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.

Procrastination... and breathe

Ok, I am admitting right now to all of you that I am procrastinating on the self-employment front.

I will do it and I am making progress. I'm most of the way through my online business course; I have a Marketing Plan and about three-quarters of a Business Plan; I've written a lot of the text for my website. But I'm having to really push myself over every step.

It's not the work involved. The work is not a problem. The trouble is that I have my self-image, my little mental picture of me... and then I have a little mental picture of A Self-Employed Businesswoman... and there's no way I can manage to superimpose the two. I'm not a shoulder-pads kind of girl, you know? That's part of why I'm setting up as an assistant... I keep wondering who exactly I am trying to kid by calling myself a business.

Anyway, there was a major panic this afternoon when my new Business Advisor asked me about my planned start date and told me that the "HMRC definition is once you have set up your website or have got anything with your name on it – i.e. business card, letterhead, leaflet, etc you are in the eyes of HMRC starting to trade," and I went AWOOOGA! because I've been getting ready piece by piece and have, for instance, set up a business banking account and a PO Box weeks ago, but I don't yet have several other important things like insurance or a tax reference number.

Thankfully I decided that if something is causing me that amount of upset, I should seek a second opinion, and HMRC's self-employment helpline allows me to go straight to source. Turns out it runs from when you have the ability to provide your goods or service and are "open for business". So in my case, since I would currently be telling a potential customer "sorry, I'm not quite ready yet," I have not started to trade, no matter how much of the setup I've got in place.

Phew.

However, it has given me a bit of a kick up the bum about the whole thing. As a result of which, I am eagerly awaiting some insurance quotes and doing my best to remember that all I have to do as a first stage is meet the legal minimum requirements - nobody expects me to become SuperBusinessWoman overnight and the shoulder pads are truly optional.

Pass the parcel

So, in my path to become self employed, we were as far as: I need help from Access to Work in order to work, I need a business plan in order to get help from them as a self-employed person. I contacted Business Link (who, as you can see, are a .gov.uk and therefore official) and they referred me to a local business development agency.

The local business development agency said yes, we run free informal courses for people starting up their own businesses, during school hours, locally. Great! Except "locally" is apparently Coventry. To a Normie living where I live, that's £5 for the return train ticket and maybe £2 for buses at either end. For me, it's over £20 each way in taxi fares (big thank you to Warwick District Council for removing the accessible transport scheme).

I'd pay that money quite happily for a one-to-one session with someone who would check that I had ticked all legal boxes for my specific situation - or more importantly, tell me which ones I missed and what to do about it - and confirm with authority that I was ready to start trading. But I don't exactly have it knocking about as spare cash to hazard on fuzzy informal courses that may or may not have any relevance to my business.

Oh, they said.

So they in turn have passed me on to something which might be called the Regional Disability Infrastructure Support Service, or might be the Council for Disabled People, or might even be something else entirely. I'm not sure what this multi-monikered organisation's remit is - whether it's helping with the transport issues or helping with the "setting up a business" issues - but it doesn't matter for now as they can't see me until mid-December.

Meanwhile, I am apparently welcome to use the resources and forum at the website of the Coventry-based business development organisation. The resources are... well, they're very good, nicely laid out, but I am worlds away from their target audience. Here's a small quote from the section on Personal Development and identifying transferable skills that may be of use in your business:

Do you organise yourself, your children and your partner?
Organise the playschool’s fundraising activities?
Act as secretary to the tennis club?
Organise lots of social functions for you and your friends and family?
Cook and shop?
Organise who does what in the local community fair?

In other words, am I a vision of middle-class feminine perfection? Well, no. I have many skills that I use, as an employer of a PA, as an employee of my bosses, as a "customer" of the DWP and Social Services, as a blogger, as an active participant in the disability community, as a friend, as a supportive partner, and as a housekeeper. But I am, in short, not their kind of person, and knowing that makes me wonder how much they will actually help me.

For now, I continue ploughing through pages after page of information that for the most part doesn't apply to me, gleaning out the little germs of usefulness.

Paid time off

I've worked my last afternoon at work, accepted my leaving card and gift voucher, spent a couple of hours sitting in a pub listening to my erstwhile colleagues talk about things that are now a big old heap of Not My Problem, and now I am on paid holiday time for just over two weeks while I wait for my contract end date and my P45.

Today, at about the time I would otherwise have been getting ready for work, I turned the heating on. When I would have been getting into my taxi, I went upstairs and put some nice essential oils onto an aromatherapy diffuser. Then I ran a bath (big thank you to Steve who scrubbed the tub just for this), added half a bottle of bubbles, put on a CD of meditation music, and settled down for an hour's soak that, technically, I was being paid for. Bliss.

Of course there's only so much time you can spend gazing at the bathroom ceiling, so as per the advice given on previous posts, I also contacted Business Link to find out what they could offer someone in my position. I think this was a good move. I now have a name for the type of work I'll be doing - Virtual Assistant - which is much easier than "doing admin and officey stuff from home for people who need things doing but don't have the resources for a full-time on-site admin assistant". I'm being sent an information pack about that sort of work; in the meantime my details have been passed to a much more local Business Development Agency who are affiliated with Business Link and should be able to provide more specific support. Above all, they will help me write up a Business Plan, and with a Business Plan, I can get support from Access to Work as a self-employed person, and that opens up all sorts of possibilities.

I'm scared as hell, but apart from that I'm feeling really very positive about the whole thing.

Meanwhile I just keep listing in my head all the things that I don't have to worry about any more. I'll hopefully stop having nightmares where stacks of CDs fall on top of me. I can grow my fingernails, and paint them, without them getting broken and chipped on tape dispensers and dodgy shelving. I'll hopefully be in a lot less pain. I'll be in charge of whether or not I have music on, and if so, what sort of music, and at what volume. It's going to be great.

There is no pause button on my life.

I feel that this is an appalling oversight on the part of the manufacturers. Still, what do we do?



So, I've resigned from my job and the final details have been ironed out. I officially finish at the end of this month, but I have quite a chunk of annual leave left to use up so my last actual working day is Tuesday 10th November.

My handy printout from the nice lady who does the payroll confirms that I only had one and a half days off sick in the last 12 months, which is way below average, even pro rata, and should be a jobsearch asset. I turned myself inside out to keep it that way and I'm so glad I didn't have to screw it up at the end by getting signed off.

It still stings quite a bit that leaving the job wasn't entirely my choice - I could have stayed another few months but would have been trying to work (a) without any additional support or equipment to deal with the increased demands, and (b) in the explicit knowledge that I was not wanted there. But I am still convinced that my decision to not attempt to drag it through the courts is the right one. I would rather use my energy on dealing with the necessities of life (considers another YouTube clip, decides against it) and have a bit left over for, you know, enjoying myself.

I have managed to complete my draft answers for my DLA form, which this time round is just over 19,000 words. It saved a lot of typing that I already had my answers from last time in electronic form, but it wasn't just a straight copy/paste job because they've shuffled the order of the questions, and merged some questions and split others up differently. Although my needs haven't changed, I also had to change some answers to account for factors like the PA and the social worker that I didn't have last time - for instance, whereas last time I wrote "I would like to go swimming, the help I would need for this is XYZ," this time it was more "When I go swimming my PA helps me with XYZ." The help I need is the same but the context has altered and the form must accurately reflect the current situation.

I've got all of my Social Services paperwork up to date as well, which is a relief after the collision of two separate threads of PA issues and the Monitoring Return. Better yet, the Monitoring Return was approved without query and I don't have to do another one until January.

My Access to Work advisor got back to me, and says that although I'll have to re-apply for support with my job as I switch from PAYE to self-employed, since I'm on the books and my needs haven't changed it should go through quite smoothly. I've prepared my "final" forms for my transport support, ready to be stamped and signed by my soon-to-be-ex-manager on Tuesday.

So, all that stuff dealt with, I think after Wednesday I can properly apply myself to researching things like Business Link and getting everything in place to embark on the self-employed adventure in December.

One question. I hear that when I set up as self-employed, I have to give my 'business' a name. Apparently many people use their own names, but I don't really like my full name and I'm not sure I want it to be google-searchable either. I'll probably end up with a generic [name of business advisory service][client number] combo, but if anyone has any ideas I'd be interested to hear them.

Second Job

Yes, that's right, in these darkened times when there are many more jobseekers than jobs available, I'm being a greedy git and deciding to have TWO at once.

Okay, so they're both part time - the existing one at 17.5 hours a week and the new one at somewhere between "a couple" and "a few" hours - and even the combined pay wouldn't be enough to lift anyone without financial support from a partner out of benefits dependency - but nevertheless.

As you've probably guessed, precise details are at a hazy stage with a start date of "once the paperwork's done", but I've filled in my bit of a P46 and been shown around the system I'll be using so I don't think I'm jumping the gun in considering the job to be a definite thing.

It's very flexible and it's mostly working from home, data entry and envelope stuffing and suchlike, which is why I'm able to take it on. There's no way I could do more hours in my main job, since by the time I crawl into my taxi at the end of an afternoon I am utterly shattered, barely capable of talking, and wincing at every pothole and speedbump on the way home. But the idea with the new job is that once I've got home and had a couple of hours to rest and get a bit of dinner inside me, then if I feel up to it I'll be able to sit up and do anything between twenty minutes and two hours of additional work. And if I don't feel up to it, or if I have something else to do, then I won't. I can stop the clock for a break whenever I need to, and I can take that break in the quiet and comfort of my own home which is so much more effective than trying to screen out the noise and busy-ness of a hectic office. I won't have to force myself to keep going until a taxi arrives, either, which will be nice.

Of course, the first person I called to tell was my mother... of course, her immediate reaction was a comparison to Sister Dearest and her Fabulous Career*. Admittedly I know by now that any phone call to my mother has to include several minutes listening to the praises of SD and her FC being sung, but on this one occasion I really could have done without it - I wanted to play the game where we at least pretend to be proud/congratulatory/encouraging of my hard work and minor accomplishments.

Happily, Steve and my friends are more than capable of bolstering my self esteem when it flags and did a sterling job of being pleased for me. Even my current boss congratulated me, once I'd assured him that it was a second job and I wouldn't be leaving his company (his immediate reaction in the seconds before I'd fully explained that bit thoroughly reassured me that I am valued within the workplace).

I've got a desk set up at home now, complete with two desk tidys, a coaster, and my Sunshine Buddy. I have a wireless mouse but I need a mousemat as it's a glass-topped desk. Well, I say need, it's possible to get by just using a bit of paper. But I'd like a proper mousemat. In fact in an ideal world, I'd like to try one of those ones with a padded bit for your wrist but they seem a bit pricey and I'm not sure how much difference they make. If anyone has any input I'll be happy to hear it.

Access to Work are being their usual cagey selves - you can't determine what help you may or may not be able to get through them until you're fully signed up to the job, have a start date, and have completed an application for support - but I've been told that I am "eligible to apply" for support with this job as well, and have two separate support packages running concurrently, although they'll probably be handled by the same person. I'm hoping to get the same deal on transport (I'll be working from home but I will have to go in every so often) where I pay an amount equivalent to a bus fare, and AtW top it up to a taxi fare because I can't use a bus. Equipment-wise, I'll need to have a good think - as a rule, they'll provide anything that is (a) to be used solely by me, AND (b) an item or a specific version of an item needed because of disability-related reasons. So for instance they won't supply biros but they might supply any of these for someone who has trouble with their hands. Ideas?

* Fabulous Career = working for several large national chains of bookies, encouraging gambling addicts to indulge their addictive behaviour. Since she falls in the narrow margin where she can write her own name but is unable/disinclined to get a different job, she has over the course of several years worked her way up to local management. While I realise I'm hardly a high-flyer myself, I can't get quite as excited and impressed by this as my mother seems to.

Biscuits

When I started work, okay, I was on minimum wage, but I had something that Steve and his high-flying techie friends didn't have. An office kitchen with a "help yourself" policy. While none of the people with 'proper' jobs were really about to take an 80% pay cut and relinquish their daytime internet access just for free tea, coffee, and biscuits, it did make me feel a little bit better. I had a Perk. I didn't have to drink hot coloured water from a plastic cup and pretend it was tea, and I never had to thump a vending machine which had eaten my last twenty pence piece but not dispensed my goodies. No tokens, no cards, no forms, no systems, no unspoken implication that given half a chance the employees would undermine the entire company with our gluttony... just a decent cuppa and a biscuit whenever I felt I wanted one. It must not be underrated.

Then the unthinkable happened. A couple of people went on diets, and the person who had been the most influential in keeping the biscuit cupboard stocked left for another job. I would go to the cupboard and find no biscuits - or worse, I would find half a packet of Custard Creams, which I detest. For the last few months, I've been taking my own snack in my handbag, which isn't a problem, but I did miss my mid-afternoon Perk of biscuitty goodness.

But yesterday! I don't know what compelled me to look in the cupboard, but I did, and lo, there was half a packet of Custard Creams, and... a pristine, unopened packed of chocolate digestives. Dark chocolate digestives. My favourite.

Could be it's the drugs talking - I am having a bit of a time of it and taking more than I otherwise would this week - but that packet of biscuits filled my heart with joy. I suddenly felt a lot more positive about all sorts of things.

Isn't this nice?

Things are ticking over really well at the moment.

The main Thing I want to tell the world about is something I've wanted to say for a couple of months now but haven't dared in case it turned out to be temporary. But it's looking more and more permanent, so here we go: I am no longer actively seeking different employment.

The reason for this is that my role at work has been sort of shuffled. In a good way. The company I work for are doing really quite well at the moment, so we have a lot of orders being placed, lots of stock coming in and packages going out. The 'role creep' kind of started with an increase in the number of packages that had to be sent Signed For or Special Delivery, so instead of spending five minutes a day sitting in the office carefully writing addresses into books and putting barcode stickers onto packages, it was more like half an hour or so. Then we got an arrangement with ParcelForce for the increased numbers of high-value overseas packages, and of course such packages often require more detailed customs declarations than a single CD does, as well as the information having to be correctly entered into the online system. From there it was a short step to assigning me other "office based" tasks - the increased volume of orders and stock throughput means there's a lot more admin to be done and much of it doesn't require a knowledge of classical music, just a reasonable ability with computers and some basic admin skills, which I've already got.

Which brought me to a stage where, of my average four and a half hour working day, I spend about one hour doing ParcelForce and Signed For packages, two hours doing other admin tasks in the office, one hour helping pick and pack CDs in the Despatch room, and half an hour sorting out the documentation for the mail sacks to be collected by Royal Mail at the end of each day. I have a variety of tasks, some more challenging than others, all of which I am capable of performing, and some of which I quite enjoy (for a given value of workplace enjoyment). I am working for a company who took me on as a disabled person (but not because I was a disabled person) and have been 100% supportive of my needs for the eighteen months I've been there. I get to use my brain and yet I also get to wear jeans and trainers to work.

I was applying for other jobs because nice as the company was I didn't want to spend the rest of my life mindlessly putting CDs in boxes. Now it appears I've won the best of both worlds.

And then, cherry on the cake...

One of my regular tasks is to deal with "deletions". This is when a customer orders a CD that we don't have in stock, so we ask a record label supplier to send us a copy, and then they tell us that the title has been deleted from their catalogue and they don't have any copies left. My job is then to remove the deleted title from our system, remove the deleted title from the customer's order, refund the customer's credit card, and email the customer to apologise and explain what has happened. It's a disappointing email. Which is why I find it surprising that a healthy proportion of customers actually bother to email back. Not in a ranty way either, just along the lines of "okay, thanks for letting me know," which for some reason makes me feel really happy - I think it's simply the idea that people have been bothered to be so polite.

Two Ticks

At this time of economic gloom and woe, I am almost embarrassed to report I have landed another job interview.

I am confident that I deserve this interview as I wrote (well, typed, thanks to the accessible glory that is an online application) next to every disability-linked question and every 'if you are shortlisted for interview'-linked question that I was NOT requesting an interview under the Two Ticks scheme* and did NOT want to be shortlisted on the basis of my disability.

My only concern is taking the time off from my existing job to attend the interview, as it's on a day when we tend to be both busy and understaffed at the best of times. I'll have a word with my manager today. I suspect I'll end up stashing jeans and trainers at work the day before, so that I can go in straight from interview and change out of my suit there.

I realise this is really quite a smug position to be in.

*The Two Ticks Scheme

This is a scheme that quite a few large employers sign up to, recognisable by a symbol of two ticks encircled by the tagline "positive about disabled people". The part of it that is relevant here is a pledge that if a disabled candidate has shown on their application that they meet the minimum stated requirements for a job, that candidate gets an automatic interview. This helps, because a lot of disabled people wouldn't make the first cut due to things like:

- one or more long periods of unemployment
- previous employment mostly in an entirely different field
- an unusual pattern of education
- employer prejudices

... the idea being that once a person is in an interview setting, they can better explain and show how they are the right person for the job, how their nonstandard CV is proof of their ability to adapt to situations and overcome obstacles, how they are pleasant and competent individuals who will be an asset rather than a burden to the existing team, and so on. Or indeed not, as the case may be. Either way, the person gets interview practice, hopefully some interview feedback so that they have an idea where they should improve things, and a greater chance of getting a job when their CV might otherwise have gone straight into the bin.

Which is all great, but there's a flipside. Going to an interview takes up time, energy, and money, three things that your average disabled job applicant is not rolling in. You have to get your suit cleaned and your shirt ironed, you have to research the company, practise some answers for likely questions, arrange for a lift or pay for the taxis there and back, you have to deal with spending the 24 hours beforehand feeling utterly queasy with nerves.

If you already work, then it's even worse. You have to have that uncomfortable little discussion with your boss that (s)he might be about to get asked for a reference. You have to worry about whether the knowledge that you applied for another job is going to adversely affect you when it comes to managerial decisions about promotions or redundancies or pay cuts. You have to book time off work, and if that's not possible and the interviewers can't offer a different day, you have to start weighing up abandoning the interview vs throwing a sickie...

All of which might very well be worth it, if there's a genuine chance of getting a decent job at the end of it.

Unfortunately for a Two Ticks candidate, a job will (and must, and should) always go to the person most competent to do that job. If you meet the minimum criteria and turn up for a Two Ticks interview, and five other people (disabled or otherwise) are being interviewed who meet and exceed the maximum criteria, well, you're never going to get that job.

Also unfortunately, nepotism is alive and well and probably always will be. I have seen a couple of jobs where the position was publicly advertised (because it's a requirement of the company policy), the disabled candidates were interviewed (because it's a requirement of the Two Ticks scheme), and then everybody had to try and not look surprised when the position went to, at best, an internal candidate, and at worst, the repugnant offspring of the managing director.

In such situations, the Two Ticks candidate has NO chance of getting the job. All (s)he gets is a lot of expense and hassle and a smidgen of interview experience. Which is fine if interview experience is what you want... but personally, I'd rather only attend interviews where I know I have a reasonable chance of being the one who gets the job.

Edited for grammar 22:27 12/02/09

*sniff*

...uuurgh. I have Additional Lurgy in the form of a cold.

Happily it's not the rotten sort of headcold that wimps try to insist is "flu". Just a cold that is a cold that is a cold, with a sinus-y headache, a sore throat, and a metric smegload of snot.

*GRONK*

...uuurgh...

So yeah, another job in the paper I'm thinking of going for. It's a receptionist/admin assistant position, 15 hours a week, for a children's charity. BUT, I have to phone the Mr Director for "an informal chat" about the position, and right now on the phone I sound so icky and goopy and contagious that he'd probably want to autoclave the phone after speaking to me, rather than encouraging me to send in a germy application form. So it'll have to wait a couple of days.

In better news, I'm on track to become an employer myself - my Direct Payments are ready to go just as soon as I've advertised for, interviewed and selected a personal assistant. For this I have sought assistance from the Rowan Organisation but if anyone's got any top tippery they care to share, the comments are open as usual.

2008 - A Roundup

I did this last year so I might as well do it this year too. Even though this time I haven't had any major life changes like moving house or getting a new job, it's worth bearing in mind that Steve and I started 2008 with a spirited attempt to blow ourselves up so the entirety of the last 12 months has been something of a bonus. It's also slightly disturbing that my first complete 12 months of post-getting-ill paid employment has been so centred around the benefits system.


January
In contrast to last year, my birthday was a bit of a non-event, consisting of me buying myself some cake to take into work, and Steve getting a card for me while I was out. Over the next few days things improved. Full of positivity about life, I started an attempt at some self-administered Graded Exercise Therapy which lasted all of about two days before Steve begged me to stop it and I felt cruddy enough to acquiesce. The extra pain, faints, weakness and cognitive difficulties from those days lasted almost two weeks.

February
February saw the Department of Work and Pensions Secretary Peter Hain leaving his position after a row over his failure to disclose donations for his failed attempt to become deputy leader of the Labour Party. His defence consisted basically of trying to prove that he was incompetent rather than a fraudster, a defence the DWP refuses to hear from its "customers" but apparently finds acceptable from its management. His replacement, James Purnell, started gleefully outlining "reforms" to the welfare system, based largely on a report from a City banker who had spent three whole weeks studying the system before spouting a lot of inaccurate data largely based on his own personal opinions. I got very upset about this as I was struggling with work and an overwhelming awareness that if I didn't cope, I would have to throw myself on the mercy of the "reformed" system.

I was also struggling with a Tax Credits cockup from several years ago, which makes it even more baffling why I decided to re-apply for Disability Living Allowance.

March
I got my forms finished, mostly by typing it up rather than trying to fit the ins and outs and variations of my day-to-day difficulties into the boxes.

"The total was 48, yes, forty-eight pages. The word-count was 26,019. That's twenty-six thousand and nineteen words. That's more than the entirety of my GCSE English Language and Literature courseworks."

My new GP confirmed that she would be supporting my DLA claim, and several people kindly wrote supporting statements about their direct experience of how my condition affects me. Just as I got the DLA bundle completed and sent off, the Tax Credits people started up again...

April
While the ball rolled on the Tax Credits and DLA issues, I wrote the most popular blogpost I have ever written... The Gorilla Theory. It gets linked to all over the place and people keep telling me how much it has helped them. I'm very proud of it.

Five months after I had alerted them to the issue, the DWP sent me an amusing letter about how they had paid me too much money when I started work (they forgot to stop putting my Incapacity Benefit into my bank account despite me asking nicely) and now they wanted it back. It was amusing because even though the error was entirely theirs, the letter implied that it was my fault and I'd actively claimed the money on purpose and threatened me with the full weight of THE LAW if I did not arrange to repay the money immediately.

May
As is becoming usual, May started with Blogging Against Disablism Day. The hot disability topic was still the welfare reforms but I opted to write some musings about equality and difference:

"Equal does not mean identical for the same reason that different does not mean inferior, or, for that matter, superior."

I started to think about my career direction (or lack thereof) and Steve scared the hell out of me by taking half a dose of paracetamol.

My DLA claim was turned down, but unlike 2007, this time I was ready to fight it to appeal.


June
I finally bit the bullet and admitted that 20 hours over 5 days packing CDs is too much for me, and asked for help from everyone I could think of. The agencies who are supposed to help were the least helpful of all. My boss and I agreed that I would work 17.5 hours over 4 days and have Wednesdays off as a sort of mini-weekend to recover from Monday and Tuesday, and prepare for Thursday and Friday. This has worked incredibly well for me and I haven't needed a sick-day since.

The Tax Credits Appeals and Complaints department reviewed my appeal bundle and agreed that I don't owe them any money. I could claim Tax Credits as a working disabled person and be something like £3k a year better off, but I don't dare.

Remploy offered me £50 to falsify information, and to make it even worse they wouldn't even tell me what that information was - just sent me signature pages of forms.

July
Steve finished his exams and started work again and our financial position eased up almost instantly. He could have claimed benefit when our savings ran out, but having spent a couple of years watching in horrified amazement the merry dances that people like Pip, Bendy Girl and I have to perform not just before and during our genuine and necessary claims, but for months and years afterwards, he decided not unreasonably that he'd have to be starving first.

August
I didn't blog at all in August. There was a lot going on and I didn't have the brain-time to write any of it up. Steve and I went out and about a little bit more with our new-found income, but we also had to adjust to the new balancing act of my care needs and the effects of my job vs him being at work all day and no longer having all the time in the world for looking after me and keeping the household running. Social Services assessed me for help and I was approved for Direct Payments for care, as well as an emergency backup care plan.

I applied and was interviewed for a part-time admin job - didn't get it, but there was lots of positive feedback and it was a good confidence boost. We also went to Jiva and Munkt0n's wedding which was quite possibly the loveliest wedding I have ever attended.

September
With my DLA appeal drawing closer I found myself unable to concentrate properly on anything. Christmas orders started coming in at work and keeping on top of things, while do-able, was taking everything I had.

October
I won my DLA Appeal. It was backdated to the application date in February which meant I was suddenly owed a lump sum in excess of £2,000. I am proud of having introduced the Appeals panel to Spoon Theory.

After some prodding, I also got an official response about the Remploy problems from back in June. It was as pathetic as I have come to expect.

Then it was off to Lowestoft for a week's holiday with Pip and The Boy. This would have been a great idea, and I felt extremely well-rested, except for the bit where I came home to discover that I had to fit in a whole lot of extra housework because while I'd been away Steve had been having one of those weeks.

November
I finally got to go into town to open a bank account in order to receive Direct Payments, to pay for the care Social Services assessed me as needing.

"The whole thing is a bit chicken and egg, really - to get Direct Payments, I have to go into town and set up a bank account, but that's a major excursion for me, so really, I need Direct Payments to pay a PA to go into town with me to set up a bank account so I can get Direct Payments to pay a PA..."

I had another job interview which didn't go so well as it turned out to be for a full-time job, and much as I would like to, there is no way I can do full-time work.

Then my laptop died with a virus of great horribleness. Never before had I picked up a computer virus which my antivirus program couldn't swiftly and efficiently dispatch. We ended up with no real option but a complete fresh reinstall of Windows and then very carefully scanning and replacing files from backups. I know I'm an addict, but I didn't realise it would upset me as much as it did. I will be more careful.

December
Steve and I underwent the ultimate test of the strength of a relationship - we went to IKEA. We survived.

The Welfare Reforms mooted in February came to the fore yet again. The banker's report is being treated as rock-solid fact, and the BBC is somehow combining stories of mass redundancies with the stereotypical image of benefit claimants as scroungers who cannot be bothered. It scares me.

I got my Christmas Tree and decorated it, and with a stack of assorted presents underneath it was the centrepiece of a wonderful Christmas.

And now, I understand from my charming assistant that the fireworks have been purchased and the weather tonight looks to be cold but clear. Hopefully, see you on the other side - Happy New Year!

Interview Fail

I had my interview this morning. It was basically the job I'd interviewed for back in the summer, same interviewers and everything. It lasted about three minutes - a very good and positive three minutes, it must be said, although it mostly concerned the weather and how much nicer it had been on the previous occasion - before it became apparent that we were talking about a full-time position, 37 hours a week.

I cannot do 37 hours a week. I wish I could but there is no Reasonable Adjustment in the world that would make it possible.

I don't know what happened. I apply for all the part-time admin jobs on the website, but never the full-times because I know I can't do it. Maybe I misread or mis-clicked. Maybe they'd left a part-time designator on the title by mistake. Maybe it was a callback of candidates from the previous (part-time) post in the summer. Who knows. Upshot was, I'd got myself geared up and excited about things and suddenly I was in an interview for a job that I could not possibly manage.

If there is one thing I hate more than "not being able to do things that I want to do because of my disability", it is "having to admit to other people that I cannot do something."

As I explained to the interviewers that I would not be able to do a full-time job and apologised for having wasted their time, all the adrenalin and good-outcome visualisations that had me psyched up and positive and confident for the interview got snarled up in the crushing sensation of having to admit my inadequacies. God knows what my face must have looked like.

The interviewers were being really nice about it, and the nicer they were, the worse it got - I wanted to just shake hands and find a bolt-hole where I could cry for a minute and then recompose myself, but they could see I was disappointed and embarrassed and they were offering me a drink and asking if I was sure I would be okay to get home, because if I had a lift arranged they didn't mind me sticking around for a while, and did I want to call anyone...

Then I tried to stand up, fumbled my walking stick, it fell away from me and I tried to bend down but I couldn't, and one of the interviewers passed it to me, and I just felt smaller and smaller and smaller.

Scuttled into the loo on my way out, had my minute of crying before realising that on autopilot I'd gone into the disabled loo. It is one thing to tie up one of several available stalls in the ladies for a snivel, but quite another to tie up the only accessible toilet for a purpose other than the obvious. So I rushed a half-arsed job of calming myself down, didn't hang about to repair my makeup, and took the lift down to the foyer to call a cab. As I stepped out of the lift, there were the interviewers, coming down the stairs, taking advantage of the unexpected half-hour break, and there was me, blotchy of face and obviously far more upset than any sane person should be over a goddamn admin job. They were nice again, making sure I could call a cab and so on, and I did my best to brazen it out - oh well, hopefully you won't mind me coming back if there's another part-time job here and I haven't embarrassed myself too badly, ho ho ho - but there's only so much bluff a person can pull off when the world can see that the tears have only just stopped rolling, and while they said I absolutely should continue to apply for future part-time jobs, well, what else could they have said?

The problem isn't that I didn't get the job. The problem is that I didn't get the job because of factors beyond my control that I cannot find a way around. I do a pretty good job of convincing myself that despite my illness, I am doing okay at life, and with a few exceptions, I can do anything I put my mind to. The exceptions rankle though, and one of the biggest exceptions is my inability to consistently and reliably function at a high enough level to be able to hold down a full-time job.

Back home and with a cup of tea inside me, I know I probably should have continued with the interview, made them love me, and then tried to persuade them to drop the hours down, but I didn't have it in me.

The best thing about today so far is that last night I had the foresight to cast on for a sock to take with me and occupy myself while waiting for my post-interview cab. I would have gone nuts if I hadn't had something to do with my hands while waiting. Especially when the next person with "here for interview" tattoed on their forehead (ok, but) strolled into the foyer and took a seat to wait.

That'll teach me to get lulled into a false sense of security by life going smoothly.

My computer is unwell at the moment so I'm not online so much. Right now I'm using Steve's eeePC which is, well, it's okay but the screen and keyboard are tiny, it's not a main computer.

I'm back in my jeans and t-shirt now, feeling like a massive loser and really not ready to go and spend another afternoon of my life putting CDs in boxes. If I'm still doing that when I'm thirty then I want one of you to come and euthanise me, okay?

We Apologise For The Break In Transmission

Wow, no blogposts for a month. Not quite sure how that happened. My apologies to anyone who got concerned. I am okay.

On with the excuses, well, I had a week or so at the beginning of August where I couldn't seem to phrase anything right. After that, I kept telling myself I would blog later, which never came.

Two things are notable for having NOT occurred. First, I still haven't heard anything more on the Remploy problems. They were going to investigate it internally, but then my MP stepped in via the Department of Work and Pensions (DWP) and now contact is supposed to flow via the MP and the DWP. Which it isn't. In mitigation, my MP is the "anti-fraud" minister (see "we are determined to catch those taking money that does not belong to them") which probably makes it difficult to suddenly reverse mindset to a non-claimant whose problem is that they are being offered and declining to accept money.

Second, I haven't organised that proper week away at the coast and I'm no longer convinced that I want to. There seems to be an awful lot going on at the moment and I get the strong impression that my presence would only exacerbate matters.

However, I HAVE been doing lots of things.

I've applied to Social Services for help and they have done really well - preliminary assessment over the phone same-day, a home visit from a social worker to do a full assessment the following week, a home visit for a financial assessment the week after that, then it was a home visit from somebody from the Rowan Organisation to talk me through the options for Direct Payments and whatnot, and finally a visit for assessment by an Occupational Therapist.

This level and speed of response would be pretty good even if they'd just turned around and said "no, you're not eligible for any help, care, equipment or services, and even if you were, you'd have to pay the full cost." But amazingly, and despite all the horror stories I've heard from both service users and providers, they've really come through.

The social worker has assessed me as needing 7 hours of personal care and 3 hours of social care per week. The financial assessment means this will be funded by social services. The Rowan will help me use Direct Payments to hire a PA to help me. They will help me find a suitable Personal Assistant (PA), do criminal records checks, assist me with holding interviews, and help with the paperwork (eg taxes and NI for my PA). It's all ready to go and there is just one problem - while Steve agrees with the idea of me getting the help I need, faced with the reality of it he found that he has difficulty with the idea of someone coming into his house. I don't have the balls to just go ahead with it without his consent but hopefully we'll work something out soon, as it's really quite upsetting to be struggling and going without while knowing that I don't have to.

The social worker also said we could have an emergency plan, in case Steve is hospitalised or has a family emergency or something. The "In Your Place" scheme means that if something like that happened, a temporary carer would be sent to the house to stay with me and fulfil Steve's role - not just the active personal/social care things, but also supervision, and doing the things that I can't do but am assessed as not needing help with because I live with someone who can be reasonably expected to do them, like cooking or going to the supermarket or changing the sheets on the bed (the idea is that these things aren't "care" as he would have to do them anyway if he lived alone). The temporary carer would stay with me for up to 72 hours, until either Steve was back at home, or a longer-term solution could be put in place.

The Occupational Therapist has done well for me too. A lot of the simpler bits and bobs I need, Steve or I have already purchased, but she's got me things like a swivel bath seat that helps me get into the tub safely to have my shower. She'll come back for another visit next month to see how I'm getting on and think about what else I might need. Most of the things she wanted to prescribe, I can't have, because it's a privately rented house and the landlord might object to permanent objects like grab rails and level access and a stairlift being installed. But, she's writing down officially that she thinks I should have them, which might help with the DLA appeal and will be a head-start if we ever get our own place.

On a different level, I applied for an admin job. I made it to interview entirely on merit (I made it clear that I was NOT applying under the "two ticks" scheme) and from there got onto the shortlist, but didn't get the job in the end. I'm a bit disappointed. It would have been nice, it would have suited my skills more, and I'm keen to get out from where I am at the moment. However, my current job isn't unbearable, and it's not like there'll never be another part-time admin job advertised ever again. The feedback was positive but not in a vastly useful way - apparently my application, qualifications, experience and interview was all fine, there wasn't anything that they felt I should improve upon, and I'm the second choice, so they'll call me if the first choice passes it up or can't provide references.

Of course they might have just said all that to make me feel better. Who knows. For now, it suits me to take it at face value and think yes, I was good, someone else was better, never mind.

We went to the wedding as planned, which was a total success in every sense. We caught up with a few familiar faces from the darker corners of the internet, as well as meeting a few new ones, and had an absolutely lovely time. The weather behaved itself, so the ceremony took place with gorgeous sunlight shining through the windows and making the bride look even more beautiful. It was very relaxed, and everybody was happy. Technically I caught the bouquet, but we should probably bear in mind that I was the only one trying and it was tossed directly to me from a distance of about two feet, very theatrically, for Steve's benefit. Steve, for his part, pointedly ignored the whole thing. Bah.

I got to see Pip and the Littlun, who is now The Boy as he is more than waist-high. I can't believe how much he's grown! He'll be four soon. We played with his trains and read a story, and spent a lot of time doing a sort of counting/sorting game of his own invention with little ludo pieces. Seeing Pip was good. I have missed him an awful lot since moving away. We really could have done with an hour to chat like grownups, maybe next time.

There's been other stuff too - going places, seeing people. I can't remember it all and this post already has too much variety in it. It was a good summer. Hopefully there is still a little bit more to come.

Careers Advice

My teachers at school had high hopes for me ten years ago, when I finished my compulsory schooling and looked down the barrel of sixth-form. I wasn't a genius or anything, but I was a good all-rounder who was generally in the top five of the class in any given subject, with the exceptions of PE and Design Tech. It was even in the reference my form tutor wrote me - "Mary will be spoilt for choice of which A-levels to take."

If you'd told those teachers that in ten years time I would be scraping almost-minimum wage doing a trained-chimp job where I wear trainers to work, they probably would have looked very confused and checked that you were talking about the same Mary.

But, none of them would have been able to give you much of an idea what I would be doing. I was and am reasonably good at all sorts of things, but nothing has ever stood out enough to indicate a specific career of any kind.

At the moment, I am happy as a CD dispatcher. Some of the most important factors for me working are: that I have a flexible and open-minded employer; that my colleagues are sensible and understanding about my particular needs; and that it will not cause death and destruction if I am suddenly crumple up with a migraine (for instance, I should never be an air traffic controller).

In my current job, I have all of that and more. My boss and co-workers are supportive without being patronising, and if for whatever reason I can't work, then the worst that happens is a customer has to wait an extra day for a CD, which to my knowledge, is not the sort of thing that the fate of the free world depends on. We even have a good selection of drinks and biscuits provided in the office kitchen cupboard. That's the sort of perk that isn't to be taken lightly. Some of the most highly-paid career-people I know are jealous of me, as they feed their 20ps into the vending machines in the corridors of their corporate workplaces to obtain a styrofoam cup of alleged tea.

That said, no one should be surprised that I have no desire to be a CD dispatcher for the next ten years. No matter how lovely the people or the workplace might be, the job itself is tiring*, boring, low-paid, unchallenging, and probably not the best use of those all-rounder skills. Furthermore, since I have no interest in classical music, I have no promotion prospects within my current firm.

But, like my teachers ten years ago, I have absolutely no idea what I should be doing. My tragic realisation that, once I got past the age of 18, no one would give a monkey's about the school qualifications I worked so hard for, has not helped.

Some things I won't be doing no matter what. I'm not going to be an astronaut or a doctor or a lawyer or a rally driver or CEO at Microsoft. It's just not on the cards.

There's the stuff I used to do, "helping disabled and disadvantaged people into training and employment"... I was reasonably good at it and I did enjoy it, but these days I think it would be a little bit too close to the bone. I would flinch at having to deal with the Department of Work and Pensions in my work life and my personal life. In fact, this acquired mindset where I regard the DWP as "to be avoided at all costs", probably prevents me from doing most of the sort of social-care kind of work that would, how can I put this, make my Mother proud.

I can think of a hundred new things I could try (given support as appropriate) but most of them, such as being a teacher or a hairdresser or an accountant, would require me to spend a year or more getting qualified first. That isn't a problem. I'd be quite happy to spend a year or so at college, if I had a goal in sight. But I have no idea what I'd want to study and it seems pointless to study just for the sake of it, to put time an effort into doing a course on no real basis other that it happens to be running at the nearest college.

So for now at least, and until any better plans present themselves, I trundle along with the picking and packing CDs.



* The 'tiring' thing is the big problem at the moment. The 'Christmas rush' hasn't subsided, which is great for the company, but not great for me, as I really cannot maintain this level of daily physical effort. My boss would be happy to consider reduced hours, flexitime and so on, the trouble is that if I dip below 16 hours per week then my wages dip to 'better off on benefit' level. If I was a client of the company I used to work for, then I would be put on Supported Permitted Work which allows people who can only work part-time for disability reasons to keep a certain amount of earnings on top of Incapacity Benefit. But the local DEA (as featured previously) won't help, she just tells me I can work 16+ hours or not at all. I have an appointment with my GP next week, maybe she'll have some ideas.

I am also, god help me, considering Tax Credits, on the basis that if I have to wrangle with them ad infinitum anyway, I might as well do a smidge more wrangling and actually get something for it.