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.
Impressive!!!! Very well said!!!
There really is so much about this post I agree with and I want to cheer about the social justice parts and independent living. Gosh how wonderful this world would be to have made room for my son (who has a disability). I think, however, that there is a more nuanced way to look at it. Isn’t it important to acknowledge our reality ( the world is not accessible and some parts of disability are actually dangerous) and share that part of our story not in a pity way but in a please join us way?
I’m letting this roll around in my head a little and will probably write a post about it. I’ll share in the comments when I do.
I appreciate your passion and bold voice.
I completely agree, Heather, I do. I think there are ways to share the negative stuff – and some of it SHOULD be shared, and some of it needs to be explored. I know I annoyed a lot of people when I myself was exploring the ‘syndrome’ part of Down syndrome – like, what is it that crosses the lines of individual children developing and what is it that is the commonality of people with Down syndrome?
It’s just when it becomes more than that, when the writing and the talking is primarily from the ‘woe is me’ approach. When it’s setting up people with disabilities or families with a child with a disability into this separate “special needs families” group, when it becomes divisive, sets us all apart and keeps up with that.
that’s more along the lines of what I’m talking about.
there was something that I saw on facebook too, where someone was talking about the necessity of talking about the negative in order to receive government services. OF COURSE!! I’m not talking about what you need to say or do to get government services! that’s a totally, completely different thing.
I don’t know if I make sense… but I do appreciate your comment and I’m looking forward to more discussion.
ps. thanks for saying I have a bold voice! Wow, that sounds really cool
Ok. Here’s my response. It was good to think this through. Come join us in the comments.
Wow! thanks for letting me know!
Your post is certainly chewy – I wish I could talk more but we are hitting the road again today and I’m about to not have internet access for the next few days (except for the random stop at Starbucks/wifi-free place).
I’ll be tuning in again when I can.
Hi Meriah — This felt too much like censorship for me:
As always, thanks for making me think.
Sorry, we are on the road full time now and wifi is spotty.
You read ‘censorship’ in that post? I admit that surprises me. I didn’t think that I said to lie in there, nor to manipulate the truth. I was simply saying to, as Extranjera says (and says well), “consider what the ultimate target for representing disability is for whoever is doing the representing”.
I suppose it is different for you, as you come from the robust medical model of disability, and did not grow up with a disability yourself, did you? Perhaps that flavours your approach to this.
Wow. Why would you say that I came from the “robust medical model of disability?” Are you implying that anyone who doesn’t themselves have a disability supports the medical model? I didn’t have any exposure to disability growing up (other than the typical stereotypes that have been passed down from generation to generation). And I certainly do not support a medical model of disability.
What I read in your piece is to not ever present a challenging picture as a parent raising a child with disability (the “woe is me”) picture.
I guess we could look at other marginalized groups and ask why they don’t do the same? Perhaps women should just “stop complaining” about gender inequality? And what about people with mental illness? Why don’t they start writing in a more upbeat manner? Or parents of kids who are transgender. Why do they focus so much on the discrimination they face?
When is it okay for parents to write about “real” challenges? You have done so in the past. Will you be scrapping those pieces? I think we need to bring the humanness to this topic, and that includes all aspects of experience.
You probably know that there isn’t much that I’d disagree with in this post. However, and I see that you also touched upon it in your first reply to Heather, I’d like to suggest that this is in fact just one side of the coin that you bring attention to here. The overly negative, ‘my life is harder than yours because of my child’s diagnosis’, ‘it’s all the chromosome’s fault’ type of stuff we’re putting out there to me seems like just the flip side of the romanticizing and mystifying of the chromosome/disability coin. I’m not sure we can truly rewrite or redirect the oppressively negative narratives unless we also address that which reduces disability to something that is also deceptively palatable, even a relief, and so often goes accepted.
I don’t see this as censorship at all as Louise feels it to be, but more a call to consider what the ultimate target for representing disability is for whoever is doing the representing, and reflection on that can never be a bad thing, I just wish your call for this reflection covered the chromosomal unicorns as well.
Thank you for your comment – I love how you framed this post – and I agree with you in that the unicorns should have been included. They should definitely have been included.
I just found your blog. I love your posts. I know this is a older post, but I need to share my concerns. I have cerebral palsy. I have been involved with the IL movement since I was 17. I’m 33 now. I am surprised by the way you came at parents because you are also a parent and a person with a disability. You see this topic from multiple views. That is awesome. Here is why the IL movement can not reach a wider audience. We shame parents, when we need to be working with them. I recently attended a IL workshop where parents were being described as barriers. People in the IL community want to be accepted but our community can discriminate with the best of them. You don’t think like me, you’re not disabled enough, you don’t really know what disability is about and so on. This is all BS. There are great parents who are also great advocates. I think it’s ok to write about social justice issues and a person’s feelings. Write about both. Your posts are encouraging and thought provoking. That’s not a bad thing. And a parent wrestling through the feelings of having a child with a disability is also a good thing. It’s shows other people we are human.
And I have a problem with advocates not being real with people. I agree with you that living in a society that does not value disability sucks. But there’s days when having cerebral palsy is tough. To pretend that we don’t have rough days, makes us fake to people. Someone who acquires a disability, that sucks, but life can be good. I also battle depression. Depression sucks. I love my life. I’m married and have a four year old son. Dealing with the ups and downs of my CP is not always fun. We need to be real with people. We are not Super Men and women. Disability pride is good, but it can be misleading when we are not real about our disabilities. I can’t use my left hand. There are things I cant do with my son. This sucks. But I can do others with him too. But I’m honest about feelings. Sometimes, cerebral palsy sucks. This doesn’t make me a “woe is me” type or a bad advocate. It makes me human. When I work with younger people with disabilities through their own journey of independence, they are able to see me being real in my own journey.
Thank you for your heart.
thank you so much for your comment and for sharing.
Trust me, I get it. It’s so hard to talk about the value of having a disability without it twisting into the supercrip thing, hard to talk about how to focus on social justice without hiding the truth (- that’s it is not always hunky dory, peachy-keen), how to speak without alienating allies (and I agree, many parent allies are absolutely fierce, definitely people that I respect and am grateful are willing to fight this fight with us).
The way that I see it, pity is our number one adversity – it’s just impossible to really push for equality and value when there is that going on, not just from outside our community but from within. this post was really about that, and about the numerous parent bloggers that are writing posts and articles about how they have it so hard, they are a “special needs parent” or that their children are “broken”, etc.
I’m not saying to lie. I’m not saying to not tell your truth, but I’m putting the idea out there that WHILE you say your truth, keep your eye on the prize: social justice.
And think about what you are saying – is it really your child with Down syndrome that is making your life so hard for you, or is it societal attitudes surrounding Down syndrome? Is it really your deafness or is it the fact that nothing is captioned?
That’s really it, but I can’t tell you how much I appreciate your commenting because I really love these conversations, especially with other people on the disability spectrum and also fellow parents. I think we can find the answers that speak to us on a personal and individual basis by having these types of conversations