Why Disability Pride?

In our society, disability is framed as a purely negative experience. A disabled life is a life full of endless pain and struggle. To be disabled is to be useless, weak, dependent. Being disabled is a sad, painful existence and becoming disabled is one of the worst things that can happen to anyone. 

But that’s not true. Or at least, it doesn’t have to be true.

Also, if your automatic reaction to that last paragraph is “No way, I don’t think that!” please keep reading anyway.

Disability Pride doesn’t mean the same thing to every disabled person, and there are disabled people who don’t like the idea of Disability Pride. I used to feel uncomfortable thinking about the words “disability” and “pride” together. What am I supposed to be proud of, exactly? 

A friend explained that pride is the opposite of shame, and that helped me understand the concept better. Being sick, being disabled, being unable to do things that everyone else could do has always been a great source of shame for me. So for me, a major part of Disability Pride is recognizing that disability is not an inherently shameful thing.

I don’t need to be ashamed that I dropped out of high school because I was too sick to finish junior year. I don’t need to be ashamed that it took me 10 years to cobble together a Bachelor’s degree from community college courses, equivalency exams, and competency based online classes. I don’t need to be ashamed that I’ve been to the ER five times in the past four months and I’m dictating this paragraph with Voice Control on my phone because I’m too dizzy to sit up and don’t have enough fine motor control to type right now.

I’m proud of the skills, insights, and knowledge I’ve gained through navigating the world as a disabled person. I’m proud that I figured out ways to take care of myself when no one believed I was sick and I couldn’t get medical care. I’m proud that I’m still alive and happy about being alive. I’m proud that despite everything, I still love this world and the people in it.

The first two principles in the Seven Principles of Unitarian Universalism are my favorite principles. The inherent worth and dignity of every person. Justice, equity, and compassion in human relations.

I have complicated feelings about justice, equity, and compassion in the context of disability. Most disabled people have a collection of bad experiences with well-meaning able-bodied people who were genuinely trying to be compassionate and kind, but had little to no understanding of disability. Able-bodied people who assumed that they knew what we needed, who were confident that they understood our conditions when they only understood stereotypes and misconceptions, who trampled over our agency in the name of “helping” and then expected us to be grateful for it. 

In terms of disability, compassion is often seen as a one-way street. We must remember to be compassionate toward the disabled people! We must remember that disabled people deserve respect because disabled people are just like us! We must make sure that we are just and equitable and compassionate! 

But who decides what is just and equitable and compassionate?

There’s a motto in disability activism, “Nothing about us without us.” It’s the idea that decisions affecting disabled people need to be made with the input of disabled people. This isn’t just about political policy; it’s also about daily life, about the way able bodied people interact with disabled people on a daily basis. The level of awareness and knowledge about disability is shockingly low compared to other social justice issues. 

Many people are not familiar with basic disability etiquette.

• Don’t touch someone’s mobility device without permission.

• If someone is blind or has low vision, don’t grab their arm and try to guide them without permission.

• If someone is deaf or hard of hearing and using an interpreter, look at them and speak to them, not the interpreter.

• If someone has difficulty speaking, don’t talk over them, finish their sentences for them, or say “never mind” and walk away while they are trying to communicate with you. 

I worry when organizations put a lot of focus on justice, equity, and compassion toward disabled people when the inherent worth and dignity of disabled people isn’t well established yet. Patronizing philanthropy that doesn’t respect our voices or desires doesn’t advance equity.

I believe in the inherent worth and dignity of disabled people. I believe in the inherent worth and dignity of disabled people who need intensive full-time care with activities of daily living, who are considered “disruptive” or “unable to function in society,” who can’t work, who can’t access healthcare, who are forced to rely on support from abusive caregivers because they have no other choice. I believe in the inherent worth and dignity of disabled people who work 60 hours a week, who don’t “look disabled,” who can’t get the services and supports they need because they make too much money, or not enough money, who are not sick enough or too sick, who have too much money in savings, or fall in some other bureaucratic gray area. 

I believe in the inherent worth and dignity of disabled people who are friendly and optimistic, who love having deep, difficult conversations about ableism and accessibility, who make it their life’s work to change societal attitudes about disability. I also believe in the inherent worth and dignity of disabled people who are rude, angry, and cynical, who isolate themselves, who are too traumatized to ask for help, who don’t have the emotional energy to explain things anymore, who don’t have enough goodwill left to say “thank you” or “I’m sorry.”

Referencing Rev. Dr. Rebecca Ann Parker’s reflection on the first principle — I believe that all disabled people have the gifts of being human. I believe that all disabled people can offer love, work for justice, heal injury, and create pleasure for ourselves and others. Even if it looks different from the norm. Even if the people around us can’t comprehend it. 

This might sound silly, but I used to worry a lot about saving the world. I agonized over it. I thought, “If I can’t even fix myself, save myself, what could I possibly do for the rest of the world?” Disability Pride and disability justice helped shift my perspective. I’m having the worst health crisis of my life right now, but I’m also more confident than I’ve ever been. Maybe saving oneself is saving the world, in a way.