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It Wasn’t Until I Found Others In The Disability Community That I Felt Seen

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Narrated by Kelly Dawson

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The disabled community makes up one in four Americans, which means their lives are intertwined within the spectrum of all relationships. We’re focusing on the ways in which disability is intrinsic to everyday life, and how everyone is connected to it as part of the human experience. 
Everyone deserves the chance to belong. It’s an understandable sentiment, but when you’re disabled, it’s often easier said than done. Public spaces aren’t always built to welcome our bodies, and even when there are accommodations, social perceptions tend to keep us at a distance. So even when disabled people want to belong, and try to belong, it can be a challenge.
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That’s why forming relationships within the disability community can be so important. There’s friendship and camaraderie in this space, of course, but there’s also an undercurrent of understanding. Knowing that other people share your experiences can be a lasting comfort.
I grew up feeling like I didn’t have a place in society, and it wasn’t until I found others in the disability community that I felt seen. The connections I’ve made helped me to say, "Oh! It was never just me!" and to learn more about how this community has a deep and significant history that has made society a more equitable place (curb cuts on sidewalks are one everyday example of how access can benefit everyone). 
I talked to three other disabled people about the ways they define community and how it has enriched their understanding of themselves and their peers. I also asked them what they wanted non-disabled people to learn about their place in the world so that the chance to belong more widely could perhaps become a reality. Here’s what they had to say. 

Brooke Crume (She/Her), 27
Disability: EDS/POTS/Endometriosis

What is community?
I think it’s finding others and connecting through common experiences. It’s curating safety for others using the privilege I have as a white woman in this space. It’s people who bring laughter into life and show me the empowerment and connection that we can find in one another.
How do you determine who is a part of your community?
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I’m a fan of those whose names were always picked last in gym class. I gave us the term "sickos and weirdos," which to me is about reclaiming our worth. I am literally sick, and other neurodiverse kids are also seen as "weird" because they’re not understood by other kids or even by the adults around them. I gravitate toward the underdog, especially socially and in society. I like the people who have the bravery to be exactly who they are, in the exact place that they are. In fact, the only people I don’t let into my curated community are those who wish to do intentional harm.
Is there anything you wish your community knew about your disability?
I am only here because the disabled community exists. They save me every day; I doubt all of them know that. It’s not so much about my specific disability most of the time, as much as it’s all about them knowing how much their existence means to me. I see them, I hear them, I love them and I need them. The best thing you can do for your community is to care for yourself first. Heal yourself, heal the world.
Have you ever experienced a lack of community?
Community to me is symbolic of family — I’ve never really felt either of those my entire life. I think our chosen family is just as important as our bloodlines. At my own personal rock bottom, my brain tells me that I am alone and unloved. My community taught me that if I am in need of love, I simply must just go give it to someone else. Love always comes back that way. 
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Cece M. (She/Her), 32
Disability: Deaf 

What is community?
Being around people who make you feel comfortable about yourself. It's a connection, whether the group is composed of different people with different backgrounds and cultures or not. They can complement one another with their own skills. 
How do you determine who is a part of your community?
People who are willing to learn, hold themselves accountable and make me feel comfortable and safe to be around.
What makes you safe in your community as a disabled person?
Anywhere that people treat me as human, without the need to have to help me 24/7. Most of their help is not exactly helpful, it makes me feel useless. I feel safe when they don't try to make me sound like a hearing person (acting as if my hearing aids have "cured" my deafness) and just accept me the way I am.
Is there anything you wish your wider community knew about your disability?
I wish non-disabled people would stop believing false stereotypes around deafness: that all deaf people are mute or all deaf people aren't able to do simple things like listen to music, drive or even learn another language. There is so much misinformation and lack of education around deafness, but the easiest way to fix that is to listen to us about how harmful those stereotypes can be.
Have you ever experienced a lack of community?
All my life people constantly made me feel invisible. I felt like I didn't belong anywhere. Honestly, those moments taught me an important lesson: I learned how to enjoy myself. I learned how to get to know myself, how to deal with [my] emotions, hard situations, even bullying. It helped me build the emotional intelligence that I have today. It also helps me to make sure that others around me feel comfortable, because I don't want them feeling the way I did.
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Andrea Lausell (She/Her), 29
Disability: Spina Bifida

What is community?
Community is where you find people of similar experiences, understanding and acceptance. Community is something you're born into and also something you find as you go through life. It’s communal helping so no one goes unaided.
What makes you safe in your community as a disabled person?
It’s when people are patient with me whenever I speak slower at times because of how my brain works. No one tells me to "get to the point" or asks why I look up a lot when I talk (like when we're on video chat). That understanding makes me feel safe.
How does your community accommodate your needs as a disabled person?
Mostly by keeping a schedule with me. I need constant scheduling to help me accomplish my daily tasks so friends who check in and ask me if I have time or energy really helps.
Is there anything you wish the wider community knew about your disability?
There isn't one way to have spina bifida. While many people who have spina bifida are wheelchair users, many of us also walk independently, wear crutches or use a cane. Stereotyping this disability as "everyone who has spina bifida is in a wheelchair" can prevent the rest of us from accessing the care we need and deserve. 
Spina bifida has the nickname of the "snowflake disability," meaning that even if two people have the same type of spina bifida, how it interacts with each person will not be the same. That's important to remember when interacting with our community.
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Have you ever experienced a lack of community? 
I used to feel a lack of community as a child. I never really got to see others who were disabled and I think that's just because of access and money. My parents' focus was raising my sisters and I, and keeping me alive. I had more community within the Latinx cultural community, so that helped. I felt sad about it growing up but now I don't think too much of it. I have a community now and that is what matters to me.
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Angel Powell is a writer from Western New York. You can find her on Twitter @angelbrittanyxo.
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