I am not an expert on accessibility, culture or acceptance. Before my sons were diagnosed with Duchenne Muscular Dystrophy I didn’t know what I didn’t know. After 8 years, I am still learning, but I have meaningful insight.
Duchenne Muscular Dystrophy (DMD) is a progressive muscle disease. Children living with DMD can walk, run, climb, some can even jump or ride their bikes as toddlers and young children. As their muscles weaken however, they lose those abilities and during various stages of the disease will slowly lose the ability to walk and levels of independence and will use strollers, scooters, manual wheel chairs and power chairs to maintain mobility and independence.
It doesn’t happen overnight and is a gradual process. For the first 4 years of my oldest sons life he walked, rode in the cart at the grocery stores, or was carried. Once he was diagnosed and we learned more about his muscles and preserving them, we incorporated a medical stroller, he now uses a mobility scooter and someday, unless better treatments or a cure is developed first, he will need a power wheelchair, as will his brothers.
We have been fortunate enough to travel with the boys and of course are active participants in our own community. Our boys are still mobile, but at times need their scooters, especially for lots of walking or long distances.
The things we encounter as barriers to accessibility are limited parking spaces for vehicles with handicap placards, buildings with steps at the entrance with no other accessible entrance, limited amounts of seating for individual using mobility devices especially in theaters and gymnasiums, blocked accessibility like cars parked illegally in handicap accessible parking stalls, or door buttons that are blocked or disabled, narrow isles, curbs, accessible entrances that are awkward to get to, hard to find, and often send you on very scenic routes through buildings and back alleys.
Some of those issues are policy issues or programmatic issues as individuals we may or may not be able to impact alone. I encourage everyone to look at the structural barriers to accessibility though and make suggestions, advocate, and make future plans that will remove those barriers.
As a mom, and that is where my experience begins and where my heart remains, an attitude of acceptance has either been then deal breaker or maker.
When we travel with all 3 scooters, especially outside of our home town, people stare at us and they make rude and insensitive comments, like, “kids these days are so lazy.” People avoid eye contact with the boys and sometimes avoid them all together. Traveling out of state, airports, and vacations all can be anxiety provoking. We figure out how to navigate airports, accessible transportation, elevators, and hotels and restaurants with 3 scooters though; we have plan B’s and C’s. It is poor human behavior that is the greatest barrier to accessibility.
I can tell you this, our good experiences have probably been greater in number than our bad experiences, but the bad ones are hardest to forget and steal some of the joy from the good ones.
I truly believe that more often than not, the people that hurt us with their stares and comments are not bad people. I think when people are uncomfortable or scared they lose common sense. Because all it really takes is a smile or a friendly hello. It is okay to say you like their scooter or introduce yourself. It would be fine to hold the door open. Those are common-sense thing, use your common sense. Meeting new people that use a scooter or a wheelchair does not have to be unlike meeting any other person new to you.
Do for others what you would want done for yourself. It’s the golden rule. It’s not rocket science. It’s common sense and it is kindness.
In my experience, the right attitude can overcome any barrier to accessibility. The right attitude can overcome a structural barrier.
Kindness and acceptance creates accessibility.
We chose a small private middle school/high school for my son that was not accessible. That’s right, my son with DMD goes to a school that IS NOT ACCESSIBLE. And we love it. That’s right, WE LOVE IT!
I don’t love the stairs to the lunch room. I don’t love that there is a wing in the school that he won’t have access to in years to come. But, I love the way he is accepted and treated. He is included. He is wanted. He is blossoming in that environment.
Once the school district knew Max was coming, they fundraised thousands of dollars to install a lift in the school so that he would have access to the library and upstairs classrooms. I didn’t ask. They did it. They had an attitude of acceptance.
There are stairs to the lunch room with no lift, so they used common sense. They offered to bring lunch up to him. My son wanted to be with friends so when we offered to carry him up and down instead, the school said yes.
The kids at this school have an attitude of acceptance. When I carry Max they don’t see a middle school boy getting a piggy back ride from his mom. They see Max getting the help he needs however it will work. They are kind to him. They smile at him. They hold doors open for him. The school and it’s students help him. I can’t say often enough that kindness and a dose common sense have made this building accessible.
It’s not perfect. Parents park in the handicap stalls when they pick up kids. The gym has no space for someone sitting in a wheelchair to utilize. These are things that I challenge all of us to do better at and plan better for. Be advocates!
Just as important though, this mom says be kind and remember to smile.