The Importance of Digital Community
This post is the fourth of a collaboration series with the amazing Lori (@budtobloomlori). Lori (they/them)is a disabled model, and creative who uses the mediums of writing and art both as an outlet, and a way to raise awareness about life with chronic illness. Some of the conditions they live with include Ehlers-Danlos Syndrome, PoTS, MCAS, and mental illness - all of which have been discussed in detail over the course of their 3 years as a writer. They
Prior to acquiring disability at the age of 13, I was oblivious to the significant lack of access for disabled people in society. Cracks in pavements, lack of dropped curbs, narrow pathways, no ramps or lifts, heavy doors, high counters in stores, and on public transport.
In all fairness I was majorly discouraged from going out because it was a new obstacle I had to face, knowing it wasn’t exactly something you can workaround. It also significantly limited my independence and freedom, as it meant relying upon my mum for transport, and she wasn't always available - so spontaneity was replaced with realistic forward planning, with the strong possibility that on the day I would be too ill to go.
So I often didn’t, and missed out on a lot of things, like forming a group of friends, going to prom, using the bus, learning amongst others, and being involved in clubs. Having that sense of community and a group of people who share the same experiences, interests, and values as me.
The whole process of diagnosis and treatment can be convoluted, confusing, distressing, and overwhelming at times, along with having many positives of course. But when it comes to chronic illness, and it’s a case of managing the condition and learning to survive and hopefully thrive with it, it’s exhausting and isolating.
At the beginning of my journey, I didn’t know anyone else with the same conditions as me, and it wasn’t until I was 17 that I began documenting my experience and feelings about being young and disabled, about the turbulent nature of co-existing mental and chronic illnesses, and the difficulties with dating, sexual wellbeing, self-confidence, and body image.
Through this hobby, I found a community, and over time - with collaboration, interaction, engagement, and forming friendships with fellow chronically ill folks, I finally felt that sense of togetherness and mutual understanding. That the space didn’t have the hurdles and obstacles I experienced outside. However, this in itself shows a privilege as, within the community, I saw people who looked like me, of a similar age, using wheelchairs and other aids and looking vibrant, happy, and empowered. This was such a source of inspiration as I was embarrassed to be seen in public with my chair and felt self-conscious. So it provided me with that sense of determination and hope that with perseverance and practice I could slowly unlearn these hold-ups.
This was a stark contrast to the environment I had in the ‘real world’ because some of the non-disabled people in my life at the time didn’t understand why my condition would fluctuate, what constituted my dynamic disability, and why certain language, invasive questioning, and being excluded would hurt my feelings in the way it did. Had it not been for the community of people who also share their experience, I wouldn’t have understood what ableism is, what internalised ableism means, nor would I be able to realise the complicated relationship I had, and in some ways continue to have, with my disabled identity. When I look back over the past few years of content I have produced both for my blog, in collaborations, and on my Instagram page, I see the change in how I discuss my chronic illnesses. I no longer show the same degree of loneliness, confusion, and sense of being misunderstood, which is why when the BBC documentary 'Sickness and Lies' came out about the chronic illness community, specifically on Instagram, which is continuously targeted by trolls on the Illness Fakers subreddit, I was livid. It felt like my family, my people, and my community were simultaneously feeling the pain and anger which comes with ableism, re-traumatisation, and prejudice.
Strangely, it was ever so bittersweet because I witnessed the community band together to send complaints, to sign petitions to take down the episode, report the subreddit, and share their own work, and that of fellow creatives, which talked about the impact of these false narratives and clickbait titles. The very real panic we feel when we’re dismissed and disbelieved; not because we’re ‘faking’, but rather because we’ve experienced misdiagnosis, complications resulting from being dismissed and unmonitored, the anxiety we have felt when attending doctors appointments with a new load of symptoms.
So not only has the community provided me with confidence, empowerment, inspiration, and support, but it's really changed how I see myself as a disabled person, but for the good.
However, it would be wrong of me to fail to mention that there are issues within our community, and that's regarding the significant imbalance in the ethnic representation in the chronic illness space - which means that the personal experiences we share cannot be reflective of the experiences those from additional minority groups, particularly race, experience because of the cultural, socio-economic, and prejudicial factors which we simply don't experience.
So, please take the time to visit the following creators' pages:
- Amplify BIPOC Voices (@amplifybipocvoices), a project founded by Rhi, a South Asian creative from the UK, to platform the stories of non-white disabled folks, particularly from the desi community
- Chronically Brown (@chronicallybrown)
- Be Anti-Ableist (@beantiableist), a movement founded by Leah Javon (@chronically20something), a queer disabled black woman who lives with numerous chronic illnesses. The movement calls out ableism on social media and educates people about ways to unlearn ableism
- Imani Barbarin (@crutches_and_spice), is a communications director, public speaker, disability activist, and educator who writes about her experience as a disabled black woman and has worked with corporations such as Verizon and Google to educate and raise awareness of accessibility, disability, and racial inclusivity.