Kristen DeAndrade is living proof that perseverance prevails. Born with achondroplasia, the most common form of dwarfism, she is a woman on a mission to erase barriers and eradicate stereotypes. A newly published author of her memoir, “Little Legs, Big Heart,” Kristen gives people an opportunity to learn about and change the dialogue surrounding dwarfism.
Tell us a bit about yourself, your family and your background, where did you grow up?
Born in Massachusetts, just south of Boston, I grew up with my parents and younger brother, Derek. Living with achondroplasia comes with its own set of medical hurdles and mine began when I was a toddler. My family and I made yearly treks to Baltimore, MD for appointments with an orthopaedic specialist. Due to curvature in my spine I wore a back brace. And there were frequent visits (sometimes emergent) to the local paediatrician for ear infections.
For the most part, living with dwarfism did not stop me from being a kid. -- I attended school, was a cheerleader, played softball, did Girl Scouts and was also on the swim team. Derek and I would build bike jumps out of bricks and plywood in the driveway, play rousing games of manhunt with the neighbours and tear up the snow or water on our skis. We were raised on tradition, the importance of family and the New England Patriots. We travelled to Maine throughout the year, took trips every April to Florida and went Christmas carolling on Christmas Eve. Whether it was Beanie Babies and Barbies or Tiger Beat posters on my wall, there was nothing small about my childhood enthusiasm and imagination.
Being absorbed by the important things in life -- family, friends, sports and extracurriculars, my young mind was oblivious to the judgments and ridicule. I was driven by curiosity, taught to have hopes and dreams just like any other child my age and believed that I was capable of anything.
Today you are an author, motivational speaker, yoga teacher and more. Tell us about your journey so far.
Over the course of my life, people have told me “no” either out of fear or out of ignorance. My parents quickly shot down my request to play youth football and even soccer for the obvious fear of my safety. Those ‘nos’ were a little hard to digest as a young girl but I eventually settled for cheerleading, softball and swimming.
When I came to the realization that society had an auto-pilot way of thinking and immediately discounted me and my abilities just because of my height, it became my life’s mission to rise above. For every ignorant “no, you can’t,” I turned around with a “yes, I can.”
This went far beyond physically proving myself. Growing up in a world made for people who are at least 4’10” had it’s emotional challenges as well. The laughing, staring, pointing and overall societal ignorance began taking its toll when I was old enough to understand that it was happening because I was living with dwarfism and looked ‘different’. What I didn’t want to do was stoop to the level of those who discounted me and retaliate with judgment. So, rather than use my voice to fire back negatively, I used it to educate others and began sharing my story.
It started in third grade when my class read a book called, “Thinking Big,” about a little girl, like me, who had achondroplasia. My teachers saw it as an opportunity for me to educate my classmates. So, my best friend and I made a movie about what it was like to live with dwarfism. After that, part of me knew that my voice would eventually take me places. Today, I continue to share my journey with students, medical professionals and various communities in hopes of educating others on dwarfism and letting those facing the ups and downs of adversity know that they are never alone.
Writing has always been an enormous outlet for me, especially when I was a little girl. I kept a diary and journaled often. It was a way for me to feel all of the emotions that come with living in the face of adversity. As I grew older, I realized how powerful words truly are; spoken, written, thought or read to ourselves and to others. Today, my journal and diary entries are a self-published memoir about growing up with dwarfism and journey with limb lengthening surgeries.
As a child, words like limitation and disability did not hold profound meaning when pertaining to me. Short stature was a part of who I was but it never defined my capabilities or kept me from happiness. That all changed in my adolescence as I unknowingly began to give others the authority to base my potential on my height and being different. I was bullied in the form of both mockery and isolation. There is nothing worse than being outed, degraded or unheard and all of that began to take a toll. When I was a teenager, I began dealing with depression and anxiety and my self esteem continued on a never-ending roller coaster; loving every ounce of myself one minute and wishing I was someone else, the next.
While in college, I was introduced to the practice of yoga and a new journey; one that continues to be full of self-discovery, healing and love. There aren’t many things in this world that are infinite. Yoga is. It’s always changing, evolving, providing opportunities for learning and it means something different for everyone. I have drawn strength from my practice. The poses; they’re simply shapes. Being able to balance or invert, modifying and using props — that doesn’t classify my practice as good or bad. Yoga, on and off the mat, has taught me that most of life’s circumstances are chance, not choice. The lessons we learn and magic we make from circumstance, are in our control. Take what life hands you and decide what you will make of it.
My body or soul suit, as I prefer to call it, has carried me through so much. It has also been my biggest teacher. Whether through writing, yoga or speaking, I am confident that my presence in this life is to remind others that we are resilient beings with enormous capacity for change. The more we understand ourselves, the faster the wall of judgment crumbles, our differences lose their prominence and we see ourselves and each other as the beautiful, brilliant beings that we are. Every ounce of joy, fear, anger and sorrow has brought me to where I am today and for that, I am grateful.
3. In 2016, you had to make the decision about a life-changing surgery which could result in you being paralysed. Your doctor told you that whatever happens, you're going to have to "fight like hell". What happened next and how did you find the strength to push through?
Without a doubt, spinal stenosis and all that accompanied my paralyzing diagnosis, has been, by far, one of the most challenging hurdles I have ever overcome in my 35 years.
In 2015, I lost feeling and sensation from the waist down. Doctors in South Carolina misdiagnosed and mistreated me. Over the course of a year I was slowly becoming paralyzed and experiencing pain levels that were astronomical. At night, I would claw my way into bed because I had little to no function of my lower extremities and I was popping anti-inflammatories like candy. After seeking help and opinions from other potential doctors, I realized how prevalent discrimination in the medical world is, especially when it comes to the treatment of individuals with dwarfism. They suggested pain meds and physical therapy -- band aids for a condition that was worsening by the day. Overcome with physical pain and feeling unable to advocate for myself was defeating and disheartening.
A year later, I found Dr. David Feldman at the Paley Orthopaedic & Spine Institute in West Palm Beach, FL who specializes in skeletal dysplasia and is a skilled spine surgeon. At my initial consultation with Dr. Feldman and his team, he took one look at my MRI and determined that I was already suffering from acute paralysis and was unsure if surgery would even be successful. Deep down, I knew I needed to take a chance if I had any hope of staying on my own two feet. In May 2016, I underwent a 9 level spinal fusion as well as laminectomies and decompressions on my thoracic and lumbar spine. In my head, I thought that I would have surgery, do a few weeks of rehabilitation and go back to life. No thought could have been farther from the truth.
In a little over two years, I underwent twelve surgeries, dedicated countless hours to my rehabilitation, paid thousands of dollars in medical bills, made an unforeseen move to Florida, found myself financially dependent on my parents and on disability -- it was a life that I never imagined for myself and as a result, I hit rock bottom. Dealing with PTSD, depression and anxiety, I had an extremely difficult time finding the light in my deep, dark hole. I was rolling back into the operating room every three months or so because my body was not cooperating and continued to require ‘tune-ups’ as I came to call them.
During one particular appointment, I remember sitting in my back brace, on the verge of tears, bracing myself for more unfortunate news. Dr. Feldman came into the room with his amazing PA Tiffany, sat down next to me and said, “I need you to listen to me. I know that you have been through hell and back but the woman sitting in front of us is not the woman we initially met. No, you’re not out of the woods and you are going to have to fight like hell to stay on your feet. We are not going to give up on you. We believe in you.”
Recounting that memory brings tears to my eyes. Throughout the course of my life I have seen many doctors. They know you by your chart. They know you by your x-rays. They know you by your medical record number. They consult, diagnose and operate. During that clinic appointment, I felt like more than just a patient to Dr. Feldman. I felt human. It was a pivotal moment in my healing. His words, care and compassion were the spark I needed to light the fire under my ass and do whatever it was going to take; work harder than ever, advocate for myself and rebuild my life.
How did I find the strength to push through, you ask? My community. For the beautiful souls in my orbit who have seen me sitting in the dark valleys and celebrated with me on the brightest mountain tops -- I am forever grateful. My family and friends have been unbelievably supportive. Dr. Feldman and his team are incredible. The physical therapists at The Paley Orthopaedic & Spine Institute pushed me most days and gave me space to cry when I needed it most. The people in my life helped me find the grit and grace to rise above. They say it takes a village and I have been blessed with a magnificent one.
4. In your TedX talk, you share why it's "Ok to Not Be Ok" - and one of the things you've learnt is that pushing your feelings aside never helps. What is one message you want people to take away from your incredible journey so far?
When children cry, whether it is because they are hurting physically or emotionally, we have a tendency to shush them. For most of my childhood and adolescence, I hid my feelings of fear, sadness and anger. There seemed to be so much shame surrounding anything but joy.
No matter what you’re going through, I encourage you to be open about it. There are always people willing to listen; whether it is a parent, a friend, a doctor, a therapist or even a complete stranger. We all have dark emotions and days. Sometimes, feeling and being heard, is the light we need to clear the clouds and rediscover our joy. Crying and being vulnerable, whether by yourself or in the presence of someone else, is beautiful. Don’t deny yourself the opportunity to heal your heart or help someone else heal theirs.
5. If you could go back and tell your younger self one thing, what would it be?
Everything matters when you’re growing up; what clothes you wear, what you eat, who you associate with, your interests. Junior High and High School were so very challenging for me. I felt like I had to try and be someone I was not.
I think back to Shel Silverstein’s book, “Where The Sidewalk Ends” and his poem:
Listen to the mustn'ts, child.
Listen to the don'ts.
Listen to the shouldn'ts, the impossibles, the won'ts.
Listen to the never haves, then listen close to me...
Anything can happen, child. Anything can be.
I would tear this very page out of Shel Silverstein’s book, fold it up, tuck it into my younger self’s pocket and remind her that people are always going to have something to say. Negativity is inevitable and people will doubt you. Another person’s words (or actions) are not a reflection of you but of them.
And then I would whisper into my younger self’s ear, “love lies in the depths of your heart not the length of your legs.”
6. Last year you published your first book: Little Legs, Big Heart: One Girl’s Journey of Acceptance, Perseverance, and Growth, tell us about your journey from writing as a child to starting your first blog and then to publishing your first book. What has the response been like?
Whether it was keeping a diary, openly sharing my journey living with dwarfism, or getting lost in a book, words have always carried importance. A true story has the potential to heal as much as modern medicine and I have come to find that connections are best made by revealing our weaknesses, challenges and failures because we all have them.
Throughout all of my limb lengthening surgeries with Dr. Paley, I kept a journal and wrote about everything. It was a way for me to feel, let go of the negative emotions that no longer served me and also celebrate my wins. An x-ray technician, Amy, at the hospital told me that I should write a book. Ever since then, a part of me knew that my words would one day become a book.
After college, due to underlying pain issues, my body required medical attention and an extended out of state stay. In an effort to feel all the feels and keep family and friends updated with my progress, I created “Little Legs, Big Heart,” the blog. Over the years, I continued to write about my personal experiences and day-to-day thoughts -- some of the blog posts were published on Mind Body Green and The Mighty.
The book was a major work in progress for years. Think: computers crashing and floppy disks being a thing of the past. While out of commission and healing from my most recent spine surgeries, I had too much time on my hands. Backed by family and close friends, I bit the bullet and self published my memoir, and biggest accomplishment to date, two years ago.
Right before I sent in all the paperwork and the OK to share my story with the whole world, I told myself, “This is for you, Kristen.” My goal was never to make a living as a published author. To have the first 16 years of my life in book form, with a title that remains my motto, is a dream come true. I owed it to myself and everything I’d been through to fulfil the wishes of a little girl on a mission to share her story. If one person read the book and either learned something about dwarfism or was able to relate in some way to my overcoming adversity -- these little legs would be thrilled.
The response has been incredible; nothing I ever expected. People from all over the world have reached out telling me that they have read my book. Parents of children with dwarfism, individuals who have been through limb lengthening surgery and complete strangers. Needless to say, my heart is full.
7. You recently had an experience with a casting company who messaged you on Instagram for a role for 'little people' for a 'circus performance' which you wrote about on social media with the hashtag #EnoughIsEnough. Tell us about this experience and the power that speaking up has had.
Because I am short, have scars, and physically look different, people put me into a box and label me as funny-looking, a freak, a midget, and a source of entertainment. However none of these adjectives could be farther from the truth. A diagnosis should never justify ridicule or disrespect of any kind.
The way that individuals with skeletal dysplasia are portrayed in the media, whether on television shows, in movies or at large events for entertainment purposes, essentially gives society permission to see children and adults in the community as sources of laughter and entertainment. I am speaking directly to roles like clowns, elves, goblins and events like midget wrestling and dwarf tossing, etc. As someone who deals with comments, gestures and other issues of the like on a daily basis, inquiries like this come off as highly offensive and belittling.
Large media companies and influencers could be using their platforms and voices to set a precedent but many aren’t. Shift needs to happen. Society needs to change its attitude and have a more compassionate view of the human condition. Those of us with dwarfism are not less than. We are not to be feared or humiliated because of our stature.
When I called out the company who reached out wanting to hire me to “be at a circus performing a dance in a costume,” I was being loud for the parents raising babies with dwarfism. I was being loud for the children who are home-schooled because the bullying has crushed their hearts. I was being loud for the men and women my age who cannot walk down the street without being stared at, pointed at, laughed at, yelled at, harassed or worse, had things thrown at them. I was being loud for those who choose to be quiet out of fear, shame, and guilt. I was being loud for those who have chosen to take their own lives because the sadness and anger were too big of a burden to bear.
In being loud that day, what I learned was both heart-wrenching and beautiful. For one, my eyes opened to just how many people in the dwarfism community, young and old, are directly affected by society’s continued ignorance and how it has become assumed that we have to put on a facade that we love ourselves every moment of every day and wouldn’t ever change the hand we were dealt — in order for society to accept us more.
On the other hand, there are so many people who believe that representation matters and that it is time for the media and entertainment companies to cast individuals with dwarfism in roles that an average height person would also be cast in; highlighted for who they are and not what they look like. We all deserve to see somebody who looks like us in movies, commercials and magazines etc. portrayed as a human being who is shown kindness and respect.
Inclusivity speaks volumes. It takes a village and speaking up has introduced me to the souls who are making the conversation of representation and inclusivity louder.
8. You are a role model for girls everywhere, who inspired you when you were growing up?
When I was little I was fascinated by Amelia Earhart. She was driven, accomplished, never boastful and a bit of a rule breaker. I saw so much of myself in her. One of my favourite quotes from her, "Women, like men, should try to do the impossible. And when they fail, their failure should be a challenge to others,” made me want to prove people wrong.