Random Thoughts on Disability, Ableism and Erasure

Happy Disability Awareness Month

It’s taken me months to finally gather the energy to compose this post and the irony is that it’s my disabled body that’s made it take so long.

Every time I tried to get in the headspace to write I would be too tired, too weak, too fatigued to channel my chaotic mass of thoughts into a coherent cohesive narrative that made a semblance of sense.

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As a visionary, “type A”disabled person, it often feels like my “switch” is either turned on to marathon mode (i.e working like a workhorse before my battery runs out)

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or

trying to find the energy to drag myself to do the 50 million things on my constantly shifting never-ending to-do list…

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Finding balance is HARD work and seems to not happen nearly as much as I would like it to.

Being Disabled is a Full-Time Job

The truth is being disabled is a full-time job. It’s a constant balancing act of firmly anchoring oneself in the present, while simultaneously projecting how every action you take today will potentially impact you (for good or bad) tomorrow, the day after that, or some future date. The trauma of the past remains a constant in your peripheral and then there are the unbearable incessant feelings of guilt. The guilt that you aren’t doing enough. The guilt that you might do too much. The guilt of letting friends and family down when you need to cancel engagements. The guilt of feeling bad, because you feel bad. The guilt that the world won’t see you as being disabled enough to need accommodations. The guilt that someone else “has it worse” so you have no “real reason to complain. The guilt of comparing your “today” self with your “former” self.

I say all this to say that the constant ever present all-encompassing mental, emotional, and physical toll of living with an invisible chronic disabling condition; is a full-time job that I never get paid for.

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All this is on top of managing the symptomology of said disability and trying to carve out a career and a living in an insufferably capitalistic society.

And then there’s the imposter syndrome. Oh, the imposter syndrome. Whew.

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The constant feelings of worthlessness, questioning of my intellect, my ability, my genius. Somebody call my therapist…(can I afford therapy?)

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Ableism is Trash

Ableism is pervasive. Dictionary.com defines ableism as:

the tendency to regard people with a disability as incomplete, diminished, or damaged, and to measure the quality of life with a disability against a non-disabled standard. Ableism reinforces the idea that disability is a personal tragedy.

Our built environments, systems, structures, beliefs, and ways of being are explicitly designed to exclude. If you are not an “able-bodied” white male-identifying person then you probably have experienced exclusion by at least one of the systems that you need to interact with on a daily basis. The COVID-19 pandemic illuminated just how segregated our communities, our neighborhoods and our social circles are and the fragility of the systems that we rely on every single day. Disabled people, the elderly, and those living with mental illnesses were excluded and denied access to life-saving services through no fault of their own. Cognitive dissonance is real and many times I find myself questioning my own lived experience. It’s easy to slip into the mythical toxic mindset that you can push through the pain or “pull yourself up by your bootstraps.” The reality is our systems are designed to exploit and hoard most of the resources for a select “able-bodied” few.

Why We Need Disability Awareness

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We need disability awareness because disabled people exist. According to the Centers for Disease and Control Prevention (CDC), the United States counts around 61 million adults with disabilities. That represents 26% of adults in the US or 1 in 4 adults. Everyone knows someone that is disabled and even if you are able-bodied as you read this, tomorrow you too can suddenly be living with a life-changing health condition or change in your ability to access the world. However, our media and our culture would have you believe that disabled bodies are a burden, are wrong, and that they don’t exist. Disabled experiences are erased and silenced and the voice, image, and experiences of disabled people are mocked, demeaned, lampooned, and dismissed. Even in history, disabled people are erased. Many people don’t know that prominent figures such as Harriet Tubman or Frida Kahlo lived with disabilities.

We are discriminated against at work, at school, in public, and even by our own families.

Disabled Representation Matters

Representation matters and it is important that we uplift and amplify the stories and experiences of the spectrum of disabilities that affect so many people around the world. This is why I share my own stories on social media and in my writing. The more we talk about disability the more we destigmatize and remove the “shame, guilt, and bias around it.

This is why accessibility is important for everyone to talk about and more importantly equity is vital.

I am grateful to have founded and been leading an organization that makes a strong effort to center the experiences of disabled people and make accessibility one of our core values. I honestly didn’t have a choice. In a world where many employers don’t know or don’t care about ADA accommodations, self-care, and mental health days I was forced to become an entrepreneur and be the change I wanted to see in a work environment. I remember when I wanted what I currently have and despite being disabled I am doing the damn thing.

I think you for all of your support, and for reading this essay about why disability awareness matters.

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“Accessibility is important for everyone to talk about and more importantly equity is vital.”

About Calvin Eaton

(he/his/him) Calvin Eaton is a disabled community educator, content creator, and social entrepreneur, whose area of expertise includes antiracism, equity, justice, instructional design, and program development. In 2016 Mr. Eaton founded 540WMain, Inc. a virtual non-profit organization and antiracist education brand that promotes justice for