The Willow's Work

CONTESTED ILLNESS. I will admit, I couldn’t help but fantasize about getting a diagnosis other than ME/CFS. I wanted something other people would understand, something that wasn’t on the cutting edge of research. “Contested illness” is used to describe an illness that health care providers may not believe is real or valid. It’s most often used to describe illnesses experienced primarily by women, and illnesses that don’t have a clear physiological cause. Of course, if medical professionals don’t believe an illness is real, they’re not going to fund research to find physiological abnormalities, and the cycle of disbelief continues. ⠀ ⠀ Have you received a diagnosis of a contested illness? Do you feel it was correct? How do new care providers react when you share your diagnosis? ⠀ ⠀ Contested illness is what happens when the medical industrial complex loses sight of itself. Ask any medical professional, and they’ll tell you that medical science does not know everything. But given a patient with unexplained symptoms and a swiftly disintegrating life, they’ll shunt them over to psychiatry rather than admit they don’t have the answers. ⠀ ⠀ Receiving a diagnosis of a contested illness can be difficult- I know I had a lot of mixed feelings. There was relief at finally being able to name what I was experiencing, but also frustration and grief that my diagnosis would continue to put me at risk of stigmatized care. ⠀ ⠀ ID: A sage green background with the text, “Contested illness. An illness that healthcare providers may or may not believe is 'real' (has a known physical origin). Stigmatized and underfunded with roots in sanism." ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME #POCwME #DisabledPOC #Pilipina #Asian #Undiagnosed #InvisibleDisabilities #disability #SickAndDisabled #DisabledAndProud #DisabilityAdvocate #Ableism #Crip #SocialWork #Biopolitics #Spoonie #Diagnosis #ContestedIllness (at Toronto, Ontario) https://www.instagram.com/p/CMC66d9j9cl/?igshid=nnwlbdc6a4ug

WHO CAN ACCESS DIAGNOSIS? If you’ve been following me, you know that for over three years I have brought white men to medical appointments and it has made a huge difference in my medical care. Access to diagnosis is much more complicated than who can afford to see the doctor. It includes who can get to a doctor at all, and who is more likely to be listened to when they talk about their experiences of illness. Socioeconomic status, the rural/urban divide, gender (especially being trans or GNC), sexuality, race, language, access to transit, work hours, and immigration status can all have significant effects on your ability to get a diagnosis. It is long known that Black women in the US face the highest rate of preventable maternal mortality, and that it’s rooted in racism. ⠀ ⠀ How long have you been looking for a diagnosis, or how long did it take to be diagnosed? What factors do you think affected how long it is taking/did take? How do you think each of these factors would affect one’s ability to access diagnosis? ⠀ ⠀ Some examples of how structural issues restrict access to diagnosis:⠀ Studies still show that medical students believe that Black people literally have thicker skin⠀ Diagnoses like conversion disorder continue the sexist legacy of illegitimizing women’s experiences ⠀ Migrant workers and other people locked out from citizenship are not eligible to receive government health care coverage in Canada⠀ Cutting-edge treatment is often not covered, and requires sick people to pay out of pocket ⠀ Travel to receive in-person care requires accessible transport, the ability to pay for it, and work that permits you to access care often offered only during working hours ⠀ Care providers often become frustrated by requiring translation, and offer fewer options or provide less opportunities for informed consent ⠀ ⠀ ID: A teal bluegreen background with the text, “Who can access diagnosis?” ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME #POCwME #DisabledPOC #Pilipina #Asian #Undiagnosed #InvisibleDisabilities #disability #SickAndDisabled #DisabledAndProud #DisabilityAdvocate #Ableism #Crip #SocialWork #Biopolitics #Spoonie⠀ (at Toronto, Ontario) https://www.instagram.com/p/CJzL4GCD2ir/?igshid=1sib9h6m7h1d0

YOU HAVE SURVIVED SO MUCH. We get so caught up in doing The Work that sometimes we forget to take time and recognize the effort we’ve put in. I think a lot of us have faced massive change this year. Take a moment now, and write down how you’ve made more room in your life for you. What have you survived? What needs have you met? What fears have you learned to live with? What self-destructive processes have you changed? What strengths are you bringing into the new year? ⠀ ⠀ I started attending decolonization school with @babaylanstudies, rediscovered my love of writing with @justineabigail of @livinghypen , got comfortable asking for help, chose clean pain, learned to pace, and can say when I deserve better. ⠀ ⠀ The Willow’s Work is about the change required for healing justice: the structural changes we need for a more equitable world, and the internal changes we need to live in it. In some ways, I’ve been doing The Work since I was a kid- I’ve always been a sh*t-disturber. This year, I decided to sit down with my journal and write about what changes I’ve made to my life and to my internal world that have moved me towards healing justice. I was shocked. I’m always focused on what I “should” change that I didn’t realize how much I’ve already done. What accomplishments have you brushed by? ⠀ ⠀ Alt Text: A digital scrapbook page with an image of Kaia sitting on a riverbank on top of a kraft paper background. The text reads, “You have survived so much.” A sprig of white flowers has been taped to the page. ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME #POCwME #DisabledPOC #Pilipina #Asian #Undiagnosed #InvisibleDisabilities #disability #SickAndDisabled #DisabledAndProud #DisabilityAdvocate #Ableism #Crip #SocialWork #Biopolitics #Spoonie⠀ (at Toronto, Ontario) https://www.instagram.com/p/CJW11FxjFUZ/?igshid=1ss09inpbmxxa

WHY DO WE CARE SO MUCH ABOUT DIAGNOSIS? It took ten years and two months for me to receive a conclusive diagnosis. Along the way I gathered a handful of placeholders, and a large serving of medical trauma. How long did you stay undiagnosed? How did it feel? ⠀ ⠀ Diagnosis is so key to our understanding of illness. It prompts an expectation of what someone’s experience with illness might be, though often that expectation is too rigid. It puts your experiences within the realm of understanding, rather than an unknown impossibility. On the flip side, it medicalizes your life by placing it squarely under the power of the medical model. It also provides medical, state, and social validity. Other doctors may take you more seriously with a diagnosis, if it is one they understand. A lot of social programs are gatekept to people who have diagnoses, which is a huge problem when for many people it takes years to obtain one. Finally, since the medical industrial complex is so powerful, even friends and family may need a diagnosis before they understand that you ARE sick, let alone how that illness affects your life.⠀ ⠀ Remaining undiagnosed keeps you in limbo. Without a diagnosis there is so much doubt: are you actually sick? How are you sick? Do you deserve to access help and accommodations? ⠀ ⠀ ID: A pale green background with the words, “Does diagnosis matter?” arranged in the center. ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME #POCwME #DisabledPOC #Pilipina #Asian #Undiagnosed #InvisibleDisabilities #disability #SickAndDisabled #DisabledAndProud #DisabilityAdvocate #Ableism #Crip #SocialWork #Biopolitics #Spoonie⠀ (at Toronto, Ontario) https://www.instagram.com/p/CIy7WdpDdde/?igshid=1kdy36w8gxycs

MY NAME IS KAIA. You used to know me as Kat! I’m so relieved and very very happy to be able to say that my name is now legally Kaia Mayari Arrow. EEEEEEEEEEEEEE!!! ⠀ ⠀ Kaia means stone, willow, and sea. “Kaya” in Tagalog means “to be able to.” Mayari is the Pampangan goddess of the moon, equal rule, and revolution. ⠀ ⠀ ID: A desaturated photo of Kaia and Bunny behind a text banner reading, “EEEEEEEE! MY NAME IS KAIA. A very special announcement!” Kaia is laughing and holding up Bunny in front of a patch of tall grass. ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME #POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminist #biopolitics #sick #illness #spoonie #SpoonieLife (at Toronto, Ontario) https://www.instagram.com/p/CHtGSEUjc88/?igshid=6lzpuettmfc

TREES BY THE HUMBER RIVER #SPOONIEVISION. Along the shores of the Humber River, stands of trees glow green and gold in the afternoon sun. Straight brown tree trunks that lead your attention up to the flashing canopy of bright green leaves. Patches of blue sky and sun peek through. 12 000 years ago, the Huron and Petun First Nations built fishing camps on the banks of this river. Now we take a moment to pause in the shade of these trees. Take one slow breath, and now another. Feel the warmth of the sun on your face, its light flickering through the lush greenery above. The sounds of wind and river intertwine, a low rush of sound and motion. This land was also once known as the Toronto Carrying Place Trail. What are you carrying today? What do you release into the arms of this wind, and what do you keep close and nurture? ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminist #biopolitics #sick #illness #spoonie #SpoonieLife⠀ (at Humber River) https://www.instagram.com/p/CHJQ4WZjdmn/?igshid=1kpwysh8gcenq

WHY IS DISABILITY #INSPIRATIONPORN BAD? I’m in the drawing! I’m honoured to have been drawn by super-cool Toronto artist @frizzkidart whose work includes the iconic, “Healing Is Not Linear” piece. A lot of commenters asked why considering disabled people inspiring is a problem. * It’s not inherently wrong to be inspired by a disabled person, but it is a problem when all disabled people are EXPECTED to be inspiring. *Who gets to be an “inspiring” disabled person? Who doesn’t? Young, thin, ciswomen with visible disabilities are often assumed to be inspiring. What assumptions do we make about fat disabled people? What do we assume about less visibly disabled people? *With the assumption that disabled people exist to inspire able people is anger when disabled people are NOT inspiring. *We need to talk about what barriers disabled people have to overcome, rather than praising individuals for overcoming problems that are systemic. *Finally, inspiration porn is often used to shame others into doing more, like “what’s your excuse?” This puts down the accomplishments of disabled people, and it pressures able people while oversimplifying issues they may be facing. I do not live my life to inspire able people- or to infuriate them, which I do just as often. I don’t often name my diagnoses, which puts people off. They want to know which box to put me in: deserving or undeserving, inspiring or uninspiring. But my diagnosis/disability has nothing to do with whether or not my behaviour is inspiring. ID: An illustration of four disabled people by Hana Shafi of @frizzkidart , with handwritten text reading, “Disabled people don’t exist to inspire you.” @the.mad.muslimah wears a red hijab with a flower crown and heart sunglasses over a sweet leopard print coat. @thewillowswork is drawn seated in her electric wheelchair, with floral shoes, a long blue skirt, and a blue crop top. @preezilla stands next to her, rocking glasses, a yellow top tied up above their waist, and wide leg lavender pants. @infiniteecho97 is seated with one ankle over their over knee, wearing a bright pink “queer as fuck” and red shoes. https://www.instagram.com/p/CGqOOoYjb2u/?igshid=layntppf7oy3

THE THORNY COMFORT OF FITTING IN. I recently started my last requirement for my social work degree: another work placement. I feel a thrill when I say things like, “I have work” or “I have supervision” because it makes my life relatable to the mainstream. I feel myself sink into the comforting feeling of finally fitting in. There are so many things about my life that are incomprehensible to others. In mainstream North American culture, our worth is determined by our work. Sometimes it’s a relief to not have to push back against that idea, especially as someone who isn’t worth very much under that paradigm. It can dilute my assertion that my life is still meaningful even when I’m not selling my labour. And it’s hard to go back to having to defiantly believe I’m worth something in the face of a world that disagrees. ⠀ ⠀ How do you feel about the focus on work as worth? How do you value yourself? What do you do to push back against this? ⠀ ⠀ ID: A photo of Kat sitting cross-legged, with sky and trees behind her. The text, ‘“work” and fitting in’ is hand-written around her in dark grey cursive. Her long wavy hair is loose on her shoulders; it contrasts with her yellow raincoat. ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminist #biopolitics #sick #illness #spoonie #SpoonieLife⠀ (at Toronto, Ontario) https://www.instagram.com/p/CGVXQH_Dj13/?igshid=1txp3o2io00c6

ONLINE CONNECTIONS ARE REAL CONNECTIONS. I’ve been hearing from a lot of people that when COVID-19 is over, they’ll be able to make real connections with everyone they’ve met through online events. It is deeply privileged to be able to say that online connections aren’t real, especially during COVID-19. It can be hard to get used to, it can take more time to develop intimacy, but if you are able to adjust you can make real friendships. For some of us, there is no other option.⠀ ⠀ Building relationships online takes a certain amount of flexibility. While you’re tied to the rigid systems of text, voice, or video chat, you’re also released from the strictures of time and place. Some of my best friends live thousands of kilometers away in completely different time zones, and that’s actually made it easier to maintain relationships. We don’t have to deal with the pressure of trying to be physically together, which can be really complicated for me. We’re free to pour our energy into online interactions, at times and places that work for us. For me and @simplyb_ that is all the time and any place. ⠀ ⠀ So if you’re waiting to have a connection in person, consider what’s stopping you from putting effort into connecting NOW. Is text hard for you to work in? Try videos, or non-synchronous video chat. Do you not like being tied to your phone? Set aside time to respond to people and turn off notifications the rest of the time. Or do you just believe you can’t make real friends online? Trust me- people have been doing long-distance friendships for ages. Give it a try. ⠀ ⠀ ID: “Online connections are real connections” is written over an image of a pale pink paper that has been folded into six parts and unfolded. A white heart drawing tops off the text. ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminist #biopolitics #sick #SickGirlsClub #illness #spoonie #SpoonieLife⠀ (at Toronto, Ontario) https://www.instagram.com/p/CF--Q1Rjq8m/?igshid=1tt9zl0jjsroa

CALLING ONTARIO SOCIAL WORKERS AND SOCIAL SERVICE WORKERS! We're seeking participants over the age of 18 who are prospective, recent, or eligible registrants with the Ontario College of Social Workers and Social Service Workers (OCSWSSW) for a 10-30 minute survey on the medical self-disclosure policy for registering with the College. ⠀ In January 2018, the College implemented a policy requiring applicants for certificates of registration to provide information about past or present physical or mental conditions or disorders that could affect their ability to practice in a safe manner.⠀ ⠀ We are trying to determine whether current social work and social service worker students, recent graduates and unregistered social work professionals have concerns about this legislation and to assess the impact of this disclosure requirement on those applying for membership in the College or those who have gone through the registration process since January 1, 2018.⠀ ⠀ Link to the confidential survey in bio!⠀ ⠀ If you would like more information, or if you have any questions, you can contact the lead researcher Chris Chapman at [email protected]. This study has been reviewed by the York University Research Ethics Board (e2015 - 025)⠀ ⠀ ID: A sage green solid background with black text on top: "Calling Ontario Social Workers & Social Service Workers. Survey on medical self-disclosure requirement for registration with the OCSWSSW. 18+ students, recent registrants, and eligible registrants. Confidential survey link: https://cutt.ly/onswsurvey. This survey has been reviewed by the York University Research Ethics Board (e2015 - 025)."⠀ ⠀ #ChronicIllness #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #SocialServiceWork #SocialServices #illness #spoonie #research #Ontario (at Toronto, Ontario) https://www.instagram.com/p/CFS_l8VDzYW/?igshid=1mgr3ma09n5dc

WHAT DOES THE OVERCOMING NARRATIVE HIDE? When I’m in white abled spaces, I tend to get comments about how “inspiring” it is that I have “overcome.” There is an expectation that disabled people be inspiring at all times, that we surpass the barriers placed before us. When we focus on individuals who have “overcome” we put the onus on people to be extraordinary, rather than removing the obstacles that prevent everyone from being ordinary. ⠀ ⠀ This same expectation exists for ALL people are who considered deviant or different: femmes and transpeople, people of colour, immigrants, low-income earners, queer people, and of course, sick and disabled people. For me, the overcoming narrative is a pathway for us to understand how we spin structural issues (like racism, sexism, and transphobia) to make them about individuals beating the system. When we focus on individuals, it distracts us from the urgent need to change the systems that make it harder for some people to succeed. ⠀ ⠀ The overcoming narrative makes the invisible visible: all we have to do is ask what exactly we expect people to overcome. For regular ol’ me, it includes the assumption that I am less competent and less reliable than white men. For Michelle Obama, there was an expectation that she did not belong at an Ivy League school, the white supremacy present in her field, and the need to prove others wrong before she could be considered right. Racism (and other categories of structural oppression) are not just about being called slurs on the street- or in the media, in Michelle’s case. It is also about the assumptions and barriers you must Overcome to be considered valuable. Talking about individuals who have beat the odds feels good, but it doesn’t mean we should not change the odds. ⠀ ⠀ Where do you see the overcoming narrative used? What barriers does the overcoming narrative hide in those situations? What does the overcoming narrative say about people who are not considered to have “overcome”? ⠀ ⠀ Image description in comments. ⠀ (at Toronto, Ontario) https://www.instagram.com/p/CE2YgIMDSh-/?igshid=irtcomgehxza

WHY DOES #REPRESENTATION MATTER? I don't remember when representation started to matter to me. I needed to experience it first to know what I was missing. I needed to feel that jolt of recognition, of feeling seen and valued, to understand that without representation I felt invisible and unwanted. If I don't see insecure Asian ambulatory wheelchair users on TV or in Parliament, I know our existence isn't considered valuable enough to reflect on the small screen or in structures of power. ⠀ ⠀ When we fill our media feeds with diverse voices, we take a small step towards recreating the complex world we actually live in. My Instagram is full of wonderful sick, fat, people of colour; and now the white abled worlds on TV or in power seem so much more unreal to me than they used to. When I curate my media to reflect diversity, I curate my understanding of what is “normal” or acceptable. Representation changes who we consider outsiders, and what experiences are mentionable. When we as a larger society reflect diversity in media and power, what we think of as “normal” or acceptable changes. ⠀ ⠀ ID: A square image with an inset photograph of Kat visiting the temporary House of Commons in Ottawa, Canada. The text, “Representation prompts change” is overlaid. She is seated in a slick electric wheelchair, wearing leggings underneath a grey-blue floral skirt with a t-shirt that reads Disability Justice is Love. A coral and grey-blue watercolour wash is splashed against the background of the image.⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminism #sociology #biopolitics #sick #SickGirlsClub #illness #spoonie #SpoonieLife⠀ (at Parliament of Canada House of Commons and Library of Parliament) https://www.instagram.com/p/CEhZ06PD3Rp/?igshid=mqyuxbu9668n

LET’S TALK ABOUT COVID LONG HAULERS. If you’re in ME/CFS communities, no doubt you’ve seen an influx of new characters. They write that they got COVID-19 and never recovered, and their research led them to us. They ask, “how do you guys cure this?!” and “how do you get doctors to listen to you?!” Prominent public health figures are talking about how long haulers might have “something very similar to ME or chronic fatigue syndrome.” ⠀ ⠀ Sick people, it can be hard to see people who have been ill for months receive more recognition than we have gotten in decades. I hear you. I feel that frustration and that bitterness too. But long haulers are not the enemy. Long haulers are new kin, who are also learning that it is possible to get sick and stay sick and not have anyone care- just as we did however many years ago. There is great risk of harm here for all sick people, but that harm will largely be perpetrated by the medical industrial complex. ⠀ ⠀ We need to direct our frustration towards the systems that have failed us, with a goal of prompting change. I am furious with the medical industrial complex that has thrown us aside rather than admit they aren’t omniscient. I am angry with governments and funders that have refused to fund research that might give us all answers. I am not angry at long haulers, who are wrestling with the concept of chronic illness and medical abuse/neglect in the midst of a pandemic. I am afraid, I feel bitterness, but I welcome long haulers to the chronic illness community. I call for unity, not division.⠀ ⠀ PS: Since COVID disproportionately affects people of colour, in part due to inaccess to resources allowing people to physically distance, here’s your reminder that long haulers will not be solely affluent white women. ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminism #sociology #biopolitics #sick #SickGirlsClub #illness #spoonie #SpoonieLife #CovidLongHauler #CovidLongHaulers #CovidSurvivor #CovidRecovery #Covid19 (at Toronto, Ontario) https://www.instagram.com/p/CDCeMh3DKmU/?igshid=1b2uqr44b4iw7

#PRIDEISAPROTEST. 🏳️‍🌈 I didn't know what "the first Pride was a riot" meant until this year. I've felt protest should be disruptive, but couldn't imagine why it would be necessary to do more than disrupt. That was internalized respectability politics, that was the model minority paradigm, that was the status quo working within me to silence the voices it oppresses. Peaceful protest did not protect Black, brown, and Indigenous lives. Peaceful protest did not disrupt the racism, (ableism, and transphobia) so deeply ingrained in our white supremacist power structures. 🏳️‍🌈 How has your idea of protest and revolution changed in 2020? How will that ideological change manifest in your actions? 🏳️‍🌈ID: A cartoon rainbow over a grey background. Underneath the rainbow is red text in a bubbly retro font, "Pride is a protest." 🏳️‍🌈#Pride2020 #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminism #sociology #biopolitics #sick #SickGirlsClub #illness #spoonie #SpoonieLife (at Toronto, Ontario) https://www.instagram.com/p/CB9TpvtjRSa/?igshid=1k6251s337mi3