Invis-Ability

My daughter Lulu doesn’t look like me. She doesn’t look like anyone. She doesn’t look like her differently organized genetics, or like a child who can’t eat and requires a feeding tube. 

But all the things she doesn’t look like are there, burrowed in her skin and bones and cells. My genetics and courage. Her dad’s genetics and silliness. The inability to eat. The extra hard work to learn to speak. The struggle to orient herself in loud, chaotic situations. The seizures. The indomitable resilience. 

Disability can dog the most typically presenting people. There are struggles – physical, emotional, mental – that don’t have the pitiful grace to hang on our outsides. They don’t make themselves known without observation and empathy. 

It’s a blessing and curse. People don’t place unfair limitations on the invisibly disabled. But, they also don’t provide understanding. 

Once, I wrote a piece about Lulu riding the short bus to special needs school. I included a photo of her marching toward her beloved bus. A woman angrily responded, “It’s a toddler getting on the bus for preschool. That’s the bus toddlers ride. Don’t act like you know when you don’t.” In dialoging, I learned about the profound disabilities her daughter lives with – back achingly heavy work, on a daily basis. 

Sometimes bodies hide difficulties and sometimes they show them. 

So, I think, the work of a just and loving society is to make space for all. To empathize with all. To give little buses and spectrum consideration and ramps and individualized education and inclusive places where the typical and atypical to meet on equalized, and mutually beneficial, terms. 

It’s a lonely sort of existence – locked away from play and education and work and communion because of your disability. And, it’s a lonely sort of existence when society misses the lessons and humanity shared when all members come to play. 

Whatever Lulu looks like, she will win and break your heart. She’ll inspire you. As long as I have breath, I’ll be expanding the spaces she, and you, can choose to bring beauty to.

tubie* god

A thin cord snakes down the length of a pole and into the belly of the baby sleeping in the manger – feeding her. Today, god is a tubie*. Pierced and disrupted, already. And what do you let that do to you? 

Does it disorganize you to consider a god who willingly chose a form so disruptable and piercable? Do you cling to a Greek god inspired Jesus - all muscles and masculinity and stoically abstaining virility? To a god of all-knowing, all-presence, and stoically abstaining potency? 

… 

It softens me. My baby is a tubie. Disrupted. Pierced. Fragile. 

Strangely, a god unable to partake in the same sufferings – incapable of the same design errors – makes me angry, rather than secure. 

This is about more than ability inclusion in modern day nativities. It’s a homing to a being participating in the same world and rules I live in. A god who doesn't stand in observation of our travail and nativity, smirking in knowledge and sympathy, open-handed and willingly ineffective. Rather, a god who is his own cycle of lament, and advent, and Christmas. Just like my baby.

*a "tubie" is a baby dependent on a feeding tube to meet their nutritional needs. My daughter has a special, implanted tube that allows us to put liquid formula directly into her small intestine - although other babies may receive food into their stomachs.