26/07/2016 5:38 AM AEST | Updated 26/07/2016 5:39 AM AEST

I'm Not Putting Popularity Over My Daughter's Privacy

Did I give up my voice when I had a special needs daughter?

"What was the reason I shared my journey with Eva? Had I sacrificed my daughter's privacy for my own ego?"
Sally Anscombe
"What was the reason I shared my journey with Eva? Had I sacrificed my daughter's privacy for my own ego?"

For children born in the 21st century, their entire life is lived online, thanks to their proud parents. We share everything. Birth photos, baby photos. Every milestone is documented for the world to see.

The special needs world is no different. We celebrate every milestone, however long we have to wait. Some of us also share the struggles.

There has been a movement within the disability advocacy space where the privacy of our children has become the most important thing and we have been told to stop talking, stop sharing. We are told that our child's disability is not about us, not our story to tell, and if we share our journey with the world we are not only putting our own popularity above their privacy, but we are not doing the job we are meant to be doing... parenting.

This new digital era of sharing is unprecedented. We are making up the rules as we go along. It's hardly surprising then, that sometimes we get it wrong.

The disability advocates say if we have information to share with other parents, we should do it in private. We should not speak publicly about our struggles because they are not our struggles to publicise.

My first reaction when I saw these ideas was to get defensive. My daughter is gone -- she died at 10 months old -- and the thought that I have somehow put my own popularity before her dignity makes my stomach lurch. I rush to defend myself.

But when my hands unfurled and my jaw relaxed, I started to question my own motives. What was the reason I shared my journey with Eva? Had I sacrificed my daughter's privacy for my own ego? Had I betrayed my daughter for a few followers on Wordpress and an extra like on Facebook?

I think the advocates are right that this is an issue worth discussing, dissecting, investigating. 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 only 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.

But I don't think it follows, either logically, emotionally or ethically, that because I am not the one with a disability I cannot or should not share my experience of being the mother of a daughter who lived with and died from her condition.

There has to be some middle ground there. I have never claimed that I know what it is like to live with special needs or a disability. Never have I said I was speaking for the special needs community. At most, I was speaking for myself. Did I give up my voice when I had a special needs daughter?

Special needs parents are not just mums and dads for their children. We are advocates who speak for our children until they can do so for themselves, which might be never. We must speak, shout, yell and sob to get their child what they need in the world, so it's a difficult logic to follow that once they have got those needs met or at least addressed, we must not share those struggles, we must not speak about their own needs and wants.

It's not okay to silence a group of people such as those in the disabled and special needs community or to speak for them and take away their voices. But likewise, it's not okay to silence the carers of those with special needs, who have their own challenges to share.

Maybe they're right. Maybe I have put Eva's privacy second, along with my own. 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 by sharing our story, and sacrificing our privacy, we might make it easier for another parent going through this. We might show another parent just how low you can feel before realising this life is more beautiful than you ever imagined it would be. We might shed some light on this life as a special needs parent.

While it's impossible to know what it's like to be Eva and live with those disabilities, being close to her and seeing her beauty and humanity and personality means it's not such a remote prospect.