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/

3. Boycott Autism Speaks https://www.facebook.com/pg/boycottautismspeaksnow/about/?ref=page_internal

4. Walker, N. (2014, September 27). Neurodiversity: Some Basic Terms & Definitions. Retrieved from http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/
5. Autism Acceptance Month (About Page) Retrieved from http://www.autismacceptancemonth.com/about/

6. John Elder Robison http://www.johnrobison.com/purchase-books.php

7. Wenn Lawson http://www.buildsomethingpositive.com/wenn/books.html

8. Lydia X. Z. Brown https://autistichoya.net/papers/

9. Ido Kedar http://idoinautismland.com/?page_id=213

10. Social Model of Disability, Autism Acceptance Month. Retrieved from http://www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/social-model/
11. 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

12. Mike Oliver (2013) The social model of disability: thirty years on, Disability & Society, 28:7, 1024-1026
13. 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
14. 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
15. Various. Encyclopedia of Disability; Sage Publisher: Newbury Park, CA, USA, 2006.
16. 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
17. 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/
18. Thomas Armstrong (2015) The Myth of the Normal Brain: Embracing Neurodiversity, AMA Journal of Ethics, 17:4, 348-352
19. 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
20. Estee Klar (2006) The Autism Acceptance Project, Legacy Site, Retrieved from http://www.taaproject.com/
21. Autism Acceptance Month (Definition: Autism Acceptance) http://www.autismacceptancemonth.com/resources/101-3/autism-acceptance/autism-acceptance/

 

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

Click to access 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

Click to access 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

 

Shoes and humanity

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

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

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

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

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

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

Why can’t you understand?

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

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

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

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

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

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

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

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

You can never truly walk in my shoes.

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

 

The last man standing

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

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

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

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

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

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

Hi!

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

“caregiver burnout”

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

love explosions

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

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

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

The…

View original post 2,040 more words

to the autistic people in the crowd

It was a call for autistic people!

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

Child’s play

When the air is full of tension, when the frequency of fights begins to overwhelm, when you are not feeling so much love towards the behaviour of your children it is a wonderful time to stop whatever it is you are doing and play with them. But boy am I glad the days of imaginative play are over because now I can play a game of cards with them, play a board game, play poison ball on the trampoline or even just cuddle up on the couch and watch a kids movie together. All you need to do is spare the time and the results will save you time in the long run (reducing time spent disciplining them).

When I start playing with my boys I notice the smiles and laughter, their behaviour improves by a multiple of ten and my own blood pressure drops and mood improves. Big events like a family bike ride, baking (it’s big for us) or outings do not often achieve the same results for us because they present triggers for anxiety. Such activities are more rewarding when planned in advanced and well organised for a time when we are all fresh and energetic.

As for imaginative play, my children and I have autism and many health professionals have recommended that young children with autism be extended in this area because imaginative play is something that people with autism are proposed to lack in, although the results of imaginative and pretend play are variable among people with autism (Woodard 2011). I can see the value of imaginative play as being like role-play or a rehearsal for real life and therefore teaching valuable skills (social or other).

But honestly, as a general rule, I find imaginative play challenging in the sense that in order for it to be fun you have to really think outside the box. The amount of thought I have to put into it to be enjoyable has a high energy cost for me. Otherwise, imaginative play is just too boring to contemplate. I think I share this in common with my son Jeremy (unlike Damian) who is only ever interested in imaginative play when someone else is leading it. Jeremy is one of those kids who lines things up and catalogues things when playing alone. I don’t look at that as some kind of dysfunction. That kind of play has its benefits too. I consider us to be maths and science people.

However, when Jeremy was younger, I could see the benefit in imaginative play for him because if other kids were doing it, I wanted to make sure that he could understand the concept and join in at the very least. An occupational therapist, who had an interest in the area of imaginative play in children with autism, recommended the resource ‘Learn to Play’ for Jeremy. ‘Learn to Play’ is essentially a detailed step-by-step guide, with play scripts, on how to develop a child’s imaginative play skills for each developmental level. I did find it the resource useful so it may be of interest to you but honestly I also found it laborious.

Have you ever had a pretend cup of tea with your child? I have dozens of times, and I don’t even drink tea in real life. How many times can you blow on a hot cup of tea before you hyperventilate? I get bored and my boys detect when I am bored and it’s just not as much fun. Now if I had my way, I might be able to mimic (really dramatically) a waiter in a cafe,  who spills the coffee before reaching you and has to clean it up and apologises profusely for the inconvenience and offers you a free coffee in compensation. When I (the waiter) go back to the kitchen (feeling really bad about my mistake), I debrief with a fellow waiter about what a terrible week I have had (what with my girlfriend breaking up with me and my bike being stolen and all). My waiter friend sympathizes with me and tells me not to worry about the spilt coffee saying that it’s ‘no big deal’ and offers me a ride home. Now, that’s a little more interesting.

Have you ever played doctors and nurses? I have dozens of times. I’ve had so many pretend x-rays that I would have developed pretend cancer by now. Now if I had my way, I might invent a new treatment for a previously incurable condition but patients would have to travel long distances and sell their houses and/or fundraise to pay the exorbitant fees involved. Post treatment and operation, patients would skip home (literally) after many weeks of rehabilitation singing my praises (literally singing) and grateful for a second chance at life, swearing that they will never complain about small problems like a stubbed toe or sprained ankle again (then turn around and stub their toe two weeks later and swear profusely about it).

Have you ever played families? I have dozens of times, and it’s actually a lot easier to script because I do it ‘day in and day out’. However, if I had my way (and from time- to- time I have had my way on this one), I might insist I play the role of the child because that’s a role I can have some fun with. I might complain that I am bored and beg to play the iPad, ignore requests to ‘get ready’ to go somewhere by being vague and continuing to play with my action figures or torment my brother until it ends in tears. Of course, my boys would get sick of that pretty quickly and insist I become the mother. Then they would give me a bit of karma in return and as ‘pretend mother’ I would decide that it was time to stop whatever pretend activity I was doing at the time and play a game of pretend cards with them and we’d all live happily ever after. Hey, it’s my pretend story OK.

Seriously though, if I need to teach my boys a particular social skill we might do a role play or rehearse it but as for ‘imaginative play as a therapy’ goes, those days are over for us and I could not be happier. The ‘Learn to Play’ resource was targeted at ages 5 years and below. Now, don’t even consider telling me (over a cup of tea for instance) about the existence of imaginative play resources for older age groups or I may just hyperventilate.

Reference:

Woodard, C.R. and Van Reet, J. Object identification and imagination: An alternative to the meta-representational explanation of autism. Journal of Autism and Developmental Disorders 2011; 41:213-226

Introducing Autism: A personal account

“He’s just odd like you!” my husband grinned; his humour had exposed a truth that I was previously unaware of. I had been expressing my concern at my two year old son’s peculiar behaviour to my husband when he uttered the words that forever changed the way I interpreted the world and how I thought the world interpreted me.

I had sometimes reflected on my life with the purpose of trying to understand past experiences where it was obvious that I was completely unable to converse or where I had exhibited extreme vagueness beyond what would be considered a personality trait and yet in contrast to that, I excelled academically. However, until my husband’s comment that day, I did not know that I appeared generally ‘odd’.

What occurred to me next was that if my son had inherited the difference that made me appear ‘odd’ to others then he might experience a life like I did. All I could think about was that I didn’t want him to have a childhood like mine, being unable to relate to and being afraid of my peers. I knew then that I was going to do everything I could to find out what it was that my son and I had in common that made us different so that he could have a ‘head start’ finding his niche in the world.

Shortly after that, perhaps days or weeks, I watched a documentary on Aspergers Syndrome (AS). I hadn’t intended to watch it, it just happened to be on when I sat down to watch TV and it caught my interest such that I didn’t change channel.

The reason it caught my interest was that it referred to an Autism spectrum. It had previously occurred to me that my communication difficulties were like a form of Autism but I was unaware that Autism existed on a spectrum until then. I was only aware of the more extreme presentation of it without any understanding of what a person with Autism was thinking or feeling. Although I couldn’t relate to everything that the documentary addressed, Aspergers Syndrome described as an Autism Spectrum Disorder (ASD) was the closest that I had come to an explanation that fit.

Broadly speaking an ASD is a complex neurological condition which affects social communication and is also characterised by restricted and repetitive patterns of behaviour interest and activities*. As a Spectrum Disorder it represents the wide range and complexity of challenges and abilities of people with an ASD.

According to one of my most favourite books on ASDs, ‘Inside Asperger’s Looking Out’ by Kathy Hoopmann:

‘In general, a person with Asperger’s syndrome, or high-functioning autism, is someone who may have:

• Difficulties relating to others in social situations
• Difficulties understanding nonverbal communication
• Heightened sensitivity to touch, sight, hearing, taste and smell
• Set routines and a strong preference for order
• An intense ability to focus in specific interest areas
• A great loyalty towards others
• A unique mind which is able to see life from a new perspective’

Another of my favourite books ‘Asperger’s and Self-Esteem: Insight and Hope Through Famous Role Models’ by Norm Ledgin, lists positive traits of ASD including: a natural sense of fairness, justice and honesty, being creative in several interest areas and having an appealingly droll sense of humour.

By creating this blog, I hope to promote an awareness of the positive traits of ASDs because there are many and they deserve to be recognized. I do not believe that we can adequately support people (in an environment that caters primarily for those without an ASD) without first having respect for them. Being aware of what people with an ASD can achieve because of the ASD rather than in spite of it, may help foster respect.

Primarily this blog is designed to offer insight for parents, teachers and health professionals and informed guidance to parents on how to support their child with an ASD.

*My understanding of Autism has moved beyond the medical diagnostic criteria since writing this post. I never really believed that it was a disorder but have come ‘full circle’ on understanding it to be a disability (according the Social Model of Disability) and a part of the neurodiversity paradigm. I encourage you to read this article by Nick Walker (a guru in the neurodiversity paradigm) for a more nuanced understanding of what Autism is. Unfortunately, my early posts may contain ableist comments. For instance, people should not have to “achieve” in order to be respected.