Our Chief Executive, Lesslie Young looks at how gaining employment is a consistent barrier for people living with epilepsy and how Epilepsy Scotland will continue to do everything we can to ensure people with epilepsy are never held back by their condition when trying to reach their full potential.
For a great variety of reasons there is much talk about the need for attitudinal change just now. In recognition of that I thought it would be interesting and useful to assess, albeit anecdotally, what attitudinal change has happened in respect of epilepsy.
Epilepsy Scotland recently celebrated 65 years of working with people, living in Scotland, with the condition. We have, over that period, worked with them, represented them and helped them to improve their lives.
We marked this milestone by looking back through our archives to see what the charity focussed on right at the beginning. What we found is worth bringing to your attention.
Epilepsy Scotland’s first annual report in 1954 said the charity “strives in every way possible to make it easier to enter open industry. By trying to influence employers, managers, foremen and workmates, every effort is made to bring about better understanding and change of attitude.”
This reference to the need to see a change in attitude is a direct challenge to the longstanding stigma associated with epilepsy and the people who live with the condition especially when trying to access employment.
In 1955, the Chief Inspector of Factories said he had “no experience of accidents caused by epilepsy but knew there was widespread fear of what might happen.”
In an attempt to address at least some of the existing barriers, Epilepsy Scotland established ‘sheltered workshops’ to train and employ people with epilepsy.
Named ‘Seaborn Industries’, people worked to produce knitwear, machined textiles, upholstery, and electrical goods. At the time, it was revolutionary. It offered secure employment to a marginalised and often discriminated against group.
In Scotland, 34% of people with epilepsy are employed compared to the general disability average of 45%. Additionally, people with epilepsy who are employed earn 11.8% less on average than their non-disabled colleagues.
Despite significant improvements in the awareness of epilepsy and legislation over the last 65 years, many people with epilepsy still struggle to find and retain employment.
One recent YouGov poll found over a quarter of UK employees would be concerned about working with someone who has epilepsy. Many employers continue to be fearful about safety regarding people with epilepsy in the workplace.
The Equality Act was hailed as the end of discrimination in all forms. However, ten years after it was introduced, there remains a lot of work to be done.
There seems to be a real disconnect between what has been legislated and how it is put into practice. The result? The same attitudinal problems people with epilepsy experienced 65 years ago still exist.
It is our view, this fear regarding safety and other potential barriers is borne out of a real lack of understanding of the condition.
Historically, employers may have cited a lack of training, advice and support offered to them as reasons not to employ. However, this can no longer be a legitimate barrier to employing people with epilepsy.
Has the Equality Act, and a lack of knowledge about disabilities like epilepsy, created an unnecessary and/or irrational fear in employers about putting a foot wrong and wanting to avoid the risk of an expensive tribunal?
Do employers feel reasonable adjustments or additional support, even if temporary, are too expensive?
Epilepsy Scotland continues to provide answers
Like we did 65 years ago, we continue to offer some solutions.
We produced the only epilepsy specific Occupational Health Guide in 2010. This has been requested by employers from various industries and has supported them in making sure they are properly supporting their colleagues with epilepsy.
We are due to publish a revised and updated version later this year to ensure employers feel supported in employing those with epilepsy.
We have also developed our Epilepsy Friendly Award (EFA). The EFA recognises businesses who have made adjustments to ensure they are accessible to people with epilepsy and have trained their staff to respond appropriately to seizures.
Of course, not everyone with the diagnosis of epilepsy has seizures thanks to medication. There is a need for education around the impact medication may have in some people.
Our training department supports businesses by training their staff in the lead up to their accreditation.
Occupational Health Guide
It cannot be right that In Scotland, 34% of people with epilepsy are employed compared to the general disability average of 45%.
It cannot be right that people with epilepsy who are employed earn 11.8% less on average than their non-disabled colleagues.
It cannot be right that 65 years after a problem was identified people with epilepsy living in Scotland are still experiencing the same discrimination.
We have plans to build on the work we have done so far. However, if we are to see true attitudinal change, improved employment prospects and greater economic freedom for those living with epilepsy, we need you to work with us.
Order a copy of the Occupational Health Guide. Contact Nicola Milne by emailing firstname.lastname@example.org to start the process of accreditation for the Epilepsy Friendly Award, or simply call us.
Our dedicated team at Epilepsy Scotland will continue to do everything we can to ensure people with epilepsy are never held back by their condition when trying to reach their full potential.