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.


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12 Responses to Voice

  1. Beth January 8, 2016 at 1:55 pm #

    Hi Mel,
    As always, this blog is so thoughtful and well written. Thanks for making us all stop and think!

  2. Celebrating Phoenix January 8, 2016 at 9:47 pm #

    I just want you to know that some of us are listening! I’ve been listening and thinking and responding to these defensive parents who are refusing to listen. Some of us are listening.

  3. Stephanie January 9, 2016 at 12:20 pm #

    I will assume that a lot of this is directed at me because of my post yesterday. I know what happens when you assume, but I’ll take those chances.

    I’ve never discounted the voices of the disabled. Ever. I’ve never written that nor I have ever said that. My experience is my own, as a parent. I’ve never taken over the voice of my child in terms of putting words into his mouth. When I write, I write from my perspective. I have never posted something that I would be ashamed of posting about my son. Lately when I’ve asked him to pose for picture, if he tells me no, then that’s the end of it. I’ve even taken to showing him the pictures I’ve taken and asking him which ones he likes. I would never compromise his person in any way.

    These “rules” that have been pushed out assume that all of us parents have compromised our children every single day. That we are taking over and talking over our children. I would argue that most of us are speaking from our own perspective. We talk about our children’s disabilities because we need the support. We need the reassurance that we aren’t alone. There’s a line there, clearly. We shouldn’t cross it. No one is disagreeing with the disability community about that. What we can’t understand is the attack and yes, the chastisement. It truly feels like we’ve been called out like 4 year olds. No one likes to feel that way and it really should have been approached in more constructive way. I thought we were working together.

    There is now a huge amount of fear from parents. They are afraid to talk about disability, their children, their own stories because they are scared that they will be attacked. They don’t want to speak up. Many have expressed to me that they are simply going to withdraw from the disability community at large because of this fear. It shouldn’t be this way. But no one wants to be mobbed by people they don’t even know, telling them what they can and cannot do. I think asking people to think carefully about this is one thing, but creating a list of rules was just inflammatory.

    On a personal note, I was sad to see you unfriended me on Facebook. I have always respected your thoughts and candor. I truly thought we were friends. In case, I wish you and Ro all the best.

    • Rey February 4, 2016 at 10:46 am #

      If your first response is to get defensive and say you’re not like that, you missed the point of the article. -An autistic adult with really good parents who always listened and never tooted their horns about it.

    • Alice Brown February 16, 2016 at 9:55 am #

      Having a child with ADD, I know that my child could wind up at the Judge Rottenberg Educational/see ‘torture’ Center. Sen. Bryan Joyce has done so much to try prevent further torture from those electronic devices. (And he’s being punished because of it politically.) Children from many states around Ma. are sent there. I participated a few years ago in a protest, joining 3 busloads of Human Rights Activists from all over the country. How we in Ma. could allow that place with all the money it makes and all its lawyers to continue to harm children is beyond me. We’re still the ‘Snake Pit’.

  4. Meriah January 9, 2016 at 3:38 pm #

    Really shocked and saddened by Stephanie’s response. I think you must be, too. Big love your way for having the courage to write this post, and most of all for leaning into discomfort like you are.

    It’s not easy.

  5. Carly Findlay February 3, 2016 at 6:34 pm #

    I am so heartwarmed by this post. Thank you for listening to us actually disabled people. Thank you for not silencing us. After addressing my concerns with The Mighty and also trying and trying to engage with and educate Mighty Writers, I felt my words were futile and labeled as bullying. It was so disappointing. But this is a relief, to see that our words and experiences do mean something to parents of children with disability.
    Thank you.

    • Alice Brown February 16, 2016 at 9:59 am #

      And keep on working. If you want to organize another protest of that place that hires people off the street to use those shocking devices, let me know. They have even tried to get more powerful shocking devices, which at least was refused. There were only 3 people from Canton in that protest, joining 3 busloads of people from all over the country marching in protest of that place on Rt. 138.
      The advertising for that march was virtually non existent, although our Canton police carefully guarded us as we walked along Rt 138.

      They want us to forget it exists.

  6. Cristina February 3, 2016 at 7:30 pm #

    Such a lovely post, Melissa. Thank you for sharing. And let me tell you that it is being shared far and wide in the sibling sphere.

    I can’t seem to understand some parents (like Stephanie above) who take offense at the disabled voices speaking out loud what so many of us need to hear. One, I want to say to these parents who are up in arms, if it doesn’t apply to you, don’t worry, step back, turn the page, or better yet BE AN ALLY!

    Two, I read somewhere today something that I think everyone needs to hear: “Expecting marginalized peoples to disregard their own emotions to calmly educate you is the epitome of entitlement and privilege.” We weren’t listening to their voices until their voices got loud and a bit angry. That’s on us. Not them. We should have been listening all along.

    And three, Stephanie above writes: “Many have expressed to me that they are simply going to withdraw from the disability community at large because of this fear.” Well, isn’t it nice that *many* can withdraw from the disability community, walk away, go back to their other life away from the disabled voices that make them uncomfortable? The truth is, disabled people cannot walk away from the conversation. This is their every minute of every day. And if this is Stephanie’s child’s life, she better figure out a way to listen to her child’s tribe.

    So thank you, Melissa. I am incredibly heartened by your post!

  7. Lei February 3, 2016 at 9:04 pm #

    This is a wonderful post. Thank you so much for sharing this!

  8. Cheairs February 4, 2016 at 4:26 pm #

    I thank you for your post. As a parent and former blogger I decided two years ago to step away from the keyboard. I too am very guilty off what I like to call “live memoir writing” sharing openly only to look back and say,”maybe my son would not want me to share that” I am thankful for disabled communtity for their insight and for opening my eyes to how my “sharing” could bring sadness and pain to my child. I still write to work through emotions and maybe one day my son and I can decide together what to share with the world. Again, I thank you for you honest post. It is so greatly appreciated.

  9. Anne Grunsted February 16, 2016 at 11:37 am #

    Can you point me to some work published or written by adults with Down syndrome? We could all help by sharing that material in our parent groups.

    In the Ds community, I have only seen this discussed parent to parent while in other places it’s adult with disability to parent.

    I think the latter resonates more. I just personally don’t have access to adults with Down syndrome on a regular basis to be able to hear those voices in anything more than a sound bite. Let’s change that.

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