On the impact of normalizing grief.
CW: Ableism and transphobia
I recently got to participate and bear witness to an incredible FB thread about an organization who shared a marketing email with a parent testimonial that included how they were "hit with a wall of grief" when getting their autism diagnosis (and then leaning into the right kind of speech therapy turned that around for them).
A person shared how upset they were that this kind of language and sentiment would be included in a so-called-ND-affirming org's marketing material.
At first I was like "ya but that's how some parents' feel, so they are just sharing one person's experience". But the more I read this person's perspective (I believe they are disabled too?) the more I understood how wrong it was to do that.
95% of the commenters were disagreeing with the original poster - saying they too felt grief so it makes sense that was in the marketing material. Some even went so far as to say EVERY parent feels grief and they're lying if they claim otherwise. Some felt it was important to normalize this experience of feeling grief as a parent when you find out your kid is disabled.
I mean... first of all... if you've been on social media at all, or read any newspaper article, I promise you that feeling of grief is already very, very normalized. I see it everywhere, including from the ND-affirming therapists and parents I follow. In fact, I wrote a while back on how much I had been holding back my experience of not feeling grief because of how taboo that seemed to be. - (see link in comments cuz FB sucks).
But as I reflected more, I thought about the trajectory of dominant culture's handling having your kids come out as gay. Yes, there was probably a time not too long ago where it was really normalized to talk about the grief you felt as a parent to discover your kid was gay. All your dreams and hopes for them have been crushed, or something. But imagine now if the queer-affirming therapists and parents you follow on social media talked about how much grief they felt when they found out their kid was gay. It would be horrible! Imagine what that would do to young (and old!) queer folks reading that!
Imagine if PFLAG sent out marketing material, in 2023 (forget the election and Trump-country...), that centered the grief parents felt when their parents came out and how PFLAG helped them realize their kids could, in fact, also get married and have kids so it's all ok!
(This isn't to say that people can't have their feelings. All their complex emotions. I'm sure when someone goes to a PFLAG parent support group those feelings can be shared in a safe, facilitated space meant to center the parent-experience.)
Imagine, instead, we used our media platforms and influence to create a world where it was normalized to NOT feel grief when you found out your kid was disabled. Imagine if 95% of the msgs you scrolled by were like "I found out my kid was disabled and I was like, cool thanks doc! Now I know where to get supports that will center them, support them with their challenges, and affirm their identity! So glad you told me!"... and then yes, you can still join that support group to work through your own complex feelings in a private, parent-centric space.
Once I co-created a FB group for ND-affirming parents who live in NYC. One day, someone was posting something about their kid and therapies or whatever, and they said something along the lines of "but hoooo-eeeee I'm glad I don't have one of those HIGH SUPPORT kids because that would just be so awful." (not an exact quote).
I was livid. My body was hot. I was so upset. This person was talking about MY KID and saying how awful they would feel if they were a parent to MY KID. How hard it would be to be a parent to MY KID. I wrote out a couple of responses telling them how awful what they said was and how it made me feel. And then OTHER parents jumped in defending that person, defending the need to vent as a parent (apparently in this ND-affirming FB group because god knows there's no OTHER place for parents of autistic kids to vent....) and getting mad at me for being upset.
I msgd the admins to be like "WTF???? CAN WE SHUT THIS DOWN??" and they also defended that person as just saying things they feel.
What was really embedded in this defending was "well wouldn't we ALL feel awful if our kids had high support needs?"
What was embedded in this was "We are ND-affirming for the right kinds of neurodivergent kids, but it totally makes sense we wouldn't affirm those kinds of neurodivergent kids".
I immediately stepped down as an admin, learned to be incredibly distrustful of anyone who claims to be ND-affirming, and as far as I can tell nobody cared or was moved at all by my outrage.
(As an aside, I remember that when that group was created and there was a bit of drama, the other admins were adamant that I better be a neurodivergent person because only ND people should admin that group. And even in that moment I knew, but couldn't articulate, why it isn't sufficient to have "ND-affirming spaces" led by ND-people because unless they've done work on their own ableism and how to center others, it can be used as a pass to say and do whatever you want, including oppressing disabled people that you didn't know existed).
Imagine now, that this was a FB group for queer-affirming parents of queer kids. Imagine a parent said, when discussing some amazing groups for their gay kiddo, "but hooooo-eeeeee I'm glad I don't have a trans kid because THAT would just be so awful.". And that the other members and admins were like "yup that makes sense. Totally glad you shared your feelings."
Look I, and the person who started this convo, aren't saying people don't have a right to their complex feelings. Be it grief, fear, anger, whatever. But let's not have grief in the face of learning your kid is disabled be SO normalized that it is part of marketing material. Marketing material that disabled folks are going to read. Marketing material for ND-affirming orgs.
And I'm also saying let's go even a step further and let's get to the point where we stop having it be the DOMINANT narrative. Let's change culture by changing what the narratives are, because when we do that, we change what the feelings and response will be in the future.
Instead of grief, let's normalize:
Anger at the way doctors spoke to you about your disabled kid.
Frustration at how hard it is to sift through what is out there and find things that affirm your disabled kid.
The experience of realizing how deep your own internalized ableism and then the work that it takes to undo that slowly, over time, with mistakes (as Heather Lanier so beautifully did in her memoir Raising a Rare Girl)
Imagine what shifts could happen if that is what was normal.
