Why is it so important for parents to listen to disabled advocates?

There is a fair bit of misunderstanding of the message from disabled advocates in the situation around the discussion involving The Mighty and its history of promoting the voices of parents of disabled children more than those of actually disabled people.

I’m seeing parents saying that disabled advocates are silencing them, and making unreasonable demands on them. One article in particular says that the situation made a previously safe place for parents unsafe. As I understand, that author (and probably others) feels that the Facebook group where contributors to The Mighty hang out was ruined by disabled contributors speaking up about the way they felt they were treated and represented by The Mighty, during a social media campaign addressing issues the disabled community has with The Mighty.

I haven’t said much about the whole situation until now, mostly because I’ve been really busy with some personal stuff. But I would like to talk to the parents who feel so slighted by this whole situation.

The reason you perceived that writers group as a safe place was because it was a place where your views were not challenged. The reason it became uncomfortable for you was because the privilege you experienced in that group was pointed out to you. 

What do I mean by privilege? As a non disabled parent writing about your life and your childs life, you have been doing that for some time with the only feedback you received being affirmation. You have been told how valuable your story is to other parents. You have been told how much others can relate to you. You have probably been sympathized with if you have said you are having a hard time.  I know this, because I was a parent blogger. I had that privilege.

I’d like to tell you about how that changed for me. A few years ago, I was in an “autism bloggers” group online. It felt like it was great. I was making friends with the other parents and we were sharing our experiences. And then some autistic advocates joined in a conversation and pointed out how what we were saying was hurtful to them.

Most of the parents in that group went instantly into defensive mode. I felt pretty defensive myself, but it occurred to me that if what we were saying was hurtful to autistic people then chances were it would be hurtful to my autistic kids too. So I decided I’d best swallow my pride and listen for a bit. So I did. I also tentatively asked some questions, and by doing so found the autistic community of advocates to be welcoming and accepting of people who are willing to listen and try to understand.

The short version of this story is that because I decided to put aside my feelings of hurt and defensiveness I found a new community of friends, learned a lot, discovered lots about myself and my own neurology, and my life- and my kids lives- are immeasurably better. It was difficult to be confronted with my own ableism. Over the past few years I have done a lot of self examination. Sometimes I read something that makes me bristle and then after some thought I realise that I don’t actually do the things being discussed, so I ignore those defensive feelings. Other times I realise I have more changing to do.

Now, I know that all this stuff with The Mighty has been pretty full on…. but it’s not a new discussion. In fact it’s been going on for ages now. I realize that many of the parent writers may be unaware of that, but it is true. It is unfortunate that you have been caught up in the messiness of it, but I firmly believe the mess is necessary. 

You know that privilege I mentioned before? Well, disabled writers don’t have that privilege. When they write their words are questioned, their motives are questioned, their intelligence is questioned, their value is questioned, and often all that questioning is followed by a line like ‘parents find their kids so hard’ or something along those lines. And that is wrong. I know it is not your “fault”. But it is wrong. Because when we talk about disability it should be the voices of the disabled that are front and centre, just as when we talk about women, it is women’s voices who should be front and centre. 

As a newly identified autistic woman, and parent to autistic and otherwise neurodivergent children, I am in a bit of a unique position. I kind of feel like I have a foot in each camp here. Last year I was writing as a parent, this year I am writing as an autistic person. Identifying that I am autistic doesn’t give me a free pass now. I am still accountable when I stuff up, and hope that I will manage to respond graciously when that happens. I’m still learning, growing, changing, working on becoming better. It’s a tricky transition and a bit of a mind blow in many ways. 

But I’ll tell you what this transition has confirmed for me? That the voices of disabled advocates are invaluable. If it weren’t for them I would not have had the opportunity to learn about myself the way I have. Without them my kids would not have a community to grow up into. Without them there would be no one fighting for our kids human rights day in and day out from a place of true understanding of what their needs are actually going to be when they get to adulthood. 

So I’m asking you, as someone who really knows how it feels to be on the receiving end of that criticism from disability advocates, please listen. No one is trying to silence you. You are being asked to listen and learn, and to do better, yes -but no one is trying to take your voice away from you. You are being offered an opportunity to learn how to use your voice in a way that helps your child project their own voice, for their own good. I am sure you can see the benefit of that. I have learned first hand the benefits, and I promise you, it is worth it. 


10 thoughts on “Why is it so important for parents to listen to disabled advocates?

  1. Thank you so much for this post. You have managed to capture everything I have been thinking but have not been able to put into words. There is so much that we can learn when we sit with our uncomfortable feelings and truly listen to the message. I have grown a great deal as a parent and a writer (and expect this to continue) through reading and considering the important and candid viewpoints that are being shared by autistic writers. I’m looking forward to following your blog.

  2. As a parent of an autistic child, I am often confused by what advocates are saying. It seems that no matter what I and any one working with the disabled do, it is wrong, insensitive, ableism. It seems nothing we do will satisfy them, so I am starting to feel really impatient and unsympathetic. I do the best I can, and if I make mistakes, I pray my son will understand and forgive me .

  3. I’m a parent blogger who has always tried to put my children’s views and needs first but have possibly unwittingly hurt others by my words. I’m keen to learn more and to better balance my need to process my thoughts and feelings as a parent of special needs’ kids with the need for their own stories and voices to be heard and not misrepresented. This will always be a topic that will divide people, but I hope to learn more from others in the community, like yourself. In the end I just want the best for my kids and know that I need to listen to adults on the spectrum to better help them. Thanks for your thoughts on this issue Michelle.

Leave a Reply

Your email address will not be published. Required fields are marked *