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.

Inaccessible Accessibility

I am, and have been for some years, a holder of a Blue Badge. The Blue Badge is a wonderful thing for access. My badge is up for renewal in a couple of months, and Warwickshire County Council have very helpfully (credit where it's due) sent me a renewal form and some guidelines.

They need proof of:

• My name, in other words my marriage certificate.


• My address, in other words my council tax bill.


• and my eligibility, in other words my letter confirming my award of Disability Living Allowance including the High Rate Mobility component.

So far no problem.

BUT!

They don't want the responsibility of handling original documents. They want me to send certified copies.

Okay, that's fairly sensible too. I prefer to keep my original documents in my own posession and I appreciate the effort to reduce the risk of losing them.

According to most of the UK, a certified copy is a photocopy of a document that has been verified as being true by a person who holds a certain position of responsibility. A doctor, a policeman, an MP, a civil servant, you get the idea. The Jobcentre made a certified copy of my marriage certificate when I went in to change my name. Or, that proud institution the Post Office will make certified copies of up to three documents for the fairly reasonable sum of £7.15 as part of their passport and identity services.

These certified copies are good enough for most institutions and can be used for opening bank accounts or getting mortgages, but apparently they're not good enough for Warwickshire County Council's Blue Badge scheme. Warwickshire County Council insist that the certified copies must be made by someone who not only fits the usual criteria, but also knows me personally and is not a relative.

(Amusingly, however, I can self-certify my own photograph for the badge as a "true likeness" without it having to be corroborated by anyone.)

I couldn't quite believe it and phoned them to check. The conversation went a little bit like this:
(Me): I'm a blue badge holder. I don't drive. I'm written up as "socially isolated" on my care plan. I don't know that many non-relatives. Can I bring in my original documents to your offices and wait while you copy them?
Only if you know someone here who can confirm that you are who you say you are.
Oh. No, I don't. Well, can I send normal certified copies from the Post Office?
Do they know you personally at the Post Office?
No, but they do proper legally acceptable Certified Copies...
They have to actually know you and be able to confirm that you are who you say you are. We've had to introduce these measures to combat fraud.
But you seem to have made it difficult for precisely the people who the scheme is aimed at! The reason I don't know people is because it's difficult for me to get out and about!
I can't discuss policy. There must be someone. Your best bet is someone who owns a local business. Do they know you at the local shop?
No, they don't know me at the local shop, because I'm a blue badge holder and as such I don't walk to the shop.
Or your bank?
I bank online. I shop online. I work online. I do most things online, because it's really difficult for me to get out and about and that is why I have a blue badge!
If you're working, how about your boss?
I am self-employed. I don't have a boss and I doubt you'd let me self-certify.
Anyone you know through work who runs their business?
Clients? Some of them would be eligible, but most of them have never met me, because I work online, what with the whole being eligible for a blue badge because it's difficult for me to get around issue. They only know me on email and phone calls.
But they know that you're you - they can do it!
May I ask you a question? Imagine you have a business. Imagine you try to project a professional image to your clients of being capable and self-sufficient. Would you feel comfortable placing yourself in a position of need? Giving one of them your disability benefits confirmation letter to thoroughly examine?
er... I see the problem but it looks like that's what you're going to have to do.

Warwickshire County Council, ladies and gentlemen. Recommending that I go whimpering to my clients. Advising me that I am obliged to do this in order to obtain an access tool. Refusing to accept the perfectly accessible and inexpensive identity-checking service offered by the Post Office. Creating additional barriers. Well done, boys and girls.

There is a happy ending. Another disabled person is helping me out. That doesn't make Warwickshire County Council's attitude acceptable.

Now, to take a deep breath and try to rewrite this post in a less ranty form, in the hope that explaining their error to Warwickshire County Council might lead them to change things in future.

2010 - A Roundup

January
My PA having left on maternity leave in mid December, in January I began working with a new, temporary, cover PA. I had another ATOS medical examination for my DLA renewal which went about as smoothly as these things can. I gave up on the business support organisations that had been messing me about and got in contact with The Prince's Trust, who were much more positive and useful about things, and helped me to write a business plan.

February
On February 5th I took the plunge and declared my little business “open”. Obviously there was a lot still to be accomplished in terms of developing and marketing, but it meant I was able to start invoicing and earning little bits of money from clients I already knew. As if in reward for taking the plunge, I found out that following my medical I had been awarded DLA “indefinitely” which meant it would likely be several years before I had to go through the process again.

Then, just when I thought life couldn't get any better, Evilstevie whisked me away for a surprise Valentine's weekend, and pulled off the most beautiful, geeky, romantic proposal I ever could have wished for with twitter, automated computer activities, stunning scenery, photographs throughout, and a gorgeous diamond ring. I said yes.

March
Since this was not a proposal for the sake of being romantic, but a real engaged-to-be-married one, wedding planning started with looking at potential venues and crunching through lots of brochures. At the same time, with the business “open” and a business plan completed, I was able to properly apply for, and was assessed and approved to receive, practical and financial help from the Prince's Trust, as well as Access to Work support in the form of an appropriate powered wheelchair.

April
This April I got very much into an online event called Such Tweet Sorrow - Romeo and Juliet, set in the modern age, with the core characters “acting” in real time by posting tweets, blog entries, YouTube videos and other interactive media. Usually you go to a theatre and suspend disbelief for two hours, but this was five weeks of having six additional people popping up in my twitter feed at all hours of the day and night, and audience participation was encouraged and responded to in character. This meant that the fictional, scripted characters were just as “real” to me as many of the people I interact with online in my wider social circle.

Meanwhile the business was still at a stage of mostly waiting on other people, and the wedding planning was at a level of research research research.

May
As usual, May opened with Blogging Against Disablism Day. Becoming increasingly immersed in wedding planning, my post was entitled It's Not Bridezilla To Want Access and highlighted the ignorance shown to disabled brides by the wedding industry. On a happier wedding note, we picked a date and a venue.

I also went to vote - not that it's done any good - and the Such Tweet Sorrow event reached its conclusion.

June
In June the Awesome Wheelchair was delivered and the world opened up for me. Steve was taking a holiday from work and we were able to go on many days out to properly enjoy the summer sunshine, and even took a short trip back to Lowestoft to say hello to everyone there.

June also saw the beginning of an amazing government-backed propaganda campaign against disabled people which laid the groundwork for the increasingly severe cuts to essential services that have been being announced ever since.

July
In July we officially gave our notice to get married, which is an interview where they check all your documentation to make sure that you are who you say you are, and you're eligible to get married in the UK. We also booked our bouncy castle, started buying pirate accessories, and made our Save The Dates.

August
Another wedding-focused month. I learned how to make balloon swords, because we don't want any injuries from people bringing their own wooden/plastic/metal ones. I also went dress-shopping with Steve's mother, which was an accessibility nightmare but happily resulted in the purchase of a lovely dress at a reasonable price.

September
In September I decided to start working on layouts and discovered Google's SketchUp software. I got a bit carried away, which means that yes, on the one hand, we have a to-scale representation of the reception building, with the correct number of to-scale chairs and tables and other items of furniture, all based on real measurements, which can be moved around to try out lots of different ideas. On the other hand, it means I sunk several hours into it and now have what might be called an excessively accurate 3D colour model of all indoor and outdoor areas when really, a bit of graph paper and some post-it notes would have probably sufficed.

Away from the wedding front, I went to the Food Festival with my PA, and had a wonderful time browsing around and enjoying the atmosphere. And Carie knitted a baby!

October
In October the attacks on support and welfare for disabled people became even more definite in the Comprehensive Spending Review. One of the most shocking cuts being made is the withdrawal of DLA Mobility from people living in care homes. We also saw the severe restriction of the Independent Living Fund (with a view to its closure in the next few years), the restriction of contributions-based benefits to a period of one year, shuffles to Housing Benefit which will see many vulnerable people being split off from their informal support networks of friends and neighbours, and drastic cuts to local authority budgets which are having a direct impact on Social Services.

Due to my privileged position as the de facto housewife of a man who earns enough money to keep a roof over our heads, petrol in the car, and food in the cupboards, I am not as severely affected as some. However it is no exaggeration to say that my independence will be affected, and that if I was still on my own, it wouldn't be a question of independence or of quality of life - I would be struggling to survive, and many other people aren't as lucky as me.

November
In November Steve took a permanent job, as opposed to the contracting work he has been doing so far. It has been taking some adjustment to get used to, but it is in many ways a relief to have a regular and predictable income and it has enabled us to push forward with a few more aspects of the wedding planning. My maid of awesome, Jiva, came to see us for a visit and we arranged the cake, tried on the dress again, and made a bit more headway with the planning.

Every 2011 bride I know held their breath as Prince William and Kate Middleton announced their engagement. Eventually they named their day and along with many others I breathed a huge sigh of relief that it wasn't going to clash (and my phone buzzed with “thank goodness! not your date!” messages). We must feel sorry, though, for the people who had already planned to get married on 29th April, who are now wrangling with Bank Holiday issues, London transport/major event issues, and the risk of being rather dramatically upstaged.

December
Early December saw the arrival of Pip's new Littlun (actually a Littlunette) who I am looking forward to meeting at the wedding if not before. As usual, December was largely focused on steering Steve and myself through Christmas. We got off to a flying start - the cards were written and 90% of the presents wrapped before the halfway point - but then illness and weather started to interfere, with the result that our final Christmas card was only delivered on New Year's Eve and we still have a present lurking under the tree. I've also had PA problems - the young lady who went on her maternity leave last year didn't come back, but she also didn't resign or let me know what she was doing, so I'm grinding through the disciplinary process which is a whole drawn-out procedural mess of formal letters and hearings and paperwork that I could have done without. I also found myself writing a guest post for Where's the Benefit when David Cameron made his priorities clear in a sickening if predictable way.

Nevertheless it was a very enjoyable Christmas. We saw in the New Year with friends (although, unusually for us, without fireworks), and we're confident and ready for 2011.

And Up Again

I've spent the last month or so having a bit of an ME flare-up, which hasn't been nice. What's positive, though, is that I've been ill for long enough to be able to identify that it's just a flare and deal with it accordingly. In real terms that means doing lots of things for ten minutes at a time. So, a quick run through of my usual topics...

Steve
Is lovely. He's not enjoying the heat very much (he prefers to be cold and add layers) but we've still been out in the sunshine a few times when it hasn't been too stiflingly hot - barbecues, cream teas, going to the park and suchlike.

Pip and The Boy
The Boy is fine and continuing to grow like there's no tomorrow. Pip, on the other hand, is suffering a bad case of Clumsy at the moment and has managed to sustain two entirely different injuries requiring hospital treatment in as many weeks (and on separate occasions). He says the most upsetting thing is that he is currently perfectly capable of making a cup of tea, but lacks the capacity to carry it anywhere. I desperately hope this is not the set-up for a "scald" injury to complete the set.

Wedding
Plans for the wedding are coming along nicely. We have fixed our date in May next year, booked the registrar, made an appointment to give notice, and chosen and booked our venue. We've also forked over the deposits, which means that even if we don't manage to decide on anything else, we now have everything we need in order to get legally married.

However, we haven't paid the premiums for an Approved Premises wedding (extra for venue hire, extra for the registrar to travel, etc) just to turn up in jeans and t-shirts and drag a couple of witnesses in off the street. So there's still an awful lot of planning to be done.

Business
The business is off the ground now, with "real" paying customers who didn't start off as personal friends, a website, some wonderful artwork, and best of all some really interesting jobs. Some boring ones as well, it is true, but one research project in particular I had an absolute whale of a time doing.

I really want to show it all to you, not least to give due credit to the terrific people I've worked both for and with. Also this blog, with regular-ish content, quality comments, and four years of archives, has a respectable Google PageRank which would give my business website quite a boost if I linked the two. But for now at least, I really want to keep my business and personal online identities as separate as I can.

Wheelchair
Allegedly due tomorrow morning. However given the previous issues and timelines so far (applied week1 February, assessed week1 March, approved week3 March, test drive week2 April, placed order and deposit week2 April, now it is week2 June) I am trying to not hold my breath and haven't booked any activities yet. However my friends and I have been coming up with lots of ideas for things I could do, including but not limited to:

• The Cancer Research UK Race For Life next year - I won't be getting a winning time, but I should be able to accompany a friend who is expecting to walk around.


• The Stratford Town Walk which is allegedly both free and accessible.


• Getting a Disabled Person's Railcard and going places by train.


• Going around Ikea and only needing one assistant.

Even if I don't do any of that, though, it will be nice to just go round the block and post a letter without needing help to open the garage or someone else to push or drive me. I fully expect Steve to have stuck a proximity tag on me within a month.

Anger at Current Affairs
Um, let's not. Even if I could whittle it down to just one target, we would be here far too long. Let's just say that I don't feel very represented by the new Cabinet (not that the old one was better) and can only hope that the extraordinary wealth and privilege that they do represent brings with it a sense of noblesse oblige.

It's not Bridezilla to want access

Written for Blogging Against Disablism Day 2010.

Regular readers will know that my life at present divides into two main areas:

1. Planning my forthcoming wedding.



2. Running and developing my business.

While working on these projects, I have again and again encountered two important truisms:

1. "Wedding" translates roughly as "add another zero" - there's a lot of money involved.



2. Business is about persuading other people to give you money.

Everyone happy with these starting principles? Then let's move along to the disability angle.

I am a part-time wheelchair user. At my wedding, I will be walking down the aisle (I'm hoping to get one of these gorgeous walking sticks for that bit), but I will be using a wheelchair right up to the ceremony room door and for most of the reception. There's just no other way that I will last the whole day and yet still be able to participate.

This adds a whole range of access requirements. At other people's weddings, I'm prepared to shuffle in side entrances, withdraw to the car for a nap, sit on the floor or crawl up steps if necessary. On occasion I've attended for just the ceremony or just the reception depending on the preference of the happy couple. But damned if I'll be doing that at my own wedding. It's not Bridezilla-ish to put the needs, wishes and comfort of the bride and groom directly at the top of the priority tree.

And I swear, it's like watching a bathtub emptying as the possibilities dwindle to almost nothing on the simple query "can I get in?"

Venue is the obvious one. As a small business owner, I have been repeatedly made aware that I have a duty to consider how disabled people might access my products or services, and what adjustments I might put in place to improve access, even if it is not reasonable for me to make those adjustments at this stage. Make it as easy as possible for as many people as possible to give you as much money as possible.

Some places are honest enough to simply declare on their websites that "owing to the historic nature of the property" they'd like wheelchair users to just f--k off. They don't phrase it quite like that but it's the message loud and clear - they're not allowed to say "No Blacks, No Dogs, No Irish" any more but the cripples can Keep Out. Worse than that, though, are the ones who haven't given it any thought at all. And worse still was the hotel who claimed they had great access throughout, invited me to visit, and then we found out that the ceremony and reception rooms had decent access but there was no access to any of the other facilities included in their wedding package, such as the Bridal Suite or any other 'deluxe' room, the swimming pool and spa, the gardens, the bar, the restaurant...

I could go on for days about the barriers I've encountered, but suffice to say that based on physical access alone, from the 50 or so local venues in a range of styles and prices that a non-disabled bride could choose from, my pool of choice was down to about 10 (call it 8 because I am NOT getting married at a Holiday Inn) and it took a couple of hours of emails and phone calls plus several of my precious Social Care hours to find out that much.

I should not have to work so hard to try and spend a Wedding amount of money.

Wedding dresses are the same story. I need to be able to stand up and sit down in my dress (or possibly trousers, might be easier, not sure, but we'll stick with saying "dress" for now) and still look bridal. So the chair is definitely going to have to come in with me for dress shopping and fittings.

Another half hour or so on the phone reveals that there are NO wheelchair-accessible bridal shops in Leamington.

There's ONE in Warwick, the next town along. Possibly two - the person I spoke to told me something something side entrance should be wide enough because they're sure they've had "wheelchair people" in the shop before. The others were basically trying to persuade me that I should be prepared to crawl up and down the stairs (remember these people knew nothing about why or how I use a wheelchair) and that maybe I could get a friend to carry the wheelchair up the stairs for me.

I wonder, do they propose that non-disabled brides should attempt to do an assault course with a bridesmaid on hand to do weightlifting, just for the privilege of handing over a Wedding amount of money?

One even told me "well you have to make the effort." Excuse me, no, I don't. I am the customer. You are the business. You have to make the effort to get my money by making it as pleasant and easy as possible for me to hand it over. Not by treating me as an inconvenience and expecting me to work for it.

Business owners have a duty to consider how disabled people might access their products and services, and what adjustments might improve access. Failing to do that, particularly in the wedding industry, means failing to understand those two simple starting points - that "wedding" means "add another zero" and that business is about persuading other people to give you money.

I am enjoying the wedding planning; I have found a venue that meets our needs and I'm sure I'll find a dress as well, one way or another. But I certainly don't feel that my experiences are matching those of a non-disabled bride.

Test drive

On Friday I had my test drive of the e-motion power-assisted wheels suggested by my Access to Work assessment.

The Invacare rep got the chair out for me and I sat in it for a while with the power-assist turned completely off, gently pushing backwards and forwards and just getting used to where everything was. The weight saved on the chair was added to by the wheels so it didn't feel too different to my existing manual chair (this is a good thing as it means if the power dies I will still be able to get myself out of the way). Then we turned the wheels on to the low setting.

Wow.

No exaggeration, I was propelling it with my fingertips.

It was a bit disconcerting... kind of like a combination of walking on stilts, and trying to stand on a balance board, you know what you should be doing but it's difficult to suppress your 'normal' reactions. In a standard manual chair, if one wheel is going a bit too fast you either tug on that rim a bit to slow it down, or you push the opposite one a bit harder to catch up. But the wheels exaggerate the force applied... I didn't come off the pavement or into anyone's garden, but it was a near thing for the first minute or so.

A couple of hundred metres later we reached the end of the block and the first uphill slope. Two metres in and I could feel some resistance (although bear in mind that with a non-powered chair I wouldn't have even got this far). So I clicked it to the higher setting, and effortlessly glided up to the road.

Now the learning really started. The kerbs around here, even the dropped ones, are a bit too vicious to just roll up. So I had to learn how to tip the chair. The way you tip a chair is by gripping the wheels and shifting your bodyweight... this allows the small front castors to get onto the pavement, and then you can tip down again and give the wheels a good shove to get properly onto the kerb. Obviously when the wheels are powered it's easier to do the shove to get the big wheels onto the pavement, but it's that bit trickier to do the tipping. Happily the wheels are paired with anti-tippers, sort of stabilisers that stick out the back so that although you can tip back a bit, you're less likely to go right over. More on that later.

That dealt with, we were on to the main slope. This part of the hill is quite steep. If the wheels were going to fail anywhere, it was going to be here, and while I hoped it would work, I was entirely prepared for getting halfway up and needing a rescue.

Nope. Straight to the top, and talking the whole way, too. We had a bit of a rest at the top - the rep needed to get his breath back after walking up the hill, and I needed to tweet about having got off the estate! I was a little bit sore, obviously, but rather than it being a muscular pain from over-exertion when pushing, it was more just the unaccustomed repetitive shoulder movement as I moved my arms back and forth to touch the wheels.

Downhill was obviously much easier. Again, the intelligent wheels made a big difference - rather than rubbing my hands and clicking my wrists trying to pull back against an uncontrolled freewheel, I just had to keep light contact which prompted the wheels to apply resistance to stop themselves getting too much speed. The tipping for the kerbs was easier second time around, and before I knew it we were back home, where we pulled up the spec sheet and started talking options.

As far as the chair goes: the basic bare-minimum cost of the chair is £1,129, and the added bits and bobs that are contractually compulsory add-ons for it to accommodate the e-motion wheels (superior axle fittings and suchlike) bring it up to £1,528. This pretty much matches my AtW grant for the chair which is £1,526.

There are a couple of other options I want on the chair which don't come as standard. Steve and my PA both have quite small cars, so I want to get the fold-down back to make the chair more likely to fit in the boot... that's an extra £265. I will still need someone pushing when I'm having a rough time or if the batteries die... Steve is very tall, my PA is my height, so height-adjustable handles, £174. Other options that would be a bit nice but not quite as important are the bag that clips in underneath the seat at £34, a seat cushion at £45, and mud-guards which are £108 (fixed) or £193 (removable). I think I'm probably not having those.

Then there's the wheels themselves, rolling in at a cool £3,995. My grant for the wheels is... £3,995. How handy! Unfortunately, those anti-tippers mentioned above? The ones that are an absolute necessity if I want to have any chance of mounting the rubbish kerbs near my house without landing on the back of my head in the road? An extra £240. I'll pay it, obviously, and I'm not complaining by any stretch of the imagination, but it's a bit of a startling unplanned expense whilst being the sort of "option" that I wouldn't really class as "optional". I would have really expected that to have been included in the original assessment along with axle fittings and brakes.

I didn't want to let the rep take the wheels away, even though the chair they were on for the test-drive wasn't quite the right size for me and a horrible colour. I'm getting really impatient to go out, especially with the sunshine! The plan is that next week, once I've really ironed out exactly what options I'm having and made my final colour choice, the rep will visit again to take a deposit and the final order. After that, it should be about two or three weeks before I can take delivery.

I am very, very, very excited.

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.

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.

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.