Topic: Work

When I finished my first novel, I knew better than to hope for success. The publishing industry is competitive, especially for marginalized authors who write about their lived experiences. Few writers strike gold on their first completed project.

If you'd asked me at the time, I would have said I was prepared for failure. And I was! But that didn't stop the rejection from hurting. I love everything I write, but that book was especially important to me, as it featured the disability representation I'd wanted since childhood. It was the culmination of a decade of striving — and it went nowhere.

The therapist in me recognizes the shift in mindset as the result of failure. If I hadn't abandoned my book, I wouldn't have questioned my purpose as a writer. I wouldn't have realized that, while writing is difficult, especially in a world that often devalues disabled perspectives, it is also worth it.

I wouldn't have rededicated myself to my craft or written a book that blew my previous one out of the water. Would it have been easier without the failure of rejection? Absolutely. But would it have been as meaningful? Probably not. And that — that's where the magic is.

Lots of people know me as a protective mother. It's not a bad thing. Sometimes, I have to be the mama bear to get things done for my child who lives with medically complex needs. It wasn't until my son Jack turned 6 years old that I realized he could really fend for himself and express his own needs. As his mom, I want to empower him and encourage independence.

Today, Jack is 7 years old and lives with SMA Type 1, as well as mild autism disorder. The combination of SMA and autism didn't allow him to have a voice until he was about 4 years old. Jack has worked so hard to build his voice through help from speech therapy, his educational environment, and our family.

One major takeaway from our conversations is that Jack needs to establish independence early on, so he can be even stronger when he reaches adulthood. So, with the help of our home support system, we are teaching Jack about the power he holds over his own life.

It was about a year ago when my eyes really opened. We were at the hospital, and Jack was being prepped to start an IV infusion. The nurse was looking for a vein on his right arm. Then Jack suddenly told the nurse that the better arm was the left one and to please not use the loud thing. He meant the jtip, which is a needle-free anesthetic and is very loud. Jack does not like the sound of it and sternly voiced his own concerns. It made me so proud to see that he could advocate for himself.

At school, Jack can get emotionally and physically fatigued from the busy school day. He knows that he can simply raise his hand to call his teacher and ask for a break. Often, he needs mental breaks. He's free to roll to the sensory room for a few moments to refresh himself or to have a snack. At home, he will ask for help when he can't reach a toy and is very good at communicating exactly what he wants to eat.

I watch my son live with SMA, and I see it's a daily struggle to get all his basic needs met. He needs help with coughing, showering, toileting, changing his clothes, taking his medications, preparing food, and the list goes on. Before Jack had a voice, we used to do things as a routine, saying it's time to do this or time to do that. I have learned that it's better to encourage him to tell us when he needs something. As a protective mom, I used to think I knew Jack better than he knew himself. The truth is that he really deserves more credit. That's something I learned from my many opportunities engaging with other members of the SMA community.

I volunteer for disability-related organizations because advocacy is important to me. I would not be where I am today without the help of advocates.

When I was a child, I saw my mom stand up for me so many times when there were issues regarding accessibility or being treated fairly. I always saw my mom go out of her way to connect with other parents who had a child with SMA, and I particularly remember my parents always begging me to become pen pals with other kids. Although I witnessed all of this, it wasn't until I turned 18 that I realized I needed to start advocating for myself and connecting with others who have a disability, like me.

If no one stands up for me, I feel like I could fall apart from the frequent circumstances of inequality and negativity I face. For example, someone can talk to me with an unkind tone if I let them, or they can dismiss me as ineligible to squeeze into the school elevator unless I speak up. I can also miss out on opportunities that will help me in the long run, such as physical therapy, which would cause me to lose mobility function if I do not seek the help I need. There can be financial, physical, and certainly emotional categories of mistreatment I can likely endure if I do not advocate for myself. Even worse, I can endure all of these in vain because I did not do a thing about it to help the next disabled person avoid the unique or common situation.

With music and coding as my focus, I come across chances to improve accessibility and inclusion in mostly those realms. Community encompasses various focuses, and I always want to be a part of that.

I have volunteered for decades by fundraising, cold calling for events, writing original music, and performing pro bono. I have recorded audiobooks for the blind and those who benefit from audiobooks. I have volunteered with disabled children, presenting motivational speeches at schools (from elementary to higher education), and at hospitals, businesses, nonprofits, and government organizations. Most recently, I have fought for disability inclusion in the music industry. There are many opportunities to build your community through volunteering and so many ways to help.

I took on leadership roles in an effort to make changes throughout New York City, and I am thankful to know that they have paved the way for more advocacy via the community.

Although it seems simple, each of the above moments is meaningful. I balance difficulties with the knowledge that when I advocate for myself, I am also advocating for others as well. I have learned always to do my best and give as much as I can of myself because I believe my efforts will make a difference.

I have always had an entrepreneurial spirit. As a little kid, I was always collecting, trading, and selling things to make money. In my teenage years, I was the go-to babysitter, and I did some side jobs here and there. I worked as a telemarketer during and after high school, but never pursued a career. Money management and financial independence were some things I learned and valued from a young age. I always knew I wanted to be financially independent, but having spinal muscular atrophy (SMA), I faced some challenges.

Over time, I realized I had some mental roadblocks and some entrepreneurial fears that were standing in the way of my creativity and motivation. I was too concerned about the future and was stalled in my own fixed mindset that SMA made me feel stuck or confined. I knew that being in the present moment and figuring out the root cause of my limiting self-beliefs was the only way I would be able to let go of those fears, be successful, and follow my passions.

I started using social media more and interacting with other people in the SMA community. It was and still is empowering seeing other disabled moms and people with SMA putting themselves out there, traveling, and living their best life. My community was giving me encouragement and support. The fear I had of being my authentic self and pursuing my passions was slowly but surely fading away.

When I had children of my own, the feeling of financial confinement I had always felt, started to flood in even stronger. I wanted to be able to offer my children the best life and experiences that I could. I had dreams and goals for myself and my two children that included buying a wheelchair-accessible van, a house, and taking my kids on trips... all things I strive to do. Before having children, as a single person, decisions were a lot easier but now a choice needed to be made on how I was going to live life with my family.

Motivated by motherhood, I gained the courage to move forward. To not focus on my disability, but instead, use my skills and abilities to build a business that helps other people and moms with disabilities to start and grow their businesses. I love networking and building connections. The relationships I've built with different people have helped me get where I am today with my business and life in general.

If there are a few things I've learned about starting a business or bringing a current business to life, they would be:

1. Have a clear vision.
2. Join or build a community.
3. Decide how to balance work and family life.

Having a clear vision is more important to me than ever. It keeps me motivated to continue doing what I need to do and to get where I want to be. I want to encourage my children as my mother did for me, to have fearless dreams and aspirations. Throughout school and into adulthood, I want them to have inner strength and a strong sense of self. All I can do is continue to love and encourage them and their belief in themselves and be an example.

When I tell people that Céline has SMA, they often say things like, "I'm so sorry, that must be so hard for you." But for me, the truth is that I'm comfortable and happy with the busy life that comes along with being an SMA mom. Of course, when I first got the news, it was an extremely difficult time, to say the least. However, at this point, I have completely accepted Céline's diagnosis and have adjusted.

I don't think about her diagnosis much from day to day. We've made many modifications to our everyday life, but it's second nature at this point. Céline does just about everything a typical child would do (albeit differently), and she fully enjoys life. I love my life as her mom. She is happy, and that makes me happy.

With that said, she does have limitations due to her disability. For the most part, she seems completely unbothered by her constraints, but there are some days that are hard for us. There are days when she falls a lot, and I constantly have to pick her up because she can't get up on her own yet. There are activities that she simply can not do, no matter how much I try to make them accessible. There are times when she is frustrated. And I get frustrated too.

There are also times when I worry about her future. But these are feelings that every parent feels, whether their child has SMA or not. Frustration, confusion and fear are part of parenting. That's the first thing I remind myself when I feel down - that these feelings are a natural part of life that I should not focus on because there is no room in my day, and they do not serve me. Those negative feelings make my job as a mom even harder, and I simply don't have time for them.

I choose to focus on the positive and the possibilities. Usually, I can will my thoughts into a positive space on my own. But sometimes, that's just not enough, and the negative thoughts loom. In those moments, I lean on my support system. For instance, my husband reminds me that we are fortunate enough to be facing SMA in a time where so much more is known about how to manage the disease than in the past. My best friend also assures me that I'm doing a great job and that Céline has come a long way. At times, I turn to my iPhone, where I have an album of Céline's milestones since her diagnosis.

When you're in this journey day in and day out, as I am, it can be hard to see all that we have overcome, and how much has changed. But when I am able to see pictures and videos of Céline through the months and years, it reminds me that she is remarkable.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.