Living with disability makes everything more expensive

I’ve been saving for a new van with my ABLE savings account because my current one is getting crotchety and old. It’s not breaking down all over the place, but I want to replace it before it gets to that point.

If you want to save for yourself or a disabled loved one, I recommend checking out ABLE accounts, which are tax-advantaged savings accounts for people with disabilities and their families that don’t affect government benefits.

Because I have Friedreich’s ataxia (FA), I drive an accessible van with the following features: a ramp for getting in and out, hand controls, and a driver’s seat that moves back and turns so that I can transfer to and from my wheelchair.

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A quick Google search for the vehicle I want — an accessible Toyota Sienna with as low mileage as possible — shows that it costs about $82,000. That’s about $30,000 more than we paid for my current van.

For comparison, when I Google a standard 2024 Toyota Sienna without accessible features, it costs about $38,000. So the adaptations I need require me to spend about $44,000 more on a car than I would without them.

But it’s not just a van that’s costly

This price is only one of the expenses that make my life more costly because I’m disabled and chronically ill. Others include home modifications (I’m lucky enough to own a home, a privilege I recognize), mobility equipment, adaptive equipment, doctor appointments (including traveling to a specialist for my rare disease), and an inability to work full time, among others.

I’m not whining, as many of these products are expensive to make and therefore cost more. But I do want to commiserate. If you’re like me and are feeling the pocketbook pain of having a rare disease or disability, I understand. It’s a genuine concern.

It’s been quantified, too, in several reports that you can read from the Orphanet Journal of Rare Diseases, the National Disability Institute, and Friedreich’s Ataxia News.

I’m only a fraction of the way to my savings goal of $80,000, but I’ll get there. These adaptive things I spend money on benefit me tremendously. It’s helpful to keep my focus on the benefits I get and not how much more I have to spend than someone who isn’t disabled. To sum it up, the van may be expensive, but I’m worth it.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.