The Airlines Broke My Legs… Again

Just wanted to thank everyone for the outpouring of support over the last 24 hours. It took about a million zip ties to put my chair into something passable for a seating system to get me home late last night. We were able to piece together the chair United broke last year so that I have something to drive until Alaska fixes my new one. They’ve been much better at communicating, but the results will speak for themselves. For the time being, I will have to settle for limited battery power and less safety features.

No matter what happens, this is just the beginning of a larger conversation about accessible travel that must be had. This makes TWO trashed chairs from TWO different airlines in the span of exactly one year. Because I’m paralyzed from the neck down, these chairs are more than just my legs, they are also my arms and extensions of my brain; they are how I control my telephone, access my home and run my business. In short, they are my life, and that should not be put at risk every time I want to travel and Do Life.

Everyone knows The Americans with Disabilities Act (ADA) as a seminal piece of civil rights legislation, but The Air Carrier Access Act (ACAA) predates it by four years and prohibits commercial airlines from discriminating against passengers with disabilities. The law is more than 30 years old and yet I still cannot sit in my own seat on an airplane today.

If you want to see that change, contact your elected officials and tell them to support the new Air Carrier Access Amendment Act (link), which was reintroduced just last week by Senators Tammy Baldwin (D-WI), Richard Blumenthal (D-CT), Tammy Duckworth (D-IL), Maggie Hassan (D-NH) and Ed Markey (D-MA).

If you have a similar story of an airline breaking your chair, tell them about it. If you don’t, tell them about BOTH of mine. Exhibit A & Exhibit B.

Full Circle

There is a Kierkegaard quote that says, “Life can only be understood backwards, but it must be lived forwards.” After taking a couple days to decompress from our travels, it’s time to take a look back at the last few days of this trip and see what I can learn. The first and most obvious lesson: What a difference a functioning wheelchair makes.

Having all three of my previous trips interrupted by malfunctioning and/or broken wheelchair parts, I almost didn’t know what to do with myself. Last year’s trip to Las Vegas to connect with fellow paralysis advocates from all over the country was cut short by a pair of broken motors. Of the three days we were in town, I was only able to catch the last hour and a half of the last day.

And granted, I did attend all the festivities for the Roll on Capitol Hill this summer, but you would be surprised how hard it is to focus when you can’t even control where you are going – let alone mingle and socialize with other attendees – which almost made it worse. It was like being stuck sitting at your desk while all the other kids were out playing at recess. I recognized a few faces from afar, but couldn’t play any of their reindeer games.

Thanks to the good folks at Alaska Airlines not mangling my only usable form of transportation, this conference was an infinitely more rewarding experience. I spent Thursday night at the welcome reception clumsily reconnecting faces with names whereas Saturday and Sunday were mostly devoted to a myriad of topics ranging from volunteer recruitment to fundraising to web layouts. And while I really enjoyed every one of the presentations, it was the people I could meet that was the most interesting.

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Listening to dozens of my peers speaking passionately about their various advocating efforts in their respective states, I could feel a constant buzz of inspiration simmering somewhere deep within me. Hearing about organizations that have been around for decades and others that are merely weeks into their formation was both motivating and relieving; despite my innermost fears, The Here and Now Project is on the right track, with plenty of resources I can call at a moments notice to ask for advice. Just this one picture above features representatives from Southern California, New York City, Hawaii and the good ol’ PNW.

After a brief lunch with the West Coast chapters on Sunday, the girls and I shot out to the suburbs to connect with Kevin Pine, my wrestling coach for the first half of my college career. We met his two daughters, Kennedy and Tatum, and got updates about his son Josh who is away at college, which doesn’t seem possible since it felt like only yesterday that one of my roommates and I babysat him as a toddler. Kevin whipped out a couple of photo albums from back in the day and we started retracing our time together when we stumbled upon a few photos from my very first trip to Las Vegas, triggering a few memories.

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It was the end of 1999, and I was a redshirt freshman on the CWU wrestling headed for the Cliff Keen Las Vegas Invitational, one of the toughest tournaments in the country where hundreds of malnutritioned 18-25-year-olds with mangled ears descend on Sin City to compete the first weekend of December each year. I wasn’t even supposed to be on that trip because I was second line behind my former roommate and future two-time All-American, Shaine Jamie. But, as always, Life had other plans.

I vividly remember standing over a boiling pot of water with a box of mac & cheese in my hand about to pour the noodles in when the phone rang. It was Kevin, telling me that Shaine was out and they needed me to be on weight and in Vegas the next morning. Only fellow wrestlers can understand the depth of sadness I felt as I set that blue box of noodles down, knowing that I had a decent weight cut in front of me instead of that tasty meal.

I eventually made the weight, and the team made it to Vegas. With powerhouse Division I schools like Oklahoma State, Minnesota, Arizona State and many others in attendance, our guys took quite a few beatings in that tournament, especially me. I think I was outscored 32-2 in two technical falls at the hands of athletes from West Virginia and the Air Force Academy. It wasn’t pretty. But the tournament itself was not the main part of Kevin’s plan for us. No, the more important matches were the duals against fellow Division II rivals like Colorado School of Mines and Western State Colorado the night before. He wanted us to have exposure to people working and competing at our own level. He wanted us to grow.

I learned a lot on those trips to Las Vegas and other places like Southern Oregon, Eastern Colorado, South Dakota and West Virginia. I also took a lot of beatings along the way that are only starting to make sense right now. 17 years later, I can start see the correlation in all my recent road trips to connect with a new set of teammates with wheels. You’re going to have to take your lumps no matter where you go, but you’ll be better for it in the end.

Now it’s time to get back to the grind and keep pushing for a little more growth.

 

Consistently Inconsistent

Day five started off quite similar to its counterparts from previous road trips with the whole crew nursing a bit of a hangover. I suppose it is the expected outcome from a late-night out chasing drugs earlier in the week, only there were no hazy memories of wild times with which to partially justify the feeling.

Even sleeping in a bit later than usual could not stave off the road weariness of the previous couple days. Add a dash of antibiotic anxiety when we noticed a decent skin reaction to a drug I’ve taken multiple times, and you can imagine where team morale started off this morning. In an effort to turn things around I did what any decent boss would do, I threw the pair of them off the roof. Calm down helicopter moms. They had seatbelts, see?

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The sheer terror in Nikita’s squinted eyes and the likely permanent nail marks she left on Savannah thigh turned out to be the perfect antidote for all their woes. See? Inflicting fear and pain on others. Boss of the Year! As for me, I got a boost by connecting with Mark Race, a paralysis survivor of nearly 40 years from the Northeast who we caught in the lobby just before the girls took their fall. He joined me in sadistically snickering on the rooftop as my victims team disappeared over the edge. Chair or not, he’s obviously my people.

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We filled a few vacant hours before the official kickoff of United Spinal’s event by doing very touristy Las Vegas things like hanging by the pool with scantily clad middle-aged men, managing to get lost on The Strip despite having no real destination and, ultimately, hurriedly stuffing our faces with wildly overpriced yet undernutritioned food as we raced to catch the shuttle back to the hotel in time.

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And then, of course, just like everyone of my last few chaotic trips, we came careening into our destination with all of the grace of a radioactive wrecking ball and were welcomed with open arms by people who have somehow come to accept me into the fold despite being a hot mess every time I show up. Hey, I guess I’m nothing if not consistently inconsistent.

Road Warrior

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Just a quick public service announcement for anyone on the road between Seattle and Southern California over the next couple weeks – beware of a silver Honda Odyssey ramp van (a.k.a. The Silver Bullet a.k.a. The Short Bus) with the above license plates being driven as if it were recently stolen.

Yep. It’s that time again. The open road beckons, and me, my special lady friend and The Bobbsey Twins are ready to answer the call.  15 days. 2800 miles. Four different flights into or out of three different airports for two different people. And that’s just what we have planned. Another adventure begins in a few short hours, so stay to this blog, Facebook, Instagram and your local police scanner for updates.