I started writing about Eva before she was born. Back then I referred to her as “the Peanut”. I kept calling her that for a while after she was born in a slightly misguided effort to give her privacy. The reality was that my blog was not anonymous, so by giving up my privacy I had already identified her by proxy.
I was accused by a commenter of de-humanizing Eva by not calling her by her real name, and so I stopped referring to her as the “Peanut” and started to talk about Eva. I was trying to do right by my daughter. To give her a name, instead of a moniker. To acknowledge her humanity, her identity.
Sometimes it feels like there is no right thing to do. Recently, I came across an article on Ollibean, a “dynamic community of parents, families and advocates in the disabilities community working together for a more socially just, accessible and inclusive world.” The article was by Amy Sequenzia, a non-speaking Autistic, multiply disabled activist and writer. It was entitled Privacy versus Popularity and it kicked off with this statement.
“Your child’s disability is not about you. Your child’s disability is not your story to tell. If you do it in public at your child’s expense, you are not doing your job, which is parenting.”
Amy goes on to conclude by saying,
“If you want to help other families with tips on how to help their children, do it in private.
If you do it in public at your child’s expense, you are not doing your job, which is parenting.
You are doing it for popularity.”
My first reaction was to get defensive. I roiled at the word popularity and felt myself grit my teeth as I reassured myself I wasn’t doing it for that reason. I was a good mother. I loved my daughter. I wasn’t a narcissist.
When my hands unfurled and my jaw relaxed, I read the piece again. I saw the premise, “privacy of disabled children versus popularity of parents of disabled children” and I felt a red tide of shame wave up my neck and over my face. What if that was the reason I shared my journey with Eva? Had I sacrificed my daughter’s privacy for my own ego? Was I the parent Amy was writing about? Had I betrayed my daughter for a few followers on WordPress and an extra like on Facebook?
When that shame subsided I felt angry, but engaged. I wanted to solve this puzzle. I followed my thoughts as they twisted and turned around this idea that by telling my story I am stealing Eva’s ability to tell hers. That by sharing our story I am putting my popularity in front of her privacy.
I think Amy was right that this is an issue worth discussing. I think as advocates and parents we do need to be careful about what we share and how we share it. I do think that these lives we write about should give us pause as our fingers hover over the keyboard. These are our stories, but they are not just our stories, and that is an important distinction. We need to think about the other voices in these stories and how they are included and valued and respected. We need to think about how they would feel reading our writing. Would they disapprove? Would they be embarrassed? Is that picture crossing a line into TMI territory?
But I don’t think it follows, either logically or emotionally or ethically, that because I am not the one with CHARGE Syndrome, I cannot share my experience of being the mother of a daughter who lived and died from her condition.
There has to be some middle ground there. I have never claimed that I knew what it was like to live with special needs or a disability. Never have I once said I was speaking for the special needs community. At most I was speaking for myself as the mother to someone with special needs, and for other parents who may have gone through the gamut of emotion that I have. Even within that niche world of bloggers, my views and perspectives are very different from my peers and I have never pretended to know all the answers or speak for us all.
I have never claimed to speak for more than anyone but myself. I have never said I speak for Eva, or instead of Eva, although I will say that as the mother of a baby that died at 10 months old, I dare other people in my situation not to feel the need to speak on their behalf. That’s what special needs parents do. They advocate for the people they love who cannot do that for themselves. As parents of any kind, special or neuro-typical, we speak up for our children’s needs and rights. We don’t speak as them, but for them, until they can speak for themselves.
It’s a difficult trajectory to follow when the special needs parent must speak, shout, yell, sob to get their child what they need in the medical world, educational world, therapy world, and social world, but then once they have got those needs met or at least addressed, they must not then share those struggles; they must not speak about their own needs and wants. They must keep quiet or risk being told they are not parenting as they should be; their focus is split between themselves and their child. Shame on them.
It’s not ok to silence a group of people like those in the disabled and special needs community or to speak for them and take away their voice. I would be one of the first to agree with that. But likewise, it’s not ok to silence the carers of those with special needs who have their own challenges and tribulations to share. It’s not ok to say their stories are not to be told or shared or celebrated.
Amy points to some of the excuses that special needs parents make in writing about their children online. She says we claim to do it because other parents thank us for telling our stories. She says this makes us attention seekers and that we have shifted the focus from where it should be, which is on the child, to being all about our own egos.
Maybe she’s right. Maybe at the end of a day which has been about everyone aside from herself, a special needs mother needs to feel some validation and support from outside the four walls of her living room. Maybe she needs to get a pat on the back and for someone to tell her she’s doing a good job, because the 10 hospital appointments she has done that week along with the sleepless nights because her child still sleeps terribly, have taken a toll on her. Are we really telling her she can’t share these experiences to feel less alone?
And if our motives are around reaching other parents, which I would say is a huge one for me, rather than directly advocating for our child through the blog, is that a bad thing? Is helping other parents come to terms with life altering diagnoses and grief really such a bad thing? Is the process of publicly acknowledging some of the brutal truths of parenting children with special needs, and allowing that world to be less of a mystery to each other, really something we want to ban? Surely they will be better parents, and their children better cared for, because of that connection?
Amy also talks about the need for anonymity in these blogs. On the one hand, I completely understand this. I could have kept calling Eva “the Peanut”. I could have used an alias and never identified myself. I chose not to because I wanted to front up to my story. My story involved exposing things about myself I am not proud of. It revealed nothing embarrasing about Eva or who she was, but instead I laid my own failings and weaknesses bare. I wanted to show that I was a real person, not an internet cypher. I wanted to show that while I had regrets and pain and grief, this was my life and I was proud of Eva. She was not someone to be hidden away, or embarrassed of. She deserved to have her name recognised. I felt like anonymity, while it maintained our privacy, kept her hidden away from the world in a way that didn’t feel right.
And maybe that wasn’t my decision to make. Eva afterall couldn’t give her consent to her images being shared, her story being told.
But then if we are going to shoot daggers at the special needs mothers who name their children and show photos online, shouldn’t we be pointing the gun at every parent who does this? Is there any reason that a special needs mother should get any more vitriol at her doorstep than a standard mommy blogger? And if there isn’t, are we really saying that these stories of parenthood and family and all the beauty and brutality that comes along with it are stories we can no longer share?
There’s a saying that goes that those who are close to writers have to be careful because what they say and do ends up surfacing in the writing of their loved one. This goes for our children, our parents, our siblings and are spouses. Love and relationships provide the greatest agony and ecstasy in anyone’s life, so it follows that we would immortalise those people and events in writing. It follows further than in a world where women are still the primary carers in most households around the world, that our writing is going to often feature these home-based narratives and truths. It’s just that now, the forum for this storytelling is online, and those words are forever.
Maybe Amy is right. Maybe I have put Eva’s privacy second, along with my own. Maybe I have made that privacy less important than other things. But I would argue that for myself, and for most special needs parents it’s not coming second to our popularity, it’s coming second to the idea that our stories matter and need to be heard. It’s coming second to the idea that by sharing our story, and sacrificing our privacy, I might make it easier for another parent going through this. I might show another parent just how low you can feel before realising this life is more beautiful than you ever imagined it would be. I might shed some light on this life as a special needs parent, so that while it still might be impossible to know what it’s like to be Eva and live with those disabilities, and no one can ever know that for sure, being close to her and seeing her beauty and humanity and personality is not such a remote prospect. I might help make the world, or at least the small community of readers of my blog, a little bit more accepting of children like Eva.
I don’t speak for Eva, I speak as a mother who wanted the world to acknowledge and accept my daughter. I speak as the mother who lost her daughter. I speak as a person who knows just how hard this can be, and wants to make sure my losses weren’t for nothing, that they can help someone else.