Abstract, Physical Disability Data:
The Physical Disability group collected social media data at the intersection of physical disability and sexuality as part of the California Institute of Integral Studies (CIIS) Human Sexuality Summer Research Fellowship. For the purpose of this work, physical disability is defined as a self-disclosed disability which can include: impairments of the neuromusculoskeletal systems including, for example, the effects of paraplegia, quadriplegia, muscular dystrophy, neuromuscular disorders, cerebral palsy, absence or deformities of limbs, , arthritis, back disorders, bone formation or degeneration, and so on. The present definition of physical disability also includes blindness and vision impairment (not corrected by glasses or contact lenses), deafness, hearing impairment, hearing loss, speech loss, impairment, acquired brain injury resulting in deterioration in cognitive, physical, emotional or independent functioning. Key terminology for physical disabilities included a practical review of the efficacy of the search terms through a trial-and-error method on respective platforms as well as a review of relevant literature. All involved researchers remained conscious of language that reflected medical diagnosis, advocacy language, and layman’s terms. Key terms regarding sex/sexuality were discussed and used regarding general sexual function and practice, though items relating directly to sexual identity were frequent in the research. Recurring themes in the data included but are not limited to: advice videos for sex and disability, sharing and educating about what positions work well with different disabilities, creators of videos sharing their sexual/ dating experiences, gratitude for transparency about disability and sexuality, gratitude for representation in videos, critique about sexual surrogates/surrogacy and health care, hopefulness about finding interabled romance/relationships mirroring people on videos, normalization of interabled relationships, normalization of sexuality for/about people with disability, pushback on the idea that disabled people are not sexy, abled people being uncomfortable around disabled peoples’ sexuality, instances of both sexism and ableism toward disabled women, appreciating disabled sex in media, and chronic illness impacting sex life.
Data Use Guide:
Physical Disability, Social Media Data
The physical disability data archive consists of roughly 878 data points gathered by a team of six Sexuality researchers divided across four social media sites. The sites used include Instagram, TikTok, Reddit, and Twitter. Data collected were publicly posted on these sites between 2018 and May of 2023, and were collected by researchers between May 24th, 2023, and August 18th, 2023. Assigned data managers reviewed data sets separated by social media sites on a weekly basis in order to maintain uniformity and to create easier to clean data, prior to meeting weekly with teams and faculty leads.
Best Practices & Process Overview:
As posts, comments, and videos were collected, researchers tracked information including:
whether the post was original or a comment/response, date posted, date collected, text of post, medium/site, thematic tag, followers, following, shares, hashtags used, sub setting/modality, image description, perceived or declared demographic data such as race, gender, and nationality, location of poster, audio transcription, whether the post was from a person or organization, disability identity, overlap with other research categories including sex work, housing and families, which researcher collected the data, and other relevant notes. Each demographic category is followed by a note of whether the identity was Perceived or Declared, visible in the data set as p = perceived, d = declared. Locations, Nationalities, gender, and race/ethnicity were noted as one word in the data set. American spelling was used when known, including notation in brackets regarding algo speak. Emoji were left as originally posted where possible and were otherwise described parenthetically. Any unknown information in a given data point led to empty cells rather than placeholder notations.
Relevant topics, Key Terms:
With a clear understanding of the individual, social, and structural level experiences of people with disabilities reviewed in current academic literature, key search terms were authored and tested by researchers on each social media site to test for relevance. Following this procedure, researchers met and agreed upon general terms to use, including but not limited to: Paralyzed/sis, Sensation/sensory, Pleasure, Orgasm, Disabled/disability, Disability Justice, Disability Pleasure, Adaptation/adaptive, Hemiplegia, Paraplegia, quadriplegia/tetraplegia, Pain (chronic), Disability etiology (congenital, chronic, acquired, non-traumatic, traumatic, progressive, Covid/long-Covid, etc.) , Wheelchair, Walking aid, Accessibility, Blind, ASL interp., Ability variance, Ehlers Danlo Syndrome/ EDS, caregivers, POTS, Crip, Adaptive sex toys, Neuropathy, Long COVID, Nerve Damage, Chronic illness, Chronically sick , Invisible illness/disability, Immunocompromised, Disability Representation, Inspiration Porn, Cane, Disabled and Sexy, Body autonomy, Ableism, Limb loss/ limb difference, Disability stigma, Disabled and Queer, rheumatism/ arthritis, Degenerative bone disease, ALS, and Chiari.
Platform Specific Information
TikTok data was gathered through both the mobile app and the desktop websites with researchers choosing which one to use based on personal preference. We decided not to use an application programming interface (API) for data extraction. We instead created new accounts and found videos through searching key terms relevant to each topic group. Some researchers snowballed from the videos found using search terms. Videos were transcribed using the dictate function in Microsoft Word and edited for accuracy by each individual researcher. We excluded videos that were longer than the 3 minute mark. Comments on videos were included if they were relevant to the topic and added to the conversation. We felt that it was especially important to include comments that the creator of the video interacted with or that had a lot of general interaction (i.e. a large amount of likes). Only videos and comments that were posted between January 1, 2018 and May 31, 2023 were recorded. We excluded any videos that were not in english in order to avoid any translation errors. We noted several categories that were unique to TikTok: sound used/relevant lyrics, number of favorites, number of views, number of shares, listed pronouns, and creator interaction.
Fellows on the Twitter team created new, unverified, and unidentifiable accounts. This was done in order to bypass any algorithms that could be found during the search process. Because each Twitter account requires at least one person or organization to follow, I followed ESPN, a sports organization. Data was collected using the advanced search options. Filtering the date range from January 1, 2018 to May 31, 2023, we further enhanced the search by requiring that each post have at least 2 likes. This was done in an effort to reduce data from bot accounts. Terms that I used to do a Twitter search include ‘disability and sexy’, ‘disabled pleasure’, and ‘wheelchair sex’. Through the data collection process Twitter underwent change under CEO Elon musk. Twitter became X and ‘tweets’ became ‘posts’. The functionality of advanced searching did not change.
There were two YouTube collectors for the disability team, Raheleh Ghasseminia and Hana Choi, as the team was additionally divided between physical disability and neurologic disability content with acknowledgement that there would be overlap between the two disability subsections. The group agreed to split into two disability sections since it was anticipated that there would be copious amounts of content around sexuality and disability and that the content would be sufficiently disparate in context to warrant individual attention. The disability and sexuality research is often also differentiated between people living with neurological conditions and those with physical disabilities so our data collection methods reflect this differentiation in sexuality and disability scholarship in general.
Data collectors searched YouTube in an incognito internet browser window with a list of key terms agreed upon a priori by the disability group as a whole. Data collection occurred for each set of key terms until saturation was reached or until comments were no longer relevant. The data collector then moved on to the next set of key terms. Key terms are documented in the data sheets.
The research leads decided that YouTube data collectors would not watch the videos but would primarily focus data collection on video comments. This proved both prudent and challenging. The pace of data collection would have been significantly slowed if collectors watched each video in detail. Rather, data collectors watched videos for context if necessary and otherwise focused on the comments and characteristics of the commenters.
Taken as a whole, comments were found to be in the vein of gratitude for representation and visibility of the coexistence of people with physical disabilities as sexual beings. Some controversial topics such as sexual surrogacy intersected with these concepts and divided commenters in favor or against such practices. These are initial impressions, however, since data collectors did not code or interpret the data.
To collect data on Reddit, fellows created new Reddit accounts through school emails and utilized an incognito browser to prevent personal algorithms from interfering in search functions. When setting up their new Reddit accounts fellows were asked about new account demographics in which they selected 18+. Reddit requires new accounts to select three required areas of interest and follow at least one subreddit; these were selected in relation to the scope of the fellows’ specific topic area. With the exception of one fellow, all searches for key terms were done within the Reddit site itself using its search algorithm rather than a third party search. Fellows did not comment or vote on Reddit posts, and did not use their new Reddit account to engage in purposes outside of the fellowship. In order to track and return to posts, fellows either used the ‘save’ function on Reddit, or tracked the post through its unique post ID. As a final requirement, fellows did not request access to private pages; during the first week of data collection some subreddits temporarily went private or ‘dark’ in protest to changes in the Reddit API pricing plan. Fellows did not collect data from pages that went dark during this time, only on pages that had open public access. An application programming interface, or API, was not utilized to conduct searches on Reddit.
Informed by Proferes et al. (2021), fellows developed a system to track posts, comments, comment thread order, links and/or media from posts as well as the voting structure on original posts, information of subreddits themselves, as well as the required columns including demographic information of poster. The tracking of posts and comments was developed to closely replicate Reddit’s unique nesting structure and capture the most accurate flow of conversation. Fellows curated their recorded comment threads by excluding comments with text assessed as either repetitive or nonsubstantive. In order to maintain the nesting structure in the event of an excluded comment, the comment thread is continued with the next continuous thread number. All Reddit posts were sorted by time on the Reddit page rather than the default setting of ‘popular’ addressing Proferes et al.’s (2021) discussion of Reddit’s inherent structure and algorithm that tends to drive conversational patterns to the most controversial (Shepher, 2020; Proferes et al., 2021).
Actual searching and collection of Reddit data was performed in two different ways, fellows either used the main search bar built into Reddit to pull information from a combination of keywords (topic area term and sexuality term) and then narrowed their scope through the date range for data collection (January 2018 - May 2023) and applicability of material; or they went to topic specific subreddits and searched within the subreddit the combination of key terms. Fellows were encouraged to do both to pull a wide range of information, and find applicable posts outside of subreddit communities. For mega threads fellows reviewed content of comments and recorded based on applicability to scope of research and reduced repetitive comments.
Proferes, N., Jones, N., Gilbert, S., Fiesler, C., & Zimmer, M. (2021). Studying Reddit: A Systematic Overview of Disciplines, Approaches, Methods, and Ethics. Social Media + Society, 7(2). https://doi.org/10.1177/20563051211019004
Shepherd R. P. (2020). Gaming Reddit’s algorithm: R/the_donald, amplification, and the rhetoric of sorting. Computers and Composition, 56, 102572.
Tillewein, Heather; Franklyn, Grace; Frederick, Valerie; Ghasseminia, Raheleh; Michels, Cameron; and Stevens, Emily, "Investigating the Intersection of Physical Disability and Sexuality" (2023). Summer Sexuality Fellowship. 4.
Available for download on Sunday, September 01, 2024