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

Brianna

Practicing psychological flexibility in life with SMA

Let's be honest. Life with SMA can feel restrictive. Confining. Imprisoning. You're trapped on a train, and all you can do is let the caboose carry you—even if the tracks are headed somewhere you don't want to go. Sometimes it's a physical constraint: you want to do something, but your body won't let you. Sometimes it's emotional or psychological: you want to do something, but you don't feel capable. Sometimes it's societal: you want to be X, but the world insists that you play the part of Y.

I usually find it's a combination of the three. My body won't cooperate, *and* I don't feel capable, *and* I'm suffocating under the weight of society's understanding of disability. The train is chugging towards a cliff. The doors are locked, the windows boarded up, and someone appears to have sabotaged the engines.

What do you do?

I've been on that train, feeling out of control, more times than I can count. It never gets easier.

“But I have learned to exercise ‘psychological flexibility,’ which is a fancy way of saying that I act in any given situation according to my values.”

But that's the hoity-toity therapist definition. What does psychological flexibility look like in our everyday lives?

I think of it in terms of imagination. Life with SMA can be restrictive. That's just fact. But sometimes we adhere to that fact a little too hard.

“We get so caught up in our ideas of disability that we forget to ask one important question. ‘What if?’”

Years ago, psychologists performed a series of experiments to better understand animal behavior, they repeatedly delivered electric shocks to dogs. Sadly, the dogs who learned they couldn't escape the shocks eventually gave up on escaping altogether. The way out was right in front of them; all they had to do was jump over a barrier. But they had internalized the belief that there was no escape.

This kind of behavior also manifests in humans. Psychologists call it “learned helplessness.”

What if you stop disparaging your body for what it can't do, and instead focus on what it can? What if you choose to believe we're all just making it up as we go along? (This is true, by the way.) What if you stop trying to change society's understanding of disability and put all your energy towards making what you have work for you?

Kevan

Loaded for bear! 5 tips to increase accessibility in your world

Who makes the world accessible? We do! How does that happen? Here are five tips on how to make your world a more accessible place...

  1. Travel in packs: I very rarely go anywhere alone. I’m an extrovert, so I love this! I also can’t really do much on my own, so it works out. I’ve realized the profound need for collaboration to make the world accessible.
  2. Loaded for bear: I’m from the south, where people say, “We’re loaded for bear!” It means being ready for anything. When you’re out and about, be ready for curbs, steps, gravel, grass, oblivious people, so that when you do come across them, you’re not caught off guard. But I’m also talking about a mindset.
  3. Flexible time: So much of accessibility has to do with time. Don’t just allow yourself extra time – actually allow for flexibility of that time. Just roll with it.
  4. It’ll look different: Similar to time, your experiences need to be flexible. It may not look exactly like you dreamed, but how close can you get to the heart of that dream? That’s the beautiful part.
  5. Go for it: The best advice I can give for making the world accessible is to just go out and live in it. The reason places aren’t accessible is because they haven’t needed to be, so go there if you want to, and while you’re there, help find ways to make it accessible.

Kevan

Friendship and caregiving

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.

“That was 16 years ago, and from there on out, it became just part of life and friendship.”

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.
“Friendship and caregiving are not mutually exclusive roles, and I’d even suggest that combining them can lead to wonderful experiences of depth and growth for all involved.”

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

Alex

Accessibility is a right

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.

“Accessibility is a fundamental human need; a human right.”

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.

“Through sharing my own experiences, I hope to culminate an anti-ableist society: a society where disabled folks can have access to everything our peers do.”

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

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

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.