Girl jumping rope.

Please Don't Single Me Out Because of My Cerebral Palsy


It’s true that I have a disability, but I don’t think of cerebral palsy
that way. The word “disability” means “a physical or mental condition
that limits your abilities.”  I don’t think cerebral palsy limits my abilities.

Even though it is polite not to stare, I don’t want anyone to avoid looking at me completely. I wear braces, also called ankle foot orthotics (AFOs), and it would really be nice for someone to look me in the eyes rather than at my AFOs. Or you could comment and say, “Those are really cool.”

I receive insincere comments from other kids because of cerebral palsy; that helps me to be sensitive to other people’s feelings. But that doesn’t mean I like the comments. So many kids say I run slowly, but I wish they would focus on any of my other traits or interests rather than my physical success.

If you’re my friend, I’d like to talk with you about something other than cerebral palsy. If you said, “Caroline, I’m interested in learning about cerebral palsy, can you tell me a bit about it?” then sure, I’d tell you some things. But people don’t speak carefully and say things like, “Why do you walk different?” So instead of being able to educate someone, I feel I have to defend myself, as if walking differently is a bad thing.

I don’t like to be singled out. If I want to play jump rope, for example, I feel like an alien if you say, “Oh go slow so she doesn’t trip.” I know it can be a kind gesture, but when someone changes the game because of me, I feel like a one-eyed dragon. In other words, I feel different from everyone else in every way.

These are the things I wish people knew about how I feel about cerebral palsy.

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Thinkstock image by Ingram Publishing.

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Rachelle.

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.

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Girl and teacher using AAC tablet in classroom.

Why People Who Use AAC Devices Can Make Great Speech Pathologists


“Life is scary, overwhelming, and frustrating. But how you handle it says a lot about you.”-Lydia D.

You might be asking yourself who is Lydia D.? To answer your question, Lydia Dawley is awesome and going to make a difference in this world. Just you wait…

Yes, I’m Lydia. But really, I’m awesome!

I’m a student at the University of Wisconsin in Whitewater — let’s go Warhawks! I’m going into Communication Sciences and Disorders to be a Speech Pathologist (SLP). I really hope to work with children with Alternative Augmentative Communication Devices (AAC). I think it’s the coolest way to talk because I’m considered “nonverbal.”

Studying to be a speech pathologist and being “nonverbal” can really raise some eyebrows. Talk about ironic!

I have mixed cerebral palsy, so I “can’t” walk and talk, but I can walk with help from someone, and I can talk, but only my family and close friends understand me. I don’t think of myself as disabled; I just think living with cerebral palsy is an unique way to live! That’s why I want to be a SLP. As far as I know there hasn’t been a speech pathologist who uses a communication device ever. You might be asking yourself, “Don’t you need to speak to be a speech path?” Yes, that might be true now. But I’m gonna change that up!

Here’s why I believe it’s important for people with AAC devices to be speech pathologists:

1. We are secretly geniuses, but we may not realize what kind of gift we have. People who are “nonverbal” have a gift we might not think is a gift. We have a unique way of speaking. We have figured out how to talk for pretty much all of our lives: from typing on our communication devices to writing letters in the air to spell out words. We can use our gift to help kids with communication disorders figure out a way to get their voices out!

2. We can relate to the clients. People who use AAC devices know what‘s up. Trust me, I had some educators and therapists who thought I didn’t know anything. They would say I need to only use my communication device and nothing else. No… wrong! People who speak with AAC devices need to use everything around them, because when they have to depend on just one thing, they will have no way to talk if the device runs out of battery or breaks. Kids with communication disorders and AAC devices need speech pathologists like them to let them know they are heard and no matter what, they’re going to have a voice.

3. We can be so stubborn! Just ask my parents. When I was only 2 years old, I used a little blue walker and I had no communication device. Well, I had to use my little brain to let my parents know that I had something to say. So I rammed my walker into my parents’ and brother’s legs and up against the wall. Ha ha sorry Ma, Dad, and Zach. But when I become a speech pathologist, I’ll encourage my clients to be stubborn. I’m not saying they have to ram people into walls. I’m saying don’t get discouraged if someone doesn’t understand, and don’t give up on trying to make them understand. It may take 100 tries to say one word, but it’s worth it!

4. We share similar experiences. We have been there! To have no voice can be horrible; it’s frustrating when someone doesn’t understand what you’re saying. You may want to cry and scream at the top of your lungs, but you don’t want to make the person feel bad. So you suck it in. With our experiences, we often know what works and what doesn’t, but we’re also open to trying everything because it might work for us, but it might not work for them.

5. We tend to have creative minds! Through our experiences, we can come up with some unique ideas for how to have a conversation. I came up with my own language for which I don’t have to use my communication device. I had speech therapy when I was little (that’s how I fell in love with the field) and I practiced saying sounds and words. When I talk to my parents and friends, I spell out words by pronouncing letters, and I came up with a way to “say” a letter by writing it in the air. That’s another reason why I want to be a SLP; I want to show people they may need to think outside the box a lot to be able to get their point out!

6. We can give hope. Speech pathologists can diagnose communication disorders. Odd as it may sound, I’m most excited to diagnose kids. I don’t know why, but to tell parents that their child has autism or cerebral palsy sounds like I’m giving them a gift. I know it might sound scary when someone tells you that your child has a disorder. My parents felt the same way, but they raised me up as strong and independent.

7. We can show our future clients they can do anything! I want to encourage not only my future clients, but their parents to think of themselves as people who are going to do some things differently, but they can do anything!

8. We can be “mind readers.” Really, it’s a super power. In high school, I was a mentor with the school’s speech pathologist to a boy who was in high school and a girl who was in elementary school. While I was with the boy, he was trying to tell the SLP something, but she was not getting what he wanted. On the second time he said it, I smiled and asked him, “Do you want to play memory?” In the widest smile and the brightest eyes, he yelled, “Yes!” That’s when I knew I wanted to be a speech pathologist — I need to help kids be understood. It feels beyond awesome to get that bright-eyed, gigantic smile from your client!

9. We’ve had to learn patience. I don’t know how many times I had to wait for my parents to do something for me. Sorry Ma and Dad, but you are kind of slow! When speaking with a communication device, we have a delay with composing our response. And yes, there are speech therapists who don’t wait for their client to write on their AAC device. I don’t understand why! I have been there when someone doesn’t wait for me to talk and I don’t want other people to feel that way. So when I become a SLP and see clients, I will be patient with them because I know they have something in that big wonderful brain waiting to get out!

10. We’ll love your kids as if they were our own. This is the reason I’m most excited about being a speech pathologist. I love kids! They are curious and fun. I want the best for my future clients, and I can’t wait to help them find their voice and see what they are going to do in this world!

I know people who use AAC devices may meet some people who will say they can’t be speech pathologists, because I have. But just smile and say thank you for your input. Don’t let those people get your goat! Go and get it. They don’t know you — you know yourself. You know what you can and can’t do. Do what you want, because I believe in you!

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Thinkstock photo by Wavebreak Media.

Artistic drawing of a woman.

How I Cope With Chronic Pain and Aging With Cerebral Palsy


I am 49 years old and have lived with spastic diplegic cerebral palsy since birth. As a child, I remember the surgeries, casts, intensive physiotherapy and other interventions to make sure I “achieved my highest potential.” It was hard, but it was something to strive for and it sounded so good and so right at the time.

Then I turned 18 and the bottom fell out of my world. All of the access I had to supportive treatments was gone and I was told to “go live my life!” So, I did – full of hope and a long-time dream of becoming a nurse, until chronic pain set in to both knees at age 22 and my dream of being a nurse lay shattered in a million pieces at my feet.

I had a hard time adjusting to this “new normal” as doctors told me I would “just have to learn to live with the pain.” Then at 29, diagnosed with osteoarthritis in those same knees, I began to walk with a cane for the first time. My pride took a hit and adjusting to this “new normal” was also a struggle, but four years later when my standing balance suddenly deteriorated severely, I began using a  wheeled walker. First outside only, and then all the time over a very short span of time. It was a struggle again to adjust, but a bit easier this time. Then came the manual wheelchair at age 35 (only for bad days and long distances) but it felt like another blow to my dwindling pride. Fatigue was now my constant companion and I struggled to go to work each day. I pushed myself hard, ignoring the fatigue and the fact I was running on empty most of the time. I was determined to keep working!

Fast forward to today: I have been off of work on disability benefits now for 5 years. The osteoarthritis has spread to my hips, back, neck and hands. My spasticity has increased dramatically and I now live at a constant 8-9/10 pain level 24/7, 365 days per year. I have just acquired a power wheelchair for use outside so I can leave my home independently to get fresh air, go for coffee etc. I continue to adjust again and again to my “new normal.” The doctors tell me CP is not “progressive” because the initial brain damage or lesion does not get worse. So, it’s not going to kill me… OK, but what the heck is happening to me?

I have done some research and discovered a term: “post-impairment syndrome” that is being used to describe the secondary complications adults with CP develop as they age. More research must be done and I am advocating for that in as many ways as possible.

I pray the generations behind me can learn from my experiences and do things to minimize the effects as they age. I pray for better supports and an acknowledgement of our suffering with concrete actions, treatments and positive outcomes for the young ones entering adulthood as well as for us older pioneers. I pray for hope to fan into flame, for right now it is but a flickering ember.

Until then, I embrace each day with my own personal motto: Onwards… regardless!

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Riding a horse.

I'm a Kid With Cerebral Palsy and This Is How I Feel


I am 9 years old and I have a blog. I write about many things on my blog, but the main thing is about some of the struggles I face with tight legs. I have CP, cerebral palsy. It’s true that it is not very severe, but I still struggle with it. I can talk and walk and move my arms, but I do have CP.

I don’t like talking to other kids about my legs, but I do get asked about them very often. Often, I feel alone. I feel like I’m the only kid with tight legs, but I know the truth – I’m not.

I go to physical therapy and wear leg braces and my legs are often sore. I usually focus on indoor activities, like reading and writing to keep my mind away from my struggles. I do participate in P.E. And when my friends ask me to run, I usually do it unless my legs are so tight that they are pulling.

I enjoy reading articles by kids or grown-ups who have cerebral palsy. I am the only one in my family who has CP, but my parents make sure I know they wouldn’t trade me for a kid without CP.

My family lets me vent about my legs whenever I feel the need. Whenever I cry about it, they hug me and kiss me and just let me cry. They get sad sometimes, too. Whenever that happens, I feel so lucky I have them to comfort me and help me through the challenges I face.

I’ll be the first one to admit it’s hard. It’s perfectly OK to cry about it for a little while. But then you gotta be strong and brave. Just get back up and keep trying. You have to try to get over that mountain towering above you. Try, and then you can do anything you want to do.

Don’t let anyone tell you that if you cry it means you’re a baby and not tough. Because you are still tough and brave and strong. The roller coaster of life goes up and down. So try, always try.

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What Pride Means to Me as a Queer Woman With a Disability


When I came out as a queer woman, I adopted a new definition of the word pride. It no longer simply meant an allegiance to a sports team or feeling confident in myself, but instead represented adopting a self-acceptance of my identity and my community. Pride to me means you are proud of your community’s history, your movement, and yourself for being a part of it. Pride is loving yourself and advocating for yourself. Having pride requires a journey of immense self-acceptance and growth. During queer events, I can feel the pride swell in my heart in a way that is hard to put into words – it makes me feel whole.

June is National LGBTQ Pride Month, commemorating the Stonewall Riots that occurred in New York City on June 28, 1969. On this night, some brave transgender women grew tired of being kicked out of public spaces for simply being who they are – for presenting their gender in nonbinary ways and for dancing with the same gender – so they fought back. They resisted the police, and they resisted the constricting messages society had taught them. One year later, the LGBTQ community in New York City commemorated the riots with a march – and Pride season was born.

Pride is rooted in these activists who resisted and owned their identities with no shame. It is tied to an inherent need to push our society to be more accepting and more kind. Pride is rooted in the mourning that came from our community dying of AIDS in the 1980s and onward, and the current moment as we figure out how to move forward in an ever-shifting political climate.

As I became more confident in my pride as a queer woman, I yearned to feel the same way about my physical disability. It saddens me to say I do not feel this type of pride about my cerebral palsy. I do not feel the same level of self-acceptance, of camaraderie, of being ready to flaunt my disabled body and scream that I have CP from the rooftops, as I do with my queer identity. I do not feel proud of what my disability does to me – and it does not make me feel whole. Instead, my disability makes me feel weak and less than in many ways.

It was not until I felt the pride that comes with my queer identity that I understood how much my pride in my disability was lacking. Every pride month, I am reminded of the journey I took in self-acceptance and personal growth that allowed me to learn to love my queer identity and queer community, and to feel pride in it all. I am hoping that time, patience and growth, I can adopt these same feelings towards my disability. I am working towards being proud of my cerebral palsy, but Pride Month also reminds me to accept wherever I am in my journey.

My queer identity has taught me more about acceptance, love and community than anything else in my life. I am continuously striving to apply those lessons to how I view my disability. On this Pride Month, I urge everyone to accept themselves wherever they are on their journeys of self-acceptance. Whether you are at the point of marching in parades or just coming to terms with your identity, celebrate yourself. Celebrate your community, your history and your movement. On this Pride Month, I am pushing myself to adopt this level of pride in all aspects of my identity – including my disability.

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Thinkstock image by Bennian.

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