I am someone who has newly entered many spaces. I often lurk from the beginning, aware I don’t know anything. As a multiply-marginalised and multiply-disabled person, it has taken me a while to get any grip on who I am and how I experience the world.
Finding labels like nonbinary, queer, disabled, and neurodivergent have been a powerful tool for me in a society that avoids talking about these communities. However, it has been a rocky journey walking among the different sub-categories of the disabled community, as someone who embodies more than one.
I have found some of the perpetrators of gatekeeping rhetoric are people newly aware they have a disability. As 80% of people in the UK acquire their disabilities in life vs 20% who are born disabled (Source) the detachment from the wider community, and all its wealth of education, leads to some iffy takes on self-diagnosis.
A popular claim I hear is you shouldn’t use any disabled identity label without a diagnosis. They do this as they openly admit why they cannot access diagnosis.
It goes without saying that these are all personal experiences. I understand a lot of these responses and behaviours come directly from an ableist society. This is not everyone and I have accessed lovely spaces and met kind people, this is an example of the common trope ‘the smallest groups tend to be the loudest’ in community spaces.
It’s the classic trickle-down effect. People we are told to trust, have power over us, and the narrative that’s mass-produced for the greater non-disabled society.
After my first major diagnosis of Crohn’s disease, I found the information provided was sterile and terrifying. I began accessing groups and individuals with this diagnosis to talk to; I have often found the best information comes from first-person accounts.
I make it my priority to find these voices alongside research from official studies. There are many systemic flaws within many papers written on chronic conditions that don’t consider different ethnicities, multiple diagnoses, or variations of gender, as a few examples. Many studies can be really limited.
Larger Facebook forums are where I get the most trouble. A bit of oppression Olympics is not unheard of in the replies. There can be a lot of doubt thrust upon how sick you are when they have no idea what your experience has been like, entirely based upon an offhand comment.
I once said I can still eat nuts without flaring in a Crohn’s forum. Regardless of having cut out entire food groups, already being in A&E, and hospital for minor surgery, – it is nuts that meant I’m not that sick.
Borderline Personality Disorder (BPD) is a diagnosis with a lot of stigma. I was diagnosed with it in 2018 but years later I began questioning if I may be Autistic as well. I entered some spaces for Autistic people and I’ve witnessed quite a bit of mental health-related ableism (also known as sanism) in these groups against personality disorders.
I have seen people call BPDers abusers and been called an ‘abuser apologist’ for pointing out mental health ableism and misinformed opinions.
Continuing my research into Autism, I also felt like ADHD may be a legitimate comorbidity I have. The ADHD and Autism communities stand on shaky ground on a broader scale. The loud comment sections under videos about ADHD, on Tiktok specifically, can be very anti-autistic at times. This leaves people with dual-diagnosis feeling conflicted.
Internet text-based spaces often remove the capacity for nuanced conversations. I have been on the lookout for support groups since my last group in 2018. I follow and am friends with lots of people around my age online with chronic conditions, but I couldn’t seem to find a space for us to come together.
The spaces were often catered to older people, parents, and cis-straight people. I wondered where the space was for people like me.
I tested a few out. The local Crohn’s group is all older people, at least 60+, and I felt like things I was concerned about wouldn’t be understood in this group as a queer, multiply-disabled, twenty-something. I found a rare diseases group held on zoom in mid-2020. The group was parents of disabled children.
Some of the participants were disabled too, but we didn’t have the same priorities as I have no children. The setup was a free-for-all where I was often talked over or cut off by other members, which made me feel uncomfortable. As an undiagnosed Autistic, it was difficult for me to know how to join in.
My personal battle has been heavily affected by my struggles not traditionally ‘fitting’ any of my current diagnoses, so many people don’t recognise them. This was said to me in February 2021 as I appealed the decision made to remove all my disability benefits, even with 5 new official diagnoses, and no longer being in education or living independent of family.
It is estimated that one in four disabled people have two impairments, and one in ten have three or more impairments (Source) but the benefits system doesn’t take this into consideration when reviewing applications.
Questions about my ability to read and understand made no sense to me, as I enjoy reading books in my spare time but struggle to comprehend instructions (how to take my medications, understand important letters).
I’ve been told I have no problems preparing my own food because I can drive a car. I was constantly in pain due to the pressure amassed by using cutlery or pressing buttons, gripping my steering wheel is not the same.
No matter how many times I have gotten so lost on a journey in my past, or had numerous panic attacks and autistic meltdowns in public alone, it’s deemed I can carry out a journey according to assessors because I can drive to my GP surgery and the nearby town, both 15 minutes drive away in a place I have lived for 15+ years.
Luckily, one thing the pandemic brought me was this space I’d been looking for.
I stumbled upon Sick Sad Girls on Instagram but felt very nervous about joining their zoom meetings. I finally joined my first meeting in January 2021 on the Aussie server, and I now can’t imagine my week without my meetings with them.
My Aussie and UK buddies may not understand exactly my conditions, but they understand navigating this world as a young chronically ill, complex case, with conflicting disabilities in this society that values productivity over wellbeing. It helps there is a healthy mixture of queer and trans people too.
The most refreshing part is everyone gets uninterrupted time to share. If others have something to say, they can leave a message in the chat for you. But you are not disturbed in your time, and that felt so relieving to have a few minutes dedicated to being able to get everything off my chest and not be talked over.
Most disabled people I meet are in favour of self-diagnosis, understanding the systemic issues that are a barrier for people of marginalised identities. Many people I speak to believe all pain, all struggles, are real and equal to others.
There are people who don’t think their struggles are ‘worthy’ enough to talk about or gain support. I am sad for these people who feel they cannot claim their identity and create community because they lack a doctor’s note.
Accessibility for all is the goal and it will benefit everyone, non-disabled, disabled, and undiagnosed. No conditions should need to be met. It isn’t a competition and making it out to be one just further separates us and isolates many people who still have a lot of internalised ableism.
Image credit – Kaisersosa67 / Getty Images
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