Sunday I was a klutz and ended up with a badly sprained
ankle. That day and the next were characterized by ice, rest, ace bandages and
watching my ankle swell and turn 6 shades of purple. It wasn’t broken and
thankfully, I was blessed with family who immediately dropped what they were
doing to help me heal. Tuesday I had several work related meetings that had to
happen, but once again was supported with people driving me places and taking
care of all the household duties to minimize my time on my feet. The ankle
continued to ache when I put weight on it and stairs were absolutely miserable.
I began a form of limp/hopping which was tiring, but not as painful. However,
Wednesday I had to travel to Orlando for work. Once again, people pitched in to
make the process as easy as possible and my coworkers were very thoughtful
about our schedule, giving me an extra chair to prop my foot on during the
meeting and moving our meals to locations that were closer to the hotel so I
didn’t have to hop so far. While my leg was feeling better, the long walks in
the terminals in Orlando and Indy, carrying a heavy bag over my shoulder didn’t
sound like fun. So, just like the flight from Indianapolis, I asked for a
wheelchair in Orlando when I got my boarding pass. This process meant having an
airline worker push me in a wheelchair through the airport (including the expedited
line through security) and leaving me at the gate with a priority board pass. I
would be the first on the plane, choose any seat I wanted and have a wheelchair
waiting for me in Indianapolis waiting to take me to the curb. However, unlike
the flight to Indy, where I waited
about 45 minutes in the chair, in Orlando I was going to wait over four hours.
Placed by the windows, I quickly saw that moving around was
going to be hard. I rolled my wheelchair up to a blocked aisle way and asked
the woman if she could momentarily move her things so I could get to the
bathroom. Not only did she move her stuff, she offered to push me all the way
to the ladies room. I quickly accepted her help and appreciated her maneuvering
skills to the wider aisles of the airport. However, once positioned near the
stall, she left me on my own.
I came out of the restroom and got back in my chair. Part of
me knew I could hobbled around more easily than try to spend the next hours in
a wheelchair, but another part of me wanted to know what it was like to
experience this type of hardship, even just for a few hours.
My cousin as Cerebral Palsy and spent much of his youth in a
wheelchair. As a kid, I was jealous of the attention it brought him, how he got
moved to the front of the line immediately and how his therapy sounded awesome,
like horseback riding and swimming. But I knew his life, which will most likely
end tragically early as his body slowly shuts down, was not all about people
serving him. This experiment was in no way meant to trivialize people with
disabilities, but rather help me better appreciate what so many disabled people
have to live with their whole lives.
First, everyone stares at you. Everyone. I’ve got an air
cast on my leg, so it doesn’t take them long to figure out “what’s wrong with
me” but they make no effort to disguise that they are searching for the reason
I am sitting in this chair. There is a very real sense of being examined by
almost everyone who walks by. Not only do they stare at you, they stare DOWN at
you. Sitting in this chair, everyone expect the smallest children are taller
than me. This downward gaze reflected pity, curiosity, judgment and even drew a
few smirks.
Second, you have to ask for help. I rolled myself from the
ladies room to the snack area, knowing I wouldn’t get to eat again until very
late tonight. The aisle ways in the airport convenience store were not wide
enough for my chair and I couldn’t reach anything except the shelf right at arm
level. To get a chobani yogurt, a fruit
cup and a bottle of Pellegrino required me asking the clerk to get these things
for me. She quickly responded as was very pleasant and helpful, but I quickly
noticed that despite all the ADA laws, the stores and dining facilities within
the airport were not wheelchair accessible.
This led me to another quick realization. ADA laws provide
minimum requirements and most establishments tend towards that minimum. While
the people who pushed my wheelchair for me were able to navigate the aisles
pretty easily, wheelchairs require skill. The woman who helped push me to the
bathroom bumped me into several walls and trashcans, as she was a novice at
pushing wheelchairs. When I was pushing myself, I could barely navigate the bathroom
aisle way and curved door. Yes, the wheelchair could technically fit, but it
was by no means spacious. I was struggling to move around and wondered how fast
the wheelchair learning curve is for most people.
I decided to take a trip to Starbucks. This involved
wheeling myself about a quarter of a mile to the Starbucks location, at the far
end of the food court. Within just a few minutes, I was tired and my arms were
aching. Thankfully, I received a work phone call and got a 13 minute break
while talking on the phone before moving forward. Rolling my own wheelchair
meant I could only do that one thing. Both hands were occupied and my full
concentration and physical effort was on my movements. I learned quickly that
short rotations of the wheels was easier than long pushes and that this
wheelchair favored the left side, requiring me to constantly realign towards
the right to go in a straight line. While some people moved for me, there were
lots of oblivious people who nearly ran into me because they were walking
quickly and not looking down. At Starbucks, it was obvious that their line was
not going to work for me. It wound back and forth, which would require four 180
degree turns. Even if the aisles were wide enough (which I highly doubted) I
was not skilled enough to travel through them. So instead, I waited for
everyone in line to clear out of the way and then rolled up through the exit.
Once I ordered, I had to back up blindly, trying not to hit their shelves and
signs positioned near the line to try to inspire impulse purchases. With no
seating area near the Starbucks, I decided to roll all the way back to the gate
and was determined to do it without stopping. I was becoming a better navigator
in the chair, but once again, my arms were quickly tired and I was forming
blisters on my left hand, which had to grip the wheel more tightly due to the
poor alignment issues. Once back at the gate, I was happy to lock my wheels and
enjoy the well-earned spoils of my efforts. My apple watch registered my accelerated
heart rate and gave me exercise credit for the effort required to move just a
half mile round trip. The whole trip (not including my 13 minute phone call)
was 22 minutes. At least twice as long as it would have taken me if I had been
walking.
Having exhausted myself, I was now content to sit and read
while I waited for the boarding of my plane to begin. After another hour of
just sitting and reading, I realize that the Starbucks has created a need to go
back to the ladies room one more time before boarding the plane. I roll myself
into the restroom to discover the handicap stall is closed. I decide that is
more important that I don’t wet my pants, rather than stick to my experiment,
so I go ahead and stand up and hop into a regular stall, leaving my chair in
the middle of the aisle. It strikes me as a small luxury – standing. My
backside feels heavy in this stiff chair with my 25 pound luggage living on my
lap. Standing gives not only my butt a break, but also my shoulders, hips and
back. My left hand is red and raw from the awkward grip on the chair wheel and pressure
to keep me on course. I didn’t realize how uncomfortable the other parts of me
where, being confined to this chair for the past 3.5 hours. My thoughts quickly
go to my cousin and so many others who live their lives in wheelchairs. They
can’t just choose to stand. They can’t decide life is too inconvenient or
uncomfortable in their chair. They aren’t allowed to get tired of it.
This week I met a new coworker and over dinner she heard the
story of my pregnancies, David’s deployments and all the challenges we faced
during those years. She marveled at what we had been through and said “I will
never again complain about raising my 20 month old, while we both enjoy our
health and my husband comes home every night.” It was a sweet comment, but the
truth is, she will. Just like I swore to never take for granted my husband’s
presence after years of being apart. And yet, I do. My normal now, like so many
others, is normal. Everything seems stable – jobs, kids, family, friends. Yet,
just 4 hours in this chair makes me think about the great health I have been
given and simple freedoms I enjoy. To stand. To walk. To function in a space
that is so obviously designed for those of us that take for granted our health,
while those that struggle have reminders everywhere they go that this world was
not made to accommodate them. I can’t help but wonder if I had been born with a
disability, would I ever truly feel normal? Could I ever fully accept and
embrace my difficulties, while the majority of people pass me by with a pitiful
glance?
