BEYOND THE PAVEMENT
JANUARY 3, 2024
Nerissa is one of the original GRIT Freedom Chair Trailblazers. Her journey with chronic illness has made her very passionate about helping other people get the most out of life despite a disabling condition.
What is that old saying? “You can’t choose what happens to you, but you can choose how you react to it.” I didn’t choose to get sick. I didn’t choose to experience chronic pain, widespread inflammation, motor control difficulties, and more. I didn’t choose any of that, but I choose to use a wheelchair.
Yes, you read that correctly. Technically, most everyone you see in a wheelchair has chosen to use it. Phrases like “wheelchair bound” have given people the impression that those in wheelchairs are stuck in them with no choice. However, we all have a choice whether or not to utilize one to mitigate our disability. Not choosing to use a wheelchair, though, would leave us with little to no quality of life. It is unfortunate that the wheelchair has become an international symbol of disability, when in fact it’s the wheelchair itself that ENABLES an individual to maintain a fulfilling life in spite of illness or injury.
There is a gray area in which a large population of wheelchair users live. It’s an area that most people don’t understand because it’s seldom openly discussed for fear of judgment. In this gray area resides the Part-Time Wheelchair Users. I technically fall into this category, although, I do use my wheelchair in about 75% of my life activities. Part-Timers are wheelchair users who can walk. At first this seems like a paradoxical statement. Why would you use a wheelchair if you can walk?
Because types of illness and disability vary greatly, the specific answer to that question varies from person to person. However, a large portion of society immediately jumps to the negative, particularly if the Part-Time Wheelchair User is someone who otherwise appears young and healthy. They might assume we Part-Timers are faking or exaggerating our medical condition in order to get attention or some other perceived benefit reserved for those with a visible disability. You might think someone standing up out of their wheelchair and then getting on a ride at an amusement park is faking just to skip a line. Perhaps, though, you might consider that many chronic illnesses cause temperature sensitivity and that can lead to medical crisis if not managed. Utilizing their wheelchair and being able to skip the line allows them to enjoy the ride, return to a safe place to rest a bit, then journey out for more fun. This gives them an enjoyable day with friends and family instead of a day at home or one that ends in the E.R.
Another group of people (often you will even find doctors in this category) seem to take the stance (no pun intended) that using a wheelchair means you are lazy, or that it is you “giving up” and allowing your illness to win. Personally, I take the stance that using a wheelchair is a form of FIGHTING my illness. My illness is what causes me pain, makes me fatigued, and makes my gait unpredictable. My illness is what causes me to make excuses to avoid social situations or cancel plans last minute because of a flare up. My illness is what initially took away hiking and dancing. Using my wheelchair, though, I can say, “Illness, do your worst! You aren’t stopping me from living life!” I do things with my wheelchair I couldn’t have done otherwise. I’ve danced again in my wheelchair, and I can hike with my GRIT Freedom Chair. To me, that’s the complete opposite of giving up.
When I first started using a wheelchair occasionally, I was constantly hearing the phrase “Use it, or lose it!” If you can still walk and stand short distances and are considering using a wheelchair, you’ve likely heard the same thing. First of all, beginning to use a wheelchair for longer outings doesn’t mean you can’t still walk the short distances when you are able. It’s not an all-or-nothing thing! “Use it or lose it!” What if the thing you were about to lose was your marriage? My friend, Renee R., told me about what led to her ultimately deciding to start using a wheelchair:
“I chose to start using one to save my marriage, literally. I’d gotten to the point where I was basically homebound because I’d flare so much from standing and walking from even basic errands. So I stopped doing stuff and it nearly destroyed my marriage . . . even basic errands can cause me to be debilitated for hours and even days afterward. . . Using a wheelchair I can go to museums and even Disneyland . . . using the chair allows me to even contemplate going where before I couldn’t even think of.”
That’s not to say that using a wheelchair is easy. This world still has a long way to go regarding accessibility. For example, I reserved an ADA standard hotel room and booked the free hotel shuttle from the airport, only to find out when they came to pick me up that NONE of their shuttle buses are equipped with a wheelchair lift. For me, though, using a wheelchair is much easier than the alternative. It gives me a level of independence and activity I couldn’t fathom without it given my current health. Utilizing my wheelchair, I can take my dog out to RUN and I can keep up with him (mostly, LOL)! When a wheelchair allows you to enjoy more of life than you could without it, when what it adds to your life exceeds any accessibility barriers you come across, then you need it. It really is that simple.
The benefits I’ve received from using my wheelchair far outweigh the judgment and the negativity from others. Ultimately, the choice to use a wheelchair is up to the individual. Everyone has a different life, different priorities, and different dreams. It’s important to make your decision based on what will allow YOU to get the most out of YOUR life, versus making a decision based on other people’s perceptions. In this world, you will never be able to please everyone, so your first priority needs to be your own well-being. I don’t live a full life IN SPITE of my wheelchair; I am able to live a full and active life BECAUSE I choose to use a wheelchair.
