Sometimes it’s hard for me to feel much pride in the America in which we live. Don’t get me wrong; I love every natural part of this land. The forests are magical, the canyons are vast, the mountains crisp and high, the plains open and free. But the political and corporate monsters that rule from behind the smoke screens they create sometimes overshadow the wild wonder of the land itself.
I have mostly been a person who chose to “opt out” instead of try to change a system that I saw as hopelessly broken. I lived in far out rural areas, focused on growing my own food, saving organic seeds, and aimed for sustainability and independence in whatever way I could. I wanted nothing to do with the government or any of its deluded laws and policies.
Now, of course, avoidance is no longer an option. When Oliver was born, I had 2 choices. Either I could maintain my unwillingness to participate in programs that could greatly benefit him or I could set aside my grievances and get connected and involved for his highest good. Obviously I chose the latter.
It’s been a challenge to learn to work within the constraints and structures of the aid programs of this country but along the way I’ve developed some serious gratitude for the ways my son is supported here. Although I talk a whole lot of shit about our government, I am unendingly thankful for things like the ADA (Americans with Disabilities Act) regulations that were made law in 1990. I know they can be a pain for businesses and builders but these rules make a gigantic difference in our ability to include Oliver in the world without hardship. Our recent trip to Washington highlighted so many of the amazing things that make our country accessible to people with disabilities.
The day before we were leaving I suddenly realized that we hadn’t figured out how we were going to GET to the airport. Our budget is extremely tight these days and the trip was overextending us as it was so we didn’t want to pay to park our truck at the airport for a week. Before this year we would have just taken an Uber but as Oliver gets bigger so does his equipment and that means the logistics get a bit more complicated. A regular car can no longer accommodate his wheels, which now come in the form of an actual wheelchair.
It wasn’t the end of the world though and I just figured, oh well, we’d have to drive ourselves. Much to my surprise a quick Google search informed me that they now offer handicapped accessible Ubers!! What an amazing service to add to an already amazing service! When companies expand to include people like Oliver, it makes the world feel so much more inclusive. An accessible van pulled right up to our house, the driver loaded Oliver’s chair, locked it down and our chariot whisked us away.
At the airport, the check in woman was extremely helpful, gave us wheelchair pre-boarding so that we’d have time to take apart and gate check his chair without people breathing down our necks. They rearranged seats to make sure that we were together so that Conrad and I could both care for the kids. And although we didn’t use one this time, many airports are even installing adult changing rooms so that you don’t have to lay your loved one down on a dirty public restroom floor to change their diaper.
As we flowed easily through the airport, following the signs for all the elevators, I was overcome with emotion and thankfulness at how much effort was obviously put into making all areas easily accessible to a person in wheels. This just isn’t the case in many other parts of the world.
A couple years ago I watched a documentary about the unique ways children living in remote areas get to school. The part that stuck in my head was the story of a family living in a village in India. One of their sons had Cerebral Palsy and therefore couldn’t walk or run like the other children. That didn’t stop him though. His brothers pushed/pulled him to school every day… not on a smooth paved road though… The cameras followed them through a typical morning of dragging this rusty old wheelchair through deep mud, huge ruts on dirt roads… for miles they pulled him. Ultimately one of the wheels completely broke and they then had to drag the chair with one wheel to the village to find someone to fix it. When they finally did make it to school, his classmates carried him around the class and out to recess.
I watched this at a time when I was really coming to terms with the challenges we would face with a quadriplegic child. I was scared and filled with grief and feeling like the world was not a place full of possibilities. This movie was inspirational in a profound way and helped me to realize that there WILL always be a way, even if it takes some extra effort. This belief has fostered my appreciation for the absolute privilege we have in this country and the way that IT IS (relatively) EASY here. Although those kids in the movie had smiles on their faces, you could see how hard they worked to drag their brother for miles each morning and afternoon and their frustration when the wheel broke. I can only imagine the toll that kind of effort would take on their bodies over the course of a lifetime. I am so glad to be saved from that struggle.
Of course, I know that there are still many things to improve here too. And we will have to be inventive to overcome things that haven’t been made accessible yet.
I went to change Oliver’s diaper on the airplane and had a moment of projection into the future. I wondered to myself, how would I change him once I couldn’t cram him into this little baby-changing table? As it was, he was half hanging off of it.
And when we returned home (after 10 hours of travel) on Friday night at LAX we were panicked to realize that there just AREN’T any handicapped accessible Uber vans reserved for actual handicapped people on Friday nights in LA. The social scene is lucrative and large groups require the big vehicles like vans. The private taxis were cars, not vans. Taking buses and trains would require many transfers with so much stuff we could barely carry it all. We plotted and schemed for an hour and a half trying to figure out how we would get Oliver and his chair home.
Ultimately, we tore the wheelchair entirely apart; removed everything we possibly could and squeezed our mountain of crap into a regular Uber. We held our suitcases on our laps for the hour-long commute and it was totally fine. We were ecstatic that we hadn’t had to take 3 hours of trains and buses to get home. But this won’t always be possible and I don’t yet know how we will navigate the hurdles that lie ahead.
So I am thankful for the “right now”. I am thankful for the ease we have at this stage when we can still carry him and change him on baby table and break down his chair far enough to fit it in a trunk. I am thankful for the strides we’ve made towards equality for people with disabilities in this country and will continue to advocate for even more change in that direction.
You are an awesome family, with 2 parents who refuse to give up, even whenit seems hopeless. I am so proud of you all! Much love and admiration to you, Suzi and to Conrad. Bug hugs and love to your beautiful boys…
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❤ Thank you for your endless support ❤ Hugs back to you!!
Love it when phone chooses its own way….BIG hugs and love, from Aunt Helen