Autistic Culture: A presentation

 

Title slide:

Understanding Autistic Culture and Ableism

Slide 2:

Presentation Outline

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

 

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

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

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

Feel free to ask any questions, at any time.

Slide 3:

What is Disability Culture?

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

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

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

 

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

Culture is a lot more complicated than that.

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

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

Slide 4:

Autistic Culture (A Sub- Culture)

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

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

 

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

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

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

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

Slide 5:

Autistic Culture Cont.

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

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

 

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

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

Slide 6:

Autistic Culture Cont.

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

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

 

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

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

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

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

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

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

Slide 7:

Concepts to help understanding for the uninitiated

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

 

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

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

Slide 8:

Models of Disability

Medical Model of Disability:

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

Social Model of Disability:

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

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

 

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

Slide 9:

Social Model of Disability

Society is responsible for the most pervasive challenges of Autistic people

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

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

 

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

Slide 10:

Social Model of Disability Cont.

Origins and purpose

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

 

Slide 11:

The challenges resulting from societal bias

Autistic community perspective

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

 

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

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

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

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

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

Slide 12:

Ableism

The term used to describe this societal bias is ableism

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

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

 

Slide 13:

Ableism

Origins and Purpose

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

 

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

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

Slide 14:

Ableism cont.

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

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

 

Slide 15:

Neurodiversity

Definitions and origins

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

 

Slide 16:

Neurodiversity Movement

Definition:

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

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

 

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

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

Slide 17:

Autism Acceptance

Origin of the term

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

 

Slide 18:

Autism Acceptance cont.

Definition of the term

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

 

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

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

Final Slide:

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

 

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

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

References:

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

 

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