Topic: Work

Kevan

Creativity and disability
(part 1)

I have been writing books for the better part of ten years now, and before that I played in a band. Having SMA, I’ve always caught people off guard with my subject matter.

“It’s been an uphill battle to sing and write about anything but disabilities.”

There is nothing wrong with creating material related to disability, but as an artist, I personally had other things I identified with and wanted to talk about in my avenues of creativity.

My band sang songs and made references to movies, literature, other bands, our short attention spans, and our inability to get girlfriends. It baffled our audiences that we didn’t talk more about the elephant in the room: my wheelchair, whether for awareness or humor. But we were college kids with other things on our minds... like pizza.

When I started writing books, I wanted to tell stories about pirates, time travelers, and zombies. I would include characters with disabilities, because they fit the narrative, but they weren’t the focus. And most folks who read those books said, “These are great, but what about more on the guy in the wheelchair? I want to hear more about him!”

These are tensions faced by every artist, regardless of whether or not they have a disability. It’s hard for most of the world to see past your sore thumb.

“There is so much more to you than a 400 lb wheelchair, and those other parts of you need outlets, too.”

As an artist (of whatever medium), I encourage you to push through. Get creative with how you navigate creativity. A common joke in filmmaking is that you make a film for you and then a film for “them,” meaning there are times when you take creative license to make what you want and times when you give in to make what is expected of you by others. Strike a balance between the two, which might involve striking a balance between your pride and humility, or your freedom and discipline.

“Art is definitely expression, but it’s also a sharing of experience, so it’s a wrestling match of being for you and others.”

Two years ago, I finally published a memoir of my life with SMA, and have received quite a bit of attention for it. I’ve been glad, as I grow in my craft, to share such a story, but I’m also now navigating how to not get “pigeonholed” as a disabled writer.

In the following two articles, we will explore both routes: producing creative material related to your disability, and producing creative material unrelated to your disability. Doing both is possible, and I would actually suggest it, but ultimately, the aforementioned balance is yours to establish with yourself and your audience. And whatever that balance ends up looking like for you, always strive to be honest in your expressions and endeavors.

Amanda & Jeremy

Nurturing your child's dreams

Asher was infatuated with superheroes when he was little. He could not get enough of superhero action figures or costumes and his affection grew tremendously when he met a “real life” superhero at a local event. Asher was only four years old when he enthusiastically and confidently stated, “A superhero is going to be at my birthday party.”

“And so it began, the parent journey of helping our little human realize his big dreams.”

A most memorable six-year-old life-sized dream came true when we took Asher and his sisters roller-skating. We knew our girls could physically skate, but Asher had never walked independently, let alone rolled on skates. That day at the roller-skating rink, Asher did not sit on the sidelines or sit in his wheelchair because he had bigger plans. So, with a lot of help from the business owner and a lot of muscle power from dad, Asher literally skated.

Recently, we watched a show where a main character was announced valedictorian. Asher, now almost eight years old, immediately asked what it meant to be a valedictorian. When the word was defined for him, he said without hesitation, “I want to be a valedictorian.” To which I replied, “I bet you will be, buddy.”

The same way we figured out how to bring a superhero to Asher’s birthday party, or how to help Asher skate, we will figure out how to help Asher become the valedictorian he wants to be.

“We will figure it out together, with encouragement and love.”

And we will welcome those who come along, like that business owner or that “real life” superhero, to help us make Asher’s dreams come true, one dream at a time.

Kevan

Creativity and disability
(part 2)

I remember sitting in a friend’s kitchen a few years ago, talking with him about my future. I saw myself as a writer and wanted to have a go of it as a career. By that time, I’d written a handful of novels, and was in search of opportunities to speak. Sitting at that kitchen table, my friend gently said to me, “You have a story to tell, Kevan. It’s right in front of you.” He had been close to my parents since before I was born. He had walked with our family through my diagnosis, and every hill and valley since then.

“He saw my story better than I could see it myself.”

Up to that point in my life, I would get so annoyed when people suggested I tell my story of life with SMA. I wanted to be known for my talents, not my disability, and turning the spotlight on it seemed like giving up in that fight. Even when that friend said it, I bucked a bit, but he was right. He wasn’t telling me to sell out. He was pointing out that for all my efforts to share deep things with the world, I had my most profound story sitting right there in my lap the whole time and had adamantly chosen to ignore it.

But I still had a hitch in this proposal. Everyone wanted me to share about my life with disability, but I had trouble finding the best angle for it, the right voice, the driving narrative. That’s when my friends and I did something ridiculous. We decided to leave my wheelchair home, head to Europe, and just see how it went.

“Suddenly, and actually without meaning to, I had a very clear story to tell, and a starting point from which to launch the bigger story of my life with disability.”

I know not everyone reading this is a writer or musician. But the principles remain because, ultimately, it’s all storytelling. As we pursue our various creative endeavors as people with disabilities, let us keep a few things in mind:

  1. Be sure you have a story, something poignant for people to pay attention to. Don’t just go around shouting, “Listen to me because I have a disease!” That is literally everyone’s story (we’re all disabled somehow), so find your unique angle.
  2. Be aware of your audience’s needs and interests in the details of your story. Art is a conversation, so exercise that. Only spend time on how you tie your shoelaces if that’s something your audience wants to know. Ask. They’ll tell you.
  3. Be tasteful in two ways. First, how explicitly you tell your story (varies by audience, refer to #1). Second, don’t beat a dead horse. Share your story, don’t preach guilt or pity. There’s enough of that in the world already.

Have fun!

Alex

Finding my why

2020 was hard on all of us.

The pandemic.
The fear.
The new lives we’re living.

For disabled people, the pandemic is reaffirming embedded ableist views in our society. It weighs heavy on my mental health, as I’m sure it does for the entire disability community.

I’ve always approached life with a “can-do” attitude. I told myself that my disability and society’s ignorance about disability would not stop me from living the life I want to live.

“I can’t control others, but I can control myself.”

My feelings.
My life.

I think this rings true, especially during the pandemic and this time of uncertainty that we are all experiencing.

To keep my mind on track and continue on the journey I’m on of living my best life, I find ways to remind myself of the good.

I follow writers and creators who inspire me with their words. I find solace in relatability and human interaction. The innate human need to connect with others and feel seen is something we all desire. Even if they aren’t disabled, I can relate to their stories and that human connection keeps me grounded.

Another thing I do to keep myself grounded amid the chaos of living a life with a disability--where something can change at the drop of a hat--is to pursue what inspires me. To create. I can’t tell you how many screenshots I have on my phone of things I come across while mindlessly scrolling that inspires me to create something, write something, or do something new.

“What I have to give back is my creativity.”

In college, I studied rehabilitation services. In short, that involves working with people who have disabilities and providing education and services to help them live independent lives, in order to arm our clients with the knowledge to be successful – however they define success. This job gave me purpose. It gave me a creative outlet to give back to my community.

I find having a network of people who are supporting me and being able to use my creativity as an emotional outlet is what keeps me sane.

Life is messy, and disability is not excluded. If anything, disability makes life more messy.

My grandmother always used to say, “A dirty kid is a happy kid.” I found it to be extremely true, even in my adulthood.

Life is messy, whether figuratively or literally, and that’s the best part. We never know what to expect. And this has been a year of the unexpected.

We are growing, learning and evolving.

Resilience comes in many forms, but I think finding what brings it out within oneself is what the best part of the journey is. For me, this was finding my purpose, my job, where I can help others.

“Finding my purpose gave me a ‘why.’ Having a why means everything to me.”

Kevan

Creativity and disability
(part 3)

Ever since I could form words, I have been telling stories. It is my great passion in life. After college, a friend gave me a novel by a German cartoonist who pretty much broke all the rules of conventional storytelling.

“I remember sitting at my desk, reading this weird book, and I felt the author say to me, ‘You should share your stories with the world, too.’”

That’s when I set out to self-publish my first book, and more followed over the next few years. None of these books had much to do with disability, and it was a constant uphill battle against people’s expectations.

Finally, I wrote a book about my experience with disability and it was picked up by a publisher. I saw this as two opportunities. First, it was certainly a story worth telling and I was happy to do it; second, I was hopeful that it might grow my audience and that audience would then say, “We see your value as a writer. What other stories do you have?” However, the battle continues.

Last summer, I had lunch with a fellow-writer, and we were sharing with one another our latest projects. I told him about the new book I was working on, and mentioned that one of the minor characters was a man with a disability. My friend’s initial response was that I should scrap the rest of the book and refocus my energies on telling that character’s story, with my unique insight on the subject.

I tell you all of this to say that, if you are an artist of any sort with a disability and you don’t want your art to be all about said disability, I understand your desire and I understand your frustration with a world that suggests otherwise. Whether you are a writer, musician, actor, poet, painter, sculptor, basket weaver, whatever, you are more than the disease in your body and your craft has the capacity to express more than the disease in your body, even if a lot of the world is too short-sighted to grasp that.

Every artist deals with this issue of consumers’ expectations.

“Just as you struggle to be seen beyond your disability in your day-to-day, so you will always struggle in the same way with your art.”

But there are people who truly see you—those couple of friends who really get you. And you will find the same to be true with your art. Through the cacophony of people asking about your wheelchair, there will be a voice or two that celebrate your craft simply for what it is. Those couple of voices are more refreshing than you can imagine. If you pay attention to them, you will be revived, inspired, and carried along just fine. So keep an ear out.

Brianna

No one is you and that is
your power

I love all of my art prints, but the one above my desktop monitor has a special place in my heart: “No one is you and that is your power,” usually attributed to singer/songwriter Dave Grohl.

The other day, I was beating myself up over my latest project. The professionals call it imposter syndrome. I was comparing myself to others in my community, writers with book deals and large Twitter followings, feeling like I had nothing to offer. Writing is difficult. Marketing is even harder. Why was I struggling when other people make it look easy? Maybe I wasn’t cut out to be an author after all. Maybe it would be better if I just gave up.

And then I looked up.

No one is you and that is your power.

“I have been carrying stories for a decade, tending to them like I tend to my succulents and house plants.”

Putting them down on paper is hard. I’m sure that publishing them will be equally arduous. But they are still my stories. Mine. And they are bursting at the seams with everything I love, from fairy tales in space to disability representation.

They are not perfect. But they are mine. And therein lies their power. My stories are a curious amalgamation of dreams and experiences. If I do the stories justice and write them well, they won’t look like anyone else’s. They will be flawed and earnest and quintessentially me.

“There is power in that, even if the world—or our inner self talk—says otherwise.”

Khrystal

Advocacy evolved: becoming
your child's best advocate

I’m Khrystal K. Davis, mom of five, including Hunter, who is eight years old with spinal muscular atrophy (SMA) Type 1. I participate in SMA My Way because I believe it’s important to be an empowered advocate as an SMA patient or parent.

“My advocacy for Hunter started at his birth.”

Hunter was delivered via a C-section at 36 weeks. A medical team of 12 filled the operating room. All went well, and Hunter and I went to the recovery room with a nurse, my husband and my mom, who is also a nurse.

Hunter’s health rapidly deteriorated in the recovery room. He began to grunt each time he exhaled. Hunter was my fourth baby, so I knew this wasn’t normal. I asked the nurse to observe, but she didn’t seem concerned. Still, I knew something was wrong. I asked my mom, and she tried to assure me, “I’m sure everything will be okay.” The look on her face was far less reassuring than the words she spoke, and she left the room.

My mom returned, and a medical team from the NICU rushed into the room behind her. They quickly whisked Hunter away to the NICU. His condition continued to worsen, and he required intubation for respiratory failure.

I had to learn to advocate for Hunter from the beginning, but the type of advocacy evolved following his SMA diagnosis at eight weeks of age. I focused my efforts on getting Hunter an appointment with an SMA pulmonologist, an expert and asset in the SMA community, and medical equipment to help maintain his respiratory health. The SMA pulmonologist changed everything for Hunter—we now had a team advocating for him. I learned how to navigate as the captain of that team.

His specialist referred Hunter to speech, physical and occupational therapists, and they too became part of Hunter’s advocacy team. He enjoyed and flourished in his therapy sessions. Together, we secured braces, positioning seats and wheelchairs. Unfortunately, access to what Hunter needed wasn’t guaranteed, and we frequently received insurance denials. The online SMA community was instrumental in helping us overcome the denials. Other parents provided examples of what they’d done, and I modified those documents to address Hunter and his needs. I also began to anticipate potential questions and concerns and started addressing them proactively, rather than reactively. It was great, because I didn’t have to reinvent the wheel each time to help Hunter get what he needed.

I never anticipated the extent to which I would need to advocate for Hunter. Others in the SMA community paved the path to advocacy for me and knew the obstacles we would face. I listened, learned and adjusted my advocacy as needed.

“Becoming Hunter’s best advocate was a collaborative effort and I’m grateful to the SMA community for helping.”

My tip: Look for people who are empathetic to help you get what you need for your child. When someone tells you no or demonstrates an unwillingness to help, move on to another individual. Instead of trying to change a person’s mind, look for the right person to help.

Brianna

Filling the Gaps and
Building a Community