This is a pilot survey to discuss and gain feedback about question design for the AO3 Demographics Survey 2023 project. You will be shown th
Hello again!
We're back with another pilot survey for the AO3 Demographics Survey 2023 - an independent research project about the demographics and behaviours of AO3 users, which is planning to launch at the end of this year or early next year. (Please note that we are in no way officially endorsed by or affiliated with AO3!)
The purpose of our pilot surveys is to seek feedback about which questions should be included, the best phrasing of questions, and similar design concerns. After analysing the results of the initial pilot surveys, we now have a final draft of the complete survey. These questions are intended to identify any remaining issues in the final draft, and any guidance which needs to be placed in the FAQs or similar in order to help the final survey run smoothly.
If you are willing to give feedback, we estimate the survey will take about 15 minutes. No data collected as part of this survey will be included in the final project; it is for survey design purposes only.
We regret that due to the use of images in this survey to display how questions will look, it may not be accessible to those using screenreaders. The final survey will not have this issue.
This pilot survey will run for about a week, or until we have received 800 responses, whichever happens first. Signal boosts are appreciated. Thank you!
Hi friends - it's been a bit, here at least. Remember when we only had to manage one or two social media accounts to stay in contact with people because they hadn't dispersed to a dozen different places? That was nice.
If you're not aware, 2023 has not been kind to me, and I am presently living with my (very kind, very generous) grandmother whilst finalising my divorce. My health has been rough, managing my audhd has been rough, it's a rough year. But! I have taken a huge amount of joy and pride and gratitude in being able to continue my PhD and not having to take (another) intermission.
As such, it's been a teensy bit hard to maintain posting about how my research is going. But as I've recently come to find that asynchronous sharing is easier for me and more accessible for people than trying to maintain Twitch streaming, I want to try and post here a little more, even if it's very infrequent.
So, to give you a relatively swift update on where we are:
I had supervision last month and we did a lot of edit planning and nailing down of the issues with my chapter draft, which was just about complete before that meeting. A large amount of the problem was that I had separated my discussion about the survey results and my arguments for the chapter. I made my next target sorting this out, editing things together, finishing the chapter off and if possible doing this for the video games chapter too (spoiler alert: I will not be managing to do both).
One of the main issues that my supervisor highlighted was that in that draft, I had no fanfiction. In my fanfiction chapter. We'd discussed the ethical steps I wanted to take with citing fanfiction, such as not using archive-locked fanfiction, getting author consent to cite, and making sure I'm not citing a fandom with a history of abuse (to protect myself).
This is what I've spent this week fixing. I have found a fanfic which is, and I cannot stress this enough, utterly perfect as an example. It's in a fandom with canonical mental illness, the story is top 50 for kudos and top 10 for kudos-with-mental-illness-tags in its fandom, and it is complete at 225k words. The story is not only brilliantly written, but it has a meta-story within it that essentially makes fandom itself into a character, and then uses it as both metaphor and engine for the main character's healing. It doesn't present healing as linear, shows everything in shades of grey, and has spawned both its own fanfiction and fanart as well as so many comments from people explaining how the story helped them with their own situations. And best of all - the author (hi if you're reading this, you're wonderful) has given me permission to cite it. So this is now something I'm poised to start writing up.
The other side to what I'm working on to sort the chapter's issues comes from a workshop I did at the FSNNA conference this month. It was on a particular kind of data analysis called topic modelling and works as a really good jumping board for identifying connections within a large data set (which, if you take the write-in question text for my survey, I am working with). My hope is to use this to form a structure for my close-reading reflections, as well as potentially highlighting things I might've missed.
But, I am trying to be good and take this all slowly and steadily. Whilst I am behind where I wanted to be, it is only natural - as my mentor reminded me this week - that as my research progresses it'll deviate and transform in unexpected ways. This chapter may take a little longer, but others may be a little shorter - for example, my next chapter is on roleplaying and as my MA thesis was on that I have a lot more existing knowledge about the current work on it in academia.
And lastly, I had my first academic publication! I'm a real academic now! You can read my reflections on Madness, control and agency in video games at the Polyphony, where I talk specifically about the games Pillars of Eternity (& sequel) and Please Knock on My Door.
Thanks everyone so much for your continued interest in my work - I really appreciate it <3
Flourish and Elizabeth celebrate their eighth (!) anniversary with eight (!) guest responses to their traditional query: What changes and trends have you observed in fandom over the past year, on a broad level and/or on a personal level? Topics discussed include accessibility on fandom platforms, rethinking “canon” in an era of franchise oversaturation, finding fandom at scale vs. deeper individual connections, and the effects of the Hollywood strikes on fan conversations today—and the entertainment industry in the future.
Click through to our site to listen or read a full transcript!
Please listen to this, but *especially* please listen to what Stitch said. It's very easy as a white person to take the hopeful position like I did in my observation - and for that hope to drown out the voices of Black/PoC who are experiencing something very different. (It feels very like the issue with toxic positivity, which I get a lot as a disabled person).
I do still think people in fandom are starting to fight more for what's important. But it's imperative we listen to people like Stitch and appreciate just how many of those people are falling on the side of anti-Blackness. That we get involved with anti-racist work & trust PoC when they say things are bad.
I'm very grateful to have been included in this episode, but more than that I'm grateful to Stitch for offering such a hard to express perspective - one that I'm going to do my best to learn from. I hope you do too.
As I've said elsewhere, the bulk of my analysis of the survey will focus on the qualitative questions - those are the ones that are most relevant to my thesis. But given the intersectionality of both my thesis and fandom in general, it's also super interesting to look at the demographics.
So today both for your interest and my benefit, I'm going to go through the demographics questions and chat about each of them in turn, especially (but not purely) with reference to what it could mean for my research.
For the purposes of this initial post I am just using the infographics generated by Google Forms - I'm working on putting together better ones which I will share later on.
Enjoy!
Q1: Do you experience or have you ever experienced any kind of mental illness or similar?
It is unsurprising that in a survey about mental illness, most people who completed it have experienced it. 443 of the 488 respondents answered yes to this question for a total percentage of 90.8%. There's not a ton of fandom demographics out there on mental illness, so we can't quite know what this is like in comparison to the general fandom population (shoutout to @ao3demographicssurvey2023 for the data we will hopefully have soon!) - but it's reasonable to presume these figures are higher than normal given the topic of the survey.
Q2: Do you have any kind of disability, chronic illness or similar?
This is the first select all that apply question, so this chart is a little more complex to read. To just look at disabled vs non-disabled, we can see that 20.5% declare themselves to be non-disabled, with the remaining 79.5% being disabled. The %s we can then see in this chart by the disability types are a % of the total.
We do have some general disability demographics, though they are also from more niche surveys, like Renée Nielsen's 2021 survey on Whump which puts disability % as only 16.9%. However it's important to note that Nielsen queried neurodivergency separately, and saw 46.3% identifying as neurodivergent. So when you take that into account these figures aren't quite as radically dissimilar as they might otherwise appear. (Obviously some people in Nielsen's survey will have said they are both ND and disabled so this isn't exact, but it's a general idea).
As someone who has a chronic pain condition, it was very interesting to me that so many people identified with that. I hadn't originally intended to list chronic pain separately (as it's so often caused by something else, like a physical disability or chronic illness) - but in discussion with people on the Discord for the above mentioned AO3 Census, decided to do so, and I'm very glad I did. I'm super interested to see what these figures come out as for the 2023 Census.
Q3: If you experience mental illness, do you consider your mental illness to be a disability?
Firstly a shoutout to my past self for somehow not ticking 'required' on this question and allowing two people not to complete it. Oh well. It is likely they fall into the "I do not experience" category anyway, or they are people who prefer not to disclose.
So, this question was one I was most excited about, because it's such an interesting thing as someone who's approaching mental illness at least in part from a disability studies perspective. One of the critiques of disability studies is that mental illness is often either an afterthought or not considered at all. (In her incredible book black madness :: mad blackness, Pickens points out that disability studies has inherited some very ableist assumptions of 'mind', calling back to the awful Cartesian duality).
Therefore it's not really surprising that so many people have complex feelings around whether their mental illness is a disability or not - especially with a high % of neurodiverse people. Whilst I included neurodiversity in the disabiility question and not separately, many people do not prefer to consider their neurodiversity to be a disability.
The question of whether mental illness and/or neurodivergence are disabilities is a very loaded, very personal thing, and I feel super strongly that we should all use the terminology that we prefer for our experiences - especially in a culture where the terminology is so highly medicalised, pathologised and curated by bias and marginalisation - but we're not here for my anti-DSM rant today.
I think this question really highlights that complexity and it's that ability to rest in vagueness and uncertainty that characterises Mad Studies for me, and is super interesting as a result.
Q3: How old are you?
Yes, the legend for this one is so long it had to go over into two images.
Here's the fun thing about this question - you can see fandom aging. In the 2013 AO3 Census, the biggest categories were 19-21 at 23%, 22-24 at 20%, and 25-29 at 19%. In this survey, we have 30-34 at 23%, 25-29 at 20.3%, and 35-39 at 16.6%. I'm very interested to see what the 2023 Census figures come out as and whether they display this trend of the dominant age group shifting upwards.
Having gone through a lot of work to be allowed to survey people 13 years and older, it was also notable to me that only 2 people aged 13-15, and 14 people aged 16-18 responded. This may well be a product of where and how I shared the survey, as well as the age shift in general, which is why I suspect we need a comparison like the Census to see the difference.
Q4: Which geographic region best describes your current place of residence?
No surprises here, I'm a European person who shared the survey only in English and on Anglocentric platforms - the more influential people and groups that shared the survey were also strongly US-centric.
Having said that it was lovely to see we got some representation from all of the options, even if only a few from some.
Q5: What is your race? Select all that apply.
I'll be honest, this is one of the first demographics that disappointed me. Whilst I cannot of course fully control the survey's reach once it's on social media, I'd hoped to see a more representative group from a racial perspective.
There's a huge intersection with mental illness and race. BIPOC are not just more likely to experience mental distress, they are also more likely to have one or more of the other factors that make you more likely to experience it - such as poverty or housing insecurity. So it's definitely a weakness of this survey that such a huge % of respondents were white.
I do wonder whether it has anything to do with the ongoing racism present in the AO3, and on social media in general - whether that's made people less inclined to engage with fandom spaces that might harm them - but it may equally just be that I am white, my personal and professional circles are predominantly white, and thus those circles are more likely to have the same white bias.
Some of it will likely be language barriers too, but when you have no funding it's basically impossible to conduct this kind of research across languages.
I hope that future research can be conducted to properly elevate BIPOC voices and make sure their perspectives on fandom and mental illness are heard too.
Q6: Do you identify as any of the following [queer identities]?
This was an optional question, so bear in mind the %s here will be skewed. This is one of those situations where my lack of experience came into play - if I was doing it now, with the wisdom of having started to want to analyse things, I would definitely have made all questions mandatory and always had a n/a option.
Nonetheless we can see here the usual strong weighting towards queer identity in fandom. I was especially delighted to get so many trans perspectives, which as we'll see in the next question included a really diverse selection of gender identities.
Something my supervisor encouraged me towards in my previous supervision was to look at the queer studies work in fandom and consider how that overlaps with my work. I have a strong background in gender studies and that's evolved into a love for queer theory and especially trans theory. Whilst I'm cis myself, trans theory has huge overlap with disability theory, especially in terms of self-identity and the need to constantly come out or reaffirm/redefine your disability.
Q7: What is your gender identity?
This was another select all that apply question and it is our first question that allowed write-in answers. This means this graph is a bit messy but as you can see people listed personal gender labels (some of which cross over with the given categories) as well as some longer reflections on their gender identity.
The two cut off, longer write-in questions were "I do not label but present masc" and "I am still discovering and questioning myself but this is how, for now, I identify as" - this second respondent obviously gave other options too.
As mentioned above I'm really delighted we got so many gender diverse responses. Being of a marginalised gender is also likely to lead to experience of mental distress (you will have noticed by now that all kinds of marginalisation do, goodness me, I wonder why) so it's great to have these perspectives included.
Q8 & Q9: What is your sexual orientation and what is your romantic orientation?
I've included these together so you can see them side-by-side as I think that's very interesting. Like before these are select all that apply questions with write-in options.
Longer write ins for sexual orientation were:
- I don't distinguish between sexual and romantic orientation for myself. [a more specific version of the given I do not label]
- Like before, I am still learning and questioning myself, but for now this is what I'm sure of about my sexual orientation.
- Somewhere between demisexual and whatever the opposite of asexual is, like 3/4sexual?
And longer write-ins for romantic orientation were:
- And once again, I'm questioning myself, still learning, but I think what I marked fits well enough for now, learning myself has been kind of chaotic
Shoutout to the person who has clearly gone on a journey with learning themselves lately and has given write-ins for all of these last few. I hope you keep your wonderful open-mind and insight into yourself!
Nothing here is surprising - we all know that fandom is heavily queer leaning, and it's not surprising that so many people identified as some form of queer. So whilst marginalised sexuality is also commonly alongside mental distress, I don't think for a fandom survey this will make as huge a difference, since fandom is so queer as it is.
Q10: Which religious or spiritual traditions do you believe? These options include all denominations.
Now this is where these graphs start to get really messy.
I'd first like to give another shoutout to the AO3 Census team who recommended including Folk Religion or Spirituality and Modern Paganism or Wicca, as these were things they had as common write-in responses in the 2013 Census. We can definitely see here that it's well represented too.
This is also a select all, so many of the write-in options (which I won't list this time as there's so many) were people clarifying exactly what their selections meant - such as saying I'm not sure so I picked X. I will say my favourite was "I honestly could not tell you. I've got schrodinger's religion at this point", because I think many of us have been there.
A couple of people did note that they were culturally affiliated with a religion even if they didn't believe.
Summary
And that's it for the biodata/demographics questions!
I apologise for the infographics not being amazing, this is as I've mentioned elsewhere my first time working on a project like this and whilst my graduate school offers access to software and training, it's still not something that I've got tons of experience in as a humanities scholar. With that said, I've loved the challenge and I'm very excited to get into coding the long-form responses.
What I've come away with is very much mixed - it does highlight the weaknesses of doing a specialised survey like this, and of only being really able to get it out there via social media (which means I've inherited the racial and geographic biases of my circles especially). That said I'm so happy we have so many disabilities represented, and that we have any disability data about fandom at all, even if it may not be fully representative of fandom as a whole.
I'll be doing a post next week looking at the quantitative questions around fanfiction practices, so make sure to follow and keep an eye out for that if you're interested!
Responses to a survey conducted in May 2023 on fanfiction practices around mental illness. The survey ran for 3 weeks and was circulated on
Data from my fanfiction and mental illness survey is now publicly available!
It is stored safely and eternally on the Harvard Dataverse. In accordance with the request of my ethics board (University of Kent CREAG), the demographic data has been disaggregated (separated) from the long-form responses on fanfiction practices in the public files. However, anyone can request the disaggregated version through the link above.
The data has been randomised on all three files for safety, and redacted of the thankfully small amount of identifying information that was given by participants, thus rendering it as anonymous as possible.
It is under a creative commons license that allows anyone to use it for their research, but please do cite the original dataset if you do.
Thank you to everyone who took part - I know already that there are some incredible insights here and really thoughtful reflections on how we approach mental illness in fanfiction.
When I was asked, by supervisors and mentors and friends, how many responses I wanted, I would explain that I hoped to get to a couple of hundred. That we got over double that is incredible to me.
We know that mental illness is a hugely common topic in fanfiction, and some great work has been done in adjacent categories - like research and meta on whump or hurt/comfort. But so little has been done to look at mental illness itself (both more generally and, in a way, more specifically). Until now. Thanks to all of you, we now have a bank of data that will allow not only me in my PhD, but future fan studies researchers to have an entry point into engaging with this huge and important part of fandom.
In terms of what happens next: my first point of call is checking through all of the responses to make sure no one accidentally included identifying data, and if needed, redact this from the data before it goes public. I am then required (per agreement with my institution's ethics committee) to disaggregate the personal information from the fanfiction-specific responses. Once these things have been done, I will then be able to start the process of making the data available for others to use.
Then it's a case of starting to approach it myself for study! I waited to see how many responses I would get before deciding on my methods, so now that I've got a figure I can start deciding what approach(es) I want to use.
I'm so excited for what comes next, and so grateful to everyone for responding, sharing, and just plain showing interest in what is a hugely important project to me.
Thank you so much everyone for your responses to my fanfiction and mental illness survey. As of posting we have 108 responses which is fantastic and very much enough for my own thesis, but I don't just want this data to be for me - I want it to be available to other fan studies researchers to work with and build upon.
This is the work I spoke about when I was on the @fansplaining podcast just a few months ago, and something that we just don't have in the fan stats community - our only related information is on whump, which whilst useful isn't by any means the same thing.
So if you'd like to help us learn more about how we read, write and interact with fanfiction about mental illness, please take the survey & share this post!
The survey will take you just 5-15 minutes, and will help to gather groundbreaking insights for fan studies. You’ll be asked about yourself, about how you read, write and find fanfiction about mental illness, and what interacting with this kind of fanfic has been like for you.
Full data on the study, including consent, privacy and GDPR information, can be found on the survey page.
Submissions will remain open until the 25th June 2023. Thank you so much!
This is the last day to participate in the survey! Please make sure you've filled it in if you're intending to by the end of today (any timezone).
Thanks to all your help and shares we've jumped to almost 500 responses, which is absolutely wild and wonderful. I'm really looking forward to seeing what we can learn about fan feelings about mental illness fanfic.
Thank you so much everyone for your responses to my fanfiction and mental illness survey. As of posting we have 108 responses which is fantastic and very much enough for my own thesis, but I don't just want this data to be for me - I want it to be available to other fan studies researchers to work with and build upon.
This is the work I spoke about when I was on the @fansplaining podcast just a few months ago, and something that we just don't have in the fan stats community - our only related information is on whump, which whilst useful isn't by any means the same thing.
So if you'd like to help us learn more about how we read, write and interact with fanfiction about mental illness, please take the survey & share this post!
The survey will take you just 5-15 minutes, and will help to gather groundbreaking insights for fan studies. You’ll be asked about yourself, about how you read, write and find fanfiction about mental illness, and what interacting with this kind of fanfic has been like for you.
Full data on the study, including consent, privacy and GDPR information, can be found on the survey page.
Submissions will remain open until the 25th June 2023. Thank you so much!
If you heard/read Rebecca talk about this on the first part of our “Disability and Fandom” double episode, now you have a chance to help contribute to her research!
ETA: This survey has now closed. Thank you for so many more responses than I expected! I will announce as soon as the data is available to others to use and as I make my own discoveries in working with it.
Thank you so much everyone for your responses to my fanfiction and mental illness survey. As of posting we have 108 responses which is fantastic and very much enough for my own thesis, but I don't just want this data to be for me - I want it to be available to other fan studies researchers to work with and build upon.
This is the work I spoke about when I was on the @fansplaining podcast just a few months ago, and something that we just don't have in the fan stats community - our only related information is on whump, which whilst useful isn't by any means the same thing.
So if you'd like to help us learn more about how we read, write and interact with fanfiction about mental illness, please take the survey & share this post!
The survey will take you just 5-15 minutes, and will help to gather groundbreaking insights for fan studies. You’ll be asked about yourself, about how you read, write and find fanfiction about mental illness, and what interacting with this kind of fanfic has been like for you.
Full data on the study, including consent, privacy and GDPR information, can be found on the survey page.
Submissions will remain open until the 25th June 2023. Thank you so much!
As part of my PhD where I am researching mental illness in interactive and immersive media types, I’m undertaking a project on how people read, write and interact with fanfiction about mental illness.
The survey will take you just 5-15 minutes, and will help to gather groundbreaking insights for fan studies. You’ll be asked about yourself, about how you read, write and find fanfiction about mental illness, and what interacting with this kind of fanfic has been like for you. This data will be shared openly so that other fan studies researchers can work with it and help us better understand this huge part of the fanfiction community.
Full data on the study, including consent, privacy and GDPR information, can be found on the survey page.
Submissions will remain open until the 25th June 2023.
Thank you so much!
We're about to hit 100 submissions - thank you SO much, everyone! Please do keep sharing the survey as the more responses we can get, the better for the data being used in the future.
ETA: This survey has now closed. Thank you for so many more responses than I expected! I will announce as soon as the data is available to others to use and as I make my own discoveries in working with it.
ETA: This survey has now closed. Thank you for so many more responses than I expected! I will announce as soon as the data is available to others to use and as I make my own discoveries in working with it.
As part of my PhD where I am researching mental illness in interactive and immersive media types, I’m undertaking a project on how people read, write and interact with fanfiction about mental illness.
The survey will take you just 5-15 minutes, and will help to gather groundbreaking insights for fan studies. You’ll be asked about yourself, about how you read, write and find fanfiction about mental illness, and what interacting with this kind of fanfic has been like for you. This data will be shared openly so that other fan studies researchers can work with it and help us better understand this huge part of the fanfiction community.
Full data on the study, including consent, privacy and GDPR information, can be found on the survey page.
Submissions will remain open until the 25th June 2023.
Thank you so much!
Delighted to report that last week I finally got ethical approval for my survey - and I'm releasing it on Monday!
I will naturally be talking about this incessantly everywhere, and sharing the form everywhere you can imagine once it's out. I really hope that we get a good number of respondents so that not only I, but future Fan Studies people can get some really interesting insights into fan practices around mental illness.
My other research has been a little disrupted of late as I'm dealing with some pretty hefty personal stuff, but I've made progress nonetheless in getting the intro to the chapter written, and this week I'm also going to look at doing what my supervisor and I are calling a "mini lit review" - essentially summarising what work has been done thus far on fanfiction & mental illness. As there's not tons this section will basically just be about whump research.
But yes, very excited and looking forward to sharing everything from Monday! The survey will be open for three weeks so there'll be plenty of time to respond.
Hello, friends - long time no see. As ever, the world persists in hurling difficulties in my direction which then cause work delays - on top of which I've also been observing a lot of strike action as a member of my union, the UCU (who have won some important progress with pensions and I'm really, really hoping we might get some progress on precarity - maybe - probably not but I can dream).
All of which is to say, I have only just put my survey in for ethical proposal this past couple of weeks. It's been signed off on by my supervisor, I'm partway through getting approval from my school representative, and after that it needs to go to the central committee for formal approval.
I thought I'd go over what this application entails for those who might be curious, as it's certainly something I'd never had to deal with before! For those unaware, I'm preparing to do a survey on fanfiction practices around mental illness. Read on for all the nitty gritty of ethical approval in the UK university system.
So first of all there is a form you go through to work out if you even need ethical approval or not. This is a checklist where if you answer yes to any of the questions, you need to get formal approval from the central research ethics committee. For me, this included things like: the research will gather data around sensitive topics; the research is with vulnerable groups; the research is personal or psychological in nature.
Once that's done you have another form to fill out (you'll spot a trend here), where you give the full detail of what the project is and what it will be studying. This also requires you to explain a lot about the security of data for data protection purposes, that you know how to do GDPR compliance, and if you're studying under 16s, justifying this & explaining how you'll protect underage persons during the study.
Side note: working to understand GDPR was the worst part of this process.
This form requires a lot of supporting documents. You have to give the full research proposal, a copy of the consent form, participant information, proposed research questions (if relevant - for me it's obviously the main part), and finally any advertising copy around it. My application literally contains an example TikTok script!
Once you have all this filled in (this will take a while), you then send that to your supervisor. They give you any changes, which wasn't many for me, and then it's off to the school representative. I'm in the Division of Arts, Humanities and Architecture, which is then made up of various Schools - I'm in the School of English. So my application goes off to that representative. I've had some feedback from them already which has been super helpful, and now I'm waiting on their confirmation that I'm good to send it to the central committee!
The way that process works is that they assign two random reviewers from their list of reviewers, and they go over my application and approve/approve with changes/reject. This can take anything from three days to three weeks; bit of a piece of string. But once that's done, I'm good to start!
I'm very excited because I'm so keen to have this data and to really get to see what fanfic authors & readers do and feel around Madness. We have nothing remotely like this data wise so it's going to be super exciting to see.
So that's your update! Hope you enjoyed this glimpse into academic bureaucracy, haha <3
This is a pilot survey to discuss and gain feedback about question design for the AO3 Demographics Survey 2023 project. You will be shown a
Hey everyone!
As we are working on question design, the AO3 Demographics Survey 2023 will be running a series of pilot surveys. These are to seek feedback about which questions should be included, the best phrasing of questions, and similar design concerns.
We are now asking for feedback on questions from the "AO3 Usage" section of the survey. This section deals with how participants use the site Archive Of Our Own and their preferences for different types of fic. If you are willing to give feedback, we estimate the survey will take about 15 minutes. No data collected as part of this survey will be included in the final project; it is for survey design purposes only.
This pilot survey will run for about a week and we hope to get around 75-150 responses. Signal boosts are appreciated. Thank you!
Reblog because I've been in the Discord helping where I can with this survey and the incredible people there have helped so, so much with working on my own survey. Please go support the pilot surveys!
It's been a slow start to the year, but as term officially starts today I wanted to do an update on how things are going (I don't follow terms, I work 12mths a year, but sometimes it's nice to use them as milestones).
Currently I'm working on two main targets ahead of my next supervision in mid February, which are:
1. General reading - especially trying to get some disability studies in my brain right now.
2. Planning my survey on fanfiction & Madness habits of fans.
I'll be honest - I don't feel like I've made enough progress with either. I've been reading very slowly, and only last week did I manage to get some planning done on the survey. So I think my plan is to start doing my best to buckle down and get the survey planned out.
Right now what I have is a list of topics that I want to get data on. These aren't fully planned out with formalised questions etc yet - nor even clear as to what format I want the responses in (e.g. multiple choice vs open text response etc). But I think it's a pretty good overview of the things I'm aiming to gather. Here's the list as it stands:
General
- Demographic data re: Madness (i.e. how many people identify as some sort of Mad)
- Demographic data re: disability, and whether they view their Madness as disability if they have ticked both (this may need a 'kind of' response, as I know I'm on the fence with that)
- General demographic data such as race, gender, sexuality - for comparison to general population and giving more options for using the data in the future.
Fanfic Practices
- Does it matter to you if fanfic about Madness is Mad-authored?
- Do you think it makes a difference if fanfic about Madness is Mad-authored?
- Have you ever written fanfiction about Madness?
- If so, and you are Mad, did you write about your own Madness?
- Do you read fanfiction about Madness?
- If so, and you are Mad, do you read about your own Madness?
- How do you find Madfic - likely multiple choice with options like tags, naturally/scrolling, recs, following authors etc.
- How, if at all, has reading Madfic benefitted you?
- How, if at all, has reading Madfic harmed you?
- Previous two questions, but for writing!
- What do you wish authors did differently in Madfic?
- What's good about Madfic?
- Do you feel the AO3 manages tags around Madness well? E.g. how do you feel about the existence of tags such as "<Character> is SO OCD".
There are a few caveats here - firstly a reminder that whilst I use the term Mad(ness), I don't expect everyone to and you should use the terms that suit you! I will likely write the survey using the term mental illness purely to make it more accessible to a wider audience, but with the note that people should consider it to be whatever they prefer.
Secondly, this is VERY much a draft, and as I say not representative of wording. The past couple of questions especially are ones I'm not 100% sure on. I kind of want to know, but it might also just be beyond the scope of this survey - which I want to focus on fanfic practices more than anything? But hopefully that gives some insight into what I'm interested in.
Now that I've got my ideas down, I want to go through other fan surveys/studies and look at how they've done things, from question wording to the way they manage their data sets (I want mine to be open data, so that others can study it), or what they use form wise. Start to think about those sort of things. Which is a lot, but I just want to get as far as possible before my supervision.
I'm very open to comments from people with experience in fan surveys, just bearing in mind this is as I say a very early draft. I know wording of questions is super important and I'm hoping to improve my questions a lot. Or recs of good surveys to look at for examples!
Either way, hope this has been interesting & offered insight into the study I'm going to do.
This week, as term ended, I was at a two day workshop/conference on research ethics with regards to illness narratives. It was one of the most varied collections of people I've seen - from my fanfiction work to someone studying human remains - and yet we all had so much in common and so much to discuss.
Something that got talked about quite a bit was the issue of disclosure and positionality. For many of us in the medical humanities, our positionality in relation to the illness(es) we're studying is considered important. It's integral to my thesis. But other researchers expressed that this was hard for them, because they actively did not want to disclose their health status. It's especially awkward with some illnesses - consider those dealing with things like infertility, with STDs, with something like urinary or digestive issues.
I completely agree that no one should be forced to disclose their health status as part of their research, even though my positionality is a fundamental part of my own. There's parts of my health I don't talk about! Even still, I had an instinctual feeling of defensiveness when it was brought up, and I spent quite a lot of time thinking about why that is.
My conclusion was this: for me, disclosure is a radical act. I have two sides to my disability, the chronic pain/fatigue side and the mental/neurodivergent side. Both sides are things that I have been taught (primarily by ableism) to repress. I'm a woman, so my pain is dismissed. I've had instances in the past where people have told me to stop sharing my emotional distress, because I was being too depressing and no one wanted to hear that much of it. There is a near constant voice in my head saying that I should not take up space, be seen, express my pain.
By centering my experience, by talking about that experience, by allowing it to exist out in the world, I am - essentially - giving a giant fuck you to that voice. To the ableist world that thinks that I should vanish into nothing, and the parts of my Madness that parrot that. In a way, it's the very thing I did in response to the chronic and traumatic bullying I experienced as a child: being more loudly, more proudly the very thing that they said I was.
People should absolutely choose whether to disclose things or not, be that in research or in general. I believe this wholeheartedly. But we need, also, to recognise the rebellion inherent in disclosure for many disabled and Mad people. To acknowledge how brave it is to shout your existence into a world that tries to eradicate it. To hold space for both disclosure and non-disclosure, and everywhere inbetween.
Grateful for the workshop & participants giving me the thinking space to process this, the inspiration for the realisation, and also Alice Wong for Year of the Tiger, which I was reading alongside this and helped me process it a lot too.
One of the key approaches of my thesis as a whole is the relevance of my identity as a Mad researcher. Part of wider approaches within disability studies, neurodivergent studies and Mad studies as a whole, it's the "nothing about us without us" idea that research into the experience of Madness should be led by those who know what it's like to experience it. This is especially relevant since I am studying the very affective side of things - what it feels like to experience this.
Today whilst doing my ethics writeup for my supervision, I was going through my notes and found a quote from Matt Hills about autoethnography's capacity to examine the algorithmic experience of fans - and/or the meta level experience, going beyond just the reading and writing of the artifact (which is what gets focused on a lot because we do love having an artifact to research).
Which just made me jump in delight because it makes the structure of my thesis so perfect. I've taken inspiration from Ria Cheyne and Ebony Elizabeth Thomas in the structure of my thesis - which I can ramble about in more detail at some point, but the key thing for right now is that each of my chapters has both a media type and an aspect of Madness that it focuses on. My video games chapter was on delusion, disorientation and dissociation - my fanfiction chapter, meanwhile, is on mood and emotion.
So how perfect is it that not only am I researching mood and emotion, I'm doing it in a field that really sets you up for positioning your own emotional experience as a researcher, in a wider field (med & health hums) where researcher identity is also powerful and relevant. I'm in awe of both my own brain and the world sometimes, that I can instinctually know things are connected and then dive into it deeper and find all the ways how. That'd be the power of feeling, topically.
It's timely because I'm in a period of autistic and disabled burnout right now, and that's meant that I'm really struggling to both experience and regulate emotion. I also had the realisation that often what *I* do as a fan is dump really heavy, emotional things into a fanfic and then never feel anything about them again. Every time I go back to read my own works I am astonished by how much feeling they inspire both in me and the people kind enough to comment. So the idea that my feelings, no matter how complex and sometimes hard to access they are, could be this important - it's really lovely.
Anyway. I love my research. A lot. This has been a nice feeling to round up the bulk of my work for the day.
