By Melanie Isaacs
I was only five when my Uncle Brian passed away. He and my Uncle Billy, who died before I was born, had Duchenne muscular dystrophy. I do not remember the hardships they faced or the struggle my parents and grandparents had keeping them comfortable with declining health, but I do remember his laugh. I remember zipping around on his electric wheelchair sitting precariously on the tray in my Smurf shirt. I also remember one day we decided to go get pizza. I had earned a free personal pizza for reading three books. I was so proud. I put on my Book It pin and the whole family loaded in the car. But when we got there we saw stairs. There was no ramp, and no way we could get Uncle Brian’s wheelchair into the restaurant. I remember being angry. I loved pizza. Uncle Brian loved pizza. Why was our family left out?! We left deflated and hungry.
Fast forward and thanks to the American’s with Disabilities Act of 1990 physical accommodations are now mandated. Pizza for everyone! But going about my business I had an encounter that reminded me of that day we couldn’t get pizza.
I was finishing my master’s in biology and working at an aquarium in Chicago when riding home from work I met a family. The dad had noticed the aquarium logo on my shirt and we started chatting about sharks. As we talked his son grew more and more excited. At first he was smiling, then flapping, then jumping. I was excited too! This was my type of fish fanatic. But when I asked the boy if he liked to visit the aquarium he did not say a word. His dad interjected and said, “oh no, we can’t go to the aquarium. Our son has autism and it would be too much.” That is when their stop came, they got off the train and I finished my commute in heartbreak. I remembered that feeling of isolation and not getting the pizza, and I realized accessibility is about so much more than physical accommodations. The boy on the train didn’t need a ramp; he needed something else.
I started doing research on autism and I found this family was not alone. In fact, 70% of families impacted by autism spectrum disorder say they feel socially isolated (National Autistic Society). It is infinitely easier to stay home when three of the most common challenges with autism include anxiety, sensory sensitivities and difficulty communicating.
I switched my master’s thesis from cephalopod behavior to creating a set of tools to help people with autism come to the aquarium and have a good time. I took tools commonly used in behavioral therapy, but customized them for the experience the aquarium provided. From the parking lot, where you may have to walk a bit, to the loud hand dryers in the bathrooms and the fact that some animals may be off exhibit, we foreshadowed it all in a video. And it worked. The kids we invited had never been to the aquarium, their teachers were a little nervous, and we all had a blast.
In 2012 I founded the Phoenix based nonprofit, Pal Experiences, to continue this work. Our tools have evolved quite a bit since the aquarium in Chicago. And we have a name – Pal Places – to help families identify the destinations that have incorporated our tools and become more inclusive. Pal Places offer digital tools like video social stories, insider tips, and a mobile communication guide that help guests prepare for and more successfully enjoy their visits. All tools use Applied Behavioral Therapy techniques and are diagnosis agnostic, since a lot of people, with and without disabilities, experience anxiety over new situations and like to know what to expect. We have seen amazing results with families going to their first Suns games, dining out together at Flower Child restaurants, and visiting Banner Children’s Urgent Care with reduced stress and anxiety. Pal Experiences is on a mission to make all types of places in our community more inclusive. A place where everyone is welcome and supported. Because all families should get to go to the aquarium, to a baseball game, and even white-water rafting – if that is your thing. We have lots of Pal Places in the Valley and expanded into eight states the past two years. We are chugging along. But we still need a pizza place.