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How My Daughter With Cerebral Palsy and I Are Making Waves for Inclusion

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We never know what a first experience will be like. We prepare for anything and hope for the best. But even so, we can be caught off guard by choppy waters.

My daughter Ari and I are training for our first triathlon together. As a 16-year-old with spastic cerebral palsy and a visual impairment, she isn’t doing this alone. We will swim, bike a run together in Team Ari style. I will pull her in a raft for the swim leg, ride my bike pulling her in a race chair, and complete the run leg pushing her in the same adaptive race chair. It’s a labor of love for both of us. It’s a simple equation: Determination + Guts + Love = a Dynamic Duo finish!

For the past few weeks we had been training in our pool at home, testing the waters with our equipment. We were ready to take the next step, swimming a longer distance and faster in the lap pool at our local gym. I have been a member at a great club with indoor, outdoor, and warm water pools for the past 10 years. On any given day you will find individuals training, groups taking water classes, or families just swimming for recreational fun. So I spoke with the club manager, asked for permission to train in the lap pool with Ari, and paid for her to be added to my membership. No problem. He gave us the thumbs up and good luck wishes for our upcoming race.

Three days later, we gathered up our raft, life vest, tether and waist belt to head to the gym. Our safety plan was in place. Michael had lifeguard duties in case our raft tipped or we needed any assistance. He would walk the length of the pool deck and follow us. Ari was comfortable and secure as we set sail on the Team Ari cruise line.

A couple of laps down, and I was settling in with my stroke and kick. There was only one other swimmer in the pool, so there were no waves to speak of. Smooth seas ahead. Ari was enjoying feeling the water and lane line with her right hand, which she has more function with. We stopped after 10 laps and she shared, “I didn’t know what to expect for my first experience in the gym pool, and I love it here!”

Voila! We can do this successfully, I thought. We were swimming freestyle, we are in the zone… stroke, stroke, stroke, breathe, stroke, stroke, stroke, breathe. But my rhythm was interrupted when I saw someone talking to Michael as I turned my head for air. And then there was another person, and another. Wow, I thought. Michael is a
popular guy for someone who is usually not so chatty. Hmm.. He’s an extrovert today.

But then the wave smacked me. I saw his face and realized he wasn’t having a casual conversation. I started to feel that sinking feeling in my stomach, that wave of discomfort that I feel when we have to defend, protect, or justify our right to be here. It hit me in my gut like a tidal wave. I felt like I swallowed a gallon of chlorine and I needed air. I swam to the shallow end of the pool and looked to him for reassurance. He nodded his head. Then he uttered three simple words, “Just keep swimming!”

I regrouped and fought my fear. That familiar fear of discrimination.

It turned out that a bunch of grumpy ladies in the water aerobics pool complained about Ari and I in the lap pool swimming with our raft. Somehow we became a threat. How, I ask? How does a mother and daughter enjoying a good time in the pool together become so controversial? I have no idea. It makes no sense. We did not take
away, inhibit, or intrude on anyone’s activity. We didn’t inflict harm on anyone, and we paid our dues to be here. So please tell me what infraction we have committed? We want to enjoy the pool just like you do.

We will continue to make waves for inclusion, and someday we hope there will be a ripple effect far and wide. We hope that those who discriminate against individuals with disabilities will see more clearly, think more fairly, and feel more deeply. We hope we can ride the waves together, and embrace all our differences in the sea of

Follow this journey at Team Ari.

Originally published: August 29, 2016
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