I’ve been trying to build a life for myself, despite the Ehlers-Danlos. The main thing I have been focusing on is getting myself to the point where I can financially support myself. This has been harder than it might seem. My health conditions aren’t just troubling me now and they didn’t start doing so when I injured my hip in 2002. 

Ehlers-Danlos is genetic; my health has troubled me all of my life. It grew more complicated upon onset of menstruation at age 11 and by age 13 my health was so poor that I failed to attend a single full week of school throughout the entirety of 8th grade. In 9th grade, I missed more than half of the days in the first semester, so my school district provided me with homeschooling during the second semester. When 10th grade stared, I attempted to attend classes in person but on a half-day schedule; I still missed more than half of the first semester. After being home schooled by the school district for the second half of 10th grade, I turned 16, which meant I was legally allowed to drop out of school, so I did. 

I earned my GED and started trying to work (not in that order). I wasn’t able to work, not even 20 hours per week, so by age 18 I started attempting college. Emphasis on attempt. I started college in 1999. By 2016 I had earned only 49 credits due to the amount of times I had to drop out of a semester. 

I can’t maintain my health long enough to get through a semester anymore. Every year since 2008 I’ve experienced at least one major surgery, hospitalization, or serious illness. In the past couple of years, I’ve had several of each every year. I’ve given up getting even my Associate’s Degree, let alone the amount of schooling it takes these days to eek out a living.

So, I’m disabled, I have no formal education, I live far below the poverty line, and I’m fucked. But I’m still trying to not be fucked. I’m still trying to figure out a way to support myself.

From The Personal to The Political: A Thought Process Regarding Worsening Disability And Activism

  1. A Medical Appointment (CN: Mentions of anatomy, medical conditions of sexual and pelvic organs, and medical procedures. No descriptions or details.)
  2. TMI: Sex (CN: Sex, anatomy, gender, psychology. Mentions of sexual trauma without descriptions or details.)
  3. Causation (CN: Mentions of anatomy, medical conditions of sexual organs, medical procedures, and medical trauma/neglect. No descriptions or details.)
    1. 2002: Pelvic pain origins
    2. 2011: Diagnosis and treatment of original injury
    3. 2013: Continued treatment
    4. 2018: Hysterectomy
    5. 2019: Diagnoses related to pelvic pain
  4. Feelings
  5. Developmental Years & Privilege
  6. Trying
    1. The Disability and Sexuality Access Network
    2. We Need Some Fucking Help, Desperately
  7. Asking for Help is Really Damn Complicated
    1. Labor and money are both forms of capital and we’re short on both
    2. Disposability politics
    3. Oppression olympics and privilege
    4. “Capability”
    5. Access as a privilege
    6. Capability as ability and incapability as disability
    7. The movement can make us capable; it can also render us incapable
  8. We Are Nowhere Without The Movement to Support Us