Let’s talk about language: Is disability a bad word?

(CW – for outdated ableist terms in article)


In my work as an educator and an activist, I have long wondered why it is so difficult for us to use the word “disability.”

Image: B&W photo of teenage H, that captures multiple and shifting images of him. He is sitting on a block type bench and resting against a pillar, with one knee crossed over his lap to support his laptop. He is looking down and focused on his computer in a large open space at a university, as he waits for me to be done in a meeting.

B&W photo of teenage H (2014), capturing multiple and shifting images of him. He is sitting on a block type bench, resting against a pillar, with one knee crossed over to support his laptop. He’s looking down, focused on his computer in a large open university space, waiting for me to be done in a meeting.

The word “special” and the notion of “special needs” are examples of the elaborate linguistic workarounds we have adopted to talk about disability. Historically speaking, the word special was intended to improve the language used to refer to “disability,” replacing more problematic words like “handicapped” and the “R” word, which in their time were designed as replacements for other problematic terms such as “stupid,” “idiot,” “moron,” and “imbecile.” In more recent times, other euphemistic terms like “differently abled” or “handicapable” have come into use. Although intended to push back against stigma, these terms are also problematic, since they remain connected to underlying biases. As many educators now realize, designating disabled people as special has done little to change these underlying biases of “ableism.”

 

SIMILAR TO THE DEFINITION of racism, ableism refers to discrimination and social prejudice against people with disabilities. Such discrimination can be specific and overt toward a particular person or group. Ableism also exists hidden in structures and perceptions that are largely unexamined in our schools and communities resulting in more systemically widespread barriers, including our language. For instance, the way disability is discussed, or excluded from conversations, often reinforces negative stereotypes, shaping attitudes that can limit access and opportunity for students with disabilities, including nurturing a positive identity, developing self-understanding, and the cultivation of advocacy skills.

The language is shifting… but the conversation remains the same.

In British Columbia, we may be transitioning away from the language of special education toward that of diversity. Arguably, this shift is a well-intentioned attempt toward inclusivity and to avoid the language of stigma and discrimination. Framing disability as one aspect of diversity may appear to move in a positive direction. But we must ask the question: is it possible that this shift in language might actually make things more difficult for students with disabilities? And if so, how and why?

Suggesting that students with disability are simply a part of a wider diversity of learners may be true, but we must examine the implications of doing so, ensuring that space and language to explicitly talk about disability happens. We must resist subsuming disability into the broader category of diversity, so that we do not inadvertently make it more difficult to discuss and address the specific issues faced by disabled people. 

I sense unspoken shock that I am insensitive enough to actually say “that word.” Perhaps this reaction is tied to assumptions that equate disability with tragedy, that disabled people are less than, and that to use the word is an insult. I am curious about what might be possible if the term disability were uncoupled from pity and stigma, and the opportunities that might then be created to examine why discussing disability—even saying the word—makes people so uncomfortable. Students with disabilities continue to experience exclusion and discrimination that is different from members of other marginalized groups.

What might be possible if/when the shift to the language of diversity and diverse learners is accompanied with an attitude of inquiry to understand the lived experience of disability-related stigma? How do we ensure that the experiences of students with disabilities are not disregarded, disappeared, or erased, and that the same stigma and barriers are not perpetuated— simply rebranded with a new name? How might we create opportunities to better prepare our students for their futures by including disability history and the disability rights movement in social justice curriculum? Discussing and answering these questions would be a move toward justice. When disability and the stories and perspectives of disabled people are included in the context of human rights and social justice discussions, our understanding deepens and creates space to consider accessibility, accommodations, fairness, and bias— making our school communities better and more inclusive for everyone.

#NotSpecialNeeds #SayTheWord Disabled

Many of the disabled adults I know actually prefer the word “disabled” over the euphemisms designed to avoid the term. Some people are confused by this, because it is counter-intuitive to the discourse and master narrative. However, for me, my family members, and others in the disability community, we understand that we are a part of a broader group with a particular history. Disability is a part of an identity we claim with pride. Yes, we experience difficulties, but we acknowledge that disability is a natural part of the full range of human experience, and we have our own stories.

As someone who identifies as neurodivergent, is the parent of an autistic son, and with many years experience as an integration and inclusion teacher, I’m well aware of the significance of language. A shift away from the notion of special also creates an opportunity to move the discussion toward the idea that the needs of all students are actually the same: the need to have access to education, to belong, to be safe, cared for, respected, honoured, heard and supported to be self-determining. The Ministry of Education is considering categorization and the framing of disability —here lies an opportunity to move in a different direction. It is a profound act of solidarity to interrogate how systems and attitudes have been shaped by avoiding the word disability. What might be possible when there is space in our classrooms to talk about disability, as a normal part of human experience—an identity uncoupled from shame? Let’s have the difficult conversations and examine our attitudes about disability, and re-imagine inclusion in our classrooms, schools, communities—and in our lives.

 

References:

Brown, L., (Last revised fall, 2022) Ableism/Language. [Web log post] Retrieved from:  https://is.gd/ZB67j8.

Cohen-Rottenberg, R., (March 14, 2018) 10 Answers to Common Questions People Ask When Being Called Out for Using Ableist Language. The Body is Not an Apology. Retrieved from: https://is.gd/m17qjL.

Lindemann Nelson, H. (2001). Damaged Identities, Narrative Repair. Cornell University Press.

Trent, J. W. Jr., (2017). Inventing the Feeble Mind: A History of Intellectual Disability in the United States. Oxford University Press.

Please Note: This article was written in 2018, and was previously published in the BCTF TEACHER MAGAZINE (JANUARY/FEBRUARY 2019 ISSUE) HERE and the SFU Faculty of Education Newsletter (January 2019) HERE.

Posted in ableism, Autism, BCTF, Disability, Discrimination, prejudice, Public Education, Special Education, the R word | Tagged , , , , , , , , | 1 Comment

Dysregulated: Excavation and Big Feels

I am sad and oh so dysregulated.

In some ways I don’t feel like I have a good reason – not when I compare what is going on for me with what so many others are currently experiencing in this world.

Perhaps though, it is a layering in with so many other things that tipped the balance for me.

But let me start with a little background…

My family lives on a flood plain, on the far eastern floor of the Fraser Valley (in British Columbia), close to where the mountains converge. Last fall this area experienced catastrophic flooding. We were fortunate that we were spared the kind of damage that made our home unlivable, but the ground water was too much so now we have serious ongoing issues with our foundation.

For a time we had a lake in the backyard and in the basement. The ‘lake water’ subsided, and the weeds and moss and grass recovered. The basement didn’t fair so well.

So then began months of dealing with insurance, a restoration company, and looking for a solution to the actual problem. There is little point in restoration when the cause still exists. The details and frustration and complexities are kinda irrelevant to my story, but needless to say it has been ongoing and stressful, with many moving parts and variables. I have had to learn about groundwater and hydrostatic pressure and more… and then navigate companies with a plethora of (often conflicting) advice on how best to deal with things, which all feels like it is soooooo not my skill set…

Anyway, to move this tale along, we are getting perimeter drainage, which involves digging down to the footing of the foundation around our entire home, including the side of the house adjacent to (and under) the drive way, and the side under the back patio, and the front walkway.

And… this next part is the most difficult for me… the excavation must also be done under the gardens at the front and back our home. The hardy hibiscus, the giant camellia that was given to Craig and me a million years ago as a wedding present, a rosebush given to me by parents at the school where I taught when my son was born, the sprawling lilac with the trailing pink show that is spectacular in the early spring along with the now dormant bulbs of tulips, and hyacinths, and other happy making spring flowers, the peonies I have nurtured, and the perennials I’ve collected, and those ancient bits that predate our 25 years of living in our circa 1957 home – all of them must be removed.

You could ask why I didn’t move some of them? Why I didn’t plan better? I am wondering that as well. Some were simply too large to be relocated, particularly in the heat. I also learned that some of the larger shrubs and trees are probably making the drainage problems worse. And, in truth, I didn’t even think about the bulbs until I wrote that last paragraph – and now I am kicking myself. Gah!!

But shifting and uncertain timelines, and pandemic, and heatwaves, and one of the worst mosquito seasons I can remember, and simply a lack of executive function and not knowing where to even begin, well it made all of that more than I could manage.

On Tuesday, we worked to move some rocks we have collected over the years – precious to us – each one collected and dragged home in the back of the car, or in bulging pockets, that have over time become the drainage under the back yard water taps.

The excavation began yesterday (Wednesday)… and I began to understand that we couldn’t possibly move/save it all…

I didn’t realize I would feel so sad – so dysregulated – so flooded.

So ya… I am letting go… and working through the intensity of big feelings.

And here comes the important part… there are people in my world who GET that this is difficult for me. They are not diminishing my feelings, they are there and offering support. One lovely friend offered to take our labradoodle puppy, Ridley the Wildling, to hang in her yard and play with their dog for the day, since they understood that our yard is now pretty much a danger zone, complete with yellow CAUTION tape, mountains of dirt, and a rather impressive moat (I mean – like if I wanted a moat).

Other friends are so encouraging, and have kindled my excitement to be creative, offering to share bits of their garden’s perennial treasures to plant in the fall.

Sharing that I am struggling is giving people the opportunity to offer support.

Let me say that again…

Sharing that I am struggling is giving people the opportunity to offer support.

That is kinda huge. It shouldn’t be… but it is.

How often have I held things close, gathered my resolve and taken the next step, never sharing the struggle I experience? How much have I hidden away – denied – even to myself?

And the messages that accompany such a hiding are not healthy ones – and there are a variety of reasons behind my thinking.

Part of this is tangled up with internalized ableism and how my determination and fortitude are central to my way of being in the world and to what I feel I have to offer. I wonder at the sense of value that I have claimed for myself, that is too closely entwined with being so fucking strong, and not admitting when I am struggling, even to myself.

I would be appalled at the idea that if someone needed support or help with something that they were somehow less. Should I also be appalled that this is exactly what I do to myself? (That’s rhetorical; yes – the answer is yes!) I have been digging into my double standard, undermining strength…

It is slow work.

I keep finding things hidden away that I didn’t expect, digging down to my own foundations in places covered with gardens or walkways, where I perhaps haven’t looked.

And too, there is an inherent problem in that as a Neurodivergent and otherwise disabled person, covering up when I might be struggling, creates an illusion about the smoothness of my world, including strength and fortitude that is profoundly inaccurate. I struggle – a lot.

I have been intentional about making visible the scaffolds of support I employ for myself when I work with educators or speak to other groups. When I work with teacher candidates, or pre-service teachers, I share my access needs and what I am doing to meet them, particularly around focus and sensory needs. I encourage educators (and others) to share what they do to support themselves, so that understanding access needs might become a part of our practice, and a way of making visible and modeling this for our students. I explain that of course there will at times be conflicting access needs, but that navigating these can create an opportunity for understanding the experience and perspectives of others, and for creative negotiation and problem-solving, in a way that builds community.

I rely on lists – and lists of lists: sticky notes, electronic lists on my phone, in the pages of my old-timey paper planner book, and notes and ideas scrawled on a napkin of a scrap of this of that.

I have a plethora of alarms on my phone, and I use timers (often working remotely alongside friends) as we work to accomplish tasks. Some people call this body doubling, I call it co-momentuming.

I have become pretty open about the supports and strategies I use to get shit done, but when I am upset, troubled, stressed, overwhelmed, or in turmoil, my tendency has long been to keep this to myself. I am intensely private, which perhaps sounds weird for a writer/blogger, but ya… when things get hard… I have hidden it away.

I am also learning that when I share the hard stuff, it doesn’t feel as difficult. Some of the stress and pain seems to leak away and lose intensity. Connection works like that. And of course I know this as a practitioner, and as someone who is adept as supporting social emotional learning, and who has a deep understanding of the importance of completing the stress cycle.

I am taking it out in my yard – working physically to move a few precious plants that I was able to save from my garden, and I am also paddling on the lake (which I don’t think I have written about before, but that’s a story for another time). Movement helps me regulate and process the big feels.

Another important aspect is that I am finding that when I share what is difficult, I have people in my life that offer support. They cannot do that if I hide.

So ya – I am digging into a complex ball of internalized ableism, and internalized capitalism, and maybe even a response to past trauma, that reinforces that I have to control everything and I cannot rely on others. But I am learning…

I am learning that strength doesn’t mean going it alone.

I am learning that I am deserving of support.

I am learning that I have people in my life who are fucking amazing… and I am grateful.

Image: colour photo of rather nondescript 1950’s home with a digger and giant piles of dirt covering the grass in front of it. Trees and blue skies are visible in the background as well as portions of neighbouring houses.
Image: Photo of a 6 foot trench alongside the front of our house, that leads up to the old cement front stairs. This was formerly the front walkway. There is yellow plastic tape with black lettering that reads “CAUTION” cordoning off the area. The tape is upside down, which I find amusing for some reason. I keep reminding myself not to leave out the front door, and may need to post a bit of that yellow tape inside as an additional safety measure.
Posted in ableism, ADD/ADHD, Disability, Disclosure, executive function, neurodivergent | Tagged , , , , , , , , , , , | 2 Comments

Untethered and Shiny Things

I have been so absent in this space for so long as I have been busy writing my dissertation. So yes I have absolutely been writing – just not here.

I am finished that now and working on writing new things.

I have projects that I am planning to share… sometime soon… we’ll see…

And too – I have been contemplating this space and how what I have to say has shifted and moved and evolved. Sometimes I feel the urge to delete old posts as they certainly do not reflect where I am at this moment, but to do so would feel like an erasure of the steps (and missteps) that are a part of my journey.

I want to remember that my learning has been a process… and that I still have so much to learn.

I want to be open to that.

Untethered and Shiny things

I am excited about possibility
lifting 
soaring 
riffing on ideas
untethered 
the wind can take me
though I’ll contentedly land
when my eye
my heart
are captured

A pebble
a worn glass jewel 
so perfect
stuffed into one of many, many pockets
alongside other bits and pieces
scraps
napkin notes
glistening ideas
that line my nest 
feathers
of preparation
for something new 

Caw

Leah Kelley, July 3, 2022

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Holding Space

As adults we must hold space for young people, and nurture their sense of identity and caring for the world, so that there is room and opportunity for all their wild and wonderful imaginings… and so they can make the world their own.

The future is not really ours to be imagined – it belongs to our children…

Stay grounded
Take the one next step
take it firmly and with confidence
this is the part we can control…
with deliberation

Deliberately
liberatingly
with trust
in our capacity
as we hold close
our understanding
of possibility

It is the path of our children
that we are laying down
A holding of space
on a borrowed path
Shared praxis
deliberate space
and pace
to accept them as they are
a liberating place
for our children
to be their authentic selves

Gloriously
joyously
at the helm
self-determining
living their lives
stepping into their own
emergence

Leah Kelley (2020).
Dissertation snippet… (The Person Who Arrives, 2021, pp175-176 )

Posted in acceptance, Autism, Autistic, childhood, poetry, relationships, Space and Pace, trust | Tagged , , , , , | 2 Comments

Resistance

Sometimes
I barely keep breathing
winded
gutted
witnessing the pain
and trauma
of friends
neighbours
fellow humans
Sometimes
the next breath
seems impossible
sucked away
by horror
intensity
hopelessness
And yet…
it comes
the next breath
in and out
The resolve
another breath
is resistance
                                  ~ L. Kelley, October 2018

Image: Photo of a lake with through trees. The mountains, sky and mists of the far shore are mirrored in the still lake waters. Text overlaid on image contains poem as written above.

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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, (2018)

Posted in Collective Responsibility, poetry, prejudice, privilege, Rail Against Stigma | Tagged , , , | Leave a comment

On the ABLEISM of Participation Marks

I was recently involved in an online discussion that has me considering that the common practice or focus on participation is often stacked against people who might participate or engage differently.

When I encounter a situation where I am graded upon my participation, I generally receive exceptional marks because I am good at speaking and writing and comfortable with sharing in a group. I experience this as something I can most often do – in the moment, and in class, with little or no preparation. Also, engaging in this way actually assists me in learning and processing… so for me this has value.

It is not extra work or an additional assignment.

I basically have to just show up and do what works for me as a learner.

But what about the people who do not find participating in this way helpful to their process of learning or aligned with their way of interacting with others?

And what about the people we might have in our classes – for whom just showing up might at times be an issue of accessibility?

What do we read as a student’s commitment and participation (or perceived lack thereof) if their attendance is inconsistent, or if they are not comfortable or able to speak in front of (or with) others, or if they perhaps do not feel safe to share?

It is important to consider the ableism inherent in our conceptualization of participation, and ask, are we creating assignments of participatory accountability that are discriminatory to those who might engage with classmates or course materials differently?

It is unfair that when people do not participate in the traditional sense with ease or comfort, there is a tendency to layer on additional work or other processes of accountability.

And what about students who enroll in online or distributed learning programs for variety of reasons? Perhaps they find the classroom environment overwhelming. Perhaps they have limited personal resources that are drained away, due to fatigue, chronic pain, anxiety, trauma, or____ , and online curriculum offers them opportunity and access that allows them to focus on the curriculum and learning in a way that makes the most of their resources.

My experience with my son in distributed learning (distance education) programs, demonstrated that courses are often deliberately designed to reconcile a lack of class participation or face-to-face time with the teacher by increasing the amount of material to be covered. The instructors typically ensure accountability for this material with an increased number of assignments and written response requirements, with the result that online courses can often be more work and take more time than face-to-face classes.

But what if these students are enrolled in a distributed learning program because they need the accommodations and accessibility related to disability or… ??

And what if written expression is also difficult?

This is additionally unfair because students (like me) who can glide through with the existing measures do so with the privileged ease of participating or just showing up. I have noticed in my own classes that there is an ableist tendency for students and educators to be judgmental of those who don’t participate in traditionally defined ways. The inherent implication is that they are getting away with something, it is unfair, and their difference is some kind of an offence or manipulation that devalues the work and effort of those participating in commonly expected ways (though I have previously suggested that this is not actually work and may require little effort for some people).

So thus, I query, what is the value of measuring participation and who is it for?

Reframing Participation as Engagement

It is not reasonable that students are essentially being punished for not fitting into existing attitudes and values about participation. Perhaps we have defined participation too narrowly and too closely tied to traditional ideas about representing learning and understanding. I am curious about what might happen to our practice as educators (and as learners) if participation was reframed it as engagement with the topic or curriculum. And I am curious how we can represent or demonstrate engagement differently if we decline to add more writing or create additional social/speaking alternatives to somehow ‘prove’ or student participation.

If it is easy for me to demonstrate engagement, why should it be considered an injustice if we find an alternative that makes it easy for everyone?

Accessibility is not a pie to be shared.

It is not a threat to the privileged ease of my experience when things are made accessible for everyone.

Image: Photo of highway empty but for one vehicle far ahead, against a dramatic backdrop of the sun shining upon a beautiful cloudy horizon. To the right of the highway is smaller access road, with no vehicles upon it, and to the left are metal towers with powerlines. Text reads: “If it is easy for me to demonstrate engagement, why should it be considered an injustice if we find an alternative that makes it easy for everyone? Accessibility is not a pie to be shared. It is not a threat to the privileged ease of my experience when things are made accessible for everyone. ~ Leah Kelley”

It is interesting to consider and important to ask, ‘What are other ways we might explore engagement that do not increase written output or talking?’ 

Here are a few ideas:

  • make a video montage that can be shared and is reflective of the concepts being learned…
  • craft a single tweet or social media status about something that resonates
  • choose a favourite quote from a reading and match it to an image to represent it or to create a metaphor
  • create a meme or a visual (or find a pre-existing one) that captures something of interest related to the topic
  • make notations (electronic or written) on a reading that illustrate engagement with the ideas and text – including questions, wonderings, and connections… (for instance actually handing in a single notated page from an assigned reading is powerful formative assessment and reveals much about how the student is processing and understanding the material)
  • create short (one minute or less) pre-recorded audio or video presentations related to concepts – and also allow presentations to be pre-recorded
  • pose a question so that others might respond – and perhaps moderate it online
  • suggest a link for further reading from a blog or another relevant source
  • share a quote or image and a reflection on an article, reading, or related experience, by creating a postcard and having students share these electronically between classes. (Dr. Lynn Fels had students write a series of 7 reflective postcards throughout the Fall 2016 term in my Ed.D. program at Simon Fraser University. It built community and sensitivity to perspectives and experiences of other students that I might not have otherwise understood. This also allowed students to demonstrate engagement in an asynchronous time frame that worked for them.)
  • take a photo of visual notes and/or doodling or drawing while listening (I draw while I listen and as a Neurodivergent person it supports me in focusing and attending.)

As we examine ideas around accessibility and the ableism inherent in the way participation has been traditionally framed and graded, I expect we will come across other opportunities to creatively consider the representation and demonstration of student engagement.

If you have a additional suggestion, please feel welcome to add it to the comments 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, (2018)

Posted in ableism, acceptance, ADD/ADHD, Disability, Distributed Learning, Educator, privilege, Visual Notes | Tagged , , , , , | 5 Comments

Counting… The Day of Mourning and the Disability Clothesline

By Emma Van der Klift

On March 1st of every year for the last three, a small group of activists – mostly activists with disabilities – have gathered together at Woodland’s Memorial Gardens in New Westminster, BC. The Gardens are situated on the former Woodlands institution grounds, and mark the burial place for disabled people who lived and died in that institution from the late 1800s until 1996, when it finally closed.

There is a monument in the Garden that serves as a sombre reminder of how the inmates of the institution lived their lives. It’s a window frame set on top of a concrete slab at the exact height of the windows in the institution. It’s called “A Window too High”, because all the windows at Woodlands were too high for anyone to see out of. There is a reflecting pool in front of the monument, and that’s where we gather.

It’s fitting that we should come together at this particular spot, because we are there to mourn the tragic murders of disabled children and adults at the hands of their caregivers and family members. This year we read the names of more than 700 people, spanning the years between 1981 and 2017, and ranging in age from merely days old to 99 years.

700 names. 700 lives that were taken by the very people charged to love and care for them.

Let that sink in…

What’s been hard for me is that for 3 years I’ve been sending invitations out, asking people who work in support agencies to join us to mourn these lives. This year our small but valiant group likewise posted fliers and called media outlets to let the public know what we were doing, and why. Although our little group was a bit bigger this year – about 30 of us – once again there were few non-disabled allies and no media in attendance.

We’re not sure why so few of the people who call themselves allies come. We’ve heard rumours that it’s too upsetting. I sometimes wonder if those who stay away understand that it’s even more upsetting for the disabled people who do come to the vigil to face this horror. After all, it’s disabled lives we’re mourning.

So this year, we reached out to a larger community of activists in hopes that we might broaden the conversation. This issue is global in scope, and many of us around the world are struggling to bring it to light. Two of those people, Samantha Connor from Perth, Australia, and Catherine Frazee from Halifax, Canada offered words that I was privileged to read aloud at the vigil.

We offer them here with the same hope – that we can begin a serious conversation that we believe we desperately need to be having. The first piece of writing comes from Samantha Connor, and the second (below the image) is from Catherine Frazee.

Thank you, Sam, thank you Catherine, and thank you Leah, for hosting this blog.
Sisters in solidarity.

Emma
~ March 2017

~

A long time ago, I started counting.

I wasn’t a disability activist then. I was interested in the correlation between hate crimes and societal attitudes and I’d noticed that people like me were often murdered, especially by family.

And then I started looking harder.

In 2003, a pair of serial killers from South Australia were jailed for committing eleven murders. And nobody commented on the fact that more than half of the victims were disabled men, chosen because nobody would ever miss them.

Once I started looking, I found more and more names. Autistic children who were stabbed and suffocated and starved by their parents. Disabled women and men who died in hospitals and institutions at the hands of those charged to care for them. Hate crimes and neglect and deaths painted as administrative error.

Scores of them and after a while, the words started leaping off the page at me and making patterns.

Of the filicides, all of the mothers walked free from court. The voices of others invariably cried for forgiveness and the cessation of ‘judgement’, no matter what the parents’ circumstances or level of support. The dead child was reduced to the concept of burden, the parent elevated to the status of martyr and both effectively erased the child’s identity and diminished an atrocity.

Of the hate crimes, disability was rarely painted as a cause. Sometimes there would be commentary about someone being ‘vulnerable’, but even when a person was attacked and murdered as a consequence of hatred based on disability, it was never reported that way. And those cases rarely make it to the Coroners courts – they’re not a ‘death in care’ but a ‘random assault’ in their eyes.

And then there was the neglect, disabled people and children and elders, lying in their own shit or covered in pressure sores and although the courts were a little tougher on their family members, you wondered what those people had gone through before they’d died. Murder at the hands of someone you love is a peculiar kind of torture.

A year later, I set up the Disability Clothesline. Some other disabled women in New Zealand had started a Clothesline over there – disabled women and men paint their stories of abuse and violence onto teeshirts and we hang them in public places. The white shirts are for the people who have died. I paint the white shirts, one by one. Just their names and places and dates of death. The hardest ones to paint are the small ones, sized like the child or infant who has been murdered – sometimes the shirts are so small that it is difficult to fit all the words on.

We hang them out to symbolise ‘hanging out our dirty washing’ – nobody ever talks about disability violence. Our logo is an upturned black triangle and a clothesline wraps around it. In Nazi Germany, half a million disabled children and adults were systematically murdered and they wore this symbol. Nobody talked about them, either.

It isn’t easy to count our people. The Coroners are often our biographers, but we rely on also newspaper articles, casual mentions, friendly journalists. We use their stories like the weapons they could not use to defend themselves. Two years ago, there was an inquiry into violence against disabled Australians and six disabled women, including myself, dressed in black and told the stories of forty of our dead. As we called their names and told their story, we laid a long stemmed white rose in front of us on the table at the Senate. The Senators listened intently, with tears streaming down their faces. We left the roses there. And when they handed down their report, months later, they each wore a white, dried rose pinned to their jackets.

It is wearing, this work. We are all tired of being the teachable moments in the lives of the ignorant and we are tired of defending our worth. There’s an intensely personal element – when someone devalues the life of a murdered child or adult, they’re simultaneously devaluing us. Hard, then, not to wade in and defend our worth and the worth of our brothers and sisters, over and over.

But what spurs us on is the sure knowledge that unless we do this work, disabled children and adults will continue to die. We need to keep reclaiming our people and calling their names and casting sunlight into those dark places where we have been shut out or shut in for so long. This is work that we can only do together and work that we can only do as a community.

We stand and sit with you in solidarity from across the world.

With you, we reclaim our people and call their names.

 Samantha Connor

Image: Emma and H in front of the at the Disability Day of Mourning Vigil. Emma is reading Samantha’s words, and lighted by H’s flashlight.

~

Today we cradle candles in our trembling hands and we remember. We speak the names of those felled by a callous violence, a violence that far too often cloaks itself in rhetorics of care. We speak their names to honour their humanity, and we pay respect to their humanity by our refusal to turn away from the ugly truth of their murder.

Today we hold the immense weight of remembrance. By acts of will and imagination, we summon forth the human stories of lives that mattered, lives entitled to so much more. We offer remembrance as a shield from oblivion. Although it breaks our hearts, we are determined to remember.

“Because I remember, I despair. Because I remember, I have the duty to reject despair.” These are the words of Elie Wiesel, Holocaust survivor and Nobel Peace Prize recipient.

Today, let us make them our words. Today we reject despair, and so much more. Today we reject indifference, ambivalence and empty reassurance. We stand together in our condemnation of all crimes of hate and predatory violence, and we call out the blinkered bias of a justice system that fails to reckon with the impact of such crime on disabled lives.

We resist the fiction of isolated, singular, aberrant death, and shine a glaring light upon the patterns of ableist disregard that rob us of dignity and welcome. We call out the ventriloquy of compassion invoked to soften the edges of a culture of cold neglect.

We will counter the fervour of exclusion and abuse with a mighty solidarity.

Today we will be seen and heard. Today, and tomorrow, and tomorrow after tomorrow, we will be fearless and outspoken in our opposition to the ideologies and public practices that systematically erase and excuse harms inflicted against our disabled brothers and sisters.

Today we renew our pledge of duty to comrades whose cries are no longer heard. I am honoured to stand with you in that enduring pledge.

Catherine Frazee, February 28, 2017

~

Emma Van der Klift is an Autistic writer, artist, educator, and activist. Find more of her work at these related links at Broadreach Training:
Being Autistic: An Interview with Emma Van der Klift
Conversations that Matter

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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, (2017-18)

Posted in ableism, Activist, ASAN, Disability Day of Mourning | Tagged , , , , , , , , , , , , , , | 1 Comment

Toward the River: A Poem of Hope

Toward the River…

Toward the River
I saw the bird-tipped tree
written strong
against the smoke-faded
hills and sky
Living paintbrushes
witnessing
entwined as silhouette
amidst destruction
desolation
resting there
holding space
and promise
for tomorrow

Leah Kelley
February 23, 2018

Image: Square black and white photo of trees with no leaves – and birds silhouetted on the ends of the branches. Text of poem (above) is overlaid with a misty blue background.

I began this poem in August 2017, as we drove along the smokey Thompson River in the fire ravaged interior of British Columbia. I kept those few scribbled lines on a scrap of paper, and finally came back to the image of the bird-tipped tree this past while. It is connected now to other things I am witnessing, and in part written in homage to those who push back against oppression, in solidarity with their vision and enduring commitment to work for justice in our world.

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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, (2018)

 

Posted in Activist, poem, poetry, social justice | Tagged , , , , , , , , | 2 Comments

Electronic Resources: Arizona TASH 2018

Links to information, visuals, and other resources:

Hierarchy of Language Prompts

When – not if

Communication ‘The Tone Hierarchy’

Limit Setting

In this House

Conference Support Cards

Friendship and Relationships:

You, yes you, need autistic friends: A guest post by Neurodivergent K

On Assigning Friendship

Self Understanding:

Yours, Mine and Ours: autism, self-advocacy, and setting limits

The pathologization of interest and curiosity

Therapy Defined: Self-Regulation

Self-understanding, Self-determination, Advocacy, and Activism:

The Teacher’s Kid – It’s not what you think…

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

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

Blacksmith at the Forge + The Music of Invention

Advocating: Love not Fear!

The link between self-understanding and self-advocacy

Disability Day of Mourning: The Loss of Innocence


Communication and Welcoming Dissent

Welcoming Dissent… Self-advocacy, the communication hierarchy, and rethinking tone

Welcoming Your Dissent: A Poem

Periods of Consolidation

Whisper Me Mom

Some of My Favourite Resources:

The Neurodivergent Narwhals: Lei Wiley-Mydske

Conversations that Matter: Norman Kunc and Emma Van der Klift

The Ed Wiley Autism Acceptance Lending Library

Ask an Autistic on Youtube (NeuroWonderful)

Autistic Families International

NeurodiveCast: The Neurodiversity Podcast by Alex Kronstein


Blogs that are MUST READS and Excellent Resources:

Neurocosmopolitanism

Eccentricities & Introspection

Radical Neurodivergence Speaking

Yes, That Too

Amy Sequenzia

Giraffe Party

Love Explosions

Michelle Sutton Writes

Different Kinds of Normal

Amazing Adventures Parenting Autistic Children

Respectfully Connected

30 Days of Autism: Leah Kelley

Autism Women’s Network

We Are Like Your Child

We Always Liked Picasso Anyway

Who Needs Normalcy?

Musings of an Aspie

Boycott Autism Speaks

Small, But Kinda Mighty

Chavisory’s Notebook

Intersected

The Autism Wars

Tiny Grace Notes

Unstrange Mind

Emma’s Hope Book

Ollibean

A Quiet Week in The House

Autistic Hoya

Just Stimming

Neurowonderful

Autisticook

Caffeinated Autistic

Real Social Skills

Autism Or Something Like It

Ed Wiley Autism Acceptance Lending Library

ACAT: Ala Costa Adult Transition Program

Paula C Durbin Westby

Invisible Strings 

Everyone Communicates

Autistic Self Advocacy Network (ASAN)

Diary of a Mom

Autistikids

Autism & Neurodiversity in the Classroom

Parenting Autistic Children with Love and Acceptance (PACLA) on FB

 

Independent Presses to Support:

Reclamation Press

Antonomous Press

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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, (2018)

Posted in Arizona TASH, Autism, Autistic, Neurodiversity, TASH | Tagged , , , , | Leave a comment

Fabulous Fringes: A Short Film by Alex Kronstein

 I don’t know if you have had the opportunity to check out the work of Alex Kronstein, the ever-wonderful curator, creator, and host of the The NeurodiveCast.   Alex’s podcasts offer an alternative way to access information from a wide range of blogs related to Neurodiversity organized on a particular topic/theme.

Alex has created this beautiful short film based upon the poem Fabulous Fringes.

It is spectacular and I am so very honoured!!

 

This poem was written in response to being described as a radical fringe element… Bring it!!

Fabulous Fringes

I love the edges of things
places of intersectionality
where ideas meet
thinking is broadened
perspectives are shared

there is beauty in the edges
the fabulous fringes
that decorate our interactions
and build understanding

L. Kelley
January, 2014

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

© Leah Kelley, Thirty Days of Autism (2014 -18)

Posted in Alex Kronstein, Autism, NeurodiveCast, perspective of others, poem, poetry | Tagged , , , , , , , , , , , | Leave a comment