(Not) Working As Someone With A Disability

I was in a discussion on the social media platform Threads about disability discounts, and the assumption that young people are able-bodied and able to work any job because of their youth. Someone in this discussion looked at my bio and assumed I made lots of income, which couldn't be further from the truth. This week, I want to talk openly about why I cannot work.

---

I want to start this post off by stating that I do not qualify for disability assistance, and likely never will. Disability assistance is very hard to obtain in the United States, and can vary in assistance based on working years, disability type, and has strict rules on savings (Social Security, n.d.a; Social Security, n.d.b). I am very lucky to have parental support, so I have help recovering during flare-ups and financial support while I obtain an education. I understand that this experience may not be relatable to every disabled person. Please listen to disabled people who receive disability assistance on the challenges related to disability assistance, including financial limitations, strict burdens of proof for proving disability, high poverty rates, and more.

---

One of the many reasons I am not working right now is that every time I start to think I am ready to look for a part-time job, I find myself in a health crisis. This has included severe pancreatitis, an IBD diagnosis, long covid breathing difficulties, and other additional health conditions on top of hereditary spastic paraplegia and autism. When I get diagnosed with a new health condition, I have to make time for new health appointments that take time away from when I would need to be working. During times when I was working at nonprofit internships, my need to stay home, rest, and use controlled medication prescribed by ER staff resulted in a ruined relationship with the organization I worked for. During times when I was not working, the addition of new medical appointments and difficulty completing my work as needed resulted in my inability to prepare for interviews and maintain a schedule that left me available for work. Many graduate schools assume candidates have years of work experience, which does not take into account my experience with a disability.

Another reason I am not working right now is that I have a lot of medical appointments during the week that add up. I attend physical therapy, and afterwards use other healing modalities recommended by my health team, such as a PEMF mat, red light therapy, and sauna. I visit the chiropractor and also meet with a coach who helps address gut dysfunction in the body. Less regular but still necessary appointments at times include check-ups with my primary care doctor, hyperbaric oxygen chamber, massage, and other modalities rooted in Chinese medicine. I have to do a lot of work to avoid pain and take care of my body, and it adds up. Many places are only open from 9:00 to 5:00, which limits my available time to be in the office.

Lastly, part of why I am not working right now is that I am a graduate student. I do not have the energy to go to school, attend medical appointments, and maintain a full-time job. I don't have the energy for a part-time job averaging 20-30 hours a week either. I struggle with chronic fatigue, which affects my energy levels. My working style allows me to work intensively and quickly, but I then require substantial time to rest. I would not have time to rest if I had to fit everything in. I acknowledge that I have a lot of privilege in having the support of my family to not work a traditional job at this point in my life. However, I want to acknowledge that my disabilities play a significant role in why I am not able to work right now.

I hope that by reading this, a conversation can start about disability and employment. I have struggled with feeling judged for not being "productive" in society, like many people my age. Even though I am disabled, I have many career goals that I work very hard at. I am more than just my working productivity, and I hope to explore career options that meet my accessibility needs while still supporting myself as I get older and start having a career.

---

Thank you for reading about my experience with disability and employment. This is a very vulnerable topic for me, but I think it is important to foster this conversation. If you have any questions or comments, please comment on the blog, reach out at @Anniekrollblog on Instagram or Facebook, or email me at Anniekrollblog@gmail.com. I hope to see you next week!