Topic: Adulting

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 first discovered my passion for music when I was singing songs on the radio at two years old. A few years later, I enrolled in piano lessons, and I thought it was the coolest thing to be able to create music myself. My parents felt that I had a unique ability that many people didn't have.

When I started creating my own songs with my own lyrics, music allowed me to express myself however I wanted to, and that was invaluable. Music would allow people to see me for who I really was, and it became a huge part of my identity going forward. I knew that I didn't feel like myself if I wasn't creating or performing music, so I made music a part of my daily life. I feel whole and complete when I'm writing and performing, and over the years, just by following my passion, others have attached music to my identity. It's a given and it can't be separated from who I am.

Through music, I was introduced to other art forms, and I've learned so much more about myself through multiple methods of creative expression.

For me, music is a form of self-expression - similar to fashion. I also love expressing myself through what I wear, and I've been conscious of my fashion choices since I was in middle school. My introduction to fashion came through basketball shoes. I remember being 12 years old and my grandma buying me a pair of my favorite player's signature shoes. I can still remember the feeling of wearing them to school for the first time and getting so many compliments! I was hooked, and it was at this moment when I realized that I needed to build my outfits around my shoes. Having multiple options for shoes really allowed me to expand my wardrobe and be bold with my choices.

In high school, and even more so in college, I became known for my style. It's a really big part of my identity, and it even helped me display my disability more prominently. When I was first diagnosed with SMA, I wanted to hide from the world. But because I loved being bold with fashion, my outfits would be bright or unconventional, and I felt this brought attention to me. It helped me to become really comfortable in my skin, which made me want to highlight that I walked with a limp because of SMA. I even incorporated accessible elements (that were also stylish) into my clothing.

Along with creating my music, I've cultivated my own style for the majority of my life, and following that passion has played a gigantic part in shaping who I am. It says so much about who I am without me saying a word.

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 Céline was diagnosed with spinal muscular atrophy (SMA), her neurologist told my husband and I that physical therapy could, without a doubt, be beneficial to her. From that day on, we committed to focusing on physical therapy at home and incorporating it into our everyday lives. There are so many aspects of SMA that simply can't be controlled. Committing to doing physical therapy is not one of them. Since we can commit to doing it, I've put a lot of energy there.

I'm not a physical therapist. I'm simply a mom, improvising ways for my disabled daughter to reach her fullest potential physically. I get a lot of questions about Céline's exercise regimen, so thought it might be helpful to share what has worked for us.

In some ways, this role comes naturally. I'm a fitness enthusiast and health nut. Exercise was already a way of life. The real challenge was making this a way of life for a tiny person. Getting a toddler who has a lot of physical challenges and her own agenda to do physical therapy day in and day out is not an easy feat, but Céline is a trooper - and because she has been doing this since she was six months old, it has become a way of life for her, too.

And she frankly won't cooperate if she doesn't like something. In the beginning, the majority of our physical therapy happened during bath time because that time already existed in our schedule, and she's always loved water. Now, bath play has turned into swimming, weight bearing exercises have turned into walking, tummy time has turned into crawling and so on. No matter what particular skill we are working on, I try to make it lighthearted and often provide rewards.

I can not take sole credit for Céline's exercise regimen. It is a team effort. If Céline doesn't cooperate, nothing happens. She is the most important factor in this equation. We work with physical therapists at home and in facilities that help us create short-term and long-term goals and exercises to accomplish them. I keep in touch with other SMA parents and we share tips, tricks and news on the latest equipment. Nothing motivates Céline more than trying to keep up with her peers, which is why she spends a lot of time in school, on the playground and doing extracurricular activities.

Now that Céline is in school, fitting in daily at-home exercise has become a bit more complicated. We generally do physical therapy before school, depending on how the morning is going. On Saturdays and Sundays, Céline does exercise with her nanny, who is a student working toward her degree in physical therapy.

There are days when we simply can't or won't do physical therapy, like holidays, sick days or when we're on vacation. On those days, we sneak in physical therapy in other ways. We might ask Céline to walk instead of using her stroller. On vacation, we may spend extra time in the pool. On rare occasions, we may not do physical therapy at all. However, we all need a break sometimes. But when vacation is over, we're right back to it, refreshed and ready to rock and roll.

I'm Kristen, single mom to one very incredible boy, Jack, who is six years old and lives with spinal muscular atrophy (SMA) type 1. Until you're a parent to a child with a medical condition, it may be hard to know the depth of your strength, determination, and resourcefulness.

I gave birth to the most precious boy, Jack, in August of 2015. I often found myself daydreaming of a life with just my little boy and me. I dreamt about adventures with him at the beach, riding roller coasters, going to soccer practice, and traveling, just the two of us. Jack and I have lived with my parents since his birth. I'm so glad we do, because I didn't know what the future held. When Jack turned a month old, we noticed something different about his body. Our pediatrician also took note of Jack's lack of head control and the changes in the movement of his arms and legs. The next day, we were sent to a neurologist, who immediately thought he had SMA. Two weeks later, Jack received his official SMA type 1 diagnosis.

As SMA started to show in Jack's little body, I quickly realized the power of educating myself. The experienced SMA community shared real-life stories with me and others in my shoes. Virtually, they taught me ways to fit physical therapy and the tips we got into our lives. They told me what toys were best for someone with little movement. I learned how to make our house accessible. The community is a wealth of knowledge and support. I felt strongly that I needed both. I quickly made close bonds with lots of parents; after all, we had so much in common. They have provided so much insight into my motherhood and parenting journey.

As a single parent, I've needed to build a village of family, friends, doctors, nurses, therapists, SMA families, and use online resources. I am so grateful for my parents' help that I have labeled them "co-parents" of Jack. I love them so much, I wouldn't have it any other way.

I've made myself a person of service to the community, which has brought me so much happiness. Community events are my happy place. Just seeing everyone together (SMA-affected, unaffected, parents, family, and friends), it's an emotional experience.

My parenting journey has been all over the place. We went from being told Jack may have a shorter life expectancy to realizing that there is so much hope for those with SMA. I do my best to make sure that Jack is happy and comfortable. I find power in focusing on the things he can do, instead of the things that are difficult. Then finding solutions for things that seem difficult. Jack has been on some scary roller coasters, walked the beach in a hiking backpack, and has been on many vacation adventures. Jack and I even went on our first solo trip earlier this year! So far, we're doing pretty well at accomplishing all the daydreams I used to have and creating new ones.

All lives are special, but I like to think that we are some of the lucky ones. We are lucky to know the value of every single day and every little and big milestone. I get by with a lot of help from my family and friends in the SMA community. How do you get by?

Like every overachieving high schooler, I had dreams of attending a fancy, ivy-covered college, with sprawling libraries and a quad to boot.

It didn't take long for reality to temper my dreams. My college of choice had to be within driving distance of my suburban home. Then there was accessibility to consider, and scholarships, ad infinitum.

My college experience wasn't nearly as sparkly as I'd hoped it would be. While the campus was accessible, the faculty wasn't used to providing accommodations. By the end of day, I was exhausted - physically, mentally, and emotionally.

So, I left.

It wasn't an easy decision. It felt like I was giving up. Like I was disappointing the high schooler in me, who still longed for lecture halls and study dates. I wanted to be like everyone else in my graduating class, with their picture-perfect Instagram profiles. I wanted to be normal.

But I wasn't. I would never be. So I transferred to an online program and never looked back. Time and time again, I see this conundrum in life with SMA. I want things to be a certain way. I grew up expecting things to be a certain way - a certain education, a certain job, a certain house in a certain city with a certain way of going about my day. I pretend, if only for a while, that I am in control of my life.

Then I remember.

It seems that, whenever I learn this lesson, it doesn't take me long to forget it. Years after I transferred schools, I was faced with a similar dilemma: rack up tens of thousands of dollars in tuition so I could get an M.A. that would land me a job I probably wouldn't be able to handle or accept that some things I cannot change.

I cannot change my university's willingness to accommodate disabled folks.

I cannot change my body's ability to withstand a regular work week.

We can spend all our energy trying to make something work - shouting at the world until either it hears us or we lose our voice. We can try to be normal and beat ourselves up over things we can't control.

Or we can try something new.

I don't know about you, but I'd much rather hold life lightly - letting go of certain outcomes, and embracing whatever comes our way, trusting that we can make the best of any less-than-ideal situation.

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.

It can be hard to stay engaged, especially in advocacy work. There's always something vying for our attention, from social media to petitions to our own health and well-being. Burnout is the inevitable result - exhaustion so pervasive that we have no choice but to disengage at times.

This act of disengaging isn't just natural; it's healthy. It allows us to recharge and rejuvenate, so we can show up as our best selves. But sometimes we forget to return. We've grown so accustomed to isolation that we struggle to look beyond our immediate spheres, beyond our own lives.

I see this a lot in the disability community. Life with SMA - or any other rare disease - is difficult. Sometimes, it's all we can do to look after ourselves, let alone someone else. But I push myself to show up.

I get back to the work.

I try to remember that our community is bigger than it seems. For every person in the #DisabledAndCute hashtag, there's someone out there with unmet needs.

Just because I feel seen, doesn't mean that others do.

This is true for the SMA community - people around the world with different life experiences and resources at their disposal. But it's also true for the disability community at large. Invisible illnesses. Ambulatory folks. The list goes on.

Some of us are thriving, and some of us aren't.

We live in a culture of self-advocacy and self-preservation. But countless giants of history, including Theodore Roosevelt, have spoken of courage and “daring greatly” with direct correlation to putting others first. And the funny thing about putting others first, it means you don’t get to be first.

It is, admittedly, a hard pill to swallow. I have trouble with it every day, but I’m thankful for friends and family who are constant examples and inspiration for me to put others before myself.

I’ve been blessed with an amazing community around me, friends who pour into my life and care for my needs any way they can. My buddy Josh gets off a busy third shift job just in time to swing by my house and get me up in the morning. Last year, my neighbor Danny left his wife and kids for a week and flew cross-country with me to attend the wedding of my cousin – someone Danny didn’t know “from Adam.” At my local coffee shop, the baristas are happy to help me in the restroom, and the other patrons meet my needs like it’s just part of their daily caffeine intake.

And I’m asked on a regular basis how I do this, how I build my network or advocate for my needs. But the truth is, I don’t.

It may be cyclical, and kind of a chicken and egg situation, but we care for each other. I listen to them, I hug them and invest in their hearts. I ask how they’re doing and help any way I can to make their lives better. My friends go out of their way to shower me, dress me, travel with me, move a chair or pour my tea for me; they care for me because I care for them. If we put each other first, everyone gets taken care of.

Another aspect of building community is that it happens naturally. My community isn’t my doing alone. I’m just one of the guys, one of our crew, and any of us can invite others into the experience of our friendship. My job in all this is to be present and love those around me, and I too invite others in as they come by. And when it comes to your needs as a person with disabilities, as you spend time with new people, and they see your needs met by others, your needs become normal to them and next thing they (and you) know, they’re helping out too.

So, I’d say don’t worry too much about that side of it. Just love people, and don’t hide your needs, but put theirs before your own. Ultimately, it’s not about how people treat you, but how you treat them. That’s what builds community and changes the world for the better.

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.

Negative thoughts and emotions are a normal part of life and can be a natural consequence of a person's experience. Extreme challenges, such as life-threatening medical conditions with children, can naturally threaten a parent's ability to focus on the good because his or her mind has been redirected to focus on those situations. These experiences can take a toll on mental health, making it difficult to maintain a positive outlook on life. You may be one of those parents who feel thinking positively is as laborious as training for a marathon. And you might be right.

When you're out of shape, it's hard to run a mile, let alone a marathon. You must train to run a mile, so you can run another mile, and then another, until you eventually run a marathon. Consistent training will inevitably improve performance. Likewise, when you train your mind to focus on the good, you can create a positive mindset. A positive mindset is not about wearing rose-colored glasses - it's about training the miles and miles of thoughts in your head to go where you want to be.

A mind's ability to think positively is as varied as a person's physical ability to run. Some people are naturally built to run. These natural runners step on a start line and cruise a mile time that takes others weeks to achieve. Some people can run barefoot or in minimalist shoes, while others need high support shoes. Some runners rarely get injured, while others manage ailment after ailment.

You don't need to compare yourself to others to get better at it. You become incrementally better as you train your mind. As much as it benefits others to be around a more positive you, you are the one who truly profits from being positive.

Training to run often creates a strange love for running. You can also train your mind to push through and work hard, regardless of negative thoughts and emotions. You may find yourself running on a day you told yourself you felt tired or on a day it was raining. And not because you love running, but because you practiced being a badass long enough to know you can do hard things, even when you don't feel like it.

Just as a runner increases his or her threshold to endure running, you can increase your threshold to maintain positive thinking when faced with extreme challenges. When you actively work toward positivity despite your circumstance, your mind has no choice but to follow. This is crucial to keep your mind from going down a sudden, sneaky, scary road not worth racing.

Some of the strongest runners known aren't necessarily the ones who run races; they are the runners who persevered because of their single-mindedness. You can have a mind like the runner who fights the good fight and finishes the course. And you will!

When my daughter Céline ("jelly bean") was diagnosed with SMA, I was warned that I should not expect her to crawl. She wasn't likely to develop the strength for that particular skill within the age-appropriate timeframe. I made it my goal anyway.

Crawling in an essential building block for advancing gross motor skills, especially for a hypotonic (low muscle tone) child, like Céline. I was (and still am) doing physical therapy with her every single day and, while I don't have a degree in physical therapy, I know my child. I felt crawling was within Céline's reach. I could see her slowly but surely gaining the strengh to crawl, so I continued to push her. Even though I knew it was possible that she might not achieve our goal, I knew that doing the work toward the goal could only benefit her.

We worked specifically toward crawling for a year and a half. I challenged Céline daily, but tried not to overdo it to the point of failure or frustration. I also tried to make the process as fun as possible - because, let's be honest, that's the only way to get a toddler to do physical therapy. We found a therapist whose visions aligned with my goals and six months after working together, Céline was crawling.

We parents know our children best! And if there is something that can be done to help them reach a goal, or to make life more accessible, then as parents, we should do our best to support them.

In conjunction with Céline's medical team and my husband, we make decisions that we feel are best for her, even if they do not fit the mold. I cannot stress enough that I take into account Céline's doctors opinions and hold them at a very high regard since they are the experts. But there are certain decisions that only a parent can make.

Now that Céline is three, she is starting to set her own goals, regardless of what ANYONE says.

We are currently working on standing up without support from the floor and walking up the stairs. I'm also learning what it means to have a special needs child in school and that has opened up a whole new door of excitement, fear, uncertainty and, most importantly, advocacy for me.

I wish I could tell you that following your dream will be easy.

I wish I could tell you that life will reward you for following your dream. For showing up, again and again, even when it's hard.

But I can't.

My dream is to write books. Dozens of them, with swoon-worthy romances and hair-raising plot twists. Every story will feature a disabled girl and have, if not a *happy* ending, a narratively satisfying one. Maybe someday I'll hit the bestseller list, but in all honesty, I'd settle for changing a life. For showing disabled girls like me that they can star in their favorite narratives.

Your dream is probably different. Maybe it's falling in love. Maybe it's seeing the world, or having a child, or living on the beach with a cat, a dog, and lots of friends. Maybe it's all three! But at one point or another, you may feel like your dream is unattainable.

Your partner broke up with you.

Your travel agency won't accommodate wheelchair users.

Your book won't sell.

I wish I could say that following your dream gets easier. That, with time, the sting of rejection will fade to nothing. But I can't. Following your dream is *hard*, especially with a life-altering condition like SMA. Taking risks - like signing up for dating apps or moving halfway across the country - will always be scary.

Here's what I can say.

A few years ago, my family and I moved across the country to a lively town of many unknowns: Nashville, Tennessee. As we left our family, childhood friends and familiar surroundings, we were faced with a new scenario and asked ourselves: how do we make adult friends and navigate a new community as an inter-abled couple?

We've come to realize there is a large population of people who have never had friends with disabilities. Because of this, everything in our "normal" scope of life can be new to someone else.

Our hope was to make new friends, show them the fun people we are and truly enjoy our new city like everyone else did.

Making friends as adults has its struggles already, but mix in the unique situations of inaccessible houses, particular dining preferences and different needs, and you could easily find yourself with a "not-so-typical" friendship.

As we were seeking new adult friend groups, we wanted to help people better understand my needs and how I receive support from others (aside from my significant other). As we embarked on this journey of settling in our new community, we had to be very intentional with reaching out to new friends, putting ourselves out there and sticking true to the kind of friends we know we are and were seeking to have.

We love hosting friends, so we would invite new people over for dinners often. Opening your home and family to strangers can be a big jump for some, but we loved it every time. It allowed others to see us in our element. Me as a mom, Jake as the chef and all of us as friendly people. If that seems too personal, meeting for lunch is another option that has worked for us! Worried that they may pick a place that doesn't do well with your food restrictions or spatial needs? Suggest the location!

We decided early on to be open to new things! As we explored a new town with new friends, there were things we found that just didn't work for our situation, like hiking a waterfall. But we took those opportunities to communicate what would work for us, such as camping or outdoor movie nights.

We realized our new friends were not used to viewing life through "accessible or inaccessible lenses" in the beginning - but I can confidently say that has changed!

Life can throw some crazy curveballs, can't it? I remember once getting off a 19-hour flight to a country halfway across the world and receiving news that my wheelchair might have been left at the airport back home. Thankfully, it was just buried under other luggage, but it was a mess for a minute there.

Still, no matter how many systems we put into place or checklists we make, as long as people are involved, there may be unpredictable and uncontrollable variables to deal with. Curveballs.

I've never been much of a baseball person, but my wife is, so I'm learning.

But the point here is that it's not a blanket fact, "swing at all curveballs" or "don't swing at any of them." It all depends on...well, a lot of things. Here are a few factors that I like to consider when that "curveball" is headed my way...

1. Who is the pitcher? There is often a difference between the challenge itself and the challenger (if there is one specifically, though there isn't always). If a person or organization or building or system is putting an obstacle in my way, I consider their authority and/or expertise on the matter. Doctor, pilot, president? Fence, boat, mountain, stairs? Another friend in a wheelchair, a non-disabled friend or family member, a total stranger?
2. What's the curve/speed? Some challenges are manageable and realistic, while others simply are not. For example: stairs. It's one thing to face the challenge of a friend's house with one 2" step vs. the third floor apartment with no elevator. In the latter case, I would maybe meet somewhere else or just leave my wheelchair downstairs and have a friend carry me up.
3. How's your batting? The first two questions kind of go together, and these last three go together as well when considering my situation. I try to consider my own capacity first, and how I might handle the challenge - physically, socially, emotionally.
4. Who's on the bases? Next, think about who is on your team. What are they bringing to the table in this current situation that may help? I've been really blessed to be surrounded by a lot of creative people who are willing to jump in, go with the flow, and come up with out-of-the-box solutions on the spot.
5. What's the hit worth? At the end of the day, I ask myself: is overcoming this challenge a hill worth dying on? How will it affect me, my team, the challenger (if there is one), and the unassuming audience watching?

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.

My dad and I can talk without talking. All I have to do is grunt, or quirk a brow, or wrinkle my nose, and my dad is on his merry way. We often joke that we have spent too much time together. If we can read each other’s mind, something’s got to give, if only to preserve our sanity.

I live in his house. I eat his food and am responsible for probably 50 percent of our household’s electricity bill. Approximately three times a night, he drags himself out of bed to adjust me in my bed. Sometimes he gives me, his grown daughter, a shower.

Our situation is complex, to say the least. It’s infuriating, but also life-giving, and is a relationship that defies categorization. How do you explain to your therapist that, yes, your dad drives you out of your mind, but he is also one of the few things keeping you alive?

Boundaries are a buzzword these days – interpersonal rules, limits or guidelines that keep relationships healthy. Without boundaries, you’re a dog with no leash, digging under fences and crossing roads at peak traffic times. Without boundaries, you will either burn out or get hurt.

Boundaries are crucial in caregiving relationships, especially when your caregiver plays a dual role. Imagine if your best friend from high school was also your professional caregiver. What would you do if they didn’t show up for work one morning? As their friend, you might be tempted to let it slide. But as their “employer,” you expect them to be accountable, dependable, like any other employee. In this scenario, boundaries would delineate what is and is not acceptable. You might say, “I value your friendship, but I expect you to take responsibility for your actions and treat this like any other paying job.”

Now imagine that your best friend and caregiver is also your dad. How do you navigate that conversation?

It’s not easy. I won’t pretend that I’m an expert. But it helps to acknowledge that boundaries are hard, no matter the situation. It will always feel a little bit uncomfortable, like you’re overstepping in some necessary way.

I always seem to have boundary conversations around our dining table. My feet are in my mom’s lap, my dad is sitting to my left, and I’m staring at a half-empty plate of chicken and mashed potatoes. If history is anything to go by, I’m crying and feeling stuck between adolescence and adulthood because I need my parents more than most people my age.