Tolerate This: Let’s Get Real about Empathy for People with Disabilities

Hello, readers,

Yes, I’m back, for three days in a row. I must subconsciously be making up for my long November “winter’s nap.” Today’s topic? Not the empathy OF people with disabilities; we’ve covered that. And just for a refresher: empathy and disability are not, nor will they ever be, mutually exclusive. (Yes, some people with disabilities can be real jerks. But so can some black people, Hispanic people, Asian people, Jewish people, homosexual people…you get it, already). No, today’s topic is the empathy of the world without disabilities toward people who have them. And no, this is not a “temporarily able-bodied people are jerks” soapbox. Sorry to disappoint if you were hoping for one.

I got the idea for this post from a letter to Dear Prudence in Tuesday’s live chat. The letter writer was the mom of a first-grader named Penny. Apparently, Penny’s class has a tradition of going to “visit” the “special” class at her school once a week, before their snacktime. During this particular visit session, Penny mentioned to her teacher that she was hungry, and asked when the students would return to their classroom. She also told a six-year-old “special” student that he shouldn’t wipe his nose on his sleeve. For this, Penny was called “intolerant” and forced to apologize in front of the special education class and her own class. Her parents were called about this, also. Penny was humiliated.

I love Prudie’s advice to Penny’s mom, so I’ll sum it up here as my reaction to what actually happened. One, this little girl was hungry. That is a basic human feeling, and at age six, she’s not yet old enough to keep that to herself, nor should she have to. “Ms. Smith, I’m hungry” is a statement of fact, not “intolerance” toward another person or group. Penny obviously meant her question as, “When can I have a snack,” not, “How much longer do we have to be here.” Two, telling a same-age classmate not to wipe his nose on his sleeve is natural; it is, to quote Prudie, “something six-year-olds say.” And why shouldn’t they? They’re at the age where “good manners” get drilled into you pretty regularly, and they get taught, among other things, that you should wipe your nose on a hankie or a Kleenex. The other child’s disability had nothing to do with that observation.

And furthermore, what is the deal with this child being forced to apologize for being “intolerant”–a word she may not know the meaning of yet–to two classes? This teacher had no business doing what she did, and I say she owes an apology to Penny and her parents. In fact, as Prudence hinted, this teacher has failed miserably; if you’re going to teach first grade, you need an intellectual understanding, and a far more than basic empathy, for how first-graders act and react. What is that adult doing in that classroom?

But here’s where we get to the meat of the post. Because this letter was part of a live chat, readers were allowed to comment on Prudie’s advice and the letters she got. One reader responded to the “intolerance” letter this way (paraphrase): “I can’t believe this teacher’s idea of teaching empathy is to send students to gawk at special ed kids as if they were zoo animals.” And I thought, how true is that? You don’t get anymore honest. And I agree: what is with that? That doesn’t teach empathy–that just drives home the idea that there’s a line between “us” and “them,” and that kids with disabilities are strange and abnormal. At best, it teaches pity: “Poor little Johnny–I’m glad that’s not me.”

So, the question becomes: how does one teach and show empathy for people with disabilities? I can tell you, the public school system–and society at large–can do a lot better than it’s doing. In response to this question, I found a few gems.

Back in 2002, Jason van Steenburgh wrote an enlightening article about a program introduced by Alicia Connill, founder of the Connill Institute for Chronic Illness. The basic idea of the program is for physicians to truly experience what it is like to have disabilities, while paired with a volunteer who acts as their “caregiver,” thus giving a realistic portrayal of the “daily frustrations” of having a disability. For example, van Steenburgh opens his article with, “Imagine being strapped in a wheelchair…your legs slathered with BenGay…you can’t see much because you’re wearing dark wraparound glasses, and you have to navigate around a trash can thoughtlessly placed on the ramp you need to use.” That person has just experienced the disabilities that can come with late-stage diabetes.

Of course, the accusation that can come with a program like Connill’s is “That’s torture.” Well, having a disability can be torture, pal. And as Alicia Connill herself explained to van Steenburgh, “We’re not looking to torture anyone…we don’t want to tell people ‘imagine you’re in pain.’ We want a little discomfort to creep in to make the experience more realistic.” The other goal is to teach potential caregivers and physicians to interact with people who have disabilities using true empathy, and how to turn what they’ve learned from the program into real action, because “a good attitude is not enough.” You bet it’s not. I know plenty of temporarily able-bodied people with great attitudes who still don’t “get it.”

Van Steenburgh gives several tips on how to empathize with people who have disabilities in his article, but they’re not new. In fact, many are very basic. I’ll list some now and add in some, based on my own experience and that of others.

  • Talk to a person in a wheelchair at his or her eye level. Just as a person who can walk doesn’t like someone towering over them, people who use wheelchairs don’t like it, either. I think this is particularly true because in my opinion, towering over that person can subconsciously perpetuate the idea, “I have the power here, not you.”
  • Don’t lean on or over a person’s wheelchair. That’s the equivalent of hanging on a person.
  • Oh, this is a biggie: Talk to the PERSON, not their caregiver. If there was ever anything that says, “I think you’re incompetent,” it’s talking to the parent, the relative, or anybody but the person with a disability, as if that person is not there. Granted, this may take practice, especially if you’re not sure what cognitive level that person functions at. But still, talk directly to the person. And, for heaven’s sake, if you are someone who needs information from a person with a disability, like a doctor, ASK FIRST before giving the caregiver a ton of information you didn’t give the person to begin with. (Note: there is somewhat of an exception if the person with a disability is a kid, because the doctor needs the parent or guardian’s consent, not that of the kid. But that kid should still know and understand everything you’re doing or planning, as much as is feasible).
  • When talking to a person who is Deaf, don’t turn away or put your hand over your mouth. They may be trying to read your lips.
  • To go along with that: ask how the person who’s Deaf prefers to communicate. Just because you’re Deaf does not automatically mean you use ASL.
  • “Deaf etiquette” will advise that you signal when you are going to leave a room. This is important because the person may not realize you’ve left and wonder where you’ve gone.
  • There’s a similar bit of etiquette for people who are blind; it’s considered common courtesy to say “hello” or “goodbye” when entering or leaving, or something that indicates your whereabouts.
  • This is out of my own experience as a person with a physical disability, and also directed toward others with physical disabilities: for pity’s sake, do NOT make disability a bigger deal than it has to be because of physical layout. In other words, if you’re a professional like a business owner, make sure your place of business is accessible! This goes for doctors and other professionals, too. Now, I realize this can be difficult for individual homes if your family doesn’t have a person with a disability in it. But there are things you can still do. For example, if you have a huge piece of furniture in the middle of a room your guest will be frequenting, and you know they’ll have trouble navigating it, then move the furniture. If your stairs don’t have railings, offer an arm or other assistance. If your doors are too narrow for a wheelchair, find an entrance your guest can use–or agree to meet at an accessible location. You get the idea.
  • Please, please, PLEASE: Don’t offer help unless you’re asked for it! Trust a person who knows–it’s not always insulting in the classic sense, but there are few things quite as annoying (though most of us try to keep that to ourselves). I recognize most of these faux pas are well-meant, but some are just plain rude. For example, going up to a person who’s blind in a crosswalk, grabbing his or her arm, and pulling him or her into the street.
  • Respond only to the disability you see. In other words, just because a person has Down’s Syndrome YOU…DON’T…HAVE…TO…TALK…LIKE…THIS or limit yourself to monosyllables. (Note: if you can’t see the disability, but know or think there is one, see below).
  • If you know, or think, a person has a disability, but you can’t see it, tactfully ask about it. Good openers are, “May I help you?” or, “May I ask you a question about that?” Most of us, myself included, are happy to answer your questions, unless:
  • Recognize what constitutes a rude question. There are exceptions to this–for example, a little kid is gonna say what pops into his or her head, and most of us understand this. And if you can’t see the disability, or it’s a mild form, you may have a question we think is silly, but that we’ll go ahead and answer. For example, I once had a friend ask, in all earnestness, if I could color, because she knew my hands aren’t great at fine-motor stuff. Sure, the question was silly, but there was no way for her to know. (And yes, I can color; I used to be quite good). In contrast, a rude question falls along these lines:

-You see a person with a mild disability, who can walk, talk, and interact just fine, and you pop off with, “Can you feed yourself?”

-You ask a person with an intellectual disability a question like, “Learn how to tie your own shoes yet?” or assume their greatest love in life is Barney the dinosaur.

-You dumb down your speech (see above)

-You make purposely exaggerated lip movements in front of someone who is Deaf or talk with your mouth full

-You ask someone with autism (or worse, their caregiver) “Does she like, do anything weird?”

I can bet you guys have heard all kinds of other rude questions, and I’ll give an invitation right now: the comment floor is open to share your favorites (or least favorites, depending on how you look at it).

So, let’s get back to teaching empathy, especially to children. A lot of it is probably going to come from teaching what I’ve outlined, on an age-appropriate level. But it’s also going to come from the teachers and other adults themselves. In other words, how you interact around people with disabilities, is how your kids will react. You act like they’re abnormal or incompetent, or act smarmy and nicey-nice? So will your kids. You make a big deal out of it, like Penny’s teacher did–as if kids with disabilities are zoo animals? Those kids will learn disabilities are bad and undesirable.

Also, a word about “tolerance.” “Tolerance” won’t cut it, folks. Showing a first-grader a puppet in a wheelchair does not cut it. Reading books with moralistic plots doesn’t, either. Children need the opportunity to interact naturally with kids who have disabilities, to learn about them and become their real friends. I mean, how would you like it if your child’s only exposure to black skin, or Jewish heritage, was a puppet, a video, or some other simulation? You’d be a little upset, right? So why aren’t we questioning how disability is presented? We’re not–we’re just teaching the next generation to “tolerate” it. As in, do what we ourselves have done–grit our teeth and put up with it, and mumble and grumble behind people’s backs. Never mind that the same people we complain about are capable, smart, downright cool people.

And I for one don’t intend to tolerate it anymore.

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