Meet Bertha. Big Blue Bertha if you’re feeling formal. She is finally, finally, after years of research and agencies and appointments and doctor referrals and funding negotiations and refusals and more meetings and two separate bids and test drives and waiting on forms and waiting on funding and waiting on more forms that weren’t filled out correctly the first time, and so much more waiting and red tape, she is ours.
This is actually the first new car I have ever owned in my life. And it’s the first car that is even in my name. I come from nothing and even the car that I lived in was a straight from the junkyard special with two kinds of paint and frame damage that made it so that if you opened the passenger side door you’d never get it closed again. For most of our married life we’ve made due with one car, or one car and something that had been passed through every one of Bear’s siblings. As our salary increased we’d get more recently used cars, but until this year we could only have made a new car work if we were willing to make major sacrifices and neither of us give a crap about cars, so we only cared about reliability.
But even once our finances stopped being so precarious, we couldn’t get a car that would suit Atti’s needs. The amount of work it takes to put in a lift or a ramp is mindboggling. The entire car needs to be changed to support the additional weight, seats and interior reconfigured, and that’s before you even get to the expense of the equipment itself. They are so expensive and they stay expensive because it is really really hard to find one on the used market. We’ve been making due with a van and my muscles.
Every time Atti has to go somewhere, I lift his lovable little 50 pound sack of potato self and put him in his car seat. Then I lift his equally heavy wheelchair into the back of the van. We drive to where we need to go, and then I lift the heavy wheelchair out of the back, bring it around to the side, lift him out of his wheelchair and get him all buckled in. Only after all that exercise do we get to actually run the errand we set out for. I don’t shop for fun. I never have days where I run errands. If I have to run two errands back to back that means I have to lift that damn wheelchair in or out of the car 8 times. If I buy something and it turns out to be wrong somehow, it usually just sits by the front door. Returns are more trouble than they’re worth. Amazon Prime is a gift sent straight from God.
But as I’ve thoroughly documented over the years, I am not a healthy person. I had major abdominal surgery in December. I have endometriosis and a host of other health problems and while I’m used to being in pain pretty much daily, the amount of pain I’ve been experiencing, when we just got the endo handled, has been alarming. I’ll write about this in more detail later, but I’ve gotten some new information about just how broken this dang body of mine is and one of the latest discoveries is that my neck is totally jacked. It’s so out of whack my spine is bent the wrong way. I bought a new bed, we changed my computer desk, and I’ve got some follow up to do, but carting a wheelchair around all the time was right at the top of the list for things to avoid if I want to keep from screaming.
LUCKILY! We were already well into the bureaucratic nightmare that is getting anything done with state agencies. So by the time we discovered my neck issue, I only had to wait about a month before the van was ready! And now here we are with my very first new car, with a ramp and special seatbelts, so I’ll almost never have to lift that wheelchair again.
We are so grateful to have such amazing people in Atti’s entourage to help us with this kind of thing. Until Betsy, our case worker at Alta Regional Center, we had no idea there were even agencies and vendors that would help us with this! We are overjoyed, and Atti is thrilled to be out of a booster seat and in charge of getting in and out of the car by himself. We are so lucky to live in California where programs like this exist and we have so much privilege to navigate those programs successfully. But even being white and native english speakers and upper class can only get you so far. I mention this not to be ungrateful, but because I want people who don’t have to navigate this world to know. There are so so many obstacles for the disabled that even all that privilege can’t get through it. For many people, buying a car is an exciting process. They dream about what kind of car they’ll get, what color, all the bells and whistles. For us, even with the agencies and programs that exist to help us, it is a ton of work. It took us nearly a year to get this van. We picked a make from a very short list of cars that would work. We picked a model and hoped for availability. Because we ended up working with a vendor that had a lot of resources we got the model we wanted but had to take the color they had on hand or pay for a different one to be shipped and pay a $1500 transportation fee. We decided the blue would be just fine.
We are so happy and so grateful, but it is never lost on me that this world is not built for people with disabilities. We are the lucky ones, with education and access and language and money to smooth the way, and the way is still so far from smooth.
But today was a win. So I’m going to try and ignore the bigotry and injustice that is a part of your life if you are disabled, I’m going to smile as Atti pushes his chair up that ramp, I’m going to strap him in, sit behind that wheel, and drive.