Q. As a person with a hidden disability, I am constantly struggling with the feeling of being unfairly judged or even attacked by people who do not understand my needs or issues. I’m an incomplete quad, able to walk but in frequent need of rest. I was recently accosted by a stranger while I was sitting in a seat reserved for people with disabilities at the airport. With no other seats available, she wanted me to move for an elderly woman using a cane. I don’t think I should have to defend my disability to anyone. I didn’t want to start a conflict so I gave up the seat, but it felt wrong. What should I have done?
A. The lack of understanding you describe and the rudeness you were subjected to is a common occurrence for many of us whose disabilities lie outside others’ uninformed viewpoints. Even those of us with disabilities sometimes make the mistake of assuming that someone with a hidden disability is not “one of us.” We all fall victim, no matter our specific disability, to the human tendency to categorize and classify each other. But with a hidden disability, you are especially vulnerable to widespread ignorance as well as being judged by others based on skin-deep assumptions. The lack of understanding derives from a pervasive cultural ignorance that is rooted deeply in people’s passive acceptance of stereotypes, universal fears and commonly held misconceptions.
In the scenario you describe, you characterize your feelings in a way that captures what many of us have experienced: “I don’t think I should have to defend my disability to anyone.” I completely understand your reaction. Many of us would feel offended when challenged in the way you were. Others may have decided in advance, after a number of similar confrontations, to adopt an unwritten “policy” of confidentiality — my disability is no one’s business but mine — and choose not to respond at all. You’re well within your rights to do this. However, the problem with dismissing or ignoring the person confronting you is that it may lead to an escalation that can upset not only you but those within earshot as well.
You can take another tack and seize the opportunity to inform or even educate. Your choice may depend on the way you feel at the moment. If you are fatigued or not feeling well, you may choose to use as few words as possible: “I do have a disability and I’m resting. I need this seat.” If you feel up to it, you can go further: “I have a spinal cord injury, it’s tiring to walk, and after coming this far, I need to rest before moving on.” If you’re in an expansive mood, you can politely invite the person confronting you to engage in conversation: “l understand your reaction to seeing me in this seat, but I have a disability that is not obvious. Would you like to hear about it?” Coupled with a smile, this kind of response might disarm your confronter and lead to a lesson learned.
Whatever words you choose, the tone of your response and your body language are just as important. It’s best to try to stay calm and in control, and damp down your anger before responding. The last thing you want is to stoke someone else’s hot coals into a raging fire.
No doubt there are many more options available to you. But what about the elderly woman? If you are able, you can seek a solution for both of you. “I have a disability and need to rest now, but I’d be happy to surrender the seat in five or ten minutes if no other seat opens up.” Or you could suggest directly asking another person in the nondisabled seating section if they would mind giving up their seat for the elderly woman. Just suggesting that the elderly woman and her advocate look for nondisabled seating would help. Often all it takes is for one gentleman or lady to instantly assess the situation and voluntarily give up their seat.
So, did you do the right thing in giving up your seat even though you weren’t happy about it? I would say yes, at a cost. Obviously, it still bothers you.
Consider the Underlying Cause and the Situation
The situation you described happens quite often, and it’s helpful to admit that sometimes those of us with disabilities are the ones who get angry and accost someone whom we think is not disabled — or “not disabled enough” — for taking our reserved seating. The same thing happens with disabled parking spaces. How many times have you been faced with a situation when you wanted to confront someone for taking a seat or space you felt they were not entitled to?
Designated seating areas create one of the trickiest situations for determining who gets priority seating, especially when it is within the regular seating area, rather than open spaces for wheelchair users. There are countless types of hidden disabilities, and each one presents different needs. Physical disabilities that are sometimes hidden, like incomplete SCI, remitting multiple sclerosis and mild cerebral palsy are complex enough to hinder appropriate differentiation. When you add in invisible conditions like heart disease, chronic fatigue syndrome, chronic obstructive pulmonary disease and cancer, it can be truly confounding to determine who gets priority. And not all people within each category are affected equally.
Considering situational needs rather than disability type or assumed severity of disability adds another level of ethical complexity. For instance, using disabled parking as an example, many of us have become accustomed to parking in the designated spaces closest to an entrance or event. Then we see a car with no placard in a disabled parking space. Our initial response is usually anger or disgust. But if we wait long enough, it’s possible that we may see an elderly person wearing an oxygen mask approaching the car. She is using a walker and being assisted by her driver. The difficulty of walking and the pallid complexion suggest that the “offender” is literally on her last legs.
Would it be best to object to their parking without a placard or to understand their immediate need?
The principle of situational awareness can be applied to accessible seating as well, whether at a sports event, a concert venue, or an airport boarding area. However, assessing the immediate need of a seated person who does not use a wheelchair may take a friendly conversation — rather than an aggressive interrogation — to understand the extent of that need. In these situations, whenever possible, each of us must consider the best way of dealing with our unique disability in a way that works best for us — but also takes into consideration the real needs of others.