Monday, April 10, 2017

Interview with Cindy FacteÂû- Autism Acceptance Day 2017

Interviewing Cindy Facteau, who has been an activist for many years:

My name is Cindy Facteau. I am pansexual, female-leaning gender fluid, and a PoC. I am autistic, and I have multiple mental health diagnoses (all anxiety based) as well as being physically disabled. I might also have more than a slight obsession with Doctor Who. :)

I'm 38 years old, and the mother of an autistic 9 year old boy as well as an autistic 19 year old man. They are my entire world. I am also the current President (and founder) of the Autistic Self Advocacy Network (ASAN) San Diego Chapter, and the former President of the Autism Society San Diego, where I served as a board member for 7 years. My husband is a former Marine (13 years of active duty service), a combat veteran, and during our tenure on Camp Pendleton, I served on the Commanding General's Special Needs Advisory Committee, in an effort to educate and gain services for military families with disabled family members. I've been involved in advocacy and activism of one form or another since the mid-1990's. I cut my baby activist teeth marching down the streets of San Francisco for what was then known as the LGBT rights movement. 

What is your life like as an Autistic person? (This should maybe be “What do want to say about autism that you think people might want to read?” because asking people “What is it like to be Autistic ?” might elicit the response, “I don’t know- what’s it like to be you?!!”)
My life is the same as anyone else's, to be honest. I have challenges. I require supports to be able to live my day to day life comfortably. I don't think that's much different than any other human being. In fact, sometimes, I wonder why people don't realize that everybody needs support to one degree or another. We all face challenges...I think it's society that attempts to dictate to us which challenges and supports are "acceptable" in comparison with others. This is one of the reasons functionality labels make me so angry. If a camera crew were to follow me around, they'd see me at my best and my worst. That's the human condition though. We all struggle. We all need assistance to some degree. We all need love and acceptance in order to thrive. 

I want to educate people. I want them to see autistic (and disabled) people as human beings that may be different, but just as worthy of love, happiness, acceptance, and success as any other individual. Unfortunately, society measures "success" in some very strange ways, which I do not always agree with. 

In fact, I reject the notion that society's definition of "success" is what makes a person better or worse than anyone else. It's become clear to me that my place is definitely in this community, crusading for equality, dispelling myths, and breaking through barriers. 

This community is my family. My two sons have practically been raised in Neurodiversity immersion. To hear my 9 year old happily proclaim "I'm part of the AUTISTIC!" gives me great hope for the future. My dream is that one day, disabled rights will be basic human rights, along with all of the beautiful intersectionality within our community (autistics, PoC, LGBTQIA+, etc.). Basically, until autistic and disabled lives matter, all lives will not matter. Equality cannot exist without acceptance.

What is the most joyful, fun, exciting thing [you can have more than one!] about being Autistic? do I answer this succinctly? I can't! I have a community full of friends who understand me, which was not always the case growing up in the late 70's and early 80's. They "get" me in a way very few people ever did until I found this community. I  learned to be my authentic self, and gave up attempting to "pass" for neurotypical forever. 
I see beauty in everyday things. The way the dust dances in the rays of sunlight that stream through the window. The soothing sound of my own heartbeat. The instinctive sense of empathy I possess for all people - even complete strangers. I love the bright, vibrant colors of the world, and my heightened sense of my environment and my own body make for a fantastic sensory experience that I could never begin to explain to someone who hasn't experienced it for themselves. 

I love having insight to help my own sons accept themselves as they are. We all share a diagnosis, but we are all different. I love the similarities that we share, but I love learning about our differences too. It's enabled me to support them in ways my own parents never could/would support me, and seeing them flourish is one of many reasons I am proud to be autistic. I don't think I'd have the perspective that is necessary to support them if I weren't autistic myself. 

What is the most thing about being Autistic?

I'd have to say the most difficult thing for me is knowing how far we still have to go in order to be considered equal to non-autistics. Every story about caregiver abuse and murder breaks my heart into a million pieces, and reminds me that while I've surrounded myself with acceptance and love from friends, colleagues, peers, and family, there is still so much more work to be done to ensure that our community does not have to suffer at the hands of the ignorant and those who would use those they should love and accept unconditionally to make themselves martyrs. 

We shouldn't have to ask to be treated like human beings. We shouldn't have to ask not to be abused and murdered.   

The worthiness of our lives should not be dependent upon some imaginary ideal of "success" or "potential" that we had no voice or input in creating. 

How has the Autism Acceptance Day/Month effort over the past seven years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now? 

Well, for one, I don't think it should be limited to a single month. Autism doesn't just magically disappear on April 30th! I'm all for education, but it disturbs me to see organizations that seek to capitalize off of what is essentially our civil rights movement. It's not limited to one organization, either. There are many organizations that make a LOT of money using "Autism Awareness/Autism Acceptance" as a guise for generating revenue, and that saddens me...especially because much of that revenue is never seen by the people who need it most. 

I do like the fact that we've moved past "Autism Awareness," because if you're not "aware" by now, you've been living under a rock for the past decade or so. I'd really like to see some genuine effort put into actual acceptance though, and not just spend an entire month simply replacing the word "awareness" with "acceptance." 

Acceptance...TRUE not a catch phrase, fundraising tool, or a campaign. It's societal evolution based on education and equality. Acceptance is not a month-long's a real shift in the paradigm of society. 

What does “moving beyond awareness” mean to you?

Autism Awareness was great...back when nobody knew what autism was outside of Rain Man or the image they had of the institutionalized individual. There's been enough "awareness" spread to touch just about every corner of the globe in the years since the movement first began. There is no reason "awareness" should even be a thing anymore. If you're not "aware" by now, you're just being willfully ignorant. 

Unfortunately, "awareness" doesn't help autistics find meaningful employment opportunities or give them an outlet to express their talents and strengths. "Awareness" doesn't stop caregivers who murder. "Awareness" doesn't help autistics make friends, find love (if that's what they want for themselves), or navigate the complex society (and all of its rules and constraints) we find ourselves living in. "Awareness" doesn't translate into understanding, nor does it stop people and organizations from wanting to eradicate it (and us) altogether. 

This is why we MUST move beyond mere "awareness" and forward into more bold endeavors. Acceptance is a start, but it shouldn't stop there. What we need are real changes in society that will allow autistics to be regarded as equal, human, and allow us to have a voice in the writing of our own history. A great start would be allowing autistics to drive the conversation about autism...because who else could possibly be an expert other than an autistic? Once people take the time to actually listen to what we have to say and take action based upon our collective voices, we will see true progress. That's the only way I can see us moving beyond "awareness" to something more tangible and helpful to our community. 

What is one thing about acceptance that would make a difference in the world? 

Acceptance is the key to equality. Until autistics are accepted as human beings equal to their non-autistic counterparts, there will be no progress, and we may as well just keep calling it "awareness." Acceptance without action is lip service, and for those of us in the trenches fighting for the right to BE, we need more than lip service. We need action. Our lives are just as important as any other. We should be allowed to exist as we were born to be, not how society, misguided parents, multimillion dollar juggernaut "nonprofits," or anyone else thinks we should be.

Conformity hurts, and comes at a great expense to those it is expected of. Acceptance is free, and can give another human being a chance at living in the light, rather than existing in the shadows. 

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