Pain is very costly. For those of us who have chronic illnesses or disabilities, there’s the added aspect of knowing that however well you may be doing at this moment, there will be another moment in the future where you will be brought low.
So I had a particularly strong reaction when I read this post from Hannah Paterson (NUS Disabled Students’ Officer) about International Day of Persons with Disabilities. There’s a lot to like about what she says and I am very proud of the National Union of Students’ for actively campaigning on issues affecting students with disabilities, but I can’t bring myself to agree with her exhortation that we ‘celebrate being disabled’ or ‘celebrate disability’. Thank you, but no. Crohn’s Disease is terrible, as are the things it has done to my life. I decline the invitation to celebrate agonising pain. I shan’t be celebrating the anal sphincter spasms that prevent me from working and are so humiliating that I can’t even explain to my supervisor what it is that’s been impeding my productivity. I won’t celebrate the times I’ve held very still and only taken slow, shallow breaths to avoid moving my abdominal muscles any more than necessary. I refuse to celebrate the time I went to Accident and Emergency screaming in pain only to be ignored for ‘drug-seeking behaviour’ then dismissed as ‘a bad case of flu’.
None of which is to say that I haven’t found things to celebrate since my diagnosis. I prefer, however, to celebrate diversity, accessibility, opportunity, and inclusion. I celebrate people who happen to have disabilities rather than the disabilities themselves. Can’t we use an opportunity like International Day of Persons with Disabilities to share competing narratives in which students and researchers with disabilities and chronic illnesses are lifted up as role models even if they did unthinkable things like take time out or admit when they were in pain? Silent and stoic sufferers who overcome adversity by never acknowledging it are not helpful exemplars.
It's a great blog with writing by people who are in the trenches; I hope that it will be helpful to the person who occasioned this recent post at the Philosophy Smoker.