My children are autistic and ADHD, and for years I have watched the system grind them into shapes it found more convenient — watched accommodation requests disappear into bureaucratic silence, watched my daughter’s distress reframed as behaviour, watched my son’s needs met not be met and his slow retreat. My daughter’s barely attended school this year and my son has been home in his room for a year.
So when the benefit changes landed, I felt it viscerally, like the ground came out from under me. The years of reducing my salary to deal with the fallout from school exclusion, the long nights writing advocacy emails, the uncomfortable rooms where I made complaints and tried to get people to respect my children’s basic human rights — all of it arrived at once.
Because it always starts there with advocacy. How will I pay my bills. Will my child still receive therapy. Will I have to stop receiving family therapy myself.
I start from there, and there is nothing wrong with that.
As I began to understand the changes, my thinking moved outward — to families with less money than mine, to children more complex but not complex enough to meet the threshold, to younger children now accessing more funding than my own. Mapping the boundaries. Asking which group I was in.
And then the outcry began on social media. Sadness, fear, stories, misinformation, and a lot of anger. Pure hatred, in some corners.
Into that came the voices of families finally receiving support for their children. I cried tears of joy. And I did a lot of soul searching, because understanding what the changes meant for those families made me feel something I can only describe as embarrassed — a sudden self-consciousness about my own fear. Like when you won’t eat your dinner and someone says there are children starving, except kind of legit. The tension is real.
There are higher needs children that deserve prioritisation, and I believe that lifting the most marginalised makes the whole community stronger. And yet I could also see the social policing mechanism threaded through that logic. Accepting a good deal for the most disabled can function as mechanism to silence parents whose children are also at risk.
I initially avoided the Discord group because I predicted what it would contain. I joined anyway, because I have real feelings and wanted to know what was going on. To share my ideas about how best to advocate.
What I found was the eviscerating.
I watched people turn on disability justice leaders — people who have spent careers and decades fighting for the very community now shouting them down — with a ferocity that had almost nothing to do with policy. Something uglier. A hunger for revenge.
And here is what I need you to understand, if you are one of those women: you are making it impossible for the rest of us to stand near you.
Cringe is not a trivial thing politically. When your rhetoric makes principled advocates recoil, when your presence becomes the reason thoughtful people quietly withdraw from petitions and go silent in comment threads, you are not fighting for disabled children.
You are performing an anger the government finds convenient!
A movement occupied with managing your contempt has considerably less capacity to challenge the people actually making the decisions. The suppression requires no orchestration. You are doing the quieting work yourself.
Let me be clear about what I am not saying. I am not saying parents should temper their advocacy or subordinate their children’s needs to some abstract collective principle. The policing that tells parents of disabled children to go quiet, to be grateful, to stop pushing — that is its own harm, and I refuse it. My children’s needs are real and I will pursue every complaint, every avenue, every documentation strategy available to me for as long as it takes. That is not negotiable.
What I am saying is that fierceness and hatred are not the same thing. The parents who fought for years so that other disabled people could finally access benefits — they were fierce, they were relentless, and their ferocity was oriented by love, aimed at systems and structures and political choices, not at the people doing the hardest work of fighting those same systems.
We do not need perfect alignment to build something. We need 60% of the same goals and enough discipline to protect the alliance. Movements that devour people who share most of their values do not win. They exhaust themselves, they shrink, and the people making the decisions wait it out.
That distinction is everything.
I will speak for my children loudly and without apology. I will also speak as someone who believes that the child with the most complex needs, the family with the fewest resources, the person the system has most thoroughly abandoned — they deserve to be centred, even when that requires me to hold my own grief alongside someone else’s long-denied gain.
What unites us, or should unite us, is love — for our children, for all the children, for the ones who just gained something they desperately needed and for the ones whose support is now uncertain. We share that, or we share nothing.
And if what you are bringing to this space is not love for children — all the children — then I want to ask you plainly: what exactly are you here for?
Because I think you might be doing someone else’s work. And I think they are counting on you not to notice.