by Anna Lyndsey
(Blogs are written by LightAware supporters in a personal capacity)
“Light-sensitive” is a peculiar term. It makes me think of delicate Victorian maidens, twirling parasols and preserving their pale and interesting complexions under large-brimmed hats. Or, there’s that other role model: tall, cadaverous, pointy-toothed, with a fondness for sleeping in coffins.
Sometimes the expression seems to convey merely mild and entirely manageable discomfort, as when other people cry, empathetically, “Oh yes, me too, I had terrible problems on the beach last summer – have you tried sunscreen?” It fails to communicate the excruciating burning/banging headache/erupting skin/[insert your own symptom here] which sufferers experience when exposed to the wrong type or amount of light; how it doesn’t go away when the exposure ends (the aftermath can last days); how each exposure makes us more sensitive to the next.
And most importantly, it doesn’t communicate the devastating social exclusion that results. Jobs lost because of workplace lighting. University courses abandoned, or simply inaccessible. Stations, trains, buses, planes all out of bounds – because of the way they’re lit. For some people, even driving their own cars becomes impossible. Everyday activities like shopping become distant remembered pleasures, places of worship as impenetrable as if they’d barred the doors.
In disability rights circles, there’s a lot of talk about the medical model of disability versus the social model. The medical model sees the disability as arising from the individual because something is wrong with them, and this can either be fixed (good) or can’t be (oh how sad). The social model states that people have impairments and differences, they do not have disabilities.
People only become disabled because of the barriers constructed by society. And these barriers can change over time. The apparently cuddly term “people with disabilities” is frowned upon because it continues to link the disability with the individual. The preferred term is “Disabled people” – capital D entirely intended – because it makes the point that the person has been disabled by something external to them.
So here’s my new term for people like me: light-disabled. I think it captures both the incapacitating nature of the condition, and the extent to which it can be mitigated AND IN SOME CASES COMPLETELY REMOVED by switching off or changing the lights.
In fact, we are the social model of disability in its purest form! Many of us, before the ban on incandescent bulbs, were not disabled at all. Now, the lighting environment around us has changed with the widespread adoption of LEDs, and we have become disabled, though our bodies and capabilities are unchanged.
What do people think? I’d be really interested to know. Please do join the debate on LightAware’s social media feeds. You can read more personal stories about light-disabled lives.