Tag Archives: Self-advocacy

A year ago, I would have gone to a parent/teacher conference and not thought twice about my daughter being in the same room while we spoke about her.  Six months ago, I knew enough to know that she understood what was being said even if she didn’t indicate that she did and would move to another room or arrange for child care during a conference so she would not be present.

This morning I received a passionate comment from someone who was responding to another comment about parent/teacher conferences.   You can see the whole comment by going to yesterday’s post, but she ended with this:

“These things can ONLY happen in context of a culture of acceptance of the exclusion of Autistic people from discussions about our own lives, and of acceptance of the ‘need’ to speak of us in negative inaccurate terms because that supposedly fulfills some ‘need’ that will bring us help and support. It doesn’t EVER bring us the support we actually need because negative inaccurate information ‘about’ us means any support is founded in untruth and therefore is not help and support of US as the ACTUAL human beings we are.

PLEASE, if you truly want to help Autistic people, stand up for our right to be part of the conversation about our own lives from a VERY young age. Advocating FOR us is GREAT, but ONLY if the purpose of that is to support us in our SELF-advocacy… and to put pressure on professionals to accept OUR voices and OUR choices as the determining forces in OUR lives.”

My initial reaction was a defensive one.  My first thought was – but children are never present at parent/teacher conferences.  And then I realized that isn’t true.  My son Nic is asked to attend our parent/teacher conferences and has been required to attend them since he entered middle school (the fifth grade, the age Emma is now).  My second thought was, but what if one of her teachers or an aide said something awful about Emma in front of her, what if they spoke of her in language that would be hurtful?  I can’t control how others speak.  But then I realized that were this to happen in my son’s presence I would not hesitate in saying something in front of him to that person.  I would correct them and tell them why it was unacceptable and he would hear this and understand that this person was wrong in speaking this way about him.  Then I thought, but wait, we might need to discuss topics that might make her sad, things about self-injurious behaviors or how she ran out into the hallway and it wouldn’t be appropriate for her to hear these kinds of conversations, but again I thought of my son and realized how we would include him in the conversation.  As I went through the various reasons why I couldn’t do what the commenter suggested, I saw quickly just how insidious the ingrained prejudices regarding autism are.  I saw how I still have so much more to learn.  And so I continue to and I tweak my thinking and my behavior and then someone else tells me something and I have to think about their words and then I have to tweak my behavior some more.

Directly after reading this thought-provoking comment (I am so grateful to the writer for having sent it) I received an email from someone I care deeply about.  I do not have explicit permission to write about the specifics so I will not, but it was about where these kinds of ingrained beliefs can lead.  It was about abuse.  It was a story I am becoming more and more familiar with.  It was about someone I know.  It was about a defenseless, nonverbal child.  It was about more than one event.  It was about many, many abuses occurring over and over by many, many different people.  My horror is never lessened no matter how many times I hear of this.  In fact my horror increases.  What I used to believe, what I used to console myself with, that these were unusual, isolated instances of horrible people behaving in heinous way, is not something I can cling to any more.  These stories are everywhere and I am hearing them all the time now.  I cannot console myself that they are unusual.  I can no longer wrap myself in a cocoon of optimistic assurances that this hasn’t happened and will never happen to my daughter, because even if we are lucky enough that they do not happen to our specific child, they are occurring constantly to other people’s children.  How is that any better?  How is that any different?

The abuse of people who are considered “less than” and “incompetent”.  The physical, sexual and emotional abuse that Autistic people and children are having to endure at the hands of people ALL THE TIME that they come into contact with, at school, their care givers, the people they are suppose to be able to trust, their relatives, neighbors, the list goes on and on.  This is going on around us and to those we love and care about.  This is about people who are hurting, not just our children, but people all over the world who are deemed “less than”.  This is so much bigger than “our children”.

Em’s “self-portrait” – 2011

Related articles

• At What Point Do Our Actions Constitute Torture? (emmashopebook.com)
• Autism = A Human Rights Issue (emmashopebook.com)
• Spotting the Signs of Emotional Abuse (everydayhealth.com)