Left Behind

Hello, and welcome back. July 26 is a National Disability Independence Day, a federally recognized day to celebrate the 1990 signing of the Americans with Disabilities Act (ADA).  Before the ADA, people with disabilities were not legally entitled to reasonable accommodations, including at universities and colleges. 

Did you know that? 👆 Does that make you angry? Does that make you sad? Do you question why did it take so long? Would you feel differently if it directly affected you every time you left your house? 

I think you would. See, the thing with a disability is that at any point anyone can become disabled. It’s not always like my case where I’ve lived my whole life with my disability . Not everyone is born with a disability, but anyone can become disabled. If you suddenly became confined to a wheelchair wouldn’t you want things to be accessible for you? Not only accessible, but accessible in the way that you weren’t causing a scene just because you wanted to get into a building, or get to your seat at a concert, or get on an airplane, or move around freely in a hotel room, independently being able to shower….the list goes on and on.

My Chauffeur

Even with the ADA in place which has certainly helped in many ways, things are still difficult for those living with a disability. We are constantly having to make different plans because a place isn’t accessible. Just last month I stayed in a house with no railing to get in and out of the pool. Don’t even get me started on beach accessibility. Beach accessible mats are few and far between. What’s the thinking there I wonder? That those of us with a disability don’t deserve to enjoy the beach without killing ourselves and those helping us to get there? That people with disabilities don’t deserve to stick their toes in the ocean? That an accessible walkway down to the beach wouldn’t be aesthetically pleasing to other beach goers? Cost? 

I’ve been sidelined many times in my life because a situation didn’t accommodate my needs. Watching, and waiting. I’ve spent half my life just watching. Suddenly, sitting alone because a last second decision had to be made on what to do. Ruin the whole family’s time, or just mine? Suddenly sitting alone with all those thoughts. I always always say, no you go ahead! And I mean it. No ones’s time should be ruined because of a lack of accessibility for me. I would never want that. I can tell you though that’s a really lonely place to be. Alone with those thoughts…as a child and now as an adult separated from seeing my kids experience things we were supposed to experience as “firsts” together. I have sat, sometimes hours, waiting, torn between being glad they are still getting to enjoy the activity, but feeling immense guilt that as their mother I couldn’t be with them. I wonder how they felt?  I bet they were really confused when they were younger. All they hear is that everyone should be included, yet the world just doesn’t work that way. Now that they are older we still have the same experiences, but now they understand. People with disabilities still aren’t always thought of or included. We just aren’t. 

We actually found that D.C. is very accessible

NYC, not as accessible as it should be

We do continue to fight for our rights. Did you know that those who are in wheelchairs aren’t allowed to stay in their wheelchair to get on a plane? They have to part with something that is crucial to their existence, knowing that the people handling their very expensive wheelchair a lot of times aren’t handling it with care. More often than not they are returned to their chair after the flight to find the chair has been damaged and there’s no one to fix it, or even cares that person has no other way of getting around? Don’t believe me? I’ve seen it happen! They told a lady who was waiting on her wheelchair with me after a flight, we are so sorry there’s nothing we can do, and left her there terrified because she had no idea what to do. It happens ALL THE TIME! Those chairs are our legs! Can you imagine exiting a plane and then having your legs taken away, and someone saying, “we are so sorry, there’s nothing we can do”. That’s how it feels!!! This should infuriate you to the point that you would research how to help change this! Check out the Air Carrier Access Amendments Act for more information. 

If the tone of my blog sounds angry, well, that’s because it is. Writing about this triggers all the memories of times I’ve been left out just because I am disabled. That’s internally traumatic every time it happens. You feel like, am I not good enough to enjoy…for example the St. Louis Arch? Did you know it’s not fully accessible? To be able to fully experience it there are several stairs to the top? The sadness in Jack’s eyes when he found out I couldn’t go up with them, the confusion he was dealing with not understanding why his mom had to stay at the bottom and it wasn’t made so I could go too. The frantic tone in his voice of quickly trying to figure out a way to make it work, so he wouldn’t have to leave me alone. That’s just one example of many. 

Reunited after they went to the top

I hope that you don’t have to experience that feeling of why am I not good enough to be thought of or included? Do I not deserve to see and enjoy things because I’m disabled? Or see your child or spouse struggle with the decision of leaving you behind because that’s what is best in the moment. I just really don’t get it. I don’t get why people are ok with just letting that continue. 

My husband is a civil engineer and fights for the cause daily to make sure sites are ADA compliant and that he said the ADA regs were updated after 20 yrs in 2010 to help make things even better. At least progress is being made.

Living as a person with a disability takes humble courage on a daily basis. You never know what you might be excluded from, or situations you may find yourself in, just because you are disabled. So, even though the ADA was a great start in 1990 and definitely something to celebrate, WE have a long way to go. I hope you will become more aware and notice these things, and maybe even take the step of speaking up. I hope by reading this, it helps you to see it’s not always just that one time the disabled person has to be left behind. Sometimes it’s an entire lifetime of those moments.