The Transit Problem:

Since starting my second stint as a full time wheelchair user in November, a lot has changed in my abilities, lifestyle, and needs than when I previously used a wheelchair in college. I now live in an area that has very little public transit, non-localized services, and pretty hot weather. Gone are the days of wheeling out of my accessible dorm onto an accessible bus to an accessible store or to class. Now, to even get to the street in front of my house I need a car or someone to help me get down safely as we live on a hill (yay -_-). I live in a residential area on top a rather small “mountain” (hill) where the only conceivable things I could roll to with my Smartdrive are a gas station, a pool, and some schools. Additionally, I have lost most of the motor control of my legs and some of my core making driving with my feet impossible. This also means I could no long load my almost 40 lb wheelchair into my car alone anymore. So what next?

Can I Drive?

At first we knew the answer was no. My body was going haywire, I was dealing with new and unexpected issues, I had no idea what my body could and couldn’t do and it seemed like anything I did resulted in increased symptoms. But as time went on and treatment changed I started to have a better feel for my body I started thinking about driving again. I talked to my family, my doctors, my physical therapists and the suggestion of completing a driving rehabilitation assessment was proposed to determine if it was safe. From that, it was determined that I could safely drive using hand controls, a spinner knob, and a car with an automatic transmission. I recommend anyone considering driving with a disability get an evaluation from a non-biased professional.

The Process:

For many months, I just didn’t drive and my parents broke down my chair and lugged it into whatever car we drove, rinse and repeat. This was partly because I was unsure of my condition and if it would be safe for me to drive and partly because I couldn’t drive my beloved Prius or load my chair into her independently. As we started to gain more information about my condition and stabilize me we began looking at options — and boy were there many! At first, we looked at ways to adapt my Prius to be able to load my chair independently (we knew we could add the hand controls into almost any automatic transmission car so this was the main challenge). My family of engineers rather quickly determined this was not going to work.

We then shifted gears to selling my car and getting a used car that could be adapted with a lift to help me get my chair into a car. From that we found that minivans, pickup trucks, and Mazda 5s were commonly the vehicle for manual wheelchair users who don’t load their chairs the typical way (breaking it down and lifting it across your body into a seat). People were incredibly creative, building their own lift systems like the one below.

We then found out that the Mazda 5 (sliding door is key) had a specific lift that is designed to pick up your chair with a robotic arm and lift it into the space where a rear passenger’s seat would be. For me, this seemed like a great option — I didn’t have to drive a minivan or a truck! Though some of the truck adaptations are crazy cool looking like this and this I just really didn’t want a truck. So we set out looking for a Mazda 5 and reading up on lifts. Well, they don’t make Mazda 5s anymore and stopped in 2015 and they are very hard to find with decent mileage. So then we looked at minivans. I thought, that since I could stand with support and was decently strong, that if I got a minivan and removed the bucket seat behind the driver’s seat I could just fling my wheelchair up in there and yaaay, I would be done. I even found a few wise souls on the internet proving it could be done. So, we went to Carmax and tried it. I did not have the balance or strength and my chair was just too darn heavy.

Denial

After I had eliminated all the reasonably priced and homemade options I resigned myself to being driven around forever and having whatever poor family member or Uber driver transporting me have to breakdown and lift my chair. And I am incredibly blessed to have the resources and the privilege for that to even be an option. After a couple weeks of mulling it over and tossing around random ideas like “what if I brought a lighter chair and minivan and I could maybe lift it in and it would solve all my problems”. Except not. You can only get a new wheelchair every 4-5 years through insurance and if I were to try and get a new chair that would be light enough for me to lift it would be around $6,000. Plus a minivan. Yeah no.

Out of curiosity my mom and I decided to visit a mobility vehicle dealer to see what the lifts looked like, how much they cost, what cars they could go in, etc. We talked with a dealer about our challenges and frustrations and his answer was, “if you want the safest, quickest, and most efficient way in and out of a vehicle, a wheelchair accessible van with a ramp is the way to go”. Well surprise, surprise I thought. Of course they would recommend that, its the most expensive option — its basic marketing! Being the frugal family we are our gut was no, no we don’t need something like that.

The Direction Change

As we thought more about my needs and future we started to shift our mindset towards getting a wheelchair accessible vehicle. We considered the weather, ability to transport myself and others, ease of getting in and out, speed of getting in and out, potential for needing a power wheelchair, potential of progression of disease, reliability, cost, versatility, and resale value. For someone like me with fluctuating conditions, unsure prognosis, aging parents, and a very hot rainy location having a vehicle that could get me in and out quickly and safely was a game changer. While there are some wheelchair accessible SUVs, they’re not great for bigger wheelchairs or power chairs yet — though rumor has it the next 5 years will bring some great new conversions.

If I got a power chair, I could easily drive it into my van and could drive from it or be a passenger without needing expensive modifications or a new car. If my parents became unable to lift my wheelchair into a trunk, they could still drive me around. When its raining, no one has to be exposed to the weather to breakdown, load, and unload my chair. If I want to drive my family and my 88 year old grandpa we can fit my chair, his walker and 5 people comfortably. While I wasn’t super stoked about it being a minivan, the potential for it to transport me and my current and future family places for years to come outweighed its uninventive style.

Embracing the Minivan with Class

Accessible vans are very expensive. Prices are two parts: the base price of the vehicle and the price of the conversion. Conversion means taking out the bottom part of the car and lowering it so the interior is tall enough to accommodate someone sitting in a wheelchair, adding a kneeling system so the car lowers down to lessen the ramp angle, and adding in a ramp. The conversions alone usually cost 20-40K and do not include any other modifications (transfer seat, hand controls, switches, etc). Because of all of this, new WAVs usually run in the 60-80K range. As I mentioned in my Adapted Driving Test, Devices, and Vehicles post, there are funding opportunities, grants, and resources available to help offset this cost. That being said, it has been one of the best investments my family has made for my independence. Even when I am not driving, my van is my freedom.

For a full post about my van, what adaptations I use to drive, and the ways we use the van check out my They See Me Rollin post! (when I finish it)