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One of the original GRIT Freedom Chair Trailblazers, Nerissa, now works as GRIT's Administrative Assistant. Her own journey with chronic illness has made her very passionate about helping other people get the most out of life in spite of a disabling condition.
What’s that saying? "You can't choose what happens to you, but you can choose how you react to it." She didn't choose to get sick. She didn't choose to experience chronic pain, widespread inflammation, motor control difficulties, and a lot more. She didn't choose any of that, but she choose to use a wheelchair.
That'scorrect. 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. From my point of view, not choosing to use a wheelchair leaves us with little to no quality of life. It’s unfortunate that the wheelchair has become an international symbol of disability, when, in fact, wheelchairs ENABLE an individual to maintain a fulfilling life in spite of illness or injury.
However, there’s a gray area in which a large population of wheelchair users live. It's an area that most people don't understand. It's seldom openly discussed for fear of judgment. In this gray area resides the Part-Time Wheelchair Users. Nerrisa technically falls into this category, although, she does use her wheelchair in about 75% of her life activities. Part-Timers are wheelchair users who can walk.
At first this may seem 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 often assume Part-Timers are faking or exaggerating their 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, then getting on an amusement park ride is faking just to skip a line.
But consider this - many chronic illnesses cause temperature sensitivity 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 doctors fall in this category - take the position that using a wheelchair means you are lazy or "giving up" and allowing your illness to win. I’m the opposite. Using a wheelchair is a form of FIGHTING my illness, an illness that causes daily pain, fatigues me regularly, and makes my gait unpredictable. This illness can easily cause me to isolate or make excuses to avoid social situations or cancel plans last minute because of a flare up. It’s what initially took away hiking and dancing. Using her wheelchair, though, Nerrisa can say, "Illness, do your worst! You aren't stopping me from living life!" she has danced again in her wheelchair, and she hikes with her GRIT Freedom Chair. To me, that's the complete opposite of giving up.
When she first started using a wheelchair occasionally, she constantly heard the phrase "Use it, or lose it!" If you can still walk and stand short distances but are considering using a wheelchair, you’ll likely hear the same thing. However, using 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? Nerrisa’s friend told her 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 become debilitated for hours and even days afterwards . . . 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."
But please remember – using a wheelchair isn’t easy. This world still has a long way to go regarding accessibility. For example, a person I know reserved an ADA standard hotel room and booked the free hotel shuttle from the airport, only to find out when they came to pick him up that NONE of their shuttle buses were equipped with a wheelchair lift. In spite of this, using a wheelchair is much easier than the alternative. It creates a level of independence and activity you can’t fathom without it, especially given many walking-challenged heath conditions. Utilizing a wheelchair, you can take your dog out to RUN and maybe even keep up with it! When a wheelchair allows you to enjoy more of life than you could without it, when the enrichment it adds to your life exceeds any accessibility barriers you come across, then you need it.
It really is that simple.
The benefits received from using a 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’re never able to please everyone, so your first priority needs to be your own well-being. Don't live a full life IN SPITE of a wheelchair; live a full and active life BECAUSE of choosing to use a wheelchair.