More fitness frustrations

Before I get too far writing this, I want to clear something up about my previous post.  My comment about 30 minutes on the recumbent bike is a personal fitness expectation not an arbitrary benchmark for physical fitness.  Every body is different, every fitness level is different and even the same body will vary depending on a bunch of factors.  As someone who has done triathlons, endurance cycling, and CrossFit, that particular workout at a low cadence and moderate gear felt like a reasonable "getting back into the gym" workout.  I apologize if anyone was offended.

This is a part 2 to the "Fitness Frustration" post from a few days ago.

As a bit of a gymrat by nature, I went back to Planet Fitness to work out.  I wanted to lift weights as I was having one of those days where I needed to feel physically strong.  I like feeling strong, I like lifting things up and putting them down, so the gym seemed like the best place to satiate this desire.

I go in, check in (and get my picture taken for my account), and head for a recumbent bike.  My plan is really just to warm up for about ten minutes to lift weights, but I get caught up reading this book that a Facebook friend/professor acquaintance suggested (for those of you curious, Too Late to Die Young: Nearly True Tales from a Life by Harriet McBryde Johnson).  I had the same leg pain & numbness as the previous day's workout, although I used the end of the chapter as my benchmark (lots of things are more bearable with a good book, in my opinion!).

I hobble off the bike and do a loop around the gym to see what equipment is available.  I'm not that fond of strength training machines as I'm 4'11" and usually have to do some strange balancing act to get them to fit right.

I go past the cable machines (something that works better for me biomechanically than the Nautilus-type machines) and they are too packed.  I'm bummed as these are the best for me as I don't have to move plates or dumbbells to a bench to modify the intensity of a workout.

At the end of my lap around the gym, I'm at the free weights.  I find a free bench, find a pair of dumbbells that I can pick up one-handed and that I know will work for all the upper body work I'm planning to do, so they're a bit too light for bench press and overhead press, a bit tough for bicep curls.  Three sets of 10-15 reps of each exercise.  No problem, lots of awesome sweat.  I have my cane perched on the bench for easy reach.  I realize that I've forgotten to do incline presses.  No worries as the bench can be set up for them...so I think.

CRASH!

Realistic battle damage on my cane

The bench slammed down from it's 45 degree incline back to its original flat position...onto my cane.  My beloved flame cane.  The cane I bought for my masters degree commencement ceremony.  My "I'm gimpy but I can still kick your ass" cane.

I set my cane on the floor, reset the bench (making sure that it was fully locked in this time).  I finished my incline rows quickly, grabbed my cane, hobbled my dumbbells back to the rack, and really took a look at the "realistic battle damage" (as my SO puts it).  Because it's damaged on the bottom part of the hook of the cane, it should still be structurally sound but it's hard to be sure because of the cracks.

Angrily, I go back to the recumbent bikes for a cooldown...which turned into more of a "let's push myself more to try to burn off this anger."  I'm thankful that I didn't get my hand slammed in the bench, especially because I use my hands to earn a living and to help me get around.  That slam very well could have broken bones in my hand.  So I push longer than I should, fueled by frustration and eventually cooling down with several pages of the book.

Back at my car, I take a closer look at the damage and take the above photo with my cell phone.  My fingers rub against some of the damage when I walk, but it should still serve me while I save up for either a replacement (probably in carbon fiber, which is more expensive) or something different that still has style...maybe a clear lucite cane (seriously, I think Fashionable Canes needs an affiliate program with all these links...or maybe just consider this my birthday wish list!).

This is still a work in progress for me, and it still makes me dream of a gym that is created through the principals of universal design.  Access to fitness opportunities, fun physical activity, and health for all!

Fitness frustration

So I've been having some mental health issues because of my inability to find fulfilling physical activity.  I'm a mover, a shaker, a wanderer, a wiggler.  I like to lift heavy things then put them down repeatedly.  I like to get my heart rate up, push my body, and just sweat.  I like to challenge myself in new and interesting ways.  Since I'm still trying to figure out what feels good both mentally and physically, I wanted to give a more traditional gym a try.  It's been a while since I've been in a traditional gym as my last gym was a CrossFit box

This gets a bit more complicated because of the varying levels of dis/ability I live with.  I need something workable on cane/crutch days and something workable when I'm wheeling.  This takes the campus rec center completely out of the running, if nothing else because there is a massive hill leading to the building wtih no handicap parking at the top of the hill.  The inside of the building is barely accessible for a number of reasons, so sadly I really don't get to utilize a facility that my student fees pay for.

My local YMCA is more accessible but is pretty expensive, even at the student rate.  Additionally, the hours are a bit terrible for a person that works and goes to school.  They also tend to get pretty darn busy, and I'm not that convinced that the free weights space is particularly wheelie friendly.

My local Planet Fitness

So after talking to a few friends, I decided to check out the local Planet Fitness.  I looked them up online and saw their rates were reasonable.  They're also open 24 hours a day, 7 days a week...something that's really great for me during the school year as I sometimes keep some odd hours when my writing and research muse grabs me by the ears.

The next step was an accessibility check.  This Planet Fitness is in a shopping center that really needs more parking, and specifically more handicap parking.  Not the gym's fault, but frustrating.  It didn't help that this was the post-work crowd that was at the gym, but I really wanted to see the place at it's potential "worst."

I hobble up to the door and find that they have automatic doors...not sure why they have them, but that can be an awesome accessibility feature no matter who you are (universal design ftw!). I limp in with my cane and am immediately greeted by several staff members.  I tell them that I want to check their gym out, they offer a tour, and we walk around.  He shows me the rows upon rows of cardio machines, which includes a ramp up to the treadmills (a bit strange IMO since they didn't have any treadmills for wheelers).  Tons of ellipticals (something I used to be able to use without much pain or nerve issues, but it's been about a year since I've tried).  A bunch of bikes, both upright and recumbent, but without enough room to park a wheelchair next to (dear fitness industry, some of us wheelers have legs that can bike if we don't have to balance!).  I'm bummed that there are no rowers or hand bikes, but those are things a lot of traditional gyms lack.


The tour continues with him telling me what each piece of equipment is...but I cut him off as he starts to tell me what a Smith machine is by telling him that I'm working on my PhD in kinesiology (want to scare a fitness professional?  Tell them that you're getting a PhD in kinesiology.  He looks shocked, but recovers quickly and he starts talking to me about the corporate philosophy of Planet Fitness as a "judgement free zone."  The free weight area might be a bit tight for wheeling, but since benches are moveable, it ought to work.

So I joined Planet Fitness.

Well, day one workout was a half hour on the recumbent bike.  It's something I don't need balance for, it's something I can get on and off without problems, and they tend to be fairly fat-friendly.  At ten minutes, my back hurt at the fracture point.  At 15 minutes, I'm starting to get electrical jolts down my legs.  At 20 minutes, the nerve pathway all the way down to my big toe is on fire.  At 25 minutes, I'm determined to finish but I'm watching the clock.  At 30 minutes, I smash the stop button, mad at myself for torturing myself, angry at my body for "failing" at a workout that ought to be one of the more spine-friendly workouts that exist.

I'm not only frustrated at the spine-issues related to the workout, but I'm frustrated because I was hoping that outdoor recumbent triking would be an option for me both for recreation and bike commuting.  I'm trying to remind myself of the bad swim workout that I had a while back that resulted in a fantastic swim the next day.  I'm trying to remind myself that failing a workout isn't really failing.  I'm also trying to tell myself that maybe I need to work up to that much biking and that maybe, just maybe I can get back on the road.

It's not the easiest road, but I'm going to keep trying.  Stay tuned...

Being geeky & disabled

My fist-sized d20

One benefit of being more visibly disabled is meeting other folks with disabilities.  This felt especially true when I volunteered for a significant chunk of time at a convention.  So CONvergence, a general science fiction and fantasy convention that is held in early July in Minnesota, ended up being this really neat place for me to interact with other geeky crips and the nerds that love us.

While I wasn't so easily pegged as disabled when I worked at the Registration table (my cane was tucked away since I didn't have to get around), I was very visible when I was on badging duty.  For those of you who might not be familiar with the term, all it means is I sat at a designated area and made sure that the people going past my station had visible and authentic con badges.  This is one of my favorite places to volunteer at a con because it means that I get to talk to a bunch of people, see tons of costumes, and contribute to the fantastic organization that runs the con.

Depending on how I was doing with pain, wobbling, and feeling my legs or feet, I was either using my flame cane or my wheelchair.  If I was hobbling it, my cane was usually in my lap (which got some great compliments or amusing comments, like "do the flames help you walk faster?").  The day that I spent most of the time on wheels, I either stayed in my chair (because I wasn't going to transfer to a less comfy chair) or transferred to a big comfy chair with my wheelchair next to me.

It was fun to talk to the other geeky gimpy people that were around.  Some folks had awesome adaptive aids, like red forearm crutches and other folks with flame canes.  One woman had her rollator dressed up as K9 from Doctor Who.  I chatted about all sorts of disability related stuff, from life as a part-time wheeler to Push Girls to WisCon (a feminist sci fi con that uses universal design) to "the best crutch tips ever" with a writer Haddyr Copley-Woods.  We both admired a compact motorized scooter that another patron was using called a Travel Scoot (it weighs less than my manual chair!).

A different person later that day who I'd badged several times commented on how people don't get that wheelchair users want to sit in something different sometimes (as I was sitting in the "badging" chair with my wheelchair next to me).  To have someone else around, even a stranger, that you can talk about how awful wheeling on carpet is, what equipment can make a smoother ride (Frog Legs suspension forks), or just kvetch about DC Comics' reboot of Oracle/Barbara Gordon and how having one less disabled superhero in the comic book world hurts...especially because there seems to be a lot of geeks with disabilities in the world.

I also learned how to navigate a dealer's room on wheels (very carefully yet assertively so I wouldn't get myself trapped...being waist-height to everyone can be rough) and discovered that the prevalence of canes-as-fashion (like in steampunk and neo-Victorian costumes) makes it so people don't realize that you're using an adaptive aid and leaning on that cane (thankfully I didn't fall the couple times this happened).  I was amazed at both the amount of disability awareness and simultaneous unawareness that seemed to be prevalent in geek-space.

In less than a month, I'll be at GenCon in Indianapolis, the biggest gaming con in the U.S. and I'll find out how my experience at a mid-size con of about 6k people translates into a 4 day event that hosts more people than my university has for a student population.  I'll also have another "flying on wheels" post about flying with Delta Airlines, and probably more griping about the TSA.  Maybe I'll have more awesome conversations with gimpy geeks while we roll dice and role play :-)

Flying with wheels, part 2

This is part 2 of a two part blog post.  To read the first piece, click here and read about some fantastic customer service!.

Our flight back home was on July 10th in the late morning, which was ideal because we would only hit the tail end of rush hour traffic from my parents' house to the airport.  Our drive was going to take a bit over an hour, not including filling up the tank on the rental car, so I made sure to give us some extra time.

We drop off our rental car early, making it to Minneapolis-St. Paul International Airport (MSP) a little shy of two hours early.  We were flying through United Airlines.  I'd checked us in online, but couldn't find any way to let them know that I'm using a wheelchair.  Because of this, we waited in line at the ticket counter to see if we needed to get a tag for my wheelchair like I did through US Airways.  While we were in line, I found out that I'd rolled through a mysterious brown substance that was not only on my tire but on my arm....thankfully it was pudding, but it's not fun to be trapped in a line with pudding on your arm (I don't have arm rests, so I have the bad habit of draping my arms on my tires).

We sat in line for a good while, grumbling about the line length and wishing I could have found information on their webpage to see how they prefer to handle wheelchairs.  We finally get to the front of the line (about thirty minutes waiting), and I tell the clerk that I've checked in online but needed to know how to best help them with my wheelchair.  He looks at me like I'm asking the dumbest question on the planet and tells me that the gate clerk will check it.

I roll away, peeved that I just waited a half an hour to get treated badly.  We get told to go over to a different checkpoint because they had a special gate for wheelchairs (because apparently I am the sum of my adaptive equipment, but that's a different story).  We zoom over to the security check, attempt to find some sort of signage that would point us to this special "wheelchair line," then get pulled out of the main line to go in a special entrance that ought to have gotten us through security.  If it was actually faster, I think we would have missed our flight in a standard line because this "special treatment" took a long while.

The "d20 of terrorism"

Once we actually got to our turn through the security gate, I asked the TSA agent if it would be faster to manually search me or to go through the machinery.  I wasn't having the best of balance days, so I figured giving them an option might make things go smoother.  So they opted for the pat-down, which was really thorough it was almost intimate (to quote someone from a Facebook group I'm on, shouting "second base! third base!" would have felt appropriate).  While it was uncomfortable and really left me standing longer than I would have with their Star Trek-like scanner, my baggage was having even more issues.  My carry-on bag had my wheelchair wheel locks and a fist-sized twenty sided die (in geek parlance, a D20).  The agent, having never seen wheel locks nor a die that was that size or shape, opened my bag to get a closer look...including a really thorough analysis of what the SO and I have dubbed the "d20 of terrorism."

United's wheelchair tag

By the time we get through security, it's past the boarding time.  Most airlines allow passengers with disabilities to board first, but now we've missed this pre-boarding.  Since the only assistance I really need is to make sure that my chair gets gate-checked without getting damaged, this isn't the worst thing in the world but is still problematic because I need to get the chair tagged for gate checking.  I roll up to the gate, tell the clerk I need to check the chair but not an aisle chair, and the poor attendant looks confused.  She eventually gets me this pink "special handling tag" that gets my name, destination, and flight number on it but without any description on it other than the preprinted "wheelchair" tag.  The clerk offers to have our carry-on luggage checked for free, which we take because my SO has been juggling almost all of our bags minus what I can strap to my chair. 

I zoom down the jetway, thanking online check-in for getting seats close to the front of the plane.  I waited for the person grabbing gate checked luggage to show him how to fold the seat back down and to tell him that the frame itself does not fold.  We board the plane without much fanfare, and have a decent (albeit slightly delayed) flight to O'Hare Airport in Chicago (ORD).

We leave the plane and have to wait in the jetway for my chair to arrive.  I really wish that the flight attendant would have done what the wonderful one would have done on our trip to MN so I wouldn't have had to wait in a horde of people for my wheelchair while wobbly.  It would have been nice to not have to try to maneuver around all the people waiting for their own checked luggage.

Once my chair arrives, I do a quick check of the chair for damage then scurry and pray that we can get to our next gate in time.  We couldn't find a clerk at the counter to ask where our next gate was or to call for a motorized cart, and we didn't spot a cart to flag down ourselves.  We frantically looked for a United arrival/departure screen, found our gate, and realized that we needed to hussle.  Thankfully O'Hare didn't have carpet in that section of the airport so we essentially ran to our next gate (with me hollering "wheelchair on your left" to keep people from either getting in our way or hitting me in the head with luggage (it happened in Charlotte, so I'm acutely aware of the hazard of being waist-height to most folks).

We find that our gate is in this strange section that is on a lower level with a somewhat hidden elevator (sometimes this is an advantage because hordes of currently able bodied folks aren't clogging the only way I can use to get to another level).  I weave through people to get to the gate and find that the flight hasn't begun boarding yet.  Hooray!  The gate attendant asks if I can climb stairs as they aren't using a jetway.  I show him the cane and say yes.  A few minutes later, we're the only ones to get pre-boarded, so we follow an employee out to the tarmac.  This employee has my SO load the wheelchair into the gate check luggage cart (a bit odd, but ok).  I climb the stairs and we get seated right by the conveyor belt that's loading luggage into the plane.

I thought it would be neat to watch our stuff get loaded into the plane (I wanted to work for an airline when I was a kid), but it ended up being a nerve-wracking experience when I saw the luggage handler with my chair.  She plops the chair half onto the conveyor, half hanging off the conveyor.  It's shifting from the belt trying to move it up while she's looking the other way having a conversation.  She eventually puts it all the way on the belt, not gently, and definitely hitting the metal side rails of the conveyor.  I cringe at the potential damage of my chair, but there's nothing I can do about it.

Thankfully the flight attendant was awesome.  She told us that she was the in-flight entertainment and would try to make the safety demonstration as entertaining as possible...and fulfilled her promise.  I was so amused that I made sure I caught her name so I would have something positive to tell United about my flight experience. 

Our flight went smoothly, and we arrived at GSO with our bodies a bit beat up from the hurry up and wait pace that flying seems to have these days.  We left the plane, waited for my chair, and got up the jetway before I took a look at my chair.  One of my handrims had a nick in it, and one of the bars underneath the chair was scuffed up.  Crap.  Since there wasn't a gate attendant to talk to, we headed to the baggage claim to get our bags.

We wait and wait, and watch our fellow passengers get their bags.  I start getting panicky as both my keys and my medications are in that bag (we weren't expecting to check them, so I didn't think anything of it).  We figure out that our bags were lost, I make sure the SO has my spare car keys, and we wait at the lost luggage counter.  Thankfully the employee was courteous (which was great since I couldn't even wait in the actual office with my wheelchair because it was too small (with a counter that was too high to see over).  She explained that we were the third group to have lost luggage from our flight from O'Hare and they would call us when the luggage was found.  I wasn't thrilled about the prospect of having to drive back to the airport when they found it, but I smiled and thanked her.

We went home and I put my SO on phone duty since I was exhausted and needed to make the last bit of pain medication last just in case the luggage would take more than a few hours to procure.  If I remember correctly, they called around 11pm saying that they found our luggage and it would be delivered between midnight and two a.m.  Since he's a night owl, staying up isn't usually a problem for him, so he waited for the delivery.  They arrived around 3am with our luggage, but I'm not sure if it was a United representative or the airport, but I'm glad that our luggage was found.

This flight was not a nightmare, but not something I'd like to repeat ever again.  I was so angry about the handling of my chair that I couldn't bring myself to calling United directly, but I am sending this link to their customer service department.  I'm afraid that if I called I would get upset with the representative about the damage to my chair, and as someone who spends most of her work hours on the phone I didn't want to get angry at someone who wasn't responsible for the damage.

Long story short, my experience with them has really made me upset.  I fly multiple times a year for both work as a scholar and trips to see family and friends across the country.  I rely on that wheelchair to give me mobility that I've lost with my spine injury, so having it damaged in transit was frightening and frustrating.

7 Reasons Why You Should Care about Universal Design, Even if You Don't Live with Disabilities

By Carl Wilkerson and Pattie Thomas

Our special thanks to Casey for letting us do a guest blog here at Adventures of a Part-Time Wheeler. We blog regularly as a couple on Psychology Today about disability and caregiving: CWD (Couples with Disabilities)

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We are embarking on a special journey this summer. We have decided to make a documentary and we are seeking help from other people to make this happen. Asking for help of this kind is a delicate task, balancing the determined with the annoying.

Big journeys come with risks. One of the risks of fundraising is the loss of friends who are offended by the request. In our society, admitting that you need help and directly asking for help can be regarded as an indication of weakness, or at the very least, tacky. We decided that this risk was worth taking because the project is important. That's how risk goes. You assess the possibilities. You ask, what is worse, the risk or not doing the project? When the answer is "the project," you take the risk.

So we have entered this with the knowledge that people will reject us and we are okay with that. Perhaps they don't have the money. Perhaps they don't believe we are the good investment to do the project. Perhaps they see the importance of this but have other priorities at the moment. Perhaps a reason that we cannot anticipate will stand in the way. That is why this is a journey and not a forgone conclusion.

But if the reason for not supporting this project is because "I'm not disabled, so why should I care?" We to offer the following for consideration.

Las Vegas stands as a case study of both the beauty and the limits of law when addressing the questions of inclusion. The Americans with Disabilities Act (1990) and its revisions, remains one of the most comprehensive and progressive pieces of legislation passed anywhere.  Yet, in a city where most of the business district has been built or refurbished since 1990, barriers to accessibility for persons using mobility assistive devices and persons who experience ambulatory difficulties remain. The question is: Why?

The answer is that more than laws are needed. People who design things need to care about a broad spectrum of users. People who finance the design of things need to understand that broad spectrum and be motivated to appeal to them. Unless that understanding exists, the barriers to inclusion happen long before a ramp is put at a dead-end door or a hallway is built too small. The barrier is stigmatization and the lack of social empathy that accompanies it.

There is an answer to this, however:

"Universal Design is the process of creating products (devices, environments, systems, and processes) which are usable by people with the widest possible range of abilities, opera ting within the widest possible range of situations (environments, conditions, and circumstances)." (Universal Design: What It Is and What It Isn't)

 Universal Design is at the heart of this project and it is something we believe EVERYONE should know about and think about.

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Here are our top 7 reasons why you should care:

7. Everyone experiences barriers in their daily lives, even if temporarily. 

When you are carrying items in from a grocery store and can't get the door opened because of the round knob or when you are pushing your kid or your friend's kid in a stroller in the mall and you can't find the elevator to get to another floor, you are experiencing a barrier. Life's circumstances create barriers. Yes for those of us who deal with pain and disabling conditions, these happen more often, but we really are on a continuum with everyone, not a separate class. Universal Design will not pick and choose which class of people to help. If a door handle is designed as a level instead of a knob, it makes life just as easy for the person carrying groceries as the person who has arthritis.

This phenomenon was seen in so-called handicapped bathrooms that now also serve families with children. The design of a larger space was intended for room for wheelchairs and scooters, but it accommodated strollers. Now many places of business advertise it as such.


6. Almost everyone will know someone who lives with a disability at some point in their lives.

The social world exists even when things are modeled as individual. Disability often is discussed in individualistic terms, but the truth is that barriers impact the friends and family who are traveling with a person living with disabilities as well as the individual. An inclusive world will make it easier to bring Grandma along to the store or the vacation. Need to enter an office building with your coworker who is a PWD, you won't have to separate from them while they take the more accessible route if you live in a universally designed world. Wouldn't it be nice to live in a world where people can go about the business of living and not have to notice differences in abilities in the middle of conversations, shopping, eating out, etc.?


5.  You have a good chance of dealing with a disability someday as well.

According to the Social Security Administration, 3 in 10 workers will suffer at least a short-term disability in their lifetimes. In 2010, 5% of the adult population between 18-34 years old had ambulatory problems according to the US Census Bureau and those numbers rise sharply in seniors with 16% of ages 65-74 and 33% of ages 75+ having ambulatory problems. That was just over 19 million people who have trouble walking in 2010 alone.

John Rawls, in his seminal book, A Theory of Justice posited that a just society would be one that was designed without knowing one's own status within that society. Because we would be ignorant of our own status, we would want a society that honors all human beings regardless of status. The question of disability fits this well because able-bodied people become other-abled all the time. So making the world fit for the most people means that if your time comes, you don't have to worry about it. You will not lose freedom in addition to the other losses you suffer as a result of injury, illness or aging.


4. An inclusive world is better for business.

If you want the most talented people to work for you, you want to sell your product to the widest market possible, or you want to have the best products and services available to you, then you should support a world that includes the most people. By arbitrarily excluding people on the basis of anything other than their skills and talents, you risk having an inferior work force, inferior product or service or limited market. Inclusion is good business because the brightest and best are not systematically prevented from offering their talents and skills to the market. This, by the way, is true with any kind of inclusion, not just physical or mental ability. Deciding to exclude people because of their appearance, their membership in a group, their affiliations, their age or their disability is simply bad business because you will never know what brilliant ideas, visionary innovations, excellent skills or well-honed skills you've missed. Opportunity cost in commerce is important.


3. 10,000 people are turning 65 every day between now and 2030.

If you are a working person and pay taxes, you pay Medicare and Social Security taxes. These are entitlements that are supposed to ensure that you have your needs taken care of as you grow older. However, something called the "old age burden" affects this greatly. The old age burden is simply the number of people who are over the age of 65 compared to the number of people who are between the ages of 20 and 64 (working age). In 2010, that ratio was 22 older folks to 100 working folks. By 2030, that ratio will be 35 to 100.

Why is this important? Less accessibility means more people living in expensive long-term care that don't really need to do so. And that means high costs that are spread through the Medicare system, thus raising taxes and endangering the retirement years of younger folks. Universal Design means old folks will be able to live in their own homes, shop in the community, continue working and live higher quality lives. That, in turn means they will be less of a burden on the rest of us.


2. You want to live a long time.

As mentioned above, your chances of experiencing ambulatory difficulties increase with age. If you plan to grow old, you should support universal design because an inclusive world is an easier world to grow old in. One of the arguments for visitable housing is something called "aging in place." Not only should you want to reduce the burden of your elders on your work life while you are young, supporting Universal Design means that an accessible world will be waiting for you when it is your turn.


1. It's the right thing to do.

Yeah, we know this is an old school argument. But the fact is, as Dr. Robert Fuller has asserted in his The Nobody Manifesto, "We are all once and future nobodies." The central principle of Universal Design is the respect of the dignity of all persons. Supporting Universal Design is the right thing to do because respecting the dignity of individuals is the right thing to do. For some of us, doing and being right is important.

The concepts of social empathy and stigmatization are sometimes hard to grasp for many. When looking at the problems of physical barriers to movement for persons who need mobility assistive devices or who are fighting invisible, but real ambulatory challenges, we have something concrete (sometimes literally) to observe. But these barriers to our dignity exist in social space as well as physical space.

Our hope for User Friendly Vegas is that we can show that respecting the dignity of others, making room for as many people as possible, is a habit of mind and heart that is sorely needed in our society. And that the practice of Universal Design is important because it infuses into the system a way of thinking and acting that can benefit every one, especially any one who faces exclusion.

We chose the name "User Friendly" because it is a design term that implies empathy. All products and systems existed in the minds of a designer before they became a reality in space and time. Designers need to understand how users will use the design. This requires empathy. A designer has to put herself or himself into the place of the user and see how they will use the design in their everyday lives. Empathy is so important to design that it is the first step in Stanford’s Institute of Design’s iterative methodology model.

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We invite you to join us on this journey. You may choose not to do so and that is something we respect. But we hope that you will make that decision for reasons other than you think this topic is not "my issue" or not important enough to support.

Our message is simple: We want "To Make the World a Nice Place to Visit." That should be true everywhere for everyone.

If you want to join us, please help us with a small donation. The number of people contributing is just as important as funding the goal amount. We want to show widespread support for this so that we can get notice from a documentary funding source like PBS or Discovery or Sundance (or others).

Flying with wheels, part 1

Clouds!

This is going to be a bit long, but I think it's important to have a detailed account of flying with a wheelchair...something I couldn't find before I made my first flight.

On July 4th, my SO and I flew from North Carolina to Minnesota to go to CONvergence and to visit my friends and family that are in the area.  It's my annual trip home, partially do to finances and partially due to my spine stuff (a holiday trip includes a 4.5 hour drive one way to visit the rest of our extended family, and flying plus that much driving would make my spine very angry, and ruin the trip for me being laid up and not able to socialize).

Anyhow, this was my first time flying with a wheelchair.  Last year's trip I flew with forearm crutches and a folding cane in my luggage.  The year prior was just with a cane.  The year before that my spine wasn't interfering with my ability to balance, so it was sans adaptive equipment.  I tried to do some research about flying with a wheelchair.  What requirements do the airlines have?  What are some tips that other wheelchair users have about flying with a chair?  What can I do to make it so my wheelchair doesn't come back to me mangled?

Most of the information I found online was about flying with a power chair or scooter, not for someone with a manual chair.  The information I found about manual chairs mostly referenced folding wheelchairs not rigid frame chairs.  With the help of some academics I know that use chairs and the bits and pieces of information I found online, I decided to just be extra early for my flight and hope for the best.

So we roll in to the GSO airport (after the longest and almost steepest ramp I've ever rolled up, sweat dripping and glasses fogging in the North Carolina heat).  I checked us in online through the US Airways webpage, but there was no place to tell them that I was a wheelchair user, so I went to the ticketing counter to ask what they needed me to do.  They had me fill out a bright green tag for my wheelchair with my name and contact info, and approximate weight of the chair.  They were kind, courteous, and professional, asked me if I wanted any assistance to get to the gate.

Getting searched from the TSA with adaptive aids is always a pain in the neck, no matter what you use it seems.  Wooden cane seems to be the least problematic, but anything metal...just expect it to get thoroughly searched.  Since I'm ambulatory, I opted to stand in the new "Advanced Imaging Technology" machine that is reminiscent of a Star Trek transporter (you have to be able to stand still, feet on designated spots, with your arms raised for about 30-45 seconds to use this).

We roll through without too much hassle and with plenty of time to just relax and get a drink.  The gate attendants double checked with me to make sure I didn't need an aisle chair, and I double checked that they realized that I have a rigid frame chair.  I rolled down the jetway (whee!), took off my seat cushion, and gave my chair to the gate checkers.

The flight attendant was amazing.  She noticed that I was dropping off a wheelchair, and when we landed in Charlotte (CLT) she made sure that we didn't get up until my chair was on the jetway.  My chair came back without a dent, scratch, or issue!  I decided to walk my chair up the jetway with my cane because of how steep it was.  We get to the gate, and the attendants asked if we wanted them to hail a motorized cart or if we needed any other assistance.  I declined as I really like moving around and exploring airports.  It also meant that I got to be naughty and use the motorized walkway when it said it wasn't recommended for wheelchairs or strollers (it was a mighty carpeted hill...not fun for a manual wheelchair user!).

We get to the gate and are just talking about nerdy things (mostly comic books, and specifically critiquing Marvel Comics going pink for the cure for the Komen Foundation).  A pair of lovely US Airways employees came up to me and asked if they could see my tickets, then checked to see if they could get us closer seats.  They did!  They also double checked if I needed an aisle chair.  They also chatted with me informally for a few minutes, showing some great customer service that I didn't expect to get (by the way, if someone at US Airways is reading...I have their names and I really think they deserve major kudos).

Boarding was much the same as in GSO, and it was again a really smooth and enjoyable flight to Minnesota. The MSP staff were just as friendly and offered assistance, which was a great change from the flights I've made with forearm crutches or a cane.  Since we didn't check baggage, we didn't have to deal with the baggage terminals.  We picked up our rental car and went on our way to the Mall of America to bum around, then to the Sofitel Bloomington (one of the overflow hotels for the convention) to get settled (it wasn't an accessible room as their only accessible rooms had one bed, and we needed two because I had a friend staying with us for the con).

Long story short, US Airways is now my favorite airline.  They treated me well, treated my equipment well, and really went the extra mile to make sure that I was treated well.  I'm so happy with the service I received that I'm sending the link to the post to their customer service email and I sincerely hope that they keep up the good work!!

Back from vacation...and what's in store for this blog!

I just got back yesterday from a lovely vacation to Minnesota (partly to visit family and partly to go to a convention called CONvergence) and I'm slowly putting together a few posts for your viewing pleasure.  Since I was flying across the country (from North Carolina to Minnesota) using a wheelchair for the first time, I have some interesting observations for you all...some pretty awesome, some not-so-much.  Another post about intersections of geekdom and cripdom, and how there seems to be (to my experience) a higher-than-average number of visibly disabled folks in various areas of geek culture (gaming, comic books, anime, science fiction/fantasy, et al).  I might also talk a bit about cosplay and body difference (like size and disability) as either its own post or a part of the post on geeky cripdom/crippy geekdom.

One final exciting thing coming up.  Pattie Thomas of User Friendly Vegas is going to be guest blogging about her fantastic project.  She also has a GoFundMe page set up for folks who want to contribute to the project.

Expect some posts in the next couple days!

The "disabled vet transforms himself" video

Note:  This is a blog post that's been in my unfinished queue for a while, partially because I do a lot of my blogging at work during our down time (I can't watch things with sound there) and partially because I wanted to make sure I was in a good head space to see this and critique it.  Since the AMS Vans blog recently reminded me about this post, I figured that it was time to actually finish it.

There's this video that I've seen bopping around Facebook recently about a disabled veteran that "transforms" himself, goes from not being able to walk due to various impairments to being able to run at the end of the video, through the combined magic of yoga and weight loss.  I've been torn about either wanting to ignore this video as "inspiration porn" to wanting to really look at his journey from various sociocultural lenses.  So, for those of you who haven't seen the video, here it is:

Before I really critique this video however, I want to give a few caveats.  First of all, I'm not trying to belittle his journey.  It's his life, his body, and his experience, and no one can take that from him.  I'm glad he found something that he found engaging (perhaps even enjoyable) enough to keep doing.  I will also, in the name of reflexivity and feminist research techniques, state that this kind of narrative can be pretty damn annoying.  We would never have heard of this guy if his yoga journey hadn't gotten him running or have made him thin (hell, would we be seeing this story if yoga had gotten him running without the weight loss??).  Stories about disabled folks usually only pop up when we're being inspiring and "overcoming disability," doing things "in spite of" disability, or just being a supercrip. 

Anyhow, my thoughts after watching the video (as I wrote the first part of this post before watching it, just to really analyze my feelings and assumptions about what this video would be about).

The video starts out with music that is usually associated with these kinds of videos...kind of cheesy, all fanfare.  The text talks about how this fellow was unable to walk without assistive aids, had gained weight, and had been turned down by yoga teachers...except for "Diamond" Dallas Page.  He shows clips from starting his journey, showing him wobble and fall out of various yoga poses, using a chair and props to help keep him from falling.  The video progresses, showing him able to do more intense yoga poses, getting visibly smaller, eventually walking unaided and at the end running in a park.

The video's text essentially states that if he can do it, anyone can do it with enough motivation and willpower.  He lost a significant amount of weight in less than a year.  He states that he is no longer disabled by his back and knee injuries.

First of all, I want to direct you good folks to a recent post from Ragen Chastain at Dances With Fat entitled  The Tricky Dangers of Experience.  She says that "[o]ne thing that frustrates me about a lot of the discourse on the internet is many people’s assertion that their experience is (or should be, or will be) everyone’s experience, and that others should feel obligated to make major health decisions based on their experience/opinions."  She's hit it right on the head.  Just because this fellow found body transformation (both in size and ability) from yoga, doesn't mean that it would work for everyone if they just put their mind to it. I had the good fortune of finding a local yoga studio that isn't afraid to take me as a student, but my yoga practice isn't making my nerve damage reverse itself nor will it magically repair my fractured vertebra.

If it really was a matter of motivation and willpower, I would be abled.  I would be belly dancing, doing mixed martial arts and CrossFit again.  I would be running, riding my road bike, and competing in triathlons as an abled person.  I wouldn't be whining on my blog about how I can't afford adaptive sports equipment like a recumbent trike, handcycle, or a racing wheelchair (although I would still be vocal about the disparities in access to sport and physical activity for folks with disabilities).  I would be doing Olympic-style weightlifting like Sarah Robles at Pretty Strong (probably not as good as her though!  She's headed to the London 2012 Olympics!).

Finally, this whole narrative makes fat be equated with disability, and thin equated with ability.  This narrative sucks (Revolting Fatty talks about this in a recent post entitled "Me and the Model- the Social Model").  The more the OMG obesipanic continues, the more that fat bodies will be considered ill and therefore disabled, even when they aren't.  This narrative makes it seem as if all of us fat crips would magically become abled if we just got off our fat asses and lost weight.  My weight had nothing to do with breaking my L5 vertebra.  I broke it because I had spondylolisthesis, didn't know it, and kept doing awesome feats of spine flexibility while being a semi-professional belly dancer.  I was certifiably fat before the injury, and after.  I was a fit fattie. 

Congrats to this fellow on his journey, but I'm bothered when someone who has had an amazing transformation of some variety makes it seem like this is attainable for every person.  Sometimes there isn't a magic cure.

Pass/out

My cat Bela in his tree being cute

I'm sitting here at my desk at work, bopping between my normal work duties and working on a proposal for a journal.  I've forgotten my pain meds at home, so I'm trying to manage my pain non-pharmacologically.  That means alternating between a heated Bed Buddy and an ice pack, sometimes kneeling on my chair, sometimes sitting in some other strange configuration....anything that I feel might relieve pain or nerve issues, and sometimes I'm willing to attempt some pretty bizarre things to get through the eight-hour work day. 

I'm trying to not ruminate on my pain, instead looking at cute cat pictures online (so I gift you folks with one of my furkids Bela in his cat tree).  Much like my post on Cartesian dualism and chronic pain (that is in this month's Disability Blog Carnival), I'm trying to stay in my head as much as possible to survive the work day.

So I've been thinking about how the concepts of "passing" and "coming out" relate to disability.  Am I passing as abled today, with my fidgeting, my shorter-than-usual fuse, the feeling that I could burst into tears at any moment from the pain, from getting up every hour to either heat the Bed Buddy or to use an ice pack? I'm limping every time I get up.  Does it matter if I'm passing as abled?  Do I want to pass and what are the consequences of passing?

By not passing, am I in essence coming out as disabled through my actions?  I use a cane when walking to my office, but since my office is set up with narrow hallways and lots of walls, I generally just keep a hand open and ready to catch me when I lose my balance on the better days, or I'll keep a hand (or shoulder) dragging against the walls on tougher days.  I've started coming out as a part time wheelchair user because it may be relevant when the academic year starts up and I need to be bopping from building to building with some semblance of efficiency.  I'm coming out to try to control the questions people ask about my body and my situation.

Coming out is hard, and it doesn't matter if it's related to sexuality or disability.  As a person who identifies as queer, I've experienced so many similarities yet so many differences in the coming out process for both identities/lived realities.  Some folks consider both to be malleable and within one's personal control.  Sometimes these identities are dependent on context.  Sometimes they are both looked down upon, despised, reviled, and considered revolting.  Sometimes we're expected to pass as "normal" and within the rigid standards that society sets out for us.

Sometimes passing hurts.  When I'm passing as abled, I get complimented for how well I must be doing, whether or not I'm actually doing well.  When I'm using assistive devices like my cane or my wheels, I'm pitied and get well-wishers saying that they hope I get/feel better.  Right now, passing means that I might look lazy or unmotivated (which pulls in stereotypes of the fat lazy person)....but I'm really using all my energy to not crumple on the floor in a heap of tears and moans.  I'm trying to not pass/out.

A couple neat things I found recently

Since swimming has been on my mind lately, I wanted to share a couple things I found recently.  The first page is entitled "Plus-Size Swimmers Find Support Making Waves" (it's an audio file).  The fabulous Dr. Linda Bacon was interviewed for it.

Another page is Fat Swimming.  They say that they are a "site was created by fat folks who love to swim, for fat swimmers and our friends and allies. The intention of this site is to celebrate our fat bodies, promote the joy of swimming and other aquatic activities, and support fat folks of all genders and abilities to find safe, accessible places to be ourselves and have a great time in the water."

Social support makes exercise more accessible to folks of all walks of life.  Seeing bodies like one's own makes a space, a place, or an activity feel more welcoming.  Thanks to everyone out there who help to make these spaces!