Created together with the community, SMA My Way is a collaboration to support all people impacted by SMA.
Hear from fellow life travelers living with SMA, including authors, entrepreneurs, students, partners and more, and see how they’re approaching life goals and celebrating individuality. Here you’ll find practical tools and empowering connections to help you live your life, your way. Be sure to check back as we continue to develop and expand the program!
Living your life
Learn, grow, and be your best self.
Turn obstacles into opportunities. Make your world more accessible. Creatively pursue your passions.
Hear from Kevan
Five ways to make your world accessible
Bio
I grew up in North Carolina, where every road is long, every hill is steep, and nearly every house has stairs.
The church I grew up in had two levels, both accessible as long as you rounded the property outside. My elementary and middle schools were the same.
And there are ramps, automatic doors, sometimes elevators with buttons you can reach.
Accommodations do exist, and are helpful, but what I find most effective is when my aim to achieve accessibility happens from the inside out.
The following are five interpersonal ways to make your world more accessible.
-
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.
-
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.
-
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 di erent 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.
-
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.
-
Community
Returning to community, it’s not just about your care team, but about your care for them as well.
Relationships grow when both parties pour into it. While you have needs, so does everyone else around you, whether obvious or not. This is your chance to give back, and your care for others may build your community, both in numbers and depth, and thus as you work together, the world becomes more accessible for everyone involved.
Accessibility, in the end, comes from folks putting others first and working together to find creative solutions. This involves thoughtfulnessand sacrifice on both sides of the conversation. But the result is beautiful: a world physically more accessible, but also more loving.
You, being you
Celebrate empowerment and individuality.
Tap into positive thought patterns. Find your voice. Be your own best advocate.
Hear from Alex
Being honest. Being open. Being social.
Hear from Brianna
Finding and loving my voice
Bio
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:
-
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.
-
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.
-
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.
Connections
Create a support network both within and outside of the community.
Find your squad. Enhance connections. Spark a new relationship.
-
Living your life
Learn, grow, and be your best self.
Turn obstacles into opportunities. Make your world more accessible. Creatively pursue your passions.
-
You, being you
Celebrate empowerment and individuality.
Tap into positive thought patterns. Find your voice. Be your own best advocate.
-
Connections
Create a support network both within and outside of the community.
Find your squad. Enhance connections. Spark a new relationship.
Hear from Kevan
Five ways to make your world accessible
Bio
I grew up in North Carolina, where every road is long, every hill is steep, and nearly every house has stairs.
The church I grew up in had two levels, both accessible as long as you rounded the property outside. My elementary and middle schools were the same.
And there are ramps, automatic doors, sometimes elevators with buttons you can reach.
Accommodations do exist, and are helpful, but what I find most effective is when my aim to achieve accessibility happens from the inside out.
The following are five interpersonal ways to make your world more accessible.
-
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.
-
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.
-
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 di erent 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.
-
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.
-
Community
Returning to community, it’s not just about your care team, but about your care for them as well.
Relationships grow when both parties pour into it. While you have needs, so does everyone else around you, whether obvious or not. This is your chance to give back, and your care for others may build your community, both in numbers and depth, and thus as you work together, the world becomes more accessible for everyone involved.
Accessibility, in the end, comes from folks putting others first and working together to find creative solutions. This involves thoughtfulnessand sacrifice on both sides of the conversation. But the result is beautiful: a world physically more accessible, but also more loving.
Hear from Alex
Being honest. Being open. Being social.
Hear from Brianna
Finding and loving my voice
Bio
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:
-
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.
-
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.
-
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.
Hear from Shane and Hannah
Four misperceptions about our relationship
Meet the contributors
Real Talk
We’ll be adding new content and introducing new voices, so check back for more ...