Categories
Spotlight

Truth Beacon – Advocacy

“Shut up and listen to marginalized people” isn’t quite the right rule […] We need to do better by each other, and start listening for real.

Ruti Regan

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[…] The whole thing is set up in a way where the only way to move forward is to find something to oppose and devour. There is never a point where the way you do things is good enough. You have to find more and more words and ideas to oppose. Words and ideas that mark who is in the know, and who is bad. These things constantly change.

[…]

Within this culture, you stop noticing your surroundings. Instead, you see a network of lines representing various power dynamics, bad words and ideas, good words and ideas, and the way this community responds to them. You stop being able to see that this is not the only way to respond to injustice.

Mel Baggs

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[It’s possible that one who] outwardly celebrates the diversity in labels, doesn’t necessarily celebrate the diversity of thought – not seeming to grasp that the two by necessity has to go together. A group of diverse people would take different routes to achieve a purpose. They would have different ideas on how to do it, when to do it.

potteresque-ire

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[…] Autonomy as a value of deliberative democracy is contested by non-disabled family members who advocate with their disabled family members in order to portray the interdependency of their interests. Charlie’s experience thus gives new meaning to the value of reciprocity in deliberative democratic theory, moving it away from mutual competence towards mutual dependence.

Stacy Clifford

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People everywhere, every day are trying to navigate {many} kinds of dilemmas, and {some of the time} are doing so in a culture that refuses to discuss {them}.

Partial quote, Sarah K Reece

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When new ideas emerge in society there is usually discussion about them. It’s a sound general principle –  the best way to evaluate new ideas is to explore them critically and freely.

{Plenty of} issues […] are of importance to society as a whole. […] Surely we can agree that {people, especially the referred groups} should have the right to discuss it?

This must be done in an atmosphere of mutual respect in which anyone is free to critically discuss anything they wish, using whatever (respectful) terminology they choose.

The underlying issues, {redefinitions, and introduction of new concepts} must be seen for what they are: nobody’s exclusive property.

Partial quote, Jonathan Best

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In the same series:

Categories
Spectrum

Lines – Glass (Part 3)

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:

Categories
Positions

Acceptance

Major concept: Neurodiversity

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Kindness without respect is worthless

Erin Human

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Just like you shouldn’t force people to be proud of their autism, you shouldn’t force people to be ashamed of it either.

2Pacula_Was_Taken

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Now if we could only get the rest of the world to calm down and not stereotype [my son], we might get some serious quality of life improvements and more stress-free community inclusion going forward.

Mrs. Kerima Çevik

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Acceptance is not
giving up […]
doing nothing […]
what happens after you’ve fixed someone to your liking
[or] throwing away all rules, manners, education, skills and coping strategies.

Cynthia Kim

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Neurodiversity isn’t about pretending that autism, other developmental disabilities and psychiatric disabilities are all sunshine and rainbows. It’s about believing that we should be able to live our lives on our own terms and that our community should continue to exist, and doing whatever we can to make sure that happens.

Shain M. Neumeier

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Most parents are scared, insecure, unsupported and exhausted. […]

As autistic adults, we say that we are the real experts on autism by virtue of our lived experience. By the same logic, you can’t claim to be an expert on parenting if you’re not a parent. […]

Parents, in turn, don’t always listen to autistic adults as much as they should and thereby miss out on some very valuable insights.

Maura Campbell

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Growing up autistic in a world made for non-autistic minds is difficult. Then again, so is growing up lefty in a world made for righties.

It’s not better or worse – just different. Families with lefties, women, people of color, LGBQT, and kids with disabilities love each other exactly as they are and wouldn’t trade them for a child who has an easier path ahead. Raising a child on the autism spectrum has its challenges, but so does raising any child. All of us will have our obstacles.

Ashia Ray

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I come down, on the whole, firmly on the side of the self-advocates; I think it is critical to listen carefully to what any marginalized community says about their own experiences.

At the same time, I think they sometimes forget that many parents do not have the tools or the ability to build a fully autism-friendly life for their children, and that some compromises simply have to be made (as much as I hate them) at this point, in order for an autistic child to be integrated into our terribly narrow-minded society. […]

Restless Hands

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When parents like me talk about our kids with disabilities and intense support needs, we have to be thoughtful. We need to make it quite clear that our kids are much-loved and very awesome human beings. We should never, ever state or imply that any challenges we face as a parent are our children’s fault. We need to handle their privacy with delicacy. And we shouldn’t accidentally enable disrespect towards children who are already too-frequent magnets for morbid fascination, and pity.

But we do need to talk, because our parenting gig is not like other parenting gigs. It just isn’t. We, our kids, and our families need different supports than families whose kids don’t have disabilities, and we often need a lot of them. Sometimes we’re not always sure where to find those supports, or even aware of available supports; sometimes we’re ashamed to pursue the supports we and our kids need. And not having the supports we need for the best quality of life possible can lead to unnecessary hardship for everyone involved.

So, let’s talk about what parents like us need, and especially how to get what we need. But first, I need to be forthright on one matter: In no way does lack of services excuse harming our children. Ever. […]

Shannon Des Roches Rosa

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You are right; we cannot make your autistic loved one non-disabled. But we can help make a future that has room for people like your child in it, complete with the rights, the access, and the supports they need to live their fullest life. We think that that is doable. We think that that is right.

Yes, autistic lives are different. Yes, they are often hard. No, they will not look like the lives of non-disabled people.

We just don’t think that that makes disabled lives wrong.

Emily Paige Ballou 

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For seven years, we’ve been drowning. And since autism is synonymous with all things good, acceptable, and neurodiverse in this world, and since all kids with autism are simply wired differently, and since doctors who say otherwise are quacks, and since parents who think otherwise are in denial or worse, we’ve been forced to remain silent about our pain and our reality.

For seven years, the autism label slapped on my son’s medical condition has given doctors a reason to dismiss his suffering, friends a reason to be angered by our failure to show up at important events, and family members a reason to question our sanity and criticize our parenting skills.

My son’s autism label gave us a reason to just shut up. Even in our darkest moments, we reported our family was ‘fine, thanks.’ We trudged forward, shamed into silence. To say we did not accept our son’s assignment to autism as his destiny, that we were searching for a Get Out of Autism Jail Free card, would have been perceived in the same manner as if we were to say we did not love our son. That he was intrinsically bad, and wrong, and not what we had hoped for.

Ashlyn Washington

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