I didn’t have a typical childhood. I was diagnosed with juvenile rheumatoid arthritis at 18 months old. My earliest memories are of hospital waiting rooms and being mesmerized by the lab technicians who took my blood with a butterfly needle every month.
My life consisted of daily physical and occupational therapy and taking new medications that doctors promised would alleviate the pain so I wouldn’t end up in a wheelchair as an adult. I missed apple picking at preschool because I was curled up on my grandmother’s living room floor, crying and screaming from the pain in my back. The day before I went in for a spinal tap, which the intern tried 12 times.
Until I was seven, I didn’t believe in magic and knew there was no such thing as a fairy grandma, but I felt damn close when the woman from the Starlight Foundation appeared in the kitchen of my parents’ suburban bungalow and promised to make my wish come true.
Courtesy of Ashley Couto
I asked for a trip to Disney World, a computer, and a meet and greet with the Backstreet Boys. Over 20 years later, I’m so glad I chose Disney World, because just a few weeks later, I became an N*SYNC fan.
I always felt like an annoyance at school because my disability needed to be “managed” and I was used to receiving looks of pity – the “you’re not like us” look I was so used to seeing because of my steroid-induced rounded face and ingrown left foot.
Courtesy of Ashley Coote
Not at Disney. From the moment I sat in my rented wheelchair, I was a Disney World VIP. I breeze through long lines to the VIP area, where I can ride rides in under five minutes. I still feel joy in my heart when I remember yelling my head off as my dad and I skipped the 90-minute line for the Tower of Terror during peak hours on my birthday.
The moment I sat in my rented wheelchair, I felt like a VIP at Disney World.
Disney World made me realize that sometimes, especially while traveling, I can let my disability be my advantage.
Courtesy of Ashley Couto
My favorite human experience is sitting in a window seat and watching the clouds below. I do everything I can to be in that situation all the time. Being able to request special assistance at the airport makes my life, and the lives of my family and friends, easier and less stressful. When we arrive, an attendant puts all our bags on a cart and takes them to the taxi rank or parking lot.
Since I request a room with a bathtub as it is good for my aching joints after a long day of travel, hotels often give me a free upgrade, which is usually a premium room.
I don’t like beaches. I like old, musty museums with no air conditioning where I can cry in front of old oil paintings. I have mobility issues and getting around these places usually involves going through secret passageways where there is additional art that can only be seen because of my disability.
Courtesy of Ashley Couto
A doctor’s certificate allows me, and often my companion, free or discounted admission to most major museums and attractions. If you are thinking of asking a doctor for a certificate, I recommend drafting one and researching disability travel regulations around the world. I use the same certificate wherever I am in the world.
When I went to Paris with my aunt earlier this year, this tip helped me save money on museum admission because most of the museums we visited were free.
Courtesy of Ashley Couto
The Louvre offers disabled visitors the unobstructed view of the Mona Lisa as possible. Instead of waiting in the always-crowded lines, you drive or walk there. A security guard will guide you to the disabled area, just a few feet ahead of the regular lines. There’s no need to rush, as it’s just you and the Mona Lisa.
Being disabled is incredibly tough. Nothing compares to having to weigh my future fertility against a breakthrough in painkillers at age 9, or being woken in the middle of a hip replacement surgery because I moved too much in my sleep, smelling the burning muscle and hearing the sound of a hip joint being hammered into a cavity in my bone.
However, it is nice to be able to board the plane within 15 minutes and go through security without having to wait in the priority lane.