RAiISE-ing Our Voice – Siena

RAiISE-ing Our Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with an invisible illness. 

Society still has a long way to go before the needs of people with invisible disabilities are recognised and met. Recently, there has been a lot of public ridicule and criticism about the University of Manchester’s Students Union’s decision to ban clapping and cheering. One journalist, referred to the decision as “bonkers” and as yet another ridiculous example of the snowflake generation’s emotional fragility and lack of resilience. On Twitter, people have been expressing disbelief and mocking the decision. One person felt the decision to ban clapping was so bizarre, that she asked what the world has come to. Others suggested people with sensory issues and anxiety simply stay home. The mostly negative response to the clapping ban really personifies the way most of our society still perceive, respond to and treat people with invisible disabilities.

 

I have several invisible disabilities. I am autistic, dyslexic and dyspraxic. I also have anxiety, hypermobility and ADHD. These invisible disabilities affect me on a daily basis, especially my autism and anxiety. A large part of being autistic is having a sensory processing disorder. In my case, I am very sensitive to noise, lights, smells and touch. This makes venturing out into the world very stressful and challenging. Even the thought of leaving the safety of my home causes me anticipatory anxiety.

 

On an ordinary day, as I head out to secondary school, my senses are assaulted as soon as I open my front door. The sounds of cars, motorcycles and construction work reverberate with a deafening sound. On the tube, people push past me; their perfumes, shaving cream, scented lotions, floral deodorants and morning coffee mixing into a sickly, overwhelming smell that makes me queasy. I begin to feel faint. As people inadvertently brush past me, the place I am touched begins to throb. Before long, my whole body is throbbing.  I try not to focus on the pulsating pain… and the noxious smells….and the cacophony of noise….. and the lights glaring at me.

 

As I walk towards school, I try to shut out the world. I try to shut out the shrieking sirens, the toxic fumes and smell of rotting rubbish patiently waiting on the sidewalk for collection. I struggle to carry my school bag as it gets heavier and heavier with each step. My vision begins to blur.  I focus on walking without tripping. I listen to soothing music as a distraction. I take deep breaths. I think of cuddling my dog. Yet, my heart is racing and my anxiety levels are rising. It has only been half an hour since I ventured out. School has not even begun. I still have the whole day in front of me. Yet, I am already worn down. Exhausted.

 

At school, my dyslexia will emerge. I will have to reread passages over and over. As the other students dive into their maths problems, I will have to substitute all “bs” with an X and all “ds” with a Y, so that I don’t confuse the two. The gleaming, shiny white board will be blinding, making reading the black writing on the board impossible.  The flickering fluorescent lights looming above me will mock me with their menacing hum. The hum and students chatting, will drown out the teacher’s voice. I will focus on trying to pick out her voice from the cluster of noise. If she calls my name, I will not hear her and she will think I was not paying attention. I am only fifteen minutes into my first lesson. I still have the rest of the school day in front of me. Yet, I am already worn down. Exhausted.

 

The school day will be a series of battles, some which I will win, but most I will lose. With each hour, I will become more and more and more mentally and physically exhausted. Eventually, I will short circuit, overloaded by an assault of the senses and worn down by my disabilties. If I am lucky, my shut down will coincide with my lunch break. I will spend my lunch hour in the sanctuary of the school library; recovering and recharging.

 

At the end of the day I will go to PE. This is when my dyspraxia will emerge. My limbs will have a life of their own, refusing to cooperate. I will be unable to hit the ball, to catch the ball or to throw the ball in the right direction. I will be unable to run and to walk without tripping or bumping into something. I will be the last to be picked for the team and the first to be out. I will be embarrassed and humiliated. I will have to smile and pretend I don’t mind. I will become anxious about having to travel back home; overwhelmed at the thought of the walk to the tube station and having to squeeze onto the crowded train. I will feel defeated, worn down and exhausted. I will struggle to fight back the tears as I coax myself to endure the odyssey back home. I will try to summon up the armour I will need to protect myself from the pain, from the smells, from the noise, from the lights, from the chaos of people that will engulf me. I will feel overwhelmed and defeated.

 

Since my disabilities are invisible and I suffer in silence, most people do not understand the obstacles I face on a daily and hourly basis. To me, stepping out into the world is a Herculean task that takes courage and resolve. Instead of capturing or slaying mythical beasts, I have to defeat a sensory overload of noise, lights, smells and touch. A never-ending battle I know I cannot win. When shops have Autism Hour or cinemas have an autism-friendly viewing or a conference offers a safe space (a space set aside for disabled people and others who needed a quiet area), the world becomes more accessible and inclusive for people like me. The world becomes less hostile and less scary. These concessions may seem ridiculous and absurd to others, but to me, and people like me, they are life changing.

 

If I had a serious peanut allergy, people would not mock a school’s decision to ban peanut butter. If I were in a wheelchair, people would not accuse a school of being “bonkers” for installing ramps. Banning clapping and cheering is no different. The Students’ Union recognised that there are University of Manchester students who suffer from anxiety and students who have sensory processing disorders who were unable to attend university debates and talks. Their conscientious decision acknowledges that some students have invisible disabilities that prevent them from fully engaging in student life. By banning clapping and cheering, they have made the university more inclusive and accessible.

 

Societies lack of understanding and support of the autistic community has real life consequences. In addition to our sensory processing issues and anxiety, many of us are mistreated and abused. In a 2017 study by Ditch the Label, 70% of autistic students reported being bullied. I have had to leave one primary school and two secondary schools due to severe bullying. The significant challenges we face from living in a world that is not designed for us has a negative effect on our mental health. According to the National Autistic Society, more than 70% of autistic people will suffer from mental health issues at some point in their life. As a consequence, the suicide rates of autistic people are alarmingly high. According to the NHS, people with autism are almost 8 times more likely to die by suicide. In a 2014 Coventry University study, 66% of people newly diagnosed with autism reported contemplating suicide and 35% planned or attempted to take their life.

 

So as broadcaster Piers Morgan tweets that “Britain’s losing its mind” and that the ban on clapping is giving him anxiety and as journalist Julia Hartley-Brewer and her camera crew barge into a safe space to mock the people seeking refuge from the bustling conference, I and many others are grateful for the kindness and compassion shown by the University of Manchester’s Students’ Union. I wish the rest of the world was as inclusive and understanding of people with invisible disabilities.

 

 

Siena Castellon is a sixteen-year old nationally recognised award-winning autism and neurodiversity advocate. In addition to supporting and mentoring young people with learning differences and autistic young people through her website – http://www.qlmentoring.com, Siena is also passionate about tackling bullying. She is currently serving on the Diana Award National Anti-bullying Youth Board, which has given her a national platform on which to share her bullying experience and shine a light on disability-related bullying.

 

 

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