Elizabette Guéçamburu

@elizabette-guecamburu | contributor
Writer. Columnist. Cripply Smartass.

Getting a Power Wheelchair Covered By Insurance

When you have a rare and complex disability like spinal muscular atrophy, time can be a very precious commodity — like diamonds, Labradoodle puppies or a really good Wi-Fi signal. Since many everyday tasks can take us longer to complete, like showering, eating and getting dressed, we tend to budget the rest of our time wisely and carefully. It’s an important skill to cultivate when you have a disability — otherwise you’d never get that term paper done, never balance your checkbook, and never have time to buy laundry detergent at the store. Along with these everyday tasks, life with a complex disability comes with a lot of hidden bureaucratic demands that take up time. Between filling out ongoing forms for Social Security and state services, to coordinating between various caregivers, doctors and therapists, to following up on medications and equipment, it’s a vortex of bureaucracy that often keeps our lives in motion. The time it can take to attend to this red tape is daunting. You know the hours it can take to prep and cook an entire Thanksgiving dinner? That’s a lot of time, right? Imagine having to do that several times a month — even when you’re tired, sick or just want to lay in bed and watch people get decapitated on “Game of Thrones.” That’s what it is often like for us, and we don’t even get any leftover turkey out of the deal. Recently, I’ve had an extra bundle of fun (can you sense my sarcasm?) added to my usual list of bureaucracy. This task is at the top of my list of The Most Dreaded of All Tasks. In fact, I daresay it is the veritable Mount Everest of tasks a person like me must climb. And I don’t say this lightly because I literally can’t climb anything at all. It’s the Trying-to-Get-a-New-Power-Wheelchair-Vortex-of-Hell. Sure, it might sound exciting to get a new custom power wheelchair — to get a bright shiny new model with fancy features and leather upholstery that smells like a pretentious Italian shoe. But a new wheelchair ain’t a Prius, even though it can cost as much. They are also not so interchangeable as to be simply a matter of budget, taste and style. As I’ve written on The Mighty before, these wheelchairs are built to our specific measurements and our medical needs. They are designed to maximize independence and health. They are the very tool of life. And when you have a complex disability like SMA, a small change in a wheelchair design or an error in a measurement for the seating can mean the difference between sitting comfortably and having a pressure sore on your buttocks. It can mean the difference between being able to drink a glass of water independently and not being able to reach the table at all. So a lot can ride on these devices and making sure they fit appropriately. That’s a lot of stress — and a lot to add to our already-busy plates. So, it’s not surprising that people with disabilities are often not eager to get a new wheelchair when we’ve still got one that works well. But as time goes on, it can become difficult to get parts and do repairs. Plus I can’t speak for every disabled person, but I’d rather not go too long with a decrepit wheelchair that’s only held together by loose wiring, duct tape and human stubbornness. I think we’ve got enough of that in the White House. Every seven or eight years, I begin this process anew. Given the price tags on these custom wheelchairs, insurance companies don’t make it easy to qualify for coverage. People with disabilities must jump through many hoops to get a power wheelchair. This is ironic because most of us who need these devices literally can’t jump at all. First, my doctor must reestablish my need for a power wheelchair and reverify my disability — despite the fact that I’ve been this way for 37 years. It’s as if they think my genetic condition is going to suddenly disappear into thin air like Lori Loughlin’s career. Second, I must be seen by a special neuro-physical therapist who will do a head-to-toe functional assessment — which must corroborate my doctor’s findings and include an analysis of whether my mental state is good enough to operate a wheelchair without driving myself off a cliff. After that, my doctor has to verify the special neuro-physical therapist’s evaluation and ensure it’s in full agreement with his recommendations. He then sends it all to the DME company, which is in charge of fitting me for the new wheelchair and making sure it’s functional. I’m fortunate that I have a long and positive relationship with my local DME (durable medical equipment) provider, Alan. He has been very accommodating and helpful to me over the years. He’s put up with my tears of frustration, my harassing phone calls, and my complaints about how ugly all their wheelchair paint color options actually are. Insurance companies don’t make this process easy for DME providers, either. To be frank, they make it a giant pain in the ass, which has driven many DME companies out of business, which in turn makes it hard for disabled folks like me to get our rickety wheelchairs repaired or replaced. It’s the red tape nightmare that just keeps on giving, like a bad case of shingles. Anyway, Alan came over a few days ago and we came up with an initial plan for my new wheelchair. This plan basically consisted of me pleading desperately: “Alan, make the new chair exactly the same as this chair. Seriously. Like not even a centimeter difference. OK? You know the old fable, ‘The Princess and the Pea?’ I am the Princess. Trust me, I will know if there’s a pea under the mattress. I’m not kidding. There will be no pea in this wheelchair!” Realizing I sounded slightly over-the-top, I coughed and added: “By the way, would you like a cup of coffee? Perhaps you might need it now.” It’s now up to Alan and his team to gather all his notes, the paperwork from my doctor, the assessment from physical therapist, and combine it all together to submit for insurance approval. Every “T” must be crossed, and every “i” must be dotted. If it isn’t, I will have to begin the process again — the idea of which makes me want to cry. Here’s hoping the duct tape will hold out until then.

Disability and the Right to Privacy

Privacy is something most people take for granted. It’s an assumed right, one that seems unassailable. A given. After all, most folks have no reason to doubt that they can use the bathroom without someone monitoring them, make their own life decisions without someone trying to influence their choices, and do something as simple as eat in a restaurant without someone filming them and posting it online. But, for a disabled child (or adult), these rights aren’t a given. The fundamental liberty of human autonomy is often denied to those like me. Since so many of us are dependent upon family members or caregivers to assist us in our daily lives, our hold on independence is a tenuous one. It’s very easy for even the most well-meaning of people to adopt paternalistic attitudes towards disabled people. They think by virtue of their able-bodiedness, they somehow know what is best, and by assisting someone with a disability, they claim ownership of that person’s life — that person’s story. A few years ago, a news article and video went viral about a fast food employee assisting a disabled man with his meal. The wheelchair-using man entered the chain restaurant on his own, ordered his food and asked the cashier if he would help him with his meal. The cashier agreed. Using a smartphone, a bystander filmed the disabled man eating and posted it on the Internet. It went viral and was all over the news — with people calling for the fast food employee to receive a raise and an award for his community service. When I saw this news story, I felt the red-faced-and-blood-pumping kind of anger. It was a classic example of what we in the disabled community call “inspiration porn.” You know those news stories that praise an able-bodied person for asking a disabled classmate to prom? That’s inspiration porn. The focus is on the goodness of the able-bodied person — not the disabled person’s life or perspective. No one asked the disabled person at that fast food restaurant how he truly felt in that situation. How it felt to have his privacy violated in such a way. To be forced to ask a total stranger for assistance with his meal. No one asked why he didn’t have services that would allow him to have a trusted caregiver of his choosing to be there to help him. When the news media did deign to mention the disabled man, they said they contacted him and that he was grateful for the employee’s help. But what else was he supposed to say? They wanted to hear that the disabled man was grateful because it fulfills the requirement for a great piece of inspiration porn. Inspiration porn is contingent on our gratitude. We need to be grateful to the able-bodied for assistance. Grateful to society for helping us. And grateful for life itself. But that much gratitude is hard and exhausting to maintain. This isn’t to say disabled people aren’t grateful. We understand that we receive and need assistance from others — and we are thankful and appreciative of it. That’s for damn sure. But the expectation of endless gratitude isn’t fair, either. With situations like this happening every day, it is understandable why it can very difficult for disabled people to assert their autonomy — after all, when you are dependent upon someone else for your very survival, the balance of power tips decidedly in the opposite direction. This isn’t to say that all disabled folks lack independence or autonomy. Many of us do have it, but the numbers are far fewer than they should be. When we do manage to achieve fragments of privacy, it’s hard-fought and not easily earned. It takes a diligence that quite frankly can be exhausting. When I was young, I was fiercely private. I was well aware that I was different than everyone else, so I was especially sensitive to encroachments on what I perceived to be the remnants of my autonomy. It’s normal for all parents, especially parents of a disabled child, to seek advice or vent about the stresses involved in caring for their child. It’s important for parents to have this healthy outlet. But when I caught my mother discussing me with other people, I would grow angry. I had little tolerance for my private matters being discussed without either my participation or my permission. These rare instances were probably the only times that I visibly displayed my anger and actually articulated why I was upset. It was tough for me to do that. When you’re so dependent upon others for help, it can breed a “need-to-please” mentality that is hard to break. I didn’t like confrontation and I didn’t like to disappoint others. So I would often swallow my frustrations for the sake of others’ comfort. I was fortunate, though — my mom was probably more sensitive to my need for privacy than most parents. I am so thankful that I escaped childhood and adolescence before the advent of social media and smartphones. I’ve witnessed parents on Facebook oversharing details of their children’s lives to 487 of their closest friends. Details that, if I had been their child, I would have been mortified to know had been made public. While most of these parents have able-bodied children, I’ve seen parents of disabled children do the same thing. I’ve seen parents posting photos of their disabled kids on blogs, Facebook, and other online public forums with graphic photos, videos and details about their medical condition, progress and other deeply personal things. While it’s understandable to seek support and guidance, be careful where you look for it. Find a private space, or a support group. Your 487 social media friends are people your child will perhaps interact with for the rest of their lives. Is it fair to your child if you disclose such personal and private information to people the child may see on a regular basis? Just because you are their parent, that doesn’t mean you own their story. Or that it is your right to share that story with others. Rather, raise them to be strong and independent — so one day they will be the ones to choose how, when and if they wish to share their journey. Teach them to safeguard their privacy and autonomy like the treasure it is. Back when I was in high school, there were two aides available to me when I needed to use the restroom. We had a set time that we’d meet at the modified portable restroom on campus. Once inside, we’d lock the door to prevent any students from entering when I was using it. The aides used the Hoyer lift to transfer me safely from my wheelchair to use the toilet. This lifting device has a small hydraulic hoist that attaches to a fabric sling I always sit upon. It’s an easy and secure way to help me move about. During these times in the school bathroom, the aides and I would chat about our days and discuss various things — like how to place a maxi-pad on a pair of underwear to minimize leakage. Or how fast their adorable children were growing and how they’d soon be in high school like me. Or how it wasn’t weird that while sitting on the toilet, I liked to multi-task by eating a bologna sandwich. One day during my freshman year, while in the middle of this bathroom routine, there was a heavy, authoritative knock at the door. Thinking it was a disgruntled student wanting to use this particular bathroom, we ignored it. But, the knock sounded again — impatient and eager. Then, an adult voice called from outside, “Let us in.” It wasn’t a question, it was a demand. One of the aides quickly went to follow the request. When she opened the door, I frantically called out, “Who is that? Don’t let them in!” In the Hoyer Lift, I felt vulnerable and exposed and didn’t want anyone to see me. I grew panicked. I heard strange, female voices try to push into the door, “We’ve come from the county education office. We’re here to observe.” Thinking nothing of this request, the aide began to back away from the door to let them in. “Wait!” I squeaked. Observe me? I wasn’t a specimen in a laboratory. I wasn’t an animal at the zoo. I wasn’t a fucking orangutan. I would not be observed. Like a tidal wave, I felt the anger rising that I only felt when my autonomy was threatened, “Why are you here?” “We need to observe this for our records. We’ve come from the county.” These words were said in a way that made it clear they thought they were entitled to watch me empty my bladder. That my using the restroom was a matter for public record and review. Like a damn Senate Hearing on the environmental impact of cherry-flavored Kool-Aid packets on spawning salmon. “Would you want to be watched while you are going to the bathroom?” The vulnerability of my position made tears tingle the tops of my eyelids. But, I would not cry. I wouldn’t. I took a deep breath, “Why didn’t you ask my permission beforehand?” My question seemed to perplex them, as if the thought had never, ever occurred to them. And that upset me the most. Why would they need to ask permission? I was under the care of the county office of education, why would they need to bother? After all, they were the experts on what was best for me. Silence echoed in the bathroom, and I felt the scent of industrial toilet bowl cleaner tingle my nose. “So… can we?” one of the women ventured, desperate to not waste the 40-minute drive to the school. Probably eager to get this done so she could tackle the foot-high stack of other student files on her desk. “No,” I said, emotion creeping into my voice. Seeing the moisture shimmering in my eyes, the other aide straightened her back and stepped around the Hoyer Lift to the door. Her normally friendly voice was clipped and short, “OK, we’re done here. Do it another time. Goodbye.” After the door clanked shut, I did my best to not cry — my usual emotional reaction when I was upset. I clenched my abdominal muscles and pushed the tears away. I let anger flood in, “How dare they assume I’d be OK with that? Without asking me first? And they drove 40 minutes from the county office without informing me?” I went on with my day and tried to not think about what had transpired. Embarrassed, I didn’t tell a soul, especially my friends. I wanted to fit in and be “normal” — and what teenager gets observed while she’s taking a shit? Upon their dismissal from the restroom, one of the ladies from the county called my mother at home in an attempt to head off any potential issues. They informed her what had transpired and apologized if they had upset me. My mom replied, “It seems to me that you are talking to the wrong person. My daughter is the one who should have the apology. Frankly, if you had spoken to her to begin with, all of this could have been avoided.” Later that day, I was pulled out of sixth period, and in the alcove outside the door, a lady from the county office began, “We’re sorry about what happened. It was our fault. We called your mom and she told us to talk to you directly.” I wanted to burrow into the dirt by the pine tree a few yards away. I could hear the rustling crackle of the breeze slipping through the pine needles from that tree. Like that breeze, I feared her words would drift inside the classroom where the other students could hear them. And then what would they think? I wanted to get the apology over… as quickly as possible. I rushed out, “Just never do anything like that again. To any student. Just because someone is disabled, that doesn’t mean we don’t have the right to make decisions for ourselves. We deserve privacy too.” “O—OK. Yes,” she agreed. “D—do you want to talk about this more? We can go somewhere to talk?” I had no interest in discussing it further. Feeling my face flame in embarrassment, I shook my head, “No. No, I’m done. I need to get back to class.” “All right,” she added, “Again, I’m very sorry.” I shrugged it off and said a hasty goodbye. When I entered the classroom, I cast a quick eye around to see if anyone had noticed anything. Lucky for my frayed nerves, no one seemed to be giving me much thought. I felt the heat in my face cool and I eagerly got back to my worksheets. I never saw that woman again. And no one from the county office attempted to observe me from that day forward. Privacy? If only it were so simple.

Surviving a Power Wheelchair Breakdown

I really wish this was an article about the government shutdown. It would be a lot more satisfying to spend the next 1200-odd words comparing members of Congress to the small, misshapen toadstools you find in the pond next to a toxic waste dump. I mean, they can’t expect us to praise them for failing to do their actual job, right? Last time I checked, if a person couldn’t demonstrate any real skill or talent, they’d get fired. (This rule doesn’t seem to apply to Kardashians, or other reality television stars — including Donald Trump.) No, this isn’t about a government shutdown. Rather, this is about another shutdown of a far more frightening sort. The kind that makes your hair turn white and causes you to question your own mortality. Yes, it’s a wheelchair shutdown. I have one of those custom motorized wheelchairs — the kind with oodles of special features designed to maximize my comfort, independence and mobility. This thing has a personalized seating system, a reclining feature, and six tires that allow me to turn in a small enough space to fit at least four or five Olsen twins. This is handy so I can get into smaller areas like a bathroom or a pantry, where I can grab a box of Cheez-Its without waiting for someone to do it for me. Anything that makes it easier for me to grab food to stuff into my face is a huge, valued part of my life. Anyway, these wheelchairs are designed specifically for each patient. From the dimensions of the seating system to the height off the ground — it’s all perfectly designed to me. In fact, even the NASA-inspired honeycomb seat cushion is created to fit my buttocks. It’s like a designer Gucci purse for my ass. While this may sound extravagant to some, if you had to spend 12 hours a day sitting in one chair, it had better be amazing. Not some piece of s*** you bought at a garage sale. These specialized chairs are not interchangeable. If something goes wrong with my wheelchair, I’m majorly… well… f***ed. I can’t borrow a wheelchair to use until mine gets fixed. There’s no Hertz Rent-A-Car for custom wheelchairs. I think you can sense where I am going with this, right? A couple of weeks ago, a fault message appeared on the screen of my joystick — “Right Motor Fault.” I had just gotten into my chair and the morning had been bright with promise. I had a caramel vanilla coffee waiting for me and a whole list of things planned for my day. It was going to be great. The kind of day where I accomplished a lot of paperwork, yet still had time to make a pot of chicken noodle soup and watch two or three episodes of “The Crown” on Netflix. Yeah, it was supposed to be that kind of day. But upon seeing that error message on the screen, my mood immediately plummeted. It went from great day to my life is over. You see, my chair would not move. Heart pounding, my mind began to race. I turned off the power, let the wheelchair sit for a moment, and took three deep breaths so I wouldn’t hyperventilate. Then, I tried the chair again. This time, the motors activated and moved. While you may think I was ecstatic, relieved, joyous, I decidedly was not. My relief was measured, cautious — for I knew a motor fault error was a sign of impending doom, like a meteor heading to Earth or a Black Friday sale at Best Buy. Someone, somewhere was going to get screwed over by a 60″ LCD television for $180. And that person was me. It was inevitable. This was the third set of motors I had installed on my wheelchair, even though the chair is less than seven years old. So I knew all the signs. The cheap toys in a McDonald’s Happy Meal have a longer shelf life than my s***ty motors. You’d think a manufacturer of a beautifully designed wheelchair could manage to put well-engineered motors on it, too. But no. I guess we cripples can’t be choosers. For the next couple of days, the specter of malfunction hung in the air — I knew the motor error would happen again, it was only a matter of time. So I did what any organized, thoughtful person would do. I called my local wheelchair company to give them a heads-up that sometime in the next week or so, my life was going to go down the toilet. Then I called my doctor to have him fax a prescription for “motorized wheelchair repair” to the aforementioned wheelchair company. Yes, the prescription really does say that. Who knew that prescriptions weren’t only for antibiotics and Lipitor? These repair parts take time to come in, so I knew I needed to get the order in pronto. Stat. ¡Muy rápido! I also knew there was no way in hell my current motors were going to last until their replacements arrived. And I was right. A few days later, after sporadic functionality, my chair stopped for good. “Right Motor Fault” had won. I had to be pushed around in my chair like a giant cart of bottled water at Costco. Or one of those pathetic drivers that runs out of gas and gets stranded on a freeway. I couldn’t do anything. My life stopped. You know the old saying that sailors have a potty mouth? Well, even the shadiest pirate in 1790 had nothing on me at this point. I was a bundle of anxiety and curse words. I couldn’t say one sentence without at least two to three versions of the word “f***” in it. As a verb, adjective, adverb — I’m not sure there was a part of speech I didn’t use. Then once I had exhausted myself, I called the local wheelchair company in tears a couple of times. It wasn’t pretty. Some old smart British dude once said, “Necessity is the mother of invention.” I think anger and rage are, too. After a hunt in my garage, we found an old set of motors that had been leaky (but functional). So we swapped the leaky right motor for my dead one and said a prayer to the Broken Wheelchair Gods. It worked. And the chair continued to work for another week until the new motors arrived from the s***ty motor factory in The-City-Shall-Not-Be-Named, Ohio. But that week was still pure torture. I’d get up in the morning, get into the chair and feel my heart rate go up by about 20 points before turning on the joystick. Each time the motor fault error didn’t appear felt like Christmas morning all over again. Not the Christmas morning of recent years (you know, as a boring adult), but the Christmas morning of childhood — when Santa brings you a big box of Legos or a My Little Pony with glittery purple hair. Yes, it really was that good. Now that this current crisis is behind me, though, it means that I must start thinking about the process of getting a new wheelchair sometime soon. Given how precise and perfect the seat and chair must be, you can understand how I might approach this with dread. I’m sure I’ll be writing about the process in the coming months… so stay tuned. Keep your fingers crossed that these motors don’t die first, though.