The Fitness Fight: People with Disabilities and Weight

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!

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Castles in the Air: The Difference Between Dreams and Goals

Hello, readers,

I enjoy watching Dr. Phil. Not every episode, mind you. Some of them, like the ones about paternity tests and the ones where people just scream at each other for an hour, I can live without. I don’t agree with everything Dr. Phil says, either. But he does cover some interesting topics, so I’ll tune in a few times a week. My favorite topics tend to revolve around parenting, mental health issues, and physical health issues, whether that’s obesity or anorexia/bulimia. Those aren’t the only health issues covered, but they are frequent.

Dr. Phil also likes to feature “moochers” on his show. I’ll define this population as twenty-somethings, or in some cases thirty-somethings, who still live with their parents and are under- or unemployed. But I’m not going to leave the definition there.

Why? That’s right–it’s because far too many people with disabilities are part of that definition. In fact, if I left that definition as was, I’d be downright depressed because that would make me a moocher. Hear this clearly: in most cases, people with disabilities are not moochers. If the disability is legitimate, if the person is trying or has tried several avenues to better his or her situation, or if living with parents is the best option (as opposed to in a dangerous neighborhood or inappropriate group setting) then that person is not a moocher. I’ll add to the definition now:

A moocher is an adult, living with parents, under- or unemployed, who:

  • Does not care about his/her situation
  • Has no desire to change it
  • Takes advantage of parents’ love and generosity by being disrespectful or breaking house rules
  • Uses money only to spoil self or engages in risky behavior using what earnings exist (this is the guy who drinks his paycheck and then totals the family car)
  • Is irresponsible with self (does not groom self, does not clean room, leaves horrific messes in room, dresses sloppily)
  • If employed: uses money irresponsibly or does not set aside money to better self and situation

Somewhat long definition, I know, but I’m using examples I’ve seen. However, I do want to talk today about PWDs and the moocher syndrome, because I see two things happening in regards to this subject:

1. People with disabilities are being encouraged to use the disability as an excuse not to do anything

OR:

2. People with disabilities have dreams or are given goals by an aide, a vocational rehab agency, whatever–but then not helped to fulfill them or expected to do so. Therefore, the most hardworking PWD in the world can be made to feel like a moocher. Some insensitive clods even say that, behind their backs or to their faces, and it just worsens the whole situation.

So, what can and should we do about these problems? I’ll address them in order.

1. My observance of this issue came from last Friday’s episode of Dr. Phil. Dr. Phil’s guest that day was a moocher named Christopher. Christopher is diabetic, and his parents blamed his lack of respect, self-care, and motivation on the diabetes. But as Dr. Phil said, diabetes is not a disability, it is a medical condition that properly managed doesn’t have to reduce quality of life, especially for a young person.

But what if the person really has a disability? Is he or she doomed to live with parents forever and never have any significant experiences or relationships outside the family? Yes–IF we keep doing what we’re doing when it comes to PWDs–the segregation, the negative prophecies, the obscene amounts of therapy and meds, and other assorted crap. But NOT if we treat them as whole people and expect them to do what they are capable of doing. Yes, in some cases, that may be very little. And a PWD who lives with family out of need or want is neither a moocher nor a failure. The problem comes in when we let the disability become the excuse, or when we make dreams without goals. Which brings me to:

2. Dr.Phil defines a dream vs. a goal this way. A dream has no timeline. It’s just kind of up in the air. A goal has a timeline and realistic steps. A goal also has a support system, and this is vital to PWDs. I think we have way too many PWDs who feel like moochers in our world today, and it’s partially because we allow them to dream, but we don’t respect their goals (the goals they want, not the ones set for them to benefit “the system.”) So when a PWD says, “I want to live on my own,” for example, let’s take that from “castle in the air” dream status and make it a goal. Say to the person, “Okay, I will help you make that happen. We are gonna do 1, 2, 3, and 4, and our goal will be to get you into an apartment in 6 months.” And if the goal needs tweaking? Don’t do what others are tempted to do–don’t just shelve it and say, “You weren’t ready.” Keep trying! And furthermore, keep trying until you get there!

PWDs are too often accused of being moochers–which connotes sloppy and disrespectful. But they rarely, rarely are. They want to be contributors–so let’s make that happen.

The Trouble with Treatment: What Place Does Therapy Have in the Life of a PWD?

Hello readers,

As you know, I enjoy reading parenting magazines even though I’m still single. I like knowing what kids are going through, how they think, and what they need from grown-ups. The newest issue of Parents just hit Barnes & Noble, and I found an article that looked rather fascinating. It’s entitled “Your Child Has Cancer.” As expected, it’s about how that diagnosis affects a familyt and what they can do to stay sane when cancer occurs.

I didn’t get a chance to do much more than skim, but even that led to some new thoughts. For example, I thought about what cancer means–for example, the first thing people think of when it comes up. Often, the first thing they think about is treatment. Chemotherapy, radiation, how to get and keep the right doctors, how to deal with meds, how to balance hospital life with “real life,” and how to make sure their kids’ lives and futures don’t suddenly revolve around the cancer. And then I thought, well, despite everyone’s best intentions, life will revolve around cancer in some ways for quite awhile. So would it be better if the children didn’t undergo cancer treatment?

Of course not, we say–and in 99.999% of cases, that’s correct. Why? Because cancer treatment is life-saving. Now, what does this have to do with kids who have disabilities? I’ll tell you. The two are connected because some people think of cancer and disability as closely related. As in, “You would never deny a child cancer treatment, or let him or her tell you not to allow that treatment. So why are today’s advocates having debates about therapy for various disabilities? Should our “disability protocol” move away from therapy, or should we just tell our kids that’s life, like it or lump it?”

I’ve done a little bit of work with this topic before, way back when this blog was a baby. I also talk about therapy somewhat frequently, advocating a “natural” approach to it. But then again, what is a natural approach? How much is too much? How much should advocates, like me and others, agree with the people who say, “It’s similar to cancer–you’ve got to let therapy into a big part of your life or else your child won’t have the life he or she deserves?” It’s a tough question because I so want every PWD to have the best quality of life possible, and often, therapy does help there. I mean, if a child with cerebral palsy has very difficult-to-understand speech, and his parents are not able to improve that issue on their own, you’d think “treatment” through therapy would be part of the solution.

You would think correctly. You see, as much as I advocate a natural approach to disability, I realize there are some times where “experts” are needed. I also realize that as painful as it might be, children don’t have the maturity or the abstract thinking ability to dictate the length and parameters of their own therapies or treatments. Kids have rights, and kids need dignity and respect, but they aren’t equipped to make adult-size decisions. That’s what adults are for.

So essentially, I’m coming down as pro-therapy–with a few tips. And here they are:

1. Recognize that disability is not an illness like cancer. Yes, there are similarities involved. Disability greatly affects life, if not in one way, then in another. Disability needs guidance and help so that it becomes a part of the child’s life, not his or her whole life, and that means treatment. But it cannot be cured or put into remission. It is generally not life-threatening. It is not a reason to put a child into a “treatment bubble” (and neither is cancer, by the way, unless we’re talking about the most extreme and terminal types, in which cases parents can afford a bit of hyper-vigilance).

2. Make sure the treatments you have really help. Get real and stay real. Insist that therapists make treatments relevant to your child’s life. For example, sitting in a rehabilitation room working on posture exercises? Probably boring and not useful. Working on them while playing a favorite computer game? Relevant and useful, because what if you had to stop playing because your neck and back hurt?

3. Treatment and therapy should not be occasions for punishment or bribery. Self-explanatory. Also, don’t make natural gift-giving or opportunities for outings contingent only upon therapeutic success. Example: A trip to the ice cream parlor after therapy can remain a standing tradition–but maybe extra toppings are in fact contingent upon cooperation.

4. Thoroughly vet your therapists and physicians. Make sure they actually like kids (you’d be surprised at how many don’t) and that they see your child as a whole person. Also make sure that the treatment professional recognizes and even plays to your child’s strengths. For instance, if your child likes toy trucks or dinosaurs, those can be used as props for grip training.

5. Take a break. Your home is not a therapy clinic. Of course, some therapeutic things can be done at home, but make sure that this is something you, your spouse, and your family agrees upon. Then make sure you set some ground rules–X is therapy time. Y and Z is not. Do not let therapy interfere with family time or time with friends.