Independence Day

We were all ready and excited to go to the balloon launch. Every year, Serena’s Song, the first wheelchair accessible hot air balloon, comes to our town, for an “Eyes To The Sky Festival” where several hot air balloons light up the sky at night. It’s a big festival that’s held fourth of July weekend. We get an invitation through the Special Education Co-op at Dear Son’s school. The invitation allows Dear Son a “tethered” ride in a hot air balloon. This means that it goes a few stories up in the air but is still attached to the ground. The balloon goes up at 6 a.m. or 6 p.m. Normally, we choose 6 a.m. since the odds of going up are usually better. The weather has to be perfect for a launch-it can’t be windy, rainy or too hot, otherwise the launch is scrubbed.

We drove to the festival. I selected a 6 p.m. launch which was unusual for us. I dressed Dear Son in a fourth of July red t-shirt and some shorts. Parking is difficult. Typically, they close off all of the main streets and many side streets for the four day festival. The Special Education Co-op sends us a special parking pass, that allows us to park in the handicapped lot, that is located close to the festivities. Without a pass, you can’t even access the street, even if you have handicapped plates, which I do. We showed our pass and got right in. It was still a distance away but closer than the regular parking. There were policemen directing traffic so all of the handicapped parkers were in a line waiting to get in. I drove in my spot and a few seconds later a beautiful new yellow Hummer pulled in beside me. It was bright, shiny and new. I salivated at the thought of having a nice big vehicle like that for Dear Son’s wheelchair. I could imagine how easy it would be to get the chair in and out of the back especially since it was very boxy, just perfect for the wheelchair. The boxier the SUV’s, the better they are for the wheelchair since you need the top of the wheelchair to clear the ceiling. Due to the width of the Hummer, I could still get a lot of stuff in the back. Normally, with my car, I can only fit the wheelchair in the trunk and nothing else. I couldn’t wait to talk to the owner and whoever was in the wheelchair and complement them on their beautiful vehicle. In the meantime, I was just excited to see it up close. I love cars and used to drive a luxury SUV many years ago, when I worked full time and had daycare for Dear Son. Now that I really need a bigger car, I can’t afford because there isn’t any daycare for the disabled and I stay home to care for him and work 10-12 hours a week.

I opened Dear Son’s rear door to let the air in while I got his wheelchair out of the trunk. If I don’t open the door, it might get too hot for him while I get his wheelchair out of the trunk. I waited while peeking out of the corner of my eye at the beautiful Hummer. Finally the first door opened. First, the father got out and then the mother. The back doors flew open and sounds of laughter exploded from the vehicle. They were sure having a good time. Then I waited until, not one, not two but three eighteen to twenty year old boys got out of the car. All were young, tan and gorgeous. Big muscles and athletic too. Except, no one had a wheelchair. Or a cane. Or a disability. As far as I could see. Nope. Not a single one. Now, yes, it’s entirely possible someone could have a disability that I couldn’t see, but overall, they all looked pretty healthy and there wasn’t a disabled body in the bunch.

My heart sank and I put my head down in disbelief. I didn’t say a word. They all walked to the festival and continued having a good time. Probably pretty excited that they used someone’s handicapped pass to put up in the window so they could secure a fantastic spot and wouldn’t have to walk far. Ten minutes later, I finally had Dear Son’s wheelchair out of the car, Dear Son strapped in securely, his diapers and supplies loaded onto the wheelchair, his feet strapped in and locked up the car. We were ready to go to the festival, some ten minutes after our Hummer friends left the vehicle. They were surely enjoying themselves by now.

We walked to the end of the parking lot but had trouble accessing the walkway below. There was a steep hill that we had to walk down to get to the walkway. Not a problem without a wheelchair, but very steep without a pathway. With a wheelchair, the weight of the person causes the chair to accelerate as you go downhill making it hard to steer since you need to pull back hard to control the chair. The dirt path was damp and the wheels were sticking in the mud and not able to roll smoothly. I sure could use those strong men now. There was no other way to get from the parking lot to the festival. And Dear Son was so excited. Finally, we made it. There would be several other people that I would see having the same difficulty we did on the way back.

We got to the balloon launch but the launch was cancelled due to the weather. It was just too windy. In the meantime, Dear Son needed to be changed. At the festival, there are all Port-A-John’s so we walked down the street to the nearest police station to use the accessible washroom. Accessible means that the doors are wide enough to get a wheelchair in the door and wide enough to get a wheelchair in the handicapped stall. It does not mean that if you can’t stand up or wear a diaper that there is a bench to change them on. No, it means that I have to bring lots of changing pads that I need to lie on the floor so I can lift Dear Son out of the wheelchair, put him on the ground, change his diaper in full view of everyone and then lift him back into the chair. Easy when they are five years old, maybe ten years old but now that Dear Son is 14.5 years old, I can’t deadlift his 136 pound body off the floor.

That particular year, I changed Dear Son in the washroom on the floor. Today, we had another invitation to go to the festival for his hot air balloon tethered ride. Since he’s getting so big, I opted to stay home.

Independence Day means a lot of things to a lot of people. To the disabled, Independence Day means having a day when you can go out somewhere and have fun and not have to deal with all the stresses of everyday life. Kind of like a holiday for us able bodied folks.

I look forward to an Independence Day, when the disabled can do the same things like the rest of us and life is easier, just for one day. In the meantime, I’ll try to spread the word that all hospitals and public places need to have a rest room that everyone can use, a bench to change people on, a curtain to pull around for privacy and just the basics.

Some people will be quick to say that we can’t afford to make such enhancements for such a small group of people. What they don’t realize, is that when you make these changes, a lot more people use them, than just the disabled. Women with small children might change them their, people might sit on the bench, etc. Hmm…maybe that’s why it’s called “universal design”.