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

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.


To Myself Before My Daughter Was Diagnosed With Cerebral Palsy

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.

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

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.

Girl With Cerebral Palsy Fights for Disability Representation in the Media

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.

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

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.

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

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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