Wednesday, October 3, 2012

It's Easier To Dance: An interview with Annie Laurie Harris Plus Kindle Fire Contest

Today I'm talking with Annie Laurie Harris. Her memoir It's Easier To Dance details her struggles with cerebral palsy.

In addition, Annie is having a contest for a Kindle Fire. Please see the details at the end of the interview.


1) Please tell us about yourself. 

I am an older African-American woman who continues to live life fully and is an influential member of the community. Although I have lived my entire life with cerebral palsy, I have not allowed this complex disability to entirely define me or completely determine my activities. I have pursued and accomplished most of my goals to be well educated, well traveled and a contributor to society. The one thing I have not done that I still long for is to be married. I never imagined myself being single all my life. It is true that the odds are not in my favor. So what else is new? They never were!

2) Tell us about your book.

 Each chapter touches on some aspect I hope will help others facing challenges that seemingly have no end. Among them are, chronic, painful disabilities, a history of abuse, multiple deaths of loved ones. There are also many high points; e.g. receiving an excellent education with highest honors awarded, working in the "real world", a wonderful love affair, international travel, enduring self confidence and being "at home" in this body while having an international view point by doing mission trips to Haiti and Africa. There is little detail and much is left to the readers' imagination. It is a brief trip through history. One thing is very significant: I chronologically define and date ALL the laws passed regarding disabilities from 1972 -1990. The legislative acts have been made laws in my adult life. I align them with the civil rights laws of the 1960s. This has not been done before. 

3) Why did you decide to write a memoir about your life? What was your goal in doing so?

In the last several years I became aware that many of the misconceptions and stereotypes about those with disabilities that I felt were part of the past were still widely held. I was particularly disturbed by the fact that care providers at every level continued to manipulate and abuse those most vulnerable. I didn't want to believe this so I began to do some research. I also joined a closed Facebook group for parents of children with disabilities. There I found descriptions of surgical procedures that were done when I was a child (I refused them) that hadn't worked, were still being preformed. In addition, regular doses of pain killers were being prescribed while physical therapy was not included. I was deeply saddened. Then, quite by accident I discovered discrepancies in what I was being told by government employees and what the law actually said. I just wanted to document my life and that other choices can be made! I hope I helped a few people.

4) What is something you think that a lot of people misunderstand about people with cerebral palsy or people with neuromotor disabilities in general?

I think most people misunderstand that the physical manifestations of these disabilities and the intellect are unrelated. It just depends on what part of the brain is affected.

5) ) What fundamental themes do you tackle in your memoir?

Courage, self definition, bias based on ignorance, self discipline and responses to all the "isms" we live within our society

6) You grew in the 1960s, a period not exactly renowned for race relations in America, and this something your memoir naturally explores. Do you feel that having a disability in addition to being a racial minority granted you a different perspective on any of these issues during those tumultuous times, and for that matter, today?

Living as independently as I choose to do doesn't give me much room to fool myself about the way society sees me. I face the stares and "whispered" comments every day. Therefore, I tend to have a "call it as I see it" approach. For instance, racism is not a "diversity issue". If you do not identify something for what it is, how will a problem ever be solved or an acceptable resolution be reached? How will you even know which questions to ask? One of my problems is seeing the "big picture". Since everything takes so much time and effort, I often fail to conceptualize the larger view.

7) Do you have any other books in the works? 

I am outlining a book on advocacy. I also want to write about the 14 years I practiced yoga and the time I spent living in an ashram.

8) Do you have any links to any excerpts you'd like to share? 

 To end on a fun note:

It’s Easier to Dance Chapter 9

AUGUST 5, 2012

I am posting the entire Chapter as a tribute to Penn State Football. Training camp will be different than ever before given recent events.. This chapter will let you know why I will be there as I have been for any years. GO LIONS!

Life on the Gridiron

I so loved working with the young athletes that came to study hall, where I worked as a monitor. I learned about the sports and the academic requirements they had to maintain in order to play. I had been a football fan for over 20 years, the Pittsburgh Steelers and then my Penn State Nittany Lions.

One day as I was riding my scooter to campus on the bike path where Joe Paterno regularly walked. I asked him if I could come to football practice. “Sure, he said, come on.” I’m sure he thought it would only be a time or two. That was about 13 years ago.

It is widely known that the legendary head coach prefers closed practices. In fact, people walking by the fenced-in practice field, hoping to get a peek, are quickly chased away. However, I had the immense privilege of watching from the sidelines as new recruits and upper classmen players honed their skills for each opponent. I suppose they wondered what a 40-something year old woman, who used an electric scooter for mobility, was doing at practice so regularly. Little did they know that I was learning how to approach living with cerebral palsy while growing older and slowing down. What would now be my motivation to remain physically active, engaged in my community and setting an example for the next generation of disabled and non-disabled young people? I had met many of the goals I set in my life and had come to accept that some would not be realized in my lifetime.

As I watched the developing players prepare for their next game, I began to think of winter, the ice and snow, the cold temperatures and the isolation it brought to me as an “opponent.” If I was going to level the playing field, I had to have a game plan, a strategy and a playbook. I had to train myself both physically and mentally just like the young men I had been watching at practice.

Just as in football, success is determined just as much, if not more, by mental discipline rather than physical agility. As I watched new recruits make the transition from playing in high school to college, I learned from their playing through the soreness of preseason camp every August. This became particularly obvious to me when my young friend, Jordan Norwood, joined the squad in 2004. He was considered little, 5’10”, 150 pounds, and not a lot of muscle. Every time I asked him how he was doing, he said “My ham strings hurt, Annie, my ham strings hurt.” I could tell he was in pain, but every day he was right back out there on the field. He became my role model for living through the winters of Central Pennsylvania. It’s my home.

At nearly every practice there were injured players, those who were either going through rehabilitation due to an injury, or were not allowed to engage in any contact. They still had to be at practice and would be riding stationary bikes or just walking along the edge of the field. A common sports-related injury, a torn ACL, requires time for the swelling to go down, then surgery, then a nine-month rehabilitation period. The injuries were hard to watch, much like my falls early in my life. I took on the role of encouraging them, letting them know I was thinking of them and waiting to see them back on the field again.

This is how I began to learn to live with physical pain that might get better and might not. It would go away sometimes and flare up again due to stress, weather, or any variety of reasons. So I learned the importance of “showing up.” In the winter, cold or not, hard to get up or not, layers of clothing that took an undetermined amount of time to dress each day, boots that took 15 minutes to put on, and muscles that did not cooperate; I was still required to be present and accounted for at my regular activities.

Once I saw the athletic director, Tim Curley, after a basketball game in a snow blizzard. He said, “Annie, what are you doing here?” I answered, “I had to sell programs at the game.” He offered me a ride home, and I instructed him on how to disassemble my scooter and put it in the back of his SUV. I think it was the first time he realized what it took for me to be at any function in the winter. People often say that they saw me riding my scooter up Atherton Street, and it encouraged them. I am rarely aware of being seen by others, because it takes so much energy and focus for me to drive my scooter, maneuver curb ramps and be aware of traffic when crossing the street. It was only after hearing numerous times over the years, “I see you everywhere!” that I began to realize the impact of my presence.

I saw bad practices as well as the good ones, players yelled at, corrected and words of approval, words of well done. I saw passes caught and dropped and intercepted by peers who cared about one another. And I became a part of that team. One administrator called me “coach,” and asked where I was if I missed practice. The graduate assistants would watch for the orange flag on my scooter and tell someone, “Don’t close that gate yet, here comes Miss Annie.” I’ve never had that sense of belonging before. Many of the coaches and players would stop to greet me, some with a hug, when practice was over.

It was in the spring of 2006 that I sustained a fall while exercising on the elliptical machine that threatened to “take me out” of the game of life, and I didn’t tell anybody. As a child it was engrained in my thinking that if I couldn’t take care of myself that I would be put in an institution. This belief kept me from telling anybody how much pain I was in until I realized that something must be terribly wrong, the pain was unbearable. I knew I had to see a doctor; an orthopedist, the specialty I had always avoided since childhood.

By that time, I had become familiar with seeing Dr. Sebastianelli, Director of Penn State Sports Medicine, on the sidelines at practice. I had watched him put young football and soccer players, who had sustained career-ending injuries, back in the game and some who went on to have professional careers. That’s the doctor I wanted to see, only him, nobody else, a doctor who would be convinced that he could restore me to an independent lifestyle with even greater mobility. People kept telling me that he was too busy, and he probably wouldn’t see me anyway. They encouraged me to see a doctor that would have the time to see me sooner, because I was in such pain. But I interrupted them, and said, “He’ll see me, I’ll wait.” I didn’t argue, I simply said repeatedly, “I’ll wait.” That fall, Dr. Sebastianelli evaluated my situation, showing me the X-rays of the discrepancies between my hips. After several alternative treatments were tried, it became clear that a total hip replacement was necessary.

This type of surgery is not typically done on someone with cerebral palsy due to the amount of muscle spasticity that could cause the hip to pop out. Another factor is a previous surgery that is often routinely performed between the ages of 12 and 14 on preadolescent children with this complex disability involving a significant amount of muscle spasms. It is often the case that a child with cerebral palsy is unable to straighten the leg and put the heel flat on the floor, bearing weight on the entire leg. As I understand it, this procedure involves cutting the hamstring at about the mid-calf, enabling the heel to be put on the floor. My childhood classmates who I watched go through this surgery and the recovery process told me that they fell more often and had more pain following this procedure. Therefore, when I reached the age where the orthopedist at my special school wanted to perform this operation on me, I didn’t want to go through what my classmates reported happened to them. I later accomplished the extension of my hamstrings by stretching them later in life when I began to practice yoga, which I write about in the chapter on prayer and discipline.

When I developed arthritis in my late fifties, a total hip replacement was possible because I would be able to extend my right leg, enabling me to walk on it. Being able to bear weight on the prosthetic hip is necessary for the prosthesis to work its way into the bone which allows the patient to walk again. If my hamstrings had been cut at such an early age, it is doubtful that I would have had the extension necessary to resume walking. I’m not suggesting that this procedure never be done since I am not qualified to make that judgment. However, from hearing the current stories from parents today, my understanding is that sometimes the decision to do such an invasive procedure is made too quickly. Parents should understand and be told of other options.

Although the degree of muscle spasticity was a significant risk factor in my case, the fact that I had maintained not only the ability to walk, but was able to regularly exercise on the treadmill and elliptical and lift weights allowed me to convince Dr. Sebastianelli to take the risk. I remember that day I approached him on the football field determined to convince him to do the surgery. The only time he looked away from me was when he said, “It’s not a matter of whether or not we can do it, it’s do you want to take that risk?” After being unable to convince him by reminding him of how many risks I had already taken and won, I told him that we had a tough game ahead of us, I wanted to play ‘til the whistle blew, but I would not ask him for overtime. This did not sway him, so I simply took him by the hand, looked into his eyes, and said “Please don’t give up on me, I need you.” For just an instant his professional persona dropped, and I saw the eyes of a very compassionate man, who silently agreed. When the athletic season ended, I was scheduled for surgery, and within 8 weeks I could walk using a walker with greater balance and posture with significantly less pain.

My wonderful surgeon had chosen Susan Fix, a physical therapist who was equally brilliant at her expertise. With her encouragement, I learned a greater sense of balance and flexibility in being able to walk. This new sense of coordination extended to the upper part of my body as well. I could pour things easier and pick up a glass and drink without a straw, and put a shirt over my head without leaning up against something for support. Dr. Sebastianelli explained this was due to my nervous system’s retraining itself based on a new level of stability in my pelvis. I’m not giving the professionals all the credit for this substantial improvement, because it was my football mentality that I had learned on the Penn State practice field that allowed me to train myself with an athlete’s sense of determination to get back in the “game of life.” I could once again do all my own personal care, cooking, light housework and most significantly, travel independently again.

To my many friends and fellow football fans, especially the Penn State coaching staff, I hope this conveys not only my love for the sport and the job that they do, but the gratitude I feel for being welcomed as someone who belongs on the sidelines at practice.


Thanks, Annie.

If you'd like to read more from Annie, please check out:

Website and Blog:
Facebook Page:

It's Easier to Dance is available at Amazon and Barnes and Noble.

If you're interested in entering the Kindle Fire Contest: 

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