So in case anyone is puzzled why the VeganOstomy Instagram and Facebook pages are no longer available, it’s because I’ve left both platforms (both owned by Facebook).
The short answer: The Facebook company is evil, and both platforms are too toxic for my time and attention.
The long answer:
When I joined Facebook way back in 2004, it was a totally different place. I was able to connect with family and old friends, and it was pretty cool.
Then it became a tool to help connect with IBD and ostomy advocates as I began to develop my own form of advocacy through Facebook. Things were great! So many people found me through Facebook, and when I started using Instagram, I had the same positive results.
But as the years went on, social media changed. We began to see ads every 15th post, then every 10ty, then 5th, then every third post. There were way more “Promoted Content” that littered our feeds and then some of the advocates I followed began taking on sponsors to promote their stuff – every post, in effect, was either an ad or a post hiding an ad.
Needless to say, this significantly lowered the quality of the content I was seeing and produced a lot of noise in my feed, so the platforms became less useful for me.
But in recent years I’ve seen both platforms use and abuse their user’s private data, even worse, they’re using that data against us to promote more ads and to sell that personal data to anyone who was willing to pay.
I didn’t want to support either platform personally, but having the VeganOstomy pages really kept me entrenched in the Facebook/Meta ecosystem.
As an example, you need a personal Facebook account to manage a “Page”, which means that Facebook will still be tracking and collecting as much data as possible from me personally, even if I’m just logging in to reply to a private message sent to VeganOstomy.
For context, I take privacy and privacy rights very seriously in my personal life, so I’m always using an adblocker, tracker blocker, and VPN when necessary. Even with those in place, my Facebook data export lists hundreds of advertisers who used my personal data to target me.
But that’s the point. Facebook and similar platforms monetize off of your private data and your preferences. You become the product, no matter how they want to spin it.
Several years ago, I when I wanted to create a safe space for people to connect and ask questions, I began to explore the possibility of starting a Facebook Group, since so many people were on the platform.
But in both my research and questionnaire to my followers, it became really clear that Facebook would not be a good place to share your private medical experiences, even in a “closed” group.
Our data is on those platforms is not protected, and Facebook Groups become a honey pot of data collection for Facebook to sell to someone else (or use it against you).
That’s when I decided to start the VeganOstomy Community Forum, which is not linked to any social media platforms and allows you to use completely anonymous login/account details to you can interact. Of course, unlike Facebook, you don’t need an account to view the posts on the forum.
So where does that leave VeganOstomy? Won’t it be hard for people to find my content?
Yes and no, but mostly no.
While Facebook has driven traffic to the site through shared posts, search engines and other websites direct far more visitors to the site.
The difference is that Facebook forces users to see the posts, while search engines allow people the option to visit the site or not.
Freedom of choice is far better than being forced to see things that may or may not be relevant to your life. Plus, I’m always accessible directly through email or the VeganOstomy forums.
What I’m planning for VeganOstomy.
I’ve already started making privacy-related improvements to the VeganOstomy site, and I’m also in the process of moving some of my services over to more private-first solutions to protect both my visitors and myself from vultures like Facebook.
In my personal life, I’ve already transitioned nearly all of my Google services over to non-google, privacy-respecting services (including, self-hosting). Yes, Google is no better than Facebook in many regards.
While I’ve already removed Google Analytics from the site, and I do plan to move VeganOstomy’s Gmail account over to a different service, it will be difficult to move away from YouTube at this time.
I simply don’t see any other alternatives for YouTube which could provide the same reach and benefits to my audience.
But that doesn’t mean I can’t protect my visitors from Google’s prying eyes :)
If you visit an article that has a YouTube video in it, you’ll see a thumbnail without any of Google’s tracking scripts or cookies loaded in. Once you click on the thumbnail, it will proceed to load the actual YouTube video (a disclosure is at the bottom of each video).
More is coming, and it’s all to benefit my visitors.
Leaving social media will also free up more time and mental energy to actually work on getting more content done. I’m looking forward to a bright future for VeganOstomy.
What you can do.
Have patience while this transition takes place.
I’m still just one guy, running all of VeganOstomy on top of a full-time job and busy family life. In the next few weeks, if you see something “broken” on the site, no need to worry, it’s being worked on :)
If you’ve donated to the site, thank you.
Your generosity has enabled me to invest in services that provide value to everyone who visits the site, without relying on ads and sponsored content.
Quit social media. Really.
There’s nothing wrong with the idea of social media, but the direction that current social media companies have taken society is so off track that it will take more people to leave those platforms in order to course correct.
Mental health has been in decline and anxiety disorders have been on the rise, especially for young people, and social media use is often strongly correlated.
These platforms are engineered to steal your attention and have been purposely used to manipulate voters, promote hate, target minorities, and to be addictive. You don’t have to be a part of that system.
If you’d like to learn more about the problem and what you can do about it, I encourage you to view these videos and tap into various resources which promote privacy as a fundamental human right. The data privacy community is huge and growing every day.
The Social Dilemma (on Netflix)
Cal Newport (his video interviews are great, but his books are also wonderful)
The Great Hack (on Netflix)
Electronic Frontier Foundation (nonprofit defending digital privacy; they offer practical tools and advice)
Any video or interview of Edward Snowden will be eye-opening from a data privacy perspective.