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Community

February 27, 2023 by Disability Rights Iowa

by: Allie Tubbs and Katelynn Schultz

A large group of people congregate in a conference room all facing a speaker. The speakers back is to the camera.

Whether you proudly claim your disability or are still exploring your identity, the disability community is one of the most inclusive and encouraging communities. 

Community is personal strength – where many individuals find purpose, find safety, find connection. Community to many is like a nice hug, a warm bath, a squeeze of a stuffed animal, the paw of a pet, or the gurgle of water running outside. Losing a community can feel like losing a part of our identity. Gaining a community? That can be the validation of self many people are desperately searching for. 

Finding your community can be very difficult. There are more than 1 billion people with disabilities in the world. These 1 billion people include people ranging in age, ethnicity, language, and numerous other identities. These people might not be able to travel due to their disability. These people might not verbally communicate with each other. These people might not intellectually approach a problem in the same way. This diverse group of people combine to form one of the strongest advocacy communities by meeting in the most accessible place where they hold the freedom to share their perspectives: social media. 

There are endless groups to join on numerous different platforms. How do you pick the best social media community for you?

I ask myself: “Do I want to be in a group focused on my love of books, my local neighborhood, my passions, my favorite dogs, or … do I want to be in a group of people who understand my disability?”At first, it feels like an automatic no. No, I do not want my disability to be my defining characteristic. What disability would I even choose? Disability is so widely varied between individuals – how would I even know how to carry a conversation with anyone else like me? They might have different experiences than me. They still might not understand or like me. Wouldn’t it be worse if the people who are supposed to be similar to me rejected me and my experiences? 

These questions all raced through my mind as I dipped a very hesitant toe into my exploration of social media. But I joined the groups anyway. All of them. Based on my high school graduating class, based on my college class, based on the community I live in, based on my dogs, and based on- yes – my disability (each of them). For a while, each of these groups served to support a portion of my identity. But I left each group as they started to feel negative or isolating. 

I left my high school group because we all grew apart.

I left my college class group because I was always friends with people outside of my class.

I left the neighborhood group because I moved.

I left the dog groups because it felt too judgemental.

But I stay in my disability groups. 

The social media groups teach me about my disability: treatments I can do at home, various techniques and tools to lessen my pain, and testimonials about what to ask for when visiting the doctor. They point me to which doctors listen and which ones gloss over disability. They safeguard me from the traumatic doctor’s appointments where the doctor goes straight to asking, “Have you tried exercising?” I find people who understand when I cancel plans due to pain or simply being out of spoons for the day. They understand why I skim articles too fast to comprehend them. They sometimes even understand me better than I do myself. My community members talk about their experiences, which sheds light on why I act the way I do. In the most welcoming and unexpected way, I found community.

On social media, the disability community isn’t concerned about perfect people with perfect lives. Rather, they unapologetically tell the truth. They tell their realities of having a disability and in doing so, I have finally found a place where I can do the same. Ever since joining this incredible online community, I’ve since expanded my participation and kept up with people who not only have my specific disabilities or assumed diagnoses – but people with other related or non-related disabilities. I relate, I learn, I share comedy, I belong in a space of sharing and caring. My initial fears of being excluded and isolated as I have in every other community before have long been forgotten. In finding this wonderful online space filled with hardworking, ingenious, and empathetic people with disabilities, I have not only found my community, but my community has helped me find myself.

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