Image Description: Horizontal image. In the image, a person is seen scrolling on a phone, what seems to be on social media. Only the hands and phone are visible. 

Social media is centered around how the outside sees in; how the followers perceive the poster’s content, how the likers engage with the creator’s post. More than 1 billion accounts are active on Instagram, with an engagement of 500 million accounts per day. Facebook, Twitter, TikTok, and Instagram have created the ability to live vicariously through influencers, reality TV stars, sports stars, and, more recently, disabled people. 

Emerging from the long history of inspiration porn (that is, the act of putting disabled people on a pedestal as ‘inspiration’ to ‘be your best self when even they can do it!’) are disabled creators and influencers focused on rewriting the narrative surrounding social media’s presentation of disability. Creators are the center of the page, rather than reposts; influencers are sharing their personal stories, rather than ‘pick me ups’; disabled people are using social media as the connection network it was always intended as, rather than reinforcing the history of isolation the disabled community has long experienced. 

Advances in technology are part of this change. Screen readers and the rise in closed captions allow blind and hard of hearing/deaf people to consume media the same way their nondisabled peers do (another example of it.)

Because of all of this–creators like Elise are able to find their community and even get answers to their medical questions. 

Elise Hartman is a 21-year-old disabled influencer (@collagen_chronicles_ on Instagram) who began her journey at the beginning of the pandemic last April. With a long history of health issues, and frequently missing classes and life events, Hartman wanted a platform to update friends and family without overloading her personal account. That’s when she made the decision to start documenting her health journey, something that has allowed her to be diagnosed with several disabilities. 

“It was in April of 2020 [that] I was like, ‘I want to do something with this but I can’t make one account because I have so many issues.’”

In July 2020, Hartman was diagnosed with Ehlers Danlos Syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), interstitial cystitis, and mastocytosis. Before this, she wasn’t even aware these syndromes existed–and learned about them because she decided to start her Instagram page. 

“I found this girl’s YouTube channel, Izzy Kornblau… she’s so great. I learned everything about EDS and POTS from her,” Hartman said. She also cites Izzy as the reason she was inspired to create her own page–because of the connection she instantly felt. “I was watching her, and she felt like a friend. She had know idea who I was, but she’s like a friend who gets it and can help me. I want to do that.”

Since April 2020, Hartman has amassed 5.5 thousand followers and reached millions of people with her viral reels depicting life as a disabled person. She creates content both humorous and serious, sharing resources about getting diagnosed and striving to be the person Izzy Kornblau was to her.

Some of her most popular content comes from the idea of relatability; by Hartman showing her personal health experiences, millions of users are connecting, relating, and finding a community in the life she describes. 

For disabled people, this community and connection is something that has been sorely lacking and much needed. Hartman originally started this page as a chance to share her journey for her own mental health, but soon realized she was creating a space for disabled people she never knew she (and others) needed. 

Hartman, when asked about her favorite thing about running her page, said, “The friends I’ve made. There’s so many people that I never would have met or talk to that I talk to everyday. It just feels like this different bond that I haven’t had with anyone else cause they get it. I would really just say the community of people. For the most part it’s all wonderful. That’s my favorite.”

Unfortunately, it’s not all positive. Like any influencer, Hartman gets her share of Internet hate. 

“[The hardest thing is] people being mean. I haven’t gotten a ton [of mean comments]. I feel like a lot of the ones I get are people questioning the legitimacy of my issues or thinking I’m a hypochondriac,” she said. “I’m trying [to be] open and honest so I can help people, but at the same time I feel like I’m opening myself up to a lot of hurt. People that don’t get it can take my vulnerability and be rude. I’m very aware that in order to help people I have to be open but that means people can use that to be mean.”

Because of that, Hartman has been forced into situations where she has felt she had to share certain pieces of information, just to prove herself. 

“When I get the mean comments, I feel like I have to justify it by explaining things that I didn’t want to share,” she said. 

Hartman is not alone in feeling this way. Oftentimes, disabled people are meant to feel that they owe it to others to explain their medical history to prevent being seen as a liar or a fake. With a platform like Instagram, this is heightened to such an extreme that any “hidden” information runs an influencer the risk of being called a fraud or disingenuous. 

In a community of people surrounded by medical trauma caused by gaslighting over symptoms, these “disingenuous” comments hit hard. Though she strives to maintain a balance, Hartman often finds herself struggling with the mean comments about her journey. 

As someone who’s medical diagnoses came from extensive research and personal theory, Hartman is especially sensitive to the hatred towards self-diagnosing. 

“The most common thing I hear is, ‘Don’t self diagnose, that’s dangerous.’ I don’t think we hear enough that our medical system is screwed up and that doctors gaslight people. The conversation needs to shift. Self diagnosing–I don’t think that’s a good thing, but I feel like there’s a difference between doing research and saying ‘I think I have these things and I want to actually be tested for them and have my doctors take me seriously,’ and being like ‘Yes, I have it,’” she said. 

Her biggest piece of advice: “You know your body best… I think it’s just important to talk about.”

Hartman’s hopes for the future are that she continues to spread awareness and help people–whether by her Reels, the links she provides, or the connections she makes with people. 

In a growing community of disabled influencers, taking back the narrative of what disability means to an individual, rather than a society, has been at the forefront. As inspiration porn lessens and influencers begin to use their pages to promote awareness and activism, it is important to remember that medical information is, and always will be, personal. 

A viewer will never be entitled to a new diagnosis just because they have been following an influencer’s journey from the beginning. A follower is never owed an explanation of an absence, which is more than likely due to health. Even close friends do not warrant a disabled person’s medical history.