Six Questions Before Publishing About Children

 

Blogging About Children with Disabilities

Protecting a child’s privacy when parents write about their family’s experience . How much information is too much when blogging about children with disabilities?

The discussion revolving around #CrippingtheMighty, the hashtag created by Disability Visibility Project’s founder, Alice Wong, is so important when considering writing or blogging about children with disabilities. It’s imperative to listen to disabled people about their lived experience and the very damaging affects of content that objectifies and marginalizes disabled people like Inspiration Porn.

At Ollibean, we believe in full inclusion and acceptance of all people and stories that objectify disabled people can’t exist in the same space. So, before hitting “publish” when blogging about children with disabilities we Protecting a child’s privacy  follow this Editorial Guideline:

Writing & Blogging About Children with Disabilities

1.If I were dependent upon a partner, caregiver, or adult child and they published the same information about me, would I be okay with it?

If the answer is “No”, then don’t publish it.

If the answer is “Yes” — see number two.

2. If my parents had published the same information about me when I was a child, would  I be comfortable with the world  reading  it today?

If the answer is “No”, then don’t publish it.

If the answer is “Yes” — see number three.

3. Did the child give their permission? 

If the answer is “No”, then don’t publish it.

If the answer is “No, but …”, then don’t publish it.

               If the answer is “Yes”— see number four.

4. Would I publish the same information about a non-disabled child?

If the answer is “No”, then don’t publish it.

If the answer is “Yes” see number five.

5. Would  the child’s doctor or educators publish the same content along with personally identifying information ?

If the answer is “No”, then don’t publish it.

If the answer is “Yes”, and you’re familiar with HIPAA and FERPA, then it might be okay, see number six.

6. Could the information I am publishing be harmful to my child in five years? Fifty years? 

        If the answer is “No”, then publish it.

 The most realistic answer is “I don’t know.”

Important Exceptions: information that will save a child’s life, private groups, posting anonymously.

It’s Not Your Disabled Child, It’s the System

The things that make parenting tough – seeing your child in physical or emotional pain, watching them struggle – those things are hard whether your child has a disability or not.

The things that make parenting a child with a disability challenging- the prejudice and ableism, fighting systems for an equal education, equal and accessible medical care, accessibility, insurance coverage for a new wheelchair or communication device — are systemic injustices that have to change.

We can write about our parenting experiences without compromising our children’s dignity or claiming to “speak for” as opposed to “in solidarity with”  disabled people.

This can be hard to absorb at first, but it in no way diminishes the very real issues we face together as a family. As parents, we are fighting so hard for our children with disabilities to have the same rights as their siblings and peers without disabilities. Some of us are fighting for our children’s lives and have shared information hoping that someone has an answer or some connection that will help us find the right doctor so our child lives to see their next birthday. It can be easy for a parent to say, of course, this is about me, because it is my dear child that is going through it.

However, when disabled people tell us how damaging “Inspiration Porn” and posts that marginalize disabled people are, we need to listen. There are avenues for parents to feel supported and less isolated that won’t perpetuate the ableism roller coaster.

How would you feel if people around the world talked about  how “heroic” it was that a non-disabled person invited you to prom? Does that actually help students with disabilities feel more included their schools and communities or does it magnify  how differently they are treated?

What if your classmates had seen videos your mother posted of you at your most vulnerable moments ?

How would it feel to meet your teacher for the first time knowing she’d read your mom’s blog about how difficult it is being your parent?

Ableist narratives influence everything about how disabled people, including our children, are treated. Ableism — discrimination against people with disabilities— permeates every aspect of our culture. Ableism limits educational, social, and employment opportunities. It damages one’s sense of self and contributes to social isolation for disabled people.

Ableism is deeply ingrained in our society. It’s easy to spot when it’s blatant: segregation, abuse, institutionalization, murder, demeaning language, and eugenics. But it’s there when non-disabled people are praised for simply being kind to a person with a disability or when inspirational memes are shared to remind abled people they don’t have it as bad as this disabled person. This ableism directly contributes to the marginalization and dehumanization of people with disabilities. It’s much easier for people to abuse and discriminate against people when they don’t see them as human. Check out Martin Pistorius’ Tedx Talk or reading his book Ghost Boy for a better understanding.

Changing the narrative matters, ending ableism matters. Because no matter how loving and accepting our families are, it won’t prevent our children’s exposure to outside abuse and discrimination when narratives like this are perpetuated.

If you are interested in some great posts on this subject, see links below:

The Inspiration Porn Resolution

WHAT WOULD MOM & DAD DO?

Why I’m not in love with The Mighty

NEURODIVERSITY VS “THE MIGHTY”

Open letter to The Mighty 

Two Ethical Futures for The Mighty

WEEKLY READING LIST: “THE MIGHTY” EDITION

Why I’ve Had it With “The Mighty”

Disability Visibility Project (DVP)

#CrippingTheMighty: Our stories and labor have value

SOME REAL TALK ABOUT THE MIGHTY

INSPIRATION WITHOUT INSPIRATION PORN

The problems with The Mighty, and my suggestions for improvement.

A Letter to the Editor of The Mighty

Why I Dislike The Mighty & Better Alternatives for Parents….

If You Like It Then You Shoulda Put a Paycheck On It: My Real Problem With The Mighty (#CrippingTheMighty)

PACLA Petition: The Mighty: Apologize For The Harm You Do to the Disability Community!

Thoughts on #CrippingTheMighty

Looking Back at #CrippingTheMighty

Meltdown Bingo: Autistic Edition

Parenting Autistic Children With Love and Acceptance

Ableism FUBARs and Constructive Recoveries

Don’t Be Our Voice!

The input The Mighty asked for but has given no indication of wanting

What Do I Want From The Mighty?

Why can’t we all get along?!?

CAN U NOT: A Twitter Ode From Me To The Mighty

An Open Letter to The Mighty

Privacy Versus Popularity

Mentors and allies #autism

THE DAMAGING HISTORY OF BEING CALLED “INSPIRING”

Neurodiversity: Some Basic Terms & Definitions

A disability-focused website ran a ‘funny’ post on autism. Anger ensued.

#CrippingTheMighty

WEBSITE “THE MIGHTY” FACES INTENSE CRITICISM FROM DISABLED ADULTS

I have a wonderful family with kids who are adored and accepted for being exactly who they are, not in spite of their disabilities. My family is not tragic, burdensome, or ultra-special. The non-disabled members of my family do not possess a supernatural patience that have enabled us to escape the fate of the “special needs family” that dominates your news feeds and the neurodivergent members are not inspirational just for being. We are capable of heroic acts, but they can’t be translated into a meme that would make you feel thankful you weren’t in our shoes.

But, my family is not unique. Almost every family I know in real life and the families that I’m friends with online view their families the same way. Our families are made up of children whose diagnosis, medical issues and support needs vary greatly.

I believe that all parents love and care for their children and would do absolutely anything for them. We are human and we will make mistakes, but we are doing the very best we can with the information we have at the time.

And when we know better, we do better.

Writing & Publishing Content About Children 1.If I were dependent upon a partner, caregiver, or adult child and they published the same information about me, would I be okay with it? If the answer is “No”, then don’t publish it. If the answer is “Yes” — see number two. 2. If my parents had published the same information about me when I was a child, would I be comfortable with the world reading it today? If the answer is “No”, then don’t publish it. If the answer is “Yes” — see number three. 3. Did the child give their permission? If the answer is “No”, then don’t publish it. If the answer is “No, but …”, then don’t publish it. If the answer is “Yes”— see number four. 4. Would I publish the same information about a non-disabled child? If the answer is “No”, then don’t publish it. If the answer is “Yes” see number four. 5. Would the child’s doctor or educators publish the same content along with personally identifying information ? If the answer is “No”, then don’t publish it. If the answer is “Yes”, and you’re familiar with HIPAA and FERPA, then it might be okay. 6. Could the information I am publishing be harmful to my child in five years? Fifty years? If the answer is “No”, then publish it. The most realistic answer is “I don’t know.” Important Exceptions: information that will save a child's life, private groups, posting anonymously. Ollibean Logo

About the Author:

Advocate committed to inclusion & social justice, proud mother of three wonderful humans, and part of the team that started Ollibean.

3 Comments

  1. […] thy child without his/her explicit permission” (I paraphrase, but not much. See, for example http://ollibean.com/2016/01/06/six-questions-before-publishing-about-children/). Of course I cannot do that … realistically I am unlikely ever to be able to do that. So should […]

  2. Dale Reardon January 6, 2016 at 11:09 pm - Reply

    Hi,

    This issue brins up what the disability community wants from a news/opinion website.

    I am conducting a survey into the news and opinion / journalism needs of the disability community and would really appreciate your help with designing a new service and website:

    http://mydisabilitymatters.com.au

    Dale.

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