Read this message from your Disabled Students' Liberation Chair - Devan Chauhan, and learn about the theme of this year's Disability History Month.
Content note: Suicide, Disability Discrimination
This UK Disability History Month (DHM) is focused on disability in childhood and young people.
I would like to describe my experience now and during childhood as a series of fights. I use the term fight in reference to the challenges and struggles disabled people have to go through every single day. The subjects covered are reductive and do not encompass the whole life of all disabled people, this merely reflects the challenges I personally have and still go through, aiming to make the reader think about other disabled people having their own stories and challenges that make them the individuals they are today.
The first fight in my life is one that I still experience to this day. Society. The battle of never being able to fit in; floating between different groups of people that are close enough to be perceived as friends by onlookers but not close enough to be invited round each other’s houses. Going through episodes of bullying, alienation, and isolation. Living a life that no one else could even begin to comprehend, no matter how many times they try. Then diagnosis comes along and society all of the sudden gets a whole lot harder, the weight you thought would get lighter gets heavier. People notice you going into a different exam room, getting extra time, talking to teachers after class. The social divide just grows and grows exponentially and as much as EDI (Equity, Diversity and Inclusion) exists, the basic understanding and sheer humanity in some people isn’t there.
The second fight. The mental fight. From an early age I have been in ‘the system’ under the dreaded CAMHS. Referred for a high risk to myself after I mentally snapped and broke after years of trauma, abuse, and multiple attempts on my own life. Daily contact from the crisis team for 3 weeks combined with trauma therapy, regular meetings with my key worker and being ‘the kid that didn’t wear a tie’ in school. It was a lot. Then came the questions about being disabled without a formal diagnosis. Suddenly my mental fight had a whole new perspective, another way for me to question and doubt my own struggles. I am currently going through this process for the second time questioning my whole life, thinking do I really have autism and ADHD or am I somehow conforming to the videos and information I learn about these conditions and subconsciously faking my struggle like some extremely twisted false condition. The feeling that I am broken having to use tools and adjustments just to function as a ‘normal person in society’ not knowing the difference between my true self and my condition breaking down every aspect of my identity no matter how hard I try; I can never find the answer. What is my identity? There are people out there like me that experience episodes of Gender dysphoria and fluctuating sexuality without identifying as queer or trans, this is very common in neurodivergent individuals not exclusive to the queer community. Feeling so detached from reality, your own body doesn’t feel like it is yours, having to literally pull different parts of yourself together.
The third fight. The system. Being undiagnosed is hard enough, but all my fantasized preconceptions about being able to access support with a formal diagnosis went away very quickly. Having to justify and prove your disability and struggle to every single person you meet for them to think they have the right to decide if you are ‘disabled enough’. Even to this day I am questioned about the very support that I receive from the institutions that are supposed to be helping me get my education. Yes, my reasonable adjustments are ‘convenient’. Convenience is a compromise between the additional struggles and issues disabled people face in society and the systems we try to access that are only ever made for someone who is ‘normal’. It is far too commonplace for disability and accessibility to be an afterthought and not considered as an integral necessity for a large population of people.
The fourth and Final fight is diagnosis. For many people more abled, diagnosis is viewed as the core proof and evidence of difficulties people experience. People assume that those not formally diagnosed do not suffer difficulties and those who self-diagnoses/identify with conditions are merely faking their problems or are misinformed by ‘the internet’. In some rare cases this may be true, those who understand the safeguarding differentials of others may be familiar with the term Fabricated or Induced illnesses (FII) and hypochondria. FII is defined as a rare form of child abuse where a parent or carer exaggerates or deliberately causes symptoms of illness in the child. Hypochondria is an anxiety disorder surrounding health and fears of becoming seriously ill. Apart from examples above, self-diagnosis is becoming recognised by more and more people – Especially those with neurological conditions and neurodivergences. Self-diagnosis can be a valid form of acceptance for many, either until they get assessed formally or whatever they are comfortable with. Currently thousands of people are undiagnosed waiting months or even years for someone to tell them whether or not they have a condition that affects the way they function on a daily basis without even realising once diagnosed there is a whole other journey ahead.
For those still reading, thank you. This is a very vulnerable piece about my life as a disabled person, there are many positives I look to in my life; however I do not attribute these to my disabilities. If you feel uncomfortable or found this hard, remember that feeling. It is okay to feel uncomfortable, to feel pain, to suffer, to remember. It is also okay to be happy, make the most of what you have and embrace life to its fullest.
I encourage everyone to take away at least something from this, go and learn. Understand what it really means to provide accessibility, find out how you can support those around you, and widen your horizons on what disability is.
GSU Disabled Students’ Liberation Network Chair