Cerebral Palsy

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    Mollie Miller

    When I Call Myself Disabled

    When I call myself disabled, sometimes it’s an explanation for reality or a reason for routine. It’s a guttural release of anger, annoyance, irritation and anxieties. It’s a badass badge honoring strength and determination. Other times it’s a scarlet letter so big and red I can’t control its flare. When I call myself disabled, it’s a flinch, a stare, a questioning or inquisitive glare. Not any more from a passerby’s curious eye than from mine in my own mirror, counting my scars, marks and bruises, and wondering, “Where did this new one on my knee come from?” When I call myself disabled, it’s constant tugging and pulling at my clothes, lamenting the fact that fighting with fabric is sometimes a losing battle; cotton, rayon, polyester and denim don’t always want to sit pretty on my sitting crooked body. It’s why I bought the Get Naked sign hanging in my apartment. It’s adjusting my legs, my spine and my neck, their muscles and bones lit up in fiery pain, so I’m sitting up as straight and tall as I can. It’s wishing to blend in seamlessly with the crowd while hoping to be seen. When I call myself disabled, it’s acknowledging that life with autonomy, choices, experiences and opportunities isn’t an impossible dream, but it is a logistical nightmare. It’s a crash course in creative, out-of-the box thinking. It’s knowing adaptation and problem solving is a necessary, sometimes minute-by-minute part of this life. When I call myself disabled, it’s a collection of experiences continuously tipping the scales between grief and gratitude. It’s grieving opportunities lost, access denied, relationships ended and abilities stolen. But it’s also gaining a healing gratitude for my heart and my eyes and my mind and my voice — that allows me to see the world through an ultra-compassionate lens, recognizing and renouncing injustices or inequalities. It increases my capacity for bonds and interconnections, forever tied through understanding and awareness. When I call myself disabled, it is a fact; I can’t argue with reality. Instead I must surrender to my physical body; no matter if it’s slow, sluggish, riddled with pain and a serious fall risk, it is mine. When I call myself disabled, it is a prideful truth, a deep satisfaction in all I have accomplished and achieved. It is a fear for my future but a celebration of my present. When I call myself disabled, it is a battle cry to the army of disability warriors who surround me. It is a march in solidarity with the millions of people who know the injustice, who feel the inequality and who persevere through the struggle. When I call myself disabled, it is knowing I am more than a label stuck on by opinion; I am me for so many reasons and there is no one else I’d rather be.

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    Karen Utley

    The Only ‘Definition’ That Matters When Your Child Has a Disability

    We spend much of our lives defining ourselves. We are mothers, we are professionals, we are wives, we are bold, we are timid, we are… the list goes on and on. Not many parents expect to have a child with a disability, yet many of us end up in this category. When I was pregnant with my second child, I had hopes and dreams for her. Like all parents, I wanted her to discover her talents, serve society in a positive manner, and lead a fulfilling life. My story of becoming a parent to a child with a disability is not much different than other stories. My daughter was born on October 17, 2006, and she appeared to be perfectly healthy. However, when she was about 10 weeks old, I observed some twitching and jerking that did not seem normal. I called the doctor, even though it was Christmas Eve. He returned my call, assuring me these movements were normal and due to her developing nervous system. Unfortunately, over time these symptoms increased in intensity and frequency, which led us to our first ER visit. I breathed a sigh of relief when all the tests were normal, and the doctors assured me Samantha was meeting milestones and developing appropriately. However, this quickly changed as the seizures increased, wreaking havoc on my precious girl. The doctors ran countless tests and did not find any answers. Suddenly, I was redefined. I became a researcher scouring the world wide web for any information that would help my child. Not only was I a researcher, but I was also now an advocate. I knew the doctors cared, but this was not their child. Instinctively, I realized I knew her best, and would recognize her symptoms in a way doctors (in their short) visits never could. About one year after the first ER visit, I found a test that fit my daughter’s symptoms and asked the doctor to order it. In 2008, genetic testing was very slow, but five months later, on July 2, 2008, they diagnosed my daughter with a mutation on her CDKL5 gene and believed it to be the cause of her condition. Once again, I was redefined. I was now part of the rare disease community. Immediately, as a parent, I sought a definition for my daughter. I asked, “What does this mean for her? What will she be able to do? Will she walk or talk?” Fortunately, I had a brilliant epileptologist who gave me the best advice by saying, “Do not let anyone tell you what your daughter will or will not do. Learn to accept her true limitations, but the only way you can learn what her true limitations are is by encouraging and pushing her.” He wisely chose not to define my daughter. Instead, he encouraged me to allow her to define herself. Now, being defined as a CDKL5 disorder parent, I started looking for disease specific answers. In my search I found a Yahoo email group for this diagnosis. There were only a handful of families world-wide. Even though we were few in number, we had a common goal of wanting better for our children. Six other moms and I started an organization, the International Foundation for CDKL5 Research. Through this effort, we created a community—a family. Because of this, no one receiving this diagnosis would ever feel alone again. As a team, we redefined the world for families affected by CDKL5 disorders. Samantha is now almost 12 years old, and I have spent those years pushing her limits, and accepting the limitations when they are obvious. I have loved her through every moment, every seizure, every complication, and every challenge. Through these life moments, I have learned the only definition that matters is the love that defines our relationship. It is unconditional and unending. This love has led me on a journey that is challenging yet fulfilling. Samantha has taught me to look at life through a different lens and to never take things for granted. Her willpower gives me encouragement and determination to keep pushing the boundaries—the boundaries of science, education, government, and most of all the boundaries of small minds. By pushing these boundaries, we will redefine society. This journey taught my family how fragile life can be, so we choose to celebrate every accomplishment and try to live life in the moment. As parents, we can choose to allow these challenges to define us, or we can choose paths that allow us to redefine the situations in which we find ourselves. I hope we continue to choose the latter.

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    Larissa Martin

    Please Don't Say This to Your Disabled Loved One's Friends

    I am a person with a disability. I have cerebral palsy, am an amputee, and a wheelchair user. In my life, I have had consistency issues — not with creating friendships, but keeping them. Growing up, I would always get close to someone, and we would be friends for a few years but more often than not, our friendships would end without explanation. This happened a lot in high school minus a few exceptions. As an adult now, I am lucky enough to have what I call my “core four.” These are my best friends I have had for some time. Still to this day, after we’ve done something fun together, I find myself repeatedly thanking my friends for spending the time with me or for the fun we had. I used to say it a lot more often than I do now, but I still do it more than average. I have noticed that my mom will always thank my friends for coming over or spending time with me. She does this every time, whether it’s simply a day trip or a weekend away. I can understand why she does it; seeing me constantly have plans I made with friends fall through over the years was difficult, I’m sure. However, it puts my friends in an awkward situation. In their eyes, they are just doing what any friend would do, not something that warrants excessive gratitude. I believe I am good at expressing my appreciation already and they understand how much their friendship means to me. Another reason this bothers me so much is that I can tell my mom only does this specifically with my friends. She does not thank the friends of my siblings who are not disabled. She seems to think they feel bad for me, when in reality I know they are hanging out with me because of the person I am, not because I am disabled. Both disabled and able-bodied people have friendships. I believe parents, caretakers, and society as a whole need to stop glorifying these friendships and treat them just like any other friendship — because that is what they are. I think when we change our perspective and consider how much unnecessary attention we are putting on these kinds of friendships, we can change our outlook for the better. Friendships are friendships and no matter how they come to be or who they’re between, they all deserve the same respect. If you are an able-bodied person, how would it make you feel if your parents thanked your friends for spending time with you?

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