I used to reference riding the short bus to make fun of myself, or tease others, or to express frustration with their choices and actions. It’s not the only ableist insensitivity I’m ashamed of in my life.
My child rides a short bus. The strongest people in my life ride a short bus. They ride it every day, into a world made for everyone but them. This environment doesn’t understand their tubes, prepare roads for their amazing minds, accommodate their wheels and equipment and seizures.
They push into a space meticulously designed for typically abled people, and keep coming back, hungry for the chance, working for growth, cherishing the community.
Suddenly, my insensitivity isn’t funny any more. Nobody works harder than my Lulu. She celebrates school. She stomps into speech therapy seven times a week. She pushes her tongue around unfamiliar sounds, and mashes words together in ingenious ways, just to make her little soul known. She gets frustrated when all her effort still can’t make her words work.
She spent her first year and a half trying to tell us things weren’t ok. She screamed nearly constantly. She got sick frequently. Despite being in the doctor’s office every 1-2 weeks, and being diagnosed as failure to thrive, her physicians never got beyond trying to calm her frightened parents.
So, smart girl stopped eating one day. It forced us to take her to the hospital. The initial admission for dehydration turned into a two week stay – including a surgery to put in her feeding tube. Months later, we got the results of her genetic testing.
She’s missing 9 genes, and it turns out, that has an impact on how she develops. We don’t have the benefit of knowing exactly how, though, because she was the first case her geneticist is aware of missing this exact segment of DNA code. Only three of the genes are even studied and known for how they work in the body and development.
Every single step of her life takes courage, ingenuity, luck, and hope. This society puts all its eggs in the basket of intelligence and looks. So, as a parent, learning that Lulu’s intelligence may not look like what I was taught to value by society shook me. Learning she needed a feeding tube implanted in her stomach shook me. Learning she would ride the little bus to school shook me. Learning that my mothering would never be enough without medical intervention and therapeutic help to keep her alive and thriving shook me.
But, we found the courage as a family to face these things, and each new instance of submitting to her reality brings us so much hope and relief. No one works harder in our life to make a good life than Lulu. Aside from being very small, it’s not easy to see her fight and difficulties. But she has been through so much. And she keeps marching cheerfully forward, hungry to learn and grow and have a ton of fun.
So, if you say the “r” word around me, or use the term “special” to suggest someone is not adding up to your expectations, or refer to the short bus as the only transportation fit for someone who did something really dumb – expect a firm, gentle pushback.
Not in anger – unless you mean to insult the lives and souls of dear humans. But, in recognition that you haven’t maybe met a person whose whole realm of possibilities is so different, or seems so much smaller, but who none-the-less lives a rich, perspective-changing life.
If you mimic the involuntary motions of persons as a way to minimize any human, I will ask you to stop.
And, don’t say the r word. Just… don’t. Not to describe situations you don’t like, not to describe people you don’t like, not as a description for anything.
This isn’t me being politically correct – it’s being humanly correct. It’s tying the slights and arrogance and bias of the typically abled world to the REAL HUMANS who live daily under that weight.
I’m thankful for that little bus my tiny human enthusiastically greets every day. She falls asleep in the 10 minute ride home – exhausted by her work – and then waves at it until she can no longer see it. It is special, in every exquisite meaning of the word.
Jessica Zan is a full-time wife, mom, and nurse, sometimes writer, and occasional speaker. She’s busy raising two girls who are way smarter than her. One of those girls is missing nine genes.
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