In this house…

In this house we do acceptance ❤️
April 2017… Bring it!

Image : Text in a variety of font styles and sizes reads: “In this house we do parallel play – We give each other space – We have time to delve into our own interests – We unashamedly spend a tonne of time online – We stim like it’s nobody’s business (’cause it aint) – We love each other for our authentic selves – Because in this house we do acceptance!!” (Watermarked: Thirty Days of Autism: Leah Kelley)

 

 

 

Update: #IveBeenRedbubbled Eeeeee!

Check this out: you can support the Ed Wiley Autism Acceptance Lending Library and get this image on a thing if you so desire…

Here is the link: https://www.redbubble.com/people/ewautismlibrary/works/25918833-in-this-house-by-leah-kelley?asc=u&ref=recent-owner

You are also welcome to print the jpeg image from this post (with attribution) for personal or professional use in home/office/classroom. ❤️

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

© Leah Kelley, Thirty Days of Autism, (2017)

Posted in acceptance, Autism, Autistic, neurodivergent, Neurodiversity, stim | Tagged , , , , , , , , | 2 Comments

Behavior Plan For Parents of Newly Diagnosed Autistic Children

Behavior Plan For Parents of Newly Diagnosed Autistic Children:
  by Lei Wiley-Mydske

Your feelings about autism are constructed by living in a world that fears and stigmatizes disabled lives.  Your distress about an autism diagnosis are most certainly because of these unhealthy messages.  Please remember that your behavior in regards to your child’s diagnosis is a choice.  Signing this behavior plan means that you will always put the dignity, autonomy, and love for your child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.

  • I promise to never use my child’s most vulnerable moments for sympathy or to “raise awareness”.   I recognize that I am my child’s safety net against an often hostile world.  When I feel like sharing, I will ask myself if this is something that I would want others to share about me.
  • I will never blame autism when I have a hard time parenting my child.  Parenting is stressful at times, but rewarding as well.  This is true for ANY child and I will recognize this.
  • I will prioritize the voices of Autistic people over the “experts” as I recognize that Autistic people are the ultimate experts on their own lives.
  • I will throw out the myth of a “developmental window” and acknowledge that my child will grow and learn in their own time, in their own way with my love, guidance and nurturing.
  • I will never apologize for my child being openly Autistic.
  • I will look at every therapy offered to my child with a critical eye.  I will ask myself what is the desired outcome?  Is it supportive or is it attempting to change my child’s neurology? I will never force my child into therapies that vow indistinguishability or that seek to “fix” or promise a non-Autistic version of my child.
  • I will embrace the neurodiversity paradigm and celebrate my child as a beautiful part of the wide and diverse spectrum of humanity.
  • I will learn about the social model of disability and confront ableism when I see it.  I will learn about the disability and autistic rights movements and use my privilege to further the cause.
  • I will learn about Autistic culture and find Autistic friends, not just for my child but for me as well. I will  promote acceptance and lead by my example.
  • I will learn about identity first language and show my child that I am proud of their Autistic identity.
  • I will NEVER say that I love my child but not their autism.  I will recognize that autism is an integral part of who they are and shapes how they view, process and experience this world. I will love every part of my child.  I will never teach them shame  or internalized ableism.
  • I will presume that my child is competent and understands more than may be apparent. I understand that communication is more than speech and I will support my child’s communication in any form. *
  • I will never fight autism, but I sure as hell will fight for my child’s right to be exactly who they are in this world.
  • I will recognize that I am only human and I will make mistakes along the way.  I will forgive myself and do better.

Image: Green background with dark text that reads: Behavior Plan for Parents of Newly Diagnosed Autistic Kids https://goo.gl/WPpnrp autistictimestwo.blogspot.com

 For a printable version of this Behavior Plan, click here.

Image of printable version of this Behavior Plan – by Lei Wiley-Mydske ( https://drive.google.com/file/d/0B6Y4b9-mOvynb01yclh4bWZKWjA/view )

This article is shared here with the permission of the author, Lei Wiley-Mydske, and was originally published at We Always Liked Picasso Anyway. Please check out the other amazing posts there, and if you are in a position to do so, please consider contributing to support Lei’s amazing work at the Ed Wiley Autism Acceptance Lending Library (which you can read about here).

Thank you, Lei ❤️

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

© Leah Kelley, Thirty Days of Autism, (2017)

Posted in ableism, acceptance, Autism, Autistic, Diagnosis, neurodivergent | Tagged , , , , , , , , | 7 Comments

Love more loudly…

Wednesday morning after the US election my sister, Michelle, shared:
“What I will tell my children this morning…?  It’s not enough to be kind and believe in the good. We must love more loudly. We must make inclusion thunder. We must speak up! Show up! And scream for what is right. Silence is the enemy!!!!”

And now I am wondering about what we need to show our children…

What if they see us taking action?
What might they tell their children someday of our actions today??

I hope that my children will see that I am gutted…

That they will see me wipe my tears…

And in the midst of a mind reeling and wondering at how this can even be…
they will see me take a deep breath, square my shoulders, dig deep for the strength to continue to stand up for what I believe.

There is work to be done… far more than I had imagined.

And what has been revealed about the level of hate and oppression that is centred – not merely at the margins, as we hope/expect – well it is shocking and shakes me to my core.

Those of us who are social justice activists trust that we make a difference. We understand the work is endless… and we know this. But this… this is a waking up: a horrific realization that we have much more work to do than we ever could have imagined.

I am scared for the world.

I am terrified for my friends.

There is work to do… and so the activist in me will lean in to the fear.

I am sad and scared – but I recognize my privilege and I am committed to keeping my shit together so I can use that privilege and leverage it.

Perhaps my son will lean over, curious to see the messages I am sending to my friends close across the border and far away, and glimpse snippets of my words. Perhaps my son will ask me what I am doing and I will read aloud to him bits of my messages.

“I am checking in… sending you my love and care and best thoughts.
I recognize my privilege, and that it has just been revealed to me how much I perhaps did not see. That a stance of this much hate shocks me so, tells me I have been insulated and protected by my position.”

We need our children to be able to look to us as examples of how to stand up against bigotry and hate, and we need to show them that we are all in this together.

They need to know of unity by our action –  not by our willingness to acquiesce but rather by our commitment to stand against oppression. We need to show them how to be there for others because ending oppression is a collective responsibility and it affects us all.

And yes… the reality is that I am uncertain what to do – so I am reaching out with messages to people I care about so that they feel that connection and care…
I don’t really know what else to do right now… aside from that and making a commitment to continue to work together with people to make things better…

“Checking in and sending love…
I wish I had better words…
I am so sorry…
I appreciate that you are in the world…”

I am declaring my commitment to continue to work together with others to fight oppression…

“Checking in… letting you know I care…
This is terrifying… and it makes sense to be afraid…
I am here… and I am ashamed that I didn’t understand how mainstream hate was… and I understand that this is pretty revealing of my privilege…”

And now… those of us with the privilege of safety and security that we get by being white, or cisgendered, or straight, or university educated, or employed, or housing-secure, or not-disabled, or male, or… ??? – we need to step up and speak up and give our children the courage to do so as well.

Action, reaching out, holding tight to what we believe because lives depend upon it; this is what hope looks like…

Our children need us to teach them how to stand up to hate…
And how to love more loudly…

Michelle's quote

Image: Background photo of water and islands in the distance all in shades of blue. Black text reads: “It’s not enough to be kind and believe in the good. We must love more loudly. We must make inclusion thunder. We must speak up! Show up! And scream for what is right. Silence is the enemy!!!!” Watermarked Thirty Days of Autism: Leah Kelley

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

© Leah Kelley, Thirty Days of Autism, (2016)

Posted in ableism, acceptance, Activist, Collective Responsibility, inclusion, privilege, Silence, social justice | Tagged , , , , , , | 1 Comment

Autistics Present: A Symposium on Autistic Culture, Identity and Transition

Sooooo… I have registered to attend  Autistics Present: A Symposium on Autistic Culture, Identity, and Transition (High School, College & Career) on October 22, 2016: an exciting conference being organized and hosted by Bellevue College’s Autism Spectrum Navigators, a program of the Disability Resource Center, in partnership with the Autism Women’s Network.

Autistics Present Conference Flyer (Text linked here: http://www.bellevuecollege.edu/autismspectrumnavigators/autism-conference/ )

Image: Autistics Present Conference Flyer (Text linked here: http://www.bellevuecollege.edu/autismspectrumnavigators/autism-conference/ )

I am so excited about this conference – and I love that it is actually one at which I am NOT able to participate as a presenter. This is a reclamation of space and an important and political act of decolonization of Autistic voice. I need to be there to support this – to witness – to be along side as a co-conspirator and as a privileged professional/parent who can too often be (mis)granted ‘expert’ status on the experience of being Autistic – a Neurodivergence I do not share. This is a chance to show up – and be quiet – and support the amplification of the people with the lived experience and acknowledge that they are experts in their own lives.

I asked Sara Sanders Gardner, the Director of the Bellevue College Autism Spectrum Navigators Program, if she could answer a few questions about the conference:

To begin can you introduce yourself and share what is important to know about you?

I’m Sara Sanders Gardner – I was diagnosed as autistic fourteen years ago at age 41. Learning that I was autistic came as a great relief to me, as suddenly so many things made sense and I started to understand myself for the first time.

Is there anything else that is important we know about you?

My intense interest in learning about autism led me to my current work! When I lived in Southern California, I worked with families of autistic children who were my son’s age – teaching parenting classes, running support groups, and advocating at IEP meetings. When we moved to Seattle for my son to attend college, I was drawn to a pilot program at Bellevue College that was looking into how to best serve autistic students. When the pilot program was over, they retained me to develop and direct what is now the Autism Spectrum Navigators program, serving over 100 students!

The Autistics Present Symposium is a spectacular and ground-breaking concept – one that I have heard people speak of as a longed-for possibility – but you have made it happen.  Do you remember the moment you decided to undertake this project? Can you share what first sparked the idea for the conference and what makes this so important?

It came out of my desire for there to be a conference that was uplifting and positive in its representation of autistic people. I love to learn about autism, and want to stay current in the field, however, whenever I attend a typical autism conference, I come away drained and feeling down because of the microaggressions that are spoken against autistic people, and because of the focus on ‘helping autistic people “fit in”. In addition, I wanted to provide a conference for professionals, educators, and others to learn from the actual autism experts – autistic people themselves. I think we’ve accomplished that with this conference lineup of speakers!

Is there anything else you would like to say or that you think is important to add?

Yes! Although I get “credit” for designing and developing the Autism Spectrum Navigators program, I couldn’t have done it without the influence of autistic people from across the world. They, along with our students, inform my thinking and decision-making regarding program protocols. When the program first started, I had quite a bit of internalized ableism, and through the years, I’ve been able to move further and further away from ableism, to the benefit of the program and our students, due to the leadership and activism of my autistic peers. Autistic community is so important, and we need access to it – another reason for this conference, and for the ASN program!

I appreciate Sara sharing here and also for her work and vision in making the Autistics Present Symposium a reality. There are still a few days left to register for spectacular and unusually inexpensive conference (the deadline is October 17th) and you can do so here: http://www.bellevuecollege.edu/aut…/conference-registration/

And seriously, check out the impressive lineup of speakers:

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Image: Autistics Present: Speakers poster (Text available here: http://www.bellevuecollege.edu/autismspectrumnavigators/conference-schedule/ )

Another thing that thrills me… like seriously gives me goosebumps… is that my son, H, and Emma Van der Klift are the co-presenters of “The Right to be Autistic: Reframing Autism as Neurodivergence.”

My heart soars! ❤️

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

© Leah Kelley, Thirty Days of Autism, (2016)

Posted in Autism, Autistic, Autistics Present Conference | Tagged , , , , , , , , , , , , , , , , , , | 2 Comments

You, yes you, need Autistic friends

The following is a guest post by of  Radical Neurodivergence Speaking

Intended audience: parents of Autistic kids. Though obviously everyone needs Autistic friends.

So your child was just diagnosed with autism. Breathe. Breathe deeper. Relax. It’ll all be ok. But you have some work to do.

The first thing you need to do isn’t find therapists. It isn’t commiserate with other parents. It isn’t become an AAC expert (though all of these things have their place!). It’s something not in the autism introduction packet: you need to connect on a human level with adults like your child. You need to go make some Autistic friends.

I don’t mean a mentoring relationship, though those are extremely important and I am a big fan of mentoring (and mentoring your child & being friends with you are not mutually exclusive). I definitely don’t mean “translate my child to me” (which is not a friend thing particularly). I mean find local Autistic adults with whom you have common interests and connect as equal human adult people.

There are a whole lot of reasons this is the best thing you can do for your child:

First, and possibly most importantly but mileage varies: your child is noticing things. If you go through a mourning phase, or a difficult adjustment phase, your child will notice and possibly blame himself. Your child may not have the vocabulary for it, but at some point he will figure out that he isn’t the son you planned for and dreamed of, and he might blame himself for that. We figure it out when we’re a disappointment, even if you do your best to hide that you’re having a hard time. Many Autistic children get in our heads, accurately or not, that our parents only tolerate us because they’re stuck with us.

Your child needs to see you choosing to be around people whose minds work like his. It’s much harder to think your parents hate you and hate your brain when they seek out the company of people who think like you. Seeing the adults who are dearest to you–and like all children, Autistic youth default to loving their parents–seeing them find someone who reminds you of you? That’s supremely important. Do not underestimate the effect this can have, just knowing that your parents would choose to be around you even if they weren’t “stuck” with you.

Another reason: many disabled children never meet an adult with their disability. You might be surprised, and a bit saddened, at the conclusions we come to. Some folks come to the vague idea that we’ll outgrow our disabilities (and when there’s no sign of that, we’re reminded that we’re disappointing, because you can bet we’re getting that message from someone in our lives). Or, I have friends who concluded that their disabilities were fatal. That’s a recipe for severe anxiety, thinking that you’re dying but you feel fine and no one has felt the need to talk to you about your inevitable demise. We need adults like us; this anxiety is completely unnecessary.

Your child also needs role models. She may not be able to fill your shoes, or Uncle Bob’s or Auntie Bev’s or her teacher’s or those of any adult in her immediate sphere. But my shoes may fit, or those of another adult Autistic. All children need people in their lives who they can realistically emulate, & Autistic children are no different. I was pretty young when I knew the adult-woman things being modeled for me were just not going to happen ever–and alternatives were never presented. I was surrounded by folks who were similar to each other and not much at all like me. This is stressful. Making your own make is hard, and it’s harder when everything you do is wrong (the premise of somewhere between many and most autism therapies, and a message also sent by peers, random strangers in the store, other adults, etc). Once again, anxiety. It’s easier to believe you aren’t Doing It Wrong when you know happy adults who took similar trails. Knowing options for the future? Seeing unconventional but fulfilling adulthoods? So important.

If you have culturally connected Autistic friends, your child also will have a head start on a connection to the community. As he grows older, he will have a life apart from your family. This is a good thing and an essential part of growing up. The Autistic community is his birthright. We as a general rule (can’t speak for everyone) welcome friendly parents, but your child is one of us. It’s wonderful but also overwhelming and scary to discover a place where you’re “normal” when you’ve never been, especially all alone. Even good overwhelm is unpleasant when it gets too big. You can make this less of a shock by having Autistic friends. “I’m not alone” doesn’t have to be an adulthood revelation; it can be a given. Your child deserves to grow up knowing that he isn’t alone, that there’s a whole community that will embrace him because he’s one of ours. The gift of growing up with this knowledge? I cannot imagine it having anything but good effects.

Also, we’re awesome. Autistic people are loyal and hilarious, among other things. We’re good friends. We might provide insight to things about your kid that you never thought of, completely on accident. Your way of looking at the world may accidentally clarify things for us, too. But in my experience, Autistic people are the funniest people on earth, and the most dedicated to making sense and to fixing things that are not right (admittedly, my sample might be skewed, but I also have a very large sample size). That’s how the people I hang out with roll. Making friends with us isn’t just good for your child. We’re good for you, too, and you can be good for us. A true friendship is a mutually beneficial relationship. We have a lot to offer each other.

So breathe, put down the pamphlets about all the different therapies, breathe again, and look in your networks for some Autistic connection. It’ll make your life, your child’s life, and some local Autistic’s life, better.

~

Thank you, K, for your permission to share this important post.
I have the best friends.

Also – I am pretty sure that my son knows that a good many of the people I love most in this world are Autistic.

"Cosplay Stargazers" Image: H looking downwards, dressed in vintage wool trenchcoat, Dr Who scarf and owl hat and K standing behind, mostly hidden by darkness and a hooded cape over a red/orange jacket. K appears to be holding a wooden staff. The background is night black with lighting from below.

“Cosplay Stargazers”
Image: H looking downwards, dressed in vintage wool trench coat, Dr Who scarf, and owl hat.  K is standing slightly behind, mostly hidden by darkness and a hooded cape over a red/orange jacket. K is holding what appears to be a wooden staff, but is actually a telescope. The background is night black with lighting shining from below.

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

© Leah Kelley, Thirty Days of Autism, (2016)

Posted in acceptance, Activist, Autism, Autistic, neurodivergent, relationships | Tagged , , , , , | 5 Comments

Proud to be Myself: An Autistic Person on Garry’s Mod

I got home late from work today, lugging my books and bags and laptop and some likely-less-that-healthy Chinese food for H and me to have for an easy dinner, as Craig had a gig.

H greeted me at the door to help me with my bags and he was standing tall with pride as he excitedly told me, “Mom, I was an advocate for myself and for Autism today. I advocated on Garry’s Mod [an online sandbox PC game] and they listened to me. I am really proud of myself!”

I asked H if he would like to tell his story and post it on the blog, and without hesitation he agreed, “Yes, I want people to know about this and I think what I did was really ballsy, but I think other people can do this too.”

Here is H’s story:

Today I was playing Garry’s Mod and I joined this server and it looked quite promising at first, but when I scrolled through jobs I saw that one of the jobs was ‘Autistic Person’. When I looked at the description I was really offended, because it said “you listen to Drake and cry yourself to sleep and have random autistic outbursts.” I thought it was really ableist, so I then called for an admin. I told the admin that I found that is offensive and that I myself am Autistic, and that I am an advocate for Autistic people. I was asking them if they could remove that from the server. And then two other admins got involved. We had a small meeting. I told them being Autistic is something you are born with, like your sexuality… like if you are straight or gay. And I told them about ASAN and that I present at conferences and they listened to me.

I feel really good about myself. They said they will try to get it off the server, and I will be checking in a few days to see if they did anything about it.

Apparently some of the admins are Autistic, and they didn’t really find it offensive the way I did, because I guess they’ve grown used to it.

I am trying to build up understanding about Autism in the world and spread the word that Autism is not a disease and it doesn’t need a cure.

Just be yourself.

I am proud to be myself.

H - Proud

Image: Side view of H wearing a vintage wool trench coat and his Dr. Who scarf. looking out across the Fraser River at sunset. The light is highlighting the side of his face , and the water looks like liquid gold. Text reads: “I am trying to build up understanding about Autism in the world and spread the word that Autism is not a disease and it doesn’t need a cure. Just be yourself. I am proud to be myself. ” H [Watermarked: Thirty Days of Autism: Leah Kelley]

And a final note of gratitude from Craig and me: We are thankful to have amazing Autistic, Neurodivergent, and otherwise disabled friends in our lives. If it takes a community to raise a child – this one is raising up a fine young man!
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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2016)

Posted in ableism, advocate, ASAN, Autism, Autistic, Disability, neurodivergent, TASH | Tagged , , , , , , , | 3 Comments

Hell’s Gate and The Pumpkin Toss

Last night, on the night before Thanksgiving, we carved pumpkins. Yes, you heard that right!

Image: A jack o'lantern carved by H.

Image: A jack o’lantern carved by H.

And today we travelled up the Fraser Canyon with our good friends – five of us in all.  We each had a pumpkin, that would serve as our ticket for the Hell’s Gate Airtram that stretches across the narrowest most treacherous part of the rocky canyon, through which the Fraser River has carved its path.

And if that is not cool enough – on this day each year – you are allowed to toss the pumpkin from the tram and watch it smash on the rocks below…

It is ridiculous… and spectacular… and amazing!

The arms and bodies of 4 warmly clothed people holding carved pumpkins.

Image: The arms and bodies of four warmly clothed people holding carved pumpkins.

Image: H holding his pumpkin in a parkinglot.

Image: H holding his pumpkin.

 

We weren’t the only ones travelling with pumpkins, though we agreed that this biker’s pumpkin was definitely the most terrifying of the lot.

A motorcyclist holing a frowning pumpkin with a shock of unruly yellowish hair. He told me it was "Donald Trumpkin"

A motorcyclist holding a frowning pumpkin with a shock of unruly yellowish hair. He told me it was “Donald Trumpkin”

 

The lure was irresistible…
And I took about a billion photos… and a rather shaky video.
I will let them tell the story…

Image: H in the airtram - preparing to toss his pumpkin.

Image: H in the airtram – preparing to toss his pumpkin.

Image: H and K looking out at the view from the airtram.

 

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Image: The Hell’s Gate Airtram with pumpkins being tossed out.

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Image: H and friends walking toward the interpretation area on a wooden deck surrounded by trees.

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Image: H and K in front of the Hell’s Gate sign.

Image: A view across the canyon where a trainis visible on the tracks. The red engine says

Image: A view across the rocky canyon with a treed mountainside above. A train is visible on the tracks with a red engine that reads ‘Canadian Pacific’

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Image: H and K walking along railway tracks lined by forest and mountains. The are exploring and H is foraging/hoping to find some bits of metal for blacksmithing.

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Image: The target on the ground below the airtram covered in smashed pumpkins.

And finally, here is a rather poor quality video of the pumpkin toss. I must warn that it is jarring and possibly seizure inducing in the random movements of my camera. Yikes! I will try to get better at this in the future.

❤️ I am so grateful for these people and their friendship!
It was a ridiculously fun and spectacular day!

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

© Leah Kelley, Thirty Days of Autism, (2016)

Posted in Activist, Autism | Tagged , , , , , , , | 2 Comments

Holding Space as Acceptance, Love, and Self-care: One year later…

Posted in acceptance, Autism, Autistic, Death, letting go, Love and Self-Care | Tagged , , , , , , , , , , , , , , , | Leave a comment

Disability Day of Mourning: The Loss of Innocence

A few weeks back I asked H if he would like to attend the ASAN Vancouver Disability Day of Mourning Vigil with me on March 1st, at the Woodlands Memorial Gardens in New Westminster, BC.

He asked what the vigil was for – and then as I explained that it was to honour the memory of people with disabilities that had been killed by their families and caregivers – his intake of breath was audible…

There was a pause…

When he caught back enough air to speak again, he asked in disbelief, “How could people do that… to… their… own… kids… and… family? Family should be SAFE!!”

I responded, hoping like I do at times, that the right words would somehow drop from the sky, “You are right, family should be safe. But you need to understand that some people have families that are not safe, and some people think that the lives of disabled people are not worth living. It is also important to know that this is not okay, and so we are working to change the way people think about disability and disabled people. This is a hard thing to think about and to know about. I am inviting you to come, but you do not have to  – it is up to you.”

H took another long breath in, and then said with finality, “I want to go…”

Over the last few weeks I have been thinking back to when H visited The Woodlands Memorial Gardens, in the spring of 2012 with my mother and me.

Woodlands, constructed in 1878 and finally closed in 1996, was an institution, an ‘asylum for those with developmental disabilities and the mentally ill’ and then later a residential school. It was a place of incarceration, exclusion, dehumanization, and the existence of this institution and the attitudes that went with it, denied those with developmental disabilities the right to be valued for who they were and to included in their families and communities.

I wrote about that then (Ghosts of the Asylum in Spring: A look back at exclusion and abuse). It was just before H attended his first conference with me… and I see it still as a conversation of origin for his advocacy, activism, and sense of social justice:

“This past Sunday, my Mom, H, and I walked through the memorial gardens there. We read the signs – telling about the injustices and atrocities that occurred. A touch of spring accompanied us briefly on our deeply moving trek. The sun came out and stole away a bit of the chill, and the early buds promised something more of the spring yet to come. Today was just a glimpse.

I glimpsed another thing emerging today as well… H’s understanding of injustice.

As we read the memorial plaques – H became increasingly interested and was full of questions.

Who lived here? Who? When? Did they put people with autism here??

Yes, honey – they did…

That’s Horrible!”

Yes…

You mean I might have been in a place like that?!?

Well – families were often told that they shouldn’t raise their children. Lots of people – and even doctors would say that.

They were wrong!!

Mom – I feel sad for those people…

~

Gently – gently…

And now the day is here…

I hope I have scaffolded things so that he is ready…

We looked at the images created by Corbett O’Toole for “LISTENING TO GHOSTS: Making Art about Disabled People Killed by their Families” – and I read him the post from last year, with the words of Norman Kunc and Emma Van der Klift – and we listened to this speech from the ASAN Vancouver 2015 Vigil by Amythest Schaber.

H is deeply, deeply empathetic. He feels things soooo intensely, but he knows I will be there – and we have planned for dinner with our good friends Norm and Emma afterwards.

I think he is old enough to build his understanding of why I spend my time, along with so many others, doing this activism stuff… and to know that there is a place for him at the table… if/or when he wants to add his voice.

H may or may not be an activist like his mom, but he will understand why I do what I do – and that he has a right to rail against negative stigma – and not be beaten down by it.

I do not want my son to accept the shame foisted upon disabled people. It is my job as a parent to support him so that he is proud of his authentic self, and that he understands and embraces that disability is a part of this.

Gently… gently… I hope it is enough…

And then I realize…  of course H is not ready.

How can he be?

I am not ready.

I am not ready to feel the pain of those witnessing with us today… as we all absorb the emotion hanging thick in the air – our hearts heavy with imagining the horrific betrayal of those whose lives we are remembering… the lives belonging to the 400 or more people whose names will be read aloud…

Gently… gently… I hope it is enough…

I know H will be surrounded by a community of people who care about him and who have the skills to help him process and keep him safe.  I would rather plan to share this with him in a well-thought-out way than have him stumble across such horrific information without the scaffolding of love and support.

And then, as we were on our way H said, “Today we are going to pay our respect to people who were killed by their so-called loved ones…”

I reflect… that he is taking this in with understanding…

And I also reflect that is it a terrible thing and I hate it that I have to teach this young man about this…

Gently… gently… I hope it is enough…
I ease my son into the loss of innocence…
Gently… gently…
Making room for love and pride to take the place of hate…

Black and white photo of Emma and Alanna reading the names of disabled people who have been murdered. NOrm and Harrison are listening. The arm of a mourner is visible in the foreground, holding a stim toy.

Black and white photo of Emma and Alanna reading aloud the names of disabled people who have been murdered. Norm and Harrison are listening. The arm of another mourner is visible in the foreground, holding a stim toy.

Black and white photo of the reflecting pool surrounded by a lattice work of white carnations and people who participated in the Day of Mourning. They are gathered around and talking after the vigil.

Image: Black and white photo of the reflecting pool surrounded by a lattice-work of white carnations. People who participated in the Day of Mourning are gathered around and talking after the vigil.

Black and White photo of H looking up at and art installation represent cement walls with the barred windows of Woodlands Institution. This is has been recreated so that it is the same height that the windows would have been for the residents. There are candles and flowers arranged on the window's ledge, and a tree can be seen through the bars.

Image: Black and White photo of H looking up at and art installation represent cement walls with the barred windows of Woodlands Institution. This is has been recreated so that it is the same height as the windows would have been for the residents. There are candles and flowers arranged on the window’s ledge, and a tree can be seen through the bars.

Black and white photo of H (a white male teen with spikey hair, a retro woolen tweed trench coat, a Doctor Who scarf and a messager bag) looking at the 10 page list of disabled people who killed by their families or caregivers.

Image: Black and white photo of H (a white male teen with spiked hair, a retro woolen tweed trench coat, a Doctor Who scarf and a messenger bag) looking at the 10 page list of disabled people who killed by their families or caregivers.

Information and Resources:

The Disability Day of Mourning website provides detailed information about disabled people murdered by their families. http://disabilitydayofmournin.apps-1and1.com/index

Anti-Filicide Toolkit. Available from Autistic Self Advocacy Network. http://autisticadvocacy.org/home/projects/disability-community-day-of-mourning/anti-filicide/

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

© Leah Kelley, Thirty Days of Autism, (2016)

Posted in ableism, Activist, Advocacy, ASAN, autism stigma, Autistic, Boycott Autism Speaks, Death, Disability, Grief, prejudice, Rail Against Stigma | Tagged , , , , , , , , , , , | 13 Comments

“Stop…” A Poem: Disability Day of Mourning 2016

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.

 

              Today I share this poem, originally published in June 2013, to witness and remember the lives of Disabled people killed by their parents and caregivers… 

Stop..
 

Stop
 
These words of tragedy
Emblazoned on notepads and billboards
This epidemic of dehumanization
This narrowed definition of being
Twisted finer and thinner
So that it lacks any sensitivity
So that the words themselves are
A garrote
Cutting into flesh and spirit
 
Stop
 
When words and stance 
are played out deftly
to define other as less
to define different as solely deficit
and are used to silence
This – THIS – is the tragedy
 
Stop
 
My child is burdened with these words
That exclude
And distance
And define other as broken
And are shaped with intent to siphon fear
alchemy-like into big business’ pocketbooks
Words seeded and hooked with the bait of crisis
So the fund$ continue to be reeled in
 
Stop
 
Those who are on your hook
Who take up your fear-filled bait
Feeding hungrily on your emptiness
Your mean lies
They are left empty
And hopeless
Seeing only unmet potential
Instead of the beauty of diversity
This – THIS – breaks this mother’s heart
but at the same time, strengthens her resolve

Stop 

When difference is framed in fear
To stir activity
A call to action
To shore the millions needed to fund
your oft’ wonton cure
And at the same time silences those
for whom they claim to speak
This is not charity
 
Stop
 
The stance of stigma
Whose twisted legacy
Is used justify the pain
The othering
The silencing
The disappearing
The murder
Of people
Like those whom I love best
 
Stop!

Leah Kelley ~ Thirty days of Autism ~ June 2013

Posted in ableism, ASAN, Boycott Autism Speaks, Death, Disability Day of Mourning, family, Rail Against Stigma | Tagged , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments