Adjusting the steering wheel in a vehicle. Getting a dress or tuxedo fitted for a wedding you‘re in. Adjusting the height of an office chair. Lowering the rail on a baby crib. Reclining or straightening a seat in a car. Raising or lowering shelves in a closet. What do all these things have in common? They are adjusted to fit needs of an individual. People adjust things to meet their needs all the time. While most of the time, adjustments are so minor that people don’t even realize that they’re making the change, some adjustments can have more of an impact. For many people with physical disabilities, making adjustments is a major part of our lives.

As I’ve explained in many of my previous entries, durable medical equipment became part of my life at a very young age. From strollers, to wheelchairs, to standing frames, to shower/commode chairs, I’ve had lots of different equipment over the years. Each time I need a new piece of equipment, most times I have to be evaluated by a physical therapist. Based on their evaluation, they make recommendations and justifications to the insurance company. When I was younger and receiving therapy regularly, it made sense because the therapist knew how my body worked because they had worked with me for a long time. Many times, therapists recommend things based off “proper” positioning. In other words, they make suggestions that would help people sit the “right way.”  This was the case especially when I young.

With my type of cerebral palsy, if my body is forced into a certain position, it will fight it hardcore. It’s been that way all of my life—it’s just how my body works. For years and years, therapists insisted on things like foot straps to hold my feet on foot pedals. Each time my feet were strapped down, not only would I loose fine motor abilities because my body was fighting so hard against the straps, I’d often push so hard against the straps and foot pedals, they’d break. This happened so frequently when I was a kid. I got so mad at therapists because they kept strapping my feet down. I understand they were doing it for my own good trying to get my posture as straight as possible to prevent complications later, but it, in my mind, it wasn’t worth it.

Another example was when I got a new wheelchair when I was in college. We had to work with a new Assistive Technology Professional (that’s what they call the people who sell DME now) Because the people we worked with before had left.  We still had a therapist who had worked with me for several years, so he was able to help with the evaluation. Well, long story short, this ATP had it set in her mind that I had to have this very customized seating system. I had to sit in this machine that took imprints of my buttocks and she insisted that I needed a pummel (hump) between my legs to prevent them from crossing. Let’s just say, that was my worst chair ever! The pummel didn’t prevent my legs from crossing, and it actually caused me more problems. The seating ended up being just awful and didn’t support my body. Needless to say, we were very happy when that ATP left!

The wheelchair I got after that one was a much better experience. I worked with a new ATP, and, although we had to work with a physical therapist who had never worked with me before (because by that time, therapy had stopped being covered by insurance), they both seemed to finally understand that function was more important than proper posture. Both of them actually listened to me and understood that being able to function to my fullest ability was more important than preserving proper body mechanics at this stage in my life. It was so nice to finally have people who didn’t push my body into ways that just didn’t work. No, my spine wasn’t straight and my legs were rotated in, but you know what? I could continue to do as much as possible independently, and that was what was important to me!

I just got a new wheelchair a few weeks ago. Back in February or March, I needed some minor repairs done on my old one, and, to my surprise, my ATP said he thought it was time for a new wheelchair. I only had had my wheelchair for about seven years. I had heard that Medicaid only pays for one every 10 years or so. He explained that the parts needed to fix my chair were starting to be discontinued, and the he thought he could write a justification that’d be approved by Medicaid based on my needs. Again, we met with another therapist who hadn’t worked with me before, but it worked out even better this time because my ATP had gotten to know my body over the years and he worked with the therapist to write the justification.

Medicaid approved almost everything they recommended this time—even the elevate feature. I picked out the color of the fenders (purple this time!) and it was ordered. The joystick was back ordered, so, after a few weeks, the company decided to send an upgraded one (it has flashers, headlights, and turn signals—it’s truly like a vehicle). My ATP assembled it and then made an appointment for me to come in. From previous chairs, we know that wheelchair appointments take awhile when getting a new one. The ATP has to have me in the chair and make adjustments according to my body and preferences. Again, we were all on the same page this time—it’s all about function and comfort rather than proper positioning.

We were at the wheelchair place for over five-and-a-half hours this time. Many of the adjustments and adaptations were unconventional. For example, while I don’t like my feet strapped to the footplate, I do need something really strong attached to the footplate that I can push my feet on in order to push myself back in the chair. It sounds really weird and it’s hard to explain, but it’s just one of the unique things I need. On my old chair, my dad took a piece of piping and bolted it onto the footplate. The ATP couldn’t find pieces like that anywhere anymore, so, what he ended up doing is taking two armrest pieces from an old scooter they had in the back, bolted them together, and then bolted it onto the footplate. It works great for me! Unconventional? Yes, but oh so functional!

My wheelchair is just one example of where, especially as I get older, functionality is way more important than the proper or customary ways. I’m learning this is true in almost every aspect of my life. From wearing tennis shoes to weddings, to having people break the binding on books so the book stays open for me (yes, I do that), to making sure caregivers don’t zip the zip lock baggies when they make my lunch so I can grab and dump the things onto the table, there are hundreds of unconventional things I do so I can be as independent as possible! As people say, “if it works, that’s all that matters!”  That statement couldn’t be truer in my life!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.