I came up with the name Autistics Speaking Day rather impulsively, when
it was mainly a jab at Communication Shutdown and somewhat towards a
certain big-name "Autism fundraising" organization, and when I didn't
expect my proposal to be so well received. I kept the name mainly for
the history of it and the nifty acronym it created. However, there is an issue with it, an issue that I have been all too aware of from the very
beginning.
The issue of the word "Speaking".
The implications of the name has both Kathryn and I concerned. We have tried to make it clear that we consider the "Speaking" part to be figurative, that communication of any sort is welcome here, that what matters is that Autistics who want to participate can do so, in whatever way they feel the most comfortable, to communicate what they want other people to know about themselves, about their lives, about being Autistic, anything at all.
Yet, the issue remains, and the last thing either of us want to do is continue with it unaddressed. We would rather address it now, when we can get the feedback of the community and have the time to make the changes needed in preparation for next year (assuming that people still want ASDay to continue).
So, we ask our community: would it be more inclusive if we changed the name of Autistics Speaking Day? If yes, then what do you suggest we change it to?
Please follow the link to the poll form and submit your response there. Or else leave a comment here.
To raising Autism awareness and Acceptance, and battling negative stereotypes about Autism. To advocate for the inclusion of Autistic people in the community. To offer a forum to broadcast our stories and thoughts, and to help the messages of Autistic people and non-Austistic allies reach as many people as possible.
Tuesday, November 15, 2011
Monday, November 14, 2011
Juste un Message/ Just something to say
Ole Ferme L'Oeil has written Juste un Message/ Just something to say on le pays des humains volants
I suppose this text could be considered as a very late contribution to the Autistics Speaking Day.
English version is after the french version.
Français:
Je suis Autiste.
Je préfère être qualifié d'Autiste ou de "Personne Autiste" plutôt que de "personne avec autisme"
Je considère l'Autisme comme une partie intégrante de qui je suis, je ne pense pas que je serai le même sans ça.
Je ne considère pas l'Autisme comme quelque-chose d'universellement négatif, je pense qu'outre mon identité, mes qualités sont intrinsèquement mêlée à mon autisme.
Je ne laisse pas à quiconque le droit de réfuter cet aspect de mon identité, ma perception de moi-même, je suis la personne la plus à même de définir ce qui ce passe en moi ainsi que qui je suis.
Je sais que toutes les personnes autistes ne partagent pas tous les mêmes traits que moi, certains sont même très différents de moi, comme beaucoup de mes amis dans le spectre autistique le disent "quand tu as rencontré une personne dans le spectre tu n'as rencontré qu'une seule personne dans le spectre"
Ces différences n'ont pas seulement à voir avec le diagnostique précis, certaines personnes qui sont répertoriées sous un autre diagnostique sont bien plus proches de moi que des personnes qui partagent mon diagnostique.
Je sais aussi que toutes les personnes dans le spectre ne partagent pas mon opinion.
Et cela n'a pas forcément quelque-chose à voir avec leur diagnostique précis ou si ils me ressemblent ou non.
Certains préfèrent être qualifiés de "personnes avec autisme" d'autres préfèrent d'autres termes encore.
Certains ne considèrent pas du tout l'Autisme comme une partie intégrante de leur identité, considèrent qu'ils seraient les mêmes, ou même mieux si ils n'étaient pas autistes.
Certains détestent leur autisme.
Parmi eux certains n'ont pas la même idée que moi de ce qui constitue l'autisme, d'autres si.
Je ne les contredis pas.
Quand je reconnais le droit à l'auto-définition, lorsque je le revendique je le leur reconnais aussi.
Ce n'est pas à moi de définir quelle devrait être leur expérience de l'Autisme.
Certaines personnes considéreront comme partie intégrante de l'Autisme des traits qui pour moi n'en font pas partie, que je ne partage pas forcément, ce n'est pas à moi de les contredire. (enfin, si, je peux les contredire sur l'universalité de cette expérience de l'autisme, et le ferai probablement si je suis assez en confiance et ai assez d'énergie émotionnelle ce jour là)
Certaines personnes qui partagent avec moi des traits que je considère comme part fondamentale de l'Autisme, ne se considèrent pas comme autistes...
Tant qu'ils ne se considèrent pas comme autistes, ils ne le sont pas, je n'ai pas à les contredire.
Oui l'autisme est un diagnostique, mais oui c'est aussi une identité, je ne laisserai pas des docteurs avoir tous les droits de définition de mon identité, mais je ne contredirai pas tous ceux qui font confiance à leur docteur pour tout ce qui concerne leur diagnostique, ce choix fait aussi partie de leur droit à l'auto-définition.
Je pense que rien de ce que j'ai dit ici n'est contradictoire.
Je ne pense pas que ne pas définir l'autisme comme quelque-chose d'intrinsèquement négatif revienne à prétendre que tout est rose pour les personnes autistes, je sais que beaucoup d'autistes qui comme moi considèrent l'autisme comme quelque-chose de positif ou de neutre et/ou comme une partie intégrante de qui ils sont, vivent des choses très difficiles, voire terribles.
Je crois au fait de différencier l'autisme des injustices et souffrances que la société peut faire subir aux personnes autistes, ainsi que du manque d’aménagements et d'adaptations disponibles
Certaines personnes qui sont d'accord avec moi sur cet aspect politique et social, font partie de ceux qui n'aiment pas leur autisme, ou ne le considèrent pas comme faisant pleinement partie d'eux-même, ou ne se considèrent pas comme autistes (voire n'ont aucun des traits autistiques, nous avons aussi des alliés... d'ailleurs cet aspect des choses est loin de ne s'appliquer qu'à l'autisme).
Ce n'est pas contradictoire, c'est une application du droit à l'autodéfinition
En tant qu'Autiste, Je me considère aussi comme une personne handicapée.
Je préfère les termes, personne handicapée ou personne en situation de handicap, je préfère éviter "personne avec un handicap"
Je me considère handicapé selon le modèle social du handicap*, je n'accepte que cette définition (ou peut-être les plus radicales).
Dans ce domaine aussi je crois à l'auto-définition.
Je crois à l'auto-définition pour tous, peut-importe le niveau de Q.I., l'âge ou que l'on soit verbal ou non verbal**, même si ça ne passe pas par la parole ou même par des mots.
Il fallait que j'exprime cela.
Si vous voulez en savoir plus sur mes opinions sur le sujet, et sur celles de personnes avec qui je suis généralement assez en accord, voyez cet ancien post du Jour de parole pour les autistes.
(Je préviens que je risque de trier les commentaires car je parlais ici d'un droit que je considère comme fondamental et que je ne suis pas toujours en grande forme ces temps-ci)
* J'ai déjà évoqué ce modèle ici et tâché de l'illustrer un peu là
**à peu près à ce sujet, je vous encourage... non, je vous exhorte à lire ce texte de Neurodivergent K. traduit par Benoit
English: (my English is not perfect, Sorry)
I am Autistic.
I want to be called an "Autistic" or an "Autistic Person", not a "Person With Autism"
I think that Autism is part of myself of who I am, I think I wouldn't be the same if I wasn't autistic.
I don't define Autism as something universally negative, I think that in addition to my identity, my gifts and strengths are entirely linked to my Autism.
I won't let anyone refute this aspect of my identity, my perception of myself, I am the best person to define what happens inside me and who I am.
I know all the people on the Autism spectrum don't share all the same features that I have, They are very diverse, some have very little in common with me, as a lot of my friends on the autism spectrum say it "When you have met only one person on the spectrum, you have met only one person."
these variation don't have that much to do with the exact diagnosis I received, Some people who have a different diagnosis than me have a lot more in common with me than some people who share my diagnosis.
I also know that not all the people on the spectrum share my opinions.
And this doesn't have to be about their diagonosis or how much they have in common with me.
Some prefer to be called "Persons With Autism" others prefer others teminologies.
Some don't see Autism as an important part of their identity at all, think that they would be the sames, or even better if they weren't autistics.
Some hate their autism.
Some of those don't have the same definition of what constitue autism that I have, some have almost the same.
I don't contradict them.
When I recognize the right to self-definition, When I revendicate it for myself I revendicate it for them too.
It is not up to me to define what should be their experience of Autism.
Some people will define as main characteristics of autism some characteristics that for me are not part of it, and that I may not even share, it is not up to me to contradict them on their experience and self definition of Autism (but I can contradict them on the universality of this experience of autism... and probably will if I am confident and have enough emotional spoons this day!).
Some people who share with me some characteristics that I think are core parts of Autism, don't identify as on the autism spectrum...
As long as they say that they aren't autistics, they aren't, I don't have to contradict them.
Yes "Autism spectrum disorder" (I loathe the word "disorder") IS a diagnosis, But AUTISIC IS ALSO an Identity, I won't let proffessionals have the right to define my identity, but I won't contradict those who trusts proffessionals (and "experts") to define anything that has to do with their diagnosis, this choice is also a part of their right to self-definition.
I don't think that I contradicted myself on anything I said here.
I am convinced that refusing to define Autism as an intrinsically negative thing IS NOT THE SAME as to impy that everything is o.k., perfect angd happy for all autistic people, I know that a lot of autistics people who, like me think of Autism as something positive or neutral and/or as an important part of who they are, are living very difficults or even horrible things (and in the worst cases are dying of it).
I believe in making a distiction between Autism in itself and the oppression that autistic people experienced coming from society, and the lack of accomodations for autistics people.
Some people who agree with me on this political and social aspect, are part of those who don't like their Autism (or hate it), or don't think it is a full and important part of themselves, or even don't identify as Autistics (or don't have any characteristics of Autism... I mean there are also allies... and these political and social oppressions are a problem for way more people than just autistics people, I think I am not teaching you anything there... well at least I hope so.).
All this is not a contradiction, it's an application of the right to self-definition.
As an Autistic Person, I also consider myself as a disabled person.
I prefer the "disabled person" terminology, I tolerate "handicapped" but I personally hate "person with disability", please, never use it to define me!
I consider myself disabled according to the Social model of Disability only*, I only accept this définition of being disabled (or maybe more radical models!**).
In this domain too I believe in the right to Self-definition.
I believe in Self-Definition for anybody, no matters the results of I.Q. tests, the age or if the person is verbal or not***, even without using speach or even words.
I had to express it.
If you want to know more about my opinions on this subject, and opinions of people I generally agree with, you can try my Autistics Speaking Day post of last year
(I have to warn you, I could moderate comments, I am not doing very well these times and this post express something I don't even want that much to debate on)
* On the social model of Disability: you can read this and if you want a further explication of why I only accept this model try this Wonderful post!
** On the radical models
***Kind of on this subject, I exhort you to read this post from Neurodivergent K very Important to read!
I suppose this text could be considered as a very late contribution to the Autistics Speaking Day.
English version is after the french version.
Français:
Je suis Autiste.
Je préfère être qualifié d'Autiste ou de "Personne Autiste" plutôt que de "personne avec autisme"
Je considère l'Autisme comme une partie intégrante de qui je suis, je ne pense pas que je serai le même sans ça.
Je ne considère pas l'Autisme comme quelque-chose d'universellement négatif, je pense qu'outre mon identité, mes qualités sont intrinsèquement mêlée à mon autisme.
Je ne laisse pas à quiconque le droit de réfuter cet aspect de mon identité, ma perception de moi-même, je suis la personne la plus à même de définir ce qui ce passe en moi ainsi que qui je suis.
Je sais que toutes les personnes autistes ne partagent pas tous les mêmes traits que moi, certains sont même très différents de moi, comme beaucoup de mes amis dans le spectre autistique le disent "quand tu as rencontré une personne dans le spectre tu n'as rencontré qu'une seule personne dans le spectre"
Ces différences n'ont pas seulement à voir avec le diagnostique précis, certaines personnes qui sont répertoriées sous un autre diagnostique sont bien plus proches de moi que des personnes qui partagent mon diagnostique.
Je sais aussi que toutes les personnes dans le spectre ne partagent pas mon opinion.
Et cela n'a pas forcément quelque-chose à voir avec leur diagnostique précis ou si ils me ressemblent ou non.
Certains préfèrent être qualifiés de "personnes avec autisme" d'autres préfèrent d'autres termes encore.
Certains ne considèrent pas du tout l'Autisme comme une partie intégrante de leur identité, considèrent qu'ils seraient les mêmes, ou même mieux si ils n'étaient pas autistes.
Certains détestent leur autisme.
Parmi eux certains n'ont pas la même idée que moi de ce qui constitue l'autisme, d'autres si.
Je ne les contredis pas.
Quand je reconnais le droit à l'auto-définition, lorsque je le revendique je le leur reconnais aussi.
Ce n'est pas à moi de définir quelle devrait être leur expérience de l'Autisme.
Certaines personnes considéreront comme partie intégrante de l'Autisme des traits qui pour moi n'en font pas partie, que je ne partage pas forcément, ce n'est pas à moi de les contredire. (enfin, si, je peux les contredire sur l'universalité de cette expérience de l'autisme, et le ferai probablement si je suis assez en confiance et ai assez d'énergie émotionnelle ce jour là)
Certaines personnes qui partagent avec moi des traits que je considère comme part fondamentale de l'Autisme, ne se considèrent pas comme autistes...
Tant qu'ils ne se considèrent pas comme autistes, ils ne le sont pas, je n'ai pas à les contredire.
Oui l'autisme est un diagnostique, mais oui c'est aussi une identité, je ne laisserai pas des docteurs avoir tous les droits de définition de mon identité, mais je ne contredirai pas tous ceux qui font confiance à leur docteur pour tout ce qui concerne leur diagnostique, ce choix fait aussi partie de leur droit à l'auto-définition.
Je pense que rien de ce que j'ai dit ici n'est contradictoire.
Je ne pense pas que ne pas définir l'autisme comme quelque-chose d'intrinsèquement négatif revienne à prétendre que tout est rose pour les personnes autistes, je sais que beaucoup d'autistes qui comme moi considèrent l'autisme comme quelque-chose de positif ou de neutre et/ou comme une partie intégrante de qui ils sont, vivent des choses très difficiles, voire terribles.
Je crois au fait de différencier l'autisme des injustices et souffrances que la société peut faire subir aux personnes autistes, ainsi que du manque d’aménagements et d'adaptations disponibles
Certaines personnes qui sont d'accord avec moi sur cet aspect politique et social, font partie de ceux qui n'aiment pas leur autisme, ou ne le considèrent pas comme faisant pleinement partie d'eux-même, ou ne se considèrent pas comme autistes (voire n'ont aucun des traits autistiques, nous avons aussi des alliés... d'ailleurs cet aspect des choses est loin de ne s'appliquer qu'à l'autisme).
Ce n'est pas contradictoire, c'est une application du droit à l'autodéfinition
En tant qu'Autiste, Je me considère aussi comme une personne handicapée.
Je préfère les termes, personne handicapée ou personne en situation de handicap, je préfère éviter "personne avec un handicap"
Je me considère handicapé selon le modèle social du handicap*, je n'accepte que cette définition (ou peut-être les plus radicales).
Dans ce domaine aussi je crois à l'auto-définition.
Je crois à l'auto-définition pour tous, peut-importe le niveau de Q.I., l'âge ou que l'on soit verbal ou non verbal**, même si ça ne passe pas par la parole ou même par des mots.
Il fallait que j'exprime cela.
Si vous voulez en savoir plus sur mes opinions sur le sujet, et sur celles de personnes avec qui je suis généralement assez en accord, voyez cet ancien post du Jour de parole pour les autistes.
(Je préviens que je risque de trier les commentaires car je parlais ici d'un droit que je considère comme fondamental et que je ne suis pas toujours en grande forme ces temps-ci)
* J'ai déjà évoqué ce modèle ici et tâché de l'illustrer un peu là
**à peu près à ce sujet, je vous encourage... non, je vous exhorte à lire ce texte de Neurodivergent K. traduit par Benoit
English: (my English is not perfect, Sorry)
I am Autistic.
I want to be called an "Autistic" or an "Autistic Person", not a "Person With Autism"
I think that Autism is part of myself of who I am, I think I wouldn't be the same if I wasn't autistic.
I don't define Autism as something universally negative, I think that in addition to my identity, my gifts and strengths are entirely linked to my Autism.
I won't let anyone refute this aspect of my identity, my perception of myself, I am the best person to define what happens inside me and who I am.
I know all the people on the Autism spectrum don't share all the same features that I have, They are very diverse, some have very little in common with me, as a lot of my friends on the autism spectrum say it "When you have met only one person on the spectrum, you have met only one person."
these variation don't have that much to do with the exact diagnosis I received, Some people who have a different diagnosis than me have a lot more in common with me than some people who share my diagnosis.
I also know that not all the people on the spectrum share my opinions.
And this doesn't have to be about their diagonosis or how much they have in common with me.
Some prefer to be called "Persons With Autism" others prefer others teminologies.
Some don't see Autism as an important part of their identity at all, think that they would be the sames, or even better if they weren't autistics.
Some hate their autism.
Some of those don't have the same definition of what constitue autism that I have, some have almost the same.
I don't contradict them.
When I recognize the right to self-definition, When I revendicate it for myself I revendicate it for them too.
It is not up to me to define what should be their experience of Autism.
Some people will define as main characteristics of autism some characteristics that for me are not part of it, and that I may not even share, it is not up to me to contradict them on their experience and self definition of Autism (but I can contradict them on the universality of this experience of autism... and probably will if I am confident and have enough emotional spoons this day!).
Some people who share with me some characteristics that I think are core parts of Autism, don't identify as on the autism spectrum...
As long as they say that they aren't autistics, they aren't, I don't have to contradict them.
Yes "Autism spectrum disorder" (I loathe the word "disorder") IS a diagnosis, But AUTISIC IS ALSO an Identity, I won't let proffessionals have the right to define my identity, but I won't contradict those who trusts proffessionals (and "experts") to define anything that has to do with their diagnosis, this choice is also a part of their right to self-definition.
I don't think that I contradicted myself on anything I said here.
I am convinced that refusing to define Autism as an intrinsically negative thing IS NOT THE SAME as to impy that everything is o.k., perfect angd happy for all autistic people, I know that a lot of autistics people who, like me think of Autism as something positive or neutral and/or as an important part of who they are, are living very difficults or even horrible things (and in the worst cases are dying of it).
I believe in making a distiction between Autism in itself and the oppression that autistic people experienced coming from society, and the lack of accomodations for autistics people.
Some people who agree with me on this political and social aspect, are part of those who don't like their Autism (or hate it), or don't think it is a full and important part of themselves, or even don't identify as Autistics (or don't have any characteristics of Autism... I mean there are also allies... and these political and social oppressions are a problem for way more people than just autistics people, I think I am not teaching you anything there... well at least I hope so.).
All this is not a contradiction, it's an application of the right to self-definition.
As an Autistic Person, I also consider myself as a disabled person.
I prefer the "disabled person" terminology, I tolerate "handicapped" but I personally hate "person with disability", please, never use it to define me!
I consider myself disabled according to the Social model of Disability only*, I only accept this définition of being disabled (or maybe more radical models!**).
In this domain too I believe in the right to Self-definition.
I believe in Self-Definition for anybody, no matters the results of I.Q. tests, the age or if the person is verbal or not***, even without using speach or even words.
I had to express it.
If you want to know more about my opinions on this subject, and opinions of people I generally agree with, you can try my Autistics Speaking Day post of last year
(I have to warn you, I could moderate comments, I am not doing very well these times and this post express something I don't even want that much to debate on)
* On the social model of Disability: you can read this and if you want a further explication of why I only accept this model try this Wonderful post!
** On the radical models
***Kind of on this subject, I exhort you to read this post from Neurodivergent K very Important to read!
Sunday, November 6, 2011
Autism and Wonder: a Celebration in Photos
Cereus has celebrated ASDay with photographs in a post called Autism and Wonder: a Celebration in Photos on Dreamwidth
Nov 1st is Autistics Speaking Day!
Since I'm not particularly word-based right now and so much of my experience of autism is the world outside of words (and the connections and joys that go with that), today is going to be a picture day.
This is a celebration in photos:
Nov 1st is Autistics Speaking Day!
Since I'm not particularly word-based right now and so much of my experience of autism is the world outside of words (and the connections and joys that go with that), today is going to be a picture day.
This is a celebration in photos:
Thursday, November 3, 2011
First-class autistic, second-class citizen
Melanie Yergeau has written First-class autistic, second-class citizen on Aspie Rhetor:
I am running late. Again.
The emails I compose are all the same. I’m sorry for my delay in responding to you, I write. And then I stare at my screen, sometimes for two minutes, sometimes for two days, and try to remember my excuse. Why am I late? Which metaphorical crowbar wrenched its way into my mental machinery this time?
Lately, I conceive of my days as a series of perseverative loops. The new job, the new home, the new and utterly non-autistic community. I cannot pry myself from anything. One egg, one piece of toast, and one butter cookie for every single meal. I read each Facebook status update 47 times before and after posting. “Let’s do something together,” a new friend or a new colleague or a new frenemy will write. And then nine days pass, or 39 days pass, and I’m still working on a two-line email response. Perseverative loop. Lather, rinse, repeat.
I can’t remember the last time I ate a vegetable. I’m not distressed by this — I’m more distressed by other people’s distress. The jokes about anorexia throttle me into monologue mode, and I launch into impassioned rants — sometimes about disability studies, sometimes about feminism, and sometimes about how much I wish the F-word were a tangible object that I could lob at ableist, self-important hacks.
Oh, F-word. Materialize for me now. I repeat this line to myself. 47 times. 47 times.
The days are a blur. I cry most nights, wishing I were somewhere back in time, a time when I could wrench my fingers, rock my body, and speak without inflection. In a bookstore. In public. With half a dozen others who wrench their fingers, rock their bodies, and speak without inflection. I miss this autistic chorus.
But I am here, not there. Autistics Speaking Day
has come and gone, and here I am — still writing, still perseverating,
still ensconced in my words and my tears and my veggie-less
existence. My sense and use of time isn’t on par with the mythical norm.
I am learning, or trying to learn, to take comfort in my lateness, to
interpret my lateness as function without the dys, as function minus the -tio and n‘s. Fuc(k) function.
There are shitty moments on repeat in my head. The colleague who berates me for asking her to repeat instructions. The potential therapist who calls me a “phenomenal woman” for having the “courage” to lead a disabled existence. The internet trolls, plural, who variously tell me that I’m not autistic, that I’m ungrateful, that I lack the capacity to have capacity. The Autism $peaks undergraduates who, in response to me telling them how hurtful they are, claim that I “cannot silence” their “love.”
Perseverative loops, cumulative loops.
What I consider accommodating, they consider unreasonable.
What I consider insulting, they consider complimentary.
What I consider hate, they consider love.
What I consider feeling and compassion and emotion and just plain being in the world, they consider pathology and blight and madness and something just plain worthy of extermination.
And I wake up in the morning, ride the bus, step into a classroom, feign attention with my flat mousy voice and unruly hands. There are lists to make, silences to repeat, latenesses to embrace, F-words to embody. I take this as a lesson in breathing.
I am running late. Again.
The emails I compose are all the same. I’m sorry for my delay in responding to you, I write. And then I stare at my screen, sometimes for two minutes, sometimes for two days, and try to remember my excuse. Why am I late? Which metaphorical crowbar wrenched its way into my mental machinery this time?
Lately, I conceive of my days as a series of perseverative loops. The new job, the new home, the new and utterly non-autistic community. I cannot pry myself from anything. One egg, one piece of toast, and one butter cookie for every single meal. I read each Facebook status update 47 times before and after posting. “Let’s do something together,” a new friend or a new colleague or a new frenemy will write. And then nine days pass, or 39 days pass, and I’m still working on a two-line email response. Perseverative loop. Lather, rinse, repeat.
I can’t remember the last time I ate a vegetable. I’m not distressed by this — I’m more distressed by other people’s distress. The jokes about anorexia throttle me into monologue mode, and I launch into impassioned rants — sometimes about disability studies, sometimes about feminism, and sometimes about how much I wish the F-word were a tangible object that I could lob at ableist, self-important hacks.
Oh, F-word. Materialize for me now. I repeat this line to myself. 47 times. 47 times.
The days are a blur. I cry most nights, wishing I were somewhere back in time, a time when I could wrench my fingers, rock my body, and speak without inflection. In a bookstore. In public. With half a dozen others who wrench their fingers, rock their bodies, and speak without inflection. I miss this autistic chorus.
 |
| this |
There are shitty moments on repeat in my head. The colleague who berates me for asking her to repeat instructions. The potential therapist who calls me a “phenomenal woman” for having the “courage” to lead a disabled existence. The internet trolls, plural, who variously tell me that I’m not autistic, that I’m ungrateful, that I lack the capacity to have capacity. The Autism $peaks undergraduates who, in response to me telling them how hurtful they are, claim that I “cannot silence” their “love.”
Perseverative loops, cumulative loops.
What I consider accommodating, they consider unreasonable.
What I consider insulting, they consider complimentary.
What I consider hate, they consider love.
What I consider feeling and compassion and emotion and just plain being in the world, they consider pathology and blight and madness and something just plain worthy of extermination.
And I wake up in the morning, ride the bus, step into a classroom, feign attention with my flat mousy voice and unruly hands. There are lists to make, silences to repeat, latenesses to embrace, F-words to embody. I take this as a lesson in breathing.
Other things than speaking?
senoritafish has written "Other things than speaking?" on Visit the kelpforest:
So yesterday was Autistics Speaking Day (the autistic response to Communication Shutdown), and while I started this on the day, I'm finishing late, as per usual for me (writing as an ally, although I'm really not sure about myself). I'd asked Angus awhile ago if he'd like to participate himself, and all I really got was a frown; I'd sent him an email with a link about it, but he forgets to check it, friends don't email him like they do his brother, so if there's anything in there, it's probably from either me or his grandma, and what 13-year-old rushes to read those? In teenage fashion - which he is now - I theorize he's just thinking mom is bugging him again about something he's not really interested in. He's really not that interested in social media anyway - he does have a Tumblr account, but mostly likes the "Ask Anything" questions. He writes fairly detailed essays for school (and is praised quite a bit for vocabulary), but to do that outside of school? And not for fun? When he could be coming up with new comic book ideas or making up new piñata creatures for his Viva Piñata game...
Viva Pinata Ideas- Moosesicle by ~datadoggieein on deviantART
... or perusing various fan wikis for every last detail or trivia about the ones he has? Or going with me for a long walk, down to the end of the pier, maybe helping me find a geocache along the way? Coming up with the idea of being a plague doctor for Halloween, or even, finishing his homework - which he actually has been doing first, without prompting, lately (which I'm shocked and thrilled by, even I had problems with that).
Last night while I was making dinner, he did finally read the article I'd linked him to, brows knitted all the while, thought about it a bit, and then declared to me, "I'm not an auto-biographer, Mom!"
Ah well. Maybe in a few years, or in other mediums. Choosing to not speak (or write) when he could is also valid. He's got a lot of pressing issues just being an eighth grader. ;)
Go Listen.
So yesterday was Autistics Speaking Day (the autistic response to Communication Shutdown), and while I started this on the day, I'm finishing late, as per usual for me (writing as an ally, although I'm really not sure about myself). I'd asked Angus awhile ago if he'd like to participate himself, and all I really got was a frown; I'd sent him an email with a link about it, but he forgets to check it, friends don't email him like they do his brother, so if there's anything in there, it's probably from either me or his grandma, and what 13-year-old rushes to read those? In teenage fashion - which he is now - I theorize he's just thinking mom is bugging him again about something he's not really interested in. He's really not that interested in social media anyway - he does have a Tumblr account, but mostly likes the "Ask Anything" questions. He writes fairly detailed essays for school (and is praised quite a bit for vocabulary), but to do that outside of school? And not for fun? When he could be coming up with new comic book ideas or making up new piñata creatures for his Viva Piñata game...
Viva Pinata Ideas- Moosesicle by ~datadoggieein on deviantART
... or perusing various fan wikis for every last detail or trivia about the ones he has? Or going with me for a long walk, down to the end of the pier, maybe helping me find a geocache along the way? Coming up with the idea of being a plague doctor for Halloween, or even, finishing his homework - which he actually has been doing first, without prompting, lately (which I'm shocked and thrilled by, even I had problems with that).
Last night while I was making dinner, he did finally read the article I'd linked him to, brows knitted all the while, thought about it a bit, and then declared to me, "I'm not an auto-biographer, Mom!"
Ah well. Maybe in a few years, or in other mediums. Choosing to not speak (or write) when he could is also valid. He's got a lot of pressing issues just being an eighth grader. ;)
Go Listen.
Wednesday, November 2, 2011
My ASDay by Corina
(originally posted on No Stereotypes Here)
(Post does contain Trigger-Warnings for images of injuries, but images are under external link, so post has been deemed Safe)
I never did get to finishing and posting the two posts I had planned for Autistics Speaking Day. I was going to explore the link between poverty and disability, as well as take a look at how crisis lines are ableist (aka, why aren't there online crisis chat services, why aren't there mental health services that disabled people who find leaving their homes or picking up a phone to be a challenge?).
But it never happened. There was just a flood of posts coming in that between taking care of them (I read pretty much every single one) and doing my own daily tasks, I didn't have time to write my own!
Luckily, I had a plan in case this happened, and took photographs throughout the day. The ones I posted on Twitpic can be clicked on to see the full photo.
So, I bring you, My ASDay:
First, I started the day at the Sleep Clinic. I have severe sleep apnea and had stayed the night in order to get my CPAP pressure checked. Turns out, my pressure needed to be raised.
I woke up at 6am, and made my way home from the Clinic. My monthly bus pass had expired (new month), so I made a mental note to get it renewed. I'm on a Municipal Fee Assistance program, so I get a discount on monthly bus passes. I pay 46$ a month, instead of $60-something (the prices just went up, I used to pay $44).
I got home and noticed that I need to replace my bandaid. I had cut my finger at work. Here is a photo of it (which I'm not displaying here, for trigger warnings)
I also made sure to take my morning medications. I have two main meds that I take, one in the morning and one in the evening. The rest of my medications are as-needed meds, for things like acid reflux or when I need an extra boost to beat anxiety.
I sat down and started working on getting updating the ASDay blog. So many posts!!
At one point, I noticed a bit of a crash in the hall. A bit later, I went to investigate. The maintenance guy had been around, trying to fix the small window in our front door that had broke. He's been working on it for some time, and I think that it might be cheaper if the non-profit housing organization just replaced the door. It's an old door, original to the house, and it has quite a few cracks and leaks.
After that I spent some time chatting to my boyfriend, Dave, on Skype while I worked on putting up submissions.
Then my house-mate B asked whether I'd like to go grocery shopping with him. His case worker came to pick us up and took us to the grocery store. I got some new hair clips, because I am forever trying to find clips that won't fall out of my hair and I just got my hair cut. I also picked up some of the Halloween makeup glitter on sale, and a few treats. I mostly got things I needed, including things for my lunches to go to work.
Since we were near one of the pharmacies that sells bus passes, I ran inside to renew my monthly pass!! B ran to the pet store for kitten food (for his kitten) and to the bank (to get cash to pay his share of the internet bill). We came home and put our groceries away.
I put away my non-grocery items as well, and opened up the hair clips to wear for the day.
I got back to work on updating posts, but also got a little distracted by housework. I did a little tidying around my room, swept/swiftered my floor and took out my recycling and garbage. Garbage days are Sunday nights, so I usually take the recycling and garbage from my room after Sunday, about every other week. Garbage/recycling is one of the chores around the house. My chore is to vacuum the carpets, which I try to do at least every other week. Right now, the upstairs carpets are fairly good, but since the kitten's litter box is downstairs, I think I need to do it soon.
Then, I worked on ASDay posts again, and starting fixing my supper in the slow cooker. I made chicken with a pesto-cream cheese sauce, which I had with vegetable juice and rice. I usually put on these seasonings on my rice, and I'm pretty much out. Next time I'm near the Asian Market, I need to pick up some more. As I started up the ASDay IRC chatroom with the GimpGirl Community I made Apple Crisp for my Dungeons and Dragons group, who came over to play.
Before I played a quick session of DnD, I did a bit of work on my schoolwork, handing in an assignment due that day, and working on discussion questions. I also have an essay due next week.
Unfortunately, I couldn't get a photograph of my DnD group, but we had some fun. Afterwards, people left for home (one slept on the couch though, she was too tired to head home) and I got back to work on ASDay posts. Kathryn and I divided up the rest of the work, based on our strengths, and I managed to get completely caught up with the submission form list!
By that time, it was kinda late for me, who had gotten up at 6am and had work the next day, plus school to work on. Kathryn had Wednesdays off, so it was mutually agreed upon that she continue on while I went to bed. So I did.
Ta-Da! That was my day!
(Post does contain Trigger-Warnings for images of injuries, but images are under external link, so post has been deemed Safe)
I never did get to finishing and posting the two posts I had planned for Autistics Speaking Day. I was going to explore the link between poverty and disability, as well as take a look at how crisis lines are ableist (aka, why aren't there online crisis chat services, why aren't there mental health services that disabled people who find leaving their homes or picking up a phone to be a challenge?).
But it never happened. There was just a flood of posts coming in that between taking care of them (I read pretty much every single one) and doing my own daily tasks, I didn't have time to write my own!
Luckily, I had a plan in case this happened, and took photographs throughout the day. The ones I posted on Twitpic can be clicked on to see the full photo.
So, I bring you, My ASDay:
First, I started the day at the Sleep Clinic. I have severe sleep apnea and had stayed the night in order to get my CPAP pressure checked. Turns out, my pressure needed to be raised.
 |
| my room at the sleep clinic |
I woke up at 6am, and made my way home from the Clinic. My monthly bus pass had expired (new month), so I made a mental note to get it renewed. I'm on a Municipal Fee Assistance program, so I get a discount on monthly bus passes. I pay 46$ a month, instead of $60-something (the prices just went up, I used to pay $44).
I got home and noticed that I need to replace my bandaid. I had cut my finger at work. Here is a photo of it (which I'm not displaying here, for trigger warnings)
I also made sure to take my morning medications. I have two main meds that I take, one in the morning and one in the evening. The rest of my medications are as-needed meds, for things like acid reflux or when I need an extra boost to beat anxiety.
 |
| my morning meds |
I sat down and started working on getting updating the ASDay blog. So many posts!!
 |
| ASDay Headquarters no.1! |
At one point, I noticed a bit of a crash in the hall. A bit later, I went to investigate. The maintenance guy had been around, trying to fix the small window in our front door that had broke. He's been working on it for some time, and I think that it might be cheaper if the non-profit housing organization just replaced the door. It's an old door, original to the house, and it has quite a few cracks and leaks.
  |
| our front door and the glass for our front door |
 |
| Chatting with Dave aka Noyer on Skype |
Then my house-mate B asked whether I'd like to go grocery shopping with him. His case worker came to pick us up and took us to the grocery store. I got some new hair clips, because I am forever trying to find clips that won't fall out of my hair and I just got my hair cut. I also picked up some of the Halloween makeup glitter on sale, and a few treats. I mostly got things I needed, including things for my lunches to go to work.
 |
| my groceries, about $60, a tad over budget but I figure I can afford it with a new job! (stuff on the bottom rack are B's) |
Since we were near one of the pharmacies that sells bus passes, I ran inside to renew my monthly pass!! B ran to the pet store for kitten food (for his kitten) and to the bank (to get cash to pay his share of the internet bill). We came home and put our groceries away.
 |
| Between semi-obsessional food hoarding and donations from friends, I'm stocked for winter! |
I put away my non-grocery items as well, and opened up the hair clips to wear for the day.
 |
| Had bigger ones as a kid, I used to pretend they were alien monsters |
I got back to work on updating posts, but also got a little distracted by housework. I did a little tidying around my room, swept/swiftered my floor and took out my recycling and garbage. Garbage days are Sunday nights, so I usually take the recycling and garbage from my room after Sunday, about every other week. Garbage/recycling is one of the chores around the house. My chore is to vacuum the carpets, which I try to do at least every other week. Right now, the upstairs carpets are fairly good, but since the kitten's litter box is downstairs, I think I need to do it soon.
  |
| Sweeping and taking out recycling |
Then, I worked on ASDay posts again, and starting fixing my supper in the slow cooker. I made chicken with a pesto-cream cheese sauce, which I had with vegetable juice and rice. I usually put on these seasonings on my rice, and I'm pretty much out. Next time I'm near the Asian Market, I need to pick up some more. As I started up the ASDay IRC chatroom with the GimpGirl Community I made Apple Crisp for my Dungeons and Dragons group, who came over to play.
 |
| Remainder of DnD Apple Crisp |
Before I played a quick session of DnD, I did a bit of work on my schoolwork, handing in an assignment due that day, and working on discussion questions. I also have an essay due next week.
 |
| Coursework, really! |
Unfortunately, I couldn't get a photograph of my DnD group, but we had some fun. Afterwards, people left for home (one slept on the couch though, she was too tired to head home) and I got back to work on ASDay posts. Kathryn and I divided up the rest of the work, based on our strengths, and I managed to get completely caught up with the submission form list!
 |
| Caught up with posts! Yay! |
By that time, it was kinda late for me, who had gotten up at 6am and had work the next day, plus school to work on. Kathryn had Wednesdays off, so it was mutually agreed upon that she continue on while I went to bed. So I did.
 |
| my bed! Bedtime! |
Ta-Da! That was my day!
Powersuit: Autistic Self Portrait.
On her tumblr Powersuit, Karin Mossberg has shared some self portrait photographs for ASDay. Please see her original posts to view the excellent photographs.
Autistic FaceBook Comments
We had a couple of participants make comments on Facebook. I thought that we should make a post, just for them on the blog.
I
don't have a blog so I'll just post on here :D
I dont have a blog,
but I will just say..Yes I have autism. Sometimes high functioning
other times??? There are adults who grew up not knowing what was
Facebook Comments
Amy Ouellette
I
don't have a blog so I'll just post on here :D
I'm 23 and
have had Asperger's since I was five years old. I spent years
getting Occupational Therapy services when I was younger and Speech
Therapy services until I graduated from high school, which has
overall helped me in many ways. However, I also feel like sometimes
having gotten those therapies had only helped me to learn how to act
like a neurotypical when I know I'm not an NT and am never going to
be one.
My viewpoint on having AS, however, is mostly a
nuetral/positive one :) I have my good days and bad days just like
every other person. I feel like having AS has helped me be more
empathetic towards other people who feel like they're different from
typical people. I feel like my passion for advocacy would disappear
if I didn't have AS, which is what I don't want.
Also, since I can't have more than
1,000 characters in my wall post, my family and friends who know
about my disability have been supportive the entire time and am
grateful for them having faith in my abilities even when I don't
always believe in myself :)
Thanks for giving me and other people on the spectrum a chance to share :)
Thanks for giving me and other people on the spectrum a chance to share :)
Lorrie Koehler
I dont have a blog,
but I will just say..Yes I have autism. Sometimes high functioning
other times??? There are adults who grew up not knowing what was
so
different about them only knew they were different. I am one of them.
I
was diagnosed about a year ago. Glad I finally know and can just
be myself.
Physically I am forty something.........Mentality
?????? I guess it varies. Just wanted to speak on Autistics Speaking
Day.
Jo Qatana Adell
What I don't understand is why people who suddenly become affected by autism get so angry with me. Is it because I can speak for myself when their loved one can't/wont?
Glyn Steiner
I do not have a blog either. My word to others is this: Asperger's syndrome greatly affects my decision-making. And finally I have a mentality of a teenager.
Nadine Silber
I don't a have a blog so I will need to just post something short. So here it is "on one foot" so to speak - good self esteem is even more important than good social skills. Afford people dignity. Do what you enjoy. Be happy with who you are.
Diane MacNaughton
Let us Rejoice in our Autistic Voices and let everyone know it is Autistic speaking Day!!! And whoever we meet let us tell them of this great day!!! And that we are all different and can communicate in different and glorious ways.
CarolAnn Edscorn
New employee at work last night. Chatty chatting chattering at amazing speed. I asked for insight from a manager. Next time I go into work, using my auditory recall of topics (mostly past jobs & people SHE knew) I will have a list of topics of my OWN for sharing. Chatting is seldom sharing. But I think I can help this shift. This is a moment when that central coherence thing - attention to DETAILS - may help! Do people blather as a habit or as a result of fear and anxiety? The puzzle piece applies to us understanding neurotypicals as well as their understanding of us! Smile--it makes others wonder what you are up to! THANKS
Dàibhidh MacNiocail MacAindreais
i have done nothing for today. my life is in such a bloody mess that it's impossible to do anything. reason for this is the total lack of appropriate actual support that one gets in Finland was a foreigner with a disability: the Finnish system hates foreigners and hates the disabled, and if one is both - then life very soon gets to be a burden more than a joy.
John Greally
"I wanted my Johnny to grow up able to communicate for himself and to be independent of his parents. When he grew up he told me he did not want me and my husband running the local Autism Group while he was being "provided for" and his "best interests" taken care of by "those who know". I then realized that my task was not to have raised an independent communicator, but a crushed mute."
Wrapping up ASDay
It is 3:36 AM my time. Here November 1st is over, but we are still accepting ASDay posts. If you have something to submit today, tomorrow, next week, next month, please let us know.
If we've made any errors or you would like the way your post is displayed on our website changed, also let us know. When I ran across ASDay posts and I hadn't been informed on how the author wanted them shared, I simply linked them. I'd be willing to edit these posts to add excerpts of the post with the authors' consent.
Also, we'd like to how you feel about Autistics Speaking Day. We hope to continue making ASDay better year by year.
Kathryn
If we've made any errors or you would like the way your post is displayed on our website changed, also let us know. When I ran across ASDay posts and I hadn't been informed on how the author wanted them shared, I simply linked them. I'd be willing to edit these posts to add excerpts of the post with the authors' consent.
Also, we'd like to how you feel about Autistics Speaking Day. We hope to continue making ASDay better year by year.
Kathryn
A special thank you to Liz Ditz and everyone else at TPGA
You caught a lot of bloggers' posts that I wasn't aware of. Thank you for that. We would have accidentally left out several posts if you hadn't gathered them for us and you were crucial to ASDay's success both this year and last year. I can't thank you enough for that, and I hope you'll continue to be a part of ASDay.
Listen to the Silence
Autism Jabberwocky on ASDay. I disagree with the opinions of the author, since he's using old data that doesn't represent the autism spectrum as it's understood today and we have several people attending who identify as being severely autistic--some even lack verbal skills to varying degrees. (I have nonverbal episodes myself.) A friend pointed out to me that the author does not recognize the difference between speaking and communicating, and I would be inclined to agree with that. Nonverbal autistic people can often communicate very well with text-to-speech software, technology, and sign language.
But I think that it would be dishonest of me not to include a post just because I disagree with it. I also agree that we need to do more to include people who are severely disabled in this community, but I don't think that denying their existence within this very movement is going to help matters.
People using alternate communication methods who are partially verbal or nonverbal may find this triggering, and those who are easily disturbed by hints that their disabilities are not real may find it triggering as well.
But I think that it would be dishonest of me not to include a post just because I disagree with it. I also agree that we need to do more to include people who are severely disabled in this community, but I don't think that denying their existence within this very movement is going to help matters.
People using alternate communication methods who are partially verbal or nonverbal may find this triggering, and those who are easily disturbed by hints that their disabilities are not real may find it triggering as well.
Stephen Fry on ASDay
Some of you may be aware that the famous actor Stephen Fry tweeted about ASDay last night. This resulted in many more people becoming aware of our event and I want to take the opportunity to thank Mr. Fry for this (and for just existing, because Stephen Fry invented being awesome).
The post read:
Stephen Fry
Today is Autistics Speaking Day, let's hope that the world will listen: autisticsspeakingday.blogspot.com @autisticsSpeak #ASDay
By the way, if you are not familiar with Mr. Fry's work, please search YouTube for some samples of it.
The post read:
Stephen Fry
Today is Autistics Speaking Day, let's hope that the world will listen: autisticsspeakingday.blogspot.com @autisticsSpeak #ASDay
By the way, if you are not familiar with Mr. Fry's work, please search YouTube for some samples of it.
My life with Aspergers
Ian's video for the event, although I should probably clarify that Autistics Speaking Day is not related to Autism Speaks.
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