Yesterday, a friend sent me a viral video of a mother pushing around a child on a contraption with a skateboard. I surfed the Internet to find out who they are. The mom is Laura Patron, a writer and advocate, and the boy is her son, Joao, age 7. He has a rare autoimmune disease that caused a stroke and brain damage; they live in Brazil. A year ago, staffers at a local physical therapy center called Neuro Studio created the adaptive skateboard for him with bungee cords, reels and metal rods. A civil rights activist posted the video on Twitter, declaring Laura Mother of the Year.
As the mom of a child with disabilities, I was thrilled to see this boy enjoying himself and I also felt this mom's joy. "Because I'm always wondering how to make Joao feel freedom. And fly like this, standing, with wind in the face, with friction in the feet," she wrote on a Facebook page she created to raise awareness and fund treatment for Joao.Mother Of The Year pic.twitter.com/S97bk8jBAS— StanceGrounded (@_SJPeace_) October 22, 2019
The Internet also felt their bliss. But here's what I wonder about the masses seeing videos like this: Does it unintentionally make them think that it's parents' responsibility to help children with disabilities enjoy activities? Do most people just wallow in the feel-good moment then proceed with their regularly scheduled lives, never pausing to think about enabling and including children with disabilities? Probably. Until I had a child with disabilities, I wouldn't have thought about that, either.
The truth is, every single day and in every single way, we moms and dads do whatever we can and rope in whatever experts we can to help include our children. We push for them to be included in extracurricular programs, sports and classes and when we're told no, sorry, not possible, we push some more. It's not because we're saints—it's because we have to do it since nobody else is making it happen.
But here's the thing: It should NOT be parents' sole responsibility to make sure our children with disabilities can participate in all that life has to offer. Inclusion is something each and every person on this planet can make happen. And while big things like building a skateboard contraption are awesome, plenty of everyday opportunities exist.
You could use viral videos like these as a conversation starter with a child to show how kids with disabilities enjoy skateboarding and having fun in the park, to help them better see that children with disabilities are similar to them. You could also talk about how children with disabilities may move, speak or behave differently than they do, and that's cool because our world has people of all kinds and that's what makes it awesome.
You could encourage your children to chat with kids with disabilities at school, in the playground, at birthday parties or wherever, assuming a child wants to be approached. Or to just say "hi."
You could invite a child with disabilities over for a playdate with your child—and make it a regular thing, not a one-time offering.
You could see if a peer with disabilities would like to join your child's gym or dance class, and help pave the way.
You could ask your place of worship to do an inclusive service involving youth of all abilities.
You could pay a neighborhood child or teen with disabilities to do a small job for you.
You could email your town to get an adaptive swing or other equipment in the playground.
You could give props to a local business owner who has hired a person with disabilities for a job. Because while this should be a typical thing, it doesn't happen nearly often enough.
I asked people on my Facebook page what they would like others to do to include kids and adults with disabilities. Here's their wish list:
"Attempt to include our kids in after-school or other extracurricular activities or at least let us know if these opportunities are open to them without having to ask."—Lisa K.
"If you see your child starting at someone with disabilities, do not tell them 'don't stare.' This gives children the idea that people with disabilities are a bad thing and to avoid these people. Instead, tell them to go say 'hello' or ask them if they have any questions about people with disabilities. Drives me nuts when adults do this and I see it regularly."—Brian
"I try to engage the parent or child if they are asking questions or pointing at Matthew. I ask Matthew if he can say hi to the child and he might wave at them. That usually breaks the ice."—Brandi
"Do not yell at me when I point out how your business is not ADA compliant."—Teresa Brown
"I wish more grade-school teachers and PE teachers received more training on encouraging inclusive play opportunities. Playing is how kids make friends starting in preschool and kindergarten. The goal should always be to find a way for a child with a disability to join in the game or role play, instead of finding something different for them to do."—Tina
"Invite them to eat lunch at their table."—Anna
"Look at disabled people, acknowledge disabled people, greet and engage with disabled people, and teach your children to do the same."—Elizabeth
"Golden rule: Treat others the same way you want to be treated."–AZ
"I wish more special needs and civic groups were more inclusive with wheelchair users. I feel like the pendulum has swing to 'special needs' meaning ASD. There are still many physical obstacles and barriers in all communities. Steps, narrow doorways, van accessible parking spots, etc."—Vanica
"Teach kids that those with disabilities have something to offer, too, just like everyone else. Inclusion means valuing those with disabilities as a valid part of the group, not just it's kind to include someone. In my observation, sometimes kids without disabilities are reinforced in thinking that they are good for 'helping' the child with disabilities, as opposed to taking the opportunity to form a true friendship."—Jessica
"I wish high-school coaches were more open towards kids with special needs being part of a high-school sports team in some way."—Catherine
"Hands down, jobs for adults. There is a place for adults with disabilities in most work environments. We all benefit from inclusion. Why aren't employers tapping into this huge workforce pool?"—Jeniffer
"My son went to a public high school. If one kid asked him to a school event, he would have gone in a heartbeat. He wouldn't have stayed for the whole thing, so the commitment would have been minimal."—Anne
"Don't pat any wheelchair user's head, ever. Come outside if you have stairs during Halloween and greet everyone. Always presume competence and intelligence. Introduce yourself and don't ask personal questions ever. Wait and pause during the conversation and speak to the person, and not at them or to their caregiver. Disability and diversity are natural, and enrich a community through interdependence. Remember, we are more alike than different, be kind."—Ivana
So please, for the sake of my son and disabled children, teens and adults everywhere, I'm asking you not to just be a bystander and viewer of viral videos but to find ways in your life to include people with disabilities. I'll leave you with this quote floating around the web, source unknown:
Accessibility is being able to get in the building.
Diversity is getting invited to the table.
Inclusion is having a voice at the table.
Belonging is having your voice heard at the table.
I don't know about thanking a business owner for hiring someone with a disability. Especially if you do it publically. I'd be pretty darn embarassed if an employer was commended for hiring me. I think we should encourage employers to looks at disabled job seekers more positively but I think "giving props" to individual business owners, possibly in front of disabled employees, has the risk of reinforcing the idea of jobs as a form of charity. I want to feel confident that people see me as a person who is competent and capable of the work I am hired for, not as a charity case.
ReplyDeleteInstead, why not commend workplace accessibility? Some offices go out of their way to make their physical spaces, atmosphere, and polices inclusive because they know that people with disabilities bring strengths along with their possible struggles and value them as workers.
I know it seems like a minor difference but one can reinforce stereotypes and the other reinforces true inclusivity.
I would hope people would have the sense not to do this in front of the employee! I have done this with local businesses. I understand your point and yes, would be great to commend accessibility. The thing is, hardly any businesses in my area have staffers with disabilities (which is sadly often the case) and in giving props to owners at the pizza place, the local Subway, etc., I've had productive conversations about the underemployment rate for PWD and that the biz owner should continue to hire workers with disabilities/encourage other businesses, too.
DeleteThanks for sharing all of these terrific observations and suggestions Ellen. At the risk of being a broken record or annoying social justice warrior, I do want to say that I find it disappointing that none of the suggestions make any reference to public policy beyond very localized matters like town playgrounds.
ReplyDeleteAdmittedly, it's hard to say exactly what big policy area would apply to this particular situation. Plus, it's Brazil, and I wouldn't know where to even start with that. But especially as we approach another big election year here in the U.S., we should be spending at least some of our time and mental effort figuring out the best way to ask elected officials and candidates to address our disability-related concerns. Maybe there is no government-funded way to help a disabled kid know the joys of skateboarding. But maybe there is! At the very least we ought to put the ball in the politicians' court once in awhile and ask, "Is there anything more that can be done to make things better for all kids and adults with disabilities? Can we talk about it?"
I get that stories of hope and triumph are a lot more pleasant than talking to politicians and contemplating the cracks in our broken and half-formed formal systems of support for people with disabilities. But I would add something like this to the list of things we might want to do in addition to appreciating a story like this.