Crossing the line: The Danger of Compliance

As Amy Sequenzia so eloquently states: “ABA is not only abusive to Autistic children, it makes ableism and abuse acceptable. “Experts” want 40 hours/week of this and parents who don’t comply can lose their children. ABA creates a culture of normalized abuse.”

~

The following is a guest post composed of a series of writings by Bernice Olivas, who has generously agreed to share her experience. Hers is a harrowing story, but one that illustrates the dangers of demanding compliance on so many levels – and it is a story that needs to be understood.

It’s been two years since Nebraska’s Child Protection Services threatened to take away her children because she refused to place them in full-time (40 hrs/week) compliance-based training.

She and her husband were never accused of abuse or neglect, the only reason CPS was involved with her family was because her children are autistic and some of their behaviors were deemed “weird.” But there is a complexity to the issues that are relevant here and that seem to arise at the intersection of ableism, racism and poverty.  Bernice shared, “Because we are poor, brown, and my children are autistic it was presumed that we were incompetent and unable to make the best decisions for our children.”

In response her husband and boys moved back to Idaho where they had a better system and support, while Bernice remained behind to finish her education. Although her university program has supported her in spending as much time as possible with her family, she and her family have been forced to endure a heart wrenching separation. In March, Bernice will be returning to Nebraska for the final haul. She expects it will be a full year, maybe 14 mo. It’s been a rough two years…

Bernice’s allegorical tale below, is a beautiful illustration which provides a nuanced insight into the very real concerns and threats she and her family are facing, because of the overreaching and inaccurate assumptions that are made about the appropriateness of ABA and compliance based training. There are other options to the so-called evidence based intervention that has been pushed upon this family: options that honour the child and what their behaviour and reactions reveal about their experience  – options that build trust and connections and relationship – options that accept a child fully at the very place they are at, and then build upon their strengths in natural and healthy developmentally appropriate ways of learning for any child. When a family chooses these less pathologizing methods to support and nurture their child – they should not be faced with the decisions that this family has had to make.

~

The further adventures of Danger Baby and Destructo Boy

By Bernice Olivas

Introducing the Normalizer!

After Danger Baby and Destructo Boy defeated the evil corporate babies who were hell bent on baby proofing the world they looked forward to a break or maybe a vacation. Alas, that was not to be!

Little did they know that the CPSO (Child Protection System overlords) was plotting against them; CPSO goal was to “fix” our awesomely autistic duo through I-BITE (Intensive Behavior intervention torture enforcement). They decided that it was not okay for the Duo to get naked, or not wear socks in the winter, or be too loud, or too autistically awesome. Instead, they must conform to the standards set by CPSO. They must wear clothes ALL the time, and learn to speak like “normal” people. They must think, act, and feel just like everyone else all the time.

Our duo was in greatest danger ever so they told the Momlady and Daddyman about their secret identity as superheroes and the whole family vowed to fight CPSO together. Momlady tried to thwart them with paperwork and the power of education and Daddyman did everything he could to scare them away. Alas the CPSO was too strong and they have agents working everywhere; the park, the school, and even the grocery store. Whenever the duo behaved “un-normal” CPSO was called and even though they could find no reason to find fault with the family they used the calls as a reason to call in the Normalizer. Outwardly the Normalizer looked like a twenty-something “case manager” on one of her very first cases but she had all the powers of the system overlords at her fingertips and she was out to get the autistic duo. No child would every be happily naked on her watch!

The Normalizer: “You WILL take our HELP or we will take the awesomely Autistic Duo away and “reeducate” them. if these behaviors continue then the system will take them away forever.”

MomLady: “And if we refuse”

The Normalizer: “The act of refusing our help puts you on our “at risk” list and we no longer need your permission.”

Momlady: What can we do to make you happy?

The Normalizer: “You must go to a support group and listen to other parents talk about their autistic kids as if autism is an alien who snatched their baby. You have a rotten attitude about all of this, what kind of parents let their kids be so different! And this Daddyman at home thing, it is weird—fix it! Mommies should stay at home. When Daddy’s do it it’s just too difffernt. And stop being so brown and poor. We don’t like that. And the boys will submit to I-BITE. Mwahahahah!

Momlady: But that will change the awesomely autistic duo into completely different people and teach them to feel bad about being different!

The Normalizer: EXACTLY!

Momlady: But that’s so wrong.

The Normalizer: Normal is never wrong! It’s always right just because it is normal!

Momlady: Okay. We’ll do what you want.

Bur secretly the family devised Operation Houdini. Daddyman would fly home to Idaho where CPSO was powerless in the face of the fSS (family support system) and the Momlady would stay behind and learn the secret ways of the CPSO and continue to work on mastering the power of the PhD so that the awesomely autistic duo would never be in danger again!

Phase one of Operation Houdini complete… too be continued.

~

And finally there is Bernice’s gut wrenching essay, which quite took my breath away, and left me weeping and struggling to relax the tell-tale lump of emotion in my throat. Bernice’s essay examines the pressure for compliance on multiple levels and shines a light on threats and dangers that arise when systems do not support the needs of those they propose to serve. This essay is a compelling work, though due to its length is not printed in its entirety. (A PFD of the entire essay is linked below.)

~

I don’t want to miss you

By Bernice Olivas

“But I don’t want to miss my Mommy,” My son Gareth says. He just turned eight this year. His eyes are wide and his mini Mohawk has begun to grow out. He looked like such a big boy when he got the Mohawk, he doesn’t look like a big boy anymore. He looks like a baby. He is crying and grasping my fingers. “No Idaho, please. Want mommy.”

“I’m sorry baby, but we are all done with Nebraska. It is time to go home to Idaho. I wish I could go with you but I have to stay here. Mommy will see you in June. Mommy loves you so much.”

“But it doesn’t make any sense!” He is angry now and I can’t breathe because if I breathe I’ll cry, and I can’t cry. I can’t cry. “No baby, it doesn’t.” I hold him tight one last time and then his father takes him from me. Our eyes meet and he reaches out to me with this other hand, we brush fingertips but do not hold on. We can’t hold on now, not if we’re going to do this thing,

They leave. I still don’t cry, not when they pull out of the drive, not when I can’t see them anymore, not as I tick off the miles in my head. I clean and pack and make plans and in my head I am keeping time. They are an hour away, three hours, and then six hours. It is February 18th, coincidently the day before I turn 32, and I am keeping time in my head until my children cross the state line. Once they are out of Nebraska I can feel safe. When they are somewhere in Wyoming I sit on the bathroom floor, lights off, and in a time honored tradition of women and mothers everywhere I shove a towel into my face and wail. I let it catch the tears and the keening noise I am making, because even alone I cannot unlearn that this kind pain should remain hidden.

*

What I don’t tell my sons and what they must never know is this

*

You are not safe in Nebraska my beautiful, autistic boys. Your autism baffles teachers, disturbs neighbors—your autism is too noisy, too messy, and often too naked. The way you flap and spin, the way you react to too much or too little sensory stimulus and your unrestrained, unexpected laughter are read as “unacceptable behaviors” here. Our CPS case manager does not speak body. She cannot hear I love you in a gentle head-butt, or decipher what you really mean when you repeat back commercials or movie scripts. She doesn’t understand and she thinks that your “behavior” is an indication of my neglect or abuse. She thinks that because I don’t make you wear socks with your shoes, not even on snow days, that I am neglecting you. She will not hear me when I try to explain that socks makes you itch and ache and fret and want to be free of the weight on your skin. All she sees is you misbehaving, getting undressed, not speaking when spoken to. That, my beautiful son, is not OKAY here. You are not okay here. So I must send you somewhere safe. Somewhere you will be okay.

It is so not-okay that total strangers accused us of neglect when they saw you get undressed at the park and when they see you undressed on our balcony. It’s so not-okay, that people at your school accuse us of neglect for not forcing you to wear socks even though they have witnessed the way socks make you scream, scream, scream and make you tear them off or scrabble madly at your shoes until you hyperventilate and curl into a baby ball and keen. It is so not-okay that our case manager, even though she herself has admitted that there is no evidence that we are bad parents, bad people, has said, “You need to take our help because if these behaviors do not stop your kids will end up in the system.”

BerniceOlivas4.jpgAnd what she meant, my sons, is that I need to allow them to send an analyst to our home and your school to observe you, to find the problems with you, and then create a program to “fix you”. The state wants to teach you to comply. They will give you a treat (a reinforcer) when you are good and physically walk you through the motions of obedience when you say no. Your right to say “NO” will be trained out of you. It does not occur to them how naked and vulnerable a person is without their “NO”. Wars have been fought for the right to say “NO”. But I am supposed to give yours away, let them train it out of you for the sake of my convenience, for the sake of “good days” at school, and so that complete strangers are not made uncomfortable by your “strangeness”. NO! No! No! You are both wonderful just the way you are. But if we do not comply “voluntarily”, if I refuse their help we will be relabeled as “at risk” and I will no longer have the right to refuse their help. The threat is clear, what she meant was, if we didn’t comply she would take you away from us.

It is also not okay that we are poor and that your father is the stay at home parent. Our case manager keeps calling your daddy “unemployed” and says to me that he is the problem. He is too aggressive, to over protective, his attitude is too negative. Daddy calls her out for talking down to you. Daddy steps between you and her when she ignores your boundaries. Daddy scares her. She says he needs to go back to work. If he does the state will pay for daycare. When I push back, ask her to consider the fact that she might be overstepping some lines, she says that “everything happens for a reason” we should be more open to learning from her and the situation. She is in her early twenties, we are her second or third case and by her own admission she’s “never worked with an autistic family” and “doesn’t know anything about autism” but she assures us that she’ll “Google” it. In Nebraska your life is in the hands of a person who has spent less than three hours in your company, who has no training in autism. In Nebraska, the case managers, the anonymous callers, the school social workers are all considered the experts and the parents are treated like the enemy if we don’t comply.

So if I don’t let you go, right now, with no explanation, without saying goodbye to your friends and your teachers I could lose you. I could lose you to a system that sees you as a broken unit to be fixed or replaced, a system with a vile history of taking children out of their homes and losing them, as if they were mittens, or pen caps, or old receipts, or rubber bands.

I can’t tell you any of this because I cannot stomach the thought that you might hear, your fault, this is your fault. I know I will answer to this later when you are almost-men and you call me to account for my mistakes, as all children do. I hope you understand. I hope you don’t see my sending you away as cowardice. I hope you don’t see my staying behind to finish my PhD as abandonment. I hope you understand why all I can say is, “I don’t want to miss Gareth and Osiris either, but we are all done with Nebraska, it’s time to go home to Idaho.”

*

At some point after they are gone I fall asleep in the couch, clutching their comforter. The next day I go school. I am a Doctoral student at UNL, a member of the English department. I teach college students and work in the writing center. I hold a Master’s degree. According to the 2012 U.S. census just over 10.3% of the population holds a comparable degree. Only 4.1% percent of Latinos hold the same degree. Those numbers get smaller as my gender and Native heritage are taken into account. I am first in my family, on either side, to obtain a college degree, the first to obtain the Masters, the first to be accepted into a doctoral program. My Master’s Thesis was on the subject of Autism. One of the guiding Professors in my research was an expert in the area of Severe Disabilities and Autism Spectrum Disorders at the Barkley Memorial Center, University of Nebraska. My education does not protect my children. A case manager in Nebraska is required to hold a B.A but not required to specialize in social work, family services, or education. No one I interact with in child protection services specializes in Severe Disabilities or Autism Spectrum Disorders or special education. That day I teach, I run office hours, and I smile. I come home to an empty house and wonder again how all of this happened, and why…

Please read Bernice’s complete essay, available as a PDF here: I Don’t Want to Miss You – Bernice Olivas

~

Related Links:

This is what compliance training looks like:
https://www.youtube.com/watch?v=cWscK_Lb1W8

Here are some concerns about compliance training:
http://www.speakforyourself.org/2014/02/22/accept-behavior-towards-non-autistic-child/

And here is what happens when compliance training goes terribly terrible wrong:
https://adiaryofamom.wordpress.com/2015/01/30/judge-rotenberg-center/

BerniceOlivas2.jpg

_________________________________________________________ 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 ABA, ableism, Autism, Behaviour, Compliance, family, Intervention, Parent | Tagged , , , , , , , , | 19 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 , , , , , , , , , , , | 2 Comments

Painting the Dog and Love as Self-care

My brain is full of stuff that I am trying to work through – and I trust in the process – really I do… but I have to remind myself of this – or I can get in the way.

I am a bit bogged down by all of the things I feel I am supposed to be doing… and this is usually an indication that it is time for some self-care. My shoulders are tight and I have hardly written here at all…

And all of this bogging down feeling… it is mostly with things I actually want to do.

There are grand adventures on the horizon… I know.

But there is some slogging first and I am having trouble with that.

And now today, on this rainy Sunday when I should be doing a billion things, H and I are making Valentines for some wonderful little people as part of a very cool Valentines Exchange via good ol’ fashioned snail mail.

HeartPainter1.jpg

Image: H is at the kitchen table painting heart-shaped and other cardboard bits with pink and red paint. He is looking down at the heart he is currently painting red.

It is spectacular that there are opportunities that seem to insert themselves in our lives, where H gets to be in a mentorish role with Autistic people who are younger than him.

I love H’s standing-taller-stance-of-pride when he knows how his actions can impact others. I love the opportunity for him to pay forward the acceptance he has received, because this act is affirming in itself and helps to empower and internalize pride in his identity.

Positive action, however small it might seem in the moment, lessens the hold and power of the negative stigma so present in media and so commonly present in discussions with those who are fed mostly by that same widespread media rhetoric.

I have come to understand that these small moments of positive action are collectively something much greater. They exist in H’s present, and resonate in an ongoing way that connects him to community and to his sense of having a positive impact within community. Here is what he wrote about that:

SendingLovetoMaxandTy.jpg

Image: H is holding two hermit crab Valentines with heart-shaped shells and pincers. Text Reads: Sending Love to Max and Ty. The other day me and mom made Valentine’s for two boys. Their names are Max and Ty and they are Autistic just like me. I am older than them so I have the chance to connect with them to let them know it is good to be Autistic and they are part of the Autistic community. People have treated me this way too and it has made me feel good about my self. I hope that Max and Ty make it far and know other kids like me care. Written by H

The negative stigma may still be out there – but from within our lives we can make positive steps – that give to others, while at the same time they are beautiful little-cumulatively-giant gifts to ourselves.

Expression of love and appreciation is a gift in itself… including those who are giving it.  I am reminding myself that giving to others is self-care too, because as we carry it with us, and it resonates in identity.

And thus, I want to take this opportunity to show my appreciation for the beautiful  perspectives that nourish and sustain me as well. Some of the best blogs I have encountered are posted in my blog roll listed to the right ➜. This list predominantly includes work written by Autistic people who have shaped my parenting and practice as an educator, and have had more positive impact than I can even express.

So I am offering this image of Finnegan the Rainbow Dog as my contribution to a The Love and Acceptance Virtual Valentine Exchange that is being hosted by PACLA: Parenting Autistic Children with Love and Acceptance.

I love that it is sitting in front of a sign I have on my office wall that reads: “In a world where you can be anything… be yourself.”

It wasn’t planned that way – but sometimes I find the universe gives me a little nudge.

This is a good reminder.FinneganRainbowDog.jpg

And then with a few digital alterations… this happened…

    Image: Acrylic painting on canvas depicts a brightly multicoloured patchwork looking dog overlaid with colourful patterns of stripes, dots, stars and swirls with a vivid green and blue background. A bright sun with a patchwork heart is in the upper right. It is signed L.Kelley '15. Text reads: "Love, Appreciation, Acceptance." Watermark reads: "Thirty Days of Autism: Leah Kelley"

Image: Acrylic painting on canvas depicts a brightly multicoloured patchwork looking dog overlaid with colourful patterns of stripes, dots, stars and swirls with a vivid green and blue background. A bright sun with a patchwork heart is in the upper right. It is signed L.Kelley ’15. Text reads: “Love, Appreciation, Acceptance.” Watermark reads: “Thirty Days of Autism: Leah Kelley”

Love and Appreciation to our Autistic and otherwise Neurodivergent family members and friends! We are so happy and grateful to have you in our lives <3

Leah and H

Note: You can make a Valentine and submit it in a PM (private message) to PACLA. It can be a video or a poem or a drawing, or a painting, or a photo of something your made – the possibilities are wide open…  _________________________________________________________ 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, connections, Parent | Tagged , , , , , , , , , | Leave a comment

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 , , , , , , | 8 Comments

Livetweeting #CitizenAutistic

Screen shot 2015-01-06 at 1.45.02 AMMy wonderful friend Lei Wiley-Mydske and I are thrilled to announce another venture into the world of livetweeting film! We have done a couple of livetweets together over the last few months and they have gone rather well.

Our first livetweet happened without any real planning as a collaborative effort to support one another online and in real-time to view Autism Speaks’ Sounding the Alarm: Battling the Autism Epidemic, when this travesty of a film came out on Netflix. We took the opportunity to tweet a rather scathing review of the film and make commentary on the way that the perspective of Autism Speaks and their stigmatizing fear-based rhetoric is harmful to Autistic people… and we may have thrown virtual rotten twitter tomatoes at it… but don’t quote me on that.

Our second livetweet was for a lovely film, Vectors of Autism: A Documentary about Laura Nagle, which was well received. We put a bit more planning into this and were pleased to facilitate an event that had Vectors at the centre of a community building experience that also promoted the film.

A month or so ago I was sent a copy of a wonderful new film, Citizen Autistic, which is educator/filmaker William Davenport’s second documentary feature. Citizen Autistic examines “the growing autism rights movement and the people on the frontlines who are fighting for autistic individuals to have a place at the table when it comes to framing the global dialogue about ASD issues.”

So now I have a copy of the film… and Lei has a copy she purchased for her Autism Acceptance Library. (Yes… Lei is fabulous: she started her own library… which you can read about here.)

And since we both loved it, Citizen Autistic seemed to be the perfect film for our next livetweet.

We think this has all the makings of a really positive online community event, and we are also quite taken with the accessibility of this – because people can participate from all over the world – right from their homes. This accessibility is even better because Citizen Autistic is currently available for free in the US on Hulu (*see note below).  And… of course, ultimately, we are signal boosting and amplifying a really important documentary that focuses upon and explores Autistic activism and issues of social justice and human rights, that we hope will be more widely seen because of our collective efforts .

We invite you to join us for the livetweet to bring positive attention to an important film. And… wonderful news, William Davenport and Cinema Libre‘s, Sean Flanagan, are going to join us! It will be really magnificent to have the director/producer/writer/editor join us.

And, hey… ya nevah know who else might show up…

We are planning to have the synchronized online screening and livetweet on Monday, January 19 at 6:00 PST, and we will connect and coordinate using the hashtag #citizenautistic.

We hope you will join us in viewing and livetweeting Citizen Autistic and help us to support and amplify/signal boost this important film.

*Note: for those of us not residing in the US, it appears that a digital copy of the film can be “rented’ for 72 hours for 2.99… https://vimeo.com/ondemand/citizenautistic/111797242

And here is Lei’s post about our live tweet.

Related  Links:

Facebook:
https://www.facebook.com/citizenautistic

Website:
Citizen Autistic directed by William Davenport, Documentary Film Website

Hulu:
http://www.hulu.com/watch/724988

DVD sale page:
http://store.cinemalibrestore.com/citizen-autistic-dvd.html

Screen shot 2015-01-06 at 1.45.02 AM

_________________________________________________________ 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, Activist, Autism, Boycott Autism Speaks, Citizen Autistic, Neurodiversity, Vectors of Autism, William Davenpost | Tagged , , , , , , , , , , , , , , | 8 Comments

#BlackLivesMatter: Teaching My Son About White Privilege and Intersectionality

Our few days in Washington, DC were rich in so many ways… and it will likely take me a while to capture and pin the words of even a few of our many experiences to the page. So now I find myself sorting these in my head – the things that resonate – the things that matter most – and I am evaluating what is worth sharing, and what I might let slip away from my experience-capturing-pen, to be held instead solely by H’s and my memories.

I often find myself considering my role as the mother of this young man, and the intersections of our lives and our interactions with each other and beyond. I feel a responsibility to raise my son to be caring and sensitive and to have an understanding of his experience of the world and the way his experiences are similar and dissimilar to others. I want him to understand his rights and how these go hand in hand with responsibility – and how he is privileged with certain things because he is white and male and Canadian, and how he may be marginalized or challenged or dismissed in other ways because he is Autistic and otherwise Neurodivergent.

It is important to give him the opportunity to understand the impact of what it means to be disabled by a society that is not accommodating, and to see that this is societies’ shortcoming – not his, and to see the similarities and parallels of other social injustices that limit access and opportunity, such as prejudice and classism, and the effects of poverty and racism – and the intersectionality of so much of this.  I want him to understand that none of this is fair, and I hope to give him opportunities to consider how the edges of his experience interact with others – the things we share and have in common… and big picture – how we can work together to rail against injustice to make this world a better more loving more supporting and caring and accepting place for everyone.

Sometimes opportunities present themselves unexpectedly… and these things that might seem quite small in spur of the moment, turn out to be about the really big important things…

That happened a few times at TASH… and here is an accounting of one of those times.

Our wonderful friend, Emily Titon, H and I decided that we should head out one night to support the #BlackLivesMatter protest that was making its way through the streets of DC.

H and Emily at the Metro waiting for a train.

H and Emily at the Metro waiting for a train.

According to Emily’s Twitter feed was just a few blocks or maybe a Metro ride (or two) away. H had expressed a wee bit of reluctance before we started out, but when we assured him that we could leave if he felt uncomfortable at any time, and he was good to go.

As we were tracking the protest, we had the opportunity to talk about the reasons for the protest, and about racism, and white privilege, and other important concepts whilst riding on the Metro…

And at union station…

And climbing certain monuments…

Screen shot 2014-12-15 at 9.22.36 PM

And attempting to ring the freedom bell… among other things…

P1100428

#BlackLivesMatter, Washington, DC (December 5, 2014)

And though it took us a while, we finally located the protest we began to walk with the other people, and we were welcomed.

We were invited to join the people marching and chanting, which is important to note I think – because though we were there to support this civil rights movement – we were not there to co opt it.

H was proud to be taking action and lending his voice and his presence to this action. I felt the same way. #BlackLivesMatter

H on the steps of the Art Gallery with other protesters in DC (December 5, 2014)

H on the steps of the Art Gallery with other protesters in DC (December 5, 2014)

“Tell me what democracy looks like?
This is what democracy looks like!”

The contrast of participating in a protest like this in DC and that the need for this action co-exists in the same place, the same country, that proudly waves its flag of freedom and decries injustice on a global scale was an irony that was palpable.

I felt the metaphorical shadow of the history of this place and of the iconic monuments, cast upon us in a way that has me wondering at the missing fidelity to the concepts of civil rights and social justice and democracy.

“It is our Duty to Fight. It is our duty to win. We must love and support each other. We have nothing to lose but our chains.”

The next day H and I discussed different aspects of what we heard and saw and experienced the night before. When I wondered aloud whether H thought we were brave to participate in the #BlackLivesMatter protest surrounded by a rather daunting police presence… he reflected:

“No… we were not brave. Because we are white there was no risk… The black people there were brave.

We were not brave – we were supportive…”

White privilege… Social justice… Human rights… Speaking up… Taking action… Democracy… Racism… Intersectionality… #BlackLivesMatter

P1100471

H pondering the Lincoln Memorial the following day…

Please check out these powerful related articles:

http://intersecteddisability.blogspot.ca/2014/12/i-cant-breathe.html?spref=fb

http://wellexaminedlife.com/2014/11/26/dear-white-people-ferguson-protests-are-a-wake-not-a-pep-rally/

http://www.huffingtonpost.com/julia-craven/please-stop-telling-me-th_b_6223072.html

http://www.washingtonpost.com/blogs/dr-gridlock/wp/2014/12/05/protesters-march-on-17th-street-nw-no-street-closures/

http://gentlemangustaf.com/2014/12/04/the-subtle-racism-of-post-racial-activism/

http://bendstowardjustice.tumblr.com/post/104742740875/dear-white-protestors

____________________________________________________________

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)   

Posted in ableism, Activist, Autism, perspective of others, prejudice, privilege, social justice, TASH | Tagged , , , , , , , , , | 1 Comment

Cara on TASH: A quick overview

So many things have happened during the last week. H and I have had amazing adventures and the opportunity to connect with so many wonderful people in Disabilites and Neurodivergent and Autistic communities. The lovely and effervescent Cara Liebowitz is one of those fabulous people, and she has given me permission to publish her words here:

As I leave DC, I reflect on the things I learned at TASH. In no particular order:

1) The combination of the loud volume of my voice, the particular cadence of my voice, and my New York accent make my voice extremely recognizable, which is handy for my faceblind friends.

2) Neurodiverse young people are the best. Particularly Emma and H. I think a youth caucus should be started at TASH. Also, I am saddened that in many circles, I am no longer considered a youth.

3) This may be the most important one: I am more comfortable, many times, with neurodiverse people of all variations than I am with other CPers. At TASH, no one told me that the way I talk or the way I move/express excitement or fatigue was wrong. No one told me I was too loud, no one told me I was interrupting, and no one told me I needed to shut up, except in the very very nicest of ways when it was absolutely necessary. That means a lot.

4) Related to that, flap!clapping is the best thing ever and I love that everyone has their own unique way of doing it. My version is particularly spazzy and often involves my entire body.

5) The Social Model of Disability in Education panel with Ibby, Leah, and H brought me to tears in a good way. It felt like it was my entire life and all my experiences wrapped up and put in a panel. I hope that H’s “Dear Teacher” piece will be posted online so I can send it to all my teachery friends!

6) Leah’s demonstration of shoe tying during dinner was, I think, the highlight of many people’s TASH experiences.

7) I would pay a very large sum of money to have Ibby as a professor.

8) Emma is a future pop star. She’s even got the moves.

9) Interdependence is a reality, and a wonderful one. I saw so many people helping each other and understanding each other’s access needs.

10) On the flip side, TASH and the hotel themselves were shit with accessibility of all kinds.

11) Ibby and Kerima are tied for the people in my life who give the best hugs.

12) I am now the proud owner of a beautiful wand, thanks to H. My goal is to make a cosplay outfit specifically so I can show off my wand. Neurodiverse geeks unite!

Please be sure to check out Cara’s blog That Crazy Crippled Chick

CaraWithWand.jpg

A young white woman using a power wheel chair is smiling, and holding a wooden wand in the air with her left hand. A TASH Conference book is held her right hand, resting on her lap.

_________________________________________________________ 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)

Posted in acceptance, Activist, advocate, Autism | Tagged , , , , , , , , , , , , | Leave a comment

Gathering at TASH and The Magic People Map

Before the TASH Conference, I was working this an idea to create a sort of People Map for H, so that he could be a bit more ready for the peopleing and could begin ahead of time to see faces of people he will meet and match them and connect them to things he knows about them as my online friends.

Amy Sequenzia: Magic Card

Amy Sequenzia: Magic Card

I was thinking this would be a way to frame it and support him with the visuals for people and a little bit of familiarity ahead of time about what is important for them… and also it would let me sit back and not be the over-prompting anxious mom from hell (which is very not good for anyone).

Lei Wiley-Mydske: Magic Card

Lei Wiley-Mydske: Magic Card

And then I thought more about the people map and decided to explore making Magic the Gathering cards for each of these people, because he is familiar with the game and I wanted to match the support to be useful for H to help him navigate the conference… and I thought it would be fun (and infinitely cooler).

My intent was also to use this to help him be aware and frame his response in context. I also thought it would be a wonderful way to connect our next generation… and help them to build a sense of community – in a way that builds understanding and acceptance for each other that could be quite powerful.

Emily Titon: Magic Card

Emily Titon: Magic Card

So I ended up making a set of 24 cards for H (and a whole bunch of other people) and I must thank my friends so so much for their enthusiasm (Kassiane and Emily) and their cutting skills (Corbett ♥) and for being so supportive and open to my wild ideas – I appreciate your trust and encouragement.

And – as I was trying to maintain my momentum on this little project, I was also working to front-load H with information about TASH. I knew he would be more comfortable if he had information about where we were staying and with whom, and who he would be meeting, and more. This is safety for him. It is calming. We can make a situation familiar before we encounter it, and when H can focus on understanding the needs and differences of others – beyond himself – this is partnered with a certain calming effect as well.

Kassiane Sibley: Magic Card

Kassiane Sibley: Magic Card

So we had been talking… a lot!

One of the things we discussed was that some people he would meet might communicate differently. H seemed to take this in stride and I was left wondering at how easily he accepts this (though perhaps admiring is a more accurate word).

We were in the car when we discussed this part, so I couldn’t see his face, but I could imagine a raised eyebrow that I was making such a big deal out of something so inconsequential.

Oh… but I love his attitude.

Purkinje: Magic Card

Purkinje: Magic Card

Then our conversation shifted to how people are sometimes judged by others by their ability to communicate with spoken words, and we moved to the notion of presuming competence, and his interest was noticeably piqued:

Is that why Henry [Frost] had to fight to go to school? Because his words are not spoken??

He knew that Henry had fought for this right – but until this moment, H hadn’t fully understood why…

That is so ableist!

And that ^ THAT RIGHT THERE ^ was the first time I have heard H use the word ableist.

Ibby Grace: Magic CardCan we freakin’ see how easily this kid gets presuming competence, the need to accommodate others?

This comes so naturally – effortlessly!

My Autistic son’s attitude of acceptance is one of the spectacular things he has in common with my Neurodivergent friends.

And it makes my heart sing!!

Related post:
http://theautismwars.blogspot.ca/2015/01/neurodivergence-and-representation.html?spref=fb

_____________________________________________________________

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)   

Posted in ableism, acceptance, Activist, Anxiety, Autism, scaffolding, support, TASH, visual strategies, visual strategies and supports | Tagged , , , , , , , , , , , , | 5 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

Forward and back…16 years of Ausome!

This fabulous young man turned 16 today…

H16.jpg

It was a day of looking back and looking forward… a low-key, laid-back day with very few demands. In reality, today was a sort of culmination of small birthday events that have been occurring for about a week; a spreading out of fun and peopleing that works delightfully well for our family.

And to be honest, I am soaking in that slower pace this weekend – getting ready to take a run at the hill as H and I are heading to TASH’14 in Washington, DC, in a too rapidly shrinking amount of time. I am holding some resources in careful reserve; both excited like a little kid waiting for a party to begin, and as usual, a bit panicked about how we will ever be able to do all the things we need to do to be ready to go.

I trust that it will come together…

H20Months.jpgAnd in an amongst all of this, I am reflecting that this beautiful little boy, pictured here at 20-months-old, is now a fabulous young man of 16.

He takes my breath away.

And… I can hardly believe that in less than 2 weeks H and I will be co presenting at TASH with the wonderful Elizabeth (Ibby) Grace of Tiny Grace Notes.

Our session is titled: Social Model of Disability: Reframing Disability In Teacher Education Programs and Classrooms. You can read about it here, but the gist of it is we will share the value and importance of reframing disability as part of the natural diversity of human experience, and examine how this can inform our practice and support of those who experience the word differently.

Attending and participating in a conference like TASH is going to give H the opportunity to meet so many activists in Autism and Disabilities communities, and also quite a number of other Autistic youth. The timing for this for H could not be better, and though I know that I should not just be expecting him to follow in my footsteps, nor should I be pushing him, I cannot squelch that kinda-hoping-feeling that the spark I see in him will be kindled into something larger.

I have great hope for this next generation’s ability to carry on the work that so many Autistic activists are doing to make things better, and to continue to rail against stigma, and fight for social justice and human rights for those who are less privileged.

I am endlessly influenced by my Autistic and Disabilities Activist and Advocate friends…
and then I influence H…
and too…
he influences me…

So, ya… tonight we kicked back and watched the 80’s flick, Fright Night, which was actually surprisingly good. I should probably be embarrassed at the way my child is influencing my tastes, but I am wearing my growing appreciation of horror and all-things-Zombie with a certain pride. To me this is an measure of time spent together and of a willingness to learn about his interests.

Forward and back… yes…

It was just past 10:20 when H went to bed tonight, as that was the time he was born and he felt it wasn’t truly his birthday until that moment. As the time came, he hugged me confidently affirmed, “Now I am 16. I love being me!”

And my heart soars…

____________________________________________________________

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)   

Posted in ableism, Advocacy, Autism, Autistic, B films, Parent, privilege, Rail Against Stigma, Space and Pace, TASH | Tagged , , , , , , , , | 5 Comments

Leaning into my Hypocrisy

Leaninginwatermarked.jpgSometimes the things I know to be right and true, the things I aspire to, do not come easily to me in the tired-out end-of-the-day moments.

Those are the times when I may not be at my best: my patience may be worn thin, and I may feel the tempting lure of what seems like a shortcut… one that ends up just making things more complex and unruly.

Tonight was one of those nights.

I was rushing H to get to bed – and he was yelling at me for rushing him. It did not go particularly well…

But H called me on it:

I am trying to advocate for myself here. I need you to listen to me.

I am having a hard time listening because you are yelling at me and I don’t like to be yelled at.

Well, I feel I have to yell because you are not listening to my message!

Okay… let’s connect – I am listening…

You are teaching me to advocate – I want you to listen to me and hear what I am trying to tell you.

You are right. I am listening.

I don’t like it when you rush me. I feel pushed.

You are right. You don’t like to be pushed. I don’t either.

You were not listening to my feelings.

Yes, H, you are right about that too. I was listening to your tone and feeling upset that you were talking to me in an angry way.

Did I sound angry?  I didn’t mean to.

I know… and I didn’t mean to not listen. We are both learning here and I think we are getting better at this. We might make some mistakes – and that is okay… You did a great job of telling me how you are feeling. I will try to do a better job of listening.

I know there are other layers here… layers that I am only beginning to see and understand. There are depths to ableism that I do not fully see – because no matter how determined I may be to fully understand – I approach from a point of privilege.

I am developing a deeper awareness of this as well.

I get this… and yet I know I don’t… not fully.

To claim that I do would be insulting: it is not my experience – I cannot fully understand.

It has me moving more cautiously… and checking my words carefully.

Big picture… H and I concluded the exchange with both of us feeling heard and respected and understood.

I appreciate H for being patient with me… for pointing out my hypocrisy… and for second chances!

BeFunky_Ralph Waldo Emerson.jpg____________________________________________________________

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)   

Posted in ableism, acceptance, Advocacy, advocate, Autism, self-advocacy | Tagged , , , , , , , , , | 6 Comments