My thoughts about disability website The Mighty have been brewing for some time now. I'm overwhelmed with words as I write this piece. But it's time I addressed this. It's a long post, but I've done my best to clarify my feelings and do some research to back up my claims.
This week, The Mighty published a post which was offensive to many - it was about "meltdown bingo" - making fun of people with autism. A petition was started. The editors removed the post and wrote an apology.
That post was the last straw. The Mighty has been problematic to many for a while - with writers expressing their feelings about it this year. Meriah has written her thoughts here ("The Mighty is disability on click bait", she says) and there's also a great post on 21+21+21. Parts of disability community rallied and broadcast our thoughts about the issues with The Mighty this week. You can see them via the Twitter hashtag #CrippingTheMighty, and a summary of blog posts in a link at the end of this post.
Cripping the Mighty is a movement to take back our voice, to show The Mighty editors and readers many diverse, informed, educated and articulate disabled writers, and to voice our concerns about the website. The Mighty then asked for a conversation. Many writers, including Radical Neurosiverse Speaking thought this consultation with the disability community was too little, too late.
I describe The Mighty as a site about disability, which often has a pity/inspiration-porn/parent focused narrative. Cara describes it as "not-news-news". Yes! Alot of the stories are non news about disability. To my knowledge there are no editors with a disability at The Mighty - but founder and CEO Mike Porath has written about his experience as a parent of disabled children here. Many esteemed writers with disabilities and parents contribute to the site. I'm friends with a few of them.
The Mighty had so much promise but many of us feel parents' stories outshine the stories of people with disabilities. As Leah Kelley writes, the voices of parents and professionals often has more reach and volume than those of patients and people with disabilities. It is more so a website about disability, rather than by people with disability. And so often when disabled people write about their experiences, they're shut down by commenters, or diluted by stories about us. In a call to change The Mighty, Savannah Nicole Logsdon-Breakstone wrote "One specific ask is to increase the percentage of disabled writers so that parents are not the primary voice heard on the site."
I've contributed to The Mighty several times. I've not written anything new for them - just republished blog posts, and it's been unpaid, so it's been all about the (small) exposure. I've also said no to them several times, when they've asked me if I would like my posts republished. I've said no because of lack of payment, my feelings about the content as a whole, and also the knowledge that one of the posts they wanted to publish would no doubt be torn to shreds
Why would I write for a site that I don't fully. agree with in parts? (And am I biting the hand that feeds me? No.) Because I wanted to help change the narrative. I wanted to add to disabled voice, which I believe The Mighty has but lacks. I believe that sharing stories helps others feel less alone, and helps them share theirs. And I admit, it's nice to put another website on my portfolio.
My issues with The Mighty can be broken down into themes: the portrayal (and inclusion) of people with disability, oversharing, lack of payment, contributors community, support from editors amd commenters.
The portrayal (and inclusion) of disability
When I first saw a dedicated platform for stories about disability, I was excited. Since the cessation of Ramp Up, a united platform has been missing. Disability is underrepresented in media.mwe need more voices.
I do enjoy some stories on The Mighty, like this one - addressing disability pride and being called an inspiration for just doing ordinary things. This is a good post too - the writer draws attention to the problem of the supercrip.
But overall, The Mighty features inspiration porn, and many stories are of pity and tragedy from a parent's perspective. There is also a tendency to make heroes of people without disabilities who interact with disabled people. The stories are well intentioned, but could be so much better.
The way we are represented impacts on us. It impacts on our job prospects, relationships, media portrayal, financial support and our self esteem. It impacts on everyone with a disability, and everyone without. Here are some examples of problematic posts:
To the Waitress Who Stepped Out Of Her Comfort Zone for My Son (Here, the mother describes a waitress interacting with her son for a minute while she went to the bathroom as "a once in a lifetime experience". How little faith does she have in people?! Does she think that no one will interact 'normally' with her son, like ever?)
Why I'm jealous of kids with cancer (The illness hierarchy is callous)
To the Family at Disney Who Saw My Son in Line to Meet Buzz and Woody (Well intentioned but making an able-bod out to be a hero.)
On how denial is (was) a special needs parent BFF (Why do they skirt around the word disability?)
When a man with special needs surprised my wife in Walmart (Ugh. Disabled man hugs woman in Walmart. So her husband wrote an article about it for The Mighty. Not news.)
19 hilarious food requests autism parents have on Thanksgiving. (Dietary requirements and preferences are mocked.)
Disability is often portrayed as a burden, with non disabled people taking time out of their busy day to interact with disabled people, and parents sharing stories of the difficulties of parenting children with disabilities and illnesses. (See Girraffe Party's excellent post about this issue.)
It's difficult as a disabled adult to read the raw stuff. To read about the real, valid feelings of grief and cures, and also the oversharing photos, is really tough to see. Did my parents feel this way too?I fully endorse with offline spaces for in depth discussion about medical details.
Lei Wiley has written about the problem with the portrayal of disability by parents on The Mighty - she's said it better than I could.
"Many people confuse parent support with disability advocacy. Those are two separate things. This is why sites like The Mighty are so problematic. You can't complain about parenting a disabled child in the same space that you claim to want to uplift and inspire people about disability. The narrative of tragedy surrounding the experience of parenting disabled children has real life consequences for disabled people. If you want to serve our communities, you must not tell our stories without us and with so little respect to us. If you want to help disabled people, learn about ableism, learn about injustice, learn about ways to make the world better, fairer and more inclusive for us."
And S.E Smith also wrote about the issue of The Mighty being a place for parents, specifically how their identities are shaped by their child's diagnosis in this excellent blog post.
Additionally, The Mighty doesn't use alt-text - image descriptions to assist people with various disabilities make sense of pictures. Another way they're excluding people with disabilities.
Sometimes stories on The Mighty are not the writers' to tell. Like this one: To the Man Who Almost Jumped in Front of the Subway. This is tragedy at the expense of clicks.
However, I also think everyone is entitled to their stories, and a parent's experience is valid and needs to be vocalised too. But never at the expense of dignity or privacy,
I've written a lot about my views on parents oversharing about their children's conditions, but to summarise: for parents blogging/ sharing information/seeking advice about their kids online - my view is, do it but show some caution. If you wouldn't like that written about you online, then don't write about your kids in that way. It's too easy to ask a question in a Facebook group or to put up a photo of a child's rash filled bottom in desperation. Don't share pictures of them in vulnerable situations (naked, in pain, private ones). Keep the privacy and dignity. Blogging creates support and connectedness and is valuable for everyone.
I never want to silence anyone's voices. But if you're "being the voice" of someone else, consider what and how much you share.
Lack of payment
The Mighty contributors do not get paid. People with disabilities have a lower income than those without. Unemployment is high, and opportunities can be low due to low expectations of people with disabilities. Parents who care for their disabled or chronically ill children may not be able to work. Most stories are about lived experience. So contributors should be paid fairly for their contribution.
I was asked to cross post my Mighty articles on Yahoo. I declined, because of the lack of payment for my lived disability experience, writing achievements and qualifications. Yahoo is a huge company and I am not. Its projected earnings in 2015 was $950 million.
(Here is an article about the financial backing for The Mighty - they recently received a grant of $2.5 million)
The Mighty and Yahoo needs to value its contributors more by paying us. Even hire a disabled editor.
The Mighty contributors community
Mighty Writers have access to a closed Mighty Facebook group. Generally the group has been quite supportive and well behaved. It hasn't been pretty over the past few days though, with bickering between parents and adults with disabilities wanting to have their voices heard.
Many were angry about Cripping the Mighty, suggesting it's just a small handful of people with too much time on their hands shouting and spouting hate speech. Some have been extremely aggressive, but others have been lovely, open to different views, assertive about our education and experience, and very supportive.
I feel like some parents and disabled adults are missing our point - some don't think ableism exists, others don't like the term inspiration porn and a few think The Mighty should be segregated between adults with disabilities and caregivers. One writer has told me (outside of the group) she thinks autism and Down syndrome gets too much coverage and rare conditions should get more. There is a definite sense of hierarchy in the writers community.
Many are saying they are the only voice for their child and have a right to share their child's story, not understanding the impacts of oversharing and loss of privacy and dignity. (I was attacked by a Mighty contributor on my personal Facebook page for raising this specific issue. She said I'm not a parent, so can't comment, blah blah. Friends had my back. Thankful.)
I shared a couple of my blog posts and also my point of view on parents blogging about disabilities with the group. They've been welcomed. I got a few lovely comments which have been nice. I've since connected with some lovely people. They've asked me to review their articles - which have been fantastic. Considerate, compassionate and concerned about the portrayal of their children.
A friend with a disability left the group, feeling chased out by angry parents. Another said her anxiety was heightened by the arguments there, and she needed time out. And someone else (a parent, very considerate of how she portrays her child and his autism online) told me she was being called mentally ill in a derogatory way by another parent and has been upset. She told me "I am a stranger [to her] and she has no knowledge of me nor my mental health..this was astonishing and troubling."
You can read more of my experience as a contributor in the group on Disability Voices (log into Facebook to read it).
Today I was warned by The Mighty editor for sharing quotes directed at me, and my own quotes outside of the Facebook group. I will not have my experiences silenced.
Support from the editors
While the editors have tried to foster a community, I am not sure of the level of guidance (if any) they provide their writers. I don't mean editorial guidance, but the emotional support that is so important in handling the feedback that comes with writing online. Years of blogging, and having close support networks has made me fairly resilient. And I hope The Mighty writers have got the same.
In the case of The Mighty's content, it's not the writers we should direct all of our anger at. The writer of the meltdown bingo point might not have made the wisest decision publishing it on such a large reaching website, but they're her thoughts. We should expect more from the editors. I really think vulnerable people (perhaps inexperienced, unprepared writers who have a lot going on with their/their child's illness or disability) who want their stories to be read submit to The Mighty, unaware of the reach and reactions to their articles. Being published (and subsequent fame) is a great achievement and can be addictive. The editors want to curate a certain narrative, and so use clickbait headings and unconsidered content on their site.
The editors might well be throwing inexperienced writers under a bus - intentionally or not. The writer of the bingo post was very upset this week. I wonder if the editors gave her a debriefing or prepared her for a backlash?
From my experience in The Mighty Facebook group these past few days, I'd say the editors haven't given contributors much support. They admitted to it too, in light of the response to meltdown bingo and Cripping the Mighty. They've let attacks happen. So I doubt they prepare contributors for a backlash. That's why I didn't want them to republish my post about parents oversharing. I didn't want to be ripped to shreds for free.
They might be doing their best, but with their resumes (their About Us section says the editors have a background of "The New York Times, ABC News, NBC News, MSNBC, MTV, AOL, The Huffington Post") I'm not sure how equipped they are with guiding more vulnerable writers who focus on disability and chronic illness.
Many commenters on The Mighty posts are either inspired or angry. I believe they too are problematic in relation to the portrayal of disability - mostly due to their low expectations and demands for the disabled writers to be teachable moments.
When an article about a disability centred sex party was published in August, readers were outraged. Readers dismissed the sex lives of disabled people - completely grossed out.
The comments were terrible - they show what I've been thinking for a while - readers lap up inspiration porn and cannot deal with learning about the real lives of people with disabilities. Disabled people have sex too! An example:
"So sad! I'm unfollowing the Mighty now. This is obviously not protecting and advocating for people with disabilities. I've often times been so thrilled to share what you guys post, but am so sad and grossed out. There should be people that love these individuals who teach them about sex, not having a perverted party. I'm so sickened by this. We're supposed to encourage, lift up, help them succeed, and most of all watch out for them. These people are preying on them. If so, I hope justice is served and light is shone on the dark places. Jason, Sandra, please read and share to unlike them. People with disabilities naturally feel hurt and rejected and want to be a part of something fun! If course they'll come to your gross party! I could have a much better party for them."
Karin, who wrote a great piece about not wanting to be called inspirational, was cut down by commenters. "People get angry when disabled people don't want to constantly educate on disability, but don't listen to us when we do #CrippingTheMighty", she tweeted. So true.
It is great this platform dedicated to disability exists, but I think it could be much better. I've got some suggestions for The Mighty, it's contributors and readers, which I hope will be considered. I'm hopeful of a change - I think the editors are listening and some of the parent contributors are really valuing what disabled writers have to say.
To the Mighty editors:
I know you will be reading this. Listen to us.
Pay writers. Support writers in the face of critical comments - arm us with resilience.
Implement a peer review program - as suggested by a contributor. Get an adult with a disability to review a post from a parent when unsure of how it will, be received.
Consider how disability is portrayed, and make disability the centre story (stop praising a person without a disability for being heroic for engaging with a disabled person).
Share inspiring stories but make sure the subjects are actually doing inspiring things, not every day things like getting out of bed.
Consider the impact a story will have on the wider disability community.
Remember the "nothing about us without us" mantra and follow that along with your motto: "We face disability, disease and mental illness together."
To The Mighty contributors:
We aren't the enemy. We aren't spouting hate or silencing you.
I am listening to you, seeing your struggles and admire the great job you're doing.
I understand how uplifting stories inspire you and often give you hope for your children. But please consume the stories about ableism, discrimination and why we don't want to be a teaching moment, too. Not all stories about disability are positive and uplifting, because life with a disability isn't always great.
I ask that you consider the level of detail you share about your child's condition by thinking how you'd like to be written about on the internet. Consider the impact your stories will have on the wider disability community, on your child even. Be mindful of public grief.
Educate yourself on disability rights, acknowledge ableism. Don't dismiss our feelings, take our guidance.
Acknowledge disability pride and instil it in your children.
Your children will be adults with disabilities one day. We were children with disabilities and chronic illnesses once too.
Never dismiss the disability community as whiny, overreactive or having too much time on our hands for speaking up.
And to The Mighty readers (80 million of you!):
Accept that people with disability lead full lives (even sexual lives) and really put thought into the impacts of your outraged comments.
Learn about disability politics.
Think about why you're inspired by disability, and then raise your expectations of disability.
The disability community is strong, intelligent, articulate, educated and proud. We aren't unknowns who will be blown over. We want to be heard. We will be heard.
We can work together.
What are your thoughts about The Mighty?