This week marks the 30th anniversary of ADA, Americans with Disabilities Act. Many things have been accomplished in those 30 years but we could do so much better. Let’s first talk about the ADA.
The ADA prohibits discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications. An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered. The ADA also requires employers to make reasonable accommodations for employees or candidates with disabilities.
So, how does one know if they are ‘legally’ classified as disabled or of having a disability? Disability is not always visible. I, for example, suffer from multiple chronic invisible disorders. Here are the requirements by Social Security;
- If you are currently working and are earning more than $1,260 a month you generally cannot be considered disabled. If you are not working – an application must be submitted to the Disability Determination Services (DDS) office that will make the decision about your medical condition.
- Your condition must significantly limit your ability to do basic work such as lifting, standing, walking, sitting, and remembering – for at least 12 months. If it does not, they will find that you are not disabled.
- For each of the major body systems, they maintain a list of medical conditions that are considered so severe that it prevents a person from completing a substantial gainful activity. If your condition is not on the list, they have to decide if it is as severe as a medical condition that is on the list. If it is, they will find that you are disabled.
- At this step, they decide if your medical impairment(s) prevents you from performing any of your past work. It is doesn’t, they will decide you don’t have a qualifying disability
- If you can’t do the work you did in the past, they look to see if there is other work you could do despite your impairment(s). They consider your medical conditions and your age, education, past work experience, and any transferable skills you may have. If you can’t do other work, they’ll decide you are disabled. If you can do other work, they’ll decide that you don’t have a qualifying disability and your claim will be denied.
As a personal note here: I do understand why the process of being deemed as disabled is structured and comprehensive, however, it can be nearly impossible to be classified as having a disability even if you have a chronic, debilitating disorder. Trust me, I know many people who have lost jobs and/or have financial crises from lack of employment and the ability to work a full-time job with or without assistance.
Celebrating the past 30 years is fine, but I think it should be more of a pause to analyze how the system has failed and/or could be improved. It should be a motivator for progress. Here are some of the issues when it comes to healthcare and accessibility for the disabled in the United States.
- The disparity in Healthcare:
- 1 in 4 Americans lives with a disability.
- 3 in 10 indigenous people have a disability
- 1 in 4 Black people has a disability.
- 1 in 5 white people has a disability.
- 1 in 6 Native Hawaiian/ Pacific Islander people has a disability.
- 1 in 6 Latninx people has a disability.
- 1 in 10 Asian people has a disability.
As with everything, intersectionality exists…and it may not be more evident than it is in the healthcare circuit and with disability. It should come as no surprise that living with a disability is costly. For BIPOC communities this is made even more difficult as access to education and employment, along with the lack of equality in both sectors, are limited.
– “While disability and poverty have an interactive effect, our social service system treats them separately. For example, disability benefits (including health coverage) are often hinged on proving one is incapable of work, but anti-poverty programs often have a work requirement.” – Jennifer Pokempner & Dorothy E. Roberts/ / Penn Law
- Adults with disabilities tend to have lower levels of education than those without a disability.
- More than one in five adults with disabilities have less than a high school education (21 percent) compared to 11 percent of adults with no disability.
- Only 13 percent have a bachelor’s degree or more compared to 31 percent of adults with no disability.
Access to education is vital for self-confidence, employment opportunities, college scholarships and grants, and narrowing the racial wealth gap.
- The unemployment rate of people with disabilities is twice as high as those without – and the rates for BIPOC/Women are even higher.
U.S. senator, Tom Harkin, said in a keynote speech, “We’ve barely moved the needle,” he said. “The unemployment rate for adults with disabilities today is about the same as it was 30 years ago.”
- Accessibility & Healthcare:
- 1 in 3 adults with a disability has an unmet healthcare need because of cost.
- People with disabilities are twice as likely to not be able to pay their medical bills due to co-pays, out-of-pocket expenses, out-of-network expenses, deductibles, and uncovered care, treatment, and medication.
Remember, people with disabilities use more public health services than those without. Average expenditures for health care among those with disabilities are 5 to 6 times higher, and they spend much more out-of-pocket.
- Access problems still exist even when insured.
Problems observed among those with disabilities are”…difficulty obtaining a usual source of care8 or accessing basic needed medical care in a timely fashion9 to lower rates of cancer screenings and treatment,10–12 as well as widespread difficulty in obtaining specialty services like rehabilitation,13 medical equipment,14,15 or home care.16 Consequently, affordable and comprehensive health insurance is a policy priority for this population.”
Healthcare insurance is a vast, dense, hellscape. Due to low employment opportunities, health insurance options through employers is limited or non-existent. Private insurance is expensive, and if the Trump and GOP administration cut or diminish the Affordable Healthcare Act (ACA), access to private insurance will become a mute option for those with disabilities as the private insurance companies can deny coverage to those with pre-existing conditions and annual limits (again, people with disabilities are likely to use healthcare services more frequently and an annual limit can be an immense issue).
- There is only about 10% of disabled characters on television.
- GLAAD reported in 2019 of only one disabled LGBTQIA+ character in all major releases of that year. That film was Five Feet Apart.
- They also reported in 2019 that only 3.1% of characters on television had disabilities. That is only 27 characters.
- A Ruderman Family Foundation study found that a mere five percent of characters with a disability was played by an actor with an actual disability.
Why is representation important?
Representation is one of the most effective ways to alter society’s perception and increase social change.
- Ends harmful stereotypes of disabled people
- Increase employment opportunities in the entertainment industry.
- Show an abled population what life experiences are truly like for a disabled person, increasing empathy and compassion.
SO WHAT CAN WE DO AND HOW CAN WE DO IT?
- Improve access to healthcare and human services.
- create access to data statewide instead of just nationally ( policymakers, public health professionals, researchers, advocates, educators, and community members can use localized data to alter positive change and the needs for the disabled in their communities).
- Create free & public education and counseling programs that promote physical activity, improve nutrition or reduce the use of tobacco, alcohol or drugs; and blood pressure and cholesterol assessment during annual health exams, and screening for illnesses such as cancer, diabetes, and heart disease. *
- Build collaborations with consumers, local health organizations, CDC, and other relevant partners. *
- Measure and document the National Centers on Disability impact using common methods of evaluation and reporting activities, such as the population reached by activities, and outcomes/impact indicators; and
- Identify the health needs of people with disabilities.*
- Address the disparity in the healthcare system as it comes to race/gender/sex injustice.
Here are some books that showcase a disability:
Disability Visibility: First-Person Stories from the Twenty-first Century – Edited by Alice Wong
A groundbreaking collection of first-person writing on the joys and challenges of the modern disability experience: Disability Visibility brings together the voices of activists, authors, lawyers, politicians, artists, and everyday people whose daily lives are, in the words of playwright Neil Marcus, “an art…an ingenious way to live.” A Vintage Books Original.
According to the last census, one in five people in the United States lives with a disability. Some are visible, some are hidden—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together an urgent, galvanizing collection of personal essays by contemporary disabled writers. There is Harriet McBryde Johnson’s “Unspeakable Conversations,” which describes her famous debate with Princeton philosopher Peter Singer over her own personhood. There is columnist s. e. smith’s celebratory review of a work of theater by disabled performers. There are original pieces by up-and-coming authors like Keah Brown and Haben Girma. There are blog posts, manifestos, eulogies, and testimonies to Congress. Taken together, this anthology gives a glimpse of the vast richness and complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own assumptions and understandings. It celebrates and documents disability culture in the now. It looks to the future and past with hope and love.
Nothing About Us Without Us by James Charlton
James Charlton has produced a ringing indictment of disability oppression, which, he says, is rooted in degradation, dependency, and powerlessness and is experienced in some form by five hundred million persons throughout the world who have physical, sensory, cognitive, or developmental disabilities. Nothing About Us Without Us is the first book in the literature on disability to provide a theoretical overview of disability oppression that shows its similarities to, and differences from, racism, sexism, and colonialism. Charlton’s analysis is illuminated by interviews he conducted over a ten-year period with disability rights activists throughout the Third World, Europe, and the United States.
The Pretty One by Keah Brown
Keah Brown loves herself, but that hadn’t always been the case. Born with cerebral palsy, her greatest desire used to be normalcy and refuge from the steady stream of self-hate society strengthened inside her. But after years of introspection and reaching out to others in her community, she has reclaimed herself and changed her perspective.
In The Pretty One, Brown gives a contemporary and relatable voice to the disabled—so often portrayed as mute, weak, or isolated. With clear, fresh, and light-hearted prose, these essays explore everything from her relationship with her able-bodied identical twin (called “the pretty one” by friends) to navigating romance; her deep affinity for all things pop culture—and her disappointment with the media’s distorted view of disability; and her declaration of self-love with the viral hashtag #DisabledAndCute.
Get a Life, Chloe Brown by Talia Hibbert
Chloe Brown is a chronically ill computer geek with a goal, a plan and a list. After almost – but not quite – dying, she’s come up with a list of directives to help her ‘Get a Life’:
– Enjoy a drunken night out
– Ride a motorbike
– Go camping
– Have meaningless but thoroughly enjoyable sex
– Travel the world with nothing but hand luggage
– And . . . do something bad
But it’s not easy being bad, even when you’ve written out step-by-step guidelines. What Chloe needs is a teacher, and she knows just the man for the job: Redford ‘Red’ Morgan.
With tattoos and a motorbike, Red is the perfect helper in her mission to rebel, but as they spend more time together, Chloe realizes there’s much more to him than his tough exterior implies. Soon she’s left wanting more from him than she ever expected . . . maybe there’s more to life than her list ever imagined?
Check out all of these books and even more on my bookshop!