Disability and Work: What I do

[sasha_feather]

This entry is for the Disability and Work Blog Carnival. Thanks to Liz for hosting it.

In Ursula K. LeGuin's The Dispossessed, in the Pravic language, the word for "work" is the same as the word for "play".

There are a lot of ideas in this book but that one stood out for me because right now I am unemployed, and that has forced me to reevaluate my identity and what it is that I do. It seems to me that in The Dispossessed, work/play is what occupies a person's time, and what one does with the people in one's community, because community is very important to the culture of Anarres.

So, what do I do?

Like many chronically ill people, the first thing on my mind a lot of days is management of my disease. It's a complex and demanding job in itself. Some of it you might expect: I make doctor's appointments and try to keep them, I manage my medications and supplements, I try to keep some sense of my symptoms and how they are changing. I try to exercise moderately, get enough to eat and drink, avoid foods that I think will make my symptoms worse. I try to get enough rest, think about pacing, try not to overextend. All of this can get complicated because my symptoms keep changing, but it's not really an unexpected part of living with illness.

What has been more unexpected for me is the huge emotional toll of chronic pain and illness. Particularly this year, I've done a lot of emotional work around this issue, which has taken a lot of time and energy. And I've learned that emotional work is hard work, undervalued work.

Those things are very hard to talk about in casual conversation, like when someone asks, "What do you do?" So here are the things I talk about more often:

*I volunteer for WisCon, the World's leading feminist science fiction convention. I read feminist SF/F novels, graphic novels, and other books. I am a member of two book clubs (although I don't always read the books.)

*I am a disability and anti-oppression activist. I've been learning more about this mostly through reading the internet-- people's journals and blogs. I also listen and talk to people face-to-face. I usually follow (at least somewhat) whatever the latest internet imbroglio is, and sometimes I will go back and read older ones ("Feminist history needs to be written down!"). This also takes a lot of time and is something that can be painful for people: although I seem to be in a place where I can do it now, easily, this hasn't always been so, and it's not something everyone has the time or emotional resources or interest to do. Lately I am thinking about it a lot in terms of community.

*I am a moderator of access_fandom, a community for talking about access and disability issues within fandom. I intermittently work on the Wiki associated with this, Access Fandom Wiki, which is a place people can go to figure out how to make events such as conventions more accessible. So far there are two pages up, Attitudes and Signs; those were written by jesse_the_k.

Right now in the comm three of us are doing in linkspam on Feminsting and disabling language, check it out.

*I'm involved in Media Fandom: I read and write fanfic, I beta read fic, I make icons, and I consume other fanworks such as podfic, fanvids, art, and meta. I must recommend right now dira's post on fanfic and the suppression of women's writing. Fandom is mostly (but not all) women, and fannish work is devalued work.

I enjoy the community aspect of fandom particularly, and so I try to support the community by going to fan gatherings, by leaving feedback, by being welcoming towards people, by being respectful. Fandom is a particularly supportive community, at least for me, because individual members have worked to make it so. (You see what I did there?)

---

I have personally benefitted from the feminist idea of work being a socially constructed idea, and "women's work" such as housework, childcare, and care of the elderly and ill being often unpaid or underpaid and devalued by society. The reason women are paid less than men is because women's work is undervalued. Women often provide emotional support for others, they build friendships, they build communities, they build homes. All of this takes time and effort.

The categories of women and disabled people intersect hugely. The work of disabled people is also devalued, and disabled people face huge barriers such as pain, exhaustion, mobility and cognitive impairments, communication differences, discrimination in the work place and the wider world, and a lack of basic access to buildings, services, and transportation.

These oppressions also intersect with race, class, sexual orientation and identity, age, and probably other factors that I am unaware of or forgetting.

So I think that the work I am doing right is pretty important, interesting, and exciting. It's just hard to sum up with a job title. :)

Comments

[badgerbag]

brilliant post! wow! how well you describe it all.

[sasha_feather]

Thank you so much!! And thanks for your great posts on work since they helped me think it through.

P.S. this is crossposted at LJ and there are some comments there too.

Excellent points!

[(Anonymous)]

This is a great post, and so much of it echoes my own experiences: When you have no pat answer for "What do you do," are you really doing anything? But I do a lot of things actually, I just don't get paid to do them. I actually contribute in a lot of ways that are de/undervalued by society, and it's been so helpful to me to learn more about how those values get assigned, helping me to recognize my contributions - and the contributions of others - that have been sidelined and to realize their importance.

Great post!

NTE
www.neverthateasy.blogspot.com

Re: Excellent points!

[sasha_feather]

Thank you so much! It's been amazingly helpful for me too, to learn through feminism and disability studies about how society values things. It's helped me take control back of my life. Thanks for reading and commenting.

Late but still true

[jesse_the_k]

I'm finally getting to the "Work & Disability Blog Carnival" tabs ...

This post is outstanding!

Just today in the shower I was talking over "new wheelchair shopping" with an aquaintance, and mentioned the Second Shift for the Sick. That's all I had to say, she ran with it (huh!) immediately.

She's managed to find a workable (hah!) situation where she & her well sister share an apartment and apt manager duties for a 55+ apt building.

I would love to share jobs/tasks with people. One more plus to all-volunteer enterprises is the ease with which we can pick & choose how much to contribute.

Re: Late but still true

[sasha_feather]

Agreed re volunteering-- we can often choose who we want to work with, and what jobs interest us most, and leave those jobs behind we feel we're done with them. Perfect! I've always liked volunteering and sharing work, and collaborating in general.

I'm curious as to how you were talking something over in the shower. Do you have a phone in there? We you showering with somebody, at the gym maybe?

Re: Late but still true

[jesse_the_k]

Yeah, I've got one of those magic waterproof cell phones — Capt Nemo was the beta tester. /silly

My reliably social time of the week is after I swim three times a week. I love my pool because the average user age is around 60; there's almost no tight spandex and lots of us have pain & function issues. And being me, I've always been evangelizing for the wonders of assistive tech, which has led to many interesting conversations.

(I do hear disturbingly high negative self-talk around the scale. Pretty much the same amount as when I worked out at the undergraduate facility, the "oh! noes" came from very thin women; at my pool now, the same reaction comes from women 40 years older, and 30 pounds heavier. It's not about what we weigh or how we look, it's about never meeting an unmeetable standard.)

Re: Late but still true

[sasha_feather]

Negative self-talk is disturbing! I agree. And when one is around it, it's like a virus, it's catching. Luckily I think positive self-talk can be catching too.

[mystickeeper.livejournal.com]

I have so much love for this post.

[sasha-feather.livejournal.com]

YAY.

[sophy.livejournal.com]

And I've learned that emotional work is hard work, undervalued work.

Amen to that!

I dread the question of "what do you do?" because I know people mean "where do you work?" when they ask it. So I usually respond that I'm on disability. If they are inquisitive enough, the next question is usually "what do you all day?" and I actually like that question better. It does often come with a sense of judgment attached ("if you're not out there working and being a productive member of society, what in the world could you possibly be doing all day?"). I usually treat it with a bit of sense of humor at first - "well, I watch a LOT of television" and then if they seem like they actually want to know more, I get into the good days/bad days aspect of it and talk about all of the neat things I get to do on good days.

But none of that really qualifies what I DO. Because, yes, I do a lot of emotional work on myself. And taking care of my health is a full-time job in and of itself. And managing the parts of my life made more difficult by being chronically ill is a big job. And talking openly about my life as someone with chronic illness and trying to spread awareness and advocate for others is a big job. But it's hard to say all of that in answer to "what do you do?"

Maybe I should change how I answer that question. "Well, I spend most of my time and energy on staying as healthy as I possibly can" or "My job is to manage my chronic health issues" or "As a disability activist, my primary focus is on advocating for myself, and it takes a lot of energy just to do that!" heh.

Anyway. I like your answers a lot.

Great post.

[sasha-feather.livejournal.com]

Thanks! Yeah the "what do you do" question can be really hard, and I like your last answer particularly.

Great icon too.

[sophy.livejournal.com]

Thanks, I acquired it from someone in the fibromyalgia community. I like it a lot, too.

[brdgt.livejournal.com]

This makes me think of the literature on invalidism - it has been romanticized and criticized a lot, but I've also read some things in the history of medicine about how invalidism was an empowering idea - that you were treating it like your job to take care of yourself (and maybe get better). Maybe we need to take back the word?

[sasha-feather.livejournal.com]

Well that would be interesting to talk about. My initial reaction to the word "invalid" is maybe to leave that one behind, since it makes me think "not valid", and everyone is valid and valuable. But it seems like some of the struggles of disabled people to redefine their lives are certainly struggles that have happened over and over again throughout history, probably each person in her or his own life-- and yet it can feel like you are doing it all alone, no one has ever done this before! Which is interesting.

[brdgt.livejournal.com]

It makes me think about the changing disease patterns and how chronic disease is now more common than infectious (although, to me, slowly wasting away from TB in the nineteenth century is chronic, but that's another story). Combined with the fact that you usually can't *see* a chronic disease and that many Americans believe we have eradicated the most important diseases, I can see how it lends it's self to invalidating the respect once accorded "invalids."