My Reignited Passion for Disability Injustice

How my wife's new-found passion supporting the mobility disability community spurred a rebirth of my own advocacy

It took me 25 years to go completely numb. That is to say, it took me 25 years of living with a physical disability to become desensitized to the inaccessibility frustrations of my daily environment. As apathy set in, a staircase preventing me from entering a building no longer shocked and appalled me. The lack of an elevator to travel to my end destination no longer stirred up fury. A missing curb cutout that forced me to drive my wheelchair into the busy street was no longer an outrageous and dangerous burden.

I had learned to simply accept inaccessibility as the “norm.” After all, none of the non-disabled people I encountered seemed very concerned about the matter. In fact, a recent survey conducted by BraunAbility, the nation’s leading manufacturer of wheelchair accessible vehicles, showed that the mobility disability community and their caregivers are two times more likely than the general public to believe there is a lack of inclusion of people with mobility challenges when accommodations are designed.

When I met the woman who would eventually become my wife, Hannah, and welcomed her into the wonderful world of disability culture, I felt my sensitivity to inaccessibility injustices return. Prior to meeting me, Hannah had not had much experience with disability. Her realization of the widespread nature of accessibility barriers provided a perfect window into how little most non-disabled people think about these issues — until it directly affects them in some way.

Upon gaining this awareness, Hannah immediately became passionate about the issue. I’d get text messages from her that read: “Just realized my favorite café has a STEP into the front door! It could easily be a ramp! I’m emailing the owners.”

Or: “It just occurred to me that my dorm building doesn’t have an elevator that goes up to my floor? Isn’t that illegal? I’m reporting it.”

These instances infuriated her, and in many ways, led her towards studying disability and becoming a prominent non-disabled advocate in the disability community a few years later. Not every person who becomes aware of inaccessibility ends up devoting their life’s work to fixing it like Hannah, but it is important to acknowledge the disconnect between the general population and disabled people where accessibility is concerned.

The 2021 survey from BraunAbility looked at exactly that — and the results are worth exploring. Their study found that 61 percent of the general public think people with mobility challenges are accommodated — while only 23 percent of disabled respondents or their caregivers see it that way. Clearly, there is a disconnect.

I’ve seen this basic disconnect play out countless times in my own life. I once found an intimate rooftop restaurant I wanted to take Hannah to for a surprise date night. To ensure the venue was wheelchair accessible, I called ahead and asked the employee who answered the phone. Her response was a cheery “Of course! We have an elevator up to the rooftop.”

Great! The night of the date arrived. We put on our best attire and headed to the restaurant for a fun evening. When we entered the lobby and checked in for our reservation, the hostess wore a confused expression. She put on a whispered voice and asked Hannah, “Will he be able to transfer out of his wheelchair?”“

No. He was told there’s an elevator,” Hannah said.“There is an elevator, but you need to go up about six stairs to access it. Will that be OK?”

It was not OK. We left and found a better place to eat and spent much of our night baffled over how that original employee thought a flight of stairs counted as wheelchair accessible!

Another time, we found ourselves in a tightly packed diner in New York City. Clearly, no attention had been paid to whether a wheelchair could navigate the narrow aisles between tables. We asked for a table and hoped they had one reserved for wheelchair users — one that didn’t require a journey through the cramped dining room. Nope! The host led us towards the back of the restaurant and when my wheelchair became stuck between tables and chairs, he grabbed my handlebars and began violently yanking my chair despite my repeated pleading for him to stop. It was humiliating and wildly inaccessible, but the host saw no issues with the situation.

When I share these stories with non-disabled people, they are often shocked. Issues of accessibility rarely cross the minds of those who don’t experience a mobility disability on a day-to-day basis. And when they do think about these types of issues, their subsequent thoughts are about the success of the Americans with Disabilities Act in making “everything” accessible. Many people never realize that there are still significant and numerable accessibility barriers in our society.

That realization — that there is still much work to be done — can only come about by listening and prioritizing the lived experiences of disabled people. We know the problems because we are the ones affected by them. We know the solutions because our lives depend on them. BraunAbility’s study underscores the importance of listening to disabled voices. They found that 61 percent of the disabled/caregiver group believe people who have mobility challenges have the least representation among minorities in U.S. society (versus 31 percent of the general public). It’s time to start listening.

My wife listened and learned from my experiences with inaccessibility. In turn, she became outraged by the situation and began working alongside the disability community toward productive solutions. In doing so, she reignited my own passion for advocacy. It is a beautiful thing when disabled and non-disabled communities work together to achieve progress.

Shane Burcaw is half of the wildly popular Squirmy & Grubs YouTube channel, which catalogs their day-to-day lives as an interabled couple just living – and sometimes laughing at - their lives together.