Monday, August 25, 2014

"Life with Cerebral Palsy" with Stephanie Cox: Introduction

In 2014, author Stephanie G Cox's book, “Gentle Firmness,” was published by Winters Publishing Group. Her book highlights how Christian parenting sets firm boundaries and gently helps children learn to cooperate. 

Nothing too remarkable about a book on parenting in 2014, right? Except that this 500 page book was researched and typed without the use of hands…or a voice to text program…

You see, Stephanie G. Cox experienced a long period of oxygen deprivation during her birth which resulted in damage to her brain. This short period in her life resulted in a life-long condition called, “Cerebral Palsy.” 

As with anything…symptoms of this condition can be very different in every individual…

- It can be mild or severe
- it can involve only one side of the body or both sides, or may be more pronounced in either the arms or the legs.
- It can reduce the brains ability to process information (as in make the person less intelligent)
- It can cause tremors, abnormal movements, loss of coordination but allow a person to still walk or, like Stephanie, the person can be left unable to walk at all.
- It can cause pain, seizures, hearing or vision problems, or trouble with speech.

Stephanie has more severe symptoms of cerebral palsy. She lives life in a wheelchair and has her own language which she affectionately refers to as, “Steph Speak," that is most easily understood by those who know her. But, though she is not able to speak quickly or clearly, she hears herself in her mind just fine, as her mind is “sharp as a tack!” 
Cerebral palsy did not affect her intelligence and the Master's Degree hanging on her wall is a testimony to that fact. 

Stephanie is unlike most people in the way her body functions, but, is exactly like “you and me” in the way she thinks about her body.

How many of us spend life thinking, “Wow! I sure do type a lot because my fingers are well-coordinated!” 

Or, how many of us spend time thinking at the end of each day...“I sure do get a lot of work done around the house every day because my legs enable me to walk without assistance!”

Or, how often have you walked into a store and thought, “I sure did pass through that door easily body was able to coordinate walking, talking, texting, and opening a door all at the same time!”

No. We live our lives and do the things we do and whatever we do it’s normal.

Likewise, Stephanie doesn’t filter everything she does and doesn’t do through her physical abilities. She just lives her life the way you and I do…but also not like you and I do.

Just like I don’t sit around thinking about how my life would be different if...I had the physical abilities of an Olympic gymnast, she doesn’t live her daily life thinking of herself as “disabled.”

When Steph first published her book, it didn’t even really occur to her that the fact that she had to type her book with her nose was even that interesting. To her, it’s just the way she types. 

Due to her “Steph Speak” way of speaking, programs like Dragon (speech to text) won’t work for her. And, her fingers have a mind of their own so the only part of her that cooperates to type what she wants to say is her nose.

To a person used to typing with their fingers, this is a feat as amazing as watching the physical abilities of an Olympic gymnast in many respects! But, to Steph, it just is how she types.

Recently, a local news station did a segment about Steph and her book and she was surprised by how many many comments she got from the public who imagined that surely she must just type with her nose just for the challenge. Because her physical body is the same as anyone’s in that it is "just her body"…she’s surprised at how people have reacted to her physical condition and how little people really seem to know about what cerebral palsy is.

And, so, she and I will be working together over the next year to help the public learn more about what life is like for a person with severe cerebral palsy. I will be doing a series of 12 interviews with her, to be published here monthly, in which we will cover one topic or aspect of life with cerebral palsy from her viewpoint.

We hope that you will find this interesting (and a little entertaining!) and that this will help you all understand her better, and also to understand what life as a “disabled” person is like in general.

Thanks for reading!

Creative Commons License
Life With Cerebral Palsy by Dara Stoltzfus is licensed under a Creative Commons Attribution 4.0 International License.

1 comment:

  1. Thanks for helping us better understand CP. It is good to see how God is using you Steph.

    Phil Davis


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