There are a lot of people in the disability community who use a popular article site called The Mighty as their platform to tell stories about their lives and to advocate for their needs and interests.
There are also a lot of people in the disability community who are very angry at this website. Some have disliked the website for a while, but it was when a (since removed) post entitled “Introducing: Meltdown Bingo” was published that many people became very upset.
Parenting Autistic Children With Love and Acceptance started a petition for the editors to issue a formal apology and to implement the changes that disability advocates are calling for. They’ve also started a boycott of The Mighty until The Mighty makes some serious changes (the Facebook page has a link to many, many articles voicing their discontent with The Mighty).
The main criticisms of The Mighty are as follows [I share an example/explanation written by an advocate for each, but these particular writers are far from the only individuals with these criticisms]:
- Lack of financial compensation and a lack of disabled employees. Dani Alexis Ryskamp has a piece on her blog Autistic Academic on the problematic and exploitative nature of this (hilariously titled “If You Like Then You Shoulda Put A Paycheck On It: My Real Problem With The Mighty (#CrippingTheMighty)” :
“Despite being a site dedicated to the topic of disability, The Mighty has yet to hire a single disabled editor. Despite being a site that actively solicits the writing of disabled authors, The Mighty does not pay these writers – or rather, it claims to pay with “exposure.”
As I said in another blog post earlier this week, a site that offers to pay you with “exposure” falls into one of two categories. Either it’s too small for the “exposure” to be worthwhile to you, or it’s big enough to make the “exposure” worthwhile – and therefore is big enough to pay you.
The Mighty, with a claimed 80 million visitors, falls into the second category. It’s got enough clout to make the “exposure” worthwhile. And with a seed round of $2.5 million, a claimed 300 non-profit partners, and paid advertising landing in front of the eyes of every one of those 80 million visitors, it has enough money to pay its writers, as well.”
- Using the stories and experiences of people (mostly children) with disabilities without their permission and, thus, making their lives public again their will. This is often referred to as “oversharing,” and, as Carly Findlay put it in her post “Parents blogging about their children with disabilities: it is a fine line between awareness raising and shaming.”:
“An adult with a disability may choose not to disclose their condition – the whole condition or certain intricacies of it. But sometimes children’s identities are made public before they’ve given consent. When a disabled child’s parent has already blogged about their disability or shared photos and stories on social media, their condition has already been disclosed. And so this impacts on their friendships, future employers, relationships and esteem…
…I understand parenting children with disabilities is hard and isolating, and that parents need an outlet. Parents are wonderful (and sometimes the only) advocates for their children. And so many others will relate to their stories – so that is positive. (I know firsthand just how cathartic and supportive blogging about disability can be.) But is airing such personal, complex details and feelings about a child’s disability online the right thing to do?
It is a fine line between awareness raising and shaming.” [emphasis mine]
- Parents,caretakers, and family members of those with disabilities having more of a voice on the website than disabled people themselves. Kim from Eccentricities and Introspections details why this is a problem in an open letter to the editor of The Mighty:
“Parenting is super hard. I think it’s the hardest job I’ll ever have and I would never deny that it is challenging. I’ve participated in many online and in person support groups for parents of disabled children and no matter how positive the environment is supposed to be, the same narratives apply and like I said, The Mighty is no exception.
I believe with all of my being that parents need and deserve support. But, they deserve the right type of support and I don’t think many parents even know what that looks like. Toxic support is rampant in the disability community and it feels so darn good many don’t even see the toxicity. It’s akin to an AA meeting being held in a bar where everyone is ordering drinks while talking about their addiction to alcohol and how they really want to get sober but… and the members of the AA group give hugs and tell each other that it’s okay it’s just too hard. I mean, sure, those people in that AA group feel supported and it feels good, but the outcome of that support is not a positive one. Same applies to the *woe as me* support groups for parents.
Parents of disabled children are often allowed to get away with saying and doing some of the most heinous things because society refuses to tell them they are wrong. The support community built around parenting disabled kids tells everyone that we should never judge a fellow parent because it’s just *so hard* This is dangerous. It really is important that someone stand up and tell them they are wrong. Someone has to stand up for the children, but many won’t. “
- Inspiration Porn, which Stella Young covers beautifully in her article “We’re not here for your inspiration”:
“Inspiration porn shames people with disabilities. It says that if we fail to be happy, to smile and to live lives that make those around us feel good, it’s because we’re not trying hard enough. Our attitude is just not positive enough. It’s our fault. Not to mention what it means for people whose disabilities are not visible, like people with chronic or mental illness, who often battle the assumption that it’s all about attitude. And we’re not allowed to be angry and upset, because then we’d be “bad” disabled people. We wouldn’t be doing our very best to “overcome” our disabilities.
I suppose it doesn’t matter what inspiration porn says to us as people with disabilities. It’s not actually about us. Disability is complex. You can’t sum it up in a cute picture with a heart-warming quote. So next time you’re tempted to share that picture of an adorable kid with a disability to make your facebook friends feel good, just take a second to consider why you’re really clicking that button.”
I’ve written one article for The Mighty a whiiile back in response to an article written by autism advocate Erin Clemens about advocates speaking “on behalf” of the entire autistic community; I also contributed an item to a list of what stimming feels like for autistic people.
I haven’t written anything for them since because A. there’s a word limit (if I recall correctly), and I don’t do too well with word limits, B. the articles on the sight tend to be focused on one’s own life experiences, and, until recently, I didn’t think that there was all that much in my personal life worthy writing about, at which point C. I started entertaining the notion of having my work monetized (at the time of writing this post, that hasn’t happened quite yet, but, knock on wood, it might one day), and C. I became aware of some of the criticisms above .
I’m guilty of sharing a lot of their stuff, I’ll admit. There are some articles and videos that articulate some of my own experiences more articulately and creatively than I do, and I wanted my loved ones to see this. There are some articles that cover topics that I had never thought about otherwise, like how some parking lots shovel snow and dirt onto disabled parking spots when cleaning their lots or the implications of living with a colostomy bag. A lot of good information has come out of the writers that contribute to that website, and I find the website a difficult habit to kick.
But I haven’t shared anything from them in a while (since August 6th, I think, if Facebook’s searching method is as complete and as chronological as i take it to be). And it may be a while still before I share anything from them again.
Here’s my response to some of the criticisms laid forth by those who boycott The Mighty.
1. Regarding the lack of payment.
It wasn’t until I read Dani Alexis’s post that I thought anything unusual about a website not paying its contributors. A lot of websites don’t pay their contributors. I wrote for The Odyssey Online for months, and I never got a single cent from them.
When I contributed to both The Odyssey and The Mighty, I knew well that I wasn’t going to receive financial compensation for them, and I was (and am) okay with that. I was writing to get experience and exposure: the goal here was to build up my portfolio, not my paycheck. I got satisfaction enough from the creative process and from seeing something that I created being polished and displayed.
Not that I would have turned down anything that either site would have paid me for my articles. 😉
But Dani Alexis makes some good points. For one, they could (and should!) hire more disabled people on their payroll, not only as editors but as web designers and social media managers and marketers and public relations and all of the other roles that goes into running and maintaining a website. As Dani Alexis and many other advocates have noted, there are many unemployed disabled people and not nearly as many employed disabled people, and while there are numerous factors that play into this, a lot of this has to do with employers not hiring employees with disabilities.
There are entities out there, such as Autonomous Press, that do pay disabled people for their writing, and The Mighty makes more revenue than they do. It wouldn’t be impossible for The Mighty to do so, which makes one question why they don’t.
Would this mean that The Mighty would have to publish fewer articles? Maybe, depending on how much it paid for each article. I’m no economist: I don’t know how much money it costs to run and maintain a website as large as The Mighty or how much The Mighty’s charity partners actually pay them and will continue to pay them.
Would this trade-off between fewer writers getting read and those who do get read getting compensated for it worth it?
Who am I to say? Worth it to who?
2. Hell yes to the point about (over)sharing intimate details of a child’s life without their permission.
Children (in both the sense of being a minor and the sense of being one’s offspring) are people too, and people deserve to be treated with dignity.
One way to do this is to avoid using the persons’s real name and image unless the person explicitly approves of such. A lot of blogs use nicknames for their children (Autism With A Side of Fries uses “Kiddo,” and The Perfect Piece uses “Piece”).
There is some debate as to what a parent/caretaker should be allowed to share about their child, such as their toileting needs and meltdowns. Some argue that these topics are too confidential/potentially embarrassing to share on public platforms and should be left to forums and private groups (ideally without revealing the identity of the child even then). Some argue that making such moments known widely help other parents and caretakers to feel less alone and to raise awareness about topics that parents and caretakers need help with but that aren’t often discussed.
I’m generally of the persuasion that the more awareness that we can bring to a wider scope of topics, the better.
But I would also encourage those who write about such things in public posts to be as respectful as possible. Unless you get explicit, informed permission, keep the identity of your child anonymous. Don’t assign a moral weight to these incidents: disabled children are not “bad” children for displaying symptoms of their disability. To this end, try to avoid the use of such words as “tragedy” and “burden”; even if you mean it in the tone of “I am sad that my child has to go through this,” it can often come across as “I am sad that my child exists as they do,” which can often come across as “I am sad that my child exists,” and that can thus lead a child to feel guilty about their own existence.
And, finally, to use a very cliche piece of writing advice (one that I, myself, sometimes struggle to follow):
“When in doubt, leave it out.”
3. Regarding parent narratives in general:
The question then becomes “What place do the narratives of parents and loved ones of those with disabilities have in the discussion about disabilities?”
I do agree that the narratives of the people with these conditions themselves should hold the most weight. Nothing about us, without us, and we should have more of a say on what affects us and how the world sees us than should anyone else.
But I do think that we should have a space for the parents and the caretakers to talk about their experiences (again referring back to point 2, this discussion should never sacrifice the child’s privacy or autonomy).
Now, what this space should look like is a matter of debate.
Should it inhabit the same space as that of people with disabilities themselves? Should it be in a completely different space from that of disabled people?
There are some that caution that parent narratives–especially those who take a negative tone–run the risk of contributing to the fear and malice that causes some parents to harm or end the lives of their disabled children.
Some want such narratives not to be shared at all for this reasons.
And I do believe that Disabled Filicide is a serious matter that should be prevented at all cost.
But, I also believe that letting parents air their grievances may actually save the lives of disabled children.
If someone is so mentally…strained, bent, tortured, however you see it…that they are considering harming their child, I’d rather them make public that they are currently feeling discontent towards their child than for them to keep those feelings private.
We can fight the demons we know; it’s a lot harder to fight the ones that we don’t.
Parents who have also dealt with being strained can reach out and say, “Hey, it really looks like you could use some help here. Let’s talk about this and see what we can do.” If they so choose, some disabled people could say, “Hey, I was/am like your child. Let me show you some other possibilities.” Maybe we can even have mental health professionals monitor these zones and reach out to parents who appear to be in strong duress.
Do parents talking about how difficult it is to raise a disabled child hurt the feelings of those with these disabilities? Of course it does! I still have to hold back tears when I think of what certain family members have said about how difficult it is to deal with me at times, and they haven’t said anything nearly as strong as have some of the parents in these articles. They’ve made statements that made me feel as though they’d be better off if I were never born, but they’ve never actually said anything to the effect of wishing that I was never born, and they certainly haven’t said anything about me on a public internet medium.
There are times when Suzanne Wright’s 2013 letter to congress comes up and I feel like I’ve been suckerpunched in the gut as I read yet again about how people like me supposedly suck the life and joy out of our families.
I know that these words and these sentiments hurt. I’m still recovering from the wounds.
And I do think that we should try to reduce these wounds whenever possible. I do think that those who head large disability organizations should take care to talk about disability that, at the very least, does not imply that a disabled life is not worth living or that people with disabilities are a burden on those around them, and I think that the media should follow suit. I think that anyone who writes about disability should be as mindful and considerate as possible, just as they should be when dealing with anything that involves human beings.
But we can’t prevent emotional hurt entirely, and we can’t except parents to only talk about the positives of disability and of raising a child with a disability for the sake of preventing this hurt.
All we can do is build a support system to cope with this hurt.
That’s why pro-disability organizations such as The Autistic Self Advocacy Network and Self Advocates Becoming Empowered (SABE) and all of the disability/condition-specific organizations are so important. That’s why forums and Facebook groups and communities of disabled people are so important. That’s why social media movements like Autism Positivity Day and #WalkInRed and are so important.
That’s why the voices of those with disabilities should be prioritized and amplified.
4. As for “Inspiration Porn:”
There’s a line between sharing a positive story that so happens to include someone with a disability and sharing a story that makes it seem like a disabled person doing anything “remarkable” is something “amazing” and “awe-inspiring” [and, thus, rare and implying that most disabled people aren’t capable of such things].
In general, prom/Homecoming stories, as well as any story that makes the friendship between a person with and a person without a disability seem “remarkable” or “heroic,” tend to be on the patronizing side of things. It’s not exceptional that a person with a disability is able to have a meaningful enough relationship with someone so that they would go to a dance with this person or sit with this person at lunch. The non-disabled person isn’t any more of a good person for going to Homecoming or going bowling with a disabled person than they would be if they did these same things with a person who is not disabled.
Now, if either party person is a celebrity or corporate figure, then maybe you have something to talk about.
In general, it’s not remarkable for someone with a disability, including developmental and intellectual disabilities, to have a job, and it’s not exceptional for said person to be pretty decent at their job.
Of course, the unemployment rate for disabled people is very high, and because of this, it’s worthwhile to support disabled people in finding and keeping a job, and having a job, whether you’re disabled or not, is something to be proud of. But to make it seem like a disabled person having a job is some completely outstanding achievement only furthers the conception that people with disabilities are generally incapable of work.
Now, if that job is, say, an Olympic athlete or a musician or something that people are naturally inclined to pay much attention to regardless of disability or lack thereof, then, again, you may have something to talk about.
In general, it’s not exceptional for someone with a disability to participate in sports or to be in the out in the community or to use public transportation or to do anything that it would not be exceptional for someone without a disability to do.
And of course, if a disabled person has something to say about their experiences, then that’s a different story (pun not originally intended, but I’ll roll with it).
Here’s my bottom line for The Mighty:
Hire disabled employees, and consider paying your writers.
Cut the inspiration porn out, and make sure that parents are not using their child’s name and image unless there is some way that you can make sure that the child has given consent (which is tricky over a website like The Mighty…so, maybe play on the safe side and avoid this altogether?).
Make respect for the disabled your number one priority.
Regarding the shared space between those with disabilities and their loved ones, The Mighty has one of two options:
Keep the parent/family/loved ones narratives separate from the narratives of the actually disabled. Have them under a different header, mark them a different way: make it to where people who only want to see one or the other can do so easily.
Pick one of these two factions and focus on them. Either decide to be a platform for the family and the “others” and let people with disabilities find a different space, or decide to be a platform for the disabled and let the “others” find a different space.
I prefer the first option to the second, as I have read articles that I like from both parents/caretakers/loved ones and from disabled people themselves that have really opened my eyes and given me insight. But I understand the appeal of the latter.
The Mighty has so much potential. But it has some changes to make, and until it makes those changes, it is going to gain a lot of discontent and lose a lot of followers.