Topic: Accessibility

When I hear the word “travel,” my brain neurons fire with excitement, but they also fire with anxiety. Traveling with a child who has SMA and needs medical equipment can be grueling. Over the years, I’ve learned it doesn’t have to be taxing, if I’m prepared. My son Jack loves adventure, seeing new cities, and trying new foods. As long as I follow my pre-travel rituals, then I have the pleasure of seeing Jack see the world.

I’ve laminated our checklist to reuse time and again. Jack’s Nana helps me choose and pack his outfits. Jack likes being stylish. I am in charge of packing all of Jack’s favorite snacks for road trips and plane rides. Finding a good insulated lunch box and ice packs to store snacks is also helpful. Jack’s Papa is the best roadie, always ready to load the luggage into our vehicle. Lastly, Jack is in charge of packing his favorite toys and his tablet. I always have the chargers.

Whether I’m traveling by plane or car, that helps me determine how I’m going to pack. What has been most useful for me is hardshell luggage. I think the hardshell makes me feel like anything inside is less likely to get damaged by airline handling. If I’m traveling in our own vehicle, I often pack more than I need in case we want or need to extend our trip. On road trips, I also love bringing large tote bags on wheels. So I can just roll all our necessities around; it’s brilliant!

This is all to say that traveling can have its challenges too. Our biggest issues have been flight delays. I have regretted booking the last flight out, because that’s it, no options. So if we are stuck on an unanticipated long layover, Jack can get grouchy or have pain from sitting too long. We have been so lucky that Jack’s wheelchair has not had any major damage from airline travel, but we have had some of our wheelchair accessories lost. Some that are important to Jack, like his cup holder. Jack loves having his water bottle close by. I always ask the airline staff if we can board first to guarantee I can comfortably and safely transfer Jack to his seat. I also need an extra minute to ensure Jack’s wheelchair is folded correctly, all the pieces are tight and no parts are loose. It has been really helpful to request pre-boarding and notify the airline that we’re traveling with a wheelchair when booking the flight. It makes the day of traveling so much easier.

I volunteer for disability-related organizations because advocacy is important to me. I would not be where I am today without the help of advocates.

When I was a child, I saw my mom stand up for me so many times when there were issues regarding accessibility or being treated fairly. I always saw my mom go out of her way to connect with other parents who had a child with SMA, and I particularly remember my parents always begging me to become pen pals with other kids. Although I witnessed all of this, it wasn't until I turned 18 that I realized I needed to start advocating for myself and connecting with others who have a disability, like me.

If no one stands up for me, I feel like I could fall apart from the frequent circumstances of inequality and negativity I face. For example, someone can talk to me with an unkind tone if I let them, or they can dismiss me as ineligible to squeeze into the school elevator unless I speak up. I can also miss out on opportunities that will help me in the long run, such as physical therapy, which would cause me to lose mobility function if I do not seek the help I need. There can be financial, physical, and certainly emotional categories of mistreatment I can likely endure if I do not advocate for myself. Even worse, I can endure all of these in vain because I did not do a thing about it to help the next disabled person avoid the unique or common situation.

With music and coding as my focus, I come across chances to improve accessibility and inclusion in mostly those realms. Community encompasses various focuses, and I always want to be a part of that.

I have volunteered for decades by fundraising, cold calling for events, writing original music, and performing pro bono. I have recorded audiobooks for the blind and those who benefit from audiobooks. I have volunteered with disabled children, presenting motivational speeches at schools (from elementary to higher education), and at hospitals, businesses, nonprofits, and government organizations. Most recently, I have fought for disability inclusion in the music industry. There are many opportunities to build your community through volunteering and so many ways to help.

I took on leadership roles in an effort to make changes throughout New York City, and I am thankful to know that they have paved the way for more advocacy via the community.

Although it seems simple, each of the above moments is meaningful. I balance difficulties with the knowledge that when I advocate for myself, I am also advocating for others as well. I have learned always to do my best and give as much as I can of myself because I believe my efforts will make a difference.

Like every overachieving high schooler, I had dreams of attending a fancy, ivy-covered college, with sprawling libraries and a quad to boot.

It didn't take long for reality to temper my dreams. My college of choice had to be within driving distance of my suburban home. Then there was accessibility to consider, and scholarships, ad infinitum.

My college experience wasn't nearly as sparkly as I'd hoped it would be. While the campus was accessible, the faculty wasn't used to providing accommodations. By the end of day, I was exhausted - physically, mentally, and emotionally.

So, I left.

It wasn't an easy decision. It felt like I was giving up. Like I was disappointing the high schooler in me, who still longed for lecture halls and study dates. I wanted to be like everyone else in my graduating class, with their picture-perfect Instagram profiles. I wanted to be normal.

But I wasn't. I would never be. So I transferred to an online program and never looked back. Time and time again, I see this conundrum in life with SMA. I want things to be a certain way. I grew up expecting things to be a certain way - a certain education, a certain job, a certain house in a certain city with a certain way of going about my day. I pretend, if only for a while, that I am in control of my life.

Then I remember.

It seems that, whenever I learn this lesson, it doesn't take me long to forget it. Years after I transferred schools, I was faced with a similar dilemma: rack up tens of thousands of dollars in tuition so I could get an M.A. that would land me a job I probably wouldn't be able to handle or accept that some things I cannot change.

I cannot change my university's willingness to accommodate disabled folks.

I cannot change my body's ability to withstand a regular work week.

We can spend all our energy trying to make something work - shouting at the world until either it hears us or we lose our voice. We can try to be normal and beat ourselves up over things we can't control.

Or we can try something new.

I don't know about you, but I'd much rather hold life lightly - letting go of certain outcomes, and embracing whatever comes our way, trusting that we can make the best of any less-than-ideal situation.

It can be hard to stay engaged, especially in advocacy work. There's always something vying for our attention, from social media to petitions to our own health and well-being. Burnout is the inevitable result - exhaustion so pervasive that we have no choice but to disengage at times.

This act of disengaging isn't just natural; it's healthy. It allows us to recharge and rejuvenate, so we can show up as our best selves. But sometimes we forget to return. We've grown so accustomed to isolation that we struggle to look beyond our immediate spheres, beyond our own lives.

I see this a lot in the disability community. Life with SMA - or any other rare disease - is difficult. Sometimes, it's all we can do to look after ourselves, let alone someone else. But I push myself to show up.

I get back to the work.

I try to remember that our community is bigger than it seems. For every person in the #DisabledAndCute hashtag, there's someone out there with unmet needs.

Just because I feel seen, doesn't mean that others do.

This is true for the SMA community - people around the world with different life experiences and resources at their disposal. But it's also true for the disability community at large. Invisible illnesses. Ambulatory folks. The list goes on.

Some of us are thriving, and some of us aren't.

Navigating a world that wasn’t made to be accessible can be taxing. The extra planning, the coordinating, the calling ahead to see if there’s accessible seating — sometimes it seems like a chore just to go anywhere.

Being denied the opportunity to go out with friends or family because the establishment is not accessible, or not being able to apply for your dream job because the location isn’t accessible.

If you have SMA or a disability, I’m sure you know this all too well.

It can be tough hearing people’s excitement when a place does turn out to be accessible, as if it’s an add-on — something extra.

I’m guilty of feeling “thankful” when a place I went to just happened to be wheelchair accessible. It wasn’t until recently I discovered that the feeling of thankfulness I experienced when I was presented with access stemmed from deep-rooted internalized ableism. This is something we all have to continue to work on, whether we are disabled or not. The work begins with education, awareness and storytelling.

Accessibility is nothing to be thankful for, because it’s a human right.

Yes, accessibility is a human right, not a privilege.

I’m Khrystal K. Davis, mom of five, including Hunter, who is eight years old with spinal muscular atrophy (SMA) Type 1. I participate in SMA My Way because I believe it’s important to be an empowered advocate as an SMA patient or parent.

Hunter was delivered via a C-section at 36 weeks. A medical team of 12 filled the operating room. All went well, and Hunter and I went to the recovery room with a nurse, my husband and my mom, who is also a nurse.

Hunter’s health rapidly deteriorated in the recovery room. He began to grunt each time he exhaled. Hunter was my fourth baby, so I knew this wasn’t normal. I asked the nurse to observe, but she didn’t seem concerned. Still, I knew something was wrong. I asked my mom, and she tried to assure me, “I’m sure everything will be okay.” The look on her face was far less reassuring than the words she spoke, and she left the room.

My mom returned, and a medical team from the NICU rushed into the room behind her. They quickly whisked Hunter away to the NICU. His condition continued to worsen, and he required intubation for respiratory failure.

I had to learn to advocate for Hunter from the beginning, but the type of advocacy evolved following his SMA diagnosis at eight weeks of age. I focused my efforts on getting Hunter an appointment with an SMA pulmonologist, an expert and asset in the SMA community, and medical equipment to help maintain his respiratory health. The SMA pulmonologist changed everything for Hunter—we now had a team advocating for him. I learned how to navigate as the captain of that team.

His specialist referred Hunter to speech, physical and occupational therapists, and they too became part of Hunter’s advocacy team. He enjoyed and flourished in his therapy sessions. Together, we secured braces, positioning seats and wheelchairs. Unfortunately, access to what Hunter needed wasn’t guaranteed, and we frequently received insurance denials. The online SMA community was instrumental in helping us overcome the denials. Other parents provided examples of what they’d done, and I modified those documents to address Hunter and his needs. I also began to anticipate potential questions and concerns and started addressing them proactively, rather than reactively. It was great, because I didn’t have to reinvent the wheel each time to help Hunter get what he needed.

I never anticipated the extent to which I would need to advocate for Hunter. Others in the SMA community paved the path to advocacy for me and knew the obstacles we would face. I listened, learned and adjusted my advocacy as needed.

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.

During our speaking engagements at elementary schools across the country, a common question we get asked by inquisitive, young minds is: “What do you do if your house has steps?”

We don’t need to belabor an obvious fact – accessible housing is rare and difficult to find – but as Hannah and I have just purchased our first home together, we wanted to discuss a few of our observations (and tips!) from throughout this experience.

A frustrating part for me was that I couldn’t accompany Hannah to many of the open houses, due to inaccessibility. We entered the home-buying process with the assumption that at least some adaptations would need to be made to make our future home accessible, so we didn’t limit ourselves by only seeing perfectly accessible houses. The unfortunate effect of this decision was that we looked at many places with 3+ steps at every entrance.

We counteracted this issue in several ways. Sometimes, Hannah would attend the showing by herself (or with her mom!). Hannah made sure to take lots of photos and videos so she could share them with me afterwards. Another option was to have our real estate agent do a “virtual” tour for us. Using a video call on his phone, our agent walked through every room while we watched from the comfort of our apartment. With his video tour and his tips about the pros and cons of every room, it was just like doing an open house in person.

If possible, I’d also bring along my portable ramp to get inside as many of the prospective homes as I could. I enjoyed this method the best, but all three options gave us a great sense of our choices.

With a disease like SMA, requirements for a home are obviously going to vary from person to person, but here are some of the things we asked about and paid attention to when picking our first home:

• How much work needs to be done to make the front entrance accessible?
• If there’s a basement, is it a walkout or would we need to install an elevator/lift inside the home?
• We generally looked only at one-level homes. Multiple floors just mean a lot more work needs to be done to make it accessible.
• Were the rooms and doorways spacious enough to maneuver my wheelchair easily? In our first apartment, the hallway to our bedroom was so narrow that I scraped the doorway pretty much every time I entered it, which created a lovely, shrill screeching sound. Sorry neighbors!
• Since Hannah lifts me onto the toilet and into the shower right now, we paid close attention to the layout of the bathroom.
• An attached garage was pretty much a necessity for us, living in Minnesota where it snows 11 months of the years (at least it feels like). In the home that we eventually purchased, I can drive from inside our house into the garage and right into our van without ever going outside. In no small way, this feature is helping to keep me healthy, as I no longer need to spend time in the frigid cold/ice/snow getting into my van.
• Does it have a fireplace? This one has nothing to do with accessibility. I just really wanted a fireplace.

We navigate life as an interabled family in a moment-by-moment way.

We do what we can, when we can; but, more often than not, we choose fewer activities and fewer people. This forces us to be deliberate and be intentional with whom and how we spend our time.

We spend time with people who recognize our life runs at a different pace. People who consider accommodations so our disabled son, Asher, can be included in activities. People who are willing to help when things are hard. These are the people who won’t be bothered by coming to our house instead of a park when it’s the best accessible option. These are the people who will swing by on a moment’s notice to pick up our daughters, so they are not stuck at home when their brother is sick. These are the people who understand we can’t always do it on our own, and they are willing to be our village.

Our family ebbs and flows based on Asher’s health. When he is doing well, we are full steam ahead. This is when we register the children for a special activity in the community, we take a spontaneous family trip or we try something new. When Asher gets sick, everything slows down, sometimes to a standstill. We try to divide and conquer when possible to maintain activities for our daughters, but at the same time, we’ve learned that slowing down is a team effort, and as a family, we are in it together.

Activities often require a delicate balancing act. Asher usually needs modifications or extra assistance to participate in activities. Many times, his sisters want to do things that their brother can’t do. In spite of these challenges, we often celebrate our parental victories when we make the impossible possible. But there are times we help our children understand our limitations or their limitations literally make some things impossible to do. Limitations are hard for children to accept, but it helps to reframe their mindset to think about all the times and ways they have and will push past the immediate limitation.

It’s not always easy to tell how our children are navigating through our interabled family life. We catch glimpses that show us they are doing just fine. Like the moment at a friend’s house when Asher’s sister pushes chairs out of the way to make room for his wheelchair. Or the moment Asher celebrates his sister’s accomplishment for something that he will never be able to do himself. These moments help our hearts rest a little easier. But it’s when we are sitting around the dinner table telling jokes or snuggled up in bed watching a family movie that we know the simplest and sweetest moments are the keys to their hearts – no matter what life they are navigating.

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).

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.