New Wheelchair Joy

I wrote this on International Wheelchair Day, which is also the Disability Day of Mourning, March 1. Archived here upon request.

Robin, a white genderqueer wheelchair user with pink hair, smiling sideways at the camera. Photographed by Andrea Francolini, 2022.

My new wheelchair is finally through the manufacturing & import process, fitting appointment on Wednesday.

It’ll be my 3rd chair. 1st was a self funded bucket of junk. 2nd – this one – is a sleek $24k ndis-funded ultralight artwork, that has nevertheless begun to rust and fall apart after 4 years. 3rd is a ndis-funded $31k fine-tuned freedom machine that will hopefully serve me well.

My first wheelchair fitting was in 2015. At the time I was mostly housebound after years of rapidly declining health & mobility, in which I sought care from so many different drs and specialists that I lost count. 6 month waitlists, $550 initial consults, $600 MRIs, being told I was dying, being told I was crazy, being told I was exotic, difficult, “falling into the sick role”, being patient, trying to be a good patient, struggling to keep up with countless appointments and scans and tests trying to figure out what was happening to me. It was exhausting and expensive and soul eroding. 

I didn’t want to be sick. I wanted to finish uni and go to parties and make friends and live my life. I wanted to go to the beach, get on a bus, go to the library. It took years of hell to get the answers and diagnostic reports that made me eligible for state supports.

I don’t really miss walking. When I do, it’s usually less about the walking itself and more about missing the ease and simplicity of navigating the world as someone who could walk. I miss being able to go to the pub without calling ahead. I miss dating and making new friends without being seen as a fetish or a spectacle. I miss being able to get through every unlocked door. I miss being treated like a person by everyone I met.

I miss going to house parties, jumping on the bus during rush hour even if it’s busy or the ramp is broken or the bus doesn’t have a ramp, catching a train without having to tell 5 different people and be there 15 mins early, booking tickets to a show at the last minute & trusting I can get in the door, booking a table at a restaurant without worrying about whether I’ll be able to get into the bathroom, doing anything or going anywhere on the spur of the moment without having to map out my routes in advance, catching a flight without risking my freedom at the hands of poorly trained baggage attendants. 

I miss not having to manage my health like a full time job on top of my actual work. I miss having the luxury of so many hours in a day. I miss picking up casual work in workplaces that would never employ me now. I miss going places by myself without having to be hypervigilant about well-meaning – or not so well-meaning – strangers grabbing my handles and being unable to stop them.

I don’t miss the way I used to move through the world. What I miss is living in a world that was built for me.

I am grateful, now, to live in the world not built for me. It has radicalised me and taught me difficult lessons. I have learnt what solidarity looks like, about mobilising, about organising, about loving each other and living for each other.

More than anything I’m grateful to be back in the world at all, and not stuck at home in bed.

I love my wheels because they gave me my life back.

My new wheelchair, a sexy Tilite TR in acid green metallic, with gel cushions, better back support, and jacked up suspension.

With thanks to Kerima Çevik who asked for a shareable version, and to Bill Peace, whose writing I think of often; this post and this one are of particular relevance here. RIP to a real one.

CHRONIC ILLNESS, DISABILITY, & DIGITAL LIFE

I was very honoured to host a podcast episode for the Digital Writer’s Festival recently: Chronic Illness, Disability, and Digital Life, with CB Mako, Gemma Mahadeo, and Katerina Bryant.

You can listen to the podcast or access a transcript here.

When, in an ableist society, one’s access and participation in IRL spaces may be limited and fraught, what possibilities can the virtual sphere provide? Join queercrip activist and artist Robin Eames, and writers Katerina Bryant, CB Mako and Gemma Mahadeo as they discuss their relationships with disability, chronic illness and creative practices in the virtual realm. A conversation about the politics of visibility/invisibility, the body, freedom and autonomy online. Produced by Thanh Hằng Phạm.

From the episode:

Robin M Eames:            What advice would you give to younger emerging disabled and chronically ill writers regarding digital spaces?

CB Mako:                      For me, it would be, if you’re an emerging writer like myself, constantly ask for space. I know it’s frustrating, exhausting, it’s a journey, it’s a long battle, but we have to do that, and we intercept and ask for those spaces. If in terms of technology, if you need a technology to have the space, if there are grants out there that would help us do the work that we need to do, I hope there is. There’s NDIS, but unfortunately, I don’t know how NDIS would work in our area, because it hasn’t rolled out yet. That’s called the National Disability Insurance Scheme, for those who are listening outside of Australia. So, it’s a long journey, and, to have this space with Digital Writers is a good step, it’s a beginning. I hope other producers, other programmers would give us the space as well.

Gemma Mahadeo:        I’d say to emerging writers that identify as disabled, to not be ashamed of stating what your access requirements are, and your voice is valuable. No one will have the perspective that you do. So, it’s going to be really hard, but have faith that you deserve to be heard, and producing the work that you’re producing. Don’t be ashamed about how little or how much you’re producing, because personally, I think health should come first before creativity. You will produce your best stuff when you feel good about yourself, and feel healthy. It took me a long time to learn that one. So, don’t be ashamed of having to step back also, from online spaces or real life spaces, if that’s going to be better for your health, because it might look difficult to other people, but you’re not being difficult looking after yourself.

Katerina Bryant:           For me, I would say, take the time to find what works for you. Don’t rush in creating your work, like you said Gemma. Be generous to yourself, and know that there are communities out there for you, even if you feel as though your situation or your illness or experience of disability is complex, or a little different. There are people out there for you, and there’s art out there for you to both experience and to make.

Robin M Eames:            I suppose my own advice would echo probably all of that, but also, just try not to be discouraged when people are awful, because people can be awful. A lot of the time, it’s not even because they’re being malicious. It’s just because they don’t understand. A lot of the time, it can feel like all we should need to have our needs met, is to be able to be heard, but sometimes you need people to be willing to listen. It’s not your fault if they don’t, it’s not your fault if a space is inaccessible for you.

Robin M Eames:            If you can’t access a space, it’s not on you. It is not a reflection on you. It’s all right if your needs are different to other people’s, and it’s up to society to create spaces that everyone can use, and interact with each other. It’s not your responsibility. But at the same time, it can be so powerful to reach out to other people, like both people who don’t experience the things that you’re experiencing, and the people who do, because we can’t understand each other until we’re talking to each other, and listening to each other.

Robin M Eames:            It’s important as well, not just to talk, but to listen and try to keep in mind that everyone, everyone has different needs. We’d be better off I think, if we could approach interaction in the hope that everyone can get their needs met as much as possible.

RESISTANCE AND HOPE

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Illustration by artist Micah Bazant featuring a midnight blue sky with little white stars. Below is a log with mushrooms growing out of it in multiple shapes and colors. “Text reads: Resistance & Hope, Essays by Disabled People, Crip Wisdom for the People, Edited by Alice Wong, Disability Visibility Project.” The ‘o’ in ‘Hope’ looks like a full moon.

I am very excited to finally share Resistance and Hope, an anthology of essays by disabled writers and activists. The anthology is available to read here for free online.

I was very honoured to work as an editorial assistant (and herder of cats) for Alice Wong, the editor of the anthology.

Resistance and Hope is comprised of 16 essays by 17 multiply marginalised disabled people. Contributors include writer and advocate Vilissa Thompson on the audacity of hope as a Black woman; LGBQT advocate Victoria Rodriguéz-Roldán on respectability politics; attorney and activist Shain Neumeier on trauma and survival; ADAPT legend Anita Cameron on the importance of holding hope in darkness; activist Stacey Milbern on caregiving collectives and Medicaid cuts; artists DJ Kuttin Kandiand Leroy Moore on hip hop and disability liberation; writer and artist Naomi Ortiz on self-care and growth; fearless agent of change Talila A. “TL” Lewis on resistance and revolutionary madness; writer and poet Aleksei Valentín on Judaism and disability solidarity; essayist and poet Cyree Jarelle Johnson on autism in a time of resistance; activist and poet Lev Mirov on death, grieving, and survival; autistic advocate and organiser Lydia X.Z. Brown on praxis, accountability, and intracommunity abuse; writer Mari Kurisato on colonial violence and visibility; comic Maysoon Zayid on the strategic fight for our rights in the Trump era; community organiser Mia Mingus on transformative justice and building alternatives to violence; and artist and writer Noemi Martinez on survival and multiple marginalisations.

This is crip wisdom for the people.

QUEERING CRIP, CRIPPING QUEER

QCCQ Cover

Rainbow collection of disability symbols under text reading QUEERING CRIP, CRIPPING QUEER, workshop facilitated by Robin Eames.

I did a workshop today at the University of Queensland for the Queer Collaborations conference, titled QUEERING CRIP, CRIPPING QUEER.

A recording of the workshop is available here (Auslan interpreted) and the slides can be accessed here.

Love & solidarity,
robin

Article out in Junkee on Stephen Hawking

I wrote an article for Junkee about Stephen Hawking and the media reception of his death. You can read it here.

Excerpt:

Stephen Hawking died two days ago. He was an extraordinary and uncommon academic, a scientist with a deep sense of artistry and a wicked sense of humour. And he was a bright fire in the lonely sky of disabled academia.

I am not a scientist. But I am a wheelchair-using academic, and I have a lot of feelings about space; my thesis has “cosmogonies” in the title. Hawking’s work was a joy and his presence in the world was a comforting reminder that people like me belong in academia just as much as any abled person does.

So it is disappointing, and deeply hurtful, to see how abled people are handling the news of Hawking’s death.

Many abled people have created artistic depictions where Hawking’s spirit is seen standing or walking away from his wheelchair. Leaving aside the fact that Hawking was a staunch atheist who described the idea of an afterlife as a “fairy story”, this fundamentally misunderstands the function of a wheelchair in a disabled person’s life.

Hawking is not “finally free” of his wheelchair now that he is dead. His wheelchair is the thing that gave him freedom during his life. The only time he ever envisioned himself mystically floating away into a sparkly cosmos, it was with his chair: go ahead and watch his cover of Monty Python’s ‘Galaxy Song’ if you want to see for yourself.

Read the full article on Junkee here.

 

 

 

Disability Day of Mourning fundraiser

fight

Image: a black shirt with text in light blue and bright red, reading MOURN FOR THE DEAD, FIGHT LIKE HELL FOR THE LIVING, a quote from Mother Jones.

I’m volunteering as Sydney site coordinator for the Disability Day of Mourning again this year, but I need some help to cover the costs of venue hire, public liability insurance, and printing event materials.

If you can, please consider buying a shirt (or a hoodie, sweatshirt, or tank top) to help cover the costs involved. There’s an option to add a donation to the cost of the shirt if you’re feeling especially kind. They come in black, charcoal, navy, indigo, and purple.

Link to the Bonfire campaign here: Disability Day of Mourning

Alternatively, if you hate wearing clothes but would still like to help out, you can send $$ via paypal.me/robinmarceline.

Crip love & solidarity 

In the past five years, over 550 disabled people have been murdered by their parents, relatives or caregivers.

On Thursday, March 1st, disability communities in Sydney and around the world will gather to remember the disabled victims of filicide – disabled people murdered by their family members or caregivers.

In the year since our last vigil, our community has lost 100 more people to filicide. These are just the cases that we are aware of – since we began monitoring this issue, we learn about more murders every week. The total number of deaths is likely higher than the amount that reach the media. This problem is made worse by irresponsible news coverage which presents these murders as the sympathetic acts of loving and desperate parents, by a justice system which often gives a lighter sentence to a parent who kills a disabled child, and by the dangerous cultural prejudice that says a disabled life is not worth living.

Media coverage and public discourse about disability filicides frequently justifies them as “understandable” and sometimes “merciful”, rather than appropriately condemning the crimes and those who commit them. If the parent or caregiver stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of people they should have been able to trust, and ultimately forgotten. And then the cycle repeats.

But it doesn’t have to.

For the last six years, the Autistic Self Advocacy Network, ADAPT, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund, the American Association of People with Disabilities, and other disability rights organisations worldwide have come together to send a clear message that disability is not a justification for violence. We read the victims’ names, see their photographs, and gather what information we can about their lives.

We hold the Day of Mourning vigils to draw attention to the violent injustice faced by disabled people, to commemorate the lives of victims of filicide, and demand justice and equal protection under the law for all people with disabilities.

Find your local vigil site here: Day of Mourning Vigil Sites

View the online Disability Memorial here: Disability Memorial

NOTHING ABOUT US WITHOUT US
 

CRIPS AGAINST THE CAMPS

“crips against the camps” in red block capitals, “rally for manus refugees” in smaller white block capitals, on a black background

On Friday the 17th of November, the University of Sydney Disabilities & Carers Collective held a protest outside Prime Minister Malcolm Turnbull’s office, condemning the current refugee crisis and demanding the immediate evacuation of Manus Island.

We also delivered a statement & list of demands, which you can read below, or download as a word document here: University of Sydney Disabilities and Carers Collective Statement and List of Demands. You can also read it at the Disabilities & Carers Collective’s Facebook page here.

#EvacuateManus #CripsAgainstTheCamps

Crips Against The Camps protest

[image: eight young activists from the University of Sydney Disabilities & Carers Collective & Sydney Grassroots with their crossed arms raised at a protest outside Prime Minister Malcolm Turnbull’s office in Edgecliff. One is a wheelchair user, one has a purple cane, & one has a sight cane. There is a megaphone on the ground. Two of the activists (myself and my mate charlie) are repping Annie Segarra’s excellent THE FUTURE IS ACCESSIBLE shirts.]

University of Sydney Disabilities & Carers Collective Statement in Solidarity With Manus Island Refugees & Condemning the Ongoing Refugee Crisis

The University of Sydney Disabilities & Carers Collective acknowledges:

  1. (i) That Australia is a racist settler state built on colonial violence;
    (ii) that the founders of “Australia” also came here on boats and without permission;
    (iii) that sovereignty was never ceded and there is no treaty with our Indigenous peoples;
    (iv) that the Aboriginal Provisional Government and the Indigenous Social Justice Association have stated that asylum seekers are welcome on Aboriginal lands in Australia;
    (v) and that the false Australian government consequently has no right to refuse entry to refugees.
  1. (i) That the United Nations Convention Relating to the Status of Refugees, which Australia ratified in 1954, defines a refugee as someone who is unable or unwilling to return to their country of origin owing to a well-founded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group, or political opinion;
    (ii) that 90% of asylum seekers who come to Australia by boat have been found to be legitimate refugees under the UN Convention, even though the terms of the Convention itself are limited;
    (iii) that the Australian Government’s Department of Immigration and Border Control’s insistence on referring to legitimate refugees as “illegal maritime arrivals” and “immigration detention detainees” is dehumanising and disingenuous.
  1. (i) That according to Australia’s ratification of the United Nations Convention Relating to the Status of Refugees, this government has an obligation to provide aid to refugees fleeing persecution, regardless of whether Australia has processed their claim or recognised their refugee status;
    (ii) that the Convention must be applied without discrimination on the basis of race, religion, country of origin, sex, age, disability, sexuality, or other prohibited grounds of discrimination;
    (iii) that the Convention recognises that refugees are often forced to breach immigration rules and should not be penalised for entering or staying illegally, nor should their freedom of movement be restricted, and that prohibited penalties include charges of immigration or criminal offences relating to the seeking of asylum, or arbitrary detainment purely on the basis of seeking asylum;
    (iv) that the Convention stipulates that no one shall expel or return (“refoule”) a refugee against their will, in any manner whatsoever, to a territory where they fear threats to life or freedom;
    (v) that under the Convention refugees have rights including the right to access to the courts, to primary education, to work, and the provision for documentation, including a refugee travel document in passport form;
    (vi) and that according to the Convention Australia is currently failing its obligations to refugees.
  1. (i) That Nauru and Manus Island are deeply harmful environments;
    (ii) that refugees on Nauru and Manus and in onshore detention centres experience a disproportionate prevalence of PTSD, suicidal ideation, and self-harm, as a direct result of their retraumatising surroundings;
    (iii) that the Australian government has placed refugees in environments that have caused them to develop mental, emotional, and physical disabilities arising out of trauma and neglect;
    (iv) that the Australian government has consequently failed to provide adequate healthcare to refugees.
  1. (i) That forcible institutionalisation of marginalised peoples is detrimental to health, happiness, freedom, and autonomy;
    (ii) that the forcible institutionalisation of disabled people is not so different to the forcible institutionalisation of refugees, and in both instances leads to further traumatisation, abuse, and neglect;
    (iii) and that disabled people in our Collective and the refugees on Manus, Nauru, and in onshore detention, many of whom are disabled themselves, share a common struggle.
  1. (i) That potential healthcare costs of refugees and asylum seekers are not a reason to deny them aid;
    (ii) that the above argument is a deeply eugenicist position and one that is predicated on the assumption that the worth of a human life can be determined by how much a person costs the state;
    (iii) that the above argument perpetuates harmful narratives around health and healthcare that are deeply dangerous to disabled people;
    (iv) that the above argument violates the United Nations Convention Relating to the Status of Refugees’ protections against discrimination on the basis of disability;
    (v) that refugee lives have worth regardless of how expensive their medical bills are;
    (vi) that it is a community’s responsibility to care for each other;
    (vii) and that refugees are part of our community.
  1. (i) That Australia has a responsibility to the refugees placed on Manus Island and subsequently abandoned;
    (ii) that the “alternative accommodations” provided to the abandoned refugees on Manus are not safe or adequate;
    (iii) that the refugees on Manus have a reasonable fear of persecution and violence if they continue to stay in Papua New Guinea;
    (iv) that Papua New Guinea’s immigration department and chief of police have issued statements disavowing responsibility for the Manus refugees and have called on Australia to fulfil its legal obligations;
    (v) that to place refugees in the harmful conditions on Manus was a human rights violation to begin with, and that to abandon them there is not a solution to the harm of offshore detention processing, but rather a compounding of the violence and mistreatment directed towards refugees applying to Australia for aid in the face of persecution.

Consequently, the The University of Sydney Disabilities & Carers Collective demands:

  1. That the Australian government evacuate the refugees and asylum seekers presently on Manus Island, close the detention centre on Nauru for good, and bring all the refugees and asylum seekers to the place of their choosing, whether that be Australia or New Zealand;
  2. That all mandatory detainment of refugees and asylum seekers should cease immediately;
  3. That all refugees and asylum seekers should be released into the community, and be given justice, freedom, legal and medical aid, and proper humanitarian support without delay;
  4. That Peter Dutton, the current Immigration Minister, be sacked, for gross dereliction of duty, for perpetuating harmful misinformation about refugees, and for participating in a system that enacted dire human rights abuses;
  5. That all future legislative approaches to refugees and asylum seekers, in both the government and the non-government sectors, across local, regional, national, and international levels, be led by consultation with the refugee community and with Aboriginal and Torres Strait Islander peoples;
  6. That specific laws be implemented prohibiting the mandatory detention of refugees and asylum seekers;
  7. That the Australian government fulfil its obligations to the United Nations Convention Relating to the Status of Refugees, including providing refugees with freedom, settlement, and humanitarian resources regardless of the way in which they came here;
  8. That the Australian government implement strategies for proper humanitarian aid with regard to refugees and asylum seekers travelling to Australia in dangerous conditions, including maritime rescue operations;
  9. That refugees and asylum seekers should be reunited with their families in cases where they have been involuntarily separated;
  10. That the Australian government adopt policies of accountability and repatriation, including acknowledging the torture and abuse that has been enacted under the auspices of the Australian Government’s Department of Immigration and Border Control, and making amends to those who have been directly or indirectly harmed as a result of the traumatising system of mandatory detention, the provision of appropriate healthcare and community support, and that the refugees and asylum seekers who have been harmed as a result of Australian government policies should be compensated along with their families, and that compensation should also be given to families of those who have lost their lives after being deported or forced to self-deport to danger.
F R E E  O U R  P E O P L E !

Ratified by:

The 2017 Disabilities & Carers Collective Office-Bearers
Mollie Galvin, Hannah Makragelidis, and Noa Zulman

The 2018 Disabilities & Carers Collective Office-Bearers
Robin Eames, Mollie Galvin, and Ren Rennie

LOVECRY/BATTLESONG

Recently one of my poems was a finalist in the Coalition of Texans with Disabilities’ Pen2Paper disability-focussed creative writing contest. I have reproduced the text of the poem here.

To my crip siblings, crip lovers, & crip mentors, to Laura Hershey and to Stella Young.

LOVECRY/BATTLESONG

To the crips I love and who love me in return
from a distance or intimately close during
long nights where neither of us can sleep for pain
waiting for morning and the pain that morning brings
I am here for you.

To the crips who have been crips for longer
than I have been on this earth and who
welcomed me with open hearts and fire
of loving purpose in ancient battle
I am here for you.

To the crips who taught me power
comes from pride and pride comes from practicing
until you are proud (and that you don’t get proud
by being shit: you get proud by practicing)
I am here for you.

To the crips who do not know that they are crips
but know only that they hurt that their bones ache
that their muscles are heavy and that their eyes sting
in sunlight after another unhelpful appointment
I am here for you.

To the crips institutionalised and imprisoned
whose first crime was living and continuing to live
abused and neglected in homes that are not homes
trapped not in their bodies but by bar and mortar
I am here for you.

To the crips who sleep overnight
in desk chairs and wheelchairs
in the offices of politicians bedecked with banners
reading FREE OUR PEOPLE
I am here for you.

To the crips that have houses but not homes
or homes but not houses or neither home nor house
forced to live on the kindness and sideways glances
of strangers on public transport
I am here for you.

To the crips whose lands have been stolen
whose waters have been stolen
whose children have been stolen and whose lives
continue to be stolen
I am here for you.

To the crips who dislocate their hips
doing full service sex work to pay for medical bills
incurred from dislocating their hips
while doing full service sex work
I am here for you.

To the crips fighting to love each other
and to have their love recognised on equal terms
with all who are in love without penalty or price
or public stigma or getting bashed on street corners
I am here for you.

To the crips fighting to love themselves
after being unloved by those who should have loved them
or after being hurt by those who professed their love
but only when it was convenient
I am here for you.

To the crips who are drowning
in cold oceans seeking refuge or drowning
on dry land as their lungs fill with fluid
while emergency registrars do not watch
I am here for you.

To the crips who are burning
who have burnt out and from the ashes
are rising again charcoaled and brittle
and bold and battle-hardened
I am here for you.

To the crips who died
after living and loving and fighting
and then falling
to be remembered with love and fight
I am here for you.

To the crips who aren’t dead yet
living and fighting and fighting to live
and loving each other and fighting
for each other
I am here for you.

To the young crips, the old crips, the
queer crips, the trans crips, the brown crips,
the black crips, the proud crips, the tired crips,
the warrior crips, the poet crips, the dead and alive crips,
I think of you
I love and fight for you
I am here for you.