I wanted to share a bit about my experience as a whole as a person living with a congenital disability in America. I also think it’s important to acknowledge the progress we’ve made and where we still have left to go. Shortly before the vote on the bill, a demonstration was held outside the Capitol where activists left their mobility devices behind and began to crawl up the 83 stairs towards the front entrance. Fittingly, this event is now known as the “Capitol Crawl”. If you’ve never heard of it, I hadn’t either until I became more engaged in disability activism. Most history books never mention this critical preceding event to the ADA passing. It has been said in the years since that the crawl “inconvenienced” several lawmakers on their way to work that day, which influenced their decision to vote yes. If you want change, you have to be willing to get a little dirty.

The very first entry from my baby book is from the day I was born. The doctor who delivered me broke my left arm in the process. The first few years of my life were filled with surgeries, doctor appointments, physical therapy, occupational therapy, etc. just to get my body in a usable condition to live a somewhat “normal” life. I’ve never gotten a tattoo before but I feel, in a way, that I already have plenty. If you look my body up and down, you’ll see plenty of scars all over. Most of them are from the aforementioned surgeries and a few are from straight clumsiness if I’m being honest. I used to be embarrassed by them when someone would ask but each one represents a critical piece of my story. If someone asked me what living life with a disability means to me, I think I’d be compelled to say everything. From the very first day to today, I’ve never lived a single day knowing anything else.

The ADA was signed into law 8 months before I was born and, frankly, I don’t want to imagine what my life would look like without it. It has allowed me to accomplish things that I would never have been able to otherwise. I was never forced to go to a different school due to my entirely physical disability and I was able to commute downtown almost every weekday for nearly three years utilizing the public transit that was now mandated by law to comply and be accessible to everyone.

With all of this being said, we have to do better. There’s no other way I can put it. The ADA was a great first step but there are so many more problems which need to be addressed. If there’s anything I’ve learned as a working-class citizen of this country, it’s that you need allies to make any sort of change happen. Able-bodied people need to take the initiative as well and help make systemic ableism a thing of the past.

I want to lay out a quick hypothetical scenario. Let’s say you’re going out with your friends to a bar one night and you notice the bar only has steps to get inside. Everyone you’re with is able-bodied so what does it matter? Well what if the same bar said they didn’t serve POC or members of the LGBTQ community? I’d like to think most people would be outraged and leave, right? Would you do the same thing if you went to any business that wasn’t accessible? It’s essentially saying the exact same thing but in a slightly different way. Admittedly, I was guilty of this too but I realized I needed to change that. Change will only come when inaccessible business’ bottom lines begin to suffer.

Public building access is very much still a problem but it’s nothing in comparison to the accessible housing shortage that’s coming in the next 20-30 years. The thing that frustrates me the most about the lack of accessible housing is that I can be riding down the street of a brand new subdivision and every single house I see has steps to get inside. Where does it say anywhere that a house has to have steps to get inside? It doesn’t say it anywhere. It’s just a choice we make, usually without thinking about it. These aren’t homes that were built in the 70s or 80s either. This is today, right now, in the 21st century. There are no laws mandating that a percentage of new homes need to be designed with universal access in mind. I’ll go back to the bar scenario for a second. Would you be ok with living in that neighborhood if the home developer said another group couldn’t live there?

When I was much younger, I used to watch the show “Extreme Makeover: Home Edition” because I enjoyed seeing what they would do to the homes for people who looked like me. When I look at it through a different lens now though, why were all of those families on the show in the first place? Some were born with a disability and others became disabled later on in their lives but they all had one thing in common: They couldn’t afford the modifications necessary to live in their own home. Rather than addressing the roots of this problem, we portray people with disabilities as the objects of pity by just giving them a house or an accessible vehicle or a new wheelchair and then posting it all over social media so able-bodied people can ignore the problem more easily. We don’t want to be the recipients of charity. We want a system that actually functions as it should and isn’t designed by people it doesn’t personally affect.

The point I want people to understand who don’t deal with this on a daily basis is that we, as a society, have an ability bias that needs to be addressed. These policies, as they currently stand, are inherently flawed and automatically assume that we will be a burden to the state. They reinforce the stereotype that we don’t want to be a productive member of society when, in fact, the complete opposite is the truth. The whole point of the ADA was to break down physical barriers so that we could actively participate in the workforce by obtaining gainful employment and being able to commute there and back safely. The next step is to pass follow-up legislation, requiring healthcare insurers to cover community-based, at-home care so we can actually live our lives without the tremendous financial burden associated with needing daily personal care. We have to confront this problem head-on, which is why able-bodied people need to join this fight and vote for politicians who will too.

I had one night in college when I personally dealt with intolerance. It was a Friday or Saturday night around midnight so the details are a bit fuzzy but I remember this part of that night crystal clear. As my aide that night and I passed an apartment complex, a party was happening on one of the upper floor balconies. A person on that balcony felt it necessary, completely unprovoked, to yell down, “Hey cripple, cripple, cripple” as we walked/rolled by. This was hardly the first time something like this has happened but after twenty something years of snide comments and people staring without realizing it, you grow “immune” to it, as much as possible. People think they’re being quiet enough, sneaky enough, think you won’t understand them, or they’re simply just uneducated.

I usually choose not to respond to a comment like this but instead file it away to use later. These moments, in total honesty, will make you feel small and even subhuman but every insult, every slight, and every time my rights have been violated have always served as my personal motivation to prove each and every single one of those people wrong. The look on someone’s face when they realize I can walk or their speechless expression when I do anything that doesn’t quite fit the assumption of what they think I should be able to do is what gets me out of bed in the morning. This person made sure to project loudly enough for me to hear, which meant my aide heard it too. I know for a fact this particular aide had a mean left hook and she looked ready to go up there and knock them out. I actually had to hold her back but it showed me just how important it is to have people willing to fight for you, both physically and otherwise.

No other law has affected my life in the same way the ADA has. My life is a product of the efforts of those who came before me. Their sacrifices, along with some great timing, made this law my birthright rather than just a dream. Every time I use an accessible parking spot, cross the street using a curb cut, or am able to get an accessible seat at a sporting event it’s because of those who decided our rights were worth fighting for. We have come so far, but this fight cannot stop until every barrier is removed, every bias and assumption is defeated, and every person gets their chance to live their own life independently regardless of ability or disability.

Be an anti-ableism ally.