As someone who has seen firsthand the effects cerebral palsy can have on those managing it, the family and the community, I can say with confidence that American culture is not catering to the disabled nearly as much as we think or are told.

Not only do these individuals have to worry about their own equipment, which they spend a majority of their time in, but also the obstacles of the modern infrastructure thrown in their way.

Both my cousins, Brock and Dylan, both now almost 18 years old, have been in and out of wheelchairs since birth. Brock’s situation is a bit more pressing as he has never had the ability to use his legs or walk with a walker like Dylan. Dylan has tried everything from walkers to a top of the line, complex, electric wheelchair.

It’s not necessarily the price of these high-end power and manual chairs that is causing the issue for users – rather, the companies and organizations distributing them.

Most people with CP sit in their chairs an average of 11 to 16 hours a day. There are so many daily things that do not fit or support a person afflicted with CP – car seats and bicycles for example. Cars do not provide the skin protection that many wheelchair users need, so many people have to sit on their wheelchair cushions while driving to avoid dangerous pressure sores.

The access to complex rehab technology, even when medically necessary, is very limited at times, and is only continuing to be threatened by Medicare reimbursement cutbacks. Because private insurance companies tend to use Medicare policies as guidelines, all wheelchair users are affected.

According to Josh Anderson, vice president of marketing for Permobil and former head of product management and marketing for TiLite, “Permobil U.S. and TiLite produce approximately 20,000 power chairs and 20,000 high end manual chairs respectively per year. These quantities are not enough to bring the price down,” says
Anderson.

The cost of manual wheelchairs depends, most of the time, on the amount of care that went into producing the chair. So we often see insurance companies jacking up the prices of inexpensive chairs, ultimately cheating the users and their families who are in need.

So what happens if the chair or any part of the chair breaks? My cousins have experienced this firsthand. Sometimes it can take up to six months to replace a part on a wheelchair, sometimes longer depending on the insurance company. Those on Medicare are unfortunately, to put it nicely, screwed. With all the cutbacks to the program, individuals who are seeking repairs can be put on waiting lists for months, forced to play phone tag with dealers and manufacturers. Not only does this put pressure on the family of the person afflicted with CP or any other inhibting disability, but it forces the disabled individual to sometimes put up with an uncomfortable chair or a chair that does not fit their needs.

How crazy is it that we live in a world where people can upgrade, repair or “pimp out” any autombile they desire, but we cannot manage to provide fundmental technology for people unable to walk? It boggles my mind and saddens me to my core to see my cousins have to struggle with this.

There are plenty of handicapped individuals living on their own who have to muster up enough courage to speak up for themselves and often times represent themselves to dealers, manufacturers and insurance companies. Without having anyone to advocate for them, they are forced to settle with subpar technology and chronic discomfort.

On the brighter side of things, as time and technology progresses, we are starting to see more complex and sustainable solutions to the manual and powered wheelchair being made at an affordable price in mass quantities.  This gives me hope. Japan is one of the leading countries in wheelchair technology, making giant leaps toward the future of power wheelchair design. The technology uses state-of-the-art mapping software and built-in sensors to help users avoid running into obstacles – similar to the technology that many automobiles contain.

The problem is, a lot of American insurance companies are still looking to U.S. manufacturers for wheelchair technology, often mediocre and low in price. The free market should be helping the disabled. The invisible hand of competition should be keeping prices reasonable, but that just is not the case today. With the price of wheelchairs, offered by insurance companies, being so expensive, people are forced to turn to fundraising to afford them.

These are things that people use every single day, just like cellphones. We see inexpensive yet highly reliable versions of cell phones and computers being made every year, yet we hardly ever see new, price-effective and accessible wheelchairs on the market.

Having a disability is financially punitive and there are so many people who are happy to capitalize on the issue for personal gain. This willingness to exploit customers is not necessarily unique to assistive technology and insurance companies.

As time progresses, hope continues to grow as more and more grassroot companies are attempting to provide affordable adaptive products and services.

The only real way to combat this problem is by advocating for others, putting the spotlight on the exploitation of the disabled and pushing proper legislation to stop the madness.

I would love to see the day, hopefully in my cousin’s lifetime, where we put the disabled and handicapped at the forefront of our cultural concerns and step up to do the right thing.