Saturday, May 9, 2015

Why I'm not in love with The Mighty

I have been getting an ad pushed into my Facebook feed a lot lately. That ad has been telling me that I "don't have to face a diagnosis alone." That ad is for The Mighty, a new-ish, fast-growing, and highly professionally built website.

Now, you might wonder, as I did, what my diagnosis would be. The closest I've come to a doctor in the past three years is trying to convince the US government that they should let me stay by getting a few vaccine boosters. I swear. So, as you might have guessed, The Mighty is not actually referring to my diagnosis (seeing as I have none), they're referring to my kid's diagnosis of Trisomy 21, Down syndrome.

Ah, of course this is about my kid, a minor, not me, a consenting adult.

This is about my family - my husband and I - and how we must struggle because the person who started The Mighty did:

"Lying in bed that night we were shaken and lost. This was not the life or family we had planned. I remember feeling small and hollow, a powerless husband and father. Whether it was a futile attempt to comfort my wife or a way for me to make sense of it all, I told her that we were going to do something good with this. How, she asked. I had no idea. We were in tears."

It is clear that there are no evil intentions behind The Mighty, just an attempt to make sense of a very personal situation, of one person's circumstance. However, should that mean that a powerhouse should be beyond criticism, because the intentions are benign and in accordance with one person's understanding of "doing something good" with a situation they didn't want to find themselves in? I don't think so. Of course not.

What does The Mighty aspire to? They write that they "...joined forces to build The Mighty because we all believed that a media company could be more than a business. At its best, it could actually help people."

Noble, you might think. Seems like something that could be good, right? But what does "helping people" entail in the world of disability? Who do they want to "help" and how? Why are they telling me that they don't think I should "face a diagnosis alone?"

Who is The Mighty for? When do we cross the line to inspiration porn aimed at the non-disabled, non-marginalized audience? Is it okay, as a non-disabled person, to want to feature

"Stories that inspire people – that can change the path of someone’s day, as my wife says – are a great start, but we are going after much more. Ultimately we want to improve the lives of people facing disease, disorder and disability."

Where are disability pride, disability culture, and creation of new value in "facing disease, disorder and disability?" Where is empowerment in "improve?"

They're not there.

As far as changing the path of someone's day, that happens to me most every time I come across an article, especially about Down syndrome, being featured on The Mighty. I come away from the encounter a little more defeated and angered, and feeling like I continue to bang my head against an ableist wall of inspiration. But that's just me.

Come on, the site's harmless and at least it's not disparaging and filled with hate (unlike you), you might be thinking, but hopefully aren't.

Is it though? Is it harmless to keep the grief narrative alive and well and more powerful than ever? Is it harmless to center the parents, the family, as opposed to the disabled person themselves? Is it really harmless to tell a new parent trying to suss out whether they're truly grieving a diagnosis or simply concerned about how their kid will fare in the world that is not designed for someone not considered typically developing, that it's okay to cry and grieve the "child they lost" and to let no one tell them they shouldn't? Not harmless in my book. Seems rather damaging for a kid who is everything but "lost."

Is this a site for suddenly disabled adults looking for community and "facing a diagnosis?" Doesn't seem like it. The majority of the articles featured seem to be written by parents of differently disabled children. To The Mighty's credit, however, I feel I must mention that there are articles written by disabled adults. They do exist on the site, they do. They are not the majority, and I'm not often sure what their purpose is, but they're there. So who is the site for then? By the looks of it, it is targeted to the non-disabled parents of newly born disabled or newly diagnosed children.

So. This is not a site for or by disabled people. This is a site about disabled people. About someone other than themselves coming to terms with their diagnosis, or sometimes seems like, their existence.

The Mighty could be so good, so empowering. There are inklings of this. I hope they refocus and redefine. I hope they become less satisfied with themselves and their general crowd appeal of feel-good and glossy, and truly help create something new.

With, not about.

I don't ask for much, but I do ask this: Do not pull the rug from under my kid's (or her peeps') feet. Just don't. There is no grace, love, or acceptance in something that ultimately hurts her.

As long as we keep centering the parents, the families, regardless of how good our intentions are, we are not creating strong advocates with their own strong voices, and their allies. The disabled voices remain erased, no longer buried in institutions but nonetheless largely drowned out by those who mean well.

We can do better. I know we can.

[A photo of the back of a blond child's head with slightly blurred metal chains in front of the child] 

Free our people. 

15 comments:

  1. YES! This is what I have been thinking about The Mighty for a while now. They have some good articles by adults....but you have to wade through a lot of crap to get to those. But yes, times a million to this post.

    ReplyDelete
  2. Thank you for putting in writing what so many of us have been thinking. Well said

    ReplyDelete
  3. Right on! I cringe whenever I see The Mighty stories in my FB feed.

    ReplyDelete
  4. 'Is it though? Is it harmless to keep the grief narrative alive and well and more powerful than ever? Is it harmless to center the parents, the family, as opposed to the disabled person themselves? Is it really harmless to tell a new parent trying to suss out whether they're truly grieving a diagnosis or simply concerned about how their kid will fare in the world that is not designed for someone not considered typically developing, that it's okay to cry and grieve the "child they lost" and to let no one tell them they shouldn't? Not harmless in my book. Seems rather damaging for a kid who is everything but "lost."'

    THIS. ^^ Exactly this.

    I don't read The Mighty all that often, but I've just recently felt compelled to push back against that grief narrative ("it's ok to feel grief - i.e. 'normal' people all do - over the child you thought you'd have") in other fora, as the mom to a gorgeous girl with Down syndrome who I have never grieved, only celebrated. She is a wonderful, beautiful, joyful human being; what is there to grieve? Not a death. Not a loss. Not a disease.

    I'm so glad you wrote this! Thanks for making me feel not so isolated in my views. I actually stumbled across your blog a few months back and was bummed to see it looked dormant, so it's nice to see new material :)

    ReplyDelete
  5. Thank you for writing this. My stuff has been republished on The Mighty - and it's been represented well (apart from the headlines which have been a bit inspo porny, and they changed my Australian English to US English). But the comments are either "she's so inspirational" or "bless her" or "the only disability in life is a bad attitude". I think the site is aimed at non disabled people, and tugs at their heartstrings.

    Another issue I have is the Mighty does not pay -which is often exploiting the lived experience of people with disabilities. Considering the reach (which gives my blog great hits) it should pay its contributors.

    ReplyDelete
  6. I think the mighty is a fantastic website that helps others feel like they are not alone and helps the rest of the world view people with special needs in a normal light. How is the world suppose to be inclusive and accepting in an appropriate way if they don't even know anything about people with special needs/ mental illness.
    I published an article about my brother with down syndrome on that website and got emails from people saying how they never knew about having a sibling with special needs and how enlightening my article was.
    To the people who publish articles on the mighty/ read articles on the mighty- good for you for joining a community of open minded people who admit to needing help, or support, or wanting to help spread awareness of people with special needs.

    ReplyDelete
  7. Thanks Arielle for making my points again for me: The Mighty is mainly not *by* or *for* disabled people themselves, but *about* them, for able-bodied and neurotypical to "come to terms", "to deal with", or as they so bluntly state themselves on The Mighty "to face" disability.

    I wrote this post six months ago. I see no effort to improve or listen on the part of The Mighty. I see a website intent on being there for everyone but the people they keep talking *about*, largely without input from the people being talked *about*.

    *About*, as in "awareness", as in centering of the allies is something we really should be beyond by now.

    ReplyDelete
  8. As the parent of a teenager with Down syndrome, I'm done with "awareness" and "support" and "grief." I'm not interested in how Down syndrome or other disabilities affects parents or siblings or other family members. I don't want a site that normalizes disability. I want to hear from people with a disability themselves - they're the ones who are going to help me best understand my kid, and how to raise her to be herself and be proud of her extra chromosome. The Mighty just doesn't offer that. It gives us more of the same inspiration and overcoming stories, which turn children like mine into an object to be dealt with, rather than letting actual people with disabilities speak to their own humanity and individuality. This isn't about me, and I'm not interested in reading a website full of people who don't have a disability trying to make it about them.

    ReplyDelete
  9. I generally like the website overall, but I agree with your points.

    Thank you for this part. This sums up my feelings exactly.

    "Is it really harmless to tell a new parent trying to suss out whether they're truly grieving a diagnosis or simply concerned about how their kid will fare in the world that is not designed for someone not considered typically developing, that it's okay to cry and grieve the "child they lost" and to let no one tell them they shouldn't? Not harmless in my book. Seems rather damaging for a kid who is everything but "lost."'

    We are still working on finding a diagnosis for my son. I don't feel like I'm grieving. I just want to help make sure he is able to live his life.

    ReplyDelete
  10. I have mixed feelings on this. On the one hand, you are right, the mighty is not a site by disabled people. It is about their parents, family and caregivers. I want to hear from disabled people. The mighty doesn't do that well. In the other hand, there really are two experiences to disability. That of the person and that if those who love and care from them. If actually like to hear both stories. Because honestly, if I'm only interested in hearing from disabled people, I should take no interest in what you've written. There are those who dismiss your opinion because it isn't that of experience as the disabled person. Many reactions to our children and ourselves are valid. I don't mourn my child's disability or what he could have been. At the same time, I do not dismiss parents because that's not what community and caring for others is about. I'm done with the US 's. Them mentality that's taken over.

    ReplyDelete
  11. I have shared your post so many times over the past few months, but had yet to comment.

    Thank you so much for your words, insight and perspective. This has really shaped my thinking.

    Love and Appreciation,
    Leah❤️

    ReplyDelete
  12. I understand what you are saying, I do. Maybe they should attempt to change their audience? I have a son who is newly diagnosed. I never grieved for the child I lost, but some do. It's not my place to tell them how to feel. Some of the stuff they have published has been helpful to me. What has happened though to if you don't like what they say, don't read it? If you think it can be done better, then do so! I think that The Mighty sheds light on the fact that it affects the whole family. Not a bad thing.....

    ReplyDelete
  13. I understand what you are saying, I do. Maybe they should attempt to change their audience? I have a son who is newly diagnosed. I never grieved for the child I lost, but some do. It's not my place to tell them how to feel. Some of the stuff they have published has been helpful to me. What has happened though to if you don't like what they say, don't read it? If you think it can be done better, then do so! I think that The Mighty sheds light on the fact that it affects the whole family. Not a bad thing.....

    ReplyDelete
  14. The Mighty is a site for melancholics. A melancholic is the most likely to be crushed under the weight of their own quixotic standards. The melancholic feels devastated when they see that their visions are not coming into fruition. This leads them to openly mourn and generate validation fodder for others. The Mighty excludes sanguine, choleric, and phlegmatic perspectives. Use the tag #TheMelancholy to raise awareness of temperamental discrimination on The Mighty.

    ReplyDelete
  15. Hi,

    This issue brings up what the disability community wants from a news/opinion website.

    I am conducting a survey into the news and opinion / journalism needs of the disability community and would really appreciate your help with designing a new service and website:

    http://mydisabilitymatters.com.au

    Dale.

    ReplyDelete

The Viking came home from a business trip packing a pink castle, a whole heap of princess and prince dollies and a carriage pulled by a unicorn. Life's good until someone swallows a crown or a glass slipper. I won't ever answer your comment, but I'll sure appreciate it while I'm sifting through shit looking for that crown. Yah.