I have Juvenile Myoclonic Epilepsy, which is photosensitive, and therefore triggered by fluorescent lighting. If the incandescent light bulb is phased out, I and all other people with epilepsy, will live in a world where the ability to earn a living is denied to us.

How do I go to work in a place that cannot provide me with lighting that does not trigger seizures, that does not force migraines upon me (my indicator of a potential seizure occurring)? Not everyone who has epilepsy has medication that fully controls seizures.

Will we become even more trapped inside our homes? Already shopping malls, movie theatres and restaurants are filled with fluorescent lighting, denying us the “privileges” that most people take for granted.

Must we walk around wearing glare reducing sunglasses in our own homes so that, once incandescent light bulbs are phased out, we do not have a seizure there as well?

At least prior to this we could make our own home a sanctuary away from the fluorescent lights that trigger seizures. Are we to be even more isolated than before?

Was anyone in the epilepsy community consulted in regards to this, or are the lives of millions of Australians not considered relevant? This will shatter our world.

Cannot incandescent light bulbs be provided for those who have a medical need for them? Perhaps the workplace could use natural lighting to help?

Or will the government now start subsidising:

  • The increased visits to neurologists (not covered by private health insurance)
  • Increased amounts of people with photosensitive epilepsy unable to find work due to an inability to find a workplace that does not use fluorescent lighting
  • An inability to attend and fully participate at pre-school, school, TAFE and university due to the classrooms only using fluorescent lighting (the lighting may trigger seizures including pre-ictal, absences and convulsions)
  • Increased medication and its associated costs to control the epilepsy due to an inability to escape a trigger factor (fluorescent lighting)
  • Further research to find a genetic cure for the various types of epilepsy in a society that apparently refuses to assist those who live daily with this neurological disorder?

I hope that at least one of the parties with representatives in the Senate and/or Lower House will be honourable enough to at least acknowledge that they received this letter. My dream however is that Australian politicians will stand up and pull epilepsy out of the shadows, rather than forcing us to hide in the dark away from the fluorescent lights.

Get more Crikey, for less

It’s more than a newsletter. It’s where readers expect more – fearless journalism from a truly independent perspective. We don’t pander to anyone’s party biases. We question everything, explore the uncomfortable and dig deeper.

Join us this week for 50% off a year of Crikey.

Peter Fray
Peter Fray
Editor-in-chief of Crikey
50% off