Non-24-Hour Sleep-Wake Disorder is, as I experience it, a prototypical "social disability". Day to day I experience no symptoms. Yeah, even subjectively my condition has no symptoms. I'm on no medication.
I am, instead, disabled by the people and social structures that surround me. The 26-hour man can't fit into the 24-hour world. The banks close, the offices close, the shops close, even hospitals dwindle into a largely passive state as the higher-ups clock off. My body goes nocturnal for weeks at at time, but unpredictable enough to make shift work impossible. I can physically and psychologically 'cope' on an enforced 'social' schedule for about 2 days before the shit hits the fan. These two days can take up to 2 weeks to recover from.
I'm a bad sickie. I'm not the sort you can package and put into a feel-good piece in Hello. I get angry about the things around me; the prejudice and oppression, the hatred and the despair. I shout and cry and kick up a fuss. Perhaps the 'worst' aspect of me, though, is that I don't want to get better. I see society as the thing that is "broken", not me. I'm formalising the idea that circadian rhythm variances are just another unappreciated from of human variation.
I've been under the care of a consultant neurologist for something approaching 18 months now. Before that, I had something like 8 referrals to various consultants in varying specialities, after trying various GPs for 5 years or so to get a referral. I've played the medical games and jumped through their hoops.
Every treatment has made me feel 'worse', and had no effect on my circadian rhythm in the slightest. My neurologist, in a bit of a Hail Mary, suggested something which made me cringe. She wanted to admit me for a week, and have me physically forced awake and drugged with Modafinil every morning, then sedated into unconsciousness every night. That sounds like torture. Other members of the Circadian Rhythm Disorder community were shocked. I wasn't; it's just a repackaging of every other "treatment" we've all been told to try, except a bit more forceful. There was no reason to expect it to work, I foresaw more damage than gain. And I refused.
Those around me were outraged. I'm on Employment And Support Allowance, and have been for about 18 months. I have a moral obligation to 'get better' so I don't drain the state dry, they cried. Someone even reported me for fraud when I refused that 'treatment'. People apparently think I lack the right to make decisions about my own body.
Someone else was worse; and I make a point of not discussing my condition with her. She's a naive ableist. "There has to be a treatment", apparently. I should "accept doctors know more than [me]", when more often than not they don't. I consider a doctor "good" if they even know what a circadian rhythm is. It's not some New-Age hippy rubbish, it's a well known and essential part of human biology and neuroscience.
There was worse to come.
"If the treatment worked, you could get your life back. All that hard work wouldn't have been a waste".
The 'hard work' she is talking about is what other people would call 'an education'. I have two degrees; a BSc (Hons) First Class and an MSc with Distinction. I seem to remember when education for its own sake was seen as a noble endeavour. Anyway, I digress..
The obvious implicit assumption here is that I can make no use of an education, what being a 'lifeless' sickie. Insult me in any way you wish and it would probably be accurate, but I am not 'worthless' and 'a waste'. I contribute to my society. I try to improve it politically, and I do research that could actually improve a lot of peoples' lives. One piece, on improving well-being of Undergraduates, is being submitted for publication. The other, a phenomenological piece on peoples' experiences of N24 is currently under-way. I'm contributing, in spite of my condition and my 'inability to work'.
I, quite frankly, have a life. I still do the things I enjoy. I smile, and I laugh. I get too drunk. I cry. I find joy in some things, sadness in others. I have hopes and I have dreams. I have love and I have sex. I have my life. I've lost ambitions for my career, I've lost the hope that I will live a "normal" life. I'm afraid of certain things in the future; missing out a sentence in my ESA50 reducing my income to £0, or living in poverty. What I thought my life is, and what I thought it was going to be, forever changed when my condition was recognised. My life wasn't destroyed or stolen; it was changed.
People with disabilities, from every walk of life, 'contribute' to society. This can be small unpaid contributions to scientific endeavour such as mine; it can be the incredible campaigning of the Broken Of Britain, Sue, Kailya and that gang, it can be the people in local and national government (e.g. Barrenness Grey-Thompson), or it can be the child who brings a smile to their parents' faces.
We disabled people have worth, and we most certainly have "lives". You think otherwise at your peril.