As someone who has mild cerebral palsy, autism and epilepsy, Ellie May Forrester’s disabilities are not always visible. She fears that, following the government’s recent review announcements, there will be an increase in persecution towards those who, like her, have an invisible disability.
In this personal story, Ellie explores what it means to live and work with invisible disabilities in the UK, reflecting on employment, welfare, and political rhetoric to show how misunderstanding, stigma, and policy failures continue to shape daily life.
As a person living with an invisible disability in the UK, I have two key concerns:
- The independent review into the increase in the diagnosis of autism, ADHD, and mental health.
- Timms review, which will be looking at the eligibility and criteria of PIP, which enables the disabled to have greater independence and higher living standards through employment.
Both these reviews have the potential to create a more hostile environment for those with invisible disabilities. According to the Papworth Trust, 20% of invisible disabled people have experienced harassment in public places. This coincides with an increase in media coverage of those who are not perceived as ‘disabled enough’. This has been heightened in the language used by political parties, who are using invisible disabilities as a football to score points and discredit the invisibly disabled.
How is an invisible disability defined?
An invisible disability (also referred to as a non-visible or hidden disability) is a physical, mental, or neurological condition that is not immediately apparent to others but can still limit or challenge a person’s movements, senses or activities.
The UK parliamentary research briefing from 2023 revealed the impact of having invisible disabilities,
Because these conditions are not obvious, individuals with invisible disabilities often face unique challenges, such as a lack of understanding, scepticism, and stigma from others who may not believe their condition is legitimate.
The current rhetoric around invisible disabilities is only going to increase stigma around a topic that is still frankly misunderstood. As one of 1 in 6 people in the UK who have invisible disabilities, my own lived experience has taught me that, as a society, we are truly failing in this area.
Invisible barriers: navigating employment with a hidden disability
One issue I have faced is that people assume you are more than capable. What is seen on the outside masks difficulties that lie beneath the surface, especially the challenges I have faced in employment. Seeing is believing, and at times, my journey into finding work, whether through a traditional job or self-employment, has proven, on countless occasions, to present difficulties simply because my disability cannot be seen.
After I finished my education, I was extremely upbeat about the prospect of getting a job. I felt that there would be greater knowledge and understanding of disabilities, given that the legislation was in place, including the Disability Discrimination Act (1995) and the Equality Act (2010). But I quickly realised that the understanding of invisible disabilities was extremely limited.
My first job illustrated this ignorance perfectly: I was working for a third-sector organisation through an employment scheme run by a job company. In the first few weeks, issues began to arise because of my cerebral palsy, which means I struggle to stand for long durations due to my joints becoming stiff. In this instance, adjustments were made, enabling me to sit down.
Further cracks began to appear when I was asked to copy down a list of product code numbers, and I wrote them incorrectly. The shop manager was fuming about it, and I left frustrated because I knew my learning difficulties had contributed to it due to my dyscalculia. This is a form of dyslexia that affects how a person sees numbers. For example, it includes difficulties with naming numbers, ordering, and comparing physical quantities.
As a result, I left the job because I felt uncomfortable. My employer did simply not understand – or have time for – my limitations. This had a devastating effect on my confidence.
Afterwards, it became clear to me that the employer did not seek information, either from me or elsewhere, regarding my disabilities, despite my disclosure. It is vital that a company does its due diligence and asks how it can support an employee and help them to thrive.
Equally, at the time, I was not as open about my disabilities for fear that an employer would not take me on. As stated by INvolve, this is not uncommon. For example, 37% 0f invisible disabled people do not declare their additional needs to employers. Its findings further revealed that autistic people would mask their difficulties in the workplace by 62% and 54% with mental health problems.
It hasn’t all been bad experiences; for instance, I gained a job at an organisation where I previously volunteered, and this connection really helped. Overall, it was a positive experience, although I was occasionally asked by other employees why I did not drive. This frustrated me as no one should have to justify decisions taken on medical grounds when it comes to personal life choices. This is yet another area where invisible disabled people get stigmatised due to a lack of understanding.
Disabilities are a broad spectrum; my cerebral palsy is mild, but it still impacts me due to having dyspraxia, and my epilepsy, which was diagnosed much later, which means I will never drive anyway.
Another sticking point for me has been Access to Work. I was supported by a disability employment organisation, which helped me gain access to another job, enabling me with a taxi, equipment adjustments and helping to provide adequate breaks, which helped me to thrive in the workplace.
One downside of Access to Work is that you have to renew the grant. I was shown how to apply and offered support so I could fill out the paperwork myself. This was all positive.
However, I have found myself, more than once, in a position where I have had to explain to an employer what access to work was about, highlighting a gap in knowledge and communication between employers and, charities and legislation.
From sitting on an uncomfortable chair that did not support my back and caused pain in my joints to struggling with time management due to my autism, the effects of this lack of communication and understanding have caused me real physical and mental stress, and undoubtedly others too.
As one employer made clear, Access to Work was meant nothing if I could not complete a task, failing to understand that the whole point was to give the support needed to complete that task.
In the end, I decided to work for myself because it was easier than dealing with the difficulties caused by many employers’ lack of understanding.
Proving the unseen: invisible disability and the PIP process
My experience with the Personal Independence Payment (PIP) scheme revealed the real flaws in the welfare system.
Despite having provided a raft of medical and educational documents explaining my disabilities. I ended up going through several hoops, which eventually led me to court twice. The scoring system for this benefit did not account for how disabilities can affect an individual’s life, both physically and mentally. They seem to have been written in a way that does not reflect the broad spectrum of disabilities.
One of the most disheartening things about the first time in court was facing a panel that included a medical professional who sat there silently and did not even acknowledge the evidence that been shown. The whole experience was stressful, and I was frustrated and upset, and I believe it was a contributing factor to my having an epileptic fit – something which I never experienced before, subsequently put on medication for, and resulted in us as a family having to take a different tack.
I received support from a local charitable organisation that helped us with the application form for PIP. Without the support of that group and an advocate to represent me, I was able to reclaim the benefit. There are some cases where disabled people do not even have these options and, in the end, choose not to go through the whole application process due to stress.
Stop the finger-pointing: invisible disability and the cost of misinformation
The Timms review into PIP and the independent review into the increase in ADHD, autism, and mental health will further muddy the waters when it comes to discussing disabilities. In the UK, we have a poor track record of talking about disability, especially in a political context.
For example, instead of blaming disabled people for an increase in spending on welfare, look at the factors that are driving it. My own experiences have shown me there needs to be a far greater emphasis on educating employers about disability to enable someone to work, and job centres and disability employment organisations need to work with disabled people so they’re not put in a job position which could fail.
By looking at people’s strengths and finding a fit that is right for that person to succeed in the workplace. Many disabled people work for smaller businesses, charities, and community interest companies, and the government needs to do more, such as reducing taxes on businesses like national insurance, to free up money that could be spent on more education about disability.
Also, there needs to be greater investment in identifying those who cheat the system, such as sick influencers who show people how to claim benefits they are not entitled to. This has been an issue since welfare came into place, and we need better tools, such as AI or a greater focus on fraud.
When it comes to the increase in diagnoses of autism, ADHD, and mental health, this review is going to create more of a finger-pointing environment. As someone who grew up with invisible disabilities being told I am ‘Not disabled enough’, or ‘You don’t sound disabled’, I feel it’s increasingly creating a hostile environment around the topic of disability. It is deeply disrespectful towards profoundly disabled people, and those with visible and invisible disabilities should be working together, not turning disability into a competition because it’s the way life is.
We do not choose our bodies or minds, but society decides how to treat us, which is often not equally on both sides of the disability spectrum.
If you live with an invisible disability — or support someone who does — your experiences matter. We invite you to share your story and join the conversation, helping to challenge stigma, broaden understanding, and ensure invisible disabilities are no longer ignored. Let us know in the comments box, on social media or contact us to share your personal story.