Parents of Children with Disabilities: Are We Speaking With or For a Community?

woman looks off with a worried expression on her face
From the "Ally Corner": Melissa Stoltz asks, "Parents of Children with Disabilities: Are We Speaking With or For a Community?"

I’m sad.

Recently, an exchange of words took place on Facebook, twitter, blogs, and large, national sites like The Mighty and Huffington Post.

I’m sad because this is an opportunity missed.

See, people with disabilities have been harnessing the power of the internet for a long time now in hopes of getting their own words out there. There has been various amounts of success in reaching national platforms, but the words are still there, ready to be scooped up, devoured, considered, and heard.

But I’m sad because the most important audience of all – parents of kids with disabilities – doesn’t seem to be listening.

As parents, we research our children’s diagnoses. We know pretty much everything there is to know about the logistics of it. How it might affect our children, what things to watch for, what services might be helpful.

But it seems we are forgetting crucial pieces of the puzzle: the perspective of people who actually have that diagnosis, and the voices of the larger disability community.

We demand (and rightly so) that those around us see our children as human beings, treat them as such, and believe in their potential. We demand that they hear our children. We wonder why they are so reluctant to do so, “even after all these years of advocacy and inclusion.”

When we first hear our children have a diagnosis, we do the natural thing: we reach out to other parents. We hope for answers and we hope for peace of mind.

It took me this long to realize that my fellow parents are only part of the puzzle and they can only offer me so much peace of mind. Only people who live with Down syndrome can walk me through what it feels like.

Oh, but that’s ok, we tell ourselves. We justify our non-involvement of people with Down syndrome by saying we are having private conversations or that we are talking about things only parents can understand. Let me be clear: these things are ok and good and helpful. The problem starts when we don’t leave that bubble, or react with anger when disabled voices encroach on that bubble.

It is a rare day that we invite people with Down syndrome to the table to talk. Even a recent television show that purports to be “about” people with Down syndrome heavily features their parents, and certainly holds the parents as authority.

The disabled community has long produced work (writing, video, song, art) to put voice to its many perspectives, but what catches our eye, and our likes, and our shares, and our national media is the stuff we parents produce. Our tearful admissions. Our heart warming stories. The things we produce without consent, and in some cases, without consideration.

So when the disabled community takes to twitter and facebook and national media to remind the world “nothing about us without us,” I think it is time for the parenting community to sit back and listen.

I get it. I do. Some of what is being said makes it sound like parents aren’t important at all. Some of it sounds like we’ve done irreparable damage. Some of the words are critical, some are chastising. I get why the gut reaction is a roll of the eyes and a heels-dug-in commitment to “do what I want” regardless of what the disabled community is trying to say.

But when someone comes at you with anger, fear, and sadness, I think it is the perfect time to stay silent, listen, and get humble. The disabled community is asking for allies, but that can only happen if we fully examine what the parental role means in the context of disability.

That examination can only happen if we listen and carefully consider what we are hearing, rather than insisting that the disabled community is wrong about its own lived experiences, it own desires, and its own hopes for the future.

Parents, think about this: ignoring disabled voices is exactly what frustrates, saddens, and angers us about the world in regard to our children. We would not stand for “outsiders” doing it to our kids – so why do we persist in doing it to our children’s own community?

The world ignoring our children starts at home if we are unwilling to listen to our children’s peers. We are part of the problem.

In a nutshell, this is what the recent campaign is asking of parents:

  • consider what, why, and how you are posting information about your child
  • would you publicly share this same information about your other children, an aging parent, or yourself?
  • are you inadvertently (or intentionally) spreading an ableist message, or sharing inspiration porn?
  • are you living the principle of “nothing about us, without us”?

If we want dignity and respect and consideration from the world, then we need to show the same as parents – not just for our own children, which we do naturally, but for their community. We can be in this together, but parents need to scoot over a bit, even when our children are non verbal. Part of advocating for our non verbal children is making sure the voice of their community is amplified and heard; it doesn’t stop at merely being the voice for our own children.

No one has called for a blanket ban on parent groups, blogs, or social media postings. Our children’s community is merely asking us to think before we post, and to keep private conversations private. There will always be a need for parents to speak to other parents. Parents reaching out to parents is a helpful, healthy thing as we encourage each other to be even better advocates and allies.

And to be clear, I am guilty of all of this – ableist posting, inspiration porn, divulging information that I probably shouldn’t have. I am not holding myself out as perfect, but merely sharing where I am in my thought process surrounding voice and dignity. I am a work in progress, and hope my fellow parents are willing to join me in this work.

We just need to remember not to speak for, but to speak with, and to look to those who have a disability for guidance.

____________
photo credit: searching ( #Portugal #Lisbon #portrait ) via photopin (license)

Written By

Melissa Stoltz is a writer, reader, policy wonk and mother of two. When she isn't writing, you can find her watching episodes of Star Trek: TNG and knitting. (The answer is Star Trek, always Star Trek.) You can find her at: www.gardenofmyheart.com

9 Comments

  • Melissa,

    Thankyou so much for this amazing piece of writing. I really appreciate that you value disabled adults’ perspectives and experience 🙂

    I am a writer, and adult with a rare, severe skin condition. I identify as being disabled.

    I regularly receive comments from parents telling me I’ve helped them – which is a real privilege. It’s nice to be able to give them some hope for their children – as I know they are facing an uncertain time.

    But it can be the other comments that stick with me, sadly. The ones telling me I am not a parent so not qualified to give advice about oversharing kids’ stories online, or that I’m too optimistic, or that I will never know what a parent’s grief feels like. I might not be a parent yet, but I was once a child with a disability. I was once a child screaming in pain in the bath, and who got cream all over someone else’s furniture and was made to feel bad. I was once a kid with no friends. And it makes me cringe to see stories like these going viral. I am now an astute, experienced and educated adult (qualified in journalism) and I think can give guidance about how to tell a story, and what might be best to leave off the internet.

    And when myself and others speak up about language guidelines, ableism and over sharing, we are told we are mean, silencing, bullies.

    In all of this Mighty mess, the disability community has been painted very badly. As I’ve written on my blog, We aren’t saying don’t write or share, we are just asking parent writers to consider what and how they write or share. If they wouldn’t like something being written about them online, don’t write it about their child. Blogging about illness and disability can be so beneficial when it’s done mindfully and respectfully. The parent and carer voice is very valuable and necessary, but not at the expense of a child’s privacy and dignity. We (the disability community) aren’t the enemy. We aren’t spouting hate or silencing them. We are speaking up because we are passionate about human rights and equality – isn’t that a trait they’d like to see in their child too?

    I have written a few pieces that you might be interested in:

    Parents oversharing their children’s stories online: http://carlyfindlay.blogspot.com.au/2015/07/parents-blogging-about-their-children.html

    The problems with The Mighty and my suggestions for improvement: http://carlyfindlay.blogspot.com.au/2015/12/the-problems-with-mighty-and-my.html

    An open letter to The Mighty http://carlyfindlay.blogspot.com.au/2016/01/an-open-letter-to-mighty-being-mighty.html

    Thank you again, I look forward to reading more of your work

  • Thank you so much for writing this. As a disabled adult, a disability blogger who grew up as a disabled child, I have watched this conflict brewing, and participated a bit myself. Please know that your heartfelt words are greatly appreciated.

  • I think it’s important for the disability community to know that there are parents like us out there.
    I am embarrassed by some of the behavior of the parents, and I have only read a small portion of it all.

    I think one of the most important things you said is: “our children’s community”.

    Maybe some parents will really take that in, but I guarantee you that the majority of them won’t.

    Most parents like to believe that their children will “get better” or be “fixed”. I think it is incredibly hard to see their child as part of the disability community. They’re still in this “grieving process” so many of them talk about. Some are still struggling with seeing themselves as victims. They’re spending every waking moment looking for the therapy that will be “the one”.

    I honestly think it’s hard for many parents to think about their child being a part of the disability community. That’s not what they want for them.

    I will say that I’ve met very few parents, like myself, who care about disability rights and what it means for the entire community. I think they fail to realize that their child will have to live their life (as an adult) in this society we live in, and what that means.
    I think they focus on the first 18 or 20 years, and forget that 20 years is really only a quarter of their life.

    As parents our job is to raise our children so that they will be the best adults they can be. I think parents sometimes confuse raising their children to be great adults with working on getting them to be the most “normal” adults they can be.

    And most parents only see themselves as being responsible for their kids for 18, or 20 years, and then the majority of their job is over. So I don’t think they think about this world their child will have to live in some day.
    They’re more interested in making their kids as “normal” as possible, rather than working to create a world where their child would be accepted as they are.

    I honestly don’t know how you get parents to take the focus off of themselves long enough to really try and listen, and take in what the disability community is trying to tell them. Maybe I’m too cynical. I don’t know.

    I am glad this has happened, however. Maybe it will at least plant a seed in some parents hearts and minds, and maybe they’ll be ready to listen at a time in the near future. We can only hope.

  • Star trek isn’t reality, one’s mean to livelihood, it’s an escape outlet, deal with issues facing disabled of all ages, parent/ chi
    ld or child/parent.

  • I so appreciate this. The debate has been so heated and even nasty that I (a hearing parent of a Deaf child) withdrew, even though I wanted to listen and learn. What you’ve written shows empathy and humility and an assumption of best intentions – all things which have been largely lost in the finger-pointing and defensiveness that have characterized this firestorm. Thanks for creating some room to breathe in the middle of all of this.

  • Well said. As the parent of a young child who could be considered disabled, I have spent a lot of time and energy in the past couple months evaluating my relationship to the disability community, my attitude towards my son’s conditions, and the need to think of his future self and respect his privacy. I have been in debates with disabled advocates in which I became defensive, although not – I hope – rude or disrespectful. Even though I bristled in response to the *way* some of their points were expressed to me, I did listen, I did lie awake thinking about it, and I did take it to heart. I understand where the anger comes from, even though it makes it hard to listen. I have incorporated a number of blogs by disabled adults (including Carly’s) into my regular reading. My attitude is evolving and I am growing, as a parent and a person, from this discussion.

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