Contributor: Kevan

Kevan

Swinging at curveballs

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.

“One thing I’ve noticed is some curveballs you swing at and some you don’t - because some you know (or at least think and hope) you can hit and some are just clearly not hittable.”

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?

Kevan

Building a community by
putting others first

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.

“Instead, you have to trust someone else (maybe one of those “others”) is putting you first before themselves in their own lives.”

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.

“The truth is, it’s not about me, but about everyone else.”

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.

Kevan

Loaded for bear! 5 tips to increase accessibility in your world

Who makes the world accessible? We do! How does that happen? Here are five tips on how to make your world a more accessible place...

  1. Travel in packs: I very rarely go anywhere alone. I’m an extrovert, so I love this! I also can’t really do much on my own, so it works out. I’ve realized the profound need for collaboration to make the world accessible.
  2. Loaded for bear: I’m from the south, where people say, “We’re loaded for bear!” It means being ready for anything. When you’re out and about, be ready for curbs, steps, gravel, grass, oblivious people, so that when you do come across them, you’re not caught off guard. But I’m also talking about a mindset.
  3. Flexible time: So much of accessibility has to do with time. Don’t just allow yourself extra time – actually allow for flexibility of that time. Just roll with it.
  4. It’ll look different: Similar to time, your experiences need to be flexible. It may not look exactly like you dreamed, but how close can you get to the heart of that dream? That’s the beautiful part.
  5. Go for it: The best advice I can give for making the world accessible is to just go out and live in it. The reason places aren’t accessible is because they haven’t needed to be, so go there if you want to, and while you’re there, help find ways to make it accessible.

Kevan

Friendship and caregiving

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.

“That was 16 years ago, and from there on out, it became just part of life and friendship.”

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.
“Friendship and caregiving are not mutually exclusive roles, and I’d even suggest that combining them can lead to wonderful experiences of depth and growth for all involved.”

It’s hard work, but worthy to be considered.

Kevan

Creativity and disability
(part 1)

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.

“It’s been an uphill battle to sing and write about anything but disabilities.”

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.

“There is so much more to you than a 400 lb wheelchair, and those other parts of you need outlets, too.”

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.

“Art is definitely expression, but it’s also a sharing of experience, so it’s a wrestling match of being for you and others.”

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.

Kevan

Creativity and disability
(part 2)

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.

“He saw my story better than I could see it myself.”

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.

“Suddenly, and actually without meaning to, I had a very clear story to tell, and a starting point from which to launch the bigger story of my life with disability.”

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!

Kevan

Creativity and disability
(part 3)

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.

“I remember sitting at my desk, reading this weird book, and I felt the author say to me, ‘You should share your stories with the world, too.’”

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.

“Just as you struggle to be seen beyond your disability in your day-to-day, so you will always struggle in the same way with your art.”

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.

Kevan

Joy in the journey

I recently had the pleasure of meeting John Morris, a fellow world traveler and founder of wheelchairtravel.org. John and I are not dissimilar in our needs, namely the use of wheelchairs, and though we each approach travel differently in some ways, the core of our experiences is the same.

One topic that came up in our conversation was that of perspectives. We could swap stories all day about the difficulties of travel, especially in light of the recent health pandemic. But that’s not what we reminisce about.

“Our memories rest in the wonder of our adventures.”

I asked John how he maintains that positive outlook on travel. This is where our difference of approach comes into play, because I travel with a group of friends, while John goes solo.

In the pragmatic sense, a lot of my own positive outlook is bolstered by those I surround myself with. I can look on the bright side, but man, it really helps to have folks around me doing the same. John, however, is traveling alone, so his answer? “I try to focus on keeping a cool head with respect to the inconveniences of travel. Air travel, for example, can be quite uncomfortable and frustrating... but by leaving that frustration at the airport, I am able to better focus on the joy in the destination and the purpose of travel.”

“I couldn't help but agree; keeping a cool head is paramount.”

We can’t control those around us, and we aren’t always in control of our circumstances, but what we can control is our attitude toward it. I much prefer to focus on the joys of a journey than the (albeit inevitable) difficulties – not just looking back on the memory of it, but as I am experiencing it in the moment. As I mentioned before, part of how I do that is by the company I keep – that they be of a similar mind. It helps me regulate my “head coolness.” So, I had to ask, “As an independent traveler, what is a practical way you regulate, stay cool-headed and enjoy the journey? You mentioned the example of leaving your frustrations at the airport – how do you do that?”

To this, John made a great point. “It is through an understanding that there is a time and place to deal with conflict. If there is an issue with air travel that cannot be immediately resolved, it is best to address that through the appropriate channels at a convenient time. In nearly all cases, the appropriate time would not be to interfere with the very reason I have traveled. Save that work for after the journey, if possible.”

This is applicable, not only to travel, but to everyday life. Difficulties arise left and right, but they don’t have to ruin everything.

“Adopt a positive outlook by leaving those frustrations ‘at the airport,’ to deal with later and enjoy the rest of what’s in front of you.”

I believe, by doing this, you’ll discover a world of wonder and joy.

Kevan

Finding my passion
through travel

A few years ago, some friends and I set out on a trip around parts of Europe. Our destinations wouldn’t be accessible, not in the traditional sense. We wanted to climb the stairs of old cathedrals, dance on cobblestone streets, hike through countrysides and up mountains to ancient monasteries. It was all deemed impossible for wheelchairs, so we left mine behind and took a custom backpack, instead, for these guys to carry me. Our drive, at the time, was just to be together and have fun as a group of goofy friends, but the way we had to do it led to a greater need being revealed. As we returned home from the trip, opportunities presented themselves to interact with other families with disabilities.

“Through this experience, I learned the beauty of enriching the lives of others.”

The joy of inspiring and encouraging these families! That joy far outweighs any thrill of my own exploration, and it leaves a lasting impact upon, not just my heart, but the whole world around me. In one of my favorite movies, the main character talks about how he has realized courage is what interests him most. This is exactly what I’ve learned about myself in this wildly unexpected season of life.

My true adventure is serving you and you and you! My interest is in helping others to find courage and pursue it, to ultimately make the world a better place. It’s a matter of seeing a need and filling it as best I can with the resources I have around me.

Take a look around in your own life. Where is there a need, what is the need and how can you fulfill it? It may or may not have to do with disability – not in the traditional sense anyway.

“The world is full of needs, and we can all pitch in to fulfill them.”

If you have SMA or are close to someone with SMA, chances are your life is full of unique perspectives and approaches to the world. Can these help to fulfill needs and enrich the lives of others? If so, let’s go! Get those ideas and creations out there. Don’t be afraid, don’t grip them too tightly and don’t assume it’s the fix-all. Ask others for help and advice to make the ideas happen, be willing to collaborate, and then get the word out that you see the need and you have an option that may be helpful.

Kevan

Three tips for your next trip

Traveling is a feat for anyone. Now, throw in a disability – throw in caregivers, equipment, terrain issues – and you have another beast altogether.

“Here are three quick tips for putting together your next trip...”
  1. Intentionality: Traveling is fun, but there is a level of responsibility to keep in mind. As you choose places to go, how to get there and who to go with, be wise. Consider options, challenges and dynamics. Take time hashing it out with your team to develop the best experience possible.
  2. Simplicity: Some concerns are valid, but travel is not your everyday routine, so don’t treat it that way. What in your everyday routine can look differently for a few days? There will be enough to take in and keep up with while traveling without also worrying about what’s not absolutely necessary.
  3. Flexibility: For all your planning, keep a loose grip on what it looks like. There will come unexpected change, unforeseen obstacles and blessings alike. Be ready to rethink plans and go with the flow. This is so integral to the adventure experience and I’d hate for you to miss it.
“These three tips are – ironically enough – applicable to any traveler, regardless of 'handicapability.'”

When planning a trip, everyone needs to be intentional, simple and flexible. But when disabilities are involved, the stakes are higher, room for error is slimmer and the need for clarity in these three categories is more paramount. Prepare wisely, consider humbly, develop loosely and, most importantly, have fun!

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.

Kevan

Debunking Myths Around
Socializing with a Disability

Kevan smiling in a room with wooden floors and tables.

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.

“All the while, I’m the same ol’ Kevan they meet, with SMA and an insatiable love for being with people.”

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).

“The key is to see people—truly see them—and let the value of your relationship be deeper than whether or not they help you with your wedgie.”

Kevan

Five Ways to Make Your
World Accessible

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.

  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.
“Accessibility, in the end, comes from folks putting others first and working together to find creative solutions. This involves thoughtfulness and sacrifice on both sides of the conversation. But the result is beautiful: a world physically more accessible, but also more loving.”