Finding my voice to drive change

What is a hidden disability?

In the work that I do as part of the WDES team, I find myself often asked the question 'What is a hidden disability?'. In my view, this is a term that covers a wide range of long-term conditions, such as neuro-diversity, mental health, sensory impairments, and, as my own lived experience would testify, communication related conditions.

Understanding our self-identity

When we consider who we are as individuals, we might consider how our personal identities are formed by our values, behaviour, relationships, and appearance, as well as any interests that we might pursue. But I wonder how many of us also consider how our identities are also shaped by our voices? 

The ability to speak and verbally communicate is probably something we usually take for granted, apart perhaps from those occasions when we might have a sore throat or cold and ‘lose our voice’. For me, I became aware at a young age that our voices are an integral part of our individual identities.

Lived experience with a vocal impairment

When I was 18 months old, I underwent surgery for a heart condition. Although the surgery corrected my heart, the operation damaged my left vocal chord – leaving it paralysed. Despite further vocal surgery, I have always spoken with an impaired voice, which might be described as hoarse (although people have sadly said much worse to me). The thing about a vocal or communication impairment is that you can’t see it, it is hidden or invisible. If you were to meet me would you say to yourself, that guy looks fine, I wouldn’t think he self-identifies as being disabled.

I am a strong advocate for the social model of disability eg, the way in which the world and society has been structured creates barriers that have an adverse impact on people with a disability or long-term condition. My condition has, at times, impacted negatively on my lived experiences. For example, I experienced a lot of bullying at school (in inner city London) because I spoke ‘differently’. These negative experiences impacted on my mental health and self-confidence, led me to choosing to leave education at 16, and impacted on my career path – I struggled to get into employment.

Moving into the world of employment

As I got older I gained self-appreciation of the challenges that I had gone through and I became more curious about what career I could follow, thinking about what sort of roles I could consider that would give me an opportunity to use my lived experiences and abilities.

After some small steps up the career ladder, in 2005 I gained employment at the Cabinet Office. I worked in a team with responsibility for producing a diversity strategy for the Civil Service. Whilst I gained a lot of personal development in that role, more importantly, I realised that working in diversity and inclusion gave me the opportunity I was seeking. I felt able to make a contribution to building a society in which we are all valued for our differences and lived experiences.

In the intervening years I continued to work in equality related organisations, such as the Business Disability Forum. I then spent 6 years at Health Education England – half of that time working as the organisation’s diversity and inclusion lead. Now I find myself working on the delivery of the WDES, focusing on a range of work that aims to improve the career and working experiences of Disabled staff in the NHS.

Be an advocate for inclusion

Whilst I appreciate that I have a hidden disability, and generally feel accepted by society, I know that there are many others who continue to experience prejudice or discrimination and fear stigma because of a hidden disability.

Although I may have an impaired voice, I am determined that will not stop me from being a vocal advocate for the NHS to continue to further its commitment to disability equality.

I would encourage you to think about what else you can do to advance workplace and societal inclusion for people with hidden disabilities. If you work in a trust or national healthcare organisation look for opportunities to contribute to your organisation’s WDES action plan. Does the plan have any clear actions about supporting staff with hidden disabilities?

Further information

I would encourage employers to consider signing up to the Communication Access Symbol, which was introduced in November 2020 and aims to improve support for people with communication related conditions

Learn more about embedding the WDES and access our resources that support disability in the workplace.