boy with dwarfism smiling in his crib

Why I Post Photos of My Son With Thanatophoric Dysplasia

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Will my son mind I am posting pictures of him to social media?

This is the conundrum most parents are facing with sharing an adorable photo of their child’s momentous and not-so momentous moments.

Raising my firstborn, I snap a myriad of pictures of my miracle boy. Proud mom? You bet.

Most times, the comments I see aren’t, “My, how he has grown.” Because, as a child with dwarfism, growth happens very slowly. I notice slowly too. A shirt fits too tightly or
a onesie doesn’t snap closed. But, the pictures give hints of the transition.

son with dwarfism smiling

The pictures also chronicle the making of a miracle. When a mother is given a potential diagnosis of thanatophoric dysplasia meaning “death-bringing,” it’s devastating. The hopeful pregnancy becomes a distressing circumstance, to say the least.

Now, imagine this same mother searching the internet and finding a picture of a joyous, happy 10-year-old. Shock, unbelief and relief combine together as hope begins to fill her heart. I’d wished I’d seen such a picture when Samuel was born.

However, I did not. Instead, I was counselled not even to look on the internet.

I did finally look… I had too. I needed to know. I found many pictures of sonograms but no survivors. No images of sweet button noses, dimpled smiles or a video of a child’s
belly laugh. I had no way of knowing my son would grow to have a happy temperament which would light up my world and all who would come to know him.

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son in motorcycle t shirt

How could I know? I had no evidence or proof to the contrary.

This is a major reason I post pictures of my son. To give this proof. To fill the heart of a
mother with hope. To show miracles happen.

mom with baby after birth

The question remains, would my son mind his proud mother displaying him in most of his glory all over social media? I read in another article about this topic where a mom asks her 8-year old and 10-year old for permission to post. I contemplate this strategy but quickly dismiss it. Why? Because my son is nonverbal. And, as much as my son loves his iPad filled with his favorite Elmo videos, he has no concept of Facebook or any other social media yet.

This is the challenge of developmental delay. Will he achieve this awareness? Time
will tell.

I have been in contact with many mothers who were given hope from a simple picture. And, as a mother who was given no hope, I know how valuable an image can be. A snapshot of my son laughing could give another child a chance at life.

son in carriage

When another mom receives news from the medical establishment like I had, they can now search the internet and see Samuel’s belly laugh on You Tube. Further research would reveal my son’s website or Facebook page. For these mothers to see a survivor, they can then advocate for their children and hopefully inspire doctors to believe as well.

I’d love to hear your thoughts. Post or not post, that is the question.

Follow this journey on A Miracle in a Living Room.

 

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To the Baseball Stadium That Hosted a 'Midget Wrestling' (Yes, Really) Event

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I write this letter to the Charleston RiverDogs event planning staff both frustrated and heavy-hearted regarding a special “event” that took place at your stadium on May 7, 2016.

On this night, your event staff hosted Micro or “Midget” Wrestling (as your pamphlet and radio ads worded it) as a part of your Saturday Night After-Show. My reason for addressing this with your staff is in no way to shame you or berate you, but to educate you on why hosting an event that exploits, objectifies and trivializes individuals with special needs for the entertainment of able-bodied people is both damaging to the reputation of your organization and to the disability community, particularly to those with dwarfism — a medical condition each of the wrestlers you hosted were born with. I hope my perspective will awaken you to how spectacles like this, as well as the use of the term “midget,” have a negative impact on the lives of people living with dwarfism and all who love them.

sign that advertises for midget wrestling

From the video of the event on your RiverDog Facebook page, I could tell that many of the men wrestling (or should I say “performing” for everyone’s amusement?) were born with a form of dwarfism known as achondroplasia. Achondroplasia is the most common form of dwarfism. It affects approximately 1 in 25,000 individuals and most people with this condition are born to parents that are of typical height/stature. It is a genetic disorder that occurs at random by altering the FGFR3 gene, which is one of many genes responsible for bone growth. For those with achondroplasia, this gene alteration causes their limbs to not grow as long as the typically developing person, as well as the skull to grow slightly larger than that of the typical person.

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This medical condition is in no way a laughing matter, nor is it something that should stigmatize a human being for simply being born a certain way. Unfortunately, we live in a society that sees “different” as amusing when we should see it is beautiful. We live in a society that would rather run from, or in this case, laugh at what we don’t understand rather than seek to empathize with and truly know someone who appears to be “different” than us. The lives of people with dwarfism are affected daily by false media representation and misguided perceptions, which often mask the fact that dwarfism is a medical condition that, like any other, comes with both challenges and discomfort.

Many individuals with dwarfism (notice how I use proper person-first language when I phrase that), have endured countless operations to correct bowed legs, replace arthritic joints, lengthen limbs and more depending on the individual. Hilarious, right? On top of the physical discomfort and medical complications, individuals with dwarfism live in a world that is in no way designed for them. Simple daily tasks such as grocery shopping, pumping gas, climbing stairs and doing laundry can take a lot of effort and accommodation. Sounds like a lot for one individual to juggle, right? But there’s still more to mention. Even with all of those challenges, people born with dwarfism also face discrimination, social ostracization and ignorant mockery simply for being born with a skeleton that differs from that of a typical human being. Those with this condition are heavily marginalized, and somehow, it is still considered socially acceptable to view the condition as humorous, which has everything to do with a lack of education.

You may be wondering where my perspective of dwarfism stems from. I too was born with a form of dwarfism known as psuedoachondroplasia. Like achondroplasia, my condition is caused by a random gene alteration at conception. As a result, my arm and leg bones stopped growing at anearly age, the cartilage cushioning my hip and knee joints did not fully develop and my spine acquired severe scoliosis. I’ve endured dozens of surgeries including joint replacements and the straightening of my legs and spine.

Despite a childhood and young adulthood full of many physical and social challenges, acquiring dwarfism has proven to be a foundational contributor to the development of my compassionate heart and spirit. It has given me wisdom way beyond my years and insight into the human condition. Like so many others with dwarfism, I have led an accomplished and beautiful life. My condition has challenged me and empowered me to seek justice for those that are seen as “less,” whether it is because of their race, socio-economic status, ability, religion, gender or sexual orientation. I do not sell out because of my difference. Instead, I embrace my individuality, which then allows me to love and accept others exactly for who they are. I am an involved resident of Charleston, an educator, an artist/designer, a future mental health professional and an advocate. As an advocate of this marginalized group, it is my duty to address and shed light on instances like this that have a negative impact on my life and the lives of others with disabilities.

The negative implications of hosting a “midget wrestling” show at your stadium are as follows:

This event showed all of the young children watching it is OK to make fun of those who look different — in fact, it encouraged them to.

It taught everyone watching that dwarfism is a joke rather than a disability.

It advertised that the word “midget” is appropriate when describing a person with dwarfism. This word is highly derogatory towards those with dwarfism.

Finally, hiring this performance team encouraged this sort of spectacle to continue. I am fully aware this team was already traveling around the nation putting on similar shows. I plan on addressing them directly in another letter at another time. Even so, it was obvious from the team’s website that the company was exploiting people with dwarfism based on tag lines such as, “Book our midgets for your next event!” Seriously? Are you kidding me? How did at least one person on your staff see this and not have the slightest inkling it was wrong? Would it be funny if we threw another marginalized group into the arena based on their race or other identity? Wrestle with that. Pun intended.

You may have noticed this letter was written with a lot of emotion, and I have to tell you, it certainly was. When several of my colleagues brought this event of yours to my attention, my mind began to spin, and I felt my body consumed with shame, disgust and sadness. I thought to myself, “How is it 2016 and people with disabilities are still portrayed as circus freaks?” Just when I thought we were making headway as a society towards the acceptance of differences, your event reminded me just how far we have to go.

I am writing you all at Joe Riley Stadium to ask you to never hold an event like this in our city again. It is my genuine belief this event was meant to be nothing but amusing and lighthearted, but I can promise you it has already had its negative ripple effects. Even on social media, I witnessed members of the community commenting on the event video with “haha!” and tagging their friends who would also find the video hilarious. This city is home to several individuals with dwarfism, and I can guarantee you, someone in that audience loves someone with dwarfism and was left utterly downtrodden by what they witnessed. I have attended many of your games and would have been downright humiliated if I were in attendance that night.

Once again, it is not my intent to berate you or even taint the RiverDog name. You all are a wonderful organization that has brought this city so much joy. I realize this is a widely misunderstood scenario, and I firmly believe we don’t know what we don’t know. I hope my perspective will cause you to consider everyone you serve, and understand the consequences of your decisions. It is possible to hold entertaining events that do not hold this sort of weight for certain groups of people, and I encourage you all to continue serving our community through fun that is inclusive to all.

Thank you very much for your time and consideration.

With heart,

Brianna Beck

The Mighty is asking the following: Describe a moment where you experienced intolerance or inaccessibility. What needs to happen to change this? Check out our Submit a Story page for more about our submission guidelines.

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To the Mother at Target Whose Child Was Curious About My Dwarfism

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I saw you run into Target this morning as I was heading in behind you. You looked busy! I could tell your mind was racing through your list, making sure you grabbed everything before you rushed off to the next errand with your cute child in tow.

Kate Braun

You might not remember me, but we both were in the dairy aisle and your child saw me. He was curious and asked you, “Mom, why is that lady so small?”

You didn’t hear him, so he asked louder, “Mom, why is that lady so small?”

You didn’t hear him again, so he shouted, “Mom, why is that lady so small?”

I looked over, and you were so mortified. My heart broke. You hushed your son, grabbed the milk and pulled him out of the aisle. You left so quickly I didn’t have the chance to let you know it’s OK. I wanted to tell you I run into this situation all the time, mostly out shopping.

Kids are innately curious. They’re trying to figure the world around them, and they want to know why things are the way they are. Your child is not the first, and I’m not embarrassed by your child asking.

This situation has happened more times than I can count, and I’m always amazed that kids ask the same questions each time.

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Why is that lady so small?

Is she a mommy?

Why does that mommy have a big head?

Can that mommy drive?

I know you’re busy and don’t always have the time to explain everything to your child right when they ask you. You probably didn’t think this trip to the store was going to involve a teaching moment about explaining differences. You were just hoping to remember everything on your list. I get it. However, if you don’t mind on your drive home or before bed tonight, can you explain my difference to your child? Children need to learn that being different is OK.

They’re going to run into so many people in their life who are different from them, and through my experience (although I’m not a mother), answering kids questions when they occur and modeling behavior is key. Children look to you as a model to understand differences and how to act in those situations. Differences shouldn’t be ignored but celebrated because we’re all a little different from each other in some way or another.

Now I can’t speak for everyone who has dwarfism, but though my experience when I have had the opportunity to explain differences to kids, I have found a few similarities in their curiosity:

• Kids aren’t as interested in labels or terms as much as questions about what I can and can’t do. They don’t care as much about the fact I have dwarfism or achondroplasia as much as they care about if I drive, how I live in a house by myself or if I’m a mommy.

• It’s important to reinforce the disability or difference they see is only one characteristic of the person. I have likes, dislikes and live life just like any other adult.

• It’s important to explain people with disabilities can do many of the same things, but it might take them longer, and they might do them in a different way or use assistance.

• In my opinion, I love it when parents encourage kids to ask me questions. Not every person may be comfortable having a child ask them questions, but I love it. I’ve had many parents come up to me and say, “Excuse me, my child has some questions for you about your disability, do you have time?” I think it’s polite and always gives me the opportunity to decline if I don’t have the time.

• Finally, kids don’t always understand that staring is rude, it’s just a way they work out their curiosity. Teach them that it’s OK to ask questions but guide them in how to ask.

Sincerely,

Kate

Follow this journey on kateandbraun.com.

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 [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 a Friend Used the M-Word to Describe My Dwarfism

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So let’s talk about the M-word. The word “midget” is a highly offensive term to people born with dwarfism.

I understand if you didn’t know that it was offensive. A lot of people don’t. A good friend of mine in college didn’t know either.

Kate Braun with her husband and puppy, Louie

One night while driving to dinner with her, she was telling a story — I can’t even remember what it was about now — but in the middle of it, she used the word “midget” to describe me.

As soon as the word came out of her mouth, it stung. I was so surprised she had used that word to describe me! How could she? We had been friends for so long. Did she not accept me? Why would she view me like that?

I had no idea how to respond.

When the emotional rant in my head subsided, I realized she had kept on telling her story without skipping a beat. She had no idea what she said was offensive. I didn’t address the issue at the time because she would feel awful, but I knew I needed to educate her because she wouldn’t want to continue using hurtful language.

Strangers have called me a midget before, but I realized at that moment many loving and well-meaning people out of lack of understanding or ignorance struggle to address differences in people.

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The word has been used over time to refer to a person on display and a spectacle. It has come to be used as a derogatory term to label and demean a population of people who are simply small.

To a person with dwarfism, the word “midget” can be as painful as someone using the R-word to describe a person with an intellectual disability. These words are derogatory because they label a group of individuals by their differences, typically in a negative light.

I am not my label. I’m a person who was born with achondroplasia. To call me a midget puts a label on me that denigrates my individual nature.

When talking about someone who is different from you, choose words that recognize and empower the individual instead of derogatory words that degrade or shame. If you’re worried and don’t know if what you’re saying could be offensive, it’s always OK to ask the individual.

Kate Braun with her husband

I have had many situations where people have asked me, “What is the best way to describe the condition you have?” I love these situations because it gives me an opportunity to help others understand more about my difference and shows they aren’t making assumptions.

It’s always appropriate to describe me as “a person who has dwarfism” or “someone who has achondroplasia.” Two words, which are oftentimes associated with my condition, are “dwarf” or “little person.” I don’t mind being described as a little person. It’s especially helpful for children because it helps them better understand that we are just smaller people.

It’s also accurate and acceptable to describe me as a person with dwarfism. However, to label me as a “dwarf” puts my condition ahead of my individuality and reinforces the physical difference. (Note: There are some people with dwarfism who aren’t offended if you would refer to them as dwarfs. But midget is fairly universally viewed as a negative label.)

Thank you for allowing me the opportunity to share my perspective. If you hear someone using the word “midget,” I challenge you to speak up and educate others.

Follow this journey on kateandbraun.com.

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 People Say, 'You Don't Look Like a Little Person'

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I am a little person. I have been a little person since birth and will be a little person for the remainder of my life.  

Over the past couple of years, it’s become increasingly more common for people (mostly outside of the dwarfism community but also sometimes within it) to say things to me like “but you’re not that little” or “I don’t see you as a little person.” After increasing frustration with these comments, it’s time for me to unpack them and spread a little dwarfism awareness.

You see, I don’t have achondroplasia, the most common form of dwarfism. I therefore don’t look like I have achondroplasia… since I don’t (surprise surprise!). There are now more than 400 recognized forms of skeletal dysplasias, each with unique features and differing body proportions. Really the only feature shared among these conditions is short stature.

The Little People of America defines dwarfism as a medical condition causing short stature, usually resulting in an adult height of no more than 4 feet, 10 inches.  At 4-foot-seven, with a diagnosis of spondyloepiphyseal dysplasia congenita, I clearly fit the bill. If you want to get technical about it, this adult height is less than three standard deviations below the mean — clearly outside the “norm.” I have been outside this “norm” since birth.  

Most little people are around 4 feet tall, and I recognize the fact that I am taller endows certain privileges. I can reach most (though still not all) items at grocery stores. I can usually be seen when standing at a tall counter-top (although not if I’m using my scooter). I can reach the showers at the gym. I can comfortably reach an ATM. However, these privileges do not negate the fact that I have dwarfism, that I face daily accessibility challenges related to my dwarfism and need to utilize adaptive equipment (pedal extensions and a tall booster to drive, a scooter to get around, stools in the kitchen, to name a few), and that I have dealt with ignorance and discrimination due to my dwarfism throughout my entire life.  

To say that I “don’t look like a little person” minimizes these lifelong experiences. Since I was a child, the world has categorized my body as “different.” These experiences have had a huge impact on my identity and my interactions with others, from children, to teachers, to doctors, to random strangers, all of whom feel the need to comment on my body’s differences, usually pointing out these differences are “weird” or “bad.”  

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sarah with a pink dress on

This is not the place to catalogue these experiences; additionally, I feel I shouldn’t need to “justify” my lived experience of dwarfism. But just as an example — walking to my car last week (several days before St. Patrick’s Day, wearing a green headband) — a man felt the need to call out to me that I was a “little leprechaun.” The discrimination and ignorance faced by people with dwarfism is not limited to people with achondroplasia, and pretending this is the case excludes many people who are fighting the same daily battles for acceptance and equality.  

The past several years have seen an explosion in reality TV shows about dwarfism.  While I applaud the awareness that some of these shows have brought, I do wonder if they might be contributing to society’s narrower view of what someone with dwarfism looks like. When I hear “you’re not that short” and “you don’t look like a little person,” I wonder where people are getting the information they think they need to make these judgments. Every new child I meet gives me a “look-over” and almost always says something along the lines of, “Wow you’re really short” — if children can tell without a doubt that I’m little, why is this so difficult for adults?  

Maybe because there is still the perception that to be a little person, to have a disabled body, is a “bad thing.” People think they are giving me a compliment when they say I “don’t look that different.” But let me be clear that my body’s visible differences — my stature, my proportions, my gait, my scars, my ribcage — are not a “bad thing.” My 4-foot-7 body with dwarfism is just as beautiful and flawed as a non-disabled body, and no less valuable. And it is just as much the body of a little person as someone who’s 4 feet tall and has achondroplasia. I am confident in my appearance and have no desire to change it, but pretending I “don’t look that different” invalidates the accessibility and social discrimination I have faced for 25 years. This attitude furthers the oppression of people with disabilities by playing into this idea that it’s good to “look normal.” Furthermore, no one has the right or the ability to judge another person’s lived experiences based on limited information and preconceived judgments, and it is ignorant and dangerous to assume you can.  

The next time you feel the need to question someone’s identity or lived experience of disability, please think twice about whether or not this is your call to make.  

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. 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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10 Things to Never Say or Do to a Person With Dwarfism

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The other night my husband and I partook in the mundane activity of grocery shopping for the week. As usual, I perused all of the domestic and imported cheeses while my husband scrolled through Facebook blissfully unaware of the supermarket experience.

model

As we made our way to the frozen foods aisle, searching for puff pastry sheets for a delightful dinner I had planned, a gentleman stopped in the aisle and stared at us.

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Not a big deal, most people gawk at least for a moment or two. As we walked past he said something to me that I didn’t quite get, so I replied, “What?”

“Do you want to hear a joke?” he asked.

“Sure, why not,” I replied, sighing.

“OK,” he said, as he bent down and placed his hands on his knees with his eyes a little too close to my cleavage, “Why do midgets love soccer so much?”

I let out another sigh. “I have no idea. Why?”

He could barely contain his excitement for the punchline he knew I was going to love: “Because the grass tickles their balls!”

We started walking away, and I dryly replied over my shoulder, “Wow, maybe if I had balls I’d find that funny.”

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He shouted after us: “It’s a joke! Can’t you take a joke? All right, all right, how about another one? Why am I a giant?”

(Let’s pause for a moment, because I need to let you all know this man was maybe 5-foot-4 — on a good day.)

We didn’t respond and were already in another aisle when he shouted out, “Because I’m an idiot!”

After this particularly sigh-inducing and eye-rolling encounter at the grocery store, I decided to write up a great, easy-to-use, printable and portable, top 10 list of things to never say or do to a person with dwarfism. Please enjoy!

1. Bend over to talk to us.

Trust me, I can hear you. If LeBron James were standing next to me talking, I would be able to hear him, too. And why is it always the shorter men and women who do this to me? Literally, sir, you’re maybe a foot and 2 inches taller than me. Please stop embarrassing yourself.

2. Assume we want to hear your latest and greatest midget joke.

No, I don’t. Just stop yourself before you even think of asking if we want to hear your joke.

3. And then criticize us when we don’t laugh at your horrible midget joke.

Oh, I’m sorry. Was I supposed to find that insult about me and my existence humorous? My bad.

4. Tell us you’re “twice our size!”

I’m assuming you failed high school geometry, because unless you’re more than 8 feet tall, no, you’re not twice as tall as me.

5. Pat us on the head.

I’m appalled I even have to add this to the list. People who do this are trying to assert their dominance. As in, I’m the dominant person in this interaction, so I will pat your head to show your stature and place.

After a co-worker accidentally patted me on the head, she immediately said, “I am so sorry. I didn’t mean to pat you on the head. I was aiming for your shoulder. I would never do that. I am so sorry.”

6. Reach over our heads.

Like the airspace above my home, I own the immediate space above my head. Don’t reach over me to do anything: grab a door, shake someone’s hand, high-five someone, nothing. Never. Ever.

7. Put your hands on me for any reason.

Don’t touch me or maneuver me physically because you perceive some sort of threat ahead that you don’t think I’m aware of. As we all say to small children, “Use your words!”

8. Tell me I’m inspirational when I’m…

…pumping gas, grocery shopping, walking my dog, waiting in line, ordering a smoothie, shopping for lingerie, etc.

9. Take my picture.

No, not going to happen. And if you do, and you share it to social media, I will find it, report it and do everything in my power to get your account deactivated.

10. Take a picture of my child or any child with dwarfism.

See #9 and then add involve the authorities or the mafia, whichever is quicker.

With this simple list (printable, postable and shareable), you’re well on your way to having an awesome interaction with a person with dwarfism!

Follow this journey on Psh, Totally.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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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