Richelle Heath

@richelle-heath | contributor
Disability Advocate, Co-Founder of the CPDreamTeam, Admin @ A Stairway to the Stars Heaven’s Journey with CP
Richelle Heath

March Is Cerebral Palsy Awareness Month

by Richelle Heath and Heaven Ramsey There is an amazing platform known as “social media.” Near and far, we’re all connected. Today, wherever you are, we ask that you close your eyes and picture yourselves in a large auditorium. Are your eyes still closed? Raise your hand if any of these are true: How many of you have a disability or know someone with a disability? How many of you have ever been subjected to bullying? How many of you have ever felt alone? How many of you struggle to tell the truth about your feelings due to being an outcast? Now open your eyes and look around. You’re not alone. Today we want to talk about cerebral palsy. Have you heard of it? My name is Richelle Heath and I’m here with Heaven Ramsey. We’re co-founders of the #CPDreamTeam. Together, we bring awareness to the most common childhood motor disability. Sadly, it’s not recognized the way we would expect in 2020. There are over 17 million people worldwide affected by cerebral palsy. That’s about one in every 323 children. We even have our own awareness ribbon. Our color is green. Why is green the color of cerebral palsy awareness? Green is associated with new growth, vibrant lives, and renewal of life! This is because no case of cerebral palsy is the same. Each and every one of us is affected differently. This is important because we’re all growing and learning daily, living our vibrant lives in our own, unique individual way. Green symbolizes that for our community of 17 million strong. March is National Cerebral Palsy Awareness Month and March 25 is National Cerebral Palsy Awareness Day! Let’s address some misconceptions: First, some people think children with cerebral palsy can never learn to walk. This is simply not true. Over half (about 50 to 60 percent) of children with CP can walk independently. Another misconception is that CP is the same for everyone. There are approximately 17 million people worldwide affected by cerebral palsy and no two are affected the same. There is no certain way a person with CP should look and no certain abilities they should or should not have. Finally, far too many people believe a child with cerebral palsy has a limited future. Since thousands of children are affected by cerebral palsy, and a new generation of adults are navigating the world of this disability, this has proven not to be the case. There are many who are affected by CP who are very successful. There are doctors, athletes and even entertainers who live with CP and that’s just a few of the professions we pursue. Let me introduce myself. My name is Richelle Heath. I am 43 and I have spastic diplegia cerebral palsy. My journey began in 1976 as an adopted child whose parents knew nothing about cerebral palsy. They were told by a fellow church member that I might have CP because my legs weren’t moving in accordance with typical childhood developmental milestones. After guidance and referrals, I had my first surgery at 2 and my last at 16 years old. My parents gave me every opportunity, regardless of cost and time, so I would have the best chance of walking independently, driving a car, graduating from college and working in corporate America. I am proud to say I have accomplished each and every one of those goals. My dream was to be completely independent — the kind of independence that is often taken for granted. At age 37, I began using Facebook to see if I could find other people with cerebral palsy facing the same daily struggles as I do. I just knew that somewhere out there, others were dealing with similar challenges. As we age with cerebral palsy, life often gets harder. Doctors who treat adults with cerebral palsy are basically non-existent. You can’t cure CP but you can treat the symptoms with physical therapy, occupational therapy, speech therapy and a myriad of medications. It is important to remember that no one with CP is the same. Our bodies are all different and will continue to change, along with our abilities. As you age, disabled or not, your body will continue to break down. That’s life. We all need to love ourselves today and every day in the bodies we were given. We all want to be heard. We want to be accepted. We want to be understood and cherished for our differences and experiences because together everyone achieves more. Heaven’s Story My name is Heaven Ramsey. I am 16 years old and I have mild spastic diplegic cerebral palsy. I started my Facebook awareness page A Stairway to the Stars: Heaven’s Journey With CP on May 30, 2013. The decision to share my story has changed my life and allowed me to help others. I made the decision to go back to pageants in 2014, when I realized I cannot encourage others to follow their dreams if I don’t follow my own. I participated in pageants from infancy to age 5 but stopped when an imperfect walk became an issue. Since then I’ve held the titles Little Miss Shining Star 2015, Junior Miss Knox County TN MARS 2017, and Jefferson County Fair’s Fairest of the Fair Miss Beautifully Made 2019. I also recently achieved my dream of participating in my first fashion show and hope to model more in the future. With all this, I am so proud to be the co-creator of the #CPDreamTeam t-shirts for National and World CP Day each year. We’ve had eight successful campaigns with these shirts and are working on the ninth for National CP Day 2020. It has been an honor and a blessing to watch these t-shirts become a central part of our campaign for CP awareness. In conclusion, I hope the takeaway from my story is that no matter your struggle, you should never let anyone or anything hold you back from reaching for the stars and following your dreams.

Richelle Heath

Caring for Aging Parents as an Adult With Cerebral Palsy

One day over a year ago I was amidst fluorescent lights, in a tiny waiting room, waiting to hear what I already knew “Your mom has a form of dementia, most likely Alzheimer’s. That moment, everything I knew in my heart became instant reality. There I was in my instant vortex. My whirlwind of reality just slapped me in the face. Those words echoed and began to resonate. What do I do? Can I fix it? Can I handle this? Am I strong enough? I have spastic diplegia, a form of cerebral palsy that affects my legs. Would they be able to carry me through this journey? Maybe I have to “Faith it till I make it?” Stepping out on knowledge and faith will have to sustain the floods of tears, often in my bathroom in silence. Suck it up buttercup, you have to remain strong for your family. Wipe those salty tears and refocus. Months later I was in another office, surrounded by diplomas, awards and plaques from the most prestigious universities in Georgia to hear “Your dad’s prostate cancer has returned, and it’s not good.” As much as I wanted to cry, I knew I had to be strong for my mom and dad. I distinctly remember holding the office assistant’s hand (a dear friend) and her saying “No, we don’t cry here — we can cry over drinks later.” I started to smile and remember she was right. I have to be strong. I was born a source of strength. My legs carried me 41 years; so let’s focus on the next 41. The journey of being a disabled adult who became the caregiver has opened my eyes in ways I never imagined. I can’t always say I do things right or that I even know what I am doing, truthfully. What I do understand is that my parents shaped me into the woman I am today thanks to all the opportunities they afforded me and still do. I embrace that I have to rely on my faith, my family, my strength, my friends, my knowledge and my understanding that while I may not have all the answers, I have all the ones I need. I have remember that no one has the answers. Sometimes love and faith is all you need. Maybe I have a little Spasticity with Sparkle. That little glimmer of hope, that ray of sunshine, that twinkle in the eye of someone you love reminding you that together we can do anything. The road is long, complex and often misunderstood — but together we can get though it all. We want to hear your story. Become a Mighty contributor here . Thinkstock image by Pablo K.

Portland Launches Accessible Bike-Share Program, Adaptive Biketown

Portland, Oregon is expanding its popular Nike-sponsored Biketown program, a year after its initial launch, to include disability-friendly options. According to the Portland Bureau of Transportation (PBOT), the new program, called “Adaptive Biketown,” is the nation’s first city-sponsored program for riders with disabilities. Portland began considering an adaptive form of Biketown last year at the urging of then-candidate City Council Member Chloe Eudaly, whose son lives with cerebral palsy. At first, officials of the initial advisory committee didn’t understand what creating an adaptive bike service entailed. “The first time they wanted to speak to us, they were like, ‘Give us a list of disabilities, and give us a list of the bikes that work for them,’” said Jennifer Wilde, who works with a nonprofit assisting people with disabilities told the Los Angeles Times. “And that’s just not the way it works in the world of disability, because there’s just so much diversity.” In creating the bike share program, PBOT interviewed and surveyed people living with disabilities and established a public work group to advise the program’s development. “When Biketown launched, I was disappointed that there weren’t bikes for me,” Jeremy Robbins, a member of PBOT’s Adaptive Bicycle Pilot Project Work Group, said in a statement for PBOT. “Working with PBOT and others on developing Adaptive BIKETOWN has been very rewarding. I’m very excited for the launch of this historic project.” While its parent program was originally intended for commuters, Adaptive Biketown is geared towards recreation and exercise. The service offers a variety of disability-friendly hand cycles, foot cycles and multi-person cycles for rental. Those interested in renting a bike can make a reservation by completing a rider profile and arriving fifteen minutes before a scheduled rental for a bike fitting process. Adaptive Biketown services also include helmets, mobility device storage and crate storage for service animals. Adaptive Biketown is shaping up to be both an environmentally friendly initiative as well as an affordable one. It is not uncommon for children’s adaptive bikes to cost several hundred dollars while adult adaptive bikes can cost several thousand. However, Adaptive Biketown offers rentals for as low as $5 an hour for hand cycles, foot cycles and multi-rider bikes. Portland’s adaptive bike share will be run as a pilot program this fall, and will use user feedback to expand in 2018. Header credit: City of Portland

Richelle Heath

Open Thank You Letter to Cerebral Palsy, My Frenemy

What would I say to you, cerebral palsy? As a child I didn’t really know you very well at first. You introduced yourself to me at 11 months old. I began to understand “dis”ability at age 2. You had me cut open, rearranged and refocused. Scars from surgeries began to signify my strength. Not everyone has battle scars from their groin to their ankles. Not everyone understands that your pain became my persistence. Therapy became restorative and salubrious emotionally, spiritually and physically. I can’t walk? What is that you say? You were my friend yet my competition, my frenemy. I was determined to beat you, one footstep at a time. CP, why would I allow you to hold me back? After all, I am so much more than my diagnosis. You don’t really know me. Only I know me! Million Dollar Legs, agreed. Legs wobbly and unbalanced had this inner strength I wouldn’t have known without your teachings. Braces, you became my battle. Wheelchair, you became my warrior. Casts, you became my cause. Crutches, you became my cruise control. Cane, you became my comfort. Walker, you became my wisdom. I learned I had to do things differently, and that was OK. Imagine a world in which we were all the same? I’m me. Proud of my differences, because without my struggles I wouldn’t have found my strength. It’s there. These legs signify my spirit. These arms signify my artillery. They pick me up when I fall. This heart, it signifies love. An open, honest perception that different is beautiful and love is just that. Love! Open, honest, true and without judgment. As cliche as it may sound, I thank you, CP because without you I wouldn’t be me! I am who I am because of you. Would I change me? No! Only what others see. My platform and purpose is you. I want others to know you like I do. Knowledge, acceptance and understanding. We’re going to change the world, this CP and me. We want to hear your story. Become a Mighty contributor here . Photo by contributor.

Richelle Heath

Open Thank You Letter to Cerebral Palsy, My Frenemy

What would I say to you, cerebral palsy? As a child I didn’t really know you very well at first. You introduced yourself to me at 11 months old. I began to understand “dis”ability at age 2. You had me cut open, rearranged and refocused. Scars from surgeries began to signify my strength. Not everyone has battle scars from their groin to their ankles. Not everyone understands that your pain became my persistence. Therapy became restorative and salubrious emotionally, spiritually and physically. I can’t walk? What is that you say? You were my friend yet my competition, my frenemy. I was determined to beat you, one footstep at a time. CP, why would I allow you to hold me back? After all, I am so much more than my diagnosis. You don’t really know me. Only I know me! Million Dollar Legs, agreed. Legs wobbly and unbalanced had this inner strength I wouldn’t have known without your teachings. Braces, you became my battle. Wheelchair, you became my warrior. Casts, you became my cause. Crutches, you became my cruise control. Cane, you became my comfort. Walker, you became my wisdom. I learned I had to do things differently, and that was OK. Imagine a world in which we were all the same? I’m me. Proud of my differences, because without my struggles I wouldn’t have found my strength. It’s there. These legs signify my spirit. These arms signify my artillery. They pick me up when I fall. This heart, it signifies love. An open, honest perception that different is beautiful and love is just that. Love! Open, honest, true and without judgment. As cliche as it may sound, I thank you, CP because without you I wouldn’t be me! I am who I am because of you. Would I change me? No! Only what others see. My platform and purpose is you. I want others to know you like I do. Knowledge, acceptance and understanding. We’re going to change the world, this CP and me. We want to hear your story. Become a Mighty contributor here . Photo by contributor.

Richelle Heath

The Warrior Who Defends Me in My Life With Cerebral Palsy

I am 41 years old and I have moderate spastic diplegia cerebral palsy. Today, I want to raise awareness for all disabilities. I believe that awareness of all disabilities needs to be brought to today’s society. Let’s talk! My story begins in 1976 as an adopted child whose parents were unfamiliar with my diagnosis of CP at 11 months old.  Think about hearing the words, “Your daughter will never walk and will most likely be ‘confined to a wheelchair’ her entire life.” That was a harsh reality for my parents.  Sadly, there were family members who told my parents to give me back to the adoption agency and get a “normal” child. My parents couldn’t possibly have been be prepared for the struggles that lay ahead. There were multiple surgeries, countless physical and occupational therapy sessions, and constant doctor appointments. Additionally, there were the costly schools and equipment I needed to maneuver through my challenges. I distinctly remember those years of tears and being pulled in a red wagon in the halls of the most prestigious children’s hospitals because I couldn’t walk. I definitely know my parents weren’t expecting this, but they persevered with love, compassion and determination! Through their advocacy, they did everything they could to ensure that I had the best life possible. I am eternally grateful for them and everything they have done for me. Some of my most prominent memories were of my Dad and his ongoing support. He was my warrior! He was always there to encourage me, challenge me, and defend me. I distinctly recall as a child all the cousins playing together. No one ever said, “Oh well, Richelle can’t do that!”  When needed, my dad stepped in and explained that they all needed to adapt so I could participate. I always knew I was different, but I don’t remember being left out of any activities because my dad, my warrior, ensured I was always included. Inclusion can be rough and often seen as an insurmountable challenge. Activities, such a birthday parties and going to the park, can be stressful for the parents of a child with a disability. As children, we often aren’t aware of how much our parents protect us and make decisions on our behalf. It isn’t until we are adults that we can fully appreciate their sacrifices and selflessness. As a preteen to a young adult I was bullied, ridiculed and shunned.  It hurt and made me realize my differences in a more grown-up way. I managed to work through it all because I had my trusted warrior by my side. I also feel that my “movie star” smile helped me through some of those rough moments. I truly believe every experience shaped me into the person I am today. Am I different? Yes, and I embrace my differences. I turned my fear into a self-motivation tool for success. Do people judge me? Every day. Although it’s none of my business what others think of me. I live my truth. I am a daughter, a friend, an advocate, and even a warrior myself because that’s who my dad taught me to be. The words “Never give up,” “Keep fighting,” and “You’ll thank me when you’re older” continue to inspire me each day. Truthfully, all this time he was my warrior, and I was his. We are a fearless, strong, and determined team. Now is the time to embrace who we are and work as a united front. Together we are stronger. We are all warriors. We want to hear your story. Become a Mighty contributor here . Photo by contributor.

Richelle Heath

My Legs Don't Define My Legacy

My name is Richelle Heath. I am 41 and I have spastic diplegia cerebral palsy.My journey began in 1976 as an adopted child whose parents knew nothing about cerebral palsy. They were told by a fellow church member I may have CP because my legs weren’t moving in accordance with typical childhood developmental milestones. After guidance and referrals, I had my first surgery at 2 and my last at 16 years old. My parents afforded me every opportunity so I had the best chance of walking independently, driving a car, graduating college and working in corporate America. I am proud to say I have accomplished each and every one of those goals. My dream was to be completely independent. The kind of independence that is often taken for granted. At age 37, I began using Facebook to see if I could find other people with cerebral palsy facing the same daily struggles as I do. I just knew that somewhere out there, others were dealing with similar challenges. I also felt I couldn’t possibly be traveling this journey alone, one wobbly footstep at a time. I found four FB pages and that is how I met Heaven Ramsey. I entered and won a writing contest that afforded me the opportunity of an incredible friendship. This led me to help admin and help create her cerebral palsy awareness page, “A Stairway to the Stars, Heaven’s Journey with CP.” We have had four magical and incredibly wonderful years of education, avocation and inspiration together. Our collective journey and our friendship inspire us. Everyone we have met has taught us important lessons. The most important lessons we have learned are to never give up, that we matter and our stories matter! Our footsteps in our journeys leave a footprint for those who will follow behind us. We are walking this journey one step at a time. Together we all create the path for greatness. The CP community is 17 million strong in our quest for acceptance. This common childhood disability is not as publicized as others are. Another concern is that as children “age out” of the system, they are left as adults to find their own way, their own help, their own insight, their own education and to do their own advocating. Truly, we are our own best advocates! We are stronger together because our knowledge empowers us as a community. That’s how the #CPDreamTeam began. It was a vision for a t-shirt hashtag to let everyone know they are not alone. Our shirts hold the names of 250 Cerebral Palsy Warriors on the back of each one (we are in the process of number four now) in celebration of National Cerebral Palsy Awareness Day and World CP Day every year. Just a shirt? Absolutely not! It’s a representation of the family and friendships we have built to remind us we are all in this together, and we are stronger because we have each other. My legs don’t define my legacy! Yes, my legs are spastic and sometimes uncooperative. That is my CP. I have CP, it does not have me. Part of my legacy is the gift of my legs because they have carried me a million miles. Miles of blood, sweat and tears, but without them I would not be me — steadfast, strong and true. The other part of my legacy is the gift of friendship. The many friends I have gained during this journey have opened my eyes to acceptance and understanding of other people. Cerebral palsy is a part of me, but it does not define me. I hope to create an awareness of this disability through my successes and struggles. With my voice and experiences, I hope to leave a legacy of CP awareness and increase services for people of all ages. Learn more at CP Dream Team. We want to hear your story. Become a Mighty contributor here.