It is it 

Sorted by: Theme: Ableism

Written Story by Tom

It is it 

I had Covid twice

I was more dead than alive

pale gasp walk to grocery

cooties consuming me

life fading lungs

I dreamt of stairwells

It’s done, the grandmas are in graves

masks in storage, we move on


its to remember and be kept

hurt stories and names

I love you all, kneel and cry

in a field of tranquil flower

my cup of mourning is full

among the rest

on this bus ride

I don’t want to be alone

sit next to me

and we will hold behind masks

I come home from work at a convalescent home

people die constantly

stand here and hold a hand

as it grows cold

watch the beeps diminish

again, cease breath and slide

its not time yet to cry

we have to go on weaving

we held death and shoved on

a mourner, with frown and bouquet

look at us on the bus

a forest away with lilac of death among

we should come to each other

sit with, tell your grasp of the raft


a vanishing point

I went among prairies

to mourn better,

bring cloth for graves

on hard roads

I went away with seekers

slept rough and fought truth

where I wanted to walk was all water

when I wanted talk, a bus bench

so I willow in vanish sorrow

among hay feather glass birds

you died in Covid

and we leave that to here

arms draw inward

geese weave reeds

honk and make silly the morose

hands sift loss among moon wool

inward we mourn

as lamps close

Written Story by Anonymous

I am a nonbinary physician of color. I actually worked for the state governmental COVID 19 response here in Oregon, as my first job in this state.

I felt tremendous responsibility and pride in doing the work I did when I did it, because  there was an acknowledgement of community stake, partnership and investment with the way  we did our work. Blue state vs. Red Federal policy clashes somewhat helped with the ability to  do the work, above and beyond what the CDC was publishing in those days. We were in a group  of about 18 physicians and scientists writing policy and guidance from a variety of lived  experiences. I contributed heavily as a physician of color and made some of my first few friends  in Oregon working in POC predominant teams as the scientific liaison to state based community  engagement work. I was publicly shamed and ridiculed on the internet by trolls and those at  odds with the state’s policies that emphasized community action and non- pharmacologic  interventions to keep everyone safe from a new, scary and unpredictable threat. Yet through all  this, I persisted.

I ended up leaving my position in early 2022 when after more than a year of conflicting  policies, shifting narratives, the politicized CDC influence on state-based policy making was too  great and overrun by individualistic public health policies to an airborne pathogen. For  something as contagious as COVID-19 and with ongoing high mortality and even higher  morbidity, an individualistic approach just serves to marginalize the few- the disabled, the  elderly, the chronically ill, and really a lot of female bodied people without any of the above  conditions with the disproportionate and increasing toll of long Covid in all these populations.

Out of concern for my own safety and to avoid new disability, I have continued to avoid  getting infected. These days it has been getting increasingly difficult. I spent the 6+ years of my  medical training suppressing and coping with a moderately disabling condition to know how  terrible it was to feel even moderately disanled compared to peers. A friend even casually  mentioned one day that I was a 27 year old in a 40 year old body. Ableism exists and even worse  so for people in the health professions. I also don’t have the luxury to assuming that my family  with chronic illness including immunosuppression will survive repeat COVID infections without  worsening of their chronic conditions, or loss of their transplant organ.

Since COVID-19 continues to kill 1.5 times as many people as seasonal influenza, and  maim even more even in the times of Omicron sublineages, I don’t have the choice to ignore it.  Ignoring it could potentially risk my livelihood, my intellectual ability, including the brain that  got me through years of medical school, and the physical ability that allows me to enjoy life  without pain and restriction.

As an extrovert, my life has changed dramatically. Negatively? Not necessarily. I’m  selective with my friendships, I have stopped seeing a lot of my friends who have moved on  mostly because of dismissive or slighting comments, and unwillingness to make  accommodations to see me. My life is full of outdoor patios, and masked brief indoor outings  here in the states. I have traveled and continue to travel with my partner- albeit in lower  frequency than pre 2020 – in fit tested n95 respirators. I got to go to Japan to experience life in a collectivist society, even if for a brief while, earlier this year. My respirator kept me safe, as did  community masking through all kinds of crowded venues.

The costs of my life are that I know more, and care more about chronic illness and the  dangers of reinfection. Much more than my immediate family, my partner and oftentimes some  healthcare providers. That’s been a side effect of always staying appraised and up-to-date on  this virus and its accompanying set of illnesses. It’s a burdensome role, shared by many other  new branded COVID experts, even larger of a burden for those studying long COVID, those  studying end organ system and immunologic impacts, who then have to share this data with the  public. It’s a tremendous moral injury to be a caregiver of people and of populations in these  times.

I returned to clinical practice for a short while between policy changes, for a half day per  week from the summer of 2021 to 2022. I had a mostly substance use reduction based practice  and felt uncomfortable in increasing workloads of COVID-19 positive patient care that I knew  were upcoming especially with increasing community transmission. However, with societal  reopening and the end of the mask mandate on transit, my commute on crowded max trains  got increasingly uncomfortable, and especially so during times of high community transmission.  I left in-person clinical practice, a year after I had re-entered it. I feel increasingly reluctant to  return especially with the loss of universal masking in healthcare settings even more recently.  Unfortunately, this virus is not at a virulence that I can tolerate workplace exposures without  reasonable mitigation. Despite some personal and group based advocacy I engaged along with  others, mostly disabled, suffering from long COVID, or other chronic illness that puts them at  risk, we failed to achieve a stay on healthcare masking. I have been lucky enough to not require  frequent healthcare services for myself during this period of sustained viral infectivity and  severity combined with falling mitigations. But these compounded losses as a healthcare  provider, I will grieve for longer, and more deeply than some of my other social and community  losses where I could rebuild and forge new connections from the small but still strong  community of people who care about community caring, love, support and wellness.

The only times I feel concerned for my wellbeing and mental health are in the gaslighting  and minimizing comments by healthcare providers, and colleagues both in public health and  healthcare who have “moved on” and make comments to indicate disapproval or worse,  incredulity.

I knew, years ago, when I entered Healthcare as a profession, that this was a place for  healthy people, who “worked out”, who experienced no chronic illness, both physical or  behavioral, or none that they could show transparently. This has been highlighted by the  Oregon Medical Board’s decision to remove stigmatizing language on the attestation forms for  physician licensure around mental health and substance use. But cosmetic fixes like this don’t  dismantle the very real systemic ableism in healthcare that continue to persist. Some of the  same reasons for physician suicide I see replicated in the gaslighting, marginalization and  repeated dismissal of physicians who desire and have very real physical needs to avoid and  minimize infections and reinfection with COVID as a reason to avoid or reduce the chance of  disability. If our healthcare workforce, agencies and systems can’t even care for our own, who  will care for our patients?

Written Story by J

Summer 2021 was a time in the middle of the pandemic where many folks who could and  wanted to get their COVID-19 vaccination for protection, were able to. With a direct line of  communication to the Multnomah County Public Health Department and the Oregon Health  Authority, community members were able to remind folks of our severely ill, at-risk, and  homebound community members who were unable to leave their homes in order to get  vaccinated. Specific teams were assigned to help alleviate these issues, although no 211 staff  understood how this was supposed to work nor that a team even existed to problem solve  these issues.  

All this said, for some of us that were very high risk for COVID-19 complications, due to  anaphylaxis to excipients such as Polyethylene glycol (PEG), Polypropylene glycol (PG),  Polysorbate 80, and other ubiquitous ethoxylated excipients, the risk of dying from anaphylaxis  to the COVID-19 vaccines was a somewhat greater, and more immediate risk than dying from  COVID-19. The issue, however, was that these same excipients that could cause anaphylaxis  from vaccine administration were and also are in all of the available COVID-19 prophylaxis and  COVID-19 therapeutics, except IV Remdesivir. Although the FDA had approved IV Remdesivir’s  use in the outpatient setting, there were zero hospitals and clinics in the entire state of Oregon  that were equipped to provide IV Remdesivir to patients in the outpatient setting.  Allergist/Immunologists couldn’t even access the vaccine for their clinics to give to these  patients in smaller doses to test their tolerance.  

During the extreme heat waves that occurred in July 2021, cooling centers were opened. For  those unable to vaccinate for protection, unable to access COVID-19 prophylaxis, and unable to  access safe-for-them COVID-19 therapeutics should they become infected with COVID-19, going  to a community cooling center to escape the heat, was not a safe option… even when the  temperatures got up to 105 degrees F inside the home. Trying to access cooling equipment  being on OHP Open Card was impossible as there was not a program, like the CCO’s had, for  patients to access cooling equipment, even during one of our deadliest heat waves in history.  

This writing is what came out of this experience.  

July 2021  

Dozens of people died from the heat last week.  

The case manager apologized and said there was nothing they could do. It was either a public  cooling center and the real possibility of COVID-19 or nothing. Choose. There might be a  program that might help you access an air conditioner, but you have the wrong insurance. There  is nothing for you. I’m sorry.  

Sometimes, oftentimes, it feels useless spending every ounce of energy you have fighting  insurance companies, fighting poverty, fighting the racism and ableism that permeates the air,  the same air giving life. 

When it comes down to it, no one really cares whether a person lives or dies, well, until they’re  dead. Then we hear the honorifics, the should haves; but really, if we cared, we wouldn’t build  institutions whose job it is to grind people down. To say no until folks just die.  

There is no happy ending.  

It’s only drudgery, the drudgery of plodding through cold muck in a dark, black cave. The same  cave so many before you trudged through before, are trudging through with you now, but  within their own solitude, into infinity.  

Maybe it’s only when you briefly brush elbows, millions of times, that enough friction is created  to produce heat, a brief glimmer of light. 

Maybe these sparks produce a fire so large so as to burn it all down. All of these stifling systems  that suck the oxygen out of every room in every clinic in every hospital in every region – they  suck the oxygen out of each cell who composes its own part in the symphony that sings an  organism into being. Maybe through destructive fire, and only through that, the phoenix might  be reborn.  

But that would spell hope. And we all know that hope is the traitor, the knife in one’s back.  Besides, fire requires oxygen. So no fire. No phoenix. No rebirth.  

Dozens of people died in the heat last week.

Written Story by Anonymous

In the beginning of COVID, there were two things I feared: the disease itself and the fear of  getting COVID. As a disabled person with multiple medical issues, I listened to the news reports  of the lack of staff, the lack of personal protective equipment, the lack of facilities, and the need  to categorize or prioritize people who became infected by able bodied or disabled. The able  bodied were identified as contributing members of society, less expensive to treat, and more  likely to survive and recover from the disease. I felt fear and anger that should I seek treatment  for COVID as a disabled person, I would be refused admission to the hospital or admitted to the  hospital and then left in a corner to die. 

This fear created an extremely high level of anxiety as I found myself isolating myself from  family members and friends in order to not be infected. Those family members included people  older than me with disabilities as well and serious chronic health conditions. Knowing that if  they tested positive for COVID meant that they would be given a death sentence. How could  their age and their disabilities be considered an inconvenience for the health care system? How  could my disabilities be considered the benchmark for whether or not I would receive care. I  have never felt so unwanted by society as I did during these early days of COVID. When I spoke  out about the ranking of able-bodied people over disabled people to receive treatment, I was  shocked to hear able-bodied people tell me that I was a selfish individual. That if I had done  more to be healthy before COVID, health care providers would not have had to make this  decision. They acted as if my disabilities were my fault and as if my disabilities would simply go  away if I wanted them too. 

I felt like I had to hide myself away to protect myself not only from the disease but from society  itself. I missed my grandson being born and had to view him through the front window of his  living room. A piece of glass between us to protect him and myself. Months later after I was  vaccinated, I was finally able to hold him. I cry writing this now as just picking him up in my arms  felt like the world might be becoming right again. When I was vaccinated, it felt like every part  of my body where I experienced lifelong conditions and chronic health issues was attacked. I  could barely walk and it felt like every nerve was on fire. I had little strength or ability to  complete the smallest tasks. This lasted for weeks. When I brought up my symptoms, I was  ignored initially. I suffered endlessly with no relief in sight. Eventually, those symptoms would  diminish but I still experience pain in my legs and a feeling of constant exhaustion. I can only  hope that our society has learned from COVID to make sure that everyone in the community is  protected and cared for no matter what the crisis, disaster or emergency. No one should feel  isolated and fear seeking medical help as a disabled person.

Written Story by CJ Smith


Outside of my windows live trees 

They continue as 

Seasons march on with vibrancy of autumn 

Bare branches scratch at a wintry gray sky 

Then comes citrine buds and pop they open 

Inside leaves stretch and open wide 

I think of my bedroom as a child-wished treehouse 

Yet along comes a virus, virulent and dread 

It can’t stop the trees outside my window 

It can’t stop the seasons from changing 

Still its morbid threat stops me 

Stops me from walking freely out into the seasons 

The seasons go on and my trees go on 

But immune suppressed I do not 

My room provides me with safety 

Will keep me safe until people start to see 

Covid needs to stop 

Its grasping arms outstretched 

Needs to not limit me anymore


Written Story by A. Smith

Creativity for Equal Access

Because of the pandemic, we currently live in a world where immunocompromised and other disabled and high-risk people don’t have equal access to society. 

Somehow, we’ve rewound and rewritten the last 50 years of disability history, protest, and legislation. 

COVID is still here, and everyone is still being impacted by it in many different ways, even when that isn’t always acknowledged. It especially now feels so present for immunocompromised and other high-risk people, because the societal and governmental desire to “move on” has left many vulnerable people behind. When even a visit to the doctor’s office now provides an increased risk of severe illness or death for more vulnerable people because masking is no longer being used for infection control, higher-risk people face a much harder time trying to protect themselves. I find it so immensely difficult and burdening to try to protect myself, and this burden has expanded a lot because we’ve as a society largely stopped trying. 

Instead of trying to reduce exposure, we’ve stopped counting cases. 

Instead of the most simple act of care – wearing a high-quality mask when sharing spaces with others indoors, because COVID spreads the air – we often refuse to do so, choosing instead to leave large numbers of people out of society instead of doing something we find slightly less convenient that would allow for other people to access public spaces. 

And with each of these things, the world becomes less and less safe for vulnerable people.

What the world is missing is creativity. Many disabled people have learned how to be innovative and creative in order to reshape the world to match their needs. My disabled parents taught me this from a young age – to change according to the circumstances; that a life well lived includes creativity to address what you experience. I have learned this even more as an immunocompromised, mainly bedbound adult. Adapting things, being creative, you can not only make things work, you can make them work well.

The world was so much more equal in access for many disabled people starting at the beginning of the pandemic (a pandemic that is not yet over). Suddenly, I could watch a favorite performer’s concert online or tune in to an opera or join in other virtual opportunities. Although I can no longer work so it did not personally affect me, many people were now allowed to work remotely – something which I had been denied by a job years earlier (“If you’re well enough to work from home, you’re well enough to come to work” is what HR told me). The world became more accessible in 2020, because everyone needed accessibility. 

But over the last couple years, the world has become less accessible again. Most food places have stopped offering curbside options, even though immunocompromised people can’t safely go into spaces where there are a lot of unmasked people. The world largely stopped the online performances, the virtual conferences, the accessible options disabled people for years had advocated for. Instead of keeping a more accessible infrastructure, we have dismantled it in our attempts to claim some semblance of “normal”. But nothing is “normal” yet, and normal cannot and should not include inaccessibility. 

Indeed, we’ve retreated in our accessibility even further than where we were before the pandemic started. We’ve gotten rid of mask requirements that allow immunocompromised and other more vulnerable people to more safely access areas of society such as the store, doctor’s offices, and public events. This creates a culture where higher-risk people have to risk getting a virus that can cause severe illness or death to access public spaces. As disabled advocates teach, public accommodations belong to every person; they do not only belong to people who consider themselves at less risk. And yet, societally we are currently ignoring the equal rights of higher-risk people and see it as okay, because we want to avoid physical reminders, such as masks, of the traumas we’ve experienced and continue to experience. 

We’ve largely ignored that in the last year, two of our main tools – monoclonal antibodies and the preventative treatment Evusheld – no longer work because of how COVID’s evolved. Many people often act as though higher-risk people need to just get on with it and stop taking precautions, even though a lot of COVID remains in our communities and the CDC still tells immunocompromised people to avoid crowded and not well ventilated spaces and to mask and stay away from others if they have to go into such spaces. The World Health Organization often reminds people of the dangers of Long COVID and how many people are still passing away from COVID. Meanwhile, many act as though “life goes on,” but this is with the loss of so many people and of other people continuing to be excluded, and that affects the world in many different ways.  

We need to be better, and we need to be creative. If we’re creative, we can reduce COVID transmission and ensure that disabled people have equal access to society. 

Society as a whole ran from staying at home the moment that they could, even though the early days of staying home were largely the same as my every day experiences as a mainly bedbound person. It’s hard to think about your everyday experience being something that others can’t wait to move away from. But I’ve learned how to adapt, be creative, live my life in a way that meets my needs and is beautiful. Disabled people have tried to share this knowledge with the world over the past three years, and the world has largely ignored this in favor of the “normal” that we wish we could go back to. 

However, we as a society could improve so much by building back creatively, innovatively, accessibly. This can include simple things like wearing masks in public spaces, requiring masks in healthcare settings, and improving ventilation. It’s not too late for us to create a more accessible society and ensure equal access to all members of society, all of whom have an equal right to public spaces. We just have to be creative.

Written Story by Adriana

My name is Adriana. I was an essential worker. I worked in healthcare as a medication aide and  caregiver. Something I’ve been doing since 2006. I enjoyed it. I wish I could go back. After I got  covid in late September of 2020 my whole life changed. I lost my voice cause I yanked out the  tube that I had down my throat. Couldn’t speak without taking a breath in between words. Was  hospitalized for way over a month. Lost close to 100 pounds I believe. I couldn’t stand the first  time I tried to get out of the hospital bed. I had staff on either side of me in their protective gear  assisting me with standing and I proceeded to buckle and had to sit back down. I needed to  learn to walk all over again. I was using a walker and wheelchair. I couldn’t eat either. You see,  I’m diabetic and have gastroparesis. Anytime my body goes through a trauma I end up getting  sick and unable to eat without being sick. I ate chicken noodle soup for weeks after I got home.  And Gatorade. Slowly introducing solid foods. I had many falls at home since then. Once even  busted my lip open and needed stitches when I passed out just from walking one room to  another. My body wanted me to live. My doctor was surprised to see me alive in his office. If  that’s what you could call it. I was sitting in a wheelchair with a mask on. Hunched over. My  leggings that used to fit looked like pants on me. Months later, I started losing my hair. I used to  have thick hair. Now I don’t have much. My mind used to be organized. Work was ok for me  before. Now my brain feels like it’s in a fog most of the time. I can’t work anymore. I don’t have  the strength to do basic cpr or climb up stairs. Carrying a bag of groceries is hard. Walking in the  grocery store is near impossible as I get out of breath so easily. I have gone to physical therapy.  If the vaccine was around before I had covid, I would have gotten the vaccine. I remember  thinking so many times that I can’t do this anymore, this is too hard. I don’t want to try  anymore. I had so many people checking in on me every day. I remember thinking that I wanted  them to stop that. To just let me disappear. My depression was at an all time low. I’m such a  people person. I love giving and getting hugs. And when covid arrived, that stopped. And then  being isolated with covid unable to work for months after. And when I tried to go back to work I  realized still that I had a long road ahead of me. I don’t work. It wouldn’t be safe for me. I miss  my residents. I miss the social aspect. I miss what covid stole from me. I’m not who I used to be.