I watched a video earlier about a woman who uses a wheelchair full-time because of her disability. She was having a new wheelchair made, and someone asked how long she had been using her current one. She said more than five years. As those of us who use assistive devices know, insurance generally expects durable medical equipment such as wheelchairs to last for years before it will consider replacing them.
Then she was asked how much her wheelchair cost. It was not a power chair, but a custom manual wheelchair designed for someone who uses it full-time. She said it cost more than $10,000 when she got it, and that the replacement would cost over $13,000.
Think about that for a moment. She sat in that wheelchair every single day for more than five years. She used it inside her home, going to work, outdoors, indoors, and even in the shower. That is more than 1,825 days of constant use.
First, the fact that a manual wheelchair can cost more than $10,000 is astonishing when you consider that this is not some luxury item. It is a piece of equipment that allows a person to live their life. Yes, her insurance covered it, but by the end of those five years, it was worn down and needed to be replaced. In some ways, it is like being expected to wear the same pair of shoes every single day for five years.
That made me think back to when I used to get my orthopedic shoes through insurance. They cost about $500 a pair, and insurance would provide one pair each year. These were not ordinary shoes. They had orthopedic bracing built into them, so I couldn’t simply go to a shoe store and replace them when they wore out.
And I wore that one pair every single day. By the end of the year, they were usually in shreds. Unfortunately, when it was finally time for a replacement, the approval and fabrication process could take another six to eight months. In reality, that meant I sometimes wore the same pair of orthopedic shoes every day for a year and a half or longer. I certainly didn’t have an extra $500 lying around to purchase a second pair myself.
And trust me, these were some of the most butt-ugly shoes you have ever seen in your life. They definitely did not go well with professional work clothes! Still, they were leather, and every Sunday night I cleaned and polished them so they would look as presentable as possible for work. By about the ninth month, I usually had to start using black shoe dye to cover the scuffs, cracks, and worn areas. By the end of the year, and especially during the additional months I was waiting for the next pair, keeping them presentable became almost impossible. Black duct tape helped hold that pair together at that point.
More importantly, their appearance wasn’t the real problem. The orthopedic support and bracing wore down, too. As the shoes deteriorated, they stopped providing the support they were supposed to provide, and those were often the periods when I was more likely to fall or injure myself.
Most people don’t have to wear the same pair of shoes every single day for 360, 500, or 600 days. If their shoes wear out, they buy another pair. If they need different shoes for work, exercise, bad weather, or a special occasion, they probably have them.
When an assistive device is medically necessary, however, replacing it isn’t always as simple as recognizing that it is worn out and buying another one. There may be insurance requirements, medical documentation, evaluations, prescriptions, prior authorizations, vendors, fittings, fabrication, and months of waiting. Meanwhile, the person still needs that equipment every single day.
Everyone goes through difficulties, and I realize that. I am not sharing this because I think it is some extraordinary hardship that outweighs anyone else’s problems. I am sharing it because it is one of the countless ordinary realities of living with a disability that people who have never needed assistive equipment may simply never have had a reason to think about.
That is one reason disability awareness matters. It isn’t about deciding whose life is harder. It is about understanding that other people may encounter obstacles we have never experienced and may not even know exist.
Other people face struggles, too, of course, and their struggles deserve to be heard as well. Learning about the difficulties someone else faces does not diminish our own. The more we understand about one another’s lives, the more empathy we can have for one another. Sometimes empathy begins with something as simple as learning about a problem we never knew existed.
