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.

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in ableism, acceptance, Autism, Autistic, inventing, language, self-directed learning | Tagged , , , , , , , , , , , , , | 16 Comments

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.”

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in acceptance, Autism, Flash Blog, flashblog, limits | Tagged , , , , , , , , , | 2 Comments

On assigning friendship…

You mission… should you choose to accept it… will be to be a friend to this other child in your class…

No – really…

This will be really great!

I will give you extrinsic rewards and reinforcements for being a good friend to this child and it will make me feel good as the teacher to know that this child is being included… and you will feel good for helping someone who needs it…

Nevermind that this is stigmatizing…

And… um… let’s just agree to overlook that it reinforces the underlying message that this other child should be pitied and doesn’t merit being included as they are – as our equal – as a human being  – but instead – as a project…

And… um… maybe we can also overlook that somewhere in there as your teacher I am reinforcing the message that this child with a disability is not worthy of your friendship without my meddling and your desire for my approval…

Seriously though…

When kids are assigned to other kids – it is not friendship.

The act of assignment runs counter to all the qualities that make a friendship a thing. It sends the message that this person isn’t worthy of friendship without the reward of extrinsic approval of being a mini helpery person or do-gooder. And that message is ableist and I think too, it can make it more difficult and interfere with the process of establishing authentic relationships.

It sets up the relationship as unbalanced and unequal right from the start, but there are ways to structure and model things in the classroom (and on the playground – and in our lives) to create opportunities for kids to develop authentic friendships and positive relationships without it being an assignment.

And too… it needs to be considered that pushing children to connect or to be social on our agenda and timeline – is not honouring – some children are not ready… and some might need a break… or…

In the early primary grades, H used to run up the slide as soon as he got on the playground (which was against the rules) so he would get ‘in trouble’ and then be sent to the Student Support room where he could relax building with Lego. He didn’t want to be in the throng and he needed a quiet break to regroup so he could be ready to again be in the classroom (which is a highly demanding and social environment). It would have been nice if a quiet place to renew was an option without needing to ‘break the rules’ and if educators could understand more widely and with greater depth that recess and the playground are not a break for many, many kids.

H and Fallon

H and his younger friend Fallon

Another thing to consider when thinking about the way H is developing friendships and interest in being increasingly social is that it is just fine if he gets on better with adults. If he doesn’t click with a lot of 16-year-olds – the reality is that he will only be 16 for a year, but he will be an adult for a long, long time.

At times, people can be limited in thinking about this and by the way this is framed with the pervasive bias that same age relationships are somehow superior. It seems many systems are stuck in this paradigm and feel they are doing right if they are forcing Autistic students (and students with other disabilities) to be squeezed into it.

My son is benefiting tremendously from connecting with adults and older teens – and also from cultivating friendships with much younger kids. Thinking about himself in a mentoring position is incredibly powerful for building an image of himself as giving and capable.

These friendships and connections are meaningful and REAL.

H and J in the Tower of Terror

It’s a Giraffe Party in the Tower of Terror

Related posts:
Judy Endow on Assigned Friends Outcome
http://www.judyendow.com/advocacy/assigned-friends-outcome/

10940534_335122800031800_8878179744566502263_nAnd while you’re at it… check out Giraffe Party on Facebook

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in ableism, acceptance, Autism, Friends | Tagged , , | 4 Comments

Not on my wall… Boundaries and Entitlement

Hey You - getoffofmywallLately I have seen some parents suggesting that their “Lighting it up Blue” is different – because they have their own kind of family meaning or tradition for it and do not associate it at all with Autism Speaks.

When these people hear that #LIUB is uncomfortable, and that it is considered disrespectful by many Autistic people and those who support them, they seem to defend their position by saying things like: ‘It is okay – we don’t all have to agree… we are still working toward the same goals and I am supporting my child.’

The thing is… this is a little different from being ‘not in agreement…’

For one thing this is blatantly disregarding the voices and perspectives of many, many Autistic people. In fact, not one of my Autistic friends is in favour of “Lighting it up Blue.”

Think about it… this dismissive disregard is identical to the stance that Autism Speaks takes when they exclude the voices and perspectives of Autistic adults.

So saying things like, ‘We are all entitled to our opinions and this is simply a difference…’ or  ‘I am doing this my way because _____’  is actually ignoring and, through this action, even silencing the voices of Autistic people.

I have even seen some parents come into the space of an Autistic person, someone with lived experience – and when it has been explained that “Light it up Blue” and “Puzzle Pieces” and “Awareness” are offensive and even triggering, these same people have continued to defend their position.

What if instead of insisting their right to their opinion – they leaned in to the discomfort of perhaps being wrong. It would be interesting to see what would happen if they tried to understand the impact of negative rhetoric and how this is embodied in blue lights and puzzles as a metaphor for this hateful cure mentality.

Because no matter what… these blue lights cannot be separated from Autism Speaks in the eyes of someone like my 16-year-old son… and no matter what a non Autistic person may think or feel about this… the perspective of the Autistic person should freakin’ trump it all.

Autism Speaks markets the light bulbs, and they profit from them – just as they profit from saying my son is a tragedy that burdens his family and desperately needs to be cured of his neurology.

Those blue lights are a huge advertizing campaign for Autism Speaks, and they are the embodiment of fear and stigma, wrapped in the hateful blue cloak of awareness.

They are disheartening to see… a beacon of shining blue that proclaims to Autistic people – we are aware of you and you are not enoughyou need to be fixed… but your humanity is so lacking we won’t even include you in the conversation.

This is not about me – or other parents… it is simply about listening and being responsive to what Autistic people are saying about what is best for them. Perhaps I can consider it like this… if someone in another culture told me something I was doing was offensive to them – I would stop. I would not try to justify my position; this is pretty much the same situation.

I listen to Autistic adults because they are living the experience of being Autistic, and they have understanding and insights that are far more useful than any book or program I have seen created by one of my professional colleagues.

I listen to Autistic adults because they are the best guides for me in supporting my actions with my son and in helping him to grow up into a proud and well-adjusted Autistic man.

I listen to and then amplify the voices and perspectives of Autistic people to support the roar of their disdain, not just because it is the right thing to do… but because this is how we will create the world as it should be.

Get off my wall

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in ableism, acceptance, Autism, Autistic, being wrong, Boycott Autism Speaks | Tagged , , , | 12 Comments

Pathologizing Kitty…

Pathologizing KittyI’ve been considering that we don’t impose the dog paradigm of communication, where tail wagging means ‘I am happy or excited’ and ‘please give me more…’ on the cats we know and love…

It is interesting that we realize the difference and read the cat’s message of intent in this same physical response as, ‘STAHP that or else!!’ rather than pathologizing the kittyism as poorly executed dog communication…

Perhaps this observation could be teased out with the logical progression of deductive reasoning; the assumption or inference would be that humans possess the ability to learn to understand and interpret communication that presents in a wide variety of ways.

I wonder why we so often fail to apply that understanding to other humans…
It seems unnatural…

~

Cat-Tail-Images

Suspiciously eyes social constructs…

Non-existent tail swishes air in warning…

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in ableism, acceptance, Autism, Communicate, language | Tagged , , , | 7 Comments

Autism and Processing Grief: Feelings Change

This post is a follow-up to https://30daysofautism.wordpress.com/2011/12/29/ladybugs-autism-empathy-and-processing-grief/  and also a very late response to a comment left there. It was started long ago… but due to some things we are dealing with as a family now… it has become relevant to post…

I know now that H feels things more deeply and intensely than many people seem to do – so I have sometimes wondered if he needs to almost shut down or close off the feelings when they become too much.

I have observed that his feelings can be as strong as, and almost seem like an extension of, his heightened sensory system. When he listens to music – he can hear all the sounds at the same time. When he gets a new Lego set – he opens all of the little bags with the sorted pieces – and spreads all of them on the table. I’ve seen him do this. When he creates with his Lego – he can see all of the pieces at once and doesn’t need to search for a piece the way I would.

He sees differently.

He hears differently.

It seems his feelings are just as powerful – and I imagine that can be scary at times.  H needs support so that he knows we are there to help him handle those difficult and intense emotions, and that it is safe to feel those strong feelings. We have also worked hard to support him in learning and experiencing that feelings change – so that in the middle of an emotional storm – he has some understanding that these feelings will not last forever.

When our neighbour Mrs. L died, I took H to her memorial. Craig and I thought it was very important that he have the opportunity to attend and be a part of her ending of life ceremony. It was good for him to see that others were feeling the same way he was – and he also had the opportunity to give her family a copy of the story, Mrs. L and the Ladybug, that I had written to support him in understanding and processing this loss.

It just so happens that this same day – the new Star Trek movie was to premier. I told H that we would be going – but I need to explain here that we did not do this to ‘cheer him up’.

Our intent was different.

As those of you who are regular readers will know,  H is a big fan of sci-fi fantasy, like me (right now we are both counting the days until the new Star Wars film premiers in December 2015), so he was really, REALLY looking forward to the Star Trek movie.

Taking in the movie was fun and exciting – and this happened on the same day that something sad and difficult happened. H asked if he could go dressed as Captain Kirk – complete with TOS phaser replica… and of course I agreed. He held his own with the other fans in the pre-movie line trivia testing that spontaneously became a thing – and – to be honest – his TOS knowledge raised a few impressed eyebrows.

Experiencing these two events close together supported H in understanding that feelings change – even very intense feelings. I wanted to nurture this idea to help to build safety for the pain and intensity when he is in the middle of it all, and to strengthen his understanding that feelings are things that we move through.

Slide09

This is a slide from H’s Dear Teacher presentation. Black text on a green background reads: “Sometimes feelings can really get me down especially when a loved one passes away. The feelings I have are as strong as my listening. I feel things very deeply. I need a teacher to know that I need extra support with my feelings because they are so strong they can be scary. I need it to be safe to feel those strong things and know that people will help me.” Written by H.

I am certain that there is absolutely nothing wrong with the intensity that this young man experiences with his emotions, but it is an intensity that can be frightening. So giving him the tools to deepen his understanding about his own processing is something I want to do as a parent.

I want him to welcome his tears – and to feel things to his soul – and to know that he is safe and supported in feeling those deep things… and that there is a way through. I want him to understand that whether easy or difficult… a feeling is something he can safely and intensely experience…

And just like he will encounter other emotions, he will encounter his sadness again… as he continues to process loss or grief…

It comes and goes… and that is okay <3 and I hope that I am supporting him in being open to this process…

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by autism.

©Leah Kelley, Thirty Days of Autism (2015)   

Posted in acceptance, Autism, Grief | Tagged , , , , , , , , | 9 Comments

And Then You Cry ‘Victim’

When Autistic adults are ignored or gaslighted or tone policed and told they “shouldn’t be so angry” or they are “not like my child,” then the opportunity to learn from the real autism experts is missed.

It may not be comfortable to lean in – but do it anyway – because the change we want to see in the world begins within… <3

poem7.jpg

When you’re told by those
you claim to be advocating for
that you’re doing it wrong
and then you cry ‘victim’
you’re not listening…

When you talk of acceptance
and why this is what you want
for your Autistic child
and then you don’t extend that
to others who share their neurology
you’re missing the point…

When you say that you want
to change the world
but turn away in discomfort
from the things YOU could do differently
opportunity is lost…

L. Kelley, February 15, 2015

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in acceptance, Advocacy, advocate, Autism, listening, poem, poetry | Tagged , , , , , , , , , , , | 3 Comments

Therapy Defined: Self-Regulation

Definition of self-regulation intervention or therapy: H is given the downtime he needs to delve into his interests and to regroup and relax when he needs it…

(And you wouldn’t call this therapy if the kid were non Autistic, you’d call it relaxing.)

DefinitionofSelfRegulation.jpg

Image Description: H is sitting sideways in a blue upholstered arm-chair with his legs hanging over one arm and his head resting on the other. He is wearing casual clothes and a white fleece Adventure Time Finn the Human hat. He is smiling while playing a DS game and his bare feet are angled in a way that indicates continued at-ease movement. Text reads: “Definition of self-regulation intervention: H is given the downtime he needs to delve into his interests and to regroup and relax when he needs it…”
 

For me it is important to consider that the experience of being Autistic can be pathologized in ways I might not easily notice.  As a parent, I hope that I am moving more and more in the direction of understanding H’s experience from the perspective of the social model of disability.

It is not complicated really, but for myself, I find it requires a mindful practice of reflection upon the things I have held to be true, and thus may have not questioned. In particular, I find myself more closely examining the language I am used to hearing and not noticing.  Language is important and powerful, and far too often the pathologization and dehumanizing stance begins and is perpetuated in something as seemingly innocuous as our word choice.

Even for those who reject the disease paradigm, who are not looking to fix their child, and who accept them as they are, there can at times be a tendency to feel pulled toward ‘therapies and interventions’ that are really not natural or helpful or even developmentally sound when we consider moving toward the goal of  growing into a self-determining adult.

Fortunately, there is an alternative and it can really be quite simple:

  • give people down time – when they need it (and also proactively when they don’t)
  • support them in developing self-understanding so they know what they need
  • support them in recognizing for themselves when they need it
  • support them in learning how to get it
  • and nurture pride and sense of self, so that they feel confident and justified to pursue or ask for what they need

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2015)

 
 
Posted in ableism, acceptance, Autism, autism stigma, Autistic, Intervention, language | Tagged , , , , , , | 10 Comments

Autistic Sun

“The image is called Autistic Sun.

That is what it stands for.

Do not trust the puzzle piece.

Do not live with fear.

Just be yourself.

Autistic people can make the world their own.”  H

HSunImageImage description: A mixed media painting (acrylic and black ink) of a golden sun peeking over green rolling hills, surrounded by a brilliant purple sky.  In the centre of the sun there is drawing of an open eye. Yellow rays, decorated with patterns and designs, radiate from the sun. A yellow road with a fence beside it leads across the hills to the horizon and follows the path to the sun as it fades into the distance.

LetterstoAutistickids.jpgH offered to share his painting for use on a new project, Letters to Autistic Kids: To Autistic kids from Autistic kids and Autistic adults (who used to be kids) with love and solidarity.

We need to signal boost this wonderful new project (curated by my spectacular friend Ibby ♥ of Tiny Grace Notes ) because these are the kinds of messages and resources our young people need.

 

Please check it out and give this wonderful site your support!

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2014)

This post is part of the T-21 Down Wit Dat Blog Hop: Click here to enter your link and view the other participants.

Posted in acceptance, Autism, Autistic, Autistic People Speaking, Letters to Autistic Kids | Tagged , , , , , , , , | 5 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… <3

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 promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

©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

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

Harrison 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 promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© 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 , , , , , , , , , , , , | 6 Comments

#AutismPositivity2015: Are you in???

Announcing The Fourth Annual Autism Positivity Flashblog

May 15 th, 2015
15-05-15

April 2015 has been a busy month. There are so many people creating new projects and participating in posAutive events, expressing or amplifying the important perspectives of Autistic people, and celebrating Autistic pride and culture. The #WalkinRed15 event now also extended to May 15th  is a wonderful example of this and is a meaningful actionAutismPositivity2015button.jpg for Autism Acceptance Month!

As fantastic as all of these events are, we understand the potential overwhelm of the demands during this time of year, and how the pressures and stresses of participating in many important Autism Acceptance events can be a drain upon resources.

Frankly – we were feeling it too… and were low on spoons… and so in consideration of this our team has shifted the date.

We think this – in itself – is a lovely metaphor that embodies self-care and acceptance and self-understanding and accommodation in all the best ways… for many of us…

Sometimes we can’t do all the things…

Sometimes this is beyond our control…

But in this instance – and with this event – we can totally break the time-space continuum and create the additional time so many of us need.

We can make an accommodation to suit the needs of our planning and moderation team – and we fully anticipate that this will suit others as well.

So this year the theme is:
“Acceptance, Love and Self-care: #AutismPositivity2015″

AutismPositivity2015button.jpgWe want to know what you are celebrating about yourself, your Autistic family, friend or loved one or what you want to celebrate about Autistic community – and we think it is empowering to share the posAutive ways that we respectfully honour limits and pay attention to self-care for ourselves and for our friends and loved ones.

Let’s start a “tsunami” of positivity to honor Autistic pride, acceptance and love!

Join us in celebrating Autism Acceptance and we will once again flood Google with positive messages about Autism. 

We will have more information detailing how to submit and grab the button over the next few days… so be sure to check back :)

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For the last three years, hundreds of bloggers have come together in a show of support and solidarity in response to negative stigma. The posts that have flooded in from all over the world have been a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we this year again invite you to participate in an intentional celebration of posAutivity and Acceptance within our diverse communities.

We welcome all of you, anyone who is Autistic, anyone who has an Autistic person in their life, and those who blog about autism to create a message of support, wisdom, hope, and pride to this year’s flashblog by posting to:

https://docs.google.com/forms/d/1NCp1QzzX4jtKP2c-mv6hI0qqOHtaXYV_gzukBkgdAP4/viewform#start=embed

To participate:

1. Publish your post on May 15th in the following title format: “[Your Blog] Acceptance. Love, and Self-care: #AutismPositivity2015″

2. Share your post on Twitter, Facebook, and any other social media site using the hashtag #AutismPositivity2015

3. Add your link to the Autism Positivity website (submit here or above) and grab the badge from the page tab above.

4. Share/reblog this message to your blog, page, etc.

cropped-autismpositivitybanner3.jpg

If you have any questions, please contact us at autismpositivity@gmail.com

We can also be found on:

Facebookhttps://www.facebook.com/ThinkingAboutPerspectivesAutismPositivity

Pinterest: http://pinterest.com/positivityautie/autism-positivity-2012/

Tumblrhttp://autismpositivity.tumblr.com/

Twitter@PositivityAutie

Posted in acceptance, Autism, Autism Positivity, Autistic, Flash Blog, flashblog, Space and Pace | Tagged , , , , , , , | 2 Comments

“No More”: ASAN Vancouver Disability Day of Mourning

2015 Day of Mourning. Emma Van der Klift reading a poem by Mel Baggs

2015 Day of Mourning. Emma Van der Klift reading a poem by Mel Baggs

The following is a guest post, composed of the speech written by Norman Kunc and Emma Van der Klift, and spoken by Norman Kunc,  for the ASAN 2015 Disability Day of Mourning. The vigil was held in the Woodlands Memorial Gardens in New Westminster, BC (see link below). Thank you, Norm and Emma, for generously allowing your powerful words to be shared to a wider audience.

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ASAN's Day of Mourning Poster which lists names of Disabled people killed by their parents or caregivers.

ASAN’s Day of Mourning Poster which lists names of Disabled people killed by their parents or caregivers.

“We are here today, not just to remember the lives that have been lost, but to remind the world of the value of these lives. And, in coming here today, we are called upon to bear witness to those lives.

A witness is, of course, someone who attests that something actually did happen and in some cases, like the situation we see in our society today, attests that something is continuing to happen. Today, in sync with many others in many other places worldwide, we come together in this vigil to remember and mourn the more than 75 disabled children and adults that have been murdered in the last 5 years, murdered simply because they were disabled.

We mourn the unthinkable tragedy and unconscionable betrayal that these disabled persons were murdered not by some random criminal or stranger, but by a parent or caregiver, the very people who were supposed to love and protect them. Many of these murders were rationalized by their perpetrators with protestations of love.

Our society seems to take a lighter view on the culpability of those who murder with so-called altruistic motives. Our court systems also take a lighter view, and this is evidenced in the reduced sentences that those caregivers who kill disabled people receive. Perhaps this is unsurprising, given the way disabled lives are generally devalued. There is a pervasive sense that life with a disability is not worth living.

We are here today as witnesses to contradict that view.

Disabled lives are valuable – not only to the person who has the disability, but to society itself. We are capable of making contributions and we do not view our lives as lesser or tragic. In 1994, on the day that Tracy Latimer was murdered by her father, and in the ensuing months as I listened to the media and an endless round of water-cooler conversations on the topic, I was struck with the overwhelming recognition that in the eyes of the public, my life was viewed as less valuable. Tragic, even. I am here to say that these murders are the real tragedy.

My life is not tragic.

Does disability involve frustration and difficulty? Yes. Are some of those difficulties and frustrations because of the effects of disability? Yes. But the most difficult and frustrating aspects of being disabled are actually the attitudes and actions of so many non-disabled people.

Every person we honour here today was a real, living human being. Not an abstraction or a statistic. These were children with interests and joys and sorrows. They were human beings in the fullest sense of the world. None of them deserved the betrayal of death at the very hands of the people they believed were there to protect and love them. Make no mistake – even though you may have been told that these murders were acts of love, many of these individuals were murdered in vicious and cruel ways.

And even though you may have been told that these murders were the fault of a service system that offered inadequate support for families, many of these families had actually refused support. Is it true that families should receive good and adequate support from the service system? Of course. I spend much of my time advocating for those supports. However, when we conflate lack of support and murder, we effectively create both the rationale for these murders, and set the stage for more of them.When society says that the murders of disabled people is an understandable response to lack of service, when society says that we must not judge unless we have walked a mile in the shoes of the murdering parent, we inadvertently condone these acts. And we implicitly agree that disabled people are intolerable burdens and by default, that the world would be better without us.

And so, here we are. Witnesses. With and without disabilities. Here to say No More. To join together, with our allies, to state strongly, fiercely, loudly that the lives of disabled people have value and that no one has the right to take that life, regardless of the stated rationale.”

2015 Day of Mourning. Norman Kunc, reading his speech.

2015 Day of Mourning. Norman Kunc, reading the above speech.

 

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On H’s visit to Woodlands Memorial Garden in 2012 with links to some of its horrific history: https://30daysofautism.wordpress.com/2012/04/02/ghosts-of-the-asylum-in-spring-a-look-back-at-exclusion-and-abuse/

Amythest Schaber’s Day of Mourning speech (video): https://www.youtube.com/watch?v=XZgg43OiYGw

ASAN Vancouver on facebook: https://www.facebook.com/asanvan

ASAN Chapter Leader, Alanna Rose Whitneys, Day of Mourning speech and reading of the names of the Victims (trigger warning – for age of victim and how they were murdered) (video): https://www.youtube.com/watch?v=wCP3Kq31P3U  And an accounting of the day with photos and text on Tumblr: http://alannarosewhitney.tumblr.com/post/113290787019/disability-day-of-mourning-2015-remembering

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

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

Posted in ableism, acceptance, ASAN, Autism, Death, Norman Kunc | Tagged , , , , , , , , , , , , , , | Leave a comment