Inspiring stories from those living with SMA, ranging from topics of accessibility, dating, individuality, work and adulting.

Friendships are funny things, aren’t they? We enjoy them and cry over them; we strive for them and wonder how they started; we watch them come and go, some passing quickly and others lasting a lifetime. I have been honored over the years to have a bounty of friends and, somewhere along the line, they started helping me with my caregiving needs. In fact, I can tell you where it started!

In high school, I played in a punk band, and the summer that we graduated, we hit the road on our first out-of-town tour. It was just a long weekend, and there was only room in the van (and our minds) for myself and my band mates, so they decided that they would take care of me. I still remember us all piling into a little bathroom, figuring it out together. And I think that’s how it had to happen for me: just some boys being boys, feeling invincible, acting dumb, and somehow landing on our feet.

Nowadays, I have about 10 guys who rotate through getting me up in the mornings. None of them are medical professionals, none of them get paid to help. They’re all just pitching in to make my life happen because they’re my friends, they care about me, and I am their friend, I care about them. We are mutually pouring into each other’s lives, enriching one another and building one another up in love. As many of you know, this level of care fosters a sense of vulnerability on both sides and can create a deep bond, as well as profound weariness if the process isn’t managed well. The following are three tips on how to navigate the dynamics of friendship and caregiving for better results in both aspects of the relationship...

1. Grace and Forgiveness: People make mistakes, and it’s no different when caregiving is involved. Be slow to anger and quick to assume the best of each other as you navigate these dynamics together.
2. The Balancing Act: Make sure your friendship still has some space outside of caregiving. Have fun, hang out, go see a movie, eat some tacos! No one wants their association to be strictly centered around one giving the other a shower.
3. Care Goes Both Ways: Always remember, you’re caring for one another. It’s a two-way street. No matter how asleep I am in the morning or how badly I need to use the restroom, I have to intentionally start each day by genuinely asking how my friend is doing and then going from there. You absolutely must communicate your needs with each other and prove trustworthy in your mutual responses of care.

It’s hard work, but worthy to be considered.

Navigating a world that wasn’t made to be accessible can be taxing. The extra planning, the coordinating, the calling ahead to see if there’s accessible seating — sometimes it seems like a chore just to go anywhere.

Being denied the opportunity to go out with friends or family because the establishment is not accessible, or not being able to apply for your dream job because the location isn’t accessible.

If you have SMA or a disability, I’m sure you know this all too well.

It can be tough hearing people’s excitement when a place does turn out to be accessible, as if it’s an add-on — something extra.

I’m guilty of feeling “thankful” when a place I went to just happened to be wheelchair accessible. It wasn’t until recently I discovered that the feeling of thankfulness I experienced when I was presented with access stemmed from deep-rooted internalized ableism. This is something we all have to continue to work on, whether we are disabled or not. The work begins with education, awareness and storytelling.

Accessibility is nothing to be thankful for, because it’s a human right.

Yes, accessibility is a human right, not a privilege.

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.