As a parent of a child with Down syndrome and as a woman with a disability, I straddle two worlds: the community of people with disabilities and the community of parents of kids with disabilities. Add to that the fact that my main disability is deafness, and I am in a whole ‘nother sub-community within the disability spectrum. The deaf, you see, don’t usually integrate much with other people with disabilities. A lot of deaf people won’t even consider themselves as having a disability – but that’s another blog post.
It wasn’t easy growing up, deaf. But sometimes I’m not sure how much of it was being deaf and how much of it was growing up as a missionary child, moving every few years in countries that my parents were completely foreign to. Growing up a 3rd Culture Kid isn’t often easy. Growing up, point blank, isn’t always easy, either, is it?
But the point I’m trying to make is that I did it. I made it. I went through the shit-storm of my adolescence, the rage, the self-harm, the abuse, the self-esteem that was so low it literally hurt me. I walked through all of that – and it took me something like twenty years to develop a thin scab that protected my heart, my hurt. I was healing, and in the protective embrace of the proud and strong disabled community of Berkeley, I found my own ground.
I found strength in the disabled community, a sense of pride in who I am, in and of myself.
I am deaf. And I have PTSD and TBI. I don’t live my life overcoming these things; I live my life on the platform of these things. Which is to say, the way that I perceive the world – both in how I hear as well as in the ways of my brain – is the framework upon which I move in my life. It might be different from your framework, but I don’t need to overcome my own framework to try and make it more like your own framework, do I? Nor does anyone with a disability. We all have our own frameworks and those very frameworks may or may not include a disability but they all help us to experience our lives in a uniquely marvelous way.
In other words, I am deaf. My world functions wonderfully as a deaf person. I like being deaf. I don’t need to try and not be deaf in order to serve anyone else’s idea of what a good life is. I have my own good life. And my own good life includes being deaf.
I know for a fact that a great many people with disabilities have come to the exact same conclusion that I have, either after similar half-lifetimes of pain and disenfranchisement (or not). We realize at some point that we LIKE OURSELVES for who we are, that our disabilities enhance the way we experience our lives.
We realize that we don’t need to change, we never needed to; what needs to change is the way the world views disability.
The current viewpoint (either a burden and a lodestone or a hero who inspires others because of the ability to frickin’ blink) doesn’t serve the millions of people with a disability who want to work, receive an education, be married, have sex, be parents. It doesn’t serve the skill sets that people with disabilities have, it doesn’t recognize or use SO MUCH talent within the disability spectrum.
The current viewpoint seeks instead to mold people within the disability spectrum into the narrow confines of what is valued in society right here, right now. And that is totally outdated, useless, a waste.
Now, my daughter has Down syndrome, a disability that was utterly foreign to me before I had her. A disability that has been poorly understood for most of it’s known existence, and one in which it is rare for adults with the disability to form their own communities and collaboratives.
Parents within the Down syndrome community therefore, walk this line between endeavoring to advocate for their child with Down syndrome, trying to make the world more hospitable towards people with intellectual disabilities and helping to facilitate the expression of people with Down syndrome themselves. Stories – always a unique and powerful means of social change – are especially important in the intellectual disabled community, because they are a means of connecting, supporting and empowering one another.
That line is crossed when the parents try and tell their child’s story.
You see, noone knows what another person’s life is truly like. You just don’t. Your interpretation of an event, an expression, an utterance, is all based on your own experience, history, personality, perceptions. You simply cannot tell someone else’s story for them, you can’t explain their life for them.
In gender terms, that’s called “man-splaining”, in racial terms, it’s “white-splaining” and in disability terms, it’s “able-splaining” – when an able-bodied person is attempting to explain our experience; often to us.
I think you can imagine how it must feel to me and to others in the disability community, to reach this point of acceptance and pride in who we are and what we bring to the table, and have some able-bodied parent (or similar disability-ally) try and explain components of our experience! Worse, to become objects of rampant inspiration porn; made heroes by the very fact that we exist!
The Mighty
This is a site that I was initially unsure of and so when they approached me and asked for specific pieces, I helped out. I know that my Down syndrome Blogs site was ready fodder for them; they went through it and found quite a few blogs and pieces to post on their site. I even helped make a post go viral for them on my own Facebook page – over 35,000 shares!
But over time, I’ve noticed that while they say they are all about the voices of the disability community, they really aren’t. They are about what is going to be read and shared, bottom line, and that is NOT the stories that are truly by and for disability. Those are the stories that are by and for parents of kids with disabilities. Those are the stories that are going to get shared and passed around and “awwwww’d” and cried over.
The Mighty is disability on click-bait. It’s the viral-nova buzzfeed of someone’s idea of disability.
The Mighty is not built by people with disabilities; it’s built on the stories of people with disabilities. It’s built on the pain of our experiences, but seen through the eyes of others and explained through their own personal lenses.
And, frankly, I’ve had enough of it. I’m just sick and tired of able-splaining. I’m tired of sites, however “well intentioned” that are about promoting the stories of people on the disability spectrum from an able-bodied perspective. I’m tired of the porn. I’m tired of all those letters “To The Person Who Had an Interaction with My Son” – because while the parent has every right to write those letters on a parent-focused site and a site that is purely about parenting a child with a disability, that right is not theirs on a site that purports to be about stories of people with disabilities.
To be clear, I don’t think it’s the parent’s fault that this is all happening. I know many parents that have written for The Mighty, and they do so both in the hope that their writing will change things that are foul in the world, and of course, in the thrill of getting published. I know that most don’t realize that they are unwittingly becoming The Mighty’s best free marketers (“look! I got published by The Mighty!”) with their shared links and glee in being recognized by someone who values their writing.
The Mighty is not a site that is honestly seeking to empower the voices of my own disabled community. They are not. They are out to promote the sop that people with disabilities have specifically asked them to refrain from posting because they disempower us – namely, the telling of our stories by another, the use of inspiration porn, and posts that are designed to tug your heart and jerk your tears.
And this is why I’ve had it with The Mighty.
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AFTER NOTE:
The follow up post to this is Telling Your Disabled Child’s Story, which I wrote because I felt that piece was misunderstood in this. If you are a parent, that post is specifically for us.
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Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
I love this post!! Recently I have noticed the quality of The Mighty’s articles have decreased and I didn’t understand why until this post. I have been blogging for 5 years. My first blog Lilly Through The Valley was my learner blog and I closed it a year ago. Through it I learned that as a blogger the story I tell is my own, not my daughters. When I launched Mommas Wonderings I tell my story that often has my experience raising an atypical child and her sibling. I am going to go un like The Mighty!!
Wow Mariah! Cause for thought – as always! Thanks for sharing and hope all is well with you guys! <3
It totally is click-bait, but I think there is a place for both the perspective of the parent and the perspective of the person with the disability. I just reviewed “An uncomplicated Life” by Paul Daugherty on my blog and said I really appreciated it because it is written by the person in the same role as I (the parent). Futhermore, there is far fewer pieces written by individuals with DS. So if you have any recommendations, I would love to hear them. I am ordering “Count us in” but that is all I have found so far.
This is a very important piece. Thank you! I don’t follow the Mighty closely enough to have this kind of understanding of their content. I have heard similar complaints from other parents (in fact, I think I recall someone telling me that a piece of theirs was rejected because it wasn’t positive enough). My only caution would be re your comment that parents should never tell their child’s story. What about children who cannot speak and do not have a robust form of alternative communication? There are so many in this world who would rather keep our kids invisible, rather not hear about the joys, challenges and injustices of their lives or our lives as families. Rather not see images of children who aren’t “able.” I think parents need to think very carefully about how they write about their children. But I think they also need to think about the cultural forces that would rather silence their narratives. No, one person can never fully understand another person’s life. A parent can never fully understand a child’s life. But when a child is not able to tell their story, is it not preferable to get “closer” to what their experience is through the understanding of family around them, rather than just omit the story altogether? Lots of food for thought. Thanks as always xo
Thanks, Louise.
I’m kind of wondering where you think I said that parents should never tell their child’s story?
I said that they literally can’t tell their child’s story, but of course they can tell their experiences parenting their child, what the story is from their own vantage point. I think that type of storytelling is absolutely crucial to our community too – I thought I was clear in that, when I talked about the role that storytelling plays in the Down syndrome community in particular.
I think the problem starts when the parent doesn’t even realize they are trying to tell their child’s story. Rather than saying, “this is is how it was from my perspective, not having Down syndrome but watching what was happening, knowing my child, etc”, they write FOR the child. There is a difference. They say things like, “Lulu wants you to know that she sees beauty in everyone” – but Lulu can’t talk. So the parent is putting words in the child’s mouth.
You know what I mean? There is a difference between helping to tell what happened, helping to craft a story and tell it as an ally, as a parent, and actually trying to put words in the mouth of the person with the disability.
Hi Meriah. I’m Mike Porath, founder of The Mighty. You may be surprised to hear that I actually agree with much of what you’ve written here. I love hearing you say, “We realize that we don’t need to change, we never needed to; what needs to change is the way the world views disability.” This was one of the reasons we started the site. Each writer is going to have his or her own opinion on how well we do that. I want you to know that we’re genuinely trying to get better. I’m going to share your post with our team because we can learn from you’ve said here. We’re still at the very beginning stages of this and I hope that we can become a resource that you find helpful as we grow into something that is much more than just stories.
AGREED. So weary of the open letters. So weary of the lists of things not to say. And especially enraged that they claim to value disability stories, but not enough to PAY THE PEOPLE WHO WRITE THEM.
The security concerns alone would make that not worth it. Most payment methods require your location, which naturally makes people wary. That alone would deter many potential writers.
totally agree
So agree, as part of an entirely disabled family.
You make many good points but I think that in some places you paint with too broad a brush. “That line is crossed when the parents try and tell their child’s story.” I disagree. It is my experience that most of those of us who are parenting children/adults with combined severe physical and intellectual disabilities are motivated to write in an attempt to express that which we see in our children or adult children and hope that others will see as well. I am not talking about “inspiration porn”, but simply about creating narrative that does more justice to our children’s lives than a quick glance can provide. My experience with writing parents is not one of people searching for or getting off on “the thrill of getting published”: harsh and condescending, friend. We parents of the severely disabled are, as Louise suggests above, the only voices for people who, quite literally, have none. I am not out for tear jerking, but for a second and hard look at valuable, but often invisible, lives.
I’ve gotten fairly annoyed lately with the pieces they have published, especially the lists and the open letters. I have eye rolled a little too frequently and that’s when I know I don’t want to read the content anymore. And I’ve been published there twice, so it has nothing to do with me “being jealous” as someone tried to tell me recently.
Like Louise, though, I would say that I have to disagree with your discussion point about parents not telling their child’s story. Here’s the thing–my son is very, very likely never going to speak. At all. Ever. There are times when I need to be his voice. Period. Yes, he is working on using AAC and I really hope that as he grows, he’ll be able to speak more and more of his mind using AAC. But I’m not going to let the world pass him by because he can’t speak. I’m going to speak for him and I’m going to share him. I will never get his thoughts perfectly right because I’m not in his mind. But I’m going to maintain that silence either.
That’s where I am at too. My connection to the disability community is through my daughter who has DS. I don’t speak for her, I speak for me. For my experiences raising her and loving her. About my experiences with one child who has DS and how my life has been profoundly impacted and how my comprehension of the world and about disability has been profoundly changed. There is value in sharing my story and in letting others in to peak at our life which includes disability. This is what I get out of sharing on the Mighty.
Meriann, I too am “different”. I don’t like to hear ” u poor thing”. I never thought of all the tear jerker stuff as porn but it really is…for the unmarred. I agree that my struggles have made me the strong powerful woman I am. I can intimidate the manliest men and the bitchiest women. Without all of my lifes hell I would still b a naive child believing whatever anyone tells me. Living off the grid? To me, that takes strength and guts. This is my first time reading anything by you. I like ur stuff. Hope I can find ur blog to read more.
Best regards,
Terri
Am I understanding correctly that you are frustrated because people are writing pieces for the disabled instead of allowing the disabled write for themselves? What if there were a section devoted to occasional pieces written by caregivers of the more profoundly disabled who cannot write for themselves about being a caregiver?
Also, would the mighty let you publish this piece? Just thought I’d ask.
No, it’s the WAY that this is being done. There are some very fine pieces by pwd being published by TM, right alongside pieces that clearly designed to just be tearjerkers. The mix does not sit well with me. I think stories by caregivers of their experiences are needed and wonderful, but I don’t think caregivers should be attempting to tell the story of the pwd in the voice of a pwd
The content quality of The Mighty is very variable. I feel that most of the content is processed to make it more appealing. I also feel that the editors passively discriminate against writers based on their temperament. I am a ChlorSan that submitted to them several times with posts written in the ChlorSan style and all of them were rejected. I feel that the content is mostly generated by MelPhlegs with the occasional MelSan joining in and that all other temperaments are shunned. Pretending to be of another temperament is as bad as pretending to be neurotypical as an autistic person; I think The Mighty is discriminating against writers based on their temperaments.
I watched our mom speak for my brother and get it wrong over and over and over and over. She ignored and disregarded my opinions/observations about Mark. Simply because you are someone’s parent/guardian does not mean that you will, by default, understand them. That I could speak reliably was inconvienient and distressing. I am Autistic and spent my entire life interacting with my Autistic brother. That I didnt agree with our mom about Mark was a source of strife between us.
I know my brother understood me better than my parents did, too. I was so grateful to have him and his understanding. I’m sure your brother feels the same about you. Thanks for your comment.
Thanks for this. I’ve long had a similar beef with The Mighty. I understand how easy it can be to make your child part of your identity, especially for “special needs moms” who are always in advocate mod. As a grown woman with cerebral palsy I can see how that undermined my attempts to be treated as an adult by the people around me, and eventually my relationship with my mother.
I know this is older, but I need to say something. I have been leery of The Mighty’s handling of mental health issues. With that issue, they seem to favor pieces that perpetuate the medical/disease model, focusing on lifetime medicating, rather than recovery, therapy, and learning tools. I actually submitted a piece that was about my own recovery–it was not anti-medication, but it focused on the non-medical tools I used in order to find peace and recovery. And it didn’t take them long to reject it.
I agree, The Mighty wants click bait. Plain and simple. Negativity equals more clicks.
Thanks. Yeah, this is older, but I still stand by it. I won’t publish anything with them.