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24 August 2012 @ 08:42 pm
33/100: Books written by people with disabilities  
I love reading books written by people with disabilities and impairments because it offers insight you just can't get anywhere else. It shows the challenges people face, even for the most basic things that we take for granted like holding a spoon, blinking, getting into buildings, and saying your own name when introducing yourself.

Reading these books helps me connect with the people, because the people are who matter. They may have cerebral palsy or brain injury, but they're first and foremost a person with a story. They are a person, a human; they have unique strengths and weaknesses like we all do. Theirs are just a heck of a lot harder in different kinds of ways.

Reading about these personal accounts helps me learn how to better help people with disabilities. I'm going to be a speech-language pathologist within a year (only one more year till I graduate -- yes!!!) and I will work with many of these unique people. I'm an speech-language pathologist intern at a small hospital right now and it's the most amazing experience ever. I can't believe this is my career. I love it so much. How can I get so much joy from going to work and doing a job, and not even getting paid for it (not yet at least)? I'm so happy!

Ok, excuse me for that happy outburst. I had a wonderful day at the internship today. Anyway, underneath the cut, I list and post links to such books I've read and talk about them a little. :)

Where is the Mango Princess? This one is about a family who is thrown violently and quickly into the world of traumatic brain injury. This is a true story about a woman whose husband was hit in the head by a boat. He nearly died. He lived, but the troubles (if there weren't enough already) were only just started as he began to heal and recover.

He was essentially a different man after the accident. His mood changed, and he couldn't handle cognitive tasks anymore... like holding a job, going grocery shopping, being the role of husband and father. All that changed.

It's not a tragic read, despite everything. It's very entertaining and informative, and the story is told in a way that puts you in the wife's shoes. After reading this, I basically started to revile the private healthcare system of the United States.

Making Rounds with Oscar. This one is about a cat in a hospice/pallative/end of life care facility, and this cat that was there. It went to sit by people who were going to die soon.

The story is about the doctor serving that facility and how the cat and the experiences with the patients and the family helped him to have more of a heart. He went from being a cold and uncaring doctor only paying attention to the person as a "case," to really caring for the "human" in the patient.

This cat was real, by the way. There are a few tales of these mysterious cats and other animals who sense death.

The Diving Bell and the Butterfly. This was such a beautiful book to read. It is an autobiography written by a man with locked-in syndrome he got from a brainstem stroke. He could only blink and move his eyes. He wrote it by working with a communication partner -- he either looked an alphabet board like this, or doing this more verbal procedure that uses questions and eye blinks. Either way, it takes a very, very long time to construct a message this way. Spelling it out letter by letter with your eyes and a partner takes so long.

That being said, the book is understandably short. But oh, is it ever so beautiful. The man who wrote is was an editor for Elle magazine in France. It was beautiful to read in English, and I can't even imagine how lovely it is in the original French. Some lines in it just captured me.

He spoke of the hospital, his family, his challenges, and his future in such a poetic way. He said he deliberated every word in his head before going through the immense effort to communicate it and spell it out. He died days after it was published, I believe.

Out of My Mind. This is a book about an 11 year old with cerebral palsy. She has no speech and no controllable motor movement. However, her mind is sharp as a tack. I'm not sure if this book is fiction or non-fiction, but it's still pretty darn realistic from my experience with these kids.

I like this book because it tells the account of a child. She's like any other child, but with the motor and speech impairments. She ends up getting a computer communication device called a Medi-Talk, and it opens up her world. She could finally speak all the words she had previously kept inside!

She even goes on to compete in the school trivia club, but unfortunately she meets discrimination from others. Like, they accuse her of cheating because she uses a computer to talk, and they think she gets the answers off it. It's super sad, but she's so strong and keeps going on like only a kid can.

God Isn't Finished With Me Yet. Despite the title, the book had nothing to do with religion except for the two or three pages where she died, went to heaven, and came back.

This is about a woman who was in a car crash when she was 20 or so. Her skull was cracked open and parts were missing. Like a shattered window. She healed, amazingly, and had some resources that gave her an advantage (she came from a very rich family and they paid for so much therapy). She had no language at all (a disorder called "aphasia") to speaking and functioning again.

It's a true story and the author herself came to speak to my class last semester. I can't believe she went from no language at all to giving presentations and speeches. It was really interesting to hear her talk. She confused her pronouns, her sentence structure was out of order, and she only used present tense verbs.

Interesting story. But the writing was done by a amateur writer and it really, really shows. It is so dry, like the bare bones of what happened to the woman. I had to push myself to finish it; it was a dreadful read. The author kept using the word "oscillated" and didn't consider the audience at all. There was no artistic use of language at all, and all the dialogue was fake and too perfect. Very interesting story, but no fun at all to read.

Story of My Life by Helen Keller. It's available to read for free out there on the web somewhere. It's famous and is about the girl who became blind and deaf at a very young age. She hadn't even learned any speech or language, and then boom -- blind and deaf.

It's amazing to read the ever famous moment that she realized "words" and "language" exist -- that people consistently refer to something (the wet stuff you drink and comes out of a faucet) with a name/symbol/gesture/sign/word/letter (water).

One line that really got to me was how she said she became less of an animal and more of a human. Before that point, she had major behavioral issues -- crying, screaming, hitting, biting, everything. Why? No other way to communicate! She was basically a creature of instinct and needs.

But then she learned language, and even (through great, great effort) learned to read, speak, and go to college. She even learned other languages than English. It was interesting to read how the university made accommodations for her. Then it gets really boring near the end when she waxes on and on and on about her favorite books. Kind of what I'm doing right now, hahaha! X)

These next two books are on my "to-read" list:

Finding Kansas, written by a young man with Asperger's syndrome. Really looking forward to this one.

The King's Speech: How One Man Saved the British Monarchy, which was made famous by the movie. It's about a king who stuttered.
Tinietinie on August 25th, 2012 09:08 am (UTC)
What an interesting review of the books - thanks for the ideas.
Mellow Marshmallowmelluransa on August 25th, 2012 02:26 pm (UTC)
You're welcome! I hope you find them and the ideas as interesting as I do.
KSena: Books Beautiful by faiithful@seastarcovekseenaa on August 25th, 2012 09:57 am (UTC)
I haven't read the books you have listed, but I have read books written by swedish people with disabilities off various kinds. Especially Aspergers, since I have a friend with it. :-) VERY interesting indeed!
Mellow Marshmallowmelluransa on August 25th, 2012 02:28 pm (UTC)
That sounds like those are awesome reads! It is just so interesting to read about their lives. :-)
zeph317tohozeph317toho on August 25th, 2012 09:51 pm (UTC)
Wow, these books sound so emotional and so poignant. The story of Helen Keller always inspires me.

I know I've said it before, but I think you are just amazing to want to spend your life helping people. Your passion for your job will come shining through to them. ♥
Mellow Marshmallow: bill charming fanparty smilemelluransa on August 25th, 2012 10:08 pm (UTC)
Love them! They are all very inspiring, but hers especially so.

Aww, thank you Zephy! So many awesome people I work with now who all have that passion. &hearts It makes a big difference and I can't imagine doing this without that compassion.
beerebutterflybeerebutterfly on August 29th, 2012 11:29 am (UTC)
The first two sound really interesting. I hope to be able to check them out soon, especially the cat one. That's intriguing on so many levels. The first one, however interesting, might just make me want to move. I already revile this system. The more and more I think about it, the more I just can't understand how privatized healthcare can strike anyone as a good idea.

Oooh I've been interested in The King's Speech for a while, but I never got to see the movie.

Thank you for sharing this :). I feel inspired already!

Also, congratulations on your dream internship. It's awesome that you're so compassionate.
Mellow Marshmallowmelluransa on September 1st, 2012 01:09 am (UTC)
I recommend the cat one! As a person who does not like cats at all, I loved the cat book!
Let's move to Canada, ok? *sticks tongue out at the American healthcare system*

I haven't gotten the change to see or read the King's Speech, and I really should! Considering my major and my speech therapy stuff.

Whoo hoo inspiration! And my internship is really inspiring too. I worked there today and I'm so excited that it's going to be my job someday.
beerebutterflybeerebutterfly on September 1st, 2012 09:16 am (UTC)
I adore cats! Well, I love all animals. Cats are just another fuzzy friend. Even though they don't seem to warm up to me that easily :'(.

And moving to Canada would be great right about now.