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Disability Rights Have a Long Way To Go

By Julian Gavino, he/him


Every year when Disability Pride Month rolls around, I struggle to pin down my complicated feelings exactly, but there’s a mix of anger, resentment, hope, fear, pride, power, and exhaustion—a whirlwind of contrast rages on in my disabled body.


This year, on July 26th, we celebrate the 31st anniversary of the Americans with Disabilities Act. If you have never been immersed in disability culture, you may view the ADA as a monumental accomplishment. The ADA was and still is an excellent idea for the future of disabled Americans, but it has been poorly executed and rarely enforced. It taunts us with buzz-words like “accessible,” “improved,” “accommodation,” “fairness,” “inclusiveness.” It promises disabled folks a world where they can obtain what they need not only to live, but to thrive within their communities. But its reality is more like folks who are barely living and most certainly not thriving. Ableism is still very alive and well today. 


The irony of America’s Independence Day existing in the same month as Disability Pride really heightens my conflicted feelings, especially this year. The year 2020 provided a refresher on just how divided we are when it comes to politics, race, and inclusivity—the issues have been brewing, but COVID, isolation, and political extremism just seemed to really tip America over the edge. Confronting these issues on both a massive and personal scale every single day has gotten really exhausting. As I peer out of the window into the sprawling city, I see a brilliant array of fireworks, stars, and stripes, but I do not have stars in my eyes.


The Effect of the Pandemic On the Lives of People with Disabilities


The pandemic displayed some of the ugliest, most widespread disregard of disabled lives that we have seen in a long time. The UK estimated that six out of every ten people who died from coronavirus were disabled people—many of these folks were unable to visit their doctors in-office, lost access to their caregivers, life-sustaining treatments, and health insurance during the pandemic. Perhaps the most disturbing part is that we do not have all of the numbers. It is not uncommon for minorities to be unaccounted for—and if you are a part of multiple minority groups the odds are further stacked against you. As the National Health Law Program explains, 

Race and disability status expose Black people with disabilities to two separate sets of COVID-19 risks. Black people in this country exposed to COVID-19 have far higher case, hospitalization, and death rates as compared to their white counterparts. This lack of data leaves much unknown about how Black people with disabilities are harmed by COVID-19. The most likely scenario is that Black people with disabilities are being exposed to COVID-19 at a much greater rate and with a higher death rate than people who are not Black and do not have a disability."


I shiver to think about the totals.


Unaccounted, Mistreated, Forgotten


Like many disabled people, I am in the hospital… a lot. Deciding whether to go or not to go for ailments became much harder; the hospital was not strictly a place of safety anymore, but a place where you could catch COVID. Many months ago I shared a frightening ER visit I had at the height of COVID—the hospital beds were at max capacity due to the virus and an unusually high number of traumas. I was having a seizure and there were no beds available. That night, I laid on the hospital floor alone as a man nearby died from injuries sustained in a car accident, waiting for his turn in the operating room.


The disabled community watched in horror as news sources assured people that only those with comorbidities or older adults died of COVID, and that if you did not fit this description there was no need to worry. It only got worse as doctors and states unlawfully mandated Do Not Resuscitate orders for disabled folks, made decisions to ration ventilators based on age and ability, and sometimes even turned away these patients altogether. Make no mistake, this was modern eugenics, widespread in detention centers, community homes, foster homes for disabled children, senior homes, and medical centers. The ADA failed us. 


You know how your car insurance bails on you when you get into an accident even though it promised to pay for the repairs? It was kind of like that. The government did not uphold their promise to protect disabled lives. Disabled people always knew they were last on the list of things to care about, but seeing this disregard on such a massive scale is a type of pain that is hard to put into words. It is hard to believe that we get left behind, considering we are the largest minority in the whole world, sitting at an estimated billion.


Background On ADA Requirements + Access To Resources


The ADA has positively impacted many areas of America in terms of lifting physical barriers by requiring ramps, elevators, braille additions, wider doorways, etc. But many rural areas and even some urban areas remain untouched—many schools around the country remain segregated, physically and mentally inaccessible to disabled students. The wording of the ADA is vague and serves as more of an ask than a demand to make America accessible. Take the issues of employment, housing access, income, medical insurance, marriage, and thriving in one's community—the barriers to these are held up by a bureaucratic maze. Today, disability discrimination lawsuits and complaints make up for the largest category of cases filed with federal agencies.


The requirements around a person with a disability are steep in order to fit the bill. Currently, disabled individuals on Supplemental Security Income (SSI) cannot have more than $2,000 in assets and their monthly income cannot exceed $65 per month if they are able to work here and there. If you are lucky enough to be granted access to SSI, you will receive a meager $794 a month, which is only 50% of the average cost of a one-bedroom apartment in the US today. Consider that the average monthly expenses for one individual living in the US totals $3,189, or $38,268 annually—this is best described as forced poverty.


But many people may not even qualify to receive these meager resources. 


Before you can even apply, you have to have a long-standing medical history, meaning you would have to have seen numerous doctors and received medical care. A lot of this is rooted in white supremacy as well as forced poverty. BIPOC receive worse medical care in 40% of the U.S. Department of Health and Human Services quality measures, which includes receiving general treatments, pain treatments, government resources, and a diagnosis to begin with. This is staggering information considering Black Americans are more likely than Non-Hispanic white Americans to have a disability in every age group.


To put this into a tangible perspective, on average, it takes about ten to 20 years to be diagnosed with one of the genetic conditions that I have, Ehlers Danlos Syndrome. If you are already behind the eight ball due to racial disparities in medical care, ten to 20 years becomes an unfathomable amount of time. 


It is important to understand that while certain resources do exist, it takes privilege to access them to begin with—and even then they are subpar. Even with privilege on your side, you will be scrutinized underneath a microscope and forwarded a list of demands to meet. You can be disabled, but you have to be the “right” kind of disabled to make it. And even that is not a guarantee. I am privileged, white, and financially stable and still found myself in a legal battle with my insurance company this year over life-sustaining treatment they refused to cover. Even though I am financially stable, I still cannot afford this treatment. I was unable to afford a lawyer out-of-pocket, and the state service lawyers were booked due to state insurance debacles COVID had caused in my city. I spent three months of my life learning legal jargon to represent myself in court against my insurance company, and I won. It took privilege and time not granted to everyone to achieve this. It begs the question: who is this system built for? The answer is the ultra-wealthy, those who can pay for these treatments. Let me tell you, I do not know a lot of ultra-wealthy disabled people. If this is not you, you will either die due to lack of treatment, or if you have some semblance of privilege and time on your hands, you may get it. But, it will take three months of your life and obliterate your mental and physical health. 


A Covid Shift


Interestingly enough, during COVID we saw the world shift to make accommodations that disability population had been asking for for decades, such as online jobs, online schooling, rent relief, and even building-accessible outdoor seating. When non-disabled lives were affected, the country was suddenly able to jump into action to adapt. non-disabled people had to cope with the suffering that some of us face on a daily basis—losing jobs, losing housing, or being trapped in the house. These are things that never go away for the disability community. We do not have a pandemic that clears up within a year only to return to our normal lives. The isolation and fear felt on a mass scale during this past year is only a small glimpse into disabled life. 


We face some of the highest rates of poverty, homelessness, and incarceration. Numbers do not lie. And I think these statistics, along with eugenics rearing its ugly head, show us that the ADA needs quite the tune-up. 


Inclusion in theory is not as good as inclusion in practice. What we see in the ADA is just a framework of what the world could be for disabled Americans. The foundation is already laid out, we just need to make it fit to today's standards. 


The Future of the ADA


I am beyond grateful to the activists that came before me. Judith E. Heumann, the mother of modern disability advocacy, and countless others occupied federal buildings during the 504 Sit-in to insure the passage of the Rehabilitation Act of 1973 (the precursor to the ADA). Seventeen years later, disability activists inspired by this very sit-in would participate in the March 12, 1990 Capitol Crawl. These protestors abandoned their mobility aids to literally crawl up the Capitol’s inaccessible steps. It forced those in power to see the struggles this community faces on a daily basis whenever they open their door to the outside world.


It worked. Congress was forced to respond, and four months later the Americans with Disabilities Act was officially signed into law. Since signed into law, only small changes have been made between 2010 and 2013. 


Right now, we have an opportunity to make a change—disabled and non-disabled people alike.


The Supplemental Security Income (SSI) Restoration Act of 2021 has been introduced in both the House and the Senate. If passed, several life-changing updates will be made as listed below from the Restoration Act itself:


  • “The SSI benefit rate will be increased to at least 100% of the Federal Poverty Level, adjusted annually, so that no one receiving SSI will be left to live below the poverty line.”

  • “Low-income seniors and people with disabilities who can’t work enough to meet all their basic needs will be able to save up to $10,000 and couples will be able to save up to $20,000 for emergencies such as car repairs, new roofs, and other unexpected expenses, without losing benefits.”

  • “Individuals who are able to work will be able to earn up to $416 a month without being penalized.”

Visit Justice in Aging to continue reading all the updates this Restoration Act is proposing to improve disabled lives. 


The time to act is now. We have not had an opportunity like this in decades. Disabled activists before me did not fight so hard only for us to still be experiencing so many obstacles. Time after time, we are blamed for not being able to participate in a society that refuses to make space for us. 


Social media has been an excellent vehicle for activism in general, but especially in the disabled community. Not everyone has the ability to take to the streets or leave the house at all, but with the internet, almost anyone can have a voice.


Folks to Follow


On every platform you visit you can find disabled folks continuing to make history...


Imani Barbarin is a Black disabled creator who uses her platform to encourage conversations surrounding racism and the disability community. During the Capitol insurrection she recounted wheelchair user Madison Cawthorn riling up the riots and fanning the flames of white supremacy. She not only encourages the government and medical professionals to understand the connection between racism and ableism, but she urges us to look within the disability community itself, noting that disabled people often feel threatened when she discusses being Black and disabled, and that white disabled people often exercise the only privilege they have to exercise: being white.


Madison Lawson is a disabled writer who has turned out pieces for Vogue, Glamour, Allure, and Teen Vogue. In her most recent piece, “Why Disability Representation Is Crucial to Building a Better, More Inclusive Fashion Industry,” she discusses how important disability representation is in the media, how far we still have to go to make the industry accessible, and why we need fashion-forward adaptive clothing. 


Andrew Gurza is a disabled creator who co-founded the first fully-accessible line of sex toys. He also hosts a podcast called Disability After Dark that aims to shine a light on conversations surrounding disabilities and sex. 


Change is happening all around us, I can feel it.


Every year when Disability Pride Month rolls around, I see more and more celebration and representation than the year before. 


As a person who is also queer, I have seen the LGBTQIA+ community blossom, become more mainstream and normalized, and fight tirelessly to pass or block bills in the US government. I would love to see Disabled Pride make it to such heights with a strong ally backing. But to make this happen, we have to all get involved. We—and by “we” I do not just mean the disability community—have to all collectively say: 


I am not comfortable living in a society where disabled people can lose their benefits because of having children or getting married.


I am not comfortable living in a society where unemployment for disabled people is twice as likely as for non-disabled citizens. 


I am not comfortable living in a society where disabled people cannot complete or even access higher education due to inaccessibility.


I am not comfortable living in a society where 30-50% of police brutality involves Black and Brown disabled lives. 


And I want you to know that we have only barely scratched the surface of this complex conversation. With that, I will say:


The disabled revolution is long overdue. 


Written by Julian Gavino for Youth To The People