26/52 2018

Week 26
25 June - 1 July



A lot of new housing has gone up around our area recently, and with it, new playgrounds. Access is bobbins and parking non-existent, so I've only seen this one on drive-bys. But Steve made a point of taking Jamie up there as many summer evenings as possible, and they always had a brilliant time.

06/52 2018

Week 6
05 - 11 February



I wasn't actually present when this picture was taken. Steve took Jamie for a Daddy Outing to Foundry Wood, which is one of those rare places where I really wish I could go (it's a lovely outdoors natural environment community project with an interesting activities program), physically cannot go (there's only one entrance and that is a steep dirt track way beyond the capabilities of either wheelchair), and yet I can make my peace with the inaccessibility (natural environment, etc) as long as someone ensures that Jamie isn't missing out.

Also, not to put too fine a point on it, while I'm trying to soak up and enjoy all of Jamie's childhood it is also good for me to have a couple of hours OFF every now and again.

Anyway, Jamie and Daddy both loved it. They came home and showed me dozens of pictures of an absolutely idyllic time discovering all manner of interesting things. Choosing just one was difficult but I do love Jamie's happy little face in this one.

12/52 2017

This week's photo was taken at a rather lovely playground in Stratford upon Avon.



The equipment is wonderful, the surface is accessible, and it's worth the drive - but what made it magical this week is the bit in the background, just behind the brightly coloured house Jamie is playing in.

Yes, it's a real-life digger, or "DIG-DIG" as Jamie calls them. I suppose they must have been about to install a new piece of play equipment or something, ​because it was digging away right inside the playground. He thought it was amazing and had to stop and stare at it every time he went over to a different toy.

08/52 2017

At the park again, and making better and better use of the equipment. Jamie is really getting the hang of climbing, although he's still somewhat overwhelmed by bigger kids. Having my PA able to hover behind Jamie on my behalf is a boon though. I do my best to be alongside, but playgrounds aren't perfect surfaces and I can't always get as close as I'd like.

Coombe Country Park

This weekend Steve and I had a friend come to visit, and the three of us went to Coombe Country Park. It's very pretty and a really nice place to spend a sunny day. Entry is free, parking is the really quite reasonable sum of £1.90, and access is pretty good as these things go. It's "natural" paths rather than tarmac, so not the smoothest of rides, but in the dry weather the easy access route is very do-able and the medium access was what I would describe as bumpy, but possible with assistance.

I needed assistance three times.

The first time was to go over a bridge. The gradient of the slope up was just a little more than I could comfortably manage... I probably could have done it but there's no prizes for hurting yourself when you're with people who are entirely happy to give you a boost.

The second time was to go down a slope where the path had a deep rut all the way along the centre, presumably caused by a combination of feet, bikes, and from the look of it I suspect water when it rains. It was just a bit too wide for my chair to go astride it, and there wasn't quite enough space for me to go down one side of it - especially once nettles, tree roots, patches of loose pebbles, patches of loose sandy soil, etc got factored in. So Steve took my chair down and our friend took me, and we all made it safe and sound to the more solid path at the bottom of the hill.

The third time... the third time was the most terrifying, but was nothing to do with the park itself. It happened, of course, at about the furthest point of the two-mile medium access loop around the forest and conservation area. My left front wheel started making a funny noise. The funniness of noises is a bit subjective when you're talking about hauling a four-year-old cross-folding wheelchair along a forest track, but this was a really funny noise with more than a hint of ominousness. I looked down, and noticed that one of the two bolts holding the left front wheel unit on was sticking out by just over an inch. I put my brakes on, reached down, and caught the bolt as it came out completely and the whole wheel unit flopped.

Things got worse as I examined the bolt and saw it required an allen key. Although I had two pocket multitools with me, furnishing an assortment of screwdriver heads, cutting blades, bottle openers, tweezers, pliers, etc... the nearest allen key we knew of was in the car. Which was at least a mile away over terrain which in one direction was completely unknown and in the other direction would include going up the slope that I'd already needed help to get down.

I got out of the chair again and we all took a closer look to see how much of a field job could be done with the tools we had available. We hadn't lost any bits, and it seemed to have simply untwiddled itself rather than having sheared away or anything, so that was good. Unfortunately, Steve realised that lining up the bolt that had come out would mean undoing the second bolt as well to take the whole wheel unit right off, in order to align the whole thing properly for both bolts to go in together.

Being out and about, especially in nature-type places, always gives me a sort of thrill that people who've never been housebound don't quite get. Look at me, how daring I'm being, not only out of the house, but a mile or more away from the nearest car. Which is great until the point you're sitting on a dirt path, knowing that yes, that's right, you're an actual mile or more away from the nearest vehicle, and trying to stay calm while someone fully detaches a wheel from the object you depend on not just to get back to a place of safety but to move around independently once you're there.

Of course it could have been worse. There were three of us. It was a sunny, dry day with about eight hours until sunset. We were on an "official" path, we had phone signal, a picnic blanket, and plenty of water. I was hardly at risk of life or limb. I trust Steve, and I know that he has more mechanical ability than I do, and I know that he's read the manual, and I know he won't put me at unnecessary risk. I was happy to let him lead the repair effort, and he kept me informed and waited for my permission at each stage. Even so I was only one notch off a panic attack at the point the wheel was entirely removed.

Thankfully my faith was not misplaced. Within a few minutes Steve had got the wheel back on and we were able to move again, albeit somewhat cautiously and with all three of us continually peering at the chair every few minutes. The rest of the path was much kinder, and bit by bit we reached the visitor centre, got some lunch, and then I installed myself on the picnic blanket within not just sight but wobbling distance of the car.

On our return home, Steve tightened up every bolt he could find on the chair, using the Official Toolkit. Apparently most of them were pretty tight and the ones on the right front wheel were basically immovable, so we don't know why the left one managed to work loose.

The bad news is, now the car has started making a funny noise.

BADD: Less hostility, please!

Could everyone please stop glaring at the people who support me?

No, seriously, knock it off. The people who support me, which encompasses friends, family, and paid employees, are absolutely invaluable to me. They increase my quality of life more than I could ever describe.

Yet all too often, when we are out in public, they are subjected to tutting, glaring, and occasionally verbal abuse. They're sick of it. So I have to put myself in the way of it. I'm sick of having to do that.

The Battle Of The Blue Badge

We're out and about. We've parked, legally and legitimately, in an accessible parking spot for blue badge holders. My blue badge is correctly displayed.

Half an hour later, we're not going home yet, but one of us needs something we've left in the car - a jacket, an umbrella, a bottle of sun cream. Or maybe we've purchased something that's a bit too bulky to carry around all day that we want to lock in the car while we continue shopping.

Fatigue is a big part of my illness. An extra few hundred metres to the car and back can make a significant difference to me. Especially if to a person using the stairs it's only fifty metres. It should be possible for me to ask my non-disabled companion to nip back to the car while I use the opportunity to sit quietly for a few minutes and gather my spoons. That would be the sensible thing, right?

Instead, I end up going with them so that the visibility of my wheelchair provides a force field to protect them from the hostility of the self-appointed parking police who believe they can assess disability and determine legitimate blue badge use at a single glance.

No companion of mine has ever reported any trouble from an actual parking attendant.

Drive-By Training Sessions

Since I got the power-assisted wheels of awesomeness, I've really developed a taste for independent mobility. I know, these wacky concepts some people are into. The rule, therefore, is: unless I am losing consciousness, or I am oblivious to an imminent danger, or I have specifically requested that you do so, it is never okay to take hold of me or my wheelchair. It's pretty much the same rule that applies to physically grasping anyone to take control of their movement.

I can go up hills. I go more slowly than I do on the flat, but the wheels do the work. Sometimes passers-by ask me if I'd like any help, and - as long as they believe me when I say No Thank You - that's okay.

What's not okay is when they stare pointedly at my companion while saying "someone should be helping her," or worse, "you should be ashamed, letting her struggle like that."

On one occasion it got so bad that the friend who was with me asked for permission to just put their hands on the handles of my chair lest they be fried alive by the laser-beam eyeballs of a particularly indignant stranger. I refused - I will not reinforce the false prejudices of others by pretending to be more helpless than I am - and to my friend's credit, they respected my refusal.

It did impact the mood of the afternoon, though. If we'd been walking at that pace, no one would have batted an eyelid and we'd have been free to enjoy ourselves without intervention.

Dominion Of The Golden Throne

Yeah, you knew this was going to crop up. The accessible loo.

My companion waits outside while I'm doing what one does. The locks and indicators on the doors of accessible loos are notoriously unpredictable, so sometimes I'll ask them to let any other would-be widdlers wanting to go in know that it's occupied.

And this is the one where disabled people themselves are the prime offenders. From the other side of the door I hear them refusing to listen to my companion's explanation, barging past, rattling the handle, and launching into a rant about the facilities being for disabled people only - a statement which also includes a lot of assumptions about the "disability status" of my companion. On a less dramatic and more frequent level, there's the people who position themselves to block my exit from (and my companion's potential entry to) the cubicle. As a rule, they have the good grace to blush and get out of the way when they deduce from my wheelchair that oh, I am disabled, and maybe this person was just waiting for me, and oh gosh, what if I'd opened the door because I needed them to come help me, oops... but that doesn't help. It just makes me thankful that my wheelchair, as well as being a mobility aid, is a symbol. It makes me worry that one day when I'm walking with my stick, which has less symbolic impact, the situation won't be defused as efficiently. It makes me scared for the various people I know with leg or back impairments who can stand and walk quite well unaided but need a fixed handle to safely manage to sit down.

Situations like these make me upset that yet another everyday non-event has been turned into a battleground, and guilty that I have exposed my friend or employee to abuse, and powerless because I feel fairly certain it'll happen again.


Again and again, the barrier that is hardest to knock down is the attitudes of other people, and our own. Even when I have privileges like the blue badge, equipment like the wheels, accessible facilities like the loos, accessible environments with step-free ramped routes, and appropriate human support - the issue of disablist attitudes remains, and impacts negatively on me and on the people around me.

This is the barrier that Blogging Against Disablism seeks to overcome.



If you haven't already, please visit Diary Of A Goldfish to read more posts.

Eden Project - Time of Gifts

(picture heavy)

Steve recently finished what I shall tactfully describe as a "gruelling" work contract (and yes, that is putting it mildly) which took a toll on both of us, and we decided that we were owed a little break before getting into the fun of preparing for Christmas and trying to figure out where our life goes next.

Given a free choice of anywhere to go, nine times out of ten I will pick the Eden Project (the tenth time I will beg to stay in bed and be brought cups of tea). In the last year we've been to Cornwall three times, and on each occasion we've visited the Project for two or three days, and I still always feel sad to leave.

Last time we went was in May, when it looked like this:


In November, even inside the Biomes, it's more like this:


I still get a great sense of peacefulness and well-being from the Project. And the access. Oh, the access. No being sent round the back, no staff tutting at you if you can't keep up, no "special" holding pens areas, no leaving you sitting by the bins while they try to find out if anyone knows where the keys for the service lift have got to. Universal design, access is front doors and main paths all the way. The slopes can be a bit of a workout and there is a certain amount of mileage involved in getting around the place, but they have scooters and powerchairs which can be booked in advance. November being the off-season, they weren't all booked out, so at the gate I was politely offered the option of using one of their powerchairs "if it would be easier." More importantly, my choice of sticking with my own chair was accepted without fuss.

As he tends to, Steve took hundreds of photographs of all sorts of beautiful plants, flowers, sculptures and suchlike, and I'm sure soon he'll load them up to his Flickr stream which will be much better than me trying to describe. But he's let me pop a few onto my own Flickr stream so that I can blog this.

The second day of our stay, the Friday, was the beginning of the winter celebrations at Eden, which they call the "Time of Gifts". There is, of course, a Father Christmas with a cohort of elves and a stable full of actual reindeer, much of which is centred around the Sami people of Northern Europe. I was more interested in the goings-on within the Mediterranean Biome, though - storytelling, music and craft activities particularly. There are definitely worse things to do on a Friday afternoon than to sit and make Christmas decorations and chat with a bunch of friendly strangers, listening to live music and surrounded by the gorgeous smells of Mediterranean plants. As it got darker, Steve returned from his photography spree and brought me a hot chocolate to warm me up while we listened to the evening story and music.



Then it was time to leave the Biome and get ready for the lantern parade. There were large sculpture lanterns being carried mostly by staff and volunteers, but anyone who wanted could join in the parade with a pyramid-shaped lantern on a stick, with a candle inside it. Anywhere else, I'd have assumed I couldn't participate. At Eden, no one batted an eyelid. So here I am, in front of the big Christmas tree outside the Core, carrying a lantern wedged between my legs and my wheelchair, waiting for the parade to start:

And modelling my own handknit hat by the light of my lantern:


The procession began with large sculpture-lanterns coming down the ZigZag path towards the Core building, where we were waiting. It was an impressive sight, although with a slightly hairy moment as a nearby child forgot to pay attention to his own lantern (my reaction of "excuse me! please don't set fire to me!" made me realise just how incurably English I can be). As the sculpture-lanterns and their accompanying drummers came past, we were filtered into the procession. It was quite a strange experience to be actively participating in something like this, being one of lots of little bits. There was a very carnival atmosphere.


The procession wound around the gardens outside the Biomes, lit by flame torches with occasional groups of non-participating onlookers. It ended by a gazebo of fairy-lights, where the Eden Choir were waiting to perform. Since the wheelchair makes me an honorary short person, I was ushered to the front with the kids so we could see.



Listening to the Eden Choir was lovely, and some of the drummers joined in ad lib. Then there was a short and unexpected burst of fireworks which sent Steve whirling around to try and catch a shot:


Finally, this lovely piece of fire art, lit while the choir sang, reminded me very much of the Paralympic closing ceremony which meant that in a strange way it reminded me of summer again.

Naidex 2012

On Wednesday, I went to Naidex National at the NEC, Birmingham.

I have to say, Naidex itself wasn't as good as last year. Last year, I saw all sorts of innovative products and came home with lots of literature and a wish-list as long as my arm. I also picked up goodies like the National Trust's Access Guide, and was able to have demonstrated to me how much more comfortable an ergonomic office chair can be. A number of stallholders were communicating on Twitter, having actual conversations with people who said they were going to Naidex, encouraging them to come and say hi at their stall, and I dropped in on several of them. There were also a few inventor/entrepreneur types there, interested to hear ideas about what products we'd like to see in the future. I felt like I was the target market as a disabled adult in charge of her own home, equipment and finances.

This year was different. Only one company - PoolPods - engaged with me on Twitter. Their product, while I'm sure it's lovely, isn't really relevant to me - but I thought I would say hello anyway. Except I couldn't find them! Step One was easy, finding them in the list of exhibitors, they were listed under "P" for "PoolPods", simple. Stall G82. Step Two was slightly more difficult, trying to find Stall G82 on the printed room plan, but after a bit of hunting I spotted it tucked somewhere at the back of the hall. But Step Three, actually finding that stall? Couldn't do it. There were frequent traffic jams because a small cluster of two or three people standing in front of a stall could block half the aisle. Add to that the lack of signposting or labelling of the aisles (would it be so hard to have North-South aisles numbered 1, 2, 3, and East-West aisles labelled A, B, C?), the manoeuvrability issues of many attendees (wheelchairs don't tend to sidestep well, mobility scooters are often quite long) and the usual pedestrian traffic flow problems (people stopping for a chat on a busy intersection), and it was nigh-on impossible to follow a planned route to a particular point on the map. Nor was it possible to just wander up and down the aisles until you found what you were looking for - the layout was confusing, the aisles weren't continuous, and stalls faced all directions. There were several stalls I saw twice or three times and others I didn't see at all.

The small, interesting vendors with "everyday" disability products (such as Trabasack and DisabledGear) didn't seem to be present this year. I also felt that there were fewer stalls aimed at "people like me". For instance, I saw umpteen companies offering incredible, amazing off-road wheelchairs, powerchairs, hand-cycles and suchlike. We're talking massive knobbly off-road tyres, aggressive-looking LED arrays and exciting metallic paint finishes. That's great, but these aren't the sorts of chairs you can use for your everyday needs. You couldn't ride them into Starbucks, or a high-street shop, or a work meeting, or your kid's school for the parent-teacher evening. They also probably won't fold down to fit in the boot of the average Ford Focus, either. They're aimed at people who are disabled but who also have TENS of THOUSANDS of pounds to blow on leisure equipment over and above what they use every day. This made me feel sad. I mean, on the one hand it's terrific that disabled millionaires have so many choices of how to spend obscene sums of money, but on the other hand, products like comfortable wheelchair jeans are going to be far more relevant for far more people.

But! That was only part of why I went. The other part was to have the opportunity to meet up with other disabled people, and that was managed with great success. One is a very good friend who I have met before on several occasions, and we had a much-needed cup of tea together that in itself made up for the disappointment of the exhibition. Another person I have "known" and considered a friend for many years, but only online, and my PA tells me that my face lit up like a Christmas tree when I saw her for the first time. Others had familiar names and I'm pleased to be able to add faces. Eventually our group - consisting of two powerchair users, two manual wheelchair users (myself included), one person using a mobility scooter, and two people without any visible mobility aids at all - made our way into a well-known pub/restaurant chain for lunch.

Incidentally, I still get a thrill from that. Us being able to go and have lunch together in a pub is concrete proof that campaigning for equality works, has worked, and can continue to work. There's still a way to go, but it would have been unthinkable thirty years ago.

The meal was not spectacular. The company and the conversation were. There's an unusual sense of freedom when socialising with other disabled people, because you can actually go ahead and talk about disability issues without having to draw a diagram of the welfare/social care systems, and without being pitied, and without having to listen to any ablesplaining about how surely X doesn't happen any more, and the real problem is Y, and if you try Z it'll all be sorted out. No one feels the need to make the stupid jokes about running over people's toes and there's no sense of being the "odd one out". For me, it's also really refreshing to socialise in a role other than as "Steve's wife" - Steve is a nice person and so are his friends, and I like spending time with them, but it's a completely different thing to socialising as purely myself.

Of course we're all rather wiped out now. For spoonies, a look around an exhibition followed by a couple of hours having lunch and a chat with half a dozen friends can have repercussions for days on end. It's embarrassing to think about how long it's taken me to write this post. Nevertheless, I still think that despite the disappointment of the exhibition itself, the day was worth it.

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.

Wedding Venue: Stoneleigh Park

Apart from the date and the dress, the other big thing I didn't want to broadcast online until after the wedding was the venue.

In England, you can get married in a church, in a register office, or (since the 1990s) in "approved premises". Since neither I nor Steve have any religious beliefs, it would be disrespectful of us to get married in a church, not to mention meaningless. And there's no parking - not even blue badge parking - at the register office's "Ceremony Rooms", so approved premises it was. This has the other big advantage that you can have the ceremony and reception in the same place.

We had already decided that I would use my chair for as much of the day as possible, and of course there's always the chance that guests may have their own access requirements, so accessibility was important to us. I regret to say that most of the venues in our area either admitted outright that they could not provide proper wheelchair access, or simply didn't bother to respond to my queries. This took us from the choice of fifty-odd venues that a non-disabled bride would have, to a choice of about half a dozen.

Stoneleigh Park, also known as the National Agriculture Centre, is an absolutely unique venue. They've got all sorts of on-site facilities (4x4 offroading? Segways? Helicopter landing pads?) and different styles and sizes of room. Access, while far from perfect, is much better than at many of the other Approved Premises, but what really swung the decision was the attitude of the staff.

You see, there are plenty of wedding venues that hold perfectly "nice" weddings as long as you are having the wedding they want you to have. If you want a lovely ceremony and then reception drinks and then a mediocre yet formal sit-down three-course meal followed by speeches and a cheesy disco, they'll make it happen, but heaven forbid you suggest anything outside that template. They look at you like you've grown a second head or something.

Not Stoneleigh. I'm sure they could do that sort of wedding, and they'd probably make a perfectly good job of it, but it would be a wasted opportunity. They're used to holding Major Events. They're not primarily a hotel, or a golf club, or a village hall. They're a dedicated events venue accustomed to dealing with hundreds, thousands of guests at a time. This means that they aren't scared of doing something different. They pride themselves on flexibility. The only limits were (1) the laws of time and space, (2) the law of the land, (3) imagination and of course (4) money. Not as much money as you might think, though. I mean, they're not a budget option, but their quote was competitive with the hotels and golf clubs who were really offering much less for the money.

The Stoneleigh Park staff were absolutely awesome. My first point of contact was a woman called Rachel and she co-ordinated all the planning for rooms, facilities, liaising with our on-the-day suppliers, making sure we had all the right contracts and invoices, that sort of thing. Whenever I had a problem or a query I could go straight to her, and especially in the last few days when last-minute things popped up, she was wonderfully calm and capable at dealing with them.

The other main staff member we dealt with was a man called Mark who was in charge of our catering, and was our "on the day" co-ordinator. He worked closely with Rachel to be sure he knew what our plan was, and then on the day he oversaw events and, with his team, made sure the day went absolutely smoothly. Armed with a phone, a walkie-talkie, and a little golf-buggy type vehicle for zipping about the site from location to location, he anticipated everything. I haven't seen him in a single photo, yet somehow he was always there if we had a query and the answer to any query was usually "already being taken care of," which gave the day an almost dream-like quality.

There was not a single moment, from the initial enquiry to the post-wedding feedback enquiry, where Steve or I felt our wedding was receiving any less attention than the larger events hosted at Stoneleigh Park.

The level of privacy we had was wonderful, too. There was another event on-site that weekend (a scout camp) but the buildings, gardens, and other facilities we were using were for our private use and completely separate from anything else that was going on. We didn't have to fight town-centre car parking or put up with intrusion from pub regulars. We didn't have to schedule our food around other patrons of the restaurant or try and ignore the decorations from a playgroup. There was a handy on-site hotel, but our celebrations were in a completely different building. It was like having a tiny world set up entirely for the convenience of us and our wedding guests.

So we got our bouncy castle. We had a garden. We had comfy sofas. We had pictures by a lake. We had a cream tea. We had platters on tables rather than a buffet. We didn't need a seating plan. We were able to choose what drinks were served at the bar. Our estimated finish time of "erm, we'll have to see how it goes," was acceptable. They were completely unflappable and didn't say No to a single suggestion, although they often made suggestions that enhanced our ideas with the benefit of their experience, which was very welcome.

I really would recommend Stoneleigh Park as a venue to anyone planning a wedding.

Guestbook

The wedding looms ever closer. The craft-project chaos of my lounge is gradually turning into stacks of boxes with neat little contents-lists stuck to them, Evilstevie has confirmed his time off work, and really, everything's on track.

I keep telling myself, and anyone who has a tizzy at me, that the venue is booked and paid for, the registrar is booked and paid for, and we have the rings - therefore a wedding will take place. Everything else is fluff.

But fluff is fun, and today's fluff is the guestbook.

The guestbook isn't really a book. We're doing it in the form of lots of luggage labels, which our guests can write on or otherwise decorate as they see fit, and pin to a line at the reception.

I'd quite like to pre-populate the line, to get the ball rolling. So here's my idea. If any blog readers who aren't coming to the wedding would like to add a message to our wedding guestbook, then pop it in the comments, or email me, and I will be able to print it out and stick it to a label.

I know to new readers this may sound a bit "internet! validate me!" - no. If you don't feel you know us, or you've nothing to say, then there's no need to say anything. It just felt a little bit strange not to include the online side of our lives in our wedding day.

It is possible

Today is Blogging Against Disablism Day 2011, hosted once again at Diary Of A Goldfish - and many thanks to her for this.

Last year I was in the early stages of wedding planning, and meeting with barriers, discrimination and disablism every step of the way, so my post, It's Not Bridezilla To Want Access, detailed a few of the difficulties I was running up against.

This year... well, the wedding is this month and I can't really think about much else. So this is a short, wedding-focused post. You'll forgive me for not posting the exact date, time and location online until after the fact.

I am pleased to be able to report that we have, after a great deal of time and effort, managed to find sensible, flexible suppliers for everything we needed and wanted. The registrars have agreed that it's not necessary to ask us or our guests to stand during the ceremony. The venue rep has been awesome about communicating mainly via email as this is easiest for me. We went out of area and found a couple of accessible dress shops who eagerly helped me to try and find the perfect dress. A lovely family business who deal mainly with repairs and alterations to leather motorbike clothing have created me a beautiful pair of ivory wheelchair gloves with padded leather palms, that are both practical and feminine. A terrific Folksy seller has created our flowers, including an extremely custom corsage for me to wear on my wrist for the ceremony, that is also the perfect shape and size to adorn the controls for my wheelchair during the reception.

The triumph is bittersweet. I really do feel that I should have been able to expect businesses to be accessible. I feel that, in 2011, I should be able to make my decisions based on things like cost, quality, and attractiveness of product, rather than on which businesses were willing to have me as a customer.

All that aside though - I'm getting married. I'm disabled, I'm overweight, I have bad skin, small boobs, and terrible posture, I wear glasses, I have extremely low earning potential, and later this month I am marrying a man who was entirely uninterested in the amorous advances of at least two of the non-disabled guests attending. As a couple that faces disablism (because yes, it affects him too) every day of our lives, we have managed to put together what promises to be a wonderful, enjoyable, accessible wedding ceremony and a relaxed, personal reception party. I believe as a society we CAN get past disablism.

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.

Wedding dress!

Short version for the easily bored: I bought my wedding dress. No, there aren't any pictures.

Long waffly version:
I wasn't expecting to have bought my dress already. Truth be known, I thought it was a process that would take months. But, I felt I should start that process sooner rather than later, so my Future Mother-In-Law (FMIL) and I decided that we would begin dress-hunting once she returned from her summer holiday. While we weren't averse to the idea of second-hand or internet-ordering, we felt it would be a sensible start to try on a few different styles and see what worked on me.

The first issue I had to sort out was the extremely limited access to bridal shops. I phoned all of the ones I could find listed locally. None of the ones in my home town were wheelchair-accessible and only one, maybe two, in the next town over were able to tell me that they had access. Not to be put off, I made August appointments with both of those. One of them cancelled, so eventually we just went to the one remaining shop, which was Eternal Bride in Warwick.

They were lovely. I don't think they were experienced with disability issues and it would have been tricky to get through the store if I was using a more typical bulky type of powered wheelchair, but they were friendly, polite, non-intrusive, and made every effort to accommodate me. I was impressed.

They even managed the Holy Grail of assistance - they asked me what I needed and then they paid attention to my answers.

We tried on loads of different shapes and styles of dresses from the racks and got a really good idea of what works well, and what I should avoid. Then I had a bit of a rest while FMIL and Debbie (the member of staff helping us) went upstairs to look through the sale dresses (three-figure price tags rather than four). They came back with about six dresses, all of which I probably would have chosen myself at that point. And once they'd been tried on, one of them was considerably nicer than the others...

Unfortunately it was a discontinued style so I couldn't simply plan to order it nearer the time, and, due to the fact a huge train skirt won't work with the wheelchair, it would have required some £150 of alterations on top of the not-inconsiderable price of the dress itself. I was tempted, but felt that I should not spend that kind of money without thinking about it, consulting Steve, and going to more than one shop. Debbie very kindly agreed to hold it for us for a few days and FMIL and I started frantically trying to find somewhere else to try dresses.

Since the biggest issue with the dresses in Eternal Bride had been the huge floofy skirts and trains, we decided that our best bet would be to try a department store. We figured this would carry outfits that were more "cream-coloured formalwear" than actual bridal gowns, and perhaps have a more modest price tag. Monsoon, for instance, used to carry a small range of dresses that would be equally suitable on a low-key bride, a grownup taking First Communion, or someone attending a prom. I'd already had a look around local department stores with this in mind, but hadn't found anything, so it was back to the phones. It seems that many department stores now only carry a bridal range at their flagship stores, but I was able to make an appointment at House of Fraser in Birmingham.

Advice: don't bother. It was all £1,000-plus floofy dresses with huge trains, and an added rather baffling feature was that many of the dresses had SHARP beading and sequins under the arms - I didn't even wheel anywhere but after half an hour of trying-on I had loads of angry red marks and scratches on my inside upper arms. Dejected, FMIL and I met up with Steve for lunch in the Bullring, where we spotted Sonique.

Sonique mainly do prom dresses, or to put it another way, they have a huge range of formalwear, in colours including white shades, many of which do not have trains and do not floof out by a metre or more. They're also that bit more affordable. And the staff know their stuff - rather than having us rummage through all of the hundreds of dresses in the store, the lady we spoke to listened to our list of features we liked and disliked and then picked two dresses off the racks and invited us to come and try them on.

Sonique are not champions of accessibility. Like every other store in the Bullring, they have level access built in from the word go, and they have kept their aisles uncluttered. However the changing cubicles are one-person size with no seat and solid swing doors, which meant that since I needed physical help getting into the dresses, I was basically expected to take my top off and then stand propped in the corner of a cubicle with the door open while the assistant got the dress over my head and did it up. I still had my jeans on underneath and I wasn't feeling very impressed...

... then I turned around, saw my reflection in the big mirror, and had the fabled "this is my dress" moment. While I stood there gobsmacked, stick in one hand and doorframe in the other, the assistant looped a matching wrap around my arms and it was perfect.

Trying not to get overexcited, but no longer so bothered about the lack of privacy, I got rid of my boots and jeans and carefully sat down in my wheelchair. It was still perfect. I could still move my arms. I could still breathe and lean and twist as much as I usually can and it wasn't at risk of tangling in the wheels. I stood up again. It was even the right length, and it didn't interfere with where I need my stick to be.

I tried on the other dress, just to be certain that it wasn't simply a case of me being relieved that I was trying on a dress that was comfortable. Nope. The second dress was nice enough as dresses go, but not WOW nice. I put the first dress back on. Miles better.

After a bit of consideration, FMIL and I decided that we'd tried on a truckload of dresses, this was the best one by far, we weren't likely to top it unless we got into the realm of full-on bespoke dresses and even then it wasn't guaranteed... so I bought it.

I'm not at liberty to disclose any major details about it (if Steve finds out what it looks like, FMIL will kill us both) although if anyone's interested, compared against a Dulux colour chart the nearest matching shade is "chalk burst".

I was a little bit anxious about phoning Eternal Bride to tell them I wasn't buying my dress from them after all, but they continued to impress me with her polite, friendly, professional approach and I really can't praise them enough. Even though it was Sonique who happened to stock the actual dress I chose, it was Eternal Bride, and particularly Debbie, who made wedding dress shopping a fun and accessible experience for me, and I'd recommend them to anyone.

Done/arranged/have a PLN:
Registrars
Venue
Food and drink
Photography
Bouncy castle
Balloon swords
Hair (sort of, I have a stylist but not a style) and makeup
Gloves (in progress)
Dress!

Still not even properly thought about:
Ceremony options
Rings
Invitations
All the flowers
Decorative balloons
Shoes, lingerie and jewellery
Nice walking stick
Table decorations
Venue floor plan

Pointless Invention

Today I saw what is possibly the most pointless piece of "time-saving" technology ever.

Sainsburys are trialling Prescription Vending Machines. You log in with your fingerprint and/or ID number, put your prescription into the machine, and get your drugs out.

On the face of it, wonderful. I get pretty much the same incredibly common drugs every four weeks and it would save me about twenty minutes a month if I could insert my prescription into a slot with one hand and pick up my tablets with the other.

Then I saw this BBC piece on how it actually works (that link goes to a video piece, I haven't yet found a written article). I'll do a step-by-step description, with what happens when I use the human pharmacy in italic text and the way the machine works in bold.

I go to the pharmacy counter, write the date and sign the prescription form, and hand it to a pharmacy worker (not the pharmacist) who tells me how long it is likely to take. If it's five minutes, I hang around and wait, if it's half an hour they give me a collection ticket and I'll find something else to do and come back later.
I go to the pharmacy vending machine, write the date and sign the prescription form. I mess about for a little while logging into the system (assuming I'm at a height where I can see the screen, and have a level of vision which allows me to see and use a touch-screen interface). Then I put my prescription into a special envelope (assuming there's nothing wrong with my hands)and post it into the little slot. The machine prints off a collection ticket telling me how long I will have to wait.

So far, the machine is taking longer. But what happens next is even better - and it ensures that the wait will never be as short as five minutes. Let's assume my waiting time is 30 minutes and I've wandered off...

The pharmacy assistant places my prescription at the back of a prescriptions box. The pharmacist himself is taking prescriptions from the front and dealing with them one by one. Eventually he gets to mine. He enters my prescriptions into the computer, to make sure none of them clash (this extra layer of checking by a fresh person and a separate computer is why GPs don't tend to give out drugs directly), measures out the drugs, puts them into a paper bag, seals it with a label with my name and NHS number printed on it, and places it onto a shelf which I believe is organised alphabetically for last name.
The pharmacist at the back of the machine - yes, the machine is dependent on a human being at the back of it - retrieves my special envelope, opens it, and takes out my prescription. He enters my prescriptions into the computer (is this sounding familiar yet?), measures out the drugs, puts them into a plastic baggie with my name and NHS number printed on it, and places this into the machine, which may or may not be organised alphabetically, who knows?

Yes, in true mechanical Turk style, there's still an actual qualified pharmacist doing all the actual work. The machine is just a glorified drop-box. So far the processing system is no more automated than it's been for the last ten years or so. They've just added an extra layer of ID-checking that's going to make it difficult for shorter people, people using wheelchairs, people who have trouble with their hands, people who can't see or use touch-screens, and people who are too ill to come out to collect prescriptions and have to send a friend or assistant. I bet the thing talks as well, just to exclude those with impaired hearing/auditory processing too - they might as well try and get the full house.

Anyway, half an hour or more passes and I come back to the pharmacy...

I confirm my name to the pharmacy assistant. They retrieve my bag of drugs from the shelf of prepared prescriptions, ask me to confirm my address and date of birth, and hand it over. They will advise me of any clashes (for instance that antibiotics reduce the effectiveness of the contraceptive pill) and then off I go.
I log in to the system again, assuming as before that I am able to do such a thing. The machine retrieves my bag of drugs from the high-tech shelf inside, and pushes it into the collection chamber with a little note telling me of any clashes. I open the collection chamber, retrieve my tablets, and off I go.

So it takes longer and is no more reliable than the current system, even assuming that there are no mechanical or software issues with the machines - self-checkout, anyone? Nevertheless their claim that it will enable people to skip the queues is probably correct, as the sick or disabled people unable to use the machine will still be queuing at the normal pharmacy. It's not even as if they'll save that much on staffing costs, as the machine still requires a pharmacist to do the bulk of the work and presumably an operator to empty, fill and maintain the thing.

I love technology but I really cannot see the point of this one.

Stratford Chain Ferry

Just a very quick post about a little adventure Steve and I had at the weekend.

We went to Stratford-upon-Avon on Sunday afternoon, and a lovely place it is, especially in the summertime. We may also have been aided by the fact that there was some sort of sporting event happening that afternoon, so we were very nearly the only English people wandering about.

Thanks to the Chair Of Awesome, I no longer have to make the choice between staying within a few metres of the car, experiencing incredible pain, or assigning someone else the job of pushing me. So for the first time, we were really able to wander about which was great.

We enjoyed a bit of a stroll along the bank of the Avon, and then we spotted the ferry.

Built in 1937, the chain ferry is safely pre-DDA and I'd pretty much dismissed it out of hand when I heard about it as "things that just aren't designed for wheelchairs" - I don't tend to expect anything pre-war to have great access. Nevertheless we decided to mosey over for a look because, if nothing else, it's an engineering curiosity and worth a look.

I was quite impressed, then, to see that there were decent not-too-steep side-on ramps down to the jetties on both sides, and that the operator's answer to "can we bring the wheelchair aboard?" was "of course!"

The fare was a princely 50p per person.

The ferry itself does have three steps down into it at each end, but there are sturdy rails all over it that come right up to chest height so there's plenty to grab. Best of all, the operators had almost definitely had some training in disability issues, as their attitude could not have been better (or maybe they're just exceptionally nice young men). One of them physically held the ferry as stable as possible against the bank, and they also did the marvellous thing of asking and offering help for getting me down into the boat rather than grabbing and interfering. The same at the other end. I was really pleased about getting to do something I didn't think I'd be able to do, and thanked the guys for their help - to which one of them replied "it'll be better soon hopefully - we're trying to get a ramp to go into the ferry itself."

Ooh, I felt like applauding, and was a very happy bunny as we trundled away from the jetty towards the Brass Rubbing Centre and the Courtyard Theatre.

I don't know (and haven't been able to easily find out) whether the chain ferry is privately owned and run, or if it's the council, or some kind of conservation charity, or a combination of all the above.

But I was really impressed to see an historic curio making the effort for access in terms of both the physical environment and the staff attitudes, rather than hiding behind its age as a reason for not making any effort at all.

New Chair!

No, I don't have any pictures of it. I've been too busy whirling around in it to take any.

First, on Tuesday afternoon we went to Solihull, a town with a shopping centre that does unusually well on the access front, as well as a significant amount of it being indoors. It was an excellent 'training area'. Solihull also has a Hotel Chocolat. Ahem. Training opportunity. Accessible environment. Learning to use chair. Yes.

Then on Wednesday morning I got to use the chair for one of its specific stated purposes. I went to post a letter. The postbox is about 500m away so this was a trip of approximately 1km.



At this point the freedom went to my head and I decided that, dammit, for no particular reason I was going Up The Hill. Power to maximum. Anti-roll facility on. Leaning forward so that my shoulders were practically touching my knees, to avoid tipping the chair back.

(Honourable mention to the young woman coming out of her house halfway up the hill, who not only asked me if I wanted any help - gaining Good Samaritan points - but also accepted my answer of "no, it's okay thanks, I've got batteries," without any fuss, which is perfect.)

I got there:

The focus on my phone's camera isn't really set up for rolling vistas and the weather wasn't great, but you can see the significant gradient of the hill and a hint of the lovely fields beyond.

Admittedly I was a bit out of breath by that point. The salesman who took me for the test drive had used a chair that really was very different, and I should not have taken his word for it that it was comparable. On the other hand, my Access to Work grant specified that I was allowed this exact chair and no other, so it's not like it would have made a difference to the sale.

But of course I had a chair with me, so it was perfectly okay to just sit at the top of the hill and relax for a few minutes. And then... then, I got to go down the hill. The wheels are very clever indeed, the tiniest pressures were enough to make sure my descent was calm, controlled, and effortless. Then it was the 500m route home.

('Special' mention to the woman in the huge tank of a car who pulled up alongside me on my road, and then sat there impatiently waving me past. I was confused, because I wasn't in front of a driveway or anything, so I just smiled and carried on. Then as soon as I was past, she parked her behemoth up on the pavement - the entire pavement - neatly blocking the path for any other wheelchair user or person with a pushchair, and probably quite a few regular pedestrians. Inconsiderate cow.)

I'm feeling it in my hands (from gripping the push-rims) and my shoulders (from constantly moving back and forth), and I also have that very particular ME/overdid things feeling of a sore throat, random tingly sensations, and lurching vertigo. But it's not as bad as I was expecting and as long as I'm very careful today I should be alright.

Such Tweet Sorrow - applause

Previous posts:
Such Tweet Sorrow posted on April 12th, 2010.
Indescribable posted on April 18th, 2010.

For never was a tale of more woe,
Than this of Juliet, and her Romeo.

That may be true. But this afternoon, when I told Steve that the five-week Twitter production of Such Tweet Sorrow was finally over, and he jokingly asked "was there a happy ending?" the answer, strangely, was Yes.

I mean, okay, four out of six characters died. But the difference in the medium changed the place where the play ended and therefore the feel of the ending.

If you see Romeo and Juliet on stage or film, you barely have time to wipe your eyes at the end of the suicide scene before you are presented with the Prince's summing-up and a curtain call.

In real-time, however... Juliet drank the sleeping draught on Tuesday night. Romeo found her early on Wednesday morning. For about an hour he agonised over what to do... then his not-so-quick drugs took another hour to work, and all we knew was silence until Juliet awoke. She took half an hour to assess the situation, sent out a heartfelt goodbye to her sister (Jess, the "nurse"), and then it was silence again until Jess found the bodies. Those long silences really took an emotional toll on the involved audience (affectionately known as #teamchorus).

Too upset to be delivering a neat and tidy epilogue, Jess spent the afternoon and evening railing at her father and portraying despair in messages that were chillingly close to those sent by the young lovers before their deaths... followed by... silence. Jess being an altered character, no one knew whether she would be likely to do something drastic. I went to bed on Wednesday night half expecting to hear news that she, too, had killed herself - the relief on Thursday morning when she tweeted complaining of a hangover was immense. Especially since Jess was one of the more likeable characters.

Over the course of the morning, Jess (and the audience!) got to grips with the facts of the deaths with the benefit of a night's sleep. The summing-up was then delivered as dialogue between Jess and the Friar and although there was a sense of loss, there was also a sense of survival and new beginnings. It felt like a positive ending.

Apparently there is a curtain call tomorrow, which I am very much looking forward to. If nothing else, I need to tell Charlotte Wakefield that it's just Juliet I couldn't stand, and that since Juliet is now dead, I no longer bear her any ill will. I might have *ahem* been a little bit aggressive about my dislike of Juliet and I really hope the actress doesn't take it personally.

Was this an accessible performance? For me, yes. Certainly it saved me from having to deal with practical access issues in and around Stratford in order to experience an RSC production (although I still want to do that one day). And the beauty of Twitter is that if you need to sleep or medicate or stretch or rest or throw up, all of the play is right there waiting for you to catch up on when you come back. However, there were a lot of tweets, and I know several people had to drop out on that basis - in many ways it is easier to devote two hours of undivided attention to the play in isolation, than to immerse yourself into a production that has more in common with a role-playing game than a theatre visit.

I will definitely want to be involved in another Twitter-Shakespeare project. A large part of that is because it is a case of "being involved" rather than merely "watching". Accessible interactive theatre in your own home, where you respond to the characters and the characters respond to you - it beats TV.

All that remains is to stand and applaud:

The Cast
@romeo_mo - Romeo Montague - James Barrett
@julietcap16 - Juliet Capulet - Charlotte Wakefield
@LaurenceFriar - Laurence Friar - Geoffrey Newland
@mercuteio - Mercutio - Ben Ashton
@tybalt_cap - Tybalt Capulet - Mark Holgate
@Jess_nurse - Jess "Nurse" Capulet - Lu Corfield

Producer
Charles Hunter

Director
Roxana Silbert

Writers
Bethan Marlow
Tim Wright

All at Such_Tweet, The RSC, Mudlark, 4ip, and Screen WM.

My fellow #suchtweet Groundlings including #teamchorus and #mercutiogroupies

and the mysterious @jago_klepto...

BADD 2010 Roundup

As usual, here are my five favourite posts from BADD 2010 so far. Bear in mind that once again the total contributions are well into three figures and I have not managed to read all of them. I may have missed the best post ever.

First up, we have Angelikitten's post about Voluntary Accommodations, exploring the positive difference accommodating attitudes in the workplace can make - and thus highlighting what a barrier negative attitudes become to disabled people who are willing and able to work if they could only rely on such adjustments being made.

Heather at OhWheely posted about those people who don't seem to realise how much more difficult they are making our lives by refusing to do their jobs properly. She also raises the impossibility of fighting every battle and the balancing act of trying to say "this is unacceptable" without sounding like a whinger.

Stephen at Single Lens Reflections brought some much needed comedy relief - and a valid point about two-way assumptions - with his wonderful post Flying the Red Flag of Understanding.

More Than A Mascot is a post from Bethany about the importance of proper, meaningful inclusion rather than sidelining and patronisation of disabled kids in mainstream schools.

And finally, Assiya at For A Fairer Today wrote Submissiveness, a post about having to be cautious because help and acceptance can be very conditional. This one really twanged for me - I am constantly conscious of not wanting to challenge or 'bother' doctors, social workers, etc, for fear that they will withdraw what assistance they do give.

Till next year...

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.