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

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

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

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

[SLIDE Who is Amaze]

Who is Amaze

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

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

(Hand over to Jane)

Thank you Jane

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

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

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

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

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

[SLIDE Ableist language]

Ableist Language

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

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

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

[SLIDE Passing]

Passing

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

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

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

[SLIDE Lived experience]

Lived Experience

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

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

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

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

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

[SLIDE The sensory environment]

Accessibility

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

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

[SLIDE The social environment]

Social Environment

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

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

[SLIDE New experiences]

New experiences

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

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

[SLIDE The emotional environment and ableism]

Ableism

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

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

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

[SLIDE Quote]

Quote

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.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s