I need to write this post.
Even if you hate me after reading this, even if you never want to read this blog again, I need to write this post.
You see, I am deeply disturbed by parent bloggers writing – and claiming enormous attention for – their particular spin on “special needs”. On disability.*
There seems to be a tangled line that is walked upon, one with a eye out for what will be popularly accepted and appreciated, and another with an honest ignorance regarding disability.
I’ve said this time and again on this blog:
Having a disability does not suck. Living in an inaccessible world sucks.
Moxie having Down syndrome does not suck; her living in a society that has such a lack of appreciation for people with Down syndrome is what sucks. My being deaf or having PTSD/TBI/bi-polar disorder does not in and of itself suck (but okay, the mental bit can suck); living in a world that forces me to use the telephone, to interact aurally, that bases job competence on being able to hear and process information in a mainstream kind of way is what sucks.
For my wheelchair using friends, not being able to walk does not suck. What sucks is not being able to access buildings, parks, the world in which they live and would like to be a part of.
For my blind friends, not being able to see does not suck. What sucks is living in a society that revolves around sight.
– read the Cool Cat series for more. Please. Don’t take my word for any of this: read the voices of my friends. Listen to what they have to say about disability.
Disability does not suck. The inaccessibility of our society and the way in which our society does not value disability – this is what sucks. This is what makes it difficult.
And this is something that we can change.
We – you and I and my husband, my brother, the neighbour, your cousin, your mother, your grandfather’s sister – we, all of us, are what makes a society. We are the ones who make or break it. We are the systems of change.
Together, we are powerful.
When we talk about disability, when we write about our experiences with disability – we must do so with an eye on social justice and social change.** This is important so I’m going to say it again.
We need to approach disability with an eye on social justice and social change.
If we hope to change our society so that no part of disability sucks – for ourselves or for our children – we need to disregard what popular culture says or loves us to say about those “special needs kids”, about disability, about the disabled, about people with disabilities.
We need to not only turn tail on it, we need to stomp at it, crush it out so that we can rebuild something that is beautiful and that values each and every person that lives and breathes in our world.
This isn’t easy.
It’s not easy because our mainstream culture does not want to hear this. They yearn for, – they crave! – the stories of how you are so jealous of them. How life is harder for you. How challenging it is to care for your child with a disability. You throw them some fodder for some inspirational porn and they’ll swallow it with one gulp, swipe their hand over their mouth and hang their tongue out, panting for more. MORE!!
You want hits on your blog? You want newspapers and magazines to pick up your posts? You want to be popular and successful as a writer? It’s not as hard when you are telling people what they want to hear.
But when you do that, you are not keeping your eye on social justice, on social change. Your story is not being woven into the rich new fabric that those of us who believe in the independent living movement are struggling to weave.
Your story is actually helping to fray those strands.
And your story is your reality, your story is yours. We all have those stories. The choice is which do we care about more: sharing a story that ultimately perpetuates the myth that disability – “special needs” – is this awful, fearsome, pitiable, to-be-avoided-at-all-costs thing.
Or share a story that will help to weave a new fabric that will help to transform our society.
Now I can hear some of you calling out,”but it’s our truth! You mean to say we can’t share our truth because we are scared of how others are going to interpret disability?”
For those of you that need support – and who doesn’t? I know I did and do – I urge you to seek out parent-to-parent groups. There are all kinds out there – they exist in most all disability-specific organizations. They are there in the Down syndrome Connections, in the Cerebral Palsy organizations, in the Deaf Associations. They are there.
Seek out support in person when possible, online if it’s not.
But there is this line that I have mentioned in previous posts, this line in which you cross at some point. One in which you are struggling to make sense of some aspect of your child’s disability, you are striving to understand – and one in which you have let your eye stray from social justice, social change. Where you become so consumed with your questions, your thoughts, your anxieties, that you no longer think of the long-term repercussions of your words. You no longer think of the effect that your words will have upon a mainstream society that is terribly eager to continue with the prejudice, discrimination and negative assumptions that “disability” is regularly bathed in.
When you talk about disability, when you write about your experiences with disability – please do so with an eye on social justice and social change.
* Because disability and special needs are not interchangeable, because many with special needs in an educational setting (- as the word was created for) do not have a disability, because many with disabilities do not have special needs.
**I want to thank my friend Alana for writing that originally on Facebook
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.