To Those Who Stare at My Daughter Who Has a Rare Disease


We passed one of you on the street today. My hunk of a husband was wrestling our black lab, and I was walking with our daughter. Well, I was pulling our daughter “E” who was clumsily following me in her bright green gait trainer. I was hoping you’d smile, or even say hello to our sweet E. However, you stared at her as though she were on display — then avoided eye contact with me and brushed past us.

I know you avoided eye contact because I was looking right at you, hoping and waiting for you to interact with us. Then, the four of us were left in your wake — E totally oblivious, hunky husband and dog still wrestling, and me, disappointed. Your avoidance reminded me of another dear stranger when we recently had to tube-feed E in the middle of a Chick-Fil-A.

Dublin, the service dog in training, had sprawled out on the floor. One of my best friends was holding a hungry, screaming E, while I hurriedly hooked her up to a syringe for feeding. We were quite a sight to behold, I truly cannot blame you for staring. You were sitting with your children, who were also staring. Your little girl piped up, “Mommy, what are they doing?” and you hurriedly changed the subject to Dublin, the dog who was now determinedly inching away in order to grab a stray fry. Your darling girl persisted, wanting to know what was going on with E and why it was happening and who we were…and you continued to change the subject and ignore her questions. I looked up at you to share a knowing smile, but instead you looked away. And I was so disappointed.

Your daughter was not being rude, she was being curious. She wasn’t afraid, she was interested. She wanted to learn and needed you to teach her. And you let the moment slip away, perhaps because you were afraid of being rude. You wouldn’t have been. We would have welcomed it.

 

You see, something happens from the time we are young to the time we are older, when we go from bright, curious children to adults who avoid and brush past toddlers in gait trainers. Disability becomes frightening, odd and unusual.

I am positive you meant no ill will (and if I had to guess perhaps you were trying not to be rude) and I loved that you spoke about Dublin and his purpose. But your decision to not answer your daughter’s questions made my daughter more unapproachable.

You could have explained, or even better, sent her over to talk to us. We could have educated her (and you) about what a feeding tube is and why E needs it. We would have explained that E has a rare disease called Phelan-McDermid syndrome that make her life look different. We also would have told you all about how E is mischievous, loves to read and hates spinach. We would have explained that Dublin is still learning, but he will help E in many ways. I would’ve asked about your daughter’s favorite color or favorite foods, and E would have smiled. Together, you and I would have shown our girls that disability isn’t scary, it’s just different. It’s something to be treasured and explored. It’s friendship and acceptance, not pity and avoidance.

But we didn’t. We couldn’t.

My daughter could have experienced kindness from a peer, yet the smile that was meant for her went towards her dog.

So, my two strangers, and all who we may encounter — I know my family of four may be a sight to behold: a wee girl in a bulky contraption, a plain-as-day puppy in a service vest, and two parents who are frazzled, yet friendly. Send us a smile, answer your child’s piping questions. Reach across the invisible divide and make a bridge of understanding. We can see you staring, and we are waiting.

I believe you meant no ill will towards us, and I write this to educate, not to judge. Before having E, I would have responded exactly like the mother in Chick-Fil-A. I am casting no stones here, just writing our experiences in the hope of bridging the gap. 

I also understand some people may not want to talk about their differences, and that’s OK! But it never hurts to make eye contact and smile. I do not speak for all, just for me and the little girl in the groovy green groover.

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