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Pointing out meaningful representation for children with disabilities

‘We train our kids to know the difference between genuine friendship, tokenization, and inspiration porn.’

Jialei Sun

Having been part of the 20% of disabled people who are not the only people in their family with their condition, my parenting has benefited tremendously from the example set by my parents, who, like me, live with achondroplasia, the most common form of dwarfism.

We train our kids to know the difference between genuine friendship, tokenization, and inspiration porn.

We have to talk to them about what activities may be planned around a play date and which ones are physically safe for them. We have to tell them that while they may love their trampoline, “for kids like us it’s unsafe.” It may sound unbelievable, but we have to talk to our kids about being on the lookout for when you and your children want them to do something you may think is funny, to video and post on the internet. It’s not funny, it’s exploitation. And one only has to look at TikTok or YouTube for a litany of examples.

We have The Talk again, after a non-disabled person tells them how admirable it is or how inspiring they are for running for student council, playing baseball with their peers, or just walking in the front door. While we are aware this is a way non-disabled people often make themselves feel comfortable around disabled people, this is not helpful.

Their moment of inspiration will not pay for our kids college tuition or future mortgage, and their words would be much better spent advocating to make society more accessible to families like ours. So I would hope they would go back to their job and advocate for that co-worker who needs a wider doorway, better mental health insurance, or would work to bring in paid interns with disabilities so our kids aren’t limited to careers in food, filth, filing, flowers, fetching, folding, friendly, and festive.

At the same time, I see as a White woman how rare it is for society to pay attention to kids of color with disabilities growing, learning, thriving: We impress upon our children the importance of holding the door open for those who come behind us, just as those before us provided opportunities that have landed us where we are today.

For every discussion of fashion, we talk about body positivity advocates Kathy Woods and Sinead Burke. We avoid reality shows that are nothing more than modern-day sideshows when it comes to little people, but instead show them works by Cara Reedy, Keith Jones, Day Al-Mohamed and others. We talk about meaningful representation across race and disability.

We have The Talk again when we discuss over dinner that they will encounter people in positions of authority who don’t believe people like us belong in “polite society,” whether it be schools, workplaces, or the mall. There is always someone there to remind you “The circus is in town “or “Where is your mommy; does she know her baby is lost?” It is key that our kids develop strategies for how to deal with this. And given that 50% of individuals killed by law enforcement are disabled, showing defiance or simply reaching for one’s wallet, are equally likely to put their lives at risk.

Every time there’s a school shooting, I find myself thinking: What if they can’t run fast enough? What if they’re seen as collateral damage if it comes down to keeping a door open long enough for them to get in, versus saving their peers? And it terrifies me. So we have The Talk again, telling them to listen to their teachers but to do what they need to do to survive to come home to us.

I frequently remind them the heavy lifting in world-changing is not on them. So many of our kids feel like they need to take on the world. I want them to be kids first, changemakers second. So, I frequently talk about the work I do at the Ford Foundation, which includes using money that once funded the eugenics movement to build organizations of doctors with disabilities, law students with disabilities, and disabled journalists. We can and do fund research and data collection so people like us, actually count, where it matters. We change the systems that codify the poverty of millions of disabled people.

I listen to The Talk from African American parents of kids with disabilities, and from African American disabled people. I respect that while I understand the dwarfism side of my children’s identity, I will never understand the experience of living under a system of White supremacy. However, I have a responsibility to call it out and address it wherever and whenever possible, and use the privileges I have to drive the change I need to see.

Rebecca Cokley, a disability-rights advocate, is the first U.S. Disability Rights Program Officer for the Ford Foundation. From 2009 to 2013, she served as an appointee in President Barack Obama’s White House.