Disability, lifestyle, and nerdy thoughts.

Finding my place in the online disabled community

I have never experienced life without a disability. My disease was present at birth. Yet every day when I scroll through my Twitter feed, it seems the opposite is true for almost all of the disabled content creators and folks leading conversations about disability. I always felt very isolated and underrepresented. Sometimes, the disabled community leaves me with a similar feeling.

I have never experienced life without a disability. My disease was present at birth. I never took my first steps or learned to ride a bike. I also never knew any other way of life. My disabled body is my normal and it has been a constant. Yet every day when I scroll through my Twitter feed (side note, have you followed me yet?), it seems the opposite is true for almost all of the disabled content creators and folks leading conversations about disability.

I recently watched a video by Andrea Lausell, a content creator on Youtube with Spina Bifida, where she spoke about how she felt excluded in the disabled community because she doesn’t have a ‘before’. Just like me, she was born with her disability.

I’ve actually been having the same feelings for a little while now. I was really excited to see people talking about it and I wanted to share my thoughts on the matter, too!

For most of my childhood, I didn’t have any disabled friends or influences. I’ve always been obsessed with fictional characters, so I always kept my eye out for characters in wheelchairs in books or on tv. I found a couple, a book or two, a movie on Disney channel. I had a hard time figuring out why at the time, but they never felt right. They never looked like me, their lives were never anything close to being like mine.

Growing up, I always felt like I didn’t have the kind of story anyone wanted to hear about. The disabled people on tv were strong athletes or soldiers who overcame their disability. They were the independent wheelchair users who didn’t need or want any help. Successful adults with full time jobs, loving spouses, and their own place.

There I was, small and weak. Someone who needed help with everything. Someone who was born disabled that would not only never ‘overcome’ their disease but would actually progressively get weaker and weaker. I told myself that no one wants to talk about that. That’s not a story that makes anyone feel good.

I always felt very isolated and underrepresented. Sometimes, the disabled community leaves me with a similar feeling.

It wasn’t until adulthood that I found the disabled community online but when I did stumble upon it, I instantly felt connected and so excited. I learned a ton about disability right away, most notably, how incredibly diverse it is. I was introduced to the spoon theory and spoonie culture, and I read so many articles and twitter threads on invisible disabilities and chronic illnesses.

I have never experienced life without a disability. My disease was present at birth. Yet every day when I scroll through my Twitter feed, it seems the opposite is true for almost all of the disabled content creators and folks leading conversations about disability. I always felt very isolated and underrepresented. Sometimes, the disabled community leaves me with a similar feeling.

And I loved it! I loved seeing so many different stories and seeing perspectives that were so similar to mine yet completely different. It was sort of the first time I saw people embracing their disabilities and being proud of them. From that, I learned how to embrace my disabled life, I learned how to be proud of my wheelchair and my Muscular Dystrophy.

Honestly, it’s a little strange. I definitely feel much less alone now, and yet I haven’t quite found my place within the disabled community. It feels so focused on the concept of having a ‘before,’ and that leaves me feeling lost.

Like Andrea says in her video, those conversations are valid and important. There are so many people with those experiences, and they’re definitely stories worth telling. They can help people learn about their own disabilities, validate their thoughts and feelings, provide them with representation, and a million other positive wonderful things.

I still relate to people who weren’t disabled from birth like me. I don’t think that I need to have the exact same situation as everyone to be a part of a community, nor do I think that anyone I follow on Twitter is treating me like I don’t belong.

But at the same time, it seems like so much of the Twitter/Youtube/Blogging community is out of reach to me. I can watch and support, but I don’t have anything to contribute. The majority of discussions center around people who became disabled later in life, and I can’t add to that. There was never a time when I never had to fight for my diagnosis. I never had to adjust to life in a wheelchair. I’ve always had Muscular Dystrophy, so I never had to mourn my old life or abilities.

I don’t have a before, and in a way that has made me an outsider. Sometimes I struggle with the feeling that I’m still only an observer even where I feel I belong the most. I never feel like it’s the right time for me to jump into a conversation. How do I join in when it seems like it’s not my place to? I don’t want to step on any toes or force myself into a discussion that wasn’t meant for me.

I don’t fault anyone. It’s not that anyone has done anything hurtful or wrong. I hope that it doesn’t come across like I’m pointing fingers or placing blame on anyone. There’s no blame to even place!

I’m not sure why it seems so off balance, maybe ‘disabled from birth’ is the minority. Maybe I just need to follow more people, I don’t know! I do know that we could all benefit from being exposed to different perspectives. I learned so much from a group of people who became disabled as adults. I’m sure the same would be true the other way around. Everyone has something to offer or share with the community. We just have to give each other the opportunities and space to do so.

I’ve always felt like having a disability is a sort of inherently isolating experience (I’m planning on writing a whole post about it), but it’s not the same as when I was growing up. With social media playing such a huge role in our lives, no one should have to struggle to find their place. It would break my heart for disabled kids to find our community online, which I genuinely think is incredible, and still feel like they don’t fit in or have nothing to contribute.

When a community is as big and amazingly diverse as the disabled community is, the conversations we’re having should be just as diverse!

I hope that this is something we can all continue to talk about and that together we can make our community more inclusive. It’s been my experience that disabled people tend to stick together and support each other as much as possible, so I know we’ll get there!

I know I didn’t really offer any solutions, but let me know what you guys think about this! Do you feel the same way or totally different?



1 thought on “Finding my place in the online disabled community”

  • Hi Karly,

    I saw you tweeting about wordpress and thought you might be interested in my new plugin WP Tag Machine and just for $2.

    With WP Tag Machine you can 100s of Top Google Rankings Without Building Any Backlinks…

    See how it works: https://goo.gl/ZjvrTN

    Keep making great stuff!

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.


%d bloggers like this: