A Work In Progress

Last Monday I received a brand-new wheelchair, to the casual observer this may sound like a fun and exciting development but the reality is much more complicated. Being a wheelchair user for over 10 years I have learned that getting new equipment can be quite a harrowing experience. First of all it’s important to realize just how long this process can take; we began pursuing new chairs for my brother and I, over eight months ago. We set out to simply replace our existing power-chairs which were beginning to show some wear after 6 years of every day use. It may appear rather obvious that individuals with chronic conditions should be able to replace their assistive technology without issue but the system makes it rather difficult. Getting these wheelchairs covered by our own insurance and Medicaid partially, required multiple letters medically justifying individual components, such as vehicle tie-down spots and custom seating. My mother a master at navigating these channels, had to make countless phone calls and sort through mountains of redundant paperwork. Let me be clear that I am extremely grateful that we have good insurance and that the government covers the rest of the cost but the process is painfully slow and confusing. Another factor that further delays getting these essential devices, are the wheelchair providers and manufacturers. We have developed a somewhat successful working relationship with our provider who is responsible for selling and repairing our chairs but like many wheelchair companies has flaws. We have come to realize that these businesses are only as good as their employees—some are absolutely phenomenal and others are far from. Regardless of the quality of personnel however, these companies are at the mercy of the equipment manufacturers. My wheelchair happens to be made by Invacare, a billion-dollar corporation with a captive market. My chair’s total cost is around $15,000 and despite being the cost of a small car, has nowhere near the innovation nor features of one (seriously, where is the Bluetooth and backup camera?). Even though Invacare is selling products crucial for mobility and freedom, they tend to be rather slow when it comes to shipping equipment and parts. The wheelchair industry continues to make a guaranteed profit but is not very fair or logical from a consumer standpoint. When someone needs to get a wheelchair they are basically held hostage to what their insurance will provide, although it is possible to get better technology it is substantially more expensive. All of my outrage for this bureaucratic maze aside, we did eventually get our new chairs. Getting used to a new wheelchair is a unique challenge unto itself—it’s a balancing act of comfort versus utility. Things like foot plate and armrest height or joystick distance can have a major effect my ability to operate my phone, my laptop or the wheelchair itself. Adjusting a wheelchair to fit properly is a tricky ordeal that requires a lot of patience, sometimes more than I have. Admittedly, during this transition period I can be downright mean. It takes time for my body to adapt to the changes but in the long run I usually end up more comfortable then when I began, as with most things in life it’s a constant work in progress. Later in the week I unfortunately encountered yet another setback; an electronic failure caused the tilt/recline mechanism to stop working. After only four days of having a new wheelchair a crucial component failed, I was unhappy to say the least. We were very lucky however to have our faithful service technician stop by right away to resolve the issue. Despite getting the chair to work again there was no guarantee the problem would not happen again, so I opted to go back to the old chair until Invacare ships new parts for repair sometime this week. To be honest I have been fairly enraged about this situation lately and the entire durable medical equipment system. The problems with the how the industry is set up has impacted my family multiple times but is just the tip of the iceberg. I have heard so many tragic stories from others much less privileged than myself, of just how bad things can be. There are individuals out there who have been waiting months for vital repairs and others who cannot get wheelchairs they desperately need. Life for disabled people has certainly gotten better over the years but the fight is far from over. In my opinion mobility is a basic right everyone is entitled to no matter their physical or economic situation.