Autistic Culture: A presentation

 

Title slide:

Understanding Autistic Culture and Ableism

Slide 2:

Presentation Outline

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

 

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

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

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

Feel free to ask any questions, at any time.

Slide 3:

What is Disability Culture?

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

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

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

 

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

Culture is a lot more complicated than that.

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

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

Slide 4:

Autistic Culture (A Sub- Culture)

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

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

 

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

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

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

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

Slide 5:

Autistic Culture Cont.

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

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

 

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

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

Slide 6:

Autistic Culture Cont.

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

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

 

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

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

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

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

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

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

Slide 7:

Concepts to help understanding for the uninitiated

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

 

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

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

Slide 8:

Models of Disability

Medical Model of Disability:

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

Social Model of Disability:

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

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

 

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

Slide 9:

Social Model of Disability

Society is responsible for the most pervasive challenges of Autistic people

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

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

 

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

Slide 10:

Social Model of Disability Cont.

Origins and purpose

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

 

Slide 11:

The challenges resulting from societal bias

Autistic community perspective

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

 

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

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

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

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

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

Slide 12:

Ableism

The term used to describe this societal bias is ableism

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

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

 

Slide 13:

Ableism

Origins and Purpose

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

 

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

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

Slide 14:

Ableism cont.

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

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

 

Slide 15:

Neurodiversity

Definitions and origins

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

 

Slide 16:

Neurodiversity Movement

Definition:

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

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

 

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

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

Slide 17:

Autism Acceptance

Origin of the term

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

 

Slide 18:

Autism Acceptance cont.

Definition of the term

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

 

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

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

Final Slide:

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

 

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

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

References:

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

 

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

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

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

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

[SLIDE Who is Amaze]

Who is Amaze

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

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

(Hand over to Jane)

Thank you Jane

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

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

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

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

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

[SLIDE Ableist language]

Ableist Language

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

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

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

[SLIDE Passing]

Passing

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

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

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

[SLIDE Lived experience]

Lived Experience

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

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

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

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

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

[SLIDE The sensory environment]

Accessibility

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

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

[SLIDE The social environment]

Social Environment

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

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

[SLIDE New experiences]

New experiences

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

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

[SLIDE The emotional environment and ableism]

Ableism

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

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

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

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

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

Shoes and humanity

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

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

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

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

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

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

Why can’t you understand?

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

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

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

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

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

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

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

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

You can never truly walk in my shoes.

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

 

Ableism and homicide

“The media tend to report on hearsay… and not facts. They take pieces of a story or a perception of a story, link them together and then use engaging and emotive language to sell their own interpretation of a situation. The circumstances of what happened that day are unknown. The Police have not released any information…I think we, as a society, need to have respect for the family and the community who are experiencing something we could never imagine…Who knows what, why or when it occurred. I hope this doesn’t offend you. I too stand up for and speak up for people with disabilities and who experience DV (domestic violence) in families of all shapes and sizes.”

I had posted an article written by Stella Young, on my Facebook page, in the wake of an alleged murder/ suicide, which occurred several towns removed from where I was raised. The article was a damning criticism of the media’s response to it. Stella Young wanted to bring to our attention the ‘victim blaming’ rhetoric that was used by the media with respect to the murder victim’s disability and so did I.

The message above was sent to me by someone I love so I decided to remove the post for her sake, with massive feelings of guilt that I’d also committed a social fopar and caused people more pain. FYI the family were not Facebook friends of mine nor to my knowledge were any of their friends. One person commented that she knew friends of their friends and that they were grieving (implying that I should not have posted it).

This year in Australia a unique campaign against domestic violence was started and it has received significant media attention. It is referred to as the ‘Counting Dead Women’ campaign * and it gathers statistics on women as they are murdered. They report it immediately as it happens. The point is, this is happening now. Why do we need to wait a certain amount of time before commenting on it? As Emma Watson, UN Women Goodwill Ambassador, said in her speech during the launch of the ‘HeForShe’ campaign “If not me, who? If not now, when?”

Let me tell you something, I have never been a victim of domestic violence. However, if my husband ever kills me, I want everyone who ever cared about me to condemn his actions not sympathise or empathise with him.  If anyone refers to me being autistic as an additional stress on the relationship, I would like someone, anyone, preferably everyone to be ‘calling it out’ right away. Because ultimately, I will be the one who’s feelings should be considered foremost above the murderer and above the family and friends.

Over six months has passed since I posted Stella Young’s article and nothing more is reported nor will it ever be, as it is no longer news. However, Stella’s words still stick with me: “Some media have reported that police believe it was more than likely the ongoing strain caused Geoff Hunt to snap”.

Some of you will buy into the story that the burden of caring for a person with a disability could very well be a mitigating factor in any murder/ suicide. But there are by far more carers that do not murder or abuse the person they care for. I put to you that it is sexism / ableism/ racism in fact a long list of isms and phobias that are by far the mitigating factors. When the victims of domestic violence in Australia are predominantly women, with an even higher proportion of disabled women and indigenous women being abused, a pattern emerges. The statistics are similar in America for disabled women and women of colour.

It would be nice if everyone understood intersectionality. Intersectionality, as a concept, helps us to understand how the consequences of discrimination get greater for you when there are a greater number of things you can be discriminated against. Ultimately, the odds are not good for your mistreatment if you fit within more than one category of oppression within society (National Coalition of Anti-Violence Programs: Hate Violence Report).

A parliamentary research paper on the Domestic, Family and Sexual Violence in Australia determined that

“The full extent of violence against people with disabilities is unknown, but it is estimated that women and girls with disabilities may be twice as likely to experience violence as those without disabilities. Women with disabilities are particularly vulnerable to physical, sexual and psychological violence due to their situation of social and cultural disadvantage, and increased dependence. There are particular forms of abuse that are unique to people with disabilities, such as removal of an accessibility device, withholding medication and threatening institutionalisation. Adults with intellectual or psychiatric disabilities are particularly at risk of sexual assault and exploitation. When the abuser is the main carer, individuals suffer neglect, isolation and intense vulnerability to abuse; it may be impossible for them to get help.”

Note that no-where in this report do they say that it is the “burden” of caring that leads to an increase in violence against them but that women with disabilities are more vulnerable to violence due to their situation of social and cultural disadvantage and that there are additional forms of abuse available for them to be exploited by.

Thanks to the scare campaign about autism, led by Autism Speaks, autistic children are particularly at risk. We are essentially being told by Autism Speaks and compliant media that to be a carer is a burden that can lead us to murder. It’s almost beyond belief that Kelly Stapleton was given a platform to humiliate and blame her autistic daughter who she attempted to murder, on the American talk show ‘Dr Phil’.

Making excuses for murder no matter how well-meaning, effectively accepts it as inevitable thereby unintentionally condoning it. As Jess from ‘Diary of a Mom’ so eloquently explains when a life is devalued by violence it is time to judge. I contend that if we don’t judge privileged violent offenders and worse still if we judge the victim, we are complicit in supporting systems of oppression that exist within society in it’s very worst expression.

*and in an ironic twist, disabled women have been excluded from this campaign (refer here for details). This just helps demonstrate the depth of the problem.

“You are more affected by autism than me”

My teenage cousin Lucy (not her real name) randomly said to me one day “I think you are more affected by autism than me.” Her socially inappropriate remark made me want to laugh. My immediate unconsidered thought was that Lucy was definitely more autistic than I was.

Instead of laughing, I tried to be tactful and replied “You can’t really say that someone is more affected than someone else because the strengths and challenges of each person with autism are different, like you are really good at music and I am really good at… other stuff” (I had trouble coming up with something specific and tangible in that moment). My conversations aren’t brilliant at the best of times.

Lucy was pensive for a minute and added “Oh yeah, I have meltdowns (and you don’t)”. Shortly after that, I found myself thinking that Lucy is a lot more observant than me and that I struggle to express myself verbally and so perhaps I am more autistic than her.

Then I realized how hypocritical and spurious it was for me to try to compare myself to Lucy. Autism or ‘no autism’, how can anyone compare themselves to another person in terms of their overall functioning; strengths or challenges? Not to mention the 20 year age gap between us.

Perhaps you can compare individual skills and talents but Lucy’s comment made me realize that I should reconsider using generalized categories of ‘high-functioning’ or ‘low-functioning’ with respect to autism. Why? Because descriptions of individual abilities of each person with autism is more accurate and respectful than categorizing their ‘functioning’ as if it applies to all their abilities.

I have recently entered the world of blogging and have been thrilled to find many autism and disability activists eloquently writing about concepts that resonate with me but I have also found it overwhelming. I have always been anxious about offending people and it is so easy to offend people when there is so much at stake. Nerve endings are raw and for good reason; for too long people with different abilities have been discriminated against unfairly.

I am happy to use whatever terminology suits people best because I care about how they feel but it is impossible to suit everyone when different people prefer different terminology. I visited a great blog site called ‘Yes That Too’ recently, where the blogger stated emphatically that she prefers to be referred to as an ‘autistic person’ and not ‘person with autism’ and this the case for many autistic self advocates who prefer identity- first language (I’d urge you to click on the link above to find out why). However, there are others who prefer to be referred to as a ‘person with autism’ (person first, autism second) and I am one of those people*. Rather than just asterisk the last point, I will explicitly point out now that my preference has changed, please refer to the brief explanation at the end of this post.

We have many different identities. To me, I am me. I am Rachel, I am a collection of identities; autistic traits, neurotypical traits (because yes we have some of those too), roles that I fulfill, hobbies and interests that I have, opinions and beliefs. I don’t like having one of those identities taken out and put before my name or ‘personhood’ (after ‘person’ perhaps but not before)*.

With regard to my autistic identity, I am a person with a ‘more different than average’ way of thinking, I am a person with autism and I am autistic. It can be both ‘autistic’ and ‘with autism’. I like Judy Endow’s take on this (she wrote something even better than this that I loved but I can’t find it)*.

Right now, I would be ok with being referred to as an ‘autistic person’ blogging about autism or as a ‘person with autism’ blogging about autism but if it was in everyday conversation I would prefer ‘person with autism’. It would make me feel strange and uncomfortable for everyday people in my life to consider me as autistic first and foremost*.

I will adopt the language preference of whoever I am conversing with or talking about (because that is the respectful thing to do and I also ‘get it’) but generally for a wider audience, such as while blogging, I will mostly use person-first terminology because it fits the terminology used in journal articles that I often quote from and because it is more familiar for people with a basic understanding of autism and this is the target audience of my blog, those starting out on the journey. Ultimately and personally however, I am most comfortable with using the terminology of ‘having autism’ because I am comfortable with thinking of it as ‘having’ a different way of thinking** and because many people may not be able to see beyond ‘autistic person’ and see the whole multi-faceted person that I am; their equal. It’s a risk I can’t allow myself to take…yet. I’m only part-way through the journey myself*.

Aside from how one chooses to identify oneself, I’m now strongly convinced that categorizing people by their overall ‘functioning’ does not seem logical and could easily offend those who are categorised as ‘low-functioning’ or even ‘high-functioning’. Alyssa from ‘Yes That Too’ explains it simply but effectively “High functioning means your needs get ignored. Low functioning means your abilities get ignored”.

Addition

I’ve been thinking about how to explain how I identify with autism a lot recently especially after reading this.

“I have autism” or “people with autism” is at odds with most autistic self advocates. Quite rightly, autistic self advocates are furious when told they should not refer to themselves as “autistic” because it is not using person- first language. However, in their attempts to blog about the inappropriate and offensive way that they are told how they should use language to identify themselves they do exactly the same thing to me. How can someone say on the one hand that person-first language is a “logical fallacy” and then in the next breath say but if you are autistic you should identify how you feel comfortable?

One of the comparisons used to explain the limitations of person – first language is by comparing it to other identities to show how language is used differently specifically for autism (the premise being that the language used for autism more closely resembles the language used for disease states rather than for identities and autism is not a disease) so I decided to use the same approach to explain how I feel without having to include (much) logic.

My name is Rachel McNamara, it is the name I have had for as long as I can remember. When I got married I did not want to change my name because I identified with ‘Rachel McNamara’ and did not feel comfortable changing it. Whenever, I have to fill in forms, I tick the ‘Ms’ title but if I had an option I would prefer not to tick a title at all.

I prefer not to describe myself as a ‘straight person’ or an ‘Australian person’. If I was explaining myself according to my sexuality or nationality, I would say “I’ve only ever liked men (colloquial expression not meant to be taken literally) and “I come from Australia” because that’s the way I feel most comfortable saying it.

However, if someone said to me “I am a gay person” I would not feel comfortable describing myself with similar language. If they said “I am an Australian person” I would not feel comfortable describing myself like that either. I would refer to them that way because it is their preference but I would not refer to myself like that because it is not my preference. Similarly, if someone said to me “I am an Autistic person” I would refer to them that way because it is their preference but I would not refer to myself that way because it is my preference*.

If I was bringing the topic up with someone whose preferred language I did not know, I would say “I have autism” because that is how I feel most comfortable saying it. When writing about autism generally I will also say “people with autism” or “people without autism” because that is how I identify (I do consider autism to be part of my whole identity) so my preferred language extends to my general discussion of the topic. I dislike the rhetoric of ‘burden’, ‘disease’ and ‘cure’ just as much as the next autistic self advocate*.

The way I choose to use language is influenced by many factors but in the end it is my choice and based on how I feel most comfortable. It should not need a logical or facts based justification.

In the end, person-first language and identity- first language both come from a place of merit. You can use the terms and not apply the concepts behind them (which is not being true to the language) or you can not use the terms and still apply the concepts behind them. It is the concepts that are most important. However, it is important to be sensitive about adopting the language of the person who are communicating with because it matters to them more than you can imagine.

Notes

*A year on from writing this post and my preference is identity- first language. Why? Because of all the points others have made in favour of it, I have gotten used to it (change usually takes a while to get used to) and it is more congruent with activism. I consider myself to be an autistic activist.

** I also think of autism as a disability. It can be both a difference and a disability when the environment discriminates against difference as in the Social Model of Disability.

Image courtesy of Mr Lightman / FreeDigitalPhotos.net