29/52 2018

Week 29
16 - 22 July

A slightly bittersweet week. Jamie loves to "help" with vehicles of any kind and Steve includes him with the regular maintenance jobs like checking tyre pressure, topping up the washer bottle, and as pictured here, checking the oil levels. He stands patiently with the kitchen roll, and squints at the dipstick with intense concentration.



But in this picture, Steve and Jamie are checking the oil on Steve's beloved motorbike... and the following evening, after more than twenty years riding, Steve had his first crash.

Thankfully, Steve is a great believer in wearing All The Gear, All The Time, heatwave or otherwise. Helmet, jacket, body armour, Kevlar trousers, proper boots and gloves, meant he was able to walk onto the ambulance unaided with nothing worse than a broken collarbone and some spectacular bruises. The bike... it's obviously damaged, but until Steve is recovered enough to heave it up onto the centre stand (bearing in mind the handlebars were smashed) and inspect it properly, we don't know if it's reasonably repairable or not.

Jamie is doing better than we have any right to expect of him, when it comes to being gentle and careful and only having cuddles on one side of his daddy.

1 in 200

I am still breastfeeding Jamie at 18 months old. First thing in the morning, last thing at night, during the day if he requests it.

This shocks some people, because in the UK it's a very unusual thing to do. Which is odd, because it's exactly the recommended path according to the NHS and the World Health Organisation. Exclusive breastfeeding to 6 months, then breastfeeding alongside other foods and drinks, ideally until at least 2 years, longer if mother and child both want to.

And yet.

The trouble with being 1 in 200 this way is that there's 199 mums who believe you're criticising their choices. So I get all English about it and make sure to validate their choices. I nod and smile and agree that whatever difficulties they faced were insurmountable, to the point where it was barely a choice at all. I imply that in their situation I would have likely made the same choice. I make cracks about how I'm only breastfeeding because I'm too lazy to sterilise bottles.

But a bit of me rages inside. I, too, had some difficulty getting started (I recommend the NCT Breastfeeding Helpline 0300 330 0771, and remember to use a phone that you can put on loudspeaker). I, too, would like to have a day off. I'd like my partner to be able to do the bedtime routine once in a while. I've made medication choices based on breastfeeding compatibility to the detriment of my own health. I've ridden out two bouts of mastitis during which, obviously, I had to look after Jamie even while hallucinating with fever. I've been bitten, basically once per tooth. Breastfeeding might be natural but it's not the soft option. I've worked hard at it and committed to sustaining it because every resource not sponsored by a formula company says it's the best and right and correct and most beneficial thing to do for my child.

It really upsets me that I then end up having to defend that choice, that effort. I've had people suggest that I do it because I want to delay Jamie's development. Or because I'm too possessive of him and don't want to let anyone else care for him. Or because it makes me feel important. Or because I don't know any other way to calm him down. Or because I'm an exhibitionist. Then we have the people who aren't so explicit about it, the double-takes, the "you're still breastfeeding him?!?" remarks, the queries about when I'm going to stop. It all grinds me down.

I'm not expecting a cookie - the cookie is knowing I'm doing my best for Jamie, and Steve gives me a lot of encouragement too - but less criticism and incredulity would be so nice.

An Update

In my last few posts, I talked about three major obstacles to the baby preparations.

One was the difficulties of getting assessed for a suitable wheelchair. After my last post, a number of people gave me details of companies and charities who had been useful to them. Sadly when I followed up these leads, some weren't able to help, and others were unhelpful by choice, showing me the chairs they wanted to sell rather than the chairs that would meet my needs, and calling it an assessment.

Thankfully, this turned out to be the easiest situation to resolve. The experiences with the "assessors" convinced me that I might as well ditch my fear that going into a mobility showroom would leave me prey to unscrupulous salespeople. I called a local showroom, explained my needs, and arranged an appointment. When I arrived, the salesman had several chairs lined up that did meet my specifications. After a bit more discussion and measuring, I was having a test ride, which included seeing if my favourite one would fit in the car. It did. The salesman then encouraged us to take our time, go home, have a think, and phone him on Monday if we wanted to buy it... and a brand-new one was delivered by him to our house at the end of that week.

I'm gradually getting used to it and I think it's going to meet my needs well.

There was Social Services, where "my" social worker had gone off sick less than three months into my pregnancy. The refusal of Warwickshire Social Services to transfer my case to a different social worker "because she'll be back soon" meant that I had no support at all until my pregnancy was past the half-way point, at which stage it was conceded that the Duty Social Worker team could help out with my case if they had time. I saw a Duty Social Worker at 26 weeks pregnant, but at the time of my last post, I wasn't confident that it had gone well.

At 32 weeks and with my assessment still waiting to be seen by the decision makers, my Health Visitor decided to see if she could intervene in any way. She was told that "my" original social worker was due back in the office any day and would definitely call her back as a matter of urgency. Except of course that this was every bit as much a lie as it had been every time I'd been fobbed off with it during the Spring.

Then at 33 weeks pregnant, for reasons it's probably best not to speculate on, I was officially reassigned to the proper caseload of the social worker who had been the Duty Social Worker who had seen me almost two months earlier. A few days later, I was given a date for my caesarean section which will be at about 39 weeks. I'm not sure if this deadline helped - at 35 weeks pregnant, with four weeks of pregnancy remaining, I think my assessment for additional support during pregnancy was very nearly ready to be submitted to the panel...

On the bright side, the Health Visitor and the no-longer-duty Social Worker are liaising directly now, and I think the midwife might be as well.

Which means I'm free to worry about the stairlift. At the time of my last post, after the delays caused by the absent social worker situation, we had sped through the assessment process thanks to a helpful and super-efficient OT and were awaiting a quote, which arrived, as it was supposed to, just before 28 weeks of pregnancy.

We signed, wrote a cheque for a deposit of over £2,000, and got it back to them next-day. According to the contract, this meant installation would happen within 6-8 weeks - so at the very latest, before 36 weeks of pregnancy (or "well before the end of September" for those of you who prefer a traditional calendar). It was cutting it fine, but it would be okay.

We were quite surprised to then be offered an installation date in the middle of October, or 39 weeks of pregnancy.

There were two problems with that.

One was that it was 3 weeks over the maximum 8 weeks promised in the contract, which really is not good enough when you are forking over five thousand pounds for essential equipment. I signed that contract on the understanding that my stairlift would be installed within the timeframe specified in the contract.

The other was that the date they were suggesting was the actual date for which my caesarean is booked.

After a lot of phone calls (which is always me phoning them, because their inability to stick to their own suggested timescales extends to calling back when they say they will), they have managed to rearrange for installation to happen in the first week of October. This is still breaching the contract - but I don't have the choice to make a big deal about that, because I need a stairlift in place before the baby gets here, and it is too late to get one from a different provider.

I am in my final month of pregnancy. I am supposed to be thinking nice, nurturing thoughts, and doing gentle exercises, and nesting. If I was at work and experiencing this kind of stress, I would be advised to start my maternity leave now. But there's no maternity leave from this situation.

Wheelchairs

As most people who know me are aware, I currently have Alber E-Motion M15 power assisted wheels and I have loved them for every minute of the five years I've had them.

I was incredibly fortunate to get help from Access To Work in being assessed for and part-funding them, and even more fortunate that being self-employed and working from home I was permitted to use them as much as I needed to. They're not categorised as being for my personal/social/leisure use as the assessment was done purely with my work needs in mind, but at the same time, no one expected me to remain housebound/struggle to walk/submit to being pushed/use a badly-fitting generic non-powered wheelchair/etc when I have a properly-assessed-for power-assisted fitted wheelchair that is ideal for my needs sitting right there in my house.

Predictably enough, with pregnancy my wheelchair needs are changing. My wheelchair as fitted five years ago is becoming increasingly uncomfortable to sit in, and my stomach muscles are no longer strong enough to allow me a proper push, especially going uphill, and the increasing size of the bump means I can't lean forwards at all. Even on ideal terrain, such as the absolutely flat smooth surfaces in my local supermarket, I still have to stop and lean back when the baby decides to have an energetic wiggle.

I'm only going to get bigger for the next three months, and my stomach muscles are going to keep loosening and stretching, and then once the baby is born I want to wear a sling rather than trying to negotiate fixing a pram to a wheelchair (or worse, having a PA pushing my baby in a pram alongside parents with their babies in prams while I am baby-less, self-propelling and trying to pretend that I'm the one of us who belongs in the group of parents walking around the park with their babies), not to mention that it's going to become even more important to conserve my energy so that I can meet the baby's needs... I'm going to need a fully-powered wheelchair.

We knew this would be the case before we started trying to conceive, and as such we saved up to be able to purchase a fully powered wheelchair when the time came. My needs aren't especially high, my body is not particularly fragile or unusually proportioned, and of course I won't be sitting in the chair all day every day. But, with the baby in the mix, we don't want to buy something random and second-hand - we were always clear that we'd want it from a reputable source, covered by warranty, and with servicing available locally. The price range we were expecting was between £2,000 and £6,000.

One problem is that the unexpected £5,000 we already have to pay for the stairlift, plus a rent rise and a couple of other unexpected factors that aren't disability or baby related, has left us with rather a different financial picture than we'd imagined.

A bigger problem, though, is that I can't get an assessment - and am loath to just trundle into a random mobility supplies shop and ask a salesperson to assess me, in case what they decide I "need" turns out suspiciously close to what they will make the most commission on or are desperately trying to shift out of their stockroom.

The NHS Wheelchair Services position is that powered wheelchairs are only prescribed for people who need a wheelchair to move around their own home. This is obviously not the case for me. They also can't prescribe a self-propel wheelchair to someone who can't self-propel, and attendant wheelchairs are somewhat dependent on *having* an attendant.

This issue couldn't be tackled ahead of pregnancy because resources are quite in-demand enough for situations which already exist, without being done pre-emptively for situations which only "might" occur such as conception of a baby. But my GP and midwife have, since week 10 of this pregnancy, tried every route they can think of, up to and including obtaining the Wheelchair Services referral form and then writing all over it that while we know WS won't fund or prescribe a powered chair for me, maybe they could just *see* me and *advise* on what sort of chair I should be privately purchasing... nothing. The most useful response we've had is "well, whoever assessed for her last chair can assess her again," except of course that was Access To Work and even if they hadn't been hideously defunded in the last five years, my non-work needs for late pregnancy and early parenthood are not their remit.

The Social Services OT also tried, but again, all roads lead back to NHS Wheelchair Services, who refuse to so much as see me.

Following a Twitter conversation with a friend, Scope tweeted to me that I could try the Mobility Trust. I've written to them, but have not yet heard back and I believe from the information on their website that they are more about helping people who already *have* assessments out of the funding hole, rather than helping people get assessed in the first place. Steve and I know that despite our current financial upheaval and zero assets, we're still relatively privileged in that we have an above-benefits-level income and zero debt, and as such probably don't come under the charity umbrella.

The best result I've been able to obtain is that one morning, after an hour or so chain-phoning this or that organisation, explaining the predicament, and being told "not our remit, you might want to try (person) at (organisation), their number is..." I actually got to *speak* to someone at the local Wheelchair Services. They still refused to help with an assessment, but they did give me the name of the supplier they usually use, and told me that they regarded that supplier as being a trustworthy and established local business who would assess my needs without a rampantly profiteering head on. It didn't quite work out that way. I made an appointment to go in and discuss my needs and was proudly handed a couple of PDF printouts from manufacturer's web pages, for incredibly expensive made-to-fit support-everything bespoke powerchairs. The salesman seemed to lose a bit of interest when I said that neither my needs nor my budget were quite that high, although he did offer to get one or two powerchairs in and then call me so that I could test them. This is not the same as discussing my needs and preferences and figuring out which of the chairs on the market might best suit me and then getting *that* powerchair in for me to try. It's fine as a fall-back option, but this is an investment of thousands of pounds of our own money, we'd really quite like a few more options and a little bit of guidance!

Part 1 Part 2

Stairlift

I've been supposed to have a stairlift for quite some time now. But what with the insecurity of living in a rented house, and sharing that house with a non-disabled person who likes to run up and down the stairs unimpeded, we never went ahead with it. I carried on going up stairs on all fours, coming down stairs on my bum, and sitting halfway up/down the stairs having a little rest when necessary. It was okay. I'm under 35 and not exactly frail, I've got solid young bones and plenty of padding on them. When I fall down the stairs, so far nothing worse has happened than some cuts, bruises, grazes and/or carpet burn, maybe a bit of damaged clothing, and whatever I was carrying taking a brief flying lesson.

As you can imagine, being pregnant - having a baby on the inside for now and knowing that once the baby is on the outside I still need to get both of us up and down the stairs safely - changes the goalposts somewhat. All of a sudden I'm a lot less flippant about falls. On top of which, as my bump gets bigger, it becomes physically more awkward (and eventually will be full-on impossible) for me to go up on hands and knees or rest halfway if I need to. Steve and I agreed that pregnancy would make us concede to the stairlift.

(At this point well-meaning people tend to sagely advise us that we should move house to a bungalow. Leaving aside the implied insult that we are too stupid to have thought of such a thing, the trouble with bungalows becomes apparent when you try to actually *get* one. Social housing bungalows are too small, privately rented bungalows are too expensive, purchasing a bungalow is out of our reach, and all types of bungalow are very rare. We do search occasionally, but in every category those few that come up and look like they might meet our needs tend to, on further investigation, be on special zones or estates that exclude us with rules stating they are only available to over-55s or that children are not permitted.)

The delays and difficulties with Social Services meant that I was 21 weeks pregnant before the Housing OT Gatekeeper phoned me - and promptly advised that a stairlift would take at least six months to sort out, which isn't a useful answer to someone who needs to be baby-ready in four months. Happily I was able to persuade her to refer it upwards, with the result that she phoned me the next morning and I got an appointment to see the OT at 23 weeks.

The OT was lovely, as OTs tend to be. Along with various other things, including a referral to a specialist OT service for disabled parents elsewhere in the country, she agreed that a stairlift was required ASAP, and since it was therefore a prescribed item rather than a personal choice, gave us a financial assessment form.

Financial assessments are conducted differently by different departments. They all have different criteria. For example, at present, I'm not eligible for welfare because as a household we have earned income - but I don't have to pay for my basic care package because that is calculated on savings, investments, assets, property, trust funds, etc, with our earned income from our current work being disregarded. For a Disabled Facilities Grant, which is what would normally pay for a stairlift... everyone had assumed that we'd be eligible, but it turns out we're not eligible due to Steve's earnings.

Which means we (meaning he) will have to fund the stairlift privately.

Which will be about £5,000.

There's no choice though. We don't have a downstairs loo and there's nowhere we could put a commode downstairs, therefore if we want me to be able to use the loo with hygiene and privacy, which in the UK is considered a pretty fundamental necessity for anyone, let alone a pregnant woman or new mother, we need a stairlift.

At 26 weeks the OT came back with a couple of engineers in tow to measure things and pull faces, and the proper final itemised quote should be with us by 28 weeks.

They tell me there's then a 6-8 week wait after I get the quote, confirm the order and stump up the deposit before work can start. The particular parts for my particular measurements and prescription need to be shipped in and then of course the relevant engineers must be booked. That will bring us to 36 weeks or as near full-term as makes no difference, or to put it another way, I might end up using a bucket in the lounge after all, or trying to find the money to allow me to spend what should be the "nesting" period in an accessible hotel room. I guess the best case scenario is that if I go into early labour, they might not be able to release me and baby from hospital until the house is habitable.

That the delays and heel-dragging of social services in the first half of my pregnancy has resulted in my basic predictable needs for the final stages being cut this fine makes me even more upset than the money aspect.

Part 1 Part 3

Not 24 weeks

I don't know if anyone was watching closely enough to notice, but there has been no 24 week update, and there is also no 24 week picture, and now I am just over 27 weeks pregnant.

This is largely because there's been just too much other stuff to deal with. All three of us are healthy (usual parameters), no emergencies, just... Stuff.

The first bit of the Stuff is Social Services.

This was very much a planned baby, and part of the planning was getting input from Social Services before trying to conceive. I'm pleased to say that we got a good, positive response. We were reassured that we had an absolute right to a family life, and that Social Services would support us to meet not just basic survival needs, but also to fulfil my role as a parent. The child is not automatically considered "at risk" and if I struggled to meet the child's needs then before Child Social Services would even consider getting involved, Adult Social Services would need to have done everything possible to enable me to look after the child myself. Specifically I was told that instead of my case remaining effectively "closed" (as it is while a person is stable and their needs are being met by their existing care package), once I informed them of a pregnancy I would be on the active caseload of a named Social Worker, they would review me every three months during pregnancy and the first year of the baby's life, or more frequently if necessary, and as such my care package could be altered according to the rapidly changing circumstances.

That filled us with confidence and we went ahead. Spool forward to Spring 2015. Eight weeks pregnant, I met "my" social worker, and we got on well. She was every bit as positive. We decided that she would line up all the various referrals to Occupational Therapy and Independent Living and so on, but given my history we would wait until my 12-week scan before forging ahead, to save on upsetting encounters if anything went wrong.

So, after my 12-week (actually 13 and a bit) scan, I phoned her office... was told she was off sick but would be in touch when she got back the next week. Nothing happened. Phoned again at 17 weeks... was told she was off sick but would be back the next week. Nothing happened. Phoned again at 19 weeks... was told she was off sick and they didn't know when she would be back. I pointed out that the baby was not going to wait indefinitely until "my" social worker was back and asked if I could be transferred to someone else's caseload. The answer was no, but that a Duty Social Worker would call me back.

(Duty Social Workers are to named social workers as duty GPs are to named GPs. They're fully qualified, and authorised to open and read confidential client files and take necessary action. But they're supposed to deal with that day's emergencies and situations requiring an immediate response, not ongoing or future care requiring familiarity with the case or time for research about a specialist situation - and they prioritise their time, so if you *can* wait until tomorrow, the chances are you will.)

Nothing happened. At 21 weeks, I phoned again and explained that pregnancy is only supposed to last 40 weeks, so the baby was more than half-way here, I was having increasing difficulty doing things and that while I appreciated I wasn't an absolute emergency, I really quite urgently needed to hear from a social worker if we were going to avoid me AND the baby becoming one.

Finally, two days after that, a Duty Social Worker called me. He'd opened my file; he'd seen that "my" social worker had been intending to start off a number of referrals as soon as I'd had my 12-week scan but that she'd gone off sick before this could happen; he agreed to authorise and send off those referrals, marked as Urgent in an effort to catch up to where we should be. However, "my" social worker was expected back within a couple of weeks, so they couldn't transfer me to anyone else's caseload or conduct a reassessment.

I was really pleased that things were moving at last, but of course that was when the challenges really started. Because I had no social worker to oversee things or fight my corner, I had to try and comprehend the whole system myself. First getting past gatekeepers, then being referred on to yet more people or organisations, and trying to keep track and make sense of who everyone is, when I see them, what their remits are... I'll go into more detail in another post.

At 22 weeks, someone from Independent Living saw me and agreed to formally refer me to be reassessed by a social worker. At 23 weeks, she phoned me back and told me that the referral had been postponed because they wouldn't transfer me to another caseload, because "my" social worker was off sick but would be back in two weeks. Does this sound familiar? Can you guess what happened? That's right, two weeks later (25 weeks) I was told that "my" social worker was still off sick! But, obviously, they couldn't transfer me to someone else's caseload, because she would likely be back in two weeks!

*headdesk* *headdesk* *headdesk*

Thankfully by this point my list of "two weeks" was long enough that it was conceded I could be reassessed the following week by a Duty Social Worker for my third trimester needs. Her findings would be submitted to a panel who would decide what help I would get.

I honestly felt sorry for that Duty Social Worker. I think like many social workers she went into the profession wanting to make things better for people, but... she was visibly stressed and very disillusioned. I had prepared notes ahead of the meeting with an outline of the sort of bare-minimum support I felt I would need. The moment that has stayed with me is the moment when she sighed and said "I don't think you'll get this. Do you really want me to ask?"

Outwardly I replied that yes, I wanted her to ask, because if she didn't ask, then I definitely wouldn't get it!

Inwardly I curled up in a terrified ball. At 26 weeks, the baby was already wiggling so much that the movements could be felt from the outside, and if anything went wrong, there would be a chance of both of us surviving it. There is no turning back. I'd only started on this journey after getting reassurance that it would be okay - I thought I had been as responsible as possible in ensuring that if I ever did have a child I would be able to provide a decent level of parenting. And now here was a social worker who, in contrast to the positivity of those I saw pre-conception and at 8 weeks, was so doubtful about the likelihood of me getting support that she didn't even want to ask the panel for it.

She also let us know that it would be at least a week before she got the chance to type up the reassessment. In an effort to do something positive, I offered to send her my notes to save her some typing time. Then, before sending them, I spent a couple of days going through them, being rather more specific about the help I need, why I need it, what the risk factors are if I do not have that help, how I am currently struggling/failing to meet this or that criteria because of lack of help. But it is not a positive experience to spend days thinking intensively about the things you will struggle or outright fail to do for your child due to lack of resources that you reasonably believed you would have.

The only other positive I can draw from that meeting is that the Duty Social Worker didn't seem to disagree that I would need the help I said I would. She just feels that with austerity, social workers' requests get turned down more than they might have done a couple of years ago, and she doesn't like it when the panel say "no" to her.

At this stage, there's not much I can do about Social Services other than hope that the Duty Social Worker manages to persuade herself to present my case, and that the panel respond favourably to the information. It will be at least another couple of weeks of hoping before I hear back.

Meanwhile, there's still more than enough to keep me occupied with stairlifts and wheelchairs...

Not the return I'd hoped for

You thought the adventures in cake were pathetic?

Ha.

It can be safely said that 2013 was a catastrophically bad year for me. Things happening to and around me that I could not influence, things I tried to do going horribly wrong despite my best efforts. I would go so far as to say that it was the worst year of my life (the previous contender being around 1998; the big difference being that now I'm in my 30s I have more and better coping strategies than my teenage self). Some of it was single events, some of it was longer-term dramas that just went from bad to worse in ways that would be dismissed by soap-opera writers as simply too implausible. Much of it is still ongoing. Most of it I prefer to keep off the internet.

Still, there were good things. There was sunshine. There was a trip to see friends and family. There were two trips to the Eden Project. There was blue hair.

And through it all, there was my blog, dusty and neglected. I kept thinking about posting but couldn't. Every time I sat down to write, it just seemed too personal or too pointless - or sometimes both.

Coping strategies, right? I should just sit down and write something. Get on with it. Worried about it being too personal? Okay, write something impersonal. Can't think of anything to write about? Well, do something you can write about, and then write about that.

Out came the daffodils, and they reminded me of a primary school "science experiment" where we put food dye in the vases of cut daffodils. The flowers pull up the coloured water, and the petals take on the colour of the dye. For the competent among you, here's the instructions.

So. This blog post was meant to be a nice, positive comeback, lots of pretty pictures, of my lovely yellow daffodils, followed by my lovely multicoloured daffodils.

Unfortunately, this week I've thrown out about a dozen daffodils that... well. If you peered closely, under a good light, you'd recognise a few streaks of colour, but before that, the word that would come to mind would be "dead". "Withered", perhaps, if you were feeling generous.

It's only a mercy that I don't have offspring to look disappointed at me and demand to know why it hasn't worked.

Bad Sexual Etiquette

Warning: this post is about rape issues.

If you are affected by rape issues you may wish to visit the Rape Crisis website (England and Wales).




It doesn't really matter who he is. Maybe he's your boyfriend, of weeks or months or years. Perhaps he's the old schoolfriend who you met again a few hours ago downstairs at the party. Perhaps he's a "friend-with-benefits" who you've known for years. Maybe he's your husband. Maybe he's the man you don't want your husband to find out about. Maybe you've had sex with him before, maybe not.

It doesn't matter. He's a nice guy. You have no reason to think badly of him. Your taste in men is surely not that bad. You've dumped plenty of idiots and refused to even consider dating plenty more. This one has passed the filters, and you want to have sex with him.

That said, you want to use a condom. Again, it really doesn't matter what your reasons are. Maybe you want to avoid disease. Probably, you don't want to risk getting pregnant. Perhaps you're feeling aware that it would, for whatever reason, be awkward for you to try and get hold of the morning-after pill. Maybe you're on the everyday pill but you missed one, or are just wanting that extra layer of reassurance.

So you're kissing him, and both of you are enjoying it, and you want to have sex, but you slam on the brakes and one way or another you raise The Condom Question. And despite the hormones and desires and excitement, you refuse to go any further until he's agreed and there's a reassuring square foil packet sitting ready on the bedside table (or the dashboard, or the refreshments trolley in the company boardroom, hey, whatever works for you).

Then, with gleeful abandon, the brakes, and the rest of your clothes, can start coming off. You're excited. You're aroused. You are spread out, relaxed, enjoying all sorts of foreplay and eager to have wonderful, enthusiastically consensual, penetrative sex.

And he's between your legs
Oh!
kissing his way up your body
amazing kisses
making you feel fantastic
and suddenly
no, he can't be
he's pushing into you
he wouldn't
and the little foil packet is still sitting there, unopened.

"No!" you say, and your voice sounds like it's coming from a long way away, so you try again, "no, we need to use a condom..."

"It's okay," he says, his familiar, nice-guy face smiling over you.

"No, it's not okay!" you shout? whisper? not even sure any more and you try to push him away but your muscles won't work properly even as he caresses your useless spaghetti arms and gently, almost lovingly, but quite firmly enough, holds them down over your head, and tells you to relax I would relax if you would just put the bloody condom on because he's not going to come in you.

As if that makes much difference. You were awake in sex-ed class, you had it drilled into you that pregnancy and disease are possible from pre-ejaculate. You're certain that at this point in your life you don't want to deal with the mental and physical strain of a pregnancy, or an abortion, or childbirth, or raising a child, or giving a child up for adoption. This is not a risk you wanted to take.

But "no" hasn't worked and I can't move and my mind is whirling too much to give a lecture on sexual health issues...

His face is still over yours. He's still smiling, still kissing you, mistaking your panic for pleasure. He tells you that he wants to feel you orgasm like this orgasm? I'm not even turned on any more and with a shiver you realise that if you can't physically force him off you then the only remaining option is to fake it, get it over with, quickly as possible, minimise the risk, get him off me.

So you breathe, and you try to ignore the little voice that's screaming getoffme getoffme getoffme and you say oh, mmm, yes, NO! and flex your Kegel muscles as best you can until oh thank god he's convinced, and he withdraws, and the smile on his face tells you that your faked orgasm has reassured him that you actually really enjoyed that experience when in fact you're lying there still and boneless and in shock, trying to process what's happened.

He didn't come. Do I still need the morning after pill? Would I even be able to get hold of it without admitting what's just happened? Am I prepared to take the risk? How do I arrange a sexual health screening without anyone finding out? What's an abortion actually like? First things first, what's the date, how long until my next- WHAT THE FUCK IS HAPPENING NOW?

What is happening now is that he's pushing into you again, and this time he's wearing the condom, and you are expected to be grateful for this can't be happening, can't be happening, can't be happening you feel sick and your stomach muscles clench and you gasp for breath and this is also interpreted as excitement and finally he comes and he withdraws and this time you practically leap off the bed and get your clothes back on and you're out of the room in ten seconds flat even though your arms and legs still aren't quite doing what they're told.

He follows you. He's the clothed, smiling man who not half an hour previously was an entirely nice chap, talking to you and making you smile and showering you with affection.

He doesn't think he's a rapist.

Do you?

Problem?

The big line being pushed by our beloved government this week is about "problem families" and the need to "crack down" on them. The right-wing press have seized on this, breaking out charming descriptors like "Britain's worst scumbags". There are apparently 120,000 of them, costing Our Brave Nation £9bn every year. Even the supposedly-neutral BBC agrees, although by now their oft-used phrase "according to ministers" basically translates as "you might want to take this with a pinch of salt."

So, what makes a "problem family"? How do we define the country's "worst scumbags"?

Well, that's where it all gets a bit runny. No one's quite sure where the figures of 120,000 and £9bn have come from - those ministers so keen to make these assertions aren't so keen to have their assertions examined and have not been forthcoming with their sources. Fullfact.org have given it their best shot and come up with the 117,000 families in England classed as "Families with Multiple Problems" as the nearest likely contender. The definition of that is clearly set out. An FMP is a family that matches at least five of the following seven criteria:

• No parent in the family is in work
• Family lives in poor quality or overcrowded housing
• No parent has any qualifications
• Mother has mental health problems
• At least one parent has a longstanding limiting illness, disability or infirmity
• Family has low income (below 60% of the median)
• Family cannot afford a number of food and clothing items.

This quite surprised me because by that yardstick, I spent most of my teenage years in an FMP. My mother was not in work (1) due to her longstanding limiting illness, disability or infirmity (2) which meant that once my father was gone, we were a single-parent family reliant on state benefits which were a low income (3). We had difficulty affording proper food (a regular meal was "pasta and gravy", no meat or vegetables, which I didn't even realise was unusual until I was 19) and most of my clothes were second-hand (4). And our house was in a pretty awful state of repair, cracked windows and dangerous electrical wiring being two of the simpler issues (5). Ding, Family with Multiple Problems.

Eric Pickles, the Communities Secretary, has been ranting about these families not in terms of their circumstances, but in terms of their behaviour - crime and social disorder, truancy, alcohol abuse, and "ruining the lives of their neighbours".

Hmm. My sister and I were never in trouble with the police, we always had a parental note on the rare occasions when we missed school, the only alcohol in the house during our teenage years was the occasional bottle of wine given to our mother as a gift, and we got on well with the neighbours on both sides. We performed well in school, engaged in extra-curricular activities, got home by our curfew and were basically normal, boring, well-behaved kids.

Which on one level is admittedly irrelevant. My personal circumstances are anecdote, not data. To examine the data, go back to the Fullfact article, which is excellent in that regard and links back to all manner of primary data sources, and indicates that the number of FMPs which also have children exhibiting problem behaviour is closer to 46,000.

What I can say - anecdotally - is that while my teenage self would have accepted the descriptor "Family with Multiple Problems" as an unpalatable but undeniable truth, she'd be rather upset by the idea that to live with those problems was interchangeable with behaving in an antisocial or criminal manner. When getting home at 5pm after doing her homework on the school computers with a bunch of other kids in similar circumstances, she'd be quite put out by Mr Pickles' view that children like her needed to get their truancy under control. When babysitting, for free, the child of someone who volunteered one evening a week at a social group for people with learning difficulties, she'd be quite angry to hear Prime Minister David Cameron assert that people like her and the person she was babysitting for were creating "a huge amount of social problems, for themselves but also for the wider community".

Please, please, please, can we stop conflating "poverty" and "immorality", "lives with problems" and "is a problem", and "not in paid employment" and "does nothing of any use at all."

Disabled, not dead

Yesterday, my Twitter feed was alight with people being gobsmacked by the content of Panorama's so-called "investigation" into benefit fraud. Interestingly, I understand that neither of the major culprits "investigated" and plastered across the BBC's prime viewing have actually been charged with benefit fraud. More worryingly, it appears that several of the activities the "investigator" took umbrage with weren't actually activities that would preclude a benefit claim...

I didn't watch the programme, in the end. Being, y'know, disabled and all, watching lengthy TV programmes late in the evening isn't something I'm very good at. I was going to catch it on iPlayer but have since decided that it will only upset me. So I want to make clear that this post is not a complaint about the Panorama programme because complaining about a programme I didn't watch and don't intend to watch seems rather ridiculous.

But I am qualified to comment on some of the urban myths surrounding disability, because they do impact me and my friends on a pretty regular basis. Facts and figures unless stated otherwise are drawn from HM Govt's Office for Disability Issues overview of official disability statistics, which can be found here.

Myth #1: Disabled people claiming benefits do not work.
In fact, about 48% of disabled people are employed (although this is compared to 78% of non-disabled people). Disability Living Allowance (DLA) is not means-tested and is awarded based on the impact a person's impairments have on certain aspects of their day to day life, such as washing, dressing, cooking, communicating and moving around. Disabled people often incur unavoidable expenses in trying to meet these essential needs, and DLA recognises that it is unfair to attempt to force working families and individuals to try and meet these non-negotiable and unasked-for additional costs out of their earned wages. Some disabled people work and claim Tax Credits, which is another legitimate form of benefit available to working people. And ESA has provision for Permitted Work for people who can only work very limited hours or in a very supported environment.*

Myth #2: Disabled people are obliged to be poor, and may not own assets.
While "a substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled," wealth does not make a family immune to disabling illnesses or injuries. If you own your own home and live in it, then in the long run it's cheaper to let you carry on living there as long as possible than to attempt to rehouse you and have to pay Housing Benefit to you once the capital has evaporated.

Myth #3: Disabled people should not engage in physical activities.
Show me any person with an ongoing long-term physical or mental health condition, and I'll show you a person who has been advised by their medical professionals to take up swimming and/or gardening and/or going to a gym in the hope of staying active and healthy in so far as that's possible. It's always recommended, even if it doesn't get formally funded by the NHS under the guise of physiotherapy. Also: Paralympics, anybody?

Myth #4: Disabled people should not have a good time.
This is the most ridiculous of all - the idea that if a disabled person attends a party, or goes to the pub, or goes shopping, or is seen outdoors laughing with their friends, it's an affront to all right-thinking taxpayers and incontrovertible proof that "there's nothing wrong with him".

We live with our conditions. It's not like being sick and miserable for three days, but it's also not like being sick and miserable for three decades. It's more like being sick and miserable for three months, getting an idea of what's happening, spending three months in a horrible chaotic whirl as you realise your life is changing forever, taking anything from a few months to a few years to grieve and come to terms with what is happening to you, and then... you live. Which means you grab every opportunity you can to have a good time and laugh with your friends, just like any other person. You abandon the "miserable" by the side of the road.** We laugh. So sue us. We're not locked in a box out of sight. We're disabled, not dead.


* This is a gross over-simplification because to properly and fully explain would take another ten blogposts.
** At least until the next time you find yourself and your community under attack in the media.

Repeat

I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.

In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.

In summary:

• If you have a doctor's note stating that you are unable to work because of illness, injury or impairment, you apply for Employment Support Allowance (ESA). For the first 13 weeks of your claim you are paid the "assessment phase" rate of up to £67.50 per week.


• If the assessment classifies you as entirely unable to work, and unlikely to ever be able to work, for instance because you are bedbound and terminally ill with a life expectancy of less than a year, you are granted unconditional ESA at the "support" rate of up to £99.85 per week.


• If the assessment decides that, although your disabilities are substantial, you would be able to do *some* work at *some* point in the future with the right conditions/support/equipment/adjustments, then you are awarded ESA at the "work-related activity" rate of up to £94.25 per week. To continue to receive this you must attend regular work-related activities.


• If the assessment determines that your NHS-diagnosed conditions are not severe enough to substantially impair your ability to work in an office environment, or that you would only require minor adjustments, you are deemed "fit to work". You don't get ESA at all, and are placed on Job Seekers Allowance (JSA) which is a smaller amount of money with much higher conditionality attached. If you are fortunate, there may be a note on your jobseeking file excusing you from mandatory application for specific jobs that would aggravate or be incompatible with your condition (for instance someone with speech and hearing difficulties may be "fit to work" but excused from mandatory application for call-centre jobs).

Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:

• 7% were incapable of any work (Support group)


• 17% were able to do some sort of work given the correct support (Work-related activity group)


• 39% were deemed to be fit for work and were moved onto jobseeker's allowance


• 36% dropped out of the application process


• 1% of applications were still in progress

Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".

This is simply not true.

The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!

To apply to be assessed is not "faking".

To have a level of impairment that falls just short of the ESA bar is not "faking".

There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.

To recover from an illness or injury does not mean that the illness or injury was "faked".

There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.

To be too ill to fight is not "faking".

There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.

To return to the taxpaying workforce is not "faking".

A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.

To have alternative resources is not "faking".

Most significantly, there are those who die before the assessment phase is complete.

To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".


I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".

Deserving

A lot of hoo-ha in the UK press at the moment about disability benefits. The essence of the story is that the government reckon 80,000 claimants who have what they consider "immoral" illnesses like drug/alcohol dependency or obesity are a justification for their plans to chuck about 570,000 genuine claimants off the disability benefits on which they depend.

According to the BBC article, the Prime Minister's position is thus:

The prime minister denied the government was stigmatising people who were genuinely ill but said the public believed recipients should be "people who are incapacitated through no fault of their own".

No fault of their own, what a strange concept. Does the man intend to start assessing not only the practical limitations of a person's condition, but also the degree of fault involved?

He continues:

"But there are some who are on these benefits who do not deserve them and frankly we are not doing our job looking after taxpayers' money if we do not try and make sure these people go to work."

Benefits are not given based on being deserving. They are given based on need. Going to work or not isn't based on being deserving. It's based on ability. An idiot who drove while high/drunk/ill/tired and smashed up his car and his head so badly that neither will ever function again is probably not considered very "deserving", but his needs will be pretty high and he's unlikely to work again. A young fireman who lost a leg while saving a helpless baby from a burning building is about as deserving as they come, but his needs, while substantial, will be easier to adapt for, and with a relatively small amount of equipment and support the chances are he will be able to do some work.

I wonder... if someone were declared Fit For Work despite a serious health condition, and in the course of making the effort to keep up with the Mandatory Work Related Activity requirement of JSA, their condition permanently worsened to the point where even the DWP and ATOS accept that they are too ill to work - would it be their fault for not saying "I can't do this," and risking having their JSA stopped?

Even taking the sort of example that I think the government mean, it's worrying. Let's imagine, for a moment, that we have a claimant, an alcoholic, and that his alcohol dependency didn't evolve as self-medication for a pre-existing but untreated mental health condition. Let's accept the government assumption that he really did skip gleefully out of the careers office at school saying "I've got a better idea, I'll get pished and the taxpayer will take care of me, bwahahahahaha!" Fixed this in your head? Good.

Now we're twenty years down the line, he has no friends and family left apart from other alcoholics, no work history, very few self-care skills, and all the physical and mental effects of long term alcohol abuse, which if you're not too squeamish you can look up for yourself. There are very few jobs that such a person could do, and even fewer employers who would take such a person on. Then what happens?

Cameron's despicable lie is that his ideal outcome involves people with dependency issues being treated and then helped to find jobs. That will never happen. It is far too expensive, and without wishing to sound defeatist, in many cases it's an impossible outcome.

We could put him into a treatment programme - one that isn't dependent on turning up sober (unlikely), and that won't send him back to his bedsit and alcoholic pals to undo all the work that has been done (so we're looking at an open-ended residential placement - unlikely, and extremely expensive). Then once he's sober, he'll be allowed to access NHS treatment for the underlying mental health conditions that will have developed (unlikely and expensive) and the physical damage as well (amazingly expensive). We'll have to hope that during those years - yes, years - the DWP don't choose him as an easy target and put him under so much pressure that he cracks and starts drinking again. Eventually, after many years of intensive treatment, a lot of money, even more hard work, and a dollop of luck on the side, he might be able to re-enter some sort of employment for a few years until he (a) retires, (b) dies of the irreversible physical damage, or (c) falls off the wagon again.

Cynically speaking, and please don't think I'm advocating this, it is in fact cheaper to allow him to quietly drink himself into an early grave without intervention.

Cameron might talk up "treatment" and "employment" but until we see actions to that effect - boosting rather than cutting the support projects* - what he really means by "getting people off disability benefits," is saving money by consigning them to the lower unemployment benefits.

The benefits system is supposed to be the last safety net. It does not provide a luxury lifestyle, it doesn't try to improve matters, it merely attempts to go towards providing what has been defined as the minimum amount of support necessary for that person to live in conditions that can be considered acceptable for a human being. Reducing that support does not propel people into sustainable jobs, it just makes their lives more difficult and in many cases perpetuates their problems, or in a few very sad cases, hastens their deaths.

*Yes, the article speaks of a £580m investment. However, this is from "private and voluntary organisations", eg not the government, and frankly it's a drop in the ocean compared to the cost of effective long-term treatment and support for that many addicts.

Stuff going wrong

As you can probably tell from the sparse posting, I'm not doing amazingly well at the moment.

Despite that, today was a gloriously sunny day, and I went into town fully intending to make the most of it. I had a lovely picnic lunch by the river in the park, then I went into town, planning to drop in on the shop that we had booked to do our balloon decorations for the wedding, because I figured they were a likely candidate to have some other party supplies I wanted.

They didn't.

I know they didn't, because when I rolled up to the shop, there was a big "To Let" sign over the door, and the windows were soaped over, and when I found a gap to squint through, the shop was completely empty apart from a couple of cardboard boxes. Their website had been taken offline, and their phone number just rang and rang and rang.

I can only assume they've gone bust. It's late March. The wedding is in May. I wonder if or when they were going to tell me.

So, if anyone can recommend a balloon decoration firm in the Warwickshire/West Midlands area, reasonably priced, who might still have availability for a Saturday in May, that would be helpful. Yes, I can JFGI, but I thought I'd ask for personal recommendations first.

I had a semi-fruitful search for the additional party supplies I was looking for - as in, I found some, but they were quite a bit more expensive than I could justify. Scratch that idea.

I got a cup of tea, which helped, and then started to make my way back to the other end of town to be picked up, and that was when I realised that one of my Awesome Wheels had a flat. Happily, since I was being picked up anyway, I was rescued within the hour - unhappily it's a real flat, pump it up and you can hear the air hissing out, rather than just a bit of a drop in pressure. Tomorrow I'm off to see the chaps at Leamington Shopmobility to find out how much it will cost to sort out.

I'm trying to focus on the positive - I had my lunch in the sun by the river, I did get rescued, Shopmobility will be able to get me mobile again one way or the other, and at least I found out about the balloon place now rather than in six weeks' time - but it does feel like it's been rather a crappy day.

To err is human...

... but if you do it on DWP forms, you can expect a fine.

A £50 fine, to be precise, although that's just a starting figure. It could be as much as £300.

Apparently the point of this fine is to get claimants to take "responsibility" for their claims, because "I have to fill in this form right or I won't have any money for rent, bills or food" doesn't have enough impact on your life to make you take it seriously. Or something.

Leaving aside the class war bit where a bunch of millionaires (who make plenty of "mistakes" in their own benefit claims and consider £50 to be the cost of lunch) are imposing these fines on DWP claimants who are, for obvious reasons, some of the poorest people in the country for whom £50 is two weeks' groceries or more...

I'm reasonably bright. Not exceptionally so, but I have my selection of higher-tier grade GCSEs including English and Maths, I've been able to read and write since before I started primary school, most of the jobs I've held have had some sort of administrative element. I should be as well-equipped as anyone to fill out those forms correctly, and I have a distinct advantage over many claimants who are less academically inclined.

And I have made errors on my claims.

The first one, was when I first got sick and lost my job. Let's set the scene. I'm in my early twenties. I'm sick, so sick I cannot work, and more or less confined to bed so that I can manage the big bursts of effort needed to go out (I haven't yet been taught about pacing). I don't yet know what's wrong with me, so I'm scared. I have no income and the Jobcentre have given me three forms. The biggest one is for Incapacity Benefit. The next biggest is for Housing and Council Tax Benefit. The smallest - which is still some thirty or forty pages - is for Income Support, which I am told is a "safety net" in case my Incapacity claim is rejected.

Bear in mind the reason for my claim was that I was too sick to work in my mostly office-based job. I had something symptomatically akin to 'flu. I was not in a top form-filling state.

I worked on the forms as best I could. By the time I got to the IS one, time was running out, but I did my best and felt quite proud of myself for finishing it all within the deadline.

My mistake? In the Pensions section. Having ticked that no, I was not in receipt of any pensions, I was told to go to the next section of the form. So I skipped over all the questions about what type of pension do you have to the next section of the form, About Other Benefits. What I missed, was that "War Pensions", although tacked onto the end of "Pensions", was in fact a section in its own right - a one-inch strip with the single question are you in receipt of a War Pension and Yes/No tickboxes. The form was sent back to me, red-penned and with a stern letter of admonishment.

I've also made errors on my DLA forms before now, again usually at the level of missing a tickbox, although thankfully I've always caught them before sending.

The BBC article says:

The proposals also reveal that the government assumes there will be very few appeals against these fines.

Well, yes. If my incorrectly completed form and nasty letter had also included a £50 fine, I certainly wouldn't have had it in me to argue the toss, because I was too sick to do so, and THAT was the reason why I was filling in the forms in the first place.

That's the thing about benefits. You claim them when your life gets to a desperate stage. You're sick, perhaps terminally so. Your spouse has emptied the joint account and run off with So-and-so from Marketing, leaving you with a broken heart, no money and two kids who want to know where Mummy/Daddy's gone. You've finally managed to get up the courage to get out of a violent and abusive relationship even though you took nothing with you other than the clothes you stand up in. At the very least, you've lost your job. You're stressed. You're upset. You're running around trying to improve your situation and get back something which is recognisable as Your Life, whether that means you're attending countless hospital appointments or applying for countless jobs, and on top of this, the Jobcentre have presented you with over a hundred pages of forms to fill in?

And while we're at it, let's not forget the cuts to legal aid and the closures of Citizens' Advice Bureau offices which will make it even harder for people to get help filling in forms or conducting appeals. Nice one, George. Withdraw the support, thereby increasing the rate of mistakes, then charge people for those mistakes on the basis that they'll be unable to argue. It would make a wonderful Dilbert cartoon, if only it weren't targeted at real and vulnerable people at their time of need.

Minor mistakes are inevitable when people in these circumstances are filling in these forms. Fining people who can't afford to pay but aren't in a position to defend themselves, is appalling.

One Month Before Heartbreak

This post is rambling, but that can't be helped. There's just too much to cover.

One Month Before Heartbreak is a blogswarm to try and raise awareness about the consultation on DLA reform, which ends on 14th February. I'd like to encourage anybody, disabled or otherwise, who is bothered by these reforms, to join in.

This post from the Broken of Britain explains a bit more about it, or if you're feeling brave you can download the official DWP consultation document from the DWP website.

The short version is: DLA is a benefit paid to long-term disabled people with significant care and/or mobility needs. It is paid regardless of whether or not a person is working, in recognition of the fact that the expenses of disability are non-negotiable - to give just one example, a working disabled person who finds their budget is tight is probably unable to save money by choosing to get rid of their car and walk places.

The coalition government intends to rebrand DLA as PIP (Personal Independence Payment). As part of this rebranding exercise, the qualifying criteria will be shifted with a stated aim of reducing the caseload by 20%.

As we've looked at before, benefit fraud is only around the 1% mark, and for DLA it's even lower, at just 0.5%.

This means that there's about 19% of the caseload (that's 570,000 people) who are genuinely disabled - not just that, but disabled enough to pass the already stringent tests - and legitimately claiming help with the unavoidable costs associated with disability, who are suddenly going to find themselves up a rather nasty creek.

We don't know who's going to be "safe". The document talks about continual reassessment (at great expense to the taxpayer and great profit to ATOS) even for people with lifelong and incurable conditions.

It talks about withdrawing support from people who use wheelchairs independently on the basis that since the DDA, the whole country must now be fully accessible to wheelchair users and thus there is no additional expense and support is no longer needed. The fact that many of those wheelchairs were purchased using DLA is not properly addressed.

It talks about introducing not just more restricted residency rules, but also rules about "presence" (ie attending regular meetings at the Jobcentre, a far from easy task for a disabled person) to bring it in line with other income replacement benefits and encourage people into work. Except DLA is not a sodding income replacement benefit and has bog-all to do with whether or not a person is working! And what if you are working? Will you be expected to take time off to attend your DLA interviews? Will your employer be expected to just suck it up that you are unavailable?

How am I affected personally? If it hits me, I will no longer have any personal income beyond my part-time self-employed earnings, and as I've already admitted, my business income after business expenses does not cover even the most minimal costs of living. Without DLA, not only will I be dependent on Steve to meet our combined bills like rent, council tax and electricity - I will have to go to him with my hand out for most of my clothes, and when I need a taxi to a medical appointment, or to buy a new prescription prepayment card, or replace my mobility aids.

That's not the point, though. At least there is someone in my life who will, in a crisis, fund the essentials of life. Many people are not so fortunate. They don't have anyone to help them out, or worse, the person who helps them may easily become resentful of the extra costs and start withdrawing support.

Finally...

The single thing I have done in my life which has saved the Great British Taxpayer the most money was getting together with Steve. All of a sudden, they no longer had to pay my housing or council tax, and the care I was deemed to need was greatly lessened by the fact I was living with a non-disabled adult. Then, thanks to the support and stability Steve gave me, I was at last able to get a part time job, which meant I was no longer claiming Incapacity Benefit or Income Support, either, which meant I was no longer entitled to free prescriptions or dental care, nor could I claim back costs of transport to medical or DWP appointments, and of course I was now paying in tax and NI. I still cost the system money, true, in the form of my DLA, the Access to Work scheme, and my little bit of social care. But this is much, much less than it cost to keep me alive as a single person.

I would not have been able to develop this relationship and thus become a working member of society without the independence DLA gives me.

It's not something that's going to persuade the coalition, but the fact remains - a non-disabled person might willingly move in with a disabled partner who is independent and only increases the food bill, but they're not so likely to take on someone with higher than normal expenses and no income at all.

I apologise again for the disjointed nature of this post, the probably appalling grammar, and the fact it's a bit late. As usual for winter, I don't have an excess of spoons right now and I'm using up most of the energy I do have on frivolities like eating, washing, work, and my duties as an employer of PAs (more on that another time).

Cllr Simon Button

I've been meaning to post this for a while but I kept looking at it hoping I'd imagined it. This is a scan of the front-page article of a local town council newsletter. It's the "winter 2010" issue and was delivered in mid-November.



The article complains that nobody has come forward to help Cllr Button to organise a local Fun Day. In many ways it's like every other self-important council newsletter you ever read. The bit that stands out, though, is the second paragraph on the second column, reproduced here verbatim:

"It is very sad these days that the old Winston Churchill philosophy still stands - "So much is owed by so many to so few". It seems that everybody wants these events, but nobody is prepared to help out. How sad!"

Yes, Councillor Simon Button draws a parallel between the organising of a tiny local "Fun Day" which entertains a few people for an afternoon and raises a small amount of cash for local charities... and the ultimate sacrifice made by thousands of soldiers in WWII as they fought, with their lives, to save not just the UK but the whole of Europe from the Nazi regime.

I'm not big on the politics of war but even I'd consider that kind of comparison both inappropriate and grossly offensive, especially when written for publication by a town council and even more especially when aired in November, at a time when the nation honours those who died.

Abandoned claims

Woke up this morning to see that a certain right-wing rag has surpassed itself in the propaganda it chooses to spout about ESA.

I'm not going to link to it because it will only upset me and every reader.

The headline asserted that 75% of those who claim ESA are found "fit to work".

This was then broken down that 75% of those who claim ESA were either found "fit to work" or abandoned their claims before testing was complete. The article did not split these figures. It did not differentiate between the Support (never likely to be able to work) group and the Work-Related Activity (may, with help, be able to do some jobs) groups of ESA - from reading the article it seems that they are only counting those who meet the Support group test criteria as "genuine". It proposed that the abandonment of a claim meant that the claimant was clearly "trying it on".

Legitimate reasons why an ESA claim may be started and then abandoned:

• The claimant dies.


• The claimant gets better, be it a miracle or a new treatment or being bumped up the waiting list for surgery or getting private treatment.


• The claimant, having lost their job, is offered support and a place to stay by their parents or their children. They decide to abandon their claim and re-start it once their move is complete.


• The claimant looks at the highly personal questions on the form and says "you know what, I'll never be this desperate for money, prostitution is less demeaning."


• The claimant wins an insurance or compensation payout that enables them to survive without benefits.


• Due to their condition, the claimant is unable to understand the importance of filling in the form or unable to remember that the form needs doing.


• Due to their condition, the claimant is unable to fill out the forms - perhaps they have a brain injury or learning disability and cannot read and/or write, perhaps they have issues with their hands and cannot physically hold a pen, perhaps they have a mental health condition that causes panic attacks every time they approach the form.


• Due to their condition, the claimant is unable to access support to fill in the forms - for instance they are unable to go out, they do not yet have formal Social Services support, and their CAB is overstretched with permanently engaged phone lines (I have personal experience of urgently needing to get to the CAB but having to wait until support is available).


• The claimant completed the form, but due to their condition, they are unable to travel to and from the medical examination centre alone, and they are unable to secure help and/or funding to allow them to attend. Because their level of impairment does not exist until ATOS say it does, this is not a valid excuse for non-attendance. (I had this issue with my DLA a few years ago).


• The claimant is sitting at home with the heating off, desperately waiting to hear back from the DWP about their claim, which the DWP has lost.

If it was any other publication (I hesitate to use the term "newspaper") I would be shocked and appalled by the deliberate lies and misinformation being used to attack disabled people. Unfortunately, I'm getting used to it, and so is everyone else, and all these little drops of poison are being allowed to drip on into the public consciousness unchallenged.

If you want to imagine the future...

In my last post I spoke about how, thanks to my particularly fortunate circumstances, I should not be too severely affected by the proposed cuts in the Coalition's Comprehensive Spending Review.

I wrote that in the same frame of mind as a parent might hug their warm, safe, living children after hearing about a fatal school bus accident. It's okay. I'm okay. The bad things happened to someone else. It's terrible, but it was someone else.

That emotion dealt with, it's time to acknowledge that I am not so unaffected as I would like to believe. This is difficult for me to post as it involves hard truths not just about my condition but also my business and my relationship, but Bendygirl's video has persuaded me that it needs to be said.

Hard truth #1 is that I am dependent, physically and financially, on my partner. I contribute to the household in the ways that I can, but ultimately, he's providing for me.

I work, yes. I worked for a company for just over two years and now I've been self-employed for about eight months. I have a growing base of satisfied customers, I pay National Insurance, I will be doing a tax return, and each month, the business expenses are met with a bit left over. Go me!

Unfortunately, much as I hate to admit it, hard truth #2 is that the bit left over isn't a very big bit, and nor were my earnings while I was PAYE. It's always been well under £8,000 per year. I simply can't work very many hours and I'm not in a position to raise my rates.

So the long and short of it is that if my relationship fails, meaning that I am no longer housed and supported by someone else, I will have to wind up the business and seek help from the state until such time as I am able to find employment that pays enough for me to live on without demanding more than I am physically able to give.

A lovely big squishy truth now - my relationship is fine. That's why we're planning a wedding. Excuse me while I cuddle that truth for a little while.

I do feel, though, that part of what makes the relationship fine is that we both know we could leave at any time. I'm not with him just because he can pay the bills. We started our relationship in the knowledge that we can both survive as single adults - we choose to be together, every single day. It's not nice to think of exit strategies, but at least I knew that if something unthinkable happened - for example, if he were to hit me or to announce that he was leaving - I would be able to get a taxi to a friend's house and then start phoning Social Services for support. I would be able to claim money for food on an emergency basis, I would have a few hundred quid in savings to see me through for the first week or so, I would have help to apply for income replacement benefits, and thanks to my DLA status I would have to be put in appropriate accommodation.

This is no longer the case.

The Coalition are aiming to reduce the number of DLA claimants by 20% (600,000 people). That's all very well, but the rate of fraud on that particular benefit is just 0.5% (about 15,000 people), which means that there are 585,000 people who are legitimately claiming, whose conditions have not changed, and yet who are going to get kicked off a benefit which is frankly a lifeline. Believe me when I say the bar is already set quite high for who can and cannot get DLA - it's not awarded for minor illnesses. Remember the official disability facts and figures? There are 11 million disabled people in the UK and yet only 3 million of them get DLA. Long-time readers will remember all the trouble I had with my DLA appeal a couple of years ago. Spending the best part of a year trying to fight the system while also trying to cope without the money. It's not to be had for the asking.

(It should also be reiterated that this shifting of the goalposts purely a cost-cutting exercise. DLA has nothing to do with whether a person works or not. Many DLA claimants are in work and paying tax. In many cases, it is their award of DLA that allows them to buy the care and equipment that enables them to continue working.)

If I were to lose my DLA, it's not just the money that would disappear. All sorts of things go with it - daft stuff you wouldn't necessarily think of, like help getting your water if there's an emergency and your street is put on a standpipe, or eligibility for things like Disabled Person's Railcards.

Let's be positive, though, and assume I keep it. Next, I'd need income replacement benefit. This would be ESA, the benefit that is being phased in to replace the old Incapacity Benefit. ESA divides into two groups. One is for people who are never likely to be able to work - mostly people with terminal illnesses with only a few months left to live. This group get full and unconditional benefit for as long as they are ill (in other words, until they die or a miracle occurs). It's a small group - currently about 6% of claimants. The other group is for those who, with support, would be capable of some work, and their receipt of the benefit is dependent on them fulfilling "work-related activities" such as voluntary placements or work experience placements...

Actually that's not quite true. There's a third group for ESA. The third group is those very definitely disabled people whose conditions don't quite fit the boxes. Those with fluctuating conditions. Those who would be considered capable of "mobilising" fifty metres if they had an appropriate wheelchair, even if they do not in fact have such a wheelchair, nor any way of obtaining one. These people are put onto normal Jobseekers' Allowance with all the hoops and hurdles thereof, and drop out of all disability monitoring at the DWP. No specialist support. No reasonable adjustments. Just sanctions if you do not sign on or if you do not apply for enough jobs.

Assume, then, that I would get either work-related activity ESA, or that I would be discarded onto JSA. Finally, I have to find somewhere to live, and this is where it gets really tricky.

First of all, as a person under 35 I would only be eligible for a room in a shared house. Sharing a house is a tricky prospect for a disabled person. You need the people you live with to be able to understand about your disability. You need them to understand, even when drunk, that your mobility aids and assistive items aren't their toys and that you really do need a proper sleep schedule. You need to be able to get help to fulfil your share of the chores, and Social Services do not provide help with housework for people who live with "able-bodied adults". I wouldn't last five minutes.

Of course, you also might need certain adaptations to the property. That's expensive and I doubt councils will fund much of it. So maybe that would mean not having to enter a house-share because it's not physically appropriate. Which means we're looking at temporary accommodation in (a) a hospital or (b) a hotel with an accessible room. It could happen, but it'd be expensive. Perhaps a better solution would be care homes? I don't require nursing care, but it would be a room, and it would be accessible, and the other people would understand my situation.

Heh. Well, yes. That's a solution. It's already a solution for many people. Live in a care home. They remove all your income replacement benefit, and they remove all of your DLA care component, and then they give you £20 a week of "pocket money" to cover anything that's not basic food and bills. Shampoo, conditioner, deodorant, makeup? Pocket money. Clothes and shoes? Pocket money. A laptop computer to enable you to communicate with the world? Pocket money. These things could be considered luxuries, but would YOU employ someone without them?

DLA mobility component is different. People can use that however they see fit. Some people hand it all over and get a leased Motability adapted vehicle. Some people use it to hire or purchase a mobility scooter. Some people use it to cover the difference between what the NHS will pay for a wheelchair, and the price of a wheelchair they can actually use. Some people pool it with others in their care homes to fund an accessible minibus. Some people keep it and use it for taxi fares so that they can do things like, ooh, go into town and sign on or do Work Related Activity as part of their ESA/JSA requirements.

The Coalition intend to axe DLA mobility component for people in care homes. Adapted cars, taxi fares, and in many cases, wheelchairs, GONE. When challenged, the government said that local authorities should be providing transport and daytime activities for disabled people in care homes. These would be the same local authorities who have been told to reduce their spending by 25%...

So if the Coalition's plans are successful, then for the next seven years at least (until I am 35), my choices are to stay with Steve, or to attempt to bounce on a welfare safety net that will be so small as to be negligible. Can I still honestly say that we live together out of choice, when my best case breakup scenario will be either virtual imprisonment in a care home, or living out of a suitcase in a cheap hotel? Ironically, the additional pressure this puts on my relationship only increases the chance of it turning sour. And since neither of those situations are going to enable me to pick up the threads of my life and move towards getting back into employment, it makes me even more likely to remain benefit-dependent for longer.

I say again, for myself as much as for the people reading this, that my relationship with Steve is stable and loving and going nowhere. In that respect I am more lucky than many disabled people who find themselves increasingly dependent on their partners. But one thing you learn with adulthood-acquired disability is that life can change in an instant - I'm scared that the safety net which caught me once, and which I may rely on to catch me again, is being removed.

Cuts

I want to post about the cuts made in the Comprehensive Spending Review yesterday.

I'm not doing so well at the moment, so for the sake of spoons this is going to be short and based on my own experiences rather than linking to statistics and documentation. That in itself is part of what makes the cuts to disabled people so underhanded - we're not all able to fight back in a planned, structured and comprehensive manner.

Personally, at this point in my life, I probably won't be too badly affected for a couple of years. Oh, there are things that I should have that are now disappeared into the long grass, but my extremely fortunate circumstances mean I am not being thrust into heat-or-eat poverty. I know just how lucky I am and I know many others will not be so lucky.

What happened to me was not unusual. One week, I was a reasonably healthy, reasonably fit, reasonably bright young woman with a reasonably well-paid job, reasonable promotion prospects, living in a small but reasonably pleasant bedsit flat and, all in all, living a reasonable life. The following week, I was being sent home from work with what was assumed to be 'flu. Three months and half a dozen failed attempts to return to work later, I was being prepared to accept that my illness might be rather more long-term, and three months after that, my work contract was ended and I was obliged to claim welfare benefits to survive.

I did survive. It wasn't without difficulty, what savings I had were eroded, and I don't know how long I would have kept it up - let's not pretend we lived like princes under New Labour - but I had practical support, an intact National Insurance record, and the wherewithal to challenge the DWP when they cocked up their own rules, and so here I am. I landed on the welfare safety net, but I bounced, and a few years later with a lot of help from loved ones I was able to start earning again.

However I feel very sorry for anyone who goes through that same not-unusual scenario with ESA (thanks to Labour for that) and the cuts proposed by the Conservative/Liberal alliance yesterday. I would not have survived.

The harshest cut? Removing DLA mobility allowance from disabled people who live in residential homes. This is the money that goes towards the difference between what the NHS will pay for a wheelchair and what a suitable wheelchair actually costs. This is the money that pays for taxis to visit friends and family. This is the money that residents pool together to get an accessible minibus for their home so that they can have trips out. I do not understand the rationale for removing it.

Grounded

It's been a glorious month of whizzing about in my new wheelchair. From posting my own letters unaided, to trundling around shops at my own pace, to attending meetings and events, it has been amazing.

Right up until Sunday morning.

I connected the wheels to the charger and, instead of charging, it started beeping at me in a most distressing manner. A flustered few minutes with the manual, looking up the "acoustic signal" in the two-page Error Messages table, revealed that one of the wheels knows the charger is plugged in, but cannot detect a current. Swapping the charger plugs over showed that the issue was with the wheel, not the charger. The wheel must be sent for repair.

Then I burst into tears.

Sounds silly, doesn't it? Until five weeks ago, I didn't have powered wheels, and yet I was perfectly happy. But having grown used to them, the idea of them being taken away was simply shocking. It was almost as bad as the first time I fell over and couldn't get up. A huge sense of bewilderment, frustration, anger... even betrayal, if it's not too weird to use that word about an inanimate object or your own body. And powerlessness. That's a big one.

Technically the wheel hasn't been taken away yet. It's sitting right here in the room with me. A flurry of emails and phone calls has resulted in a "pass the parcel" arrangement, where the manufacturer will send a brand new wheel to the vendor today (or possibly tomorrow seeing as it's already after 3pm), the vendor will check it and courier it on to me, and then in a few weeks' time when a rep from the vendor happens to be in this neck of the woods, he'll take away the defective one. I've been told to keep the brand new wheel, probably because the expense for them of reversing the whole process to move a repaired 24-inch, 11-kilo wheel across the country in order to exchange for what will by then be a used one is not cost effective.

I am really, really, REALLY regretting that I was dumb enough to get swizzed into purchasing the wheels from the big national chair vendor rather than my first choice, the local Shopmobility (not licensed to sell the chair I was assigned, but could have sold me the wheels. It's a long, boring, complicated story). If I'd stuck to my guns and bought from Shopmobility, I could have been down there in a taxi sorting it out face to face by now. But hopefully I've been enough of a pain in the backside to the current vendor that they will come good and I'll have a new wheel in a couple of days.

So. I still recommend the e-motions - frankly, even this one month would have been worth re-mortgaging a kidney - and I cannot wait to get my shiny new wheel, but I'd really suggest being prepared for the fact that it may go wrong, and shopping locally if at all possible.

Edit added one week later, on Sunday 18th July 2010
Instead of a courier with an entire new wheel, they sent a repair guy on Saturday morning. Unfortunately they had only provided him with half the wheel components, and naturally this did not include the half that was malfunctioning. So it looks like I've got another week with no power. Well, either that or going round in circles.