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FWD/Forward: FWD (feminists with disabilities) for a way forward: Page 133

Transparency and Feedback

It is important to all of the contributors here at FWD that readers and commenters be able to provide feedback on the site . It’s also important to us that you can see the processes we use and know how we respond to that feedback and address it on the site. So even though we’re quite a new site, we’ve already received some valuable feedback which has caused us to make some immediate changes and wanted to share it with you in the interest of transparency.

When we announced the site going live this afternoon, we received some immediate feedback on the site’s blogroll and how it excluded an important perspective – that of women over 50. (I’m not identifying the person who provided this feedback publicly because I don’t know if they’d be comfortable with that – if they’d like to be identified, just let me know and I can swap it.) During the planning for this site, we had identified age as an important axis of diversity and made it our goal to include a range of perspectives on age and aging in our blogroll and our posts. We put together the blogroll fairly quickly and intended to continue to revise and supplement it as the site progressed.

HOWEVER – neither of those things were at all evident from the site or the blogroll, so the only way people could have known is with psychic powers. That is a failure of inclusion on our part, and we apologize for that. Many of us have experienced implicit exclusion from mainstream feminism sites on the basis of our disabilities, and sincerely regret causing that same feeling of exclusion to women over 50, bloggers exploring the issues of ageism, and anyone else who was offended or felt excluded. That was our bad, and it was bad.

Since then, we’ve been working on finding relevant sites that we can add to the blogroll and are planning to think and write more about the issues of age and how they intersect with both feminism and disability. Some of the site’s contributors are 40ish, but none are over 50 and I’m not aware that any of us focus specifically on issues of age, so that’s obviously an important perspective for us to seek out and make affirmative efforts to include on the site – not just saying “if you want to see it, write a guest post.” (Although of course if you want to write a guest post we’d love to have you!!)

This is not an appropriate time for me to talk about how ageism interacts with feminism and disability, because it’s obviously not an issue I have any business speaking on. But we will continue to be doing and research and reading and working to connect with older feminist disability bloggers to feature and include on the site.

This is what we hope the site can do – receive feedback, respond to it, and incorporate it into the site moving forward. While we certainly hope we won’t make too very many mistakes, it is inevitable that we will make some. Our committment to you is that when you raise them with us (and emailing is a great way to do it – either the author of a specific post or administrator [@] disabledfeminists [.] com for site-wide issues like this one), this is what we hope to do with feedback. If you take the time to identify an issue and highlight it for us, we owe you the respect of serious consideration of your feedback and a good faith effort to respond to it.

Awareness

I happened to be standing in line at Big National Chain Bank the other day when all sorts of things started going awry for the tellers. First, one had her computer crash. Then, the other had what seemed to be some sort of problem with a cashier’s check which involved a lot of furtive muttering and consultations with the other tellers. The third teller had a customer who appeared to be depositing approximately eight million checks into four million different accounts.

So, I realized I was going to be there awhile. The people in the line behind me (including the man who first tried to cut in front of me because he “didn’t see me,” because I guess being fat really does make you invisible), started grumbling and grousing and complaining. Which always seems odd to me. I mean, sure, no one wants to stand in line at the bank, really, but I fail to see how moaning about it is really going to help.

And, while I was standing there, I had a sudden flash of awareness. I thought, “man, this would really be uncomfortable and unpleasant for someone with a disability like chronic fatigue syndrome.”

See, the thing is, the bank is totally accessible in terms of the letter of the law. The doors are wide and ramped, there’s a counter low enough for customers in wheelchairs to use. But I started looking around as I was standing in line, and I realized that the bank actually has a lot of accessibility problems. Like no chairs in or around the area for the line for people with disabilities to use while they are waiting, which means that someone with a condition like fibromyalgia or chronic fatigue might walk in the door, see the long line, realize that they will have to stand in that line for a prolonged period of time, and either grit their teeth and suffer because they need to get their business done that day, or leave, making the effort of the trip a total waste of time and energy.

Like a floor which is kind of rough, and while probably navigable with a wheelchair, might catch a walker, a cane, or an unwary foot. As if the flooring isn’t bad enough, there are random rugs which also represent a tripping hazard. And that low counter with space for a wheelchair? There are two chairs crammed right in front of it, which means that a wheelchair user can’t just roll right on up to it and get down to business.

And what about the narrow doors into the carrels the bank uses for private business? I’m not positive a wheelchair would fit through one of those, and once inside, it would be difficult to maneuver. And, of course, there are chairs wedged every which way from sideways in all of those carrels, and the chairs would need to be moved to accommodate a wheelchair user, someone with a walker, a scooter user, someone on a ventilator, someone who needs supplementary oxygen.

It was an important flash of insight.I’ve always been interested in accessibility, but it was only recently that I started making the leap into examining spaces to assess them for accessibility from an actual usability perspective, not just a legal one. And, from there, to think beyond “wheelchair user” and to start thinking about people with other disabilities. Disabilities I would not have thought about if people weren’t writing about them and sharing their experiences with me.

And, you know, as a society, we are doing a pretty crappy job when it comes to making even basic accommodations for people with disabilities. Like, say, making sure that sidewalks don’t randomly end. Or making doors wide enough. Or keeping bathrooms on the ground floor so that people can access them. Or making counters low enough for wheelchair users, older adults with severely bent spines who cannot straighten up, or people with dwarfism. Putting up grab rails where they are supposed to be. We can’t even comply with the law when it comes to accommodation, and the law is woefully shortsighted.

Accommodation is not just about complying with the law. It’s something that needs to be thought about from a lot of different angles when designing and laying out spaces. Clearly, this thinking is not going on, and this means that people with disabilities are forced to ask for accommodation. Sometimes, they are forced to ask a business to just comply with the law, and they aren’t even requesting that people think outside of their own bodies for a moment and consider ways in which they could make the lives of others easier. People with disabilities should not have to be asking business owners to do this. Business owners and members of society should be able to figure out how to make spaces accessible; they should be able to evaluate a space and ask, not only “is this space legally compliant,” but “how would this space be to use, as a person with disabilities?”

We need, in short, more awareness.

Originally posted at this ain’t livin’.

Telegram to TABs, on Spoon Theory

Message to TABs (Temporarily ABled[1] folk):

Spoon Theory?

It’s not yours.

It doesn’t describe the sleepy feeling you get at the end of a long day, nor the feeling you get when your kid wakes up for the third time in a night, nor the feeling you get because you went for a bike ride yesterday or are pulling shiftwork right now or feel like a weekend nap or stayed up late last night reading a book or whatever else is going on in your life.

It’s a word for people with disabilities, an oppressed group, to describe our lived experience, which is not the same as yours. Our oppressors taking our language is not ok.

Many of us know what not having a chronic illness feels like, including not-having-a-chronic-illness while parenting or exercising or pulling shiftwork, and it is nothing like this. Ordinary done-a-bit-much tiredness has nothing in common with the experience of people with genuinely limited spoons (and typically a whole other bunch of symptoms), and who are going to feel the same every single day for the foreseeable future. No.Thing.

Your co-opting of this term is NOT OK with me.

STOP

~~~
[1] I know that “temporarily able-bodied” is a problematic term, though in this post I am speaking mostly specifically of chronic illnesses like CFS, fibromyalgia, lupus, and so on. Do people have the same problem with Temporarily-ABled? I’m willing to change the language.

Cross-posted to Hoyden About Town

How Do We Understand This Experience?

This the story of the first time I really understood the degree to which intersectionality was key to understanding and addressing mental health issues.

When I was first diagnosed and the subsequent years when we all tried to figure out what was really wrong with me and what medications would allow me to function without too many problems, I had a lot of problems with anxiety. Or hypomania, or mixed state, or whatever people want to call it. But back then I had absolute faith in the power of the DSM-IV, and the medical professionals for which my parents were paying big bucks, to analyze my illness, assign it to a category, and know exactly the protocol to treat me. So back then, I thought of the episodes I was experiencing as panic attacks.

They felt like sheer terror, like my heart was pounding so hard I could feel it through my whole body, like my hands were a blur of shaking, like my muscles were pulled tight beyond their limit. I couldn’t make myself breathe right, taking a short gasp each time my heart thudded. But it was even worse inside my head, where a giant storm raged and kept me from thinking even a full thought because I was so overwhelmed with the thunder of certain and unavoidable bad! harm! doom! destruction! And after ten or fifteen minutes, the storm seemed to pass, and I could take deeper breaths, but felt battered and sore. They were awful and I hated them and resented them for appearing out of nowhere. I was ashamed that I could be so affected by whatever it was that set one off, if that could even be identified. I felt like I had no power to affect them.

Years later, when I no longer carried a bottle of tranquilizers with me just in case I had an attack, I went to a week long training up in the mountains with people from all across California. We were all young professionals with lots of degrees and post-grad degrees from US institutions. One night, I sat with some of the other women at the edge of the forest, in the kind of pitch dark you don’t get very often in California, with all our lights. It was super quiet, with no cars around for miles, and you could hear rustling of animals in the trees. Frankly, it was a little scary, so we of course decided to tell ghost stories.

One of the women told us a story about a road near her house in rural California. She said there was a section of the road where a bad car accident had taken place in the past that when you drove through, you could feel it was haunted. She told us how people from the surrounding area would drive by it to try to see the ghosts. I’m a complete skeptic about anything remotely paranormal or extraterrestrial or psychic, so I wasn’t making much of the story, and neither were some of the other women. But the woman explained that while the people who came to the spot were silly and would never get anything out of it and were wasting their time, she said she was certain that there were ghosts there.

She told us that her grandmother was from one of the indigenous tribes of Mexico and had been considered a holy woman because she could be possessed by ghosts. Her grandmother would be possessed for short episodes, around ten to fifteen minutes, and during the possession she would breathe quickly and her muscles would shake and she felt overcome by fear and evil. And the woman had inherited some of this ability through her grandmother’s bloodline and had similar episodes sometimes. She described the possession in detail and it was if she was reading my psychiatrist’s notes on my experience of a panic attack. Exactly the same – it felt like we had experienced the same thing.

I still remember the feeling I got then, when I realized that what I called a panic attack and thought of as a mental health problem to be treated with medication, she experienced as a ghostly possession and thought of as a valuable ability and a tie to her grandmother. And that neither of those definitions or perspectives or frameworks was any more valid. It was like one of the optical illusions where suddenly what I’d been seeing as a vase was also two faces in profile. That there were two realities that had been co-existing this whole time and I’d just now noticed one of them was there.

I was, and am, still overwhelmed with the implications of that realization. How would a person with her framework interact with a mental health system with the DSM categories and staggering range of medications? What would happen if she described an episode of possession to a physician or psychiatrist? And what would the difference be if I could think of it as a valuable ability instead of a debilitating problem with my brain? Would I even want or get any treatment if that were my perspective? What if my culture valued me for this? How does she handle the prevalent skepticism to ghosts and such? So many things to consider.

And then there’s the remaining question: how many other realities are there? How many other perspectives are on this experience we’ve had? How else can I think about what I experience?

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