Identity Politics and Persuasion

Identity Politics is expressive but is it persuasive (a presentation)?

This first slide gives you a three-point summary of what I will talk to you about today:

Identity politics, the central role of social and collective identities in achieving social change and how to persuade the public to support our cause. They are all overlapping but separate concepts.

When I was asked to address this question (above) of identity politics today, I shuddered and balked. Identity is very important to everyone, it reflects who you are and how you relate to others. However, I knew that being part of the social category of autistic and striving for social and political change (for autistic people) meant that my existence would fall under the category of ‘identity politics’ and therefore we would be debating whether we should express our identity as a marginalised one and/or how obvious we should be about it.

When you debate this, please remember it’s our lived experience that you are questioning and that’s personal. Stacey has also communicated that for her personally “and commonly in the autistic community, offence is taken when our right to self-identify is questioned, dismissed or taken away.”

Slide 4: Identity politics definition

Bernstein et al. (2005) defines identity politics “as the activism engaged in by status-based social movements” and emphasizes “research that examines movements organized on the basis of status identities that are, to varying degrees, externally defined, where the identity itself forms a part of the basis of grievances.”

Without being very aware of mainstream discourse of politics outside social justice circles, I initially assumed that when talking about identity politics, what was being referred to, was all those groups of people who are discriminated against and their movements striving for equality. For the most part, that is what it is. However, it’s not just marginalised groups of people who fit the category of identity politics, it can also be those striving for more dominance such as white nationalists.

I decided that if I was going to present on identity politics, I would have to research it from an academic point of view because I was unclear how to proceed given that most of my thoughts were actually feelings and opinions based on my life experiences as a disabled women rather than fact. Although valid, feelings and opinions are more biased and I wasn’t sure how to articulate them. There have been lots of feelings and opinions since Trump was elected President of the United States. I think most people are probably quite concerned about how it came to this and it’s not just Trump but far-right Australian and UK politicians are gaining more power than we expected them to.

Slide 5: Addressing the criticisms of identity politics

  • Identity is integral to a person and cannot be removed.
  • Language and representation as resistance (to externally imposed language and stereotypes) to increase our value.
  • Risk of divisiveness: prioritise commonalities rather than differences and support intersectional identities.
  • Identity politics is necessary for equity for minority groups.

Some people generally, have suggested that it may be that the majority of people are becoming less tolerant of identity politics, they feel it is exclusive perhaps clique-like and that too many demands (which they think are unnecessary) are being made upon everyday people in everyday life. Karen and Paul also brought up concerns about the potential divisiveness of identity politics and that perhaps we need to prioritise our commonalities rather than differences. Karen also suggested being more intersectional in our approach, which I support (for example not leaving out people who don’t identify as a binary gender). Karen poses the question “How do the small groups have their voices heard so that they do not feel their needs are being ignored?”

Many people generally, also don’t understand that the changes in language and representation, which marginalised people insist others acknowledge, are often employed in response to negative stereotypes and language externally imposed upon us that devalue us and make us more vulnerable to discrimination. Paul is concerned about the over-emphasis on language though, in that they believe that “just about anything done or said could be offensive” even if unintended and can be off-putting to conservatives, in particular he refers to “our campaign to address ableist language”. If we become too political we may jeopardize financial support. In addition to words, Paul is also concerned about over-reach with actions and suggests that asking for too much from people (like autism-friendly spaces) may also discourage support.

Some people generally, have suggested that we all need to join together to demand better healthcare, education and work conditions and that it is the fact that we have separated that Trump and far-right politicians like him have gained power. However, this will never address issues of equity among minorities and is the reason identity politics has arisen to the degree that it has. Now proponents of identity politics are starting to adopt intersectional approaches to activism and form coalitions to support the rights of other marginalised people. For example, the recent Women’s March in the USA (which attracted record breaking crowds) took into account and made modifications to their website to support disabled women in response to criticism that it had excluded us.

Unfortunately, there are not a lot of academic articles that discuss identity politics, especially very recently. However, a handful of articles proved useful to explaining concepts to me.

Firstly, it is essential to know that identity is indeed central to social change. Not personal identity per se but social identity.

Slide 6: Social identity definition

Tajfel (1981) defines a social identity as “that part of an individual’s self-concept which derives from his knowledge of his membership in a social group (or groups together) with the value and emotional significance attached to that group membership.”

A social identity is defined as ‘that part of an individual’s self-concept which derives from his knowledge of his membership in a social group (or groups together) with the value and emotional significance attached to that group membership’

Slide 7: Collective identity definition

“…collective identities can be understood as (potentially) encompassing shared interests, ideologies, subcultures, goals, rituals, practices, values, worldview, commitment, solidarity, tactics, strategies, definitions of the ‘enemy’ or the opposition and framing of issues, it is not synonymous with and cannot be reduced to any of these things.” Fominaya (2010)

In the literature, in reference to social movements, it is referred to as collective identities. Collective identities can be understood as (potentially) encompassing shared interests, ideologies, subcultures, goals, rituals, practices, values, worldview, commitment, solidarity, tactics, strategies, definitions of the ‘enemy’ or the opposition and framing of issues, it is not synonymous with and cannot be reduced to any of these things.”

It has been shown that collective identity is necessary for social change and the commitment to action is dependent upon the effects of group emotion (such as moral outrage regarding injustice), group-based efficacy (belief in the ability to achieve change), and the groups action norms (what we actually do).

Slide 8:

I believe that families and supporters of autistic people could easily have a shared identity with autistic people based on norms, values and beliefs of our right for support and inclusion, to be considered valuable and contributing members of our communities and to be free from discrimination and violence.

All forms of social and collective identity are constantly in flux as people share their feelings, beliefs, values, actions etc. within the group. There are also sub-groups and hierarchical levels of social identity which becomes very important when discussing how to influence the views of the majority to support the minorities cause (referred to as political solidarity).

Slide 9: Higher-order identity

“It is the hierarchical organization of the social self that makes inter-subgroup solidarity (and inter-subgroup division) possible by allowing for subgroup differences to be understood with reference to higher order identity norms, values, and beliefs.” Subasic (2008)

There are three main actors in political solidarity:

The minority, the majority and the authority

The authority represents people in a position of social power emanating from a sense of shared identity and provides the authority with the capacity to persuade, influence, and wield legitimate authority over some relevant social majority. The authority could be perceived as the government.

“Authorities derive legitimacy from the perception that they share the relevant norms, values, and beliefs with the majority. Those authorities seen to violate such a shared sense of “who we are” will be questioned and their legitimacy potentially reduced.”

So it is that the minority must convince the majority that the authority is violating its shared identity by not supporting the minority adequately and the minority must also appeal to the majority’s norms, values and beliefs to convince them that treating the minority better fits a shared identity more congruent with them.

Slide 10:

I believe that the majority could develop a shared higher-order identity with us (minority) if we appeal to their norms, values and beliefs around not discriminating against autistic people in schools and workplaces and that we should be free from violence. The majority could also believe that the government (authority) are not doing enough to prevent restraint in schools, bullying and discrimination. This is the ideal situation leading to wide-spread adoption of our cause.

I believe that the majority could easily have a shared identity with our collective identity in that they have may share/develop norms, values and beliefs that autistic people should not be excluded by a lack of inclusion from schools, workplaces and the community and that we should not be bullied and abused. The majority could easily be perturbed that the government are not doing enough/anything (given the knowledge from various inquiries etc.) to reduce the violence against disabled people and autistic children being restrained in schools, now that they are aware of it.

A good example of political solidarity in action recently would be the methods used by Kon Karapanagiotidis, CEO and ‘public face’ of the Asylum Seeker Resource Centre (ASRC) to persuade the majority (or a large number) of Australians to pressure the Australian government to relocate the refugees stranded on Manus and Nauru islands.

These are a few of his most recent tweets (February 2017):

Slide 11:

Treating #refugees as human beings is not optional. Protecting #refugees is not optional. These are core values of any democratic society.

What makes Australia great is our #Indigeous culture, our thriving #Multiculturalism, compassion, welcome & freedom of religion. Protect it.

You can see that here Kon is drawing attention to the values of treating people well, having compassion and supporting freedom. Values that he states Australians should have if we identify ourselves as members of a democratic society. I will just give you a moment to read those two tweets…

Slide 12:

I’m now up to “46 real ways across Australia that you can help #refugees” right now to stand up a/g Trump/Turnbull & our values. Thread.

25 real things you can do right now in Australia to help #refugees as a way to stand up a/g Trump’s #RefugeeBan #MuslimBan. Thread.RT please.

And in these two tweets you can see that Kon is pointing out how the Authorities (Trump and Turnbull) are violating our shared values. I think Kon must have read the same journal article that I did because it’s a perfect example on how to persuade the majority of Australians to support refugees using the political solidarity approach.

Although Paul believes “we should not rely too much on identity politics” for concern of losing conservative support”, Karen, Stacey, myself and Paul all believe that identity politics can be persuasive but that it also depends how we go building our alliances and what strategies we employ to appeal to them.

Thanks to Karen, Stacey and Paul for their contributions.

References:

Bernstein, M. 2005. Identity politics. Annu. Rev. Sociol. 31:47-74

Tajfel, H. 1981. Human groups and social categories: Studies in social psychology. Cambridge: Cambridge University Press.

Fominaya, C. 2010. Collective identity in social movements: Central concepts and debates. Sociol Compass. 4(6):393-404

Thomas, E., McGarty, C., & Mavor, K.  2009. Aligning identities, emotions, and beliefs to create commitment to sustainable social and political action. Pers. Soc. Psychol. Rev. 13(3):194-218

van Zomeren, M., Postmes, T., & Spears, R. 2008. Toward an integrative social identity model of collective action: A quantitative research synthesis of three socio-psychological perspectives. Psychol. Bull. 134:504-535

Subasic, E., Reynolds, K., & Turner, J. 2008. The political solidarity model of social change: Dynamics of self-categorization in intergroup power relations. Pers. Soc. Psychol. Rev. 12(4):330-352

 

Advertisements

I’m a Board Director!

Yes, it’s true.

I’m on the Board of Governance of AMAZE.

And I wonder if I am experiencing internalised ableism or imposter syndrome or both because part of me thinks it’s funny. Although, I take the position very seriously and it fills me with trepidation (because I now represent autistic people on the board of an autism organisation) part of me finds the appointment of ME to the position amusing.

Don’t misunderstand me, I am very knowledgeable about autism and being autistic (just check out my old blog posts and follow me on twitter and you’ll see that disability and social justice are my special interests) but I still feel like a child on the inside (that’s the internalised ableism bit).

Although, my overall skills have improved due to practice and life experience, I still have the same essence of me that feels child-like. I still daydream, I giggle at my sons jokes and unexpected observations, I like games (board games, kicking a football or shooting hoops) and watching our pet chickens roam around our backyard simply being chickens. Sometimes, I still jump off a swing or climb an obstacle with my nieces and nephews, at a park, in fact often I do. When I visit my nan, I want to lie on the floor instead of sit in the chair while she talks and on long car trips I put my feet up on the front passenger dashboard. I forget that I’m forty and that’s unexpected behaviour at forty although, more-and-more, I am aware of what’s expected but I just disregard it because I’d much rather do what I like. I think to refer to those characteristics as child-like is prejudiced. It’s not child-like, it’s being carefree and my sense of what’s comfortable and fun is different and uncomplicated. I am not a child, I am an adult who doesn’t conform to adult culture.

Then, there is the fact that I need more guidance to accomplish tasks successfully. A perfect example is how I almost always get lost (with the exception of routes I take daily because they can be completed without conscious thought). I watched the movie ‘Finding Dory’ with my children, a few days ago, after reading this piece on how the movie covered the themes of disability surprisingly well. After watching it, I realised that Dory and I, although having different disabilities, had a similar need for a lot of support with following and remembering directions. Children need more help than adults usually, so there is the risk that I could be thought of as child-like (which would be ableist) because it is not acknowledging the fact that adults require supports too. Disabled adults need more support in an environment that does not follow the guidelines of Universal Design.

After writing this (which has served as self -exploration), I realise that laughing in disbelief, over my appointment to a Board Director position, is actually very ableist and when you are ableist against yourself (internalised ableism) it automatically has flow on effects to others. I apologize for that.

So now it’s time to redefine what it means to be a Board Director and all those other titles that have long been held by primarily privileged non-disabled adults so that people like me, don’t think that positions like those, are not for people like us and that they do accommodate our needs.

 

Talking to kids in the classroom about Autism

I had an awesome day today. My son Damian has been very anxious attending school recently for a number of reasons, which we are seeking appropriate help for. It occurred to me that it might help him to feel more understood by his classmates if I had a chat to them during class about Autism, diversity, difference and disability.

Initially, Damian was concerned that I would be telling the class all about him. He is very conscious (and rightly so) about people talking about his vulnerabilities. So I asked Damian if I could talk about my Autism (I am Autistic) and Autism generally and then mention him briefly at the end. He was much more keen on that idea. I let Damian read what I was going to talk about and he was very happy for the talk to go ahead. I will paste the talk below (and the kids’ answers and questions in brackets – at least the ones I can remember).

When the day of the talk finally came, Damian was as excited as I was to be talking about my favourite topic, only his reason for being excited was because I was his mum (he is only 7 years old; his classmates are 8 years old) and I was going to be talking about how being different was cool.

After the talk finished, Damian told me he loved it. He had sat wide-eyed at my feet and completely focused for the entire talk and this is a boy who was also recently diagnosed with ADHD. When I asked if he thought the other kids had liked the talk too he said that they might have been more interested in the toys and books* that I shared around.

I think the talk was well-received by both the teacher and the kids in the classroom. There was lots of interest in what I had to say and I was very interested in what they had to say too. There were some great discussions. The kids of tomorrow are going to rock this world!

Good morning everyone,

Some of you may already know me but for those of you who don’t, I am Damian’s mum. I have come to visit you today to talk to you about being different especially one type of difference called Autism. Can you say the word ‘Autism’ with me? Saying it out loud will help you remember it. Try it now. 1, 2, 3, “Autism”.

Before I start talking to you about difference, I am going to hand around some books about being different and you can flip through the pages quietly while I am talking and look at the pictures. I will leave the books in the classroom for the week, if you want to read the books but for now I just want you to look at the pictures and share the books around to others in your class.

A word some people use to mean difference is ‘diversity’. Can you say it with me? 1, 2, 3, “Diversity”. What does that word mean again? Can anyone tell me? (No-one could guess except Damian who said “Black people who aren’t treated well by white people!” I said that skin colour was one example of diversity and gave a few more examples. Some of the books I had shared around had themes of racism in them.)

Diversity, which means being different, makes the world a better place. Imagine if everyone was exactly like you, looked like you, liked the same things as you, wanted to borrow the same library books as you and brought the same things to ‘show and tell’ every week. Imagine how boring and even frustrating it would be.

In this world, there are lots of different people working and playing in different ways to make things more interesting, fun and better for all of us. We are pretty lucky that there are so many different, interesting and exciting people and things for us to do in the world.

You will notice in some of those books that some differences are differences that we can see. Some of the people in those books wear glasses like me, some have guide dogs, some use wheelchairs to get around, some people have brown skin and some people have white skin, some people are young and some people are old, some people live in different houses and some people wear different clothes.

But some differences cannot be seen. Can anyone guess what difference I might have that you cannot see? (One child guessed different blood-type, which I told him was a great guess because you can’t see blood- type. Another few children guessed other things that could be seen. Finally, I let my son answer because he already knew the answer.) That’s right, I am Autistic.

Even though I am different because I am Autistic, I am also a lot like you and I was even more like you when I was younger. I used to like playing with friends, swimming in our own swimming pool, climbing trees, riding bikes and reading books. Sometimes I was happy like on my birthday and when I played with my younger cousins and sometimes I was sad like when other kids teased me or I fell over.

In fact, everyone in this room has some things the same as each one of us and other things that are different.

But because I am Autistic, I am even more different to you in some ways. Kids and adults who are Autistic may sometimes do or say things that are a lot different to most other people their age because our brains work differently sometimes. Soon I am going to read you a book that will explain how our brains work and think differently.

Some things about Autism are really great and those things are different for each Autistic person. I like that Autism helps me to say and spell lots of really big words like ‘Autism’ and ‘Diversity’. Autism also helped me to be great at maths at school, whereas other Autistic kids found maths hard but found that Autism helped them with art or music or writing or certain sports.

People with Autism can sometimes be just as different to each other as you are from each other but there are some things we have in common and this is explained in this book ‘Inside Asperger’s Looking Out’.

‘Asperger’s’ is just another word people used to mean Autism. People don’t use the word ‘Asperger’s’ much anymore so I am just going to use the word ‘Autism’ instead of ‘Asperger’s’, wherever it is written in the book.

While I read the book to you, I’d like you to put your books upside down on your lap or on the floor and pass around these squishy toys to squeeze and stretch gently while I read. Kids and adults who are Autistic often use toys like these to help keep them calm when things are getting difficult for them because sometimes it can be hard being different. Many other people find the squishy toys relaxing too.

(I read the book but skipped a few pages because it’s very long. I asked the kids about what the ‘senses’ were before reading the pages about how our senses can be different and one very smart girl answered the question better than I could. I also paused on other pages to clarify.)

Does anyone have any questions about the book? (A couple of great questions were asked like “How do you know if you have Autism?” and “Where does Autism come from?” Of course, I answered relating it to my own experience.)

You know, I am not the only one in this room that is Autistic. Autism is something that you are born with that is passed down from your parents or grandparents or other relatives. So Damian, who is my son, is also Autistic. You might notice that sometimes he finds things easy that you don’t and sometimes he finds things harder than you. It is important for anyone who is different to be understood and treated well especially when they are finding things hard.

Our school classrooms and playgrounds can sometimes be difficult for kids who are different because they are not made in ways that suit them best. They often have too much noise for us, too many bright lights or too much movement and this can stress us out. It is called ‘disability’ when our classrooms, where we work and live and the rest of the world is not built to support our different abilities.

Can you say the word ‘disability’ with me? 1, 2, 3 “Disability”. Our buildings and the way we do things is built for most people but not all of us and we need people to make our schools and lives easier by changing things to make it easier for all of us. It’s only fair.

Can you think of ways we could change the classroom or the playground to make things better for kids with disabilities like Autism or any other disabilities that you can think of, so that it is better for all of us? (There were some great answers to this question. Some about not teasing or bullying kids who are different and some about having quiet areas that kids can go to.)

Now you can understand why some people and kids look or act differently and you can just be cool about it. It’s cool, it’s Ok to be different and we need different people in our lives and in the world and we need to remember that even though Autistic kids can be different they are also kids just like you who want to play, learn and be treated well.

(Then the classroom teacher asked the class if they found squeezing the squishy toys helpful for listening. Many of the kids did. The teacher said that he finds that if he draws patterns while listening he finds it helpful to listen and learn and he asked the children if anything helped them to learn better. A couple of kids answered.)

*These were books that I bought for my boys to read at home to increase the diversity of their bookshelves. I have reviewed many of them in previous blog posts here and here.

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.

 

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.

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”