Inside My Outside: An Independent Mind in a Dependent Body

by Sara Pyszka

Upon meeting Sara Pyszka, most people think they know what it's like to be her, regardless of what they actually know about her.

They see her wheelchair. They see the computer attached to her chair. They may or may not see the bands that hold her arms down, or the buttons on either side of her head rest. They see, and probably speak with, whichever personal assistant is accompanying her that day. They see her, yes, but this doesn’t mean they know anything about her.


Few people can accurately imagine what it’s like to be completely nonverbal, to be unable to walk or use their hands. They don’t actually know what it’s like to rely on strangers to get them out of bed and ready for the day, to feed them, to bathe them.


Inside My Outside: An Independent Mind in a Dependent Body provides an in-depth look into the life of a young woman with cerebral palsy who cannot walk or talk but who uses an electronic device for communication. This memoir covers three full days, from morning to night, in Sara Pyszka’s life, providing glimpses of past relationships, friendships, schooling, and outrageous stories about the challenges of hiring, firing, and working with personal care assistants. Sara even takes it a step further by providing the occasional comparison between her life and what she imagines life would be like if she did not have a disability.

Genres: Disability

358 pages, Kindle Edition

Published March 9, 2020

About the author

Sara Pyszka launched her writing career with the 2013 release of DANCING DAISIES, her debut young adult novel. She published its sequel, SWITCH THE SONG, in 2017. INSIDE MY OUTSIDE is her first non-fiction work. It chronicles her experiences as an individual with cerebral palsy who gets around using a wheelchair, cannot use her hands and relies on an electronic device for communication.

Through her writing, Sara hopes to change perceptions about people with disabilities in a positive way.

An accomplished public speaker and lyricist, Sara lives in Pittsburgh, Pennsylvania.

Reviews

[Pru · Rating 5 out of 5]

Sara Pyszka can't talk, can't walk and can't use her hands but she sure can write an eye opening book! As a young woman with  Cerebral Palsy due to complications at birth, we can only imagine how challenging her life is but this memior gives us a glimpse into her life along with the good, the bad and the oh so frustrating. Pyszka does not hold back either! She covers topics from toilet trips to sex all with grace and humour.

I wasn't sure about this book going into it but I am so glad I read it. The determination of Sara is heart warming but her challenges made me angry especially when most of them are to do with her care assistants and how little they actually seem to care. The various emotions felt throughout this book were intense! Definitely an emotional roller-coaster that I would encourage everyone to experience.

[Katie Knight · Rating 5 out of 5]

I really enjoyed reading this book! I have met Sara a couple times myself- once in college when I was studying to be a Speech Language Pathologist and once recently at an ASHA convention. I wish so had gotten to spend more time talking to her during both of those times. I think we would have had awesome conversations. We both love reading and we both enjoy “Switched at Birth”. There were other similarities as well.
Thank you for writing this! It helps me better understand you, the kids I work with as a SLP in an elementary school, and their families. I want to read your other books, too. Just one question- would you ever consider writing a book for kids or do you just want to write for teens/adults? The decision is of course is up to you.

[Chelsie Hermsen · Rating 5 out of 5]

Fantastic Book! As someone with CP and speech impairment, I could relate to so much of this book. Especially the parts about dealing with PCAs. I know the feeling of knowing you need to address an issue but not quite sure how to. Everyone dealing with PCAs should read this book.

[Thomas · Rating 5 out of 5]

A very open and insightful look into Sara's life. The more I read, the more I felt more of what it might be like to be in her shoes. Obviously everyone's life experiences are different, but I think every able-bodied person should read this to better relate to people in the disabled community. My thanks to you, Sara, for the gift that this is and that you are.

[Tim Jin · Rating 5 out of 5]

There is no point for me to write my memoir anymore because Sara Pyszka pretty much sums up my life on what it is like to have Cerebral Palsy, an AAC user, and handling so many staff to assist me to maintain my livelihood. Her memoir is outstanding, outstanding and even more outstanding. “Inside My Outside” is my favorite book that I’ve read all year.

I can relate 90% of what Ms. Pyszka wrote in her book. It is a carbon copy of what it is like to be disable and observing everyone and waiting to be heard. This book is so important. I urge everyone working with people with disabilities to read it.

Thank you Sara Pyszka for your honesty. Your words are delightful to listen to and eye opening for many that doesn’t understand our inner circle.

[Charlotte · Rating 2 out of 5]

Sara’s description of her self identity, her experience with caregivers and her frustration with her body are SO IMPORTANT. As a parent of a child who has CP, is an AAC user and needs full care hearing an adult’s perspective is invaluable. I was really hoping to be able to recommend this to friends and family so they too can read a first hand experience of some of the things priori who need caregiving experience. Unfortunately I can’t do that with this book. Sara received a power chair, an AAC device and so much more before or right as the ADA was passing. She was mainstreamed in the 90’s. That is a unique and EXTREMELY privileged experience. In 2022 most schools try and hide Disabled kids in segregated classrooms and don’t fully educate them. My daughter was denied an AAC until 6 and that is the NORM. Insurance says kids can’t understand how to use AAC until they are 6+, essentially denying them a voice. If the child is intellectually disabled (or judged as intellectually disabled bc they are denied expressive communication) they may never have access to an AAC or power wheelchair. She talks about the ability to purchase TWO shower chairs as an adult, again thst means she has enough money (or access to enough money) to pay out of pocket and since SSI has a cap of having $2000 at a time she likely isn’t relying on SSI or Medicaid like the majority of Disabled people in the US. I’d be less critical of these things because she’s talking about HER experience if she didn’t also add in an entire racist rant. She has an entire ran to talking about how she has a white cis straight. Disabled person is the most marginalized person. She completely ignores that black, disabled people exist, indigenous disabled people exist, that queer disabled people exist that black, queer trans disabled people exist and every single possible mixture of marginalized identities exist within disability. She dehumanizes and deletes all other marginalized disabled people from existence. You never ever ever have to compare race queerness or transness to disability not only doesn’t make no sense because those identities 100% can overlapping often do but also you are devaluing the oppression, genocide and murder of the other communities as well as your own disabled common. Black disabled people were murdered by there enslavers in this country. Non-white disabled people are still more likely to be murdered by caregivers then white disabled people. Oppression of multiple groups can happen the same time and there’s not a hierarchy especially because Intersectionality exists. The entire part where she rages about how she’s so open, but then the entire point is to put her white cis straight identity, above all other people who experience multiple identities of oppression while being disabled.
And then, of course, there is the lateral ableism. Her decision that she is the most oppressed, and she is the only one that’s experiencing the level of oppression as she actively uses ablest language that is designed to actively harm intellectually disabled people while she sits at her own home with her caregivers and enough access to money to have those things. Many intellectually disabled people are in conservatorships and guardianships means they have no autonomy over their body and they are locked up in group homes and institutions. They also require full care because they were never value enough to be taught how to care for themselves. They don’t get to pick their food. They don’t get to pick how they spend the day or what they wear and they are subject to subminimum wage so the facility they live that is getting paid from the government two different ways as well as contracts for the companies that they do work for while the person who is doing the work is getting paid a cents to a dollar on the hour while many of these jobs actually would pay 20+ dollars an hour with benefits and a disabled person is doing the same job just as well as the non-disabled person.
If the goal is for you to tell your own story, tell your own story don’t be literally ableist and don’t harm other communities. If the goal is to educate on disability, educate yourself first, acknowledge your privilege and don’t overstep because that’s how you cause harm which is something she has done in this book which is why I cannot recommend it.

[Audrey · Rating 5 out of 5]

I usually never expect my assigned reading for classes to be this enjoyable. Sara is actually just an older version of myself, so much so that half of my annotations for this book are just "same" and "relatable"! I read this book for a class I am taking about AAC, and this book was truly an eye-opener about the individual experience of using AAC, as well as the life of someone who uses PCAs. I laughed out loud, audibly gasped and dramatically slammed my book shut, and even shed a tear while reading this book. Sara's writing felt like a personal conversation with my soul. I'd recommend this for anyone going into any service-field, but especially to fellow SLPs-in-training/SLPs.

[Tania · Rating 2 out of 5]

It was such a struggle to get through the book. Though I’m thankful for some perspective on being differently abled, I think this memoir failed to really give the readers a chance to endear themselves to the writer. I just couldn’t seem to get past some of the authors complaints, especially when it came to her interactions with her assistants, which is the majority of the book. Not a book that I would recommend.

[Callie Blacklock · Rating 5 out of 5]

i read this for my special problems in language class, and i thoroughly enjoyed it! great read!!