Even though the CDC reports that 61 million adults in the US live with a disability, a lot of people don't fully understand what most disabled people experience on a daily basis.
And because of this lack of awareness, disabled people are sometimes harassed or discriminated against by some nondisabled people who may assume the worst of them if they see them doing something that doesn't fall into the "stereotype" of being disabled.
For instance, Annie Segarra, who is an ambulatory wheelchair user (i.e. a person who has a limited ability to walk) with Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS), recently revealed on Instagram that because of harassment, they often have to contemplate if they should "fake being abled" when they go out so they're not targeted by others who don't understand their disabilities.
In the video, Annie explained that a lot of people don't know that ambulatory wheelchair users (AWUs) exist. "Whenever I get up from my wheelchair in public, people tend to be shocked or angry and accuse me of faking my disability," she said. "But what most people don't know is that I actually struggled with the decision whether I should fake being abled."
"One example of when this happens is when I need to pick up a takeout order," she said. "So I essentially have three options: I can use my wheelchair to get inside and pick up my order, but I will have to reveal myself as an ambulatory wheelchair user because when I put my wheelchair away in the car, I will have to walk around to the driver seat and then people will see me and that puts me at risk of harassment."
Annie continued in another video by saying the third option is a scary idea but that they "think about it all the time." "And if I do [it], I will get tachycardia. I will raise my heartbeat over 100 beats per minute. And that’s painful," she said. "So no matter which one I choose, it’s going to be hard."
After the two videos were posted, an Instagram user who related to what Annie had to say commented on their video: "This is extremely relatable and honestly, if it’s a quick trip, I also have to factor in the pain taking my chair in and out of the car." And Annie agreed and related with this as well.
In a third video, they replied to the user by saying, "I know for me, things like pumping gas; I just won’t use an aid. I’ll probably just lean on the car for support. And then maybe continue to pace or shift my weight from leg to leg."
"But I put myself through all those things in lieu of the process of taking my wheelchair out of the car," she said. "If I think it’s going to take a very quick amount of time, I’m going to think about which one will give more trouble for my body: taking the wheelchair in or out, or trying to fake it.”
After seeing Annie's videos on Instagram, I wanted to connect with them to learn more — so I reached out to Annie directly.
They believe the reason why these harassments happen in the first place is that ambulatory wheelchair users have been historically excluded and misrepresented in media.
"If you think of movies and television alone, there’s a huge 'faking disability' trope, more often than not in media," she said. "If you see a wheelchair user stand up from their wheelchair, it's to create this dramatic moment where they reveal that the wheelchair user has been faking their need for a wheelchair the whole time."
"In contrast, we almost never see a wheelchair user stand up from their wheelchair and it be a casual routine and an accepted part of their character."
And, unfortunately, Annie has experienced this kind of prejudiced harassment head-on from people who believe they were faking their disability. "I’ve been stared at, judged, followed, approached, and confronted," she said. "When I first started needing a wheelchair to get around, a woman saw me get out of my car, take my wheelchair out the trunk of my car, and get in it to enter a store. She [then] followed me in to tell me, 'You know, if you lost some weight, you probably wouldn’t need that chair.' I’m still in disbelief about it, like WHYY would you do that??”
The thing is, Annie believes that it's not just one's ignorance that can be harmful to a disabled person, but also the violence that sometimes follows it.
"There’s a huge difference between having a humble response to not understanding something," she said.
"For example, 'Hmm, I didn’t know that was a thing, I should learn more about it before drawing any conclusions' versus using your misunderstanding to create a prejudice and acting in anger due to that prejudice: 'I assume anyone who doesn’t present their disability in a way I am familiar with or feel comfortable with is actually a bad person who is faking their disability for attention or to take resources from those who actually need it.'"
"This prejudice inspires a lot of violence, whether it be verbal or physical — not just the direct confrontations, but also people who will call the police or report people to disability services with accusations of faking their disability."