How Expensive is That Minivan?
I want to talk about the extra expenses for anyone who deals with a physical disability. Dealing with the physical aspects of spinal muscular atrophy sometimes feels like a small part of the disease.
Granted, not being able to get up out of a chair and open the refrigerator to make myself a meal or grab a drink sucks. I don’t think most people realize that’s only a small portion of living with SMA.
The financial burden of living with SMA
The extra financial burden is something most people probably don’t think about for people like me. I’ll write about other financial burdens in the future. Today I want to focus on accessible vans.
When I turned 16, I was still pretty strong. I was still walking. I only used a wheelchair a handful of times, usually at large amusement parks where it was constant walking.
I passed my driver's test using a regular car. Well, now that car would be considered a classic. It was a 1982 Caprice Classic Station Wagon with a 3rd-row rear-facing seat. It was a true family truckster just like Clark Griswald had in National Lampoons Vacation.
Soon after I passed my driver’s test I bought my first car, a 1985 Cutlass for $600. This was thanks to my Mom who knew the guy selling it. This was 1993, but still, $600 for a car back then was a good deal.
After I graduated college and landed my first job, I wanted a new car. I bought a 2002 Ford Escape.
Increased issues with walking
At this point, I was having trouble walking any distance. Getting out of any low seating position was a struggle. The Escape is a small SUV and it provided me the height to get out of easily.
After about a year of owning that SUV, I was really struggling with walking. I kept a manual wheelchair in the back of my SUV. Anytime I went somewhere I needed someone to come get me to push me around.
The prices of a wheelchair-accessible van
This really started interfering with my independence. I finally bit the bullet and applied for a grant to get a wheelchair-accessible van.
I was blown away when I started to see the prices of these vans. Luckily I was approved for an OVR grant which covered the conversion of my van.
I was still strong enough to drive without any adaptations. The van gave me the independence that I was missing.
Losing the ability to drive
Over the years I got weaker and eventually lost my ability to drive. I was driving without any adaptations. When I started pricing out electronic driving controls, I couldn’t believe that it was between $50,000 to $80,000 to outfit my van.
That expense is on top of the cost of the actual wheelchair-accessible van which runs anywhere from $50,000 - $80,000 for a new van.
The freedom to drive comes with a high price
If I wanted the freedom of being able to drive I would need to spend well over $100,000. I’m not getting some exotic sports car. We are talking about a minivan or the new family truckster.
I know driving is a privilege and not a right. However, with prices like these, it puts the disabled community at a huge disadvantage.
Is self advocacy a part of your daily life?