Privacy vs popularity – A response

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.





10 thoughts on “Privacy vs popularity – A response

  1. Jennifer Philp

    You are so right in that this is a puzzle. There’s no simple solution. I think writing with an open heart while being mindful of privacy issues are equally important. It’s hard. Also, loved this part:

    “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?”

    Yes. This. I am so sick of the double standard. The typical ‘mommy blogger’ is rarely (if ever) questioned on privacy issues and I think this is a conversation that needs to start happening.

  2. Tina McGrevy

    Thank you for articulating my thoughts. There is clearly a double standard when it comes to blogging with/without special needs.

  3. Amy Sequenzia

    Tessa, I don’t have a lot of spoons now but someone directed me here and I just want to clarify something you and other parents have misunderstood.

    The parts you quoted from my post mean: you (general you) can tell your story as a parent of a disabled child, but if you talk about how “hard”, “what a struggle” things are, or if you share very private information, I would hope you keep such discussions in more private groups because things online can get messed up. When I say that your child’s disability is not about you, it means that what you choose to tell might not be the same that your child would choose to tell themselves, and parents should be very careful with oversharing.

    If you tell the story of your child hoping to help other parents, I would hope that what you say is not something that can make your child ashamed, confused, angry or have a negative impact in their life. If something you want to say is very private, making it very public is not helpful to your child, and that’s why I say that the first job of a parent is parenting. Some things belong in private conversations, even if they are online.

    Some parents have told me that their children’s disabilities are “so hard”, they feel like sharing is helpful. Maybe sharing the difficult moments can be helpful to get possible ways of dealing with them but if they are at the cost of a child’s dignity, then it is a no. Private groups exist for this purpose.

    I know many parents who tell their children’s stories and are very respectful. Those stories are helpful.

    You don’t have to agree with what I say but I like that you are questioning what and how you write about your child

    1. Tessa Prebble Post author

      Amy, thanks for the clarification. I think it does feel like a difficult line to navigate. I guess I am in a slightly different situation than most as my daughter died at 10 months old. She is not going to grow up and read this blog.
      But I do see merit in this discussion and I definitely think you have a valid point. I think it’s important once we get past that initial defensive shut down impulse, to talk about this and nut it out and find these lines together. I don’t know that there is a perfect answer that both sides of this equation will be happy with, but the conversation is still important and worth having.

  4. Cheryl

    I love your blog, it is honest and real. Funnily enough I have never thought of you as a “mommy blogger” but rather as someone sharing and voicing your experiences for the benefit of others. You have never shied away from the hard bits about your and Eva’s journey even when that has included admitting your mistakes. I love that you share a little bit of Eva as part of your blog and see it as no different than me posting cute pictures of SJ online or emailing them to the rellies. If you are guilty of breaching your daughter’s privacy then so is every parent of a cute baby/toddler (including me).

  5. Maria Grace

    I blog about my children and acknowledge that sometimes I will screw up: offend someone, mis-represent someone, etc. But I also acknowledge that blogging is something I do for MYSELF, and I allow myself the space to screw up because somewhere in there is a balance between doing a good job by my children and doing a good job by me.

    And the fact is, I have found immense help in blogging. When I read other people’s blogs I get insight into what they do and how they do and how they describe it, and I learn from it. Same for my own blog: I learn from other people’s responses to my blog, and how many times have other people given me links to things that I found awesome? How many times has someone else written to me to say that, thank you, Maria, your blog has helped me!

    I have enjoyed your blog a lot. I have learned a lot from you. And though I can see the need for balance between privacy and the freedom to express oneself, I also know that looking something up in forums or through actual physical networks of parents or websites with log-ons, takes time and effort.

    Reading something on a blog is easy. Sometimes it’s a start to get involved in something deeper, so what starts as reading of someone’s blog may end up being involved in a local charity, whatever.

    So I agree, protecting children’s privacy is important, but so is availability of information to people who may benefit from it, a parent’s freedom to express themselves and somewhere there’s a balance between it all. It will never suit everyone – there will always be someone who thinks that too much has been shared, or too little – but either way there is no hard rule of how things should be done.

    Thank you for writing. I keep on reading.

  6. catie

    I think I completely disagree with Amy on this subject. Parents have been talking about their children with other parents since the beginning of time. What has changed is how we talk to each other about them. Instead of in person or on the phone it’s through Facebook and blogs. In so many ways your child’s story becomes part of your own. How could it not? Even with typical children your lives become so entwined it’s hard to tell your story without including theirs. It is difficult to ask for support and advice without telling the whole story.
    It doesn’t mean your children don’t own their stories, they do and when the time is right they can and should tell it from their perspective. But I think it’s unfair to ask parents to leave large pieces of their own stories out because it *might* one day make their child uncomfortable.

  7. me+hub+3

    I think you have done a wonderful thing with sharing your life when you were pregnant, then with Eva and now after Eva. You have been so honest with your posts and I think you have helped more people than you know.

    No Eva could not tell you if she wanted to share her experience but as her mother you have that choice about how much to share. In all your posts I felt it was more about you. Yes, you shared Eva’s progress and how proud you were of her and her struggles. But I have always felt It was more about you and your feelings, how you were struggling and then the joy that you found celebrating Eva’s progress and hurdles.

    As I have said I’m sure that you have helped more families than you know. You have done a wonderful brave thing sharing your experience and being so honest. I know at times it has been hard and you have felt judged like many other families out there. So by sharing you are showing that they are not alone. It has been a beautiful honest journey to follow.

  8. AnonoMun

    This is an issue I think a lot about.

    I had read Amy’s post some time ago and it resonated with me.

    We live in a unique age. Never before have we been able to record our children’s lives in such detail, so widely and so quickly and most importantly never ever in history have we been able to perform searches on this information. Every single key stroke is searchable. Images are searchable (I still cannot understand how?!?!)

    You might read this and think what you post about your child will quickly fall out of circulation. “I wrote about their their bowel issues years ago”. “I haven’t mentioned their genetic diagnosis online in ten years”

    It is still there. It is sitting on a server. Sleeping in a data centre thousands a of km away. Waiting for someone to search on your child’s surname. Their year of birth. Their country. Their town. The name or their school.

    Your child applies for a job. Cue HR running a simple web scrap. Within seconds they know your name (your child’s parent). They add this to their search criteria. Within minutes they pull down every post that references your child. They pull down key medical terms.

    It happens today. I work for a company that employs a team of people to manage our social media interactions. When someone posts someone inflammatory they do a quick scrap to see who they are dealing with.

    When someone applies for a job our hr team do a quick scrap. Hmmm this guy posted a pic of himself holding a gun on old public school forum in 2004. He doesn’t get the job. It happens. I’ve sat in the meetings. This is not a scary future world, it is now. My jaw had dropped. I could not believe the company I worked for did this.

    So what does this mean for our small children? How sophisticated will this technology be when they are looking for work or for health insurance in decades to come?

    What does it mean for them when they meet a girl or boy they like?

    Will we be paying people in the future to make all of this public info disappear?

    I have to assume my son’s future self does not consent. Bc the alternative is a very angry and confused adult version of my son

    The irony is that I read public blogs about SN kids. I would be lost without people sharing their experiences. The honesty and openness of other mothers have been the lighthouses keeping me from being smashed against the rocks.

    I read them and am grateful. But I don’t share publicly. I share in closed or secret groups. And even in these I don’t use his name.

    And I am so grateful to Amy for being the voice of my son before he is able to articulate his feelings himself. And who knows, he might be ok with sharing. But it will be his choice, on his timeline, when I know he understands the consequences.


  9. Danae

    If you hadn’t shared your story, my life literally would not have been the same. Maybe that is selfish on my part as a reader/Prebble fan…but to me your story is a beautiful testament of love and there is no benefit in staying silent and keeping your or Eva’s light from the world. I’m so thankful that you write and help other mothers tell their stories. You have given me the headspace to feel less alone, less alien on this journey. I think the privacy of the child is important too, and with medical issues often a delicate balance of tact with raw reality, but the truth is we don’t live in isolation. We are all part of something bigger than ourselves, and your openness is an act of trusting in humanity, trusting that someone out there will understand, and trusting that this is just a part of beautiful, messy, hard, lovely life.

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