~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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15 June 2009

Autistic Pride Day: Part 1


Autistic Pride Day is June 18th!

I asked group members from Portland Autistic Self Advocacy Network, PDX ASAN, to share a few personal blurbs on what Autistic Pride Day means. For many of us, this is the first Autistic Pride Day we will celebrate.

"Autistic Pride Day is about celebrating and supporting the efforts of the neurodiversity and Disability Rights Movement. On Autistic Pride Day we connect with other Autistic people and work to build a sense of community and belonging. We ask ourselves questions about advocacy and our community's future:
  • How can we work to create a better, more inclusive society for all autistic people?
  • How can I take the message of neurodiversity and 'Nothing About Us, Without Us!' to the public?
  • How can I work with other Autistic people to build a stronger Autistic community?
  • What must we still do to build a community that all autistic people can have access to and feel a sense of connection toward?" -Ari Ne-eman


"To me, Autistic Pride Day is a day that should be acknowledged and celebrated. It also means that there is hope out there that autism could one day finally be accepted by society. It means standing up for who we are. Fora example, in society it would be 'rude' to not accept self-stimulatory behavior as part of both who we are and as a part of our culture. It means taking pride in our own abilities and differences in abilities and accepting our unique traits and characteristics." -Annie


"Autistic Pride Day is a time to celebrate our culture and support our collective resolve to counter and correct the myths that society appends to the autistic experience. Mindful of movements, past and present, that have worked to advance social and political justice of a generally disfavored class of citizens (e.g. gay rights, women's rights, the rights of African Americans). Autistic Pride Day must continue to work toward the rights of autistics to be integrated into society as much as possible and, as primary stakeholders to our outcome, to represent ourselves in the dialogue about our future. As this day is also a "pride day," Autistic Pride Day is a day that people like me--with a neurologically different brain--are able to step back from our worries and be together in a celebratory fashion. Like nations who have important holidays, Autistic Pride Day represents the ultimate holiday the Autistic nation celebrates. Autism and Autistic Pride Day rock!" -Cole K.


"I do not like to get teased about how others think of my autism or my anxiety about things--how I like cats so much and how I buy stuff that has cats on it and do things in repetition. But you know what, I am autistic and I am proud. People who are different deserve the same human rights and respect as anybody else. I suggest for people to strive to understand autism rather than fear it or eradicate it." -Anonymous


"Autistic Pride Day to me means being able to feel comfortable about being alive. To be able to be myself while not being stigmatized by ignorance and backwards attitudes. To be able to live life openly and not have to hide something that is a big part of my life from an unenlightened public. This is my life, and it is unjust to live in a world where I am denied the opportunity to have a completely fulfilling life because I have Asperger's." -Jake Harrison 


"If you look up "autistic" on Dictionary.com, you will be presented with the following: 

Psychiatry. a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment.

This is only one example of the widespread misinformation on Autistic Spectrum Disorders. Autism is still mainly assumed to be childhood psychological ailment rather than a lifelong neurological type. We are not un-aging emotionless robots." -Phoebe Loomis


"We are all unique human beings in our own ways, but I like the fact that my brain is wired to be different from others. Nobody is like me. I can paint and write because of my autism. I don't ever want anyone to feel sorry for me because of my autism because it has made me creative and able to create so much beauty in this world." -Julia Rosenstein 


"Thinking on the title, Autistic Pride Day, it becomes obvious that there is another autism-related camp that does not support the rights of autistics to be recognized as valid equal people. So we have a day--one day--of autie/aspie pride as respite. I'm but a self-proclaimed anthropologist crouching in the corner, watching and waiting to see what will be." -E. A. 


Autistic Pride Day, new on the Autistic/autism forefront, is not necessarily ingrained in our community. I did receive a few less enthusiastic responses from two PDX ASAN members. And these responses are quite valuable, as they point out the diverse reactions Autistic Pride Day my garner from the community:


"To be honest, I have never really *gotten* pride days. For instance, I've participated in Gay Pride Day marches but that was less to show 'my pride' and more to be an un-ignorable mass to the general public a la We're here, we're queer, get used to it!" -Anonymous


"I really don't know what Autistic Pride Day means to me. It has not been long since I was diagnosed, only two years since I have known. I have been to Gay Pride Day parades and events, and though I don't consider myself gay, I did enjoy the spectacle and how marvelous it was for those that attended to feel jubilant about their situation. I am not sure I feel jubilant about being autistic though." -Anonymous


Should we do more to promote Autistic Pride Day in the future? If so, can we expect that one day it will be like Gay Pride Day? How can we make Autistic Pride Day more visible, accessible, and meaningful? Should we bother? What do YOU readers think? 

Okay, I know. I got a little deep there. So, I'm just going to come clean and admit that pretty much the whole last paragraph I wrote came from the mind of my brilliant autistic mentor who prefers to remain anonymous. Thank you Anonymous Mentor. You rock!


What is PDX ASAN doing for Autistic Pride Day? We're meeting at Pioneer Courthouse Square, dressed in autie/aspie pride tees (no puzzle pieces!) to join together and pass out fliers to encourage public interest and enlightenment. This gathering will shun pity and negativity and instead promote positivity, acceptance, and awareness.

03 June 2009

You Want Summa Dis!


[Disclaimer: I fully endorse autism-related support groups that are autistic-friendly, empowering, positive, and proactive. I would like to both acknowledge and thank all autistic people, clinicians, doctors, parents, therapists and other professionals who lead these groups in inclusive respectful ways.]

Imagine my surprise when I received the email response below from a potential attendee/supporter of the Autistic Self Advocacy Network - Portland chapter. The response below is a reaction to the brief email I sent to this person who requested further information about our group. I advised this person to bring something of interest to share with our group, as we like to encourage the passionate interests of autistic people:

Bring something to share with the group?!!! That last part just ruined the whole idea of attending for me; it makes it sound like a daycare for the awkward! What is it like socially awkward show & tell or something? I think I might just stick with Wrong Planet if that's the case...

At first, I was horrified, but then I thought better and decided to turn this email into a blog post about the burning opposition and inner seething many autistic adults feel toward groups led by *well-meaning* clinicians and therapists.

Just because a person is autistic and may have specific needs, does not mean he or she will jump at the chance to join a patronizing group led by a clinician or therapist who may not be sensitive to the real needs of autistic people. Many autistics are on the lookout for groups that lay the foundation for empowerment, respect, and self-advocacy. Pessimistic support groups focusing on cures, pity, and what's wrong with autistic styles of being, are void of real-life application for the self-determined autistic.

Why should the self-determined autistic have to go about life feeling as if he or she is a detriment to society, or that they should never have been born? Who decided that autistic individuals should reach adulthood only to continue carrying a torch blazing with hopelessness and regret? How does this foster self-esteem? Is prolonged pity proactive or pathetic?

It often radically stunts the development of autistics to grow up in an environment where there is a constant sense of sorrow and tragedy. How is the autistic individual supposed to reach a functional sense of autonomy while learning, or even attempting, to survive in such a counterproductive atmosphere?

The constant barrage of negativity surrounding autism--including twisted media hype, fear, and panic--needs to stop. As it stands, there is no cure for autism. That noted, valuable resources should be directed toward quality of life oriented studies, as well as services intended to enable and integrate autistic people.

This brings me to the importance of organizations such as:
I would like to mention a new autistic-run magazine created by Sharisa Joy Kochmeister titled The Voices and Choices of Autism, set to debut later on this month. This is a brilliant example of what autistic people are capable of accomplishing if they are supported and taken seriously, as well as encouraged to defy medical and pity-based odds and barriers.

Amazing things happen when autistic people refuse incorrect assumptions and myths and instead persevere by setting goals related to their passionate interests.

*If you're interested in a free subscription to The Voices and Choices of Autism then email Sharisa (who gave me permission to list her email address here) at:

sharisajoy@yahoo.com

.............................................................

So here's the second email response I received from the above temporarily-disgruntled-autistic who showed interest in the Portland ASAN chapter--after I further explained our group mission:

Ah, then I apologize for my previous rude outburst. From what it looks like, 99.95% of these groups are parent support groups, with maybe only a minor populous of actual autistics, kind of like Autism Speaks (zing?), so my initial impression was patronization. Now with a clear head, I see I was way off.

There's nothing like a successful outcome for the autistic alchemist who sets out to transmute opposition into understanding.