Derek Schmitz's Blog, page 3

Upcoming Conference Appearances

So excited to announce I’ll be at two conferences in the next few months!

I’ll be at the Council for Exceptional Children (CEC) 2023 Convention & Expo in Louisville from Feb 28-March 4, delivering a presentation on Youth Engagement in Transition Planning on the 3rd with Alexandra Wong and Adene Karhan.

And, I’ll also be at the National Youth Employment Coalition 2023 Annual Forum from April 4-6, delivering a presentation on Intersectionality on the 5th with Abeer Sikder and Mary Greenfield.

Come see us as we highlight the work of The Center for Advancing Policy on Employment for Youth (CAPE-Youth)!

I’m on Disability After Dark with Andrew Gurza!

Hey, y’all!

I recorded an episode of Disability After Dark with Andrew Gurza and it’s out now! We discuss life as a disabled and queer teenager, my advocacy journey, my partner, and more! My episode, “Episode #320: Working toward a world where queerness and disability is loved and accepted, not just tolerated w/ Derek Schmitz” is out anywhere you podcast!

A NEW EPISODE OF DISABILITY AFTER DARK IS OUT NOW. W/ @derekischmitz. We talk about disability, queerness, activism and so much more. Out now wherever you podcast pic.twitter.com/gr9lSxrT4z

— Andrew “guts hurt” Gurza (@andgurza) December 11, 2022

Andrew was a great host and I look up to them as a great advocate and person, too! Go check out their work and support them by engaging with their Twitter and Instagram accounts (both handles @aagurza)!

I can’t wait to read and hear y’all’s reaction to my appearance! I hope you enjoy listening to it!

Colorado Springs

Hello. I wish I wasn’t writing this. I don’t even know where to start. Trigger warning for discussions of mass shootings, hate crimes against LGBTQ people, and Transgender Day of Remembrance.

This morning, I woke up to news alerts of a shooting at an LGBTQ+ nightclub in Colorado Springs. The AP, CNN, and Washington Post dominated my notifications as I shut off sleep focus. I felt like I had been punched in the gut, but honestly, I wasn’t surprised, nor was I shocked. I was (and still am) infuriated and I am heartbroken.

The state of LGBTQ+ affairs (primarily all the right-wing LGBTQ hate) and gun laws in the US allow this to happen. There are so many more that we don’t know about, they don’t hit the news. I was just talking with Andrew Gurza, a gay and disabled person, for their podcast the other day and remarked something along the lines of “I’m pretty careful when I go out because I don’t want to be hate-crimed.” It’s so sad and so utterly infuriating that these things happen every single day here in the US, to people just trying to exist. We should not have to fight to be ourselves or to love who we love. We should not have to fear for our lives when we do so. But, we do.

There are no words, no thoughts that I can muster that describe how utterly fucked up everything is right now. We should not be staring death in the face every time we go out, or have to make calculated decisions about if we can hold our partner’s hand in public. We should be protected. But, we aren’t. The Equality Act is still sitting on a desk. The Senate passed the marriage equality bill, but the House has yet to vote and they regain a GOP majority in January, so that’s not happening. There is so much that should be done to protect us that simply isn’t.

And, today, on Trans Day of Remembrance, yet another shooting, more lives lost, and more comrades aren’t here with us anymore because bigotry rules in America. Fuck it all.

Reflections on My Time at the Autoimmune Community Institute as I Exit

Today was my last day at the Autoimmune Community Institute after 13 months of amazing work with the most dedicated team of hardworking volunteers I have ever met. I was Outreach Coordinator. I wish I didn’t have to leave, I love my position, but I needed to prioritize my energy and refocus on my mental health by getting something off of my place, and ACI was, unfortunately, the position that hit the chopping block.

I remember when I first met our founder, Dr. April Moreno, on October 28, 2021, after communicating over email after she hosted a Fireside Chat at the Inaugural Autoimmune Summit. We instantly clicked and shared so many of the same philosophies when it came to research inclusion and the autoimmune community. I was so eager to start wherever she wanted me that I was introduced to Daniel and Jaideep, the other members of the marketing committee that same day. I started as the social media intern handling Twitter, with my primary goal and responsibility being sharing 1 tweet per day on @ACICommunity from a bank of quotes Daniel developed to improve awareness of autoimmune conditions. My first tweet went up on November 5 and there has been at least 1 tweet/day up on @ACICommunity pretty much every day for the past 368 days.

In Feburary this year, as my role expanded to include outreach with other organizations, developing press releases, volunteer recruitment, and work with our sister organization, my title was updated from Marketing and Research Committee Member to Outreach Coordinator.

In the last 271 days, I have:

written for our blog twice (check out Crash Course in “Crash Prep” and Vocational Rehabilitation Centers are Useful, Hidden Gems in Disability Support)continued putting up 1 tweet per dayanswered Twitter DMsfacilitated volunteer recruitment and mixingassisted with research developmenthelped throw together the Autoimmune Health Equity Summit with limited time after technical difficulties almost rendered the event impossibleput out 5 press releasesmade ACI a partner with CreakyJoints for a #CreakyChats sessioncohosted the LGBTQ Community Awareness for Public Health event with April through the Public Health Podcast and Media Network, anddone so much other behind-the-scenes work with our amazing team—April, Alanna, Daniel, Jaideep, and Jen—that I’m beyond grateful for.

It’s so bittersweet to be closing this chapter, but I have hope that the amazing team I’ve had the honor to have worked alongside for the last 13 months will continue to thrive and continue our mission of improving health equity in autoimmune research, advocacy, and support.

The work continues, and I can’t wait to see where ACI goes and what happens with this amazing organization even in my absence.

Donate to the Autoimmune Community Institute here.

Archived Twitter Thread: Extra Life Game Day 2022

This is an archive of my 11/05/2022 thread on Extra Life Game Day 2022. The thread can be viewed here.

I’m not streaming today for @ExtraLife4Kids gameday because my workload is insurmountable, but I do want to promote my hospital @ChildrensAL for a minute.

They saved my life and I have some of the best doctors in the business. They’re the only standalone pediatric hospital in the state, seeing 670,000 patients/year. They excel in research and partner with
@uabpeds for so many things.

This is my hospital and I’m proud and honored to be the only active patient at the hospital participating in Extra Life.

Learn more about my story and how to donate at https://www.extra-life.org/participant/482366 as I work alongside so many others to #ChangeKidsHealth!

CDC FOIA Update #4

This is the 4th, and unfortunately final, update to my saga of requesting records from the CDC regarding the handling of the COVID pandemic.

Last Friday, the analyst covering my case quoted me a whopping and exorbitant $976 for the processing of my request and gave me five days (until November 1) to either a) fully accept all responsibilities for paying every cent of those fees or b) narrow my request further from the last changes I made on August 17. I didn’t feel as if I could rightfully narrow my request any further without running the risk of losing the thing I started out looking for: the “science” behind the changes to the mask mandates and community levels and if there was any political pressure there. So, as of 4:38pm Eastern time, my request to CDC for “copies of all: 1. electronic mail communications between CDC leadership members spanning dates from Jan 20 and May 13, 2021, about scientific data used to justify the decision to remove the mask guidelines for vaccinated Americans. 2. electronic mail communications between CDC leadership members spanning dates from January 1 and March 4, 2022, about the development and implementation of the new COVID-19 Community Levels.” has been dropped, pending acceptance from my analyst.

I am furious that it ended like this. I gave this effort all I had to achieve one goal: find what the CDC is hiding from us. A lawyer friend of mine called the exorbitant fee his “absolute top, incandescent-rage level frustration with FOIA and its ilk” because the information I’m seeking is public information. I tried reaching around to journalists passionate about this stuff, but with the tight timetable (5 days, of which only 3 are working days) CDC put me on, I couldn’t pull it off.

And for that, I am sorry, not for how the system fucks normal people out of government knowledge, but for not being able to deliver on my promise to find what CDC is hiding.

If someone else wants to give it a shot, email me with the subject line “FOIA Revival”. I have all my documents, my request verbiage, the contact information for the top FOIA analyst at CDC, pretty much everything you need, except the money. There’s no way an 18-year-old relying on Social Security and a part-time job could put up nearly a grand for documents and processing.

I am so angry, practically seething, at the blatant censorship of data and public information by financial red tape I can’t even express it. But I have hope, that young naive hope that all us youngsters have, that this data and all the back-room, whispered emails about manufacturing the “COVID is over” rhetoric will come to light. And, I will do everything I can to help it get out.

Thank you all for your support through this endeavor, I hope you stick around!

Remarks as Outlined for Delivery at Alabama Disability:IN Conference, October 19, 2022

Introduction (near verbatim): Hi! My name is Derek Schmitz. I’m an 18-year-old queer, nonbinary person using they/them pronouns. I’m currently wearing a pink polo shirt, blue glasses, and a little makeup. I’m an author, accessibility consultant, disability advocate, and student, and I’m excited to be here today to discuss cross-generational disability inclusion!

Q1: Tell us about your disability journey

Born disabled with cerebral palsy, and have had ADHD, and autism since I was very young, but have developed arthritis, chronic fatigue syndrome, and anxiety in the past few years– the melting pot of comorbidities.Arthritis dx in 2020 after fighting for 4 years to be heardBeen a disability advocate since 2018, working alongside many others to fight for the rights of disabled people every single day. It’s exhausting, but my work keeps me going and I am honored to be an advocate for my communities.Discuss how gender is related to disabilityToxic masculinity explainerNonbinary explainer“How everything connectsHow being immunocompromised has affected my life during COVIDSegue into next question. Something like: “Being immunocompromised and multiply disabled means I have a lot of needs in the workplace, and there are a bunch of ways employers could make me feel included”

Q2: What do employers need to know about disability inclusion?

Some (could maybe even say “most”) disabled people want to work and can deliver the same quality of work as nondisabled colleagues, but in most instances, we can’t due to the inaccessibility of typical jobs.We need streamlined ways to request accommodationsRemote work and flexible hours are a must.If you could do it “during COVID” (COVID is still ongoing) when nondisabled people need it, you can do it now.As someone with sporadic illnesses, I need as much flexibility as I can get.“I may look put together now, but there are times when I physically cannot move and my ADHD and chronic fatigue make it hard to even think sometimes which means I have to be able to step back and listen to my body first.”

Conclusion: Having all my needs met is the one key thing I need for work. Inclusion starts with making sure everyone is able to participate in the work and they feel safe doing so. It’s up to us to make that happen. I’m so honored to have spent this time with you all and I can’t wait to see how this conference, and my fellow young people, change the world of work! Bye now!

Did I Really Have a Choice to Become Immunocompromised?

This piece will be short with a more venting tone. I’m not editing this much or letting anyone proof it, so it might be a mess. But, stick with me, because I am angry and I need someplace to put this.

As I’ve covered quite extensively in a few previous pieces (like How I Knew I Had Arthritis, Not “Just Cerebral Palsy“, My Journey to Disability Pride, and New Diagnosis), I have spondyloarthritis with sacroiliitis. It’s a specific type of inflammatory disease in which my body attacks my hip and sacroiliac joints because it misreads them as foreign. To stop my body from misreading the joints as foreign, I have to be on immunosuppressants. Without them, my condition is unmitigated and I run the risk of my joints fusing together which would make my body rigid and cause (even worse) pain. So, do I really have a choice?

Some would argue yes because I can choose to not mitigate my condition. They would say it’s up to me to pick between managing my condition by suppressing my immune system or not suppressing it and letting it fester unmitigated. They would call that my right and say I have to live with the consequences of whichever path I choose as if it’s a choice. And, while that’s technically true, I do have a choice, I don’t have a meaningful choice.

I didn’t choose (I literally had no choice) to allow my body to attack itself, but I am stuck dealing with the repercussions of it. Could I choose to stop taking my immunosuppressant medications? I could, but again, the consequences would be catastrophic. So, I can’t, knowing what I know about how my condition works, choose to stop taking them. Stopping them would kill me (either by my joints fucking together too much or the pain being too much to bear).

Because I don’t have the choice to stop my meds, there are also more repercussions. If I get sick, with any virus/acute illness (not just COVID), I run the risk of significant adverse effects (like the time strep turned into pneumonia in less than 48 hours) that could kill me. So, I am a virtual student taking courses at home. I stay in mostly. I wear masks and test when I do go out, the whole shebang. Contrary to popular belief, I don’t like being stuck at home. I don’t like missing vital information and getting sassed at when I ask for a fill-in (“This is what happens when students are virtual or not at school.” It might be, Deborah, but what should be happening is you doing your damn job to fill me in.) I wish I could go out with my friends, or at least see them during the day at school. It sucks sometimes, but the important thing is that I keep my head up.

If you feel this way too, I am with you, and we are in this together. This piece kind of took a curve in the middle of it, I feel, but I just wrote what was on my mind, the whole word vomit, and I’m about to hit publish here at 11:18 am Central Time.

If you liked this article, I would appreciate it if you would consider sharing it or sending me a tip (completely voluntary!) with Ko-fi, Venmo, CashApp, or Paypal. All of that information can be found here if you want it. As always, if you need a listener or extra support, feel free to shoot me an email at derek@derekschmitz.com or DM me on Twitter. Thank you so much for reading!

I’m an Immunocompromised Teen. And I am Angry.

I’m newly 18, I’m immunocompromised, and I am angry. I am angry at the government. I am angry with select family members. I am angry with friends. And, truthfully, I’m furious with the world.

Introduction

When the pandemic started, I was not immunocompromised. Back then, all I had in terms of disabilities were cerebral palsy, anxiety, and depression. (Read more about how I accepted those diagnoses in my piece on Disability Pride.) I knew the pandemic was bad, but I didn’t really think much of it. I followed the guidelines, wore my mask, and went about like everything else was normal.

All of that changed on December 18, 2020. A few short months earlier, I was diagnosed with spondyloarthritis with sacroiliitis, a specific type of inflammatory disease in which my body attacks my hip and sacroiliac joints because it misreads them as foreign. (Don’t quote me, this is just how it was explained to me.) And on that date, December 18, 2020, I began taking Humira injections. Humira is an anti-tumor necrosis factor (TNF) biologic. A biologic is a medication that is synthesized through living organisms and processes. This synthesis allows for proteins, which create the misread immune response, to be targeted (paraphrased from my amazing colleague Daniel O’Leary over on the Autoimmune Community Institute Blog). In my case, the biologic targeted the TNF that liked to be overproduced to “fight” my hip and back. Biologics suppress the immune system; they have to, so the body stops doing the bad thing (in my case, destroying my hips and back). More recently, I also began taking leflunomide, a disease-modifying anti-rheumatic drug (DMARD), which further suppresses my immune system, to give Humira a little “boost” to help it work better.

So, I’m immunosuppressed… in the middle of a raging pandemic, in a state where no one ever takes anything seriously or follows any guidelines. Fuck, what now?

I take every precaution I can, is what. I wear good masks (KN95 or greater). I stay home as much as possible. I test before going out. I stalked the Walgreens website the day Alabama opened up vaccine appointments for my risk category. I do everything I can, taking every precaution recommended, and doing my due diligence in committing to the American ideal of “personal responsibility” to keep myself safe. But you can’t personal responsibility your way out of a pandemic, a fundamentally systemic issue. And that is why I’m angry.

Government Grievances

The government response to COVID, under both federal administrations, has been a complete and utter clusterfuck—an abject policy failure.

Think back to all the times former President Trump suggested COVID was “just the flu” (like the time he literally said “this is a flu” in a press briefing), or that hydroxychloroquine was “good” because he was taking it. This is just the start of one of the worst failures of public health in the history of the United States. And that’s why I’m angry.

When Biden took office, I had high hopes the response would be better. And, it was for a bit. We had widespread test and vaccine access, mask-wearing, and actually decent public health advice for a hot minute. But then, the abled people decided they were done with COVID, and it all went to shit.

On May 13, 2021, the Centers for Disease Control and Prevention (CDC) under Biden made one of the most irresponsible decisions imaginable and removed most guidelines for vaccinated individuals. I’m still trying to find out the actual reason why they did it with my pending FOIA request, but some media outlets report that the change in guidelines was the result of public backlash. I can see that, even if the CDC would never admit it. As I sit here on a Thursday night writing this paragraph, I’m on a call with my partner, who watches me fume and “angry stim” as I review the linked resources and scroll through the Wayback Machine. I am angry. And I have every right to be.

I am angry at this change because it is blissfully ignorant of disabled and immunocompromised people. Here begins the “sunshine and rainbows if vaccinated” rhetoric—one which I will return to in a moment. I feel isolated when everyone is celebrating for no reason: there’s still a pandemic, you can still catch it, and you can still die, even when vaccinated, although the chances are less likely. The removal of common sense public health measures in the middle of a pandemic that requires them is no reason to celebrate.

I remained angry at the CDC and the White House for peddling this rhetoric (including at the White House hosted 4th of July event relying on the “honor system” for vaccination), backed up with the supposed “science” they were following. I didn’t say much at first. But then, on March 3, 2022, I snapped. This was the day the CDC announced “new” COVID Community Levels, a way to actually create and push the “sunshine and rainbows” data, because it only takes into account the number of COVID hospitalizations and ignores other metrics. Their agenda is to create the impression that, if you are vaccinated, there is no reason to take most other mitigation methods unless you are in a “special” risk category. They hid, and continue to hide, the real data in a section called COVID-19 Community Transmission, geared specifically for “healthcare facilities [to] use to determine infection control interventions.” Sure, the data is publicly available, but like any good magician, it’s all about misdirection. Hiding the data like this is a huge slap in the face. “This is how much COVID spread we want you to care about,” the CDC seems to say as they point to Community Levels. They now refuse to acknowledge Community Transmission data, which is how much COVID is actually spreading.

This is when I became furious. We put Biden in office to fix this. He started to. And don’t get me wrong, he did some good. But when the public stopped caring, his administration did too. As I wrote in a previous piece, “I (and many, many other disabled people) have always been skeptical of the CDC from even before the COVID pandemic hit. Then, it hit, and the lack of transparency under two administrations is something very few of us expected.” And I stick by that. We should not have to fight for our lives every single day to prove to the government that we are worthy of living. Yet, here we are. And, for that, I am furious.

I am furious because, while discussing a study about COVID risk factors in an interview with Good Morning America, the CDC Director (Rochelle Walensky) said the deaths of my friends, my disabled comrades, are “encouraging” because “these are people who were unwell to begin with.” Now, I will acknowledge that the first, widely-shared cut of the interview had Walensky’s words taken out of context due to a misleading edit. However, even in the extended version rereleased by ABC, Walensky still dismissed the lives of disabled people who were “unwell to begin with.” As a result of the backlash from these comments, Walensky met with disability rights leaders (a video of which can be found here, or the American Association of People with Disabilities readout here) to apologize and “listen” to the concerns of the community in order to “learn how CDC [sic] can do better.” All I’ve seen as a result of that meeting are empty words from the CDC and the continual perpetuation of harm. So, I’m furious.

I am furious because, as I was working through the edits to this piece, Biden said “the pandemic is over” in a 60 Minutes interview. His administration has let it all go to shit now, and they’re not even hiding it. All the data (like the average of 5,000+ new cases and 500+ deaths per day as of September 19) suggests the pandemic is still ongoing, but they simply don’t care anymore. I repeat: we put Biden in office to fix this. And right now, he is failing. And that is infuriating.

I am furious because of the “sunshine and rainbows if you’re vaccinated” approach. I am furious because of the constant dismissal and denialism of COVID as a real issue. I am furious because of the blatant disregard for human life by multiple administrations. I am furious at and distrustful of federal public health agencies for their complicity in allowing COVID to fester uncontrolled. I am furious, and I have every right to be.

There has got to be a better way to handle this. And I will not stop fighting until the government, and public health in general, gets their shit together and treats COVID like the real, threatening, deadly virus that it is.

Personal Grievances

As the government has continued in its abject policy failure, I have developed deep, personal grievances with extended family members, with my friends, and even with random strangers. I can’t help but feel like they just… don’t care, and that they won’t care if I die because of COVID. And that makes me furious. I am a human being, with as much of a right to life as anyone else. I deserve to be treated as such.

I am furious with every person I see walking maskless; with every single person who has decided wearing a piece of fabric or cloth is too much of a “burden” for them as they enter the store, or as they go to their friend’s birthday party. God, I wish I could go to a birthday party. But that’s a luxury currently only afforded to people who don’t face as much risk as I do. The least someone can do, the absolute bare minimum, is to wear a mask when they go out. But, if I ask for them to put one on, I supposedly infringe on their “personal freedom” to choose to wear a mask or not. Well, guess what? I don’t have the luxury of personal freedom to not wear a mask when I go out, because coming into contact with a maskless person who has COVID and catching it will fucking kill me. Again I repeat: I am a human being, with as much of a right to life as anyone else. Put the damn mask on.

I am furious with every single voluntarily unvaccinated person in the country. I make that distinction purposefully, as some people are medically unable to be vaccinated or don’t have access to the vaccines. I also did not call them anti-vaccine or “anti-vaxxers,” instead using the term “voluntarily unvaccinated.” As Philosophy Tube’s Abigail Thorn explained in her video on vaccines, voluntarily unvaccinated people are not typically concerned about vaccines (and may additionally support other preventative measures), but they are worried about the COVID vaccine in particular. Voluntarily unvaccinated people’s claims about the vaccine not being safe or effective are false and easily disprovable by taking a deep dive into the data. And that’s part of what makes me furious. Even worse than choosing not to protect themselves or others (such as disabled and immunocompromised people like me), they may also be unintentionally spreading misinformation about the COVID vaccines to dissuade others from getting them. Here are the facts: the vaccines are safe, they are effective, and they provide some protection from severe disease and death. There is no logical reason (other than medical exemption or lack of access) to not be vaccinated by this point, and frankly, it is enraging that people still refuse to get vaccinated. Moreover, it is terrifying.

Conclusion

These types of pieces are supposed to have neat, tidy endings. When I started writing this on August 22, I expected to cleanly finish it in one night.

But this sorrow—this grief—is excruciatingly unending. I can’t wrap things up and tie everything together with a pretty little bow because these feelings are ongoing. My fury with the world, with every single person who works in government blatantly enabling our deaths, with every single person who refuses to wear a mask, and with every single person who is willfully unvaccinated, is ongoing. My petrifying fear of dying of COVID is ongoing. The people who should care, don’t. And for all these reasons, I am furious, petrified, and stuck in a perpetual state of grief.

The words here, on this page, at this moment, have to end. But this experience won’t end. Not after I finish writing it, not after you finish reading it. So, I can’t give you closure, nor satisfaction. I can only give solidarity. To those who are hurting, grieving, and as scared as I am: I am with you.

And to those who call for an ending to my rage, to those who call for me to “move on,” I can only say: The ending you call for won’t be satisfactory. It won’t be pretty. And it won’t be.

Acknowledgments and Support Links

Huge thanks to my partner EconEnby for giving me narrative and editorial assistance, and also for being the best partner in the world. And thanks to Dr. Alexis Mobley for helping with a couple general science questions.

If you liked this article, I would appreciate it if you would consider sharing it or sending me a tip (completely voluntary!) with Ko-fi, Venmo, CashApp, or Paypal. All of that information can be found here if you want it. As always, if you need a listener or extra support, feel free to shoot me an email at derek@derekschmitz.com or DM me on Twitter. Thank you so much for reading!

A Disabled Teen’s Short, Early Review of the iOS 16 Medication App

Native medication tracking is a feature I’ve been looking at and hoping for since I switched to iOS a few years ago. Yeah, third-party apps are great, but I’ve always wanted it natively, and now I have it in iOS 16 and I LOVE it. It had a DIFFERENT notification noise and it’s so simple to use.

I do wish there was a way to count your pills automatically (like you enter how many you have to start, then every time you mark one as taken the number goes down and it reminds you when to refill). I’m hopeful that might come later, but for now, it’s a pretty good simple system.