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 , , , , | 5 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: ‘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

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

 ~

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

~

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

Shades of Slander: A Guest Post from Alanna Rose Whitney

The following is a guest post by ASAN Vancouver Chapter Leader, Alanna Rose Whitney.

Shades of Slander
By Alanna Rose Whitney

Okay, so, the Autism Spectrum is legitimately a thing and there are a lot of people out there who just don’t seem to get it.

Some equate the word “spectrum” with the concept of a scale, which is not what that word means. I guess they’re thinking of a line that runs the gamut of shades from red through to violet. Thing is, hearing the word spectrum should instead be conjuring an image of a colour wheel…

image
ID: Image shows six icons; the apple pinwheel, the adobe colour wheel, red-green-blue and magenta-yellow-cyan Venn diagrams, the ASAN logo and a colour spectrum.

The whole point of using “spectrum” is that it’s an alternative to the out-dated practice of ranking autistics on a line from high to low functioning, verbal to non-verbal, or any other irrelevant criteria.

The very idea of the “Autistic Spectrum” is that our neurotype can’t be defined by a one-dimensional range from black to white with grey in the middle – there are a vast multitude of hues where any given autistic person can be situated on any given day. Much like the wavelengths of light and colour which we all see differently, each autistic person is a variation of the same theme, always in flux, constantly changing and evolving, every individual experience bringing new depth to the chromatic masterpiece that is Autism.

image
ID: Image shows a rainbow cloud composed of handfuls gulal, or multi-coloured powder dyes that have been thrown into the air by a large group of people who are celebrating Holi (glimpses of these people are visible within the flying colours). Photo credit to ‘White Massif,’ an event management company in Bangalore. http://whitemassif.com/7-awesome-holi-party-ideas/

Some fail to grasp the importance of a spectrum that unites us all because they are blinded by a sense of belonging (and simple stubbornness); there are many who don’t want to let go of an identity they finally fit into perfectly. I get that, and anyone is totally free to identify however they want – on their own time…It’s really not cool to dismiss those of us who find functioning labels hurtful.

Anyone who is aware of the harm caused by the negative connotations associated with such language shouldn’t propagate the use of terminology that segregates their own people and promotes ableist ideals.

The following links are good perspectives on why functioning labels are bad:

http://bit.ly/AWNLAS

http://bit.ly/EHBEDFL

http://bit.ly/AHSHFS

http://bit.ly/NWOFLAS

So, basically, it would be really helpful towards achieving equality, acceptance and equal rights if the entire Autistic Community could agree to ditch the old labels and settle on a new term that’s prismatically, kaleidoscopically inclusive.

That’s the spectrum.

image
ID: Image shows two circular spectrums. The first is split into eight sections of different colours with the saturation on a gradient towards white in the centre. The second shows the word ‘spectrum’ fit into the aforementioned sections of the same circle. Instead of a gradient, the second image has the letters each in one of eight colours and the space behind them in the opposite colour.

If we separate ourselves into different classifications of autistic, whether that’s using functioning labels or adamantly sticking with “Asperger’s,” it is guaranteed to encourage the kind of ableist behaviour that will allow others to use our differences to maintain a caste system based on their own arbitrary values.

Like I said, people should call themselves whatever they want on their own time, be whoever they want to be… but please, everyone – stop condoning practices which help to put the rest of us into boxes we’ve had no hand in creating and have no desire to be trapped by.

Yes, everyone is entitled to their own identity, but no; being autistic does not give any one person a free pass to trivialize the discrimination that others have experienced. And, F.Y.I., that’s exactly what many are doing when they insist on using functioning labels or person-first language.

image
ID: This diagram shows the same circular spectrum as in the first of the pair of colour wheels in the previous image. Added to it around the outside of the spectrum in blocky lettering are eight section titles and within each slice of the circle is text that indicates a sliding scale from one state to another (two words or terms with an arrow between them).

The eight sections are as follows:

Emotional Sensitivities = empathetic > stoic

Physical Sensitivities = sensitive > stalwart

Physical Conditions = tough > tender

Motor Skills = dynamic > static

Disability = prolific > expendable

Neurological Conditions = impulsive > compulsive

Communication = articulate > expressive

Filtering & Processing = perceptive > perplexed

Note: The above image is a visual representation of how different hues can be related to different types of autistic qualities. It displays only eight categories with a straightforward scale attached to each which by no means covers every autistic experience. The idea is that any person can simultaneously be in many places within the spectrum and that each point of reference is constantly fluctuating. This is just an example of how the spectrum can be seen.

Autism is neurological. It’s irreversible and immutable.

We are autistic; we are autism.

It’s not possible to separate a person from the essential aspects of their being and personality. Yes, autism can be hard and disabling, but it also has a myriad of multi-faceted benefits. Those two sides of it cannot be separated either.

No one is with their autism anymore than they are with homosexuality or heterosexuality. No one is with their autism anymore than they are with their gender or nationality or religion or political beliefs.

I am an agnostic living with astigmatism. Note the difference.

image
ID: The last image shows a line of circles that each contain a small section of one of six abstract paintings. Each one is different but all of them show a spectrum of colour.

Everyone is entitled to their own opinion. I can’t disagree with that, but this is about more than how we all take our eggs in the morning; it’s not a debate between scrambled and sunny-side-up (or nothing at all because eggs are sensory minefields) – it’s about a whole diverse group of people who have been oppressed and pigeonholed for centuries.

This is about human rights. This is about respect.

Don’t let prejudice lead to violence. Read and share the #DDoM2015 list of names. Understand why we, as a community, must concur on a palette which encompasses all of our needs.

Together we can shift the winds of change towards acceptance and understanding, and away from analyzing and evaluating the functionality and worth of other human beings like we’re specimens in a lab.

Instead of examining and ranking each person by the potential for remuneration, let’s opt to value each other for the uniquely colourful creatures we are. Humanity is a spectrum, our planet is a spectrum, the whole universe is a spectrum; autism is a spectrum.

Let’s embrace the rainbow.

~

Alanna’s original post can be found on her Tumblr: http://alannarosewhitney.tumblr.com/post/113254781979/shades-of-slander

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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, Aspergers, Autism, Autistic | Tagged , , , , , , , , , , , , , , , , , , | 6 Comments

The pathologization of interest and curiosity

As I am increasingly connected with people in Disabilities and Autistic communities, I am finding that there were things that in the past sat quite comfortably with me – that now – looking back – make me uncomfortable.

I sometimes feel like I would love to delete a whole bunch of posts, or at the very least reword them. I resist this, because I think it is important to be able to look back and be reminded of the shifts I have made. Almost invariably, those shifts have come from my friendships and connections with Autistic adults and from reading their work (which you can check out on my blog roll to the right ➜).

So ya… I am a work in progress…

One of the things that has been occupying my thoughts for the last while is the idea of intense interests or special interests. I have written about these before here and here and here.

I have stated that the potential for skill development embedded within a self-directed special-interest project is enormous.

I said:

When special interests are supported with opportunity…

…innovation, problem-solving, and positive development are inevitable!

                                               ~L. Kelley~

So… please… bear with me and I promise I will try to pull together the threads of my current thinking on this, because some of it has shifted.

It is important to support H’s interests and I believe that these are the foundational to so much of his development and also the satisfaction he finds in being who he is meant to be.

His interests renew him and soothe him and support his growth.

Deliberately and by design, we give H tonnes of time to spend exploring and pursuing his interests and to talk about them. We are interested and excited and share the excitement of his journey, and I find that I end up learning much about his current passions. Thus, I have an immense and detailed knowledge of things like Star Wars, Star Trek, retro pop culture, horror b films, and Zombies (to name but a few) that I might not otherwise have, and I am currently being schooled in Blacksmithing (and I am not being sarcastic).

H is at ease and is fueled by his interests, which is a part of the reason he is home-schooled, via a distance ed program. We believe it is important to protect his time and resources and to ensure he has the space and pace to delve into his interests and be as self-directed with these as possible. He is more communicative around his interests (as are we all) and his social interactions in the domains where these can be found (ie: skulking in a thrift shop) are relaxed and confident.

I also resist the tendency to formalize the teaching or training around his current interests, as this sort of meddling seems to squelch them. I want him to be at the helm. I would suspect that a typically developing non Autistic teen, who is showing an aptitude with building or making movies or learning to work with metal, might be enrolled in some sort of more formalized instruction. This is not useful at this time for H, though I’m not saying it wont be at some later point.

His learning seems to happen more organically – and holistically – through a total immersion in his current interest.

He is an inventor.

He is a blacksmith…

or a Jedi..

or a Hobbit…

absolutely and completely…

It is beautiful really.

Throughout his childhood, and as he is transitioning to adulthood, I have been unfaltering in my support of my son’s interests (even though at times I’m admittedly in quite over my head). However, it as I am considering this in the context of ableism, that it seems I may have missed something here… and it is dawning on me that this may be something big!

Screen shot 2014-08-25 at 7.09.06 PM

Image Description: Wooden fence with peeling paint frames a large speech bubble. Test reads: ” ‘I am wary of the ableism and ignorance that is present in the pathologization of interest and curiosity. When curiosity and adaptive learning are framed as perseveration or obsession, opportunities for development and fulfillment are inevitably lost.’ Leah Kelley – Thirty Days of Autism”

I have long considered that there is ableism and ignorance in the pathologization of interest and curiosity, when it is framed as perseveration or obsession, and I rejected this stance even before I could talk about it in such terms.

However, I am now seeing an aspect that I hadn’t considered. I am understanding with more depth that I must be wary of less obvious (to me at least) language that pathologizes strengths, such as curiosity and adaptive learning, by framing these in a way that potentially reinforces stigma.

So many times I have unquestioningly adopted language that is prevalent and commonly used that to describe the interests of Autistic people – like my son – and I am now wondering if there are elements (once again) that I need to question as potentially disrespectful and problematic.

So here’s the thing… I am considering/reconsidering the use of the word ‘special’ when referring to interests, because I am wondering if that is dismissive and diminutive for this young man who is very rapidly approaching adulthood.

It feels uncomfortable to me… or perhaps more it makes me uneasy. Though I am not certain that term captures what I want to say, uneasy may be the best word I have at this time, though I would like a word that also layers in curiosity and a reluctance to come to a definitive conclusion. An uneasy wondering perhaps… because, if I would not describe the interests of non-Autistic person in such a way… then this is something I feel I need to question.

When I asked H how he felt about the use of the term special interest, he said: “I would rather it just be an interest. I don’t like the way people use the word ‘special’ in all sorts of ways to mean I am different. I think special is another way of saying you’re less than.”

Then before he went back to his current project he added, “That’s all I’ve got.”

Of course, this is personal; it is specific to our situation and reflective of my process and of my son’s response to my wondering. In a way, this is also a microcosm of something bigger: a glimpse into my own continuous journey of letting go and of supporting this wonderful young man on the next part of his development. I am willing to own this, but also want to clarify that I am by no means suggesting that the word ‘special‘ in relation to interest should not be quite comfortably used by others if that suits them. Neither am I suggesting that ‘special’ be added to a list of ableist language that has to be the same for everyone…  but in this context – for my son – and for me – this is clearly the case.

I will continue to support H’s development and the beauty of the intensity of his interests and curiosity that drives his self-directed learning, and to celebrate his explorations and his inventiveness, but I will no longer be referring to these as ‘special‘… at least not until we refer to everybody’s favourite topics, interests, or activities that way, and/or he indicates a shift in his own feelings about this.

I expect I will continue with my uneasy wonderings about things I haven’t closely examined when I have to opportunity to see from a different angle… because so often I discover something I’ve missed, and I have much to learn.

blacksmithjoy.jpg

“Blacksmith Joy” Image of H wearing jeans and a Don’t Get Bit zombie t-shirt in a garage strewn with projects and tools. He is holding a 3 lb cross peen hammer and is about to strike the blade of a metal broadsword that is he is holding with his other hand against a work bench. He is looking downward at the project with concentration and confidence.

Please check out this beautiful related post:
Self Care Looks Like “Special Interests”  By Michelle Sutton _________________________________________________

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, Autistic, inventing, language, self-directed learning | Tagged , , , , , , , , , , , , , | 24 Comments

‘Glitchbusters’ the Movie…

Glitchbusters8.jpgH has been busy making a new movie, which he has delared a spoof. I won’t bother to disclose because, well, I’m fairly certain you’ll be able to figure it out.

It is called Glitchbusters.

So… this morning he was busy creating and editing an image that he needed for a costume.

We had no idea what he was up to at the time, H was simply doing his thing… as were we all.glitchbusterslogo.jpgPrepping the costume:

Here he is wearing one of his Nintendo DS gaming consoles on his waist. According to him, this is required equipment, enabling the Glitchbuster to absorb or trap glitches… and possibly even BDG’s (Badly Designed Games).

H is what he refers to as a retro gamer, and our living room has become the home to an interesting collection of vintage electronics. (I should add that vintage by H’s definition means the 1980’s – Yikes!)

glitchbusters5.jpgHe prepped the scenes and filmed with his iPad.

Glitchbusters3.jpgI had a small cameo and offered a bit of help with filming one short clip – as H needed an angle that he couldn’t get without assistance.

Glitchbusters6.jpgEditing and background music:

H chose an 8-bit version of the Ghostbusters theme to play in the background whilst he was filming. He insists that there is something inherently cooler about it because it is 8-bit.

I, on the other hand, have no comment or opinion of this, except that I have learned to trust his instincts with stuff like this…❤

glitchbusters7.jpgHe edited it on his computer and flew in some special effects!

H was done his project in one day… and, as a bonus, I think we should be safe from glitches at this house for quite some time.

Now… if only there was some kind of plan that mirrored this vision and efficiency for reining in the growing snarl of cords, blasters, etc, and vintage consoles that have taken up residence in the corner of the living room.

Hmmmm… perhaps we need H to create a magical wardrobe…

Related Posts:
Saturday Night at the Movies: Sharknado and B Film Mania
Autistic Pride Day 2013
The Spectacular Joy of Inventing


Please note: This previously unpublished post was originally written in 2013…

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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 Autism, cosplay, inventing, making movies, retro pop culture, self-directed learning, weekend | Tagged , , , , , , , , | Leave a comment

H on Acceptance, Love and Self-Care: #AutismPositivity2015

Acceptance is
knowing people have your back.
Acceptance feels like
it is safe to be yourself.

Self-care is
fidgets in my pocket,
stimming,
long baths before bed,
knowing when I need time alone,
knowing my limits,
welcoming my intense feelings,
hanging with friends,
and knowing my interests are important.

Love means so many things
I am accepted
Love holds me
Love lets me be me.

#WalkinRed Image description: H wearing a red shirt, chewing his stim necklace, sits relaxed and curled in a large armchair. Text reads: "Walk in RED, Relax in RED, Stim in RED, And be your own true self."

#WalkinRed
Image description: H wearing a red shirt, chewing his stim necklace, sits relaxed and curled in a large armchair. Text reads: “Walk in RED, Relax in RED, Stim in RED, And be your own true self.”

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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, Flash Blog, flashblog, limits | Tagged , , , , , , , , , , | 2 Comments

Holding Space as Acceptance, Love, and Self-care: #AutismPositivity2015

AutismPositivity2015button.jpgI think about self-care rather often it seems… though I’ll admit that if I were to define self-care as I thing I do, I don’t actually engage in it quite as regularly as I contemplate it…

I think though, in my typical-atypical-fashion, I might like to twist this topic a bit and try to think about it and explore self-care from another angle.

Perhaps self-care is not just about a thing we do – but it is also very much about the thing(s) we do not do – or do later – or do with support – or do differently… and the ability to do this (or to not) is intrinsically connected with love and acceptance.

Perhaps it is also connected to holding space… for ourselves and for others.

I love the metaphor of holding space. To be honest, I am somewhat mesmerized by what I see in the richness of possibility that exists in the multiple interpretations of this concept.

I am so powerfully drawn to the liminality that I can get quite lost in existential meanderings when I contemplate the idea(s) of holding space…

I suppose… H and I have been indirectly talking about holding space for others as we are processing the loss of my father, who died in early March. The past few months have been a time of intense loss filled with powerful emotions – but as our family is moving forward, I have been considering how we might honour this space that was filled by my father.

I have two other posts on my blog that are about my father (aka Papa). Interestingly, one is about acceptance and love, and the other is about limit setting, so I suppose it is natural for me to be considering him when I am writing of Acceptance, Love, and Self-care.

I think I miss my father so much in part because I miss being wrapped in that feeling of acceptance.  I feel badly for my children that the strength of his acceptance and love is now missing for them… and… I feel badly for myself.

But I am finding my way… and I am seeing how connected acceptance and love are to self-care… and how Papa shared that as such a gift for others in the way he also held space for others.

Holding space is a way of demonstrating acceptance and love – and it is crucial to building a positive sense of self, and self-understanding that is partnered with feeling deserving of self-care.

When we demonstrate that we value other people, they can more fully appreciate, understand, and value who they are… and then they are supported in extending care to themselves and beyond.

Perhaps this is the opposite of shame…

Harrison and Papa Smooch- B+W

H and Papa Smooch

I think perhaps for me one of the most profound things has come to me in my efforts to support H. When we knew things weren’t going well for my father, H was in tears and said, “You know I am really going to miss Papa. You know there’s going to be a hole in my life – there’s going to be an empty space…”

And it was one of those moments when I paused… thinking please let the words come to me.

And I paused another beat…

And then I responded, “You know, H, you’re right – there is going to be a space there – a space where Papa was and now he wont be there – and that is going to leave an empty place in our lives and in our hearts.

But there is something about that space that is important. We have an opportunity to consider that spot – that place he held… and now it’s empty…

We get to decide what to put there.
And part of that is choosing something that will be honouring of Papa.
And when we put our energy into that place I think in that way he lives on.

If we do something that would make him proud or that would make the world a better place, then we use that energy that would have been there – and we make it into something that is good.

I think that is what a legacy is…”

When I think about my father, I am reminded of so many things, but I am perhaps most moved by the way he was deeply, deeply accepting of people… and welcomed us all to the table, or the comfy chair in his study – to just sit quietly, or to bounce around ideas or possibilities, or to argue the finer points of philosophy or politics or the education system… or to get a kick in the butt …or to just get some much-needed words of gentle guidance and encouragement.

He was someone who was completely willing to entertain lofty goals and outrageous dreams… and then help lay down a plan to make the almost impossible a reality.

I choose my steps and move forward in a way that I hope is honouring of my father… now the tables have turned and we are holding space for him.

Bedtime Chat and Cuddles with my Father

Bedtime Chat and Cuddles with my Father

Recently I have been talking to H about holding space in another way…

We were meeting with friends and I asked ahead about how we might best support their son, who is also Autistic and is the same age as H. I wanted to support H and this other young man by understanding what we might need to know about how he communicates and how best to connect.

The response of this family was that they appreciated being asked and suggested that people always do better when they are met with an approach of holding space.

This modeling and these opportunities for H to be aware of and honour the support needs of others, also has embedded within it the powerful message that his own needs are valid. It is empowering to for H to understand ways that we respectfully honour limits and pay attention to self-care for ourselves and for our friends and loved ones.

We are honouring space… place… pace… with this message:

You matter and we acknowledge you and make space for you – we hold it – we make sure others see you there – we give you room to be involved at whatever level is working for you in the moment – and whatever that may be – we accept and encourage it…

And if it changes… if it is different later – if you need less – or if you find you are seeking more – we don’t hold what you needed before against you… and we don’t use it as a measure of what you might or might not need in the future.

The message is: I accept you in this moment exactly as you are…

You are welcomed…

I see you… you are whole…

You are enough…

I hold space for you…

I watched my son with this other young man. I witnessed his capacity for acceptance  – and for holding space in a way that seemed so like his Papa.

I think perhaps this is a bit of his legacy. My father, H’s Papa, would be proud.

Acceptance, Love, and Self-Care 6

Although acceptance and love provide self-care and other-care in and of themselves… their very existence sets the stage for the honouring of self. Acceptance and love hold space in a way that welcomes everyone to the table… at their own pace… in their own time… and in their own way… authentically honouring each person and their experience. When we demonstrate that we value other people, they can more fully appreciate, understand, and value who they are. Perhaps this is the opposite of shame…

Though his absence is deeply felt, my father’s default to love and acceptance helps me to now hold space for myself and H and others. Papa’s legacy is found in the way H and I move through life now, and holding space for him is a way of caring for others and for ourselves…

And I am grateful…

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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, Autism Positivity, Autistic, Flash Blog, flashblog, Grief, letting go, limits, Love and Self-Care, relationships, self-advocacy | Tagged , , , , , , , , , , , , | 7 Comments
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