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 Sequenzia on Ollibean
By Amy Sequenzia
The title could also be:
Privacy of Disabled Children versus Popularity of Parents of Disabled Children.
Which one is more important?
The answer is clear to me.
As I wrote before, a child’s disability is not about the parents.
Neither is the disability something the child has done to the parents.
I know many parents who are writing about their children. Some do it right.
They write candidly, but anonymously, and/or
They don’t share private details about their children’s difficult moments, and/or
They ask their children for permission, before sharing their pictures.
These parents RESPECT their children.
Yet, some parents insist that there is nothing wrong with posting all the details of a child’s disability on the Internet – knowing that once posted, it will be there forever, and obviously knowing that children do grow up and will be able to see their life exposed online.
This second category of parents like to used some tired excuses:
. “My child does not have a voice, so I can and must speak for them” – to which I say: everyone has a voice and your job is to help your child use theirs. Meanwhile you need to stop talking publicly about your child’s disability and do some real parenting.
“You (disabled adults) are not like my (‘low-functioning’) child” – to which I remind them that a developmental disability has its own timeline. Many of us learned skills, and language, later than typically developing people. Don’t use this excuse to justify your need for attention. Your attitude only shows that you don’t believe in your child.
Then the attention seeker parents will say that they write “with honesty”, that they tell everything “the way it is”, even using the child’s real name, since they can’t “read or understand anything”, because other parents are “thanking them” all the time.
Let me repeat that:
Parents are posting private information about their children, they are posting difficult moments of their disabled children for praise from other parents.
Even if I believed in the “using my voice to advocate for my voiceless child” excuse, the parents themselves are betraying their true reasons.
Here is a direct quote from one of these parents:
“But I won’t be silenced, mainly because of the readers who have reached out to me to say “Thank you for sharing, I was feeling alone in this.” or “I understand better now what those with disabilities go through, thank you for that.” or “Wow, I never thought of it that way, you’ve made me really think about my word choices.”
Notice that a parent is claiming to understand “what those with disabilities go through” after reading something ABOUT a disabled person, WITHOUT the disabled person.
Let me tell you, as a disabled person, one thing that some of us go through: we experience frustration, we are left with a feeling of dehumanization and disrespect when someone claims to be our voices.
Do you really understand now?
And to be clear, nobody is trying to “silence” parents.
We are – at least I am – trying to make those parents see that they can share their own experiences without using their children’s experiences, names, and private information, which are not the same. Their children experience the world differently and that’s why they should use their own voices if and when they decide to.
Such parents are more concerned about their popularity than they are about their children’s privacy.
They state this themselves by admitting that the main reason is: “other parents are thanking ME, for helping THEM”. Helping the children is not mentioned, so how is that advocating “for the child”?
So, I say it again.
Your child’s disability is not about you.
Your child’s disability is not your story to tell.
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.