Erasure of Disabled Identity- Part Two

Lori is a blogger, model, and creative who lives with the rare condition - Ehlers Danlos Syndrome. She writes about topics such as mental health awareness, disability advocacy, and body liberation.


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If you wish to find out more about Lori, you can read her blog posts on her website, follow her on Instagram and Patreon.


This is the second part to Lori’s two part series on erasure of disabled identity. Before you start reading this one, check out part one!


Approximately one year ago, I started to hear disabled creators talk about how they suspected they were being suppressed by algorithms because of the type of content they produce, as so many individuals from the same community where being unfairly targeted, and their engagement insights dropping. Whereas able bodied creators discussing related topics from an abled perspective where thriving - even if their content was less tame.


Understandably this was a concerning thing to hear about, as it meant that algorithms were either unintentionally or intentionally targeting and suppressing disabled creators in particular - especially disabled BIPOC individuals.


A few months ago I noticed a few Instagram accounts I follow were starting Patreons or migrating to different social media platforms because they simply felt that the effort they were putting into their content was too much for the limited reach it was having, however in December the platform announced they were going to be making changes to their terms of use, and this was particularly unsettling for many individuals in the body positivity, mental health awareness, and disabled communities - and as someone who identifies with all three, I was stressed to say the least. I reached out to a fellow disabled creator and we started to discuss an action plan and brainstorm ideas to be as careful as possible on the app, to avoid being erased as other accounts were reporting.


Aside from my insights dropping, my core audience was still very much active and present, and as the community had somewhat sounded the alarm to help support accounts and the work they did by engaging with, and boosting their work, everything seemed fine.

But on the morning of December 29th, I awoke to a text from my best friend saying that my Instagram account had been removed.


Initially I felt a surge of panic as this fear had been residing in the back of my mind, and I had been as careful as I could without shying away from important conversations about disabled life. The only explanation as to why this action had been taken was a pop-up whenever I tried to log in to the account, letting me know the account was disabled (the irony) for violating terms of service. Yet this in itself is vague and a guessing game to decipher which exact term you had breached, as the app withholds the right to disclose why they decided to remove the account.


However at this point I felt relatively optimistic and hopeful that I could get my account back, yet as the days passed with no response to the many reports myself and close friends had filed, I started to lose hope.

Deplatforming my work, and the audience I had accumulated after three years of hard work and dedication left me feeling like my work had no value, and that should I start again, I would be fighting a losing battle. Admittedly I was angry, especially seeing as so many able bodied creators - much larger than the following I had - seem to get away with content the same as mine, or more explicit than my work has ever been - even though it was still valid.

However as time went on, I realised that I longed to get back to what I love, which is writing - and I truly missed my chronic illness friends, who I have the pleasure of knowing and adoring - so I started a new account, posting the same content I would have done previously - with a few tweaks.


I don’t believe that silencing myself on issues I feel are important to create positive and proactive discourse around would be a productive, or healthy thing to do - especially gauging the overwhelming response of support from the community, who are always so receptive and pleased to see topics such as disabled body politics, and sexual well being discussed; considering the community are often left out of these conversations in the mainstream. Yet I still don’t want to risk losing an audience again if I can help it - hence why I took a leaf out of other creators' books and started my own Patreon, and reconnected with the core reasons why I started my blog in the first place.

As a firm believer in finding the silver lining in every cloud, I’d like to finish this post reflecting on the primary lessons I have taken from this experience.

  1. Even though your feelings of sadness and defeat are valid, and worthy of support - these feelings are only temporary, affirm your worth and reach out to your community, because you are appreciated and supported.

  2. Your art has value, and as a disabled creator - just because you may not be able to produce work at the same pace as your abled counterparts, your value is not lesser than for it.

  3. You truly do grow through what you go through, take each day at a time and remind yourself of all the times you have overcome obstacles and difficulties you thought undefeatable.

Read a blog post I published to discover “How to support your disabled creators”


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