Living in a society that does not truly welcome you can be disheartening. I certainly don’t except everything I talk about here to change overnight but I do hope there can be more awareness at how our actions or inactions can affect those around us. After becoming paralyzed, I knew the landscape of my life would be changed forever. Learning to maneuver physically in an able-centric world has obviously been but achievable. Although difficult, this was to be expected. What really surprised and frustrated me was how my physical disability isolated me socially, how I am regarded or disregarded when I am out in the world would affect me on a much more fundamental, emotional level. Of course, it’s hard for others to imagine each and every way a person can come to feel isolated by a single act on their part and I understand that not all of the ways I am treated are purposeful or done with knowledge or malice. These observations are about some of the ways people’s awareness can be raised to comprehend what living with a disability is like from a first-hand perspective.
The lack of independence and spontaneous transportation for PLD creates the phenomenon of forced intimacy. We are forced to reach out to our community so we are not isolated but reaching out is not always easy. It changes the dynamic of your relationships with your family and friends. It forces you to reveal things about yourself that you don’t really feel comfortable sharing and turns the dynamic of that relationship to one of sympathy and dependence, rather than helping and assisting. Let’s look at some of the ways this manifests.
Transportation, either public or private, is important for everyone to have access to so they can go to work or socialize. For the most part, transportation is ability centric. Let’s consider public transportation as private transportation tends not only to be cost-prohibitive but, when a specialized vehicle is needed, you can’t just hail any old taxi going down the street. In larger urban areas like New York City, if you are able bodied, you have access to any train or bus available and can go anywhere you need to at almost any time. But what happens when you need an elevator to get on a train? Instead of there being one at every station, you only have access at select stations and those may not be anywhere close to where you need to end up. If you then need to use a bus, many of which are wheelchair accessible but often overcrowded, you had better hope there is space on it and those occupying the front section are willing, without resentment, to give up their seats.
When I lived in the Bay Area, The BART, while definitely one of the more accessible public transportation systems, even so there is a lot of room for improvement. Oftentimes I would try to enter or exit a train platform only to find the out of order sign on the station’s elevator. With no prior notice at any point of my trip. I would then be forced to get off the train, find out the lift is broken, get back on, ride to the next station, get off, and ride back in the opposite direction to use the elevator on the other side of the original station where I intended to disembark in the first place. Suddenly, your trip became twice as long, and ten times as frustrating, as the commute of an able bodied person.
Then there is the issue of sidewalks. Some cities do not have proper sidewalks that everyone (able or not) can use to travel safely to their destination. If sidewalks do exist, there may not be curb cuts or, if there are, they are extremely damaged and impossible to use as intended. At times I must roll in the street and use the bike lanes (if they are around) to get up the street because aside from there not being any curb cuts, I cannot use the sidewalks themselves at all if they are in great disrepair. I am unable to share sidewalks with pedestrians and am sometimes in the way of bicyclists or unsafe near traffic. This creates a sense of both being in the way and not belonging to either world.
A lack of space is another way PLD are isolated. It’s been a trend over the past 2 decades for restaurants or performance spaces to open that are often too small for a wheelchair. In these places, PLD are forced to ask complete strangers to make room so you can get to your table. Sometimes your chair is so big that you are invading their space, forcing the dynamic of social interaction into one in which PLD feel like they have to apologize for their presence and the able bodied feel inconvenienced for having to accommodate them. The grocery store is another environment where PLD are forced to have to ask complete strangers for assistance to reach a product, taste a sample, or even just get through an aisle that is not wide enough. (The original Berkely Bowl in Berkeley, CA and Greenlife in Asheville, NC are two incredibly inaccessible examples). Navigating an aisle filled with able bodied people can be quite a task in and of itself not to mention the social skills needed to ask people who are not paying attention to you to move so you can get what you want.
My last observation is focused on simple awareness and mindfulness. I find that in most cases, able bodied people unintentionally cause feelings of social isolation for PLD without even realizing they are doing it. I remember one of the first times friends isolated me without any realization. It was in a park for someone’s birthday. Everybody that was celebrating was sitting on a little pavilion that had a step. Being in a wheelchair, I couldn’t access where everybody was so I sat alone, isolated from the party. Nothing is more depressing than sitting by yourself as you watch all your friends gather in a space that is completely inaccessible to you, enjoying each other’s company without even a second of awareness that the only thing that prevented you from socializing with them was simply a step. It’s sometimes the littlest things that can get in our way and make us feel disconnected from others.
What PLD must endure everyday socially is so detrimental to their state mind. We as a society must recognize, accept, and acknowledge how we ignore, forget, or are completely unaware about how we could be isolating PLD. Then we will be on our way to living in a place that is really inclusive.