Disability Pride Month: Why I’ve Embraced Saying ‘I’m Disabled’

  During Disability Pride Month, I wanted to share a little bit about my own relationship with my disability; specifically, the “disabled” label and my feelings surrounding it.

Generally speaking, I despise labels. Most of the time, labels are based on stereotypes, which are so surface-level. When most people interact with a label put on someone else, they assume that there is nothing else to know about that person and refuse to look any deeper.

The problem with that is labels typically ignore any complexity. Human beings are not just comprised of stereotypes. We’re much more complicated than that. But for many people, the word “disabled” immediately brings to mind several stereotypes:

Innocent.

Inspirational.

Naïve.

And several others.

While some disabled people may have these qualities, it’s not true that all of us do. More importantly, these qualities do not  define the whole of a person. They don’t explain the person’s story, their values, their fears, their hopes and dreams. A person can never be summed up by one word, and that is exactly what stereotypes do.

Disabled people do not fit into a cookie-cutter role. The disability community is diverse and beautiful and varied. Disability itself is a spectrum and does not conform to society’s expectations.

The societal expectation for a disability is generally a person who uses a wheelchair—and that’s not inaccurate. Many wheelchair users do have disabilities. However, that is a very limited picture of what disability can look like.

The label of disability has its downfalls. It brings to mind a certain image and stereotypes. But using the disabled label—and being accepted as such—has also made me feel much less alone. I have constantly been told that I don’t look disabled, I don’t look like I have cerebral palsy, and I would not be considered disabled. I completely understand that most people intend this as a compliment, but it’s not one. Every time I hear something like this, I feel incredibly lonely. Yes, I can walk. I can talk. But that doesn’t make my struggles any less real. Being seen as disabled without reducing me to my disability recognizes my effort and a part of my identity while still maintaining that I am a whole person.

When people tell me that I don’t appear to have CP and that I don’t look disabled, usually they mean one of two things: (1) I don’t fit their expectation of a disabled person (someone in a wheelchair) or (2) they think of disability as a detrimental thing and are trying to compliment me. Either way, I feel isolated. 

I’m disabled enough that there are some things that take much more effort for me than it would for most people, but I look able-bodied enough that I have to defend my needs. I’m disabled enough that some people automatically assume I can’t understand complexity, but I look able-bodied enough that I’m expected to move like everyone else. 

Because I can walk, speak, climb stairs, and perform most tasks independently, I’ve never felt “disabled enough” (whatever that means). I feel disabled, I deal with ableism, I have experiences that are extremely common in the disability community… and yet, I don’t feel like I’ve earned the right to call myself disabled. 

Over time, though, I have learned that the label of “disabled” isn’t something to be earned; it’s something you live. I live my life with a neurological condition that causes pain, fatigue, spasticity, and mobility limitations. Cerebral palsy’s impact on my life really cannot be measured—sometimes excruciating, sometimes awesome, at times neutral. Likewise, disability is neutral.

Like others in the disabled community, I have good days and bad days with my own body. Like other disabled people, I do things differently. Like other disabled people, the way my body works has given me a unique perspective on life. And, like others in the disability community, my disability has given me an opportunity to see humanity for how it really is—frustrating at times, but on the whole, beautiful and empathetic and kind. I experience all of these things because I am disabled. 

Just because I don’t look how a disabled person is “expected” to look does not mean my disability isn’t valid. I will acknowledge that my disability is less visible, and that can cause some able-bodied people to think, “If you look like me, and I don’t struggle with this, why are you struggling?” I also berated myself internally. I didn’t give myself grace when I struggled because I didn’t feel like I was allowed to struggle. I felt that I wasn’t visibly disabled enough for my struggles to count.

If you asked me if I felt that someone else with a disability—no matter the visibility—should be allowed to feel that her struggles are valid, my answer, without question, would be yes. I find it difficult to give myself the same courtesy. 

As I’ve gotten older (and with a lot of internal work), I’ve realized that sometimes there is no amount of willpower that will outweigh the facts: I have a disability. Disability is not inherently a negative thing, but I can’t deny that it affects me. I can achieve whatever I put my mind to, and I have a disability. Both are true. 

Ultimately, I can accomplish any dream that I have for my life, but that doesn’t mean I’ll do it in the same way everyone else will. I want to drive, but does that mean I should automatically drive with pedals? No, because that wouldn’t be safe for me. Can I climb stairs? Yes, but that doesn’t mean I can do it without a rail. Why? Because I am disabled.

My disability is not an excuse. It is my reality. I live with my cerebral palsy every single day. 

I feel it in the spasticity of my legs, in how much it hurts to walk, in how much effort it takes to move.

I see it in the X-rays of my rotated femur, in people’s expressions when I struggle with something they find easy, in the inflammation throughout my hips and back on ultrasounds.

I’m reminded of it at every doctor’s appointment, every time I take a step, and every time I fall. 

Cerebral palsy is my reality, and being disabled is my reality. Calling myself disabled has made it easier for me to embrace that. Whenever I have referred to myself as disabled, however, I’ve sometimes been told, “Don’t call yourself that. Don’t define yourself that way.”

Firstly, there is a huge difference between defining myself by my disability and acknowledging that it is a huge part of my identity. I wouldn’t be the person I am right now without having lived with cerebral palsy. I’ve also learned that something can have an important effect on your identity without reducing you to it.

Furthermore, “disabled” is not a bad word. Disability is not sad, it’s not tragic, and it is not automatically negative. Living with a disability and interacting with other disabled people has reaffirmed my beliefs that the worth of a human being is not determined by independence; that asking for help is not a weakness; all people—and their bodies—deserve to be loved and desired; and vulnerability is an amazing thing. 

And that leads me to another reason why I’ve embraced calling myself disabled. My disability has given me a community.

A community who doesn’t judge me based on what my body can and can’t do.

A community that doesn’t assume they know everything about me based on the way my body works.

A community who doesn’t define my experience for me, but lets me speak for myself.

And most importantly, a community where I belong.

There have been plenty of able-bodied people who have told me I’m not disabled enough, but yet I need accommodations and have limitations, so I am not an able-bodied person. I have always felt stuck and like I never belong anywhere.

Fitting in has never been the goal for me. Fitting in means that a person is indistinguishable and, usually, afraid of being different. I have never been afraid of being different; I don’t have the choice to be afraid, which I think is a blessing. So fitting in has never been something I’ve wanted to attain. I have always wanted to belong. I think that belonging means that people see you for who you truly are and accept you unconditionally. In the disability community, I belong. They see the impact that cerebral palsy has had on my life. They see all the fighting I’ve done. I say I’m disabled, and the disability community responds with, “Yes, you are.” There are also able-bodied people in my life who honor my experience, respect my identity, and listen to my perspective. I don’t have to fight against the stereotypes. I don’t have to fight to prove my needs. I don’t have to fight for my identity. Finally, finally, I feel whole.

I am disabled. My being disabled is not a debate. It’s not an insult and it’s not something I need to be talked out of. I have been told who I am and who I’m not by so many people, and I think it’s time to decide that for myself.

I am the one who lives in my body.

I am the one who knows how it feels to walk in my shoes.

Society should not get to dictate whether I’m disabled or not. It is my story and my choice. I notice the relationships I have with people who say, “I don’t experience this way of life. If you want to tell me, I’ll listen.” To these very special people in my life, your thoughtfulness means more than I can say. These people listen, they don’t define me, don't assume, and don’t unfairly label me.

As you can see, I strongly dislike labels I don’t choose. But the label of “disabled” is one I chose.

I choose community. I choose to stop being at war with parts of myself. I choose to embrace what being disabled means to me, not to other people and not to society. 

I’m far from perfect. I don’t have everything figured out. But this Disability Pride Month, I’m embracing the label. Thank you for letting me tell you what it means.

How Camp Dream Street Helped Me Feel Whole

     This past month, I went back to Dream Street, my summer camp for kids with disabilities, and participated in Great Expectations (a specialized program for teenagers with disabilities that fosters independence) for the second year in a row.

     I was so looking forward to it, not just because camp is a fun experience, but because of how I feel about myself when I’m there.

     During the 360 days of the year when I’m not at camp (generally speaking), I feel like an imposter. Because my cerebral palsy is mild, I appear able-bodied when I’m really not. However, many people don’t consider me “disabled enough” to deserve accommodations despite my diagnosis. I sit solidly between the world of the able-bodied and the disabled. I try to hide my pain because there is no explanation for it, and sometimes it’s just easier than dealing with people’s reactions. But the consequence to that is I am often perceived as able-bodied, and I am not. An entire layer of my identity is ignored. In the real world, I am not disabled enough to “count”, but I’m not physically independent enough to fit in.

     As “mild” as my cerebral palsy is, my differences are glaring around people who don’t have mobility limitations. The way I walk brings many assumptions with it:

     My life is lesser because I’m disabled.

     I need to be protected.

     I’m incapable of being independent.

     At camp, however, I am seen as a person with her own autonomy. My cerebral palsy doesn’t walk into the room first. At camp, we walk together. My disability is accepted as a part of me without detracting from my worth—which, as far as I’m concerned, is how it should be everywhere.

      No one assumes things about me. My disability isn’t invalidated, but neither am I smothered by people believing that they need to keep me in a bubble. I am given the chance to prove I can be autonomous at camp, but I don’t have to prove my needs. My pain isn’t put on trial; instead, everyone understands that I will do whatever is in my power to keep going despite the pain, and that doesn’t mean I’m faking it.

     I have felt inferior for such a long time because I have judged myself by society’s ideals of what both a disabled person and an able-bodied person “should” look like. I don’t meet either expectation.

     I am not judged for the things that I’m not at camp. There are so many people at Camp Dream Street, who make up a whole spectrum of disability severity. I don’t feel like the odd one out. So frequently, disabled people are expected to adapt to the world. At camp, people adapt to me. Maybe I’m not what people expect. 

     But camp taught me it doesn’t mean that the way that I am is wrong. 

     Going to camp teaches me so much about myself every year. I always knew that I wanted to do something meaningful with my life, but I could never picture exactly how I would get there. I wanted to go to college. I wanted to live on my own one day. Up until I went to camp, I had never met a disabled person who had done those things—which doesn’t mean that it’s impossible, just that there isn’t much of a precedent. And that scared me. I wondered if I had the courage it took to blaze my own path.

     This year at camp, I realized my dreams are possible. There are people at camp who have gone to college, people who have left the nest—women I look up to—and they have done it all while being disabled. I have so much more hope for my own future now. I can still follow my own path, but I take solace in the fact that a road has been paved for me to travel. 

     Speaking of roads, I was given the opportunity to drive! After my surgery in 2023, I lost sensation in my feet. This means that I can’t feel the brake. Before I went to camp last year, I thought driving was a milestone that I wouldn’t get to participate in, but there are options. At camp, I drove a van using hand brakes, which I got the chance to do again this year. I realized that my cerebral palsy is not always something I have to fight against in order to achieve my goals. Honestly, I believe that’s what adapting with a disability is—not endlessly pushing to do things in the same way as everyone else, but finding a way to be independent, even if that requires modification. In this case (driving), I can acknowledge that my CP makes some things more difficult, but that doesn’t mean I should just throw in the towel. A lot of times, if I were to say, “I have CP”, that would be the end of the conversation. But cerebral palsy—or any other disability—is not a hard limit at Dream Street. I can do things with my CP, not in spite of it.

     I think that’s partially why I love Camp Dream Street so much. I feel broken a lot of the time—like my needs are too much, and I am not enough. But at camp, I feel whole. My identity isn’t fragmented into pieces. I don’t have to hide my cerebral palsy or my pain. I don’t have to prove anything. I just have to be myself. 

What It Really Means to ‘Overcome’ with Chronic Pain

 Overcome. 

Overcome is a very strong word, and I have tried to live by it for as long as I can remember.

Growing up with cerebral palsy, I learned very quickly that if I didn’t figure out a way to adapt and overcome my circumstances, I would be stuck. I wouldn’t be able to pursue whatever I wanted in my life if I let my cerebral palsy hold me back.  

I also realized that people respond better if there’s a triumph. People expect that there is a way to conquer every obstacle, and for a long time, I thought that, too. I can’t count the number of times I have heard “so-and-so has [insert disability here] but was able to go on to achieve so much in spite of it!” or “he/she got sick or broke a bone, but they’re all better now!”

I see how much people need a success story. That became my self-appointed purpose, to inspire others by conquering every challenge CP threw my way. 

So I became the resilient girl, the girl who overcame. I always told myself that whatever challenge I faced at the time would pass.

For my major surgery, when I had to relearn to walk, I repeated over and over in my head, This pain is temporary. I will be able to walk.

When I was put into casts every week, my parents told me, “This is the mountain you’re facing right now. Eventually, it will get better.”

Every Botox injection I’ve had, when I tried to dissociate even inside my own body, I would promise myself, This is almost over. You’ve done this before and you can do it again.

While I will live the rest of my life with my cerebral palsy, the challenges it presents—surgeries, procedures, casting, etc.—are temporary. I know that I will conquer these challenges, one at a time, and I will overcome them.

And then, eight years ago, I developed chronic pain.

I have built my identity around overcoming whatever obstacle life throws at me. In fact, I derived my worth from overcoming obstacles. Chronic pain was the one thing I couldn’t triumph over. No matter what I did, my chronic pain remained.

I thought that knocking down my obstacles was my purpose. If I couldn’t do that, where was my purpose? I felt that my identity had gradually disappeared and left in its wake a girl who had no idea what to do with herself. Chronic pain had already taken so much from me—sleep, concentration, the ability to do some of the things that I loved—and I desperately didn’t want it to take my identity away from me, too.

The longer I’ve lived with chronic pain, I’ve realized that my identity has to change. Overcoming chronic pain has to look different than overcoming my other challenges. Right now, my chronic pain is indefinite, and there is no amount of grit, determination, or sheer willpower that can conquer it. 

So that begs the question: What do I do with it?

If there is nothing in my power that can help me conquer this, how do I deal with it?

I have to find a different way to overcome.

I have to overcome my chronic pain day by day—I have to learn to live with it.

I’ve wrestled for a while with how to overcome my pain. For so long, I’ve been the girl who is strong. I’ve been the girl who adapts.

I love that girl and I would never want to change her.

But I’ve also been the quiet girl, who constantly apologized and was ashamed of what her body asked for. That identity meant safety for a while, but I don’t have to be that girl anymore. I don’t want to be her anymore.

With that in mind, here are four ways I can overcome chronic pain, even if—especially if—there is no end date.

1. No apologizing for things that are out of my control.

I do this all the time—to my parents: “I’m sorry my pain won’t go away”, “I’m sorry my answer to ‘how are you feeling?’ doesn’t change?”, to my teachers: “I’m sorry I need help,” to my friends: “I’m sorry I can’t stand with you.” I apologize constantly for my body’s limitations, and it is draining. I apologize because I am deeply ashamed and I feel like a burden. 

But my body’s limitations are not my fault.

The people who love me will never view me as a burden.

When I apologize, it reinforces that I need to apologize. I can’t change my body. I can’t change my pain. It’s time to stop apologizing for that. 

I no longer want to be someone who apologizes for things out of her control. 

2. Stop resenting myself for what my body can’t do.

Chronic pain is difficult enough on its own. If I carry around constant resentment of my own body, I will become bitter very quickly. Also, it’s not fair to all the effort I’ve put in and all that my body has been through to resent it. 

3. Do what is best for me, regardless of what other people think.

The things that help my chronic pain are not always as under-the-radar as I would like. I started bringing a heating pad to school because it turns the dial down just a little on my pain. I’m not sure what people think—maybe some of them think I’m dramatic. They might think it’s weird, and a few probably do.

I haven’t stopped caring what people think. But part of overcoming my chronic pain every day is my decision that my health is more important.

4. Don’t allow my pain to take more from me than it already has.

My pain has taken enough—sleep, concentration, the ability to ride in a car for a long period of time, and some of my control. I will not let it take my happiness. 

I don’t know if my pain will ever stop. I can’t wait until I’m not in pain anymore to be happy, because that day might never come. I am determined to live as fulfilling of a life as possible—if I have to do that with pain, so be it. Not in spite of my pain, because that’s not what overcoming an obstacle is. Overcoming a challenge means that life has dealt you a difficult card, and you live your life with that card anyway. 

I may not be able to control how much pain I’m in on a day-to-day basis. I can’t control what my body is able to do. But I can make the choice to wake up every day and keep going, and that’s what I choose to do.

Overcoming chronic pain isn't necessarily about eliminating the pain. Overcoming chronic pain is about continuity, not triumph. 

The four things above may not seem like a big deal to you. But to me, they make the daily battle of living with chronic pain just a little bit easier. And choosing to fight that daily battle, even if it is never truly “won”, is what I believe overcoming with chronic pain really means.

If I Could Speak Honestly to My Body, I Would Say This

I wrote this open letter to my body because I’ve been struggling with my relationship to my pain. My chronic pain has spread and I have wrestled with anger and continuous grief while trying to reevaluate my identity. I also wanted to honor everything my body has been through and done for me. This letter feels like the most honest thing I’ve written in a long time. 

Dear Body,

I know. I know you’re hurting. I feel you. I’m so sorry. I’m sorry you have to hurt. I honestly feel more compassion for you than I do for myself at the moment, because you seem almost outside of me sometimes. I’m sorry that I felt no choice but to separate from you. One of my biggest fears is that my identity will always be wrapped up in you, and I am so much more than any ability I have. 

I’m sorry for all the things you’ve had to go through. I know you didn’t ask for all of the painful injections, unpredictable procedures, therapy treatments, and numerous medications, and I know it’s not your fault that you needed them. I realize now that you didn’t get the help you needed, and you had to support the left leg all on your own. Considering that, it’s a miracle you could hold the pain off as long as you did, and I thank you for that. 

I resented you for so long. All that you couldn’t do, the fact that you made me different. I didn’t realize how hard you had to work just so I could move with at least some vague sense of normalcy. I didn’t want to work with you because you wouldn’t cooperate with me. All that time I was fighting with you I was really hurting myself.

My frustration with you made me push to the limit at times. Looking back, I’m sorry you had to be on guard. You shouldn’t have to be on guard from me, but I was so determined to prove that you could not hold me back. I chose to push you past your breaking point instead of sacrificing my dignity. 

I miss how you used to be, but I also understand that you can’t hide the effort it takes to move anymore, and you shouldn’t be expected to. I know that my chronic pain is simply an alarm you can’t turn off. You’re trying to protect me because you can’t predict what will hurt next, and you want to brace for impact. 

As I’ve gotten older, I’ve realized that most things come with a price, especially in a body like mine. 

The price you had to pay to protect me was pain. 

And now the pain signals won’t shut off, but it’s not because we did anything wrong.

The alarm is still there because you did what you had to so I could function. 

But you don’t have to protect me anymore. I am no longer the nine-year-old girl I was. I am no longer the stubborn child who resented and pushed every way I could. (Well, maybe I am a little bit.) You can let go now. I’m stronger than I was, and I’m definitely strong enough to know how to protect our physical limits. 

I am so innately connected to you that I couldn’t ignore you even if I wanted to (and believe me, sometimes I really want to). I know every scar, every nerve and muscle (even if I don’t know all the names yet) of you and how you react. I am so tuned to your every impulse that it’s like I’ve lived with you for 80 years instead of just 17. 

And that’s the key, I guess. I’ve lived with you. You are not my enemy and I am not yours. We’re stuck together on this journey called life, whether I like it or not. 

And to be fully transparent, I don’t always like it. This body comes with terms and conditions that I did not agree to. I have lost so much because of the way you are. I have lost the ability to sleep, concentrate, sit for a long period of time, and just to be a carefree teenager. Other people’s bodies do not protect them in ways that sometimes feel more harmful than helpful. Other people do not live in severe pain every day just because of the wiring of their nervous systems. I know it’s not easy to be my body. But I need you to let me go. I need you to trust me.

It’s okay to grieve what you had to do to protect me. I’m sorry for that sacrifice. But you don’t have to hold that burden anymore.

I promise I’m trying to do what’s best for us. You’ve tried to take care of me the only way you know how, and now it’s my turn to take care of you.

I got this. I’m our biggest advocate, and I can’t afford to let you down anymore. More importantly, I am not going to let myself down.

Ainsley