Wednesday, November 18, 2020

Crafting Non-Ableist Behavior/Learning Goals

 I've been putting a lot of thought into curriculum design lately, since I got inspired to try to plan out my future child's potential homeschooling curriculum. And since I've had a lot of struggles with life skills that I wish I'd been taught earlier, my curriculum plans are including those skills. Looking into premade life skills curriculums, however, I've run into numerous examples of normalization/ableism in the goals, such as goals like "dressing appropriately for a job interview" or "turning on the lights when they're in a dark room". And it got me thinking, how can you tell if a learning or behavior goal is actually a valuable goal for the individual, or just something that will make them look more normal without improving their life?

So, here's my general idea of a guide for how to tease those apart:

First, consider the pros and cons of doing the thing for the student. I get the feeling most teachers don't think about the potential cons of learning life skills, or don't think there are any cons. And certainly some skills, such as being able to independently put on the clothes they'd be wearing anyway, don't really seem to have much of a downside. But many life skills do have cons, which should be weighed along with the pros.

One example: diversifying food selection, or being more willing to eat new foods. This is often a problematic goal set for picky eaters - personally, when I got autism treatment as an adult, their attempts to impose this goal actually led to me quitting the treatment. Let's look at the pros and cons of this goal.

The biggest con I can think of is that it involves asking the student to eat things that they might find extremely unpleasant to eat. For me, the argument that drove me out of the treatment centered around mushrooms, a food that disgusts me about as much as eating mold disgusts me. 

It's also important to keep in mind that many of the sensory issues that contribute to food sensitivity may not be subject to habituation, or may be very slow to habituate, so this con doesn't just apply during the training. Whenever you try to train an autistic person to tolerate a sensation they find intolerable, there's the potential that they will never stop being bothered by that sensation. For example, I have taken karate, but as soon as I got my first gi, I found that it was very unpleasant to wear. I tried to wear it anyway, but it would continue to bother me the entire 2-3 hours I was in class, and the only thing that helped partially was to periodically throw myself against mats to get deep pressure. Rather than getting better over time, however, my sensitivity to the texture of my gi actually got worse.

So, what are the pros of greater food variety? Potential for a healthier diet, depending on which new foods are targeted. Less likelihood of finding themselves hungry while surrounded by food they can't eat. Possibly reducing food costs, if cheap foods are targeted. Better ability to adapt if they need to make dietary changes in the future, such as if they develop type 2 diabetes or move to a place where their favorite foods are hard to find. And less likelihood of getting into conflict with people who insist on getting offended if you don't want to eat food they picked out for you.

Another example: toilet training. The cons of toilet training involve the discomfort and bother of having to hold your pee and poop until you get to a bathroom, the potential of being somewhere where a bathroom isn't readily available, and less physical comfort if they enjoy the sensation of wearing a (used or clean) diaper.

The pros include less risks of skin breakdown and bladder infections, less odors that others around them may find unpleasant, less production of garbage and/or use of laundry, less risk of transmitting intestinal diseases, greater physical comfort if they dislike the sensation of wearing a (used or clean) diaper, more independence with personal hygiene, and avoiding the stigma that incontinence carries for those past early childhood.

So once you've identified the pros and cons, look at each item and ask:

Is this factually true?

Is this the student's problem or someone else's?                                                                       

What other behaviors could allow them to gain the same benefits without the cons?

For example, although this is a common concern, in most cases, picky eating does not actually place the person at risk of nutritional deficiency. Studies have shown that most picky eaters actually have diets that are about as balanced nutritionally as those of non-picky eaters. The exception is those individuals whose list of acceptable foods is extremely small - say, single digits. It's valuable to consult a dietician if there are concerns that an individual may not be getting enough of any nutrients, rather than assuming that a picky eater's diet is automatically unhealthy.

Meanwhile, the problem of getting into conflict with others over food is not actually the picky eater’s problem. Just because there are social conventions around giving and receiving food does not make those conventions right, or give people the right to penalize others for not conforming to those conventions. In addition, people who take offense at others not accepting their gifts of food harm more than just picky eaters - people with other reasons for avoiding food, such as health, religious or ethical reasons, also frequently come into conflict with such people, too. And in the case of health issues, people who take offense at others refusing food have sometimes contributed to people dying or getting seriously injured, especially if they use deception or exert power to get others to eat food they don’t want to eat. Given that the pattern of “insisting that others must accept and eat food given to them” causes serious problems for multiple groups, including life-threatening problems for some people, it seems pretty clear to me that this is a more serious, concerning behavior than rejecting certain foods.

Of course, recognizing that it’s someone else’s problem doesn’t mean you can’t take measures to protect yourself. A good example are rape and sexual assault prevention programs that target potential victims and teach them tactics to keep themselves safe. It can also be valuable to talk to disabled students about tactics to protect themselves from ableism. However, in these situations, merely complying with harmful actions from others is usually not the best course of action, and even if it’s best to comply in the moment, it’s insufficient to keep them safe in the future. All students need to have strategies for opposing unjust actions, even from people in positions of authority. At this point, the third question above comes into play.

Similarly, the stigma of incontinence is not the problem of the person who wears and uses diapers, and harms both people who could be toilet trained but aren’t and people who can’t be toilet trained. However, there are also health concerns for not being toilet trained, to the point where the average lifespans of people with severe disabilities differ depending on their toileting abilities. This is especially true for non-ambulatory people, for whom using diapers greatly increases the risk of skin breakdown from pressure sores. However, even if toilet training isn’t an option, measures can be taken to improve skin health, such as frequent changes, good cleaning practices, etc, many of which the individual may be able to learn to deal with. For example, if they can change their own diaper, they can ensure more frequent changes for themselves. Or if they can recognize when they need a change and ask for it, they can encourage caregivers to change them more often.

So, based on the analysis of our two example tasks, I would say that in most cases, toilet training is a worthy goal and being less picky about food is not. However, in both cases, there are situations where it is or isn’t a good goal. If an individual accepts only a single-digit list of foods, diversifying that is probably a good idea. Meanwhile, if a person can’t hold their pee or poop well enough to prevent accidents unless they limit fluids, avoid activities where bathrooms aren’t readily accessible, and/or allow for frequent interruptions in activities, toilet training may not be worth it. Of course, all of those things are likely to be true in the short term, but if they’re not improving, it may be worth going back to diapers.

Lastly, I also encourage, if possible, discussing these pros and cons with the student. Some students might not be able to understand even if you explain it, but for others, telling them that wearing a used diaper can be bad for your skin could be a good way to motivate them to cooperate with toilet training. And if there’s any room for uncertainty, it’s better to give explanations that aren’t understood than fail to explain something the student could have understood.