Non-partisan UK-based Disability campaign. Advocacy for people with invisible illness and/or physical & mental health conditions. Also Carers, their Families and Friends.
Our individual voices are too quiet to be heard, but collectively we can shout loud enough to drown out this tide of abuse against us. Disability Hate Crime, lack of full legal protection, people in care homes costing too much to be let out and not one political party willing to fight for us.
I have fallen between the cracks of the social system. As a disabled parent with Fibromyalgia and arthritis, lone parenting my child with autism, none of the various council Social Service branches knows who is supposed to be dealing with me. Adult social services says my parenting role isn't their problem. Child and Families will only deal with my child and not helping me to fulfil my role as a parent, and neither of them recognise the full picture.
Once upon a time, I was a bodybuilder, working as a paralegal-in-training to a top lawfirm, under the best partners. Then one day the pain started, and it got worse. I worked out more, just dealing with it - as I've always done with tough times, and it just spiralled. Brushing my teeth became an ordeal. I had to choose clothes I could actually fasten as I could no longer do buttons. I would sit on the bed for ten minutes, fifteen, the tears streaming down my face as I muttered under my breath "get up, get up, you have to get to work, get up, get UP."
I lost the job. And then I realised all those years of working hard and being a good little cog in the great wheel meant, well, they'd just go and get another cog, and throw the broken one away.
Weight piled on and I didn't know what was wrong. Thankfully no cancer; thyroid looks dodgy but without a private test they don't know for sure. Of course, since I'm female the first diagnosis was "depression" and "stress". But then, the fibromyalgia was diagnosed, and my whole world changed. I thought having a disability with a name would help open some doors. Instead, it closed them.
It is a rare thing for me to ever say to anyone just what my life is like. I don't tend to look at it too closely - it's sort of necessary to put on that Superwoman cape and put on the Everything is Fine mask to do your job as a parent. But there are things which throw the whole of my current life into sharp relief, when I have to take a good long look at just what has happened to my world - filling in DLA paperwork for my son, for example. Reading just how much of my day is taken up just taking care of my son the best I am able with every joint on fire is depressing - even more so that I don't even bother claiming for myself as I've already had the condition dismissed on one occasion as being a psychological response to being a parent and I "just need more sleep".
I get that sort of thing a lot: if I "just take a sleeping pill/anti-depressant (and wasn't I depressed anyway?)", if I "just lose some weight and eat properly", if I "just take time to work out a bit daily", I'll improve. That's all very nice advice, but ignores the fact that I was a bodybuilder BEFORE all this. Discipline isn't my problem, eating right isn't my problem. My son has never had a McDonalds hamburger, we don't have soda in the house, or candy. I eat 1200 calories a day, more healthy than any doctor or trainer I see, and I lose no weight. If I work out one day, I feel it for four...and who will tend my son then? If I'm depressed it's because I am fighting an uphill battle completely on my own whilst various council offices try and decide whose problem I am, and what it will cost to give me a paltry two hours' coverage just to clean my house (and so far, the answer is neither of them).
The simple fact of the matter is I know more about fibromyalgia than my GP - and thus he has given me carte blanche to deal with my health, not that I didn't already have it. Traditional medicine is good at treating acute conditions, but the chronic or the "mystery", that's something one has to deal with oneself. There is no cure, no treatment for fibromyalgia which is even remotely recognised by NHS - there are certainly things which help, but who is going to pay for it? How do I prove to social services that I am actually disabled when they can see my limbs are whole? I've become a scholar of myself - I know what foods will set off a flare, and what foods help. I know how much I can do in a day, and how much I can't. More often than not, I just have to ignore that and just get on with it anyway, and that only makes things worse.
In the past year alone I have gone from walking under my own power to needing to go up and down the stairs one at a time. I can't get in and out of the bath anymore, and I wash up in the sink. Everything aches, and the exhaustion means I go through the day in a haze, forcing myself to focus so I can be a parent to my child. I tried silversmithing, and had to give up as my hands locked. I typed legal documents at home - same. I had a rather successful toiletries and soapmaking business but it was so exhausting I had to give it up. Now I'm trying to write again, and just hoping that maybe I'll be able to find at least some job I can stick with for a little while before my disability strips that away as well. My son and I never go out as I can no longer catch him if he runs off, no longer have the energy to chase after him, I don't have a scooter, no car, or anyone to help me watch him when I go out because neither Adult services nor Child services can understand why I need these things, or which department the money should come out of.
We're prisoners in our house, and though I have tried to make it as beautiful as I could (and I even started a blog called Gilded Cage to show progress), we're still trapped here. I spend a lot of time staring at the world from my small daybed by the window, wondering where my life went.
Applying for any help has resulted in being constantly turned down. Rare for me, I called during summer holidays in tears to the Adult Social Services as I was desperate to help, any help, I didn't know what - and was told brusquely that they didn't want to hear about my disability, and I needed to "see a doctor" if there were problems. I had a nervous breakdown in June, and still had to try and chase for assessments for aid...again, I was turned down. I've also been turned down for DLA for myself and having to go through an appeals process, which may take up to a year before I get any results...and, if the reports are true, I'll be persistently put through the stress every few years to see if I actually "need it", given by someone who can't see pain.
Now that's just for me...add to this my disabled child. My son is not like "typical" autistic children - it seems the type of autistic child people are used to dealing with are the quiet ones who stand in a corner and flap their hands. My son is INYOURFACE, running round at full tilt, no sense of danger, always the centre of attention. He's a ball of energy and takes two people to keep him under control at school. Cheap toys which another child might be able to make last for a while break after a few hours. There are a lot of charities willing to offer toys or short breaks, but toys would have to be very durable, and short breaks to be honest, are not "breaks" for me - they're extra work and I'm usually exhausted by the end of it. He can be polite and talks very nicely, but that is due to me keeping a careful eye on his diet, giving him various supplements (vitamins, Omega 3-6-9), and lots and lots of work. It's nice that people think he is therefore a very well behaved boy...but it doesn't help to think that I have found a "cure". A medicated person is not cured. I have had to make this painfully clear on one occassion by sending my son into school for a week without any of the typical measures (no supplements, allow him to eat gluten foods). He exploded at school, and they couldn't believe how he was behaving. I told them calmly that how my son was behaving was exactly like what he was - a child with autism. What they were seeing was what I saw every morning just before school, and every day after school when he was exhausted from trying to be a good little "mainstream" child. He isn't - rages, tantrums and so forth are NORMAL, not "bad behaviour". I deal with it daily.
I also know more about what my son responds to than anyone else - I know what he loves, I know what he hates. I know how to deal with his tantrums and when to give in, and when not to. In my son's case, because he is a child, and because he is mine, his issues are the more frustrating as the sheer lack of knowledge out there (or the "latest study" which tries to paint a broad swath over what is rightfully called a spectrum disorder) does my son more harm than good - I can see issues coming from a mile away and I can warn others of its impending arrival, but I'm rarely listened to until the explosion arrives. The lack of help for what has already been described as an epidemic is ludicrous; what good is a short break to me when there's absolutely no "break" involved? And why is it so bloody hard to CONVINCE anyone of this without extensive studies and bits of numbers on a graph when an hour in my son's presence speaks for itself?
How is it people who should know better think "if a child talks, he's not autistic"? It's even been hinted at that I have "embellished" on his DLA claim. But these people aren't the ones who clean the faeces off the walls at 2am, or get the phonecalls from the school when he throws a chair at a student. If my son appears "cured" it's because of all the work and time and effort I have put into raising him. I sacrificed my health, my career, my marriage, my life on the altar of parenthood. But that doesn't mean my energy is inexhaustible.
When I finally managed to secure DLA for my son, the person I spoke to who confirmed the backpayment was coming was told not to file to my old account, but to my new one. I was told he would "try to remember to post a note" to send me a form in the post to change the details (which never came) and that was that. End result £800 deposited to old account, and I was only about to get £350. The rest has been absorbed by the bank and there was "nothing the DLA can do".
I tried to close the door to the study so my son couldn't hear me sobbing, but he did anyway. It may seem a "administrative error" to the Council, but that cost me over £400. There are quite a few of these "administrative errors" of late - and for someone who has to fight to find the energy and concentration to fill in the dozens of labyrinthine forms we're given as disabled people, that is time I cannot afford to lose.
It's a job to you, I know; it's just a number on the budget printout. It's statistics.
But this is my LIFE you're cutting.
I only have the energy to be an advocate for one of us...and because I am a parent, I will be an advocate for my son. For myself: cod liver oil, calcium and paracetamol, warm baths and the heater cranked to full in my room till it feels like an oven so I can sleep. When my son is in school I try and clean up the wreckage of the house, ignore my own needs, and just try to hold it together for my child. No washing the hair, no new clothes, none of those things which most women consider vitally necessary to life. I haven't been in a beauty salon in years - and if I did, who would wash my dishes? Trips out are exhausting, even for good things, and there's no transportation programme where I live which will help disabled families.
I learned not to ask for help because as I am not a UK citizen (US citizen and I worked here when I could work) I know exactly how the UK views immigrants. I've been benefit scrounging scum before I even bothered to accept benefits, and so I refused to do so. No fancy cars, bling jewellery or five-bedroom house here; I have no telly, no car, no fancy phone. I live on less than £10,000 a year, and I have done so without taking any benefits at all.
It's an existence. It isn't a life - and all those years I worked, I thought the money would be there when I needed it. When I paid my taxes I wasn't "immigrant scum" then; the government took my money quiet gladly.
When I need the help...where is it?
I know the convenient thing right now is to Blame All That's Wrong With Britain on people like me - the simple solution seems to be "find a single mother and point". But no crystal ball told me in 10 years I'd go from less bodyfat than my trainers to someone who can't walk 100 yards without falling over. When I said "I do" I didn't think it meant "until something better that isn't disabled comes along". I didn't know my son would stop talking at two, and I wouldn't hear him say "I love you" till he was five. I didn't forsee the years of tantrums and his tearing my hair out in fistfuls, the agony of trying to keep walking with my son on my back, going silent due to pain, the day my ex walked out because he couldn't take it anymore.
No amount of money is going to change that fate. But if I can somehow manage to LIVE rather than just eke out an existence, then I deserve to do so.
And when the time comes for you - and it will, hopefully later, rather than sooner - I'd hope the money is there for you too.