Internalized Ableism is Really External

This week I participated in a panel for Disability Pride Month hosted by Catarina Rivera aka @blindishlatina (give her a follow). The topic was Disability Pride Month: A Discussion for the Workplace and Beyond. With over 200 folks tuning in to the virtual conversation it was a place of pride!

There were two questions I was asked that I want to share here with you. The first question was what does disability pride mean to me? Fortunately or unfortunately I do get asked this question a lot. Non-disabled people struggle with the idea that I can celebrate my disabled body. Like why the fuck would I do that? And my answer is simple. I’m extraordinary.

My body is actively working daily to kill me. I’m not being dramatic, I’m speaking the truth. My heart thinks it’s having a heart attack everyday making my risk of heart attack incredibly high. It’s one of the reasons why I frequent the emergency room a lot. My spine is actively fusing together. My body doesn’t know how to process collagen which is in every ligament, muscle, artery, cartilage, tendon, organ, etc. in my body. Eating is hard for me. And my rare kidney disease doesn’t allow me to take anti-inflammatories which is the one thing that can relieve my body from pain.

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See, my body is actually working every single day to kill me. And every single day I wake up. I’m amazing. Work full time at my own company. Write. Speak at an event. Rinse and repeat. As I dictate this because my type of Ehlers Danlos Syndromes (EDS), mEDS, drastically affects my hands making them partially dislocate daily, a tear rolls down my face. I am a writer and some days my fingers and wrists stop me from what I love. My life is hard but I don’t take it lightly with how I’m able to find joy every single day. To make other people laugh. To dictate instead of type. To pay my $1,500 a month for health insurance (highest level PPO because I need speciality care). To run a business for 11 years nine of which I’ve been disabled.

My body doesn’t want me to be amazing and yet here I am.

Disability Pride is celebrating how my body is actively against me. Healthcare is actively against me. Specialists are actively against me. Health insurance is actively against me. And I’m still able to get enough care to live my life fully. I wrote a whole ass book and put my disabled body on the cover in hopes that people would have compassion and understanding for the pride that I have and for other disabled and or chronically ill/pain folks to feel seen. So they could also have pride.

Disability Pride Month is a time for disabled folks and non-disabled folks alike to celebrate how we survive in spite of the systems and structures that want to kill us. For non-disabled folks it is a time to prepare for your future. You will be disabled one day whether it’s temporary or permanent. So how you treat disabled people today is how you would treat yourself or a loved one tomorrow. Disability Pride Month helps take away the stigma and fear around the identity and lived experience of being disabled.

Disability Pride Month helps folks understand the humanity of disabled people.

Which leads to the second question I would like to share which is how does internalized ableism show up for me? You may not know what internalized ableism means but don’t worry I’ll break it down for you. You know how a non-white person can acclimate or act like a white person that’s internalized ableism. A disabled person hides, acts or limits themselves because they want to appear non-disabled. Ableism is a root, one of the foundations, of white supremacy because white supremacy is rooted in being superior to others. Disability is viewed as inferior. That’s why you don’t see a lot of leaders or celebrities who are disabled and or openly disabled. Many people think disabled folks are not smart or independent or fuckable. And those feelings of society can be projected on the person who lives with the identity of being disabled.

I answered the question by saying internalized ableism is not my problem, it’s other people’s problem. It’s the systems and structures that make us feel inferior because we’re not being accommodated. Not believed. Ignored. Not treated with the healthcare we need. That being “normal” is superior to being disabled. Having to constantly prove our existence. Being in a position to explain what our disability is even when by federal law we do not need to do that. Did you know if someone says they’re disabled that’s the end of the conversation. The word of disabled or disability is the reason why accommodations should follow.

But they don’t.

Especially if you have non-apparent or invisible disability or dynamic disability. Dynamic disability means someone can have non-apparent and apparent disability throughout the day, throughout the week, throughout the month, throughout the year or years. You know enough about me by now to know that I am a cane user. I have quite the collection. I have literally gone out to an event and was able to walk there but by the time I arrived I could not move so this is one of many reasons why I have not one but two canes in my car (Virgo life just in case I don’t put it back in my trunk). I am dynamic.

Here’s why internalize ableism is not my problem and it’s your problem. You regardless if you are disabled or non-disabled want to deem me disabled. You want to say she looks disabled enough to be able to park in Americans with Disabilities Act or ADA parking. You want the disabled person to be a person who uses a wheelchair or walks or talks differently where you may say that’s not normal. You want the disabled person to be suffering just enough so that they are deserving of the accommodations they need.

You are the problem of internalized ableism, not me.

One of the participants shared the following to my response about internalized ableism:

Dr. Akilah,

That was powerful, and I felt it to my core. As a disabled veteran, I often find myself having to explain why I am disabled and justify why I need certain accommodations. It can be exhausting to repeatedly prove something so personal, especially when many disabilities are not visible.

Your words truly resonated with me and reminded me how important it is to create spaces where people are trusted, supported, and not required to constantly defend their lived experiences. Thank you for sharing such a meaningful and important perspective. It was both validating and inspiring.

I am honored I can validate and inspire disabled people but trust me that was never the plan. When I learned I was disabled I had no problem with folding the identity into being a Black person and a woman (other heavily discriminated and life-threatening parts of my intersectionality like disability). But I knew I would have to now live my life in a Black body (where our pain is not believed) proving my existence, navigating ableism, and not looking disabled enough 100% of the time for other people’s comfort. You know my motto is everyone needs to learn how to be comfortable being uncomfortable. So, if you are one of those individuals who’s questioning someone’s disability, if they’re parked in ADA, why they need accommodation in the workplace, and if they’re truly even remotely disabled. YOU ARE THE PROBLEM. Take that “believe women “energy and turn it into “believe disabled people” energy.

Ablelism lives only because of white supremacy. As a Black person I dismantle white supremacy so that I don’t have to deal with racism, sexism, xenophobia, classism and ableism. But I really shouldn’t be doing this work because I didn’t create it, white people did. And white people also fuel ableism with their strive for perfectionism and superiority. That’s why I always say do the work. White people need to do the work and if they did the work I wouldn’t have to prove why Disability Pride is important, my Black history is important, why female first are still important on the list goes on.

This month I want to encourage you to follow disabled creators. To buy from their shops. To read their books. And to check your bias around your internalized ableism and how you add to ableism. Friendly reminder this is a great time to become a paid subscriber to support me, a disabled baddie, buy my book, or anything for my shop. You know why? Being disabled is expensive as fuck. I was in the emergency room this past weekend. I have an invasive heart test coming up that will have a lovely copay. I’ve just been prescribed three new medications for my newest rare diagnosis. Anyway hopefully that helps you think that my body that is actively trying to kill me is disabled enough.

Please take the time to celebrate disabled people this Disability Pride Month!

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