It’s Blogging Against Disablism Day. It’s also Multiple Sclerosis Week and the MS Society have published a report called Fighting Back – ordinary people battling the everyday effects of MS on attitudes to MS and disability in general.
Some of the statistics:
- One in five (21%) British adults surveyed think disabled people need to accept they can’t have the same opportunities in life
- one in four (26%) Britons think bars and nightclubs are not places for people with wheelchairs
- 42% of people with MS admit to being concerned about telling their employer about their condition in the current economic climate
- Over half (56%) of people with MS find it harder to socialise since their diagnosis, with around two-thirds (67%) saying their MS has hampered their ability to enjoy everyday social activities like drinking, eating out or shopping
The report concludes
MS is unpredictable and, perhaps largely because of this, widely misunderstood. It is different for everyone, and everyone responds to it differently.
But what most with MS have in common is a desire to live as full and active a life as possible before the condition strips more and more choices away from them.
I’m lucky; I travel a lot, do karate, and live a normal life. There’s a lot of ignorance about what MS is. The problem is that it’s different for every person. I was diagnosed in 1999 after I lost my vision in my left eye and the use of my left leg and arm. This is why my dancing is so crap.
Nowadays symptoms are
- Tiredness. That’s why, if you invite me to speak and ask me to take a long haul Economy flight, I’ll need 2 nights e.g. a full day before the gig to recover
- Clumsiness when tired, and slipping over on Oslo pavements in winter
- Dry mouth and swallowing difficulties, which is why I drink gallons of water at conferences and then have to rush to the loo. (Apologies if I rush past you if you’re waiting to ask a question – I’m not being a diva, just seeking a pissoir)
- Trigeminal neuralgia, random sensations like electric shocks, when touched unexpectedly, particularly on the face
My mankini allure is, thankfully, unaffected.
Buy "Calling For The Moon", my debut album of songs I wrote while living in Thailand, India, Turkey. (Only £2, on Bandcamp.)