Do you want a boy or a girl? Every expecting mother has heard the question. While some may have preferences, spoken or not, the most common answer I have heard is: it doesn’t matter to me as long as the baby is healthy. Naturally, this is the wish of every expecting parent, but what if your child wasn’t healthy? What if you child has a birth defect or disability? Are they no longer a child? Do they become some type of other? If like me, you cringed at the mere suggestion, then you know how essential it is that we find a way to normalize disabilities to ensure that all children can experience the same childhood joys and opportunities, in school, recreation, and beyond.
The initiative to normalize disabilities is not new. In fact, it is decades in the making. While we have seen some improvements, those with disabilities are far from being accepted in the mainstream. The opening of a new accessible park or introduction of a disabled character is met with extreme acclaim and notoriety. Not that this is bad. It is a step in the right direction. However, with proper awareness and greater efforts to include these children in schools, recreation, and the media, I believe we can one day reach a point where society is able to see the person- the child– and not their disability.
Why I Want to Normalize Disabilities
When I began my website, I wanted to ensure that I used this platform to be a voice for these children. No, I do not have a child with a disability. In fact, I can’t even remember knowing any growing up. My first encounter with a person with a disability was the birth of my niece.
Since there were no indications on preliminary ultrasounds, my family was quite taken aback to discover that our new family addition had only one hand. My family cried for what we all took to be a horrific obstacle that would have to be overcome, both for her and her caregivers. Would she be treated differently? Would we treat her differently? Granted, she has her fair share of struggles and anxieties over unwanted attention, but we have found that her disability does not define her. She is a smart, energetic, witty, silly and all-around amazing girl… who happens to have a nub in place of an arm.
Most days I entirely forget that she even has a disability. I picture her smile, hear her giggle and share in her excitement when she accomplishes new feats: swimming, gymnastics, and the derby to name a few. While she and our family have managed to normalize the disability in our own minds and hearts, she faces an entirely different impediment when she heads out into the world.
On the first day of kindergarten, she stood up in front of the class and said, “Yes, I only have one hand. Yes, I was born this way. Go ahead and take a look, but let’s get over it.” Occasionally, she will voice a desire for a hand or attempt to hide her nub, but it is out of frustration over the attention, not for lack of feeling complete. She uses a prosthetic hand for the purposes of riding her bike, but doesn’t wear it in day-to-day activities. Why should she? She is just as capable as any other child, just as whole. While her disability has proven to be an occasional irritation, it has not defined who she is or greatly affected her relationships and childhood activities. Unfortunately, this is not true for all children with disabilities.
When It Becomes Essential to Normalize Disabilities
Just a few short years later, my husband’s sister gave birth to a beautiful baby girl. Within days of her birth, Annebelle was back at the hospital in the neonatal intensive care unit. From this day forward, she would be spending an enormous amount of time in hospitals, seeing specialists and in various therapies. Within her first year of life, Annebelle was diagnosed with Incontinentia Pigmenti (IP), infantile spasms (a rare form of epilepsy), focal epilepsy and cerebral palsy.
Despite these diagnoses and the poor prognosis, she has been thriving. While she is still developmentally delayed as was always expected, nothing can stop her from living her life. Annebelle is the happiest, most high-spirited child with so much curiosity for the world around her. She is consistently defying the odds and looking for more out of life. Her mother, Katie, has been her biggest advocate and won’t let these conditions and disabilities define who her daughter is.
Katie left her career to stay home with Annebelle to ensure she had the best care possible. Despite all her efforts, these conditions constantly add new challenges to the already difficult task of raising a small child. To bring awareness to Annebelle’s conditions and disabilities, Katie began an Instagram account to document her journey and help people to understand what life is like with these struggles. She called it AB+Me (Annebelle + Katie).
Thousands of families across the country were inspired by Annebelle and captivated by her smile and charming personality. Soon it became clear that AB+Me was more than just an outlet for her to share their journey. This was exactly what we all wanted- Annebelle to be seen as a child not a “disabled child.” From here, it became Katie’s dream to see a world where disabilities were normalized and her daughter could be included and not gawked at. Annebelle was selected as a brand rep for a small boutique and it was here that Katie found her niche. By introducing Annebelle’s disabilities to the world of fashion and social media, Annebelle could be seen for who she was and not what she was diagnosed with.
Due to her cerebral palsy, Annebelle was had difficulty swallowing and developed an aversion to eating orally. Multiple surgeries later, she receives nearly all her sustenance and hydration from a feeding tube. Because of her tube, Annebelle is often forced to remain in her stroller or wheelchair. Having an immobile toddler was already a struggle, but now Katie must juggle a thousand small things just to function in day-to-day life. Accessibility and discomfort in public have been a huge headache for their family. Not being able to easily run to the store, take her children to the park, or simply enjoy a family meal at a restaurant has fueled Katie to seek change. Why should her family not be able to experience life the same way the rest of the world?
The scope of AB+Me has changed and now Katie is using this platform to launch a campaign for awareness and inclusion. As mothers, we all want to give our kids the best childhood possible- full of love, happiness, and amazing experiences. Children with disabilities and their families have enough on their plate without having to fight just to experience the simple joys of family life. Here at Amateur Super Mom, awareness and inclusion are at the forefront of our goals. Using #normalizedisabilities, we encourage everyone to be a voice for these children. From increasing the public’s understanding of disabilities and showing that these children are children as any other, we can stop the discrimination, stop the alienation, and start building a world of inclusion where all children can thrive.
More From Katie on her Campaign to Normalize Disabilities
What made you want to start your awareness & inclusion campaign?
Before I had Annebelle I was oblivious to what life for special-needs kids was like, I didn’t think about how important accessibility was. The problems that these kids face weren’t even on my radar. I want my daughter to have as normal a life as possible. I want her to be able to go to the park and play, take her to the movies without worrying how accessible the facility is, take her to school without worrying about other kids picking on her. The truth is, people aren’t going to rally behind people with disabilities and make sure that they get what they need, because most people aren’t exposed to people with disabilities very often. I want to show people how important these things are and why inclusion is necessary- put our issues in front of them. Not only so they can help fight for them, but so they know they need to be fought for.
Why is inclusion so important?
Kids with disabilities are just like any other kids. They want to play and have friends and be accepted. Annie might play and move differently than other toddlers but that doesn’t mean she doesn’t play and doesn’t want to have friends. She has physical disabilities that alter the way she functions but that shouldn’t exclude her from being in a mainstream classroom, playing on the playground with everyone else, going on field trips, and being invited to playdates.
Where are you seeing a lack of awareness/inclusion?
I think a lot of the lack of awareness is simply due to not being exposed to people with disabilities. Annebelle often encounters other kids that stare at her, almost all of them ask why she has a walker/wheelchair or why she can’t talk or what her leg braces are for. I hope that one day people look at people with disabilities as “normal” and will just see an adorable little girl. Once Annebelle starts kindergarten, I hope to do what we can to teach the kids at her school about cerebral palsy and other disabilities and show them that she is just like them- she just needs a little help.
What can we all do to help normalize disabilities?
There are lot of things to do to help normalize disabilities!
No one likes to be stared at or talked about. If you see a child at the store with a disability go say hi! Talk to them like you’d talk to anyone else- ask them how their day is going or how old they are, ask them if they’re in school and how they like it. If your child comes up and asks me what is wrong with Annie, don’t scold them and walk away. Kids are naturally curious and that’s okay! Teach them the proper way to approach the subject and teach them that everyone is different. Just like some of their friends have different skin tones or speak a different language, some kids need wheelchairs or leg braces. Teach your child to come up and say hi and treat her like any other kid. Its okay to for them to come up and say “That’s a cool wheelchair! Why do you need to use it?”
We understand that people are curious but were also just like every other family and don’t want to be bombarded with people who talk to us only to find out what Annie’s diagnosis is. When approaching someone with a disability remember to respect their boundaries, some people are happy to share their story but other want to be treated like everyone else and not loaded with questions every time they leave the house.
What resources are available to those with disabilities and their families?
Most families are set up with Early Intervention- state funded therapy services to make sure families get a head start right after diagnosis. There are also organizations that help people with specific disabilities (such as United Cerebral Palsy and Child Neurology Foundation) and online support groups. These services are great, but sometimes moms of special-needs children just need someone to talk to- to chat, vent, ask questions. I know that I do! Because of this, I have decided to partner with Amateur Super Mom and Dr. Zoe Shaw in starting a Special-Needs Family Support Group. Our support group is here to help you connect with other families with similar struggles/hardships/diagnoses and just be moms!
Take the Amateur Super Mom Pledge to learn more ways you can help create a more inclusive and less judgmental environment for mothers and their families to thrive… and to make a commitment to yourself and your family!