The summer before my junior year of undergraduate school was a difficult one. My health had declined drastically after a series of bloodstream infections, and it was also when I was first prescribed a wheelchair. Between trying to manage my symptoms and the major anxiety I initially had about going out in public with my wheelchair, I rarely left the house. I felt isolated but was too sick to socialize much; still, when I heard that a nearby church was hosting a used book sale I couldn’t resist. Armed with IV fluids and my wheelchair I drove to the next town over where the sale was taking place. It was busy and my face grew hot as I clumsily unloaded my wheelchair, a feat that I had yet to master. I finally got it together and rolled toward the door and I was about five feet away when it opened. The man who had walked through made a move to hold the door, but I was met with the sight of a stairway around the same time that he recognized the issue. I sheepishly asked if he would go find one of the people directing the sale to see where the accessible entrance was. Sitting there on the asphalt I was sweating and it wasn’t just the warm weather.
A few minutes later a woman came out and the look on her face said it all; the half smile, half grimace preluding an awkward conversation. She told me that the church didn’t have an accessible entrance. She asked if I was looking for anything specific, and for half a second I considered trying to go in without my chair. A lump formed in my throat as I said it wasn’t a big deal; that I didn’t have anything particular in mind; that I understood because it was an old building; that I had too many books anyway. My vision was blurred as I rolled back to my car as fast and my shaking arms could take me. Tears streamed down my cheeks in silence as I took my chair apart and shoved it into my passenger seat. It was such a minor thing, but it was soul crushing. A similar event transpired this past summer when I moved to Michigan to start my master’s degree. I was not able to come and tour my apartment before moving in, so I signed a contract sight unseen. It had been nearly impossible to find housing that was both affordable and accessible; in fact, my apartment isn’t technically “accessible”, at least by ADA standards. We got the property managers to take some measurements and I was hoping I could manage, but to be honest we weren’t even sure if my wheelchair would fit though the front door! Thankfully it did, and while it’s not perfect, I’m able to make it work.
The thing these stories have in common is the anxiety associated with accessibility issues. Regardless of the type of disability a person has, it can be a nightmare to constantly worry about whether you will be able to get into a building, hear a movie, read a menu or access things able-bodied people might take for granted. Most people never have to consider whether they will be able to do what they need or want to do when they go to stores, movie theaters, restaurants or anywhere else. Ideally, this wouldn’t be a problem, but our world is far from being accessible to all. As a result, dealing with these issues is an inherent part of living with a disability. Ask any disabled person you know and I can almost guarantee they will have a story or two. They may laugh it off, but it can be frustrating, annoying and even embarrassing.
Another one that comes to mind happened soon after my move to Michigan. I asked if a restaurant was wheelchair accessible before RSVPing to an event and received a reply that there were “only two stairs to get inside”. The email conversation after that was pretty awkward. Yes, on a good day I might be able to walk up two steps and have someone carry my chair up but here’s the thing – with a chronic illness or disability, you can’t plan on having a good day, so you have to prepare as though it’s going to be a bad one. It turned out that the restaurant did have an alternative entrance, but it was largely inaccessible beyond that. The only elevator in the building was in the kitchen, so I had to wind through kitchen equipment and staff with my wheelchair and service dog. The irritated looks I received, the shame I felt for asking for help and the anxiety associated with the whole experience I had at that restaurant are enough for me to say I won’t be going back any time soon.
The important thing to take away from that story is that you don’t want to make people feel like a burden because of their accessibility needs. Feeling like an inconvenience or annoyance is an everyday struggle for me and it is one shared by many others, especially if their disability is not an obvious one. When you don’t “look disabled” and request an accommodation you can be questioned, mocked, shamed or even refused. This adds to the anxiety and can leave you in a situation where you just stop asking for help and suffer as a result of it. So how do we tackle this problem? A great deal of the change needed to reduce (and hopefully someday eliminate) accessibility issues falls at the feet of businesses and local governments.
Old buildings and infrastructure provide the greater challenge, especially those that are historic. You will be hard-pressed to find 19th century buildings that are wheelchair accessible as is, and even with retrofitting there are often limitations on how accessible they can be made. A challenge is that many people feel that things like ramps, elevators, widened doorways, braille signs, and other building modifications take away from the aesthetics of older buildings. The Americans with Disabilities Act (ADA) mandated that as of 1992, new construction should be accessible, and for the most part it is. It’s the backtracking to improve access in these older spaces that has proved a challenge, and it is often glaringly obvious when bare-bones measures of accessibility have been put into place.
For new buildings and infrastructure, accessible design should be the only design considered. Even though that 1992 mandate technically requires new construction being accessible, it is surprising how wide the gap can be between what is legally considered accessible and what is actually accessible. I have a few future posts planned on this in areas that are notorious for accessibility gaps, particularly bathrooms and like I stated earlier, restaurants. ADA guidelines are good for the basics, but they are just that – guidelines. So if you are designing buildings, opening a new business, or planning community infrastructure, true accessibility needs to go beyond standard guidelines. You have to actually have experience navigating the world as a person in a wheelchair, a visually impaired person, a deaf person, or someone with any other type of disability to know whether a space is going to be accessible to them. So if you don’t have that experience, ask. Get feedback from the people that walk (and roll) in the shoes of disability every day of their lives.
The other important mechanism in mitigation of access anxiety is being proactive about accessibility in daily interactions. This means if you are planning a public event, assure that you venue and content are accessible. As I have stated in other posts, what is and is not accessible to someone varies a lot from person to person, but having a baseline level of accessibility is critical. Make sure someone with a mobility aid can navigate safely and confidently, make sure that video content is captioned, and a sign language interpreter or assistive listening device is available when needed. If you are unsure if these services will be needed, this can be determined by simply including an area in an RSVP that allows a person with a disability to make a request. Even if you think it will be obvious, it can be especially nice to state in an invitation or notice of an event what accessibility measures have been taken. On a smaller scale, if you are going somewhere with someone who has a disability, check that the locations you choose are accessible ahead of time. It is a simple act that can make all the difference and it can take some of the fear and challenges out of the experience of living with a disability.