A
lot of people wonder what it is like to have a disability day to day. The truth
is that it is fun and rewarding and stressful and challenging and ordinary and
extraordinary all at once- which sounds very much like a description of
life—with or without a disability. For every eye- opening, "no way,”
“write a memoir” moment, I probably have five others that are painfully boring
and feature me eating pizza or trying to figure out how I didn't notice that I
was sitting on my workplace bathroom key for five hours. However, although my
life with cerebral palsy includes so many of the humdrum daily encounters as
any other life, I will be honest and say there are moments when it is very
clear that my disability makes me “different.”
If there is one thing I could say to summarize
what makes my life unique from that of the average 22-year-old it would be
“damn, this ‘existence’ gig takes a lot of
planning.” In addition to using a power wheelchair, I also have a team of eight
personal care assistants who I must rely on to help me with activities of daily
living that most people do without thinking. Those are all the tasks like
bathing, dressing, going to the bathroom, getting out of bed…basically, if it's
a task you thought was reserved for sacred solitude, I probably have company to
accomplish it. When someone who you may have interviewed and hired just days
before has to put you on the toilet, you develop a talent for awkward ice
breaker conversations that would make your college orientation leader look like
a total rookie.
But
planning your daily activities, the basic things necessary to survive, is no
small feat. The word spontaneous may
as well belong in another language, because every aspect of living with a
severe physical disability is anything but spontaneous. Spontaneity is like
that distant relative you have seen in the photo albums and heard a few weird
stories about, but never actually met. You know he exists and that others have
met him. But when you have a disability, he is just an idea, so you smile, and
say that he sounds like a lovely guy… then; go back to figuring out what time
someone can help you bathe next Friday. If that cute café you wanted to try can
accommodate a wheelchair. If you can get a ride to work, to school, or to a
friend’s house. Normally, the only spontaneous thing you expect is the
spontaneous combustion of your ancient paratransit bus. I am used to some
serious planning. Long ago, I accepted that spontaneity and I, for the most
part, would be strangers.
Most
days, I am OK with that. But on many other days, spontaneity is someone I would
like to meet. At a time of life when most of my peers can make spur of the
moment plans, almost everything I do has to be decided on and set up a few days
in advance. There are buses to schedule.
There are personal assistants to arrange. Often, I must ask assistant A
if she minds coming later than usual so I can go out to dinner but still be
home before my shift with Assistant B or the dreaded full bladder. I have to be conscious of what I order. The
second Coca Cola is not the carefree refill it would be in someone else’s life.
More fluid equals more pee, and even peeing is scheduled, so I can make sure I
will not be squirming uncomfortably somewhere without anyone to bring me to the
bathroom.
This
is not to make you feel sorry for me or to make you think that my life is
terrible. My life is good and happy, but every now and again, I feel a strange
longing for a spontaneity I have never had the chance to experience. I think of
what a thrill it would be to decide to go to a movie ten minutes before it
starts. How weird and wonderful it would be to hop in the car to pay a surprise
visit to a friend. To stay up all night because I could and not have to worry
about what time someone was coming by to put me in my bed. To not have a
schedule so delicately intertwined with those of the people who button the
jeans, comb the hair, and take over where my gently used limbs fail me.
There
can be something beautiful about the way my fate helps me understand
interdependence. The way it helps me to know what it means to need someone and to
be needed. The deep, sometimes too-real knowledge of what happens when someone
you depend on lets you down. But for all the things it teaches me, it can also
be so frustrating.
Most
of my peers make all their plans at the last minute. Not too many twenty two
year olds want to think about the logistics of a lunch date that will happen
next week. Not too many of them are anxious to jump online and investigate
which restaurants in the area are wheelchair accessible. To many of them I
represent extra time, extra hassle, and extra considerations at a time of life
when convenience is most enticing. If the average Joe has a choice between spur
of the moment plans and an easy ride in his buddy’s new car or waiting for a
crappy accessible bus with me, chances are I will not be his first pick. There
are no words for how isolating that feels because the unspoken thought behind
it is “it’s so much work to be your friend.”
Sometimes
I feel sandwiched between two generations. Young and in my prime, checking my
Facebook and listening to all the new music. Planning for my first job and
thinking that however far into the future they are, I am already in love with
my children. At the same time, in this sandwich, I feel very old. I have to
think about who will take care of me and hope that my needs will not be a
burden to anyone. I look at elderly people and I feel like in some ways, I
belong with them, because I know what it is like to depend on others when the
body no longer moves as it once did. I laugh to think that most people’s
greatest fear about getting old is losing the ability to walk. I am not afraid
when I think of old age, because in many ways, my body is already there.
When
I watch other twenty somethings hop into their cars without a second thought,
go to the bathroom in two minutes, and change their clothes whenever they feel
like it, I wonder if they consider the freedom they have. I’m certain that most
of them don’t. They are young and spontaneous. They have the luxury to think about
only the next moment. They don’t understand what it is like to live in this
“sandwich.” They are young. They don’t understand and I cannot fault them. They
don’t understand, but sometimes I wish they did.
