It all started when…
My sister Emily started to slowly show less interest in her soccer team, skiing, hiking, and her middle school cross country team. Gradually she had a harder time climbing the stairs. It was a very gradual change, not enough to notice something was wrong, but just enough to make you wonder, “Hmm, why does she always use the railing to go up the stairs when most 14-year-olds leap up stairs?”
After about a year of uncertainty and testing, Emily got a genetic test that confirmed she had a rare genetic, muscular disease called, Spinal Muscular Atrophy, SMA for short. SMA is a cousin disease to ALS, the disease that took the late Stephen Hawking.
The doctors gave Emily a 10-year estimate until she would need a wheelchair and that is exactly how much time it took.
Year by year Emily grew weaker. Walking up stairs went from slow, to very difficult, to literally impossible.
In 2015 Emily moved into an apartment with me in New York City and that same year her neurologist finally told her that it was time for a wheelchair. It was a crushing realization and transition to say the least.
New York City is difficult at first for everyone who moves there, but I never imagined how much more difficult it would be with a wheelchair. Almost every restaurant is one step out of reach. The subway is literally impossible, so you have to order special handicapped taxies, which take an hour to arrive.
What I started to notice, apart from the obvious physical difficulty, was that handicapped life was so much more expensive. Whatever laws I assumed existed to protect the handicapped don’t actually exist. I realized that everyone who is handicapped is limited not only by the obviously physical constraints, but also by cost. It costs more to do almost everything if you’re handicapped.
Fast forward to summer of 2019.
I have been to Burning Man for the last five years. It changed my life, my perspective on the world, my network, my creative pathways, etc. I have asked my sister Emily to come with me for the last few years and she’s always been apprehensive due to the obvious fear of logistics and reliability. But this year she finally said YES!
It is finally time for Emily to experience Burning Man!
Like everything in life, Burning Man is more expensive for her because she can’t just buy a $100 Walmart bike, a $50 camping tent, $20 worth of thrift store leotards, show up and see what happens. She needs a handicapped accessible RV, and a wheelchair alternative. Her ($10,000) wheelchair is not designed for sand and would surely break.
So we consulted many of our Burner friends and decided that a three-wheeled electric bike would be the cheapest, most independent option for Emily. We bought the electric bike on Amazon and we are going to replace the bike seat with a more stable seat with a back rest and arm rails so that she can sit comfortably without sliding off. We haven’t finished the seat retrofitting project, but all-total the bike and handicapped seat attachment will cost about $3,000.
This journey to bring my handicapped sister to Burning Man made us both realize that although it is a challenge, it’s not impossible. With the resourceful help of friends and humans of the internet with clever ideas, anything is possible.
So we have decided that we want to use this first year as our experiment, or “prototype” to test and see if we can raise enough money for the bike that she’ll need to ride around like everyone else.
This fundraiser will be the first of many to come in an on-going effort and foundation to help give courage, logistical help, and resources to bring handicapped people to challenging locations. We are creating this fundraiser as a model to show that the handicapped can experience festivals and trips like the rest of us.
We are creating MAGIC SPACESHIP to be a vehicle to help handicapped dreamers go to places they never thought possible.
HOW YOU CAN HELP:
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