chronicillnessproblems:

clairetheelectrick:

What abled people don’t understand is that self-advocacy is so, SO EXHAUSTING. It pushes us to our limits, it forces us to expend energy (that we often don’t have) to demand basic human rights, rights that abled bodies and minds get without even knowing it. 

What so utterly frustrates me is that I barely make it through every day, and I am not “productive” in the ways society has determined I should be to be successful or a “contributing” member of society. Further pushing me to self-advocate when I really shouldn’t need to exacerbates my symptoms and makes me feel sub-human.

What always gets me is when college Disability Offices have advocates who are there LITERALLY TO ADVOCATE FOR YOU and the very first thing they tell you is “you’re an adult now and you need to learn to advocate for yourself!” Aside from the fact that they are getting paid to be an advocate, it’s literally their job, it’s ableist and bullshit and needs to stop. 

People can’t always advocate for themselves, and they shouldn’t have to. That’s why we hire patient advocates for example in hospitals, because when you’re sick you’re barely managing to sit up and eat and talk, let alone manage your own condition and fight those around you to do the same. 

Plus the fact that people don’t listen to disabled people- especially young women with chronic pain. I’ve had to drag disability advocates to meetings with my professors just to get them to agree that I wasn’t faking sick days to get out of class, and that was only productive for the professors who bothered to show up, one of my professors ignored the assistant dean’s invite to the meeting and never dealt with the issue in any way other than yelling at me when I did show up to class. 

If someone tells you you have to advocate for yourself don’t let them make you feel bad for not being able to, ever. 

On a phone call arranging to extend my medical leave this week, I expressed some concern about whether everything would get approved without issue. The advisor told me that she was sure it would because I’d been so good about advocating for myself and keeping everyone in the loop.

Yeah, I’m good at paperwork, but I could have finished cleaning the data for my PhD by now if I wasn’t spending so much damn time “advocating” myself through your endless bureaucracy. And it shouldn’t take a million phone calls 4 phone calls and 2 meetings (it FELT like a million, ok?) with three people whose job it is to advocate for me to get my medical leave arranged.