Slumped in a wheelchair, I pushed my 11-year-old daughter through the park to see Mickey Mouse, exhausted but resolute. We’d set her dialysis machine up in the hotel room the previous night and slept fitfully as it cycled the fluid in and out of her body in an effort to filter the impurities that her dead kidneys could no longer manage. She was in kidney failure following a battle with lymphoma that had been discovered in her lungs when she was ten. Her heart had failed along with the kidney. She couldn’t walk from the car into the grocery store easily, let alone through the Magic Kingdom. She tired so easily, got out of breath. But she wanted to go to Disney World, so that was where we were going to take her. And we could do this for her, for this child who had just spent a year-and-a-half in and out of the hospital, undergoing chemo and surgeries, enduring months of daily dialysis, because Disney had an excellent program providing accommodations for people with disabilities.
We knew this program well because when our daughter was a wee six-year-old, she’d been granted a Make-A-Wish trip, the first time she was in kidney failure. She has a rare and progressive genetic disorder that destroys organs and tissue over time. Before her father donated his kidney to her then (his kidney, that she lost during treatment for cancer four years later), our girl asked for her wish, and was granted a memorable week at Give Kids the World, a special village in Florida where Wish Kids can stay and are provided with passes to all of central Florida’s major theme parks.
There are things about living with disabilities, chronic or acute illness or disease that might not be apparent to most people. Our lives are regimented by medication or procedure schedules. Those things may need to happen in private or even require sterile method to be followed. The person who has the challenge often battles intense issues with fatigue, his or her little body having to work so hard to do things the rest of us do effortless. Draw in air to our lungs. Push it out. Our strong hearts pumping blood all the way up to the tops of our heads and the soles of our feet. When we go to Disney, we might be able to manage a few hours in the park before our child is so overcome with fatigue it becomes unsafe. And for us, our daughter doesn’t sweat properly, so extended exposure to the heat becomes a danger in itself.
Being able to bypass long lines and enter rides more quickly meant my child actually got to experience more than one, or possibly two, attractions at Disney during a day. Our tickets cost the same as everyone else’s tickets, but our child’s body does not permit our family to enter the park at opening and leave when it closes so that we can see and do and experience and make lots of wonderful memories. We need to move through rather quickly and leave after a far too brief stay. Go back to the hotel room. Run her through a manual pass of dialysis. Give meds. Let her rest and sleep.
Sure, we could stay home. Not take this type of trip or gamble this way. We could let her live her life out in a series of hospital rooms, her bedroom, and classroom when she’s able to get to school. That is not much of a life for a child who loves everyone and everything and lights up a room when she explodes into it. That is not much of a life for any child or anyone.
Some people have abused the disability accommodation system at the Disney parks, and abused it badly. Because of their thoughtless and selfish actions, Disney has decided to dramatically alter their disability program. What they are now offering instead would have meant our family could still only manage to visit one or two attractions during a visit. I wonder what this will mean to all the children sent to the Give Kids the World Village on their Make-A-Wish trips? The grounds of the village are filled with small, sweet bald heads, kids in wheelchairs, painfully thin kids wasted by chemo or disease, puffed up children from steroids. They are children who have gotten sick, but they are children and want to still do what children do. They want silly and exciting and fun and good-scary, the kind of scary that doesn’t eat up your cells or cause parts of your body to be cut off or out. The family in the condo next to ours at Give Kids the World was on their goodbye trip with their daughter. There was nothing else to be done for the tumor destroying the brain tissue of that beautiful seven-year-old. Mom, grandma, and little sister were at Disney with her to see her smile and fix those final memories of a happy time firmly in their minds before they had to stand at her bedside and watch her die.
Just the other day, my daughter, who is about to turn 18 this week, turned to me and said, “Can we go back to Disney?” My daughter, who has fought for life from her first breath and valiantly battled every horrible medical nightmare thrown at her so far, who continues to live with a disease which now appears to be shutting down her pancreas and will not stop ravaging her ever — unless we are fortunate enough that some cure is found, and found soon — wants to go back to the happiest place on earth. What do I tell her?