Topic: Individuality

Alex

How did you do it?

I get asked this question from almost everyone when they find out I left my home in the suburbs to attend college six hours away from my family.

“To me, it wasn’t a huge obstacle to attend college with a disability—it was my goal that I was going to accomplish.”

For the disability community, going away to college can seem daunting and out of reach. Everyone is different and should do what is best for their situation. But, if you want to go away to college, I’m here to tell you how I did it and some of my own personal tips and tricks!

  • Tip 1: Research your desired college and look into what sort of disability support they offer. Call the college and talk with the disability resource center about your needs and how they can accommodate you, so you can get the full college experience, both academically and socially. Ask about accessibility, if they provide any personal care support and what academic modifications can be made for your learning needs.
  • Tip 2: Get ready for a lot of responsibility. If you decide to go away for college, you won’t have your family there. You’re going to have to manage your daily care, academics, accommodations, doctor appointments, social life, clubs, etc. I suggest getting a planner and getting yourself organized! Possibly adopt a routine so that you can keep your life organized and running smoothly. In college, there’s a lot going on, and you don’t want to get caught in a rut!
  • Tip 3: Communication skills are key! When you have a disability, having good communication skills are essential, especially in regards to managing your needs and care. Be open with your caregivers about how they can best help you thrive and be comfortable while you’re adjusting to life away from home. Be open with your professors about what your needs are while you are in their classroom. Be open with your peers about your needs, and just have fun!

Having the opportunity and privilege to attend college at the Southern Illinois University Carbondale and graduating with a B.S. in rehabilitation counseling changed my life. Not so much the degree, but the experience as a whole. I made forever friends and have made some of the best memories I’ve ever had in my life. Most importantly, I found myself. I learned that I could be successful and live completely on my own.

“Having the autonomy to do that gave me confidence, dignity and passion that led me to where I am today—living a happy and successful life.”

You can do it too, and I hope my tips and tricks help you realize, you can.

Amanda & Jeremy

Supporting siblings:
our personal tips

As a parent, I have finite time to nurture my children. This is true regardless of having a disabled son, who naturally requires more of my time for his physical and medical needs.

“How I nurture each child in my finite time matters; that’s why being intentional is so important.”

It’s difficult to give each child individualized attention when they are often together, but I find expressing my attention in small ways makes a big difference. My middle daughter loves to hold my hand. Even when I’m with all my children, if I ask to hold her hand, she can sense my attention and love directed specifically to her. Although subtle, my simple intentional action is noticed in her little heart.

Individual time for each child is sacred, so the time deserves to be called something special. When I’m out with one of my daughters, I call it a “mommy-daughter date.” Highlighting the one-on-one time with a special name helps my daughter recognize the dedicated time just for her. Even if the time together is short, the impact is eternal in my daughter’s heart.

It’s important that my daughters recognize that their brother also needs to be nurtured and have quality time, beyond what’s necessary for his medical care. Just like them, he gets “mommy-son dates” too. Just like them, there are specific ways I intentionally express attention and love to him.

Being intentional helps me nurture well, regardless of who needs more of my time.

“Sometimes it’s just as simple as quality versus quantity. Giving my best in the little time I have with each of them.”

Kevan

Fostering independence
in your children (part 1)

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.”

“We both have SMA Type 2, but our
lives have been full and wonderful.”

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.

“It’s those daily decisions to be present in the good and bad, and to nurture in your child, by example, the depths and value of life, regardless of disabilities.”

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.

Kevan

Fostering independence
in your children (part 2)

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.

“By this, we grew up learning how to have rich experiences with our communities and each other.”

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!
“Your choices now as a parent will help
shape who your child grows up to be.”

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.

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.

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.”

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.

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.”