I was thirteen when I was diagnosed with a neuromuscular disease. Charcot-Marie-Tooth (CMT) is something that affects my entire body. It cripples me by progressively deteriorating my nerves, which then weakens my muscles, similar to MS. This makes it difficult for me to do things like walk long distances, stand for extended amounts of time, write or use fine motor skills, and other related activities.
The way I was diagnosed was quite ironic. Like I said, my disease makes it difficult for me to walk. In fact, when someone is diagnosed, doctors recommend not overexerting oneself so as to not risk further harm. But without this knowledge, naïve little me signed up for a local 5K walk. I was very excited about it, since I would also be walking with my dad and a few friends. The day of the race came, and about ten seconds before it started I had the grand idea to see how fast my dad and I could run the three miles. I was not a runner; I have never been a runner. I do not know what came over me to even consider running, but I took off determined to finish as fast as I could. About halfway through, my feet felt like they were on fire. But I thought, “Eh, I’m running, of course it’s going to hurt,” and I kept pushing. I painfully crossed the finish line, and I actually thought my feet were broken. Over the next few days of staying off them, they did not get better. So my mom took me to the doctor. My feet luckily weren’t broken but, surprisingly, the bones in my feet were fused together. Since that is a hallmark symptom of CMT, I was diagnosed on the spot.
I had to change every aspect of my life to avoid hastening the decline of my nerves and muscles in the hope of maintaining as much function as possible for as long as possible. No running, no writing with a small pencil (at times no writing at all), less walking, less standing, more sitting; anything to keep from overdoing it and ending up in pain, unable to use my hands or feet. Before my diagnosis, despite spending my entire life working around physical “quirks” and limitations, a stranger wouldn’t look at me and think I was disabled. But this new way of life made my disability less invisible. Giant pencil grips and clunky wrist and ankle braces lead to lingering stares and odd expressions. I started to be treated differently by those whom I’d known for quite some time. I began to wonder: Is this how all disabled people are treated?
Grade school was a difficult time to implement all the modifications required to accommodate my new physical needs. My classmates were not onboard with my newfound “special treatment,” especially when they learned I got to “skip” gym class or have my computer and phone out during lectures. They were jealous of my situation and in turn they became cruel, relentless bullies. In reality, it was devastating to be unable to participate in all the activities with my classmates. Instead of drawing a mathematical function on my note paper, I would have to find a picture of a similar equation and paste it into my word document (on my own time), or not have an example to study at all. Instead of playing dodgeball and running around in gym class, I spent the class period silently studying in the library by myself. Even some teachers believed I was faking since I “looked fine.” The teachers who didn’t believe me would complain to the principal, demand new doctors’ notes confirming my diagnosis, and publicly shame me in class by loudly telling me there was no need for my accommodations. My difficulties bonding with those my own age spread past the classroom. I had to refrain from fun weekend activities like hiking, skiing, or even a day spent walking around the mall. All of these seemingly harmless endeavors would be risky and harmful for me, leading to injuries and causing unnecessary nerve and muscle deterioration.
There is this communal concern shared by every disabled person I’ve talked to: we all worry about not being believed. It doesn’t matter if it’s from a random person on the street, a close family member, or even a doctor, but it is an ongoing fear we have. And yes, many people have pointed out that we should not care about the opinion of others, but sometimes it’s impossible not to. Everyone wants to be liked and most everyone tries their hardest to be. When the only reason someone has turned a cold shoulder is because of a wheelchair or a pencil grip, it is quite upsetting.
I’ve found when able-bodied people learn someone is disabled, they react one of two ways. The first way is to do a complete one-eighty with their personality. They will go from being kind, fun, and truly enjoyable to be around, to either being completely avoidant or finding not-so-subtle ways to be a bully (and yes, “mature” adults do this as well). I’ve seen this in action not just with myself, but out in public with people I don’t even know. Not surprisingly, social media is where I come across this most often. One day, I was doing my daily scroll through Instagram when a video of a wheelchair user came on my screen. The woman was doing a regular “day in the life” kind of video where she was teaching her viewers how she gets on a public bus in her wheelchair. Once she got on the bus, a middle-aged woman started speaking to her about how she “probably uses that ‘thing’ for attention” and how she’s “too young to need a wheelchair” (mind you, the disabled woman seemed about early twenties, but every age qualifies to need a wheelchair).
The second way someone reacts when they learn another is disabled is walking on eggshells around them. They start to coddle the disabled person, thinking they are unable to do anything on their own. People like this won’t even say the word “disabled;” they’ll try to find other words for it that they deem less offensive. “Differently-Abled” is my favorite jargon these people have come up with. I asked some friends in the disabled community what they think of the term, and the tally was unanimous: We all hate it. “Egg-Walkers” use this new term to collectively describe the entire disabled community, regardless of what we can or cannot do. Differently-Abled literally means someone who has different abilities than another. Disabled means someone is unable to do a normal ability or task, and needs to resort to doing it an unconventional way. Call me disabled, because that’s what I am.
These Egg-Walkers are a new kind of patronizing bully. They have sprouted and grown in society over the past few years with the coming of the “woke” trend and are mainly contained in the United States. Now, do not confuse these people with others that are truly kind and have the best intent at heart. Egg-Walkers believe they are above and better than the disabled; they go out of their way to make us feel inferior. They make a big show over how helpless we are, so they can show everyone how helpful they are. Egg-Walkers also believe they can speak on our behalf on almost any topic. Whether it be new legislation, new terms for the disabled community, or even speaking for and answering over us when we are asked a question directly. I’ve found that around eight out of ten times the general public learns something is “offensive” to the disabled community, the idea was propagated by able bodied Egg-Walkers who became offended “for us”.
Quite frequently, disability accessibility is an afterthought. Sometimes it’s not a thought at all. There are many things that facilitate ease of life for the disabled, it just depends on the type of disability. Mental disabilities can still require accommodations and accessibility just as much as physical forms. For example, a student with autism or ADHD may benefit from accommodations such as an extension on homework assignments, more time during tests, extra lecture notes or a scribe, or perhaps the ability to listen to music through headphones during exams. Physical disabilities also benefit from accommodations, but of a different variety. A student who uses a wheelchair might prefer aids such as abundant and close handicap parking, extra time to arrive in the classroom, nicely kept walkway conditions, and plenty of ramps and elevators.
Often, these (most times simple) tasks are looked over. Why would able-bodied people think about an unkempt, bumpy sidewalk when they can walk right over it with ease? Or why would we need extra time on tests when they are able to complete it just fine?
I was a wheelchair user on-and-off for about a year. Once I completed high school, it was a good time to take a gap year to fix the way I walked. This required having surgery on both my feet and ankles, and involved a very long recovery process. I was in alternating leg casts for a total of 5 months. During this time, I had to use a wheelchair instead of crutches. (CMT leaves me with dreadful balance, so nobody wanted me falling flat on my face while crutching around.)
My time on wheels led to some pretty unfortunate discoveries. First off, handicap parking can have more disadvantages than advantages. Yes, it may seem like it is a more privileged spot since it is technically closer to wherever I decide to go, but many times all the handicap parking is already taken or is located at a less-than-ideal spot. Handicap parking is a hard find in many lots, but especially in street parking. The minimum number of handicap parking spaces required by law is obscenely low. For 50 regular spots, there only needs to be a minimum of 2 handicap spaces, and for 500 regular spots, only 9 handicap spaces are required. That is an average of only 3% of a parking lot being handicap spaces. So, if I was finally able to find a handicap parking spot, usually something was not accommodating about it. Whether it be no space to bring my wheelchair around my side of the car, or the spot was far away from a sidewalk ramp, or even that it was located at the opposite end of the parking lot and furthest away from the entrance I was using. All of these hindrances made many handicap spots impractical, so why bother with them at all if they are virtually useless?
For the most part, people treated me kindly when I was wheeling around. They would go out of their way to not disturb my trajectory, let me go first in line, or offer a prime seat at a function or event. I also noticed people smiled at me more. On multiple occasions I would look up at a passer-by and they would give me a warm, friendly smile as if I knew them. I was, of course, very grateful for these kind gestures at times, but other times I felt like it was overkill.
Traveling Americans love to praise the hospitality and kinder nature of other countries. My experience with my wheelchair in Canada begs to differ. People rammed into my wheelchair at least a dozen times, none of them bothering to mutter an apology or “excuse me.” Handicap parking was near non-existent, and the sidewalks were abysmal with gaping cracks and no street ramps to exit. While traveling in the UK without my wheelchair, I was not burdened by such design flaws, but I certainly still noticed an abundance of them. Amsterdam is known for its walkable city with plenty of maintained bicycle lanes. Since Amsterdam’s main form of transportation for its residents is either walking or biking, the city maintains its sidewalks in peak condition, which is perfect for wheelchairs. Perhaps if America was more walkable, we would have more accessible sidewalks.
There is a certain amount of savoir-faire needed to help a disabled person. It takes quite a bit of practice, and mastery is rare. Even my close family members, who have known about my disease for as long as I have, still have trouble with how to support me. These loved ones have the best intentions in their hearts, but sometimes their suggestions to motivate me to push myself are of more hindrance than help. For instance, they would always invite me along for neighborhood walks that they promised would be short and easy. During these walks, I would begin to feel quite drained and sore, but when I asked to turn around they said they believed I could push on just a little farther. Of course, to try and make them as proud of me as possible, I always agreed. This was not appreciated by my diseased body, and I’m certain it caused a considerable amount of deterioration. It also usually meant I had to wear more bracing and use a cane, or stay off my feet entirely the next few days. However, I do not fault them for trying to push me. Their suggestions were not born of malice, but of love. They believed if I went a bit past my limit, it would help me with my stamina. They are now much better with understanding when I need to stop, but they are still not perfect. And that’s okay. I know they love me with their entire beings, and are trying hard to learn how to help me in the best way possible.
Growing up I knew disabled people were a normal part of our society, and I never really gave it much thought. Of course I knew how to behave when I saw someone who was disabled in public. Whether that be I should give their wheelchair extra space when passing them on the sidewalk, not petting their service dog, or simply not staring at them, I was thoroughly taught by my parents to treat them with as much respect as I would any other person and I believed this was what everyone else was taught, too. Unfortunately, I was wrong. When I was diagnosed, I slowly began to realize how many people did not treat the disabled like “normal” individuals. It wasn’t just a few rude people here-and-there. I was constantly bombarded by those who thought it was enjoyable to humiliate me about things I could not control. So many people ignore so many things; why can’t they tolerate me?
With all these examples of wrong ways to treat and help a disabled person, it might seem impossible to find the right way. However, even with all of the scenarios I have discussed, one rule stands: Just ask. When in doubt, no matter the situation, just ask the disabled person. Whether it be what terms they use to define themselves, or if it looks like they are struggling and might need help, asking them and getting the proper answer is always better than assuming or doing nothing. Even if a faux pas occurs, all that is needed is an apology and a desire to right the wrong. Most disabled people welcome questions, since they too would rather people know the answer instead of making assumptions. Ask me anything and everything, for I would love to share my world.