CHAPTER THREE: The Driving Conundrum
“You can’t just make me different and then leave” ~John Green, Looking for Alaska
Baseball, Apple Pie, and Driving
There are a few things the average American teen expects from the high school experience. These may vary based on what movies said American teen has watched. As a proud member of Generation X, I grew up with movies like Heathers and Pump Up the Volume, so my expectations may have been slightly darker and much more focused on Christian Slater.
Most teens expect to have way too much homework and to feel very put-upon by said workload. They expect to have a job, probably. If they’re athletic, they expect to have a busy sports schedule and lots of practices and training. But perhaps the most universal expectation for high schoolers is that as soon as they turn 16 or (15.5 as the case seems to be now), literally the moment they blow out the candles, they learn how to drive. This is the great passing of the torch, the rite of passage. Once you learn how to drive, you can do anything.You are practically an adult, and you don’t know that you don’t want to be an adult.
I certainly had these expectations when I started high school. Of course I did. We all take some things for granted. I’ll learn how to drive, I’ll get married, I’ll have a horrifying 1.5 kids. I was a year younger than everyone because I started school when I was four instead of five (September baby for the win), so I was already raring to go. I started sitting in the driver’s seat in my parents’ cars just to get a feel for it. But this resulted in an unpleasant, if unsurprising, revelation. I could not reach the pedals and I could not see over the windshield. One of these at a minimum is necessary and generally speaking, one hopes to be able to do both.
Driving School
After realizing how far I was from being able to utilize the family cars, I completely skipped the concept of joining my classmates in the standard high school driving classes. I assumed that the driving lessons the high school offered would not be accessible to me because the car has to be as universally accessible as possible. Even if I had called, and let’s say even if I had gotten a chance to participate, I would have found the accessories of my accessibility (pedal extenders, pillows, books) humiliating. High school is a tough time to be really different from everyone else.
Given this, my parents suggested I call a local driving company and see what accommodations they could offer, so I did. The woman who answered the phone for the first company I called said, “Well, gosh, I don’t know. We have some phone books you could sit on.”
To me, this response seemed bereft of compassion and of humanity. It felt like I was being mocked by a stranger who hadn’t even looked at me. The mere concept of my needing help to drive was almost laughable. I felt hurt and hopeless.
The conundrum had arrived. I would need to get a car outfitted for me so that I could learn how to drive, but how could I get a car to drive before I knew how to drive? Worse, how could I afford both a car and the special accessories I was sure I would need as a definitely not wealthy 15-year-old?
How You Can Help
A lot has changed since I was in high school, so hopefully accessibility in driving has improved. I just looked up the driving school my high school offers and there is nothing about the vehicle at all, so perhaps not much has changed. If you have a child or a friend who is not what society deems “normal” for whatever reason, encourage them to talk to the person in charge and fight for accessibility. If they do not want to do this, do not judge. It is tiring having to fight for everything that seems obvious to you, and, like I said, accentuating differences in high school is often the stuff of later stress dreams. If the “normal” driver’s ed isn’t an option help the person find specialized trainers who will be properly equipped and compassionate.
A key facet of living with dwarfism or any other kind of “difference” is that you are given a choice, and I say this with delicacy and care. You can live as a constant victim because your life is not fair, or you can live as an advocate and fight for yourself.
This might sound like victim-blaming, but I do not intend it as such. It is justifiable to feel victimized when the entire world around you is not built for you. It most certainly is not fair. But you have to come to a point, or at least I have thought so, when you decide to make the world meet your needs insofar as is possible. You cannot just sit back and cry, because while that might purge the feelings it actually does not fix anything. It only makes you feel worse. The me of today would have reached out to many people in order to help myself learn how to drive. I was blessed with parents who did this for me and it has saved my life in many ways.
That Feeling of Dependence.
This driving conundrum stuck to me like glue until long after both college and grad school. I could not figure out how to untie the Gordian knot. Car first or drive first? How to drive first? How to get car first if can’t drive? Over and over again this circular enigma rattled my brain.
Throughout college and graduate school, I was entirely dependent on family and friends to get me where I needed to go. This once again contributed to my feelings of having no control over my own life. If someone was not available, I was out of luck. If out-of-state friends were coming back to Ohio but were within an hour of where I lived, I would not be able to see them most of the time. Still feeling like I was the center of the universe, I would feel very hurt that people would fail to travel two hours round trip to see me, so the bad feelings and the sentiment that I would never truly fit in anywhere unjustifiably continued. I did not know how much two hours of drive time was. It seemed easy enough in the passenger seat. Admittedly, perhaps my drama queen behavior continued on into my early twenties.
After graduate school, I moved back home and began the journey of finding a job. My college loans would need to have payments made within six months of me leaving school, which translated into me needing my dream job within six months–or so I thought. Dream job or not, I knew I would need to be able to get myself where I needed to go. I could no longer ask my friends and family to cart me around. I felt more than a little bit hopeless.
Wally Snyder, the Angel I Needed
One day, things began to look up. My mom mentioned that she had done some research, and in that magical way only moms can explain, she had found a driving instructor who specialized in teaching people how to drive who might not otherwise have a way to learn. His name was Wally Snyder, and while driving instructors may not often be associated with heroism, he remains one of my greatest heroes to this day.
Wally settled the car conundrum because he knew how to adapt his car for “different” drivers. I believe he had a stack of books and some pillows that I sat on. Wally was enormously patient, gentle, and calming. He had the innate gift of being able to tell what I was going to do before I did it, so if I was going to pull out too early or turn the wrong way, he would simply say, “mm mm,” and I would regroup. Wally spent an entire summer training me to pass the dreaded maneuverability test. Between my nervousness, my spatial awareness issues, and simply being a new driver, orange cones quickly became my nemesis.
One particular incident really showcases Wally’s remarkable empathy. After a particularly challenging lesson, I broke down into frustrated tears. I felt humiliated and tried to explain I was just really feeling the pressure to get this right. Wally’s patient demeanor never faltered through it all. I can’t remember what he said, but I remember feeling heard and understood. I was not ashamed to show up for my next lesson with him.
At long last, at the age of 25, I passed the written test, the driving test (on the second try), and the maneuverability test. I will never forget Wally Snyder’s role in my life and the fact that it was my mom who found him. Everybody could use a Wally Snyder.
Why I Hate Cars
I know there are many people who are passionately in love with their car or all cars. I have never liked cars. To me they have always been uncomfortable and scary. Yes, even with adaptive equipment.
Let’s start by discussing pedal extenders. These present a unique challenge for several reasons. First, most car dealerships are exceedingly uncomfortable adding or taking away anything from a car. In fact, the dealership where I bought my current car wouldn’t even add something to the trunk so that it would be easier for me to close. If you or someone you know needs pedal extensions, you most likely will need to find a uniquely certified company that specializes in this kind of work.
How You Can Help
This issue of car dealerships and liability is a significant problem for disabled drivers. I was shocked that my dealership would not add a hook or something to the trunk of my car so I could reach it when it was open. It’s not like I drive through the trunk. If you are someone handy with cars or if you know someone, take some time to hook up the disabled person in your life with some help. Make sure nothing dangerous is added, of course, but within reason, we need all the help we can get.
Pedal extenders make it virtually impossible for any other person to drive your car, so sharing driving responsibilities on a road trip is not really an option. Pedal extenders also add a lot of extra weight to the pedals. This means it’s very easy to go too fast, and it’s very easy to press on the brake too hard and come to a lurching stop. It takes a while to get used to. I also found that the pedal extenders would feel very slippery when wet, which was certainly disconcerting.
But even with the pedal extenders, I was not fully equipped to drive. I also had to have the seat all the way forward and I had to sit on something to bump me up higher. To drive my first car, I sat on a short stack of books and a pillow. Getting everything just right took a long time, and in order to see and reach the pedals, my stomach was pressed right into the steering wheel. I was fully aware, as all shorter-than-average people should be, that the airbag could easily break my neck if I got in an accident. Needless to say, driving was freeing in some ways but utterly horrifying in others.
The Size of a Child
For people with dwarfism, driving is inherently dangerous. All you really need to do to prove this is to Google “child seat guidelines”, most of which state that children should remain in a car seat until they are four feet nine inches. As a person who is a fully grown adult at four feet five inches, this is not workable for me.
This also points to many of the issues people who are smaller than average deal with in the driver’s seat. For example, I can flip the sun visor around all I want, but that doesn’t change the fact that it is designed to help someone whose head is at the headrest of the seat. Since I and others with dwarfism are too small for the sun visor to help, we are going to suffer a lot more from sun glare, especially in the winter. Even the best sunglasses can only do so much to help with this.
Seatbelts are another factor. The driver’s seatbelt is supposed to pass over the shoulder, a nice bony area that is very protected. The seatbelt comes closer to the neck on shorter-than-average people like me. Another fun thing I learned when I first started driving is that in a car accident with enough force, a seatbelt in that position can actually behead the driver. Obviously, this is not safe. Most cars simply do not possess a feasible workaround.
The Humiliation of Car Shopping
I have now been driving for close to ten years and have purchased two different cars. The first car buying experience was not too bad because I knew how to make a specific brand of car, the Toyota Camry, usable. I simply looked for that brand and went in that direction.Well, I got a Corolla, actually, but close enough. Frustratingly, more recent iterations of that model started to use bucket seats, which make it essentially not viable for me. On my second journey to buy a new car, II had the rather humiliating experience of carrying a pillow around and “trying on” numerous cars with the salesman who was helping me. He is another hero of mine. He was immensely patient as I explained that I was not quite comfortable, or that the curvature of the windshield made it harder for me to see. If you have never walked around a car dealership’s lot with a pillow in tow, well, you are lucky.
While my experience buying my current car–a Honda Fit–went about as well as it could have, even this vehicle is less than ideal. I don’t need pedal extensions in this model, but I do still need to sit on a pillow, and I am situated dangerously close to the steering wheel. I cannot see as well as you are supposed to over the windshield so I often miss curbs (or rather, I often hit curbs). However, for me it is as safe as I can hope for.
The Tip of the Iceberg
As extensive as all this seems, others with dwarfism need even more far-reaching accommodations to drive. Because I am on the taller end of the spectrum, I can get by with pedal extensions and sitting on a pillow. But many with Achondroplasia are smaller than I am, with a shorter reach both via the arms and legs. Their needs are greater than mine. Their cars sometimes need to be outfitted with hand controls instead of just pedal extenders and pillows. Many people need a special step to help them get in and out of their vehicles. Trunks are beyond inaccessible.
Driving gives us a great sense of freedom. There’s a seemingly throwaway line in the movie Mermaids that has always stuck out to me: “With a car, you have the freedom to go anywhere.”You can go to a party, and then when you realize the party is boring, you can just leave, Everybody deserves to have access to that kind of freedom. Hopefully, the auto industry will one day cater to someone who is not a 5’10 man. There are a lot of people in that category who find driving a little more difficult than it really should be.
How You Can Help
If you know someone who can’t drive, try to avoid being judgmental until you know all the facts. I am sure people came to resent my need to be driven everywhere even though they loved me. It’s a pain to be sure. But if the person you know is like me, they don’t like it any more than you do. They want control of their lives, and independence. Here’s to hoping we get there some day.