Rae reviews the book, Stumble to Rise, in this post.
Stumble to Rise is an autobiographical description of living a full life with multiple sclerosis (MS).
Gina, the author, has a meaningful career, an active family and a stylish home.
She describes both the medical and physical experience of MS (procedures, mobility issues) as well as the way she processes her emotions in understanding what MS means for her life. Through her story, Gina provides encouragement for people living with MS and good tips for allies on how to relate to people with mobility disabilities.
People should know not to make jokes about young people with walkers or to ignore people in wheelchairs, but it’s a good reminder!
Gina is a great example of someone who successfully navigates many challenges of an often inaccessible world, advocates for herself and lives a very fulfilling life.
I’ve discovered that there isn’t just one way to survive and thrive. When the most obvious route becomes impassible, there is another one ready to be traveled. While accepting some support along the way, it becomes our job to find that alternate path.
Through my greatest teacher, disguised as struggle, I’ve reinvented myself and have become a warrior.
I had a really hard time writing this review because I found Gina to be a very appealing person, but I was disappointed by her perspective on disability.
Gina is not comfortable with the label “disability” and uses some outdated/ableist terminology (“confined to a wheelchair”). In addition, she seems eager for her story to “inspire” others.
Inspiration porn, “the portrayal of people with disabilities as inspirational solely or in part on the basis of their disability” [https://en.wikipedia.org/wiki/Inspiration_porn] is a pet peeve for many in the disability community. Yet I am conflicted about this in Gina’s case, because if she, who has made and is making her way through difficult physical and emotional processes that I have not experienced, WANTS to inspire others, is that still inspiration porn? How can I judge her for this?
On the other hand, will the perspective of the book reinforce a reader’s inspiration porn attitudes in other contexts? Will the reader be more prone to objectify the next person they see in a wheelchair and assume they are courageous and brave, like Gina (when they actually have their own personality)?
Much of the book is simply the story of Gina’s life, and not about MS.
Perhaps this is the point—MS is part of her life but she is not singularly defined by it.
Gina shares her personal history, from her happy childhood and loving family through her early 20’s when she married a devoted husband and was advancing professionally, and her journey into parenthood. She is a savvy business woman with a stylish home and clothes and lots of family support. Gina is an appealing person, but obviously, not everyone is going to relate to her life story.
Gina first experienced symptoms of MS in her late 20s and took a long time to accept her diagnosis (initially MS was likely but not confirmed).
When symptoms increased, Gina describes that even while she went through difficult times, emotionally as well as physically, she was able to be joyful and fulfilled.
She changed homes and jobs to accommodate her needs, which at first was difficult for her, but she maintained a productive career and is still stylish. Gina also enjoys actively parenting her son, and his perspective helps her feel empowered.
He calls her wheelchair, which she was hesitant to use, her “possibilities” chair because of the freedom it provides.
While the tone of the book is very positive, Gina does not sugar coat challenges.
She describes her sometimes difficult medical treatments, the physical pain she endures, frustration dealing with insurance and emotional difficulty because the progression of MS symptoms is unpredictable and different for everyone (she calls it a “baffling” disease).
Gina reflects on her reluctant use of mobility devices and a handicapped parking pass (which she comes to embrace because of the independence they facilitate) and the need to carefully plan basic activities such as grocery shopping.
She discusses her medications and things that she would have done differently and highlights accessibility challenges, including times when she would dehydrate herself before going places with difficult bathrooms.
Gina also describes the way coping mechanisms like meditation, humor and journaling help her stay positive (“conscious gratitude”), as well as how exercise, alternative therapies and a gluten-free diet help with pain.
I would have liked her to expand more on her emotional process—she is quite empowered but seemed to struggle to get there, and she doesn’t go into much detail about the process. She identifies three things that help her stay positive (p.158):
- Focus on taking control of what I CAN control while replacing worry with HUMOR.
- Realize that everyone is dealing with challenges. MS just happens to be mine. I lead my life. I don’t let my challenge/my disease lead me.
- Be grateful for the many blessings in my life and celebrate them daily while remembering the simple law of attraction – what I focus on expands.
With the caveat of the sometimes ableist-leaning/inspiration porn tone, I would still recommend this book, especially to people who develop mobility disabilities as adults.
I think Gina’s description of coming to accept MS and thrive could be really valuable for someone going through it.
Rae is learning to be a disability ally by listening to people with disabilities and reading/watching their books, blogs and movies, and by going to as many trainings as she can. She is a mom of three, including a daughter with Down syndrome. Rae is particularly interested in the intersection between disability and international public health, her background. She likes yoga, loves the beach and occasionally dabbles in textile arts.
Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.