Shoes and humanity

My (early) contribution to the ‘Walk in our shoes’ flash blog

“Every time media reports about the abuse and/or murder of an autistic child, we are told not to judge. We are told to walk in the perpetrator’s shoes. Most of the time, the perpetrator is the autistic child’s parent.

But we have shoes too, and no one ever asks anyone to walk in the victim’s shoes. This flash blog invites people to walk in our shoes for a change.”

I’m tired. In so many ways and for so many reasons, I am tired. Today, I feel tired because I had to repeat myself again.

I carefully crafted my words (to the best of my ability), I researched statistics (to back them up), I tried to refine a logical explanation (as concisely as possible for your convenience) and I even told you how you made me feel (I’ve heard that helps?!).

I’m tired because I feel as though I’m wasting my time, my creativity and my hope for acceptance on you. Hopelessness is exhausting.

Why can’t you understand?

Maybe ignorance and denial is more comfortable. Majority opinion means majority support.

Maybe you disregard us as haters or PC police, without a second thought (I am not a troll and I am concerned about the well-being of others).

Maybe you think I am minimising your experience as a parent of an autistic child (there were times I really wasn’t coping as a parent and I sort help for ME. I did not abuse my autistic children when I wasn’t coping).

Maybe you want someone to blame for the wrongs of the world; a convenient ‘other’.

Maybe you have been responsible for more than your ‘fair share’ of oppression (there is no ‘fair’ share) and shame prevents you from further growth and connection.

Maybe you can’t handle the idea of being wrong. We all make mistakes, we are human.

Maybe you are missing a deep enough understanding of ableism, intersectionality and oppression. Please read about these concepts and keep reading.

Maybe empathy is not your greatest strength (not your fault) and you refuse to believe in anyone else’s experience besides your own (meet more diverse people, go where you haven’t gone before and do what you haven’t done before or read books and blogs. Learn to trust.)

You can never truly walk in my shoes.

Perhaps it’s more helpful if you work on the basics of your humanity: trust, vulnerability, acceptance and connection. But don’t apply your humanity without care because it’s the oppressed that need your support the most and abuse is never justified.

 

Advertisements

Ableism and homicide

“The media tend to report on hearsay… and not facts. They take pieces of a story or a perception of a story, link them together and then use engaging and emotive language to sell their own interpretation of a situation. The circumstances of what happened that day are unknown. The Police have not released any information…I think we, as a society, need to have respect for the family and the community who are experiencing something we could never imagine…Who knows what, why or when it occurred. I hope this doesn’t offend you. I too stand up for and speak up for people with disabilities and who experience DV (domestic violence) in families of all shapes and sizes.”

I had posted an article written by Stella Young, on my Facebook page, in the wake of an alleged murder/ suicide, which occurred several towns removed from where I was raised. The article was a damning criticism of the media’s response to it. Stella Young wanted to bring to our attention the ‘victim blaming’ rhetoric that was used by the media with respect to the murder victim’s disability and so did I.

The message above was sent to me by someone I love so I decided to remove the post for her sake, with massive feelings of guilt that I’d also committed a social fopar and caused people more pain. FYI the family were not Facebook friends of mine nor to my knowledge were any of their friends. One person commented that she knew friends of their friends and that they were grieving (implying that I should not have posted it).

This year in Australia a unique campaign against domestic violence was started and it has received significant media attention. It is referred to as the ‘Counting Dead Women’ campaign * and it gathers statistics on women as they are murdered. They report it immediately as it happens. The point is, this is happening now. Why do we need to wait a certain amount of time before commenting on it? As Emma Watson, UN Women Goodwill Ambassador, said in her speech during the launch of the ‘HeForShe’ campaign “If not me, who? If not now, when?”

Let me tell you something, I have never been a victim of domestic violence. However, if my husband ever kills me, I want everyone who ever cared about me to condemn his actions not sympathise or empathise with him.  If anyone refers to me being autistic as an additional stress on the relationship, I would like someone, anyone, preferably everyone to be ‘calling it out’ right away. Because ultimately, I will be the one who’s feelings should be considered foremost above the murderer and above the family and friends.

Over six months has passed since I posted Stella Young’s article and nothing more is reported nor will it ever be, as it is no longer news. However, Stella’s words still stick with me: “Some media have reported that police believe it was more than likely the ongoing strain caused Geoff Hunt to snap”.

Some of you will buy into the story that the burden of caring for a person with a disability could very well be a mitigating factor in any murder/ suicide. But there are by far more carers that do not murder or abuse the person they care for. I put to you that it is sexism / ableism/ racism in fact a long list of isms and phobias that are by far the mitigating factors. When the victims of domestic violence in Australia are predominantly women, with an even higher proportion of disabled women and indigenous women being abused, a pattern emerges. The statistics are similar in America for disabled women and women of colour.

It would be nice if everyone understood intersectionality. Intersectionality, as a concept, helps us to understand how the consequences of discrimination get greater for you when there are a greater number of things you can be discriminated against. Ultimately, the odds are not good for your mistreatment if you fit within more than one category of oppression within society (National Coalition of Anti-Violence Programs: Hate Violence Report).

A parliamentary research paper on the Domestic, Family and Sexual Violence in Australia determined that

“The full extent of violence against people with disabilities is unknown, but it is estimated that women and girls with disabilities may be twice as likely to experience violence as those without disabilities. Women with disabilities are particularly vulnerable to physical, sexual and psychological violence due to their situation of social and cultural disadvantage, and increased dependence. There are particular forms of abuse that are unique to people with disabilities, such as removal of an accessibility device, withholding medication and threatening institutionalisation. Adults with intellectual or psychiatric disabilities are particularly at risk of sexual assault and exploitation. When the abuser is the main carer, individuals suffer neglect, isolation and intense vulnerability to abuse; it may be impossible for them to get help.”

Note that no-where in this report do they say that it is the “burden” of caring that leads to an increase in violence against them but that women with disabilities are more vulnerable to violence due to their situation of social and cultural disadvantage and that there are additional forms of abuse available for them to be exploited by.

Thanks to the scare campaign about autism, led by Autism Speaks, autistic children are particularly at risk. We are essentially being told by Autism Speaks and compliant media that to be a carer is a burden that can lead us to murder. It’s almost beyond belief that Kelly Stapleton was given a platform to humiliate and blame her autistic daughter who she attempted to murder, on the American talk show ‘Dr Phil’.

Making excuses for murder no matter how well-meaning, effectively accepts it as inevitable thereby unintentionally condoning it. As Jess from ‘Diary of a Mom’ so eloquently explains when a life is devalued by violence it is time to judge. I contend that if we don’t judge privileged violent offenders and worse still if we judge the victim, we are complicit in supporting systems of oppression that exist within society in it’s very worst expression.

*and in an ironic twist, disabled women have been excluded from this campaign (refer here for details). This just helps demonstrate the depth of the problem.

The last man standing

Munch, crunch, slurp, burp! That is what I have learned in the past month or so. I’ve been volunteering, for a couple of hours a week, at my sons’ primary school. In particular, I’ve been given the task of helping a student with her writing but I strongly doubt that I’m actually helping.

It turns out that you learn, at the age of 7, how to engage your readers by starting with action words and clues, to some dramatic event. My student’s narrative was titled ‘Mr Mac ate me’. I find this ironic because a year or two ago, I attempted to write an Autobiography (just because anyone can, right?!). I went as far as to source an experienced author to look at a draft of the first few chapters and she was honest with me. She tried to be constructive in the short time she could spare a complete amateur in her busy schedule by telling me the exact same thing those 7 year olds are being taught right now.

I was also told that the story of being Autistic is no longer unique. We are too normal to publish it seems. Oh the irony! The third and final nail in the coffin of my Autobiography (besides not being able to write and being boring) was that I didn’t want to jeopardise any relationships that I have by being truthful about them and without the truth (or more accurately the truth the way I see it) the most interesting parts of my life can’t be told.

And now, I have a conundrum. My most recent blogposts have taken on a different angle because I feel I can no longer blog about the most interesting people in my life, my Autistic sons. Given that my sons’ truths are different to my truth, is it right for me to interpret their experiences and share them with everyone (even for the sake of sharing what I have learned)? Is it fair to them? Is it empathetic to them?

A cousin of mine recently said to me “I miss all those Facebook posts about the funny things your boys say and do. I used to show my friends and they thought they were hilarious”. I wouldn’t have been comfortable with my mum sharing stories with some of her friends, about the funny things I did or worse the personal awkward things and the upsetting things (closer friends I would have been ok with if discussed respectfully).

Maybe there is an age limit where the private stories stop, like when you stop taking nudie pictures of them playing in the bath or something. Maybe, I shouldn’t have started at all. Anyhow, from now on it stops and you are left with just me.

Hi!

(P.S. I’ve reinvented myself on Twitter @rachelmcnamar15 as a retweeter of the writings of others on all sorts of social justice issues. Don’t follow me unless you are seriously interested in social justice and keep in mind that many posts are Australia- specific)

“caregiver burnout”

This blog post by Love Explosions covers an important concept of parenting that is not unique to parenting autistic children and it does so brilliantly. Given that I have not covered the topic of self-care anywhere in my blog, I thought I should share it.

love explosions

"Caregiver burnout" caries the implication that the person being cared for is somehow culpable. It also leaves others with the impression that this state of emotional distress is inevitable when you have an Autistic family member “Caregiver burnout” caries the implication that the person being cared for is somehow culpable. It also leaves others with the impression that this state of emotional distress is inevitable when you have an Autistic family member

I dislike the term “caregiver burnout.”  To me, it carries a very negative and connotation about the person being cared for.  It also seems to imply some sort of culpability on the person under care which makes me super uncomfortable in a way that I cannot articulate.

It makes me so sad to see people using this term to describe themselves and all that it implies about their Autistic children.  And families.  It makes me sad that these stories of hardship dominate the conversations about Autism because it gives the impression that there is no alternative to this way of life–to this emotional state of being when you’ve got an Autistic family member.

The…

View original post 2,040 more words

to the autistic people in the crowd

It was a call for autistic people!

It was a call for autistic people!

In my last post ‘Autistic Voices’, I almost congratulated our State organisation’s (AMAZE) attempt at promoting autistic voices in their ‘SPECTROSPECTIVE’ movie project. I barely discussed that several of the videos submitted and shared were from a carers point of view and sacrificed the dignity and privacy of their autistic children (such as Addie’s video here http://www.spectrospective.com.au/gallery-4.html#). It was disappointing that those few videos compromised the message but I was so used to it that I accepted it as inevitable. However, just today I read this blog post by Jess from ‘A Diary of a Mom’ and I realised that AMAZE could have done better. AMAZE called for autistic voices (stories of autism from an autistic persons perspective) so they should have been the only videos shared. Neurotypical people should not be hijacking our voices. Neurotypical people already get most of the attention on the discourse of autism. Neurotypical people could learn from Jess. I could learn from Jess. Keep spreading your words Jess and amplifying ours, we need allies like you 🙂

a diary of a mom

I had made a decision. Before I said anything else, I would say this. Even if it were technically only addressed to 3 out of the 240 people in that room, it mattered. And it mattered that the other 237 hear it.

This is what I said.

I did my best to transcribe the words (below) for those who find auditory processing challenging. Any errors are wholly unintentional.

Thank you so much. Thank you for having me here to all of you and Lisa and Maeghan for all of the incredible that work you’ve done here. I hope you guys can take a minute now that you can breathe and appreciate what you’ve done. This is some pretty amazing stuff. Above all, thank you for ensuring that I am sharing the stage with Michele [Gauvin} who will speak for a few moments later. That’s Saturday, April 4, 2015

” target=”_blank”>really important stuff.

View original post 689 more words

Autistic voices

Our state autism organisation is called AMAZE. According to their website “Amaze is a member-based not-for-profit organisation and is the peak organisation for Autism Spectrum Disorder (ASD) in the state of Victoria. Amaze represents around 55,000 Victorians who have ASD and work for the benefit of all individuals and their families and to promote better understanding of ASD in the general community.”

To promote a better understanding of autism in the general community is a massive task when there is so much misinformation about it. The AMAZE Facebook Page posts are often followed with passionate comments about the sorts of ‘awareness’ articles they should and shouldn’t post from neurotypical parents of autistic children versus autistic people. A lot of the comments reflect ignorance and fear. The debates are predictable and painful.

Some neurotypical people, such as parents of autistic children, believe that autism is the worst thing that has ever happened to them or that it creates undue stress on their children so they wish their child didn’t have it and they would embrace a cure. Meanwhile, autistic people who embrace their autistic identity, both their strengths and vulnerabilities, feel that their disability arises from a lack of acceptance and inclusion. Not only do autistic people feel that they are undervalued and therefore discriminated against but that they are a likely target for eugenics through the search for a “cure”.

AMAZE will never please everyone but it should be clear which path favours social justice. Unfortunately, social justice has never been an easy path to take. If AMAZE chose to please the majority (a numbers game) they will be catering to neurotypical narratives of autism, which can often be ableist and unintentionally harmful to autistic people through stigma. If they chose to please the minority they are doing right by disability advocacy guidelines “Nothing about us without us” but they will lose popularity and likely donations to further “promote a better understanding of autism” (ironic).

We can support autistic people AND their families while being respectful to autistic people but the task of helping the neurotypical majority to see that seems enormous. It’s almost as though you need to give people a degree in autistic experiences to understand why this is necessary.

Perhaps AMAZE has decided to tackle the difficult path with their recent attempt at doing something different for the World Autism Awareness Day (autistic advocates would prefer the day to be called ‘Autism Acceptance Day’). Instead of the usual march, sporting blue shirts with the latest prevalence numbers printed on them (we are not a number), AMAZE chose to call for autistic people to video record their stories and send them in. The stories were edited and condensed into a 17 minute movie shown at cinemas in Victoria, on the 2nd of April and available to be watched online or by purchased CD.

The initial call was for autistic people to contribute but a few family members chose to speak on behalf of their child/children from their neurotypical perspective and how it affected them as carers, which was particularly unfortunate in the cases where the children were portrayed as a burden. However, the broader message of acceptance was clear enough for those willing to listen.

I chose to watch the movie online, in the comfort of home, with my autistic sons so that I could expand on different concepts that were raised. Much to my surprise and my boys delight, part of my video recording featured in it (at 14:03 min)*. You can view the edited movie and the individual videos at www.spectrospective.com.au. I’m curious to know if you found that it helped you to understand autism from the lived experience and made you question the common narratives of burden, numbers and cure.

*Although my boys were keen to contribute a video recording of their own, my husband was concerned about their privacy, which I respected, so they did not contribute.

The Grief of the Privileged

Grief as defined by Wikipedia is “a multifaceted response to loss, particularly in response to someone or something that has died to which a bond or affection was formed”. However, it is the grief of “expectations lost” that I am most intrigued by. Specifically, the expectation of giving birth to a “normal” or “typical” baby.

When I learned that my first born was on the autism spectrum, I did not grieve. I was relieved to have an explanation for his differences, luckily an explanation that I had just become personally familiar with. Yes, I felt lucky to share the diagnosis with my son, so that it was our normal. At worst, I was concerned that he would be socially isolated and develop lifelong anxiety and depression like I did but I didn’t wish I had another child instead of him and I certainly didn’t grieve for any unborn child.

Later, when I ventured into social media territory, I became bombarded with ‘gloom and doom’ rhetoric about autism that frankly made me feel like a less worthy person. Each word was a microaggression drilling little holes in me; burden, cure, hate, missing, stolen and grief. These days, it is so common to hear the rhetoric of grief being associated with diagnosis of autism that it becomes expected and I’m not the only one who doesn’t appreciate it.

Something I learned during my adult life when attending couples counselling is to always validate each other’s feelings (when I said “but it’s not logical” about my husband’s feelings, to the psychologist, it got me referred for additional counselling). So I was torn between validating others grief of the unborn child and somehow processing my feelings of unworthiness about their grief that were just as valid.

Then, I remembered a post by a transgender blogger titled ‘Transition is not death‘ and I remembered about the white lesbian couple who gave birth to a black baby and sued the sperm bank (read the last paragraph of this article about it) and I realised that we shared one thing in common. The children were lesser privileged than their parents in each case. The parents grief, although valid, was prejudiced. Do you know many parents who grieved that they gave birth to able-bodied, cisgender, heterosexual white children instead of another ideal?

In his article, ‘Don’t Mourn For Us‘ Autistic Advocate Jim Sinclair says “Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real…but it has nothing to do with autism” and he stresses the importance of grieving “away” from the autistic child.

I would add that part of that process of managing your grief should involve acknowledging the culturally learned aspect of grief whether it comes from ableism, sexuality prejudice, genderism or sexism or even physical attractiveness or intellectual ability etc. Not only should this be acknowledged to yourself (and for your social media audience when you refer to your grief) but also that you should openly challenge those prejudices and help to create cultural change so that one less person is duped into false expectations.

In the words of Jim Sinclair: “The tragedy is not that we’re here, but that your world has no place for us”