Lines – Amber (Part 1)

Continuation of the series:

Lines – Glass

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As a person with developmental disabilities, I get a lot of autism stereotypes and a lot of intellectual disability stereotypes thrown my way. That means some people expect me to be a heartless mind and other people expect me to be a mindless heart.

And they actually believe those expectations to be honoring my strengths.

But that’s not necessarily how it works. There are autistic people with huge strengths or interests in social areas. There are people with intellectual disabilities whose main strengths or interests are intellectual. We don’t have to have a stereotypical set of strengths. […]

And people will either doubt your disability or doubt whether you really have the strengths and interests you do.

They’re always trying to prove that autistic people’s empathy isn’t real, that the intellectual achievements of people with intellectual disabilities isn’t real, that autistic people can’t be compassionate and people with intellectual disabilities can’t be geeky or nerdy or have cognitive talents.

And they’re always trying to say that different disabled people are allowed to have certain things and not others.

Each type of disabled person is supposed to be missing one thing and have something else: Body, mind, heart, whatever.

So we have bodiless minds, mindless bodies, heartless minds, mindless hearts, and whatnot, and that’s supposed to be a good way of looking at us!

The truth is that however you divide it up, every person really has a mind, a heart, a body, a soul, whatever you want to call these things. I don’t personally divide people up that way, but if you’re gonna, those things are universal. Disability doesn’t mean one of them is missing.

Mel Baggs

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The idea of some shared humanity is just that: an idea. One that is too often used to exclude and dehumanize people. But I do think that it can be a useful idea if it’s deployed just so. When it comes down to it, we are all just animals fumbling around on a rock. That is what it means to be human. We do not always make each other feel at home here on Earth, but none of us is truly an outsider, either. We all belong here. None of us are strange visitors who can only hope to be tolerated and accommodated.

Caroline Narby

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Abnormal is often shorthand for extreme. Ah! they say, you simply fail to understand the spectrum! Yes we all experience a little of this and of that, but until you’ve seen mania full blown, an acute psychotic episode, someone so debilitated by anxiety they cannot leave their house, you simply can’t appreciate what real mental illness looks like. This definition seems to work until you look at other examples of ‘extreme behaviours’, at social activists who put their lives at risk for a cause they are passionate about, at kids moving across the country to have a chance to train in the artform they eat and breathe, all the hope and joy and optimism of a couple in love and about to get married. Extreme can be dangerous, can be horrifying and destructive. But it’s also the place of hope for so many, their centre, their joy.

Sarah K Reece

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I don’t know who invented the idea of a carefree childhood, but such a myth has never been the case for the majority of children in the world.

I never felt cheated out of a childhood, despite experiencing some of the things that a lot of people seem to whine on and on about in that respect. […]

Just as some parents believe they’re entitled to a perfect child (where perfect is defined by some pretty biased standards of perfection, at that), some people believe they’re entitled to perfect (again, pretty biased standards of perfection) relatives in general.

I have to believe that this sense of what the stages of life are supposed to be like, and what people are supposed to be around for others to relate to, that somehow excludes the experiences of probably the vast majority of people on the planet, is relatively recent, and entirely mythical.

Mel Baggs

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‘Normal’ people still get sad.
‘Normal’ people still have self-esteem issues.
‘Normal’ people still wish they were someone else.

There’s this misconception among some people that ‘normal’ is this beautiful land of milk and honey and double rainbows, where nobody has any problems or is ever made to feel inadequate.

Chris Bonnello

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[We’re not only autism, but] an intricate amalgam of our innate character traits, our strengths and weaknesses, our personal histories, our thoughts and desires and fears and embodied experiences of the world.

[Like everyone else, autistics have] many of the common experiences and challenges of growing up that most adolescents and young adults experience. […]

People learn and grow and are affected by their histories as they age. People become competent at dealing with the circumstances of their own lives. […]

Just because we’re new to many non-autistic people’s conception of the world, doesn’t mean we’re actually new to the world.

chavisory

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[…]  I have this niggling suspicion, though, that there are an awful lot of people in the world who have been told that they don’t count, don’t get to be in the stories, things were never quite bad enough, or maybe they were too bad to be real. I have this feeling that there are an awful lot of us, and that if we just stopped keeping ourselves a secret, we might blow that lie out of the water.

Julia Bascom

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In recent years, I’ve noticed that we tend to divide the world up into ‘trauma survivors’ and everybody else. But I’m not sure this distinction is entirely real; I think what we’re actually dealing with is people who know they’ve been traumatized and people who have forgotten. Or maybe the division is between people who are visibly shaken by their trauma and those who look solid; after all, we live in a society that places an extraordinarily high value on appearances, where people get a lot of credit for acting as if everything is fine, and a lot of criticism (or pity) for letting their pain show. […]

Lundy Bancroft

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Isolation from support and reassurance is the essential part of the trauma. I was surprised when I first learned that people who are put thru traumatizing experience, if they immediately get support, comfort, reassurance and love, both during the trauma and afterwards, they mostly don’t develop post traumatic stress disorder, they’re able to process and incorporate it. Basically, a human’s ability to accept and survive trauma largely depends on how supported they are, on having a strong community and knowing things will once again, be okay. […]

Furious Goldfish

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Next

Lines – Glass (Part 3)

Previous

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Typically developing babies are reducing their attention to faces and increasing their attention to objects, [and] their social development […] soars. Moreover, rather than distracting babies from social engagement, objects and the hands that manipulate them offer new ways to share attention with others.

Emily Morson

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It is a lot of work to look non-autistic, and yet, looking non-autistic is the ticket to sit at many tables. It is not right, and yet, I choose to expend a great deal of energy inhibiting my autistic ways for the sake of sitting at some of society’s tables. Employment is one such table. […]

Many argue that all people have to do this ‘sucking it up’ to some extent. After all, we cannot just act however we wish when we are in public. I agree.

However, autistics have to do this to such a greater extent that it prohibits many of us from being employed because we simply cannot ‘suck it up’ long enough each day to be gainfully employed.

Judy Endow

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It’s Stressful to be Someone You’re Not

Faking it ‘til you make it may work in the short-term, but trying to sustain it in the long-term is unbelievably stressful. We all have our preferred ways of doing things. And because those ways are normal for us, they require the least amount of energy. We can do them without burning out or disappearing from ourselves in the process.

Faking it is supposed to magically smooth away our feelings of self-doubt and low confidence, but in reality it puts extra stress on the body. People who continuously act a pretense, outside their natural personality preferences, at some point will start to feel anxious, exhausted, angry and plain-old frustrated. It’s a bit like pulling the plug in a bathtub; you won’t notice much difference in the water level at first, but eventually everything will just drain out.  

Jayne Thompson

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We are all, every day, engaged in mind-blindness against people we do not agree with or comprehend. We are all unempathic about some people and some groups, […] toward people who are not like us.

Karla McLaren

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How many ‘normal’ people have enough human feeling to befriend and understand non-normative people? How many ‘normal’ people are trapped in their own ‘normal’ worlds, without any consciousness of what it means to be non-normative? The accusations of lack of caring and lack of engagement adhere to the ones who are different. Those in the majority are simply acting ‘normally’ by doing all the things that, when non-normative people do them, are considered evidence of pathology.

Rachel Cohen-Rottenberg

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What’s it like to be neurotypical? […]

It’s being able to fidget without it being called some specialized term which sounds like a euphemism for fidgeting with one’s own unmentionables, have a passionate interest without it being called a ‘perseveration,’ participate in classes and activities without them being called ‘therapies,’ and appreciate the small beautiful things in life without being accused of being unable to see the big picture. […]

It’s living in your own little world just as much as any autistic does, without people making a big deal out of it.

reform_normal

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Some people get labeled because of their disability.

For example:

• Sheila does not have a disability. Sheila has a bad day. She yells at her sister. People say, “Sheila was being mean today.”
• Renee has a disability. Renee has a bad day. She yells at her sister. People say, “Renee is aggressive.”

Autistic Self Advocacy Network

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Both satire and very serious

Managing Challenging Behaviors in Neurotypicals

Many neurotypical adults have behaviors that the rest of us find difficult to handle. These people are generally unaware of the stress their challenging behaviors cause for autistic friends and family members. Even the most patient autistic people whose loved ones have challenging behaviors may become frustrated and find their time and energy greatly taxed by the demands of dealing with these behaviors regularly. […]

Restless Hands

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How do we respond to discomfort? To fear?

Let’s look first to film and literary clichés for examples…

We grit our teeth and bear it. We ball our fists and dig our nails into our palms. We bite our tongues to keep from screaming. We pinch ourselves. […]

What do all these methods have in common? They all involve the distraction of pain as a coping mechanism. […]

There’s a reason pain is the universal distractor. Pain is the only form of stimulation that our nervous systems will not acclimate to.

Kirsten Lindsmith

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Sometimes, all of us have meltdowns. Not slight upsets, or moments of rage. Full blown, life sucks meltdowns. If you don’t carry an autism label and you don’t harm yourself or others while having them, they remain private moments of vented frustration one may or may not be ashamed of.

Kerima Çevik

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We must accept that it is a normal behavioural response to having our needs unacknowledged and unmet to lash out aggressively, to engage in attention seeking, and to do things others find annoying. Any of us would do that (and do) if put under enough pressure and if we feel unvalued and unheard.

Michelle Swan

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[…] The most dangerous assumption, meanwhile, is that they don’t understand. Their eyes are not windows to any sort of soul. They are people in form but not in substance. Their communications are disregarded as meaningless or rudimentary. Imagine if, all along, a person treated this way understood absolutely everything they were told, understood that people underestimated not only their cognitive abilities but their very humanity, understood that they were seen as less than, damaged, or not even there. Imagine the danger to a soul viewed as soulless.

Imagine how you would feel in that person’s place. Would you feel angry? Would you want to scream? Would you lash out sometimes? Can you imagine something like an inner struggle to express rage without hurting other people that might lead you to self-harm?

The desire to be seen is perhaps the strongest craving in a human being. […] I don’t mean seen literally with the eyes, or heard with the ears, but to be beheld by a fellow human by any means available. To know that you have managed to convey something of your unique self to another person both roots you to the world and frees you.

Erin Human

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Followed by the series:

Lines – Amber

Cure

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Main argument: Severely disabled

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I don’t hate myself, I just wish there was a cure so I could function better […]

Jonathan Mitchell

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[Some people] would not want a full cure but would take half of one, perhaps lowering the impact of certain symptoms while maintaining the core traits.

Creigh, Caley

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“But if you took away my autism, I wouldn’t be me!” neurodiversity proponents cheer.

“Yes, you would, and no, you wouldn’t. And that’s all okay,” I counter. Every human on this planet […] ha[s] no inherent, independent, unchangeable, enduring selfhood as such.

Twilah Hiari

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[E]very time I see a post about anti-cure or use of “autistic” and the r-slur as insults, there are inevitably a few autistic people commenting that they would actually want a cure, or that they’re okay with people using “autistic” as an insult.

In a vacuum, these sentiments are fine. You’re entitled to your own opinion, and if you are autistic both these matters are of direct concern to you […]

But we’re not in a vacuum.

We are surrounded by ableists. […] if you present an opinion that aligns with their beliefs and goes directly against the held beliefs of the majority, they’re going to tokenize you. Because one autistic voice that agrees with them is enough to undermine the voices of literally everyone else. […]

I’m not saying you should never express that you want a cure or that you think using autism as an insult is okay. […] But you need to be very careful why and how you express these opinions, because ableists will use your voice as justification to hurt people […]

Anna

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When we stop talking about ‘curing autism’ and start talking about ‘relieving autistic suffering’, the research takes on a whole new direction. When we stop using the cognitive shortcut ‘autism’ and start describing the exact problematic behaviors and traits that are experienced as a result of environmental, physiological, or social factors […] we may actually start having productive conversations about autism […]

VisualVox

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On the one hand, I read about how people need to find the positives in their conditions to help maintain self esteem and find a balance, and that makes sense.

On the other hand, I think that if we define the condition in terms of deficits, then the creativity and energy belong to the person, not the condition. And then, the reluctance to be free of the condition (assuming such a thing is possible) disappears.

Out of context, Sarah K Reece

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The truth is – if someone had offered me a ‘cure’ that would make me completely neurotypical in the first twenty three or so years of my life, I would have torn off their hand to get it.

That’s not an admission of defeat on the topic of neurodiversity, or a surrender to the idea that a ‘cure’ for autism is something that is wanted or needed. In fact, it’s one of the core reasons that I advocate so strongly against the very idea of finding a ‘cure’.

[…]

These arguments [that support the choice of a cure] fail to address the fact that the issue here is not being autistic or being LGBTQIA+. The issue is ableism, homophobia, transphobia and all those ways that the world crushes down on you, repeating again and again that you are wrong, that you are defective, that the word was not built for you; a world that demands that you cut off your corners to fit through the hole, when the true answer was to widen the hole altogether.

Erin Ekins

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I’ve thought a lot about that mythical cure, and there have been days, many days, when I didn’t have to think at all – when I knew that, if I had a chance, I’d take a cure in a heartbeat.

I want the things a cure could give me. […]

Can you look at the list of things I want, and tell me if you see a pattern?

Every single one of those things I want?

Have nothing to do with being autistic.

In the end, there are really two things I want when I say I wish I wasn’t autistic or I want a cure. I want to not feel like a freak, and I want to feel safe. Those are hard, scary things to feel and to admit. And, because I’m being honest, I have to ask something even scarier.

What if being cured didn’t fix those things?

Julia Bascom

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We need to rally for mutual respect. We need to rally for diversity. We need to rally for healing. And yes, some of us choose to rally for cures and therapies and miracles. But I think that can be done in a way that isn’t going to hurt others. I think it can be done in a way that makes people look at us in awe and think, “Wow, now there is a group of people that can disagree without bullying one another.” […]

I choose not to say SUCK IT AUTISM on my blog anymore. I mean, I will say it sucks in my head every once in a while, because truth be told, it’s just how I feel sometimes; I don’t want to lie to you. It really is how I feel sometimes. Not every second, not every minute, not even every day. But I do think and feel it sometimes.

But I know now what that particular phrase is capable of and while it invigorated me when I used it the other day, it brought other people to tears when they heard it. And I’ll tell ya, nothing takes the wind out of my sails like realizing just how much damage something I write can cause. […]

Jo Ashline

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[…] And for that matter the whole cure topic gets oversimplified the same way.

While I strongly disagree with the notion of cure and all it represents, not all decent people have even heard of my point of view and not all decent people would agree with me once they did.

I have worked right alongside people who want cures (some of whom even did ‘biomed’), in order to fight for good adult services, against restraints and seclusion, against institutions in all their forms from huge to tiny and stereotypical to stealth, and a lot of other issues that we can agree on.

And I have met anti-cure people who are aspie supremacists, who do great harm to autistic people (especially those they perceive as inferior), and who I would rarely if ever find anything to agree with them on, not even the reasons for opposing cure.

Mel Baggs

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Basically, if there were to legitimately be no pressure to become neurotypical, if being autistic were actually OK, if it were a choice a person made for themself and only themself, with informed consent […] in that world? If it existed, and they chose it, I would shake their hands and wish them luck.

In the world we actually live in, I expect that the cure would be forcibly used on children, […] on anyone who receives services, and for any portions of the autistic community who technically were getting it only under informed consent, choosing not to would be used as a sign of incompetence, at which point it would be forced. That means any organization that states finding a cure as a mission is inherently not trusted.

Alyssa Hillary

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Unlike the porous and broad meaning of ‘disability’ – a word that has come to reflect the potential for community building and solidarity across difference in many disability communities – philosophical and medical framings of ‘severe disability’ presume undesirability, objective tragedy, and potentially a lack of personhood.

Sunaura Taylor

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