The Revolution Will Not Be Paralyzed

Last week’s trip to DC was our shortest yet, but we packed quite a bit into those four days in terms of advocacy, growth, and memories made. Being my third year at the ROCH, I wasn’t as awed by the idea that I was about to be rolling through House, Senate, and Capitol buildings. Granted, not being distracted by the chaos of broken wheelchairs and lost luggage like the previous years helped me retain a little more of the education I received the day prior, so I was ready to take The Hill with my paralyzed tribe on Tuesday morning.

We caught a curveball, however, when we rolled in to Congressman Denny Heck’s office for our first scheduled visit and saw the breaking news about the Supreme Court upholding President Trump’s ridiculous travel ban. It’s interesting (and slightly embarrassing) how the gravity of news seems to hold more weight when it’s happening while I am in town. Such was the case on the final day of last year’s Roll when a left-wing nut job opened fire on Republican Congress members during a baseball practice for a charity event, seriously wounding Louisiana Representative and Majority Whip Steve Scalise of Louisiana. The whole ordeal cast a surreal shadow on the visit for me because it showed how idealism can easily be shattered by a senseless act, and here I was again watching history unfold, and feeling frustrated that there wasn’t much I could do about it.

The notion that that decision will somehow keep us safe is preposterous. Policies like this and the recent separating of refugees and their children give credence to those who say we are a country of xenophobic hypocrites who fail to recognize that a decent majority of our latest terrorist threats haven’t been of the vaguely browner people outside our borders, but a bunch of homegrown, crazy white dudes like the one who shot Scalise.

It definitely gave me a bit of a sour taste in my mouth as we kicked the day off, but I felt a little bit of relief as I bounced from office to office with my fellow advocates. Unlike the 36 years prior to my first participation on the hill, I could find solace in the fact that I was doing my part to affect a small amount of change in the areas I have experience. Since I’ve been going to DC, it has taken two years of collective advocacy to ensure Medicaid coverage of specialty medical equipment like the cushion that saved my life for power wheelchair users, and we were another year in to the fight for those in manual chairs while also trying to protect ADA rights and make our long-overdue case for accessible air travel.

As anticipated, it was awesome for Claire and me to be joined by Ian and Teena on our Hill visits. Because our stories and platforms are just different enough to counterbalance one another, we fell into a comfortable give-and-take right away. Having Teena and Claire’s perspectives as a mother of a quad and wife/OT practitioner, respectively, rounded out a robust representation of our local community’s issues. Add in a couple of heavy hitters in United Spinal board members Andy Hicks and Wendell Matas, and we had quite a formidable group of advocates.

In total, we made five visits on Tuesday, three together plus solo visits to our respective district representatives’ offices. The cool part for me was seeing familiar faces from Hill visits of ROCHs-past, which meant the dialogue had already been opened somewhat. I’m learning it’s all about fostering relationships with the people who can help affect change. For the most part we were preaching to the choir on each visit, which, on the one hand, is comforting to know you have allies, but it would’ve been nice to try and sway some of of those in opposition. All in all, it was a fantastic day with a lively group.

After a quick jaunt around the Capitol and Supreme Court buildings, we reunited with the rest of our peers that evening at a Congressional award ceremony to highlight a few key players’ accomplishments from the past year.  First up was Gretchelle Dilan, an advocate from Puerto Rico who Claire and I had met last year and spent some time with doing a flash mob for inclusive dance just a few months before hurricanes Maria and Irma laid waste to her community. Proving that sometimes The Path finds you, she stepped up and worked endlessly to help people with disabilities on the island get the services and equipment they desperately needed. Her acceptance speech for the 2018 Outstanding Community Service Award was a fierce call to action for us all to constantly push for those who need help.

Next came Earle Powdrell, an aerospace engineer whose brain stem stroke in 2009 rendered him a locked-in quadriplegic, leaving him only the ability to blink and move his eyes. Despite that, he manages to use a computer with a TOBII eye-tracker to communicate, delivering brilliant speeches to encourage others to never give up hope. For their relentless efforts on the national stage since the ROCH began seven years ago, he and his spunky and dedicated wife of almost four decades, Kathy, received the 2018 Finn Bullers Advocates of the Year Award. Their acceptance speech was a reminder that we are only as paralyzed as we think, that our voices can be powerful agents of change.

After the ceremony, a large group of us made our way over to Union Station to grab dinner and chat. I’ve always enjoyed my Congressional visits, but the opportunity to connect with peers from all over has always been my favorite part of the event, and it’s the reason I keep coming back year after year. Getting to hear about all of the projects they are working on in their home states always gets me charged up with ideas for things to incorporate back home.

The evening ended with a two-mile haul back to our hotels which shouldn’t have been a problem for the brand-new batteries in my backup chair, but Life decided to make things interesting. We played a fascinating game of late night wheelchair Tetris inside the Metro elevators to expedite the trip, but it wasn’t enough to get me back under my own power, and Mama Dreads & The Mrs. graciously pushed me the last third of a mile up the hill Homewood Suites was perched on that Ian later dubbed Mount Muthaf*cka in their honor.

The next morning featured “coffee” with Sen. Patty Murray, which was more of a photo opportunity with 100 or so other Washingtonians with a pot of coffee in the corner. One perk was having all of her policy staff present when we each had the opportunity to share who we were, and why we were there. After all the introductions were made, her transportation specialist made a beeline toward me to talk more about my thoughts on air travel.

After that we headed back to the hotel to pack our bags and charge my batteries for a trip down through a couple of my favorite monuments. Claire and I made a late night mad dash through the Martin Luther King and Franklin D Roosevelt memorials a year ago, but I wanted to experience them to their fullest extent with Ian and Teena because he and his mom have played such a major role in my evolution as an advocate. Our friendship goes back six years to him calling me an idiot in the nicest way possible, and that exchange led to the formation of The Here and Now Project.

Both MLK and FDR before him were major cogs in a social justice machine that we are still pushing forward through our own efforts and being surrounded history helped to remind us of the bigger picture. As we cruised around snapping photos of our favorite quotes, I couldn’t help but get the feeling that our elected officials could benefit from a field trip through their own backyard to remind themselves of the ideals this country was founded on.

One of my favorite features at Roosevelt’s memorial is a bronze statue of him in his wheelchair with a quote from his wife Eleanor engraved on the wall behind it that says “Franklin’s illness…gave him strength and courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons – infinite patience and never ending persistence.” There’s a vein of that strength, courage, patience, and persistence in Ian, myself, and all our paralyzed peers, so we snapped a picture of us knee-to-knee with our paralyzed forefather to recognize the considerable impact one paralyzed person can have.

We made our way back to the airport without needing to push me, and it was all wrapping up to be a phenomenal trip… Until the after flight home, that is, when Ian’s chair came up from under the plane at SeaTac with considerable damage. Thankfully, it’s his backup chair and he was able to patch it together enough to limp home, but it could have easily been significantly worse. It’s another glaring example of what we put at risk to make the trip and advocate on that very issue. That is three chairs damaged in three consecutive trips to DC, which is unacceptable.

Fortunately, I’ve been down this road plenty of times now, and know that this is just the beginning of a fight we will continue having for years to come until we get where we need to be. It was a good reminder that not all revolutions take the form of tidal waves, but trickles that cut slowly through granite-like opposition, and that I will have to continue to channel FDR’s special blend of vigilance if I hope to carve out another bit of equal rights for myself and those like me. With people like Claire, Ian, Teena, Wendell, Andy and so many others by my side, there is reason to be optimistic for what the future holds.

Comments

  1. Kenny, man, that was an epic write up about a special and important trip. Thanks for sharing and doing what you do!

  2. The Other Ian says:

    Great stuff as always!

  3. rick92562 says:

    Great words and an even greater story, though I wish both of you had made it back with chairs intact. I agree, Unacceptable. Great to see you in D.C. and glad it was such a good experience.

  4. Aunt Anne says:

    Wow, Kenny you (and now Claire too) are such an inspiration! So proud of you guys!!

  5. A huge thanks for your efforts. Even Sandra’s manual chair was broken in the cargo hold. The airlines did what they could to amend but it was still a great hassle. What you are doing will make a difference for many in the future!

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