Living as independently as possible
Meet John. John was born with Cerebral Palsy and has needed a wheelchair for his entire life. From when he wakes up until when he goes to bed, his power wheelchair is his “legs.” He uses it to complete regular activities of daily living.
A caregiver helps John with basic daily activities for around 10 hours each day, but for the remaining approximately 14 hours a day, John’s not only independent, but on his own. Having an effective wheelchair is important at all times, and particularly when John is solo.
He also experiences dysphagia, or difficulty swallowing, which puts him at risk of choking. He is unable to move himself to a more forward leaning position to prevent choking due to having quadriplegia. The wheelchair power tilt and reclines/ pre-cline function enables him to move his upper body forward when necessary.
Q: Can you tell us a little about yourself? What do you enjoy doing?
I have some technical skills that I share through volunteer work at the farmer’s market.
I enjoy taking advantage of the beautiful natural area in which I live by spending time outdoors – whether it be riding ATVs or enjoying a sunny afternoon on a pontoon boat at my local lake.
Q: What do you rely on your power wheelchair for?
I take pride in doing things myself. I rely on the functioning of my power wheelchair every waking hour of my day. It helps me to live as independently as possible without relying on 24/7 support from my caregiver.
Without a power chair I would not be able to get myself around to complete regular activities of daily living. For starters, I would not be able to move at all. I use my wheelchair so that I can sit and observe my environment. Also, if I go out anywhere, such as grocery shopping, I need my wheelchair. My powerchair is tailored to me so much that there’s not a position outside of the chair that matches the comfort I feel while in my correctly fitted powerchair.
Q: Why did you need a new power wheelchair?
My former wheelchair was six to seven years old and left bruises on my body because the cushions were so deteriorated. I was sitting against bare metal.
On top of that, the informational display, which told me which gear I was in or how much battery life was remaining, was gone – posing a safety risk for my caregivers and me. It left me vulnerable to getting stuck outside with dead batteries because I was unable to monitor my battery level. It was very uneasy feeling not knowing whether I would have enough power in my battery to return back to my home without needing to ask somebody else to push my wheelchair to a safe location.
The informational display also displays other vital information such as gear selections — fast or slow or even tilt forward and back. Due to my cerebral palsy I get really tense in certain situations causing me to freeze in place. If I am out in public, I would much rather prefer to have somebody help me get across busy intersections. But, my former wheelchair did not have the drive selection information and, therefore, it was difficult for someone to help me safely operate my chair because they were unaware whether it is going to go fast slow or tilt forward and backwards.
My old wheelchair also didn’t allow me to lean forward on my own–because it did not have that power function at all. I needed the help of a caregiver placing a pillow behind my back to eat or participate in almost any activity that involved a table.
Q: What happened after you reached out to Disability Rights Oregon for help?
After a few hearings and negotiations, we successfully advocated for my request to Care Oregon for a new wheelchair. They helped get me the chair that I desperately needed. It has power functions that will make sure that I don’t choke.
Q: What would you want other people in similar situations to keep in mind?
I want other people who may be in similar situations to stand up for what they’re entitled to. Don’t give up – keep pushing for what you know is right.