Nicole Schroeder

 how are you doing? 

I'm not doing so well. From a practical physical standpoint, I'm high risk as I have a slew of chronic illnesses (Ehlers Danlos Syndrome, Mast Cell Activation Disorder, Arnold Chiari Malformation, asthma, orthostatic intolerance, and gastroparesis). It's a complicated set of comorbidites that are tough to balance when the world is in full working order, but it's even harder to accommodate in times like this.

I have a very limited diet - about fifteen items - and when they're sold out at the store I don't have the option of choosing something else. I'm walking on eggshells trying to ensure that all my physical needs are med because I can't afford to visit the hospital for any reason - for IV infusions or anaphylaxis or a joint dislocation. I can't trust that exposure to an emergency room will be safe.

Moreover I feel the weight of internalized ableism in new ways. I don't want to redirect physicians away from the pandemic if I can prevent it. It feels like a crushing responsibility, to feel like I'm alone in all of this. I can't ask for food orders as I can't receive substitutions for my diet and I can't afford to receive an order missing crucial items. Yet I'm also trying to limit my exposure to stores, which means that I've just had to go without some key dietary items.

The financial burdens are higher than ever as well. I've had to order some over the counter medicines in high quantities because I can't afford to go without. Quercentin, which is being boasted as a helpful drug in the fight against COVID-19, is something I take in high doses daily to avoid anaphylaxis. It's been incredibly hard to secure. There's a frenzy of hoarding medical supplies that chronically ill people can't seem to avoid. If we neglect to order in large quantities, we face a marketplace dominated by able bodied individuals buying up items that they don't even know how to use (ie masks) and don't truly need. On the other hand, when we buy in large quantities, we know that our own community will go without, especially those facing hard financial situations right now who can't afford to stockpile necessary goods. 

As if the physical constraints of world in pandemic were not enough, the mental and emotional burdens are also high. I'm trying to find joy in the everyday, but it's a fight. Watching Crip Camp on Netflix offered an outlet for all that I'm feeling. I'm pretty sure I cried the entire time! it was the most cathartic experience to say "these are my people" and "look what they did." I'm so incredibly proud of the improvements they fought and sacrificed for to give to the world. There is far to go, so so so many things to do moving forward, but I'm incredibly thankful for all that has been achieved. It came at a cost, a cost of life that perhaps the documentary doesn't highlight, and that cost is sacred to me. It gives me hope that we have always fought the blatantly eugenic frameworks proposed by able bodied people. It gives me hope that we'll fight the current statements about saving the economy at the disproportionate cost of disabled lives. It's depressing that the everyday mindset of the average American hasn't changed, but disabled individuals thrived and survived in the face of these estimations before, and the documentary explicitly highlights that fact.

how do you feel?

I feel overwhelmed and anxious all the time these days. There's only so much planning you can do as a chronically ill person, and on the whole we're good at planning. I have a go bag packed by the door for hospital visits all the time because I can go into idiopathic anaphylaxis, and I learned long ago that it's better to plan than to be caught unawares. But now it sits by my apartment door like a forewarning of that which is to come. The everyday tools that I saw as adaptations to this failing body are now coded in as liabilities. There's a constant reckoning about my individual fragility, and the fragility of the disabled community, that I haven't had to wrangle with for a long time. 

It's been heavy - to plan for this. I'm incredibly privileged to be in a position where I can work from home, but other major life changes have come to a halt. I was supposed to move home this spring to get help with my ongoing medical conditions, and that's been placed on pause because my parents are considered essential workers and still come into contact with people everyday. We had to decide as a family that I was more safe isolating alone in my apartment. My conditions, however, are genetic, and my mother and brother are high risk as well. My parents go to work fearing for their own lives, and ours as well. 

There have been hefty discussions, about wills and important papers and funeral plans. I've been through brain surgery. I've gone into anaphylaxis three times. And yet this has been the hardest discussion to have as a family. We've made end-of-life plans before, but never in these circumstances. It's always been an "I'll be with you till the end" type of conversation, but we can't offer that now. We know that if any of us are hospitalized for this, we might never see one another again. I can't afford to go to appointments at my specialists offices. I have medical debt that I'm wrangling with. It's incredibly complicated to manage when you can't afford (financially or just physically) to see a doctor. Moreover any appointments to just manage your chronic condition is generally on hold for now. 

It's been incredibly painful to watch friends and coworkers flout the stay-at-home directives. It's been painful to think that this can take everything from me, but when I express those very realistic stakes everyone tells me I'm overreacting. How bad does this need to get before people see? How many lives need be lost? How overworked our medical professionals? How much sacrifice need happen before every individual take this seriously? I look at the news everyday and see horror stories of people coughing on food in stores, explicitly saying they're sick, laughing at how panicked people are. How is this even real? How can there be so little sanctity for life? For the elderly? For the disabled? 

There's a moment in Crip Camp where one activist says, “The world doesn’t want us around; the world wants us dead.” I feel that now more than ever. I've read hospital statements about utilitarian ethics and cried myself to sleep. I've dreamed of dying. I've wondered "who might live the life I was supposed to? What will they do with the time? How will I die if I'm turned away as a complicated case? Will I be alone, at my apartment, struggling to breathe?" It's easy to get lost in the what ifs of this. As someone who plans every little thing, who has hundreds of pro/con lists to make decisions, it's hard to ignore the deep dive that your mind can quickly go down. It's very hard to have hope. 

It's also been aggravating to listen to people complain all the time about isolation. The disabled community is particularly loud, especially on Twitter, that isolation restrictions are not new to us. The average person is struggling in isolation, but we have struggled all the time with issues of inclusion. I want to say to people, "this is how I feel every time you invite me somewhere inaccessible." Every time people say "oh I'd love to just be home all the time." It's not so easy. It has its own complications. There's a huge difference between voluntarily choosing to be at home and being forced to. It's lonely. It's depressing. It's really really hard. And to be honest for all of those a few weeks into this - you don't know what it's like to know this your forever. The world will open back up to you after this - perhaps in shambles - but it'll be open to you. It will continue to throw barriers at us. And in your rush to be free once more you will forget what it was like. You will forget our needs - I can just feel it. I'm not so naive as to pretend a taste of accessibility will keep these options open in the future. All of the accessible improvements we've found - working from home, teleconferencing with doctors, accessing mental health services digitally - I can practically taste the rollbacks. I have visions about those in powers saying "well that was during a pandemic, you can't expect us to offer those services all the time, it's too costly." 

what do you need?

I need people to value human life, even the lives of those around them, more than their own desires for temporary satisfaction. Don't have a cookout. Don't treat this like a vacation. Don't exercise with a buddy. Don't travel widely. Do support your friends/family/community. Offer to pick up items for those who can't go out themselves. Check in frequently with individuals you know are alone. You might have the privilege of isolating with family or your partner - not everyone has that. I know it's hard to be in a house full of people and desire space from them, but the inverse is also true - those of us who are isolating alone are lonely. 

I need people to take my words seriously. I need someone to go "I know" when I tell them I'm scared. I need them to treat me like a rational adult. I'm getting a PhD in the history of disability and medicine. I know the ramifications of pandemics, perhaps better than anyone outside of the field of medicine. I've devoted nine years to studying history, and four to studying the interplay of disability and medicine. I just wrote a chapter of my dissertation on the arbitrary division between chronic and acute, disabled and able bodied in colonial America. I need people to check in and encourage my work and remind me that it is worth the emotional pain of doing it, because right now I don't want to write on the rise of medical ethics, but it's more important now than ever. 

I need to see communities doing the right thing for one another. I need to see universities stop their hiring freezes. I need to see colleagues approach teaching online like a challenge that we are collectively a part of. I need to see people value things that are more meaningful than money. I need to be reminded that for every person flouting directions there are more people doing the right thing.

what do you wish was different?

I wish we hadn't gotten here, but here we are. I wish that the US had prepared as soon as there were hints that this might evolve. I wish that people could tone down their egos. I wish that people realized that saving a life is just as fulfilling as having a birthday party or a wedding or a special event. I wish people could frame the situation as "I could kill someone doing ______ or I could save someone by staying home." In the scope of what's being asked of you it is so very little. And there are so many people in retail, or with children at home, or in essential services, who would love to be able to stay home and protect themselves and their families. It's so incredibly selfish to think your fun is worth more than people's lives. 

I wish we were more prepared. I wish that accessible spaces were already implemented. No one would worry about door handles or touching anything in public bathrooms if everything was accessible. I wish we had national health care. I wish that we had a system that isn't surprised by this. I wish American individualism didn't convince people that they can do whatever they want. I wish we had more strict regulations and fines for those flouting the rules. It just dismays me that we could end this if people did the right thing, and flagrant behaviors are blowing this out of proportion. Other countries are actively offering models for us but American exceptionalism is blatantly ignoring the fact that we have the highest number of cases of any country at this point. 

Leah Lakshmi Piepzna-Samarasinha coined the term "Crip Emotional Intelligence." What crip intelligence, whether emotional or otherwise, that you have developed is coming in handy right now? 

I was diagnosed with EDS as a sophomore in undergrad at nineteen years old. It was a total shock to me - I thought every person was just in pain all the time. Doctors gave me no answers, despite my frequent statements that something was wrong. I came to normalize joints slipping out of place. It became a regular habit to come to laying on the floor after passing out. For years I dealt with medical gaslighting. Every excuse in the book was used. I was a woman so obviously I was anxious. I was young so obviously I was fine. I looked put together so I must not be in that much pain. I was pursuing higher ed so obviously things weren't that bad. Every single thing in my life that I fought for became another tick on medical chart against my testimony. It took years of complaining and convincing doctors, years of failed appointments, to finally find someone who looked at my medical history and examined me with an objective eye. And for my mother, who has the same genetic condition, it took even longer. 

I think those barriers to access forced me into developing a more overt commitment to resilience. I forced myself to speak out - verbally or through writing. Securing a diagnosis, as frustrating as it is to admit, opened the doors to embody disability in a way I had never known I could. My experiences were something more. Something to connect to a wider set of activists. I didn't think of my everyday struggles as personal issues anymore. They were systemic barriers to reconfigure. I no longer placed the blame on myself. 

That revelation didn't happen right away. It took reading multiple books and essays and poems and listening to speeches and podcasts and reveling in the words of other disabled activists. I began to identify with their struggles, and to see my words as being capable for change. I think the disabled community taught me resilience in the face of hatred. It taught me to speak up, speak loudly, to communicate across all avenues. What more did I have to lose, it asked, than the well being I had already lost? Resilience in the face of hatred, resilience to combat the pace of a fast moving world, resilience to uplift those kept in silence. 

Learning emotional resilience in the face of those who don't believe you, don't care about you, don't want you to thrive, is a gift that seemingly is handed down from the first activists to those just coming into their disabled identities. In times of fear resilience is what gets you through. It helps you have hope despite skewed odds. It reminds you that just by trying you are making a difference. 

what are you dreaming of?

Going to sleep knowing that those I love are safe and waking in the morning without fear. 

Nicole Schroeder is a PhD Candidate at the University of Virginia. Her dissertation studies the intersection of disability, welfare, and medicine in early America to prove that disability is a social construct built from systemic barriers. Some of her digital pedagogy can be found here: https://uvalibrary.maps.arcgis.com/apps/MapJournal/index.html?appid=1158780d621e4ad5b07a2c25df597554&fbclid=IwAR25ayyjQp0j6s6RBeUzrxRANyRQJZXe6IkiLKOq9jCrHnfvb2OT7uWg8dc

Interview by Bára Hladík
Read by Malek Robbana