Dismantling the Disability

My Uphill Battle with Friedreich's Ataxia

Erin K Pieper

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Paperback

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English

Smokeblood LLC
22 February 2022

Memoirs; Hereditary diseases & disorders; Coping with illness; Family & relationships; Advice on parenting

A desire to belong in a world that poses challenge after challenge has driven Erin K. Pieper to have to be more patient than she ever thought would be necessary. To have to be understanding, and to not only accept but integrate physical limitations as part of her everyday life.

Twelve years after her initial diagnosis of a rare and little-known disease called Friedreich's Ataxia, Erin shares her struggles in navigating the world not only with this degenerative disease, but also while being a single mother.

Erin shares her life story while unveiling her vulnerable and kind heart. She shares the raw and honest truth of her struggles while systematically informing us all on such a rare disease, giving voice to the voiceless.

While she educates, she emotes. She advocates. Her memoir evokes such empathy for the disabled community as well as single, struggling mothers everywhere.

You'll laugh. You'll cry. And you'll surely open your mind to new and creative possibilities for how the world could be, if we made it more accessible to the least able-bodied among us.

By: Erin K Pieper
Imprint: Smokeblood LLC
Dimensions: Height: 203mm, Width: 127mm, Spine: 12mm
Weight: 222g
ISBN: 9798985123425
Pages: 220
Publication Date: 22 February 2022
Audience: General/trade , ELT Advanced
Format: Paperback
Publisher's Status: Active

Erin Pieper is a single mom who advocates for finding a treatment for Friedreich's Ataxia (FA), a rare disease she is faced with. She volunteers as an Ambassador for FARA (Friedreich's Ataxia Research Alliance) on their blogging team. She writes about individuals who are introducing themselves to the FA community, as well as on different fundraising events and their outcomes. Erin has participated in many fundraising events, near and far, and has taken part in more than five research drug trials at the University of South Florida, in hopes of finding a treatment for FA. She is the designer of FAn, a t-shirt campaign that advocates that the purchaser and /or wearer is a fan of spreading awareness and support for those diagnosed with FA. Get yours to show support here: https: //www.bonfire.com/store/fan/She spends a lot of her time overcoming the struggles of FA, in order to be as involved of a mom as possible, and make the world a kinder place. Erin would love for you to comment about this book on your favorite social media platform, connect via call or text, or come on over to her place for a chat!Visit her blog: www.mywobblyworld.com(Or at least be friends on the socials so we can stalk each other.)Facebook: Erin PieperInstagram: @peepr

Reviews for Dismantling the Disability: My Uphill Battle with Friedreich's Ataxia

"""What a beautiful book. I was fully immersed within the first few pages. Erin's story is educational, witty, and poignant. She invites the reader into her life, sharing the trials, burdens, and beauty of it all. Erin has a gift with words, and I thank her for sharing them with the world. I highly recommend it!""-Lisa M Brennan, author of The Auditorium in My Mind: Treasuring My Transgender Child ""This book is a beautiful and moving read! So graciously written, yet honest! Erin delivers a humbling perspective on life that one could benefit from striving to acquire.""-Rachael Cradic ""When living with Friedreich's Ataxia, it can feel like difficulty and darkness surround you-especially when you can no longer do simple things you could previously do. It can seem even darker if you are a parent. Erin's story serves as the light that shines through that darkness. We can't control how FA will affect us, but we can control our reaction to it. From my experience and from what Erin shows, a positive mindset and acceptance is key to navigating a life with Friedreich's Ataxia.""-Beverlee Blackston, diagnosed with FA ""Honest, thoughtful, and hopeful. Dismantling the Disability truly takes a deep dive into living life with a disability. Erin wonderfully and beautifully expresses her opinions and explores her feelings about Friedreich's Ataxia, being a mom, loneliness, togetherness, therapy, dating, participating in research, and so much more.""-Michael Gehr, diagnosed with FA ""Mothering is hard. Single mothering is even harder. Tack on a progressively degenerative disease crippling every aspect of your body's physical faculty, and you've got one hell of a daily grind. Despite inheriting a not-so-golden ticket, Erin Pieper relishes life and gracefully out-maneuvers her challenges with creativity, wit, and undying positivity. Whether you're looking for inspiration, relatability as a mother or are an individual battling your own handicap, Erin's narration of life experiences offers a genuine glimpse into the world of a shero and the caliber of parent and human that I aspire to be.""-Elise Hyman"