Bob’s Wheelchair Blog

Adapting to Survive

One of the qualities that have most impressed me about the community of wheelchair users is its ingenuity. Whether it's a boom box that has been duct taped to an arm rest for impromptu surround sound or a car cup holder that has been jerry-rigged to provide 24-hour beverage availability, chair users are always coming up with novel solutions to the myriad of obstacles we face.

Like many of these solutions, my big innovation came directly out of frustration. After spending my first months cruising around town in my power chair, I had already identified the biggest problem facing me: where do I keep my valuables so I can access them and keep them safe?

At the time I was using a nifty backpack made especially for chairs that had lots of cool compartments, zippers, and doo-dads, but I always had to ask people to get stuff for me. Making things more complicated, when they did get stuff for me I usually could not see them, opening up the possibility of being robbed or losing valuables.

As I saw it, the only solution that made sense was some sort of storage unit that I could access. This limited the area for the unit to the two arm rest. A friend suggested I try a zipper pouch around the arm rest. I did, but found the zippers frustrating and the pack cumbersome. I needed something that would allow me easy access to all the assistive devices I used regularly. After much looking, I decided there were no easy solutions on the market. I resolved to invent my own solution.

I sketched out a storage unit that could be built into the arm rest itself. It resembled a glove compartment with a top that flipped to the side on hinges an a side piece that I could flip down so I could scoot out whatever I wanted.

After a few revisions I was confident I had the right design and I turned my focus to getting it built. Through a series of circumstances too complicated to retell here, I was lucky enough to find a local contractor who agreed to help me out. He made some really good suggestions on revisions and then sent me on my way.

A couple of month later, he called me back and blew me away. The piece he'd crafted was way beyond my expectations. He'd built an entirely new arm rest out of stainless steel, padded it and finished it to look like it came from the manufacturer. Ten years and two chairs later I'm still using that arm rest and honestly have no idea how I'd function without it. When I got my latest chair, my biggest prerequisite was that the arm rest could be adapted for it. Whenever I meet chair distributors or fellow users I almost always get asked where I got my arm rest.

 

Guest Blog by Ian Ruder

The New Season

It's not a coincidence that the start of baseball season is timed to sync with the start of spring. Warmer weather brings flowers, fruits and most importantly, the crack of the bat and the snap of the ball hitting the glove.

After months of rain, snow, and cold, the two new seasons coincide to provide the perfect diversion.

Five years ago, in search of such a diversion, I packed up all my gear, loaded the back of my van, and set off on a two-week drive to see America and watch as much baseball as possible. I ambitiously scheduled the trip so I could catch games in Minnesota, Milwaukee, Chicago, St. Louis, and Kansas City, all in a stretch of six days. It's the kind of trip thousands of fans make every year- the one difference being that I'm a quadriplegic in a power wheelchair.

As you might expect, that one difference ended up shaping the trip and many of my memories of what proved to be a highly unforgettable two weeks. Thanks to a lot of planning and an amazing attendant/friend who helped me, the trip surpassed all my expectations and went relatively smoothly. I saw a ton of baseball, drove thousands of miles through parts of the country I'd never seen, and learned a lot about myself, my abilities, and traveling in a chair.

I nearly melted in the historic Wrigley Field bleachers. I talked my way into prime front row seats in centerfield at Miller Park. I squeezed into the questionably proportioned (and rare) wheelchair seating at the Metrodome. I nearly melted again in a seat about a mile above New Busch Stadium. I snuck into $100 seats at an almost empty Kauffman Stadium.

By the time I got to the final game of the trip, I had become an expert on sweet-talking ushers into upgrading my wheelchair tickets, and had learned the ultimate secret to attending sporting events as a fan in-chair: standing room only tickets.

The irony is not lost on me, but trust me, standing room only tickets are the way to go for chair users. Think about it: the downside to SRO tickets for most people is that, while they guarantee admission, they don't guarantee a seat. A seat is one thing chair users never have to worry about. All we need is some space to park in, and we're set. Thankfully, space is something almost all of the new stadiums have in abundance.

Instead of spending $50-$100 on tickets in a primo section, you can often find an equally good vantage point with $10 tickets. It's slightly more complicated if you're with friends, but I've found ushers pretty receptive to letting a friend sit with me in an empty seat.

For those who would say this is taking advantage of the system, I'd probably agree. That said, the same system usually forces wheelchair users to pay premium prices for the worst seats in the section. Almost all new stadiums and arenas place chair users in the last row of the section. The result is you are the farthest person from the action, but paid the higher price to be closer.

I complained about this very setup at a game in Los Angeles last year. The ticket seller pointed to another seating option right behind the dugout. When I asked how much those tickets were, she just laughed at me. "$625," she told me in-between chuckles. I'm sure a lot of quads and power chair users have that kind of dough to shell out.

Despite the occasional seating frustration and chair-related hassle, there's still nothing in my book that tops sitting down the third base line, basking in the sun and rooting for your team for three hours. Here in Portland, Oregon we haven't had a sunny day all year and have yet to even hit 60 degrees. But with baseball season kicking off, it finally feels like spring. Wherever you are, don't let your chair, scooter (or whatever you have) stop you from enjoying the new season.  

 

Guest blog by Ian Ruder.

For the last couple of years…

it has been hard to go anywhere without hearing, reading or seeing something about the Twilight series. Seeing as I’m not a teenage girl, a fan of vampires, werewolves or poorly written fiction, I’ve done my best to avoid the films and the books. Inevitably though, I finally did stumble on one of the movies on cable. Much to my surprise, it wasn’t the cheesy dialogue or the yearning looks of abstinent teens that grated on me – it was the ridiculous portrayal of someone in a wheelchair. In one scene we meet the father of Jacob, the hunky jean shorts-clad werewolf. It turns out that despite the fact his son can turn into a werewolf, Jacob’s dad (Harry according to a fan site) is confined to a wheelchair. If they’d left it at that I’d have no complaint. But instead of leaving it alone they show someone pushing his chair to the bottom of a ridiculously steep set of stairs before turning it around as if they were going to bump him and the chair up the 50-plus stairs and into the house. Right before they start the scene cuts away, suggesting that such a herculean task was no big deal. Anyone who has ever tried bumping a wheelchair up a flight of stairs knows it is not easy and that in real life there would have been a good chance poor Jacob’s father never got into that house and wasted away in the rainy Pacific Northwest. It’s just another example of another movie or TV show failing to make an effort to accurately depict wheelchair users. With the Academy Awards fresh on my mind, I figured what better time to talk about depictions of disability on the big screen (and the small screen). I’m sure there are some people who are really bothered by poor depictions like the one in Twilight, but as long as there is no bad intent I generally find them harmless. Any wheelchair user knows that no two wheelchair users are alike, making the task of accurately portraying someone in a chair that much more difficult. Whether it’s a paralyzed character like Jake Sully in Avatar or an amputee like Lt. Dan in Forrest Gump, Hollywood has gotten pretty good at the physical representation of wheelchair users (Twilight aside). Where Hollywood still usually falls short is when it comes to depicting the mental side of being in a chair. Good actors are all about understanding what motivates a character and unsurprisingly, there is much more driving a chair user than the obvious physical limitations. Some movies focus on the depression (Monkey Shines), some go for the fearless/macho side (Murderball), many hone in on the feelings of helplessness (Rear Window). But as any chair user will tell you, there are elements of all of these and many more factors all swirling together that make up most chair users’ psyches. One movie that I think did a great job of capturing that internal maelstrom was 2004’s Saved. Macaulay Culkin plays a cynical high schooler in a chair and, as far as I’m concerned, nailed it. Who knew Kevin McCallister from Home Alone had it in him? I certainly didn’t expect it when I saw Saved the first time. Not only did I identify with Culkin’s character, but I almost forgot he wasn’t in a chair in real life. What about you? Are there any movies you think did a particularly good or bad job of showing what it's like to be in a chair? What do you look for in actors portraying chair users?

Standing (or, at least sitting) up for your rights

Last year, while I was taking part in a panel discussion about disability, one of my fellow panelists caught me off guard by definitively stating that all of the panelists, myself included, "loved our wheelchairs more than anything else". My jaw dropped as I turned to look at her with a look that I can only imagine everyone in the audience saw as somewhere between sheer disbelief and total confusion. Love my wheelchair? Are you kidding, I remember thinking. I politely explained that "love" might be too strong a word for my emotional relationship with my chair. My statement (and the puzzeled look on my face) got a laugh from the crowd, but as they were laughing I began to understand what my co-panelist was getting at. I think that what she meant is that we loved the independence that our wheelchairs provided. Without them we likely wouldn't have been able to even be at the panel, much less to work or enjoy our lives. We weren't talking about chairs in the simple sense of four-wheeled rolling devices, but highly specialized, complex contraptions that had been custom designed and then custom fitted by experts to our unique bodies to provide the most independence that was medically possible. You'll never hear me profess my love for the nuts and bolts I ride around in every day but you'll also never catch me taking it for granted.

I bring this up because as I write, the independence that wheelchair users like myself and others who depend on complex rehabilitation technology enjoy is in jeopardy. I could devote five or six posts to the full nature of the threat, but boiled down to its simplest it is as follows: access to complex rehabilitation technology like power wheelchairs and specialized manual wheelchairs is decreasing. Because of the high cost associated with providing and supporting complex rehab technology and the low rates at which providers are reimbursed by Medicare, fewer and fewer companies are providing the specialized services people who depend on such products need. Fewer providers means less access and less competition which in turn lead to lower quality service. If you live in a rural area, chances are you've already been directly impacted. Maybe the company that used to service your chair went out of business because the margins were too low. Maybe that company stayed in business but had to let go of the tech who trekked out to work with you. Either way, the new reality facing many consumers is longer waits for what is often poorer quality service. Some of the access decline can surely be attributed to the economy. By now everyone is familiar with the devastation it is capable of and the sometimes helpless feeling experienced by those in its wake.

The bright side of the decline in access to complex rehab technology (CRT) is that there is something that we, the people who depend on complex rehab technology, can do right now to help ensure that our independence isn't threatened. This February a coalition of rehab organizations and consumers (wheelchair and CRT-users) are headed to Washington, DC to get Congress to pass legislation that would create a special category under Medicare for complex rehab technology. The legislation would go a long ways towards establishing a funding model that would allow rehab companies to maintain access for those who depend on the types of complex technology that require knowledgeable service people and technicians to properly adjust and maintain. The way things are set up now, when it comes to billing and reimbursing, the more labor-intensive complex rehab technology is lumped in with products like walkers and simple chairs that require little to no configuring or expertise. This means that providers often lose money servicing CRT equipment, thus their hesitance to sometimes fully embrace the field.The people who use CRT don't just use it, they depend on it. These aren't people who you occasionally see on the news defrauding Medicare with fake disabilities. These are people, like me, who would be stuck in bed, not working or paying taxes if they didn't have their complex rehab technology.

To ensure that this doesn't happen the DC-bound coalition will be meeting with legislators and working to educate them about how important our independence is and how a simple piece of legislation could have a huge impact for so many people. Last year I had the privilege of traveling to DC and meeting with numerous representatives to spread that message. This year, many more consumer advocates will. If you're interested in participating, check out http://nrrts.org for more info. If, like me, you won't be able to go but would like to contribute, take a few minutes to read about the legislation at http://ncart.us and then consider writing, calling or trying to meet with your legislators.

I'm pretty confident that anyone who reads all the information will quickly see that this isn't a Democratic - Republican issue or a liberal - conservative issue. Honestly, it's a logical fix for an obvious problem that will cost millions of people their livelihood if it is not rectified. If you're like me, you may never love your wheelchair, but it looks pretty darn good in comparison with the prospect of not having it. Let's make sure that never happens.

Here's a video that does a good job outlining the issues (even if the opening is a little sappy): Jenny Takes on Capital Hill.

Giving Thanks to Technology

With the holidays upon us, now seems like a good time to reflect on what I am thankful for. I'm incredibly thankful for having an amazing family, a network of friends who have always supported me and the luck to be born when and where I was. Every holiday season, at some point, I think about that last part. My mind gets to wandering and I end up trying to imagine living in a wheelchair 100 years ago. No comfy cushions. No ultra-light frames. No power chairs. No ways to operate on pressure sores or treat more serious infections. You could make a pretty good argument that much, if not all, of our current understanding of "disability" is, and has been, determined by technology. How many people, myself included, would not even be alive if not for modern technology? How many people are able to function "normally" (without anyone knowing they are different) thanks to technology? I don't mean to go too deep. I'm just fascinated by the interplay between disability and technology.

I can still remember the first day my occupational therapist took me to the "computer room" to show me that despite being paralyzed, I could still use the computer. I remember how skeptical I was. After all, I could barely lift my arms, couldn't use my fingers or wrists and had trouble just sitting up for long periods of time. Discovering that the "computer room" was really a converted closet that someone had packed an outdated computer in to only reinforced my skepticism and added to my growing depression. My therapist demonstrated the latest in dictation software, a $900 program few outside the disability community had heard of. She spent an hour working with me to train my own voice profile and show me the basics. The software proved better than I'd expected but offered less control than any kid raised on computers (like me) would have expected. I remember thinking some ability to use computers is better than no ability. At the same time I felt profoundly let down that technology wasn't able to fully close the gap in functionality between where I was, physically, and where I wanted to be. A decade later that gap still exists, but I've learned to appreciate how fast it's closing. Now every computer comes with free built in dictation software that blows away the expensive software I saw that day in the closet. Just the other day I got a new phone that allows me to tap a button and flawlessly dictate e-mails and texts or to fill in any fields I want.

Maybe at some point, way after I'm dead and gone, technology will fully close the gap with some sort of cure for spinal cord injuries or a Matrix-like world where all that matters is the functioning of the brain. Honestly, those possibilities don't do much for me. I much prefer focusing on the present and the bounty of things for which I am thankful.

Happy Holidays!

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