Monthly Archives: January 2013

Disability Does Not Mean Dissing: When the Line into Disrespect is Crossed, and What to Do About It

Are you still out there, readers?

I started an intense student teaching gig two weeks ago (high school English) and so have had zip time or energy to write anything but lesson plans. Yet, in addition to being a teacher, I am also a writer, and one of my writing projects is this blog, so I have returned, however briefly. (A warning: please expect blog posts to be sporadic until about spring).

That said, today’s topic: what does “disrespect” mean, and not mean, when it comes to people with disabilities?

I got the idea for this post after a discussion–oh, all right, all right, an argument–with someone over the question of, just because someone is in a position of authority over you, does that give them the right to be snooty, disrespectful, cold (i.e., ignoring you), and so forth? Of course, taken from a Biblical perspective, one might easily say, “Render unto Caesar what is Caesar’s,” and also cite Paul’s writings about slaves and masters, among other writings. And that person would be absolutely correct. The catch is, on the other side of that Biblical coin lies the responsibility of the authority figure to treat those under him or her with respect. Of course, I didn’t think of this at the time–I was far too bothered by the emotional turn of the argument. But now that I’ve had a chance to cool off, I have thought of this. And I have also thought, I’ve been lucky to, most often, have been shown respect in school and at work. But some people with disabilities aren’t so fortunate, and we need to address that.

Now, understand that when I say “disrespect,” I don’t always mean, easily defined meanness. We would hope that the average person with a disability these days would not be faced with, say, a business owner who says, “I don’t allow crips in here” or an employer who says, “I don’t make ‘modifications.'” Of course, this does happen, and I think we all know by now what to do about that–fight back, peacefully, but determinedly. No, generally, disrespect in Disability Land–I love the double “dis” in that phrase–is more subtle. It’s the “expert” doctor or therapist who gets into a snit when a parent or guardian questions a method. It’s the teacher who either ignores your child or teen’s requests for reasonable modifications, or says something like, “Handle this yourself, Giovanni,” hiding behind a cloak of, “I want to make Giovanni more independent” when what he or she really means is, “I don’t want to/shouldn’t have to do my job.” It’s the employer who talks to the adult with a disability in his workplace as if that person is a two-year-old, regardless of actual cognitive ability. It’s the driver who makes a huge deal out of transporting the person with a disability, and then calls that person “selfish” for wanting or needing help.

So, I know what you’re asking: why are we talking about this? I wouldn’t let anybody treat a person with a disability like that on my watch.

Or would you?

Not on purpose–I can understand that. But the problem is, in many cases, the people I’ve singled out as examples are often experts in their fields, or they’ve at least been with the job long enough to know what is “mainstream.” In other words, they are very much the authority, some more so than others. (Doctors, therapists, I’m looking at you). And what tends to happen around authority figures is that people get intimidated, whether or not they should. The assumption made is, “This person, or these people, can never be questioned, and should never be questioned.” What’s even more disturbing is that loved ones, caregivers, what have you, tend to pass this attitude down to the person with a disability (especially if it’s a child), with a punitive undertone. As in, “Never argue with or question a teacher, therapist, or doctor, or there will be a consequence you will not like.”

Does this mean, then, that we should be teaching people with disabilities to be disrespectful and aggressive? No. But nor should we teach them to, as it has been put, give in and give up. The balance here lies in self-advocacy. As in, if Miss Brown is your teacher, and she wants all the kids in her class to assert independence, that’s fine, and you should do that to the best of your ability. But if she asks you to do something you cannot yet do, or that you need a different way to do, but she doesn’t give you the option of the different way, that’s different. For instance, say Sofia is one of Miss Brown’s students. (Let’s put Sofia in about the first grade). Miss Brown asserts that all students should be able to print the letters A-M accurately, upper and lowercase, by the end of the first school quarter. Sofia, though, cannot do this; her writing is not legibile. The modification would be for her to keyboard, but Miss Brown insists on writing. If she clings stubbornly to that, and refuses modification, that’s disrespect to Sofia. A parent or guardian, and quite possibly the principal, needs to address this. And Sofia can learn self-advocacy if a trusted adult teaches her to–respectfully!–say, “I understand, Miss Brown, and I want to do this, but I really need to do it B way, not A.”

Or, say we have Gilbert, a teen with a disability–let’s say mild to moderate mental disabilities–in the “transition” phase of high school. His teachers and vocational counselor have said, during more than one meeting–IEP, vocational, whatever–that Gilbert would best serve society by working as a janitor and living in a men’s group home. Let’s say Gilbert has no problem with the second half of this scenario–maybe he likes the guys at the group home, and maybe it’s one of the good ones where they actually do real activities, but foster individuality, too. But say Gilbert doesn’t want to be a janitor. Should he keep his mouth shut because otherwise, he likes “the plan?” Or, worse, should he try to speak up, then put up with the disrespectful attitude of, “You think this, but you don’t understand”? No, and no. He needs to have the opportunity to find work he is truly interested in, and the opportunity to say, respectfully and assertively, “I want to do this work instead.” And parents, guardians, whoever, should support him in this.

Yes, “experts” can be valuable, in their proper roles. But too often, especially where expert opinions are concerned, people with disabilities end up constantly “dissed.” And I think it’s rude and inexcusable. Maybe our “experts” need some behavior goals.

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Squeaky Wheels: When “Elbow Grease” Will Not Cut It

Hello, readers,

For most of us, January 2nd means back to work after the holidays. I don’t return to work until tomorrow; I have a couple teacher workdays, and then I begin student-teaching high school English, may the Lord have mercy on me and the kids. But today is, for me, back to work in the blogosphere. Today’s topic: people with disabilities and the phenomenon of effort.

Now, yes, I know that for a person with a disability, some tasks others take for granted do require extra effort. For example, in college, I would buy half-gallons of milk because I don’t trust myself to lift and manuever a full gallon. Some clothing items take me a few seconds longer to get into. And I have to put effort into anything that involves minute visual detail, such as playing my favorite hidden object game online. There is nothing wrong with effort; in fact, most of the world would do well to take their cue from people with disabilities–and others–and put a little more effort into what they do. (Congress, I’m looking at you; why do you guys think you still can’t balance a darn checkbook after what, five years?) And effort often reaps great rewards. But what if it doesn’t? And what if, as sometimes happens, effort is counterproductive?

This happens sometimes for people with disabilities, and it happens more than you think. In many cases, it’s due to sheer ignorance of the disability’s nature. For example, I have had people who know nothing of CP say to me, “Can’t you exercise and make it better?” No. Yes, exercising does loosen my muscles, which is good, but my own efforts will not make me “better.” The underlying assumption there is, “You could be cured if you tried” and “You just don’t want to try/do anything.” That’s so laughable it’s maddening. Nothing could be further from the truth. And even when you explain this, some people still persist, stewing in their ignorance. I guess for them, it really is bliss.

But that’s the easy part of the question, “Can’t people with disabilities just try a little harder?” Other versions of this question exist, and they are more harmful than the one based in ignorance of the disability’s nature. The other versions of this question are more tied to specific manifestations of a disability. For example, let’s say we have a child with a disability named, hmmmm, Beth. Beth is supposed to be learning to overcome her speech impediment in speech therapy. She’s made progress, but her speech is not perfect. Her parents, though loving, push her even more at home. Everything, even things that are fun, like games, becomes an opportunity to “work on” or “practice” what she’s been learning. In fact, Beth is sick and tired of hearing the word “practice.” She practices a lot, but her speech is not perfect, and it’s gotten to the point that she feels valued only for what comes out of her mouth. Yet, the pervading message, from parents, teachers, the therapist, and even friends, has become “Try harder.”

Or let’s say we have an adult with a disability living under the same scenario. We’ll call him Campbell. He’s been told over and over that he needs to “practice” riding the bus, or doing laundry, or what have you. But frankly, Campbell thinks he’s doing okay at these things and would rather be doing things other men his age do. (Despite the fact that some men really could stand to spend the day in the laundry room, the great majority of them do not).

You get the idea. Pushing, to that extent, may backfire on you. And it’s likely that your loved one will come to see him or herself as a machine, programmed to practice, over and over, but never “get it.”

Now, a few cautionary notes. Yes, absolutely, people with disabilities, especially children, often need to be pushed. Otherwise, they may not reach their potential, may shut down, or may start using their disabilities as excuses–like any person tends to do if he or she is never required to stretch beyond a comfort zone. But there’s a big difference between gentle pushing that says, “I want you to try; if it works, great, if not, we’ll keep practicing or try another way” and pushing that says, “Try harder. You have to do this or you will never be able to ___.” And as you’re pushing, you need to be able to effectively communicate, “This is not a punishment. I’m asking you to do this because I know/think you can. No matter how this task turns out, I love and value you.”

The next cautionary note involves when to stop pushing. Yes, as much as we all, myself included, hate this, there are points in a person with a disability’s life that it may be better to give up on the mainstream way, and try another one. Let’s go back to Beth. If, despite her best efforts at speech therapy, it’s clear she would do better and be happier with an assistive technology device, there is nothing wrong with getting her one. It doesn’t mean she’s not “normal” or that she’s been given up on. The only thing anyone is giving up, at that point, is the idea that Beth will succeed only if she talks the “normal” way. Remember, modifications were invented, not so people with disabilities could “take the easy way out,” but so they could have a truly level playing field. Now, when to stop pushing will look different for every family. Sometimes, the person with a disability will tell you when to quit, and in most cases, it’s a good idea to listen. But sometimes, you need to use your own discernment, which I hope is rooted in love for your loved one, and a desire to see them succeed in whatever way that involves.

Yes, “elbow grease” is valuable. But it does not have infinite value. So let’s stop blaming people with disabilities for having little squeaks, and let’s stop telling them, “If you tried, you could get over it.” Instead, let’s educate ourselves, listen to the people in our lives, and realize that squeak may be less of a big deal than we thought.