culture & community

Disability Pride Month and its Importance

by Meghan — August 2, 2020
blurry wheelchair zooming down a corridor, disability pride

You might have missed that July was Disability Pride Month. Time to celebrate differences & highlight the challenges disabled people face every day. ~

I learned something new recently – July is disability pride month!

Perhaps you’re wondering what that means. Here, let me help…

What is Disability Pride?

Disability Pride has been defined as accepting and honoring each person’s uniqueness and seeing it as a natural and beautiful part of human diversity. Disability Pride is an integral part of movement building, and a direct challenge of systemic ableism and stigmatizing definitions of disability.

Why is this needed? I’m going to get to that momentarily, but first I feel I’d be remiss if I didn’t at least mention and thank my mama in this particular blog post.

You see, I was born to a nineteen-year-old girl who’d be the first to tell you she didn’t know the first thing about motherhood, or what would come with raising a disabled child.

She told me once, she thought if she stomped her foot and threw a big enough fit – screaming at the top her lungs – she could make the doctors fix me through sheer force of will. Wanting to fix my inability to walk wasn’t born out of her own ableism at all. It was born out of an unending, and still very present need to spare me the unyielding and persistent ableism the world would throw my way and continues to this day.

Our journey into acceptance that my life would be on wheels rather than my own two feet had its obstacles and hardships. Countless surgeries that failed by varying degrees and innumerable amount of hours of therapies to help me maintain whatever skills I’d gained or tried.

Was it hard? Hell yes! But was it worth it? In the end… I’m gonna go with yes, because learned about my capabilities. I’m one of those “if I can do xyz with a smile on my face I can do anything” people. If I can’t go over a mountain, I go around. If I can’t go around, I blow that fucker up and I try my hardest to be nice while doing it.

My mom taught me that.

She is my loudest and best advocate, I think mostly that’s because she’s done it her whole life and she doesn’t trust anyone else to do it for me. Not even me sometimes. You see, I’m a people pleaser who doesn’t like to make waves. I” hoping to get better at it but in the meantime, my mom has no problem being a tsunami in my place.

One reason I feel the need to thank my mama in this post is because without her, I wouldn’t know that it’s okay to feel pride in myself as someone with a disability.

When others (with an ableist worldview) asked me why I was just accepting I’d never walk, my mom made sure I knew acceptance is okay. Not only is it okay but it’s brave, and it took more strength than the people who questioned me realized.

Who I am, is more than enough. So, thank you mama. Thank you for wanting to spare me pain, thank you for stomping your foot and screaming, and cussing the idiots who think they know something when they sure as hell don’t know shit. Thank you for teaching me acceptance, I know acceptance that I’d never walk is harder for you than it is for me. After all you can’t miss something you never had in first place. And thank you for all the things that you do for me that I didn’t list here. I love you.

Why is disability pride month important?

The short answer is: to combat ableism, and for the disabled community to have equality.              

Ableism (/ˈeɪbəlɪzəm/; also known as ablism,[1] disablism (Brit. English), anapirophobiaanapirism, and disability discrimination) is discrimination and social prejudice against people with disabilities or who are perceived to have disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled.[2] On this basis, people are assigned or denied certain perceived abilities, skills, or character orientations.

Here’s the thing this definition doesn’t mention – systemic ableism.

My parents raised me to believe I could do anything or be anything I want to be, and I am now a smart and capable woman. Thanks to the Education for All Handicapped Children Act of 1975, I can get any degree I want. It would be useless though because, according to US Law, I cannot have more than two grand in assets at any time or I will lose my health insurance. I have Cerebral Palsy which is considered a preexisting condition and private insurance companies refuse to cover it.

Being disabled is expensive. My manual wheelchair alone was close to 4K. My power wheelchair is in the ballpark of 30K and sadly, wheelchairs wear out way faster than cars. Parts randomly pop off or screws fall out of things they really shouldn’t. Eventually they straight up fall apart because medical equipment is a booming business, so they don’t build it to last.

In conclusion, I couldn’t afford to be disabled without Medicaid.

Perhaps you’re thinking “Well, I know so and so and they have a job.” All this means is a) they were not born with their disability, or b) they’re paid well below minimum wage so it doesn’t mess with their Medicaid or other programs.

Did you know that if a disabled person gets married in the United States, United Kingdom, or Canada they can – and likely will – lose their health insurance and/or financial aid. This is what happened when my friend Bailey, whom I interviewed in a previous piece, married her husband Daniel.

Nothing about her disability or financial standing changed. She just got married. They likely looked at her spouse’s income, and decided she no longer qualified.

I really, really, want to fall in love and one day get married I’m a traditionalist. However I really can’t afford to lose Medicaid.

In some states you can’t even just live together as a couple, or call each other husband and wife. Because that’s purporting to be married and is the same as marriage under the law, and is another way you lose benefits. This tells disabled people they are not the same. In my mind it’s also a way to keep us from having kids in case our kids are also disabled.

People like to think we’ve come a long way since the 1970s disability activists sit-ins detailed in Netflix’s Crip Camp, or the Capital Crawl in 1990 as a form of protest to push the Americans with Disabilities Act (ADA) into law, but in my experience we really haven’t.

For example, when I go to Ulta (an American beauty supply megastore), it has to by law have a way for me to enter and exit, that’s it. They do not have to make it easy for me to get around. I have gotten stuck in the narrow aisles before. If there was ever a fire and I was in that store alone, I’d be screwed, all because I wanted my foundation matched or some other inane activity. When I go to Ulta, I can’t go there alone.

By law I can go wherever I choose but that doesn’t mean the buildings have to be accessible. If the building was built before 1990, it does not have to be ADA compliant. The buildings built between 1992-93 before the ADA went into affect on January 26, 1992 have less strict ADA compliance rules depending on if it is a small business or how it is categorized under the ADA.

Places that provide public accommodations put before the ADA have to make changes only when readily achievable, meaning only if it’s an easy fix. You can read more about the laws on this handy law site.

When I go to a building where their idea of accessibility is one parking space and a trash ramp, I immediately understand that they don’t want my business and nothing in the space will accommodate me. They’re doing the bare minimum and that’s ableist as hell.

Federal law makes it so I don’t have enough financial independence to ever make anything of myself by fulfilling the belief that disabled people can’t be productive members of society.

Accessibility issues are better than they used to be but are still in the forefront because of the way the ADA laws are set up. It only furthers the ableist belief that disabled people are lazy shut-ins who behave nothing like normal people.

I won’t even get into my local school system and that shit show. Needless to say my mama advocated for me like no other and it was a whole lot more inclusive and law abiding by the time I graduated.

You’re probably thinking “But I’m not ableist? I would never discriminate someone based on a disability”. However, you might be surprised how often I run into ableist ideas whether it’s embedded in a system, an inaccessible building, or some off hand comment someone makes.

A small sampling of ableism I’ve encountered first hand:

  1. Constant staring
  2. A perfect stranger asking “What’s wrong with you?”
  3. Strangers offering unsolicited medical advice 
  4. People wanting to pray over me
  5. A nurse asking me if I was a ‘crack baby’ (I’m not, this is highly offensive don’t do it) 
  6. Random men asking if everything works ‘down there’ or just straight up asking if I can have sex. (It takes everything in me not to reply with “Yes, just not with you.”)

These crazy things offend disabled people and often they – myself included – are too polite to correct someone. Comments like these are a prevalent form of ableism. If you wouldn’t walk up to an able-bodied stranger and say these things, don’t do it to someone with a disability.

Everyone has obstacles in life but for the disabled there are systemic hardships and societal hardships, in ways that don’t effect someone with a more functional body or brain.

Learning to love the disabled part myself is an ongoing journey, and I want that journey for love, equality, and acceptance to have fewer steps for the younger generations and the newly disabled. I want my niece who has Down syndrome to know that she is enough and to find beauty in her uniqueness.

Lastly, racism, sexism, ageism, and ableism will always exist. I say that because all of those things divide people and when people are divided we are more easily controlled by those in power. If we could find a way to strike down all of the falsehoods and inaccuracies we believe about each other the world would be a better place, a more understanding and generally better world to be living in. It is for that reason and all the others I mentioned that I believe disability pride month is important and something worth discussing. I am a proud disabled woman.

If you would like to view the Americans with Disabilities Rights Act click here.

If you would like to know what it’s like to report an ADA compliance violation read this humorous article by Shane Burcaw.

How hard do you think is it for disabled people to get around in your community? Is there something you can do to change it?

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