Friday, 30 March 2018

Autism Acceptance Day/Month 2018

 Many people know that April is Autism ‘Awareness’ Month (or Bewareness month as some autistic people call it).  The specific day set aside by the United Nations for World Autism Awareness Day is April 2.  Most people who follow autistic bloggers and/or are friends with autistic people know that most of us don’t like Autism Awareness Month.  Side note- I don’t presume to talk for every autistic person.  My opinions are mine and based on what I see in the communities.

Autism ‘Awareness’ Month is a time where organizations and groups, especially the big one A$, fund raise.  A big part of the way that they fund raise is by scaring people; telling the public that we are an epidemic; turning us into a list of symptoms; by saying how hard it is for our families and caregivers to take care of us.  

In 2011, Paula Durbin Westby started Autism Acceptance Month (Click here for some background) as a response to Autism ‘Awareness’ Month.  It is a day/month about us as opposed to non-autistic caregivers and parents.  We can talk about our autism, both the good and the bad parts, and celebrate it and each other.  It is a way of respecting autistic people and our contributions as humans. 

The past couple of years, I’ve noticed that organizations and groups are starting to refer to the day/month as Autism Awareness and Acceptance Day or Month, or even World Autism Acceptance Day.  They are starting to throw around words like neurodiversity, neurodivergent, and acceptance but they are just empty, meaningless words in these cases.  There is no action or follow through on their part.  I still see the same things coming out of these organizations and groups.  They have just taken our words and are using them to make it appear that they support and respect us.  Nothing has changed, except for the new words on banners and pages.  They still talk about us as symptoms and how we need to be fixed with therapies, like ABA.  We are still excluded. They hold conferences and presentations which do not include us even though they are about us.  Just before I wrote this post, I saw this come up on my Facebook Newsfeed,  "Join us tonight at 7:00 pm for our free first responders webinar. Hear perspectives of parents, police officers, and Autism Ontario professionals, with information and resources along with examples of what is working across our province to support people with autism and an opportunity to ask questions and hold a discussion.  It says nothing about actually autistic people, just everyone else.  We are not included in discussing supports for us!

 If we do get included, it is only autistic people who see things exactly the way the organization does (mainly because they don’t know that there is a whole autistic community out there and they can just be themselves instead of having to mask who they really are.  That is how they were brought up and the message in the media).  Also, if we are included, we are talked over and not listened to anyway.  I don’t see acceptance in that.  Where is our input?  If it is about us, then our input is the most important piece. 

If non-autistic people were listening to autistic people, then they would not just take our words to use.  They would not need their ‘awareness’ campaigns to know we exist.  They already know we exist, so do they really need to remind each other every year?  If they were truly listening, there would be action.  There would be change in how we are treated.  We would be listened to.  We would be respected and treated as human.  We would be accepted.  

photo says accept

Sunday, 18 March 2018

Disability Day of Mourning 2018

This year I participated in my first Disability Day of Mourning.  It is a day to remember the disabled children and adults who were murdered by their parents or caregivers.  In the past, I have watched videos and read blog posts online for the vigils but have never been in person.  Mainly because there has never been one in my area.  This year, the group that I am a co-founder of, A4A (click here for link) was holding a vigil in Toronto and I really wanted to be a part of it and to help out. 

It wasn’t going to work out for various reasons though, so I decided to hold a vigil in my town.  My first job was to find a room, because being Ontario, it is cold at this time of year and potentially snowy or rainy.  I posted on my Facebook page and in local groups to see if anyone knew of a cheap or free accessible room that we could use.  I had a couple of offers and went with the one a FB friend donated the use of.  He uses a wheelchair so he made sure that the room was accessible.

It was only three weeks before the vigil and I had no idea what I was doing.  The great thing is that ASAN (click here for link) has you sign up your site and they then send you all of the material you need to hold a DDOM vigil.  Close to the day, they send out the list of names to be read and also a recording of the names being read.  They do it that way because, sadly, there are usually more names to be added. 

On the day of the vigil I set up a project board on which I had taped the seven full pages of names (about 950 people).  In the front opening, on the table, I placed several battery-operated candles. 

There were a total of five of us in attendance.  I read something I wrote (shared below); I read one of the readings that ASAN suggested- Ari Ne’eman’s On Our Backs We Will Carry Them; we listened to a recording of all of the names being read and then had a moment of silence; after that we had a final reading which was also suggested by ASAN- You Get Proud By Practicing by Laura Hershey.

My thoughts on DDOM.  It is an important day to remember those disabled people who were murdered by their parents and caregivers.  It is a day to think about the way disabled people are treated.  Why are our lives less important than non-disabled lives?  Why are we considered burdens and worthless?  The way these murders are treated in the media and by parents and caregivers is one of the reasons.  The story becomes all about the murderer and how bad their lives were due to taking care of a disabled person.  There are few consequences for murder of disabled people compared to the murder of non-disabled people.  It seems like it is an acceptable thing to do.  There are reports of lack of supports, yet many of the murderers actually turned down supports.  Even if supports are lacking, there are always alternatives to murder.  The focus in the media needs to be on the victims and not the murderers.

Something I don’t understand with the vigils is that why are they so poorly attended.  I know not everyone can get out but there are many who can and what about the many people who say they are allies to disabled people.  Where are they when this day comes around? 

One day, maybe the DDOM will be a remembrance of those lost but without any new names being added.  That is something that many disabled activists are working for.  Here is a link to ASAN’s anti-filicide toolkit.
photo of display of names with several candles in front
The following is the speech I wrote for the vigil:

Before we start, I want to thank Dave and Joe for securing and donating the use of this room for our vigil.

Hello, my name is Mandy Klein and I am a co-founder of A4A Ontario.  I am autistic and physically disabled.  Today, I will speak a bit and follow it by with a reading.  I will then play a recording of someone saying the names of the disabled people murdered by their parents or caregivers.  We will follow this by a moment of silence and another reading.

Disabled people are as human as non-disabled people, but we are not treated as such.  We are looked down on, treated like children or even animals, and considered burdens.  We are abused and tortured in the name of therapy and teaching.  We are denied equal access to schooling, recreation, and jobs. 

When disabled people are murdered by their parents or caregivers, it is the murderers who are supported and told what they did is understandable.  This does not happen when non-disabled people are killed by their parents or caregivers.  Those murderers are vilified.

We are here today to remember those who were murdered by their parents or caregivers.  Murdered by people who should have protected and taken care of them.  We are also here to stand up and say that is not acceptable to murder someone because they are disabled.  Caregivers and parents who murder disabled people must be charged and sentenced the same as caregivers and parents who murder non-disabled people.