Hidden Disability: a view from the inside
Children living with a brain injury may have to find ways of coping with hidden disabilities; long term challenges that are not immediately obvious to other people. Here, a young person living with a brain injury shares her thoughts.
"Have you ever wondered what it feels like to have a hidden disability? I am 15 years old and I would like to share my insight on what it feels like and how other people’s responses impact on me. I hope that by sharing my story I can inspire some deeper reflection on how to be sensitive and inclusive to those of us who have hidden disabilities.
"There is a huge range of hidden disabilities and those of us who have them don’t always feel comfortable shouting about them for the world to hear, which includes me. From mental health illnesses to lifelong physical injuries, from brain injuries to inescapable genetic disorders, we all have our own unique experience which makes it difficult to speak with one voice. However, we do share some common experience of navigating life in the face of difficult, embarrassing and sometimes traumatic times that can make us feel unworthy. It’s important to constantly challenge those negative feelings and to realise that we’re all beautiful in our own way and deserving of our place in this world. But we may need a helping hand or just a bit of kindness from those around us to recognise that sometimes.
"I’m not talking about those of us who are fortunate enough to have the support of family or guardians or carers who are often our champions and will fight our corners passionately. I’m referring to the wider circle of people who touch our lives regularly. We need more kindness, understanding and empathy from friends, colleagues or peers at school and the general public. The problem is that those people who do not know us well will be unaware of our hidden disability or how and when we acquired it and that’s not their fault. Words, facial expressions and actions matter and can make the difference between a good and a bad day for a person with a hidden disability.
"I have heard comments like this at school: ‘oh she’s a bit too clingy’, ‘why’s he so obsessed with that topic in geography?’, ‘he’s always falling over in sport lessons and he’s so clumsy all the time’ or something like ‘she never looks me in the eye and she’s my best friend’. Perhaps because I have my own hidden disability, I am more sensitive to both noticing and feeling upset by these flippant and sometimes insensitive observations. These comments can be hurtful and the reason for a behaviour may well be a hidden disability.
"Most people know the names of some hidden disabilities that are slightly more common than others and vaguely know what they are. However, there are many rarer invisible disabilities. I, for instance, am still recovering from Cerebellitis Ataxia which has resulted in a hidden disability due to the damage it caused to my brain. Cerebellitis Ataxia results from damage to the cerebellum which is the part of the brain which controls many physical and cognitive functions including motor skills, balance, coordination, working memory and processing speed.
"This condition changed my life and still impacts on me now; it was a traumatic experience, and I will always remember it. I was 6 years old and I had just started at a new school. I was just settling into the new building and timetable and then started getting headaches. Within just a few days I was admitted to hospital struggling to stand up or sit up, shaking uncontrollably, slurring my words and in a dreamlike state. I was subjected to a barrage of scans, tests and observations and the doctors never discovered what virus or infection had triggered the inflammation in my brain. When I was discharged from hospital, everything was hard. I felt so helpless and angry and had to relearn how to walk, tackle stairs, write and draw; everything was shaky and impossible to control. Life at school was frustrating as I had to be protected from the risk of injury in the playground: I couldn’t run around like everyone else in case I fell on the tarmac; I wasn’t allowed to use the stairs and at one point the school nurse wanted me kept safe in a wheelchair. My balance and control was all over the place and my little sister could easily push me over in an argument. It has taken me years of physio and dogged determination not to let this stop me doing the things I want to do. I have since relearned to cycle, I am a good swimmer and I have competed in triathlons. I have learnt to play the piano to Grade 3 but have since given up – my fingers just don’t go fast enough and, to be honest, it was never my passion. I enjoy competitive indoor rowing but I slip off the seat more easily than others and I play football for a local club.
"I still stumble, slip and trip more easily than others and some people at school roll their eyes and stare at me if I trip or bump into them. They have no idea what my story is. My handwriting speed is still affected and I use digital dictation and scribes when I need to for exams, which are vital to me. Most people don’t understand why I have extra time for assessments and perhaps some think it’s unfair because they do not know about my hidden disability. I find school and life more tiring than others and I can’t stay up late partying at sleepovers like some of my peers.
"These are differences that I try to accept but sometimes I just want to be like everyone else. You don’t need to know what someone’s hidden disability is, you just need to remember that it might be a possibility; be kind, be sensitive, be thoughtful, be patient. Knowing what I know, I will always try to be all of these."
