Well Done! Terri Wilder remarks at 1/12/17 meeting of the CFS Advisory Committee

[SB_1108]

And the phrase "able-bodied privilege" - NOOOOO! I hate convoluted terms like that. It’s an awkward and unsuccessful attempt to draw an analogy between white privilege and those with good health. It just doesn’t work, and is a poor use of the English language to boot.

I quite agree. Even though she's fighting our corner, when I got to "start by checking your able-bodied privilege and how you participate in microagression" I decided I just couldn't like it.

I don't understand the issue with the language "able-bodied privilege" or "microaggression" - I've heard the phrases referenced in sociological theories related to oppression (outside of racial relations). Disability prejudice, discrimination and oppression are real issues that need to be acknowledged in our community. A friend of mine recently said "privilege is not a concept delimited by race." In recent years, there has been an increasing amount of literature focusing on microaggressions, or subtle forms of discrimination, toward people of color; women; people with disabilities; and lesbian, gay, bisexual and transgender (LGBT) people. For example:
https://www.researchgate.net/public..._to_microaggressions_Transgender_perspectives
AND
https://www.researchgate.net/public...ns_With_Mental_Illnesses_An_Exploratory_Study

I don't think she was seeking things to criticize. You can tell from her bio online that she has devoted her personal and professional career to HIV/AIDS activism and education. She specifically said in her previous CFSAC public comment:

I can tell you that it didn’t take me very long to figure out that we are repeating history with ME. I have told multiple people that I’m having déjà vu. http://occupyme.net/2016/05/18/cfsac-comments-terri-wilder/

I see able-bodied privilege on a daily basis. "Why don't you work" or "why don't you go to the gym" or "why didn't you call or stop by" all make me want to say... Why don't you check your able-body privilege and realize I'm struggling over here! Not every individual is ABLE to be gainfully employed, ABLE to work-out or ABLE to have an active social life. Is there a different term that is more preferred than able-bodied? Should we instead say "non-disabled" - maybe? But the entire point is to highlight that able-bodied privilege exist, even at our own ME conference or at this meeting that we should all be able to participate in as a community.

Terri's Public Comment:

The most ill are probably people you will never meet because they can not come to a meeting like CFSAC or participate on advocacy calls or attend a ME conference in Florida.

I wanted to attend CFSAC in person but I couldn't because I've been too sick. I wanted to provide public comments, yet when it was time to submit them, I was not well enough to write anything. I wanted to call in to listen but again, I was in the bed, resting the entire two days. I would love to watch a recording, yet the only thing I've been able to see is the presentation recorded by Solve/Carol Head and this public comment published on the Occupy ME Blog! That is an example of those that should be looking out for us not checking their able-bodied privilege to give the community a means of being involved in very important meetings about our health. Why were we unable to watch this conference via video live-stream? Was it recorded so I can watch it later? If so, when? Why do I only get this opportunity to participate in this meeting twice a year? Meeting only twice a year really limits our abilities as people with ME to be involved!

As @jspotila noted above, the Denver Principles state that people with AIDS:

3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.http://www.actupny.org/documents/Denver.html

I thought Terri's public comments differed from the typical testimony provided during CFSAC because she offered a new, fresh perspective that IMO needed to be shared.

 

[TiredSam]

I don't understand the issue with the language "able-bodied privilege" or "microaggression" - I've heard the phrases referenced in sociological theories related to oppression (outside of racial relations).

The first time I heard the phrase "check your privileges" I disliked it immediately, without really knowing why. One reason is probably because as soon as you imply that your counterpart is someone who is unaware of their privileges or is aggressive (micro or otherwise) you are moving towards an ad hominem argument, which will put your counterpart's back up and make them more likely to be defensive and stop listening to whatever point you were originally trying to make.

Not being steeped in sociological theories, to my untrained ear "check your privileges" and "micro-aggression" just sound like sanctemonious bids for the moral high ground, being quick to take offence as a way of distracting from the main argument, the excesses of college campuses etc. It may not be meant that way, but I think that's the way it may come over to a lay listener, so I'd rather not phrase my arguments in those terms. I just don't like the language, sorry.

 

[Mary]

@jspotila - you make a lot of good points. I just thoroughly dislike the word "microaggression" when used as discussed here - I know it's been used in academia and activist circles, I am aware it's been used in contexts other than race, and I still don't like it as used here (and I'm not crazy about some of the other uses I've seen either). It comes from the word aggression, which implies a negative intent, and again I'm concerned about alienating the population at large and those who make the decisions which affect our lives, when we badly need their support.

I'm not saying keep our mouths shut on these issues. Not at all. I completely agree that there is an urgent need to educate the uneducated about our needs for access (beyond ramps), etc., and to call out when things go wrong, as you have done. I have no dispute at all with that and am very grateful for all you and Terri have done in that regard. Again, it's the terminology which is being used which I have a problem with.

But I do thank you for all your work - I know it's not insignificant -

 

[Mary]

@SB_1108 - I've explained my objections to the words "microaggression" and "able-bodied privilege" in my responses to Jenny Spotila, and @TiredSam's feelings echo mine. I think those words can create an adversarial ("us vs. them") relationship where none need exist - or, in other words, you can catch more flies with honey than vinegar. I was a legal secretary for a very long time, and I saw how in family law the courts much preferred that the parties settle matters, particularly with regard to children, in mediation. Adversarial relationships become hostile and the parties are much less likely to do things in the best interests of each other or the children. I think we need to do what gets the best results. And if I, while acting in good faith, do something which unintentionally harms another and I am accused of being an aggressor, however micro, I'm not going to take kindly to it. But if instead they explain why what I did really wasn't the best thing to do and asked me to change, I'd be more than happy to do so. that's all.

And if someone intentionally acts to harm persons with ME/CFS, that's a whole different ballgame and does require affirmative action on our part to rectify things.

 

[Riley]

The first time I heard the phrase "check your privileges" I disliked it immediately, without really knowing why. One reason is probably because as soon as you imply that your counterpart is someone who is unaware of their privileges or is aggressive (micro or otherwise) you are moving towards an ad hominem argument, which will put your counterpart's back up and make them more likely to be defensive and stop listening to whatever point you were originally trying to make.

Not being steeped in sociological theories, to my untrained ear "check your privileges" and "micro-aggression" just sound like sanctemonious bids for the moral high ground, being quick to take offence as a way of distracting from the main argument, the excesses of college campuses etc. It may not be meant that way, but I think that's the way it may come over to a lay listener, so I'd rather not phrase my arguments in those terms. I just don't like the language, sorry.

I just learned of her comments from seeing them on an ME Action post yesterday. Unfortunately I had to cringe when I read it because of this language.

I think @TiredSam wrote what I was thinking but unable to explain in words.

The only reason I am even aware of this type of language is because I spend so much time on the internet. I think this type of language is going to elicit groans and eye rolls or outright confusion (as most people have never even heard the term "micro-aggression") from lay listeners.