Tag: autistic self-advocacy

Celebrating the Bare Minimum: Why #Adulting is a Positive Thing

I read an article this week that basically scorned the whole #adulting tag as people wanting applause for doing what’s required of them as adults, and how they should get over themselves. Sure, I can understand how people might find it annoying, but I’d like to throw another light on it.

I’m an adult. I’m actually older than the article writer. I’ve been living out in the real world beyond my mother’s house since I was twenty-one. I rent a house. I have a car. I pay my bills. I’m also disabled. My partner of fifteen years is disabled, too.

My partner looks like an average woman in her early thirties. If people saw her out in public, they might question why we have a disabled placard for our car. If they saw her cane, they might immediately put it down to her being overweight. They can’t see the connective tissue disorder she has that makes her joints prone to dislocations, her balance problems, her low blood pressure that causes fainting spells or her chronic pain and fatigue.

My own disabilities are more subtle. Physically, I’m able. Unless I had a panic attack or meltdown in front of someone, or wore one of my neurodiversity pride t-shirts, they wouldn’t know that I’m living with autism, depression and severe anxiety. I pass well in casual interactions. I’m someone that people would assume had no reason to be unemployed, or to have failed to finish high school. But I’m on disability for very good reasons.

Living as we do, at home just about every day in a small village in a rural area, I imagine most people would expect our house to be perfect. After all, what else are we doing all day? I’ll tell you right now – it’s not. We have one big day a week when we go to town for shopping, medical appointments, and so on. It wipes my partner out for two days afterwards. By the end of the day, I’m exhausted, too. Interacting with people in crowded, noisy environments burns through my reserves a lot faster than people with less sensitive neurology. What we do on our ‘big day’ wouldn’t seem like much to most people. It’d be a day of errands that barely scratched the surface of their ability to cope. But when you’re starting with a finite amount of spoons, it takes its toll.

Once a month, we tend to do three things in our little village one after the other – visit the post office to collect our mail, take our bins to the local tip, and pay our rent. To do all three takes under an hour, but just about every time afterwards I say, “Well, yay for us for being fucking adults.” Why? Because it’s an achievement. Because even though I probably still have dishes in my sink and laundry in the hamper, we’ve got three things done that are vital to our survival.

I got told recently that I needed to lose some weight for my health. For several reasons, exercising at home is not an option, so my only choice was to leave the house. Given that I was essentially couch-bound by severe anxiety earlier this year, getting up and out has been a major challenge for me. Have I been doing it? Yes. How much weight have I lost? That’s not the point at all. This isn’t an inspiration porn story about a disabled person ‘overcoming’ their condition and riding a wave of success to able-parity. The thing that I celebrate is every time I put on my shoes and walk out the door despite the agoraphobia and anxiety waiting like wolves to bite me. I’m not overcoming anything. I’m gauging my level and weighing the cost versus benefit of doing something. And the days I don’t walk out that door? That’s fine. I’ve learned to accept that every day is different, and that some days I’m more capable than others of doing things.

For those who might think, oh, well the article writer didn’t mean people like you, she meant normal people, let me stop you right there. A big portion of the population has a disability. Sometimes it’s obvious, but a lot of the time, it really isn’t, and if you aren’t disabled right now, there’s a good chance you will be by old age. The great thing about the #adulting hashtag is that it’s about celebrating the little victories. It’s about giving yourself a high five for doing something difficult or unpleasant that you need to do for some reason or another. In a world that glorifies high successes but belittles everyday ones, it’s a breath of fresh air. I don’t think anyone who uses #adulting does it without a little dash of self-mockery, but that doesn’t mean it deserves to be labelled as worthless, either.

So, the next time you see a tweet or a post from someone celebrating the bare minimum, remember – you don’t know what it’s really like for them. They could be dealing with chronic pain, mental health issues, stress, grief, debt, or a toxic home or work life. They could be straining under a heavy course load, or struggling to find their direction in life. They could be sad, or lonely, or bored, and using the #adulting tag could be their way of cheering themselves up. Without being in their shoes, you really can’t tell. Sometimes, success is nailing a job interview, beating your personal best time, passing an exam or finding a partner, and sometimes, it’s achieving pants. Celebrating the latter doesn’t devalue the former, it just makes the world slightly less full of self-hatred, and for those of us who struggle to achieve the little things, it’s really fucking important on the path to self-acceptance. So, scroll past or block the #adulting tag if it annoys you, but don’t shit on those of us who choose to use it. A lot of us are shat on enough already.

The Celebration of Autism

neurowonderful:

Thank you for the introduction. Hello friends, allies, and fellow a/Autistic people. The tone of my piece will be a little different today, but I’d like to start by sharing a piece of my story.

In my earliest memory, I am standing in a sunbeam. I move my hands so that the light scatters, becoming a golden glow, and watch the dust particles float like little cosmos and galaxies. I am three years old when a daycare employee grabs my fluttering fingers and squeezes so tight that tears make the world go dark.  

I am four years old, and I hide under the table when the clatter and chatter of Christmas dinner becomes too much and grinds against my skull. A relative grabs me with their grown up hands and shakes me, and they hiss at me to sit in my seat and not move, that my bad behaviour is ruining everything. I have to bite my tongue to keep from moving.

I am five years old. I deliver all the lines along with my favourite film characters and sing at the top of my lungs, entire Disney scores by heart. I sing for my peers, but teacher says no singing outside of music class, so I recite my favourite scenes for them instead. No, teacher says, Use your own words. People don’t like to hear about movies, they can just watch them on their own. Are you dumb? Just use your own words.

I am six years old. I love to read. I read everything I can get my hands on, devouring books many grade levels above mine, but I have no friends. My teachers don’t understand me. My behaviour is attributed to laziness, poor discipline, bad parenting. It doesn’t occur to them to ask why I strike out, why I steal the other kids’ lunches, why I bite and cry and hide under tables. They just take away the book and pull me across the floor and force my small body into the carpet.

I am seven years old. I have one friend. Her name is Julie. She sits beside me and watches the teacher lean over me to still my happy flapping. Later, as we laugh together, she reaches over and stills my hands. My heart breaks. Just be happy like the other kids, she says. After our first sleepover, she tells me that I am too weird and my family is too weird, and that her mother said that I am not allowed to sleep over until I get better.

I am eight years old. I sit alone every lunch break and read books. Sometimes my classmates ask me if I want to play, but run further away every time I approach. I stop looking up when they laugh and call my name. The lunch monitor tells me that it’s the quiet kids who have violent thoughts, and that only disturbed people want to be alone. She makes an older student sit next to me. He punches me in the stomach when the lunch monitor turns her back. Anger replaces sadness, but it is myself I hurt in my anger.

I am nine years old when I realize that people don’t like me. A teacher tells me that I don’t know how to talk to people, but no one will tell me how to do it right. I offer up facts about animals, drawings of my favourite scenes from movies, long educational monologues on Ancient Egypt. One day an adult snaps, turning on me with sharp words. Shut up, they say, just shut up. No one cares. You are so annoying. I begin cutting myself off mid-sentence and apologizing for my passion. I feel the fight start to drain out of me.

I am ten years old when I realize what people think of me. My peers call me special, “in the bad way”. Short bus. Speddy. I am ten years old when a teacher asks me if my mother dropped me on my head, that any child could do this easily. I am ten years old when a trusted adult tells me that the way I move when I am excited makes me look like the R word, that real people don’t move like that.

I am ten years old when I try to end my life.

The only words I had had for myself were broken, stupid, freak. The R word. No one was there to tell me that there is nothing shameful about being different, that I am not less. That disability is not shameful. That there is nothing wrong with learning differently or being in special education. If I had had words like executive dysfunction, like meltdown, like sensory overload, like Autistic, I believe that I never would have tried to hurt myself.

It would be another long, dark ten years before I discovered the a/Autistic community. When I finally learned this truth about myself- that I am not a broken neurotypical person, that I am a whole, if bruised, Autistic person, my world was more than changed. It was a whole new world, and it was populated by people like me. Now I am closing in on twenty-five years, and I’m still working on accepting my disabled, chronically ill, Autistic self.

Now I wade back into the hate and the ignorance to spread understanding, trying to advocate for the children who still have a chance and lead a/Autistic adults home. Advocacy is my life, and the message I try to spread is one of acceptance, inclusion, and neurodiversity. This is more difficult than it may sound, because in many ways, I am still that child. I am in the same situation as many autistic adults- I am unlearning self hate and relearning how to be my true self.

When it comes to celebrating Autism, there are those who stand nearby, protesting, holding conditions and waving caveats. Autism acceptance is alright- for some. Sure, we can celebrate Autism- or a few specific, socially-acceptable ways that Autism can present in certain people, in certain situations. Sure, we can celebrate a/Autistic people’s strengths- in as far as those strengths are potentially profitable to capitalism. Sure, love and inclusion may work for those “quirky”, “high functioning” people, but real disability is too tragic, too messy and too uncomfortable, to ever be celebrated. Maybe tolerated. Never celebrated.

You have to watch out for tolerance.  It’s not love or understanding that most of us learn for people who are different, it’s tolerance. Not how to accept, but how to put-up-with. There is no love in tolerance. Tolerance is inequality. Tolerance says, “Who you are is wrong and different, but I, as the right majority, will conditionally allow your unpleasant existence to go on”. Acceptance says “Who you are is a valuable, precious human being who deserves the same respect, rights, and opportunities as anyone else”.

For many, the concept of Autism acceptance is a stretch out of their bubble of privilege that they are not willing to make. The thought of accepting a/Autistic people exactly where we are, as we are, disabled and human, challenges and joys alike, is too much. They are too deeply entrenched in the culture of cure and its panic-perpetuating tragedy rhetoric. To these people, to these people who try in vain to separate the person from the neurotype, to cut out the autism, to mould a non-autistic child from an autistic one- the idea of accepting a/Autistic people as we are is outlandish. To these people then, to celebrate a/Autistic people, and even Autism as a neurotype, is disturbing.

The Mexican poet, educator, and humans rights activist Cesar A. Cruz said that art should comfort the disturbed and disturb the comfortable. Well, the a/Autistic community is uncomfortable, and more than that, we’re in pain, and the comfortable have all the power in the world.

Our resistance is small but mighty, made up of thousands of little lights, each flame carried by an a/Autistic person and protected by our allies. It’s for that reason that I choose to be art, and why, when I was asked to speak on “the Celebration of Autism”, I jumped at the chance to comfort and to disturb. It was only after I accepted the honour of speaking here today that I realized I wasn’t sure how to talk about celebrating autism. I had to decide first what celebration means. I had to think about what it meant to go beyond accepting and to reach celebration.

The celebration of Autism is something so powerful and so subversive, it makes people uncomfortable. It forces people to reconsider what they think they know, to question what the experts are saying, to look to the voices that should be elevated above all others- the voices of actual a/Autistic people.

The celebration of Autism transcends the shadows of ableism and the silence of tolerance. Celebration pulls first-person autistic experience and joy into the limelight. The celebration of Autism is the most powerful tool we have to hold back the dark of indignity, and to spread our message. In a world dark with pity, fear, and hatred for people with disabilities, celebration gets people’s attention. Celebration is radical.

To be able to celebrate parts of your identity and life experience, even if your identity is a marginalized one, even if your life experiences have been fraught with challenge and societal oppression, is not a right afforded to disabled people. We are the largest minority amongst humans, a minority group to which a person of any race, religion, nationality, gender or sexual orientation may belong, and the only minority group that any person can become a part of at any time.

To many of us, our disabilities are vital and intrinsic parts of ourselves, of our identities, the importance and meaningfulness of which cannot be denied. For many of us, disability is as an important aspect of our self as our race, religion, nationality, gender, or sexual orientation. But for too many people, disability is the last holdout of shame, of intolerance, of outright hate. Some of those people are disabled themselves and have internalized a lifetime of ableism.

Once I decided what constituted celebration of autism and how to define it and its benefits, I had doubts that I am qualified to talk on the subject. I’ve talked the talk, but have I walked it? Being autistic is to be different, and disabled. There are hard parts about being autistic. Being autistic in a world built for the non-autistic majority is tough, and it can be tough on us, and it can wear down on our self esteem. It can make it hard to see our lovely parts. I wondered in what ways I celebrate autism. I started looking at my life and thinking about the other a/Autistic people I know whose lives touch mine.

My work on my blog and through my Youtube channel puts me in contact with thousands of strangers. Youtube comments, questions to my blog, facebook comments, e-mails, messages. I would say that about half of these messages are from parents. I would say that the other half are from a/Autistic youths and adults who have found my videos and, for the first time, have words for what they have lived and the knowledge that they are not alone.

There are so, so many a/Autistic adults out there who went misunderstood and misdiagnosed, or undiagnosed. Our understanding of Autism Spectrum Disorders has increased greatly, and now we know more about how Autism presents, particularly in under-diagnosed groups like autistics of colour, autistic women, and autistic people with co-morbid neurological conditions or mental illnesses. But even ten years ago, doctors and professionals didn’t know what we know now, and so generations of a/Autistic children were missed, misdiagnosed, slipping between the cracks to grow into struggling a/Autistic adults.

When these a/Autistic teens and adults reach out to me, every single one of them talk about how incredibly difficult it was to grow up undiagnosed autistic in a non-autistic world. All of them have experienced peer abuse; most have experienced parental abuse, whether intentional or not; most report traumatic school experiences, including public shaming, isolation, restraint, and psychological abuse; many have been taken advantage of by people thought to be friends or abused by a romantic partner; many report experiencing child sexual abuse, and autistic women are many times more likely to be sexually assaulted than non-autistic women.

All of them talk of the deep pain of growing up without insight or explanation into their neurotype or impairments, the only available conclusion to a disabled child being, “I am bad. I am broken. There is something wrong with me and it’s my fault.”

But when they do find us again- when they learn the name we have for the ways their brain works and when they find the a/Autistic community- the wrong explanations used to fill the gaps aren’t necessary any more. You’re not lazy, you have executive dysfunction.

Yes, you are “too sensitive”, but it is a real and valid neurological condition called sensory processing disorder, and it’s okay to make yourself comfortable. You’re not stupid or a selective listener, you have central auditory processing disorder and you learn differently.

You’re not an embarrassment or childish for moving your body in ways that feel good and keep you healthy, but look different than how other people move. There are others who move like you, who rock and flap and spin, who collect information and who echo words and who love passionately and all consumingly. That you are not alone is life saving information. Learning that you are not alone is worth celebrating. Surviving is worth celebrating. And welcoming people back is a community celebration.

When I am openly and unapologetically Autistic, when I live my life in the way that is most healthy and happy for me, I believe that is celebrating. Choosing to share my experiences with you as a way to spread awareness and understanding, and when I get to talk about what I like about being Autistic or about how a/Autistic people are important and worthy of love, that is a form of celebration. Probably the most radical thing I have ever done is make a list of things that I like about being Autistic.

I like how deeply I feel- when I love I give my whole self.

I like how I notice the details that others miss.

I like how I see patterns and make connections.

I like how I see music, bright and rhythmic, flowing shapes and colour.

I like how every good feeling is more, and so much, my body can’t contain it.

I like how I get to feel what it’s like to sing with your body and dance with your hands.

I like when the world shrinks down to my special interest, and for a time, I can make sense of everything, and everything is good.

Another thing worth celebrating, and the thing that I feel most excited to talk about, is a/Autistic culture. It surprises people, but a/Autistic culture exists. a/Autistic community exists. That second one may seem like an oxymoron to people who are still lagging behind and thinking of Autism as strictly a social impairment, as if a/Autistic people are just like non-autistics, or we could be, were we not missing the “social” and “empathy” pieces of humanity.

We design and wear t shirts that say things like “I love someone who is Autistic (it’s me)” and “Neurodiversity is natural”. We craft jewelry for Autistic pride, collect buttons, trade zines. We share stim toy recommendations and post reviews of chewable jewelry.

We make gifs of ourselves stimming, videos about our special interests, and photos of ourselves wearing the faces God gave us, and we share them. We write poems, record podcasts, draw comics, sew weighted blankets and make stimming jars.

We start organizations, like the Autistic Self Advocacy Network, and we have meet-ups and conferences, and we get together to protest and to advocate.

And when I think of what it means to celebrate autism, this is what makes my heart glow with pride and happiness. All of us, the a/Autistic community. Those of us who live loudly and those of us who lead quiet lives.

Those who still struggle with shame, and those who are spreading messages of self-care and acceptance. Those of us who always knew we were autistic and struggled that way, and those of us who didn’t know until later and have our own sets of challenges. Loving and accommodating ourselves and others. Being honest about our limitations and working around them. Finding others with whom to share stories, experiences, interests, and who can really understand. Owning our stories, our selves.

It’s not a perfect community- we are hurting, and the world is still hostile, and many of us are still entrenched in cure culture and hate, or can’t yet escape. But it exists. And that is worth celebrating.

Every autistic that finds themselves again as a teen or adult is important and should be protected. I love to celebrate with them and welcome them back. There will always be room for those of us still meeting ourselves, our wings wet and still weak, just trying out our first flaps.

But imagine this: Imagine if we were to raise a generation of autistic children who don’t have to re-learn how to just exist a/Autistic, who don’t have to cut through scar tissue to let out the pain, to clean out the old wounds underneath, to let them heal.

Imagine if we could raise a generation of a/Autistic children who never had to hide who they are, force themselves into something they are not, only to burn out when the dam breaks and the strain of the act is finally too much. Who never have to hear the words epidemic, crisis, tragedy, burden, or mercy killing applied to them again.

Whose humanity, whose personhood and competence is never compromised or in doubt, whose dignity and rights are respected. A generation of children who love and accept themselves, and who can celebrate all of the parts of themselves worth celebrating.

To my fellow a/Autistic people, today I encourage you to think of one thing about your autistic self that you can embrace, and work towards celebrating that.

To the loved ones of a/Autistic people, I encourage you to look at the a/Autistic person you love and see with eyes that can see the value, the potential, the joy. And no matter who you are, I hope that, today and every day, you will join in celebrating a/Autistic people, our culture, our experiences, and in making a better and safer world for autistic children and adults and our families.

Thank you.

Society demands that we keep overcoming, overcoming, overcoming. But we don’t have to. Nowhere is it written that to be a really real human you have to brute force your way through your limits. Nowhere is it written that not doing so makes you less worthy. For most people, constantly refusing to acknowledge that you have limits is seen as a problem. We all have limits & we are supposed to acknowledge them, know where they are, work within them.

Kassiane S., ‘Overcoming’ Is Not a Moral Obligation (via theaubisticzionistconspiracy)

When disabled people, Autistic and non-autistic, say that they use identity-first language to refer to themselves, a common retort is “I don’t understand why you would define yourself by your disability.” To me, this doesn’t make sense. I call myself disabled because I don’t think my disability needs to be held at arm’s length, not because I believe that I’m autism on legs.

(As with my other traits, I refer to my disability with an adjective-noun construction which is common to the English language. I would also describe myself as a long-haired woman. So far no one has come forward to demand that I instead refer to myself as “an individual with long hair,” or accused me of “defining myself by my hair length.”)

I’m starting to think that when people say “defining yourself by your disability” they really mean “talking about yourself in a way that reflects the belief that your disability is not detachable.”

Illusion of Competence (via glitterencrustedbunghole)

Kelly Sue DeConnick Explores Gender Dynamics and Defiance on Bitch Planet

kellysue:

Paste: The way that the word “compliant” is used, and takes on these incredible sinister connotations throughout the first issue…when did you arrive on that?

DeConnick: Everyone who works in the medical field hates me for that choice, by the way. Apparently, non-compliant patients are nothing you want to cheer for. I don’t remember making that decision. This is a thing I see with my daughter. My daughter is a very spirited 4-year-old girl. And with my daughter more than with my son — when my son is, let’s say spirited, it tends to be, “Boys do that; that’s boys.” And it’s chuckled at, if not encouraged. And when my daughter has initiative or is disagreeable or has a different idea about how she wants to do things, she’s a pain in the ass. She’s a troublemaker. She needs to smile and act nice and not disrupt the system. And I want so badly to protect this[, this] thing about my daughter that I most treasure right now: Tallulah does not give a fuck if you like her. I am so proud of her for that. And I know that there are parents that that will horrify. Please understand that we have a saying in our home, that you don’t have to be nice, but you must be kind. And what we’re trying to emphasize is you don’t have to be compliant; you don’t have to just go along with the way of things.

Full interview in LINK. 

I haven’t read Bitch Planet or Pretty Deadly yet, but I have to say I approve of the word usage of ‘complaint’ here. Many people, many of them disabled, many of them female or queer or people of colour, have the label ‘non-compliant’ attached to their files simply because they have opinions about their own medical or psychiatric care that do not mesh with those of their primary physician. This isn’t a benign thing – people’s accounts of their symptoms are dismissed, they are forced into courses of treatment or medications that are unsuitable for them, forced into institutions or even die through improper medical or psychiatric care, all because a physician decided their patient was too uppity and didn’t have a right to independently research their condition or make informed choices about what treatment was right for them. Given that disabled people, women, queer people and POC are more likely to be subjected to these forms of social control by medical practitioners, government agencies and law enforcement, the use of the word compliant rings true to many people who have been subject to the whims of these agencies in the course of their lifetime. Just my two cents, from a disabled autistic queer girl, for whom the world has been difficult, but not as horrific as it has been for some of my fellows.

no more – a letter to suzanne wright

mim-lilly:

My girl cracking herself up with scripts last night I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, w…

My favorite part:

“You grabbed an autistic child’s face to make her look at you.

.
And then something miraculous happened. My girl spoke for herself. “I HATE BEING TOUCHED!” she yelled. God, I was so proud of her. So instead of leading, I followed. I loudly praised her for telling you – with words – not to touch her. I repeated her words to make sure you’d heard them, loudly and clearly, “I’m so proud of you,” I said, “for telling Mrs. Wright that you DON’T LIKE TO BE TOUCHED.”
.
It was in the car on the way back home from your house that Katie would explain to her sister that she really does like to be touched, but not without permission by people she doesn’t know. And it was then that she would turn to me, fuming and indignant and say, “Doesn’t that lady run the biggest Autism charity in the world? I don’t get it. Does she even know anything at all about autism?”   

no more – a letter to suzanne wright

neurowonderful:

Wouldn’t it be awesome if there was a pro-Neurodiversity, pro-Autism documentary starring actual autistic advocates?

Wouldn’t it be amazing if this educational film exposed the controversy of Autism Speaks, while at the same time covering topics like the Judge Rotenberg Center and the horrifying society-sanctioned pattern of disabled people being murdered by their caregivers?

Wouldn’t the icing on the cake be an exploration of the Autism Acceptance/Neurodiversity movement through the eyes of autistic people, featuring interviews with Ari Ne’eman of The Autistic Self Advocacy Network, Landon Bryce of thAutcast, artist/author Robyn Steward and autism activist Zoe Gross?

This film exists! The documentary is Citizen Autistic, Produced by William Davenport, and it needs help. William Davenport is currently trying to raise enough money to be able to do a screening tour and bring this incredibly important film to people all over the US. They have an indiegogo campaign here, and their goal is to raise $5000.

This is a big opportunity for the a/Autistic community to spread a message of truth. As William Davenport said, “After screening the film, people have remarked to me, ‘I didn’t even know that adults have autism’.” Right now the loudest voices are the voices coming from Autism Speaks and other pro-cure and anti-acceptance organizations led and directed by non-autistics. But films like Citizen Autistic can be a part of changing that!

Please check out their indiegogo campaign here and consider donating, and please help spread the word! Citizen Autistic also has a facebook page here. To see more excerpts from the film you can see William Davenport’s vimeo page here.

Even though my funds are very limited, I just donated $25 to this because the $25 perk is a DVD copy, and as an Australian, it’s likely that this is my only legit way of getting to see this film. So if you’re an international autist who wants to see Citizen Autistic and can afford it, donating is a great way of not only helping out, but allows you to experience the film, too.

(Source: http://neurowonderful.tumblr.com/)