The One Word I'd Rather Not Be Called as a Person With Cerebral Palsy

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When you’re disabled, the first thing you may notice each day is that you’re “different.” You may recognize it when someone else puts your clothes on and does tasks like taking you to the bathroom and brushing your teeth. However, you may also recognize that if you bring a positive attitude to society, people respect you and even revere you because they believe you have overcome so much. Although this is appreciated, the term “inspiration” can be overwhelming.

Why should citizens with disabilities get an overabundance of compliments for having a strong desire to achieve the American Dream? It seems that when a person with a disability achieves any modicum of success, it is viewed as an “inspiration.” “He got a job, he’s an inspiration.” “He moved out, he’s an inspiration.” Instead of being an inspiration because he made a big impact on society, he gets viewed as one for achieving goals on a smaller scale.

I always try to emphasize my disability even during the times when I struggle with it. I want people to actually know about my challenges, rather than call me an inspiration because they don’t understand. I know that I have had a strong desire to move into my own home, but I feel as if the state of Illinois has not given me many avenues to pursue this objective. I make too much money to live in government subsidized housing. Because I have a job and work 27 hours, I am viewed as something “special.” I shouldn’t be viewed as special for aspiring, for being driven, for being myself. That’s just who I am.

I feel the word “inspiration” gives able-bodied people a misrepresentation of the joy we truly have in our lives.  Sometimes I think it’s because they automatically believe our lives are worse. They say things like, “I don’t know how you do it, living with your situation,” or “How have you overcome so much, living with your disability?” I didn’t overcome anything; I live with my disability and I constantly want to make my life with disability better.

It gets frustrating when you know your purpose, but people keep feeding you sentences like “You’re an inspiration” because they can’t rationalize disability being something beautiful and empowering. Rather than asking questions and trying to understand, they use it to change the topic. However, differences make the world go ‘round, not similarities!

In closing, please don’t call me an inspiration. Just call me Justin Herbst!

Justin Herbst - young man with cerebral palsy

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Girl With Cerebral Palsy Fights for Disability Representation in the Media

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Emily Prior noticed something missing in the catalogs she owned.

“Why aren’t there children like me in these?” she asked her mom last July. Jen Prior didn’t quite know how to answer the question.

“[It] was hard to answer truthfully, as realistically, society doesn’t see disability as beautiful,” Prior told The Mighty in an email. “While I certainly don’t leave it to the media alone to shape my daughters own thoughts, self-esteem and ideas about her body image, what hope [does she have to form] a positive one when she never gets to see people like her being represented?”

So the duo did their own photo shoot with fashion and event photographer Stefan Gosatti — and the response to the portraits has quickly thrown Emily into the modeling world.

emily in pink dress with crutches
Photo by Stefan Gosatti

Since her photo shoot made headlines, the 8-year-old from Perth, Australia, has racked up an impressive resume: she’s an ADInclusion Ambassador at Starting With Julius, pushing for disability representation in the mainstream media. She’s been involved with four major advertising campaigns in the last six months for Rock Your Baby, Alex & Ant, BettsKids Shoes and Ability Centre.

“They choose Emily not for the ‘pat on the back’ or the ‘reward’ for being diverse and ‘including’ a child with disability,” Prior said. “They do it because they totally understand the importance of including all children, of celebrating each child’s uniqueness and their own beauty.”

emily wearing pride socks
Emily wearing Pride socks.
people standing in line, emily on the left
Photo via Instagram – @littlemissem
emily holding up magazine with her on it
Photo via Instagram – @littlemissem_
emily in black dress holding crutches
Photo by Tamara Crisp

Emily hopes to continue her personal modeling career but also ensure kids with all different kinds of disabilities start getting cast in more and bigger brands.

“The more we talk and see disability, the easier it is for acceptance and tolerance of the community and society we live in,” her mother said.

emily in bettskids ad, in ballerina outfit

You can follow Emily on Twitter, Instagram and Facebook.

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To the Woman at Target Whose Daughter Was Curious About My Cerebral Palsy

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I saw you in the Tupperware aisle and couldn’t stop smiling at your daughter sitting in the shopping cart. Her hair was pulled back into braids, and I smiled as her braids twirled from side to side as she looked around, taking in the wonder of the world around her. You were looking at lunch boxes, likely planning out your meals for the week and hoping your child did not place another Frozen-themed item into your cart. But your daughter kept sneaking glances at me, and I smiled at her, taking note of the curiosity in her eyes.

Your daughter kept looking at me, and I remained patient, waiting for her question. She began to speak, but I didn’t hear what she said.

“What?” I asked her.

“Nothing,” you said, hushing her.

As you hurriedly walked away, your daughter’s eyes drifted back my direction, but I didn’t call after you…even though I wanted to. I didn’t have the chance to tell you that this kind of situation has happened more times than I can count, and that I am not embarrassed or hurt.

Instead, I wish you would have allowed your daughter to ask me about my disability. I wish you would have thought about the importance of teaching your child that differences are OK, and that just because I have a disability doesn’t mean she should be afraid to approach me and talk to me. What most people don’t realize is that I love to talk about my cerebral palsy. I love to answer questions to allow children and adults to better understand what my life is like. I love to have the opportunity to explain my perspective on the world.

I am not the last person your daughter will meet who is “different.” Though you may have felt uncomfortable because your daughter tried to initiate a conversation with me, don’t be. You are her role model. If you feel uncomfortable around me or instinctively want to walk the other direction, so will she. And don’t be worried about saying the wrong thing or that she might. The only wrong thing is not saying anything at all.

Allow your daughter to talk with me and ask me anything under the sun. Allow her to learn that differences are unique and something to be proud of. Give her this moment, even though you may have so many other things on your mind. I’ll be glad to talk with her for as long as she wants. I’ll tell her that this was the way that I was born, but that I would not change it for anything. I’ll tell her that I do things differently, but that’s OK. I’ll tell her “normal” is just a setting on a washing machine.

Allow her curiosity to bloom and her questions to flow freely, because guess what? She’s learning the most important lesson of all: inclusion.

Amelia Coonrod - young woman with curly brown hair, smiling.

Follow this journey on Trailblazing.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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How I'm Speaking Out About Bullying as a High School Student With Cerebral Palsy

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I have cerebral palsy (CP). It is no secret. You can tell by the way I walk that I have a disability. I have accepted it. I think that my cerebral palsy is a true blessing. I know that may sound strange, but it’s true. But not everyone else has accepted my CP. I know that because I have been bullied. Kids at school have always teased me about the way I walk, talk, eat and anything else they could think of to tear me down. If they understood cerebral palsy, they might not have teased me. They might have accepted that I was “different” and moved on.

When I was given the opportunity to do a Star Event with my club, the Family, Career, Community Leaders of America (FCCLA), I chose bullying as my project. However, I didn’t do it simply because I have been bullied. I had started at a new school and I saw a girl being bullied. I did not step in. I didn’t do anything because I was too scared. It’s one of those moments in the back of your mind where you think you know what you are going to do, but then when it actually happens, you chicken out.

I didn’t know what went into creating a Star Event at first. All I knew was that it might give me an opportunity to make a change — something I have been thirsty to do all my life. I started by setting up a Facebook page called Desiree’s Anti Bullying Project. I then did a service project at a home for troubled teens. I feel that my service project went really well, and I loved it. I also feel like I conquered a stereotype. While planning my service project, I was told by different people that I’d better be careful while at the center. I was told that the children there were very dangerous. By following through, I showed people that the residents at the center are not bad. They just made a bad choice. I had a chance to truly connect with them while I taught them about the effects of bullying. During this project, I did and continue to do many other things, including making a YouTube video called “Overcomer — My Bullying Story.”

I competed at regionals where I gave a speech and displayed my 35-page portfolio. I received a gold medal and was sent to state. I also received a gold medal at state, and I am going to nationals in California where I will be representing Missouri in the category of advocacy.

During this project, I have had so much support from my community. I have so many people who are helping me fundraise for my trip to nationals, and not because they feel sorry for me. They do not look at me as a charity case. They look at me like people who have been greatly affected by bullying themselves.

This project has taught me so much. If you believe in something, nothing should stop you from standing up for it. This is so much more than a school project. This is making a difference and making the world a better place. Making a change starts with one person, and that one person can be you. The sky is your only limit. This project has restored my faith that I have cerebral palsy, but cerebral palsy does not have me. I can do anything I set my mind to, and so can you.

Desiree Ferguson - teen girl standing outside, holding a small medal
Desiree with her medal.

Follow this journey at Desiree’s Anti Bullying Project.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To Children With Cerebral Palsy Who Feel Like They'll Never Be Accepted

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If I told you my life with cerebral palsy has been easy, that would be a lie. My body constantly aches, I struggle fitting orthotics in my shoes and have all kinds of doctors’ appointments and shots. If I told you growing up making friends was easy, that would be a lie, too. No one wanted to be the friend of the “disabled” girl, the one who looked a little different, couldn’t run very well and fell occasionally.

But I’m here to say to that little girl or boy — who feels alone, who feels different, who feels like no one understands, who feels like they’ll never be accepted by others — that it does get better. It just takes time and the right people.

Abigail McKee and her friends
Abigail (top) with her friends.

It’s taken me 22 years, but I can honestly say I have found my true friends. This especially came to light the other day on my birthday. They take on a different meaning to me since I have cerebral palsy. Birthdays mean that I survived being born at 3 pounds, 2 ounces when the odds were against me. I thrived in therapy and learned how to lead a “normal” life, and every year it just shows I made it to this present point in my life.

On this particular birthday, I had absolutely nothing planned. I just thought it’d be like a regular day with people saying, “Happy birthday,” occasionally. Let’s just say I was completely wrong in my assumption!

I was shown how loved I truly am. I woke up to see balloons in my hallway and streamers and banners on my door. Then more friends surprised me with donuts and coffee in bed. After that, I got whisked away by another friend to a birthday lunch and a trip to the mall. I came back from the mall with a homemade cake and a nice note waiting at my door step.

At this point, I was already overwhelmed by the love I had received all day, but little did I know it wasn’t over. The last adventure of the night was dinner at one of my favorite restaurants. This was no ordinary dinner by any means; my friend had planned a surprise party! I was overwhelmed with so much love and joy that I burst into tears. Never in my life have I had people do something so special for me. People celebrated me for who I am.

The moral of the story is don’t be ashamed of having a disability. Embrace it. People will see your big heart and zest for life. Your true friends will come along in time; just be patient. If people don’t want to take the time to get to know you, they’re the ones missing out, not you. And when you get those friends who accept you and love you unconditionally for who you are, be thankful and hang onto them as tight as you can.

The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Visiting Disneyland With Our Daughter With Cerebral Palsy

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We just survived a day at Disneyland with my 9-year-old daughter who has cerebral palsy, my 12-year-old daughter and her friend.

This day required extra thought and planning. We circled around the blue placard parking lot to find the closest spot, then navigated the tram ramps to get to the main gate. At every ride, had to ask where the wheelchair entrance is located, because there were no signs. We got frustrated at waiting in line for the accessible restrooms — all the while my daughter was complaining that she didn’t have to go potty — only to see mothers and children without apparent disabilities exiting the stalls. Later we waited over 30 minutes in line for a ride, only to have to run back to the bathroom again.

These last things sound like moments many parents might face at Disneyland with any toddler. But my daughter is 9 and a half and stubborn like her mama! She has limited mobility, which means that the transfer in and out of her wheelchair adds a good five minutes to getting on and off rides. She doesn’t want to be treated like a baby. We have learned to be flexible and patient.

Sometimes it’s hard to be patient with our older daughter. While I was three steps ahead plotting how I would lift my younger daughter into the Rockets first, cognizant of the people behind me waiting to board, my older daughter wanted to go in first. She likes to get situated and ready quickly, so no eyes are lingering on her. For her, it probably seems like all eyes are constantly on our family, since we’re often holding up the line — and isn’t 12 such an awkward age anyway?

The Disneyland staff members gracefully managed my family. It hit me as we left the Haunted Mansion. We were never rushed, never made to feel like we were holding up the line or that maybe we should have let our “capable” group members ride while the other one waited to the side. I got a little choked up as I stopped to thank the last employee for the considerate care with which each of the three people along that ride handled my family.

In my experience, parents of children with special needs pray for the support of angels like this along our journey. It makes no difference if we are challenged with mobility issues or non-visible disabilities like autism or mental illness. We all often feel at a loss, self-conscious and overwhelmed. We are still learning to be flexible. That’s hard when people, including our own kids, set expectations. Not everyone would have the patience to go with the flow this way. Sometimes this patience is difficult for us too, but we cannot escape the situation, we just have to learn to deal.

But at the end of the day, going through these “normal” rites of passage like Disneyland is well worth the joy that it brings to our children. None of the extra effort for me mattered when I saw the joy in my daughter’s face when she finally wasn’t too scared to go through the Haunted Mansion, and when she white-knuckled through the Matterhorn roller coaster for the first time. What’s better than overcoming your fears and having the time of your life at the happiest place on earth?

The Cota family -- mother, father, two daughters and their friend -- at Disneyland
The Cota family at Disneyland.

Luckily we chose a great friend to go with us — a friend who was ready to push the wheelchair at any time. She was an angel who brought her laughter and good spirits, and helped to remind my family what it’s like to have fun and not be so bogged down by the intricacies of our situation. I’d like to think that the experience served her well too, helping her see what it’s like on this side of the spectrum. Although she was raised to be kind to all people, she might now have a better appreciation for the challenges that people with disabilities face every day. She might go out into the world and be a little more kind at school or at the mall or in the library when she passes by another disabled person who is just trying to make it through the day.

People with disabilities can give society the necessary gift of love, laughter and perspective. By accepting and including people in activities and interactions, we all grow in compassion exponentially.

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