Why can’t we all get along?!?

I am 100% in agreement that the stigma and ableism perpetuated by groups and organizations like The Mighty are harmful to the Disability Community, because they are misrepresenting ableism as advocacy. There is much action afoot to have The Mighty consistently align their actions and ethics with their claim that they are supporting advocacy.

But this is the tip of the iceberg.

Within disabilities communities there is an enormous problem related to power with groups and individuals that claim to be working to advocate for or support Autistic people, very often (too often) without including their voices.

And part of the difficulty is that this imbalance of power perpetuates itself and insulates itself with what I can only imagine is a threatened or fear-based reaction.

Parent (and professional) voices tend to have more weight, more reach, more volume, and when they are asked to step aside, or consider the perspectives of #ActuallyAutistic people, or look deeply and see that their actions might actually be harming the people they want to support, their response is too frequently to act as though they are the ones being attacked, and silenced.

I have seen some parents shout down Autistic people and activists and tell them that they are mean and full of hate and too angry.

I have seen some parents, parent support groups, and organizations lash out in ways that ignore the message and eliminate the potential to learn and gain new understanding.

And then they tend to dismiss those activists and their words as too full of hate, radical…

And toss around phrases like, “We’re all entitled to our opinions.”

Or, “Why can’t we all just get along?!?”

Or, “You are creating divisions in the autism community, we need to find the middle ground.”

These words too often seem to be statements that actually translate to… “you need to capitulate to my needs/stance/opinion/comfort because I just said these nice compromising words and I am the one with all the power.”

Why can't we get along 2

Image of frizzy-haired woman with sky and water background. Text reads: “Why can’t we get along” and “everyone is entitled to their opinion” too often seem to be statements that actually translate to… “you need to capitulate to my needs/stance/opinion/comfort because I just said these nice compromising words and I am the one with all the power.” ~ Leah Kelley

And the sad thing is, I believe this response is in part because they are afraid. But these parents, who I suppose have found community and the illusion of support in these arenas, are soaking in a mire that perpetuates their fear, and continues to wash them in the story of disability as hardship and tragedy.

Perhaps they are afraid that if they stepped away from this – they would find themselves struggling… alone…

I have to say that has been the EXACT opposite of my experience – I am so fortunate to have stepped away from the predominant message of tragedy that is the mainstream ableist response to disability.

I have learned so much from my amazing connections with Autistic adults and I am a better parent and educator because of it. I have community. It is a community of support and understanding, and it is full of love and acceptance. This is the community that supports me in understanding and accepting my son as perfectly being himself in this very moment, and then we support development from there.

The reality is, that parents and educators and professionals have the opportunity to play an important role in ensuring that the voices and perspectives of Autistic people are heard and respected, particularly when we are willing to recognize our privilege in being heard as the loudest voices and also acknowledge that disabled people with lived experience are the REAL experts.

In this post from 2013 I was considering my own privilege and opportunities to make space for others (Easy Silence Part 2: The Yin and Yang of Privilege and Empowerment).

I shared: “That sense of privilege has a shadow… and the shadow is the assumption that I have the right to speak up – to say my piece – to be heard… and I am coming to realize that this attitude may actually silence or dilute or diminish the message of others.

I am trying to be aware of this so that I do not assume the same privilege when I am interacting with Autistic adults. If I am working to empower the voices of others – I may need to be willing to make my own subordinate. If I am sensitive to this…  I may feel silenced… I may need to silence myself.

This feels uncomfortable at times… I am learning to make peace with this discomfort. It may feel like I am being silenced by those I am trying to support… and it may even feel like there is an irony to this.

But this is not about me.”

There is no middle ground here: all people deserve respect.

The middle ground’ is a lie designed to silence those who will not work to keep the status quo: there can be no compromise when it comes to respect and human rights.

The Middle Ground is a Lie

Image of cloudy sky. Text reads: “‘The middle ground’ is a lie designed to silence those who will not work to keep the status quo: there can be no compromise when it comes to respect and human rights.” Leah Kelley

There is no divide when parents are willing to support the civil and human rights of the disabled adults that our sons and daughters will someday become.

I invite you to lean in…

And now I will wind up with this signal boost in hopes you will consider reading and sharing these fabulous articles that have been written about the problems with The Mighty:

The Mighty: Apologize For The Harm You Do to the Disability Community! Please sign and share this petition by PACLA (Parenting Autistic Children with Love and Acceptance)

Why I’m not in love with The Mighty by 21 + 21 + 21 = ? (May 2015)

Why I Dislike The Mighty & Better Alternatives for Parents by Lei Wiley-Mydske

Meltdown Bingo: Autistic Edition (aka, a meltdown from the inside) by S. M. Neumeier

Neurodiversity Vs “the Mighty” by Michelle Sutton

A Letter to the Editor of The Mighty by Kimberly Faith

About The Mighty – my thoughts as a contributor by Carly Findlay

Two Ethical Futures for The Mighty by David Perry

Thoughts on #CrippingTheMighty by The Crippled Scholar

CAN U NOT: A Twitter Ode From Me To The Mighty by Emma Pretzel

Open letter to The Mighty by Un-Boxed Brain

The Mighty thinks they want a conversation by Radical Neurodivergence Speaking

Why I’ve Had it With “The Mighty” by Meriah Nichols (November 2015)

Run down of #CrippingTheMighty by Savannah Logsdon-Breakstone

My Response to an apology from The Mighty by Holly

An Open Letter to The Mighty by Cara Liebowitz

#CrippingTheMighty by Kit of Paginated Thoughts

Mentors and allies and #autism by soniaboue

A Christmas Truce by Cara of A Fool on the Hill

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2015)

Posted in ableism, acceptance, Activist, Advocacy, Autism, Autistic, Disability, listening, Neurodiversity | Tagged , , , , , | 13 Comments

Meltdowns and the Lens of Ableism

Meltdowns – from the other side…

Many, many months back Colin Bowman and I began a conversation in the comments section of one of my posts (Yours, Mine and Ours: Autism, Self-Advocacy and Setting Limits). This interaction has been resonating with me, and this post has been inspired by that conversation.

This is such important understanding:

“Avoiding meltdowns, and everything that goes with them, has merit and yields dividends. However risk-aversion carries its own costs. Perhaps more crucially, it may be (and I think it so) that an autistically developing person cannot develop as an individual, unless and until they become able to pass through meltdowns, and perhaps routinely. I think the nub of things is how we manage meltdowns, how we pass through them, what we sift and mine from them.”                   ~ Colin Bowman

Considering current thinking around meltdowns:

What I have often read and what seems to be often put forth as a pretty readily accessible and accepted understanding is that a meltdown should be differentiated from a tantrum. Unlike a tantrum, a meltdown is not a move for power or method for an individual to try to get one’s way – rather it has been framed as something that is not a choice and that a meltdown should be viewed as communication – just as all behaviour is communication.

The logical extrapolation from this assertion is that the meltdown is the communication of a need, or something overwhelming in the environment, or it is the expression of the communication of dissent. From this then, it follows that those working to support an individual who sometimes experiences a meltdown response, should be working to make the environment the best match for the individual in order to minimize the likelihood of a meltdown occurrence.

This makes sense, and a big part of the work so many of us are trying to do is to build understanding so that we can undertake the transformative process to shift the world to be a more supportive and better match for those with social cognitive or sensory processing differences.

The impact of Colin’s perspective:

Since my conversation with Colin, I have been thinking that this interpretation and response to a meltdown is lacking – not wrong – but just not considering another potential dimension or possible perspective.

There is value in to questioning our assumptions to see if there is sometimes another way of looking at or framing meltdowns, as Colin suggests… because I suspect that there is an opportunity to deepen our understanding.

For the purposes of this post I would like to consider and suggest that a meltdown may not always be a behaviour communicating a need, or something lacking or overwhelming in the environment or a situation, or an act of dissent. Although this makes sense, and I am not in any way suggesting a denial of this understanding of meltdowns, there exists the possibility that seeing a meltdown solely from this perspective may be damaging to the authentic and natural development of Autistic processing.  I am wondering too, if there could be an element of othering in this common interpretation simply because it may be too narrowly defined for some circumstances.

What if, just for a moment, we didn’t view some meltdowns as a response to be avoided at all costs?

What if it was framed instead through the lens of an emotional response?

Would we understand a meltdown differently and support people differently through the melt if we saw it this way instead of as behaviour and communication?

Consider Colin’s point again:

“Avoiding meltdowns, and everything that goes with them, has merit and yields dividends. However risk-aversion carries its own costs. Perhaps more crucially, it may be (and I think it so) that an autistically developing person cannot develop as an individual, unless and until they become able to pass through meltdowns, and perhaps routinely. I think the nub of things is how we manage meltdowns, how we pass through them, what we sift and mine from them.”            

I responded to Colin that I might know a little of that feeling – the cleansing of a breakdown and the sense of a fresh start of the aftermath. I have felt that like the promise of a shaft of light breaking through after a storm… there is such clarity and the rain-soaked world feels washed clean and is transformed to sparkly beauty.

I get that this sounds a little schmaltzy – but I do feel cleansed like that after a really intense emotional release and am able to move on in a new way. I know this is not necessarily the same as I am not Autistic, but I am trying to understand through my own experience so I have something to hang this on.

But what if it is the same?

What if when I am overwhelmed I am able to be cleansed by this really good cry or emotional release – but at the same time an Autistic individual is denied this – because that same good cry is labeled a meltdown, and it is seen as a [mis]behaviour or response to be avoided at all costs??

How would I feel when a good cry happens – if it were seen as a failure??  I am concerned that this may be the message that is given to an Autistic person when a meltdown is framed as something that is negative: a failure of the support system to effectively support and/or the failure/fault of the Autistic individual to effectively set limits or self-regulate or self-manage their emotional state.

Along with this – when emergence happens at the other side as an Autistic person works through the meltdown – if the good cry is framed solely through the lens of failure, what lies there may not be that wonderful cleansed feeling of a new start, combined with a shedding of weight and a deep hard-fought release of stress and pain – but… rather… only… shame.

When discussing her experience about The Pain of Meltdowns, Laura Nagle shared:

“…To meltdown is to be broken. The person melting knows it, feels it, feels broken. To be in meltdown is to ride an out of control aircraft plummeting to the ground and with controls not responding, aflame, reality coming up towards one at an alarming rate: and the aircraft is one’s self! To be broken does not feel good at all. To be autistic and out of control; out of your own control; when control is so important to us and so tenuous; is terrible! The melted person did not want to melt!”

and

“…and then you melt. And you feel awful because the melt feels awful in ways that I cannot begin to describe. and you feel awful because you know what awaits you when you return to the real world. What awaits? Bad feelings from everyone around you, and the foundation for the next melt. Then the parent blogs about how awful the meltdown was; if only that parent could know.”

Consider the contrast here…

When I breakdown emotionally, I have finally given in: my limits were reached, and I can say, “I am okay now, I just needed a good cry.” I am ready to build back up. I never feel shame after I have had a good cry – this is even evidenced in my syntax.

Look how easily I can call this a good cry.

I don’t feel judged – I feel relief.

Unwinding ableism from the meltdown…

What is emerging then is a nuanced wondering about what might be the consequences for the emotional development of an Autisic person if we only see a meltdown as negative and undesirable behaviour that is to be avoided. We may be disallowing or blocking the cleanse and processing that moves us beyond the trigger or the frustration.

Further, what if every intensely emotional response is viewed as a meltdown for an Autistic person or by an Autistic person themselves, and it is only seen as an indication of unmet need – rather than an expression of intense experience. If that is the case, we may be denying experience and a very valid expression of authentic autistic processing.

Melting, the good cry, and welcoming the emotional process…

I know when I have had an intense emotional episode – for me it is most often crying – afterward I am different – it is like the world is a little more manageable and I have been cleansed by my storm…

If I take this further,  I can see that I need to work to support H (and others) through this so that he is honoured for his process, and is able to see himself as capable of navigating his way through the storm.

So I am having these thoughts about the meltdown as a potentially important part of processing. I observe that for H his emotions appear to be very intense. If he cannot occasionally meltdown, is he then denied the full range of experience to effectively process his emotions as Autistic person?

Non Autistic people are not denied the opportunity to experience intense emotion and process it however it is best for them…

An intense emotional response (AKA the good cry) doesn’t seem to get labeled and talked about the same way…

If a meltdown is viewed as an authentic and important part of processing emotion, then it seems that we need to be closely examining the messages we send regarding this process and explore opportunities for Autistic people to feel confident in their ability and skills to navigate this intensity and emerge on the other side of the storm.

So I am suggesting we look for opportunities to slightly reframe meltdowns. Of course it is good to adapt the environment to reduce the stressors that will trigger a meltdown, but I want to consider that there may be an important function to the melt that is a part of processing. It is worth considering that there may be times when the meltdown should not necessarily be avoided – if we understand that it is an authentic part of Autistic processing. So much of the focus so often seems to be around avoiding the melt – and then too often if  it is not avoided, it is seen as misbehaviour.

Supporting an individual through a meltdown is important: to be there to support and to help them process when they come out on the other side. There is learning and development that can happen there… in the ability to handle it and move through it.

There are opportunities here.

As parents we can run risk of modelling for our children that we never lose it…

Or… we can tell them we understand and that it is hard. You melt – and sometimes I have a similar experience… (and yes – I know it is not quite the same – but it may be more the same than it is different). There is an opportunity to share after my own emotional outpouring, I can let my son know that I feel may feel badly afterward (if I was hurtful to myself or others) or that I may feel better – but that either way, it is over and done and the important thing is that there is always another chance. I can encourage him and give him the message that it is good to let all those feelings out.

I can let my son see my fallibility – and share my understanding that intense feelings can be challenging. I can model that I can work through them. I can share that there may be some very important processing that goes on in a when experiencing intense emotions.

I give my son the message that it is safe to experience that intensity – that it will not swallow him – and that there is an emergence on the other side. I can support him through it – to the other side – as process: “You are feeling a lot of things right now… those feelings can be very strong. It is okay – you will be okay… I am here for you…”

I can reassure him that there is some cleansing that happen in that state and clarity that can be found afterward.

I think we may perhaps be too quick to judge a melt-down as something to be avoided – rather than an authentic response to a situation that needs to be processed in a more organic whole body way. Supporting my child through this – and also sharing that I sometimes struggle – will only help him to see that it is okay to have difficult times and to feel things deeply and to not be perfect (whatever that might be?).

And if I can honour my son through the process of the melt and have him able to emerge on the other side without a whole shit-load of shame – then he will be more able to authentically honour his own process and learn skills within that process. A melt can be scary – but if it is not layered up with so much shame or is not encountered along with so much accompanying fear – then I believe the process might be very different indeed.

I want my son to grow into a man who can process his emotions in a healthy way. I want him to have skills of resiliency and confidence in his ability to navigate his the intensity of his emotions. I don’t think this will develop in isolation – so I hope to support him in experiencing the full range of his emotional life – in a way that is authentic for him, and to know that he is not emotionally shut down or closed – but is safe in feeling as deeply as I know he does.

A final note:  Thank you, Colin. Your comments and communication always seem to have me perched on the very edge of my understanding – but I am ever so grateful for your gentle push of my capacity to see the complexities inherent in supporting others and in honouring their natural and native autistic capacity. I very much appreciate Colin, and Laura, and the many other Autistic people who share their experiences and insights with such generosity.

Processing emotions

Related posts:

http://sometimesmagical.wordpress.com/2013/10/26/supporting-a-loved-one-through-ptsd-or-panic-attacks/

http://www.thejennyevolution.com/give-your-child-the-tools-to-manage-their-own-meltdowns/

http://musingsofanaspie.com/2012/12/13/anatomy-of-a-meltdown/ (refers to shame – and Alex B in comments does as well…)

http://anautisticbirdsings.blogspot.ca/2014/06/human-frailty-inside-and-outside-of.html

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2014/15)

Posted in ableism, acceptance, Autism, Behaviour, Communicate, limits, Resiliency, Shame, support | Tagged , , , , , , , , , , | 14 Comments

Kermit the Frog on Neurodiversity and Being Green

Hi ho, Kermit the Frog here.

Today I won’t tell you a little bit about Neurodiversity, and different kinds of brains, and Autistic people.
Autistic people want to be a part of the conversation.
They want to be included!
But Autistic people don’t need me to talk for them…

imagesSo instead… today I’d like to tell you a little bit about the colour green.

Do you know what’s green?
Well… I am, for one thing.
You see some frogs are green, and I’m a frog.

And I happen to be the kind of frog that is green.

And that means that I’m green….

You see how that works…

And that also means I can talk about what it is like to be green – because I am a green frog and I can speak for myself…

latestImages of Kermit retrieved from http://disney.wikia.com

You can hear me sing an wonderful song about being green here. Yaaaaaaaaaaaaaaaay!!!

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in ableism, acceptance, Advocacy, Autism, Autistic, Educator, inclusion, Kermit the Frog, Neurodiversity | Tagged , , , , , , , , , , | 2 Comments

H: ‘Not an Impostor’

H and I recently co presented as a part of the training for the summer staff of our local Community Living/Inclusion organization.  This was a really fabulous experience for a number of reasons.

The openness of the staff to considering the ideas and perspectives being expressed was obvious, and very much appreciated.

For me it is particularly important to be able to feature H’s experience and perspective, not only because of my commitment to the idea of ‘nothing about us without us’ (and the specific commitment to this I have made regarding my presentations), and the impact this lived experience has in expanding the understanding for others, but also because it empowers my son.

Presenting is such a powerful way for this young man to feel he has some agency and can take an active role in combating negative stigma. The role this has in supporting his healthy sense of self is critical to cultivating his advocacy skills as he transitions to adulthood. He is learning that his voice and perspective have value and matter.

As a parent, I also feel it is my responsibility to look for opportunities to encourage and support H in rejecting negative stigma. I want my son to stand strong against organizations and messages that work to tear him down, or shame him because of his neurology. If the negative messages about Autism were not so widespread, I might be inclined to shield him from such things, but the idea that Autism is a disease to be cured, or eradicated, and that Autistic people are tragedies and burdens, is so pervasive that this does not seem to be a reasonable option.

I shared this in our presentation, and I appreciated the response of the participants, particularly since my son is involved with this wonderful community based organization. I understood that for some, this might have been the first time they had heard about the problematic practices of organizations like Autism Speaks. I am pleased that they will now be in a position to look more deeply into this – and I shared the Boycott Autism Speaks site (http://www.boycottautismspeaks.com/), so that they are able to access information if they are curious to learn more.

I am encouraged that disdain toward Autism Speaks is becoming a mainstream response, as people who care about social justice and human rights become more educated about their practices. I intend to continue to work to educate others on the damage that this organization is doing with their unique combination of fear rhetoric, and a lack of inclusion and a silencing of Autistic people.

And I am impressed with our community based Community Living organization and their committment to inclusion and acceptance, which is evidenced in their desire to include H in their staff training.

H was asked what was important and why he liked participating with Community Living activities.

He responded without hesitation: “I feel accepted!”

And then… at the end of the day, Craig asked H how the presentation had gone.

And H had the best response of all:

“It was great! They didn’t just hear an impostor’s words. They found a person who is Autistic expressing themselves!”

Image of smiling relaxed looking H sitting cross-legged on a stump in the woods. Text reads:

Image of smiling relaxed looking H sitting cross-legged on a stump in the woods. Text reads: ” ‘It was great! They didn’t just hear an impostor’s words. They found a person who is Autistic expressing themselves!’ H” Watermarked: Thirty Days of Autism: Leah Kelley

30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

©Leah Kelley, Thirty Days of Autism (2015)

Posted in ableism, Activist, advocate, Autism, Autistic, Boycott Autism Speaks | Tagged , , , , , , , , , , , , , | 6 Comments

The Inclusive Giraffe Party: Epilepsy and Accommodation

Kassiane teaching the Giraffes about Photo Senstive EpilepsyI brought my giraffe puppets to the TASH Conference in Portland, Oregon…  and then my friends and I made this!

Link: The Inclusive Giraffe Party – Video Transcription

Kassiane Sibley: Kassiane Sibley
Giraffe(s) Puppeteer: Leah Kelley
Camera: Lei Wiley-Mydske
Video Transcription: Jennifer Beierle

“An invitation is not inclusion. I don’t understand why people think that’s all that they have to do then get upset when the disabled person can’t do the thing because nobody cares enough to help create an environment that is actually welcoming and inclusive. Access, accommodations and inclusion are not favors extended to the disabled person and when you treat them like they are, YOU ARE DOING IT WRONG.”    Lei Wiley-Mydske

Related Posts by Kassiane are linked below:

What epilepsy is.
Things I cannot do–because I’m epileptic
I shouldn’t have to beg
Partial WHAT?

No Flash Printable Sign

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in Autism, Autistic, Collective Responsibility, Disability, inclusion, Neurodiversity, TASH | Tagged , , , , , , , , , , , , , , , | 3 Comments

What the Vulture Calls Unity: #BoycottAutismSpeaks

This last week marked the release of Steve Silberman’s much awaited book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, as well as the publication of his Op-Ed piece in the Los Angeles Times, titled Autism Speaks needs to do a lot more listening.

In the last few days there has been a backlash from Autism Speaks, which I surmise might be because Steve Silberman more widely known and is less easily dismissed as a part of the ‘radical fringe’, and thus a bit more of a liability to their credibility.

You can catch a bit of this action (and reaction) on Ed Asner’s fb page, where he defended Autism Speaks and erroneously asserted that Silberman “… took the hyperbole of the ‪#‎boycottautismspeaks‬ group without actually researching what Autism Speaks does.”

Asner also added:

“Silberman asks readers to imagine an all white NAACP making a preposterous comparison to the executives and board of Autism Speaks. Many of the board members and executives of Autism Speaks have children on the spectrum. They are parents. Parents who, like me, want to see their children and adults living with autism have the best chance at a life they richly deserve. While I agree that it is time for an individual with autism to be on the board, this comparison is misleading at best.

I am a parent that has been helped by Autism Speaks and I believe that anyone with a horse in the autism race has been as well.”

(I have included only a part of Asner’s lengthy post to make a point. Visit his fb page as linked above to check it out in its entirety.)

Autistic activist, writer, and Ed Wiley Autism Acceptance Library founder, Lei Wiley Mydske, responded:

Boycott Autism Speaks is invested in disability rights and justice. Our rights and humanity are not “hyperbole”. But way to completely dismiss Autistic disability activists and our legitimate concerns and grievances with an organization that MANY Autistic people consider a hate group.

Boycott Autism Speaks is a grassroots movement made up of #actuallyautistic people, our families, parents and friends who want an end to the hateful rhetoric, fear mongering, irresponsible fundraising and toxic “support” of Autism Speaks.

I think it is telling that Autistic people have been protesting Autism Speaks brand of “advocacy” for just as many years as they’ve been around and we have been met with silence. A non-Autistic person amplifies our voices and concerns with Autism Speaks, and suddenly, they feel like they should respond. Why can’t they listen when Autistic people are speaking?????? #boycottautismspeaks #nothingaboutuswithoutus

Autistic activist and poet, Amy Sequenzia, also responded:

People with a “horse” in the autism race? Wouldn’t that mean Autistics? I mean, our opinions about our lives do matter, right?

Sure, celebrities show up, it must be good (rolling my Autistic eyes)

Do you know who A$ has not helped? Autistics. That should suffice. Oh, and I am blocked from their social media, because of course, why would my word about who I am have any value (rolling eyes again)

MSSNG. Oh boy! Don’t you see how terrible this sounds to us? We are not missing! A$ wish we were though.

And “Light it Up The Blues” should be the correct name for it. It does do that to Actually Autistic people

What you list as “helped” is what we don’t need: tool kit full of dread about the future; “treatments” that seek to change who we are; segregated “communities”, oh, yeah, A$ lobby against having Autistics during the debate on the Autism CARES Act.

Yes, it helped parents. Which does not mean it helps us. Quite the contrary. Let’s not forget that when a parent murders their Autistic child, A$ is quick to say that the child was soooo severe and the parent was soon overwhelmed.

Let’s check the financial reports, shall we? More money for catering than for family support.

Boycott Autism Speaks does have the information. We found it on the A$ website and we live the consequences of A$ hate.

And before you say “you are not my child” type of thing, go check who I am. I am “that” Autistic A$ loves to say is a burden.”

And Autistic activist and scholar, Dani Alexis Ryskamp added:

“The fact that Autism Speaks has (non-autistic) parents of autistic kids on their board, but no actually-autistic adults, emphasizes Boycott Autism Speaks’ point rather than undermining it. Autism Speaks is a charity run by and for the benefit of those non-autistic parents who remain unwilling to embrace their autistic children as full human beings, autism and all.

This is the fundamental error from which all Autism Speaks’ other mistakes spring. Until Autism Speaks corrects this error, it will never work in the interests of autistic people – only in the interests of those who would prefer autistics did not exist.”

In typical ignoring-criticism and shifting-the-argument fashion, someone took Asner’s bait and asked:Could it be that Mr. Silberman needs to do a little more research on Autism Speaks?”

Really?!? Could it be that Autism Speaks should not be silencing the voices and perspectives of Autistic people, and promoting and spreading the negative stigma that makes their lives more difficult??

(Hint: Yes… the answer is YES!)

Ironically, Asner’s post and the lack of response to Autistic people who commented there is a stark and sadly perfect illustration of exactly the problem with the organization he is working to defend.

Hold this all with you… as a microcosm of all things Autistic Speaks, as you now consider that this week AS has responded to criticism with a “Call for Unity” – a political tactic that is a grossly transparent attempt to shift the attention from accountability to even more effectively silencing and ignoring Autistic people.

Autistic educator, scholar, and aikido teacher, Nick Walker, had this to say about Autism Speaks‘ call for “unity.”

“What the vulture calls unity, the giraffe calls getting eaten.”

I think this pretty much sums it up… and so some doodling happened…

Nick Walker on Unity - Illustration: L. Kelley

Image: a red square with red tinted pencil drawing of a flying vulture (upper left), clutching to the word unity, made of branches with leaves growing out of it. Lower right is the head and shoulders of a giraffe that has an unimpressed look of disgust or worry, and signed L.Kelley ’15. Text Reads: “What the vulture calls unity, the giraffe calles getting eaten.” Nick Walker. (Watermarked http://www.boycottautismspeaks.com and http://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance )

 

I will continue to ‪#‎BoycottAutismSpeaks‬ It is impossible to have “unity” with a group that calls my Autistic friends and family members tragedies and burdens!

Please check out these petitions and links to find out more and take action to support the Boycott Autism Speaks movement:

• Website: boycottautismspeaks.com

• On facebook: Boycott Autism Speaks

• On Twitter: @Boycott_AS (check out hashtag #BoycottAutismSpeaks)

• Petition: To the Corporate Sponsors of Autism Speaks

• Petition: to Sesame Street Reconsider Partnership with Autism Speaks

If you and your organization are interested in supporting projects that are fighting stigma and actually making the world better for Autistic people… please read more about Lei’s Library ❤️ or The Autism Women’s Network (AWN) or look to support local initiatives within your community.

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in ableism, acceptance, Autism, autism stigma, Autistic, Boycott Autism Speaks, Neurodiversity, Silence | Tagged , , , , , , , , , , , , , , , , , | 7 Comments

Packing and Unpacking: Distance Education and the Social Model of Disability

I am finally packed.
Gah – I am so terrible at packing…
It taxes my executive function because… anticipating… and predicting… and sorting… and organizing… and planning… and DECISIONS!!

So now that this is done, I will tell you about my next adventure because there are some potentially amazing opportunities on a global level and I am excited by the possibilities.

The Commonwealth of Learning, an organization created by Commonwealth nations to support an international educational initiative for the development and sharing of Distributed Learning (distance ed/open learning) resources and technologies, has invited me to present at their conference in Belize: Innovative Schooling: Transforming Pedagogy, Increasing Access, to Ensure Learning.

And I am leaving today…

I will be presenting with Education Professor, Dr. Maxine McKay, from the University of Belize, whom I met in 2013 when she and her colleagues visited the school where I work, on the outskirts of Vancouver, BC.  At the time of her visit, Belize was opening its first Open Learning school, and we took the opportunity to discuss the possibilities that exist within DL (Distributed Learning) to support students with disabilities.

Dr. McKay and I will each have short time to present as a part of a panel, followed by a period for questions and discussion, so I am trying to figure out how to make the most of this time.

I am mindful that this conference is not just about DL/Open Learning in Belize or other developing countries, but that it is also an opportunity to influence ideas around disability for those in positions to make decisions that affect educational policy. I am humbled at the opportunity to be a part of this conference, one that promises to examine the intersections of disability and poverty and access to education in developing countries and beyond.

The Commonwealth of Learning’s mandate is to provide access to education for students regardless of race/sex/economic situation, and it is exciting that they are interested in considering how DL/Open Learning can create access for students with disabilities. I know that other presenters will have the technology and resources aspects covered; I understand that I have been invited because they want to ensure they also continue to focus on the students, and they think I can talk about that with heart and passion…

So I am leaning toward discussing the Social Model of Disability vs the Medical Model, and how DL/Open Learning can function as a bit of an end-run around the barriers that might exist for students with disabilities, in that it can give them access to education where inclusion is not widely practiced or implemented. This is a beautiful opportunity to look at creating structuring systems and building understanding and capacity in order to support students with diverse learning needs.

More specifically I can talk about how distributed learning (distance ed/open learning) can be a good match for students – and why – and what our schools and teachers and systems and society can do by building their understanding and capacity to be open to other ways of seeing and doing and experiencing things, and the multiple and diverse ways to represent and measure learning.

And we need educators to learn from the voices and perspectives of disabled people who are the real experts… There is a lot of stigma and untruth out there… and it hurts…

And that it is the attitude of acceptance of the individual in the very moment – exactly as they are – combined with presuming competence – that will create the most opportunities for diverse learners…

So I am stepping back from specifics in some ways and speaking more philosophically to work on strategies that build capacity and understanding and will encourage educators to draw on this information like the blogs in my blogroll (Pssst over there to the right —> ) to inform their practice…

I also want to discuss that just because we have the technology – or the programs and resources… it doesn’t mean we will meet the needs of diverse learners; that takes building capacity in our educators, and we need to build understanding about presuming competence and welcoming dissent and so many other things…

And, too… the home facilitator/parents need to be supported in unwinding the pathologized aspects of the diagnostic process, because Developmental Disabilities, such as Autism, are generally diagnosed by comparing a child to what is commonly expected and looking closely at the things that are not  developing in ways that are typically expected. The diagnostic process is deficit based, and in my experience, parents need support and direction in breaking away from this perspective.

We need educators and parents to understand that they are being sold a bill of goods with the negative rhetoric around disability, and beyond this – as a society – we need to realize and recognize that disability is not a tragedy but a natural part of the full range of human experience. People with disabilities are valuable and should be honoured, respected, and INCLUDED, and DL/Open Learning educators are positioned in a way to make this happen!

Autstic Sun - A painting by H

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism (2015)

 

 

Posted in acceptance, Autism, Disability, Distance Education, Distributed Learning, diversity, Educator, executive function, inclusion, Special Education | Tagged , , , , | 4 Comments

The Singing Bowl and making curtains… and LOVE!

Second half of summer…
Wednesday…
We’ve read some, puttered some…

And now I am clearing off a bit of the diningroom table to set up my sewing machine…

Our dining room table is family central.

Craig and H do H’s distance ed work here… I set up by computer here… Today I am moving a few things to set up my sewing machine.

Yes… I have a sewing machine.
I can sew stuff…
well, sort of…

I can’t read a pattern – but I can figure out how to put stuff together. Like H, I am spatially pretty adept and now I am setting out to make curtains for The Beast (AKA The Millenium Falcon).

We are going for the gold… and orange, so to speak, as there is simply no point in fighting The Beast’s 1984 colour scheme. I am developing a new appreciation for Harvest Gold, and all sorts shades of orange… and I’ve been overjoyed with a couple of lovely melamine bits and other kitschy finds in these shades.

I have a mix of material I have found in these colours… and I have measured and cut… and am ready to begin, and yet, there is so much prep to do.

I hate prep… it taxes my executive function.

As I was moving about the dining-room stuff, and sighing with the realization that I would also have to change the thread in the machine – including the bobbin – I set my eyes upon Craig’s Tibetan singing bowl… (he got it for a gig with the Vancouver Symphony – but I have since commandeered it). I paused to give myself a couple of calming moments with the lovely resonating sounds that I can hear… and feel… and entirely control.

At this point Craig noted: “Some people say that when the tone changes or the sound grows louder – that indicates spirits passing by…”

H smirked: “You mean Booze?? In the air???”

We laughed

I responded: “Oh, frickity frack! What are we going to do with you…?!?”

Without missing a beat H declared: “Love me!”

“Yes!!”

Okay then… back to work… Making curtains for the Beast!

30 Days of Autism - New Curtains for the BeastIn retrospect, I am not sure what renewed me more – the singing bowl or H’s comment – but either way, I’ve completed a bit more of this project, and we are loving our wacky, wild and wonderful new curtains!

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

©Leah Kelley, Thirty Days of Autism (2013/15)   

Posted in acceptance, Autism, Autistic, executive function | Tagged , , , , , , , , , , | Leave a comment

H on Autistic Pride

H on Autistic Pride: “Be your own true self!”

Photos of H in a Novelty/Costume shop wearing a rainbow unicorn mask and an Adventure Time t-shirt. Text reads: Autistic Pride Day "Be your own true self" H (Water marked Thirty Days of Autism)

Photo of H in a Novelty/Costume shop wearing a rainbow unicorn mask and an Adventure Time t-shirt. Text reads: Autistic Pride “Be your own true self” H (Water marked Thirty Days of Autism)

 This image is a part of the 6th Annual Autistic Artistic Carnival… be sure to check out the other submissions on Jason Ross’ blog!

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in Autistic, Autistic Pride Day | Tagged , , , , , | Leave a comment

“Code” a Poem for H by N.I. Nicholson

A few seasons later… and I am still left breathless by the beauty of these words and images.

Code
By N.I. Nicholson

Dear H: for those of us to whom words
sometimes do not easily run, saunter, or even
amble: we speak in code. We think in code. We
construct our languages painstakingly
like little Tolkiens, separated by time, distance, and space:
but the Hobbits and the Elves ain’t got
nothing on us. We have the dexterity
of pictures, objects, or even
moving film to send messages to world,

or even to our own selves. Like
ladybugs made of burnished cinnabar
inlaid with little obsidian gems, loud like volcanoes,
each careful crafted by a God hand
and set loose to fly away home: these
little three-dimensional living hieroglyphics
exist so that your neighbor Mrs. L
can hold her place in time and never collapse
or fold up inside forgetful darkness. Or like

little goldfish that represent your great grandmother
in your dialect: I see them, made of amber,
or made out of mother-of-pearl and then
lacquered in the gold resin usually reserved for
rebuilding the broken bodies of cracked-apart
teacups. And after the repairs, those teacups
are bequeathed with a new set of gilt, gleaming veins
in their skins.

I have heard some say that we are broken.
Busted up toys.
Dolls that do not speak when their strings are pulled
or even worse, that wax loquacious like
caffeinated rivers preaching single-subject gospels
to the world. Little toy cars that only drive
to a single destination. Action figures content to
line up their weapons according to size and function
when no one is looking. But no one ever looked closely
to see the veins of gold in our skins
that hold us together: I found mine when I was
thirty-four years old. And you, you are a
superconductor, transmitting plans for mechanical arms
made from K’nex and Lego iPod holders
from brain to fingers, manifesting
solid creations from invisibility. Just like
I manifest poems from the unseen code books
in my brain.

It is at best, ignorance, or at worst, arrogance,
to assume that a language unknown
or unable to be decoded
communicates or means nothing.
Maybe you have heard of the Navajo code talkers
of World War II: their modified dialect of code
was so sophisticated that even a captured Navajo soldier
who didn’t know the code told his interrogators
that the transmissions he heard sounded like
nonsense. Your symbols, my moving picture poems,
and the language of every other autistic,
are electrified with all kinds of color, and so
I offer a toast to you, my young friend:
let us keep speaking in code as long
as we walk this Earth. Our languages are not mistakes,
or broken syllables, or to be dismissed as mere
unintelligible nonsense. They simply need our translations
to be understood.

Written 12/14/12
© 2012. N.I. Nicholson. All Rights Reserved.
(Reprinted with permission)
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This poem, originally published at Raven’s Wing Poetry, was inspired by a post at Thirty Days of Autism in which the author speaks of empathy and how her son uses physical objects to represent people in his life who have passed away, so that he may remember them. Because the nature of autism and how it manifests can be so specific to each person, it made me think of how each of us can have our own codes — or languages, if you will — to express ourselves. The post struck me so much that I felt the need to write this poem.  ~ N.I. Nicholson

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Dear N.I. Nicholson,

H and I are both honoured by your poem, Code. I read it to him tonight. He thought it was beautiful and gave you a rather unpoetic-14-year-old thumbs-up and the full-faced squinty smile that silently speaks his pride and appreciation. He stood taller at the final lines… and was clearly moved to feel so understood, and further, he was amazed at the mystery that you understood him with such depth.

Thank you for this…
for reaching out…
for making the connection…
and for your gift of words that resonate so powerfully…

I will carry this with me…
as will H
this generous gift…
of text illuminated with soul and heart and treasured gold

Leah

 ~

Hello Leah:

I’m glad to hear that I was able to reach out to H and you in a meaningful way. I am a semi-regular reader (and lurker) at 30 Days of Autism, and a while back the post about ladybugs and grief stuck in my mind. I knew I wanted to honor his empathy and emotional intelligence with a poem, since the misconception still abounds that we autistics do not have it. Also, what stood out in particular to me was your description of how H uses symbols to represent people he wishes to remember. I believe that each of us has a unique language and lexicon in how we communicate and transmit ideas to ourselves and the world. I tend to think in pictures and moving film, and have unique associations of songs with people or short phrases with concepts (for example, “computer mind and glass shatter heart” to represent what Asperger’s is like for me). Thirdly, I read the post “Inventiveness and Visual/Spacial Thinking” and was happy to read the descriptions of his inventiveness, and some of that informed my poem as well. I was pretty industrious as a child and am gladdened when I observe that in a child or teenager.

Meaning by the speaker and understanding by the receiver are two different things — but it is always a good thing when the two connect. I’m glad this connection was made. H is fortunate to have you as a parent and advocate. I grew up knowing I was “different” and not knowing why. It wasn’t until age 34 that I received my Asperger diagnosis and I spent a lot of time muddling through things myself before then — and as a child and teenager, I found myself wondering what I was doing “wrong”, why I was being bullied, and wondering how I could understand human behavior and overcome my social ineptness. At 36, it is still a journey of self-discovery and I know it will be this way as long as I live — and I welcome such discovery, as is evident that H does through your postings.

In our journeys, it is my hope and prayer that we and others continue to raise awareness and promote understanding of autism. Best of wishes to you.

– N.I. Nicholson

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I really must confess – that I tear up each time I read Ian’s poem and our letters to one another. The support that has been offered to me and to H from amazing Autistic adults in the autism community has changed me to my core. My child is embraced and welcomed for who he is in the moment. This lovely exchange between Ian and myself – is just one example of the incredible sensitivity and care that have been extended toward me and my family.

Thank you so much Ian… for reaching out… for making the connection… and for your gift of words that resonate so powerfully…

Please also note: N.I. Nicholson’s beautiful poem and our correspondence are reprinted here with  permission. I encourage you to check out more of his writing and perspectives on Raven’s Wing Poetry.

Screen Shot 2015-06-13 at 10.44.39 AMRelated Posts:
Ladybugs: Autism, Empathy, and Processing Grief
Inventing and visual/spacial thinking: Got Milk??

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2013, revised 2015)

Posted in acceptance, Aspergers, Autism, Autistic, Communicate, connections, empathy, poem, poetry | Tagged , , , , , , , , , , , , , , , , , , , , | 2 Comments