Julian Gavino shares his thoughts on internalized ableism, living in an ableist society and what disability pride means to him.
July marks Disability Pride Month. I would venture to say you probably have never heard of it though. Well, to be honest with you, neither had I up until a year ago, and I, myself, am disabled. For the majority of my life I was invisibly disabled, and for the past six years I have been–in some form or another–visibly disabled.
This year, we are 30 years out from the creation of the Americans with Disabilities Act, or the ADA. Some will say we are celebrating. Some will condemn this. Others may not know or may not even care. It is not my job to tell anyone how to feel. It is, however, my job as a disabled person and as an advocate for disability to raise questions. If you do a quick Google search on the ADA, you will find words like “improved,” “accessible”, and “inclusive.” The problem is that these set of words are not an accurate reflection of reality today. Those words are what we strive for, but not necessarily the truth. The second set of words that commonly come up in searches, often paired with violations of the ADA, are “compliance,” “reasonable accommodation” and “fairness.” Basic rights like education, workplaces, and healthcare all remain conditionally accessible or just flat-out inaccessible.
Protests for the Rehabilitation Act of 1973 pictured above. Source: Disability Pride NYC
Words such as “compliant,” which is defined as a “willingness to comply, or submit,” implies that the individual or establishment must be willing to oblige. “Reasonable accommodation” makes it sound as if an individual’s fundamental needs have a limit, and that if you ask for too much, you will be declined. These statements carry a heavy negative connotation, and the language of the ADA itself hardly does itself justice when it attempts to describe these limits and guidelines.
I do not speak so harshly to diminish the accomplishments of the disability activists and organizers who came before me, and I do not deny the ADA has been a significant achievement for disability rights. However, this is a 30-year-old document that saw only a brief period of updates between 2010 and 2013. We can hardly expect it to stand up to our changed modern America.
This milestone anniversary has got me thinking: Where are we now after all this time? I believe an accurate definition of the ADA today is this: the ADA was a written commitment from the federal government to do better for disabled Americans. What went on then and what has been going on since behind closed doors, I will never know. I can only speak on my disabled experience and the ripples, or lack thereof, that I feel from the ADA.
Writer Julian Gavino with service dog Atlas. Source: @thedisabledhippie Instagram
I was born when the ADA was still in its infancy. But for my entire life, I was taught that “disability” was a bad word and that to be disabled was also a bad thing. When I eventually became disabled myself, these thoughts ravaged through the recesses of my mind. This belief made its way into every open space in my body. It made a home there. I later recognized it and learned to call it “internalized ableism.” Disentangling your culture’s projected ableist views from your mind is enough to work on in therapy for a lifetime. This “-ism” is so rampant that it sometimes poisons the well of my own community.
Much like my own voice of self-doubt, internalized ableism can lead a disabled or chronically ill individual to constantly question their own validity, especially if they are undiagnosed or in the process of receiving a formal medical diagnosis. At its utter worst on an intra-community level, this can manifest as “faker culture.”
We’ve seen a multitude of examples of this behavior ranging from individuals with Multiple Sclerosis questioning the validity of Selma Blair’s illness to individuals with Ehlers Danlos Syndrome questioning Jameela Jamil’s. This internalized ableism reflects outward and reinforces societal ableism. If you do not fit a specific criteria of stereotypes, then public eye or not, you may be questioned by able-bodied people and disabled people alike.
Jameela Jamil retorts ableist “faker” claims. Source: @jameelajamil Twitter
When I look inward and ask who I am as a disabled person, here’s what I can say with my whole heart after a childhood of only knowing self-loathing: I am proud to fight for disability rights. I am proud to stand up for my community. I am proud to be in fashion and media representation. I am proud of the work I do. I can also say that I am proud that I am… Resilient. Strong. Adaptable. Brave.
But these concepts are the very tropes and stereotypes that harm our community. These are merely the characteristics that American society wants to see out of us. We have “the cured one,” “the overcomer,” and “the brave man in a wheelchair pumping his own gas.” It makes others comfortable if we “overcome in the face of adversity”. Within the framework of these ideas, I and others are only allowed to be disabled in ways that are digestible to an able-bodied audience.
This mindset is often exploitative. Some have gone so far as to call this “inspiration porn,” meaning that able-bodied people look at our personal achievements and positive character attributes and receive personal gratification from it. This “acceptance“ of our disabled experience is only at the surface level, much like my positive self-assessment. This kind of positivity is toxic, and it distracts from the real issues: the ones that strip us of our basic rights or bar us from necessities. There is no amount of feel-good self-talk or pandering that “overcomes” these.
A prime example of inspiration porn. *Major eye roll*. Source: Happy True Life on WordPress.
I refuse to acknowledge my braveness in “overcoming” society’s absence in showing up for me as long as I have no choice in it. Do not be fooled into thinking this is me saying we are not brave. In my opinion, we are the strongest people I have ever had the pleasure of knowing.
The act of being brave is not the issue. We should not have to be brave. Our reality is forced adaptability. We do not get over our disabilities. We learn to live with them. We have to, because there is no other choice. Our bravery is the result of being forced to weave in and out of blockades that were created and perpetuated by an ableist society. Everything that we tiptoe around is rooted in selfishness. It is always for someone else’s comfort and convenience at the expense of our own quality of life.
I just wish we as disabled people, as disabled individuals, could take our narratives back. If only we could realize that the constructs of what disability looks like and how it is defined by medical criteria and by legal documents were created by and within an ableist society, then maybe we would not use these lenses to look at one another. This mindset hinders our community. It creates division, promotes gatekeeping and prevents us from organizing and making bigger waves for advancing disability rights for all.
I’ve been harsh on our community. For all that we’ve had to battle within ourselves and within our community, we still accomplished bringing congress to task to create the ADA all those years ago. And if there is anything I’ve learned to appreciate about the ADA, it’s that the onus shouldn’t entirely be on us. Yes, there is so much to fix within our own community, and we will.
But we can not do that when we are still forgotten about outside of our community.
Who are our allies? How can we seek to accomplish extra-communal allyship on the level of the LGBTQIA+ community? It just is not there. All of our grassroots national efforts and our local community organizations have something in common: it’s working for us by us. And it is remarkable. It is no secret that physically organizing is difficult for many of us.
Source: @HabenGirma Twitter
Which is why we need able-bodied allies, yet we are not seeing a big turn out from abled allies. In an age where white voice actors are demonstrating allyship for BIPOC by stepping away from roles depicting them, I still see us represented in media by non-disabled actors portraying disabled characters in demeaning caricatures such as Come As You Are, a film depicting a sausage party of disabled young men being taxied by a black woman to a brothel. Shockingly, this movie, released in 2020, is a remake of a Belgian film, Hasta La Vista, which came out in 2011, a year following the first major update to the ADA.
We are the largest minority group out there. Yet disability identity is secondary to other axises of oppression, even when it is often disability that further disadvantages other oppressions. Black disabled Americans, for example, are especially vulnerable to violent police interactions.
Black Americans as a whole are also statistically more likely to have a disabling condition, including post-traumatic stress disorder. But complex disability-related concepts such as these are rarely seen outside of the disability community itself. It is time to leave the nest before we continue another 30 years with minimal movement. It seems we are still stuck on basic human rights conversations surrounding disabled individuals. How can we dismantle something whilst being seen as subhuman?
The reality is that I struggle to come up with something innate to be proud of. I struggle to say those words, “I am proud to be disabled.” I do not feel like I am allowed to be yet. I do not yet feel like that space has been created. There are forms of it, sure. Nonetheless, those forms are still budding. They are simply seeds. These spaces are often still rooted in ableism. They do not yet belong to us. We need something that is only ours. I do not know what that looks like.
I am reminded of this daily.
Writer & Editor’s Note:
My message involves representing my respective trans and disability communities through multiple mediums- writing, art, modeling, and content creation. I remember never seeing anyone in mainstream media who “looked like me.” My dream is to normalize and destigmatize trans and disabled bodies in the media.
— Julian Gavino
When Julian invited me to proofread and edit this essay, I recalled A.H. Reaume’s “Why My Novel is Dedicated to My Disabled Friend Maddy.” Reaume, who has a traumatic brain injury, describes disabled interdependence: the collaborative teamwork between disabled people to achieve goals that we are disadvantaged to accomplish as individuals. Modern disability rights is the product of large scale disability interdependence. It didn’t begin with Michael Masutha’s and William Rowland’s rally cry of “Nothing about us without us” in apartheid-era South Africa, and it didn’t end with Not Dead Yet nor the Autistic Self Advocacy Network. It always has been, and always will be. While plucky individualism is inspiring to non-disabled people, disability interdependence is what makes me proud to be a part of the disabled community.
— Ugly Coyote
Written by Julian Gavino
Edited by Ugly Coyote
Feature image by Amanda Crommett