Parents blogging about their children with disabilities: it is a fine line between awareness raising and shaming.

Last week I took part in a fantastic Twitter chat around the power of disability stories. The chat was a part of the National Museum of American History, as a celebration of the American Disability Act. Participants were from all corners of the globe – such rich, inclusive and diverse conversation! Questions were asked about how we’d like to see disability represented in mainstream and social media. I said I’d like to see fewer stories about people with disabilities told by others. I want to see fewer stories of disability as a burden. I also said I want to see less of parents showing their child’s disability on social media until their child can give permission.

I felt pretty brazen tweeting those statements. There is often a divide between people with disabilities and parents, and also general bloggers and parent bloggers. And often I am scared to raise the issue because I feel like parents disregard the experience of disabled adults. Many of my writerly friends with disabilities are scared too. Deep breath. I don't want to create a further divide.

I read a post about how a child's disability makes her embarrassed (but it's ok, she embarrasses him too! And don’t all children embarrass their parents at some stage? When I was 12, I said the C-word at a dinner party!).And one blogger wrote a list post about why parents of disabled children are acing motherhood (compared to ‘millennial moms’). Motherhood is not a competition. To the reader, parents are heroes, and children with disabilities are burdens or inspirations.

Blog posts about children with disabilities being burdens or inspirations, or full of detailed information about the child’s condition, make me uncomfortable. I say this as someone's (adult) child with a disability. I would be mortified if my parents publicly overshared about my condition as a child or an adult. I am glad I can make the informed educated choice to tell my story my way. To read about how a child’s disability is a burden for their parents hurts so much – especially when I read about a child with the same condition as me. Was I a burden on my parents too?

These very personal stories about children with disabilities and how parents feel about them are shared for many people to read and judge. The post might go viral. What impact will that have on a child – who often cannot give consent or understand the impact of their story being shared so widely? Most often, comments are positive and supportive, but they can be brutal.

Are the children aware of the content and reach of the blog post? How would they feel of they read it? How would their teachers and friends feel? Has the child given their parent permission to write about them? Do they want medical procedures and melt-downs shared with strangers? What if the blogger's child has more fans than real life friends - will this make them conceited and entitled? I really hope they aren’t hurt by their parents’ words. The internet is forever. Even when a site is deleted.

There are parts of my condition that are so private: how my face looks first thing in the morning, the piles of skin on my floor and in the bed, and the smell of my legs when they’re severely infected. I don't let others see this side of my condition, because I guess it's like letting people see me go to the toilet. I want my privacy (and I am so thankful for my parents respecting this as I grew up). I hope to always put the best side of me online. I defended a toddler’s right to privacy online and was lambasted by the blogger’s devoted fan. It felt like a slap in the face because my lived experience was so invalid to the blogger and her fan.

An adult with a disability may choose not to disclose their condition - the whole condition or certain intricacies of it. But sometimes children's identities are made public before they've given consent. When a disabled child's parent has already blogged about their disability or shared photos and stories on social media, their condition has already been disclosed. And so this impacts on their friendships, future employers, relationships and esteem. A friend who is a mum and blogs about fitness told me she’s mentioned funny anecdotes about her children on her blog, but never named them. "I didn’t want my kids’ friends googling my kids’ names and finding embarrassing stuff about them on my blog", she said.

Something that's stuck with me for a long time is a post by a child psychologist. To paraphrase, James' mum asked her Facebook friends how to treat James' bed wetting - she did it with good intent, seeking advice and thinking others might feel less alone by her sharing her story. The next day, James' school friends laugh and tease him because they heard he's wet the bed. All the school mums were talking about James wetting the bed, and this filtered to their kids.

There’s been a recent influx of well-intentioned yet saccharine personal and mega-blogs devoted to disability stories told by parents. These sites ultimately provide support to parents and carers and medical professionals, rather than people with disabilities. writers are new parents - new to the experience of disability - conquering life one inspirational meme at a time. And most articles by parents outshine the articles by people with disabilities. Intent on educating at all times, parents have become our voice.

American disability activist Emily Ladau wrote a piece for Think Inclusive discussing who should speak for the disability community. She raises the issue of parents and carers speaking for their child, "Support networks are usually well intentioned…but in many cases, they take the power out of the hands of people who know themselves and their needs best: people who are actually disabled." Emily continues: "A lifetime of support is essential, but only when self-advocates are given the change to be the number one advocates for ourselves."

I wonder about the long term impact of parents sharing stories about disabilities online. Parent blogging is relatively new, but disabled children being thrust into the media spotlight is not. Quentin Kenihan, who has osteogenesis imperfecta, was made a child star age 7, when he was interviewed by Mike Willesee. His story was covered in the media for years. During that Twitter chat, Quentin told me he wishes he could have given consent for his story to be told 33 years ago. He discussed the issue of parents telling their child’s stories: "It was a well intentioned act that can go very wrong like it did for me until I took control of my choices." As an adult, Quentin has chosen the way he wants to be represented – through performances and media appearances on his terms.

I understand parenting children with disabilities is hard and isolating, and that parents need an outlet. Parents are wonderful (and sometimes the only) advocates for their children. And so many others will relate to their stories - so that is positive. (I know firsthand just how cathartic and supportive blogging about disability can be.) But is airing such personal, complex details and feelings about a child’s disability online the right thing to do?

It is a fine line between awareness raising and shaming.

This was originally published on Daily Life.

Postscript:

I read a tweet the day I sent this article to my editor: "@MelissaHawks: I hope you writers out there stop playing it safe. I hope you write the things you know you're supposed to write even if they terrify you."

I wrote about an issue I feel very strongly about - parents who overshare details about their child's disability online. Parents are great advocates but sometimes they can advocate to the detriment of their child's privacy and dignity.

I've received so much great feedback - especially from parents of disabled children. I've made them consider their child's privacy and identity. That's all I can hope for through my writing. And my editor said I was "killing it". (It's been shared over 7000 times!) Thank you.

But I've also received some dissenting views, and that's ok. I want to expand on my article here.

Here are some actual examples of oversharing I've seen on blogs and social media recently: a parent posting naked photos of her little one in a Facebook group (only last night), a parent writing that they felt robbed when their daughter was born with a disability, complaints about the way a child's disability inconveniences the parents' life, a photo of a bleeding, naked child on Facebook - because their mother was desperate for answers, stories of autism melt-downs and parents making money from their child's story through running ads and sponsored posts.

I've been blogging (and a reader of blogs) since 2001 and so have seen many questionable practices. I really do think the way some - not all - parents share stories of their children (with and without disabilities) online will impact the way they grow up. And my photo has been misused and I've seen others' (including children's) who have been misused too.

But I've also seen MANY more great examples of story telling and connection online! I don't believe sharing happy photos or stories about a child's milestones is over sharing, and I encourage and value community building for support and connections. A good measure of what to post about your child is to think about whether you'd like that written about you online, or would you like others to see you in a vulnerable way, or is this something that should be discussed in the privacy of a doctor's room?

If you are familiar with my writing, you'll know how passionate I am about sharing stories via social media. It is so empowering and reassuring for many - and makes people feel less alone. By all means, share stories, but consider the impact.

(Picture: Delicate by Coley Christine from Unsplash)