When Kardashian Kids Posted a Photo of My Daughter With Cerebral Palsy

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fin on instagram One morning I woke up to the Kardashian Kids (the Kardashian family’s children’s clothing line) tagging us on Instagram and reposting a picture of my daughter in one of their dresses. In the photo, she’s standing in her walker. This account has more than a million followers, so this was a big deal to us. I thought, “Wow! This is possibly bringing cerebral palsy awareness to a million people!” I reposted the image and was proud of the platform we were provided with.

As I went to text my sister and cousin, I began to get bombarded with notifications. Mostly supportive, but the ones that stuck out were angry at the negative comments left on her picture.

Negative comments? I was scared to look. I had never had this emotion as a parent yet — fear of judgment. Of course I’ve felt that for myself, but never for my 2-year-old child. I immediately thought, “Oh my goodness, what did I expose her to?” I debated asking them to take it down.

Then, my direct message box began filling up with notes from other special needs mothers. You see, right after we received Fin’s diagnosis, I felt so alone. I believe all parents do. So you can imagine following all of these popular kids shops on Instagram and then one day seeing a child like yours in the feed.  Many of these precious mamas said they were “in tears” that they found someone like them!

Most moms post pictures of their kiddos in cute outfits, going to dance, soccer, swim, what have you. Yet, when your child requires medical assistance, you may have a different thought process behind posting these simple picture. I’ve always felt the need to address this issue. I’ve heard a few people around me say I’m “exploiting” my daughter. It makes me sad because I’m merely a proud parent just trying to bring more awareness for something so my child may feel more accepted. So far, it’s worked. People immediately comment on her, rather than her medical devices. I feel I’ve been able to use our Instagram account to spread the right kind of awareness. I’m so grateful for each shop that reposts one of our images because it brings more awareness and acceptance to children with special needs. I’m grateful for the Kardashian Kids post because I feel it made a mark for the CP community and was an eye-opener for others.

Back to the negative comments for a second. One commented, “forehead fo daysssss.” Others asked, “Why is her head so big?”

The words were cruel. Along with cerebral palsy, she has “macrocephaly,” a medical term for “large head.”

A lot of people sang the Kardashian Kids praises for posting “diversity,” and a lot of strangers came to our defense. People kept asking me what I was going to do. What could I do? I wasn’t about to start one of those pointless internet debates. This is all part of being public and trying to teach people about something. There’s an ugly side to being an advocate. Bottom line, some people are just rude. This was quite the lesson, and I took the beating.

The next day the Kardashian Kids sent me a message: “Hi Christina! I hope you weren’t upset by the ignorant comments on the post. The ignorance in this world never ceases to amaze me. There was so much love and support for little Fin, I hope you have gained a lot of kind, supportive followers. Xo”  You know what, KK? We did, and thank you.

To the rude Kardashian Kids Instagram fans: Thank you for showing us a glimpse of how rude and ugly the Internet world can be. I hope you feel really proud of all the things you wrote. I somehow know you would never have made these comments in person. Attacking a child’s appearance is never OK, regardless of how “harmless” you feel it is. I hope you try to troll the Internet with positivity because then you will actually help out in making a difference. Everyone can be negative. Just try saying nice things and see how good it makes you feel. I promise it will.

Follow this journey on The Waiting Room.

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How Writing About My Cerebral Palsy Gave Me Confidence

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When I returned to Passaic County Community College (PCCC), I didn’t know what I wanted in life. I felt like I was driving a car without a clear destination. Though I returned to college, I felt lost. I lost faith in people, in life and even in myself. All I knew was that I wanted to obtain a college degree.

I found my meaning and purpose when I met Professor Mark Hillringhouse, who helped me to realize I am a writer. He encouraged me and challenged me, first with poems, then with translation exercises. He motivated me to look inside myself and start writing from within.

Juana Ortiz and Mark Hillringhouse
Juana and her mentor, Mark.

Writing about myself helped me to become aware of the wounds I had carried with me all my life. They were not visible, but kept hidden within my unconscious mind and my soul. They were very difficult to heal, because nobody could see them. I wasn’t aware of how much the wounds were affecting me until I wrote about them.

Cerebral Palsy

I learned how to ignore others who laughed.

“Mama, yo no quiere ser una carga”
(“Mama, I do not want to be a burden”)

I would say to myself.

“Papi, yo no quiere ser un extraterrestre.”
(“Daddy, I do not want to be an alien.”)

I never wanted my parents to suffer

Because of me. I wanted love

Not sorrow. My body curves

Like a sea creature.

My legs bend behind me, my mouth

Always opens in the shape of the letter O.

I am a toddler slower than a turtle.

I am a clown the kids on the street always laugh at,

But I could never laugh at myself.

I wanted to keep my poetry secret for a couple of reasons. First, my self-esteem was low. I felt insecure about people and about myself. I had been discouraged by a number of people at different stages of my life, and the effects of their negative criticisms were still within me. Second, going through all those evaluations that mostly highlighted my weaknesses caused me to distrust others, sometimes even Professor Hillringhouse. When he first seemed impressed with my writing, I wasn’t sure if he meant it, or was just trying to make me feel better.

At home, I sat in front of the computer, went back in time, and started typing. All those emotions that I had not revealed came to the surface, and I had the courage to let them all out. I was following my mentor’s instructions by describing a situation and then explaining how I felt about it at that time.

I wrote about my experiences as an immigrant, spending four years without seeing my father, living with cerebral palsy, and lacking formal education. The most painful was to write about my physical appearance and the way I had been teased by other children, excluded from so many things and pitied by strangers. Moving to a new country… attending school for the first time… making friends.

I had never revealed some experiences to anyone until I started creating poems. It was much easier to express certain parts of myself through poetry. This was the moment when writing became a form of therapy to start healing my turmoil from the past, even from the turmoil of writing itself.

I realized the big difference between academic and therapeutic writing. One was about the pressure to follow rules and get good grades. The other was a way to release my feelings, emotions and thoughts. Every time I practiced therapeutic writing, I experienced a sensation of freedom I had never felt before.

Writing about my life has helped me to have a better understanding of who I am as a human being, not as a person with a disability. Through writing, I learned that it is OK
to release my pain and my emotions, because they are part of my life experience. For years, I was afraid of expressing how tough it can be to live with cerebral palsy, but I’m not afraid anymore. Even though living with a disability is still sometimes very difficult, I now have the tools to help me get through the challenges. I can sit in front of the computer or grab a paper and pen to write about my feelings.

I hope many readers can identify with my story, because most of us have some type of wound from the past that we don’t want others to know about. Therefore, I am encouraging everyone to start writing. Write about anything that is bothering you. Write about how you feel. Your subject can be as simple as what annoyed you today at work, or what made you smile when you were walking your dog. In the beginning, you might feel uncomfortable, but after a while, you will most likely start feeling relief. Writing can help you deal with all the pain or frustration that you hold inside and see yourself more clearly.

In my book, “I Made It,” I talk in depth about how therapeutic writing has helped to increase my self-confidence and belief in my ability as a writer, instead of my disability. The book is available at www.juanamortiz.com and on Amazon.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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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When People Say I'm Doing Great 'for Someone With a Disability'

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Austin Wykes - young man in a blue shirt with a view of a lake behind him.
Austin.

Growing up with cerebral palsy, I encountered two distinct perceptions of “disability” from others on occasion. First is that merely existing somehow made me heroic, and second, any effort I make is a great one because I made it. As you might imagine, these perceptions can grow tiresome, because I’m just trying to live my life like anyone else. After a while, the aggressive encouragement is, in a strange way, grinding on the spirit. At times it felt and still can feel disingenuous. Such unearned praise made me feel like there was a lack of “real” expectation for my life, and that participating was considered to be enough.

To be sure, cerebral palsy affects many aspects of my life and has provided many speed-bumps while trying to accomplish various goals. However, the only times I’ve felt “disabled” are when people have gone out of their way to either include or pressure me into activities that I genuinely had little interest in, or indirectly emphasized how disabled I seem to them, because I surpassed their expectations. The latter usually occurs due to a misplaced kindness mixed with ignorance. People say things like, “You’re doing a great job for someone with that disability!” or “How do you do it?” Both examples are mildly insulting, and also, incredibly common. While they’re trying to be encouraging, they’re also pointing out a difference I’m already well aware of, that has no bearing on the task at hand. It doesn’t make me mad, but it is frustrating because I’m just trying to do my thing. Imagine someone mentioning your race or gender while you’re doing something you view as mundane. That’s how it feels to me.

As far as my disability is concerned, I don’t view it as some sort of “active” status. I have a disability, but I’m not existing in disability. I live in the same world as everyone without a disability, and to me my disability is a part of me in much the same way that glasses are for someone who needs them. You’re not always able to see things as clearly as other people, but it really bears no impact on how you go about living your life. But if you were constantly being reminded that you wore glasses, you would begin to feel different even when glasses were irrelevant. Constantly acknowledging a difference, even if from the heart, can be more divisive than the difference itself, I’ve found. It only reinforces the separation and mutual isolation of both groups from each other.

I believe that although it might be difficult, the best thing you can do for someone with a disability is let them be themselves. Trying to force an idea of “normalcy” that doesn’t fit, or highlighting how they surpassed your low expectations can be far more damaging to their confidence and self-worth than any disability.

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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When My Daughter Appeared in an 'Am I Beautiful?' Facebook Post Without My Consent

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My 11-year-old daughter was born with a bleed in her brain and has cerebral palsy. She has had six brain surgeries and multiple major orthopedic surgeries on her hips, knee and Achilles’ tendons. She is truly my hero.

Today, she walks independently and often prefers to hold my hand. However, several years ago she was still learning to walk with crutches and long braces up her legs. It was at this time that an online publication wrote an article about my daughter after we were wrongly detained by the TSA.

facebook post of young girl with cerebral palsy asking Am I beautiful
Marcy’s daughter in the Facebook post.

I was shocked to find a photo from that article shared on Facebook recently by someone I don’t know as one of the “Am I beautiful? Type ‘Yes and Amen’” posts. I’ll admit that I’ve seen these before and haven’t given them much thought — however, my friend saw my daughter and called me. I thought there was no way it was my child, but when I saw the post my heart broke. I didn’t ask for this, and I certainly didn’t give my consent. How does a complete stranger have the right to use my daughter’s photo for this purpose? The post as of today has received 33,000 comments, 61,000 likes and 3,900 shares.

A few of my immediate thoughts that day:

1. This must be removed ASAP.

The privacy settings on Facebook control content that you have posted, but it is impossible to stop predators from copying pictures of our children that appear anywhere online. I attempted to remove the post by filing an online complaint that my minor daughter’s privacy rights had been violated without our consent. I never received a response from Facebook, but within 24 hours the item was removed. It was shared so many times before this though that I believe it’s probably still in circulation.

2. Facebook should have a responsibility to stop these posts.

Social media is wonderful when you want to share pictures of your kids, but it can be a massive black hole when someone else posts a picture. I felt completely helpless. I do not see any upside for Facebook to allow this type of piracy to continue.

3. Do not comment about (even “Amen”) or share pictures of children with disabilities.

You don’t know the whole story. You aren’t familiar with the parent’s perspective or the reason the photo was taken in the first place. This is exploitation. These children may be suffering or embarrassed about their condition. “Amens” on Facebook are not going to help.

4. My daughter doesn’t need pity.

My daughter is an amazing child. She is consistently making progress in areas we never expected. She loves school, loves dance class and her iPad and can’t wait to go to camp this summer.

The Mighty is asking the following: Describe a meme, image or sign you’ve seen shared online that struck a chord with you, for good or for bad. 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 Myself Before My Daughter Was Diagnosed With Cerebral Palsy

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I think everyone would agree that the worst thing about waiting is the not knowing. It can be torturous holding your breath until that moment comes, but ultimately you’d have a better sense of peace if you knew how long you had to wait, right? So if I knew that I just had to wait until Friday, I’ll be OK.

Well, I’ve learned with cerebral palsy, there is no Friday. There’s no date of cure or resolution. There’s just the day you realize you have to become content with uncertainty.

This day hit me when I was about to check out of one of my daughter’s specialist appointments. I used to drag on each appointment as long as possible, asking tons of questions and relying on the answers to bring me comfort. I felt if I could just make it to the next appointment, I would be OK. I could survive in between. But something was different after this appointment. I was smiling and not crying. I had no questions.

When your child doesn’t have a diagnosis, this can be a cause for high emotions and can cause any parent to be extremely tense or fragile. I was scared but thought to myself, “If we only had a diagnosis, then it would be OK because then we could have a plan of attack.” Attack. That’s how I felt about it, as though it was something I could fight off completely. Then the diagnosis of cerebral palsy came. Don’t get me wrong, it brought a huge sigh of relief, but I found myself looking forward to each appointment thinking somewhere it would somehow change. The pressure I put on each one led to increased pressure on the next. I realize now that I was sprinting — ignorantly. And this is a cross-country run. Oh, foolish me.

I met some really inspiring parents who gave me unsolicited tips or advice. I knew they could see the fresh dose of “new diagnosis” fear written on my face. At therapy one time, a mom told me, “It ain’t easy, but my motto is, ‘If your kid is smiling, then you should be, too.’” Looking back, I can’t even bear the thought of my baby smiling at me knowing I was fighting back tears of “what could be.” I wish I could have a chat with myself from 15 months ago, pre-diagnosis.

Hey Mama,

Life is going to get hard, but it’s going to be OK. Parenthood is going to look different for you than you might have imagined. Be grateful in each moment, even during the ones where you feel 100 percent helpless. There’s no one to blame, and no one is blaming you. She will get a diagnosis, as well as other titles, labels and terms used to describe her medically. Get comfortable with them, but don’t let them dim your light.

Watch your baby girl grow and don’t worry about everyone else. You’re on a unique road, so don’t expect others to understand it. Some days you’ll want to be treated the same, and some days you’ll want them to know that life is different for you.

The words “special needs” don’t need to scare you, either. I know you never thought they would be used to describe you. While they don’t define you, you will find comfort in them.

You’ll learn to live in the now, and in time you will discover the beauty that was created amidst this pain. You will adjust to the ups and downs and the possibility that today might be worse than yesterday, but tomorrow will be better. You won’t let this rollercoaster determine how you treat others, and you will certainly teach your daughter the same.

You won’t merely “survive” each moment, you’ll make the most of them. You’ll celebrate every tiny miracle that each day brings. On the days you feel defeated, you’ll find a moment of joy and forget the whole day was challenging. You don’t need to feel guilty for not always being supermom — you’re human. Her progress doesn’t solely rely on you; she will go at her own pace. Follow her lead and be strong for her.

Don’t compare her life to other people; this calls for a completely different set of rules. You can do this. You can be her strength when she feels weak. While you can control many avenues in your life, this one isn’t meant to be controlled.

Her life is beautiful. You will never “fix” cerebral palsy, but you can teach her to adapt to the best of her capabilities. While you try to teach your daughter the smallest of tasks, she will be teaching you about the big picture. So hold on tight and be prepared for the most amazing chapter of your life.

Christina Smallwood and her daughter
Christina and her daughter.

Follow this journey on The Waiting Room.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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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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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