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.

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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.

Autistic Culture for Beginners

Introduction:

In order to work with and fully appreciate autistic people it is necessary to understand and accept autistic people’s culture and rights. A thorough understanding of disability generally, is also necessary to achieve this.

Forget everything you have learned from mainstream media and any non-disabled people in your life. Disability is not what you think it is. Autistic people are not who you think we are. If you read the following articles* with trust for the words of disabled people and willingness to challenge your prior understanding, you will benefit greatly (as will we).

You can expect to feel discomfort as you recognise the harm you may have caused in the past. We have all made ableist mistakes due to being exposed to beliefs/ values/ norms that have originated from an ableist society. We can only be better people if we accept and prevent repetition of our mistakes.

*This document contains mostly articles that I have read and shared over the past two years on social media plus some that I searched for directly, to give a more complete understanding. I’m sure I have missed some areas of learning and skimped on others so please feel free to share articles that you think should be included in this document and/or provide feedback (only if you are #ActuallyAutistic yourself).

Contents Table:

You will not be able to access the articles from the contents section so please scroll below it for article description and links.

Essentials: 

Social Model of Disability

What is Ableism and Abled Privilege?

Autistic Hoya’s Brief Abled Privilege Checklist. By Lydia X. Z. Brown

Microaggressions: Power, Privilege and Everyday Life

How to Fight Ableism as a Nondisabled Person

Autistic Culture and Lived Experience

Autistic Culture: A Primer. By Erin Human

Understanding the Spectrum. By Rebecca Burgess

Neurodiversity: Some Basic Terms and Definitions. By Nick Walker

Identity Politics and Persuasion. By Rachel McNamara

What these 7 Brilliant Activists Love most about being Autistic. By Katie Dupere

15 Things You Should Never Say to an Autistic. By Lydia X. Z. Brown

How Autism Warrior Parents Harm Autistic Kids. Shannon Des Roches Rosa

Is it Really Inclusion you want? By Michelle Sutton

Blue Lights Won’t Help Me. By Michelle Sutton

Autistic Burnout/ Regression/ Inertia – It’s not just me. By Jax Blunt

Ableist Language

Introduction to Disability Terminology. By Corinne Duyvis and Kayla Whaley

Violence in Language: Circling Back to Linguistic Ableism. By Lydia X. Z. Brown

Disease is Not a Metaphor. By Cyree Jarelle Johnson

It’s Time to Retire “Able-Bodied”. By Lauren Smith – Donohoe

Against “mental age” The Small Places. By Lucy Series

We’re Not Here for Your Inspiration. By Stella Young

Emotions

Why can’t we all get along?!? By Leah Kelley

No, We Won’t Calm Down – Tone Policing is Just Another Way to Protect Privilege. By Robot Hugs

“Caregiver burnout”. By Beth Ryan

Intersectionality

Revisiting #DisabilityTooWhite One Year Later (Hint: There’s Still A Problem). By Denarii Monroe

Autistic While Black: The Erasure of Blacks from Histories of Autism. Mrs Kerima Cevik

Why Intersectionality Can’t Wait. By Kimberle Crenshaw

How Can We All Do Better At Intersectionality. By Jax Jacki Brown

Other (still very useful):

Claiming superiority via intelligence/ internalised ableism

4 Ways That ‘ Our Minds Are Fine’ Is Ableist Toward Cognitively Disabled Folks. By Cara Liebowitz

Fighting My Internalization of the Hierarchy of Disability. By Kim Sauder

Representation

When Parents Overshare their Children’s Disability. By Carly Findlay

The Protest and Power of Disability Activism: ‘It’s not as sexy as gay rights or climate change’. By Luke Buckmaster

Disability and Hollywood, a Sordid Affair. By Maysoon Zayid

Hollywood’s Disfigured Villain Trope Does Major Harm to Disabled People. By Alaina Leary

I Fear for My Fellow Autistic People: On Media Misrepresentation. By Kit Mead

Violence and Mental Illness: Is media overplaying link? By Ashley Welch

Dolls with Disabilities Escape the Toy Hospital, Go Mainstream. By Neda Ulaby

Julia the Autistic Muppet finally joins her friends on TV: A quick run-down of what I loved about Julia, and what has me concerned. By Briannon Lee

On ‘Labels’

Labels aren’t Just for Jars: Give Kids the Words to Understand their Lives. By Kim Sauder

Accessibility and Accommodations

This is what accessibility looks like (Part 2). By Katie Rose Pryal

Facilitated Communication

Facilitated Communication; from the inside. By Marlena Katena

Tim. By Tim Chan

No, I’m Not a Horse: A Refutation of the Clever Hans Comparison to Autistic Typers. By Ido Kedar

Therapy/ Charity

What’s the Problem with Whole Body Listening? By PACLA (Parenting Autistic Children with Love and Acceptance)

Taking a Deeper Look at Whole Body Listening: It’s a Tool Not a Rule. By Elizabeth Sautter

‘Real Science’ and ABA. By Ally Grace

I Abused Children for a Living. By Birdmad Girl

Autism and Trauma: My Story. By Chloe Rothschild

“Charity” That Harms. By We Always Liked Picasso Anyway

When Awareness is Not Enough. By Vilissa Thompson

Policy and Disabled People

Election policy platform “Building a Disability Inclusive Australia”. By Australian Cross Disability Alliance

Disability advocates add to calls to suspend Centrelink debt recovery system. By Christopher Knaus

Prisoners are excluded from the NDIS – here’s why it matters. By Jesse Young and Stuart Kinner

Australia has kept disabled migrant children out for decades – it’s time we gave them protection instead. By Ruth Balint

Education

“Should I send my child to a special school?” Our path to inclusion. By Catia Malaquis

Pauline Hanson is wrong – we need to include children with disability in regular classrooms. By Linda J. Graham and Kate de Bruin

Our education is not a “lesson” for your non-autistic child. By Julia Pillai

Victorian schools not inclusive for students with disabilities: report. By Josh Gordon

Report sparks concern about how schools support students with disabilities. By Peter Walker

‘It is a lonely experience’: the students barred from camps and excursions. By Henrietta Cook and Timna Jacks

Disability advocate calls for end of segregated classes for disabled students in ACT schools. By Andrew Brown

Employment

Man who applied for 400 jobs finally gets interviews after hiding his disability. By Ashitha Nagesh

Underpaid disabled workers to claim compensation from Government after Federal Court win. By Joanna Crothers

Disabled MP forced to miss Commons debates because he has nowhere to sit.

By John Pring

How China trumps Australia when it comes to supporting disabled workers. By

Karen Fisher

Health care

Getting it right: What people with disabilities want from their health care. By Carly Findlay

The needless deaths of people with intellectual disability must be urgently addressed. By Professor John McMillan and Steve Kinmond

Fine, Let’s Talk About The Autism Life Expectancy Study. By FeministAspie

Abuse, violence, eugenics, euthanasia and murder

Four Corners: Can the NDIS prevent abuse of people with disability? By Carmel Laragy

Abuse of people with disability requires Royal Commission, support services argue. By Alison Branley

It’s time to fix the power dynamics that allowed the abuse of people with disability. By Leanne Dowse

Violence, Disability, and the Lessons of Sagamihara. By David Perry

The murder of disabled children can never by justified. By Carly Findlay

Shervices. By Un-Boxed Brain

I’m pro-choice, but abortion can’t be the only ‘sensible’ option when it comes

to disability. By Naomi Chainey

Better off dead? What Peter Singer doesn’t get about disability and euthanasia. By Craig Wallace

Disability – a fate worse than death? By Stella Young

Reading starts here:

Social Model of Disability

http://www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/social-model/
It is essential to have an understanding of the Social Model of Disability, in order to truly understand the rights of disabled people. Please click on the above link to for a definition and links to further resources.
“The social model of disability is now the internationally recognised way to view and address ‘disability’. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) marks the official paradigm shift in attitudes towards people with disability and approaches to disability concerns”(from http://www.pwd.org.au/student-section/the-social-model-of-disability.html )

What is Ableism and Abled Privilege?

Autistic Hoya’s Brief Abled Privilege Checklist. By Lydia X. Z. Brown
TW: Ableist murder, suicide, everyday ableism
https://autistichoya.files.wordpress.com/2016/03/brief-abled-privilege-checklist-mar-2016.pdf
Lydia X. Z. Brown is a writer, dreamer, activist/organizer, and speaker/educator. Some of the many marginal identities/experiences they are include autistic and multiply otherwise neurodivergent and disabled, queer, asexual-spectrum, genderqueer/non-binary and sometimes read as feminine, and transracially and transnationally adopted east asian person of color from China (into a white adoptive family).
Lydia does a lot of varied work in grassroots organizing, public policy advocacy, and writing focused on disability justice, intersectionality, and activism. Right now, they are the chairperson of the Massachusetts Developmental Disabilities Council while completing law school. Lydia is an editor of ‘All The Weight Of Our Dreams: On living racialized autism’ the first-ever anthology by autistics of color.

I highly recommend this excellent concise explanation of ableism and abled privilege.

Microaggressions: Power, Privilege and Everyday life
http://www.microaggressions.com/about
The ‘About’ page of this online project provides a brief description and history of the term ‘microaggression’. On other pages of the website it lists people’s experiences of everyday microaggressions and their impact.

How to Fight Ableism as a Nondisabled Person
TW: examples of ableism
http://www.wikihow.com/Fight-Ableism-as-a-Nondisabled-Person
This article might be a difficult read because it contains lots of advertisements (some advertisements flash/ move) but does give a good general insight into how non-disabled can help challenge ableism.

Autistic Culture and Lived Experience

Autistic Culture: A Primer. By Erin Human
TW: Applied Behaviour Analysis (ABA therapy)
Autistic Culture: A Primer
Erin’s real name is Erin Human. Erin is Autistic, an Art Director for Autism Women’s Network and a founding co-Director of Autistic Families International.

Erin’s article covers the following areas briefly: Identity First language, Neurodiversity, Applied Behavior Analysis (ABA) therapies and Functioning labels.
There is also a link to an ‘Autistic Resources’ page that contains useful websites and blogs.

Understanding the Spectrum. By Rebecca Burgess
http://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/
Rebecca Burgess is a freelance comic artist and illustrator living in the UK.

This comic strip is an excellent explanation of the autism spectrum correcting common misconceptions.

Neurodiversity: Some basic terms and definitions. By Nick Walker
http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/
Nick Walker is an Autistic author, educator, speaker, transdisciplinary scholar, and aikido teacher.

Learn the basics of neurodiversity from this blog post. Further information can be obtained from other posts by Nick Walker on this blog site.

Identity Politics and Persuasion. By Rachel McNamara
TW: Differing perspectives on ‘identity politics’
https://endautismstigma.wordpress.com/2017/05/25/identity-politics-and-persuasion/
Rachel McNamara is an Autistic blogger and Board Director of Amaze.

This blog post documents a presentation that explains what identity politics is, why it exists and how shared and collective identities can be persuasive in encouraging support for a social movement.

What These 7 Brilliant Activists Love Most About Being Autistic. By Katie Dupere
http://mashable.com/2017/04/23/autistic-activists-pride/#pHYH8kIxCqqy
Katie Dupere is a writer based in New York City. She is a social good reporter at Mashable covering social impact, activism and identities.
This article contains flashing/ moving advertisements, which may make it harder to read.

A highly recommended read by some of the world’s most well-known Autistic activists.

15 Things You Should Never Say To An Autistic. By Lydia X. Z. Brown
http://www.autistichoya.com/2012/02/15-things-you-should-never-say-to.html
Lydia X. Z. Brown is a writer, dreamer, activist/organizer, and speaker/educator. Some of the many marginal identities/experiences they are include autistic and multiply otherwise neurodivergent and disabled, queer, asexual-spectrum, genderqueer/non-binary and sometimes read as feminine, and transracially and transnationally adopted east asian person of color from China (into a white adoptive family).

If you want to avoid committing unintentional microaggressions against Autistic people when you are talking them, this will help.

How Autism Warrior Parents Harm Autistic Kids. By Shannon Des Roches Rosa
TW:
This article includes discussion of many ableist topics such as rhetoric of burden and cure, dangerous and abusive therapies and justifying filicide of autistic children.
https://theestablishment.co/how-autism-warrior-parents-harm-autistic-kids-6700b8bf6677
Shannon Des Roches Rosa is a writer, editor and mother of an autistic adult.  

Is It Really Inclusion You Want? By Michelle Sutton Writes
Is it really inclusion you want?
Michelle is an Australian writer, speaker, and neurodiversity rights advocate, with a background in education and psychology. Michelle is also Autistic.

Michelle’s blog post covers a personal example of how “non-autistic people really don’t understand the effort we put in to be in their spaces and involved in their activities” and encourages non-autistic people to ask autistic people what they need” for inclusion/ access.

Blue Lights Won’t Help Me. By Michelle Sutton Writes
TW: ableism in awareness-raising as it relates to autism awareness month
blue lights won’t help me
Michelle is an Australian writer, speaker, and neurodiversity rights advocate, with a background in education and psychology. Michelle is also Autistic.

This blog post explains the generalised frustration (and other emotions) that Autistic people feel when ‘Autism Awareness Month’ happens each year, when we see people promoting awareness that is not helpful and why.

Autistic Burnout/ Regression/ Inertia – It’s Not Just Me. By Jax Blunt
http://liveotherwise.co.uk/makingitup/2017/04/27/autistic-burnout-regression-inertia-its-not-just-me/
Jax Blunt is an Autistic blogger.

This blog post also contains links to further information on the topics of Autistic Burnout, Regression and Inertia.

Ableist Language

How we talk about disability, including the choice of words, reflects and influences society’s ideas about disabled people, which in turn, influences our actions towards disabled people. Disabled people are routinely devalued by language, which results in more obvious discrimination and abuse.

Introduction to Disability Terminology. By Corinne Duyvis and Kayla Whaley
TW: “uncensored use of many different kinds of ableist language and slurs, as well as example sentences they might be used in” (inclusive of swearing)
http://disabilityinkidlit.com/2016/07/08/introduction-to-disability-terminology/
Corinne Duyvis is a writer of sci-fi and fantasy. ‘Otherbound’, her YA fantasy debut, received four starred reviews. ‘On the Edge of Gone’, her second YA, is about an autistic girl during the apocalypse and received three starred reviews. Her most recent novel is ‘Guardians of the Galaxy: Collect Them All’, an original novel set in the Marvel Universe.
Kayla Whaley is Senior Editor at Disability in Kidlit and a graduate of the Clarion Writers’ Workshop. Her work has appeared at The Toast, The Establishment, Uncanny Magazine, and in the upcoming anthology Feminism for the Real World.

This article is not autism-specific but the terminology is often applicable to Autistic people. It is also targeted to writers but is an excellent resource for everyone. It covers: Identity First language, Abled vs. non-disabled, disabled people as nouns, special needs and other euphemisms, wheelchair-bound and other judgemental terms, functioning labels, adapting language use, ableist language (contains some swear words), disability as metaphor, purposeful use of ableist terminology, internalized ableism and intentional ableism.

Violence in Language: Circling Back to Linguistic Ableism. By Lydia X. Z. Brown
TW: use of many different kinds of ableist language and slurs, as well as example sentences they might be used in
http://www.autistichoya.com/2014/02/violence-linguistic-ableism.html

This document is an excellent comprehensive explanation and list of ableist language and alternatives. It does contain swearing but with a warning before the words are listed as examples of less-articulate and therefore inclusive (not everyone has an excellent command of language) alternatives to ableist slurs.

Disease is Not A Metaphor. By Cyree Jarelle Johnson
TW: Ableist metaphors
Cyrée Jarelle Johnson is a Black Femme dyke writer, zinester, and poet. Cyrée Jarelle is committed to relocating Femme culture from margin to center using writing, non-formal education and communal publication. Ze remains a crippled Jersey Grrl abroad; in hir swollen feet ze is a wanderer, but hir heart is in the foodcourt at the Woodbridge Mall.

This is an excellent poetic piece of writing on the ableist use of disability as a metaphor.

It’s Time to Retire “Able-Bodied”. By Lauren Smith- Donohoe
It’s Time to Retire “Able-Bodied”
Lauren Smith-Donohoe is a disabled blogger.

This blog post provides a very good explanation of why we should use the term ‘abled’ instead of ‘able-bodied’ to describe non-disabled people.

Against “mental age” The Small Places. By Lucy Series
https://thesmallplaces.wordpress.com/2014/02/17/against-mental-age/
Lucy Series is a researcher at the Centre for Health and Social Care Law at Cardiff Law School. Lucy’s research interests include legal capacity and human rights, especially in health and social care services. She is currently working on a project about the Court of Protection.

An excellent in-depth article from an academic and social perspective. It discusses how using the term ‘mental age’ encourages ableist infantilizing of disabled people and its’ likely impact on rights including justice.

We’re not here for your inspiration. By Stella Young
http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm
Stella Young (24 February 1982 – 6 December 2014) was an Australian comedian, journalist and disability rights activist.

The original essay on inspiration porn. It has global recognition. A must read.

Emotions

Why can’t we all get along?!? By Leah Kelley
Why can’t we all get along?!?
Leah Kelley is a K–12 Special Education Resource Teacher, a parent of an Autistic son, and an experienced primary teacher.

On misrepresenting ableism as advocacy. Although, this article centres on ongoing controversy with ‘The Mighty’, it provides a very good personal account of how non-autistic people expect their feelings and opinions to be equally as important (or more so) as the rights (and experience) of autistic people.

No, We Won’t Calm Down – Tone Policing is Just Another Way to Protect Privilege. By Robot Hugs
http://everydayfeminism.com/2015/12/tone-policing-and-privilege/
An excellent comic strip on why you should not criticize emotional reactions to oppressive systems and the people who unknowingly or knowingly support them, by marginalized people.
This article contains flashing/ moving advertisements, which may make it harder to read. This article also contains swearing in the context of emotional reactions to oppression.

“Caregiver burnout” By Beth Ryan
TW: This article mentions several ableist things parents of autistic children often think, say and do
“caregiver burnout”

This excellent blog post highlights the ableism implicit in the term ‘caregiver burnout’ by explaining how it is important that the person who is cared for is not seen as the cause for burnout. It provides an excellent list of coping strategies.

Intersectionality

Revisiting #DisabilityTooWhite One Year Later (Hint: There’s Still A Problem). By Denarii Monroe
TW: Racism and ableism, mention of police violence and brutality
https://theestablishment.co/revisiting-disabilitytoowhite-one-year-later-hint-theres-still-a-problem-229aadcf1852
Vilisa Thompson is disabled woman of color, womanist, creator and founder of Ramp Your Voice, disability rights consultant and advocate, macro licensed master social worker and writer.

A very good interview with Vilissa Thompson discussing the poor representation of people of colour in the disability community.

Autistic While Black: The Erasure of Blacks From Histories of Autism
TW: Slavery, racist exclusion, ableist and racist assumptions of lack of competence and talent
http://intersecteddisability.blogspot.com.au/2016/01/autistic-while-black-erasure-of-blacks.html
Mrs Kerima Cevik is a disabled blogger, activist, editor, writer and researcher.

Why Intersectionality Can’t Wait. By Kimberle Crenshaw
TW: intersectional racism and sexism in the workplace, brief mention of other examples of intersecting identities and their activism
https://www.washingtonpost.com/news/in-theory/wp/2015/09/24/why-intersectionality-cant-wait/
Read this for the meaning and history of intersectionality as a word (the lived experience of it has always existed).
Kimberle Crenshaw is an American civil rights advocate and a leading scholar of the field known as critical race theory. She is a full professor at the UCLA School of Law and Columbia Law School, where she specializes in race and gender issues. She is known for the introduction and development of intersectional theory, the study of how overlapping or intersecting social identities, particularly minority identities, relate to systems and structures of oppression, domination, or discrimination (copied directly from Wikipedia)

How Can We All Do Better By Our Autistic Girls? By Thinking Person’s Guide to Autism
TW: sexism and ableism intersected, misdiagnosis and rape
http://www.thinkingautismguide.com/2016/04/how-can-we-all-do-better-by-our.html
Emily Paige Ballou is an autistic theater professional and writer based in New York. She was diagnosed with Asperger’s syndrome as a young adult.
Olley Edwards is an autistic British writer and filmmaker, and parent to a neurodivergent family of three girls. She was (finally) formally diagnosed with autism herself only recently.
Patricia George is an autistic Canadian writer, photographer, and artist. She was diagnosed with autism in her early 40s after a lifetime of being misdiagnosed with other conditions.
Christine Langager is a writer, homeschooler, volunteer with an autism service dog organization, and a retired athlete. She is also an adult-diagnosed autistic parent to two autistic boys, and spouse to a U.S. Marine. She lives in Southern California.
Siobhan Travers (Nez Perce) is an autistic writer, advocate, teacher, parent to an autistic daughter, and was diagnosed with autism herself as a child. She splits her time between Lapwai, Idaho and Northern California. Though considered “minimally verbal,” she speaks five languages.

“Five women talk about about the under-recognition of autistic girls, the long- and short-term effects of going without supports and accommodations, and what autistic girls and actually need to succeed and be happy.”

Real Talk: We Need to Get Better At Intersectionality. By Jax Jacki Brown
TW: A personal account of ableism, sexism and homophobia
Jax Jacki Brown is a disability and LGBTIQ rights activist, writer, public speaker and disability sexuality educator.
https://www.vwt.org.au/real-talk-need-get-better-intersectionality/

A personal account of the need for recognition of disability existing within multiple layers of identity.

Claiming superiority via intelligence/ internalised ableism

4 Ways That ‘Our Minds Are Fine’ Is Ableist Toward Cognitively Disabled Folks. By Cara Liebowitz
http://everydayfeminism.com/2016/02/ableism-cognitive-disabilities/
Cara Liebowitz is a multiply-disabled activist, blogger and writer currently pursuing her M.A in Disability Studies.

Excellent detailed article explaining the impact of ableism from people with physical disabilities against those with cognitive disabilities. Contains swearing.

Fighting my internalization of the hierarchy of disability. By Kim Sauder
Fighting My Internalization of the Hierarchy of Disability
Kim Sauder is an Autistic blogger with left side hemiplegic cerebral palsy. They have a MA in Disability Studies and a BA (Hons.) in Women & Gender Studies and they have a PhD student in Critical Disability Studies.

An excellent personal example of internalised ableism.

Representation

When parents overshare their children’s disability. By Carly Findlay
TW: Accounts of ableism by parents including burden rhetoric and privacy violations
http://www.smh.com.au/lifestyle/news-and-views/opinion/when-parents-overshare-their-childrens-disability-20150724-gijtw6.html
Carly Findlay is an Australian blogger, writer, speaker and appearance activist.

There are multiple concerns when parents’ overshare their children’s disability. Carly Findlay discusses this topic from a disabled person’s perspective.

The protest and power of disability activism: ‘It’s not as sexy as gay rights or climate change’. By Luke Buckmaster
https://www.theguardian.com/society/2017/jul/17/the-protest-and-power-of-disability-activism-its-not-as-sexy-as-gay-rights-or-climate-change

This article promotes, Defiant Lives, a new Australian documentary, which “traces the history of disability rights at home and abroad, with the aim of challenging the movement’s erasure”. Several disabled people discuss representation of disabled people with relation to this documentary compared to mainstream ableist representation. It also includes valid criticism inclusive of the lack of intersectionality with regard to people of colour and an attempt to invalidate that criticism by the director of the documentary. The article primarily features Dr George Taleporos. It contains one swear word (an emotional reaction to an ableist celebrity).

Dr George Taleporos is a disability rights advocate with expertise in human rights, equity and disability service reform. He uses a motorised wheelchair and a ventilator. He has a PhD in psychology and an honours degree in sociology. He is the manager of the Youth Disability Advocacy Service and a sessional lecturer at Deakin University.

Disability and Hollywood, a Sordid Affair. By Maysoon Zayid
TW: Ableist story themes for disabled people and abled people ‘cripping up’ as disabled characters
http://www.womensmediacenter.com/feature/entry/disability-and-hollywood-a-sordid-affair
Maysoon Zayid is a comedian, tap dancer, and disability advocate. She is the co-producer of the New York Arab American Comedy Festival and the Muslim Funny Fest. Maysoon had the most viewed TED Talk of 2014. She is the host of the web series Advice You Don’t Want to Hear and is currently developing a comedy series based on her life titled “If I Cancan.”

Excellent article about how Hollywood misrepresents and excludes us.

Hollywood’s Disfigured Villain Trope Does Major Harm to Disabled People. By Alaina Leary
TW: Ableist character stereotypes for visibly disabled people and abled people ‘cripping up’ as disabled characters
http://www.teenvogue.com/story/disfigured-villains-dr-poison-wonder-woman
Alaina Leary is a book and magazine editor, a publicist, and a social media assistant for We Need Diverse Books.

What message is Hollywood promoting when disabled characters (particularly those with facial differences) are cast as villains?! This article exposes a harmful stereotype.

I fear for My Fellow Autistic People: On Media Misrepresentation. By Kit Mead
TW: Murder and murder ideation of disabled people, media representation of autistic people as violent and/or burdens and privacy violations of disabled people
https://kpagination.wordpress.com/2016/07/10/i-fear-for-my-fellow-autistic-people-on-media-misrepresentation/
Kit Mead is an Autistic, queer, non-binary trans person with mental health disabilities and (probably) Ehlers-Danlos Syndrome (EDS). Kit is also a disability rights advocate.

This article focuses on the media misrepresenting autistic people as violent.

Violence and mental illness: Is media overplaying link? By Ashley Welch
TW: Mass shootings, violence, ableist media reports
http://www.cbsnews.com/news/too-many-news-stories-wrongly-link-violence-with-mental-illness/
The answer to the question, which is posed in the title of the article, is a resounding ‘Yes’.
This article contains flashing/ moving advertisements, which may make it harder to read.

Dolls With Disabilities Escape The Toy Hospital, Go Mainstream. By Neda Ulaby
http://kcur.org/post/dolls-disabilities-escape-toy-hospital-go-mainstream#stream/0
This article is about disability representation in toys. Rebecca Cokley is featured in this article.
Rebecca Cokley is a 2nd generation little person (both of her parents have dwarfism) and is the mother of two kids, both with Achondroplasia, too. Rebecca runs the National Council on Disability an independent federal agency that advises Congress, The White House, other government agencies, and the public on all issues impacting Americans with Disabilities.

Julia the Autistic muppet finally joins her friends on TV: A quick run-down of what I loved about Julia, and what has me concerned. By Briannon Lee
Julia the autistic muppet finally joins her friends on TV
Briannon is a Queer, neurodivergent changemaker from Australia. A social worker with a biomedical science background, Briannon’s work has always been in social justice organisations with experience in non-profit management, innovation, research, community campaigns and direct support with marginalised people. She enjoys facilitation, consulting, co-creating and writing.
Briannon is Director of community groups Autistic Families International and NeuroDiversity Connect and a writer at Respectfully Connected.

An excellent analysis of how media representation can get some things right and some things wrong.

On ‘labels’

Labels aren’t Just for Jars: Give Kids the Words to Understand their Lives. By Kim Sauder
TW: Personal experience of being bullied
Labels aren’t Just for Jars: Give Kids the Words to Understand their Lives
Kim Sauder is an Autistic blogger with left side hemiplegic cerebral palsy. They have a MA in Disability Studies and a BA (Hons.) in Women & Gender Studies and they have a PhD student in Critical Disability Studies.

You might have heard that popular but unfortunate phrase “Labels are for jam jars, not kids”. This article debunks the phrase and explains why it actually creates harm for disabled people (includes kids).

Accessibility and Accommodations

This is what accessibility looks like (Part 2). By Katie Rose Pryal
https://katieroseguestpryal.com/2016/04/05/this-is-what-accessibility-looks-like-part-2/
Katie Rose Pryal is a novelist, freelance journalist, and law professor.

A brief but important comparison of accessibility and accommodations and how accessibility is the better of the two.

Facilitated Communication

Facilitated Communication; from the inside. By Marlena Katena
TW: Ableist language in the opening quote, ableist language and judgement regarding assumed competence for non-speaking disabled people
http://www.abc.net.au/rampup/articles/2012/03/15/3454386.htm
Marlena Katene is a 21-year-old small business owner, motivational speaker and journalism student. Currently she uses communication devices and facilitated communication to assist her to study journalism and build an extensive portfolio interviewing a wide range of people. A passionate disability advocate she has travelled extensively throughout the world and Australia to promote an inclusive and positive life for all people with a disability, regardless of perceived perceptions.

A personal account of the right to communicate.

Tim. By Tim Chan
TW: Ableist assumptions and denial of the means to communicate, internalized ableism, ableism related to intellectual disability by Tim Chan that is not challenged, suicidal ideation
http://ican.network/humans2017/tim/
Tim Chan documents his experiences as a non-speaking person, on the autism spectrum, who has often had his voice denied, especially at school. Tim Chan is an ambassador for ‘I CAN Network’ (Australia).

No, I’m Not a Horse: A Refutation of the Clever Hans Comparison to Autistic Typers. By Ido Kedar
http://idoinautismland.com/?p=473
Ido Kedar is an Autistic blogger and author of the book ‘Ido in Autismland’.

Ido Kedar’s blog post is an excellent response to a specific and terribly ableist critique of facilitated communication.

Therapy/ Charity

What’s the Problem with Whole Body Listening? By PACLA (Parenting Autistic Children with Love and Acceptance)
TW: Ableist assumptions, interpretations and expectations regarding body language
https://autloveaccept.wordpress.com/2015/03/25/whats-the-problem-with-whole-body-listening/
The Whole Body Listening poster is altered to celebrate autistic neurology.

Taking a Deeper Look at Whole Body Listening: It’s a Tool Not a Rule. By Elizabeth Sautter
TW: Still promotes Whole Body Listening but is much better at avoiding ableist assumptions and suggests in some cases that it can be harmful, with advice around changing the environment instead
https://www.socialthinking.com/Articles?name=Whole%20Body%20Listening
Elizabeth Sautter is the co-director/owner of Communication Works. She is a licensed and certified speech-language pathologist. She is experienced in the areas of autism, developmental disabilities, social cognitive deficits, and challenging behaviors and since 2001, has focused most of her career on social cognitive and self-regulation intervention and training.

Even the non-autistic professionals acknowledge the limitations of Whole Body Listening. This article explains some of the limitations.

‘Real Science’ and ABA. By Ally Grace
TW: ABA
http://suburbanautistics.blogspot.com.au/2015/05/real-science-and-aba.html
Ally Grace is a blogger and Autistic mother of four Autistic children

I Abused Children For a Living. By Birdmad Girl
TW: Applied Behavioural Analysis (ABA) explained. Discussion of the history of ABA involves discussion of torture and mention of homophobic ‘therapy’ for gay people
https://madasbirdsblog.wordpress.com/2017/04/03/i-abused-children-for-a-living/?iframe=true&theme_preview=true
Birdmad Girl is a multiply neurodivergent woman who blogs.

 

An excellent piece of writing from an ex- ABA therapist that does well to explain how ABA can harm Autistic children. Contains one swear word as an emotional reaction to an ableist goal that can result harm.

Autism and Trauma: My story. By Chloe Rothschild
TW: Personal account of being traumatised at a camp by the ableist words and actions of trained staff
https://www.autism.com/yld_rothchild_trauma
Chloe Rothschild is a young adult with autism who lives in Ohio with her family. She is a co-editor for the ARI Adults with Autism eBulletin, an advisory board member for the Ohio Center for Autism and Low Incidence (OCALI), and a young leader for the Autistic Global Initiative (AGI).

Chloe’s article is about how a therapeutic camp caused Post Traumatic Stress Disorder (PTSD).

“Charity” That Harms. By We Always Liked Picasso Anyway
http://autistictimestwo.blogspot.com.au/2016/02/charity-that-harms.html
This post explains how not all charities are created equal and how some charities can harm disabled people.

When Awareness is Not Enough. By Vilissa Thompson
http://cdrnys.org/blog/advocacy/when-awareness-is-not-enough/
Vilissa Thompson is disabled woman of color, womanist, creator and founder of Ramp Your Voice, disability rights consultant and advocate, macro licensed master social worker and writer.

An excellent article on why we should be focusing on and using the term, ‘acceptance’ instead of ‘awareness’ with regard to disability.

Policy and Disabled people

This section includes several recent Australian articles that show how policy can disadvantage disabled people.

Election policy platform “Building a Disability Inclusive Australia”. By Australian Cross Disability Alliance
TW: Mention of physical and sexual abuse of disabled people (adults and children), more detail regarding the cruel and inhuman treatment of people (inclusive of disabled people) seeking asylum
http://dpoa.org.au/wp-content/uploads/2016/06/ACDA-Election-Policy-Platform.pdf
The Australian Cross Disability Alliance (ACDA) is an alliance of national disabled people’s organisations (DPOs). The key purpose of ACDA is to promote, protect and advance the human rights and freedoms of people with disability in Australia by working collaboratively on areas of shared interests, purposes and strategic priorities and opportunities.

This is an excellent detailed document that describes “13 policy priorities which will help to shape and strengthen our nation through the realisation of inclusion, equality, respect and human rights for all people with disability.” It was written in advance of the 2016 Australian federal election.

Disability advocates add to calls to suspend Centrelink debt recovery system. By Christopher Knaus
TW: Suicide
https://www.theguardian.com/australia-news/2017/jan/05/disability-advocates-add-to-calls-to-suspend-centrelink-debt-recovery-system

Prisoners are excluded from the NDIS – here’s why it matters. By Jesse Young and Stuart Kinner
TW: Assault, further disadvantage for indigenous disabled people.
http://theconversation.com/prisoners-are-excluded-from-the-ndis-heres-why-it-matters-73912
Jesse Young is a Research Fellow and PhD Candidate, University of Melbourne.
Stuart Kinner is a Professor, Murdoch Childrens Research Institute.

Australia has kept disabled migrant children out for decades – it’s time we gave them protection instead. By Ruth Balint
TW: Nazi concentration camps, institutionalisation of disabled children, burden rhetoric, present day offshore detention centres, physical and sexual assault
http://theconversation.com/australia-has-kept-disabled-migrant-children-out-for-decades-its-time-we-gave-them-protection-instead-73677
Ruth Balint is a senior lecturer in history, UNSW.

Education

Recent Australian articles highlighting and explaining how disabled people are disadvantaged in education.

“Should I send my child to a special school?” Our path to inclusion. By Catia Malaquis
TW: Segregation of disabled students
http://www.startingwithjulius.org.au/should-i-send-my-child-to-a-special-school-ou-path-to-inclusion/
Catia Malaquis is the founder and director of ‘Starting with Julius’. Catia has been recognised nationally and internationally for her work and has spoken at the United Nations in Geneva and at the United Nations in New York about inclusion of people with disability in advertising and media. She was an Australian Human Rights Awards Finalist in 2016 and is a Western Australian of the Year Awards Finalist in 2017.

A personal account of Catia’s path to educational inclusion for her son Julius with links to academic documents and reports.

Pauline Hanson is wrong – we need to include children with disability in regular classrooms. By Linda J. Graham and Kate de Bruin
TW: Segregation of disabled students
http://theconversation.com/pauline-hanson-is-wrong-we-need-to-include-children-with-disability-in-regular-classrooms-79897
Associate Professor Linda J. Graham receives funding from the Australian Research Council (ARC) and the Queensland Government Education Horizons scheme. She leads QUT’s Student Engagement, Learning & Behaviour (#SELB) Research Group and is a Director of All Means All – Australian Alliance for Inclusive Education.
Dr Kate de Bruin receives funding from the Commonwealth Department of Education and Training relating to the Nationally Consistent Collection of Data for Students with Disability.

This article explains how the anecdotal evidence is incorrect re. special education being the best place for disabled kids.

Our education is not a “lesson” for your non-autistic child. By Julia Pillai
TW: Restraint and segregation of disabled students
http://www.smh.com.au/comment/our-education-is-not-a-lesson-for-your-nonautistic-child-20170623-gwx44v.html
Julia Pillai is a politics and fine art student at Monash University, the assistant producer of Represent at SYN Media, and a freelance journalist. Julia is also Autistic.

This article takes a rights-based approach to Pauline Hanson’s ableist comments about disabled children being better off in special schools. The article includes some sarcasm.

Victorian schools not inclusive for students with disabilities: report. By Josh Gordon
TW: Exclusion and segregation of disabled students
http://www.theage.com.au/victoria/victorian-schools-not-inclusive-for-students-with-disabilities-report-20160417-go8d10.html

Report sparks concern about how schools support students with disabilities. By Peter Walker
TW: Exclusion, segregation and restriction (“cage- like” enclosures and physical restraint) of disabled students
http://theconversation.com/report-sparks-concern-about-how-schools-support-students-with-disabilities-78753
Peter Walker is a lecturer in Special Education, Flinders University.

Relates to South Australian schools.

‘It is a lonely experience’: the students barred from camps and excursions. By Henrietta Cook and Timna Jacks
TW: Exclusion of disabled students
http://www.theage.com.au/victoria/it-is-a-lonely-experience-the-students-barred-from-camps-and-excursions-20170529-gwfer5.html

A personal account and impact of being excluded from school activities due to disability.

Disability advocate calls for end of segregated classes for disabled students in ACT schools. By Andrew Brown
TW: Segregation of disabled students
http://www.canberratimes.com.au/act-news/disability-advocate-calls-for-end-of-segregated-classes-for-disabled-students-in-act-schools-20170317-gv0p8c.html

Employment

Recent articles highlighting and explaining how disabled people are disadvantaged in employment.

Man who applied for 400 jobs finally gets interviews after hiding his disability. By Ashitha Nagesh
Man who applied for 400 jobs finally gets interviews after hiding his disability

UK article but could easily happen in Australia. Disability discrimination when applying for employment.

Underpaid disabled workers to claim compensation from Government after Federal Court win. By Joanna Crothers
http://www.abc.net.au/news/2016-12-16/class-action-settlement-intellectual-disability-workers-approved/8126860

An example of exploitation of intellectually disabled people in the workplace.

Disabled MP forced to miss Commons debates because he has nowhere to sit. By John Pring
http://www.disabilitynewsservice.com/disabled-mp-forced-to-miss-commons-debates-because-he-has-nowhere-to-sit/

This is a UK article. It shows that even the most privileged disabled people face inaccessible workplaces and difficulties having timely accommodations put in place. It will be interesting to see if Jordon Steele- John has similar experiences as a wheelchair user in Australia’s federal parliament.

How China trumps Australia when it comes to supporting disabled workers. By Karen Fisher
http://www.smh.com.au/comment/how-china-trumps-australia-when-it-comes-to-supporting-disabled-workers-20170103-gtl7bh.html
Professor Karen Fisher is a disability policy researcher at the Social Policy Research Centre at UNSW.

Health care

Getting it right: What people with disabilities want from their health care. By Carly Findlay
TW: Ableism and ignorance by medical professionals impacting quality of care
http://www.abc.net.au/news/health/2016-12-20/what-people-with-disabilities-want-from-their-health-care/8127416
Carly Findlay is an Australian blogger, writer, speaker and appearance activist.

This article documents personal experiences of health care from several disabled people.

The needless deaths of people with intellectual disability must be urgently addressed. By Professor John McMillan and Steve Kinmond
TW: Discriminatory health care practise, preventable deaths of intellectually disabled people
http://www.abc.net.au/news/2017-02-09/analysisa-ombudsman-on-healthcare-for-intellectually-disabled/8255738
Professor John McMillan is the acting NSW Ombudsman. Steve Kinmond is the Deputy Ombudsman.

The impact of discrimination and non- inclusive health care for intellectually disabled people in Australia.

Fine, Let’s Talk About The Autism Life Expectancy Study. By FeministAspie
TW: premature death, suicide, abuse, autism-cure-rhetoric and other aspects of systemic ableism
https://feministaspie.wordpress.com/2016/03/20/fine-lets-talk-about-the-autism-life-expectancy-study/
FeministAspie, an anonymous student from the UK who blogs about feminism and autism

This article discusses the limitations, ableist reporting and involves some analysis of a study that received a lot of attention in 2016.

Abuse, violence, eugenics, euthanasia and murder

Four Corners: can the NDIS prevent abuse of people with disability? By Carmel Laragy
TW: Abuse (including sexual abuse) against disabled people
http://theconversation.com/four-corners-can-the-ndis-prevent-abuse-of-people-with-disability-75286
Carmel Laragy is a Senior Research Fellow, RMIT University.

The answer is ‘no’. A Royal Commission is needed.

Abuse of people with disability requires royal commission, support services argue. By Alison Branley
TW: Abuse of disabled people
http://www.abc.net.au/news/2017-06-09/royal-commission-into-abuse-of-people-with-disability/8602508

It’s time to fix the power dynamics that allowed the abuse of people with disability. By Leanne Dowse
TW: Systemic violence, abuse and neglect of disabled people (specific examples given)
http://theconversation.com/its-time-to-fix-the-power-dynamics-that-allowed-the-abuse-of-people-with-disability-51307
Leanne Dowse is an associate professor and Chair in Intellectual Disability Behaviour Support, UNSW.

Violence, Disability, and the Lessons of Sagamihara. By David Perry
TW: Ableist hate crime mass-murder of disabled people in Japan, police brutality against disabled people of colour, black people and indigenous people (Canada, America and Australia), abuse of disabled children in schools (America and Australia)
https://psmag.com/news/violence-disability-and-the-lessons-of-sagamihara
David Perry is a disability rights journalist.

“The ableist attack on a residential center for people with disabilities highlights the violence that disabled people face around the world — and how far we have to go.”

The murder of disabled children can never be justified. By Carly Findlay
TW: Family violence and murder of disabled people and children and the following ableist justification of those acts, suicide
http://www.smh.com.au/lifestyle/news-and-views/opinion/the-murder-of-disabled-children-can-never-be-justified-20161020-gs6xog.html
Carly Findlay is an Australian blogger, writer, speaker and appearance activist.

Shervices by Un-Boxed Brain
TW: Filicide and ableist justification of it
https://un-boxedbrain.com/2016/05/shervices/
Un-boxed Brain is a non-binary, Autistic blogger.

This article explains how it is and why ‘lack of services’ should not be used as a justification for murder.

I’m pro-choice, but abortion can’t be the only ‘sensible’ option when it comes to disability. By Naomi Chainey
TW: Abortion based on ableist beliefs about disability, involuntary sterilisation of disabled people, ableist claims of disability ruining marriages
http://www.smh.com.au/lifestyle/life-and-relationships/parenting/im-prochoice-but-abortion-cant-be-the-only-sensible-option-when-it-comes-to-disability-20170215-gud9ok.html
Naomi Chainey is a freelance writer, media producer, and an arts bookkeeper. Her background is in management of small NFPs, disability rights and feminism.

It’s always concerning when people choose abortion solely due to impending disability, in an ableist culture, without being fully informed from the perspective of disabled people.

Better off dead? What Peter Singer doesn’t get about disability and euthanasia. By Craig Wallace
TW: Singer’s views on selective infanticide of disabled babies, voluntary euthanasia, eugenics, suicidal ideation, involuntary sterilisation of disabled people and ableist justification of the murder of disabled people
https://www.crikey.com.au/2015/08/17/better-off-dead-what-peter-singer-doesnt-get-about-disability-and-euthanasia/?wpmp_tp=0?wpmp_tp=0
Craig Wallace was (until 2016) the President of People with Disability Australia, a leading cross disability rights organisation in Australia.

Many disabled people have concerns about voluntary euthanasia that need to be considered. Craig does well, in this article, to explain those concerns.

Disability – a fate worse than death? By Stella Young
TW: euthanasia, assisted suicide, ableist comments and assumptions about the worth (and quality of life) of disabled people’s lives
http://www.abc.net.au/rampup/articles/2013/10/18/3872088.htm
Stella Young (24 February 1982 – 6 December 2014) was an Australian comedian, journalist and disability rights activist.

Another excellent article explaining the concerns that disabled people have about introducing voluntary euthanasia.

 

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

 

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.

 

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.