Contributor: Alex

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.

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.

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.

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.”

Alex

Being Honest. Being Open.
Being Social.