Saving Oneself

This is sort of a response post on a couple blog posts that I read recently.

Being disillusioned is rather painful. Nothing quite like having the wool over your eyes and rug pulled out from under you. For me that is what happened as an activist. I found out one day, I wasn’t as amazing I as I thought I was and out of frustration and disappointment, I lost myself in burn out and apathy. I guess this is a word of warning to my brothers and sisters who are disability activists. Fighting the fight for rights and inclusion, for equal status and for remaining human; it’s pretty much an uphill battle, and one that doesn’t seem to have a real outcome. So it’s why I felt like writing this, because I need to make something clear.

I am not a hero for being an activist. I didn’t go into this for heroics.

But I guess I need to explain why I went into activism and why burn out and being jaded can be so easy.

I guess what started as a venture in community turned out to be a romp through social-ethics and identity politics. I didn’t plan to be an activist, to write blog posts, to go to senators, to talk at summits to march at protests. It wasn’t in my purview. Yet I manage to do all those things and I loved it, because I had the image in my mind that I was boldly doing great things, for everyone, that I was changing the world. That I was…being a hero.  That my friend was the first step on the road of a cliff into the hell of burn-out.

First, I didn’t pace myself. I threw on more projects, I tacked on more lectures I talked to everyone educated everyone with no chance for myself to breath. I got tired easy, but I kept soldiering on. Because I told myself I was making a difference. I never knew I was burning the wick at both ends that I was getting more and more exhausted and overwhelmed and that protesting publicly was traumatic. I just kept working, kept trucking along with my normal job and drowned myself in policy and social-commentary. I kept thinking that progress was happening that I was doing a good thing.

But I wasn’t watching where I was going, and I burst into flames. Jaded cynicism and apathy seem to ooze out of wreckage that was me a year ago. I wrote about it on my blog, I commented on it and I left activism I was done with the verbal abuse from parents. I was done with the public backlash; I was done with ASAN abandoning my pale pagan ass out to dry. I just had it. So when the smoke cleared I was left with a pretty real result.

I wasn’t saving anyone, I wasn’t anyone’s hero. I was a train wreck that everyone watched burn.

You don’t go into activism to be a hero, you may change and impact people, you might start a chain of events that will eventually change a law or a social belief. But it never happens quickly and there is more dead-ends and road blocks than breakthroughs. You will find out that people that you loved and were loyal to you, will stab you in the back. You will find out that people you respected turn out to be monsters. You will go up hill and fall down like Sisyphus. Everything will become a pain, a chore and startling example of human hivemind and group think. You will start to hate it. Activism is often thankless and void of gratitude. But an activist knows this, and still presses on. It with this wisdom that I realized I am only a hero for myself. That I need to take care of my needs before everyone elses.  I have to see where I am in the scope of things, where I am going and if my goals match what I am trying to do with my life personally. I got to step back, and take care of myself before I burn again.

Now at round too, with disability activism, I am better prepared, I am not a hero for trying to get back on the saddle. Just a human being who wants more, who seeks the better of people, I don’t want to save anyone anymore. Just myself.  

Generation Fade

Generation Fade

I suppose as I sit and write this there is a moment where I wonder if this is going to be heard at all. Or largely ignored, maybe it doesn’t matter in the scheme of things, but to me I think it’s important that we read this and understand something. Critiquing something doesn’t mean you hate it. In fact it sometimes can be an act of love. This is not a protest or an ultimatum. This is my observations and what I think might be best for the Central Ohio/OSU chapter of ASAN.

It occurs to me now, why I feel so ignored by a bunch of privileged academics in offices making choices for the National branch. It is the same feeling I get when I am ignored by a population or excluded. It’s the feeling of alienation and for an organization that has been alienated and ignored by the greater typical population, it feels ironic.  This alienation comes from not following the party line. Not actively protesting against AutSpks, or having a taupe or grey ribbon. Makes you somehow invisible, if you don’t dump your resources into traumatic emotionally exhausting protests in which we feel like we have been eviscerated in front thousands of parents. This is what has being going on with ASAN Columbus and myself. We’re being divorced by National.

Our Lead said it last night “We’re already considered a rogue chapter” during the meeting we had last night. It’s pretty much true, we’re not following the party line and we have bigger and more pressing fish to catch. Like employment, and education and health resources. We have to worry about the next generation and what they are going to inherit when we become ash and bone. Do they want a protest group against AutSpks or an organization that will help them keep their heads above water? Most of us are drowning. Autistics are going hungry, they are getting abused by caregivers, locked in institutions, imprisoned, sexually assaulted, abandoned and they only thing we are doing to help our brothers and sisters, is protesting against a bigger organization with deeper pockets and more resources. We’re fighting against a kraken with a rowboat and no one seems to question it. 

I will say though before anyone judges me, that I am against AutSpks, I think it’s horrible, but I know better. You need to reach people one at a time; you need to educate, friends, family and coworkers. You can’t assume that your pamphlets and flyers are enough; you need to sit down with them and one at a time make them see the damage. We’re already seen by the majority as that ‘militant autism group’, we shouldn’t have that reputation. But we do. It’s that reputation is why I never came out as an activist to my coworkers until recently. I don’t want to make enemies. I still don’t, but I guess this will make few now. Might as well put on my pirate hat and charge forward. 

Now I have been personally slighted. I have worked with National to make tools for the majority of autistics out there. I enjoyed it and I was looking forward to the next project. So imagine my surprise when the next tool came out (which I saw on tumblr) and it was about a topic I had a lot of interested in. So I was hurt and in pain and angry about being excluded more so because the one in charge was Mel Yergue. So Brutus shoves the dagger a bit deeper. When I asked for an explanation on why on Facebook, I get no response, I call Em Titon and we have a heart to heart. Then she drops a bomb, ASAN did see my call-out. But they though it was a suicide message, she told me that they were going to have folks call or message me to make sure I was alright. She was the only that reached out to me. No one else did. I guess they were too busy protesting to care. It’s really sad and really angering at the same time. Because even if I did overdose on tequila and Percocet they probably wouldn’t have noticed my bloated rotting ass in the bathtub until some someone mentions it on Tumblr or Facebook. If I am lucky, you guys suck at ‘suicide watch’ bytheway. 

I don’t regret anything that I am writing; I don’t regret getting a target on my ass. I don’t care, because I don’t think anyone will notice or respond to me.  They haven’t so far so why would they start now. But I will say this to all the baby activists out there, just know what you want from your work; know what you hope to achieve. Don’t join a group thinking that they will always support you. Because when you don’t follow their modus operands they will throw you away. I am nothing to this group, I have been for five years, I don’t know what they want from me or what I can do, but at this point I am getting on my Viking longshot and braving new lands without the Jarl’s support.

One more thing, I am not ‘quitting’ ASAN, but at this rate it will be soon when I am done affiliating with them.

Playing the Fool

The Fool Card

At #0 (or, in some decks, #22, the last card as much as the first of the Majors) the Fool is the card of infinite possibilities. The bag on the staff indicates that he has all he needs to do or be anything he wants, he has only to stop and unpack. He is on his way to a brand new beginning.

But the card carries a little bark of warning as well. While it's wonderful to be enthralled with all around you, excited by all life has to offer, you still need to watch your step, lest you fall and end up looking the fool.




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The day after Autistic Speaking Day has left me with a sense of apathy lately. While I have been rather jaded and burnt out with the past events of doing disability activism for ASAN. I personally stopped caring about what lives I will changed or have changed or have left in doubt. You might gasp at this and find it tragic but trust me. This is me drawing the Fool Card.

I use do Tarot readings for shits and giggles. Later I got more interested in Rune casting and I actually excelled in Runes than Tarot. Still, the point of the metaphor is not about how I like to do divination for fun, but why I didn't look before I leap.

I was over doing it. I was throwing myself into my work and thus expended my emotional resources which left me a bitter, jaded and hateful person. I don't like the saccharine kids that want to be Aut-activists, my patients for parents is gone and any superheroish feelings of wanting to save the world, have all been ashed by the harsh reality that the thankless job of being an advocate doesn't bring recognition or the feeling of accomplishment that I desired. I was unhappy with myself, with what I was doing and yet I was still meeting with young women who wants answers. Writing letters to parents, going to talk to other DD self-advocates and even speaking to Melanie's class. Even today at work, I was explaining the wrongs of Aut$pks to a naive volunteer. I keep throwing my ass on the fire for some reason. Highly aware that I am being burnt.

Ladies and Gents, I like you to meet the Fool Card of the Autistic Major Arcana.

I still keep hoping that something will change. That Autistics Speaking day will actually improve relations with parents and teachers instead of becoming somesort of glorified meme. That Aut$pks will change hands with someone else that has been touched by neurodiversity and thus, will have better PR. I hope that one day ASAN will become a leading disability organization, that I will be staff one day with a paycheck. That parents will be reconmended to seek out ASAN chapters to involve their teenangers with.

It's a pipedream I am sure. I am so cynical and dry that I know I am fighting a loosing battle. Yet despite being so fucking jaded I manage to saunter merrily down the path and into a gaping chasm. Maybe the caveat isn't really the cliff in front of me, but the fact I was so blind to it and I keep climbing up and falling back into it.

Let me make this clear.
Don't self-advocate thinking that you will change the world. Self-advocate because you rather fall into the schism yourself than having someone chuck you into it.