| Draft:
Chapter 4 of my book:
Image
By Christal Hopkins
When you are disabled, it is more then likely that you will live in some
form of isolation. This
isolation comes in many different ways, and others may not see its effect.
Those of us who are disabled know that there is a stigma attached
to being disabled that people outside of our community seldom see, and if
they do see it, they are usually not willing to acknowledge it.
As a young girl growing up, I was somewhat aware of the struggles that
African-Americans had to overcome to achieve equality, but it was not
until I became an adult that my knowledge of my people and their fight to
be heard became apart of my everyday life.
It was during the eighties that my true education began.
When I started attending college, I took classes in
African-American history. As
I began to read and educate myself about where I came from, I realized
that there was a shared path that African-Americans and people with
disabilities traveled. However,
the discovery of my dual paths came with some anger as I realized that
there was shame and miss-education among the African-American community
about people with disabilities.
I discovered that
civil rights for the disabled are generally given a low priority, if it is
given any consideration at all in the Africa-American community.
The neglect of civil rights leaders to include people with
disabilities in the 1964 Civil Rights Act, and later when it was extended
to include women and other minorities, that people with disabilities were
left out, is a question that needs to be addressed.
Disabilities as they are seen through my eyes are not things that I can
ignore. It affects every part of my life. However, I do not want to be judged solely on the fact that I
have a developmental disability. I
want to be seen as a whole person: a person who is capable of all kinds of
feelings and emotions.
I think there are many myths that non-disabled people have about us.
These myths have a strong hold on our society that needs to be
challenged, and then done away with.
These myths have made a significant diffidence in how people view
those with disabilities, and how people with disabilities view the world
and themselves. The barriers
of ignorance and fear cannot be done away with the stroke of a pen, but it
will take all of us speaking with one voice.
Now we are the only social minority group that does not speak with
one united voice on the issues that affect our lives.
Some of these myths are passed down form one generation to the
next.
For people with disabilities, there seems to be no clear cut way of
proving ourselves to a world that has put us in a box, and is content with
leaving us there. But we are the ones who have to start breaking the myth
cycle. In order for change to
happen, there needs to be a shift in our thinking.
In order for the shift to take place, people with disabilities have
to find our own voice, and learn to empower ourselves.
The fact that you might have a developmental disability does not mean that
you should not stand up for yourself.
It does not mean that we cannot solve our own problems.
It does not mean that we cannot live in our community, or
contribute to our community. When
I think of the word inclusion, I think it means everyone working together
in order to make a better world. The
disabled cannot fight alone. It
takes people working alongside us to make inclusion work.
However, there a great deal of work that has to be done in order
for inclusion to work.
The old way of looking at disabilities needs to change.
There is still the belief that we are helpless and in need of
assistance at every turn. In
some cases this is true; we all can use a helping hand from time to time.
However, for people living with developmental disabilities, it is
usually taken for granted that we need help, or that we do not have the
thinking capacity to live our own lives on our own terms.
The problem with that kind of thinking is that it limits people’s
ability to grow beyond what is expected of them, therefore if a person
living with any kind of developmental disability is not strong enough, or
does not have the knowledge of self-advocacy, then that person’s life
might indeed be limited in ways that not only cost the person, but coast
society as well.
As someone with speech impairment, I know that when I am talking to people
it is sometimes very hard to understand me.
People often make the mistake of equating clear speech with
intelligence. Slurred speech is in no way a sign of the lack of
intelligence. Yet, when I
walk into a room to give a speech on the rights of the disabled, there is
always that look. The look
that says that I should not be there, and surely I am not the main
speaker.
When I answer my phone, there is a few seconds of silence, and then one of
two things will happen. The
person on the other end will ask for me, and depending on if I am
understood or not, the person will either hang up, or they will ask for my
mother.
The image of the disabled is something that is still troubling in many
ways; the world sees us as objects of pity.
Without knowing whom I am or what I am about, I hear people make
the statement, “Oh I feel so sorry for her.”
Now of course they thought I couldn't hear them, never mind the
fact that I might have been standing within earshot.
No, since I was in a wheelchair or have a speech impairment and
might be hard to understand, automatically means that I can’t hear well
either, or they imagine me as being a child, incapable of making
intelligent and rational decisions.
This perspective came
home to me one day on my way back from school when I decided to stop at a
Subway sandwich shop. I can
walk, but I do use a wheelchair because my walking ability is limited. So when I got to the door of the sandwich shop, I knocked on
the door in order to be let in. The
young girl who came to the door seemed reluctant to let me in.
When she did open the door she asked if I wanted to come in.
When I said I did, she then had the nerve to ask me if I had any
money?
The question did not
sit well with me, and I left. Realizing
that I was still hungry, I went back.
This time I got up out of my wheelchair and walked in to explain to
this girl, who looked to be around eighteen years old, that all I wanted
was a sandwich and that of course I had money.
What would be the point of me coming into the shop unless I had the
money to pay for my sandwich? I
told her that my body didn’t work like hers, but my mind worked just
fine.
As a society, we put
too much emphasis on how our bodies work.
Now I can understand not wanting to be sick and wanting good
health, or even wanting to look our best.
But when it’s all said and done, our bodies are going to get old,
if we are lucky. We are going
to get sick, and then we are going to die.
It’s called the cycle of life.
It always amazes me when I’m out with friends or family, people think
that whomever I am with can read my mind and can tell them what I want and
don’t want. I frequently go to Phoenix Arizona to see my brother and
sister, and usually go by bus. Last
year when I went and was about to return home, my brother took me to the
bus station and asked for someone to assist me in boarding the bus. When
the gentleman came to help us, he directed his questions toward my
brother, asking him where I was going and if I needed any help while on
the bus. Before my brother could answer him, I spoke up and told him
where I was going and that I didn’t need any help while on the bus.
When I spoke, his attention turned from my brother to me.
My brother, who had never noticed that people tended to talk to him
instead of me when trying to get information about me, starting asking me
questions about how it felt when that sort of thing happened.
I told him that it’s never a good feeling to be ignored, but it
has happened to me so many times that I generally didn’t pay much
attention to it.
The fact is that people with disabilities can make their own choices.
We can tell you what we need.
All you need to do is ask us.
So many times those who work with or live with a person with a
disability tend to want to make decisions for us, no mater how educated we
may be.
For years I resisted
the idea of getting involved with some of the organizations that promoted
independent living for the disabled. I had lived for a number of years
independent of any such organizations.
I have in recent years changed my mind regarding these
organizations.
I live in California
where we have some of the best laws when it comes to disability rights.
We have programs in place that services people who are
developmentally disabled in order to help us live a more independent and
successful lifestyle. Each
client is assigned a consulter to work with the client in order to set up
a program that is best suited to the client’s needs.
My first consulter was not a good match for me.
He wanted to run my life and treat me like I was a five-year-old
who could not think for myself. I
went along with this treatment for a while.
People would tell me that I didn’t have to put up with that kind
of treatment, and they were right. I
finely fired him.
Afterwards, I didn’t want to have anything to do with those kinds of
organizations that said they helped the disabled.
But I soon realized that it wasn’t the organization that was at
fault, but the person who was supposed to know how to work with the
clients as an equal instead of treating them like a child.
I decided after a few months to try again, and this time I was paired with
the right person. The
consulter that I have now knows how to work with me.
He knows his job is to allow me to make a decision for myself.
He tells me if he feels that I am about to make a mistake and tries
to protect me.
Our self-image is often defined by how others see us.
This is more true for the disabled then it is for the non-disabled.
The fact that most of society sees us as diseased and dirty,
non-sexual beings who should never be held or touched or loved, is a
statement about the society – not about us.
There is nothing worse for me then seeing a disabled person who
exhibits bad or rude behavior.
When I was growing up, I would spend most of my summers with my
grandmother, who would always tell me that “I could catch more flies
with honey then I could with vinegar.”
It was at my grandmother’s knee that I learned the valuable
lessons of good manners, that a thank you or a please will take you a long
way in life. So it really
bugs me in the worst way when I see a disabled person with a bad attitude,
who is rude to everyone he or she comes into contact.
As
my mother began to reinforce what my grandmother had instilled in me by
letting me know that neither her nor my dad was going to always be around. You never know whose hands you’re going to fall into, so it
pays to treat people the way you would want people to treat you.
Those words still ring true for me even today. Whenever I see someone who
is disabled displaying rude or bad behavior toward people who are just
trying to help them, I just want to go up to them and tell them to shape
up, because no one has to help you. They
should be appreciative that someone has offered to help them.
Often our image is
determined by our appearance. It’s
important when we go out in public to show our best to those who will
judge us on the basic of how we look.
I will be the first one to tell you that I don’t always achieve this
goal, but when I’m going out to give a lecture on issues that surround
disabilities and disability rights, it is imperative that I present myself
in the best light possible.
Teasing is a part of
life for anybody who is disabled in any way shape or form. The question is not will you be teased, but rather how you
handle the teasing when it comes up.
The subject of teasing was not really addressed with me until one night we
were at a church meeting in Oakland California.
After church everyone gathered downstairs in the social hall, while
my parents were visiting with friends.
I sat in the back where there were rows of chairs sat up.
While I was sitting there, I noticed a group of kids around my age
standing off to the side pointing and laughing.
I knew right away what was happening, and my reaction was to go
crying to mom and dad.
Once they got me
calmed down, and found out what the trouble was all about, we left the
church without saying a word about what had just happened to me.
The next morning while sitting around the breakfast table, my
father asked me again what had happened.
I told him, and how it made me feel.
That morning Daddy explained that things like that were going to happen to
me for the rest of my life. I
had some choices to make about how I was going to handle this the next
time it came up. He told me
that I could do what I had done the night before, if that’s what I
wanted to do, but he said if that was my choice, then I should know that I
would be crying for the rest of my life.
On the other hand he said that when that happened again I could
just ignore those people, because they weren’t feeding or clothing me,
so what did I care what they did.
One day I went out to lunch with two of my girl friends.
We had decided to go to this upscale restaurant.
The young lady that greeted us was very nice and friendly.
But she also made a common mistake. She made an assumption based on
what she saw, and not facts, because she asked one of my friends if I
would like some crayons.
My girl friends and I thought that it was an odd question; after all we
were there to eat, not take an art class.
Then it dawned of me what was happening. I have a speech impairment
that makes it hard to understand me when I talk.
So she just made the “natural assumption” that mental
retardation was at play. It didn’t matter that she didn’t know me from Adam.
All she knew was what she thought she saw.
She never saw the reality of a college-educated woman who has lived
independently for over twenty years. She never saw a person who has
lectured in the community on issues of disabilities and disability rights.
All she saw is what she has been taught to see when it comes to
people with disabilities.
I equate our situation to the way blacks were viewed in the forties and
fifties. White people in that time frame never thought that blacks
were capable of achievements beyond what they were taught.
How do we change the image of people with disabilities?
Real change can only take place when both sides are willing to work
together. People who are not
disabled need to realize that not all disabilities are the same.
I have cerebral palsy, and yes it is falls in the category of
developmental disabilities. That
does not mean that mental retardation will always accrue.
We are living in the twenty-first century; however, we are still operating
in an eighteenth centenary mentally when it comes to people with
disabilities. People who are
not disabled need not assume anything when they see someone with a
disability, except that they are a human being with hopes, dreams and
feelings just like everyone else.
As for those of us who live in these imperfect bodies, we must keep in
mind that people who have never been exposed to people with disabilities
don’t understand that we are just like them.
Or maybe they do realize it and the thought that being like us is so
frightening to them, that they shun us.
So we must practice patience in dealing with those who don’t
understand who we are. Not that it’s not frustrating to see people who are unable
to understand other people’s plight, but when it comes to people with
disabilities, there seems to be a disconnect between us and them.
Still, we must not give up; we must stay in the fight for social
justice for all.
Copyright 2007 - Christal Hopkins
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