Navigating access to care

Navigating access to care

Image description: A close-up of the lilacs in my front yard, covered in rain, with the light grey sky behind them.

As a note, I’m going to be posting more often on the blog! I’m shifting my social media presence and will be doing less personal posting and more of my work here. So keep your eye here and on the Patreon. I may also be starting an email list, so if that sounds appealing to you, let me know!

And if the topic of this post interests you, the upcoming Self-Care Salon: Justice and Access to Support is the place to be! The event will be held at Loft 112 in the East Village, from 1-3 pm, on June 3. The cost is $50, and sliding scale is always available.

This morning, I sat in front of my window with the grey skies above and the rain falling. It was lovely.

I’m thinking about how many of us have to try and survive within hostile systems and environments.

How many fat folks have to go to doctors who are steeped in fatphobic prejudice, have to deal with antagonism from the medical system that is meant to help them, and have to advocate for themselves… but not too loudly, not too assertively, or they risk being written off as belligerent and non-compliant. (Especially if they were women or femmes. *Especially* if they are women or femmes of colour.)

How many folks living in poverty have to deal with support systems that vilify, pathologize, and stigmatize them. Have to debase themselves to receive access to food, to shelter, to any kind of medical or mental health support.

How many racialized folks have to deal with racism in their medical and mental health support professionals, have to educate and advocate for themselves but never too much, never too loudly, or risk being seen as “angry.”

How many trans folks have to deal with gatekeeping by professionals meant to help them access transition support, and stigma and pathologization by professionals meant to help them access other support. How advocating for yourself becomes so much harder when you are trans and also racialized, or trans and also fat, or trans and also poor (which is true for far too many), or trans and neurodivergent (despite the high correlation between autism and gender creativity!).

How so many folks stand at multiple points of marginalization, and how few professionals and experts also stand there.

(There are some, and there will be more. Support and love to all the professionals who came from poverty, who are fat, who are Black, Indigenous, or people of colour, who are trans, who are queer, who are disabled – you’re so needed, and you make such a difference!)

I am thinking about all this power that exists in dynamics that are meant to be supportive, how it ends up being hurtful. Harmful.

How that can leave us scared, hopeless, isolated.

If you’re dealing with a system, a professional, an institution, or some other brick wall today – take a deep breath.

What you feel is valid.

If you feel angry at the injustice, that is valid.

If you feel hopeless, that is valid.

If you feel scared, that is valid.

I do not have any easy answers for how to navigate these systems, how to work within harmful frameworks, how to get through. It’s so hard. The more I read about it, the more I work with people who have *not* received the help they needed from professionals who had more privilege, or from systems and institutions that were not justice-oriented, the more I realize how pervasive and persuasive this problem is. The way it makes us doubt ourselves. The way it shuts us up, keeps us quiet and compliant, and how that is a valid survival strategy.

Breathe, friends.

If you have to go into that office and you know you’re going to face yet more racism, ableism, transantagonism… keep breathing. Find something to hold onto – some thread of whatever it is. Hope, or anger, or coffee with a friend tomorrow.

If you’re heading into that appointment and you know you need something that the doctor or social worker or banker or lawyer or whoever else has the power to withhold, and you’re scared, that makes so much sense.

It *is* unjust.

It *is* unfair.

It *is* hurtful, harmful, violent.

But you are good. You are good enough. You are enough.

Just like you are.

You are just the right you.

There is nothing wrong with you, just because you don’t fit into the box assigned to you.

Take a breath.

Do what you need to do to get through.

You’re doing a good job.


Further reading:

  • Stigma in Practice: Barriers to Health for Fat Women in Frontiers in Psychology
    • “In our experience, for fat people, it doesn’t matter if you are bad with a “fatty” disease, or if you are in “good metabolic health” (but NOT FOR LONG, according to several medical professionals), the discrimination, humiliation, and stigma, from health care providers is the same. The fact that we, and every fat person we know, have experienced this fat stigma, no matter what their health status, is an indictment on the health care profession. Health care providers, public health policy makers, and institutions of health such as hospitals have substantial work to do if they exist to treat all patients, and improve the quality of life for all patients, rather than deterring and deferring appropriate health care and reducing quality of life through fat stigma, shame, and eventual patient avoidance of health care providers.”
  • ‘Trans broken arm syndrome’ and the way our health system fails trans people at the Daily Dot
    • “Not a single medical school in the United States has a curriculum devoted to LGBT health issues, much less transgender health issues. Green said the only existing courses that do focus on LGBT health needs are electives taught by students, and it’s not exactly something the medical school leadership wants to change.” (It is important to note that this article is a few years old, and WPATH itself has been critiqued in favour of ICATH – Informed Consent for Access to Trans Healthcare. This article at Slate covers some of the issues.)
  • Why I Left my White Therapist at Vice
    • “Being on the receiving end of the defensive anger of white fragility from someone who I had not only trusted to be a professional care provider with the ethics and background to deal with my needs, but with whom I had also shared some of my most vulnerable thoughts and feelings, means that I am loath to seek out therapy moving forward. To be blunt, I felt exploited. This is something that no individual, and in particular no one opening themselves up for healing, should ever have to endure. But sadly, it’s not uncommon.”
An Open Love Letter to My Friends – guest post

An Open Love Letter to My Friends – guest post

Image description: A person stands in a forest, looking up. Photo provided by Michelle Dang.

This is a guest post by Michelle Dang. Michelle is a cis woman of Vietnamese heritage living on the stolen Aboriginal land of the Jagera and Turrbal peoples (Brisbane, Australia). Michelle is a community worker, narrative therapist and writer. Most of her writing and practice is on feminism, transformative justice and anti-violence work. She will accept any ice cream or basketball challenge. The author can be contacted at michelledang5@gmail.com or follow Michelle on Twitter @dang_power


My beloved friends,

I am writing this because you have shouldered me up. This letter is to all my friends and especially to queer folk, people of colour and those who live on dangerous intersections. If you didn’t already know, I want to tell you now, I love you.

I am not exaggerating when I say that I am alive because of you, that energy and blood runs through my body because of you, that my existence and presence is because of you.

I was deep in the land of hopelessness, succumbed to the hate directed towards my body.  We were never meant to survive[i]. You pulled me in, whispered to me that I had more soul in my little toe than the entirety of the white supremacist shit hole I was in. It was your relentless insistence that I matter, that we matter, that we are magical that pulled me out of the pit of despair.

Of course, the pain I am speaking of is one you know intimately. That pain stems from our relationship with whoever our personal Rose is.  Rose, aka White Feminism, aka Colonial Patriarchal Feminism[ii], aka Trans Radical Exclusive Feminism, aka Sex Worker Exclusive Radical Feminism.

Looking back, I can see why I fell for Rose. War and western imperialism had displaced my family from Vietnam. When we arrived in Australia, little did we know that we were moving from one occupied country to another. I was yearning for a place to call home. A place that would not replicate the violence I witnessed and experienced in my family, in my homeland or on the stolen land I found myself on.

At the time I had met Rose, I had just left a toxic relationship with Lena, aka Social Work, aka International Development. I was very vulnerable.

I was charmed by Rose’s sweet talk about unity, agency and empowerment. I believed that she would offer refuge to a brown broken-hearted girl like me. I believed that we were bound together through a shared rage at the patriarchy.

And yes, in the beginning, she embraced me, like her own. She showered me with compliments, telling me how valuable I was. She reassured me that she understood my pain, that she would fight for me, for us.

But when the honeymoon was over, I realised that I was escaping patriarchal violence within the home, and within sandstone buildings, only to meet it once again within colonial patriarchal feminist organisations. I could see the tricks and tactics of perpetrators played out on coloured and non-conforming bodies within these structures. Sweet feminist words were used as a smokescreen to cover daily acts of minimisation, silencing, gaslighting, invalidation, intimidation, isolation and bullying.

We were never meant to survive.

But we can leave evidence. Evidence that we did survive. Evidence that we matter. That we resisted and persisted. That we gave up, not on liberation, but on empty promises. So, I give testimony to the ways I have survived, the ways we have survived:

I survived because I stopped giving any more time and energy to a relationship that did not value our hopes, dreams and dignity.

I survived the contradictions and cognitive dissonance, like the time Rose spoke over me to tell me the importance of maintaining a safe space for women.

I survived all the white tears, like every time Rose cried about how horrible racism is, but threw me under the bus when I asked for accountability.

I survived numerous lectures about ‘unity’ and how my feminism is divisive.

I survived, by rolling my eyes every time Rose insisted she was neutral.

I survived by not expressing myself. Because there is a cost to naming racism.

I survived by expressing myself. Because there is a cost to not naming racism.

I survived the nausea that would wake me up every morning, because my gut knew before my head did, that I was entering a war zone. Racism is an attack on the body.

I survived because of Sara Ahmed, Audre Lorde, Mia McKenzie, bell hooks, Vikki Reynolds.

I survived (and my cis privilege allows me to survive) after daring to dream that we could dismantle the gender binary system, as though the act of pointing out cis violence causes the loss of something: harmony, peace, white cis power.

I survived when Rose racially attacked me because it so similar to how POC survive racial attacks on the daily when we snap back at men who sexually harass us.

I survived because you believed me and understood that I was not being over-sensitive or dramatic. Because white feminism has become a master at victim-blaming.

I survived by printing and reading revolutionary black feminist material courtesy of Rose’s printer, and it felt good.

I survived that time Rose and her cronies ambushed and cornered me and aggressively interrogated my feminism because I troubled their feminism.

I survived because of your unapologetic declarations that we are magnificent, legitimate, sufficient and beautiful.

I survived that time we publicly denounced Rose’s hate signs against sex workers at Reclaim the Night, and I was told I was rude and to stay in my lane.

I survived by refusing to enter mediation with Rose so ‘we could resolve our differences’. When harm occurs, what is required is accountability not mediation.

I survived that time Rose misquoted Kimberlè Crenshaw to say that intersectionality was just about racial liberation and not trans liberation.

I survived because as Sara Ahmed would say, I snapped[iii], I left.

I survived because I have my ancestors’ fighting spirit running through me. We were not erased by colonisation, dispossession and genocide and we will not be erased by colonial patriarchal feminism.

Thank you for being fierce, determined and unruly. You created what was not there. You wrote me in to history, you wrote me into existence. Because you dared to deviate, you carved a space for me to deviate. Space for me to breathe. Space for me to survive. Space for me to rest.

To my dear friends, fuck I love you.  I love us.

Yours,
Michelle

This piece is inspired by Mia McKenzie’s ‘An Open Love Letter to Folks of Color’ in Black Girl Dangerous on Race, Queerness, Class and Gender and all the love letters I have written and read.


[i] ‘We were never meant to survive’ is the beautiful line that is repeated in Audre Lorde’s poem, ‘A Litany for Survival’.

[ii] Cheree Moreton coined the term Colonial Patriarchal Feminism or Colonial Patri-Fem for short, to describe how white feminists stigmatise and silence the one black voice in the organisation/environment.

[iii] Sara Ahmed uses the term ‘feminist snap’ in Living a Feminist Life as an act of resistance. This is when we have reached a breaking point, “when what you come up against threatens to be too much, threatens a life, or a dream, or a hope” (187).


This post is the second in the year-long Feminism from the Margins series that Dulcinea Lapis and Tiffany Sostar will be curating, in challenge to and dissatisfaction with International Women’s Day. To quote Dulcinea, “Fuck this grim caterwauling celebration of mediocre white femininity.” Every month, on the 8th, we’ll post something. If you are trans, Black or Indigenous, a person of colour, disabled, fat, poor, a sex worker, or any of the other host of identities excluded from International Women’s Day, and you would like to contribute to this project, get in touch!

Also check out the first post in the series, All The Places You’ll Never Go, by Dulcinea Lapis.

All the places you’ll never go – guest post

All the places you’ll never go – guest post

Image description: Cherry blossoms against a blue sky. The frame is vignetted and dark at the edges. Photo credit: cocoparisienne, Pixabay.

This is a guest post by Dulcinea Lapis, a pan, polyam, woman of trans experience, writing from a position of colonizer privilege. This is the first in a year-long series of posts that Dulcinea and I will be curating, in challenge and dissatisfaction with International Women’s Day. To quote Dulcinea, “Fuck this grim caterwauling celebration of mediocre white femininity.” Every month, on the 7th, we’ll post something. If you are trans, Black or Indigenous, a person of colour, disabled, fat, poor, a sex worker, or any of the other host of identities excluded from International Women’s Day, and you would like to contribute to this project, get in touch! Dulcinea named our project: Feminism from the Margins.


The Places You’ll Never Go

When I was young, I heard about the places I’d go. About the person I’d get to be. The great things I’d do. What I never heard about were the places I can never go, because of what people would do to the person I choose to be.

Moving through the world with an Othered identity is a violent experience. Picking and choosing what parts of us to honor and what needs to be cut away. I can only speak to the parts of me that aren’t welcome in the mainstream, as a Trans woman without passing privilege, and a queer person who is out and public. I am shielded from much by being white, not being of a marginalized faith and by not having a visible disability. It’s important to note being othered further would mean there was even less of a much too small world to see.

I would love to go to the Women’s March. To stand in solidarity with others and refuse to be silenced and boxed in. Wear a tank top with an inflammatory slogan and take part in the cathartic rejection of patriarchy. I would love to, but I never will. A quick perusing of the Facebook event disabuses me of that notion. Every post on their Facebook page about how including Trans-voices is silencing women for men, the failure of their moderation showing how comfortable they are with every barbed-wire post, every poison-pill comment made in false good-faith. The moderation comes too late, they belatedly reach out to Trans-women for organization…but at this point how can I trust I’ll be welcome? Why take the risk? It’s fine. I’ll make a slit and out comes the part of me that wants to go to these public events, cut out of myself like my wish to travel. I won’t even notice.

The World Shrinks.

I would love to go to a ladies night at a games cafe. To share my love of games and my favourite hobby with others in a space free of toxic competitiveness and masculine posturing. An evening spent with the simple affirming company of women with the same interest. I never will again. Once was enough and it sticks with me.

I drop by the store to scope it out, it’s entirely white women. I get glares, as I pretend to peruse the products on offer, a hostility that I can feel in my bones, like a storm on the horizon. To them I’m not woman enough to be here, and a cute dress and makeup won’t change anything. As I leave I can hear a mutter: “I was worried he’d stay and we’d have to put up with another one.” I get rid of this need as well. It stings as I slice this out and I can feel something missing, but at least I can move on before something happens.

The World Shrinks.

It’s affirming and pleasurable to wear skirts and dresses, tanks and leggings, clothing and makeup and those things I missed out on for so long. Early forays made with friends, their guidance and presence a reassuring balm against the gnawing anxiety under my skin. Of course going back alone is like wandering through brambles, tearing and cutting away at me. Leaving me bloody. Places that tout body positivity and inclusion still have flamboyant men who glare at me when I ask questions about eye shadow and women who  are so stunned at my knowledge of makeup foundation that they won’t make conversation. Glares as I ask for sizes range from skeptical to hostile. I’ll make sure to shop online, or where my friends work, from now on.

The World Shrinks.

There are already so many places that come with such added risks that they’re almost a punchline. What washroom do I use? Use the women’s and risk a confrontation? Use the men’s and risk a beating? How do I go to a Gym where there’s even more exposure? It doesn’t matter that these spaces have been made safer for women; being the wrong sort of woman is just as likely to end in violence as it ever has. I’ll just ignore it, what’s a little bladder infection against a loud, public confrontation, where – at best – so many feminists will just look away, and even (privately) be glad to see me gone. Once more I take parts of myself away. I’m carving deep now and getting rid of things recently hard won, experiences lustrous and new. A loss that’s worth it though. It’s not like I have any option or way to make these spaces mine.
The World Shrinks
I’ve got my home. A place of refuge. I can post on the internet about my politics, even if I’m not welcome to display them alongside allies. Surely that’s good enough right? I can play games online, invite trusted friends with years of history over and get my craving for companionship that way. I’ll order clothes from websites, hope that they fit, and make do when there’s places too tight or too loose. Make do with the makeup I have, wait until it runs out and then book time off for when I know a friendly face is on-shift at my ever-dwindling list of shops. I’ll just use the washroom at home, train my body to need it less. Avoid food and water when possible. I’ll find a space at home and work out there, if someone else from my building comes in I’ll wrap up and leave. Why take the chance? I’m safe here. I’ve cut and snipped and taken out so much of myself, it feels like almost nothing is left. Everything reminds me of what I’ve had to gouge out so as not to transgress spaces not meant for me. Maybe I can ignore the number of Trans-Women that are killed in their homes, doxxed and stripped naked to a hostile world already too small.
Could the world shrink any further? Could I?

Tiffany Sostar is a self-care and narrative coach, offering one-on-one and group coaching, both in person on Treaty 7 land/Calgary and online. Coaching is available in single-session, package, or yearlong formats. Get in touch to book some time! They also offer regular online courses, workshops, and other events. You can find them on Facebook, and you can support their work on Patreon. They have a double BA (hons) in English and Women’s Studies, with a focus on how marginalized communities write new narratives for themselves, and they are currently enrolled in the Master of Narrative Therapy and Community Work program at the Dulwich Centre and the University of Melbourne.

We’re Forked: Navigating Spoon-Disparity in Long-Term Relationships

We’re Forked: Navigating Spoon-Disparity in Long-Term Relationships

Image description: Kate’s incredibly stylish orange cane, leaning against white drawers with silver handles, on a wooden floor. 

This is a Patreon reward post for Kate, and was available to patrons last week. Patreon supporters at the $10/month level get a self-care post on the topic of their choice during their birthday month. These supporters make my work possible! Especially as I head into my Master of Narrative Therapy and Community Work program, my patrons ensure that I can keep producing resources and self-care content. (And wow, there are some really great resources in production! Check back tomorrow for a post about that!)

Kate and I have known each other for a few years, and got to know each other while we were both going through some challenging times (though we didn’t actually meet in person until quite a bit later, and still aren’t able to spend as much time together as either of us might like!)

Kate has been one of my most outspoken supporters, and I appreciate how she is always willing to leap in with an offer of help or a suggested solution.

Her birthday is in January, and her topic is, “maintaining intimate relationships and partnerships with a chronic illness or chronic pain.”

I struggled with writing this post because I am experiencing my own spoon shortage. I’m in the middle of a depressive episode, have been sick for the last two months, and my fibromyalgia pain has been spiking. All of these spoon-hoarding gremlins are impacting my own relationships, challenging my sense of who I am and how I navigate the world, and putting gloom-coloured glasses on my view of the future. When I write about self-care for folks who are struggling, it’s easier when I can write about a struggle I am not currently experiencing. It’s easier if I can yell back into the labyrinth from the safety of the outside. Easier, but not always better. It is a myth that the best insights come from people who have “figured it all out” – I believe the opposite is often true. When we are in the thick of it is when we have the most relevant and meaningful insider information. Our struggle is not a barrier to our ability to help each other – it is the fuel that allows us to help each other. This is one of the key principles of narrative therapy, and as much as it challenges me, I am trying to bring it into my own life. Can I write something worthwhile from the heart of the struggle? Yes. Well, I think so. Let’s find out.

What Kate asked about was maintaining intimate relationships while navigating chronic illness or pain. In relationships where one person experiences chronic issues and another doesn’t, those issues can create a significant disparity in ability and access to internal resources. (And in relationships where multiple people are experiencing chronic issues, the pressure resulting from reduced access to resources can grow exponentially.)

Being in the position of having (or perceiving that we have) less to offer often triggers shame, fear, and stress. In my own relationships, I worry that I’m not worth it, that my partners will grow tired of me. I worry that I’m “too much.” I have heard the same worry from my clients.

This anxiety is so natural, and so understandable. Our society does not have readily accessible narratives that include robust “economies of care.” Our most common narrative has to do with “pulling our own weight” in a relationship, and our definitions of balanced relationships rely so heavily on ideas of equality rather than justice. Split the bills 50/50. Take turns washing the dishes. You cook, I’ll clean. My turn/your turn for the laundry, the diapers, the groceries.

And it becomes more complicated when we consider the intangible labour of emotional support and caregiving, which is disproportionately assumed to be the role of women in relationships with men, and, since women are also often the ones experiencing chronic pain or illness, this can compound into a messy and unjust situation pretty quickly. (To back up these claims, check out the links at the end of this post.)

Thankfully, both of these problems – the tit-for-tat approach, and the unjust division of emotional labour – are being challenged by writers, activists, and communities on the margins.

In Three Thoughts on Emotional Labour, Clementine Morrigan writes, “We can name, acknowledge, honour, perform, and yes, accept emotional labour, instead of simply backing away from it because we don’t want to be exploitative.”

This is so challenging for so many of us, because we do not want to exploit our friends, our partners, our communities. When we experience chronic illness or pain, the fear that we might slide into exploitation and “being a burden” becomes amplified. Morrigan suggests that we can ask three guiding questions about the emotional labour we are offering or accepting – Is it consensual? Is it valued? Is it reciprocated?

If we can answer yes to each – if we are discussing what we need and what we can offer, if we are valuing what we are offered and if our own offerings are valued, and if there is reciprocity – fantastic!

But what does reciprocity look like in situations where there is a disparity in access to resources?

Morrigan suggests that:

“It is important to acknowledge that some of us need more care than others. Some of us, due to trauma, disability, mental health stuff, poverty, or other reasons, may not be in a position to provide as much emotional labour as we need to receive. We may go through periods where are able to provide more emotional labour or we may always need more care than we are able to give. We may be able to reciprocate care in some ways and not others. This is totally okay. We need rich networks of emotional care, so that all of us can get the care we need without being depleted. We need communities that value and perform emotional labour—communities that come through for each other. Reciprocity is a commitment to building communities where all of us are cared for and no one is left behind; it is not a one for one exchange.”

It is not a one for one exchange.

This is so critical.

And it’s so hard to make space for this. It’s hard to see our worthiness and the value we bring to a relationship when what we offer has shifted from what we were able to offer before the chronic issue grew up within us and between us.

Not only that, but it’s often hard for our partners to recognize what we’re bringing to the relationship. Not because they don’t love and appreciate and support us, but because they are also caught within the web of accessible narratives and ableist norms.

In order to answer “yes” to Morrigan’s “is it valued?” question, we need to be able to look clearly at the work our partners, friends, and families are doing for us and acknowledge that work. And we need to be able to look clearly at our own work and speak openly about it, so that it can be valued. Neither side of this is easy.

Becoming aware of the skills and insider knowledges that we develop as we live our new pain-, disability-, or illness-enhanced lives can help with recognizing, articulating, and allowing people to value our new contributions.

In A Modest Proposal For A Fair Trade Emotional Labor Economy (Centered By Disabled, Femme of Color, Working Class/Poor Genius), Leah Lakshmi Piepzna-Samarasinha writes:

“Sick and disabled folks have many superpowers: one of them is that we often have highly developed skills around care. Many of us have received shitty, condescending, charity-based care or abusive or coercive care—whether it’s from medical staff or our friends and families. We’re also offered unsolicited medical advice every day of our lives, mostly coming from a place of discomfort with disability and wanting to “fix” us.

All of this has made us very sophisticated at negotiating care, including our understanding that both offering and receiving it is a choice. The idea of consent in care is a radical notion stemming from disabled community wisdom. Ableism mandates that disabled people are supposed to gratefully accept any care offered to “fix” us. It’s mind blowing for many people to run into the common concept in many sick and disabled communities, that disabled people get to decide for ourselves the kind of care we want and need, and say no to the rest. This choicefulness has juicy implications for everyone, including the abled.”

I love her wording here. The juicy implications of choicefulness! Imagine the possibilities of this.

And yet, even as I revel in this juicy and nourishing framework, I remember my own deep and ongoing struggle with the concept of pain, illness, and disability as invitation, as superpower, as self. This radical reorganization of labour within relationships does not come easily, and one of the reasons it’s so challenging is because our concepts of fairness are so influenced by one to one exchanges.

Piepzna-Samarasinha addresses this fear later in the essay, reminding us that, “Disabled people often run into the idea that we can never offer care, just receive it. However, we often talk about the idea that we can still offer care from what our bodies can do. If my disabled body can’t lift yours onto the toilet, it doesn’t mean I can’t care for you—it means I contribute from what my particular body can do. Maybe instead of doing physical care, I can research a medical provider, buy groceries for you, or listen to you vent when one of your dates was ableist.”

We forget that there is still care, still reciprocity available within our relationships even when our ability to perform the tasks we used to, or the tasks we wish we could, has shifted.

Learning how to navigate this shift is challenging.

Searching for resources to share in this post, I was discouraged by the sheer volume of academic research performed by normatively abled “experts” on the outcomes for relationships that include a disabled partner. Once again, the centre scrutinizing the margins. It creates such a disempowering framework.

I was also dismayed by the fact that “should I date a disabled person” was one of the suggested related searches. Gross! GROSS!!!!

These are the narratives, and the social framework, within which we try to navigate our relationships as pain/illness/disability-enhanced individuals.

We need more robust, inclusive, intersectional, and hopeful resources. Not hopeful in the “look on the bright side” gaslighting-via-silver-lining sense. Hopeful in the sense of possibility-generating, hope that, in Sara Ahmed’s words, “animates a struggle.” Hope that reminds us that there are narratives possible outside of the ableist norm, and that we can write those love stories within our own lives.

The parts of ourselves that do not fit tidily into the ableist ideal show up in our relationships in many ways. In order to write those inclusive love stories of any kind – platonic, romantic, familial, or parental – we need to recognize and learn to navigate all of it. Financial, social, emotional, physical, mental – very aspect of ourselves that requires tending and care.

Chronic illness/pain/disability impacts our financial lives – we are often less able to work within normative capitalist models. The 8-5 grind doesn’t work if you can’t manage a desk job for 9 hours a day, and many other jobs are also out of reach. This adds pressure to our partners and social supports. Money is a huge source of shame and fear for many of us, so learning how to talk about requiring financial support, how to shift the balance of contribution in a household – overwhelming! Be gentle with yourselves in these conversations.

I find this particularly challenging. More than almost any other way in which my chronic issues impact my relationships, the financial instability that has been introduced as a result of my no longer being able to work a full-time job feels humiliating and shameful. I am working hard to carve out a living for myself, to build my business in sustainable and anti-ableist ways, to do what has to be done to pay my share of the bills. But my partners still take up more than what feels “fair” in the financial realm, and it’s hard. For me, engaging with writers, activists, and advocates who are challenging capitalism and neoliberalism has been helpful. Recognizing that there are other economic models available has opened up some space for me to still see myself as a contributing member of my partnerships and society.

Chronic illness/pain/disability also impacts our social lives – getting out to see friends can become more challenging. Our partners can end up taking on more social caring work for us, being the ones we talk to when we aren’t getting out (or when we don’t feel safe to talk about our struggle with others).

The aggressive individualism of our current anglo-european culture means that we are often isolated, and this can be so discouraging. Again, I struggle with this personally and I don’t have easy answers.

And searching for resources on parenting with chronic pain, illness, or disability is similarly challenging and disheartening. Parenting with any kind of divergence from the ideal is difficult. The weight of judgement, assumption, erasure, hostility, and isolation is so real. Although more supportive and inclusive blog posts, research papers, and articles are being written, the perception of a weirdly-abled parent is still one of lack, inability, and pity.

We often want to provide everything our children needs, without outside help. That’s the expected ideal. The nuclear family is still the celebrated norm, and the ideal of a normatively abled, neurotypical, stay-at-home, biological parent is still the target to meet. We may recognize that “it takes a village” but we resist the idea that part of what that village offers may be physically chasing after the toddler, lifting the baby, doing homework with the teen, helping with the rent. Just like we need to expand our conception of emotional labour and economies of care within relationships, we need that same expansiveness and redefinition within our parenting relationships and roles.

Which is easy to say, and incredibly hard to do.

At Disability and Representation, Rachel Cohen-Rottenberg writes, “What so many able-bodied feminists don’t get is how profound an experience disability is. I’m not just talking about a profound physical experience. I’m talking about a profound social and political experience. I venture out and I feel like I’m in a separate world, divided from “normal” people by a thin but unmistakeable membrane. In my very friendly and diverse city, I look out and see people of different races and ethnicities walking together on the sidewalk, or shopping, or having lunch. But when I see disabled people, they are usually walking or rolling alone. And if they’re not alone, they’re with a support person or a family member. I rarely see wheelchair users chatting it up with people who walk on two legs. I rarely see cognitively or intellectually disabled people integrated into social settings with nondisabled people. I’m painfully aware of how many people are fine with me as long as I can keep up with their able-bodied standards, and much less fine with me when I actually need something.

So many of you really have no idea of how rampant the discrimination is. You have no idea that disabled women are routinely denied fertility treatments and can besterilized without their consent. You have no idea that disabled people are at very high risk of losing custody of their children. You have no idea that women with disabilities experience a much higher rate of domestic violence than nondisabled women or that the assault rate for adults with developmental disabilities is 4 to 10 times higher than for people without developmental disabilities. You have no idea that over 25% of people with disabilities live in poverty.”

So that fear of embracing a new normal, subverting the neoliberal individualist norm, creating new economies of care and radically altering our relationships to be just rather than equal… this doesn’t happen in a vacuum. We aren’t just subverting norms and creating new relationship methods – we are doing so, as parents, under the scrutiny of an ableist and highly punitive culture. We are conscious of the fact that our subversion of norms, which may be possible within adult relationships, may make our parenting relationships more precarious, more tenuous.

Access to external help is readily available to the professional upper class – nannies are a completely acceptable form of external help, and parents are not judged for needing a nanny when that need is created by long working hours. Needing help in order to be more productive? Sure thing. (You’ll still face judgement, of course. Can any parent do it “right,” really? Nope.)

But needing help because of pain, illness, or disability?

Yikes.

That is much less socially sanctioned, and there are far fewer narratives available that leave space for that choice to be aligned with a “good parent” identity.

And yet, many of us do parent while in pain, while ill, while disabled. And we are good parents. Just like we have valuable superpowers of caring that can be brought into our adult relationships, we have the same superpowers of caring to bring into our parenting roles. What we do may look different than the pop culture ideal. How we do it, when we do it, who helps us with it – that might all look different. And that’s scary. But the value it brings to our kids is immeasurable.

One of the invitations that chronic illness, pain, and disability extends is that it pulls the curtain back on how harmful the neoliberal ideology of rugged individualism really is, and asks, “is there another way?”

I’m not great at saying “yes” to that invitation, but I’m getting better at recognizing it when it shows up. I don’t need to have all the answers, because I have a community around me that is brilliant and incredibly generous.

So, when I was struggling with this post, I asked my best friend and one of my partners to help me.

H.P. Longstocking has been dealing with the long-term effects of two significant concussions, and in a moment of discouragement at my own inability to write this post, I asked if she could help me get started. What she sent touched on so much of what I wanted to write about, so eloquently, and I’m ending this post with her incredibly valuable contribution. She is a parent, a scholar, and an integral part of the social net that keeps me going. I think there’s hope in how she has responded to this.

She writes:

While I am no stranger to depression or anxiety, I had never experienced a chronic debilitating illness and I found that my self-care habits and techniques were no longer usually helpful or even always possible. Last summer I had several concussions. Because I had sustained so many as a child, these two accidents completely changed my life. Most of the summer I was not safe to drive or even walk as my second concussion happened when I tried to walk out of my bedroom and due to the concussion symptoms, I cracked my head into a wall. I could not look at screens, read, handle light or loud noises, and was told to stop having sex. All of my self-care habits were taken away.

I have always been an active person. Running and cycling have been my times of meditation and recalibration. Dancing brings me joy. Physical activity has been an integral part of my self-care since I was a small child. To have days, weeks, and months where walking short distances is the most physical activity I can safely manage, and some days not even that, has had a detrimental impact on my body and my emotional well-being.

I used to love to read. I devoured books and articles. I had just started my Masters and was supposed to be immersing myself in the scientific literature. I could not do any of that. I still struggle. Reading was my escape, my lifeline, my lifeblood, and I hoped, my livelihood. Now it causes me pain.

I was not prepared for the constant, chronic pain. Previously, I had headaches so rarely, I did not recognize them the few times a year I would experience one. Now, I have a hard time recognizing it because I am never without one. I find that I have my face screwed up in pain after someone reacts to me as if I am scowling at them. My coping mechanisms for the pain are to hyperfocus on something so I am unaware of most of the world around me. Unfortunately, this is usually my phone which in the long term makes it worse, but also as it gets worse, I have less self-control and ability to stop myself.

All of this has impacted my relationships. Without the ability to drive, I am often limited in who I can see and where I can go. Even without that, I am easily tired in social settings and my words begin to slur in mental exhaustion. I cannot handle loud spaces for very long, or if I do, I pay for it with days of recovery. I often feel isolated, alone, and incapable of taking care of myself, let alone being the partner, parent, and student I aspire to be.

But, I have adapted. Instead of reading, I listen to audiobooks. Instead of digesting dense theory or the latest studies, I listen to light narratives and fiction that has a plot so predicable that I can fall asleep and not miss much. I go for short walks instead of long bike rides.

My relationships have also changed.

It is hard to feel like you are not carrying your weight, especially in this neoliberal culture where people are valued according to how much productive and profitable output they can do. It is hard to be a partner with someone when you are more dependent and roommate than lover. It is hard not be able to see people, leave the house, focus on what someone is saying, or do what they are doing. It is so isolating and would be so much more so with poverty added as well. It hurts to see your kids do an impression of you which is just sleeping.

My friendships have changed. I am slowly learning to ask for help. To say no. To cancel plans last minute because it is not safe that day for me to go out. I cancel plans so often now that I am scared to make them. Much of my socialization now is online and sporadic. There is a price to pay for too much screen time. I am spending more time with people I do not have to hide my pain from. I do not have the resources to put up with mind games and people who suck energy. I have a few friends that make safe spaces for me to come and just nap around them so I won’t feel alone. My life is rich, even though my world and abilities have shrunk.

Self-care looks entirely different to me now. Instead of the sun on my face and the pounding of my feet on running paths, I sip tea wearing sunglasses. Instead of pushing through discomfort, I am learning to listen to it so that I do not make things worse. Instead of losing myself in the written word, I find comfort in story, sound and other sensory delights. Some of the people I spend time with have changed, and the ways I spend time with people have also. I do not know which symptoms will resolve and which I will have for the rest of my life, but while I grieve for friendships and opportunities lost, I am also grateful for the capacity to change and adapt, and trust that relationships worth holding onto can withstand the changes as well.

Further reading on emotional labour:

#stickfiguresunday: What IS Self-Care?

#stickfiguresunday: What IS Self-Care?

Today’s #stickfiguresunday is all about the complexity of self-care and the many factors that have to be considered. Self-care is so much more than any one action, or set of actions.

Self-care includes long-term, short-term, and emergency actions. It includes individual, communal, and structural action. It is soft and easy, *and* hard and demanding.

Self-care is always dependent on our available resources – social, emotional, financial, physical. Self-care also depends on our histories and our particular intersections of trauma, oppression, and privilege.

We are always practicing self-care – people are *always* responding to their struggles and challenges, even when those responses are not socially acceptable or recognizable as self-care.

One definition of self-care, the one that I use, is that self-care is any action that honours our needs. This includes actions that may not be sustainable long-term and that may not be socially sanctioned – self-harm, addiction, dissociation, and others.

One definition of sustainable self-care, which I use, is that sustainable self-care happens when we bring awareness, compassion, and intention to these actions.

Many of the ways we talk about self-care are geared towards financially privileged cisgender white women, and these exclusions and erasures can be so hurtful. Our conversations need to expand, our definitions need to develop depth and nuance.

Community care is a critical part of self-care – so we need to keep asking, which communities are being left out of these discussions? How can we deepen and extend the conversations? How can we honour and acknowledge the self-care that is being practiced by poor, fat, neurodivergent, racialized, traumatized, and otherwise marginalized folks?

Image description: A stick figure stands. A thought bubble reads, in colourful text – social? emotional? physical? financial? mental? creative? trauma? spiritual? collaborative?
Below the thought bubble in various shades of green – What IS self-care? How can we practice self-care? How do we talk about self-care?

You Are Not Alone: Pregnancy and Infant Loss Awareness Day 2017

You Are Not Alone: Pregnancy and Infant Loss Awareness Day 2017

Image description: A picture of a forest. Text below reads You Are Not Alone Stories, thoughts, and resources after the loss of a pregnancy or child Created for Pregnancy and Infant Loss Awareness Day | 2017

Today is Pregnancy and Infant Loss Awareness Day.

Ten days ago, one of my friends noted that the available resources were incredibly gendered, heteronormative, cisnormative, and overwhelmingly white.

Creating resources that help serve the margins is exactly the goal of my Patreon, and it’s why I do what I do, so we came up with a plan, reached out to contributors, and spent the last week and a half pulling together something that I am really proud of.

This resource is not perfect. It’s a first draft, and it’s not as inclusive as it needs to be. Our goal is to reissue the resource each year with an expanded selection of personal stories, and a refined resources section. If you would like to have your story included in the next issue, let me know.

You Are Not Alone

Stories, thoughts, and resources after the loss of a pregnancy or child

Created for Pregnancy and Infant Loss Awareness Day | 2017

Introduction

This document was created as a response to loss resources that are highly gendered, and that implicitly assume their readers are straight, white, and cisgender. It was also created to try and provide something free and easily accessible.

It is a first draft, and we hope to reissue this document yearly with more and better information and resources.

Although this resource attempts to be intentionally inclusive and anti-oppressive, the two primary collaborators – Tiffany Sostar and Flora – are both English-speaking white settler Canadians, with stable housing and strong social supports. Our privilege means that we are missing nuance, and we do not see what we’re not seeing. We are open to being corrected, and to hearing from people who do not see themselves represented in this document. You can reach Tiffany at sostarselfcare@gmail.com.

This document is designed to be a grief and loss resource, and we have included abortion stories and resources. However, we recognize that not every abortion is experienced as a loss or followed by grief. (This is true for miscarriages, too!) We also recognize that it is possible to feel grieve without feeling regret, and this is true for any pregnancy loss, whether it’s abortion, miscarriage, stillbirth, or adoption.

We are so thankful to the individuals who contributed to this document. Our call for contributors was met with courage and generosity by people who shared their stories despite the pain that telling the story brought up for them.

We are also thankful to Andi Johnson and Randi van Wiltenburg, both full-spectrum doulas in Calgary, Alberta, who contributed not only their personal stories but also a wealth of knowledge and information. Their professional contact information is listed in the resources section.

Parents we want to honour:

  • Those who have lost a child to miscarriage
  • Those who have lost a child to abortion
  • Those who have lost a child to stillbirth
  • Those who have lost a child after birth to medical illness
  • Those who have lost a child after birth to adoption
  • Those who have lost a child after birth to structural violence

This affects:

  • People of any gender identity
  • People of any sexual orientation
  • People of any relationship status and structure
  • People of any race or culture
  • People of any state of mental or physical health
  • People of any religious belief
  • People of any socioeconomic status

Download the 60-page PDF here.