You’d think, wouldn’t you, that the answer to this question would be a resounding “no.” Unfortunately, some people, even in nations that profess to be enlightened, like America, continue to perpetuate the idea that people with disabilities (hereafter known in the blog as PWDs to save some keystrokes) are the most selfish people in the world.
Some people, out of ignorance and often pure cruelty, will say this to the PWD’s face. Recall, for example, Mary Johnson’s book Make Them Go Away, which contains the story of Ellen Nuzzi–labeled selfish because she dared to attempt to ride a public bus, and request modifications so she could do so. And the ominous question continues to linger even after more than a decade since that book’s publication. Many people wonder aloud, often because they do not know better, if it is selfish for PWDs to have children because, after all, those children might grow up to have the same disabilities as their parents. Others wonder if autism naturally leads to selfishness. These are real questions–I found them while Googling “people with disabilities selfish” last night, in search of stories and articles that talk about this myth. Disability Scoop calls it a sub-myth of the “uppity crip” myth.
Nor is this just conjecture. I saw the results of this myth up close and personal during my student teaching experience. I was working at a school that was and is technologically advanced. All the students used Chrome Books, and my “cooperating” teacher often projected videos, images, notes, or other pertinent material on a large screen at the front of the room, using her computer. At first, I thought this was great, because it would lessen the pain in the neck of explaining my inability to handwrite and thus, ask for modifications.
Unfortunately, the opposite was true. The technology came with its own pitfalls, like cords that would get tangled in each other, and everything else, like a mass of snakes, and a screen remote that would blink from one mode to the other too quickly for me to keep up with. Requests to my cooperating teacher for help got, at first, grudging help, then remarks like, “I’m gonna start making you [do this stuff],” and then pointing to which cord went where when I got confused about it. Once, a cord got tangled in my desk chair. Her response? “You can lift it yourself; it’s not heavy.” The chair got knocked over–twice. Her subtext? “You’re refusing to do something I know you can do yourself, and holding me up.”
The examples don’t have to be that blatant, and I hope for the sake of any readers with disabilities that they are not. More often than not, the examples of this myth come from well-meaning people. It might be the therapist telling a child, “You have to learn to tie your shoes so your mom won’t have to do it.” (Now, if that child can tie shoes and is simply refusing, then that needs to be addressed, but I don’t think it’s wise or fair to bring the parent into it, as in, “Look how much they already do–you’re being a burden.”) It could be the church member who, upon seeing a PWD is not participating in a certain activity or ministry, assumes he or she doesn’t want to and says, “You know, life is not about you,” without stopping to think that maybe the reason that person isn’t participating is, he or she can’t or hasn’t received the proper modifications to do so. (More on that in a future post). It could be the teacher or employer who withholds modifications in the name of independence, and shames the PWD for asking for them (as in, “You’re in the adult world now, so…”)
What does this cause? I’m sure you know. What happens, is what always happens when someone is continually exposed to negative feedback. They begin to believe it. Suddenly, the PWD can’t ask for help or modifications without feeling a stab of guilt. He or she feels obligated to apologize to people for taking up their time or infringing on their schedules. As for that person’s wants–why express them? To say you want something is the most selfish thing of all!
In fact, I think there’s a serious double standard when it comes to what “selfish” or “self-absorbed” means for people without disabilities and people who have them. For the temporarily able-bodied population, “selfish” or “self-absorbed” has come to mean, having an arrogant attitude and narrowly focused view of the world around them, with no regard to what anyone else says or does. Pretty fair assessment, because that is the actual definition, dictionary particulars aside. But for PWDs, “selfish” has come to mean, “Asking for legitimately needed help, modifications, or any other needs or wants.” Worse, in the eyes of some, this is wholly defensible. “It’s selfish,” they claim, “for that disabled person to insist we make X activity or place accessible for them; they should just accept what they can’t do. I accept that I can’t organize a closet, don’t I?” (Maybe, but the fact that you’re talking about it actually shows you don’t, and that’s another thing entirely).
Understand that yes, PWDs can be legitimately selfish just like anyone else. I have, you have, and I’m sure if they’re honest, my readers with disabilities would admit to it. However, there is a huge difference between actual selfishness as we have defined it, and accidental self-absorption (such as the individual with Asperger’s Syndrome who talks about his or her core interests without noticing they’re dominating conversations–and in that case, they need natural guidance to overcome this–NOT a behavior plan that says, “Johnny will learn to be considerate of others.” (I just love those un-measurable goals, don’t you)? And there’s also a big difference between those two, and asking for what one legitimately needs to live and thrive in the world around him or her. But if we’re so busy claiming that PWDs expect the world to revolve around them, how can we help them thrive in it?
I say it’s time to stop whining about how selfish PWDs are, and look at how we ourselves act. Then maybe, instead of, “Quit holding me up and wrecking my world,” the attitude can become, “How can we help each other today?”