by Shane Burcaw
I desperately wanted to be on my own, but the fear of doing so kept me from exploring it.
So there I was, feeling stuck, and growing more resentful of my parents with every day that passed, even though it wasn’t their fault. There had to be a solution.
During work one day, Sarah went down to our basement to retrieve some LAMN merchandise that she needed to ship to a customer. She came upstairs and made a joke about building an office down there so she didn’t need to climb the flight of stairs every time she needed merch.
All at once, a solution to my growing misery popped into my head like a flame igniting. I almost yelled at her, “Sarah! What if I put in an elevator?!”
She was confused. “What? No. I was joking.”
But now my mind was racing. Our basement spanned the entire length of our house. It was unfinished, so we used it for storage. I’d never even been down there since the only way down was a long flight of ten steep stairs.
What if I could get an elevator installed? I could finish a room down there for myself! With a bed and couches and a desk and a TV! I could have people over without needing to walk around on eggshells! I could write in private! I could even sleep down there when my girlfriend or brother was around to take care of me overnight! It would be like my own apartment!
That idea kicked off what became a six-month process of getting an elevator and finishing my basement. It began with having a few contractors come to the house to give me quotes for the work. My parents were supportive of my basement idea, and since it was my money and eventually my room, they allowed me to deal with the contractors on my own, which was initially terrifying. Each person who came was noticeably flabbergasted to learn that I was the one having this work done, and it took a little persistence to get them to address me rather than my parents as they made comments and suggestions.
As the quotes came in, the project almost came to a permanent halt. The elevator was going to be much more expensive than I had imagined. Going into the process, I’d made a budget of what I could safely spend, and the quotes were blowing it out of the water. I became discouraged. Maybe it was just not realistic for me to be independent at that point in my life.
And then, three days before Christmas, I received a life-changing email. It was from a man named Lee Butz, who was the board chairman of a very large construction company named Alvin H. Butz, Inc. Lee had been a follower of my blog and nonprofit for a few years, and although I’d never spoken with him, I knew he was a big supporter. Lee’s email was short and sweet: “Hey Shane, I heard about your elevator budget. My company will do the project for that amount. Why? Because it makes me smile!”
Lee was giving me an incredibly generous discount, one that opened up my world and increased my independence. I will never be able to adequately thank Lee and his company, but I’m hoping this chapter serves as a permanent testimony of my appreciation.
The construction began! We selected my bedroom for the elevator shaft, so for a few weeks there was a massive hole in my floor. It worked nicely as an execution pit of death until the elevator was installed.
For a few weeks, the LAMN office (upstairs in our dining room), saw a steady stream of contractors. Each day we enjoyed new sounds while we worked: drilling, hammering, sawing, occasional cursing when mistakes were made. The lead contractor, a man named Phil, always stopped by to see how I was doing. On the last day of the project, he made a donation to our charity. Phil, love you, dude.
Looking down into the depths of hell.
My maiden journey in the elevator was exhilarating, and even emotional. The construction foreman opened the door when I arrived on the basement floor, and I exited into a place that I’d been living above for over fifteen years, but had never seen. I got teary-eyed as I drove around my basement, imagining the space I could create for myself down there.
Unfortunately, they accidentally installed a one-way elevator, so I’m stuck down here forever.
Fast-forward about a year. I’m writing this in my room in the basement, which has earned itself several names already: The Elegant Man-Cave, The Sex Dungeon, The Writing Den, and Burcaw’s Basement Resort and Lodge. Behind me, on the couch, Hannah is reading. We’re listening to jazz. The lights are soft and the room is warm. I don’t know if I could be any happier than this.
Chapter 14
San Francisco
When I was seven years old, just months before I had a massive spinal fusion surgery to correct my severely worsening scoliosis, the Make-A-Wish Foundation granted me a Wish, and with all the sage wisdom of a small child, I decided that Disney World was the one place on Earth that I needed to go.
Arrangements were made for my family to fly from Bethlehem to Orlando, and the prospect of flying in an airplane quickly became the activity that excited me most about the trip. Minnie Mouse held no weight to the thrill of soaring through the sky at a million miles per hour.
On the day of our departure, I felt like royalty when a limousine picked us up from our house, and my little brother and I were served grape juice in champagne glasses on our way to the airport. The driver called me “Sir,” and I called him “Sir” in return, letting the word roll off my tongue with grandeur. I was a king living a life of luxury.
Our local airport must have been privy to my Wish, because we were showered with Disney-themed gifts upon our arrival. We were celebrities. We were so important.
I gawked at the beautiful flight attendants, who complimented my Star Wars shirt and remarked upon my handsome good looks. They unfolded a little stroller for my parents to maneuver so that I could be wheeled on board while my wheelchair was taken below to be stored in the underbelly of the airplane. The pilot greeted me, and I was invited to check out the cockpit, a dazzling display of lights and buttons and levers and switches. By this point, I would not have been surprised if he had asked me to fly the damn plane. After all, I was no longer the regular kid I had been an hour earlier. I was big, and important, and respected.
Once Mom seat belted me into the airline chair next to her, she took a packet of Chiclets mini gum from her purse, and instructed me to chew a piece carefully upon liftoff to help with the ear popping that might occur. Normally, this warning would have terrified me, but Famous Shane Who Flies in Airplanes was not afraid of anything.
In the air, I watched the clouds pass below us with unending awe. When we landed in Orlando, a flight attendant brought me a special “Welcome to Disney” basket and asked my mom if we minded waiting in our seats while my wheelchair was brought up from below.
Many minutes passed after the rest of the passengers emptied from the cabin, but still no sign of my wheelchair. We were probably awaiting the arrival of our next limo, I assumed. Or perhaps Mickey would be welcoming us in person. Anything and everything was possible now.
Dad eventually decided enough was enough and walked to the front of the plane in search of answers. When he returned, he was red-faced. “Let’s go, we need to get off.”
“Oh, no, they told us to wait here for the chair,” my mom corrected.
Angrily, Dad said, “No, the chair is here. It’s sitting in fifty pieces at the entrance of the plane.” My stomach dropped. My chair was in pieces? Was it broken? My chair was my legs. I could not possibly do a week in Disney without my wheelchair.
In the Jetway outside the plane’s door, several stammering ground crew employees tried in vain to fit together an explanation as to why my wheelchair had been entirely disassembled. Their final answer amounted to little more than an embarrassed, “It’s protocol … we think?”
Unfortunately, and ridiculously, no one knew how to put my chair back together again. The exciting feeling of being famous and important evaporated as my dad struggled awkwardly to put my chair back together.
It took an hour, but with the assistance of the pilot, we eventually got my chair into working order and continued on our way. The fun of Disney overshadowed this negative moment, but it was still a rude awakening for my young mind. An ai
rline could destroy my wheelchair and leave me stranded, yet ultimately pay no price for the mistreatment. I didn’t know it then, but what I had just gone through was actually a disturbingly common experience for people with disabilities.
Since the passage of the Americans with Disabilities Act (ADA) in 1990, it is basically illegal to discriminate against people with disabilities. But I think many people have actually turned a blind eye to the immense societal boundaries and injustices that still exist for me and my disabilibrothers and sisters (like that?). So often, when I mention that I can’t access areas of my college because of steps, or that I can’t afford to pay caregivers, or that flying is dangerous for me, I’m met with the confused response of, “But doesn’t the ADA make that illegal?” Sometimes the answer is “Yes,” and sometimes it’s “No,” but almost every time the answer is, “It doesn’t really matter. It’s still happening.” People don’t realize that the ADA did not immediately make the world a perfect place for people with disabilities. Far from it, actually.
Many years after my Disney Wish, I was establishing myself as a public speaker through Laughing at My Nightmare, Inc. Every week, Sarah and I received dozens of requests to speak all over the country, but we were forced to turn down many of the engagements that were not within driving distance. I had not flown since I was seven, and the idea of doing so felt impossible.
Airlines, although required to provide fair and equal access to their services to all people, regardless of disability, simply don’t. For instance, I am unable to sit upright unassisted in a standard airline chair, but protocol still dictates that all electric wheelchairs be stored beneath the plane. I’ve called various airlines to ask what my options are, and the two I’ve been provided are: 1) Buy six seats on the flight and travel in a hospital bed—with medical professionals required, whom I’d need to hire, or 2) Don’t fly.
Since I can’t quite afford to pay $9,000 every time I fly, option two has always been preferable.
For wheelchair users who can sit in a standard airplane seat, flying means rolling the dice on whether or not their wheelchair will be returned to them in working condition upon arriving at their destination. An unconscionable amount of the time, it does not. Electric wheelchairs are complicated and fragile and extremely expensive, but those facts don’t mean shit to airport ground crews, whose job is simply to put all luggage onto the plane as quickly as possible. I’ve spoken to dozens of individuals who braved the skies only to be told their wheelchairs had been smashed, mangled, or even lost during the flight. There are protocols for compensating victims of this type of mistreatment, but they are lengthy and impractical. How is an individual expected to effectively advocate for their justice when they land a thousand miles from home to discover that their only means of mobility has been destroyed? I read a story once of a girl who was forced to lie on her back on the plastic seats at an airport gate in Germany for several hours before her wheelchair was returned to her. Fun vacation!
So in 2015 when Laughing at My Nightmare, Inc. received a call from Genentech, a pharmaceutical company, saying they had read my book and were wondering if there was any chance I could travel to San Francisco to present to their group of SMA researchers, I explained how difficult air travel was for me. I told them I’d talk it over with my team because it sounded like an amazing opportunity, but I didn’t want to get their hopes up. Since the Disney trip when I was seven, my body had become much weaker, and I couldn’t imagine how I’d ever manage a six-hour flight with no way of sitting safely upright.
But as I discussed the opportunity with coworkers and friends, it became obvious that if I wanted to have a speaking career and continue growing Laughing At My Nightmare, Inc., I was going to have to solve the flying dilemma. And in order to do that, I needed to take some risks. So I called Genentech back: “I’m not sure how we’re going to make it happen, but I’m in.”
My coworkers and I began by tirelessly researching secrets for flying with an electric wheelchair. Sarah made many long calls to the airline to ensure that we clearly understood every detail before we left. I read countless websites and talked to dozens of individuals with SMA who had flown before. We asked my dad and my girlfriend at the time to come along and assist with the journey. Three “caregivers” may have been overkill, but I wanted to be safe rather than sorry.
We bought a child’s car seat to help me sit in the airline chair. My girlfriend customized it (like a mad scientist) so that it was actually bearable to sit in for six hours. We bought a neck brace for turbulence. Dad taught himself how to completely disassemble and reassemble my wheelchair, in case of the all-too-common damage by the airline.
Slowly it dawned on me: This was possible. It would be challenging and stressful and scary, but with enough preparation, we could at least assure ourselves that it would be (mostly) safe.
On the morning of our departure, our plane lifted off the runway, and my body was pushed against the seat back by the force of the jet engines propelling us forward. I don’t know if I’ve ever smiled as big as I did as I watched the world get small outside of the cabin window, buildings and cars becoming tiny specks of color as we floated into the clouds. I thought back to my first flight to Disney and how fancy I had felt.
Landing was just as much fun. With my dad’s arm across my chest, and Sarah’s hand on my forehead, I let out a nervous laugh as we touched down and the powerful brakes slammed us to a halt. We had made it.
There was a brief moment of terror as we watched from our window while the ground crew unloaded my chair from cargo storage below the cabin, desperately hoping they wouldn’t drop the $25,000 piece of equipment. To our collective relief, they returned my precious baby to me in one piece.
San Francisco was like a dream. In three days we did more sightseeing than I believed was humanly possible. I drove my wheelchair across the Golden Gate Bridge. We plunged down the terrifyingly steep Lombard Street. I spent an entire afternoon exploring the redwood forests just north of the city. Best of all, our presentations at Genentech went perfectly, and we made some awesome connections with their SMA team.
How many ground crew members does it take to drop a wheelchair?
When the idea for this trip first came up, I never imagined I’d be able to do it. Too many things could go wrong, I thought. There are too many opportunities for failure. Instead of listening to this overly cautious mind-set, I decided to take a rare step out of my comfort zone, and the results were life-changing. Where before I felt personally and professionally confined by the difficulties of flying with a wheelchair, this trip to San Francisco opened up my world by showing me that air travel is a real, albeit difficult, option for me.
At the same time, it’s absurd that I had to go to such lengths just to utilize a service that should easily be available to me. If fair and equal treatment under the ADA means sitting in a baby’s car seat with a belt strapped around my waist and three trained caregivers maneuvering and situating me, maybe it’s time to reevaluate what fair and equal means. Not to mention, I’m extremely privileged to have the financial resources and support network needed to pull off such an involved trip.
If you or someone you know has any sort of connection to the people who make these regulations, I’m asking you with sincerity to further explore allowing spaces for electric wheelchair users in the cabins of commercial airlines. I promise we won’t bite the other guests.
Chapter 15
Hannah and Shane Take Manhattan
My head was tipped back and my mouth was stretched open as wide as my atrophied jaw muscles allowed. Hannah was vigorously digging in the back of my mouth with her index finger. There was a chunk of onion stuck in my teeth from the meal we had just eaten at a diner in Bethlehem. She was helping me dislodge it.
This moment, I realized, was a perfect image of our relationship: absurdity, but enjoying every minute of it.
“I don’t think I can reach it. Am I moving it?” she asked, laughing.
I tried to answe
r but her finger kept me from being able to form coherent words. I gagged as she grazed my uvula.
She removed her finger from my mouth. “What if I tried to use a straw?”
“You could. It’s really not a big deal. I can just tongue at it while we drive.” As usual, I didn’t want to be a burden, but Hannah was always attempting to assuage my lifelong worry with love and patience.
She ignored me and retrieved a long purple straw from my book bag. With gentle precision, she prodded at the piece of onion stuck in the far left corner of my mouth, like a dentist on the hunt for cavities.
She was smiling. She was beautiful.
Almost immediately, she pried the onion loose and my world was returned to rightness and normalcy. I thanked her, and we laughed about it as we pulled out of the diner parking lot, not caring if the customers inside had just witnessed our unusual excavation process.
Hannah and I were going on vacation. It was early September, and the chill in the morning air—floating in the open windows as we made our way out of town—carried with it the sad feeling of our looming separation. Hannah attended college in Minnesota. We’d been dating about four months, but we already both felt that something truly special was growing between us, and that meant making the most of our precious visits. We only had a few days together before she was flying back home for what might be several months apart.
In previous relationships, teaching my girlfriend how to care for me was always a careful, gradual process. With Hannah—due partially to the lack of time together, but more because she possessed a uniquely easygoing quality that helped me open up to her—the teaching was much quicker. During her first visit, barely two months after we met online, we had the idea to create a bingo board with all the more involved “caregiving tasks” that she needed to learn. In this way, we made a game out of showering me, brushing my teeth, and other such activities. From the very beginning, she made me feel like we’d been together for years, and that sort of trust is a rare feeling.