Tired Yet?
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
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.
Tags: activism, ANI, Autism, Donna Williams, InLv, Jim Sinclair, Martijn Dekker
I live in Ukraine. In my country there is little awareness of people with autistic conditions.
A brief 2009 foray into autism activism hes led me to believe the machinations of politics and alliances is not for me. Paradoxically, my first “group” activity entry in many, many years was in ASD activism earlier this year. I approached the initial invitation with caution,(as i was invited in…) then went ahead with gusto and fervour and idealism, and in the end, resigned from all positions and from the “scene” (which is what it is,) – preferring instead to continue on with a quiet life of special interests, home and parenting, and helping other ASD women in informal ways that are more suited to my strengths.
After feeling initially “shattered” by the antics and strategising within the autism activism scene, I settled into an end of year bemusement at it all. It actually reminded me of NT girls in a school playground, with all the ensuant and accompanying dysfunctions that can accompany that group. i have no interest in such things. Never did. Never will.
I have most faith in those individuals in the autistic community, who tend towards singular voice and singular approach and pursuits in their wish for better conditions for others. This is where I realise I belong. I now understand why people like Stephen Shore, Temple Grandin, Donna Williams and others believe they can be of more service and value pursuing their own process of education of others, in a manner that is free from the humourous realm of autism politicking.
I guess what people fail to understand is that history is destined to repeat itself over and over again because humans tend to behave in the same ways over and over again. People adopt a herd mentality and carry out their list of herd ‘shoulds’ without checking whether the action is helpful to themselves or others or true to their own beliefs and nature. The success of the people that Camilla mentions lies in the fact that they are true to themselves and lead by example – they embody the change they want to see in the world. If you want to see a change you have to live it – you can’t just beat others over the head with a change stick and expect meaningful lasting change. It is also the small things, the supportive conversations, the helping hand, the time you spend listening to others – whatever they have to say, that have a ripple effect in the world. Knowing yourself and your strengths is also paramount – too often people, Autistic and NT, are blinded to themselves.
I am looking forward to running a group next year for spectrum adults that focuses on self knowledge through mindfulness activities, exploration of values and values driven action and helpfulness.
i agree. It is when we have done the work on ourselves, that we find our strengths, our weaknesses and can then continue on being of service to humanity in a manner most befitting us.
There are those in the advocacy community who remain principled and steadfast in their understanding of what is required. And those who choose to pursue that approach in order to effect change, are worth “gold.” Of course, what is required is compassion, respect of others and self, in spite of our ASD issues, and a groundedness in a wish to conduct oneself with transparency, goodwill, straightforwardness and positivity. Of course, there are many like this.
What I cannot abide is brutality and bluntness on the one hand AND/OR silent strategising and lack of transparency and democratic process on the other.
Regardless of whether those particular approaches exist repeatedly throughout the course of history means little to me. And of course they do. Over and over and over again. The political paradigm requires it and in fact is born out of it…even thrives on it. The political paradigm, whether specific to the autism community or the mainstream political world is about power. And anyone who wants to effect change must have a very deep understanding of themselves and their own weaknesses and strengths and their own issues in relation to their own personal power dynamics. My view is a little reading on political theory and power dynamics as manifested in the group and the individual, is always a good read if one wants do enter into politics. Good leaders, good politicians and good activists understand this and will be attuned to the group mentalities and also the personal power issues specific to them and their own individualised makeup.
I think that is always the greatest dilemma for anyone who enters a politically driven realm of any form…how do we adhere to ideals and yet enter into an arena where the machinations of that arena requires in part, a kind of surrender of them? How can we attune ourselves most successfully to that reality? That is the paradox of politicking.
The other issue specific to the autism activism community is the particular issues many confront in terms of open and transparent communication, ToM issues, co-morbid presentations that may impact behaviour, and the kind of naivety that can impact our ability to read people and situations as clearly as we like.
My hope is those who enter into autism activism as representatives of others, pay careful attention to these, and attempt to remain attuned to these issues in the group and in themselves so that we can do the best we can for all autistics in a manner that is transparent and self-reflexive and self-aware.