Please Stop Assessing Me

Hello readers,

Last night, I had the pleasure of watching the new Pixar SparkShort “Loop.” We’ll talk more about “Loop” in a bit, but the inspiration for this post actually came from a Mighty contributor who also saw the cartoon. She has a five-year-old autistic daughter who, like Renee in “Loop,” is nonverbal. Her Mighty post was about how “Loop” nailed the representation of a character like Renee, and how it helped remind her to see the world through her daughter’s eyes.

These are all good things, and I could talk about all of them, but one thing in particular caught my attention. In the course of her post, this mother brought up that she is sometimes asked questions like, “[Does your daughter] often annoy others?” (Subtext: “with her autistic behaviors.”)

At first, this seems like an innocent or even stupid question because well, five-year-olds can be annoying. Kids of any age can be annoying, as can adults. If you ask the average, TAB person, “Do you sometimes annoy others,” you might get a laugh and a, “Doesn’t everybody?” You might get a, “Why do you ask” if that person is self-conscious, or a, “Define ‘annoying.'” (I especially like that one, because what seems harmless to you might bug another person to no end, so yeah, I’m gonna need clarification).

But…you guessed it. When this question is asked of a person with a disability, especially one like autism, there is no levity to it. As pointed out in the Mighty post, this type of question usually comes from authority figures like teachers, counselors, or therapists. The answer is usually used in some kind of assessment, often so that a “plan” can then be made for the PWD (not with them), so they can stop annoying others.

As with so many other things in Disability World, I have to ask, what’s up with that? More to the point, why are PWDs the only group who continue to be assessed ad nauseam, from birth to senior citizen status? Why is everything out of their mouth, every action they take, potential assessment fodder for plans and goals and “maybe someday if you work hard, you can do this?” Ugh.

Now, I get it. If you’re going to legitimately help someone, you probably need to “assess” what they do and don’t need from you. You “assess” a situation to know how to handle it, whether it concerns disability or not. Heck, whether it concerns people or not. As someone who has been accused of analyzing concepts and situations to death, I can appreciate that. My problem is that the way we approach assessment when it comes to PWDs is not inclusive. Yes, assessments can be made for IEPs, so a student with a disability can have a quality education. Yes, they can be made about certain skills like driving, to determine whether or not the PWD can do those skills safely and what alternatives might be.

Too often though, I see assessments, formal and non-formal, used as an excuse to keep persons with disabilities defined by deficits. I see assessments used as ways to keep them from doing things or take things from them, or place parameters on them that other people don’t have, and that would not exist without the disability. As in, yes, Zakhira can buy books whenever she likes. But because voracious reader Marguerite has autism, Marguerite can buy books as behavior rewards, and must turn over a certain percentage of money she makes or receives so that it will be spent “wisely.”

This constant “assessment” mentality also isn’t inclusive because it teaches TAB people that PWDs are much more different from them than alike. It also teaches PWDs, “No one except these few people, those privy to ‘assessments,’ can understand your ‘special needs.'” Speaking from experience, this happened to me. It got to the point where I told my parents, “I feel like you taught me, don’t trust anybody except you.” It got to the point where, if group projects were assigned, I prayed I would be allowed to work alone or with the instructor, because it was already so painful to try to socialize as a gifted person who was also affected by disability. I felt like instructors or teachers were at least mature, at least they knew better than to tease and bully and exclude. (Actually, they can do those things too, but enough about that).

So, How Do We Combat the Assessment Mentality?

Ah, glad you asked. We may never be able to get rid of assessments completely, because they are necessary evils of “the system.” However, there are certain things we can do, some of them inspired by Renee, Marcus, and “Loop.”

• Do not make everything a disability issue. This can be tricky, I know. It’s tricky when you interact with people who don’t speak with their mouths, because it takes awhile to know what they’re saying, and what if they are feeling something disability-related? It’s been tricky for me as a verbal person because disability has informed so much of my life. But try to step back from that. If the Renee in your life is rocking or humming, maybe she’s just trying to make sense of the world, to disengage for a minute and think. If she makes the same sound over and over, she might be saying, “I want to play” or “I am hungry or thirsty,” not, “Something is frightening or bothering me.” (And BTW, for all people with disabilities–please stop assuming that fear or anger are our primary emotional modes).
• If you see that something’s working, use it. Renee’s canoe instructor used her phone tone to communicate, “Are you okay” or “Everything’s cool.” Eventually, Marcus learned to do that, too. Unconventional, maybe, but it got the communication done. Does the PWD in your life have a “code word” or certain other expressions he or she uses at certain times, to say certain things? Learn their language–and do not belittle it. For instance, I got belittled and bullied by coworkers because, “The words you use go over students’ heads.” People like my parents and friends would say, “This happens because you like to play with words and there’s nothing wrong with that. Try saying up front, ‘If I use a word you don’t recognize, tell me. I’m not talking down to you.'”
• Let PWDs learn your language, too. One of the best things about Loop is that Marcus comes into Renee’s world–but she comes into his, too. Sometimes this doesn’t work well. At one point, Marcus starts rocking the canoe, but then acts as if Renee is doing something bad when she does the same thing. (Which, that’s another thing TABs need to stop doing, but whatever). Over time though, Renee learns what Marcus really wants–for example, to show her cool things in a cave. Similarly, Marcus learns Renee is more nuanced than he thought–for instance, she might show him a poop emoji on her phone because they passed the port-a-potty, which is near the cattails she likes to touch, so that’s where she wants to go. It doesn’t necessarily mean, “I have to poop.” And on that note…
• Recognize that languages and actions have nuances. Again, this takes time and effort. You won’t get it right away, but that’s okay. Better to keep trying than to assume every noise, every word, every action, is simplistic enough that it can be assessed and consigned to a “plan for better behavior.” Remember too, that “better behavior” often means “normal behavior as determined by TAB people who think they are in charge.” That mentality doesn’t make anything better.
• Just go with it. As Marcus learned, sometimes Renee was going to get upset, and that was okay–because all people get upset sometimes. Yeah, not everybody hides under a canoe when that happens, but Renee needed to. And that’s 100% okay. Sometimes when you don’t understand, the best thing to do is just go with it until you do. Obviously, if someone is getting hurt or is in deep distress, you’re gonna need backup. But if everything seems otherwise okay, and the person you’re communicating with–disabled or not–seems self-regulatory and able to cope, then you’re fine. Let them know you’re there and not going anyplace, and that you will help however you can if they want.

Of course, these tips do require some “assessment”–of the situation, not the person. Know the difference, and always know you are dealing with a person first, a disability second or third or maybe not at all. Then I hope your final assessment of whatever the interaction was will be, “We both learned something, we both had a great time, and I genuinely like and appreciate this person for who they are.”