aesmael

I don't like that I've fallen back into starting diary entries, not finishing them, and leaving them abandoned. There is a good chance this will become another. It feels weird that life is both too much and yet it also feeling as though nothing is happening. I don't really believe that is a paradox, although it does feel like one. The mundane of life builds up and I have difficulty making space for the dream.

In fact my life isn't that hectic, so although I believe our lives are shaped and pressured into desperations which keep us too frantic for survival to do much beyond creating value for others and zonking out, much of my own problem is I suppose that technically I'm disabled? Or disability-adjacent anyway. Being certainly autistic and perhaps also ADHD makes it difficult to perform needful things effectively and to organise my time. So I feel like I could do more (that I wish to do).

Lately I have been interested in keeping a wiki as a structured and interlinked repository for my notes and projects. First I tried Instiki  but was stymied when the build instructions failed - it looks like there is a problem either with the script they provide for windows or with the rubyinstaller tool. Easier to believe the problem is with Instiki as rubyinstaller is surely more widely used, and it wouldn't be acceptable if that just did not work. I'm hoping to pick at these and untangle them into something that does work for me, but the difficulties I described in the previous paragraph mean I'm not findign that easy to do. Meanwhile I'm trying out dokuwiki and zim, which were both straightforward installs.

It became much easier to find channels within my followed list on twitch when I realised that like all corporate social platforms, it would be structured to incentivise addictive engagement. A simple way to pursue this goal is to try and maximise the opportunity for diverting me into impulse watching by placing recent subscriptions and channels I've been watching VODs on at the bottom of the offline channel list. And of course the ones actively broadcasting are at the top, sorted by popularity. So far this hypothesis is holding up well.

Originally published at a denizen's entertainment. You can comment here or there.

This is something which has been going around. I'm not a published writer and I don't know if anyone who might be reading this is, but I think this is important and maybe posting about it will help in some way. So, here is a substantial quote from a post by Charles Stross:

Turning to a different aspect of communications technology, I'd like to pass on a note from Knowledge Ecology International (KEI) (who describe themselves as "a not for profit non-governmental organization that searches for better outcomes, including new solutions, to the management of knowledge resources, as is described in http://www.keionline.org.")

We are distributing a letter (in English and Spanish) to writers, journalists and authors who support the World Blind Union WIPO treaty proposal to improve access to books in formats accessible to people who are blind, visual impaired or have other disabilities.
The World Blind Union has been for years requesting a new international legal framework that will allow them to produce and share accessible formats of books and other written material.

The World Blind Union treaty proposal, formally endorsed by Brazil, Ecuador and Paraguay is supported by nearly all developing countries and by disabilities and consumer organizations but the position that developed countries, like the European governments and United States, will take next week is still unclear.

Why is it urgent: Next week the treaty proposal is going to be discussed at the World Intellectual Property Organization (WIPO) in Geneva. This is the website for the WIPO meeting.

A fact Sheet that explains the treaty proposal is available here (PDF).

They're looking for writers and asking them to sign the petition: interested parties should contact Judit Rius at judit.rius(at)keionline.org. My take on it is that this is an unequivocally good cause, and I'll be signing KEI's letter. One of the big problems with electronic media and DRM is that they tend to lock the visually handicapped out; for example, a common restriction on ebooks is to disable the "read aloud" feature offered by Kindle and other readers. Such behaviour is discriminatory and (in some jurisdictions) illegal, but it's going to be hard to prevent it spreading without something like this proposed treaty.

Quoting seemed the most effective way to communicate this information. I wanted not to misrepresent anything.

Accommodation and accessibility are among those mostly unnoticed things. When they are brought to our attention our response might be approving. It might be a scowling grumbling about expense, inconvenience and 'whining'. Might be something else, probably - humans are varied, though sometimes they seem distressingly monotonous.

Perhaps that is a poor preface. I have been thinking about accessibility and the difficulty that is had, the resistance to introducing new accessibility measures and having them implemented and maintained, especially widely. There is a bit of grim amusement in my consideration of that, lately, because really we worked so did so well on some accessibility so far, enough for maybe most of us, but there is so much resistance to going any further with it.

A lot of us with visual impairments have access to corrective lenses. Not all of us; I'd be shocked if easy quality glasses access weren't mainly the domain of middle class and up citizens of nations that call themselves 1st World. We make doors that most of us can reach and open easily. Reaching elevated locations we often put in stairs and expect them to be sized for our common feet and gait. Inside we add illumination, though not all of us need it.

Our signs are displayed in EM frequencies we can see; we use colours we can clearly differentiate as markers. We use auditory frequencies we can hear. We make our clothes out of materials which do not irritate our skin. We provide ourselves with foods which do not make ourselves sick or kill us. We refrain from filling our environments with pervasive, irritating sounds. We do not decorate with odours like onions or faecal matter because these produce adverse reactions in us. We don't use strobe lighting in work environments and consider it a problem to fix when we cannot accurately perceive our environment because of how it is structured. When we build structures we size them so that most of us can get around easily inside and outside, with enough room that we don't become stuck or unable to proceed.

It is a very long list. I doubt I have been anywhere near comprehensive and a lot of people could probably find glaring omissions in what I managed to come up with. The point being aimed at is that humans put a lot of effort into making their environment accessible to a subset of themselves. Comprehensively enough and long enough that most don't realise that a lot of why people with disabilities can have difficulty getting around and accessing things it is because they weren't included among those people initially built their world to suit and now when they point it out and say they want it changed, many see it as an extra imposition instead of a continuation of the work and attitudes that went into making navigating the world so easy for them.

Accessibility isn't something extra. It is the demand an incomplete work be continued.

I have seen it happen often enough to regard it as a pattern.

People who characterise themselves as parents of autistic children, who appear to regard autism as a debilitating disease to be cured, or a form of poisoning to be cleansed of. They say autistic self-advocates, people who advocate for neurodiversity, they characterise those people as "high-functioning Asperger's" who get through life fine and don't need other than the usual assistance everyone gets, characterised as wanting to trumpet themselves splendid untroubled individuals equal or superior to the rest of humanity. They say that these advocates, in their drive to present themselves as just fine are stomping over the parents' children getting access to services, treatment and cures all as part of their selfish self-aggrandisement.

What do they say? They say wrong, for one. Many autistic advocates are not those who would be diagnosed with Asperger's Syndrome. Many are not verbal, or not always. Many need carers or some similar arrangement. Many, as they have pointed out, are no different in diagnostic status and outward appearance from the children these parents say they are speaking for. So they're not right, when they say those things.

What do they say? They characterise people who do or could have a diagnosis of Asperger's Syndrome as people who are just fine. People who are utterly unconnected from 'real autism' and who do not experience any problems worth calling 'serious'.

So what they do, in order to protect their children from these people who are advocating that their children (as a subset of neurodiverse people) deserve consideration, access, recognition as valid people, support and all those nifty things, what they do is contribute to a discourse and public atmosphere which makes it harder for people to gain access to support or being taken seriously.

In trying to say "Stop telling me chelating (and other 'treatments') is useless, stop telling me my child is fine and does not need to be un-broken" they end up saying "Shut up. You don't even need or want access / services / accommodation, you have no right to an opinion or to be taken seriously about issues that affect you."

I've written and deleted a lot of concluding paragraphs for this post, mainly because I found all the constructions I attempted to be suggestive that one of those expressions is more or less of a problem than the other. Then I noticed my "In trying to say [...] they end up saying [...]" construction could be read also as implying a progression of reprehensibility. This paragraph is for explicitly disclaiming that meaning.

Originally published at a denizen's entertainment. You can comment here or there.

Recently the organisation Autism Speaks released another video. You can see it by following this link here. A transcription of the audio can be read here. This is the outcome of "[a] press release [from August that] encouraged families to submit videos of autistic individuals for a PSA that would "shine a bright spotlight" on autism."

Naturally I and a whole lot of other people take issue with this supposed public service announcement[1]. It wouldn't be fair, though, to attribute the views expressed in that video to all members of families of autistic people, nor even necessarily to all people who contributed footage to the final product. abfh|Whose Planet Is It Anyway? points out that people have felt deceived by this request and the results:

Would the contributors to the "I Am Autism" video have agreed to participate if Autism Speaks had admitted at the outset that it was planning to demonize autistic kids as embarrassing burdens who destroy their parents' marriages and dreams?

Well, at least one parent who posted a comment on the video's YouTube page, under the name BarrysDaughter, made it quite plain that she felt deceived by Autism Speaks' request for video contributions from parents. She wrote:

"I do have 2 autistic children and a husband on the spectrum. When they first suggested a video I was eager to send them one till they outlined what they wanted.

My children and husband don't want or need to be CURED what they do want is people to treat them the same as anyone else, stop the bullying and put more staff in schools to support them…"

My problems with the video. It is not addressed to autistic people. Indeed, the request for videos and the result of this request, despite being purpotedly for an autistic advocacy organisation, does not acknowledge the existence of autistic people. They don't talk to autistic people, they talk to the families of autistic people. They don't acknowledge that autistic people may have desires, or acknowledge anything as being a problem for autistic people which those people might want something done about. No, they address the desires of families of autistic people, they talk about what families of autistic people want for their own benefit, they talk about the suffering of people who associate with autistic people, they describe the autistic community as 'people who know autistic people'.

There is a tremendous failure of empathy on display in their selfish wish to eradicate autism from existence. Do not pretend they speak only of those to whom terms like 'low-functioning' or 'severe' are applied when they use words like

"I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain. You have no cure for me."

Is there any moderation in that? Any room for them to say "Ah, but we do not mean you who are 'high-functioning'? (by which is meant "Your life is easy, you have no problems and no relevance to this subject, so be silent")" It is a plain statement of what Autism Speaks considers autism to be - a debilitating and horrific condition which must be eradicated. No acknowledgement of the voices of autistic people. Rather, those are described as stolen away, so that others can pretend to know what these voiceless unfortunates want and claim desires in their name.

What they are doing, is not helping. Help would be to reduce the stigma of autism. Help would be to not portray it as some malevolent force which steals otherwise 'normal' children and hides them behind a monstrous facade. Help would be not be not comparing autism to a fatal illness. Help would be acknowledging the existence of autistic adults. Help would be pushing for the ready availability of accommodations that will aid autistic people and others with disabilities. Help would be publicly speaking out against the vast number of sham 'cures' which do nothing, or worse, so that people do not go bankrupt on the false hope of rescuing their family from the hell you have convinced them autism dooms them to. Help would be supporting health care reform so people do not have to worry about going bankrupt for medical reasons. Help would be listening to autistic people instead of speaking over them.

Not all of those things are entirely absent from their website on inspection, but they have a long way to go if they ever want to be a resource and organisation for the benefit of autistic people. Right now they look more like an organisation focused on eugenics to eradicate a segment of the population. I'm sure they don't see it that way. I expect they believe the best outcome for autistic people would be to cease being autistic and eventually cease being born, instead of whatever each autistic person considers eir personal preferred outcome. Accommodation and support I think benefits everyone, while the current state of Autism Speaks' rhetoric does not.

Further responses to this video and the organisation behind it can be found here: http://autisticbfh.blogspot.com/2009/09/solidarity.html

[1] Also annoyed by people who leap on the statement that among faith, technology, prayer, herbs and genetic studies people will also fight autism with voodoo, as something outrageous. Though I would not be surprised to learn either that this was included as an example of desperation, still voodoo despite being a religion associated with black people rather than white is not any more or less silly a thing to call on than, say, Christianity.

Power makes you proud, and power
Comes in many fine forms
Supple and rich as butterfly wings.
It is music
when you practise opening your mouth
And liking what you hear
Because it is the sound of your own
True voice.


It is sunlight
When you practise seeing
Strength and beauty in everyone,
Including yourself.
It is dance
when you practise knowing
That what you do
And the way you do it
Is the right way for you
And cannot be called wrong.
All these hold
More power than weapons or money
Or lies?


Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practise,
Practise until you get proud,
and once you are proud,
Keep practising so you won’t forget.
You get proud
By practising.

from You get proud by practising by Laura Hershey, poet and disability activist.

The previous was to assignment relevant, this was turned up on the way.