I’m a Person First, Not An Inspiration

 Inspiration. It’s a word that is used a lot nowadays, but what exactly does it mean to be one? For many people with disabilities, being an inspiration is a mixed bag. It can be a positive feeling to be an inspiration to someone, but also demeaning when your worth is dependent on being an inspiration. So many times I’ve struggled with guilt over my feelings of sadness, anger, and insecurity. Why? Because those feelings aren’t inspiring. In addition to my worrying about being a burden, because I’m disabled, I feel like I should at least be inspirational. I worry that if I’m not an inspirational disabled person, my worth is less. I know that’s not true, but it is a thought I’ve had. 

There’s a term in the disability community, “inspiration porn”, that refers to the belief that disabled people exist mainly to motivate and inspire able-bodied people. Most of the time, people with disabilities are just living our lives. We’re not heroes for doing so. We shouldn’t be the basis of grace and everything good and holy. People with disabilities are just people—not heroes, not idols, just people.

That’s not to say I always mind being considered inspirational, because I don’t. Many times I’m fulfilled by the thought that I might give people some perspective or strength to keep going in their own battles. In fact, that’s a big reason behind my writing this blog. I want people to know that it is always possible to keep going, no matter what. So there are circumstances where I like being an inspiration, and then some situations where I just want to be myself.

For example, in class at school I just want to be known for being a good student—not a student with cerebral palsy, not an inspiration. I don’t want those aspects of my identity to matter when I’m trying to learn. I know it’s not that simple, but it’s the way I wish things were. Anyway, I was reading a book in my Anatomy class one afternoon when my teacher said, “Ainsley, I heard you read a million words this school year.”

(My school has an Accelerated Reading program where students are recognized for reading one million words over the course of the school year.)

“Yes ma’am,” I told her, smiling because I thought she was about to congratulate me. Instead, what she said next made me falter a little.

“That’s just…so inspiring, you know?” she gushed. 

I smiled and thanked her politely at what I knew was supposed to be a compliment, but it didn’t feel like one. To be clear, I like being recognized for my achievements. But as The Mighty member Kati Shelton said so well, I want my achievements to be recognized for what they are—not for what they are in spite of my disability.

To be honest, reading comes easily to me—in a world where not many things do. While other children were walking and running and playing outside, I was reading. I inhaled words like they were air. Reading is not something that my cerebral palsy makes challenging. And I know she knew that. I maintained an A in her class all year long. I read the material she assigned to our class and comprehended it. I don’t say that to brag but to convey my frustration with my reading a million words being considered inspiring. Something that is easy is not inspiring—even though I have cerebral palsy. My waking up in the morning is not inspiring. My speaking up in class is not inspiring. My everyday life is not inspiring just because I have a disability.

I don’t want all of my achievements to be considered inspiring because it diminishes my harder ones. Things like learning to ride a horse, graduating from occupational therapy, relearning how to walk and run… I’m fine if people consider those accomplishments inspirational because they were hard. It took so much effort to do those very physical things because I have cerebral palsy. That’s what I think an inspiration is or does: someone keeps pushing through even when things are hard. 

I’m not necessarily an inspiration just because I’m me. If people want to say I’m an inspirational person because I’ve achieved things that are difficult for me, that’s fine. I’ll accept that. I won’t accept people lowering their expectations of what I’m capable of doing. If I do something that’s easy, there’s nothing there to overcome. An inspirational person is one who overcomes their obstacles. And for me, good motivation is the thought that I might be helping people see what’s possible. 

I like being considered an inspiration sometimes. But I’m not just someone who could be considered inspirational; I’m a person first. I’m myself first.

Please Be Tolerant: It Makes A World of Difference

I just got back from vacation in Tennessee, and it was an amazing trip! My family and I went to Dollywood and the Smoky Mountains. I love traveling and getting to see new sights. However, sometimes vacations can be challenging because it means being exposed to new people, some of whom can be rude and insensitive at times. Of course, that can be the case anywhere, but on my recent vacation I had an interaction that inspired me to write this post.

Do you know what one of the greatest gifts when going out in public with a disability is? Tolerance. I’m sure almost anyone who is disabled will back me up on this. Everyone who has a disability will have different struggles in public depending on the type and severity of their condition, but I’m not exempt from people’s insensitivity just because my cerebral palsy is mild.

I’ve learned just how important tolerance is on the part of other people through my experiences over the years. One example is the stares I would receive when going to an amusement park. When I was younger, I used a stroller in the amusement park so I didn’t get tired as quickly. Because nothing appeared visibly “wrong” with me, many people stared as I was wheeled past. So many people would stare that I felt like a freak show. That just goes to show that many people have an intolerance to anything or anyone who is different. 

The frustration and almost fascination people had with me and my disability worsened because I—like many others with physical challenges—was able to go to the front of the line for rides so I wouldn’t have to stand in line for so long. So many adults stared and glared at me and my family that I eventually decided it wasn’t worth it to skip the line.

Which brings me to my point—tolerance from the public is a very valuable thing. When I was in Tennessee, my family and I decided to hike to Cataract Falls, which is a waterfall near the Smoky Mountains. The hike wasn’t long or strenuous; it probably wasn’t even a mile. That sounded like a perfect fit for me, so off we went. 

There was a lot of tree roots on the ground and uneven terrain as we walked, so I walked very slowly and carefully so as not to trip. I had also twisted my knee before we went on vacation, so overall I was moving a lot slower than usual. My dad was holding my hand to stabilize me, and because there were people behind us, we moved aside so they could pass.

As the people directly behind us passed, my dad and I stood in front of a bridge waiting to walk forward. Unfortunately, there were also people who wanted to get on the bridge and just weren’t patient enough to wait.

“Excuse me,” one guy said from behind us. At this point my dad and I were sandwiched between groups of people and had nowhere to go.

“Can you please wait just a second?” my dad asked because again, we couldn’t move forward.

“If you would just move over we can still pass you,” the guy muttered.

“What the **** is taking so long?” I heard from behind me. “This is ****ing crazy, man.”

My face burned with shame. In that moment, all I wanted was to magically be like everyone else—fast enough to keep perfect strangers from cursing at me in public to go faster. 

As I got a little distance from the situation, I realized how miserable someone would have to be to curse at a teenager holding hands with her dad on a peaceful hike, regardless of whether my CP is visible or not. It’s rude to curse at anyone in public; let alone someone who is obviously somewhat struggling. The whole thing was so ridiculous I would have laughed if I wasn’t so shocked.

As I told my friend the other day, the fact that some people act this way means there is a need to educate. I’ve wondered what I could have done differently to prevent the escalation and my answer is: I don’t know that I could have done anything. I could have worn my knee brace, but when people see that I can walk they still aren’t very tolerant. And to be honest, I shouldn’t have to “prove” that I have cerebral palsy just to earn people’s tolerance. I don’t think consideration is too much to ask for. 

I have a right to enjoy my vacation just like anyone else. If I walk more slowly than someone would like, they can take the opportunity to slow down and enjoy nature a little bit more. It won’t—or at least it shouldn’t—ruin people’s day to go just a little bit slower or to wait for just a second. 

I wish people understood that it’s not easy for me to walk on uneven ground. I wish people thought about that I’m a person, too, and doing things in a way that is not accessible is hard. I wish they saw the bigger picture and that while they may have to tolerate waiting for a few extra seconds, I have to tolerate pain and insensitivity on a daily basis. 

So please, if you encounter someone with a disability in public, be tolerant. Know that your life will not end if you have to wait a little bit longer. Don’t start cursing in frustration; I promise we’re probably more frustrated about moving slowly than you are. Thank you for your consideration.

Finding Friends, Independence, and Myself at Camp

This past week I went to Camp Dream Street, which is a four-to-five day (depending on age) sleepaway camp for kids with physical disabilities. Camp has always been fun before, but this is the first year that I felt independent—and just like I was at home away from home. So many places in society are not adapted for disabled people. Instead, disabled people are made to adapt to the world. That can make independence harder than it has to be. I have always doubted that I am capable of being physically independent, but I proved myself wrong this week. I also made so many friends who I can relate to and learn from. Usually I don’t have the confidence to approach people, but this week I changed as a person. Going to camp absolutely helped me do that.

Some of what I love about Camp Dream Street is that it levels the playing field. The vast majority of camp is fully accessible (except for one notable curb) and counselors are assigned to help campers with the tasks that they may be unable to complete themselves. My counselors were absolutely amazing people who treated me like a friend instead of someone they needed to babysit. So many people treat those who are disabled like they are inferior, but my counselors treated me—and my cabinmates—like we are human. Most of all, though, I got to have fun. Cerebral palsy wasn’t a limitation at camp. I don’t have to do things in spite of my CP at camp; I accomplish things with CP. We went swimming, canoeing, wrote a newspaper, tie-dyed shirts, drove a van, and so much more, and cerebral palsy was not a limiting factor. That’s very rare.

One of the most thought-provoking experiences I had was when my fellow campers and I in the high school age program were asked to speak on a panel advising counselors how to treat younger campers. A beautiful thing happened on that panel—I realized that I wasn’t alone in my perspective on disability. As I sat beside my cabinmates, and they brought up issues like being ostracized by able-bodied people, or their boundaries being ignored, or just simply, being treated like they weren’t fully human, I felt so validated. I felt almost euphoric because it hit me that I was in the right place. I finally had friends who shared some of my perspective.

Too often I feel like I am not enough. In the eyes of society, I’m not disabled enough, but I’m not able-bodied enough, either. I “pass” as able-bodied, meaning that people don’t always see my cerebral palsy, but as soon as my disability comes out, people view me differently. I talked so much with the girls in my cabin about their experiences with disability and came to realize that the mildness of my cerebral palsy didn’t matter at camp. They didn’t look down on me for how mild my CP was. They didn’t tell me that I shouldn’t complain because others had it worse. Instead, the girls in my cabin did the one thing I have always wanted: they accepted me and my CP for what it is, and for who I am. 

For once I didn’t feel like an imposter. I felt the most secure in my identity that I have in a long time. Often in society, the message is that if you are independent, you can’t possibly be disabled. I have tried to fight against these two conflicting parts of myself for so long. I want to be independent. I want to be validated as having a disability. You can have both. I can be both.

I learned so much about myself at camp. I learned that I can do things independently and away from home and not fall apart. I learned that I can do anything anyone else can—I may just have to do it differently. I learned to make waffles from scratch and to work together with people from all walks of life. I learned to drive with hand brakes! For a while I resented that I might have to drive with hand brakes, but now I understand it’s just a different path to independence. I learned that accepting myself as disabled wasn’t putting myself down. Considering myself disabled didn’t and doesn’t mean that I accept less for my life. The girls in my cabin taught me that separating myself from my cerebral palsy wasn’t healthy. It wasn’t helping me. Instead, I was just living in a big pool of denial with a heap of insecurity on top. Being disabled and secure in myself aren’t mutually exclusive. I learned to love myself a little more. After all, if some of my best friends at camp are disabled, how could I do anything but love that we share that connection?

Mostly, I learned that accepting my CP—not constantly fighting against it—can bring me good things in life. Without my cerebral palsy, I never would have met some of the most extraordinary people I have ever known. I wouldn’t have the genuine friendships I made at camp this week. I wouldn’t know myself as well as I do right now if I didn’t have CP. 

Going to camp this week was so good for me. I got to bounce ideas about disability off of other girls with my condition. I was able to interact with people in college (with and without disabilities) who are living their lives independently and successfully. I met people who don’t look down on me because of my disability, but they don’t deny that it’s there. My counselors love me and accept me just because I’m me. 

At camp I was a different person. I was confident. I was independent. I was secure in myself and my abilities. I felt worthy of having friends and of being a friend. I loved who I was at camp. I don’t want to lose that person, and I know she’s still in there somewhere. I just need to find her again. 

To my counselors and new friends from camp, thank you from the bottom of my heart. You opened my eyes and helped me understand that it’s most important to love myself—and that not all of society will judge me for circumstances out of my control. Everyone I was around brought out the parts of me that I like and embraced the parts of me that are flawed. I had so much fun just getting to be a kid with you all.

The Difference Between Accepting Chronic Pain and Giving Up

How do you accept chronic pain without giving up?

This is a question I’ve been asking myself increasingly often. I don’t know the answer. You might be wondering, Why are you writing a whole blog post about the answer to a question you don’t know? I decided to write this post in case someone else was grappling with the same question and felt alone.

As someone with both cerebral palsy and chronic pain, I’ve been taught to never give up. If a person who has these conditions gives up, they’re out of luck. No one can help me get better but myself. But what is “better”? “Better” to me can never mean a cure. Cerebral palsy doesn’t have a cure, and if my chronic pain does, it’s not easily attainable. “Better” means that my conditions are managed to the best of my ability to prevent from getting any worse. For example, maintenance is an important part of having CP and chronic pain. If I don’t continue to stretch and exercise, my muscles and joints will be stiff, making it harder to move around. My version of “better” is different than everyone else’s, but it has to be. Without the knowledge that my baseline is different, I would be stuck endlessly resenting my body and my lack of a cure. If “better” to me meant “cured”, I would have given up. That is the one thing I can’t allow myself to do.

There has always been a way for me to overcome things. I’ve always told myself that I can do anything anyone else can; I may just have to do it differently. Can’t carry a backpack? Fine, pull a roller bag around school. Have trouble climbing the stairs with a roller bag? Okay, take the elevator. Struggle to graph coordinates? Use a scribe. But chronic pain is something I can’t avoid. I can’t not feel the pain and there is no way around it.

My chronic pain began in August 2017. I was 9 years old and had no idea how to cope. I woke up one morning with severe stabbing pain in my knees. The muscles in my legs were always tight because of my cerebral palsy, but this was very different. My mom called my physical therapist, who said he believed it was just a growth spurt. The pain moved into my hips and stayed there. Five doctors, three rheumatologists, two different (incorrect) diagnoses, one major surgery, and countless X-rays later, my hip pain is still here. My chronic pain began almost 8 years ago, and I still haven’t accepted that it is here to stay.

I don’t know how to accept my chronic pain. I grieve the person I was before. I have begged and pleaded with my doctors for an answer. I have angrily seethed in my head about how unfair it is that I must deal with this pain at such a young age. I have my bad days where I am depressed about always being in pain. The only stage of grief I have left is acceptance, which seems to be the hardest.

The thing is, I don’t want to accept that I have chronic pain. I don’t want to live the rest of my life in pain. Most people my age are in the athletic prime of their lives; I move like an old lady on my worst days, and on my best, the pain is always there. I had nine years of my life where this pain didn’t exist. I’m used to fighting—with cerebral palsy, I have to fight for what I need. I want to fight this pain. But there is nothing left to hit it with.

I have tried five different types of medication, Botox injections, and steroid injections. I have seen three rheumatologists and a physical rehabilitation doctor. I have gone through astym therapy, hydrotherapy, and dry needling. I have been given diagnoses of bursitis and fibromyalgia, both of which were incorrect. My family and I have stopped trying to pursue a diagnosis and just treat the symptoms. However, I feel that a diagnosis would help me in my path toward acceptance. It is extremely difficult dealing with pain that you know is real, but undiagnosed. As a last resort, I underwent a major orthopedic surgery in June 2023 to attempt to stop my pain. The surgery improved many aspects of my cerebral palsy, but my pain did not change. 

As I write this, I am experiencing a flare-up. My doctors are at a loss as to why I am still having chronic pain. My choice remains to either accept my chronic pain or keep living in denial that it might—and probably will—affect the rest of my life. I know what the healthier choice is. I ask myself, Does accepting that I have chronic pain mean that I’m giving up? The fact that my pain is chronic means it might never go away. Am I okay with that? Do I have to be okay with that? It sure is a hard pill to swallow sometimes. Which brings me to my question: how do you accept chronic pain without giving up?

My answer to you would be this: Understand that the pain is there. Don’t try to ignore it or deny its existence. That will never be helpful. The only thing that denying my pain did for me was make me resentful. I was resentful that there wasn’t an answer. I was resentful that there wasn’t a cure. Chronic pain can’t be ignored or avoided. I can’t live my life in spite of my chronic pain; I have to live with it. There is a difference. If pursuing an answer or diagnosis brings closure, keep trying. Keep fighting. (I still Google my symptoms in search of a diagnosis.) But don’t stay stuck in that rut. Giving up would be devoting the rest of your life to your pain. Remember that there are still things you enjoy, things that are worth living your life for—with or without chronic pain. 

Accepting that I have chronic pain—and that it might never go away—is very difficult. It makes me sad and fiercely angry. Choosing to recognize those feelings—to acknowledge pain—is scary. So in that way, accepting chronic pain isn’t giving up. Accepting chronic pain is one of the bravest things you can do.

Words Are Enough