“A genuine, vulnerable memoir sharing valuable insights on the injustices and possibilities of disabled people’s day-to-day lives
Martha Siede has lived with dystonic cerebral palsy since just after she was born—when a lack of oxygen to her brain would result in significant physical and emotional health issues for the rest of her life. In between stories of her personal history, she shares family photos with us as well as handwritten notes from her childhood and loving family.
As a disabled reader, I was delighted, relieved, and lit up with encouragement and connection while reading this story. This memoir conveys a strong, wonderfully supportive “by us for us” vibe, that also serves as a really helpful, personal guide for able-bodied people to see what life looks like from our perspective.
I especially appreciated the way author Siede presents our struggles matter-of-factly —which they are, because of how frequently we encounter them. “The hospital is where you would think disabilities would be comfortable and accepted,” she writes, “but it does not work. It is like trying to fit a square peg in a round hole.” I loved that Martha Siede’s experiences reflected my own frustration with doctors, mirrored accommodations that I use at home, and taught me a bunch of new ways to manage symptoms and strategies. All this by reading Siede’s day-to-day routine! This is one of the best parts of spending time with other disabled people; I appreciated Siede recreating that conversational, community talk that disabled people engage in, kindly sharing many of her symptom management tools.
Describing herself and husband Andrew as being “like ducks,” Martha Siede explains: “We look calm on the surface, but we are paddling hard underneath. I feel that although people are accepting of my disability, they do not know what it takes for me to get ready for the day.” Martha offers her life as evidence that accessing the support you need is never as straight-forward as you’d think: whether that be marrying someone who will put toothpaste on your toothbrush every night so it’s ready for you in the morning or your job application being rejected after you asked if the building has elevators so you can enter and exit comfortably.
The author successfully conveys how different a disabled person’s life can be with the right accommodations—at school, university, when applying for jobs. Throughout each decade of her life, Suede excels under fair, inclusive environments and struggles greatly when left without any support. One of my favorite accommodations explored in this book is that of clothing companies who advertise by using photos in which models are seated, so that wheelchair users can picture how it will look on their bodies.
There’s a fair amount of humor woven into this story, and it’s clear that this comes from the spark of joy and playfulness that is naturally within Martha and her family. For example, chapter eight is titled Marriage is Harder than Getting a Degree. And:
“I told Andrew, ‘I have depression!’
“He said, ‘I know.’
“I asked, ‘Why didn’t you tell me and take me to the doctor?’
“He said, “I thought you knew.’”
I also thoroughly enjoyed the brilliant silliness of Martha’s dad coming to collect her from a health facility for disabled children (which turned out to be more of a home for kids who were abandoned by their families due to their disabilities), where she was sent to heal in her post-surgery double-limb plaster cast. The impromptu rescue meant Martha’s father had to turn her sideways to fit her in through the backseat car door, leaving her facing the window for the ride home.
But there is a lot of sadness in this book too. Most of it comes from the despair Martha feels about her infertility and IVF journey. These chapters (starting just after the halfway mark of the book) feel long and heart wrenching. Perhaps because they follow many chapters of practical solutions, the dark emotional period feels like a different book.
These chapters are followed by many, many pages about the role that her religion has in her life. Martha writes about her relationship with God, her religious reflections on being chronically ill, and her time spent at both church and attending church-related events. These stories are interesting, but they feel separate fro the first half of the book.
Martha Siede asks, and asks her reader to consider: “What does healthy look like?… We are not robots; we cannot all look identical in shape and size. Our bodies are constantly changing, and we need to embrace this.” I felt a sense of calm and relief in my body, which has gained weight and lost strength due to disabilities limiting my movement, when the author went on to say: “I cannot compare myself to people who walk around as my muscles and body fat are distributed differently throughout areas of my body.”
This book successfully conveys that the author is able to live a full and fun life while being a disabled woman. She goes on exciting family adventures, enjoys her healthy, loving marriage, and even visits a skydiving simulation venue where she is suspended in the air by a wind chamber of high-powered air. Martha Siede really brings us along for every experience she shares in this memoir, good or bad, joyous or excruciating.
The author includes content warnings at the start of this book for medical details, suicide, infertility, sexual references, and the topic of female weight. In Pursuit of Normal also discusses Martha and her husband’s struggle with IVF in addition to their infertility. The book also includes the birth of a stillborn baby and a child who regularly turns blue at night from health complications. There are realistic scenes featuring blatant discrimination, medical malpractice, and parental death. There’s a storyline that discusses depression, grief, and the long illnesses and death of pets.
I would recommend this book to disabled people and their caregivers especially. There is so much valuable advice and life lessons to be learned in this book. Author Martha Siede makes a clear, easy to follow distinction between when she is getting the kind of accommodations that make her life more equal, and when she does not. Recounting these hardships never feels like lecture, a reframing of history, or an exploitative tone. Instead, Siede has written something that feels honest, and strikes the complex balance between serious health concerns and conversations where she’s matter-of-fact about some very difficult topics. This tone is very true to my experience of living with depression, trauma, and disability.
The greatest value within this book is its candid exploration of what day-to-day life is like for someone with a disability. Of course, each person’s experience—even with the same diagnosis—is going to be different, but the triumph of Martha Siede’s writing here is that she is telling her full, candid story: her struggles, her inside jokes, her medical experience on the page just as she lived them.
In Pursuit of Normal is not sugar-coated with the sweetness of inspirational stories tailored for abled peoples’ enjoyment, nor is it directed entirely at people who can relate to her specific struggle. This is a book that highlights so many of the hurdles and setbacks that disabled people of all illnesses, ages, and levels of ability face. Reading this book felt like visiting a safe and comfortable place where we can joke and complain and laugh and listen to each other, basking in the knowledge that this is someone who really gets it.
In addition, In Pursuit of Normal is an excellent resource for their friends, families, and anyone who loves or works with disabled people and wants to offer as much compassion and practical help as they can. The author covers not only physical disability but also mental health, and both are described with a level of candor and a sense of straight-forward focus on building hope that mirrors my conversations with fellow disabled and depressed friends. The author threads this encouraging hope throughout the story, honoring those who ask for, and those who provide, the accommodations for any disability they require.”