World Autism Awareness Day and why its ok to let your activism hang out.

April 5th, 2014

I want to talk about the microagressions occurring on and around WAAD and why as activists we have to persist even when there are those who want everything to be bright and shiny; because when people want everything to seem “positive” or for us to “move forward” what they are really saying is “I invalidate you and your experience”, “I don’t want your pain in my face”, “I erase your contribution from the story” or “my privileged experience is the only experience”

“Simply stated, microaggressions are brief exchanges that send denigrating messages to marginalised groups. Any group can be guilty of delivering microaggressions, but the most painful and harmful ones are likely to occur between those who hold power and those who are disempowered.” (Sue, 2007)

“In many cases, these hidden messages may invalidate the group identity or experiential reality of target persons, demean them on a personal or group level, communicate they are lesser human beings, suggest they do not belong with the majority group, threaten and intimidate, or relegate them to inferior status and treatment.” (Sue, 2010)

Some Microagressions seen or reported:

“What’s the difference – its all for a good cause right?”

“People will get confused if we have more than one message”

“I’m saying that the ugly bitterness that i hav[e] seen on social media does nothing for autism awareness or understanding.”

“well you look normal to me”

“You seem to act normal… you don’t act weird or anything… you look healthy… you seem smart.”

“Instead of spending your time trolling all these posting and spewing your hate and anger, start your own page and spew it there. Just because you oppose Autism Speaks doesn’t give you the right to ruin it for others.”

“Oh yes, but you’re so different to most people on the spectrum”.

“Why do you have to make such a big deal about it?”

“Just don’t make it too ‘political’ ok”

“Oh I heard somewhere that we’re all ‘on the spectrum’.”

high functioning, high functioning, high functioning

Tell me about some of the microaggressions you have seen or heard…

 

Differently Wired

November 8th, 2013

What does differently wired mean to someone who is that way. Some people may dismiss this term ‘differently wired’ as being twee or patronising. But it’s hard to explain things without having some kind of paradigm. So the paradigm is that due to genetics there are some hardwired differences in my brain. Is not speculative this is factual. These genetic differences affect my neurotransmitters which in turn affect my movements and my thinking. Some level of impairment is inescapable.

Throughout my life I have been accused of faking it. However there is a familial legacy that is undeniable. This legacy in a way means that I’ve grown up with a family with similar traits which has normalised these traits somewhat. You get to have people like you around you. It was also a fact that you have people around you who are not like you who become stressed about people like you. There was an early in life attempt to define what was indeed wrong with us. But as it was established that it was so rare there wasn’t really any comparator. Obviously in the 40 years of my life there have been advances in medicine and genetics that allow us to fully understand the different wiring. Well we understand it from a genetic and neurological perspective, but as an impairment it has curves on its curveballs. I see the portrait in my father, in my uncle and my cousins and my cousin’s children and in my brother. A Mishmash of odd movements and odd thinking styles that are incredibly unique but sometimes distressing. And I say distressing because it is distressing to compulsively pull your hair out or to be afraid of everyday objects. Whilst a lot of disability is located in the interactions between a person with the impairment and society, some things are just internally disabling. Chronic illness talk about spoon theory and say that spoons is only a concept that applies to those with chronic illness. Whether they are spoons, knives, forks or some other every day object as the metaphor it takes more to live when you’re differently wired.

More energy, and more processing time,more problem solving time and more endless looping of the brain. Talking about more me doesn’t mean POOR me. It means asking people to think about what it’s like to live differently wired. I know my differently wired Cousin has had to do things differently as a mother and then think about how she supports her differently wired children to be the best that they can be. And it is frustrating that people can’t recognise a rare disorder in all of its complexity and with all of its comorbidities. This is due to the fact that we just can’t accept diversity and everything must be homogenous. The homogeneity required by the school system for example has reached a point at which it has to be considered ludicrous. If you’re not of the homogenous ilk you have prove beyond reasonable doubt why and what your needs are before they can be met. In the meantime children are being squashed by our factory schools. I am so lucky that I’m not a victim of factory schooling although I met resistance in some factory schools. What is an outstanding factor in diversity and diverse people it is resilience and the matter of fact way people will just get up and do it all again.

These are
thoughts as they come

The last thing I Wanna talk about is the fact that we are moving towards a society where those with identifiable genetic impairment face greater discrimination through technology. If you know what gene causes the impairment what is the next step? Moreover are we morally ready for that step? At least 8 living members of my family might want to help you with that one.

FEAST

November 5th, 2013

This weekend sees the start of the FEAST Festival – my home town Queer cultural festival. A number of years ago I was performing in the festival in a show called ‘The Cracked Pot’ a place for those of us queers with disability to express our sexuality through theatre. It was theatre at its least comfortable with queer disabled sex on tap and an integrated audience experience. So basically if you came to the  show there was a chance you could be sitting next to a sharing the performance space with a disabled queer!!! I performed a piece about depression but I also performed a piece about my brother and the ostracism he faced as a member of our family. Because of his impairment people found it hard to communicate with him and he with them so much patience was required.  We all got through the hardest years and he has worked the hardest. Performing this piece with my father sitting opposite was life changing.

The FEAST Festival can be the seat of life changes with young people coming out and artists interpreting queer life. But we have to keep pushing for those who are queer and disabled to be a visible part of the festival and for events to be accessible.

My brother and his man:

 

boys equal love

SCA

November 4th, 2013

SCA????? Yes SCA – Super Crips Anonymous.  It’s a club I’m proposing  for all of us who overcompensate for our impairments by doing super freaking amazing stuff, a lot, if not all, of the time.  We are super freaking vigilant about access and inclusion not only our  own but everybody else’s. We usually belong to  3 maybe 5 committees and have been involved in at least one national organisation.  We rarely just chill and if it looks like we are chilling were actually  just plotting our next move.  We are often writing or contributing to submissions on disability related matters. You will find us operating on multiple platforms and in multiple time zones.  We get sick, we freak out, we burn out and then we get up and do it all over again. We are driven to say the least.  We don’t listen to people who tell us to slow down. If we have them, our partners, friends and children wonder what the hell we are doing and what this totally separate vocabulary is about and they dread us bumping into someone and ‘talking SCA business’ for – well for as long as it takes. We are a unique breed with no off switch. I often wonder if all the disablement in the world disappeared would I stop – hell no there are long list of oppressed peoples that need the SCA.

So Super Crips Anonymous UNITE!!

30 Day Challenge

November 3rd, 2013

A few people I know are doing this 30 day challenge where they  write a blog and day for 30 days.  So I have decided to join them and  revive this much neglected blog. I read this article by Leah Hobson recently – Disability in an Alternative Universe - in which she was searching for portrayal of disability in Science Fiction writing.  I am an avid science fiction fan and I’m really just waiting for our technology to catch up with stuff I’ve been reading all my life.   I’m waiting  for more technology because I’m willing to embrace it even though some people believe technology will lead to an apocalypse, I’m convinced that used well it may lead to emancipation.  And I don’t  mean living out your life through a sexy blue avatar, I mean embracing the cyborg.

I’m waiting for the attachments/implants to enhance my life. But while waiting lets do a bit of an inventory of what’s already in play. I can use voice recognition to write this blog and navigate this machine, I can (albeit crudely) back up my memories on my terabytes of hard drives, I can ask my smart phone to do all manner of things and my little intelligent wrist band tracks my movements and monitors my sleep. They are not yet seamlessly integrated but if I had more cash they could be integrated more so. My crip friends integrate with their chairs and aids and dream endlessly of less CLUNKY ways of doing things. And hell why aren’t there less clunky ways of doing things – why isn’t the crip/cyborg paradigm more sexy in an actual and a business sense.

There are some people out there jumping on the bandwagon though – like this guy who used a 3D printer to make an animatronic arm for $500 – yep 500 bucks. Check it out:3D Printing in Animatronics: Easton LaChappelle at TEDxMileHigh

The point of this blog post and what Leah also explores is not only where are we in the Sci Fi narratives but where are we in the real world and why with all our tech obsession isn’t all of this sexy and more accessible.

Cure vs Acceptance in the context of Neurodiversity – Autistics Speaking

November 2nd, 2012

Introduction

This paper will explore two issues in disability that of cure and that of acceptance. Particular attention will be paid to the area of Neurodiversity, that is the idea that people diagnosed with autism and related conditions form a neurodiverse population that forms part of the human spectrum of diversity.

The idea of a cure for permanent impairing conditions has been a principal focus of medicine for centuries and for decades many public resources have been injected into finding cures for specific conditions. Shakespeare (2006) proposes that the representation of people with impairment as ‘needing a cure’ is a powerful mechanism for attracting funding to charities and from government. On the other hand some groups of people with impairments (mostly excluding those with life-threatening and degenerative conditions) are willing to forego the idea of a cure in favour of personal and public acceptance of their difference and diversity (Baker, 2011; Shakespeare, 2006). One such group is the Neurodiverse – encapsulating people with autism.

Autism is a condition that is neurobiological in origin and manifests itself in a spectrum of disorders as described by modern psychiatry. These disorders include autistic disorder, Asperger disorder and Pervasive Developmental Disorder Not Otherwise Specified (APA, 1994). Each of these disorders is characterised to an extent by communication difficulties, social deficits, and restricted and repetitive behaviours. There are a number of documented treatments for autism including behavioural therapies, psychological therapies, pharmacological therapies and biomedical therapies, all with varying degrees of success and validity (Herbert, Sharp, Gaudiano, 2002). It must be noted that there is at present no scientifically validated cure for autism (Autism Science Foundation, 2012).

Neurodiversity and Acceptance

The Neurodiversity Movement provides a challenge to modern conceptualisations of autism and puts forward the idea that autism is naturally occurring, not a disease, and should not be the subject of medicalisation and subsequent treatment or cure (Ortega, 2009; McGann & Hutson, 2011). The Neurodiversity Movement relies on strategic essentialism (Garland-Thomson, 1997) in the formation of a minority group with a particular set of characteristics. To this end the Autistic Self Advocacy Network (ASAN) (2012), the largest proponent and organizer of the Neurodiversity Movement, refers to Autistic Community and Autistic Identity as signifiers of this minority group. Bagatell (2010) observes that the discourse of this autistic community provides an interpretation of what it is to be autistic that is in direct contrast to the descriptions in the biomedical paradigm. Her research suggests that people within the neurodiversity movement want many behavioural aspects of autism to be accepted as difference and that autism be treated as a fundamental part of who they are, feeling that without autism they would not be the same person.

Baker (2011) highlights a continuum of understandings of disability from essentialist through to constructivist, the former locating disability within the person and the latter locating disability in the social and political infrastructures surrounding the person with impairment. This continuum of understanding disability has some correlations with the understanding of the perspectives along the continuum between cure and acceptance, however, facets of essentialism and constructivism cut across this continuum. As highlighted previously The Neurodiversity Movement relies on strategic essentialism but it also draws heavily on constructivism, placing the disability associated with autism within the realms of social construction, and arguing that much of the disability could be ameliorated if society were to accommodate and accept neurodiverse individuals, making difference relative. (Garland-Thomson, 1997; Bound, 2008; Baker, 2011). Baker (2011) argues that those engaged in neurodiversty activism consciously employ the theories, language and tactics of previous proponents of diversity in the twentieth century. The wider disability rights movement, the gay rights movement, black power and feminism have all influenced neurodiversity activism.

Within the Neurodiversity Movement there is a specific focus on acceptance of diversity and celebration of difference (Baker, 2011; Robertson, 2010). ASAN (2012) argue that:

“Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone in our society, thus allowing all people to live up to their potential.” (n.p.)

Estee Klar, (parent of a child with autism), founded The Autism Acceptance Project, which has generated such projects as Autism Acceptance Day, Autism Acceptance Month and Autistic Pride Day. Klar delivered a series of lectures entitled The Joy of Autism: Redefining Ability And Quality of Life, which have been acknowledged both by ASAN and the United Nations as being definitive of autism acceptance (ASAN, 2012). Through her blog Klar (2012) explores the challenges of raising a son in the face of society’s ableism, believing that teaching the world to accept her son’s autism will increase his quality of life.

At an international level The United Nations, through World Autism Awareness Day, promotes acceptance of people with autism and their families through upholding their rights. According to the secretary general of the United Nations (2012) World Autism Awareness Day “should spur global action to combat the “unacceptable” discrimination, abuse and isolation that people with the disorder and their loved ones face”….. and…. “people with autism are equal citizens who should enjoy all human rights and fundamental freedoms.”

This came after submissions to the United Nations such as the one from Nelson (2004):
“We mean for this statement to begin a process of official recognition by the United Nations that we are indeed a minority group, and worthy of protection from discrimination, inhumane treatment, and that our differences are valid in their own right and not something that needs to be cured. (Nelson 2004, cited in Davidson, 2008: pp799)

Critics of the Neurodiversity Movement say that this approach does not accept that some people may desire a cure for themselves or their children who are affected by neurological conditions. Initiatives, such as Defeat Autism Now, have sprung up around the notion of cure and recovering children from autism (Rocque, 2010).

The Cure

Contextualised by the essentialist medical model of disability the reflexive desire for a cure is often the first line of response for those confronting a diagnosis of autism (Baker, 2011). This is hardly surprising as within western society there is a message, both overt and covert, that anything outside of normal is unacceptable and normalcy is habitually expected. (Posavad, 2009; Baker, 2011) From Posavad’s (2009) study of the lived experience of mothers of children with autism highlights the feelings of parents:
“Loss of control seems obvious out of sadness for what her child is and might never become. Pressure to ‘help’ her child creates feelings of frustration and disappointment”(pp. 52)

In the context of the stress of parenting a child with autism many families seek or at least hope for a cure for autism. Many parents see their child’s autism as something that masks the real child and prevents them from living a productive life, furthermore, causing the children emotional and physical suffering (Bagatell, 2010)

In America, the National Alliance for Autism Research (NAAR), founded in 1994, and the Cure Autism Now Foundation (CAN) were the comtemporary forerunners in the search for a cure in America and have since merged into the organization Autism Speaks (Ortega, 2009). Autism Speaks, heavily situated within the medical model of disability, has clinical programs such as the Autism Treatment Network, The Autism Genetic Resource Exchange, The Autism Tissue Program and a clinical trials network. In Australia the Mindd Foundation has been set up in order to offer treatments that recover children from autism (Mindd, 2012) and with the proliferation of information via the internet many organizations such as Autism Speaks have global reach into Australia.

These more modern organizations follow in the wake of predecessors such as Bruno Bettelheim (1967) who in the 1960’s claimed to have found the cause of autism; cold and detached mothers who caused a defensive reaction in their children. Bettelheim claimed that the cure for these children was a ‘parentectomy’ – extended periods of time without their parents, he also claimed an 85 percent cure rate at his school (Herbert, Sharp, Gaudiano, 2002). Bettelheim was later found to be a ‘self styled’ child specialist with no formal training in psychoanalysis, his theories were subsequently discredited (Grinker, 2007).

According to Shakespeare (2006) from a critical realist perspective we cannot discount the role of biomedical and psychological intervention for people with disabilities. Shakespeare highlights autism as a ‘difficult case’ as within the spectrum of autism there is a hierarchy of impairment from quite functional, yet different, people to people with significant intellectual and speech and language impairments. Shakespeare feels that the goal of promoting acceptance should not distract from mitigating the effects of impairment. However he comments that denigrating or misrepresenting the lives of people with disabilities, in the search for cures, cannot be justified.

The Tensions

Scientific research agendas, fuelled by the hopes of parents for a cure, have propelled autism into the media spotlight. Celebrities have flocked to campaigns to find a cure for autism with Oprah Winfrey hosting television programs, ex model and actress Jenny McCarthy, parent of a child with autism, and her then partner Jim Carey walking for a cure.

These celebrities begin to blur the lines between science and subjectivity, particularly McCarthy who claims her son has been cured of autism, and has written two books on healing autism and has founded an organisation named ‘Generation Rescue’. McCarthy relies on anecdotal evidence to support her work claiming her son is her science (Belkin, 2010). McCarthy (cited in Roque, 2010) fuels the negative emotions associated with autism to mobilize support for a cure:
“Autism, as I see it, steals the soul from a child; then, if allowed, it relentlessly sucks life’s marrow out of the family members, one by one” (n.p.)

Actor Lou Diamond Phillips also led a parade of children, ‘recovered’ from autism, during an opening event for an autism treatment organisation. Citing the work of Garland-Thomson, Roque (2010) argues that this is an example of the ‘freak discourse’ of the 19th century alive and well today. The parade, he argues, is an example of the reversal of the freak, a parade of reclaimed or recovered normalcy aimed at enticing the audience to purchase the treatment products.

In Australia the organisation Autism Awareness (2008) ran a community service announcement that claims that autism is “stealing the minds and personalities of the generation of Australian children” and further claims “30,000 Aussie kids have been kidnapped by autism”. This community service announcement is recorded by a number of prominent Australian actors and TV personalities.

A case that further demonstrates misrepresentation and the tension between those seeking a cure, and those seeking acceptance, is that of the “Ransom Notes”. Kras (2010) and Bagatell (2010) outline the case in which the New York University’s Child Studies Centre placed ‘medical advertisements’ highlighting the psychiatric disorders they treat. The advertisment for autism read as follows:

Autism
We have your son.
We will make sure he will
not be able to care for
himself or interact socially
as long as he lives.
This is only the beginning.

ASAN organised a grass-roots internet protest including an online petition and letter writing initiative against this campaign. Due to overwhelming pressure and objection from the autism and disability communities, on the grounds that the campaign further stigmatized people with disabilities, the ads were pulled by the agency. In his critique of the Ransom notes campaign Kras (2010) says the following:

“These ads depicted childhood psychiatric conditions as problems that need to be fixed and children with these conditions as abnormal outcasts from society. Their — or, rather, their parents’ — -only hope is to pay someone money to get them liberated from their disorder and returned to normal society. (n.p.)

Here the medical model of disability is confronted with the social constructivist model of disability with the activists using the latter to claim that the attitudes promoted in the ads further disable the individual diagnosed with the condition.

It is interesting to note that people may move along the continuum of attitudes toward cure and acceptance, dependent on their individual circumstances, environmental factors, and the social and political climate. Many parents like Estee Klar stand for the acceptance of their children, but started their journeys with autism, by looking for treatments and possible cures, and to this day use the treatments they have found effective. Even among people with autism themselves there are a variety of attitudes toward cure. Sue Rubin, a woman with autism, (cited in Ortega, 2009) says she belongs to the ‘cure group’, and thinks a cure for autism would be wonderful. Reflecting another point on the continuum, John Elder Robison (2009), a man also on the autism spectrum, believes that a cure should not be a focus but rather there should be a focus on treating the parts of autism that cause the most distress. And Ari Ne’eman from ASAN (2012) states ‘for many of us, the prospect of cure and normalization denies essential aspects of our identity.” (n.p.) This may seem as though he is rejecting any treatment or intervention, but that is far from the case, as he promotes the use of supports that enable the individual with autism to function more effectively in the world, without the need to remove their autism (ASAN, 2012).

Baker (2011) asserts that for society to respond effectively to these issues, through policy innovation, it must embrace multiple understandings of disability including responses to the problem such as cure and acceptance, and despite the obvious tension between the responses, there is value in discontent, as without such interest from passionate proponents issues fall away from public and systemic agendas.

Conclusion

Neurodiversity is a newer concept within disability studies and provides a counterpoint to the medical model of disability. Neurodiversity uses both strategic essentialism and social constructivism to argue for the acceptance of people with autism. Many people with autism have their condition framed by the medical model, which asserts that, the desirable state of being is ‘normal’ functioning of the physical and psychological body, and that a return to this state, via treatment and ultimately cure, is desirable. There are many tensions between these two agendas that have been played out publically with families, organisations and celebrities promoting the elusive cure, and neurodiversty activists promoting acceptance, on the grounds that difference from the norm is a part of the human spectrum. Attitudes toward cure and acceptance are not fixed and cannot be ascribed as belonging to one group or another. What we can do is aim to understand how strong public discourse on these matters fuels policy agendas.

References

American Psychiatric Association. (1994). Diagnostic and Statistical Manual of
Mental Disorders. (4th ed.). Washington, DC: American Psychiatric Association.

Autism Awareness. (2008). Autism awareness ad.
http://www.youtube.com/watch?feature=player_embedded&v=_7IFs3cIRak Accessed 7/6/12

Autistic Self Advocacy Network. (2012). Autism acceptance events and their history.
http://autisticadvocacy.org/2012/03/autism-acceptance-events-and-their-history/ Accessed 7/6/12

Autistic Self Advocacy Network. (2012). Position statements.
http://autisticadvocacy.org/policy-advocacy/position-statements Accessed 7/6/12

Bagatell, N. (2010). From Cure to Community : Transforming Notions of Autism Historical Trends Influencing the Emergence of an Autism Community. Ethos: Journal of the Society for Psychological Anthropology, 38(1), 33-55.

Baker, D. L. The politics of neurodiversity: Why public policy matters. Boulder:
Reinner

Belkin, L. (2010) The false profits of autism. New York Times Parenting Blog
http://parenting.blogs.nytimes.com/2010/02/02/the-false-prophets-of-autism/ Accessed 6/6/2012

Bettelheim, B. (1967). The empty fortress. New York: The Free Press

Bound, K. (2008). ‘Are you sure, sweetheart, that you want to be well?’: An
exploration of the neurodiversity movement. Radical Psychology: A Journal of Psychology, Politics & Radicalism, 7.

Davidson, J. (2008). Autistic culture online: virtual communication and cultural expression on the spectrum. Social & Cultural Geography, 9(7), 791-806.

Garland-Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press

Grinker, R. R. (2007) Unstrange minds: Remapping the world of autism. New York: Basic Books.

Herbert, J. D., Sharp, I. R., & Gaudiano, B. A. (2002). Separating fact from fiction in the aetiology and treatment of autism: A scientific review of the evidence. The Scientific Review of Mental Health Practice, 1(1).

Klar, E. The joy of autism. http://www.esteeklar.com/ Accessed 7/6/2012

Kras J. F. (2010) The “Ransom Notes” affair: When the neurodiversity movement
came of age. Disability Studies Quarterly, 30(1)

McGann. P. J. & Hutson, D.J. (2011). Sociology of Diagnosis. Bingley: Emerald
Group Publishing Ltd.

Mindd Institute. (2012). Mindd Overview. http://mindd.org/s/archives.php/107- Disorders.html#autism Accessed 7/6/12

Ortega, F. (2009). The Cerebral Subject and the Challenge of Neurodiversity. BioSocieties, 4(4), 425-445.

Posavad, J. (2009). Acknowledging Mother’s Lived Experience of Raising a Child with Autism: A Phenomenological Inquiry. Unpublished Thesis. Faculty of Child and Youth Studies, Brock University: Ontario

Robertson, S. M. (2010). Neurodiversity, quality of life, and autistic adults: shifting
research and professional focuses onto real-life challenges. Disability Studies Quarterly, 30(1)

Robison, J. E. (2009). The “cure” for autism, and the fight over it. Psychology Today.
http://www.psychologytoday.com/blog/my-life-aspergers/200910/the-cure-autism-and-the-fight-over-it Accessed 7/6/12

Rocque, B. (2010). Science fictions: Figuring autism as threat and mystery in medico-
therapeutic literature. Disability Studies Quarterly, 30(1)

Shakespeare T. (2006). Disability rights and wrongs. London: Routledge

December 27th, 2011

So what happened to 2011. It went somewhere. 2011 was reminder that things must come back into balance and that life as we know it is fragile. Autistic life is even more fragile still. If you want to be out there doing it every day, whatever it may be, then you walk a fine line. Sometimes you may burn brightly and others you err on the side of a darkness that threatens to consume your very soul. My 2011 had me walking the fine line. Travelling to Canada to present at a feminist conference and winning a new job to ending up questioning my very existence and trying to answer questions that only depression can pose. So at the end of the year I have said goodbye to a long association with Autism SA as an employee and a Board member and I am looking forward to just being a part of the rich autism community in SA. 2012 will bring new things as I consolidate and look for new work and healthier work/life balance. I am putting it out there, to the universe, to bring in the balance, the give and the take, the passion and the reprieve, the joy and the sorrow, and the hope and the fortitude to see me through.

speaking and art

April 21st, 2011

I finally bit the bullet and bought dictating software. So now begins the task of training the software, which thus far seems to be pretty easy. In fact, I think that this software has come along leaps and bounds since I last t time I tried it.  I gave this blog address out to someone so I thought I had better update the blog. The start of   2011, has been tumultuous to say the least. Along with world events, work and life events have taken some interesting turns. I have begun lecturing at the University one day a week. I am developing a new topic entitled    –community development, funding and tendering for human services. This has been a much-awaited challenge and has been a source of much enjoyment. To say I’m on a steep learning curve would be an understatement. I have very much enjoyed testing my existing knowledge and gaining new knowledge in order to develop and deliver the topic.

 

Things on the work front seem to come in cycles. We have experienced some real upheavals including the untimely death of a colleague. However, I am heartened by the fact that we can move forward and continue to deliver some amazing programs to people living on the autism spectrum. The major highlight has been the delivery of a filmmaking boot camp to 15 teenagers on the autism spectrum. In five days, these young people had the opportunity to work with professional filmmakers learning the craft of scripting, storyboarding, filming, editing and acting in short films.  The culmination of the week was a public screening short films made.

 

I’m also happy to have been accepted to present a paper at the Asia Pacific Autism Conference in Perth. Along with a colleague I will present the findings from a trial of the use of Acceptance and Commitment Therapy with adults on the autism spectrum.

 

A wanted to write this blog to also capture some thoughts I had after attending a two-day workshop.

 

Last week I had the opportunity to attend ‘delve’ a two-day experiential workshop for disabled artists.  Artists were able to work with professionals in either scriptwriting or new media. Robust discussions were had regarding identifying or not identifying as a disabled artist. So much of these discussions or arguments get caught up in the language itself and often people fail to realize that they become constrained by the language. So much of what we say occurs within context or culture. Much of our experiences as artists or people with disabilities are subjective.   So in some ways it is really difficult to compare our experiences with that of another artist who lives with a disability.    Some people say that art by its very nature, expression, is political.    Some people say that their art is not political, that their art is not about disability, and yet others say that their experiences, intrinsic to who they are, come through in the art anyway.  Language can be awkward and not allow us to express fully the things that we would like to express.   Art, however, can transcend the inadequacy of language.    Speaking to each other through our art, we can find ways to express the things we find it difficult to express when we use language alone. Disabled artist, artist with a disability, artist, human being– are all about, how at any given time, we experience the world, and how we choose to convey that experience.

When I was writing, in the scriptwriting workshop, one of things I did was to deny my own experiences. I said out loud to the group –I’m sick of it all being about me. I wanted to write about someone else’s experience. Saying this out loud became an interesting phenomenon. I am not sure that I was being entirely honest with myself, because I am looking for ways to tell my story through art but I guess I’m not looking to repeat some of the clichés, the endless clichés that I see around me. Apparently clichés sell, but I hardly think I’m in the game for selling. Selling out is another story.  Disabled artists, disabled writers, disabled activists, are often accused of selling out. Selling out to what, I am not sure. So how does one make art with integrity, this has to be one of the questions that get answered whether you identify as disabled artist or not.  Then sometimes you have to realize that when you make your art you have no control over what the audience thinks of it or even whether they think you are selling out.

 

Happenings

November 2nd, 2010

This year I was once again given the opportunity to attend the Women’s Institute on Leadership and Disability (WILD) and again what an amazing life changing and affirming experience. Meeting old friends and making new friends and seeing the transformation of the lives of women with disabilities from all over the world. This year the Gender Disability and Development Institute was attended by 53 women from 42 countries and representatives from aid agencies and representatives of the US Government. Again there were critical conversations about how to include women with disabilities in development initiatives around the world. While I was in the USA I had a great opportunity to do an interview with the Autism Women’s Network, the transcript of which can be found here. This interview explores a range of things including WILD and perspectives on the autism spectrum.

Parallel to this there was another program being run by the Gender Consortium of Flinders University which invited regional Leadership fellows to Australia for three months for an intensive learning on gendering development in the Asian region. The culmination of this was a symposium Inclusion Matters: Gender and Disability in Local and Global Contexts and the great presentations can be found here. On the same weekend a group of women got together in solidarity and formed Women with Disabilities South Australia (WWDSA). This is an important local action as women with disabilities are just not being heard in consultations outside of disability specific ones and even the disability consultations are not tuned in to the voices of women. It is ironic that even though we have powerful representative in Kelly Vincent MLC women’s voices are still quiet and some of the most vulnerable voices are the quietest.

On the work front Company@ Autistic Theatre has produced a wonderful new show called “Solving the Cube” in conjunction with a local high school. This show is designed to tour to schools as an interactive piece of theatre for social change.

On a personal note I have been driving now for 5 months and have been gaining more and more confidence on the road. I am also honored to have be selected to represent Women with Disabilities Australia on the Board of the Australian Federation of Disability Organisations.

Driving

April 13th, 2010

At the moment I am learning to drive. I am 36 years old and have Asperger syndrome and a movement disorder and I never saw myself driving. The lessons are not without their challenges. I have a good driving instructor he seems to be a natural teacher with intuition and most of the time he knows when to push and when to diffuse the situation with humor. My driving instructor talks a lot which can be distracting but he assures me that this is a strategy – he says when he gets quiet I will know I am nearly ready for the test. I am finding the multitasking a real challenge and have to consciously think through things when I do them (but this is the way with all new learning). I have never been able to to respond to left or right as I am not programed for it!! I have to really think about it. I can feel my confidence slowly building and I have caught myself enjoying driving occasionally- but the urge to cut and run from the whole process is still there .  It is the anxiety that is my biggest enemy – the hyper-vigilance has me jumping at normal events and second guessing my moves. The instructor says I have a ‘driving face’ which is a tense one. My skill levels are good – my fear is getting in the way. This is the story of my life – fear getting the way – complex and insidious. I am however determined to overcome that fear and experience the freedom of driving.

I can empathise with Daniel in this article by the ABC. The driving program that Daniel is involved in offers people like us a opportunity to learn that is tailored to our needs and it would be great if it could be replicated across the country.

The NAS in the UK has their own advice about driving. I am interested in this BBC Doco coming soon.


Web music player
Quantcast r-word.org
  • Tumblr
  • Facebook
  • YouTube