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

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

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

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

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

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.

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.

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.

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

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

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

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

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

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.

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!