Autistic Culture: A presentation

 

Title slide:

Understanding Autistic Culture and Ableism

Slide 2:

Presentation Outline

  • Provide insights into cultural identity of autistic people
  • Provide background and contemporary views of disability and autism in society, including the Neurodiversity Movement and Autism Acceptance
  • Describe ableism and it’s impact

 

Today, I am going to talk to you about some concepts that challenge mainstream narratives and the typical ways of thinking about Autistic people. You may or may not be familiar with some of those concepts, for which there is much written about, both in scholarly journals, on blogs and in news articles by disabled activists and disabled scholars.

Because I have one hour to discuss these concepts with you, I will need to be concise, but it is only through further reading that you will truly be able to appreciate the nuances necessary to becoming a good ally to the Autistic community.

I have provided you with a document* that summarizes and contains links to helpful pieces of writing, which is a good start to becoming fluent in Autistic culture, rights and justice, an area which is often overlooked by the mainstream community.

Feel free to ask any questions, at any time.

Slide 3:

What is Disability Culture?

Three essentialist world-views of disability culture are possible (1)

  • Culture as Historical/ Linguistic: Descriptive definitions
  • Culture as Social/ Political: Common goal of resistance and justice
  • Culture as Personal/ Aesthetic: Personal identification and self pride

Peters (2000) proposes that disability culture is an amalgamation of these three views

 

As a child, I was taught about culture as follows:
You are born in a particular country, so you speak a particular language, wear a traditional costume for specific patriotic events and consume a particular traditional dish.

Culture is a lot more complicated than that.

A paper by disabled scholar Susan Peters titled ‘Is There a Disability Culture? A Syncretisation of Three Possible World Views’ traces historically, the different conceptualisations of culture, through to post-modern accounts. Peters explains that while early views of culture are static and descriptive, like the one I was taught in school, post-modernists view culture as essentially political.

Peters states that post- modernists view “Cultural identity as embodied in relations of power, the politics of difference, community and democracy”. Peters proposes three possible views of disability culture, each correlating to some extent with one or more of the historical/ traditional notions of culture and each of these having something to offer disabled people.

Slide 4:

Autistic Culture (A Sub- Culture)

Historical/ Linguistic World – view (1) (examples)

  • Language: identity-first language, rejection of functioning labels, neurodiversity, acceptance, rejection of ableist language etc.
  • Evidence of a cohesive social community: Online and social media, and ‘in person’ eg. ASAN, Yellow Ladybugs, ICan Network etc.
  • Generational genetic links

 

The Historical/ Linguistic World-View is primarily descriptive and lists attributes that can be observed, which are often evolving, such as a common language and evidence of a cohesive social community.

Autistic people often have strong preferences in how we want to be spoken about. This involves creation of new words and rejection of technical terms and mainstream ways of speaking about or to us that are negative and patronising. Given that you will be working closely with Autistic people such as me, it is important that you become familiar with and use language appropriately around us to avoid creating unintentional harm. Some of the readings on the attached resource document cover this well.

Autistic people gather in many spaces such as in support groups, sometimes at conferences but most importantly online. Online communities are more accessible for Autistic people and you can find us in Facebook groups and on Twitter using hashtags like #ActuallyAutistic and #AskAnAutistic

Our interactions may look different to those of those of non-autistic people but we are supporting each other, writing about and discussing our experiences and educating non-autistic people.

Slide 5:

Autistic Culture Cont.

Social/ Political World-view (1) (examples)

  • Autistic Self Advocacy Network (ASAN) (2)
  • Boycott Autism Speaks (3)
  • Neurodiversity Movement (4)
  • Autism Acceptance Month (5)

 

Peters states that the Social/Political world-view of disability culture involves a “lived community in solidarity of struggle for justice and equality”

Listed here are some of the movements that Autistic people have led together to achieve justice and equality. Later, in this presentation, I will briefly discuss the ‘Neurodiversity movement’ with you.

Slide 6:

Autistic Culture Cont.

Personal/ Aesthetic World-view (1) (examples)

  • A lot of us write blogs and some have written articles and books with different perspectives of experience eg. John Elder Robison (6), Wenn Lawson (7), Lydia X. Z. Brown (8), Ido Kedar (9),
  • Self pride in our identity as Autistic

 

The Personal/ Aesthetic world – view of disability culture focuses on each individual’s experience. It involves redefining one’s disabled body or in the Autistic person’s case ‘the mind’, in an aesthetically appealing way with the end goal of self-validation and empowerment.

Many disabled people are not actively involved in the political movements that act on behalf of them. I am going to make a risky assumption that there would be a higher percentage of autistic people involved in movements that affect them because of the common Autistic trait of an interest in social justice. Either way, there are still many who do not consider themselves political.

A Historical / Linguistic or Personal/ Aesthetic world-view of culture might be more relevant for them.

Ultimately, in her article, Peters proposes that all three of those world-views can and do act together to form disability culture that not only exists but is thriving.

Similarly, the Autistic community satisfies the same criteria. Autistic culture is not something that I have invented, it is talked about and written about by other Autistic people and experienced by others who have yet to be introduced to the term.

There are also other disability-specific cultures that are recognised such as Deaf culture and Little People culture. Others very likely exist but it is not inevitable.

Slide 7:

Concepts to help understanding for the uninitiated

  • Social Model of Disability (Vs Medical Model of Disability)
  • Ableism
  • Neurodiversity Movement
  • Autism Acceptance

 

In order, to understand how it might be possible for Autistic Culture to exist and to thoroughly appreciate why it should exist, you will need to distance yourself from mainstream narratives of autism that are highly influenced by systemic ableism. I will talk more about ableism shortly.

The concepts listed on this slide can help and I will briefly talk you through them. Apologies if you are already well aware of them.

Slide 8:

Models of Disability

Medical Model of Disability:

  • Focuses on the condition (eg. functional differences/ impairment)
  • The individual is expected to adapt, be fixed or be cured to overcome barriers to be accepted and participate fully in society
  • The onus is on the individual to change

Social Model of Disability:

  • Focuses on the barriers that are created by society, which prevent full participation by disabled people (eg. inaccessible or poorly accessible environments)
  • Society is expected to remove those barriers and create supports so that disabled people can participate fully in society
  • The onus is on society to change

https://www.youtube.com/watch?v=23oBOjQAYe8

 

To give you a break from my voice for a while, I will play a short video, which explains the difference between the older Medical Model of Disability, which unfortunately still has influence in mainstream practice, and the Social Model of Disability, which is preferred by most disabled people and is becoming the more acceptable model. Play video (youtube link on slide)

Slide 9:

Social Model of Disability

Society is responsible for the most pervasive challenges of Autistic people

“The social model sees disability as a problem caused by living in a society built around typical ways of moving, communicating, and thinking which a given individual might not be able to do. The social model says that some people are always going to have impairments, but that these impairments do not need to keep that person from participating in the world. It also says that society has a responsibility to work towards including, rather than excluding and disabling, people with impairments.”

http://www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/social-model/

 

The reason that the Social Model of Disability is preferred by disabled people is that it enables us to address the most pervasive challenges that disabled people face; that of a poorly accessible society that discriminates against us.

Slide 10:

Social Model of Disability Cont.

Origins and purpose

  • Idea: Fundamental Principles of Disability document first published in the mid- 1970s (11)
  • Term itself: Developed by Mike Oliver, in 1983, for professionals to make their practice more relevant to the needs of disabled people (12)
  • The term was eagerly adopted by the disabled peoples’ movement as they worked to “identify and eradicate…disabling barriers” (12)
  • Now used in mainstream settings such as the UN ‘Convention on the Rights of Persons with Disabilities’ (13)

 

Slide 11:

The challenges resulting from societal bias

Autistic community perspective

  • Acceptance
  • Accessibility in schools, workplaces and communities
  • Discrimination
  • Violence

 

You are probably already aware of some of the ways in which Autistic people are treated differently, usually in a negative and segregated way.

We may be discouraged from enrolling in mainstream schools and when attending them often find that they are not inclusive. They do not meet our needs because they are designed for the needs of non-disabled children and lack flexibility.

Unfortunately, disabled people are much more likely to experience violence and abuse than non-disabled people and that certainly seems to be the case for Autistic people when you review statistics of bullying against Autistic students at mainstream schools.

Many Autistic people would not disclose their disability to a potential employer because they may not get an interview and/or the interview might not be accessible, resulting in not being offered a job. Unemployment and underemployment is more common among Autistic people.

Regardless of how an individual Autistic person considers themselves impacted by being neurodivergent, all Autistic people face such societal biases to different degrees.

Slide 12:

Ableism

The term used to describe this societal bias is ableism

“Ableism is an entire way of thinking and doing that harms disabled people by treating some types of bodies and minds as valuable, worthy, and desirable, and others as undesirable and unworthy. Ableism is embedded in legal, social, and political institutions, as well as in commonly accepted and unquestioned attitudes and assumptions.” (14)

https://autistichoya.files.wordpress.com/2016/03/brief-abled-privilege-checklist-mar-2016.pdf

 

Slide 13:

Ableism

Origins and Purpose

  • The term ableism evolved from disabled people rights movements during the 1960s and 1970s (15)
  • “Describes prejudicial attitudes and discriminatory behaviours towards persons with a disability…” (15)
  • Ableism is a distinct non-analogous form of oppression as are other forms of oppression such as racism and sexism. People may also experience multiple forms of oppression, which is often overlooked when analysing any one form of oppression (16)

 

Although ableism is a form of oppression it cannot be directly compared to other types of oppression without causing harm to either cause. Each form of oppression is unique ad people may experience multiple forms of oppression. For example, I am a woman so I experience sexism but I am also disabled and so I also experience ableism. Both types of oppression have unique impacts on me even though they both devalue me.

I feel obliged to point out that I am very privileged, in many ways, which is why I am here in this capacity today. It is my personal opinion that it is not merit that has me standing here talking to you today but privilege. The privilege of being white, financially comfortable throughout my life and very well-educated. There is an article on abled privilege on your resource list but I also recommend that you Google other privilege lists (if you are not already familiar with them). These lists were all based on the original ‘white privilege checklist’ by Peggy McIntosh.

Slide 14:

Ableism cont.

How do we personally contribute to the de-valuing of Autistic people?

  • Ableism is communicated through our thoughts, words and actions, each reinforcing the other, whether intentional or not
  • Thoughts: “I couldn’t/wouldn’t/shouldn’t (eugenics) have a child like that or be like that”
  • Words (spoken thoughts): Ableist language such as “burden” and “suffering” etc. devalue our lives
  • Actions: such as inaccessibility, ableist violence and being excluded or segregated from mainstream society

 

Slide 15:

Neurodiversity

Definitions and origins

  • “Judy Singer, Autistic, coined the term in a not well-read thesis in Australia in 1988. Harvey Blume popularized the word in a 1998 issue of The Atlantic” (17,18)
  • “Neurodiversity is the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species” (4)

 

Slide 16:

Neurodiversity Movement

Definition:

“The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent” (4)

“The Neurodiversity Movement began within the Autism Rights Movement, and there is still a great deal of overlap between the two movements.” (4)

 

Ableism results in poorer life experiences for neurodivergent people some of those experiences are experienced by all disabled people but some are specific to neurodivergent people. Hence, the Neurodiversity Movement was conceived.

The Neurodiversity Movement is not just for Autistic people however, it is also inclusive of other disabled people with cognitive disability and/or mental illness.

Slide 17:

Autism Acceptance

Origin of the term

Autism Acceptance as a concept has a history as long as the Autistic community itself, dating back to Jim Sinclair’s seminal classic “Don’t Mourn For Us”19. and perhaps most visibly popularized by Estee Klar’s “The Autism Acceptance Project” (5,20)

 

Slide 18:

Autism Acceptance cont.

Definition of the term

  • “Autism acceptance means embracing autism as a natural part of human diversity, and accepting people as members of a neurological minority group who are entitled to the same rights as everyone else, with brains that are perfectly fine the way they are.” (21)
  • “Autism acceptance means believing that autism doesn’t need to be fixed or cured for autistics to be happy and live good lives.” (21)

 

The final concept, Autism Acceptance is both a term and involves action. It matters strongly to the Autistic community. We reject the language of awareness because simply to be aware of our existence is not helpful and if that awareness is based on mainstream narratives we would argue that it is harmful. I have noticed that other disabled communities have also rejected awareness language for similar reasons. Instead of promoting awareness we prefer the use of the term acceptance.

Not only do we exist but you should accept us as we are now; we belong in society as we are right now.

Final Slide:

 “Claiming a cultural identity of our own moves us toward reclaiming ourselves from the Other, and establishes us as subjects and active agents of transformation beyond objectified and marginalized Others.” (1)

 

This is why we need culture. We are not defined in opposition to non-autistic people. We are not you but with less of something. The judgement of us (by the non-autistic majority) as ‘Other’ enables us to be devalued and discriminated against through ableism. Autistic Culture is not only thriving, it is necessary.

*I will copy the document, containing relevant reading, as a blog post soon. In the meantime, readings were condensed from a previous blog post that can be accessed here.

References:

  1. Susan Peters (2000) Is There a Disability Culture? A Syncretisation of Three Possible World Views, Disability & Society, 15:4, 583-601
  2. Autistic Self Advocacy Network http://autisticadvocacy.org/about-asan/
  1. Boycott Autism Speaks https://www.facebook.com/pg/boycottautismspeaksnow/about/?ref=page_internal
  1. Walker, N. (2014, September 27). Neurodiversity: Some Basic Terms & Definitions. Retrieved from http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/
  2. Autism Acceptance Month (About Page) Retrieved from http://www.autismacceptancemonth.com/about/
  1. John Elder Robison http://www.johnrobison.com/purchase-books.php
  1. Wenn Lawson http://www.buildsomethingpositive.com/wenn/books.html
  1. Lydia X. Z. Brown https://autistichoya.net/papers/
  1. Ido Kedar http://idoinautismland.com/?page_id=213
  1. Social Model of Disability, Autism Acceptance Month. Retrieved from http://www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/social-model/
  2. The Union of the Physically Impaired Against Segregation and The Disability Alliance (1975, November 22). Fundamental Principles of Disability. Retrieved from: http://disability-studies.leeds.ac.uk/files/library/UPIAS-fundamental-principles.pdf
  1. Mike Oliver (2013) The social model of disability: thirty years on, Disability & Society, 28:7, 1024-1026
  2. The United Nations (2006) Convention on the Rights of Persons with Disabilities. Treaty Series, 2515,3 Retrieved from https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-1-purpose.html
  3. Lydia X. Z. Brown (Updated 2016, March). Autistic Hoya’s Brief Abled Privilege Checklist. Retrieved from https://autistichoya.files.wordpress.com/2016/03/brief-abled-privilege-checklist-mar-2016.pdf
  4. Various. Encyclopedia of Disability; Sage Publisher: Newbury Park, CA, USA, 2006.
  5. Tanya Grillo and Stephanie M. Wildman (1991) Obscuring the Importance of Race: The Implication of Making Comparisons Between Racism and Sexism (or Other –Isms). Duke Law Journal, 40:2, 397-412
  6. Debra Muzikar (2016, November 11) Neurodiversity: A Person, A Perspective, A Movement? Retrieved from http://the-art-of-autism.com/neurodiverse-a-person-a-perspective-a-movement/
  7. Thomas Armstrong (2015) The Myth of the Normal Brain: Embracing Neurodiversity, AMA Journal of Ethics, 17:4, 348-352
  8. Jim Sinclair (1993) Don’t Mourn For Us, Published in the Autism Network International newsletter Our Voice 1:3 Retrieved from http://www.autreat.com/dont_mourn.html
  9. Estee Klar (2006) The Autism Acceptance Project, Legacy Site, Retrieved from http://www.taaproject.com/
  10. Autism Acceptance Month (Definition: Autism Acceptance) http://www.autismacceptancemonth.com/resources/101-3/autism-acceptance/autism-acceptance/

 

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Bringing Autistic People onto the Board of Amaze (APAC 2017 presentation)

This was a co-presentation. Jane’s part of the talk, relating to logistics, has not been included.

Today Jane and I are going to talk to you about the process that Amaze followed to bring autistic people onto the Amaze Board, and our personal experiences of that journey. We, and Amaze, believe that Autistic people should have key decision-making roles in the organisations that support them, and we want to share what we have learned about how to make this happen effectively.

I will begin by giving some brief background information about Amaze and then Jane will talk about the process that the Amaze Board went through when introducing Autistic people onto the Board and the Board Committees. Finally, I will conclude our presentation with some observations from my experience as an Autistic Board Director of AMAZE and some personal perspectives on accessibility.

[SLIDE Who is Amaze]

Who is Amaze

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Amaze, Sub-heading: Who is Amaze? Body of text (in bulllet point format): Peak body for Autistic people, their families and supporters, in Victoria; Build understanding and acceptance; Influencing positive systemic change through advice to governments and media exposure; Build capacity in the wider community.

AMAZE is the peak body in Victoria for autistic people, their families and carers. We are not a service provider.  We want every autistic person to have the opportunity to exercise their own choice to participate meaningfully in, and make a valued contribution to, our society. We build understanding, engagement and acceptance of autism. We develop community capacity by working with others to help them value and support autistic people and their families.

(Hand over to Jane)

Thank you Jane

I was first introduced to AMAZE like many Victorians are, to access funding for my children. I then became a member of AMAZE and followed AMAZE on social media.

After sometime, I became known to Amaze because I expressed my opinions on various topics on their social media posts. Amaze was interested in my opinions as an Autistic person.

It was the strategic plan that made me want to be further involved with AMAZE. I was excited that Amaze wanted to centre our voices as Autistic people. The potential for progressive socio-political change, as outlined in the strategic plan, was promising because Amaze has a lot of influence.

So after a couple of meetings, I had been offered and accepted the casual vacancy of Board Director with Amaze and was elected at the end of last year for another 3 years.

That is not the end of the story. It’s just the beginning. It is challenging to be an autistic board member for an organisation that aims to support us. There are lots of reasons for this.

[SLIDE Ableist language]

Ableist Language

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Ableist Language, Sub-heading: Impact Body of text: a) is part of an entire system of ableism, and doesn’t exist simply by itself, b) signifies how deeply ableist our societies and cultures are by how common and accepted ableism is in language, c) reinforces and perpetuates ableist social norms that normalize violence and abuse against disabled people, d) actively creates less safe spaces by re-traumatizing disabled people, e) uses ableism to perpetuate other forms of oppression, – from Autistic Hoya’s Violence in Language: Circling back to Linguistic Ableism.

First, staff and other board directors were very committed to ensuring my needs were being met but those same board directors were also not autistic and generally less sensitive to everyday ableism and its detrimental impact on us. I and the other Autistic Board Observers identified, very early on, that some proactive education was required to help the non-autistic directors, and others working in Amaze, to become more aware of how their choice of words could unintentionally offend or harm us as autistic people. Jane and I gave presentations to the Board and to the staff of Amaze about what constitutes ableist language, it’s impact and how to avoid it. This was very helpful.

Another area that I found challenging was in adjusting to being a Board Director having not had prior experience in that area. During my first few Board meetings, I was very anxious and tried to guess when and what to say based on what I thought might be expected of me. I was trying to do what we in the Autistic community refer to as ‘passing’.

[SLIDE Passing]

Passing

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Passing, Sub-heading: Definition, Body of text: Passing is the ability of a person to be regarded as a member of an identity group or category different from their own, which may include racial identity, ethnicity, caste, social class, sexual orientation, gender, religion, age and/or disability status – from Wikipedia

Although, I wasn’t trying to pass for neurotypical specifically, because I was there for my Autistic identity, the culturally-expected behaviour of a professional fits that of elite neurotypical – like behaviour (something that will hopefully change). Passing is a survival strategy that is hard to stop using due to habit. It is also anxiety-provoking. I was in awe of the other Board directors who all had very impressive qualifications and experience but I have what is called ‘lived experience’ and it really is necessary to have that in all facets of the organisation including the Board.

Any kind of organisation that attempts to help people can also inadvertently harm people. Lived experience means that you have the added advantage of directly feeling the emotional, physical and social impact of any words and actions that are incorrectly assumed to be supportive, so you know if something is actually harmful rather than helpful.

[SLIDE Lived experience]

Lived Experience

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Lived Experience, Sub-heading: Advantages, Body of text (in bulllet point format): Feel the impact of words and actions that may be incorrectly assumed to be supportive, Access to discussions within the autistic community that are different to those that non-autistic people have about us, which should be considered in decision-making, Creative solutions.

It’s not just our individual innate feeling that is useful. If you are a member of the autistic community, and for me this is via social media, you are involved in discussions about disability rights, ableism, what supports and research are helpful and what’s harmful. These discussions often vary greatly from the discussions that non-autistic people are having about us. Our collective innate feelings lead us to the most relevant, helpful ideas. Only autistic people can bring this lived experience to the Board and it is for this reason that our contributions greatly improve the quality of Board discussion and, as a direct result, Board decisions.

Support for autistic people on Boards must be established from the beginning, but it’s important to be aware that support needs vary between autistic people, are dependent on context and may change over time.

I remember my first support meeting with Jane. Jane had suggested that we catch up for coffee on a regular basis to debrief. I thought that was a great idea. Jane asked where I would like to meet but me not being a very social person nor aware of social places, preferred for her to choose. It became obvious from that first meeting that I was not a ‘meet for coffee’ kind of person. I was so distracted by the noise and movement of café patrons and staff that I couldn’t reflect on my experiences or make conversation in even the most basic form. From that day, we established that email contact was better and only for when I needed it because that is what worked for me best and therefore my preference.

If I was to anticipate where your processes and environments may not be accessible to Autistic people, it would cover several main areas that I will speak briefly about now:

[SLIDE The sensory environment]

Accessibility

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Accessibility, Sub-heading: Sensory environment considerations, Body of text (in bulllet point format): Background noise and activity, Distractions / Interruptions, Lighting, Personal space, Breaks to move or eat or stim etc.

The sensory environment of the Amaze meeting room was not ideally accessible. The main thing that I remember was that there was not enough room around the table for everyone and there was constant low-level background noise. I feel very uncomfortable sitting too close to people and find it hard sitting at an awkward angle away from the presentation screen (because I rely heavily on visuals). This impacted on my ability to concentrate on and contribute to Board meetings. After identifying this as an accessibility issue, an alternative room was sourced with input from the Board Observers and I, and it has made a substantial difference for us.

[SLIDE The social environment]

Social Environment

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Accessibility, Sub-heading: Social environment considerations, Body of text (in bulllet point format): Be flexible with social etiquette where possible and provide clear instruction about what is expected, Keep social demands to a minimum if needed, Provide support with social conversations if needed, Use preferred communication methods for socialising and communicating generally

The social environment. Socialising adds an extra level of difficulty so supports should be provided around that. Making sure that we can hear conversation is important because background noise makes it very difficult to isolate and hear speech if we have auditory processing difficulties. I often find that I forget people (a facial recognition issue, which is not uncommon among Autistic people) and forget details about people lives and social conventions generally. It can be helpful if I am re-introduced to people, in a casual way, as if you have forgotten that you ever introduced them to me in the first place.

[SLIDE New experiences]

New experiences

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Accessibility, Sub-heading: New experiences, Body of text (in bulllet point format): Anxiety greater for new experiences, May require more assistance then expected when doing things for the first time, Scripts, examples, visuals, In-person support if helpful

New experiences. I find doing things for the first time anxiety-provoking. A new experience could be hosting a new event (which also involves a social component) or taking on a new project. I felt that I should volunteer to do something one day, so I offered to implement an evaluative survey without thinking it about it first. I had never done anything like it before and really didn’t know how to begin. Fortunately, an intuitive Board director went through the software with me in person, provided me with contacts when they couldn’t help and gave advice and feedback on how to present the data. It is important that we are not overly-nurtured generally, as that could be patronising, but for new things it can be invaluable to have extra instruction, in-person support and even example scripts (such as in the case of hosting events).

[SLIDE The emotional environment and ableism]

Ableism

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Accessibility, Sub-heading: Emotions and ableism, Body of text (in bulllet point format): Trigger warnings and sensitivity, Ensure all directors and staff understand disability rights and ableism to avoid unintentional (or otherwise) discrimination, Pair with a sensitive, confident non-autistic director / mentorship for support

The emotional environment and ableism. As Autistic people, we are used to people arguing with us in person or on social media that our support needs, including for acceptance, are irrelevant, unnecessary or too hard and that we are being too sensitive or too demanding. Debate about issues that impact us can therefore be challenging. We’ve refined our arguments through practise but constantly having to argue, advocate and debate for our lives to be valued and supported, combined with past abuse or trauma, can become triggering after some time. A lot of unintentional ableism and conflict around sensitive topics could be avoided if non-autistic board directors had a good understanding of disability rights and autistic culture and I would strongly recommend considering this as a preferred criteria in your position descriptions when recruiting new directors and staff and/ or making it an induction and training priority.

Having a trusted and sensitive non-autistic Board director to provide support when bringing up sensitive issues is also very helpful. I don’t want to always have to be the one to explain everything when something is problematic because I don’t want to be associated with “problems”. I’m also not really that great at explaining things without a prepared script (the right words aren’t easy to think of quickly) so support during a meeting with explaining important concepts can also be helpful.

[SLIDE Quote]

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Light green poly-sided shape protruding from top right corner of the slide. orange poly-sided shape  protruding from the bottom right of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: “Autistic people are leaders (too).”

If I was to sum up my experiences at Amaze for the past 18 months, it would be by listing a range of intense emotions: excitement, fear, disappointment, anger, confusion, pride and hope. I do have high hopes for what Amaze is capable of achieving and I want other autistic people to join me on Amaze’s board and the board of other autism and disability organisations so that we can lead the change for our futures.

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

 

Disability and Australian Politics

I was shaking from the cold. Trish* told me to put my jacket on and I wondered if she was trying to get me to cover up my bright green shirt and logo and the oversized ‘Vote Greens’ badge but she was twice my age and appeared to suffer worse from the cold than I did and was probably just looking out for me. She told me that she likes to “mother” people. As I handed out flyers for the ‘Australian Greens Party’ she handed out flyers for her political party of choice and chatted to me about her family and the dramas in their campaign.

The whole situation amused me. This was the first time I had ever handed out flyers at an election and the experience was a unique one. Here I was standing next to and chatting to a seasoned ‘Liberal Party’ (a conservative party in Australia) supporter when I would never in my life vote Liberal.

Usually, I was the one dodging the people handing out flyers, avoiding eye-contact with the party volunteers and saying “No thanks” and now I strongly felt the discomfort of others approaching as their eyes darted side-to-side for the quickest and least confrontational route to the end of the queue. I was feeling equally uncomfortable as a result and not sure when to make eye contact either, if at all, but they say some people are undecided when they arrive and they are not likely to vote Green if they don’t have the flyer in their hand while making the decision. I wish they had signs on their foreheads saying ‘undecided voter’. I just tried to be as friendly as possible without exposing my weak conversational skills.

Earlier that morning, when I had been standing alone, I was approached by an anxious looking woman who told me that it was not the Government that was running the country but that it was her family that ruled the world. While she talked she kept asking if I understood. I nodded my head politely and tried to understand what she was saying but her conversation was erratic and I have auditory processing difficulties. She was talking a lot and I didn’t know if she would stop if I couldn’t find a way to end it. She mentioned something about Judaism and said that religion ruled the world. I thought about mentioning that I wasn’t religious but I wasn’t sure if that was the right approach. I said “What can I do for you?” Eventually, she mentioned how literacy has changed the world for the better and how important health and education were. Bingo! She’s right. I said “I agree that health and education are very important and see here on our flyer where we make it a priority”. She smiled at me for the first time because that was the message that she was so desperate to impart. I thanked her for talking to me about it and wished her on her way.

After being stuck in some glare from the sun (I have sensory processing difficulties), I had asked to swap spots with Cath (the other Greens volunteer) and I had found a safety net in Trish who was on my left. Next to me on the right were two extreme right-wing party volunteers. I couldn’t bring myself to make eye- contact with them because of the hate and division they create in our communities. One of their right-wing signs said ‘Multi-ethnic. One culture’ and something about making ‘Australia more Australian’. I wasn’t listening to what they were saying because I didn’t want to feel sad right then but I had no plans to move. They were the first to hand out flyers to voters coming from one of the carparks and I wanted to follow that up with a Greens flyer for those people like me who get upset by the cruelty and racism of right-wing politics. It’s ok, I’m here and I don’t hate. At one point, I overheard one of the right-wing volunteers say to the other “People think our party is racist but we have people from different nationalities in it” as if the presence of people of different nationalities means that it must not be racist.

Trish had greeted an unhappy looking guy in a flannel shirt with “You don’t look very impressed to vote today” in a joking manner and he was ready to let us have it.

“Well, none of the parties are any good!” he said “I’m an environmentalist but the Greens keep contradicting themselves on that (I made an assumption that he was a hunter/ fisher kind of guy) and the Liberals are only interested in putting money in the pockets of the rich.”

He turned to the right-wing volunteers beside me and said “You are more like it! At least you are looking out for Australians!” Trish tried to settle him down by talking about democracy generally but I strategically spotted some people in the distance and moved away to hand out flyers to them. When I came back Trish apologized to me and said “I’m sometimes too friendly and I didn’t mean for that to happen”. I told her it was fine. I liked her friendliness, it prevented me from having to stand alone wondering when to make eye contact with people. Next to her, she could talk and I would just hand out my flyer as if it was a second thought to passers-by, which seemed much less confronting for me and them.

At one point, Trish disappointed me. A women was pushing the wheelchair of a young man who appeared to be quadriplegic. She rejected all of our flyers. Trish said “Probably a donkey vote.” She didn’t say that about anyone else. It seemed like she made an assumption based on the disabled man. I acted as though I didn’t understand what she meant although deep down I suspected she had wanted me to laugh about it or accept the statement as likely, which would make it an ableist joke at worst and an ableist assumption at least. People who are quadriplegic can vote too.

Disability rights is one of the reasons I decided to hand out flyers for ‘The Greens’ today. I’m autistic, disabled and proud. Here’s what the Greens have to say about disability: Parties respond to **ACDA election platform

*Trish: Not her real name.

**ACDA: Australian Cross Disability Alliance

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.

More diverse books for kids

If you are passionate about diversity and you have children, you might be interested in these children’s books. I have written about other diverse books that I bought for my children here.

IMG_3097-small

A photo of the front cover of the book ‘Ugly’ by Robert Hoge. Background is light-greenish yellow. A rough sketch (as if done in black texta on white background) of a young man’s face. He has thick ears, short straight black scruffy-looking hair, big bushy eyebrows and small black eyes set wide apart. There is an uneven line drawn down the middle of his face (suggesting an uneven bone structure) passing through a wide asymmetrical-shaped nose. The word ‘Ugly’ is at the bottom of the page, slightly to the left, obscuring the chin of the sketched face. The word appears written with crooked block letters and looks as if it is coloured-in poorly with red pen.

It is a true story written for children probably from around ages 8 and up, although I found this book captivating to read myself. The blurb at the accurately refers to the book as “engaging” for readers but it was a bit disappointing to see it also refer to it as inspiring given that ‘inspiration porn’ is considered problematic by many people with disabilities. Regardless, this book gives some great general and specific life lessons about the stigma of disability, the unnecessary and cruel nature of teasing, about how dedication and practise can lead to success and about believing in the competence of people with disabilities. A must read!

IMG_3101-small

Photo of the front cover of the book ‘I Love Being My Own Autistic Self!’ by London Bryce. Background  colours are bold yellow, black and red. A blue cartoon character is situated near the centre of the red part of the background, from the chest up. The character has no hair, thin long dark blue eyebrows, thin closed dark blue eyes, small almost egg-shaped dark blue nose and an open wide mouth in the shape of a smile with two white bottom front teeth slightly visible. There is a speech bubble leading to the characters mouth (which is white fading to grey at the edges with black print) with the words ‘I Love Being My Own Autistic Self!’ in black. Across the bottom of the front page on a light grey background are the words ‘A thAutoons Book by Landon Bryce’.

This book is written for autistic children to help them make sense of their own identity and the contradictory messages they receive about autism from others. It is unique from other children’s books about autism in that it uses identity-first language, the preferred language of many autistic people.

This book is written from the perspective of a fictional autistic boy called Vector who introduces us to other characters in the story such as his autistic friends, neurotypical friends and family. All the characters appear as simple cartoon characters.

Vector explains the differing thoughts and feelings about autism of himself and each of the characters, including what Vector considers to be the “good” and “bad” parts of his own autism.

I actually scribbled out the words “good” and “bad” because it didn’t sit well with me and instead I wrote ‘strengths’ and ‘vulnerabilities’ above where those words are. Everybody has there own preferred language and I’ve never been a big fan of ‘good’ and ‘bad’.

What is best about this book is that it puts Vector’s thoughts and feelings about others’ perspectives at the forefront of the story and would probably help neurotypical readers to be less ableist and more supportive (if they were open-minded, which if they purchased the book, they probably are).

IMG_3095-edited-small

Photo of the front cover of ‘If the World Were a Village’ Third Edition. By David J. Smith. The front cover has a mottled dark blue background. A fuzzy circle approximately 15cm in diameter representing the world is in the centre of the page. Dark green colour represents the land mass and dark blue the sea. On the upper right hand side of the largest section of land mass there is a forest of lush green trees interspersed with groups of buildings of differing sizes with red roofs, white walls and blue windows. Outside the circle in the upper right-hand side and lower left-hand side is a large (2cm) yellow star with 5 points. The star on the bottom of the page has a triangular strip of yellow leading to it from the right- hand corner of the page. The title of the book ‘If the World Were a Village’ is at the top of the page in large yellow print. At the bottom of the page in slightly smaller yellow print is the text ‘A Book about the World’s People’.

Quoting directly from the book:

“This book is about “world-mindedness,” which is an attitude, an approach to life. It is the sense that our planet is actually a village, and we share this small, precious village with our neighbours. Knowing who our neighbours are, where they live and how they live, will help us live in peace.”

It condenses the world into a small village of 100 people in order to make comparisons between people in the world easier for children to comprehend. Each person in the village represents 71 million people from the world. The comparisons range from nationality and language to money and food security. For instance, only 9 out of the 100 villagers speak English; 21 speak a Chinese dialect.

The illustrations are quite stunning with bold colours and show a diversity of able-bodied adults and children throughout the book (although I might have seen a couple of walking canes- the pictures do not focus heavily on detail) as indicated by skin colour and clothing.

I found the facts very interesting myself and think this book would have to be one of the best ways to help children to understand that their experiences are just one of many ways that people are living in the world. There is not one way to be.

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Photo of the front cover of ‘Sex is a Funny Word. A book about bodies, feelings and you’ by Cory Silverberg and Fiona Smyth.The background is purple with a brick pattern representing the wall of a house. In the top half is the title of the book ‘Sex is a Funny Word’ in yellow block print, outlined in black, on a rounded square-shaped sign with red background. The sign is flush with the wall and directly above a rectangular window (with green background and pink curtains drawn to the sides). Four children are reaching up out of the window smiling. On the left-hand side, in the open window, is a child with an orange shirt, blue hair and light purple coloured skin (Omar). Omar’s right arm is raised in the air, his crutch is leaning against him and his left hand is resting on the window sill. To Omar’s left is a child with blue skin and shoulder-length straight black hair (Mimi). Mimi is wearing a red shirt and her left arm is raised in the air. To Mimi’s left is Zai, Zai has dark purple skin and hair. Zai is wearing a striped red and orange shirt with a green cardigan. Zai is resting both hands on the window sill. To Zai’s left is Cooper, Cooper is wearing a yellow shirt with a cat print. Cooper is wearing glasses and has red curly hair and freckles. Both Cooper’s arms are raised in the air. Omar, Mimi, Zai and Cooper are all smiling. In the bottom right-hand corner of the page are the words ‘A BOOK ABOUT BODIES, FEELINGS, AND YOU’ in white print on a red background. In the top right-hand corner of the page are the right side of two windows, one on top of the other with green backgrounds. On the window sill of the lower window is a pot plant containing two pink flowers and the upper window has green curtains.

This book takes four main characters (Omar, Mimi, Zai and Cooper) on a journey of discovery about their bodies, their rights, their preferred gender expression and their gender identity. The characters are diverse in appearance, gender and opinions. The only sexual activity covered in this book is masturbation, mostly referred to as “Touching Yourself.”

‘Sex is a Funny Word’ is LGBTIQ inclusive.

“Most boys are born with a penis and scrotum, and most girls are born with a vulva, vagina, and clitoris. But having a penis isn’t what makes you a boy. Having a vulva isn’t what makes you a girl. The truth is much more interesting than that!”

This book is also inclusive of people with disabilities. One of the four main characters has a visible disability and other characters pictured in the book also have visible disabilities.

What is also good about this book is that it also shows a variety of pictures of different looking “middle parts”. We don’t all look the same and the appearance of our “middle parts” changes with age. This is likely to be reassuring to some children or at least prepares them for change.

This is an excellent book to help children be accepting of differences in bodies, gender expression and gender identity. It also encourages further discussion by posing age -appropriate questions to the reader.

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Photo of the front cover of ‘Our World Bardi Jaawi, Life at Ardiyooloon’. One Arm Point Remote Community School. The background colour is bright yellow, on which are painted simple dark yellow flowers.Taking up most of the centre of the front cover is a rough- edged circle of dark blue with a continuation of the painted flowers but in a lighter blue colour. In the centre of the circle, in large capital letters of yellow are the words ‘OUR WORLD’. On a line underneath in smaller more creative print (black print with thick yellow line containing black dots down the straight length of each letter) is the text ‘BARDI JAAWI’. Underneath this in smaller print again but the same style as the line above are the words ‘LIFE AT ARDIYOOLOON’. Finally, underneath this line in plain black capital letters of much smaller print is ‘ONE ARM POINT REMOTE COMMUNITY SCHOOL’. Various sea creatures inclusive of crabs, fish and turtles are simply sketched in a child-like way, in black, at the bottom of the circle under the text. At the top of the circle, above the text, partly extending into the yellow background, is a simply sketched boat with a motor. In the boat are three characters, in black and grey, fishing with fishing rods. Fish are attached to oversized hooks on two of the lines at least. A bird perches on the edge of the boat. In the top right hand corner of the page is a brown circular sticker with the words ‘THE CHILDREN’S BOOK COUNCIL OF AUSTRALIA, SHORT-LISTED BOOK’

This book documents activities undertaken by the children of One Arm Point Remote Community School (Western Australia) as part of the One Arm Point Culture Program. The program was initiated in 2008 to “find ways to pass on their knowledge and ensure that Bardi Jaawi traditional culture and language was kept alive for future generations”.

This book is beautifully designed by Tracey Gibbs. It includes photographs, drawings and recounts by the children of their experiences participating in various cultural activities from fishing and crabbing to looking for bush onions.

Clear, step-by-step directions with accompanying photos are provided throughout the book for some of the activities such as ‘Cooking Pandanus’ and ‘How to make a bough shelter’ in a recipe-like format. However, it is recommended that the reader does not repeat these activities without adult supervision and checking that they do not contravene local law (the Bardi Jaawi have Native Title over their land, sea, reef and islands).

Traditional stories and words (along with guidelines for pronunciation) are also shared in this very thorough book for children on the Bardi Jaawi culture.

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Photo of the front page of the book ‘How Many Days to America? A Thanksgiving Story’ by Eve Bunting. The front cover has a pale yellow border about 1cm thick. At the top of the page are the words ‘How Many Days to America?’ in large black print. Underneath are the words ‘A Thanksgiving Story’ in smaller black print. The text is justified to the right. To the left of the text are several pale yellow ropes extending up next to a light brown mast of a small wooden boat. Part of one end of the boat is seen below the text, containing people all standing closely together. They look as if they could topple over the side of the boat easily in poor weather. There are two children nearest the edge of the boat, central to the front page. The girl in a pale pink dress, with a white shirt underneath, looks up at the boy in the collared white shirt. Behind the children stands a man and a woman both with serious expressions. The woman is wearing a bright pink long-sleeve top, blue shall and green skirt. The man is holding onto one of the ropes and is carrying a small sack on his left shoulder with the other arm. He is wearing a white-collared shirt, brown trousers and brown wide-brimmed hat. The sky is pale blue and the water appears choppy in shades of blue, purple and white.

Although it was published in 1988, this book is very relevant today. The story is narrated by a child, who’s family, after being visited by soldiers, needs to flee their home country so quickly that they take no possessions besides the clothes on their backs and jewellery to be traded for safety.

Their journey on a small, dilapidated boat, with other people seeking asylum, is harrowing. As each obstacle confronts them, the child’s parents reassure their children that they will soon reach freedom. Eventually, they reach the shores of America and are warmly welcomed with a feast to celebrate Thanksgiving.

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Photo of the front cover of the book ‘My Brother Martin: A sister remembers. Growing up with the Rev. Dr. Martin Luther King JR.’ By Christine King Farris. The background of the book is pale grey. The words ‘My Brother’ are in the top right corner, in lower case, in such a way that each letter appears as a product of rough colouring-in (in black) of a small uneven square and the uncoloured part forms each letter. Underneath ‘My Brother’ is the name ‘Martin’ in red block capital letters outlined in black. To the left of the page is a large head portrait of the Rev. Dr. Martin Luther King JR. The head portrait is a side profile and it is a slightly darker grey colour than the background and appears almost as a shadow. He is looking slightly upwards with his hand in a fist against his chin, which he holds between his thumb and forefinger. He has a neat moustache and the top of his white collar can be seen at the bottom of the page. To the left of the head portrait is a small blue square with rough edges, inside of which can be seen a young girl with her hair in a plait, tied up with a long, thick bright pink bow. The girl is wearing a bright yellow top. She is smiling and looking up into the eyes of the Rev. Dr. Martin Luther King JR. side profile. Below the girl are the words ‘A sister remembers’ in blue and below that in smaller print is ‘Growing up with the Rev. Dr. Martin Luther King JR.’ At the very bottom of the front cover, justified to the right, in red print, is the text ‘NAACP IMAGE AWARD WINNER. A CHILD MAGAZINE BEST BOOK OF THE YEAR’

This book is beautiful. It is beautiful for it’s illustrations, it’s message and it’s celebration of family.

It is narrated by Christine, Dr Martin Luther King JR.’s (M.L.) older sister. Christine recounts innocent childhood pranks, which are beautifully illustrated including the priceless expressions on the faces of their adult targets. However, their innocence is tainted when neighbourhood friends tell them they are not allowed to play with them because they are “negroes”.

The realities of racism to which they had been mostly shielded from were described and explained that day by their mother (Mother Dear). Christine and their siblings were given an excellent education on how to speak up for themselves, with the examples that their father gave when regaling them of tales of his day over the evening meal. On the day of rejection by the neighbourhood children, M.L. was heard by Christine to say to his mother “Mother Dear, one day I’m going to turn this world upside down.”

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Photo of the front cover of the book ‘Nelson Mandela’ by Kadir Nelson. A head portrait of Nelson Mandela covers the entire front page, which has a reddish black background. He has short thick white hair perhaps an inch long all over and cleanly shaven face. His brown skin has warm orange red undertones. His face is illuminated by bright light, which reflects mostly down the centre line of his face. Several deep, long wrinkles line his forehead. Fine and feathery wrinkles are under his eyes. His thick red lips as neither turned up nor down. However, deep crevices either side of his mouth and nose may indicate an expression that relies on slightly raised cheeks. His shirt collar is bright white with straight edges with the top of his black jacket difficult to see against the dark background.

I find it hard to appreciate this book with a fresh perspective because I have read ‘Nelson Mandela: The Long Walk to Freedom’. This children’s book manages to simplify his very eventful life into a story suitable for children. However, you don’t really get to know the man like you do in ‘The Long Walk to Freedom’. His character has to be imagined from his deeds, which were exceptional.

Mandela’s childhood and his experiences with the chief and elders are a wonderful introduction to the book. This book briefly covers his studies and work as a lawyer defending people who had been unjustly treated, his life as an organised activist, in subterfuge, during imprisonment and finally when he was released from prison a free man and true leader. It’s a fair introduction to apartheid and one of the key figures in it’s dismantling.

 

 

 

 

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.