Life Choices

Apr 26 2017 Published by under Uncategorized

A while back I got into a spat with someone on Twitter. They were advocating for persons with disabilities. I have always tried to do so myself, and in fact, my research can fall in, has fallen in, is considered to be part of, rehabilitative medicine. I have gone to rehab medicine conferences, with my ears open, to learn what I can. Rehab was not my training, but I have worked hard to include it and have done more than lip service in terms of my NIH work. Working with people with disabilities is part of a Venn diagram that includes my work.

One of the things I know is that not all disabilities are immediately visible. And within the community of people who self-identify as having a disability, or a physical challenge, or a mental challenge, there is disagreement and contention about what constitutes disability or challenge. The person on Twitter demanded (and it sure felt like a demand to me) to know  if I had a disability and if so what it was. I responded that again, not all are visible, and that it was beside the point. She immediately blocked me and that was the end of the discussion.

Yes, that's twitter. That's our current view of tolerance. But mostly, I think she did not like the other part of my message, and what we were discussing (using 'discussing' in the broadest and most inclusive sense).

The source of our disagreement was "fixing from the inside" vs. "fixing from the outside". I maintained that "from the outside" would be less effective than from the inside, while acknowledging that everyone has, or ought to have, the right to make the choice to be inside or outside.

The point of this post is not about rights and respect for people with disabilities. The point of this post is being inside or outside and choosing where to be (but of course, its nice to vent about some idiot on twitter). At the time, I thought that being in or out was the point. I thought that advocating for an underrepresented group in academia, or in any nexus, is a function of having respect within that nexus, of having the currency, and credentials and chops to get people to listen to what you have to say. For example, patients can advocate for changes in the health care system, because they have some respect by the group to whom they are advocating. (we can argue about the extent of that respect, by health care providers for the people in their care, but that is another post).

My point, which I did not make effectively at the time, was that people who leave academia, in particular young people who drop out of a degree program, have little respect from, let alone credibility with, those who remain. Just the words "drop out" are loaded with negative connotations. I am not saying this is right, I am just saying it is. What I have seen is an attitude along the lines of "if you can't make it/succeed here, you are not worthy of our attention". Someone who leaves academia is not going to have a lot of success, in my experience, trying to change how academia deals with its problems and bad attitudes. This may be right or wrong, but it's there.

That the unknown Twitter spat-partner wanted to leave academia, in frustration, because, she said, of her disabilities, may be a good thing for her. That is not for me to judge. And I am strong supporter of people choosing. Not because academia doesn't want her, but because, to my sense, her commitment was to changing the world for people like her. I want for people who want to do science, who want to be researchers, to have the option to do so. But if something (professionally, we're not talking about family, etc)  in one's life becomes more important than doing science or research, then it may be time to move on. And move on without prejudice. If academia had been more welcoming to her, if her program had been more accommodating to her issues, would she have stayed? I don't know. I don't know that she knew. But that's getting back into the difference between something being right, or being the way it is.

This is not a statement about what academia *should* be like. It is not a statement about how academia fails (though it did, and continues to do so). This is a statement about living in the world in which we live, and choosing to do what we do.

So why write about this now? Because I have been thinking about why people stay or go from academia. Because I have been thinking about what is *my* responsibility, as a senior person, to keeping people in academia, those who want to stay and are feeling shuffled or herded or pushed out. But sometimes it feels like the voices and messages and information sources are overwhelming. This incident is the just the framework that got me started thinking.

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