Recently I had a class in which I looked stupid. This is normal for most people but as an introvert who hung out in the back of the class in class sizes of 300 people I usually didn’t have to talk, being put in the spotlight was never something I was used to. I am a graduate student now and my average class size is 10.
My class centered around interviewing the author of a social justice work book we read for the course, and I was very excited. I loved the book, and as someone who was a communicator for a church and trying to empower women and people in general in the chronically ill community, I had a lot of questions for her.
I am not articulate, so I wrote my questions down in advance. It had been a while since I finished reading the book and I wrote my questions that day so this was my likely faux pas. My questions to her centered around racial and gender identities and how they related to chronic illness and disabilities. I explained I was working on trying to make a positive difference with a somewhat girly chronic illness blog about personal identity, self advocacy, and empowerment. The author retorted that tutorials on how to look pretty for doctors appointments and individual activism was not how we overcome systematic injustice.
I have a few thoughts here. First, it is correct that individual activism is not how the chronically ill and disabled overcome systematic injustice. We must all share our stories honestly and openly with bravery. This is how we can seek each other out and join forces. However, I do not write tutorials on how to look pretty for doctors appointments. This blog does not exist to make a chronically ill or disabled woman conform to societies standards, it is to help her remember and have her feminine identity, if she identifies as feminine, be accessible within her new body. It exists to let those with real physical pain and limitations know they can still express themselves, just with some changes, and still accept themselves whether they have a buzz cut or want to learn how to maintain their hair that they love (not that society loves).
A diagnosis or disability is a traumatic life event that can make a person feel as if it is their only identity. I did not feel I had the time during class to explain that many chronically ill and disabled women wish to maintain who they feel they truly are after their diagnoses.
During the class I mentioned that it felt strange to me that I had to identify, or claim my identity as, a chronically ill person. I explained that I knew I had to use this language in order to find others like me to join forces and educate, and I believed it was the English language that forced me to use these labels. I also feel it is the medical system being controlled by pharmaceutical and insurance companies that pushes me into labeling talk and a lack of holistic care. I have noticed that other countries with other languages and cultures have different ways of seeing and talking about people of different abilities, genders, illnesses, and sexuality.
I know from a sociological standpoint an identity is not the personal identity from a more psychological standpoint I work from on this blog. Here I try to provide avenues to deal with the trauma of an illness. Even if society were different, the physical ramifications of illness and the emotions that come with them are things that no one outside of the group understands, even advocates. This is not something often talked about: trauma, self esteem, feeling worthy of accessible spaces and healthcare.
This large part is crucial to social change because in order to have change the community must be united. Within the chronically ill, mentally ill, and disabled communities, people are prejudiced against one another within their own groups and there is a lack of unity. People finding worth and confidence in themselves may help them find the same for their fellows. Their paths and struggles may hopefully produce the understanding needed to lift each other up.
This is just my theory. Feel free to disagree.