I find this discussion very interesting, for a few reasons. I would like to share some of what I understand Terri to be saying.
First, regarding "person with ME" versus "patient," I had never heard of making that distinction before I met Terri. That insistence on saying person with ME comes from her background in ACT UP. In 1983, a group of HIV/AIDS activists wrote a document now referred to as the Denver Principles, and began the empowerment of people everywhere. There is a
nice summary blog post about it, and here is the actual quote from the Denver Principles:
We condemn attempts to label us as 'victims,' which implies defeat, and we are only occasionally 'patients,' which implies passivity, helplessness, and dependence upon the care of others. We are 'people with AIDS.'
Second, regarding microaggressions. That term is not used only in conjunction with racism. Microaggressions have been studied in the contexts of misogyny, gender issues, and disability as well. It encompasses "the casual degradation of any socially marginalized group, such as the poor and the disabled."
Microaggressions are everyday exchanges that are usually below the level of awareness of members of the dominant culture (which will change based on the context). People perpetrating microaggressions often mean no offense and have no idea they could be causing harm. The general point is that the dominant or majority culture constantly reinforces that culture by sending signals that the minority culture is "other."
So for example, I consulted a doctor once for a health issue unrelated to my ME diagnosis. At our first and only appointment, the doctor reviewed the list of my diagnoses and when he got to chronic fatigue syndrome, he looked at me and said, "You don't look tired." He probably meant no harm, and was maybe even trying to be funny. But the comment was incredibly upsetting to me. He was behaving from the mainstream view of my disease, reinforcing the erroneous stereotype that we are just tired. But by doing so, he dismissed my experience and knowledge. That was a microaggression.
Another example is travel to meetings related to ME. Both I and other people serving on committees have had to constantly request extra travel days for recovery, and sometimes are told there is no budget for it. The CDC working group on the new diagnostic info on the website held a one day face to face meeting, but they made no allowance or accommodations for remote participation. As a result, at least one caregiver was not able to participate despite having put in all the time for meetings leading up to the face to face. That failure to plan and budget for remote participation is rooted in ignorance on the part of healthy people at CDC, with no attempt made to examine what accommodations might be needed. That unintentional (I assume) reinforcement of the usual expectations one might have of people traveling for a meeting could be experienced as denigrating by the caregiver or person with ME.
I don't agree with every single point that Terri made, but I think her use of a term like microaggression or ableism is worth examining. I have found that a lot of times, people just don't
think. I include myself in that. It is far easier to do things the way they have always been done, and sometimes that results in hurting or offending people who don't fit that mold very well.
