“On
the one hand, she was viscerally aware of what polio had done to her body and
of the day-to-day realities of living with a disability. But she was also aware
of what she called “a gentleman’s agreement” at home and at school to pretend
that her disability didn’t exist.”
This is a quote from chapter 1 of
Fred Pelka’s book What We Have Done: An Oral History of the Disability
Rights Movements. This particular quote is a part of the Childhood
chapter, and he’s introducing Corbett O’ Toole. In the pages following this
quote, Corbett O’ Toole’s interview describes a fundamental problem still
relevant in society today--that of identity.
As we progress from childhood into
adulthood, we struggle to find our identity. We strive to no longer be
perceived as so-and-so’s child but rather our independent person. This is no
different, no matter your race, religion, sexual orientation, or gender.
However, when one has a disability, the identity struggle is often
internal.
What is the nature of the internal
that disabled people face? Apart from dealing with all the obstacles that any
teenager or adult deals with, people with disabilities often struggle with what
I like to term the “okay with it” or “not okay with it” question. When I say
that there are two sides to a disability, I’m speaking from personal experience.
No, I am not referring to born with vs. acquiring your disability in later
life. In this case, I am referring to accepting your disability for what it is
or wanting it to be something different. This is a pervasive struggle
throughout the disability community, but not many people with disabilities are
willing to discuss the inner battle that occurs. Sometimes daily, this battle
happens. I present here a little bit of my struggle with the question of
identity.
I know what it is like to have a
disability, but I do not know what it is like to have a child with a
disability. So I cannot imagine what it would be like to raise that child. That
being said, it makes complete sense that the stigma about disability is
arraigned from childhood. If I were not familiar with disability, I would see
it as a “bad” thing. Also, if I had never been exposed to it, as Pelka puts it,
“The idea that disability is a taint, a statement about the inherent worth or
character of the person with the disability, works itself out most painfully on
children with disabilities who absorb, often without knowing, this prevalent
but generally unspoken judgment.” (Page 30). I can say that this is true in my
life, as well. The earliest memory I had was taking a ride with my mother and
maternal grandfather on the way to physical therapy and falling out of the car.
My mom was a therapy drill sergeant when I was a kid, and to her credit, I
thank her for that. It was her belief and mine at the time that therapy would
improve my condition. I believe that the treatment will help me maintain my
condition, but it will not improve it. If it wasn’t for my mother taping my
hands open to the playpen while I was standing, I don’t know if I would have
the sense of humor I do and my ability. Her practices reflected an essential
belief about disability. There is one school of thought, as Pelka puts it that,
that the belief the person with the disability needs to be “cured” and “made
whole.” (Page 8). My mother is easily stressed, but she is one of the sweetest
people I know. She will bend over backward for anybody, but when it comes to
disability, I still believe (like all of us) she has a lot to learn.
It was ingrained in me as a child
that appearance was vital. To some extent, I agree with that philosophy, but on
some levels, I am sure unintentionally, it came off as treating my disability
as if it wasn’t there. All that being said, I am very grateful for my parents
for the support they have given me throughout all of the years—including the
struggle with my identity that I am about to discuss.
When I was fifteen until I was about
twenty, I can safely say that my parents and I didn’t get along at all. Back
then, I thought it was because they didn’t understand me; they didn’t know
anything or some teenage notion like that. I’ve since come to discover that our
fighting was a result of something much more profound. The fight that occurred
between us was a result of me not being comfortable with whom I was. Therefore,
being able to stand up for my own identity. This does not mean I was not pleased
with the sarcastic smiling kid I was—no, the discomfort occurred on a much
deeper level. I was not comfortable with who I was as far as my disability. I
would often get into fights with my mom over therapy, simple tasks like
shaving, or “keeping up my face,” as she termed, trying to control the acne
that would break out. What I was fighting about was the ability to control my
own life. Some of you that might read this will say that this is a typical
fight between a teenage child and a parent, but nothing is typical when the
parent is also your caregiver. Typical goes out of the window. Not only was I
fighting the hormone storm that was raging in my body known as puberty, but I
was also fighting with the two people that I loved the most. Because we had
never been put in a situation like this before. I mean, they had never raised a
child with a disability, and they were only doing what they thought was best.
For my part in those fights, I sincerely apologize. They say hindsight is
20/20. How true that expression holds in this instance.
Apart from the fighting with my
parents—from the time I was twenty to about twenty-two, I had a hard time
dealing with the social stigmas and pressures that came with disability.
Without going into detail, I can suffice to say that I did not handle those
pressures very well. After several years I thought I was all right, and things
were on the upswing. Until fairly recently, when I discovered the underlying
cause for most of my identity problems.
Because I had always believed that I
could do anything despite my disability, whether rightly or wrongly, it would
come back to haunt me. I am not saying that people with disabilities should be
limited but should be aware that though it is unjust and not fair—society puts
limitations on them. Recently, I came into a crisis with my school and what I
had planned for my life. Those around me and those who know me well know that I
am mentally capable of whatever an average person can do. However, if I am not
given specific accommodations physically, I am at the mercy of others. This
holds in the realm of everyday life to pursuing dreams of education and
employment. Although I believed that I could be a productive teacher in the
classroom, I came up against my first real sense of resistance in life. I’ve
always been told by a good friend of mine (who is no longer with us) that I can
do anything if I put my mind to it. Sadly, while in an ideal world, this may be
true, but it is not reality when you have such obvious obstacles to overcome as
I do. Without someone in a position of power supporting people with
disabilities in their chosen aspirations, desire can only take it so far; hence,
why society needs to develop a greater understanding of disability. Once a company
develops that more excellent knowledge, then more allies for the disabled will
emerge. More barriers that we, as a community, face on an everyday basis will
be thrown aside.
Footnotes:
Pelka, F. (2012). What We Have Done: An Oral History of the Disability
Rights Movement.
