Achondroplasia

Let me start off by saying what everyone knows about me: I love Disney. I worked at Walt Disney World, for God’s sake! My ultimate dream is to voice their first disabled Disney Princess. As a Disability Studies grad student, I just applied for the Diversity & Inclusion internship at Walt Disney Animation Studios, which is also my dream place to work at! But, when the live-action division of Walt Disney Studios isn’t diverse or inclusive to my fellow disabled actors, I need to throw caution in the air and risk my chances for the fellowship by writing this. Apologizes to the WDAS recruitment team in advance! Last Monday, “Game of Thrones” actor Peter Dinklage, who is a little person with achondroplasia, shared his concern for Disney’s upcoming “Snow White and the Seven Dwarves” live-action adaption. Dinklage said on the WTF with Marc Marson podcast, “You’re progressive in one way [Casting a Latina actress for its princess] but then you’re still making that…backward story about seven dwarfs living in a cave together.” He adds that he’s still open to the movie. “Progressive spin? Let’s do it. Yeah. All in. But I just don’t know…the dwarf community is tired of this shit.” A day later, Disney followed up with, “To avoid reinforcing stereotypes from the characters and have been consulting with members of the dwarfism community.” This statement made me thrilled because it sounded like Disney actually does care about the disability and dwarfism communities. However, any hope that I had with this movie dropped like a bomb when popular movie website The Wrap leaked within seconds that Disney is officially cutting the dwarves. “Disney will fill the void with a group of what they describe as ‘magical creatures,’ according to casting sheets…” the movie site reported. “They are currently looking for voice actors to give these creatures personality.” If I wasn’t caught up with a family emergency when I read the news, I would have thrown my cell phone across the room in absolute rage. My disability is cerebral palsy, so I can’t speak for the dwarfism community. But, as a disabled actress who would love to be represented by Disney, I feel absolute pain from this. It makes it worse that Disney erased cerebral palsy from a real-life character in Christopher Robin (their 2018 live-action take on Winnie the Pooh). Aside from anger, my other biggest feeling about Disney’s statement is confusion. “We have been consulting with members of the dwarfism community.” How in the world was the conclusion to remove the dwarves from the movie? How did the logic become, “To remove the ableism from the movie, we will remove the disability from the movie?” Who were these members of the dwarfism community who you were working with? Is Disney talking to disability organizations like Little People of America? A whole organization is much more effective than one person at a time. It makes me truly happy that Disney is progressive with its casting in race and ethnicity. Rachel Zegler, who made a big splash into Hollywood as Maria in Spielberg’s adaption of “West Side Story,” is going to make the Latino community proud as Snow White (And need I say, Disney casting a real lyric soprano was the greatest shock in the world. Disney actually resisted celebrity casting to keep Adriana Caselotti’s legacy intact!). For the upcoming “Peter and Wendy,” newcomer Alexander Molony and Disney/ABC star Yara Shahidi — a Native New Zealander and an African American actress — are the titular hero and the Disney icon Tinker Bell. And I don’t think we need to go on about fellow Black actress and rising pop star Halle Bailey’s highly-anticipated take on the Little Mermaid herself. But diversity and inclusion aren’t just race and ethnicity. It is different disabilities and bodies, as well! My real concern and suspicions are the possible real reason why Disney doesn’t want the dwarves in the film: Star casting. Actual disability representation will stand in the way with Tom Hanks as Doc, Lewis Black as Grumpy, and Leonardo DiCaprio as Sneezy, you know? “We need to have big box office names to make money and to keep Mommy and Daddy interested,” says Hollywood. Was Disney’s conversation with the dwarfism community actually about casting big names as dwarves? If Disney has to cast voice-over actors for the dwarfs or “magical creatures,” that’s a big red flag. I’m praying that Disney is seeing little people for these “voiceover” roles to make up for it. Don’t get me wrong: If these “magical creatures” are what the dwarfism community wants, then we need to support this decision. Dinklage’s opinion is absolutely not wrong and not out of nowhere either. The story of Snow White and the Seven Dwarves is controversial to the dwarfism community, due to problematic stereotypes and bullying. Scholars Erin Pritchard and Robert Kruse write, “A person with dwarfism is rarely represented as an ordinary human being, but rather a mischievous being — happy to be ridiculed and laughed at rather than with.” It should be noted that the general response of Twitter to Dinklage’s comments was comparisons to Grumpy. Disability advocate Rebecca Cokley tweeted on her life experiences in bullying, “…You HAVEN’T lived until you leave your office to frat boys drunkenly imitating your walk at a bar as you walk by, chanting ‘Heigh-Ho! Heigh-Ho!’” Despite this, the reactions that I have seen on this movie from the dwarfism community are generally either cast little people in the movie as the Dwarfs and have them come to the writer’s room, or do not do this movie if you’re not going to get proper consultation.  Actress Kiruna Stamell agrees with Dinklage’s opinion, but still pitches, “The seven dwarfs could live in a house that is only accessible to people 4ft 2in tall. With an adapted kitchen and adapted vehicles. So, all the average height people in their world are forced to bend over for 40% of the film, sit in little chairs and stoop to use the stove…and the perils of bad ergonomic design are really and truly explored.” Comedian Brad Williams adds, “Make Snow White end up with one of the dwarfs, how about that? I mean, they have jobs, you know? They got good friends. They got a house. They like to protect her. They’re diamond miners, so they’re rich. They’re self-made, wealthy…come on, how about you end up with the dwarfs, and you have a progressive Snow White, and everybody’s happy.” As a past consultant myself, these are the responses that I expect from my peers, not the suggestions to take away acting opportunities from their peers.  Additionally, while talking about the new creatures with me, Cokley remarked, “By removing the dwarves, Disney is absolving itself of doing any actual learning or making things better. The opportunity to apologize, build developed characters of substance informed by the community, and demonstrate actual leadership in Hollywood is how justice actually happens. The dwarfism community is done being grateful for being patted on the head.” On a brighter note, there is one victory in the disability-casting progress: One of “Peter and Wendy’s Lost Boys,” Noah Matthews Matofsky, has Down syndrome! It is going to be spectacular to watch people with Down syndrome see themselves in a Disney movie. It is frustrating to see while Disney is taking one step forward with Noah and Peter Pan, they’re planning on taking seven giant steps back with Snow White. Special thanks to Rebecca Cokley, Stephanie Farfan, Nicole D’Angelo, Keely Cat-Wells, Marissa Erickson, and Matthew Josephs.

I am a 22-year-old with achondroplasia dwarfism. When I walk into public spaces usually occupied by families like supermarkets or shopping malls, I am often confronted by the reactions of children. I have noticed patterns among kids and parents that can make an interaction either positive or negative for all parties involved. If you are a parent now, or may be a parent in the future, I hope this article is informative. I strongly believe that a child who is taught to be accepting of all kinds of people will grow up to be an adult who is accepting of all kinds of people too. When a young child sees someone with dwarfism, usually one of two things will happen. They will either get the attention of their guardian and point out the person, or they will be a bit more vocal and announce their surprise to see a Little Person to everyone around them. Sometimes children will not say anything at all, but those in the preschool to elementary age range often do. I don’t think this need in children to point out difference is bad. Kids have a magical curiosity wired into them which opens up their mind to so much. If they see something different, of course they will want to know why and how it is different. I have seen parents and guardians react to their children’s responses in a number of ways. Some will take their child away as quickly as possible with a look of embarrassment on their faces. I have also seen parents either ignore their child or tell them to “quiet down.” Unfortunately, some parents discipline their child when confronted with this situation. I have witnessed both verbal and physical discipline in public. It upsets me to see a young child being scolded for their curiosity. Now every time that they see another Little Person, there will be a negative connotation because of the time they were punished. Calling out someone’s physical difference may not be socially acceptable all the time, but it is a great opportunity to learn. Some parents encourage curiosity in their children and answer their questions. The children who do not get their curiosity answered are left frustrated because there is still something they do not understand. Parents who promote this curious nature in their children will often take the time to have a conversation with their child about dwarfism or physical difference. I have seen the start of so many wonderful conversations between parent and child because they saw me and the child had questions. Something else that does not happen as often, but I encourage, is when the parent tells the child to ask me questions. It is incredible how simple their questions are and how quickly they go from curious to comfortable with dwarfism. These kids usually ask questions like, “How old are you?” “Why are you so short?” “Do you drive a car?” “Do you have a job?” The questions are almost always simple, easy to answer, and they can change the way the child responds to people with dwarfism for the rest of their lives. Once the kids understand the only real difference is height, and other than that I am an ordinary person, their curiosity has been satisfied. These conversations are easiest to have with children because their minds are not yet filled with preconceived notions. However, I have also had conversations with adults who are a bit more sophisticated but are still generally curious about my difference. I think these conversations are wonderful because they help to close the social gap between non-disabled and disabled people. Letting children ask questions is so important. They can often see the truth of a person much easier than adults can. Even though a busy moment in a grocery store may not seem like the most convenient time for a life lesson, the benefit of taking a minute to talk can change everything. The child with a new point of view on physical disabilities will share it the next time they’re in a similar situation and the domino effect will keep going. Even if you and your child do not spontaneously come across one of these teaching moments, any time is a great time to have a conversation about physical differences. I believe satisfying curiosity about difference today can create a better world tomorrow.

To parents expecting a child with achondroplasia dwarfism, It is OK to be afraid of the unknown; that is what makes us human. My hope is to illuminate the path of the future enough that you will feel comfortable to take a step forward. There are so many negative or fear-inducing articles online pertaining to dwarfism, so I would like to add my opposing perspective. Hello, my name is Sarah and I am a 21-year-old college senior. I study theatre, specifically directing, and I am incredibly passionate about it. I love spending time with my friends. I have a strong and personal connection with my faith. I drive a car. My favorite food is steamed dumplings. I love to travel and to go to museums. In my music collection you will find quite a bit of Queen, Phil Collins, and Beyoncé. The Pacific Northwest U.S. is my favorite place. I am an activist. I also have achondroplasia. It is just another descriptor in a long list of things that make up who I am. Of course it plays a part in my life, but so does everything else I stated in this paragraph. Now that I have given a brief introduction into who I am, I would like to tell you that your child can have a wonderful life. They will be a whole person with a million different qualities. Their life will be full. Above all, your child will never “suffer from” dwarfism. Medical language and literature can get overwhelming with achondroplasia. There is a medical aspect to it, but it is not generally as all-consuming as some think. Your child could need some surgeries, but so do many other children all around the world for various reasons. There may be physical barriers like a high sink or a tall counter, but this is where a stool comes in handy. You’ll be amazed when your child find their own way around barriers. There are also the social aspects of dwarfism that many people have questions about. Just like any physical difference, some people may have preconceived ideas. However this is where education comes in, and this is why I am writing. There are many other activists with dwarfism that are educating the world right now about the countless similarities and very few differences it entails. They are building a better world and paving a road for your child. There are amazing organizations like Little People of America with national conferences once every year and regional conferences biannually. This is a great resource to get to know other people with dwarfism and get connected to the right doctors in your area. LPA is where my parents met. Both my mom and dad have achondroplasia. This is why I also have it, and so does my younger brother. I would not exist without this organization. There are also places like The Painted Turtle, a summer camp in California. Every year there is a week for kids with dwarfism to go and all be together in a fun, encouraging, happy and accessible environment. I was a camper in my younger years and I only have wonderful things to say about this place. Your child with dwarfism can live an awesome life. I hope that this letter has brought you comfort in knowing that. Your child will be unique, but not because of dwarfism, because they are yours. They can love music or playing outside. They can become a doctor, an engineer or an author. They can fall in love. Do not worry about what their life will be because nobody can plan that. Just be ready for a great adventure.

The Night Before: Kristen DeAndrade was born with achondroplasia (a form of dwarfism) and will be going into knee and ankle realignment surgery tomorrow. She’s appeared on several national television networks and and shares the details of her life in this video.

Kristen DeAndrade‘s mantra is “little legs, big heart.” It’s a mantra that’s been shaped by the 30-year-old’s life with achondroplasia, the most common form of dwarfism. “There is always going to be someone, somewhere who has something to say, ” DeAndrade said. “Even if I was pressured, it’s physically impossible for me to have another body type.” DeAndrade views her body as a canvas reflecting her medical journey. “I’m not afraid to show the evidence of what I have been through,” she said. “It isn’t something I think twice about.” For DeAndrade, strengthening her self-worth has made it easier to drown out any unwanted opinions she may hear. “I don’t walk around reminding myself I am a woman with dwarfism who has an extensive surgical history,” she explained. “I’m Kristen. A woman with little legs and a big heart, lover of hugs and laughter, unafraid to show her sassy side.” This summer holds significant importance to DeAndrade, who lives in Charleston, South Carolina. On May 2, DeAndrade underwent spinal surgery to reverse damage to her spinal cord due to spinal stenosis, a condition common among those living with dwarfism. “Hearing my surgeon describe how severe my spinal injury actually was – losing all motor function on the operating table and facing the possibility of living the rest of my life in a wheelchair – those words were a blow to my heart,” she said. “As a result I have been offered more perspective. This summer, more than ever before, I am grateful to be standing and moving on my own two legs.” Read More: This Is What It Looks Like When You Feature Disabled and Chronically Ill People in Magazines Next: Bekah Georgy Shares What Dressing for Summer With an Eating Disorder Is Like

I’ve lived in a nearly perfect world for almost two years. My daughter, whose diagnosis (achondroplasia) is becoming more and more apparent, generally elicits only the kindest of remarks from strangers who recognize a difference (the difference being disproportionately short arms and legs, and a larger-than-average head size). I am almost overwhelmed by how many people tell her what a doll she is, or ask me about the condition. I say “nearly” because there is always something that threatens our safe and happy bubble. At 22 months, Naomi doesn’t appear to recognize these things, but I do. The sticker on the back of the pickup that reads “I HEART MIDGETS,” the occasional reference to “dwarf-tossing” or anything relegating the value of little people to sideshow entertainment. It always hurts, but the positive experiences we’ve had, as well as the outpour of love and support from our community of family and friends, has generally eclipsed these negative instances. Except for one. And this one is a work in progress. Naomi attends an hour-long physical therapy session once a week in a center that also boasts speech and language as well as occupational therapy services. One 3-year-old, E, whose speech session is at the same time as our PT appointment, has walked in every Tuesday, for almost three months, told his mother how much he dislikes that baby (my baby). It started simply: “Mom, I don’t yike that baby” but gradually progressed into something more targeted: “Mom, I don’t want to go near that baby because I don’t yike how that baby yooks,” to the current dance of his hiding behind the wall, telling his mother: “I don’t want that baby yooking at me.” Now, he is a child, I know. But here’s the thing: children are honest and have no filter between what is in their heart and what comes out of their mouth. He doesn’t like my daughter, and from what I observe, it has only to do with how she looks. His mother disagrees. She has only offered one comment to me in roughly 12 visits, and that was this: “He hates all babies, not just yours.” (Thank goodness?) Maybe she’s being truthful. Maybe he dislikes all babies. But the way his mother wouldn’t look me or my daughter in the eye when she said this tells me differently. Not to mention the fact he refrains from commenting on other “babies” who wait in the lobby. She’s covering for him, and by extension, herself. Over the course of three months, I’ve mentally combatted this 3-year-old’s insults: “She doesn’t like you either.” “Well, I don’t like you.” I’ve also given his mother an earful (in my head, of course): “You must not be a very good parent to have a child who is already a bigot.” “My daughter loves everyone… except your awful son.” The fact that I am a coward who hates confrontation isn’t the reason I haven’t spoken up. In fact, one thing motherhood has given me is the ability to stand up for my child, even when fear tells me not to. But I’ve kept quiet for two reasons: 1. I am ashamed of some of the things I’ve wanted to say. In the end, he is a child who is battling his own challenges, and a targeted comeback would only find me guilty of the same offense against my own child. We are at a therapy center! Lose-Lose. 2. I’m not confident my comebacks would accomplish anything. At this point, their actions and words hurt, and until I can remove myself and be content in knowing this is their problem, and not ours, I fear my words may only fuel their ignorance. As parents, we are teaching our children by example, and I want Naomi to know the power of being able to shake things off, even if you have to fake it for a while. E’s mother knows my daughter is different, and shame on her for not using our weekly interaction to her advantage, to teach about others with developmental disabilities, invisible or obvious. To widen his perspective at a young age. To foster compassion and replace fear with understanding. I hope my silence allows her to reflect on these things. And when I am ready to say something, I pray my words are graceful and informative, devoid of snark or defense. I’ve enjoyed my almost two years of a nearly perfect world, but in reality, it is experiences like these that will shape my daughter and myself and cause us to grow. I hope my example is the right one and that I make the majority of my inevitable mistakes before she is old enough to notice, so in the future, when she encounters someone who dislikes her for what she was born with and I’m not around, she knows in her heart whether it is an opportunity to educate or to simply ignore. Because even though she may always be the smaller one, I pray she’ll always be the bigger person. The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. Check out our Submit a Story page for more about our submission guidelines.

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. 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. 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.