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What’s Endured when using Assistive Devices when you have an Invisible Disease…
I was over the moon when I was finally approved for the use of an electric scooter. My orthopedic doctors signed off, my occupational therapist signed off, and my insurance company covered enough to make it affordable. However, my joyfulness soon turned to angst. The looks, whispers, and glares over powered the joy my scooter brought me. One particular memory was during a recent weekend trip to Washington DC with my family.
Sightseeing in DC…Don’t Forget the Charger
Our first day of touring Washington DC with our exchange daughter from Germany and our son started out full of wonder and ended…well, let’s just say…not as wonderful. That morning I loaded up the backpack with the day’s essentials, grabbed some bottled water, and we headed out to the Metro. But wait… how does one get to or on the metro using a scooter?…we asked ourselves.
Luckily I had downloaded the Metro app on my phone and was easily able to search for the one, yes one, and only elevator that would take us below ground. I soon discovered that you needed to seek out the brown outhouse looking building that would be near the Metro entrance, but not at the actual entrance in order to find the elevator. We were able to spot it and made our way down below. Once underground I was directed to the next one and only elevator to get to the train platform. All I kept thinking was, “What if it breaks down and I get stuck down here?”.
I was getting very anxious as that thought kept running through my mind, so I began to distract myself by looking around and taking pictures of the kids. It was at that moment I took notice of those around me staring, and whispering. Most were looks of compassion, and sympathy, with some inquisitive questions by little ones to their parents.
No I didn’t Borrow it from Grandma…
However, the negative glares and stares came from the older generation. It was as if they were judging me with their eyes and disgruntle facial expressions, as to say, what gives
you the right. I felt like I needed to tape my DMV disability card to my forehead and wear a sign that listed my illnesses. Once the train came, I was just grateful that boarding and exiting
was easier than anticipated. Getting over those two hurdles helped calm my nerves as we ascended into the light of day through the “outhouse” Metro elevator.
Read the Map Upside RIGHT…
I typically have very good navigation skills, but the brain fog had set in from the anxiousness and trauma of the Metro causing me to look at the map wrong. I had north and south upside down. You wouldn’t think it would be a big deal since we were sightseeing anyway; a few extra blocks wouldn’t hurt. However, a few uphill blocks in the wrong direction would soon play their ugly hand in the game of sightseeing with a scooter.
I scooted up and down, block after block, in and out of museums, navigating at butt level the whole time, which is not the best point of view unless you are walking in a herd of animals. I had people step over my scooter, walk in front of me, bump me or even try to push me out of the way, and most hurtful of all were the disapproving looks I received. It was as if I was a nuisance and inconveniencing them instead of them being an inconvenience to me.
And Then it Happened…
It was time to make our way to dinner. I was scooting along, when this repetitive beep began and then the scooter came to a full stop. You got it; the battery was on its last leg. Remember the earlier subtitle…”Don’t Forget the Charger”…well we forgot the charger. I still had to make it several blocks to the restaurant, then to the Metro station and back to our hotel before the day was done.
My Husband is Truly a Gift from God…
So, my dear husband began pushing the scooter, as I drove in slow turtle speed.*
I did say DC has a lot of hills… well his calf muscles can surely attest to that fact. We arrived at Hard Rock Café, ate dinner, recharged ourselves, and hoped the battery possibly rested some too. Over dinner my husband and I had decided to put our twelve year old son in as the scooter driver. He weighs less than I and it would be a lot easier to push him up and down hills.
Something Strange Happened…
Soon it became apparent that the looks, whispers, and glares were different. My son was getting loving, compassionate, warm and fuzzy responses to his “needs” of riding a scooter. He even got to ride the Metro for free. But, what was the difference, I wondered. It was the same scooter, we were all the same people. Then it hit me; its because he is a child.
At my age, early forties, I am seen as lazy or a faker, but at his age of twelve, he is seen as a poor dear child with needs. It must be something terrible if a child has to use a scooter. There is just no other explanation. Now keep in mind, no one was asking him questions, or inquiring why, they just accepted it and knew he needed compassion.
Maybe if I let my hair grow out grey, and I quit dressing “young” and wear certain types of shoes, I would be considered “of age” for scooter riding. I mean where are the scooter guidelines?
Where is it stated that I have to look a certain age or be physically handicapped? What happened to honest compassion and caring for all people? Instead of judging or worst yet assuming you understand me, just be real and ask me how I am doing. Not all disabilities can be seen and not all people abuse the system. The majority of us with invisible, chronic illnesses no more want to have to use assistive devices, than people think we ought to have the right to use them.
Lessons Learned…
As our day came to a close I learned to make sure that I always have the scooter charger and that 
I have to be the better person. I can not let the glares, and whispers affect my peace of mind or steal my joy. I can educate others and I can be a better advocate for all my sisters and brothers who live with this dilemma each and every day. I will continue to roll through life on my scooter. On the bad days I will have to charge a little longer, but on the good days I will be in full rabbit mode!*
*Turtle and Rabbit mode refer to the speed setting on my scooter, so my kids and I coined the phrase full rabbit and slow turtle.
Written By: Tracie Denison-Felgentreu
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