There’s a battle going on in the special needs community.
I first became aware of it when I followed a link a mother had posted on facebook to Lauren Swick’s article in the Washington Post. In the article, entitled Writing for the Mighty, for my son and with my son, she talks about the debate happening in this particular part of the community.
The Mighty is a sight whose motto is “Real People. Real Stories. We face disability, disease and mental illness together.” It’s a fairly new site and its articles range from contributions from parents of special needs kids, to people suffering from mental illness, to anyone with a story to tell that might shed light on what it’s like to live this life.
I myself have contributed a number of stories to The Mighty.
An article was published by a mother who had autism about her child who also had autism called “Meltdown Bingo”. I personally never read the piece as there was a strong backlash to it and The Mighty took it down.
Since that article there has been a divide within The Mighty community between “Mommy bloggers” – those people who are blogging about their experience as the parent to a special needs child, and those who have said as parents we don’t necessarily have the right to be telling these stories. Phrases like “inspiration porn”, “mommy martyrs” and “pity party writing” were thrown around within the community.
This group within the special needs community were angry, and referred back to a common idea within the community of “nothing about us without us”. They wanted their stories to be theirs, not the ownership of their parents, or whoever else deems it appropriate to talk about.
I have very very mixed feelings on this. On the one hand. YES! Of course. The special needs community, disabled community, mental health community, should have its own voice, it’s own speakers who speak from within it. Those stories should be theirs to share or keep private as they please.
I think it’s incredibly important to ensure that. Within that I don’t think all the voices will agree, but that’s ok. It’s important to have debate and discussion from within a community.
But, I also come from this as the mother to Eva, a baby who never got a chance to tell her story. A girl who may never have been able to, even if she had lived.
Just because she couldn’t tell her story, does it mean she didn’t have a story worth telling? I feel as if I tell that story for her . I have tried to tell it as honestly as I can, and sometimes that reflects badly on me, because I’ve shown my own progress in acknowledging who she was and coming to terms with the life we would live. If Eva were to have been able to read my writing when she grew up, she would have seen her mother struggled, a huge amount, but that love won out. It didn’t reflect badly on Eva, if anything it showed her that her mother was flawed, and lived in a society that made it hard to be the parent of a special kid, but I think I would have been happy with her reading what I felt and did in those times. I’ve not tried to keep it a secret.
I also come at this debate from a place where I couldn’t find the kind of story I’m writing as a parent of a special kid. I felt alone and isolated and I didn’t think I could do it. While of course, Eva’s story is her own, I also have a story here. Being a parent to a special needs kid is no joke. In those days, weeks and months of diagnosis, you have to come to terms with your life being completely different from how you expected or planned. And while I came very much to terms with Eva and loved her for all I was worth, I still knew her disabilities were going to provide challenges for both her and me.
That side of our lives is what daunted me when she was first diagnosed. We can emphasise the need for voices within the special needs community. And I agree that those voices should be the loudest. But if we silence the parents, we are making a difficult journey even more difficult. Some of these parents will be their child’s care giver for the rest of their lives. For every special kid who excels and can live independently and tell their story, there are many others who rely on their parents as an infant would, for their whole lives. Who tells that story if the parents don’t?
It’s one thing for an adult with special needs who can write and read and take part in the world in a way we think of as typical to be able to tell their story, but what about those kids who grow up but are not able to tell that story? Is there story not worth telling because they don’t have the means or the ability? As a parent to that child, adolescent, adult, shouldn’t we feel able to share their life with the world?
This community, like any community, is diverse. There are parents who are facing extreme challenges every day. Are we saying that because they themselves are not the one with special needs that they cannot have a voice in this? Are we saying that we all have to fit under one voice?
Are we telling those mothers that they must fight every day to be their child’s advocate in hospitals and education, but they aren’t allowed to share how that struggle feels to the wider world?
These stories we tell aren’t just “pity porn”, they help to let people with no experience in this world see what a day in our life looks like. As a parent of a special kid, we want our children to be accepted and loved as we love them. We want the world to be able to see them for who they are instead of their disability. Keeping quiet about our challenges doesn’t aid that cause. It hurts it. If we force special needs parents to stop talking about their experience we isolate them further by making their experience so unknown and alien to a typical family.
I agree that as parents we need to be aware of our children as people. They are not just an extension of us. This extends far beyond the special needs parenting world and into the simple mommy blog world. We are sharing our children’s lives. We need to be aware of what we say. We need to think this through. These are people with futures to live independent of us. We need to think of that life and what they would want shared.
But by the same respect, these parents are people too. Their story matters. Their experiences matter. And while they might not be the one dealing with the disability first hand, you can bet they have the scars to prove they have battled for that person. Those stories are worth sharing.
Until we live in a world where special needs parenting is not something that most typical parents see and say, “I couldn’t do what you are doing,” then we need to tell these stories. Because these parents are doing everyday what others think of as a nightmare toil, and those stories need to be told. To deny it’s hard does no one any good. It stops being hard, when society backs up these parents with the support they need. Until that day, there will be stories of challenges and success that need to be shared.