To say I have been a weight-conscious gal for my entire adult like would be an understatement. I once received a new bathroom scale as a birthday gift and I was not offended. I was thrilled. Pre-paralysis, I weighed myself daily, sometimes twice a day. Being so scale-obsessed isn’t recommended by nutritionists or personal trainers, but it always worked for me. If I noticed that my weight had ticked up a bit, I would eat a little better for the next week or so, maybe add an extra workout to my week. My scale obsession may not have been advisable, but it always worked to keep my weight in check. Other than during pregnancy, I was consistently a size 6 for my entire adult life, only occasionally fluctuating up to a size 8 or down to a size 4.
Enter paralysis. When one is first paralyzed and confined to bed without muscle tone or activity, the weight drops fast. At least it did for me. At the time of my accident I was still nursing my son, so I was still carrying around that extra 5-7 pounds of emergency fat stores, but I was otherwise back to my pre-baby weight of around 135 lbs. After 14 weeks in the hospital, I came home weighing 110 lbs. Pretty gaunt for my 5′ 7″ frame. As I recovered, weight slowly crept back on. A year out from my injury I was back in my pre-accident clothing. Then the next year I was up a pant size, the next year another pant size, and this year yet another. I am now officially “obese.” I don’t have much appetite and I eat very little, but it is extremely difficult to stop the weight creep when 95% of your muscles aren’t enervated and you can’t move.
And so I diet. I have Paleo’ed. I have Whole 30’ed. I have gone vegetarian. I have gone high protein. I have stopped eating carbs. I have stopped eating sugar. I have given up alcohol. You name it, I have tried it. Do you know how hard it is for a metrics person like me to follow a restrictive diet without being able to measure and quantify results? And yet for 4+ years I have not been able to weigh myself for lack of a wheelchair scale. Like all other disability-related equipment, wheelchair scales are crazy expensive. And none of my doctors’ offices have one.
This may not sound like a big deal, but in reality it represents both a huge gap in care for the disabled and an Americans With Disabilities Act violation. The Department of Justice and the Department of Health and Human Services has issued a guide for medical providers explaining what accommodations that health care providers must make for patients with mobility disabilities:
Part IV of the guide states:
“A patient’s weight is essential medical information used for diagnostics and treatment. Too often, individuals who use wheelchairs are not weighed at the doctor’s office or hospital, even though patients without disabilities are routinely weighed, because the provider does not have a scale that can accommodate a wheelchair. Medical providers should have an accessible scale with a platform large enough to fit a wheelchair, and with a high weight capacity for weighing an individual while seated in his or her wheelchair. Other options may include a scale integrated into a patient lift, hospital bed, or exam table.”
Despite providing a copy of this guidance to all of my treating physicians over the past several years, none of them have acquired a wheelchair scale. Not even my physiatrist (my paralysis doctor). Which again raises the sticky wicket of how to obtain appropriate health care when you are disabled. The ADA only offers the option to sue for enforcement or report the infraction to the Department of Justice and hope that they do something about it.
Even though the ADA prevents doctors from discriminating against disabled patients, realistically, there are only so many physicians who will agree to treat paralyzed patients like myself. Whittle that pool down to those that my insurance will actually pay for, and narrow that list still further to those that are accepting new patients. I live in a relatively major metropolitan area of around 2 million people, but my city only has a handful of spinal cord injury doctors. Several times when seeking out a new doctor, I have been turned away because the physicians office is not accessible, despite all of the ADA requirements for physicians’ offices. And when you can find a doctor to treat you, threatening to sue them because their office isn’t up to ADA requirements doesn’t exactly foster a positive doctor-patient relationship. A topic for another blog post. Back to my weight problem.
After more than 4 years of wishing for access to a wheelchair scale, I finally gave in this spring and bought a Brecknell industrial scale for around $600. Which is an insane amount of money to spend to find out how much one weighs. But it was the cheapest option I found that could handle the weight of my heavy power chair. A few months later, a Google search reveals a few other scales now advertised as wheelchair scales for around the same price. Which I suppose is at least a positive change considering that all the wheelchair scales I found online this spring averaged around $2000. Knowing that I get weighed in my chair on a scale intended for drums of chemicals or manufacturing materials is a bit weird. But at least I know my number now. My number is depressing. Now to figure out how to lose all this weight when 95% of my body cannot move . . .