I could say “both” and leave the post at that. In many ways, you could say I should, because both are important. Actually though, that’s why I have to write a post. Because the way the abled-majority world works, the fact that both are important, is the reason why disabled people are barred from so much of life. It’s the reason why the construct of “special,” the construct of “services,” the construct of yeah, I’m gonna say it, “separate but equal,” continues existing for us.
What do I mean by this? In a nutshell, I mean that in many situations, people with disabilities are assumed able to understand nothing and thus do nothing, thus take no action (and we all know what happens when assumptions are made). In other situations though, it’s assumed (same pitfall) to be one or the other, thus both.
Yeah, I know, you’re probably going: Huh? Hang in there with me, I’ve got an example for you.
This happened to me a lot in math, but especially in geometry. You remember, the course that I probably shouldn’t have taken, but was kinda forced into because in my high school’s curriculum, it was a required course for college prep. As in, this course is not on your record, colleges deem you ineligible. (No, this is not true across the United States, but it was for our system, region, etc. It was a whole thing). I had the same issue with Algebra I and II, but geometry was a much hairier and harder-to-wrangle beast because it was much more visual even than those two. It was much more dependent on visual and hand-eye skills, which I did and do not have.
Now, I did have support in geometry, as much as could be given (and as much as the school eventually learned to give; I will get to that). I had an enlarged textbook; I joked with my teacher that I felt like Jiminy Cricket using it because it took up the whole desk, and with me being a short girl with glasses, ya know). I had enlarged homework and tests and a reduced homework load. I had a scribe for class and tests (from the special ed department. This was not ideal, but she did have some form of training in what disabled students needed; she was not just some Jane Doe off the street who assumed scribing was “just taking notes.”)
The problem was, communication between myself and this scribe quickly broke way down. Part of this was because she had spent most of her career working with lower elementary students whose support needs were very high and mostly cognitive, and she tended to relate to me that way (other teachers, my parents, etc. claimed I could not prove this and got mad at me for “disrespecting” her when I said so). But it was also because this scribe could not grasp that I understood the concepts that my geometry teacher taught in class. When/if I struggled to tell her how to “show my work” on a test question, she would ask over and over, “What does that look like” (where “that” was an isoceles triangle, or the intersection of plane M with line N or whatever). Or she would say over and over, “Read the question/read the question again.”
Monkey See, Monkey Do…But I’m Not a Monkey, You Darn Dirty Ape!
As you can imagine, I became extremely frustrated, anxious, and borderline depressed. I spent most classes either borderline falling asleep (first period combined with mind-numbing boredom) or on the verge of tears, then being scolded for one or the other. I never finished a test in a single class period, so would have to come in after school to finish, and would then get scolded for crying over the test and get accused of “wasting time.” I tried talking to allies like my occupational therapist, but the OT then talked to Mom, who misunderstood and angrily told me to stop having “psychiatric sessions” with anyone who I could “make” listen to me. I was told that “this ‘business’ of ‘I can’t see’ was “an excuse” not to do what I needed to do, and that I was being disrespectful to my teacher, the scribe, everybody who wanted so badly to help me. Meanwhile, these people who allegedly wanted so badly to help me, acted every day as if they saw a crying, whining, malingering child who just could not understand high school concepts.
See, that was the sticking point. Not that everything else wasn’t awful, because it was. But what I want to focus on for this post and what I want to try to teach on, is this fallacy that because I could not do what the scribe, the teacher, whoever, was asking, in an abled way, I did not understand. As if, because I could not physically say what something looked like (because if I could, I would not need a scribe), I did not understand geometry at all and could not benefit from it (and thus, in a roundabout way, probably could not benefit from the advanced nature of college). As if, because I could not respond in one particular way, it must mean the simplest task (read the question), was not penetrating my brain, or as if, if I just read the question again and again, I would somehow be able to comply.
If I Only Had a Brain…And We Do!
As you can imagine or have probably lived yourself, this is something disabled people get hit with a lot. And no, it is not just the lower-support needs members of our community (although the media likes to focus there, and that needs to change. Remember the Secretly Smart trope? Yeah, this is another reason to avoid it). What I have noticed and you may have too, is that the abled majority doesn’t just have in its mind this set of milestones we must meet to be considered “abled” or “normal.” It also has a set way of doing or understanding these milestones or skills, and if we don’t do them their way, then we have failed. Our ways of doing them don’t count. We don’t do, therefore we must not understand. Conversely, we don’t understand, or appear not to, and therefore we cannot do. Or, we can only do or understand to the point we are allowed to. This is like the recent infomercial where a young woman with Down Syndrome says, “You assume I can’t learn Shakespeare, so you don’t teach me Shakespeare and your assumption becomes reality.” A teacher is then shown pointing to the lyrics of “Old MacDonald” on a blackboard. Ugh.
Of course, this also has several other iterations. With my geometry struggles for instance, the iteration was something like, “She’s academically/intellectually gifted, so we know she understands a lot.” Therefore, the conclusion jumped to was, “She must be able to understand and do everything with just a little bit of physical help, and if she shows us anything else, it’s a sign of noncompliance and malingering.” And that is how I was treated, including by loved ones, which just made the situation and my mental health that much worse. (I mean, how would you feel if you went through something like that and your own mom yelled at you to “stop pulling people into psychiatric sessions?” Mom, Dad, I know you guys are Boomers, but get a freaking grip)! With another disabled person, the iteration might be, “We know Down Syndrome is a cognitive disability, so we must assume Adaliah understands the least amount of any of her peers.” Which, um, NO. (I’m thinking back now to a time very early in this blog when I used Shakespeare or the Canterbury Tales as an example of something the average person with Down Syndrome might not interact with, and…my very deepest chagrin and apologies. I’m going to get to that, too).
So, Understanding or Action: Which Is More Important (Where to Start)?
Well, the truth is, the answer is both, but there is in fact a starting point. The starting point depends on the person, and it starts with the strength. Let’s go back to my example first and then I’ll provide a couple more scenarios.
In my scenario, the understanding was more important. As in, let’s say you have a disabled person who must be in your course for whatever reason, and for whatever physical or cognitive reason, cannot physically “show their work” in geometry or write a full essay on Hamlet or whatever. But you know from observation and interaction, this person understands the concepts. The lights are on, somebody’s home. They do not have to read the question or prompt over and over again; they get it. Questions such as “what does that look like” or “what does this word mean” will not help because well, if they could answer that, they would not need the accommodations provided via the IEP, 504, disability services, whatever. As I told my OT and as she agreed, “I already have to handle my brain. I should not have to be the scribe’s brain, too. A question like, ‘what does that look like’ asks me to be her brain.” (The point being: “show your work” was essentially asking me, take what your brain knows, and physically put it on the paper. But because you have cerebral palsy, we know you can’t do that, because you can neither write with a pencil nor manipulate a computer mouse to draw figures, so that’s already unfair).
Now, again, the ideal solution would’ve been, do not force her to take this class, esp. as a measure of college prep, because one thing has nothing to do with the other. The equally ideal alternative would’ve been, “Take ‘show your work’ off the table.” But the nature of the math beast is that if work is not shown, the person working the problem can’t prove his or her theory/integrity of the work. So after a long talk with my OT, the geometry teacher (who was much more supportive than the scribe), and a tutor, we all came up with a battle plan for the exam.
What I did was, I took those huge textbooks home, opened up the glossary, and memorized every verbal, word-based definition I could fit in my brain. Thus, when it came to exam time, I could say, “Draw this, which is defined as _____” (blah, blah, blah). The scribe had been specifically told, “Do not ask her ‘what does that look like’ again,” but even if she had, she could not argue. Why? Because what came out of my mouth, was in the book. I was not scrambling for words, I was not making something up, she could not question if I was fishing for answers. Plus, because the exam was multiple choice, the format and my definitions meant she could not constantly demand I read the questions or look at them again over and over. I got a 75, which to me was a bad grade, but I still passed.
So, let’s do it the other way (or at least try. Any errors are mine and I beg indulgence/forgiveness). Let’s say you have Wrenley in your English class. Let’s say you teach juniors, which last I checked is generally American Lit. Wrenley has Down Syndrome. She uses an appropriately modified curriculum and does okay in your class, but kind of in the C to low-mid B range, not because of Down Syndrome necessarily. English isn’t her “thing” to begin with and DS doesn’t help. She can do what you as the teacher need to see, it’s just that the understanding and organization of some concepts trip her up. Based on this, Wrenley’s grades are falling enough that the IEP team, including her parents, are pushing you to retain her and/or push her back to an Occupational/Life Skills English course, which will directly impact Wrenley’s ability to reach personal academic and social milestones during senior year.
Now, as one teacher, you would not have all the power here, because at least in my state, no student of any ability level can be retained based on one course (and I don’t think this is the case federally). But you can and should make the case that what Wrenley is doing holds more weight for her than some abstract concept of understanding. Think of it this way. In my case, what I understood about geometry was not clear if you looked at what I was able to do, but given the right support and help, it could easily become clearer. In Wrenley’s case, given the right support, what she can do will better and more easily demonstrate how much she understands.
So in Wrenley’s case, what you as the teacher can do is a lot like what my OT, teacher, and eventually parents did. You can unite with the IEP team and say, “Okay, it looks like we need to rethink some stuff here.” For example, what are Wrenley’s IEP goals in relation to English class? What are her academic goals, personal and otherwise? Are those goals relevant, meaningful, and measurable? In other words, if the actual goals are, “Wrenley will understand how to organize an essay,” we gotta back up because you can’t measure that. We need to say and write something like, “Wrenley will organize an essay based on X specific method we know works for her, with assistance.” If Wrenley’s abled peers are expected to give a presentation in which they analyze three American Lit short stories, with three accompanying visual aids, and Wrenley can prove she can do the same thing with one story, then her workload needs to be reduced to one. Or, if she can do a full analysis on one theme of one story, she may not need to tie that theme into 3-5 stories the same way her peers are doing. If she can show she understands a concept or theme based on a more hands-on, STEM, or similar project, maybe she doesn’t need to do a written paper, or at least not a full one.
Forming the Union…
It may not be perfect (heh, heh, thanks, Pres. Lincoln. Still on the American thing, sorry). But I’m hoping we can get closer. In closing, when thinking about how to unite understanding and action in your life as a disabled person, or the lives of the disabled students, loved ones, or others you know:
–Think about which is more important. Observe the person. Ask them. Think about their strengths and talents. For example, my geometry teacher knew drawing and hand-eye stuff gave me anxiety attacks, but routinely praised my verbal abilities and “space age” memory. That’s how he proved himself an ally when exam time got closer and the stakes were raised. That’s how I knew he cared. Show the people in your life that you care who they are as people, you care about their strengths, and you see what they are capable of with, not in spite of, their disabilities. Show them that your mission is to help them make everything work together.
–Make plans and goals where both sides feed each other. What the person can do should show what they understand. The depth of what they understand should be reflected in what they are able and allowed to do. If this requires accommodations or modifications, find a way to bring those in. If that means making a STEM class more verbal, there are ways to make that happen. If that means letting a student who uses AAC or a word board or drawing do an oral book report, have at it. Sometimes that could mean having the student with a disability teach someone else (e.g., I don’t have the strength to do CPR, but you can bet I’ve read up and can walk somebody through it). Sometimes it could mean teaching them up to the point where they need to stop (yes, I can’t drive a car right now, but my dad did insist that I get behind the wheel once and at least know how to get the vehicle moving, just in case of some whacko emergency).
–Use the person’s learning style (s). I’m heavily verbal, so when someone instructs me or tells me something, I’ll often listen and then ask, “Is it okay if I repeat this back to you?” Or I might say, “Let me explain this to you the way it was taught to me, and if you don’t get it, let me know and I’ll back up.” Maybe your loved one, student, or other person is visual, so you might encourage them to watch you or take a video with your phone for them. Maybe they’re kinesthetic; move around while you’re talking through something. Maybe they’re musical; have some music on or if that’s not possible, tap something or use mnemonics or make up rhymes. Draw pictures. Use colors. Break words or math problems into chunks. The possibilities are quite literally endless.
–Know that there are places for both, but there are also places for one or the other. That is, I have accepted that with my autism, I will probably never be able to teach 4 college-level literature classes per day like I once dreamed of doing. I don’t have the brain structure or the stamina. Yes, that does hurt. Yes, there’s some regret there. But there is a place for one-on-one teaching, personal syllabi that I create, creative writing coaching, my own novels, all kinds of other things. Maybe your loved one with cerebral palsy loves and understands everything about basketball but will never play or commentate. There are sports columnists and analysts in the world. Maybe your loved one with Down Syndrome loves their pets and your garden but will never own a landscaping business. There are such things as community gardens, pet-sitting businesses, and therapy pet programs. People with disabilities can understand and do all kinds of things, at the same time. They can have all kinds of places in the world, and those places do not need to be in some kind of “special” box.
At some point, we’re all going to understand some things or do some things better than others. Understanding and doing, the brain and the hands, work together more than even I ever believed they did. So instead of continuing to teach disabled people that it’s one or the other, or that if you can’t do both, you can do neither, let’s teach them that any combination is the one they’re meant to have and use.
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