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!
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.
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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