Recommended Reading

Please do not be on my side

The American Academy of Pain Medicine wants better treatment of chronic pain. So do I.

I hate that fucking joke so much.

World, please stop saying, “Achieving [something you think is awesome but it’s actually pathetic] is like winning a gold medal at the Special Olympics!”

A Special Olympics gold medal is not a dummy prize. It is awarded to world-class* athletes who have managed to beat dozens of other world-class athletes to achieve a distinction to which very few people can aspire. Special Olympics gold medallists think their medals are awesome because they actually are awesome.

March 15: Sue Boyce (b: 1951):

Happy birthday to Australian senator from Queensland, Sue Boyce, who has made disability rights issues a priority of her legislative work. She’s currently serving on the committee to consider Australian immigration laws on the subject of disability.

Should the Social Model of Disability permit Autism treatment?

Sometimes, it is hard to differentiate between direct and indirect consequences of a condition, between impairments and disabilities. IP uses autism as an example of a condition that doesn’t create intrinsic suffering, and I commented that I disagreed there, although this issue is hotly debated within the autistic community. I, for one, suffer from chronic overload, which does not always have a known trigger. It could be that, in an ideal world with low stimulation, I would not suffer from this symptom, but I often cannot tell exactly why I suffer from overload.

Please don’t say you’re sorry

Becoming committed to surviving cancer was not an easy feat. Dealing with other people’s reaction to my cancer was one of the things that made it an especially difficult process. When the people around you are treating you like you’re already on death’s door, it can be hard to see past the fatalism. If I had a dime for every person that said “I’m so sorry” or “Poor baby!” when they found out I had cancer, I’d be richer than Bill Gates.

Time to die? Plus Assembly, Bunnies, PJs and a lovely coffin:

People often have two responses when I talk about my disease and the pain, one is to ignore, like I never talked. The idea that it hey it is just Elizabeth, ‘EFM’ after all, and her condition is weird and painful (and thus somehow pain is okay..for ME). This is set up socially in terminal disease culture where immediately the HEALTHY person is given counseling, has a stack of books of dealing with THEIR pain. There aren’t really any books on dealing with pain of terminal levels, or the path one has to take in order to live while dying. The attitude is, ‘They will be dead so….’ – what is unspoken is, ‘so YOUR pain, you healthy people, at their loss needs to be addressed as does the horror of those late nights of groans and agony we will never know’. For those who HAVE the groans and agony, the idea that only the person NOT in pain is having ‘issues’ is a rather hurtful one emotionally.

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