Living with low vision Advocacy Story

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At a recent low vision group meeting I attended a woman came and spoke with us about self advocacy. What made her talk so interesting and unique is that
instead of providing specific tips or talking legalese she told her story. As she talked it occurred to me that we all have an advocacy story of our own
to tell. Here’s mine.

I learned how to advocate from my parents. When they were told that I would be taught Braille because I am blind my Mom and Dad insisted that it was
important for me to learn how to read print first. Because of their persistence I am able to read large print today. That was the right choice at the
time however, I will say this, if my parents had encouraged me I might have decided to try reading Braille at an earlier age.

I wish I could say that as I grew into a teenager I was less stubborn and more thoughtful regarding my needs and wants. But sometimes what we want isn’t
what we need. When I turned 13 my mobility instructor decided it was time for me to acquire my first cane. I hated it. I didn’t want my friends to see
me using it and I didn’t think my vision was bad enough to need it. Of course this meant I began advocating to the detriment of myself. My instructor realizing
this knew there was only one solution. Let me learn the hard way. So she scheduled a night lesson and told me I could decide whether or not to bring
my cane. Of course I chose not to. The lesson did not go well and my instructor was impatient and angry. But it was because of that night I was able
to grudgingly accept using that cane for travel after dark.

When I graduated from High School I really wanted to attend college and become a teacher or journalist. The state of PA had other ideas. They wanted
to fit me into their little mold which at that time meant I’d either work in a sheltered workshop or I’d be sent away to become a vending stand operator.
Those were the only options I was given. Not being satisfied and expressing my displeasure I began my own crusade to find work. Because I didn’t let
those in charge of the money tell me how they wanted me to live my life I was able to work in a variety of jobs within the disability community. Most
of these jobs involved me teaching or writing in some form or other. I was even fortunate enough to provide peer support to some individuals along the
way.

When most people hear the word advocacy they probably think about demonstrating or trying to be heard above everyone else. Self advocacy isn’t always
that way. Sometimes it’s assessing the situation you find yourself in, learning all you can about your various options, then making a decision and sticking
to it as I did regarding employment.

Now I face my greatest challenge yet. Since I have a hidden disability it is more important than ever that I self advocate. People don’t understand my
sensory over load issues and attempting to explain them is sometimes interesting. For instance when I tell someone that the fire siren or vacuum cleaner
is too loud they always want to point out that I must have more sensitive hearing because I am blind and that they understand it must be louder for me
then for them. What they don’t realize is that it isn’t the volume, tone, or pitch of the sound it is how my brain is processing it. It is the same with
my other senses. I’m learning to speak up in a new way. I have to alert people when I need to change my environment to accommodate my needs.

When I’m faced with a major life decision I do a lot of research to determine all of my options. Then make a pro and con list to help decide which option
is best. I stick to my decision. Family and friends mean well but I am the one who has to live with the results of my choices. I speak up if I need
help. I don’t assume those around me will know what my needs are.

I hope sharing my story and strategies will inspire you to advocate for something you may need or want in your life.
by Guest
Donna Williams.