STEPHANIE HANLON: ‘My disability inspired me to stand in local elections’
THE first thing I remember is waking up, surrounded by my mother and a paramedic. I didn’t know what had happened: I was in pain and I couldn’t recognise anyone. This was my first tonic-clonic seizure and I was diagnosed with epilepsy at the age of 10. I am one of the thousands of people in Ireland with epilepsy.
Epilepsy is a neurological disorder that affects the brain and is characterised by recurring seizures. Seizures happen when normal brain activity is suddenly disrupted. They can include full or partial loss of consciousness, uncontrollable jerking, blank staring or temporary confusion. It is this sudden loss of control that contributes to the prejudice surrounding epilepsy.
Most seizures are either classified as generalized or focal. In August I was re-diagnosed with a mix of both types. The side effects of epilepsy and seizures are multiple and vary from person, but one of the biggest barriers faced by people with epilepsy (as with many people with disabilities) is the stigma.
More than three quarters of people are afraid to disclose their disability to an employer. Some 56% of people with epilepsy have said they were not comfortable telling their employer and work colleagues. Around 40,000 people in Ireland have epilepsy, and one-in-five people have a disability, yet it is still shrouded in silence.
Tuesday, March 26 is Purple Day, for International Epilepsy Awareness. But we need to do more than create awareness – we need to take action. Instead of thinking of people with disabilities as “inspiring” because they have overcome obstacles, we need to highlight the barriers we face in a disabling society. Exclusion is not a symptom of disability. Disability is something imposed on top of people’s natural impairments by the way we are unnecessarily isolated and excluded from full participation in society. This is a public issue, not a private trouble.
This is why I am standing for the local elections in May. I want to see change in our community. We have made leaps in LGBT rights, in women’s rights and have witnessed our community stand united together in the struggle for a society that treats everyone equally – people with disabilities must be part of and lead that conversation. The current government has overseen policies that impact the most vulnerable people in society – and profit off of their marginalisation. We need to make our voices hear and write our own history, or it will be written for us.
We are making gains with our campaign to tackle employment discrimination, fight for life-altering treatments for chronic conditions, and secure more accessible public transport and services in the community. 2019 is the year that Kilkenny can lead the way as a disability-friendly city! We will be hosting a public meeting on disability in Kilkenny on April 24, and all are welcome.
*If you would like to become involved, call 085 102 5160 or email firstname.lastname@example.org