Convention on the Rights of Persons with Disabilities – NGO Shadow Report

Leading disability organisations have partnered to form a project group which is compiling a Shadow Report on Australia’s implementation of the Convention on the Rights of Persons with Disabilities (CRPD).

The overall aim of the Shadow Report is to make recommendations to the United Nations Committee on the Rights of Persons with Disabilities. These recommendations will provide the basis for the United Nations recommendations to the Australian Government regarding Australia’s implementation of the Articles of the Convention. The main focus of the Shadow Report will be reporting the extent to which Australia has implemented its obligations under the CRPD and to provide recommendations for future action by the Australian Government.

The project group gratefully acknowledges the pro bono support DLA Phillips Fox in providing a team to draft the report and assist with facilitating consultations in each State and Territory in Australia. The project group will be inviting disability advocacy, representative, and legal organizations to provide information about the lived experience of their members, clients and constituents with disability. These stories will identify the degree to which persons with disabilities’ human rights are protected, respected and fulfilled.

The release of the Shadow Report outlining the information collated, including recommendations, is expected prior to the Federal Government submitting its Progress Report to the United Nations in August 2010.

Please complete survey at;

http://www.disabilityrightsnow.org.au/node/15

I began to get tired toward the end of this year and was wondering how I would keep going under the pressure of everyday life. My mind is such that I am driven to do and to achieve not only for myself but on behalf of others. I have had time to rest and reflect and realise that it will always be my lot to be the way I am!!

2009 has seen many changes and machinations in the autism self-advocacy world and what I am seeing is a third-wave of advocates who a striving for a more rights based recognition of autism and autistic people. I am tired and as much as I’ll keep soldiering on, I am grateful for the new blood even if there is a bull at a gate mentality at times.

I remember being a younger activist  – not just taking a stand on autism and disability but on refugee issues, global economics, war, unemployment, youth issues, gay rights and more. I approached every issue with fervour and could be found at the front of picket lines and travelling from state to state to set up camp on a new issue. I was an arts student with time to spend on developing concepts, campaigns and time to dream about a better world. I was not only dreaming I was taking action and I believed wholeheartedly that every little bit counted. I think that some of the more seasoned activists around me would have looked at me and my fellow newbies with a mixture of amusement and knowing because they had been there done that – so to speak.

Sometimes now when I read about the actions of the new wave of self-advocates and activists in autism I have a mixture of the feelings that I suppose those elders had when I was younger!

There are some of us who have been there and done that in a lot of ways and yet there is still so much to be done. We do have a legacy which is a luxury and not a luxury to be taken for granted.

Now is a good time to reflect on some of that legacy and the things that inspire me!! (some links are to old sites)

Autism Network International Founders (1992) Jim Sinclair , Donna Williams and Kathy Lissner Grant. History here IMPORTANT READING

Jim Sinclair’s Don’t Mourn for Us

Martijn Dekker and InLv and IRC channel #asperger

Tony Langdon

Oops… Wrong Planet Syndrome (1995 – 2005) Archives here

Aspergia.com (no content available – you had to be there!)

These are a snipet of my introduction to the autism world many years ago when resources seemed sparse. Today there  is a veritible flood of information, options, opinions, resources, forums, chat rooms and the like. There are many activists and advocates awakening to the cause and looking toward the horizon with a sense of importance, boundless energy to give and rights to fight for.

I am a little bit tired but not nearly as tired as some who went before me – all that I wish for is that we honour the legacy of a movement. Spend some time looking back before you run foward.

Since time immemorial, people with disabilities, whether mental or physical, have been the subject of scorn, ridicule, fear, demonization, intolerance, ostracism, social and economic marginalization, and, all too often, outright indifference – These practices have been universal and no nation on earth is guilt free (Beverly & Alvarez, 2003).

The current campaign being run by Autism Speaks perpetuates these age old practices on every level and is a step back into the veritable dark ages of the experience of disability (bearing in mind disabled people have only just come into the light). In a turn out for the books even the USA, Autism Speaks’ own home country has recently signed The UN Convention on the Rights of People with Disabilities, which by the way the ‘I am Autism’ video directly contravenes.

See for example Article 7.3:
States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.

In ‘developed’ countries the disability rights movement has history spaning over 50 years, a movement that has fought for the rights of people with disabilities, having them enshrined in law, further, demanding social, cultural and economic changes that enable full participation in society. Implicit in the actions of this rights movement is the fundamental idea that people with disabilities are in fact equal as human beings not, lesser beings, animal- like, feeble, immoral, defective or subjects of demonic possession (some of the preferred terms of the 19th and early 20th centuries). Autism Speaks members seem to have been sleeping whilst the enlightenment occurred because they don’t seem to understand the fundamental rights of all people to live is a society free from discrimination and in particular hate speech. Replace the word autism in the video ‘I am Autism’ with any other characteristic or condition experienced by the human race and there would be outrage. Disabled people feel that often their experience is last frontier in terms of discrimination; if this is the case then autism remains a further frontier within the last frontier.

Autism and Asperger syndrome are developmental disabilities often referred to as Autism Spectrum Disorders (ASD). For many self advocates on the spectrum the term ‘Autistic’ is the term chosen for self reference. Autism is historically characterised as a severe disability that has attracted many stereotypes and misunderstandings. There are said to be 1/160 Australians with an ASD equating to an enormous population with a diverse range of difficulties and needs and equally as diverse range of skills, talents and accomplishments. Much national media attention and political attention has been payed to autism of late, however there seems to be a distinct lack of Autistic voice amongst the national conversation occurring. With rhetoric thrown around such as epidemic, tragedy, emergency, criminals, burdens, problems… how does an Autistic voice emerge?
For an Autistic voice to emerge the first thing that an Autistic person must do is recover, not from their autism but from the disabling environment they are expected to develop in. They then must set about in the task of educating themselves in the social ways of the world.
The Autistic person works from a different platform that does not necessarily prioritise social information. To operate in the social world requires extensive study of human beings and human interactions and the application of intricate sets of maps a rules derived from that study. The extent of understanding derived from this intensive study can well surpass the casual observations of others. Another important quality in developing a voice is resilience. Opportunities for the Autistic person to practice resilience are abundant, from early days in the school yard to the halls of larger institutions and the complexity of adult life. Over 90% of people with an ASD experience bullying within their lifetime and it is only through sheer resilience that they survive. Although socially impaired the Autistic person may serve as a barometer for social change as they quite often stand off to one side observing the main event and reacting noticeably to even the most subtle change; like the frog is to the environment, the Autistic person is to society.
Verbal communication for Autistic people can range from being not present to being superior on standardised tests, none the less every Autistic person has something to say and as a leader I am extremely cognisant of this fact. To be a leader requires a certain amount of social sophistication, enigma and a lot of hard work, it has been argued that Autistic people are incapable of all of these things. As an Autistic person and a leader I would argue that some of us are in a unique position to become leaders and can offer a unique set of skills to any leadership forum. I myself have served on nine Boards and Steering Committees holding positions such as Consumer Representative, Vice Chairperson, Chairperson and Convener. I currently Co-Convene the Autistic Self Advocacy Network (ASAN) of Australia an affiliate of ASAN in the United States.
I am also aware that leaders have the responsibility to foster young leaders. It is the aim of ASAN to offer leadership opportunities to all Autistic people who wish to explore them, to involve Autistic people in self advocacy at a personal, local and national level.
I recently had the opportunity to attend the 4th International Women’s Institute on Leadership and Disability hosted by Mobility International in Oregon, USA. I was one of 25 women with a disability to attend and the only Autistic woman. This cross disability program was an invaluable leadership experience that also allowed me to asses the global position of Autistic people in leadership. I can point to a handful of leaders around the world, some pioneers who have been on the scene for years and some new faces, but as a movement we are young and emerging.
We have a lot to learn and could do with a little support but most importantly we want to be taken seriously at a national level. We are still continuously marginalised in conversations about us. As the old adage goes ‘Nothing about us without us’. We are here; we do have many voices and strong emerging leaders.

The development of an online network of self advocates: An application of technology to overcome social barriers inherent in a disability.

Introduction

The Autistic Self Advocacy Network of Australia had its beginnings in technology in the late 1990’s when adults diagnosed with an Autism Spectrum Disorder (ASD) first began to have an online presence in Australia. Adults began building their own websites and started reaching out through online forums and web based ‘chat’ applications such as Internet Relay Chat (IRC). Since that time a network of support has developed through the use of technology that enables otherwise socially isolated adults to interact, share thoughts and feelings, troubleshoot issues and provide support to younger people with an ASD. Interviews with adults with ASD who are part of this network have been conducted and this paper will explore their experiences with the technology of the internet and reflect upon relevant literature (pseudonyms are used where requested). The aim is to give the audience an insight into the lived experience of an evolution of the use of the Internet by people with ASD and explore the impact that this technology has had and is still having on their lives. Ultimately what will be demonstrated is the organic process of the development of a network of people with a disability that was and is made possible by the technology of the internet.

The Autism Spectrum

Autism Spectrum Disorders, Asperger syndrome and Autistic Disorder are Pervasive Developmental Disorders characterized by a triad of impairments in the areas of communication, socialization and imagination (APA, 1994). The social and communication challenges faced by a person with ASD include an inability to use language as a communication tool for effective social interaction and a lack of understanding of the rules that govern verbal and non-verbal social interaction, this may typically lead to isolation from peers, failure to develop friendships and close relationships, and an increased likelihood of becoming the victims of bullying and harassment (Attwood, 2007). Davidson (2007) asserts that perceptual differences associated with autism hinder typical communication with the result that the words and actions of others can be unpredictable, and indecipherable or even scary for those on the spectrum.

Many first person accounts of ASD (Williams, 1996; Lawson, Hadcroft, 2005; Holliday- Willey, 1999) speak to this social isolation and bewilderment in the face of social interaction that seems for the most part to come quite easily to the typical population. First person writing also relays blow by blow accounts of the bullying that seems to befall many people with ASD:

“During my time in 2W1 I continued to feel vulnerable and anxious, like being rolled up inside a giant carpet and left to find my own way out. Whenever I panicked or froze, the bullies were always ready to set upon me. In the play court, if I hadn’t managed to hook up with Ian, the vultures would descend upon me.” (Hadcroft, 2005, p. 69)

Much of the treatment for ASD is aimed at addressing the core deficits and teaching communication and social relatedness skills (Attwood, 2007; Smith Myles & Simpson, 2001 ; Gray, 2000). However for many with an ASD learning skills that enable them to operate in a majority culture (a social one) still leaves them in the position of being a minority within that majority.

Technology – Overcoming Barriers and Accessing Social and Cultural Spaces

In an attempt to address this minority status many people with ASD who can access computer and internet technology have turned to this medium to have a set of social and cultural needs met. In discussing intervention for adults with ASD a leading psychologist in the field suggests:

“The adult [with ASD] may benefit from joining an Internet support group or chat room. This can provide a sense of belonging to a distinct and valued culture and an opportunity to consult members of the culture for advice.” (Attwood, 2006, p. 49)

As highlighted by McLimens and Gordon (2009), the creator of the World Wide Web (WWW), Tim Berners-Lee, considered his invention to be a social one rather than a technical one. Examples of Berners-Lee’s social invention are becoming more apparent now with the advent of Web 2.0 technology that allows user content to be shared more readily via the WWW with sites such as MySpace, Facebook and user generated weblogs or ‘blogs’ becoming prolific.

However back at the turn of the century Web 2.0 applications were not available and users had to be quite technologically advanced to post and manage web content and to download applications that would allow them to ‘chat’ via the WWW. None the less people with ASD began to emerge onto the Internet and started to make connections to information and to each other. One of the first Australian sites authored by a man with ASD emerged in the mid 1990’s. Others who had similar experiences were attracted to this man and began communicating with him via email discussion lists.

Tony the man that developed one of the first ‘first person’ ASD site in Australia was diagnosed with Asperger syndrome as an adult and found few resources that met his needs.

“The biggest benefit [of the online support network] is the knowledge that “you are not alone”, which was one benefit I didn’t really have. That in itself was one reason I started writing on the web in 1995. Support for me has been somewhat of a two way street, giving as much as getting.” (T. Langdon, personal communication, June 12, 2009).

For Tony online support has been a continual source of interaction with other people on the autism spectrum and a way of developing and maintaining a circle of friends.

Finn (1999) highlighted many reasons as to why online groups were emerging as an important development in self-help for people with disabilities. He suggested that these groups would eliminate a number of barriers including time and distance, oral communication issues, the challenges of face-to-face interaction, and interpersonal difficulties and offer some anonymity to users who may not wish to disclose their identity. This would seem to offer people with ASD who have social and communication barriers a chance at a forum in which some of these barriers are removed.

Cameron (‘Cameron’, personal communication, June 12, 2009) a young man who is now 22 years old started using online support groups in 1997 when he was just 11 years of age. His mother encouraged him to seek support after he was diagnosed with Asperger syndrome. For children with disabilities who often have social skill deficits and are prone to social rejection, the virtual environment may offer a social context that does not accentuate their deficits, and provides a place where they are more likely to experience positive interactions with their peers. (Raskind, Margalit & Higgins, 2006) For Cameron this has certainly been the case. He first started using a supervised chat group called AS-Kids and his initial aim was to ‘find out info’ about autism and Asperger syndrome. Over time Cameron has joined online chat rooms using Internet Relay Chat accessed through a downloaded program installed on his computer. Cameron considers himself to have ‘grown up’ in these chat rooms and returns to the rooms on a daily basis to seek the support of his online friends and mentors. Cameron uses the chat room to talk about everyday issues and to share his interests with online friends. These online friendships have endured over time and are ones that Cameron and his mother consider to be pivotal in his development.

Merlin has been Cameron’s online friend and mentor for the past 11 years. Now aged in her fifties Merlin came to the internet looking for answers around the same time as Cameron. Merlin relays her initial experiences:

“When I realized that I may have Asperger Syndrome, I tried to get information from the local library. There were long waiting lists on the few books available, so I learned to use the internet by trial and many, many errors. I heard about AS in August, 1998 and was starting to explore the net a fortnight later. Mostly I went to personal pages and then found OzAutism [an email discussion list]. A few months later I started to chat.” (‘Merlin’, personal communication, June 12, 2009).

Merlin’s trial and error approach to internet meant that she had learnt a lot along the way and she soon found she was able seek and offer support and experience the benefits of growing friendships.

“I used to understand friendship as hard work. I now regard online friendships as fun and it is a constant pleasure to realize that there is a group of people who care about the good and bad things that happen to me. I also like knowing that sometimes I can help online friends in ways that I cannot help some of the people in my daily life because I do not really relate to the way they think and live.” (‘Merlin’, personal communication, June 12, 2009).

On recommending the internet as an option for adults with ASD looking for friendships Attwood (2007) reiterates much of what Finn (1999) put forward as rationale for people with disabilities adopting the internet as a social support tool. Attwood highlights the advantages of developing friendships over time without the distractions of extraneous social and sensory information. He also acknowledges that “genuine and long-lasting friendships can develop over the Internet based on shared experiences, interests and mutual support.”(Attwood, 2007, p. 87)
Sarah (pseudonym) a woman in her thirties with ASD, came to the internet in the year 2000 seeking support for social issues she was having. In the early 1990’s she was diagnosed with atypical autism but coming from a rural area had no access to support and intervention. Thinking that very few people shared her issues she began an internet search for ‘autism in Australia’ and found Tony’s site which lead her to contact him and to seek out others with a diagnosis. Sarah reports that she found a degree of social success online that she had never experienced ‘in real life’. She found that a lot of the social conventions required in face-to-face interactions could be bypassed on the internet and that people were more receptive to her ideas. This in turn served to build her confidence and sense of competence.

In discussing the social positioning of people on with disability Bowker and Tuffin (2007) state that online access offers alternative frameworks for positioning people with disabilities in the social world. They studied the dominant patterns in the textual outputs of people with disabilities online:
One dominant pattern, which was evident in the data, was the way people with disabilities were evaluated positively. This talk of positive subjectivity included the idea that many of the social and psychological barriers, which had formerly constrained independent demonstrations of ability, were eliminated online. Freed from such stigmatising negative judgements, online communication afforded people with disabilities a rare opportunity to exhibit their value (Bowker & Tuffin, 2007).

In the late 1990’s the web company Yahoo! developed its online groups application and specific Asperger and autism groups started to emerge. A number of Yahoo! based groups in Australia have played an important role in the development of the online ASD community. The pivotal role of Yahoo! Groups in the development of ASD identity has been acknowledged by Brownlow (2007) who used Yahoo! groups as a representative sample for her study of the online construction of the Autistic Individual. Groups discussing Autism spectrum Disorders and groups for individuals with ASD focussing on issues such as relationships, intimacy, sexuality, advocacy have attracted hundreds of members from around Australia and thousands of members worldwide. Tony, Merlin and Sarah have played substantial roles in bringing these groups into existence in Australia and maintaining them for almost ten years.
In 2005 Tony, Merlin and Sarah joined together and created an online discussion group aimed at combining their online efforts and advancing the issues of people with ASD who were using the internet. In the past four years they have continued to support each other and their community by taking action and creating national and international affiliations via the internet. Thus in due course the Autistic Self Advocacy Network of Australia evolved. Much of the work done by the original members parallels the work of many international advocates that pioneered the idea of an ‘autism culture’ online. With the advent of the internet, the major facilitator of communication for people with ASD, the evolution of a movement has occurred, a movement akin to the political movements of other minority groups (Davidson, 2007). The movement itself began with internet as a pivotal tool and its ongoing existence is facilitated by that tool, a tool that has been effective in removing social and communicative barriers for some individuals with severe impairments in these areas. Brownlow (2007) argues that the movement has also allowed people with ASD to construct an empowered identity which allows them to challenge expert views of people with autism and their abilities. As Merlin relates:

“My experience was that reading information about autism from professionals has often been very depressing. Many are very judgmental and present information from their observations, not our reality. The first time I felt any sense of hope for a better future was reading Tony Langdon’s site. It was a revelation to me that an Autistic could have a good life.” (‘Merlin’, personal communication, June 12, 2009).

Many individuals like Cameron described earlier continue use the internet as a daily tool for social interaction and it is for their benefit that individuals like Merlin, Tony and Sarah continue to advocate for the advancement of people with ASD whilst similarly benefitting from the support available online.

Conclusion

This paper has been a brief foray into the use of the internet as tool for overcoming the social and communication impairments posed by Autism Spectrum Disorder and demonstration of the lived evolution of a network enabled by the use of internet technology. The inventor of the World Wide Web Tim Berners-Lee intended it to be a social tool. There is little doubt that he recognised its potential but did he understand how liberating it may become for a group of people with social impairments. As demonstrated by the interviews and supporting literature the internet has enabled people with ASD to surpass barriers present in face-to-face communication and enabled them to find relationships that seem to be qualitatively different but equally as valuable as the relationships made by other individuals using face-to-face communication. These relationships have served to increase self-awareness and acceptance in individuals with ASD and allowed them to develop valued identities. Some individuals have chosen to use these relationships and valued identities to establish and further a movement that is beginning to have social, cultural and political implications for people with ASD. The use of the computer technology coupled with the internet has allowed people with ASD to challenge common perceptions held by professionals regarding their abilities and has allowed the articulation of previously unexpressed aspirations, ideals and values. Finally, the internet has offered a space, albeit virtual, for a group of people to belong to a community.

“Internet chat reinforced the understanding that most people have difficulties – but a peer group in which others have similar experiences gave me something that most people experience from early childhood – understanding.” (‘Merlin’, personal communication, June 12, 2009).