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Shite Christmas

morningstarMorning.Star wrote 12/25/2017 at 09:12 • 8 min read • Like

I've been looking forward to this all year, but now its here, and I'm not happy at all. Its been ruined again, like it usually is by being flat broke. Which I am again as well.

Those who know me personally know I have a story to tell. Much larger than the story most know - that of the strange little bloke who wandered into Hackaday in a catlike manner and made himself comfortable. Artist, musician, hacker, and carer to Bea, his profoundly disabled daughter.

Those who know me personally also know I'm an auteur, although my autism is mild and I'm not totally locked-in. Or so it appears anyway. Actually, because of my Synaesthesia I have access to a world nobody else does, although I'm lucky in that I can describe it unlike so many others.

I joined HaD ostensibly to find others like me because I'd never met anyone with both musical and artistic abilities before, much less anyone who didnt immediately either defer to my skills or challenge me, one way or another. Women in particular are bad for this; those that didnt worship the ground I walked on saw me as competition, and sadly in latter years there's been little in the way of love. Oh, I know there are women out there who'd love to spend the night with me, and I'd be happy to let them, but for Bea.

I'm not the kind of bloke who sleeps with a woman once, and not on a date. Thats for getting to know someone, and it takes a lot more than a few drunken hours to do that. I can get my guitar out, and play their heart-strings if I wanted. I dont, because its deceitful to use a gift to get something I want, and sex is fairly low on my list of needs by now. Its necessity, I've been alone for two decades and learned to sublimate that kind of frustration into my work rather than turn out a total wanker like most men I know. It is a little strange that the worst of them have partners and rail on me for being alone... Weakness isnt a sin though, its just a basic character flaw and something I've managed to eliminate.

Thats not to say I dont have flaws because I do. The Truth being the biggest one, because nobody likes that except me it seems.

Speaking of the truth, that brings me to my story, and why I'm not enjoying Christmas at all.

Bea is tucked up in bed, waiting for Santa to bring her gifts. Or at least, she's waiting to open the ones she knows will be there for her every year. I dont know what she actually thinks, bless her, but she believes in magic and love and all the things that I too hold dear but have become jaded by the harsh realities of life. Frankly, I dont know how she holds onto her innocence because I cant.

I do believe in Magic, how could I not? But its an adult belief, one based in experience and not awe and wonder. I'm untrained and self educated, so I've earned my skills the hard way. Bea just has everything given to her and has no need to push herself so she doesnt, and she doesnt respond well to pressure. This plays out when she doesnt get what she wants or needs, but because she is unable to communicate symbolically she cant tell me about concepts. These I have to discern from her behaviour, and as her advocate, make them clear to others.

If she feels ill for example, all it takes is a bit of attention to find out what ails her. Right now she has an upset tummy. Thats rare, maybe a couple of times over the last decade she's had actual diarrhoea, but she is also inclined to use that as a weapon and soil herself repeatedly in protest to something she doesnt like. Its a disgusting habit and one I battle constantly; if I dont give her what she wants, I'll be sanctioned. So when the local authority decide to change her care provision in any way, I have to spend my days on my knees scraping excrement off her and the house.

For this I'm unpaid and uncompensated, and I do it for 102 hours a week which prevents me from realising my dreams, or earning a wage. I do get respite from it, I get a weekend off a month while she goes to a care home. Sounds great, as does the daycare 4 days a week, sounds like I get a life of Riley on benefits with nothing to do all day. Well yes, it would be if the local authority actually looked after her. She doesnt get one-to-one care unless she's with me though, so the reality is this.

During her time in daycare (for which she is charged) she sits in the hall rather than engaging with the others. She does have behavioural problems, but compared to most of the others it isnt marked. You wouldnt know she was disabled to watch her on her own, at least for a while. She doesnt have any social issues, and she's disturbed by those who do so its unfair to throw her in amongst them and treat her as the same. She does need assistance, but she doesnt want help interacting with others with severe behavioural problems. Who does? Its challenging and requires special training, and only those who really really want to be involved are, they become carers. Anybody else gets a job where they are comfortable, and if they arent they leave.

Me and Bea do not have this right to choose our friends, colleagues. We are all 'disabled' and lumped together. Nobody considers whether Bea might like a friend who understands her, who doesnt scream and throw things, or ignore her studiously and rock in their chair, or many of the other disturbing things people with mental disabilities in particular do. I myself have been called horrible names for having unusual abilities rather than disabilities, and segregated the same way. Oh, thats not right, lock it away out of sight so it doesnt upset the norms.

Well in their efforts to keep Bea away from the norms, they've managed to give her food poisoning for Christmas, and I've been up to my neck in puke and shite. Thanks guys, that was really considerate. I asked for a break, a couple of days to get ready for Christmas, and they send her home for me to nurse instead. That was only two weeks after they managed to completely lose her in Daycare.

I had a phonecall to ask how she was, as she hadnt come in that day on the bus. Considering I'd sent her off that morning on it, I was alarmed, and next thing I know theres a search party organised to find her luckily safe and well still sitting on it out in the car-park. She doesnt wander off, and stayed put, but the fact was it took social care two and a half hours to even notice she wasnt there, when they are supposed to schedule her day.

I was distraught, they were in a total panic, but they now have buried the issue like it never happened. Just like they buried all the other poor and less fortunate souls that met a sticky end at the negligent hands of people paid to look after them. People like Connor Sparrowhawk, who drowned in a bath, unattended. It isnt good enough that this happens, and it certainly isnt good enough when we have to fight for compensation we shouldnt need after each tragedy. The system is broken, and has to be fixed - not swept under the rug.

This approach to care is what leads me to be here as I am.

19 years ago this coming May, I became a single parent and sole carer. My partner and the kids mum, finally broke under the strain of a bipolar disorder and a disabled daughter and lost the plot. She tried to end me, plugging in a TV I was working on that threw me across the room. But I survived, and chalked it up to accident. Then she put me in hospital with poison, and was so enraged I survived that she took a knife to me. It convinced me the relationship was over, and I threw her out and raised the kids myself. There were court battles, she stalked us for years even with a no-contact order, and I spent the first 6 years of caring without even respite. A friend eventually invited me to a social event I couldnt take Bea to, and questioned that, however Social Services denied the service even existed. It took a solicitor just to get that basic right out of them.

By 4 years ago, with respite, I had managed to successfully raise two kids to adulthood, and her sister was doing well as an A-level Art Philosophy and Music student in her last year of school. She was looking at a university degree and planning her future when Bea turned 19, and all of a sudden things changed. Bea's continence care package was cut off; she was provided with sanitary products that were suddenly gone. Her benefits were cut off too, and mine. I complained of course, but was met with a blank. We wound up eating out of the Food Bank, debts piled up and eventually the Council, who owned the house we were renting threatened us with eviction for non-payment of rent. Molly threw in her schooling and went to live with her boyfriend, and got a job working in a builder's yard.

Yes, I do hold them personally responsible for that. Instead of a university degree, my daughter lugs wood and gets whistled at by pervy builders on minimum wage. And instead of me taking up a position I was offered in a prestigious university teaching robotics this year, I'm still on benefits scraping poop.

Because of this, Social Services pointed out that I could no longer care for Bea and accused me of alcoholism, drug abuse, mental instability, neglect, abuse and fraud so they could take her into care, and did so without even so much as asking her opinion. It took me numerous visits to doctors to establish that wasnt the case, and with medical evidence I managed to get Bea out of care and get advocacy for her. However that advocacy is now used against me.

During my visits to the medical services, the evidence Social Services had used to damn me turned against them, so they gave me the advocacy and left it to me to care for her as well as speak for her. This advocacy is what keeps me on benefits unable to sell my work, because my legal duty means I have to give Bea what she asks for. It's immoral and illegal to force a man to work for no compensation; literal slavery, but I'm forced to do 100 hours unpaid work a week that nobody would touch unless it were very well paid indeed. I am free to commit Bea into care and leave any time I like, but thats not what she wants. Not what I want either but thats besides the point. It isnt my decision to make, its the State's. That is illegal; even the Queen cannot force me to do this. She can ask, but the answer is still no, not uncompensated.

It is also illegal for a disabled person to be forced to use stairs - we have 32 concrete steps to our Maisonette that she has to use twice a day to get to daycare. She also has to track through human and animal excrement, vermin infested garbage and flooding on the broken walkways. Nobody should live like this, let alone her.

I've given Social services until my Birthday, halfway through January, to make changes that we're satisfied with or I'm going to litigate. They have been warned, they have been threatened, they have been given an ultimatum that they have ignored.

Duty of care, or compensation. Its the law.

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Discussions

Ulysse wrote 12/31/2017 at 15:07 point

You and Bea are brighter than all of us together.
What can we say? We love you.

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Morning.Star wrote 12/31/2017 at 22:49 point

Awww Thank you Ulysse, thats beautiful. Best New Year wishes to you and Pablo, Happy trails buddy! :-)

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