You can listen to an audio version of this essay here.
As told to Editor-in-Chief Denarii Grace.
Rooted in Rights would like to acknowledge that this essay is the product of a collaborative effort between the storyteller and our team, with the goal of making access to storytelling and publication as easy as possible. This is what accommodations can look like for disabled writers! The audio recording of this essay is what accessibility can look like for disabled readers!
CONTENT NOTE: medical ableism
According to legislation like the Americans with Disabilities Act, in the U.S. disabled people have, among other things, the right to reasonable accommodations in places of public accommodation, including doctors’ offices and private hospitals. This includes the right to alternative forms of communication that meet our varied needs.
But you wouldn’t know it based on the experiences of many disabled people, including yours truly. When I was recently hospitalized, I was repeatedly criticized for ineffective communication while being forced, despite my protestations, to engage with my providers in a way that I couldn’t understand. I struggled due to the dual effects of both my disabilities and the side effects of medications, but I was repeatedly shut down when I tried to explain my impairments. Instead, I was accused of being intentionally “difficult.”
The ADA, and civil rights legislation like it, protects the rights of all people with disabilities, including those of us with invisible disabilities. But time and time again, as I muddle through trying to process and remember information and communicate effectively with my providers, I instead have the symptoms of my disabilities thrown back in my face in medical settings.
Too often healthcare providers are quick to disbelieve and, therefore, dismiss my disabilities, rationalizing their assessments because they can’t see what I feel in my body every day. Instead of compassion, I’m treated with derision, labeled everything from “demanding” to “uncooperative” and “non-compliant.”
Being chronically ill already comes with an overwhelming set of challenges. My body has limitations; that’s not a declaration of defeat, but an understanding of my reality. But when faced with a “care” system that burdens us with ignorance (and sometimes blatant hostility), engaging with the institutions that might provide the tools we need to meet those challenges is beyond tiresome. In fact, sometimes it’s downright impossible. So many of us often fall through the cracks.
Because I engage with the medical industrial complex so often, I regularly think about what makes it so apparently dysfunctional. What would make my life better as a multiply disabled person? What changes would benefit my community? The moments when healthcare providers get things right—and why it worked—also stand out, of course.
And one of the first things that comes to mind is the reality that implicit biases are so ingrained in our culture. I am a multiply disabled, chronically ill South Asian cis woman with a Ph.D. I’m also on Medicaid. All of these identities and experiences—and then some—enter the room with me when doctors, nurses, and other healthcare providers engage with my medical history and me.
Implicit bias isn’t a conscious decision (though it can fuel them). It’s the result of a barrage of societal messaging over time that asserts that certain bodies, certain groups of people, just are a certain way (bad, uneducated, unhealthy, lazy, dishonest, “hysterical”, etc.). We subconsciously absorb those messages, then we’re expected to infer that those marked as bad (or less good) are fair game for mistreatment—not just in healthcare, but at school, at home, at work, in recreation and entertainment, in the legal system, and in public settings.
It’s well-documented that, when you’re automatically marked as Other in healthcare settings, it has tangible and detrimental effects on the standard of care you receive. Too often, this leads to delays in (or denials of) diagnosis and treatment. Tackling implicit bias, othering, and other concepts that contribute to the harm of marginalized groups is essential to improving the experiences of people with disabilities in healthcare settings, including having our needs met via accommodations.
Another barrier to receiving accommodations in healthcare is the fact that many people are unaware of their rights. And it’s not just the Americans with Disabilities Act that affords them to us. Section 504 of the Rehabilitation Act and Section 1557 of the Affordable Care Act are just two of many laws implemented over the decades to uphold our human rights.
To be sure, many healthcare providers are also unaware of the rights of disabled people. Of course, like all people in power, they should be held to a higher standard when it comes to the rights (and needs) of disabled and chronically ill patients, particularly since we interact with the system more than our abled counterparts. You can be the most informed disabled patient out there, but you’re not going to get anywhere if the person in power is uninformed and unwilling to comply.
What’s more, while it’s important for us to know as much as we can when possible, the onus should not be on people struggling to get out of bed, rub two coins together, or access information to be the experts. It’s common practice for professionals to follow the literature, studies, and developments within their field, to know the best practices within their chosen vocation and assess when changes or breakthroughs arise. Yet too few healthcare providers actually take advantage of the access that, unlike for many of us, comes so easily to them. And too few institutions emphasize the importance of doing so, to best support their patients.
That being said, it’s no surprise that many people are unaware when the histories of the disability rights and justice movements are rarely taught in educational settings. In addition, inadequate efforts (if any) are made by large public and private institutions to educate the general public about our protections under the law. It is often left up to individual disabled activists, small advocacy organizations, and the grassroots movements we create to conduct this critical work, despite not typically having the same funding and reach as our counterparts.
If we don’t know what we’re entitled to, we’re much less likely to advocate for what belongs to us. If doctors don’t know what we’re entitled to and how accommodations can be implemented, they’re less likely to take our needs seriously or follow through.
Alas, when I first began advocating for myself in healthcare, I entered with the naive assumption that, if a disabled patient expresses concerns about their needs or the quality of their care, institutions would strongly desire to remedy discriminatory practices and policies to avoid litigation, if nothing else.
But even when we do advocate for ourselves, we often face more barriers through resistance from the providers that are mandated to care for us without discrimination. And the power disparity between patients and institutions (and the healthcare providers who work therein) cannot be ignored. When someone with less power makes a complaint or shares their needs, they’re more likely to be shut down. The harm that causes can sometimes be irreparable.
And, as life-changing as they’ve been for many of us, as brutally as so much of it was fought for, another barrier to adequate accommodations is sometimes the legislation itself. To be clear, laws like the ADA, IDEA, and others have been monumental watershed moments in the history of the disability rights movement in the U.S. As a group, we would not be where we are today without the sacrifices that have been made. However, the fact of the matter is that laws like the ADA have not gone without their fair share of critiques, from the disabled community itself.
One of the most impactful limitations of legislation governing our rights is the sometimes-vague language used in the laws. When phrases like “reasonable accommodations” are open to interpretation (by those in power, no less), this can leave gaps through which the most vulnerable can easily fall through. I know because it’s happened to me.
Moreover, many healthcare providers mistakenly think that, if a patient makes a request and they can’t (or refuse to) do that one specific accommodation, their job ends there. They think that they just get to say “no.” But the law requires that they offer an equally effective alternative accommodation option. You can’t just not accommodate a disabled person in public spaces. But, again, when the language is so ambiguous it can be difficult for providers and institutions to gauge what their obligations are—or allow them to deliberately pass the buck, which creates an uphill battle for us to assert our rights.
Connected to the issue of ambiguous language is the lack of standardization and plain language. “Legalese” is a pervasive problem across various aspects of the law, not just with regards to disability rights. You can’t know what your rights are if you don’t fully understand what you’re reading. Standardization of terms, definitions, and even scenarios can provide the clarity necessary to undergird our rights. If everyone is on the same page about what words mean, what counts, what our roles are, we can reduce, if not eliminate, the obstacles that disabled people face when asserting our needs in medical spaces.
Of course, examples of the right way to do things—or to learn from common mistakes—do exist. At the same hospital I mentioned in the beginning, I eventually requested a disability support person to help me manage communication and decision-making.
I’ll admit that I did receive some initial resistance from the charge nurse. The hospital has a very strict visitor policy that prohibits any support person from remaining at their facility beyond the designated visitor hours. She also seemed to assume that I needed to provide an impossible amount of paperwork to prove disability.
However, I was pleasantly surprised to witness her suggest that she confer with the hospital’s ADA coordinator or compliance officer. She listened, my need was honored, and—believe it or not—she apologized for asking me for medical documentation, acknowledging that, as I’d asserted, it is not required under the law when a disabled person makes a request.
That being said, both in the U.S. and around the world, we have a long way to go toward treating disabled people with dignity in healthcare settings. Addressing implicit bias and its consequences, lack of education and empowerment, and inadequacies in the laws themselves would all go a long way toward remedying this pervasive problem.
Accessibility, at its core, is about the ability of a disabled person to access information, spaces, and services with the same ease that abled people do. When it’s inadequate or nonexistent, we can’t just move on and say “Oh well.” We lose access to life-saving and life-improving care. When our health is worsened, we’re more isolated from our community and the world.
It’s about damn time that we received the better treatment we’ve always deserved.
About Rooted In Rights
Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights