An open letter to The Mighty: being mighty outspoken means getting mightily shut out.

If you read and share content from the disability website The Mighty, what you're about to read here might make you rethink that.

The Mighty editors have removed many of the disability self advocates (and non disabled advocates) from the very community they're trying to serve.

You might be aware of the issues myself and many other disability advocates have with The Mighty. I wrote about the problems with the site and my suggestions in late December.

Since then, the editors have continued to ask for our feedback and said they'll take it on board. A number of us have provided advice on accessibility, payment for writers, language and content to both the site's editors and writers. The atmosphere in their dedicated Facebook writers group got very nasty, and on Friday afternoon (which was Thursday night/midnight US time), many of us (People with disabilities and those without) were removed from the group - with no warning and a very poor explanation following our removal. I was removed a few minutes after I called out the bullying of another writer. His actual words: "I thought you were able-bodied and just acting like you were disabled."

Their reason for our removal: "to return Mighty Voices to what it was designed to be. For this reason, we are removing anyone who hasn't submitted a story for consideration on The Mighty in the last four months." Interesting timing, hey?! They handled that well.

I've considered not blogging about this, but I maintain that it's really important we discuss how people with disability are included and represented in the media - to show who's doing it right and also who gets it wrong. (To help get it right. Alice Wong, Elizabeth Jackson and R Larkin Taylor-Parker have developed an excellent pledge for media outlets and writers to eliminate inspiration porn.) As Cara Leibowitz said today, the fallout from The Mighty and some of its writers makes me "sorry that actual disabled people had the nerve to critique a disability-related site." It's been a mighty mess.

Here is my feedback to the editors - I sent them this email.

Hello Vicki and team,

Thank you for your email advising me of removal from The Mighty Voices group. I am both amused and upset.

Your reasoning for our removal seems suspicious. Calculated even. It seems like you’ve removed the ‘problem children’, shaping the Mighty into a twee, parent-centred community, sourcing unpaid, oversharing, demeaning and feel-good stories about disability.

Four months since we’ve contributed is such an arbitrary figure. And is discriminatory to those who take a long time to write because of their disability.

You removed many people at midnight your time. Midnight. Who makes a decision to do that in the middle of the night? I commend you on your around-the-clock dedication to The Mighty.

And almost immediately after I alerted Mike, Megan and Vicki to some overt, incessant bullying by Olympic Dad, as I like to call him, I was removed from the group.

The atmosphere in the Mighty Voices Facebook group has been unsafe for some time now. I’ve been on the receiving end of so many nasty words, and so have many others. There has been poor moderation from your end. Disability (and disability parenting) hierarchy is rife. Contrary to the way Lauren Jordan Swick portrayed the behaviour of disabled advocates in her Washington Post article. I’ve observed name calling, heated arguments, stubbornness and denial of ableism and inspiration porn that's mostly come from parent writers.

If people are more offended by the term inspiration porn than the content of inspiration porn, there's a problem. Inspiration porn objectifies people with disabilities, implying we only exist to inspire and to make others feel good. If they deny ableism exists, and simply "agree to disagree", I envy their privilege.

Many parent writers in the Facebook group cannot see the value of engaging with and truly listening to the perspective of disabled adults. (But fortunately many others can.) They aren’t educating themselves about disability rights, nor dignified ways to tell their child’s story. We aren't saying don't write or share, we are just asking parent writers to consider what and how they write or share. If they wouldn't like something being written about them online, don't write it about their child. Blogging about illness and disability can be so beneficial when it's done mindfully and respectfully. The parent and carer voice is very valuable and necessary, but not at the expense of a child's privacy and dignity. We (the disability community) aren't the enemy. We aren't spouting hate or silencing them. We are speaking up because we are passionate about human rights and equality - isn't that a trait they'd like to see in their child too?

I am really tired of people with disabilities being labelled as victims, bullies and rude when we speak up about our rights. We speak up because we are discriminated against, spoken over when and our voices are so often not the centre of the story (told by others). As many of us have discussed, people with disabilities are portrayed as heroes, burden, tragedies and difficult. This portrayal is also why we speak up – this is one of the reasons Cripping the Mighty was started.

Disability advocates within the group have been patient, answered questions when asked, and provided many resources around ableism, language and inspiration porn. While we might not have contributed to the Mighty site (and you know my reasons for that – I wrote a 3000 word blog) for four months, we’ve certainly contributed a lot of our knowledge, firsthand experience and resources to other members. Many have expressed their gratitude, and continued to ask for advice. We have shown so much grace while others have thrown tantrums and used poo emojis in their arguments.

Many people who have been removed from the group are upset. Some feel you’ve taken away their voice. Some wonder where they will engage with others facing similar challenges. Hell, you met with Cara on Thursday, and removed her on the same day. She offered some great editorial advice to you and then shared it with the writers group. Before she could blink, her post was removed, and then she was removed. This looks unbelievably bad.

One of the best things to come out of this whole sorry mess is the friendships formed – between parents and adults with disabilities. We’ve got each other’s backs. We’ve got to know each other’s stories and really learn and connect. I know Facebook group members are missing a diversity of voices.

Some of my new friends have told me that you’ve introduced new moderation rules for the group – something I think should have been there from the start. But I worry that these moderation rules will mean censorship. Disabled advocates (and moderate parents) will be silenced. The parents who decry "I will write what I want, you can’t stop me" will overrule. And so, oversharing, ableism and heightened stigma around disability will continue.

I don’t think you’re willing to listen. You’ve called for us to reach out and when we have, you’ve shut us out. You continue to publish inspiration porn. You haven’t made the Facebook group safe after many requests from members. Your brief generic responses to our lengthy emails and well researched blogs have been disappointing. And you've removed many passionate voices. We are Mighty Burnt.

I was optimistic that The Mighty would take on a new direction in 2016. Sadly, I don’t think that will happen. I see more of a focus on click-bait, heated arguments and disability hierarchy than progressing disability centred media.

It's sad that you've let go of some amazing disability advocates who enriched The Mighty community. Imagine how this would look on a Mighty headline: "Disability website silences the voices of people with disability".

Carly