Over the year I’ve been actively following, listening to, and engaging with as many disability self advocates as I can. I’m aware of my abled position of privilege as an ally, and I’m trying to use the right terminology, and pass the mic, and generally just nott fuck it up.
It’s not always easy. I’ve recently realised that Special Needs isn’t really an appropriate term for many self advocates. They see it as othering and euphemistic, and I can understand that. They see it as something parents of disabled children use as a way to make themselves feel better, and I can see that. Maybe I did. So I’ve been changing my language. Referring to special needs as disability and complex medical needs instead where I can.
One thing I am hyper aware of is the role I as a parent am taking, speaking for Eva and other children with disabilities. There are big opinions out there on this and many that I completely agree with. I think parents have a place, but that that place shouldn’t be more important than the voice of disability activists themselves. I think parent’s stories are important, but so is our children’s privacy. I can see the problem Actually Autistic advocates have with parents who share footage of their child melting down, or sharing intimate personal details about their toilet training. I agree with those self advocates that a parent’s voice shouldn’t replace that of the advocate themselves, as it often does.
But I don’t agree that all of the above means parents shouldn’t share their stories. When I started reading about disability advocates disliking parents sharing their stories it got me thinking, is what I’m doing in the podcast exploitative? Am I doing harm when I talk to people about the grief they went through with their child’s diagnosis? Am I harming the children in these families just so the parents can share?
I struggled with this idea, so I tried to think about what it is I am trying to accomplish. This isn’t about money. The podcast costs me money to make and I have not monetised it in anyway. If I did, the money would go towards running costs, not profit. It’s not about fame. My target audience is niche and always will be. It’s not about painting a picture of gloom and reinforcing people’s ideas about disability. My podcast and writing is always about being honest, whether that’s good or bad, being vulnerable, being open.
So what am I trying to do?
And I realised it’s simple. I am trying to help parents to get through that grief process to the other side. That grief process is almost universal. And some people might tell you that focusing on it is detrimental, but I don’t think that’s true. Ignoring that it exists doesn’t get rid of it, it just sends it underground where people won’t talk about it. It means people live in that time longer. They suffer there, instead of moving forward.
That grief process exists because of ableism. Systemic ableism and personal, entrenched ableism. That’s the world we live in. Not talking about the grief, insisting that those parents cope and keep their chin up from day one ignores all the systemic problems that cause them to feel that grief in the first place. It doesn’t fix anything, it just makes people suffer in silence.
What I am aiming to do is acknowledge that grief. Give it a voice. Give it space. And then demonstrate that so many people, from different backgrounds and with children with all kinds of different disabilities and medical needs, dealt with that grief and got through it. I want a parent listening to feel like they are holding someone’s hand through the process of their grief. I want to speed it up, I don’t want to ignore it or dismiss it, I want the person to feel it and move through it. Of course, we all know grief isn’t linear. It’s not black and white, and that grief may rear its head again, but that first month or year or three years is undoubtedly the hardest, and I want to help parents to see the other end of that first period grief in the form of other parents’ journeys, and find their own way through their own.
I understand that calling it grief may be painful. That a grown adult with disabilities may find it painful that their parent grieved at all. That’s not lost on me. But not talking about it doesn’t mean it didn’t happen. It just hides it, makes it a dark secret. My hope is that by talking about it, sharing stories, connecting and creating communities, that grief is lessened and passed through. Because for me, the alternative isn’t that we stop talking about grief, and so then it stops existing. The alternative is that if we don’t deal with this grief, and address the systemic issues of ableism that cause us to feel the grief, we may be caught in that grief for much longer than necessary. We may find it hard to find our way out, because we are being told that how we feel is not allowed, but then no one is working to fix the problems that cause us to grieve either.
That grief exists because we know as parents that the world isn’t built for our children. That the disabilities they have mean that the world will close its doors to our children. No one wants that for their child. And so we grieve. The way for that grief to go away is not to ignore it and shame the people who feel it, but to change the system that creates it.
In a perfect world, this grief wouldn’t exist. My podcast wouldn’t need to exist, because having a child with disability wouldn’t be seen as unusual. In a perfect world, having a baby like Eva would not carry with it the thought that you’d never work again, or your marriage would split up through stress, or you’d have to fight to get your child education. In a perfect world we wouldn’t judge a person’s worth on their ability to be productive and pay taxes, and everyone would be valued for their unique and complex lives.
But, and you know what I’m going to say next, we don’t live in that world. And while we don’t, having a child like Eva involves a grieving process. I want to make that process as smooth and painless as it can be. And that’s why I share these stories.
And every week or so, I realise that it’s working. I get an email like this one, and I know that I’m doing the right thing.
I too have a little 6 month old baby girl with CHARGE syndrome. She is currently living in a subacute hospital and still has not been home due to her health issues. As you know, it’s a tough freaking road. Listening to your podcasts and your story has completely changed the way I see my baby and my outlook on what it means to have a special needs kid. I can completely relate to all of the feelings that you described in your episode and have probably listened to it once a week since I stumbled upon your site. I now feel excited and maybe have even started to feel lucky that I get to learn and grow from this baby. I know that no matter how much she does or doesn’t do, she’s enriching and teaching me about life. It feels good. It feels so much better than before. So I guess I just wanted to say thanks.
I don’t know what’s going to happen, but I really hope our story is a long one and I’ll look back and reflect on this time as the really hard stuff. Your podcasts seriously get me through the day and give me so much hope. Thanks for your creativity and honesty in putting these out there. I keep referring friends and family to them. They are incredible.
Or this one:
I came across your blog last week and haven’t been able to stop reading it since. I just wanted to write to tell you it has brought me so much comfort. My little girl was diagnosed with Prader-Willi syndrome 5 weeks ago and she is now 8 weeks old. So much of what you wrote about how you were feeling when Eva was born is exactly how I am feeling now.
We too had a day of blissful happiness when I looked at my completed family with the 5 children I always wanted and so happy that Mabel was a girl, as I was hoping that she would be. Before our world as we knew it became what it is today.
I have had some pretty dark thoughts these past few weeks! I know that I will learn to accept this challenge however at the moment I don’t want to. I want my perfect life back (well compared to now of course it was far from perfect!). A friend of mine also wanted 5 children and after her fourth we were talking about whether she would go back again and she said “no I would be doing it for selfish reasons if I did”. I can’t get this conversation out of my head. At the time I agreed that 4 children was enough for me too but something in me wanted that 5th one. Now I am so annoyed that I was selfish and now I am paying for that decision. Thank you for helping to see that these are totally valid thoughts (albeit a little irrational ) are normal. I am looking forward to hearing the other families stories on your podcast.
Or this one:
I just wanted to say thank you for your blog and podcast, and for being so open about your journey with Eva. I discovered your podcast a couple of weeks after my daughter was diagnosed with Joubert Syndrome – 1 in 100,000 condition affecting the cerebellum, with effects on development, cognition, motor skills, vision and kidney and liver function. A common feature of Joubert’s is breathing difficulties – with multiple apnoeas possible. As an emergency medicine specialist I have the skills to resuscitate a child, and had a huge internal conflict when she was diagnosed – if I found her ‘blue’ in her cot, would I try to resuscitate her? I didn’t want her to go through a lifetime of tests, possible dialysis or kidney transplantation, and everything else that Jouberts possibly could cause. I felt so guilty for even having these thoughts about whether I would attempt resuscitation or not, and doubted myself as a mother. Your podcast made me realise that all these conflicting feelings can be normal.
And this one:
I just really wanted to reach out and say HI . Your voice, has so far been the soundtrack to my beginning this journey. Your journey is humbling and inspiring, and your thoughts and the stories you share with the other families has kept me grounded when at times I’ve felt like a balloon about to be gust away on a ragged autumn afternoon. you know.. those angry unpredictable gusts that tug and lurch . The podcasts return me to my world, and the balloon can float again, maybe i don’t know more accepting of the gusts, so things seem gentler, grounded and less out of control.
Thank you to every single listener who emails me like this. THIS is why I do it. Not to exploit, or create inspiration porn, or to focus on the negatives, but to support, and create a way through, create normalcy, and create a way to get to the other side.
Because once you get to the other side, you only wish you could have got their sooner.