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

My sister and I grew up in an amazing home. We have an older brother and a mom and dad who, my mentor would say, “forgot to tell us we were handicapped.”

Looking back now, I can attribute that to the choices our parents made to foster within us senses of worth, awareness and ingenuity. When I asked mom and dad about these choices, they shared with me some keys to their methods of raising kids with disabilities. Here are a few tips from their perspective:

1. Not All Danger Is Bad: Adventure is life-giving to kids. Scraped knees and broken arms teach them not only their limitations, but their abilities too. For a child with weak lungs, feeble limbs, or a wheelchair, this will look different from other kids. My brother climbed a tree and jumped in an attempt to fly. I couldn’t do that, but I could circle the roller rink with thirty other people a lot bigger and faster than me, and I could play soccer with my running friends on a bumpy Carolina field. There are foolish dangers, like driving your chair into a pond, and then there are dangers that come naturally with living life to the fullest. The latter should be allowed, and as parents, you will need to accept that your child might get hurt but they’ll grow as a person and ultimately be the better for it.
2. Let Them Feel Deeply: Growing up is hard in its own right, but then compounding it with a disability makes for a childhood of unbelievable dynamics that many able-bodied adults may never face. Special friendships and broken hearts, cool gadgets and surprise surgeries. It’s a lot to take in. Kids have a profound capacity to feel. They should learn how, and be allowed, to handle those ocean waves of joy, sorrow, love, anger, confusion, etc. As they encounter the world around them, the good and the bad of it, their hearts are tender to the impression it makes. Don’t shelter them from this, but come alongside to help them step into these thoughts and feelings, and navigate such experiences properly to come out on the other end with a healthier, fuller spirit.
3. Rebellion Is Not Their Disability: Discipline is important for a child learning how to interact with the world. It clarifies boundaries, which at an early age we test to understand. I learned early on that I can’t backtalk my mom or disobey my dad. I’m in a wheelchair, which means I am an exception to some rules, like extended time on exams or having someone else do my laundry, but I’m not exempt from respecting my fellow man and observing the law of the land.

So much of who we grow up to be is derived from the people who raise us, the world they shape around us, and the ways they help us navigate through that world.

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.

Raising children with disabilities looks an awful lot like raising able-bodied children. At least, it can with the right tools and mindset. My parents raised three children, and two of us have SMA Type 2. They made important decisions daily to help navigate our interactions with the world around us.

In follow-up to my previous article, here are a few more tips from my mom and dad sharing their perspective on how they raised children with disabilities.

1. Open Door Policies: An open heart is vital for you and your child to survive. Get your family out into the community and have people in your home, too. This breaks down the walls that come up when people don’t understand your family’s circumstances. Letting people into your world can hurt, but it can also be rewarding in the most beautiful ways you wouldn’t expect. We were not meant to carry burdens on our own, nor to celebrate without a party. This will help you to have support, and it will help your child to experience community, how to foster and engage it alike, which will prove invaluable as they set out on their own later in life.
2. Relatable Moral Support: Not only is it important to assimilate your family into everyday community experiences, but on top of that, find a few other families with comparable challenges to your own. This will help you, your spouse and children all feel a better sense that you’re not alone in this different kind of life. Interacting with the outside world is paramount, but you also just need, sometimes, to hear someone say, “I get it.”
3. There’s Always Another Way: As your family runs into obstacles, take advantage of these opportunities to foster innovation, creativity, and flexibility by example. I heard a story recently of a family who uses this motto, “There’s always another way!” If you and your family have dreams that seem impossible, work together and think outside the box to find a way. Traveling, picnicking, camping, whatever it may be, it will be encouraging to you, your children, and those around you to accomplish it in your own unique way. And it may be difficult, or take a lot of time and trial and error, but your family is worth figuring it out for, aren’t they? Growing up, my family found the wildest solutions to the weirdest dreams, and now as an adult, I travel the world in a backpack carried by my friends!

Do you want them to be free, to have friends, see the world, be a writer, lawyer, scientist, spouse, parent, contribute to society, change the world? At the end of the day, the most important thing is for them to know you love them, and these steps can help in the details of what that looks like.

During our speaking engagements at elementary schools across the country, a common question we get asked by inquisitive, young minds is: “What do you do if your house has steps?”

We don’t need to belabor an obvious fact – accessible housing is rare and difficult to find – but as Hannah and I have just purchased our first home together, we wanted to discuss a few of our observations (and tips!) from throughout this experience.

A frustrating part for me was that I couldn’t accompany Hannah to many of the open houses, due to inaccessibility. We entered the home-buying process with the assumption that at least some adaptations would need to be made to make our future home accessible, so we didn’t limit ourselves by only seeing perfectly accessible houses. The unfortunate effect of this decision was that we looked at many places with 3+ steps at every entrance.

We counteracted this issue in several ways. Sometimes, Hannah would attend the showing by herself (or with her mom!). Hannah made sure to take lots of photos and videos so she could share them with me afterwards. Another option was to have our real estate agent do a “virtual” tour for us. Using a video call on his phone, our agent walked through every room while we watched from the comfort of our apartment. With his video tour and his tips about the pros and cons of every room, it was just like doing an open house in person.

If possible, I’d also bring along my portable ramp to get inside as many of the prospective homes as I could. I enjoyed this method the best, but all three options gave us a great sense of our choices.

With a disease like SMA, requirements for a home are obviously going to vary from person to person, but here are some of the things we asked about and paid attention to when picking our first home:

• How much work needs to be done to make the front entrance accessible?
• If there’s a basement, is it a walkout or would we need to install an elevator/lift inside the home?
• We generally looked only at one-level homes. Multiple floors just mean a lot more work needs to be done to make it accessible.
• Were the rooms and doorways spacious enough to maneuver my wheelchair easily? In our first apartment, the hallway to our bedroom was so narrow that I scraped the doorway pretty much every time I entered it, which created a lovely, shrill screeching sound. Sorry neighbors!
• Since Hannah lifts me onto the toilet and into the shower right now, we paid close attention to the layout of the bathroom.
• An attached garage was pretty much a necessity for us, living in Minnesota where it snows 11 months of the years (at least it feels like). In the home that we eventually purchased, I can drive from inside our house into the garage and right into our van without ever going outside. In no small way, this feature is helping to keep me healthy, as I no longer need to spend time in the frigid cold/ice/snow getting into my van.
• Does it have a fireplace? This one has nothing to do with accessibility. I just really wanted a fireplace.

Finding your voice when you live in a world that tries to speak for you can be tricky. It took me years of life experience to realize I could use my voice to express my feelings as a disabled teen / adult living with SMA to cultivate understanding and friendships. When I found that voice, I never looked back.

I think everyone would be surprised to know that I wasn’t always as outspoken as I am now. Don’t get me wrong … I’ve always been a feisty and passionate person, but I didn’t start really expressing my feelings about my disability until I started publicly sharing my life on social media.

My strategy for creating a supportive environment when I was a teen versus now is vastly different. I think the main difference can be summed up in one thing we all (mostly) gain as we age: maturity.

My teen self was always in survival mode. Growing up with a disability is the most challenging thing I’ve ever experienced. We’re all just trying to fit in, be cool, and express our inner pent-up teen hormonal imbalances, which is just as complicated as it sounds. With that being said, I cultivated my own sense of inclusion and social life by letting my personality shine. I focused a lot on my hair, makeup, and fashion as well — because that’s what other teens could relate to. I was also a rebel. I found solace in my newly acquired disabled rebel high schooler status. When have you ever heard of that, a disabled rebel? I took pleasure in breaking stereotypes and expectations people had of me because I have SMA.

Teen logic is quite interesting. Let’s break it down: disabled me + skipping class + wearing a rebel outfit = friends. Don’t ask… that’s just the way it works… or how it worked for me.

When meeting someone new, I do carry some of my teen strategies along in my “educate an abled” handbag whenever I need to break those out. A little swear word or winged eyeliner goes a long way with creating a socially accepting environment, believe it or not.

I still use fashion and makeup to let my inner personality shine on the outside. However, now that I’m an adult, I find that talking about internalized ableism and my disability with my support network makes me feel like those things matter. It also makes my support network more in tune with my experiences as a disabled adult, which helps them be able to support me that much more. I’m not as shy when talking about why I eat slower or why I douse my chicken nuggets in ranch so they can slide down my weak SMA throat easier. Those are things I would try to hide as a teen, to make my disability more palatable for others.

The abled-gaze (how able-bodied people view disability) is something I tried to appeal to my entire life. I tried to come off as less SMA than I really am. By doing that I was only hurting myself and distancing myself from who I am which made it hard to create a supportive network.

Don’t try and become more palatable to please people around you. Being you is so much more freeing.

I can’t remember when I realized that, more than anything, I wanted to be a writer. Like most things, it dawned slowly. As a child, I loved stories. My dad and I spent hours in an oversized, weathered rocker, with dark blue fabric that felt somewhat like a cross between velvet and corduroy. We lost entire days to reading about different people and different worlds.

I now know that stories were a refuge to my eight-year-old self. She found something in stories that she couldn’t find in the real world. First, it was the sprawling hills of a childhood favorite. Then it was the adventure and thrill of finding a long-lost repository of gold and knowledge. Then it was the wonder of space.

The psychoanalyst in me realizes that, as a young, disabled girl, part of me was yearning for another life. A different one, with a body that worked right, a body that wasn’t constantly trying to sabotage itself. But the counselor in me knows that, really, it wasn’t that I wanted to escape my reality.

It was that I wanted to see myself in theirs.

I was a writer in a world that denied me my own existence. There were no disabled girls in my Saturday morning cartoons. There were no disabled girls on the big screen, fighting the bad guys for the greater good. There were no disabled girls in the background of adventure movies and cult classics. There were no disabled girls in princess movies, even when media executives went out of their way to show that, look, anyone can be a princess! Yes, even you!

We don’t go to prom. The Force isn’t with us. And we certainly don’t steal significant historical documents.

But that’s a narrative. And a false one at that. Disabled girls are everywhere. We go to concerts and poetry readings and midnight premieres. We climb mountains and write papers and sometimes, if we’re really, really lucky, we find someone who will take our wild dreams in stride—even the ones that have to do with significant historical documents. We fall in love. We have families. We stare at the sky and feel, for one blinding moment, that we, too, are made of stardust. We rage and cry and, at the end of the day, we pick ourselves up and do it all over again.

Someone is listening. Someone needs your poem, or your app, or even just your laugh. The real challenge is convincing yourself that, just like everyone else, you deserve the world, and whatever lies beyond.

From one disabled girl to another? You do.

We navigate life as an interabled family in a moment-by-moment way.

We do what we can, when we can; but, more often than not, we choose fewer activities and fewer people. This forces us to be deliberate and be intentional with whom and how we spend our time.

We spend time with people who recognize our life runs at a different pace. People who consider accommodations so our disabled son, Asher, can be included in activities. People who are willing to help when things are hard. These are the people who won’t be bothered by coming to our house instead of a park when it’s the best accessible option. These are the people who will swing by on a moment’s notice to pick up our daughters, so they are not stuck at home when their brother is sick. These are the people who understand we can’t always do it on our own, and they are willing to be our village.

Our family ebbs and flows based on Asher’s health. When he is doing well, we are full steam ahead. This is when we register the children for a special activity in the community, we take a spontaneous family trip or we try something new. When Asher gets sick, everything slows down, sometimes to a standstill. We try to divide and conquer when possible to maintain activities for our daughters, but at the same time, we’ve learned that slowing down is a team effort, and as a family, we are in it together.

Activities often require a delicate balancing act. Asher usually needs modifications or extra assistance to participate in activities. Many times, his sisters want to do things that their brother can’t do. In spite of these challenges, we often celebrate our parental victories when we make the impossible possible. But there are times we help our children understand our limitations or their limitations literally make some things impossible to do. Limitations are hard for children to accept, but it helps to reframe their mindset to think about all the times and ways they have and will push past the immediate limitation.

It’s not always easy to tell how our children are navigating through our interabled family life. We catch glimpses that show us they are doing just fine. Like the moment at a friend’s house when Asher’s sister pushes chairs out of the way to make room for his wheelchair. Or the moment Asher celebrates his sister’s accomplishment for something that he will never be able to do himself. These moments help our hearts rest a little easier. But it’s when we are sitting around the dinner table telling jokes or snuggled up in bed watching a family movie that we know the simplest and sweetest moments are the keys to their hearts – no matter what life they are navigating.

Picture someone wrapping you in yellow caution tape, but the tape didn’t just say “CAUTION” in big bold letters – it was followed by “DISABILITY IS UGLY.”

This conditioned and toxic way of thinking was the mental space where my body image existed, although I never told anybody that. Why would I? There was nothing I could do to “fix” my body. I couldn’t go to the gym and sprout abs after having a protruded SMA belly. I couldn’t tone my atrophied arms and legs. There was no use in discussing it because my fate was to inevitably succumb to the fact that my body wasn’t appealing and never would be.

These sentiments were reinforced by the media and lack of representation of disabled bodies portrayed in a sexy way, anywhere. I’ve been taught to think that my body is broken and doesn’t work. I’ve been taught that I need to be fixed. I’ve been taught that my body curves in ways it shouldn’t, which means it inherently isn’t sexy. I’ve been taught that disability isn’t sexy because I’ve never seen a disabled person in a lingerie ad or in a teen heartthrob-type movie. The only way I ever saw disability portrayed in the media was as inspirational – the type of inspirational that only exists to soothe able-bodied people’s insecurities about themselves. Essentially, using disability as a vehicle to make themselves feel better at our expense. Gross. But, that all shifted as I started searching for answers.

When I decided to start sharing my story on social media, it consisted of my basic life narrative – showcasing how I live with SMA by showing people that my life might look a little different, but I’m still a human being just like everyone else. Looking back, it started out very natural and innocent. As I started diving into self-advocacy and hearing from other disabled activists on a myriad of different topics, one caught my eye and changed my life.

What I saw hit me like a ton of bricks. But not in a bad way – more in an “oh my God, where has this been all my life?” way. It was a post that included a picture of a disabled person in their underwear, owning their disabled body in a way I had never seen before. I knew I had to find out more. I read their post, along with their photo, and felt each little hair on my arm stand up as my mind started racing. They talked about how disabled bodies deserve to be represented in a sexy way and that they are NOT broken. They are whole… they don’t need to be fixed to be seen as sexy, because “pretty” and “ugly” are not real. They’re ideas that we are taught.

That’s what I began doing, one sexy disabled body photo at a time. I posted these photos with a newfound respect and love for my disabled curves that weren’t ugly, like I had always thought. They were unique – just like everyone else’s body.

I made it my mission to teach all my followers my life-changing revelation: different is not ugly.

Many of us living with SMA can identify with a recurring pattern of thought that I have named my “Burden Complex.” It’s an idea that I’ve written about at length, but I believe it’s such a common part of growing up with SMA that it’s worth mentioning again.

I felt like I was bothering people. I felt like I needed to minimize my needs in order to be less of a burden to my loved ones around me. It wasn’t a constant feeling, but it was certainly hard to deal with when it did arise. These challenging emotions caused me to repeat a similar phrase when asking for help, “I’m sorry, but…”

“I’m sorry, but could I have another sip of my drink?”

“I’m sorry, but could I use the bathroom?”

My apologies were often met with the same reaction. My loved ones or friends would say, “You don’t need to be sorry, I’m happy to help!” Still, this constant reassurance did very little to alleviate my burdensome feelings.

It wasn’t until I met (and fell madly in love with) my fiancée, Hannah, that I was able to truly say goodbye to saying sorry. With a seemingly simple question, Hannah helped me better understand my Burden Complex, and thus, move on from it.

The conversation went something like this…

“Hey Hannah, sorry but can you grab me a snack?”

“Sure, my handsome and intelligent and funny Shane, but you don’t need to apologize. You know I love helping you.”

“I know, but what if you’re just saying that because it would be mean not to say it?” (This was a classic way that my Burden Complex would negate the reassurances from others.)

“Do you enjoy being my boyfriend?”

“What? Yes, obviously.”

“But what if you’re just saying that to be nice?”

“Of course I’m not! I love you!”

“Do you see how that feels? To be questioned about something that you obviously mean whole-heartedly?”

This is obviously a simplification of a healing process that takes time. Even today, I have moments where I catch myself thinking of myself as a burden. But by stopping myself from apologizing for every request and reminding myself that loved ones have no reason to lie about their willingness to help me, I’ve made great progress in seeing myself and my needs in a healthier way.

In life, bad days are inevitable.

When you live with SMA, just getting through the day can feel like an impossible task. Sometimes, just eating and watching a movie are my only accomplishments of the day, and that’s okay.

We have all this pressure on us to accomplish and “achieve” things in an unrealistic timeframe that doesn’t acknowledge everyone’s unique lives. Everyone should live their life at a pace that’s suitable to their specific needs, goals and aspirations. Even if we do that and respect our boundaries and disability fatigue — SMA can throw a lot of other unexpected curveballs our way, and I’m no stranger to the curveballs of SMA.

There’s unexpected sickness that can stop your life right in the middle of the train tracks. There’s the back and forth to try to get a new wheelchair or medical equipment approved. There are social aspects, like combating ableism all while trying to balance having a healthy social life. There’s internalized ableism and mental health you need to manage. Sometimes, it can all seem very daunting.

Having lived for 26 years and counting, I learned how to catch those curveballs.

I know this metaphor example uses rock climbing and I can’t walk, which makes for the perfect amount of irony, so stick with me.

When you rock climb, it can be really scary at first and the unknown is waiting for you at the top. You might slip and fall on your journey to the top — you might even scrape your knee. But you get up and try again, even if you fall down multiple times. You must keep going. Finally, the moment is here, the part where you reach the top. You remember each step and how much anguish you were in as you took those last few steps to get to the top.

You stand (or sit) at the top… your long hard journey has brought you here and the view is great. You feel the sun shine on your face and remember that the journey of life isn’t always easy, but it’s always worth it in the end.