Stories

Shane & Hannah

Home Sweet Home

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 love this question, because it shows that the students are applying our message about accessibility to a centerpiece of their own lives, the house they live in.”

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.
“Buying a home is a stressful process for everyone. We did our best to have fun with it, and to remind ourselves that – stressful as it may have been – it was also exciting!”

Alex

You Are Worth It

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.

“My friends and I bonded because they saw me as something unexpected: a teen just trying to fit in like everyone else.”

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.

“By being who you truly are you let the people in your life one step closer to knowing how to support you best.”

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

Brianna

Finding My Identity in Stories

Brianna smiles in front of white bookshelves filled with colored books.

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!

“It’s hard to find your passion in a world that tries to erase you. It’s hard to find your passion when, most of the time, disabled people are relegated to hospitals and living rooms.”

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.

“The world tries to convince us that, no matter how loud we scream, our stories are swallowed by the void. But that’s a narrative. And a false one at that.”

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.

Amanda & Jeremy

Navigating Life as an
Interabled Family

An interabled family poses for a portrait on sidewalk in front of a brick building.

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

“As parents, we recognize our limitations and that sometimes we can’t do it all, so we don’t try.”

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.

“As parents, we accept that it’s okay to teach our children that they can’t always do everything and yes, in fact, “no” is an answer.”

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.

Alex

Different is Not Ugly

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.”

“Growing up, I let that statement take control of how I viewed my body.”

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.

“Surely, we can retrain our minds to sustain this way of thinking so we can stop hating our bodies.”

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.

Brianna

Filling the Gaps and
Building a Community

Shane & Hannah

Saying Goodbye to Sorry

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.

“My Burden Complex was simple: growing up, from the ages of about 10 to 25, there were times when asking for help from others created a feeling of immense guilt within me.”

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?”

“And just like that, it clicked. I would never lie to Hannah about my feelings towards her, so why would I question her reassurances about my Burden Complex?”

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.

Alex

Catching SMA curveballs

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.

“Catching SMA curveballs is like rock climbing.”

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.

“That’s how I get through hard days living with SMA — being able to look back on my journey and appreciate all the moments in between because nothing good in life ever comes easy.”

Kevan

Debunking Myths Around
Socializing with a Disability

Kevan smiling in a room with wooden floors and tables.

When I’m not traveling, I spend most of my days at my local coffee shop in downtown Fort Wayne, Indiana. Sometimes, it’s bursting at the seams with patrons coming and going and sometimes, I’m the only person there besides the baristas. Over the past six years, I’ve met writers and artists, lawyers, priests, corporate moguls, politicians and touring bands who haven’t showered in three weeks. I’ve met college kids, homeless people, delivery guys, blue collars and nine-to-fivers.

“All the while, I’m the same ol’ Kevan they meet, with SMA and an insatiable love for being with people.”

I get to see the various ways people respond to me socially, and how I respond to them; I get to witness firsthand the many myths about being social with a disability, both externally and internally; and I get to experience the intensive work and immense joy of debunking those various myths. I want to focus, in this article, on two myths in particular, and clarify that these two myths are the result of expectations—and thereby, the mutual responsibilities—of our able-bodied and disabled communities alike.

  1. “All of my friends should help me.” Having a disability is tricky because you have unusually practical needs, they need to be met, and that’s just life. You’re so used to having these needs that finding ways to fulfill them is second nature to you by now. So, why shouldn’t it be second nature to all of your friends, too? A myth that folks with disabilities often fall prey to is that everyone in your life should participate in helping with those needs. And I see how we get there. It makes sense if that’s your everyday life. It’s my everyday life. Folks on the able-bodied side of this conversation fall prey to it, too, and run away at that ominous mountain of expectation. Can you blame them?
  2. “None of my friends should help me.” There’s another end to this issue, which is the assumption that no one can help you, should help you, or even wants to help you. Personal care, food prep, doors and jackets; all of that is your nurse’s job or your parents’ responsibility. Friends are friends, and we expect them to be there just to laugh and watch movies with. What a miserable myth to live under, though. And when this is your mindset, no one knows your needs, so then they assume there’s nothing for them to help with. The relationship remains shallow, stagnant, and unsatisfying for everyone involved.

Rich social experiences come from balancing vulnerability and awareness. Some friends will be closer than others, some will help in ways others won’t, some won’t physically help at all and that’s just fine. Make your needs known tastefully and sensibly as they arise and as those around you seem willing (qualification is another myth we can address later).

“The key is to see people—truly see them—and let the value of your relationship be deeper than whether or not they help you with your wedgie.”

Brianna

Hunger, Desire and
Learning to Be Alive

It took me years to realize that I struggled with mental health.

Looking back, I feel like it should’ve been obvious. There’s anxiety, and then there’s gasping for breath in a waiting room because your doctor mentioned surgery and you’re having trauma flashbacks of anesthesia and bloodwork and life-threatening operations. There’s depression, and then there’s sleeping till 4 p.m., playing video games till 7 a.m., losing entire years to the black pit in your brain.

“There are bad days, and then there’s living with a disability.”

Things changed for the better when I realized, quite suddenly, that I wasn’t just nervous, or sad, going through a tough time. I was anxious. I was depressed. I spent the first 15 years of my life waiting to die. When that didn’t happen, I didn’t know how to live. I didn’t know how to be a disabled person in a world that values the perfect body, with healthy lungs and straight teeth and a correctly shaped skull.

No wonder I was confused. No wonder I felt alone.

In my experience, things start to change when you acknowledge the truth of your situation. Sometimes, most times, the truth is ugly. Many of us are dependent, and lonely, and frustrated with our lives. We want more for ourselves, but we have been conditioned by society to ask for things we know we can get, like pity or discrimination. We don’t dare ask for the big, scary, marvelous things, like dreams or miracles.

Things start to change when you look the truth of yourself in the eye. You are an animal with hunger and desire. You want things—love, and recognition, and chocolate, maybe, if you’re anything like me. You want the world, and your want makes you human.

Humanity is hard to acknowledge. Especially when you grow up in a world that tells you through subliminal messaging and targeted ads that disabled bodies aren’t pretty, disabled people aren’t worthy, disabled _____ aren’t _____. (Fill in the blank. You might be surprised by what comes to mind.) Standing in front of this wide, wondrous world and asking for more, demanding it.

“I don’t blame you for shying away. But I am here to tell you that everything you’ve ever wanted is yours to have. You just need the courage to ask for it.”

People will turn you down. It’s inevitable. And, inevitably, their rejection will sting. But that is part of being human. That is part of being alive.

I could talk for hours about mental health. Meditation (try it), or acceptance and commitment therapy (my counseling framework of choice), or support groups (you never know until you show up). But I know from experience that, once I acknowledged all of the things I’d spent years pretending I didn’t want, life got better. Not because a magical switch was flipped, but because I allowed myself to be, for the first time in a long while, human, with hunger and desire.

I let myself be present.

Kevan

Five Ways to Make Your
World Accessible

I grew up in North Carolina, where every road is long, every hill is steep, and nearly every house has stairs.

The church I grew up in had two levels, both accessible as long as you rounded the property outside. My elementary and middle schools were the same.

And there are ramps, automatic doors, sometimes elevators with buttons you can reach.

“Accommodations do exist, and are helpful, but what I find most effective is when my aim to achieve accessibility happens from the inside out.”

The following are five interpersonal ways to make your world more accessible.

  1. Community
    Having friends and family around you is paramount. A devoted care team to support you, whether two people or twenty, will afford you more freedom to live life without the stress of figuring it out on your own. Suddenly, there’s no need to ask whether there’s an automatic door or if the bus system is up to snuff. You don’t have to order food based solely on whether it needs to be cut up or worry if the handicap row in the movie theater will be available. The possibilities are endless when people work together.
  2. Flexibility
    I have a handful of guys who take turns coming to get me up in the morning. They are all volunteers, which is awesome, but they can do that because they have other jobs, so to enjoy their help, I need to be flexible with their schedules. Some arrive at 6:30 to get me up before work, others come at 9:30 because they worked late the night before.When making plans for my day, I keep it loose and fluid, free to fluctuate my own life according to the lives of those around me.
  3. Ingenuity
    Another aspect to flexibility is ingenuity, looking at an evolving situation and finding ways to change with it.One of my favorite memories with this is when my friends and I used to have a weekly potluck together. It always happened at a different person’s house, so I never knew what I would find by way of accessibility. But my friends and I assessed and worked it out. Sometimes that meant building ramps, sometimes it meant them carrying me in without my wheelchair, but it was always creative, fun, and successful.
  4. Simplicity
    Something I’ve learned and ended up loving is my need to simplify life. Over the years, I’ve become a bit of a minimalist because that means less for me (and thus my care team) to keep track of, physically and mentally, leaving room for what matters most. All my clothes, for example, match (and I don’t have a lot of them), so that whoever’s getting me up in the morning can just grab whatever from the closet.I already have enough legitimate needs to address, why add unnecessary details to the pile? It’s amazing to see how accessible the world becomes when you’re less demanding of it.
  5. Community
    Returning to community, it’s not just about your care team, but about your care for them as well.Relationships grow when both parties pour into it. While you have needs, so does everyone else around you, whether obvious or not. This is your chance to give back, and your care for others may build your community, both in numbers and depth, and thus as you work together, the world becomes more accessible for everyone involved.
“Accessibility, in the end, comes from folks putting others first and working together to find creative solutions. This involves thoughtfulness and sacrifice on both sides of the conversation. But the result is beautiful: a world physically more accessible, but also more loving.”

Brianna

Finding and Loving
My Voice

I was a self-conscious middle schooler when my English teacher asked me to read a short story I’d written at a school event.

I realized halfway through the reading that my audience was comprised of blank faces. No one understood what I had said. The story — something about siblings and ghosts and a tragic car accident — was lost in the glare of the spotlight.

It took me years to get over that incident. I found that, when people talked to me, I no longer had the words, so I stopped talking. I tripped and fell into silence.

But then I went to therapy and worked with a counselor to address my depression. And, perhaps the scariest of all, I told my story. Again, and again, until the memory grew blunt edges.

“With time, I grew to love my voice. There are days of silence and uncertainty and wishing my voice was different — but then I wake up and start again.”

If you’re struggling to find and accept your voice, here’s what I suggest:

  1. Explain your situation
    Nothing changed until I found people who were willing to listen.You might have to repeat yourself a few times, but don’t give up. People might surprise you.
  2. Troubleshoot
    I recently invested in a portable speaker with a microphone that attaches to my wheelchair.It helps to know I don’t have to shout.
  3. Push through the discomfort
    Will you be anxious? Without a doubt!Will people understand you? Maybe! Will it be awkward and uncomfortable? Probably!
“Will you survive anyway? Yes.”

Alex

Being Honest. Being Open.
Being Social.