clearly, something needs to shift.
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The mental toll of disability
Kaley Roosen, PhD, CPsych, a clinical psychologist at the Toronto Psychology Clinic, says that disabled people’s lives can feel more chaotic because they need to rely on factors outside of their control, like transportation and housing, in order to function.
“Living a life where a person feels very little of a sense of control due to depending on so many outside, often unreliable sources can lead to mental health issues including depression, anxiety, addiction, and eating disorders,” she says.
For many disabled folks, mental health problems stem from outside influences, not from disability itself.
“I think my mental health conditions are rooted in my inability to slow down and to breathe for a second for fear of ableist repercussions,” says freelance journalist John Loeppky, who has cerebral palsy and generalized anxiety disorder.
For entrepreneur and diversity coach Sonya Barlow, living with chronic migraine means questioning her every move.
“It causes me to double-think what I do daily, who I am, and how I should be,” she says.
Inaccessibility weighs on us
Numerous factors contribute to the mental health challenges of the disabled community, but one of the most significant is global inaccessibility.
“The burden of navigating an inaccessible world takes up a large mental and emotional load,” says Roosen. “That hypervigilance can be compared to living in a war zone.”
Many disabled people are blocked from socializing because accessibility is not a priority in venues, which can lead to intense feelings of isolation.
“A lot of old pubs are not wheelchair accessible and when all my friends are going there, you do start to feel left out,” shares freelance journalist Faith Martin.
Although laws like the Americans with Disabilities Act (ADA) are designed to shield disabled people from discrimination, many are excluded by inaccessibility.
In 2017, the company 1800wheelchair surveyed Americans who identify as disabled, those they live with, and their caregivers. Of the 554 people surveyed, 20 percent said they or their loved one face an accessibility barrier every single day.
Being sidelined can be especially difficult when maintaining friendships. While nondisabled peers can make plans instantaneously, disabled people have to pre-plan every detail.
“It’s very hard to be different. I have to plan every night out point to point, otherwise I’ll be finished the day after because of fatigue, pain, and dislocations,” says student and freelance writer Niamh Ingram.
A lack of access also influences how disabled people are viewed by society. As they cannot leave the house regularly, they become invisible to nondisabled people.
“Society tends to not really think of disabled people or get to know them on a very human level,” explains Roosen. “As a result, when we finally do get out as disabled people, others start to infantilize us or demonize us.”
When our illness is unseen, we can feel invisible
Our preconceived notions of disability also factor into the mental health impact on disabled people.
Many people only accommodate disability if it’s clearly visible, so when someone doesn’t meet this expectation of disability, they’re dismissed.
“Being constantly told you’re too young, you look fine, you don’t look sick… it’s really damaging,” says Ingram, who has Ehlers-Danlos Syndrome, long-haul COVID-19, and obsessive compulsive disorder. “It promotes self-doubt, which is a dangerous thing for those of us with disabilities.”
Our quality of life is below average
A lower quality of life is another major contributor to poor mental health in disabled people.
In 2019, 25.9 percent of disabled American adults were living in poverty, compared with just 11.4 percent of nondisabled people, according to the 2020 Annual Report on People with Disabilities in America.
“You can’t keep the majority of a community below the poverty line in a framework informed by eugenicists, and then expect disabled people to feel entirely human and worthy of care,” says Loeppky.
Disabled people also contend with meeting a capitalist society’s requirements for productivity. When unable to meet them, it places additional pressure on mental health.
“For those with mental health conditions, our needs are met only to the point where we are ‘fixed’ enough to meet society’s needs,” says Evie Muir, a domestic abuse specialist who has borderline personality disorder, complex post-traumatic stress disorder, anxiety disorder, depression, and premenstrual exacerbation.
Broadly, the continued neglect and misunderstanding of disabled people’s needs has the most significant impact on mental health.
“Life is enervating for disabled people, and I think a lot of nondisabled people do not recognize this,” says disability activist and law graduate Ginny Butcher, who has muscular dystrophy.
The pandemic has disproportionally harmed us
The impact of disabled exclusion has become increasingly toxic during the COVID-19 pandemic.
“At the moment, a lot of marginalized people could be at risk of being overlooked simply because we’re all in fight-or-flight adrenaline mode,” says Marianne Trent, DClinPsy, clinical psychologist and author.
Shockingly, in a pandemic decimating the disabled community, authorities have sidelined disabled lives. Even the British government has consistently neglected to make their announcements accessible for deaf people, per the advocacy group Disability Rights UK.
“We have been classed as ‘acceptable losses’ and left to die in care homes, we have had DNR notices forced upon us, and we have had our care packages reduced and our rights removed,” says Butcher. “How could this treatment not have a significant impact on my mental health?”
Marginalized groups bear a larger burden
For people in the disabled community who are also part of other marginalized groups, the mental tax inflates exponentially.
In the U.K., under the Mental Health Act, Black people are four times as likely to be detained in a hospital and treated against their wishes. Transgender people consistently have their experiences politicized.
“We frequently experience a collective burnout that must be overcome in order to continue fighting for our rights,” says Muir. “For those of us who have multiple identifiers, this will be compounded by the ways we navigate both ableism, racism, misogyny, homophobia, and transphobia.”
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What needs to change
To prevent the mental tax of disability inflating further, society has to make significant changes.
Accessibility accommodations must be prioritized to stop isolating the disabled community and ensure that disabled people have equal access to employment opportunities.
Disabled people need communities to gain support from those who can genuinely empathize with their experiences.
Specialized mental healthcare has to be implemented to meet the needs of disabled lives.
“Mental health isn’t one-size-fits-all and I think we need to start recognizing that,” says Martin.
Though disabled people are the ones paying the inflating mental tax on living disabled, nondisabled people will need to step up. To make long-lasting change, we need educated allies.
“The best thing society can do is acknowledge that ableism exists and start to imagine our society with disabled bodies and minds in it,” says Roosen. “We are part of society and deserve to be integrated into it.”
While the near-constant mental toll placed on disabled people is exhausting, the pandemic has given us an opportunity for change.
We’re all braced for a system reset anyway.
“We can’t return to ‘normal,” says Loeppky. “We have to return to ‘different.’”
Article originally appeared on May 3, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on May 3, 2021.
About the author
Hannah Shewan Stevens
Hannah Shewan Stevens is a freelance journalist, speaker, press officer, and newly qualified sex educator. She typically writes about health, disability, sex, and relationships. After working for press agencies and producing digital video content, she’s now focused on feature writing and on best practices for reporting on disability. Follow her on Twitter.
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The Mental Toll of Disability Is Inflating — We Have to Do Something (bezzyms.com)
