A Daily Performance!

                                                

I am a neurodivergent tutor, businesswoman, performer and writer. I am very successful in all of these areas, even winning awards, yet I mask my very real struggles every day, leading to disbelief and gaslighting. So what are the realities of a ‘hidden disability’ for this ‘Superwoman’?

 

I know some of you won’t believe me, so maybe I am wasting my ink, but I struggle everyday with some aspect or other of daily life, and what you see in articles, professional life and on social media is only the tip of the iceberg. Yes, I appear to be quite annoyingly successful at everything I do. But the next time you call a person like me ‘Superwoman’, imagine that I am also battling with Kryptonite on a daily basis.

 

In 2018, I was diagnosed with Autism Spectrum ‘disorder’. I put that in inverted commas, because some of the time it genuinely seems like a superpower to me, due to my phenomenal eidetic memory (memory for text), and photographic memory (visual recall) amongst other skills. I’m also waiting for my ADHD diagnosis to be official, and the super traits there include extraordinary hyperfocus and energy bursts with an overactive drive to succeed at everything. It has allowed me to rebuild my whole life, rising from the ashes of serious setbacks to create a successful business, write four books, perform and act in professional productions and find personal happiness. Alongside that though, I frequently crash and burn, suffer from body dysmorphia, think people don’t like me at least 5 times a day, find conversation exhausting and tricky, get in a muddle with appointments, forget I’m cooking a meal in the middle of cooking it and set fire to my food, self-criticise to the nth degree, make impulsive decisions, and I can’t keep still for more than a few minutes without getting restless. There are so many complexities in my brain that I can’t even begin to explain them all, and it was a lot worse when I was younger, but sometimes it’s very tiring being me, and even then, I can’t switch off. And the worst thing about my tricksy brain is that it can be very hard to silence the voices shouting at me that I don’t deserve the good things and at any minute I will be exposed as an imposter. 

 

One major problem I face is being disbelieved. There’s a lot going on under the surface, but like a swan, I am frantically paddling away unseen to present the serenity you see. I experienced this kind of discrimination recently when I re-applied for the blue parking badge I have had since 2019. As part of the new hidden disability criteria, I was encouraged and supported by a clinical psychologist to apply and to my own surprise I was awarded the blue badge. Hidden disabilities can manifest in the form of major ‘Meltdowns’ and ‘shutdowns’ when the person is under severe stress. I have experienced this simply doing a routine shop, where I can lose the ability to process verbal instructions, wander into traffic and lose all sense of self and my physical space. It can look like a toddler tantrum, which is devastating, but I have often abandoned plans and journeys because it is just too stressful not having the certainty of where to put my car, let alone planning journeys to new places when you have literally no sense of direction. I can’t really explain having severe anxiety about a journey I have never done before, but since having a disabled badge I have had a lot more freedom and psychological peace. Sadly, I have often been challenged about it – ‘But you can walk!’ and ‘what’s your disability then?’ I mean, I once flippantly told a stranger in a supermarket car park I was blind – I know, inappropriate humour; but why did they feel the need to challenge it? But I have relied on it for 7 years, and when I re-applied this Summer, with the same evidence on my lifelong condition, 3 supporting letters, and a full report, I was refused it on the grounds of not having any ‘new’ evidence – on a lifelong condition. I don’t have the kind of condition I see a therapist on a regular basis, and though I was in fact waiting for an appointment, it was not within the council’s timeframe, so I was told I had to have an independent assessment. Assessments for people who find physical walking difficult are seen in person apparently. But for hidden conditions, I received an email stating I would get a letter which would arrange a suitable appointment to be assessed and that the independent assessors are fully qualified, fair and robust. But here is what happened in reality:

 

I received no letter or contact, and I was in the middle of tutoring online when I had a phone call from the assessor. She said she could re-arrange but that she wasn’t allowed to tell me when she was calling! She spoke to me for 10 minutes, where I related all the most severe challenges I had. A week later, I received an email stating my application was refused as my difficulties were ‘mild’. 

 

Now, I don’t know what you think about that, but that’s not what I would call robust or fair. I am not sure how a chat on the phone for 10 minutes can contradict a full assessment with a clinical psychologist qualified in diagnosing hidden conditions, or how lifelong conditions can be magically ‘disappeared’? The criteria is based on effects of the disability whilst walking. But this person had never travelled with me or seen me walking. I also found out that some of the confidential medical information I sent has been lost by the council. They say it was probably lost in the post, but given I posted 2 items that day and 6 that week which all reached their destinations, what conclusion do you draw? It is fortunate that I do now have a proper appointment and the chance to appeal this decision, but I have serious concerns that this reflects the very real targeting of people with disabilities to make cuts. People with disabilities are soft targets, as many are so vulnerable they find it hard to challenge decisions or fight back for their rights and needs. There is an insidious erosion of disability support and access going on right now, creeping into every area of the workplace and daily living, including the arts.

 

I am seeing this happening everywhere and I find it alarming and a disgrace. The safety net that allows up to 12 million people to be independent and contribute to society is being snatched away as the UK Government prepares to cut disability benefits by £5 billion per year. This means that ‘up to 12 million people could lose between £4,200 and £6,300 annually. For many, that’s not a cut. That’s survival pulled out from under them!’ (source: Guilliano Levato, Theatre People, Theatre Matters, 2025) A recent example I know of personally is what happened to a fellow performer and business owner, who ran a company supplying training for accessible performances. They have Tourette’s and need a support worker to help them deliver their work, but cuts in Access to Work now means they cannot continue to run their business effectively. In cases like this, instead of being useful contributors to the workforce, maybe many now have to rely on further benefits to support them, which would cost more in the long run? This type of cut, based on statistics and spreadsheets, is making people with all sorts of disabilities become more ‘disabled’ by society, their rights to access stripped away. But it also has dire consequences for society. There will be voices silenced, plays not produced, books not written, jobs not done, inventions not invented because of these decisions. There will be more poverty, mental health crises and even suicides because of this decision to try to make some of the most vulnerable but necessary members of the population vanish conveniently out of sight. 

 

The article I read recently by Guilliano Levato expressed anger that the politicians who make those decisions do not cut their own extravagant allowances. He accuses them of ‘dining out on Fois Gras and champagne’. If you think this is a myth and a bitter working-class accusation, I can assure you, having been involved in many political dinners and events in the early 2000’s that this is no exaggeration: Fois Gras, champagne, film premieres and limousines were definitely on the menu and I’m sure not much has changed. 

 

For those of us with hidden disabilities, simply living can be an exhausting daily performance, in a different way to physical or more obvious disabilities, but still challenging. Our society will function better with diversity and kindness. We must always pause to consider that what we see is not necessarily the full picture, and strive to understand others’ experiences of the world, not invalidate and dismiss them. Some people appear to be functioning just fine, but in reality, they need support to allow them access to a level playing field. Most importantly, understand that the benefits that are being taken away are not charity and they are not actually ‘benefits’ at all. They are tools to allow equality for all.