I love using my blog and my Instagram to share my life. I’ve met some incredible people who I now get to call friends, I connected with the disability community in a way that kind of changed my life, and I get to help people understand a little bit more about disability by sharing my real-life perspective. It’s been exciting, and even more exciting to (slowly!) grow my online presence to reach and connect with more people. I want to keep growing it – I’d love to really be able to turn it into a job. But being disabled makes things a little bit trickier sometimes – I want to share a little more about being disabled while on social media.

Last week, I was reading Grace Atwood’s interview in the Gloria newsletter (it’s great – make sure you read the whole thing here!). This question, and Grace’s answer, really stuck out to me:

Speaking of challenges: What would you say is the hardest thing about your job?

The photos and the video and creating all of that; balancing it. It feels like something is added to our plate every day. I consider myself a blogger and I want to have a new blog post up every day on my site. But Instagram – first it was just a grid post, so it was pretty easy to have a blog post and a grid post up every day. Then there’s Stories, and along with Stories, people can reply to your Stories, so you have to reply to those messages, too. Then Instagram’s like, yeah, actually I want you to do Reels, too, and we’re not going to show your content to anyone if you don’t post for a while. I went from getting like 5,000 likes on a photo to getting maybe 500. 

If I take a day off, Instagram will show my Stories to half as many people as they usually would. So now I have to post everything I’m doing over the weekend and like, god forbid you want to lay on the couch and watch movies all day. Then you have nothing to say.

This is something that I think about – and struggle with! – all the time as I’m working to grow my blog and my Instagram. Obviously, this is something that everyone on social media struggles with – there’s always something knew to adjust to, whether it’s a new feature, or a change in the algorithm, or just a new fad going around. But being disabled adds an extra layer to it – at least for me.

Every time a new feature comes out on Instagram, I have to figure out how I can make it work with my life. Even to take a regular photo or video, I have to make sure someone is around to help me get dressed and ready, help me set up the photo, and take the picture. I basically only take photos at my house, or out if there’s already somewhere I’m planning to be – I never go somewhere just for a photo shoot. The logistics of that are just way too complicated to make work – so many pieces have to fit into place to schedule going out somewhere. And this is just for a regular, run of the mill picture.

But like Grace mentioned, pictures aren’t enough anymore. Reels are the thing now. A big thing on reels is changing outfits and coming up with fun transitions – “hopping” into one outfit from another. Getting dressed isn’t a super quick thing for me – it takes a few minutes to get dressed and get everything adjusted properly! So something that included three or four outfit changes would take me more than an hour to film. And I’d need to make sure someone (so… probably my mom!) was also free that whole time to help me change. And clearly – the hopping thing isn’t happening!

Obviously, there are other ways to be creative, and to take part in reels and videos and trends in a way that works for me and my abilities. But it’s always that extra step of trying to figure out how to, once again, make my disabled life “fit” into the norm that Instagram and social media in general are pushing on me. Because the way algorithms work is that you either adapt and find a way to participate, or you get left behind.

And it goes beyond algorithmic trends – it all goes back to Grace’s last sentence in this answer, about having to be “on” all the time, about having to constantly push out more content to stay relevant. This is where I struggle the most. Because spending a day watching TV and resting? I know that my body needs that on the weekends more often than not. In fact – other than writing some blog posts and reading, that is exactly what I did this past weekend! I wore the daytime equivalent of pajamas, didn’t put on a stitch of makeup, and left my hair in a very sloppy ponytail. My body needed rest, so I rested. But none of that makes riveting content for my Instagram stories at all! I can’t exactly story episode after episode of Veronica Mars.

So I’m constantly caught between my need to honor my body and my physical needs, and my efforts to keep growing online. Over the years, I’ve learned the importance of listening to my body – when it tells me that I need to rest, I take it seriously. There’s no amount of extra followers, or no audience size, that would make it worth it for me to put my health at risk. But that doesn’t mean I don’t get frustrated, knowing that I physically can’t do all of the things I “should” be doing to keep growing. I would keep writing even if only 10 people read my posts – that’s exactly what I did for the first few years of blogging – but it doesn’t mean that I don’t want to reach more people. I know that it’s hard for anyone on Instagram to grow their following, but I do think it’s even more of a challenge for disabled creators.

This is why I always encourage people to seek out diversity in their feeds, and not just wait for it to come find them! There are so many incredible diverse creators out there making great content – search for them, follow them, learn from them! And it also makes me feel extra grateful for each and every one of you who are following along with what I share. I appreciate this community so much.