Derek Schmitz's Blog, page 5

I Am Professional (a repost of my recent LinkedIn campaign)

I recently participated in the #IAmProfessional Linkedin campaign and wanted to share my contribution here.

“Hey LinkedIn universe, #IAmProfessional!

I am 17. I am queer. I am non-binary. I am disabled, both mentally and physically. I wear makeup. I attend meetings in t-shirts with galaxy backgrounds. I work from bed sometimes. But still, I am professional.

I work within The Council of State Governments as a member of a group developing and improving state transition policies. I run the Twitter account and facilitate outreach at Autoimmune Community Institute. I develop and execute fundraising efforts for Neighborhood Access. And, I run my personal brand including extensive advocacy and management of a published catalog. Oh, and I’m a student in both high school and college simultaneously.

So, yeah, #IAmProfessional.”

Email Disclaimers

Hey, y’all! I wanted to publicize the full texts of my disability and confidentiality email disclaimers, free for modification, in case you might find them helpful!

Confidentiality disclaimer (in email signature): IMPORTANT: The contents of this message and any attachments are confidential. They are intended for the named recipient(s) only. If you have received this email by mistake, please notify the sender immediately and do not disclose the contents to anyone or make copies thereof.

Disability disclaimer (in email signature): Disability disclaimer: I am disabled and chronically ill, and require lenience in scheduling and response time expectations. Please provide a 2-hour notice for any phone call or videoconference meeting, and allow 96 hours for email responses. Thank you.

“Crash response” auto-reply (vacation responder): Hello! Thank you for reaching out. This is an automated reply notifying you that I am currently working in a limited capacity due to a flare of my medical conditions. I will respond to your message as I am able. Thank you for your understanding and cooperation and I look forward to working with you soon!

A Crash Course in “Crash Prep”

Hey y’all, Derek here with a late-night post. Today, I’ll be talking about CFS and RA flares and crashes, and how I manage my crashes. I’ve also linked some products I use that help me exist while I’m flaring (Affiliate disclaimer: I am a member of Amazon Associates and may receive commissions on linked products). I’m writing this today as I’m recovering from a crash because a) it’s fresh on my mind and b) I hope it helps people.

Let’s get into basic definitions. I define a flare and a crash differently. Flares, for me, are longer-term and more painful than baseline. Sometimes, I can flare without crashing. But, I can never crash without flaring. A crash is a serious, rapid loss of energy and a significant pain increase. So, basically, a crash is a rapid onset flare.

Now, I can sometimes tell when flares or crashes are about to happen. If I can tell, I typically get the realization within 12 hours. If it’s an impending CFS flare or crash, my exhaustion levels will begin to skyrocket and I get a sinus infection, and at that point, I go “what did I do too much of” and track down the root cause (overworking on school because of ADHD hyperfocus is the most common). With RA crashes or flares, I get a lot more symptoms. The biggest one is probably an increase in aches and fatigue, as well as an increase in pain in typically managed areas (i.e hips). If I start to get achy, I know shit is about to hit the fan. Being able to anticipate them is a privilege because it allows me to do “crash prep”, and sometimes, I don’t have that opportunity and am rendered SOL (shit outta luck).

When I feel a flare coming, I instantly do two things: tell my mom and start crash prep. Crash prep, for me, involves moving essentials within arms reach of the bed. I have a queen-size bed, so it’s easy for me to work or migrate things to bed that I would otherwise do at my desk. I start by clearing my nightstand, which becomes my crash management center. I place my emergency and regular meds closest within reach, beside a beverage (typically a Mountain Dew because I need sugar and caffeine) and some cashews/salty food (because POTS). Then, my glasses, pens, and notepad go beside my lamp on the side closest to me. I sleep shirtless, so if I have non-reschedulable meetings the next day, I put a folded t-shirt on the other side of my lamp. Also on the other side of my lamp is my deodorant, a comb, and hair detangler spray for some basic self-care. On the floor by my bed, I unfold my “bed desk” (a nifty little laptop stand/table I got for Christmas) and put my laptop and mouse, as well as my heat pad on it.

If I’m anticipating a very hard crash, I turn on my out-of-office email “crash response”. I have a disability disclaimer in my email signature anyway (along the lines of “I am disabled and chronically ill, so please be lenient when expecting fast responses”), but when I’m crashing, I like to give people a bit more of an “I’m medically unable to be at my desk right now, I’ll get back to you as soon as I can” type response. I’ve put out the full texts of all my email disclaimers and the auto-reply here if you’d like to use them. I’ll also let my IEP case manager, teachers, college disability support specialist, professors, bosses, and colleagues know that I may miss deadlines or be doing a reduced amount of work until I’m back to baseline. Then, I sleep.

And then wake up and say “ow, fuck, I can’t move.” At this point, I tell my mom I was right, then tell my partner it’s gonna be a rough day, and take my meds. Since I did all the prep beforehand, I can manage most everything independently and be left alone (I tend to prefer being left alone when I’m crashing or flaring). But, there is still the inevitability I forgot something (today, it was ice), so I’m grateful I’ve got my mom around to lend a hand. If I’m up to it, I pull my desk up and my day basically looks like a light work/school day from bed with my focus being on emails. If not, I just mindlessly scroll Twitter and watch YouTube waiting on the pain to go back to baseline or my energy to return.

I acknowledge having access to a lot of the things I mentioned is a privilege. Not everyone will have $60 for a bed desk. Not everyone has access to meds that actually work for them. Not everyone has amazing bosses, colleagues, and support systems who care enough to pay attention when you’re sicker than normal and help in any way they can. But, I do, so I use them all. The biggest tips I can give you is to tell you to utilize your resources, and ultimately, it is okay to rest.

If you liked this article or if it helped you create your crash plan (I hope it did), I would appreciate it if you would consider sharing the article or sending me a tip (completely voluntary!) with Ko-fi, Venmo, 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!

New Executive Professional Summary (Jan 2022)

I wrote a new Linkedin bio and I’m super proud of it, so I figured I’d share:

Derek Schmitz (they/them) is a 17-year-old, disabled, queer, and non-binary advocate, author, and student. They have an interest in public policy and legislative work.

They are currently working with the Autoimmune Community Institute, a nonprofit dedicated to improving health equity in those with autoimmune conditions. They are also working within the Council of State Government’s Center for Advancing Policy on Employment for Youth (CAPE-Youth), a Department of Labor initiative which seeks to improve employment outcomes for disabled youth and young adults. Derek also works with Neighborhood Access LLC, a New Hampshire-based, all-disabled, nonprofit organization focused on making community-facing organizations accessible.

Aside from their affiliations, Derek does personal advocacy and community outreach through their large Twitter community (@derekischmitz) and website (derekschmitz.com). Most of their original work includes highlighting inadequacies of programs like Social Security and Medicaid/Medicare. They also share their experiences being queer and non-binary and issues with queer safety in some areas.

Derek has written and published two young-adult fiction novels, one being an action/suspense thriller, and the other being a queer and disabled romance. They have also written and published a brief research paper on health literacy, and are working to publish an analysis of physician-assisted suicide practices.

In addition to their work and authorship, Derek is still a student. They are a junior at Oxford High School with a 2.9 GPA. They are a dual-enrollment student at Jacksonville State University, where they have earned a 4.0 GPA.

Derek is driven, organized, approachable, and kind. They would make a valuable addition to any team or organization.

Reflections on the CAPE-Youth Working Group December Conference

Hey y’all, it’s Derek again! I am back after an eventful three days in California to discuss my experiences and some of the policies I was newly introduced to! 

Day 1: A Rocky Start with a Great Ending

Day 1 got off to a rocky start with an early flight out of the Atlanta airport. If you know anything about flying while disabled, I’m sure you can guess why. My bag tags wouldn’t print, for starters, so we had to deal with that, then waiting on a wheelchair took about twenty minutes. We got through that, then the security line (yes, even in the special assistance line) took another thirty minutes. But, that was fine, we got through it. Got on the airplane and got situated, then hit a couple of rough patches of turbulence. And, after five hours, we landed in California. I met my contacts in the airport, then took a nice car to the hotel and checked in. 

I rested in my room for a bit, then I and a majority of the other youth members went to an Italian place for dinner. I really began finding “my people” in the youth group at this first dinner and connected closely with them. They were the other two queer/neurodivergent people, as well as a paralegal from Oklahoma with invisible disabilities like mine. We stayed out for probably a bit too long, but we had a great time! Jetlag surprisingly didn’t hit me too hard at all this trip, which was awesome!

Day 2: The Work Begins

On Day 2, we had a full day. We began at 8am with breakfast after we picked up our policy packets (identification, slide deck, agenda, other supplemental information), and of course, I sat next to the autistic queer kid I grew close to the night before. There was chocolate-covered french toast, which was amazing. I spent the hour learning more about the youth sitting at my table and what their ambitions were and discovered we all want to go into law or public policy. I was also introduced to representatives of the U.S. Department of Labor, the Maryland Department of Disabilities, and the Delaware Division of the Visually Impaired who sat at the tables around me. 

We reviewed the guideposts for success, state policies/program scans, school/WBL/youth leadership, family engagement, and system coordination/professional development. These reviews were all very interesting and gave us slight opportunities to speak to our experiences going through these systems. My table took every opportunity presented to ask questions or share our insight, and a few policymakers in the room seemed to be very interested in what we had to say. Looking through these policies and program scans let me and the other youth participants see what our and other states are doing to address the aforementioned guideposts for success. 

Then, we grabbed our box lunches and loaded the bus for our off-site visits. The first off site visit was to an employment center for disabled people. This visit was… not great to say the least. It reeked of ableism from the moment I walked in, and the environment was not conducive to successful employment. It felt very disconnected from the community, and they couldn’t answer basic follow-up questions regarding their approaches to substance abuse and mental health (which were their main two talking points). I was glad to be out of there and to the next facility the moment I saw it. It was a complete and total opposite of the other center. It was a small charter school called Health Services High and Middle College that focuses on being student-led and building transition to college/workforce into all aspects of their curriculum. The atmosphere was so open and it was just awesome. I said it there and I’ll say it again here, that every state needs to create a school following their curriculum, and I’m working to make that happen.

We went back to the hotel and were released to our own devices. As soon as we got off the bus, myself and one of my friends/close colleagues chased down a policy maker from Massachusetts who discussed disability as a qualifier. We caught him right as he was about to step on the escalator and diverted him to the elevator where we discussed the research he was doing and the importance of diversity in the workplace. He offered to buy us appetizers at the diner in the hotel, but we declined as we had already made dinner plans for pizza with another participant. So, we went up to our room to freshen up and change, then walked the streets of San Diego (with supervision, of course) for 2 miles trying to find pizza. We found some, it was great, then we grabbed ice cream on our way back to the hotel. We rested, then woke up for day 3!

Day 3 and beyond: The Work Continues

Day 3 was scheduled as a half-day, and probably gave me the most opportunity for networking and hands-on experience out of all three days. We started at breakfast again, where I talked further to DOL and Maryland about my goals and ambitions for the future. We started programming by addressing COVID responses, as well as telehealth services. 

Then, we split off into breakout groups with policy makers to develop “positive profiles” which basically consisted of identifying our strengths and hobbies. I led my group and we were very hands-on and collaborative, discussing any and everything to reflect both on the task at hand, and the conference as a whole. After time was called, we went back out to the big room, where another one of the participants (the paralegal from OK) finally said the quiet part out loud: we felt like the content wasn’t geared to us, we didn’t have enough opportunity for speaking or direct work with policy makers because of the way things were setup, and the vibe of the conference was very performative. I voiced my agreement to all of that, then that part was over, so we returned to our original tables while prep began for the trauma-informed care segment. 

A facilitator came to another one of the participants (who was in my inner circle) and asked them if they’d like to help facilitate the trauma informed care discussion. They suggested I do it with them, and I agreed (obviously). We spent 15 minute piggybacking off each other’s points and ideas around systems integration and quality of care, then learned about Maryland’s WIOA initiative that allows self-attestation as a qualifier for services. I slipped out into the hall to find the restroom, and the program director approached me to thank me for my input and remind me that this was a 3-conference series with continuing collaboration, which I appreciated, as it seemed they really heard what I was trying to say.

We discussed career and technical education, then wrapped for the conference. I had lunch with a close friend/fellow participant, then they had to go catch a car for their flight back home. I split off and went to a meeting I arranged with a different org I’m working with, and we discussed the 2022 strategy. After that, I got back to the hotel and went to the computer lobby to work on follow-up emails. A policy maker from Oregon approached me and discussed their initiative for youth involvement during their in-services and offered me a seat at that table. I said yes, and I can’t wait for that and our last 2 conferences next year. Then, I had dinner with a couple other participants who were still around and caught my shuttle to the airport afterwards. 

Since I’ve been back, the majority of my work time has been spent on Linkedin connecting with the policymakers and other participants, as well as sending follow-up emails to keep myself on radars. I’ve also begun working to bring some of the policies I was exposed to back to Alabama!

Conclusion/Final Thoughts

If I haven’t bored you to death with the bit of event summary, I’m glad you’re still here. I want to now go into how young advocates like myself can prepare for adulthood and get involved at advocacy. 

The biggest tip I can recommend is find your resources. Every state has an office of disability rehabilitation (often called something along the lines of (State) Department of Rehabilitation Services or (State) Department of Disabilities) that has proven critical for me as I explore employment/college options and as I need resources to ensure my community engagement (for example, Alabama offers adaptive drivers training that lets me learn to drive safely and accommodates the needs I have for car modification). These services aren’t talked about often, but they are so important to the community.

In becoming a “better” advocate, I say be yourself 100%. Sugarcoating your needs or brushing them off is the easy thing to do, but in a society so primarily nondisabled, we must stick up for the things we need to ensure access. I say this often, but I’ll say it again: society creates barriers for disabled people because, generally, disabled people are seen as less than. We must fight that thinking and the associated inadequacies to ensure our access. I know it’s so, so hard and so defeating at times. Trust me, I’ve been put through the wringer about as far as I can be, and I know some of you have too. But, I am here for and will continue to work with anyone who needs me, just reach out to me on Twitter (@derekischmitz) or shoot me an email to derek@derekschmitz.com. 

We will do this, ensure our access and accommodation, together and we will not look back. Thank you for reading. I’ve enjoyed sharing my experiences with you.      

Being Offered a Seat at the Table as a Young Disability Advocate

My name is Derek. I’m a 17-year-old non-binary, queer disabled advocate. I’ve had cerebral palsy (what I like to refer to as floppy muscles) since I was born, so I’ve always been disabled. I’ve also recently been diagnosed with spondyloarthritis and a couple of other autoimmune conditions (commonly referred to as my angry joints). These conditions are hard to manage as a teenager sometimes because they often leave me in constant pain and chronically exhausted, but I do my best to make all my appointments, take my meds on time (my ADHD makes that tricky), and still manage school and other priorities, as well as just being a teenager and growing up. 

I like to say I’ve been an advocate all my life since I was born disabled. I often perplex doctors with my knowledge of my medical history or research regarding illnesses I have or suspect I have. I often feel I leave them questioning “Who is this kid? And why are they talking while their mom just sits there?” after appointments. I’ve always been an educator, sharing bits and pieces of my experiences as a disabled kid (and now a teenager) with classmates and anybody who will listen (even going as far as to prepare PowerPoints and videos explaining my illnesses to answer common questions in third grade). I started my Twitter account in January 2018 and began sharing bits of my life, advocating for others, and lifting others there as a way to build community when it felt like nobody “got it”. I did just that for a while, and then I got publicly outed as gay in February 2020. I flipped that around and began sprinkling in LGBTQ advocacy to my existing advocacy. Since then, I’ve amassed over 1,500 followers and am amazed at the community I’ve built and the people I’ve met. 

I was recently selected for a seat on The Council of State Governments Center for Advancing Policy on Employment for Youth (CAPE-Youth) 10-member working group of disabled youth. The group’s purpose is to give input on and assist in the creation of state transition policies while working directly with high-level state and federal government officials.

Everything for the CAPE opportunity started back in September when my vocational caseworker sent me an email with the subject line “Youth Leadership Opportunity”. I expressed to her from the very beginning that I was an advocate and looking for any ways to get further involved in developing policy or advocating on larger levels. That subject line definitely caught my eye. Inside the email was information about CAPE, an application, and a due date: September 17, the day after my birthday. I eagerly thanked her for putting it on my radar and began the application. I wrote 900 words about who I was and what my future goals are (to open a pro bono/sliding scale law firm specializing in ADA non-compliance and SSI denial claims), got a very nice recommendation letter from someone I look up to and attached my resume. Then, I sent it back for submission. One month later, I got a congratulatory email from the program director.

To be honest, from the start, I was a bit skeptical about the whole thing. It seemed too good and too right up my alley to be true and a thing I had been accepted into. But, I looked past that and graciously confirmed my participation because there’s no way I would turn down the opportunity to craft legislation that would affect me and millions of other disabled youth at such a young age. I’m the youngest of the group, with the rest being either current undergraduate or freshly graduated students. It’s such an amazing opportunity for me personally because as I mentioned earlier, I’m very intrigued with policy development. Being able to develop policies to be used by multiple states as a 17-year old is amazing.

I’m mainly going for the experience of working with lawmakers. In the future, I intend to be working with judges, members of state and federal legislatures, and other government officials very regularly to assist in reform and revitalization of SSI and Medicaid (side note: Alabama, where I’m from, has yet to expand Medicaid). Having the basics of how to address them and how to present myself down early is going to be invaluable when I need it. Additionally, having more personal connections with lawmakers is critical in the work I’m doing and plan to do, so starting these connections early and informally is advantageous. I’m also going to the December conference to show that young people (yes, even teenagers) have ideas and plans that can be valuable to conversations. That’s why having a seat is important to me. I see it as a recognition of “yes, they’re young, but they also have ideas that can help,” and that is something that is recognized way less than it should be. 

We’re teenagers, so we will inevitably make bad decisions or say the wrong things. However, that doesn’t delegitimize our desire to help make the world a better place. We should be recognized as valuable members of society who can make valid points, and sometimes, even change the world. That’s why I’m going to this summit; to be recognized in my personal advocacy efforts, and pave the way for those who come after me to also have their voices heard. 

Thank you for reading. I’m so excited to come back after the conference and tell you all about it!

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Two New Positions!

Hey y’all, Derek here! I’m overjoyed to announce I have accepted positions within two different organizations in the past few days!

Firstly, I applied and was selected for a position within the Council of State Governments Center for Advancing Policy on Employment for Youth Working Group! I will be working with ten other young disabled people, plus three within CSG (for facilitation) to help state and federal lawmakers craft transition policies to be better centered around the true needs of disabled people in moving from teenage years to adulthood (the workforce or college). I’ll be going to conferences around the US (and virtually) to work hands-on with the other members and legislators to directly influence change and share the issues I face as a young disabled person! This is huge for me as a young advocate, as it will give me the opportunity to practice and learn how to better advocate for myself, advocate as part of a team, and gain connections within state legislatures around the US! I start with them today (October 30) and I can’t wait to meet the rest of the team and get started! To learn more and support my journey with them, you can visit my Twitter @derekischmitz where I’ll be posting about my experience, and you can follow CAPE @CSG_CAPEYouth on Twitter as well!

Secondly, I applied for and was accepted for a marketing internship position within the Autoimmune Community Institute! I first heard their founder Dr. April Moreno facilitate an event for the Autoimmune Association, and was instantly hooked into her proactive approach to conditions. I looked into ACI right after the conference and applied for their internship. 11 days later, I met with Dr. April one-on-one and was offered a position to assist them in expanding their community through Twitter and their new podcast! I love working with smaller organizations with big goals, as you can really see your work benefit the organization and help work to meet those goals. I can’t wait to meet the rest of the team and hit the ground running to help expand their communities when I officially start on November 12! To learn more and support my journey with them, you can visit my Twitter @derekischmitz where I’ll be boosting their work and sharing my experience, and you can follow ACI @ACICommunity on Twitter, Linkedin, Facebook, and Instagram as well to support their amazing organization!

I’m really excited to begin my work with these organizations and can’t wait to share more with y’all! Thanks for reading!

More Blog Posts Coming Soon

Hey y’all, Derek here. It’s been about 2 months since my last blog post and I really miss writing out long-form stuff. School and life and medical crap have gotten in the way recently.

But, when I get my keyboard, I’m gonna hopefully get back into the swing of things. I have some concepts that I’m going to flesh out throughout the next couple of weeks and then schedule them to go up on some consistent schedule.

I’m hoping to get 4 pieces out per month (1/week, every Saturday) and if I get these 4 concepts I have written in time, October will have a post a week. But that’s subject to change and very tentative due to disabilities, chronic illness, school, life, etcetera etcetera. So just bear with me as I figure stuff out, please.

In the meantime, I’m still very active on Twitter (@derekischmitz) where I do short-form advocacy and thought-sharing. I have a few threads I’m gonna compile soon (mainly a response to an NYT Opinion), but they’ll be here as soon as I have an extra few minutes to put them together.

Thanks for the support, and I can’t wait to be back with longer-form pieces!

My Journey to Disability Pride

Hey y’all! I really want to get back into the swing of long-form personal blog posts, so this’ll be one of my first attempts at that in a while. July is Disability Pride Month. I know my piece is a bit late (it’s July 31 as I’m putting finishing touches on it and posting it), but it was emotion heavy and tricky to write continuously due to medical trauma I’ve experienced. I kind of want this piece to allow me to look back on my journey of accepting myself as disabled and connect or offer advice to newly disabled people. This post will mention ableism (both internalized and externalized); have descriptions of institutional abuse; discuss surgery and post-op complications/mention blood; and discuss mental health, so I wanted to go ahead and mention that at the top here. This will be a little jumpy, just depending on the order in which I remember things and how I feel they all fit, so I apologize for that in advance if it bothers you. All that said, I think I’m ready to jump into this now.

So, let’s start by going back to as early as I can remember. My earliest memory is literally me in OT learning how to write my name with my therapist, Debby. I remember the paper I was writing with had huge dotted lines and my only objective was to write my first name in between the lines. Then, as I got better, we progressed onto my last name, and then we progressed into other fine motor skills I struggled with. At this point, I don’t think I was aware that I was disabled, just that I had a lot to do and was away from other kids my age a lot. My parents did a really good job of not “treating me as disabled”, meaning that yes, I did get the help I needed, but they didn’t want me to think that getting help made me any different than my peers. I was okay with it back then, as I think younger me wouldn’t have been able to understand anything other than “you’re different a little bit”, but I’m glad that as I’ve gotten older than age 3, they’ve let me explore my disabilities and identify with and feel them however I want to.

Gonna time jump a little here to he first time I truly realized I was disabled. I had a horrendous kindergarten experience. I needed help (and still do) with “simple” things, such as opening cartons, tying shoes, and fastening buttons (on pants/button-ups etc). We put all of this in a 504 plan, as that’s what my school system (at the time), said was the only way I could get accommodations (spoiler: they lied). Everything I needed was in that 504, and was supposed to be respected, it wasn’t. I have a feeling that my teacher didn’t even read it. That school was an inaccessible hell, and I vividly remember comparing it to a prison on multiple occasions. We fought and fought and fought, up to the board, until we finally decided to move out of the district, as my brother was on the way. So, we moved from that inaccessible hell to the amazing system I’m in now, and I’ve never had a problem with getting my accommodations met.

For as long as I can remember, I have always been an educator/advocate for myself. I believe it was 3rd grade when I started making PowerPoints and asking my teachers to allow me a few minutes on the first day to explain my disability (at the time, it was only one, with a spinoff) to my peers. Most of them agreed, and I was given time to explain everything and take a few questions (most notable: “what’s that thing on your leg?”). I knew that educating my peers from the get-go, as a whole, would lead to me having to answer less of the hundreds of repetitive questions I would get throughout the year. But, I still had questions to answer, and was open for turning bullying or belittling questions into educational moments year-round.

I’m going to jump ahead a bit (again) to the end of 2018. I had just gone through my first foot surgery consult. I was excited, hot on my heels, because I was promised that this surgery was going to be the surgery. It would fix my flatfeet which created a bunch of cerebral palsy issues. Surgery was on Valentines Day 2019, and everything went “great”. I went in at 5, as ordered after being NPO all night. I believe it was about 10am when I was wheeled to surgery, but I don’t think it started until about noon. I remember going under while talking about what college I wanted to go to. I woke up in recovery with no apparent problems other than a little pain. I spent the next month(ish) recovering at home with my foot in a cast and being completely non-weightbearing, while doing school from there too. I distinctly remember a sharp pain in the arch of my foot at the bottom. Come to find out, that was the pressure sore. Cast removal day came on March 26, and I got the first glimpse of the sore. It didn’t look very bad initially, but it continued to worsen as I began my rehab. I had to advocate like hell to be taken seriously, and finally my amazing physical therapist (shouts to you, Casey) called a wound care nurse who confirmed that it was a pressure sore and gave me all sorts of stuff to start treating it at home. We did that and it eventually went away, as it was approaching level 4 status. I confronted my surgeon about it and he finally took responsibility.

Later that year, as I was still recovering, we found that there was more work to be done. I had a screw in my heel that caused serious pain, plus there were a few positioning changes that I still wanted to make. I brought it up to my surgical team, and we scheduled a revision surgery for fall break (mid-October) 2019. We went through with it, and it went exceptionally well, leaving my foot in probably the best shape it’s ever been in.

Anyway, off of surgery. Let’s pop over to my public advocacy and Twitter journey. I started a Twitter account in late 2018 and was followed by my mom and a couple other friends and classmates. It was never a huge thing and I never intended to become the advocate I am today. I then got submerged into the disability community on Twitter and shared my stories. I met other disabled people and was there to support those who needed it. I started really blowing up after I was outed on Feb 2, 2020. I put out that statement and reclaimed my outing and met so many amazing people. It was from that point forward that I decided I wanted to become a public disability and LGBTQ advocate. I did just that, boosting disabled people and being more open within my communities. That was truly the first moment I felt pride in calling myself disabled.

Fast forward to the middle of the pandemic. I was growing my base and working well on Twitter, but the horrific pain in my back and hips was just getting worse. I had been having it for three years, but my rehabilitation medicine doctor was very dismissive, something that happens a lot when you’re disabled and in pain. It kept getting blamed on my cerebral palsy. I distinctly remember saying “no, this is different” multiple times and then it was chalked up to be nerve pain. I remember doing research on rheumatology, cause I got a random hunch that said “look at this whole other specialty that you’ve never worked with before” so I did. I looked into it and found juvenile idiopathic arthritis. I begged my rehab med doctor to just write the damn referral, and he wouldn’t. So, at my yearly physical, I brought everything up to my peds team, and while they couldn’t see anything wrong, they wrote the referral anyway. Huge thanks to Dr. C for that. I got into and went to the Department of Allergy and Rheumatology at the children’s hospital where the rest of my appointments were within 2 months, which honestly surprised me. My rheumatologist Dr. W greeted me with a warm smile, a heavy German accent, and jokes. While we were going through my symptoms, he said that I had a “weird case” but that he “wasn’t saying [I] was making it up” and that was incredibly reassuring and affirming. At the end of our appointment, he ordered 7 tubes of blood and sent me for an X-ray. My x-ray was clear, but my bloodwork returned with a positive HLA-B27 marker, which indicated that I was at higher risk for rheumatic disease development. I felt relieved that we had something to work off of, and Dr. W ordered an MRI. It was scheduled for election day 2020. So, we went and got it done.

About a week later, Dr. W called my mom and gave me the official diagnosis: juvenile idiopathic arthritis, specifically spondyloarthropathy and sacroiliitis. We came up with a treatment plan including sulfasalazine and methotrexate. I began following my treatments diligently, relieved that I finally had answers and something that was working. Well, at least something I thought was working. I had a horrific reaction to methotrexate (the first in the step therapy up to Humira) and ended up having the worst weekend of my life. But after that weekend, we stopped it completely and put in s new prior authorization for Humira. By the grace of God (or whatever spirit you believe in, if any), it was approved shortly after we sent it in, and I had my first dose of Humira on December 18, 2020. I know it’s weird that I just remember dates like that, but that was the first day I went without feeling as though my hip was falling apart in 3 years. And I felt proud that I stood up for myself and grateful that I finally found a team that listened to me.

All of that to say, I am proud to be disabled. I had a long journey to self acceptance and working through serious bouts of internalized ableism and panic attacks along the way. I’m not perfect, sometimes I still get bummed by the things being disabled prevents me from doing, whether by inaccessible spaces or limitations of my own body. But, I am proud of my journey. I’m proud that I found such an amazing community and that I finally have people around me that let me express myself and be who I truly am inside. I am proud of how hard I’ve had to fight to be heard, and I am proud of everyone still fighting to be heard. I’m proud of all the disabled people around the world who self diagnose, who force doctors to listen to them. I’m proud of all the amazing advocates I have met along my journey, like Tinu, Charis, and Corin, and all the work they do. I’m proud of the friends I have made through my advocacy, some of whom are my now my best friends and parts of my chosen family.

Most importantly, I am proud of myself and I take pride in my disabled identity. I hope you are too. If you’re struggling with a diagnosis or anything disability-related and you need a listening ear, I’m here for you. Shoot me an email and I promise to be as much of a listening ear or advice giver as I can for you.

Thank you all for reading. This was a deeply personal article for me to write, but it felt good because it gave me the opportunity to reclaim my experiences and share my pride in being disabled with you all. If you liked this article, I would appreciate if you would consider sharing the article or sending me a tip (completely voluntary!) with Ko-fi, Venmo, or Paypal. All of that information can be found here if you want it. Once again, thank you for reading, and please don’t hesitate to reach out if you need to talk.