Denise Lance’s parents were told that their daughter would never walk, never talk, never write her name. She did all of those and more! This is Denise’s funny, tearful, true account of living a typical life through unconventional means.
Memoirs Disability rights
||Kansas City, Missouri
||5 publishers interested
Denise Lance’s parents were told that their daughter would never walk, never talk, never write her name. Calvin and Jean Lance never believed their bright-eyed little girl had severe cognitive disabilities, though her physical and speech impairments from cerebral palsy were obvious. They enabled Denise to live a typical, happy childhood, learning and playing alongside her peers without disabilities.
Not only did Denise walk, she danced in the school talent show. Not only did she talk, she spoke to her entire elementary school and was elected to student council. Not only did she write her name, she wrote a column in the high school paper.
She graduated from high school and finished two grueling years of college by hammering typewriter keys with a stick. Her world expanded to new heights when she got a computer. Thoughts passed from her mind, down to her big toes, to the computer keyboard, and onto the computer screen. Her intellect no longer limited by the confines of physical limitations. Technology empowered her and became the impetus for her career ensuring that others with disabilities live the best lives possible.
This is a story of unprecedented parental devotion, creativity, and gut-following. It is a story of dedicated teachers and genuine friends who looked beyond cerebral palsy and saw a witty, smart, passionate soul that deserved to soar. This is Denise’s funny, tearful, true account of living a typical life through unconventional means.
Chapter 1: Take Her Home and Love Her
Chapter 2: Walking Makes You Worthy
Chapter 3: Educate Me
Chapter 4: Meeting Mrs. Steele
Chapter 5: First Love, Disco, and Theft
Chapter 6: On the Shoulders of the Giant
Chapter 7: The Unlikely Ballerina
Chapter 8: The Year from Hell
Chapter 9: Do Da Redux
Chapter 10: Designer Labeled Identity
Chapter 11: Young Love, Big hair, and Hot Rods
Chapter 12: Falling Down
Chapter 13: Miraculous Feet
Chapter 14: Rising Strong
Chapter 15: High Upon a Hill She Stands
Chapter 16: An Even Bigger Hill
Chapter 17: A Job at the Beach
Chapter 18: Respect Me, I’m A Doctor
Chapter 19: Third Strike
Chapter 20: I'm Right Over Here
According to the U.S. Department of Education, there are 6.5 Million children with disabilities, making up 13% students in schools. Athough the law giving the students the right to public education just celebrated its 40th anniversary, only 63% of students with mild to moderate impairments are educated in primarily inclusive settings, and only 13% of students with multiple disabilities (like Denise Lance) are learning alongside typical peers. Inclusion has a long way to go. Therefore, this book is not only a look back, but a push for more inclusion of future students like Denise. This book will interest parents and family members of children with disabilities, teachers who are trying to include students in general education, and those interested in disability rights and history.
Whether or not their children have disabilities, most parents face situations in which they have to choose whether or not to follow their instincts. This book will encourage them to go with that gut feeling.
Beyond the obvious readers, the story will interest anyone looking for a hopeful story, with distinct set of challenges, characters for whom to root, and an overall happy ending. Most people has been told he or she could not do something. This story encourages them to try anyway.
Denise Lance (TEDxKC 2016 Challenge Winner) was one of the first students with severe disabilities to be educated in an inclusive environment alongside her peers without disabilities. A retired disability researcher, she now focuses on writing and artistic endeavors, including folding origami with her feet. She has been an assistive technology consultant, research associate, online instructor in special education and English, and a freelance writer. She holds a B.A. In English and psychology from William Jewel College; a masters and Ph,D. In special education from the University of Kansas; and an M.A. In English from National University,
I am active on many social media platforms:
Facebook: 322 Friends, 82 followers on author page and growing.
Twitter: 466 followers and growing daily.
Pinterest 378 followers
My TEDxKC Talk has had over 2000 views on YouTube.
I am actively publishing content to my accounts to gain followers who are potential readers, and I will be increasing that effort in the coming weeks. I will be answering questions about CP and linking to excerpts and other writing on my Facebook page and website, posting videos to my Toerigami Channel on YouTube, and posting artwork to all accounts. Some of my artwork will be offered as bonuses to preorders.
In addition, I plan to:
*host a Facebook Launch Party with prizes.
*Run adds on Facebook to target audience.
*Write guest blog tour articles and interviews on disability and related web sites.
*Reach out to the Curator and volunteers of TEDxKC to help spread the word about the book.
*Send out press release.
*Start a page and giveaway on Goodreads.
*Create an author page on Amazon
*Schedule local speaking engagements to schools, libraries, and organizations
While there have been several memoirs published by authors with cerebral palsy and other disabilities, the condition is quite varied in each person. Knowing someone has CP tells one very little about what they can and cannot do, as it affects each person differently. The life circumstances of each person also differs, separating all of our stories.
Zach Anner's *If at Birth You Don't Succeed* (2015) is told with the main objective to be funny, since Zach is a comedian. Zach is about 20 years younger than me, and he writes from a male perspective. Therefore, his educational history and experiences, especially with puberty, dating, and concerns about body image are different from mine. Zach also has very good speech and always uses a wheelchair, so our experiences are not necessarily comparable in the way CP impacts our lives.
Fran Macilvey's *Trapped: My Life with Cerebral Palsy* (2016) does come from a female perspective, but her family life in the setting of Africa and Scotland separates her story from mine in terms of location and adult experiences.
Abbey Curran's *The Courage to Compete: Living With Cerebral Palsy and Following My Dreams* ()entails Currans experiences growing up with CP and competing in the Miss USA Pagent. It is a a book of encouragement and is intended for young adults with disabilities.
Jacy Arthur's *If You Only Knew* (2011) physical and speech impediments make her story similar to mine in some of the challenges she faced in starting school. However, her deafness adds a layer to the barriers she faced. Jacy grew up in the U.K., which has a disparate educational system from the U.S. Her narrative is quite matter-of-fact and lacks much detail, especially in her early reminiscences. My telling has more detail, dialogue, and depth, so it falls into more of the creative nonfiction genre than this book.
Of course, some readers may associate this book with Christy Brown's famous memoir turned film *My Left Foot* (1954), which was written long before my birth. Christy had only a typewriter, while I eventually was greatly helped by using a computer. It took me until college to begin typing with my feet and even longer to try doing art this way. Again, the male perspective of having a disability separates his story from mine, as does the setting, growing up in an Irish family with 17 siblings in the mid twentieth century.
In summary, my book differs from other memoir of cerebral palsy in that it is a rich narrative story told from a female perspective, resting on the cusp of the movement to give students with disabilities the right to education in the U.S. Additionally, no book has yet addressed the experience of a student with severe speech and physical impairments who was fully included with throughout her education.
The Unlikely Ballerina
I crossed the stage at the Leid Center at the University of Kansas, shook hands with the Chair of the Department of Special Education, and then turned around facing the audience to be “hooded.” Dr. Tom Skrtic draped a heavy sash of bright blue and crimson velvet and black satin around my neck, pulled tightly in front and cascading down my back like a backwards scarf.
I searched the audience for Mom, Dad, Sister, and best friend Heidi, giving them a huge smile. Just then, Mom leaned to Sister and whispered, teary-eyed, “And all we ever wanted was for her to be able to hold her head up.”
I held my head high the day I became “Dr. Lance.” It was the culmination of seven years of hard work and achievement of a dream, my dream. Thirty years earlier, my parents’ dreams for me were much simpler than earning a Ph.D.
I was an unexpected addition to my family. My parents thought that they could not have more children because my Dad had the mumps and they went “down there,” so his doctor considered it a natural vasectomy. My sister was 17 and not really thrilled to have a pregnant mother chaperone her senior year activities. My brother was 15 and bit more enthused, planning fishing trips and baseball lessons with his new baby brother. He later told Mom that he loved me anyway despite my being a girl. My parents were surprised, but had considered having more children before the mumps, so they just settled into the idea. My mother was 38, and my father 43.
My mother thought she had the flu initially and was sick those first few months. Nothing differed from her previous two pregnancies. At eight months, she could not see her toes for the baby bulge jutting out from her thin frame.
On October 29, 1968, she had a doctor’s appointment at which everything seemed fine. Though he thought she had several more days to go, but later that day, she went into labor.
As I was about to be born, the doctor discovered that I was in breach position—feet first, and the doctor used forceps to turn me around head first. Back then, the technology used to monitor fetal status was not available.
When I was born, the umbilical cord was wrapped around my neck and tied in knots, cutting off the oxygen. It was not clear whether the tangled cord resulted before as I moved in the womb, when I was turned, or if some combination led to the result. I was not breathing, and the nurses had to blow air into my lungs through an intubation tube. My mother estimated that I was without oxygen for several minutes, but I have no specific details.
In the days following, the doctors suggested that brain damage may have occurred, but that the extent was not determinable yet. I asked Mom many times over the years how she and Dad felt at this point, facing the possibility of raising a child with a disability. “Were you scared, angry, or what?”
She said they were afraid that I would die, but that the long-term implications did not occur to them. “You were our baby, and we knew we would do whatever we had to do for you,” she explained.
The doctor and nurses came in and told Dad that Mom could go home, but that they wanted me to stay a few days for observation.
“You might as well keep both of them. Jean won‘t leave that baby,” he told them. He was right. They may have left me physically two years apart on May 23, 2003 and May 27, 2005, but neither Mom nor Dad has really left me.
Wichita was the nearest large city to the small town of Neodesha. My parents took me to several doctors there, looking for an assessment of my condition and some kind of prognoses. The diagnosis was cerebral palsy, but my parents did not know what that meant. Most of the doctors were less than encouraging, emphasizing all the things I would never do: “She’ll never walk.” “She’ll never talk.” “She’ll never write her name.”
One of these so-called experts, ironically named Dr. Lance, said, “She’s too alert to be retarded. Her eyes are too bright.” My parents’ opinion of my ability matched that of this lone dissenter. They shrugged off the others’ expert opinions.
As for how they should help me with my obviously delayed motor skills and other developmental delays, none had any suggestions. Most advised my parents to put me in an institution and forget me. One was a bit less harsh: “Take her home and love her because that’s all you’ll get to do.”
Mom and dad opted to take me home and love me, alright. But placing limitations on what I could do never entered their minds. Having raised two children already, they decided to just do as they had done with Sister and Bub, adapting for what I couldn’t do as needed.
I did not crawl as an infant because my legs were trapped in braces that did not allow me to bend. Instead, I rolled where I wanted to go. I also had a regular infant’s walker (The kind they outlaw now for notoriously tipping over.) in which I scooted around the house.
When I was nine months old, Dad had to go to Texas for six months to work at another refinery. One night on his way home to our temporary apartment, he bought me a tiny wooden rocking chair. After dinner, he sat me in the rocker, and I sat for several minutes rocking and smiling. Dad was bent on one knee about two feet way, taking pictures, “Kodak Dad” in action. All of a sudden, I stood up out of the chair, stood on my own for a minute, took three wobbly steps and fell into Dad’s arms. Dad could not sleep that night. “She’s gonna walk. I just know it!” He told Mom. The next day, he put me in the rocker again, stepped back, and waited. Nothing. I rocked and rocked, but never attempted to stand or take a step. I think he gave up trying after a few weeks. He was right. I would walk, but it was six years later.