My pity party lasted about an hour. After which I had a sore face from all the gurning and a bored brain after reciting the 'woe is me' mantra for so long. Feeling sorry for yourself is seriously hard work to maintain alongside all the other thoughts in your head shouting 'think me' 'no, think me, I'm a more exciting thought' 'ooo, chocolate' 'ooo, sex'
Today I made it out of the flat and back to the flat without needing to be rescued. Which was a good thing. Not all of my neighbours are cute. I avoided the rescue by not actually going anywhere further than the nearest bench. In the rain. It was high tide and I wanted to see the birds and listen to the waves. Worth every moment even if it did hurt like a bastard. Besides, there was hot chocolate. That's always good. Even if it is the crappy low calorie kind. All the chocolate is not helping my joints. Which will never, ever be good. The impending chocolate ration that is. I think someone should definitely invent a cure for pain which involves special not making you fat chocolate.
So that was high point number one. The bench. As high points go it's not really, you could even call it quite low for a bench. The next one was better. Only cos it involved the related sport of chair standing, water spilling, goldfish hate crime though. A while back I found a little fish bowl in a charity shop. It seemed like a good idea and for some reason I thought Bendycat might like some fish to look at and that's how I ended up with the fish. Fishy and Fish. Don't ask. Bendycat doesn't even like them. Just sits and howls at them in the middle of the night so next door's hideous yappy dogs start barking.
The chair standing, water spilling was cos the fish needed cleaning out. A sensible plan when your legs can't safely hold you up. Well, it seemed more sensible to climb on a chair to empty the bowl bit by bit than to tip the bowl all over myself. Perhaps sensible isn't quite the right word.
The goldfish hate crime was the fluorescent pink ladle I had to use to catch Fishy and Fish. Whoever said goldfish are stupid clearly never spent an afternoon chasing a goldfish round a 5 litre tank with a fluorescent pink ladle. Those fish definitely had better strategies than me. It took ages to catch Fishy, and Fish had definitely learnt from Fishy's experience so cunningly hid behind the water pump thing where the ladle couldn't fit.
If that wasn't bad enough, while I was cleaning the tank and dropping wet fish gravel all over the place I put them in a tiny bowl in the middle of the kitchen table where they swam round in a frenzied pink ladle panic. I thought Fishy was going to kill Fish! I checked but couldn't find Bendycat anywhere so the fishies may well have known something I didn't. They've definitely got PTSD now. Wave a pink coloured thing near the bowl, they go nuts! Although they did that for food anyway. Must be the pink. Hand/ladle. Not a good combination for goldfish. They're still alive though even after all the pink trauma. So that's good.
No chocolate's not though. That's just mean.
I'm currently sat on my sofa with a fixed, rictus grin on my face. I don't cope very well with self pity so I'm operating on the principle that smiling will release some kind of happy hormones just because of the act of smiling. If that's not the case, I can at least enrol myself in a gurning competition.
The reason I'm having a full blown pity party is I've just had to be rescued by a passer by for the fourth time in a week.
The interest rates for a loan from the spoon bank are far more crippling than any loanshark could come ever dream up. I knew that when I made the decision to wear stupid, stupid, oh so pretty, stupid, stupid shoes. I knew that when I made the decision to dance. In not nearly so stupid, or so pretty but quite sensibleish really shoes. I knew it when I decided to stay out late. I knew it and I did it all anyway. It was well worth it, thinking back now puts a genuine smile on my face.
One guest at the pity party is fickle hope. When I put on the stupid shoes, the height of the heel made my hips feel better. Wearing heels changes the position of the hips and pelvis, and for me tips it all into a more comfortable position. Unfortunately wearing heels also translates the most unstable part of my body from my hips to my knees without removing the instability from my hips. Or anywhere else. I was very fortunate that the stupid shoe wearing event coincided with the part of my menstrual cycle when I'm at my least spandy bandy. It's less fortunate that the after effects of all the stupid shoe wearing, stupid dancing, coincide perfectly with my most bendy part of the month.
The self pity, all time pity party guest of honour, is the nagging voice of pain, whispering in my ear, a knowledge I don't want to hear. That my joints have slowly but surely been worsening for months.
Signs reading "No Irish, No Blacks, No Dogs" were a common indicator of the widespread discrimination in Britain as recently as 50 years ago. These days British society is filled with an equally widespread political correctness which insists such attitudes not be displayed. Of course, not displaying attitudes doesn't mean they die out, it just means that people learn not to show such discrimination in public. The popularity of minority parties such as the BNP demonstrate very effectively that such beliefs are still present, and that insisting they not be discussed does nothing except further marginalise certain groups.
Whilst legislation has been passed in an attempt to enforce equality regardless of attitude, it seems that some laws are more important than others*. Widespread, media driven, public furore frequently occurs over issues such as race or sexuality but for some reason discrimination against disabled people is explained away, usually by the very same outraged and righteous individuals.
The Disability Discrimination Act of 1995 (DDA) was supposed to be the answer to this problem. However, unlike other legislation designed to deal with discrimination, The DDA is all bark and very little bite. Legislation, rightly or wrongly enables us to complain to the police if we are verbally abused about our race, sexual orientation, or religion, but just try doing the same if the discrimination or abuse has been experienced because of disability, as Fiona Pilkington and her disabled daughter Francecca discovered to their tragic cost.
When looking at examples of bad practice regarding accessible toilets for the Bog Off series I don't usually name the business involved. I live in a very small area and most are small businesses without the resources to make expensive adaptations. It feels very unfair to name and shame without having given the business a chance to put their point of view. It's different when it's bigger businesses or the public sector as they do not have the same paucity of resources and frankly should be setting the example by upholding the law to which all businesses are obliged to adhere. The business featured in this Bog Off! is in such flagrant disregard of the law that I'm taking the step of discussing it publicly.
The Leverhulme Hotel is a recently opened luxury hotel in the historic village of Port Sunlight, which has been restored aimed firmly at the wedding market. Beautiful location, beautiful building, what's not to like, right?
Well, it's pretty. I'll give the owners that. Just don't expect to be able to experience it's prettiness if you're disabled, older, injured, or in any way not fully fit. Obviously the hotel owners thought that disabled people wouldn't want to get married, or even attend weddings because access clearly wasn't even a token afterthought when they planned how to convert the building.
Upon arrival I asked the very young staff member where the disabled entrance was. She looked most bewildered** and had to think about it before informing me there was an entrance but it was "all the way round there" I'm still no wiser as to where "there" is, but I'm guessing it was a bit of a trek as there was no visible sign of it. There were two steps up to the entrance, nice looking stone steps which, in keeping with many older luxury properties, are of the low rise variety. There was no handrail on either side of the entrance, and it later turned out there were no handrails on any of the many sets of double steps I saw around the building. Steps which were impossible to avoid. Steps which were all made out of nice slippery surfaces like highly polished marble. So, not only was there no wheelchair access, but if you happen to be a bride wearing unaccustomed heels, a little older and unsteady on your feet, a bit tipsy in the way people usually are at weddings, or even carrying a baby, forget it...there was nothing you could hold on to for balance***
Not that there was any disabled parking either. Fair enough, a great yellow wheelchair symbol painted on the ground next to the entrance might not look as pretty in the wedding photos as the odd, water sculpturey thing the local chavs consider their own during the hours of darkness, but there's no excuse for not having accessible parking spaces alongside the rest of the parking. If there were any I obviously couldn't walk far enough to notice them.
Unfortunately I cannot feature a photograph of the disabled toilet as is customary for the rest of the Bog Off series. No, not because I'd self medicated too much to remember to take the photo, but because there was no disabled toilet. The, again, very young staff member I asked, looked seriously uncomfortable when she informed me the venue didn't have one. I'm in the very fortunate position of being able to manage without grab rails**** or supported seating, which as long term blog readers know is a good thing given my ability at times to wee for Britain! Many people aren't so lucky, and what they were expected to do had they been attending an event there is anyone's guess. There was absolutely no way a wheelchair user would have been able to use the existing toilets as the cubicles were too narrow, and the toilet too far from the door for even that kind of lack of dignity emergency wee. I wouldn't fancy trying to use the toilet if you had any kind of visual impairment either as it was quite dark once inside the cubicle. There didn't even appear to be any baby changing facilities in the ladies, although they could have been hidden behind the 'out of order' sign on one of the toilet doors.
Perhaps the Leverhulme Hotel plan to build an accessible toilet as and when they eventually complete building the ballroom they book for wedding parties? For a business so dependent upon good publicity they'd do well to address the complaints people have been registering about the lack of ballroom for quite some time.
I'm not sure if there is a lift anywhere in the building, but the stairs to the upper floor at least had handrails on either side. Which is unfortunately about the most positive thing I can find to say about the access.
As the ballroom at Leverhulme Hotel is still literally a building site, the wedding guests were seated in a much smaller room. Although there were only about 60 people at the wedding this still meant squeezing an additional table into the room so it was best to be on friendly terms with all present! Happily the waiter was wearing deodorant as his armpit was worryingly close to my face on several occasions.
Food was served buffet style in the adjoining room. Leaving the table room to enter the food room there was a slight step down, then a slight step back up right next to the beveled metal edge of the dance floor, all within about 50cms of each other. Fortunately another guest had a reasonable grip on my arm as I stumbled trying to get into the food room, had I been alone I would have gone flying. I was concerned someone else might trip there, which happily didn't occur, but I saw lots of people catch their feet and stumble as they moved between the two rooms.
The lack of attention to detail was evident throughout the hotel, as was the absence of more senior staff members. The biggest day of a couple's life is not the time to focus on anything other than the fabulousness of the day, and I'm fortunate to have the kind of disability where I can find various ways to manage. That is not the case with many disabilities. I wonder, how many people would feel forced to suffer in silence, or be unable to even attend their loved one's wedding, if the Leverhulme Hotel don't improve their facilities to include access for everyone.
*The way our MP's have behaved should mean this is no surprise to anyone!
**Which is understandable because as we all know, you can't tell by looking at me!
***Unless you follow my example and insist on being escorted everywhere by the nearest man you could find who was willing to lend you his arm!
****toilet roll holders work reasonably well for the purpose if you don't weigh much!
This Bog Off was photographed at a local pub. It had the typical problem of the help cord being tied up out of reach of anyone on the floor. Also, although this was a toilet with specific extra support provided for a disabled person, as is all too common the placing of the grab rails and sanitary disposal bin made it impossible for a wheelchair user to safely transfer back and forth.
However, as the title indicates the biggest problem with this loo was one which couldn't be photographed....and count yourselves lucky it couldn't! Oh my! This toilet stank, it smelled bad enough to make you retch! To be fair, it was a very hot day in July, however looking at the bin overflowing with soiled nappies it clearly hadn't occurred to anyone that they might need to empty the bin once in a while.
Which was a great shame, because it was a lovely pub, with a beautiful beer garden and generally access was reasonable. However, rightly or wrongly like many people I always that if the toilets aren't clean then the kitchen probably won't be clean enough either and that's enough to put me off going back there!
This weekend brought the much anticipated wedding of Oldest Friend. It was a lovely, joyful day; the bride beautiful, groom handsome and children charmingly underwhelmed by it all. It was also the first time I'd seen some of the other guests for more than 10 years.
As we all know conversation on these occasions is pretty much limited to the school of "How are you?" I've now got a fairly standard 'yes I'm well thanks, had some health problems, interfered with career but all is good' then quickly deflect the questions back to the other person kind of answer. Upon reflection I decided that the only advantage of attending a wedding solo is not having to endure additional interminable questions about my lack of partner!
Almost without exception every person I mentioned having experienced health problems to replied with the statement "You can't tell by looking" or some variation of. Five words that seem so innocuous yet always leave me slightly flummoxed, because how on earth are you supposed to respond to that when you're not even sure what its supposed to mean?!
I've pondered this question on many an occasion but I'm still not sure of the answer. The popularity of But you don't look sick and the spoon theory indicate that the "you can't tell by looking" problem is a common one both for those with invisible disabilities and those without.
As far as I can make out, "You can't tell by looking" means any or all of the following things;
- Shut up! Seriously, shut the fuck up! You look fine, great even. I don't believe you have anything wrong with you at all. Shut up!
- Don't worry, if you're not drooling, pissing, shitting or any manner of 'anti social' activities it's ok to be a crip. After all, you look hot you know!
- I'm jealous of the way you look and secretly delighted to hear you've been seriously ill.
- Disabled people look....well, disabled. You don't. Therefore you are not disabled and my vision of the world can remain happily ignorant.
- OMFG! If people who look well can be disabled or sick it could happen to me, or someone I love...cos they look just fine too. OMFG my brain is going to explode and drip steadily from my ears.
- I'm really saddened to hear you've experienced health problems and the only way I can think of to express my empathy is to tell you how wonderful you look.
The reason this is so important is that most disabilities are invisible, which inevitably leads to an overall impression that there aren't many disabled people around so all those on benefits must be fraudsters. This kind of attitude can be so pervasive that I've experienced it on many an occasion from members of the medical profession. So much so that I suspect it's also linked to some of our most basic instincts and senses of how we humans make sense of the world.
It's particularly important to me to minimise the visible effects of Ehlers Danlos Syndrome. Not because I'm embarassed or lacking acceptance, but because it's better for both my physical and mental health not to focus upon it. I don't care if people see me limp, fall or use a wheelchair, and, as happened this afternoon I have no real problems with asking a stranger to help me should I need it*. What's important to me is how I deal with the symptoms of my condition. As EDS has no cure and in a sense no treatment psychological attitude is all. Over the years I've found that the more I smile the better I feel and the less I think about it or mention it the easier it is to deal with. I'll howl over major dislocations or occasionally have a whinge but overall I prefer not to bring it up and just get on with things as best I can.
The unfortunate consequence of that kind of attitude is that people in my real world life** generally have no idea just how extensive my disabilities are. Couple that with an invisible disability and I suspect I'll be hearing "You can't tell by looking" for many a year to come!
*Being rather cute had nothing to do with it!
**I know, and you know that blogging is the real world...but non bloggers just don't get that!
