Hello and Happy Halloween, readers!
Today is a day of colorful costumes, fun and scary tricks, and sweet treats. And despite the original Catholic origins of Samhain (the word from which “Halloween” derives) there are some ghoulish things about it. For the purpose of this blog, I’m not necessarily talking about horror movies, fake blood displays, and Judgment Houses where well-meaning but misguided Christians walk unsuspecting visitors through rooms decorated to look like a suicide scene or an abortion clinic, complete with bloody meat used to represent parts of a baby. Any of you guys out there listening: seriously, rethink that campaign. There’re better ways to show you’re pro-life, okay?
No, I’m talking about stuff like, kids with autism being barred from Halloween festivities because nobody bothered to make them sensory-friendly. I’m talking about kids with physical disabilities who don’t get to go out because nobody was there to build them a suitable costume, though several parents out there do. For instance, those of you who utilize Facebook have no doubt seen a photo of a little boy in a wheelchair, dressed as an ice cream man, complete with a homemade “truck” built around his wheelchair. That family rocks, you guys.
I’m also talking about the candy. Now, candy is a temptation to everybody, disability or not. If I could eat anything I wanted, I’d probably start the day with five each of those miniature Hershey or Mounds bars. But the problem comes in when, as sometimes happens, people decide kids with disabilities shouldn’t enjoy candy or any other sweets because “they’re disabled; they can’t exercise; they’ll just gain weight.” In fact, there is a hushed, but prevalent stereotype out there that says all PWDs are somehow destined to be overweight. Hushed meaning, we don’t talk much about it, but nobody acts surprised when a PWD is overweight or expects them to improve upon it. And that’s a real, ghoulish problem.
Now, please hear what I am not saying. I am not saying PWDs have to be skinny to bust a stereotype. Nor am I bashing the real weight-related difficulties that come with physical disabilities. I’m also not suggesting that if a PWD is overweight, he or she is somehow “less.” As a PWD who danced on the edge of anorexia during college, I’m the last to say that. I’m simply here to rip the scary mask off the weight issue and discuss what we can do about it.
According to health.ny.gov, PWDs are twice as likely to be obese as the general population. In New York alone, a quarter of PWDs living there are obese. But here’s where the scary part comes in: most people read stats like that and shrug, going on their merry way. Often, it’s because they don’t know why the problem exists, so with help from that health.ny.gov article, let’s examine a few reasons, and how we can respond.
1. Accessibility. PWDs know what a healthy diet is, but they often don’t have access to it. This could be for a variety of reasons; maybe the healthier items are on upper shelves in the supermarket. Maybe the person can’t get to the supermarket because he or she doesn’t drive, or because he or she must be dependent on someone else’s schedule. There’s also the problem of cooking; most PWDs are barred from the kitchen for most of their lives because people assume they can’t cook, so they don’t learn. Therefore, they don’t feel confident in the kitchen and get stuck living on “easy” foods like TV dinners, which are not the healthiest.
2. Dependence. The article I’ve referenced talks about the fact that caregivers and aides often choose to prepare easy foods. That’s not a dig at caregivers, but it is a look at the fact that, because those caregivers must also care for their own needs, they sometimes take shortcuts. The caregiver may not always be around at mealtime, so he or she might leave something to microwave or heat up on the stovetop. That item might be canned soup or boxed mac ‘n’ cheese.
Aides and caregivers also have to watch out for the fact that they may get in a rut–that is, prepare the same meals several times in one week or month. Now, that could be because the client asks for it. In that case, there’s an opportunity to try to get the PWD to experiment with food, just as you would anyone else. But a food rut could also be due to a scheduling conflict. And what happens when the food you eat is boring? Right–you go looking for something else, and because of human nature (not disability nature, people) that “something else” is usually junk food. After all, junk food makes us feel good–for awhile.
3. Exercise issues. This is a big one, and I speak from experience. When your body doesn’t move the way you want it to, exercise can be torture. It’s also difficult because sometimes, people don’t understand why you can’t exercise or think you just don’t want to. For example, some people don’t understand why I don’t use elliptical machines and treadmills at the gym. It’s because I have no depth perception, so being on those large machines and expected to balance is scary. I have fallen off treadmills at least ten times. But here’s the deal–I have found exercise that works for me (I stationary bike, walk, do yoga or Zumba–things that don’t focus as much on balance). Too often, PWDs aren’t given this opportunity. It’s assumed they just can’t exercise–and then they’re blamed for weight gain!
4. Restrictions. Sometimes people–even the person with the disability herself–goes too far when it comes to preventing weight gain. Remember when I talked about almost being anorexic in college? Yeah, that was because I got obsessive about calorie-counting–partly because of that “disabled = fat” stereotype. A lot of PWDs go through this, thinking that their weight is one more thing “wrong” with their body. Or, they have people counting calories for them, micromanaging what they can and cannot eat. So what do they do? Well, like anybody else, PWDs rebel against that. They may sneak food or binge, and then you’ve got real trouble. Or, they acquiesce to the food police, and then you’re dealing with a whole other beast.
So what can and should we do? Some of it involves inversion: like, if your supermarket is inaccessible, work to make it so–and no, that doesn’t mean spending money. It often means being courteous enough to see that someone needs help, and respond appropriately. If you’re a caregiver or an aide, try to work your schedule around mealtime so your client can eat healthfully. If this isn’t possible, you may want to cook meals ahead of time for your client to freeze and then thaw out later (vegetarian pasta dishes, baked chicken, pot roast, you name it). Feed your client the way you would feed family and friends–because even if they don’t live with you, feeding them means breaking bread with them.
Allow PWDs choices in their exercise, and don’t make exercise sound like a punishment (“You need to do this so you won’t get fat/you better do this because you ate that cookie.”) Focus on the fact that exercise makes us feel good and gives us energy. If exercise is boring–which it often is–suggest a great playlist or a book on tape as an accompaniment. There’s also nothing wrong with watching TV while exercising, because just like candy, TV in itself isn’t evil. (Note: if needed, do make sure the PWD has a spotter nearby during vigorous routines or anything that involves balancing on a machine. If possible, speak to the local gym and ask if any trainers have worked with PWDs before, but don’t feel your loved one can only benefit from “segregated” classes).
And for goodness’ sake, people, stop the restrictions and the fat talk. After all, nobody ever died from eating a candy bar (well, er, somebody did in Monk once, but that’s fiction). So go out, have a happy Halloween, eat some candy–and scare some people with the amazing truth about life with a disability. MWAH-HA-HA-HA-HA!