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.