That's not a compliment

Written for Blogging Against Disablism Day 2012.



I try to keep my personal and professional identities separate. When people ask me what I do, and they are potential friends rather than potential clients, I tend to grin and rather flippantly tell them that I write blethers for other people's websites. That's not all of what I do, not by a long way, although it's the favourite part of my job – it's interesting, I'm good at it, and I often enjoy it. But let's face facts, the question “what do you do?” rarely means “please describe to me in detail everything you do with your day,” rather it means “tell me something that will fill this conversational gap, and possibly help me to build my mental image of you.” Telling them with a smile that I write blethers for other people's websites is a short, good-humoured and effective way of filling this hole with the image of a woman who spends her day working in an office, at a computer, the image equivalent of a Visa card, acceptable everywhere.

What does that have to do with disablism? Well, it's about where the conversation will go from there.

Often people feel compelled to congratulate me. Good ways of congratulating a person include phrases like “Hey, that's great!”, “it must be so rewarding to have a job you enjoy,” or even “I wish I could do something like that!”

Unfortunately all too frequently I hear something along the lines of “Great! At least you're doing something with your time, not like all those lazy benefit spongers, half of them aren't what I'd call disabled anyway, I mean if you're doing it, why aren't they?” Often this is followed by an anti-welfare rant rounded off with a baseless assertion that “most” disabled people “won't even try,” and a final verbal pat-on-the-head to me for “giving it a go.”

TOP TIP. The way to compliment me is not to disparage the entire minority group to which I belong. Treating my work, where people pay me money for my skills, as nothing more than a time-filler is also insulting. Furthermore, it would be good if you can avoid waving around the negative stereotypes and slurs which have been applied to me and my disabled friends on a regular basis for the last few years, and while we're at it, please don't attack the welfare system which quite literally saved my life by keeping a roof over my head and food on my table for the first couple of years when I got sick.

I'm one of the lucky ones, and I don't want the price of that luck to be ignoramuses trying to use me as a stick to beat down the people who have not been as lucky in similar situations.

Back to work

No, not me, but Steve. We had a lovely summer together, but we also have a wedding to pay for, so after his much-needed break poor Evilstevie has trudged back to the coalface of the IT industry to earn us some beans.

It's a bit of a shock to the system, but it's also kind of nice to be settling back into the work-day routines again. I have resumed my wifely task of making him a nice packed lunch every day. "Making" is stretching the point a little as it consists of making some kind of sandwich, putting it in a box, and then adding little pre-packed snacks of varying unhealthiness (from fruit cereal bars to bacon frazzles) until the box is full. But it's something I enjoy doing, and it's something he enjoys eating, and it also gets me points with my future-mother-in-law because while Jamie Oliver would probably scream with disgust, at least it means Steve eats something during the day.

Once Steve and his snacks have gone to work, I've got the house to myself for the day, which is taking some getting used to. Obviously I've been working all along so it's not like we've been spending every waking moment together, but I'd got quite used to the way that every couple of hours one of us would decide to make a cuppa and say hello while we were at it. I'm certainly drinking less tea without him here.

The other thing I'm trying to do (although so far I've only managed it two days out of five) is to try and play on the Wii a bit each day, in the name of moving about properly and maybe even trying to get a bit of weight off pre-wedding. My favourite game for this is Just Dance, which differs from most dance games in that instead of demanding intricate footwork on a floor pad, which would see me flat on my face within about fifteen seconds, it's big movements with your arms and body - you can play it standing still, or sitting down, or on one leg or jumping about the place if that's your thing. There's also a nice warm-up session on it, which I can't manage all of, but I do my best and at least it means I've stretched a bit. Pre-disability I really enjoyed dancing, so this is good fun and the music makes it easier than doing physio in silence.

If anyone else can recommend any good Wii games that move more than just one arm, don't require good balance, and have varying levels of physical impact, please leave a comment. I wouldn't have even known about Just Dance until I happened to hear another crip mention it. I'm a little bit limited on space - 160cm between the TV and the sofa, which isn't enough for me to lie down full length - but beyond that I'm open to suggestions.

The Hawking Comparison

As the government's attacks on welfare claimants increase, stupid and offensive comments about disabled people are being repeated more and more often. The one which is bothering me today goes something along the lines of:

"That Stephen Hawking bloke earns his own living, therefore benefits should only be given to people who are more disabled than he is."

Yes, that Stephen Hawking bloke does earn his own living, and all power to him for that. However:

1. He is a bona-fide 100% genius, and was already recognised as a genius before his illness was affecting him.

2. Quite possibly because of that genius, he has had access to custom-made adaptive and assistive technology FAR above and beyond the norm. Professor Hawking was using technology in the 80s that is not necessarily available to people with the same condition even today.

3. If the genius aspect was removed - if instead of being Professor Stephen Hawking, PhD, CBE, FRS and however much else of the alphabet you feel like adding, we just had Steve Hawking with seven mediocre GCSEs from the local comp and a bronze swimming certificate - how employable would he be? If the man who holds the workings of the universe in his head were to express an interest in coming to give a lecture at your nearest college or university, it's a fair bet that they would scramble to provide wheelchair access to as much of the campus as possible and make every other adjustment asked for in terms of allowing extra time, ensuring appropriate parking space, and whatever else is in his 'rider'. Would they do the same for someone who had applied for the minimum-wage caretaker's position?

Professor Hawking is a remarkable man and as such he is the exception, not the rule. The only possible answer to "Stephen Hawking has a job, why don't you?" goes something along the lines of "Stephen Hawking has written several best-selling books explaining scientific mysteries which have baffled the finest minds for centuries - why haven't you?"

It's one thing to aspire to the achievements of the most amazing people ever to have lived, but quite another to take them as a benchmark for what is expected of us.

Prince's Trust

I had my panel interview with the Prince's Trust the other day, and the good news is they thought I was great, so I'm getting all sorts of support from them.

The most important part, to me, is being put on their "business mentor" scheme, where a young entrepreneur (I still count as young by their definitions, how good is that?) gets matched up to an older and more experienced businessperson who can offer guidance and support. This neatly bypasses the "if you know it all about business, why are you working for a teacher's wage rather than running a successful company?" question asked of all business studies teachers throughout the ages.

I have nothing but praise for the Prince's Trust so far. Everyone I've dealt with has been positive and flexible, and although there have been some unexpected access barriers I've revealed that they hadn't noticed previously, these have been dealt with rather than ignored. Admittedly not with perfect solutions, for example I had to travel to Coventry for the panel meeting and I had to pay my PA for that myself, which wasn't cheap - but on the other hand we shifted many of the things which would normally be onsite meetings to being email or phone conversations, or on one occasion, an advisor coming to meet me somewhere more local. I definitely feel like I've been met half way.

There was one marvellous moment in the panel interview where one panel member, trying to put me at my ease, started to say what I'm sure he says every time, something along the lines of "now please don't worry, I'm sure every applicant who sits in that chair feels a bit nervous but we're lovely really..." he got as far as the "ch" of chair before he remembered that he had moved The Chair because I was, in fact, sitting in my wheelchair. There were about two seconds of verbal hang-time before he grasped the word "position" and I swear, I felt like giving the man a round of applause for a wonderful save.

All in all, it's a definite improvement on the previous "business advisors" I was being passed around.

Wheelchair assessment

Yesterday I had my Access to Work wheelchair assessment.

Wheelchairs are tricky things with strange criteria. If you tick all the NHS boxes, then you get a "voucher" towards the cost of a chair (although you may have to supplement this with hundreds if not thousands of pounds of your own money in order to get a chair you can live from rather than one which merely keeps your backside off the ground). If you don't tick the NHS boxes, then you get bog-all.

I don't tick the NHS boxes. My mobility is limited enough so that I warrant a "normal" manual wheelchair. However, since my arms are affected in much the same way as my legs are, a manual wheelchair is only any good to me if I have someone else pushing it. Obvious solution: a powered wheelchair. Unfortunately for me, to be eligible for a powered wheelchair you have to be needing to use a chair to get about inside your own home - which I don't.

I do of course have my scooter but to be honest, I've barely used it since I started working. It was great when I could go out on it for a few hours and then sleep for the rest of the day and most of the day after... but these days I just don't have the spare energy to be able to drive it all the way into town and back. It's also too big to put in a car or take in a taxi. And in work terms, it hardly enables me to present a professional image - I never cared if the shop assistants in town saw me rolling up windswept, rain-soaked and knackered from the ride in, but for potential client meetings it's a different ball game.

All this led me to ask Access to Work if I could have help getting a powered wheelchair from them. Hooray! They said yes, I could, although it would be subject to a wheelchair assessment from one of their people, and I would have to provide a letter from my doctor confirming that it would be medically appropriate and that I was fit to use a powered chair. Fine by me, and my GP has been more than happy to provide a supporting statement.

Access to Work sent a very nice man we shall call H to come and assess my needs. First we talked about what I wanted to be able to do that I currently can't do. Locally, I wanted to be able to go to the postbox or the little local post office by myself so that I could post my own letters and buy my own postage supplies without needing to arrange for an assistant or beg a favour. In the surrounding area I wanted to be able to do my banking, visit the main post office, attend meetings with clients or my Prince's Trust advisor/mentor, and access networking events.

Next, out came the measuring tape. Apparently I have very long legs. I need to find out how much I weigh.

Finally we started talking about possible solutions. And this is where I was gobsmacked. I was expecting him to suggest something like this, something that looks kind of like my scooter with the front end taken off.

His idea is more along the lines of a more traditional ultra-lightweight manual chair, but with 'intelligent' powered wheels that work in three ways:

1. Turned off, they are like normal wheels, you hold the rims and manoeuvre yourself about, or someone can push you.
2. Turned on, they are like normal wheels would work if you were really strong, you push the rims with a little push and they use gearing and battery power to go WHEEEEEEEEEL! until you tug on the rims and they apply the brakes.
3. Apparently there is an option for a joystick for completely powered travel, but he was a bit vague on this - he said it was a new product and I haven't been able to dig it up online.

The major benefit of this system would be that my powered chair would only take up the same space as a normal wheelchair including being easily foldable for transport. I also like the idea that if the chair runs out of battery, I won't be stranded wherever I stopped - I can just self-propel myself to the nearest place where it's safe to sit around, and call a regular taxi.

Also it will look much nicer.

He's going to write up his report, Access to Work will approve it or not, and then I can have some test-drives. I'm very excited.

Getting on with 2010

Life has been (mostly) nicely full since my last post.

The biggest nice thing was that Steve and I went on a little weekend jaunt to the top left north-west corner of Wales. There wasn't a special reason beyond "getting out" and in many ways I think that made it even more enjoyable. We were supposed to have another friend with us, but unfortunately he had to drop out at the last minute... in retrospect that's probably a good thing because I don't think Steve's car was built to hold more than two adults for long journeys.

So we spent Saturday trundling as far as Bangor, where we stopped overnight at a Travelodge, and then on Sunday we picked up a load of leaflets from the foyer to see if there were any particularly appealing attractions. Which there were, but for some unfathomable reason most of them aren't open until Easter. Tsk. So we decided to take our trek to the top left north west corner to extremes, and headed over the bridges to Anglesey, and thence to Holy Island.

On the way we stopped in at Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch and got a couple of postcards, because we couldn't not. The sun was shining and it was a beautiful day, so we then continued on to the bird sanctuary at South Stack. There was wheelie access right up to the clifftop (and probably right off the clifftop if you weren't careful) and it was lovely to be able to sit there watching the sun, sea, waves, lighthouse, birds, boats, and also looking out for our own noses falling off with frostbite because it was COLD! Still, that's only to be expected for January.

Steve tucked me back into the car to defrost while he ran about taking more photos. I got out my phone to amuse myself and was a little disturbed to find a text message from my mobile phone provider welcoming me to Ireland and advising me of the Euro Roaming Charges. I don't know whether to be peeved at the lack of local signal, or be impressed that my phone was getting a signal from over 60 miles away.

The rest of my enjoyment of the beautiful scenery was from inside the car, but it most definitely was beautiful. We found time to stop at Trefriw Woollen Mills which was nice in a "yay! found yarny!" way, but again, most of the features apart from the shop were closed up for the winter.

Poor Steve obviously had sole responsibility for the driving which meant that he was as shattered as I was by the time we got home. A substantial part of last week was spent with me taking it as easy as possible during the day, to make sure that when he crawled in after work in the evening I wouldn't have to ask him to do as much.

Then on Friday, just as we were picking up again, we both came down with the latest illness sweeping around his office! It was a really nasty one with fevers and yuck - one of those ones where you decide you can't cook, order a takeaway, and then it arrives and you just look at it, knowing that you should eat, but unable to bring yourself to actually do it. Happily it was just a two-or-three-days one and we're both feeling a lot better now.

The business stuff is all but ready to go now, thanks to the help of the Prince's Trust. There's still a few chains to be completed, silly things like: I want to pay for my insurance, domain name, etc, from the business account; I'd rather not start charging things to that account until I'm certain that the capital I paid in has cleared; I won't know if it's cleared until I've had a look in the online banking; I can't look at the online banking until I have all my login details. But the bits and bobs are in place. Mainly I just have to man (woman?) the heck up and take the plunge of registering.

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.

Prepared

I knew there was a reason I'd put so much time and effort into getting ready for Christmas well ahead of time... we went to a big family meal with a handful of children small portable germ warfare agents present, and now Steve and I are both suffering from Winter Lurgy. Yesterday in particular was hideous, with a mother of a migraine that actually made me throw up (usually they only make me feel nauseous).

Thankfully, having everything sorted out already, along with me not being "at work", has meant that I've been able to properly rest up every day so I'm nothing like as floored as I would be if I was still thrashing myself to pack CDs. Since I'm not that wiped out, I'm able to tackle a bit more of the household stuff than I otherwise would, which in turn gives Steve half a chance to recover when he staggers in from work.

It does mean I've had to put the business development stuff on hold. Again. Yup, the hopes and dreams I had for that referral to the Council for Disabled People being the business development support I needed were unfounded. It turns out that this particular project is set up to help "voluntary and community organisations supporting disabled people" rather than helping disabled people set up businesses that intend to serve anyone, disabled or otherwise. It was a completely inappropriate referral and all we can guess is that the person who referred me was just panicking and opting for the first project with "disability" in the title.

So I'm pretty much figuring it out on my own now, with some helpful printouts from Business Link and any number of PDFs on the HMRC website. Most of the basics are in place - including, today, the good news that my PO Box will be up and running at the beginning of the year - but I have kind of lost momentum. I think I may be best off calling it a proper Christmas/New Year holiday and picking it up again after my birthday.

Also in the New Year, I'll be interviewing for a new PA, as the lady who has been working with me this year has gone on Maternity Leave. I'm quite hopeful, and a lot more confident now that this is the second time going through the recruitment process.

Despite the various setbacks, I'm still feeling really positive about things, and as usual I'm very much looking forward to Christmas. So let's round off with my really awful snapshot of my really lovely Tree.

(edit to add title!)

I am that good

Feeling rather pleased with myself at the moment.

I've more or less stopped flustering and panicking about self-employment (remember that five weeks ago the concept hadn't crossed my mind) and I'm making good, steady progress towards being set up and ready to go. I've completed about half of the online business course, and about two-thirds of my business plan. I've taken care of a number of practical issues (things like the VOA assessment for whether I'd have to pay business rates) and I have some sensible questions to ask the advisor I'm meeting with this week. I've picked a name, set up an email address, installed a suite of office software, done some market research, got some quotes for logo-type artwork... the list goes on*.

On top of this, I'm also ready for Christmas. Steve's having a bit of a trying time at work right now and tends to come home with his brain dribbling out of his ears, so I took charge. Step one, I made a list of people we should buy presents for and a list of people we should send cards to. Once he'd approved these, step two, I wrote out all the cards for him to add his signature. Step three, we determined who we were likely to see during December and dug up addresses for the others, and I sorted out the envelopes all nice and ready for the postbox. Step four was a list of suggested gifts from online retailers for almost everyone on the present list, approved and purchased.

Step five was an actual shopping-centre trip to dig up gifts for those we hadn't found anything for online. Step six, I've been wrapping and labelling the gifts as they have come into the house. We are now at a point where the completed boxes of wrapped presents have been dispatched to the people we're not going to be seeing this year, and there are a couple of plastic boxes of wrapped presents and a stack of cards ready for the people we are planning to see.

We are, in fact, all set for Christmas, which is pretty good considering that we're still in the first week of December. Steve isn't sure whether to be amazed or disturbed, but is presenting it as concrete proof of my abilities to anyone who asks him what it is I'm planning to do and whether I'm any good at it.

*by the way, one of the items remaining on the To Do list is finding someone to hold my hand through the website process. Any takers?

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.

All Change

So, obviously the gods didn't feel like I had enough on my plate with the DLA/CAB stuff and the Social Services stuff and so on, because on Friday, I lost my main job. Sort of.

To start at the beginning... when I started that job, two years ago, the company was a small one and the job mostly consisted of sitting on a perch-stool at a workbench, selecting and scanning CDs, packaging them up with the right address/postage/customs stuff on them, and putting them on a shelf depending on which part of the world they were being sent to. The CDs I needed were mostly within reach of the workbench, but four or five times a day, an order would come up containing a CD that was on a shelf on the other side of the room. Excitement! Sometimes there would be some sort of special request or larger order to sort out, but mostly, that was it, until the end of the day when my colleague would put the packages we'd done into mail sacks, weigh them, and I'd put the information into the Royal Mail website ready for the postie to come and collect it all.

However, the company has grown, and with it, so have the demands of the dispatcher job. It's steadily increased over time. Now there are CDs in stock filling floor-to-ceiling shelves in two rooms, orders often weigh in excess of two kilos, and the loft space has been adapted to hold the supplies of flatpacked cardboard boxes that we now have to keep stocked. What has not increased is my ability to walk around or lift heavy things or climb ladders. If I was interviewing for the dispatcher job today, I would be having to apologise to the interviewers for having wasted their time as several aspects of the job are now beyond my capabilities.

On Friday afternoon, about halfway through my shift, I was called out of the packing room and into the boss's office. I was then asked to look for another job as the changed dispatch role was no longer suitable for me.

I was promised a fantastic reference but told that there were no roles available within the company that might be more suitable for me, and that it wasn't fair to the other dispatchers if I was doing all the less physically demanding parts of the job. I was thanked for all my hard work.

Head spinning with shock, I offered that I could learn to do just about anything, or I could ask an Access to Work Occupational Therapist to come in and see if any further adjustments could be made... but their minds were made up. Hard work, much appreciated, excellent worker, no complaints, glowing reference, not being given notice as such, but role no longer appropriate, please seek alternative employment soonest.

As an employer of a PA, I'm quite certain that for a conversation like that an employee is supposed to be advised in writing at least 48 hours beforehand and told they're allowed a representative with them. However it will surprise no one that instead of imperiously standing up and berating them for this laxity of procedure, I whimpered that I understood and asked if I could be excused to go and sit by myself for a few minutes to get my head around things.

But there's only so long you can spend sniffling in the Ladies loo and of course I can't independently leave the building - I need to wait for my taxi to turn up. So I went and packaged CDs for another hour and a half. What else could I do?

Options:

I could get signed off sick, as it is my poor health that means I cannot manage the changed job role. However, this means I would also have to stop doing my second job as well, and would screw up my lower-than-average sick-day record which would have an impact on my future employability. Also, just the thought of trying to deal with ESA makes me feel sick.

I could find another job, suitable for my abilities, with hours that suit me, that pays more than benefits rate and is prepared to take on a disabled person. In a recession, in a town where this week the paper reported there are six Jobseekers (ie healthy people on JSA) for every vacancy listed at the Jobcentre. Hahahahaha.

I could keep working until such time as they do actually outright fire me. However it is an understatement to say that since the "discussion" I have now lost the sense of loyalty and motivation that was making me put myself in more and more pain and swallow more and more drugs to try and keep up with my job.

So I took the initiative and on Tuesday, I resigned.

Dignity and self-respect more or less intact, a certain amount of annual leave to use up during my notice period, they don't have to try and accommodate me any more, and I don't have the unpleasantness of trying to work at a place I know wants me gone.

Once I finish my notice and have my P45, then I'll also technically resign my second job and set up as a self-employed person. I'll continue doing the second job, but instead of submitting a timesheet and having my employer do the PAYE thing, I'll invoice my employer for the hours worked and pay my own tax and NI. My earnings will be very low, but Steve has agreed to support me while I look for another "main" job so that I don't half-kill myself doing Christmas temping.

If anyone who reads this does the self-employed thing and can recommend a person or organisation that can do a bit of hand-holding when I do my first tax return, that would be appreciated.

And then the rain came down

Things have suddenly become Busy here in the land of Mary. Let's see, where were we up to...

The Second Job has started and is going well. Access to Work agreed that I should have an ergonomic keyboard and mouse, which I bought and they should be refunding at the end of this month. I also explained about how I would be mostly working at home but would occasionally need transport to go to what you might call Company Headquarters, in order to be shown how to do things, or given materials to work with, or to speak to my manager in person. So instead of being approved for "up to 10 journeys a week" (eg five trips To and five trips From work) like I am for my main job, I've been approved for "up to 104 journeys a year", which on average is a To and a From each week, but acknowledges that my working pattern is very, very flexible.

I had a second attempt at the chocolate cornflake cakes, this time using proper dark cooking chocolate. It worked much better than my Galaxy/cocoa powder/water combination. I'd show you a picture, but we ate most of them at knitting night. It probably would have been all of them but we felt we should save one or two for Steve. I would like to thank the ladies for sincerely congratulating me on my achievement without any sniggering.

I got my Direct Payments Monitoring Return completed and sent off. The stamped printout of the transactions for the period covered by the missing statement never did arrive - no idea whether that's the fault of the bank, or the fault of the Royal Mail, although I know which I think is more likely - so instead I made copies of the wage slip and BACS slip for that month and added a post-it note explaining that the statement was lost in the post, but this is what went in and out of the account and look, it tallies up with the end balance on the previous statement and the start balance on the next one. I'm sure they'll contact me if that isn't good enough.

So yeah, all in all I was feeling pretty proud of myself for keeping on top of it all and having everything ticking over.

And then the rain came down.

In among the self-perpetuating drizzle of increased pain levels because of the damp and cold, and grottiness because of increased painkiller side-effects, and getting frustrated and stressed because the grottiness makes it hard to think and the pain makes it hard for me to move so I can't DO things, and extra pain because the stress makes me tense, round and round and round, are a couple of real thunderclouds.

Firstly, my PA told me of a couple of issues that may affect her ability to work for me. I respect her confidentiality as I expect her to respect mine, so all I'll say on that front is: she's a great PA, I'm happy employing her, she's happy working for me, and it isn't anything that either of us have "done wrong", it's just one of those things. But what I can say is that, as an employer, I'm having to increase the gradient of my learning curve to perilously steep levels in order to keep up with what our respective rights and responsibilities are in this situation. I'm also having to spend a few extra hours on the phone and having meetings during the daytime, which interferes with my ability to save enough spoons for work.

Secondly, it's DLA time again. The form is a new one - shaved down to 40 pages of personal and depressing questions rather than the 50+ it was previously - but from what I can see, this has mostly been achieved by trimming down the spaces given for the non-tick-box questions. For instance, the question about help needed to take part in "hobbies, interests, social or religious activities" used to be close on three pages. Now, they provide two 5cmx16cm boxes, one for activities at home, one for activities when you go out. Which I guess is more than adequate if you don't need much help, but if you don't need much help, why would you be applying for DLA?

So Monday evening will be spent trying to contact the Citizens Advice Bureau by telephone (the local CAB is only manned four days a week, for five hours at a time, most of which I am at work). I'm hoping my combination of disability and having a job will be enough for them to allow me to make an appointment. Obviously I'll have to take time off work for such an appointment, but it would still be much better for me than the usual process where you go to the office and sit in the waiting room for however many hours it takes until someone becomes available, and if they don't become available, you come back the next day. It's not the fault of the CAB, who are staffed by volunteers and chronically underfunded for the amount of support they are meant to provide. But it does make it that little bit more inaccessible for those who need it, and it's another thing that shouldn't be soaking up my limited annual leave allowance.

Every time, this makes me angry. Services and support tend to assume a disabled person has an infinite amount of spare time, energy, money, learning capacity, and administrative ability at their fingertips. Get off benefit! Go to work! Squeeze all this crud in on top! How?

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.

Is this the right target?

"Business leaders have called for a minimum wage freeze as part of measures to help private industry drive the economy out of recession."

Business Leader: Someone who is not attempting to live on minimum wage.

Minimum Wage: In the UK, for people over 22 years of age, £5.73 per hour. In real terms* a minimum-wage full-time worker has about £20 more per week in their pocket than someone on state benefits, which are defined as the minimum amount the government says a person needs to live on.

The cost of living is rising and basic essentials like accommodation, food, water and fuel are becoming more and more expensive. The problem is... let's say that in the next year the cost of these necessities rises by £500 overall. A Business Leader might have to cut back on luxuries - perhaps one less meal out per month, or one less holiday per year, to cover that. They'll still have a pretty good quality of life. A Minimum Wage Worker, on the other hand, doesn't have that many luxuries to cut. They're already on the poverty line.

I don't know what the way out of the recession is, but I feel certain that it shouldn't be the people who are working their backsides off for a tiny wage who get kicked in the shorts in the name of saving the economy.




* For a full-time worker, minimum wage is £212 per week. This is about £60 a week more than a single person's state benefits of approximately £150pw (comprised of Housing Benefit (~£70pw), Council Tax Benefit (~£20pw) and Jobseeker's Allowance (£60.50pw)) but must also cover things like prescriptions and dental work (free for people on income-related benefit) as well as additional work-related expenses such as suitable work clothing, transport to and from work, and of course tax.