This year, the theme of Disability History Month is Disability Livelihood and Employment – a particularly topical theme for people with non-visible disabilities. Although it’s important to recognise that not every disabled person is able to work and should never be forced into inaccessible roles, in recent years there has been a real push to reduce the disability employment gap.
Efforts are being made to increase the number of disabled people in paid work and it’s been heartening to see an increased recognition of the structural and societal barriers that exist… but there is still very little conversation about the health-related barriers that can prevent people who want to work from finding suitable roles. So, what are these barriers, and what should we know about them?
Research by the charity Astriid has identified the top ten health-related barriers to work faced by people with long-term health conditions. Although the study did not specifically target people with non-visible disabilities, it’s very interesting to see that of the ten barriers most frequently cited, they could all be broadly considered as less-visible symptoms. In order, they are…
- Fatigue and limited energy. Many people with non-visible conditions live with an energy impairment, meaning they must carefully plan and pace each day to avoid a flare-up of symptoms. Their levels of fatigue may make it difficult to simply undertake the everyday tasks of living such as eating and dressing, let alone extend to the duties of traditional employment.
- Fluctuating capacity. Similarly to the above, people’s symptoms can vary day-to-day and be impossible to predict. This uncertainty can make it difficult for people to estimate what type of work and how much work is realistic for them, and how to find understanding employers who recognise that some of their days look very different to others.
- Cognitive fatigue. People with energy limiting conditions like ME/CFS and Fibromyalgia don’t just experience physical fatigue – cognitive fatigue can be a life-changing symptom too. Difficulties with brain fog and short-term memory can make it more difficult for people to keep organised at work, meaning that extra time and energy may be required to keep on top of projects and commitments. Sometimes, cognitive fatigue can also have an impact on the way people communicate with colleagues, making phone calls and meetings much more difficult.
- 'Payback’ or post-exertional malaise. When a person has a limited amount of energy per day, it’s very easy to accidentally overdo it – especially in the world of work, where people often feel pressure to push themselves to meet a certain deadline or target. However, this entails ‘borrowing’ energy from future days, leading to a worsening of symptoms known as ‘payback’ or post-exertional malaise. Payback is more than tiredness or exhaustion – it’s a unique sensation in itself that can be utterly disabling and, depending on the severity of it, remove people’s ability to work for days or weeks at a time.
- Pain. Chronic and acute pain can be extremely disabling and distressing, and yet can be very difficult for other people to see unless they know what to look for. Even with reasonable adjustments in place, people’s experiences of pain can make it difficult or impossible to undertake the routine tasks of their working day – regardless of whether these tasks are physical or cognitive in nature.
- Dizziness. Dizziness is another symptom of many chronic illnesses and non-visible disabilities that can be trivialised by others. Regardless of whether a person is working from home or within an in-person workplace, many people can feel stigma or shame about having to manage dizzy spells or vertigo attacks. The effects of these incidents expand far beyond just the moment of the attack – people often have to rest and be especially careful with their condition management afterwards which may impact their ability to work.
- Sensory sensitivity. This barrier not only impacts people with long-term health conditions, but also people who are neurodivergent. Being sensitive to noise, light, smell, and other sensory input can make it much more difficult for somebody to complete their working tasks while taking care of themselves. Sensory sensitivity is one of the key reasons why many people with long-term health conditions require remote working as a reasonable adjustment, as it can be much easier to mitigate the impact of this in their own environment which they have much more control over.
- Nausea. Nausea is a symptom of many chronic illnesses and long-term health conditions. Many people report feeling particularly embarrassed or ashamed about this element of their condition, and managing the impact of it can take time away from their work or make it more difficult to follow a set routine. One adjustment that can be helpful for people impacted by nausea is allowing for flexible start and finish times, so people have more control over the structure of each working day.
- Continence issues. Similarly to the above, many people fear having to manage continence issues, such as Crohn’s Disease or IBS, in a physical place of work where they are around other people. Home-working and flexible hours are often much preferred by people impacted by this symptom, and even then, it can be difficult to manage the toll of this alongside typical working life. It’s essential that people with continence issues, if they disclose them, are treated with respect and compassion by the people around them.
- Mental distress. Although this research focussed on physical health conditions, many people have shared that mental distress is an important part of their lived experiences when it comes to employment. Living with a long-term condition in an ableist world can be difficult and lonely, and can take a real toll on people’s self-esteem which then goes on to impact their employment prospects. In conversations about health-related barriers, it’s important that employers and policymakers are aware of the mental load that comes with physical health conditions too.
Tackling health-related barriers to work
It’s vital that each person facing health-related barriers to work is treated as an individual and that we do not try to apply a one-size-fits-all logic to this issue. However, in the broadest sense, the following actions may lead to positive change...
- Improved training for managers and employers. Often, disability equality training lacks a specific focus on the unique challenges of non-visible disabilities and energy limiting conditions. Hidden Disabilities provides training and webinars to help facilitate safe, supportive and accessible environments – including in the workplace.
- Providing autonomy over disability disclosure. Some people may prefer to be open and vocal about their condition, while others may wish to communicate that they have non-visible access needs without going into the details of their medical history. Recognising and implementing the Sunflower Lanyard can assist people in both of these situations, providing an easy way for managers and colleagues to identify that the wearer may require additional support, compassion, or adjustments while doing their job.
- Consultation with lived experience experts. Disability and employment is an increasingly topical conversation in the UK, and we are likely to see huge reforms to the system over the coming years. In every decision-making process, it is imperative that policymakers are consulting with lived experience experts. These are the people who have first-hand knowledge of the issues impacting the community and can identify what exactly needs to change to create a system that is more mindful and equitable for all.