The Xitter Exodus and What it Means for the Disability Community
Disabled and chronically ill people have long used Twitter/X for community, fundraising, companionship and support. With folks leaving in droves - where will we go and how can we stick together?
It’s time to talk about the elephant in the room - Elon Musk, Trump and the fall of Twitter/X. The site has become largely unusable and looks poised to become a bigger version of Truth Social.
As a result - many users are deleting their accounts and moving over to BlueSky and/or other alternatives like Substack and Mastodon. They’re voting with their feet and telling Musk they won’t stay on a site that’s become not only unsafe - but hateful, cruel and full of disinformation. If you don’t understand just how bad the site has become - please read this brilliant summary from
The problem is - the disability and chronic illness community can’t leave as easily as their non-disabled counterparts. Many are scared that they’re losing one of their main lifelines for support, companionship and information.
We don’t want to leave anyone behind. I want to make that clear. The disability community needs to stick together now more than ever - and they’re completely justified in being fearful that they could lose support they’ve spent years establishing.
I wrote a thread (ironically on Twitter) about this - because I’m starting to see people within the community lash out at each other. Those who are leaving are upset others aren’t following - and those who are staying think it’s wrong that people are leaving.
We Must Stick Together
That site is divisive enough without us criticizing one another. I would like us to all take a collective deep breath and agree that whatever we do from here - we will do it with kindness and consideration for one another.
The vast majority of disability advocates are sick themselves - they’re struggling with the migration too. Shame and stress can cause physical harm - and that is doubly true if you’re chronically ill. We need to be careful not to burn out - because we’ve got a big fight ahead of us.
Personally - I’m struggling to remain on Twitter. It gives me no pleasure to say this. It was always my favourite social media site. I never ‘got’ sites like Instagram, Snapchat or TikTok. I’m a word girl at heart.
I’ve been there for 15 years. I wouldn’t have had my career in journalism without that website - which allowed me to make connections and helped me land freelance jobs. Most of my lifelong friends came from conversations I had on Twitter. I’m devastated by what it’s become.
That devastation doesn’t change reality. It’s toxic and the majority of my engagements are threats, slurs, insults or bots. I’m bleeding users - and when I DO gain some back they’re almost all fake accounts. Currently I have DMs from Hugh Jackman, Elon Musk x 3, Keanu Reeves and more Nigerian princes than I can count.
It takes a tremendous amount of spoons to sift through all the noise to find the genuine engagement - and it’s spoons I simply don’t have.
So why do I stay? I stay because I’m acutely aware of the pain of losing community. Of feeling abandoned. Of being too sick to contemplate ANY change and wanting to cling to the status quo.
I don’t want anyone to feel left behind - so I’m trying to straddle multiple places. I’m positively exhausted. I don’t say this for pity - but simply to remind people that many of us spend the only spoons we have on trying to educate, inform and support others.
Trying to do it on multiple apps takes time and energy that we may not have to spare - and if we expect advocates and community members to continue juggling multiple websites we are going to burn them out. I know. I’m almost there myself.
Image Description: A photo of a person wearing all black walking alone down an empty road.
It’s not sustainable.
I can understand the reasons for staying. Sunk cost fallacy is huge.
People have put a lot of precious time and energy into building a following. They may or may not be reliant on it for a source of income or mutual aid.
They may be afraid to lose community and access to information. Many are too sick to learn a new platform and/or feel like none of them provide the same type of service, diversity and community.
As for those who are leaving - many are doing so due to the punishing nature of the algorithm, which heavily favours far right accounts and throttles almost any mention of other social media sites, Covid, the pandemic, masks or anything that is an important issue for marginalized and disabled individuals.
Others are too disgusted by Elon’s behaviour during Trump’s campaign to remain on the site. There’s also the issue of safety. Elon removed the block functionality and now users have no control over who can view their posts - or over what they see in their own feed. The result is endless trolling and abusive pile-ons that are hard to contend with. It’s troll whackamole every single day - and who has time for that?
There’s significant privacy concerns and data collection policies which are getting worse by the day. The latest update allows the platform to use your data to train AI - and has a clause giving Musk permission to SUE YOU for breaking terms of service. I encourage people to read through the details if they’re choosing to remain on that platform:
Image Description: A screenshot of a tweet from Caroleeenalala. Text linked in footnotes due to length.1
Lastly - because the platform has become so rooted in AI - there’s virtually no support if something goes wrong. I see many people who don’t want to leave because they don’t want to give up their large followings and start over - and while I can completely understand that - please realize you could lose access at ANY time.
Professor Kim Prather recently went through this - and kindly gave me permission to share her story.
Her account was hacked - and the people who took it over started offering iPads and iPhones and frauding people out of their money. When Dr. Prather realized this - she immediately tried to contact support for help. They did nothing. She established a second account to warn people that her main account was compromised - but of course that account was throttled and shadowbanned. The people behind her hacked account even BLOCKED her from viewing her own profile.
This went on for weeks - with Dr Prather repeatedly reaching out to support with proof that she was who she said she was and her account had been compromised. They repeatedly told her everything was ‘fine’.
It did finally get rectified - but at what cost? She has over 90k followers. How many possibly lost money and/or had their accounts compromised too?
The reality is the once helpful support department has been replaced by exceedingly unhelpful AI. We are all at risk of losing our access at any time - whether it’s because our account gets compromised or we are banned for some ‘violation’ that Musk unilaterally decides we’ve committed.
I encourage people not to wait until something like this happens to them. Chronically ill folks will not have the spoons to deal with the back and forth nonsense that Dr Prather had to cope with. The sooner you establish a presence elsewhere - the better. You will - if nothing else - have a back up should something go terribly wrong.
Image Description: A twitter screenshot from Kimberly Prather Ph.D that shows she’s blocked from following kprather88 (her original account)
Where Do We Go From Here?
I think the reason folks are upset is because communities are fracturing - and we depend on community for our very survival (not to mention comfort in these isolating times).
So what can we do? First - let’s all agree not to shame or blame people for their choices. Let’s also be willing to recognize the writing is on the wall with respect to where twitter is headed and the sooner we rebuild the better it will be for all of us.
Let’s commit to making the alternatives as accessible as we can. To shepherding people through this transition so that it doesn’t take more energy than necessary. We have to be mindful of how sick people are - and that everyone has a different level of function and tolerance for change. Whatever we do - we want to try our best to not leave ANYONE behind.
Where Are People Headed?
The most obvious alternative - and the one that seems to have the most potential for the disability community - is Bluesky. There’s been a huge migration over the last week - and it currently shows no sign of stopping.
There’s a strong disability, chronic illness and neurodivergent group there - and the culture is one of accommodation and inclusivity. It also functions in a similar manner as twitter so the learning curve should be minimal. If you want to find me there - I’m https://bsky.app/profile/broadwaybabyto.bsky.social
Image Description: A white box with a blue butterfly and black text that reads: Bluesky
Bluesky is a unique opportunity to ‘build back better’ as they say. It’s still in its infancy - with a culture all its own. While it shares many similarities with twitter - it’s distinct because it rejects the ‘aggro culture’ that dominates many conversations on the bird site.
Bluesky doesn’t encourage arguments - in fact their block function actively discourages rage baiting and incessant (and unproductive) back and forth. Trolling is extraordinarily minimal as a result - because it’s virtually impossible for trolls and bad actors to gain traction.
If someone comes into your post with negativity, sea lioning or other common trolling tactics - they disappear when you block them. Not just for you - for EVERYONE reading your post. It’s a way to ensure people don’t get trapped in an unrelenting loop of negativity - and it’s pretty awesome for mental health.
I would argue that the culture there is better for disabled and chronically ill people for this very reason. It’s a safer, healthier and more inclusive space. My nervous system is infinitely less stressed when I’m scrolling the sky - and the people I’ve met and connected with are smart, compassionate and engaged.
I’ve heard concerns that it will become a left wing echo chamber - but I don’t think that we need to worry about that. People with all manner of views are welcome as long as they’re RESPECTFUL.
That is the key difference. You want to disagree? That’s fine. Let’s have a kind discussion. Respect is exactly what is lacking on twitter. It’s just people (and bots) screaming at one another - yelling into a void - or wasting huge amounts of energy in arguments they will never win. Whether you recognize it or not - it’s draining. We need to save all our energy for the fight ahead.
Which Brings Me to Starter Packs
If you aren’t familiar with Starter Packs - they’re a fantastic tool to help you find your people on Bluesky. Anyone can create a starter pack - and there have been many new ones in the last week alone.
Those who are worried about losing their community if they leave Twitter should breathe a sigh of relief when they see these packs. Many of us (myself included) have been hard at work building out packs to help you instantly find and follow the people you were connected with on Twitter.
It’ll take time to find everyone - but what I’ve seen so far is incredibly encouraging. I’ve even started a pack for ‘Newbie Spoonies’ which is for anyone who’s disabled, chronically ill or an ally and looking for mutuals. It’s a great way to connect with people who want to build a network for friendship and camaraderie - and we can build more as the user base increases. You can click on the images below to go directly to each pack.
If you’re looking to make the leap to bluesky and need help and support - you’re more than welcome to message me here and/or on the platform. I can be found here: https://bsky.app/profile/broadwaybabyto.bsky.social
Finally - if the new platform is intimidating (which is totally understandable)
has put together a fantastic resource that explains the various features and functionality. If there’s a feature missing that you WISH the platform had - be patient. There’s good odds it’s coming. People are hard at work building out new and improved functions - and the faster the platform expands the quicker change will come.
What Other Options Are There?
Obviously - Substack is another viable alternative. If you’re reading this and unaware of Substack’s ‘Notes’ functionality - it is similar to Twitter. You can post comments, reply, like and ‘restack.’ There’s no character limit which means if you enjoy long-form threads like I do - it’s a fabulous option.
To participate in Substack notes you need only download the app and set up an account. You don’t need to write a newsletter to be a part of the community - many people following and engaging with me don’t have publications of their own.
Notes tends to be quiet when you first start - and it may be frustrating and feel like you’re talking to yourself (I know that’s how I felt) but new users are arriving every day. Its algorithm learns what you like (and dislike) and will start to open up new options for you the more you contribute.
Last - but certainly not least as it’s near and dear to my heart - is Mastodon. Who doesn’t want a platform where posting is called ‘tooting’?
Jokes aside - I love Mastodon. It’s part of the FediVerse - which means it’s not run or controlled by a single person or site. It’s an interconnected network of servers run by different people - and it’s pretty awesome.
The community I’ve found there is smaller than Bluesky (or twitter) but they’re incredibly supportive, informed and engaged. They are eager to help people learn the ropes and there’s a ton of great Covid, public health and disability information.
Some people were frustrated by the sign up process - because how can you know what server to choose when you’re brand new to the app. I get that - and I’m offering a solution! I joined a Canadian based Covid Cautious server called Zeroes and it’s fantastic. The people behind the server will help you as much as you need - and you can change servers at any time.
It’s a great starting place and IF you find another server that fits you better - it’s easy to move and you won’t lose your followers. That said I think most people will love joining the community of care that Zeroes have created and probably won’t WANT to change. You can find me there at: https://zeroes.ca/@broadwaybabyto
Image Description: A drawing of a pink care bear in a white cloud car. Pink text reads: “Get in Loser, we’re going caring!”
Wherever We End Up - We Need to Stick Together
As much as possible - I’m hoping our community sticks together. Digital connection is critical when you’re chronically ill. Many of us have been abandoned by most people in our ‘real lives’ and rely on our online friendships for support, companionship and literal survival.
We don’t want to lose that. That’s one of the reasons I created The Disabled Ginger - I wanted to build a place that would be welcoming and inclusive and where people could find friends, learn about disability and feel a little less alone.
Many of us are feeling very lonely right now as we watch follower counts drop and people split off into various corners of the internet - so I want to remind everyone that they are not alone. There are many of us in the community who will remain on twitter and try and ensure no one gets left behind.
If you’re struggling - reach out. If you want to make a move but don’t know how to do it - drop a comment. Whatever your decision - you have my support and the support of the broader community. We are all trying our best to get through increasingly difficult times and everyone needs to make the decision that’s best for them.
For my part all I can do is promise not to judge or shame anyone for their choice - and to make myself available as much as my spoons will allow to help those in transition. Together we will keep establishing and building communities, keep resisting and keep protecting one another.
Are you still on Twitter/X? Have you moved to a different platform? Where do you find online community? Feel free to leave a comment - and if comfortable you’re welcome to include social media handles so community members can find you!
I cannot stress enough what you're signing onto by staying on this site after tomorrow.
This is just one piece of the new Terms of Service. You've agreed to let Musk SUE YOU FOR MONEY for violating the terms of service no one reads.
Liquidated Damages
Protecting our users' data and our system resources is important to us. You further agree that, to the extent permitted by applicable law, if you violate the Terms, or you induce or facilitate others to do so, in addition to all other legal remedies available to us, you will be jointly and severally liable to us for liquidated damages as follows for requesting, viewing, or accessing more than 1,000,000 posts (including reply posts, video posts, image posts, and any other posts) in any 24-hour period - $15,000 USD
per 1,000,000 posts. You agree that these amounts are (i) a reasonable estimate of our damages; (i) not a penalty; and (iii) not otherwise limiting of our ability to recover from you or others under any legal or equitable theory or claim, including but not limited to statutory damages and/or equitable relief. You further agree that repeated violations of these Terms will irreparably harm and entitle us to injunctive and/or other equitable relief, in addition to monetary damages.
I have a friend who raves about Mastodon, but I also hear it's hard to pick up. As someone who has never gotten along well with technology and generally avoids the social medias, can I just install it and have people help me navigate it? Is it basically like another Twitter but more difficult because it has more features?
Thanks for this. I have similar concerns about people having a hard time finding community so I also wrote an article. You covered some good stuff I missed.
https://colleensteckelmeiccinfo.substack.com/p/connecting-via-bluesky