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What is an invisible disability?

Invisible disabilities are disabilities or long-term conditions which aren’t immediately apparent when looking at someone. The term includes a whole range of conditions and diagnoses such as long-term health conditions, learning difficulties and mental health conditions. However, it is important to note that not everyone who meets the official definition, would identify themselves as disabled.

There are also other terms used for invisible disabilities such as ‘hidden’ and ‘non-visible’; and for disabilities which are sometimes visible and sometime not, the term ‘dynamic’ can be used. However, language should be used carefully. For some, the term ‘hidden’ suggests that they have something to be ashamed of or that deserves to be hidden.

Disability discrimination

The Equality Act 2010 recognises disability as a protected characteristic detailing how reasonable adjustments must be made to remove the barriers society puts up for disabled people. However, many disabled people continue to report discrimination. This can be linked to ableism where disability is viewed through a deficit and medical lens. This means that disability is viewed as something ‘wrong’ with a person rather than it being society presenting barriers for certain people. This narrative can lead to assumptions that disabled people are less capable, or that they require help, rather than equitable access.

Why is this different for invisible disabilities?

Whilst all disabled people can experience discrimination, those with invisible disabilities can face specific challenges. Public perceptions often associate disability with visible indicators such as the use of a wheelchair. If a person doesn’t fit this expectation, their disability can be questioned. This can be either directly or through microaggressions such as comments like ‘you look fine’, which questions the need for adjustments or disapproval when using accessible services such as parking spots or toilets.  

65% of people with invisible disabilities feel disbelieved (Kelly & Mutebi, 2023). When they request support or disclose their condition, they are often asked for proof or to justify their requests. While there are contexts where evidence is required, such as medical evidence for a HR record or benefits application, these expectations extend into everyday situations. This can place an additional burden on the individual to explain or defend themselves in public or social settings. Research by Hendry et al. (2022) found that disabled people were so exhausted and stressed by this, that they would rather avoid society than run the risk of being challenged.

Even when people are believed, misunderstanding and judgement remain. For example, fluctuating conditions may be interpreted as inconsistency leading to assumptions someone is exaggerating or being unreliable. This is a direct reflection of a limited understanding of the lived reality of disability.

The impact

Repeated experiences of being questioned or misunderstood can have a cumulative impact and can result in the narrative from society becoming internalised. Internalised ableism is where disabled individuals begin to adopt the negative societal attitudes they have been exposed to and apply them to themselves. This can result in disabled people minimising their own needs, feeling underserving of support, doubting their own capabilities, and feeling guilty about needing or asking for support.

As a result, individuals may decide not to disclose their disability or seek the support and adjustments they need (and are entitled to). They may also mask, meaning they actively hide or manage their symptoms or difficulties in order to meet non-disabled expectations. Others may overcompensate, for example working longer hours or avoiding breaks, in an effort to demonstrate their worth and their place in society.

However, these approaches are not sustainable. Having to mask or overcompensate can lead to burnout and significantly impact physical and mental wellbeing. Depending on what a person’s disability is, it can also worsen their condition. For example, a person with M.E. not pacing at work could lead to a flare up of fatigue and pain. In education, students with invisible disabilities are more likely to achieve lower grades and drop out of their studies when they don’t have support for their disabilities. In employment, it can impact stress, productivity and staff turnover.

However, the impact is not just limited to individuals. When environments are not inclusive, organisations can lose access to a wider pool of skills and perspectives. There are also broader social and economic implications when people are prevented from fully participating.

What needs to happen next?

A key step is to reduce the expectation that people must continually prove their disability especially in informal or public contexts. This involves developing a culture where individuals are more readily believed when describing their needs or accessing support/facilities. Improved understanding is vital and increasing representation is one of the ways to do this. Having a wider range of disabled experiences visible in mainstream society, media and so on, alongside normalisation where disability is recognised as part of human diversity, will increase awareness and acceptance.

There are also practical ways in which education settings, workplaces, and social spaces can create more inclusive environments, such as:

• develop a culture of trust where disclosures are accepted without unnecessary challenge
• offer flexibility such as varied work patterns or assessment methods
• ensure processes for accessing support are clear and proportionate
• provide training to improve awareness and understanding
• have inclusion at the heart so that environments are designed to meet a range of needs from the start.

The evidence shows that people with invisible disabilities often face discrimination and stigma. However, despite the widespread and significant issues, there are examples of good practices across education, employment, and society more widely. Initiatives such as the sunflower lanyards and the increase of representation in the media, are helping to change the narrative and make these issues visible. There are also changes to the way in which support packages like Access to Work operate to make the burden of proof lower.

Nonetheless, there is still change needed and given that the majority of disabled people have invisible conditions, these issues are not marginal. Improving understanding and reducing unnecessary barriers is essential to creating a society where all people can fully participate in education, employment and wider society.