1966, the Beatles and “Leave It To Beaver” reign, the Vietnam War and Civil Rights rage, feminism is unheard of, and Linda’s first baby is diagnosed with Down syndrome. Linda refuses to institutionalize him, determined to raise Steve at home. For the two more sons who follow and her husband, Linda tries to fulfill cultural norms as a homemaker, a woman whose voice is seldom heard or valued. But it isn’t her nature to be meek.
Linda struggles to provide Steve an education at a time when disability rights don’t exist. Her advocacy focuses first on integrating him into the community, then, as he grows into adulthood, landing a real job and independent housing. Pioneering what’s now called “inclusion,” Linda follows her heart to help Steve develop his fullest humanity.
Over these same decades, Linda learns to advocate for herself as well, starting with a career in public education. When she unexpectedly falls in love with a woman, her life path takes unforeseen turns. Linda must dig deep to accept her new identity before she’s ready to meet her true soulmate. Throughout, unwavering love for all her sons is her lodestar.
Catherine Porter on Goodreads wrote:
I’ve always admired the true pioneers in the disability community—The parents who disregarded the wisdom of the day that included abandoning their babies at institutions and braved the lonely path of raising their children. Not only is Heart of the Family the memoir of one of those brave mothers, it’s so well-written and chapter after chapter kept me hooked and turning the page.
Starting in the late 60’s and moving to the present-day this is one of the few books that chronicles the full life of a man with Down syndrome from birth to his final days on this earth.
But Linda was not just a pioneer in disability advocacy she was also a trailblazer in the LGTBQ movement.
We all have a book in us—but we all do not have the skill to craft an engaging page-turner! I do not want to ruin the story by telling you what happens in Steve’s amazingly independent life. But I do want you to know, especially if your the parent of someone with a disability—this book will give you the permission for you to also live independently when your child is an adult.
Don’t hesitate to order this book—you will be so glad that you did!
Heart of This Family was authored by a friend of my grandma's, who gifted it to my family because of our connection to someone with Down Syndrome (my mom's sister). I wasn't planning on reading it, but my mom left it next to my bookstand and I picked it up while falling asleep one night. I flew through it in less than 48 hours! I do think I especially enjoyed it comforts me that my grandmother was friends with a woman like this.
This book is well-written and really exemplifies ideas such as community care, disability justice and feminism before those terms became mainstream. Linda didn't have anyone to follow, but to trust her instincts in all aspects of her life -- and things didn't always turn out okay, but perhaps still turned out how they should. Both Linda and Steve (her son, diagnosed with Down Syndrome during an era of institutionalization) have lived such rich lives and grew from such adversity. To me, the book is an example of how punishing the traditional nuclear family is to women, and that everyone needs a network of care and support -- whether Linda or Steve. I especially admired that although Linda was a strong advocate for her son, she recognized when she needed to step back from control and respected his own wishes.
I do recommend this book!