Together We Can Make the World More Accessible for All

I have always thought the idea of accessibility was good, but if you would have asked me before becoming a mom of children with medical needs what accessibility meant, I would have probably talked just about wheelchair ramps. While wheelchair ramps are very important, accessibility means so much more! We as adults tend to overthink or box ideas in, but kids often have a much wider view, so I asked some of them what accessibility is:

“Accessible means easy for everyone. Accessible means a lot to me because I have a wheelchair and if nothing was accessible, I would have to stay at the house all the time.” – Jillian, age 6

“It means everyone plays.” – L, age 4

“Accessibility means getting to do something fun. If it’s not accessible, then you’re missing out on things that kids without wheelchairs get to do.” – Grace, age 10

“If my school didn’t have ramps and an elevator, I wouldn’t be able to get to class and other places that everyone else can get to.” – Bella, age 10

“Accessible means it’s easy for everyone to go places, like being able to go to the store.” – Josiah, age 8

“Accessibility means everybody can do it even if some need to do it a different way.” – Hannah, age 11

“Being free to be myself.” – Ashton, age 6

Our Accessibility Story

I am privileged to be the mom to two amazing girls! They both are medically complex, which looks like them receiving supplemental oxygen and tube feedings all day. It also looks like wearing leg braces and my oldest using a wheelchair when we are in public because her legs tire too quickly to walk community distances.

This has caused us to have new eyes for the world. We divide the world into what is easily accessible, what we can make accessible, and what is going to take a lot of work or be next to impossible. We do not let many things stand in our way because we are determined to live life to the fullest doing the best things for our children — however that looks — but sometimes things are a challenge.

While the Americans with Disabilities Act set a great groundwork for accessibility in our country, it is easy to think that it fixed all of the accessibility needs, which is not true. We often run into things like curb cuts that might be in the parking lot, but in a very inconvenient place. Or automatic door openers that are there; however, they are in a location that causes the door to hit the wheelchair when the door opens. These are not things that I noticed before traversing life with a kiddo who uses a fun pink wheelchair.

Speaking Up for Accessibility

The biggest thing that brings change to a situation is when people notice and speak up. Many of our friends have commented in the last few years that after spending a day with us in public that they start to see public spaces differently. They see the challenges differently because they have watched someone try to traverse them.

How can we do that on a large scale?

1. If you are creating a new space, invite people with disabilities and their families into that process so they can share their personal experiences. It is often less expensive to make something accessible from the start then to try to retrofit an area that has not been made with accessibility in mind.
2. Spend time with people with disabilities, not just wheelchair users, but also all kinds of disabilities. I was recently out with a friend who uses a catheter and they commented how it is hard in public restrooms when there is nowhere to set their supplies other than the floor. That was not something I had thought about before. Bathrooms tend to be an area that is very inaccessible to a lot of people, including many people who need to use a changing table but are too large for infant-sized ones.
3. Listen at public meetings when people are advocating and help their cause. Often, people with disabilities are treated like they are asking for something special if they are requesting accommodations when what they are really asking for is the ability to access common spaces, too. That might look like needing different accommodations, but we are not talking about extravagant things here. Often, the accommodations improve the lives of many categories of people, and it is the right thing to do.
4. If you run a program, event, business, church, or any other location that people might visit, make finding out accessibility information easy. If your business is up three flights of stairs without an elevator, have that on your website in a clear place. Have a place that makes it easy for people to ask accessibility questions, preferably with multiple modes of contact, like having a phone number and an email address. Personally, for our family it is easier for me to email a location after my kids are in bed than it is for me to call during business hours.
5. Don’t be offended when someone with a disability says they cannot go somewhere because of an accessibility barrier that is not their fault. A local amusement park has strict rules even for their children’s rides which makes them inaccessible to my children. That is not our fault, and being mad at us about that does not change the situation. You can try to help a family advocate for accessibility, or you can choose something else to do. Also, telling the person with the disability (or his/her parent) that they need to advocate in that situation is not your place. I advocate for my children all of the time, but sometimes there is a limit to the number of things you can advocate for at any given time. Putting more on a person with a disability or caregiver’s plate is unreasonable and unkind.
6. Ask a family what accessibility looks like for them. Just because you have interacted with one person with a disability doesn’t mean that everyone needs the same accommodation, even if they have the same diagnosis. There are some accommodations that are pretty universal like curb cuts, but there are other accommodations that are person-dependent. Ask the people involved; do not just assume.

Accessibility is Valuing All Members of Society

Accessibility is something that we as a society have to work together to improve because we all need each other. Our society is less when we only include some people because every person brings value to the world in a large multitude of ways. We tell people with our actions that they are welcome in a space when we work together to make it accessible for everyone. This also cannot only be the responsibility of people with disabilities and their families, because they are already advocating for so many things. We need to join with each other and remember that we are all interconnected.

How can we all go back to that child’s view of accessibility meaning everyone can join in, and work together to make that happen?

This simple picture to me shows all of the different ways people needed to work together for accessibility, from the person who advocated that this area had to be wheelchair accessible, to the staff and board members who agreed, to the engineer who designed it, to the bricklayer who followed the plan, and two little girls who understand accessibility so very well that they are always looking out for each other to make sure they both can join in.

Amanda is married to Brent and has two children, Jillian and Lydia. They are both still considered undiagnosed although it is thought that there is an underlying muscle issue with a maternal genetic inheritance as Amanda has many similar symptoms, just not as severe as the girls. They both have GJ-tubes and Jillian is on oxygen and has leg braces. They are the happiest kids, and they both love making people at our local children’s hospital smile. Jillian’s favorite things revolve around pink, purple, glitter, and tutus, and she is ok with all the medical stuff as long as she can make it girly. Lydia loves smiling and cuddling. They are a big Disney family and planning trips to the parks is their stress relief.

Amanda has a degree in early childhood education in both regular and special ed and taught 4K until Jillian was two years old, when she became a stay-at-home mom to help protect Jillian’s lungs from germs. They rely on their faith, friends, and family to get them through the hard aspects of being a medically complex family. Her blog can be found at brownandpinkpolkadots.blogspot.com.