|There are times when I get these really insane ideas and wonder if they might actually work - and if people would really be interested in the results.|
The idea you are about to witness the results of was me wondering if I could show you what challenges I face when I am out and about - a kind of attempt to "lend you my eyes" if you will. I decided to take my Canon digital "Point and Shoot" camera on my walk from my driveway to the bus stop where I catch the bus into town and video what I see (as well as giving you a description of how things affect me).
Please Note - Although it sounds like the camera operator is about to keel over and die at any moment I had a cold at the time of filming (I also forgot to put my mobile on silent - apologies for the message alerts you hear).
I decided to show you precisely why I hate walking around in "wall-to-wall sunshine".
Click on the link to start the video. Then read my words.
Getting down my driveway is the easy bit. Then (as Kevin Bridges would say) I begin to encounter some difficulties.
The first difficulty is - funnily enough - the sunshine. More to the point - it is the angle of the sunshine in relation to where I am standing. If I wanted to cross the road I would be OK looking to my right - nice normal lighting conditions. I can see all known traffic and other potential obstacles on my righthand side. My lefthand side is a completely different story. You want to run me over??? Just get yourself a bicycle and ride towards me from my lefthand side on this road in bright sunshine and I will not see you until you are almost running me over (this actually happened one morning - the cyclist wasn't too happy with me. They muttered something about me not looking before I crossed the road. The trouble was - I did look both ways before I crossed the road. Not my fault the cyclist wasn't the size of a useful object - as in a car.)
So - we have turned left. If you have been concentrating whilst reading the above paragraph you will know that cyclists (and other small "Alien" beings - walking humans, dogs, etc) become invisible until I get very close to them. There is something else which changes though. Landmarks go for a walk - or lose all recogniseable distinguishing features (windows, doors, colour scheme of exterior paintwork, etc).
The next "obstacle" we see is the alleyway between two blocks of flats. (Actually - this can confuse me even if it isn't sunny.) You might be able to aim directly for the "hole" as soon as you can see the end of the carpark. To me - that looks like a black fence blocking the way out of the carpark (good job I have known this route almost my entire life). I always get a shock when humans literally appear out of the woodwork walking towards me.
At the other end of the alleyway is a brick wall. Sometimes there is a car parked opposite the end of the alleyway (as well as one just where I turn right out of the alleyway). Anything parked anywhere near the end of the alleyway is initially computed as blocking it off until I can actually see the road or the pavement so I can visually "measure" the distance between me and the obstacle. (See what I mean about landmarks losing all known distinguishing features??? Trust me - there is a road and then a brickwall.)
After I turn right out of the alleyway we come to my "favourite" obstacle - a car partially draped across a pavement. Now - there is a difference between my perception of the distance between the side of the car and the wall and the camera's perception of the distance. The camera suggests there is enough space for me to get through. My eyes - on the other hand - don't. The colour of the car facing us is actually hindering me - it looks bigger to me than it really is. To the point where - on first seeing the car it appears to be some kind of Transit-type van. The red car actually looks as though it is parked closer behind the other car.
Luckily I know this is a cul-de-sac so I am reasonably happy walking in the road to navigate my way around the car. I am not so happy when I see lorries making deliveries to the CO-OP blocking the pavement nearer the junction with the main road. In fact, I can get extremely scared when that happens. (One day I nearly walked right into the back of a car which was parked almost on the corner as I came around the corner on my way home from the CO-OP. I am sure there is a legal distance you have to park away from junctions???)
The rest of the video just shows the pavement and the road. However, it does show two things which you may not take any notice of (correction - if you have 20/20 vision - you probably won't take any notice of this). There is one thing which can totally disorient me and one thing which can cause me difficulties which may come under the "Slips,Trips, and Falls" part of a Risk Assessment. And - you may be surprised to learn that they are not all that different when it comes to how my brain computes them.
The disorienting thing in the video (although it is not to a "dangerous" extent like it would be if there weren't any buildings in the vicinity) is shadows on the ground. Trust me - the sun hits a lampost at the wrong angle and the resulting shadow can appear like a solid barrier blocking my way (or it can look like someone has helpfully dug a trench in the tarmac and retarmacked the hole).
The "Risk Assessment problem" in the video is one I end up encountering just about everywhere I go. Kerbing. Correction - Grey lines on ground which may or may not be kerbing indicating a drop between two levels. (Trust me - you do not want my opinion on any ornamental paving you may choose as part of any landscaping you may do. Let's just say I think my life would be a lot easier if grey kerbstones were reserved for the edges of pavements. There are times when I seriously think people should be imprisoned for misuse of grey kerbstones.)
Well, we have come to the end of this "trip". I hope you found it interesting. I may try another video at some point showing something else which poses me with a challenge.
Before I finish I wanted to share this photo which shows what the view looks like when I turn left out of my driveway and walk a few metres when it isn't "wall-to-wall" sunshine. I prefer this view - I can actually see the traffic properly.
This blog post was originally typed on the Simple Solutions blog but I thought it was important enough to share with you on here.
You are probably looking at the first part of the title to today’s blog post and wondering how I dare to link two totally unconnected subjects??? Well, actually those subjects are more connected than you think. Not just because inadequate consumption of fruit and vegetables can land you in hospital either.
Apparently it is only the lazy people – or those with more money than sense – who buy pre-prepared vegetables??? Not forgetting those of us who don’t care about the environmental impact of the excessive packaging on the aforementioned items???
Well, if I was feeling uncharitable towards the able-bodied, non-visually-impaired, members of society, I could argue that the people who agree with that argument might have a point.
However, then I would be guilty of the same thing as them – a massive generalisation. You see there are some people for whom the act of preparing vegetables for consumption is either downright dangerous or physically impossible. (I fit into the category where it can be downright dangerous.). I am talking about people with limited function in their hands, people with poor sight, and other disabilities.
I prefer to do things for myself when I can. This includes cooking. Therefore, if given a choice between attempting to munch raw parsnips or finding a pre-prepared serving of parsnips which I can stick in the microwave and cook, I will go for the second option.
I have read somewhere about there being an issue of “privilege” coming into play on this subject. Sorry guys – it’s not “privilege”. What it is is a lack of education about how Disabled people can (and do) function reasonably well on our own if you give us the required help – as well as how that help can be seen as an unnecessary “luxury” – particularly when the “able-bodied” commandeer it for their own use.
What has all the above got to do with the NHS Crisis??? (Apart from the availability of pre-prepared vegetables ensuring I stay uninjured – or rather – uncut whilst cooking???)
There is an unspoken subject in the NHS Crisis which I think urgently needs to be addressed. And I was as culpable as anyone before I ended up in my current situation.
Did I bother my GP with inconsequential symptoms which I could have treated at home??? Nope.
Did I use the Ambulance service inappropriately for minor injuries??? Nope.
Did I clog up A&E as a result of a minor illness??? Nope.
In fact, my absolute hatred of hospitals and Medical Professionals – coupled with being told by the Mainstream Media (and the NHS themselves) only to use things like ambulances and A&E in an emergency – led me to leave seeking medical attention until it was almost too late to help me.
It is all very well to praise those of us who try our best not to put any pressure on the NHS with minor complaints, injuries, and illnesses. However, if we leave things to cure themselves we could actually cause more expense for the NHS when the opposite occurs and our health deteriorates drastically.
As with the pre-prepared vegetables – there needs to be a discussion about the appropriate use of NHS resources which includes those of us who don’t like bothering Medical Professionals even when we are literally dying on our feet, as well as the ones who treat the NHS as their personal slaves.
The funny thing is – I actually followed the advice I had been force-fed on the correct use of the NHS and ambulances. This meant that I didn’t dial 999 because I could walk far enough to get into a taxi. However, when I got a booklet about what to do with symptoms of “heart failure” when they go haywire, I learned that my exact level of breathless when I took myself to A&E would have made me a prime candidate for a journey on a small bed with blue flashing lights. The fact that I could walk was beside the point.
We need a proper discussion as to what exactly constitutes a medical emergency with parameters which are clearly understood by everyone. We also need to encourage the “properly poorly” to seek medical attention without feeling uncomfortable about wasting NHS resources.
The thing I find really annoying is – when certain diseases or illnesses become the focus of Media attention – the lists of symptoms sometimes include things I have had my entire life without becoming poorly as a result of them. Blurred vision, sensitivity to light, and spots in front of the eyes, are all apparently symptoms which should send me rushing to A&E??? Can someone please ask the Media to add the caveat “if you have never experienced them before” to their urging to seek medical attention???
In both the “pre-prepared vegetables” discussion and the “NHS Crisis” there is a lack of education about the hidden people which are affected by the arguments. Until all sides are included – and heard – we are never going to get a useful outcome to either debate.
|If you have read this blog before, you know me personally (as in - in real life), or you are connected with me on any form of Social Media, you will know one thing about me more than anything – except possibly my name.|
The thing you will know about me is that I hate bullying and discrimination – as well as being passionate about Disabilities.
You can find me on Twitter under @inkyworld, or on Facebook as “Ineke Poultney”, where you can be bored to sleep by further ramblings on any and every topic which passes through my mind at any given moment (the best cure for insomnia can be found on Facebook). If that little lot doesn't bore you to sleep quickly enough may I also recommend simplesolutionsconsultancy.wordpress.com/ where you can read yet more of my ramblings. There - your insomnia should be well and truly cured now.
Actually – it is Twitter I wanted to talk to you about in this blog post. Well, not Twitter itself exactly – more something which I found on Twitter that pleasantly surprised me (I was shocked when I learned how young the person was who put it up).
I was looking on Twitter one day when I found that one of the Twittercops I follow had retweeted something extremely interesting. A girl going by the Twittername of @TheMiniChaos had tweeted the most amazing takedown of the idea of the “perfect body”. The only reason I knew she couldn't be anywhere near as elderly as I am was because the Twittercop who had retweeted it happened to be her Dad. However, I was stunned when she told me she is 15 years old. Her argument and logic was better than anything I could ever come up with and her use of language was very eloquent and mature.
As someone who has got body-confidence issues stemming from the scars on my body I honestly wish that @TheMiniChaos could have been around when I was growing up. To paraphrase what she said somewhat – it doesn't matter what your body looks like, you are OK as you are.
I have blogged several times before about how we are conditioned into believing we have to be a certain way, look a certain way, etc, in order to be with the “in-crowd” - and for those of us who cannot conform for whatever reason this means life on the outside.
One of my friends had a go at me on Facebook when I posted something about wishing I could walk around in public without any form of corrective lenses whatsoever (I didn't mean I wanted 20/20 vision, in fact I meant the exact opposite). This person said that I was wasting my writing skills and should be more positive about disability. Hmm – I was merely trying to point out that I wanted to be able to walk around like anybody else who doesn't wear glasses sometimes. I honestly find corrective e)yewear tiresome sometimes – what with taking glasses off and putting them on, cleaning them, waiting for them to defog when they get steamed up, etc. Sometimes I actually find it easier to read without them on.
We are all built differently – I wish I was at least 10 inches shorter for a start (I hate being taller than average for a human of the female species in England). I am happiest when the people I am with make me feel short when I am standing up (this means that I am mostly stuck with men over 6ft 2inches tall). Let's just say I find the aftermath of having a permanent chest-drain taken out (as in the excruciating pain after the anaesthetic wears off) 100 times more pleasurable than the idea of going “proper” clothes shopping. My favourite kind of clothes shopping is where I go shopping for something completely different but an item of clothing captures my interest. Going shopping specifically to purchase items of clothing for myself is my worst nightmare. I don't mind being towed along by someone else who is going “proper” clothes shopping – in fact – I find that quite fun. Yes – I know – I'm strange.
I have never been too fussed about what size of clothes I can fit into. If you have ever seen me you will know I am a fully paid up member of “Scruffs Anonymous” - I go for comfort about everything else. Even now that I am the thinnest I have ever been since I was at school I still prefer to buy stuff with “room” in it (most of my favourite clothes are approx 2 sizes too big for me now). Even the jeans I am currently wearing are a victim of my “I need room” theory – I was going to get them in a UK size 12 (European size 40) when I realised they have a button and a zip (I thought they were the old fashioned “stiff” jeans – as in the ones which resemble blue cardboard when you first put them on) and not an obvious elasticated waist. So I got a UK size 14 (European size 42). OK so far – until I realised that they were actually stretchy in the waistband and I could actually take them off without undoing the button or zip. Turned out the legs of the ones I am wearing were actually longer than the size 12's which I was originally going to buy (I had never seen a 30” inside leg measurement in a pair of trousers on sale in Primark before).
As long as you feel happy with how you look I don't see what right anybody else has to pass judgement on it. It is what's on the inside that really matters. It is better to be liked for being kind than for being picture perfect.
|This blog post has been bubbling away in the back of my brain for a few months now. It is also a blog post which I am actually the least qualified person to write as I have no direct experience of the topic – as yet.|
A few months ago we were talking at Scribbles when Mike Southwell told us a horrifying story about a man who he knew and their Bank Account.
I cannot remember the exact details of the whole story but I will tell you what I do remember.
The man was what would be considered a Vulnerable Adult. He also had a Bank Account. For some reason (which escapes me at the moment) if the man wanted to get some money out of an ATM he asked passing strangers to type his PIN in. Eventually, it was noticed that quite substantial amounts of money had gone missing from his Bank Account (the man only withdrew small amounts). This is where the problem started.
As Mike pointed out – Banks don't disclose details of Bank Accounts to anybody except the person named as the Account Holder. That is fair enough you might say – and I would agree with you in most cases.
But what happens when you have someone with Bipolar who is in their Manic cycle, or, like Mike's friend above, they are seen as having Mental capacity but need physical help with certain things??? Or if they can be classed as a Vulnerable Adult for any other reason???
At the moment there only appear to be two solutions to the problem (both of which remove the independence of the vulnerable person to a greater or lesser extent). You can either go for “Power of Attorney” or you can open a joint Bank Account.
However, they are both things you have to do. The Bank wouldn't get involved in any other way (except when they start charging for unauthorised overdrafts).
I was discussing this with another friend of mine whose son is classed as a Vulnerable Adult, and she confirmed that she will not be informed about anything connected with her son's Bank Account. I asked another friend – who has experience of dealing with Vulnerable people both as a Police Officer and in one of his other roles – who confirmed what I stated above about the Power of Attorney and the Joint Bank Account are true.
There needs to be a system in place where the Account Holder (or a relative) can nominate someone for the Bank to contact in the event of suspicious or unusual transactions. A bit like arranging for the Bank to contact you if you make a large purchase if you have previously been a victim of Identity Theft. Instead of the onus always being on the friends and relatives of the Account holder to know that they need Power of Attorney or a Joint Bank Account – which many do not realise until it is too late.
How can a Vulnerable Adult (who wishes to keep as much of their independence as possible) be assisted to achieve this???
Also, what happens when the Account Holder becomes so incapacitated they end up in hospital, or deceased, before anybody realises what has been going on???
The entire Banking System needs a total overhaul to put the Account Holders (and their nominated representatives) in charge – or at least stop the nominated representatives from having to jump through legal loopholes in order to find out what is going on.
|I wouldn't usually put a “Trigger Warning” on my Blogposts but this one definitely needs one. It contains thoughts of a Disturbing Nature as well as touching on the subject of Suicide.|
There are two things about me which can become apparent very quickly in certain situations – I will fight for my friends and I am stubborn. When I say the second one I definitely mean it – let's just say that I wouldn't waste my breath trying to talk me out of something if I really want to do it, if I were you.
My stubbornness can be a very bad thing (especially if you are at the opposite side of it) but it did indirectly save someone's life.
I have got a friend who has an Alphabet Soup of Mental Health issues (and when I say “Alphabet Soup” I mean I have lost track of the acronyms for them). I am not going to name my friend, or give any identifying details about them, because they are not really relevant to the blog post – what I will say is that they gave their permission for me to write this blog post,
When it comes to Mental Health I fall into the “Uneducated Idiot” category. As in – I have suffered from Depression myself, I have friends who have Mental Health issues, and one of my friends is a Clinical Psychologist, but that is the extent of my knowledge of the subject. Basically – I am the last person you would put in charge of a situation where someone is suicidal because I am not qualified to deal with it – at least, given a choice between me and a group of Mental Health Professionals, I hope people would go with the Mental Health Professionals. And I would hope the Mental Health (and medical) Professionals would actually do their job.
Unfortunately, personal experience of finding myself on “Suicide Watch” via Twitter, on someone living in Cornwall (not very useful seeing as I live in Leicester), in the early hours of last Friday morning, tells me a totally different story.
The really heartbreaking thing is that the situation could have been stopped from getting so bad on Thursday afternoon (the fact that the situation could have been prevented from getting anywhere near that stage years ago is beside the point). All my friend's former GP had to do was to prescribe something called “PRN” when my friend asked them to. Instead the GP said they couldn't do it without speaking to my friend's Psychiatrist.
A side note is that my friend had asked his Mental Health Co-ordinator (aka Social Worker) to ask his GP not to prescribe a month's worth of tablets because my friend knew they were at risk of overdosing – the message was not passed on – with foreseeable consequences.
The funny thing is – before Thursday night/Friday morning my friend had kept trying to get rid of me because (according to them) “everybody else leaves me”. (Hmm, not exactly the best thing to say to me when you are in a vulnerable state – you get more attention not less.)
I feel really uncomfortable in situations where I don't know what on Earth I am supposed to be doing – and trying to keep someone alive long distance is definitely a situation where I hadn't got a clue. (Luckily a mixture of fear, determination, and adrenaline, kicked in – I wasn't going to let my friend die on my watch.) So I kept my friend talking and distracting them.
It was only when I went to bed on Friday night that I started to think that I could actually have made the situation a whole lot worse if I had said the wrong thing.
One good thing has come out of the situation though (apart from my friend not dying on me) – at least now my friend realises that I won't walk away when the going gets tough (I get more chatty instead).
It is a damning indictment of the Mental Health Services where my friend lives when someone like me is, in effect, left to do their job from so far away.
I could talk about the lack of resources as far as Mental Health Services are concerned – and many people would agree with me. However – from where I am sitting as I type this – that is not the only problem. The other problem is that Mental Health should be seen as a vocation instead of a career. There are too many Professionals in the Mental Health “Industry” who really are not suited to the work because they are not “people-oriented”. We are dealing with the lives of very vulnerable people here. Before you ask – no I wouldn't want to do the job of a Mental Health professional because I am honestly not cut out for it.
We need a properly resourced Mental Health Service – both in terms of financial resources and human resources.
You may think that me typing this blog post is inappropriate and I should leave it to people with personal experience of Mental Health Services (as in Service Users or Professionals) but I would say you are totally wrong. I have another friend who has Bipolar and I have seen her wearing a t-shirt with a very appropriate slogan on it “We all have Mental Health”. I understood this to mean that we all also have a responsibility to speak up for those who are unable to speak up for themselves.
|Sometimes I do things which even surprise me. Personally I hold one of the people who I work with responsible for the latest episode of “Inky's Adventures”. Well if they hadn't advertised the fact they were within a 50 mile radius of me (and I knew they were accessible by bus), I wouldn't have gone to find them.|
You may remember I do some blogging for a company called “Simple Solutions”??? This company is based down in Fleet (in Hampshire). Living in Leicester and being unable to drive makes getting to anywhere on the other side of London in a reasonable time-frame an expensive venture. This meant that – although I had spoken to both the people I work with on the telephone (as well as keeping in contact via Social Media and email) – I had never actually met either Roger or Lucy.
My latest adventure was to change that.
Roger and Lucy went to the “Emergency Services Show” at the NEC. Now – there was something I found puzzling about this. I had known that Roger had been in the Police (Inspector Nield – as he was then – was the reason I started working with Simple Solutions in the first place, after contacting him on Twitter), I also had had an idea that Lucy (his wife) had also been in the Police. However, I have never seen a Police Officer in a red uniform before (on the first photo of himself that he posted on either Twitter or Facebook from his time at the NEC – Roger was wearing a distinctly red t-shirt).
So – off I went to the NEC.
Between you and me I was actually expecting not to be allowed anywhere near the exhibition – due to one minor difference between myself and Roger. I have never worked for any Emergency Service. Until I had found Lucy I was actually convinced that I was going to get kicked out – more precisely – I was on the verge of abandoning my mission myself as I felt out of place.
Anyway – I eventually found Lucy standing at a stall (I really love surprising people by being where they least expect to find me – when I said “Hi Lucy” the smile on her face made my adventure worthwhile). She was wearing the same sort of t-shirt as Roger had been wearing on the photo – turned out that they were there as part of “Surrey Search And Rescue”. Hence the t-shirts.
However, there was also another very good point to their presence at the NEC. Roger is a Trustee of a charity which was set up by someone else with a connection to Simple Solutions. NESM (National Emergency Services Memorial) has been set up to raise money for a memorial to all the members of the Emergency Services in the UK who have been killed.
To find out more about the charity (and buy one of their badges) please visit - www.nesm.org.uk
You may know that I have family connections with both Leicestershire Police and the Rotterdam Police. I also have friends (including Roger and Lucy) who have been serving Police Officers in England. I even have one friend who still is (at time of typing this blog post) a serving Police Officer in Rotterdam – and I have lost count of the amount of serving and ex-Police Officers I follow on Twitter.
You don't need me to tell you that the Police (and the other Emergency Services) put their lives on the line every time they go to work. (If I hear about an incident involving a Police Officer in an area where I know one of my friends works I get worried – even if I have never met the Officer concerned.)
There needs to be some public form of recognition of the sacrifice made by the Officers who have lost their lives – apart from people lining the streets at the funerals.
Yes – I know my link with “NESM” can best be described as tenuous. However, one thing which cannot be described as half-hearted is my support for this idea.
I was just thinking – we have things like “Help For Heroes”, “Vulnerable Veterans”, etc, to help ex-Military people but is there anything to help ex-Police Officers who end up having to leave due to physical or mental health issues they sustained whilst on duty??? I know there is a charity to help their dependants – but what about the Officers themselves???
It is all very well setting up statues and Memorials for Officers who have lost their lives but I think we should also look after the ones who are forced out of the “Job” due to ill health as well.
One other thing before I finish this blog post. Not every Police Officer who dies is killed whilst on duty – some of them kill themselves as a result of the pressures and stress they face as part of their job. A Wise Owl of a serving Police Officer said - either on Twitter or on their personal blog – that they had had to deal with some horrific situations but were practically left to deal with the emotional and mental aftermath they faced on their own. Surely this cannot be allowed to happen???
One of the myths surrounding the Police is that “The Police Are The Public”. Sorry – in my eyes the Police are Superheroes – and should be treated as such.
|I don't know about you but – when I find out that one of my friends is affected by something – I am more likely to go out of my way to (1) learn about it and (2) attend events which either raise money for it or educate people about it.|
This might explain why I attended a “Charity Curry Evening” which was held to raise money for “Bipolar UK” and one other charity which I cannot remember the name of at this precise minute.
I had previously gone through my usual “Travelling in the Evening” checklist (luckily I knew that I would be going there in the light, and it was near a bus stop – if that wasn't the case I wouldn't have gone).
The Curry Evening itself was a great event. The food was delicious and the restaurant it was held in was perfect for someone like me (no cluttered furniture, lighting was adequate).
My attention was grabbed by a leaflet on the table which totally confused me. I don't know whether or not this was because I had come up with something completely different when it comes to asking one of my friends how they are feeling. It could also have been because I hate traffic lights.
This leaflet had a kind of scale on it – with red at both ends, then yellow, and green in the middle. The green bit was supposed to be the “steady” bit – whilst the two red bits were supposed to be the “Danger zone” bits. My problem with that was the fact both “Danger zone” bits have got very different outcomes. The “Mania” bit can be life-threatening without the person intending to delete him or herself from the planet – whilst the “Depression” bit can result in the person intentionally attempting to delete him or herself from the planet. So – unless you can see the scale in front of you – when someone has been trained to name a colour and they say “red” you need to find out which “sort” of red.
I know a few people with Bipolar and one of them has allowed me to experiment on him. Before you get worried – the experiment wasn't likely to harm him. In fact, he told me that it made it easier for him to tell me how he was feeling.
When he had told me a bit about how Bipolar affects him I came up with a rather basic scale so I could find out how he is. (The scale has even been added to recently.)
If you know me you will know I don't like complicated things (especially when I need the information to help with something) – you may also have realised that I have a rather “left-field” way of looking at situations.
So – I wanted to know how my friend was. And I wanted the information in a way I could understand. Forget using the proper terminology – miles too confusing. Instead break it down to the basics. Descriptions work best for me.
The scale which my friend and I now use is as follows;
“Scrape Off The Ceiling” - Hypomania or Mania.
“My friend's name” - Balanced.
“Sad” - Depressed
“Mixed” - Bouncing between “Scrape Off The Ceiling” and “Sad”
“Fell off the Bottom of the Scale” - Suicidal.
(That last one is a very recent addition to the scale.)
There is something which has always puzzled me about things like Mental Health, Disabilities, Cancer, and other “Socially Taboo” subjects regarding health. Why are things always made so complicated when it comes to talking about them??? Why do I never feel entirely comfortable using language which I understand most easily in conversations???
It is a bit like when I was at Schiphol Airport a few years ago. I was speaking to a lady behind a desk in Dutch (I wanted to get some information out of her about something) – then I told her I didn't understand something she had said. The word I used was English (I think it was “sorry?” - which has a slightly different translation in English and Dutch – it certainly wasn't “What?”, which would have been quite acceptable to her ears) – the lady immediately came back in English with “I thought you could speak Dutch”.
If we could find a way of talking about Mental and Physical Health in ways that we feel comfortable with (whilst not offending anybody who may have the conditions under discussion) life would be a lot easier. I suppose I am lucky in having people who I know I can talk to about their conditions in language I understand (as well as asking what must sometimes seem like the stupidest questions they have ever heard) without them causing me any physical damage as a result.
Just out of interest – instead of calling one of my illnesses “Heart Failure” (to me – if something fails it stops working altogether. Whilst my heart isn't operating at anywhere near full capacity the fact that I am typing this blog post indicates it must be working) I wish we could call it something like “Reduced Heart Function”.
Even when illnesses and health conditions seem complicated – surely the best way to deal with them is to keep it as simple as possible???
Or are we doomed to spend our lives having to get translations of “Medical” Terminology which we would otherwise have no Earthly use for???
I speak English and Dutch (I also have a GCSE in French and German). I do not speak “Doctor” or “Medical English”. Humans who attempt to talk to me in either of those languages are likely to be asked for a translation. I can still remember being told by a Dr in Glenfield hospital that I had told someone that I had an “ASD” (or some other three letter acronym) when I was a baby – this was news to me. When I asked for a translation it turned out that I had told them that I had had a hole in the heart – which was correct.
Using simple language might seem like a total waste of time to those who make their living using “Medical English” but – if you are anything like me – people end up feeling a lot more comfortable when they know exactly what is happening (and that their questions will be answered in a language they can understand.)
|I won't usually namecheck anybody on here unless I have their explicit permission. However, I hope the individual concerned forgives me (even though they hate publicity) because I honestly admire their bravery – apart from that what I am going to talk about is in the public domain anyway.|
On Saturday I had a couple of very interesting conversations (as well as a go in a “Cross-Country” wheelchair).
Don't worry – the conversations and the wheelchair were all connected (and not just because the two humans and the wheelchair were in the same place at the same time).
One of the conversations was with my very good friend John Coster. He and I were talking about health (mine) as well as sight problems – he thought that I might be able to help someone else who is blind.
The other conversation was with an amazing – yet publicity-shy – man who I love talking to when I see him. David Needham has got Motor Neuron Disease and is in a wheelchair. In fact – David was really the reason I was in the same place as him, John, and the “Cross-Country” Wheelchair.
Well – I call it a “Cross-Country” wheelchair but that is not what David is planning on using it for (it just looks like one with its BMX-type tyres and its levers) – that would be far too easy.
David is planning on using it to raise money for MND (a charity which focuses on Motor Neuron Disease) – by completing the Three Peaks Challenge. This sounds challenging enough when you can walk and climb but I can't imagine what it would be like in a wheelchair.
I know I can sound a bit like a broken record when it comes to the subject of how people with disabilities are perceived by the rest of the population but I honestly think that David's courage and determination go some way to prove that – just because you are disabled and you may not be able to do things in the same way as everybody else – with a little thought you can achieve the same things as them. It might take you a lot longer and you might have to find some ingenious ways around the challenges and obstacles presented by your disability but – trust me – it can be done.
I was reading a very interesting review of a play this morning and it got me thinking about who has the right to tell our story – us or the people who have only seen it from the outside?
I can't remember the title of the play or the name of the reviewer – what I can remember is the reviewer actually had experience of what the play was supposed to be about. The play didn't match the reviewer's experiences at all. In fact, the memorable line from the review was “the play appeared to be an English view of Northern Ireland”. The reviewer then went on to give his expert opinion of what actually went on during the time and situation in which the play was supposedly set (apparently the reviewer came from the place where the play was set and had personal experience of what actually happened).
The funny thing is – we see people attempting to tell stories they have no real experience of all the time. Or – and in some cases this is even worse – they try to tell a story which they only have partial experience of. I admit that there are some people who can actually succeed in doing that but there aren't very many.
When I say “attempting to tell stories they have no real experience of” I am obviously not talking about people who need to be professionally dispassionate when they relate the story – as in journalists. I am talking about people like writers, comedians, etc. Sometimes even people like you and me.
Let's just say – the minute I hear someone getting the old “paintbrush” out in a conversation I become very wary indeed. “Paintbrush”??? I hear you ask. Yes – a useful device for applying paint to surfaces, sometimes even surfaces where you have no intention of paint being applied. A bit like when someone speaks in such a way that every single human in a particular group share the exact same characteristics – based on the single member of that group which they have met in person or read about. You know the ones I mean - “All Muslims are terrorists” because a single human who claimed to be a Muslim carried out a terrorist attack, “All Disabled people are Benefit Scroungers” because one person who claimed to be Disabled got caught cheating on their Benefit claims, “All Asylum Seekers/Foreigners are here to cause trouble/steal our jobs, etc”, because one person got their nose put out of joint because an Asylum Seeker/Foreigner might be better qualified and therefore have got the job they wanted.
Try turning the story on its head and looking at it from the point of view of the person at the centre of the story. Whilst you are at it you might as well try to think how the particular group they belong to might feel on being told they are exactly like the last person you met or read about who is a member of that group.
I am a Disabled person. I am also the daughter of someone who would legally be classed as an immigrant. The highest qualification I have is a Level 1 NVQ in Business Administration. I have got GCSEs (“C” Grade and above) in four different languages. My first name isn't exactly common in England. I have been diagnosed with Metastatic Breast Cancer and Heart Failure.
I can tell you about my experience of all the above – using my own words. I can even make a joke out of some of those things – whilst being greatly offended if someone with no experience of them tried to do the same.
One of my friends said something which kind of relates to this. I had commented on their Facebook status after they had done one of those quizzes about who would be their “Life Partner”. This friend happens to be one half of a pair of identical twins (guess who was picked as their “Life Partner”???). I made a semi-serious comment along the lines of “of course this person would be your Life Partner – you were together before you were born”. Of course I cannot claim to know what it is like to have any brothers or sisters, let alone be one of a pair of twins. However, I can definitely claim to know what it is like to be friends with a pair of twins.
I can still remember when I first met my friend and their twin – mainly due to the fact that I nearly asked my Mum to book me in for a sight test when I got home from school that day. I was standing in the dinner queue during my first term at Lutterworth High School when this pair of identical-looking girls stood in front of me (one in front of each eye). I still haven't worked out exactly who said, “Got double vision, have you?” - and that is after 32 years. (I still get them confused even though they now have totally different hairstyles and hair colours.)
What I am trying to say is – if you want to tell someone else's story try to keep it accurate and keep them in the centre of it. Try not to fall into the trap of thinking that everybody has the same experience – because we don't. You and I can be in the same place, doing exactly the same thing, but I can guarantee that we will have differet experiences and memories of it. The same goes for myself and another person with a similar sight problem (Heaven help them). As U2 sang “We are one but we are not the same”.
Not everybody has the same story – so they shouldn't all be swept up in some mythological idea of what their life seems like to an outsider who has no experience of it. Nor should they be subjected to the quickest stereotypical label you can apply to them. After all – if I tried that trick I would probably alienate over half of my friends very easily.
Here's an idea – if you don't understand why I am doing something you may find odd – or if I am not doing something which you would expect me to be able to do – try asking me about it. As long as you don't open by muttering, “Can't you read?”, or, “Everybody else does... so why can't you?” -ao or look at me with pity or as though you think I should be locked up for my own safety – I will be willing to tell you my reasons. After all, how can we learn about things we don't know without being taught about them???
Stereotypes are barriers which really need to be broken down – and mythological ideas about different sections of society really should be replaced with true facts.
The best people to do that are the people who have the experience to back their words up. In fact – the best people to do that are you and me.
|youtu.be/rWVgbTBlH9M "Wanted (Dead Or Alive)" by Bon Jovi |
Please listen very carefully to the lyrics of this song before you read this blog post. They may have started out being about some kind of cowboy fantasy but - to me - they describe the effects of bullying so well.
I am always amazed at people's perceptions of the effects of bullying – especially if they have never been subjected to it. They seem to think that the effects only last as long as the bullying itself does (maybe fractionally longer). They also seem to think that the only person who has been affected by it is the person who is bullied.
Here are some other words which I consider to be very closely linked to bullying – Terrorism, Genocide, Murder, Manslaughter, Assault, Grievous Bodily Harm (GBH), Actual Bodily Harm (ABH), Mental Abuse, Torture.
I wonder how many of you would tell me that the above only affect the person who they happen to??? Or, how many of you would tell me that the effects don't last for a very long time???
Of course, you might well look at the list of words I consider to be very closely linked to bullying and think I am either exaggerating or I have totally lost the plot.
The answer to that is – neither. I am what some would call a victim and others would call a survivor of bullying and I wanted to tell you about my experience of the ways in which bullying has affected myself, my family, and my friends.
I am not going to tell you the exact details of the bullying I received (I don't want to be responsible for giving anybody else ideas on how to make someone's life miserable to the point of wanting to end it). I may give you the odd hint though during the course of this blog post as a means of explaining how it has affected myself and others around me.
Bullying can take many forms – Physical, Mental, Intentional, Implied, etc. If you are subjected to any form of it for any length of time you will hit the point where you believe every bad thing anybody says about you and you will believe you deserve all the bruises and pain you receive.
Here is a hypothetical question for you – what would you do if I walked up to you in the street and punched you for no apparent reason? Probably attempt to have me arrested for punching you. You would probably have a stronger case against me if I had picked on one aspect of your person I didn't like and used that against you – at least then you could probably sue me under the applicable Act (Racial Discrimination, Religious Discrimination, Disability Discrimination, etc).
I am going to start with the one “side effect” of being bullied which I have never been affected by – but I can honestly understand why people do become affected by it – Substance addiction (Drugs, Alcohol, etc). You could say that the side-effects bullying has had on me are rather more easily hidden and have little or no financial cost unless I choose to subject you to them.
If you meet me you may think I am a pretty tough cookie. The truth is more in the word “cookie” - they crumble easily if you bend them too far. Calling me “tough” is like calling a jelly stiff and unmoveable. Jelly is supposed to be wobbly – if it is stiff you have obviously made a mistake when reading the instructions on how to make it.
You may also think (second thoughts – chances are you will also think) I am the prickliest character you have ever met – and you would love it if I were to shut up and let you get a word in edgeways. Trust me – you do not want me to shut up on first meeting you. If I am talking to you you still have a chance to convince me that you are trustworthy. If I go silent you have a big problem (unless I have asked you a question and I am waiting for your answer) – my next course of action will be to leave your presence by the quickest means possible never to (willingly) return again. Me going silent on you after first meeting you means that I consider you to be a mortal threat to me.
Here is something else – the less friendly you appear at first the more likely I am to talk to you. Experience has taught me that the friendliest looking humans are the ones who are the most likely to cause me trouble, pain, and heartache. However, on the flip side to that – I am one of the people who is least likely to judge you on either appearances or your life story so far. What I mean by that is – you can look like the most dangerous human in existence and decide to tell me about your past drug addiction, or your Mental Health issues and – unless you do or say anything to damage me - I will not judge you for it. The minute you make me feel uncomfortable all bets are off.
Hmm – apparently those of us who have been subjected to bullying will be all too happy to inflict physical violence on other people whether or not they deserve it. Here is a confession for you – I have only ever wanted to inflict physical violence on one person (by which I mean cause them serious physical injury) – and that was because I felt they were putting me in a situation not unlike I had faced when I was being bullied – more to the point - I didn't think they were listening to me because I felt like they were trying to steamroller me into submission. Of list of many and varied reasons for me not attempting to inflict serious physical damage on this individual was actually their job (and – no – they weren't a Police Officer). In the end I merely got more stubborn and vicious in my arguing. (It is a massive surprise that they are still talking to me.)
I find it extremely difficult to trust people – even now. I may give the impression I am totally comfortable in your presence but be very careful. One wrong move and my prickles will come out.
On the other side of that – once I do trust you - you have found a friend who will do anything for you. I will support you, turn into a Sounding Board for you. Basically – I will do anything in my power to make your life that little bit better for you. I am also extremely protective of my friends (unless you do something to break my trust – in which case I strongly suggest you leave me alone otherwise the consequences could be very nasty for you).
I said I was protective of my friends, didn't I? Well, you can say whatever you want to about me – I have heard every negative comment you could make – but - the minute you start badmouthing my friends or family - watch out. And don't think you will be protected if you were my friend to start with because you won't.
This may surprise you but I am not very confident – I wish I could be the sort of person who isn't afraid of blowing their own trumpet or “bigging themselves up”. In fact, I am the exact opposite. Don't just praise me for something like writing what you think is a brilliant blog post – I won't believe you (unless you have ended up in my “handful of heroes” who I trust with my life). Prove it by doing something concrete that will show me you like it – you can offer to help me with something you learn I have a difficulty with as a result of reading my ramblings, you can tell me that you have treated someone differently, you can even take me to events so I can review them, etc. Even better – throw ideas at me for blog posts which you might like reading.
I prefer my own company. Don't get me wrong – I like being with my friends. However, there are times when I feel like I have to pretend to be exactly like everybody else. There is nothing more mentally tiring than acting “normal” especially when all you want to do is have a major “meltdown” - crawl into a corner and either hide or die (depending on how stressed you feel).
Depression? Yes – I have had it. Suicidal feelings? Same. Actually seriously considered attempting suicide??? At least three times in my life. In fact, little do they know it but one friend actually stopped me from acting on it last week. I am not going to tell you who they are or what they did but I really appreciate it.
So – you see – bullying doesn't just affect the person being bullied. Nor do the effects only last for fractionally longer than the actual bullying. After all, it has been nearly 30 years since I left compulsory education and nearly 10 years since I got made redundant from E & F Services Ltd (where I was also bullied by the man who ended up being my only boss) – and I still feel the effects of it every day.
Some days I consider myself to be a victim of bullying - other days I consider myself to be a survivor of bullying. The one thing I wish we could do is create a society where noone has to suffer bullying of any kind – no matter how old they are.
Tears For Fears released a single called “Shout” way back in the 1980's (I think). The chorus came into my head as I was thinking about writing this blogpost - “Shout! Shout! Let it all out. These are the things I could do without. Come on – I'm talking to you. Come on.”
Before you think that this is going to be yet another rant about Politics or the current state of the world – well, it is and it isn't.
We all have our own opinions about the current state of the world and the people who appear to think they are in charge of it. However, what would happen if we put the real Politicians in charge???
You might be looking at the above paragraph and thinking, “Ineke has finally lost the plot completely – the real Politicians are the ones who are in Councils up and down the land, as well as Westminster. What does she mean by 'put real Politicians in charge'?”
Let's just say that my opinion of the current Political Establishment can be summed up by re-arranging the following words into a well-known phrase or sentence - “Idiots” “Are” Self-serving” “Politicians”.
So – who do I consider to be the “real Politicians”???
Anybody and everybody who has acted in such a way that they have attempted to improve the lives of the people they come across – in whatever way they choose. Also, people who have used their personal experiences to educate people about a side of life they might not otherwise realise exists. Let's not forget those people who have stood up for what they believe in – be it by putting their job at risk through blowing the whistle on corrupt practices, or by joining a protest for a cause they believe in (be it setting up camps in a city centre to highlight the treatment of homeless people, or by helping in another way).
I have a list of people who I consider to be the “real Politicians” (the fact that two of them have actually been what is commonly known as Politicians – Councillors – is something I can forgive them for). With your permission I would like to name some of them (yes – some of the names have appeared elsewhere on my blog for other reasons but some names will be new to you).
James Patrick – ex-Metropolitan Police Officer – now attempts to educate people about all sorts of issues relating to the Politics of the world. Also an author.
James McLean – If you live in Leicester you will definitely have heard about this man. He is passionate about the Homeless (he has been Homeless himself). He has a habit of setting up camps in and around Leicester City Centre. He is also the brains behind the Homeless Party.
Derek Lee – a Clinical Psychologist who claims to be retired. Last heard of running the Brighton Marathon to raise money for the charity “Mind” to help fund facilities for Mental Health provision (see what I mean about him claiming to be retired??? I am not entirely convinced that Psychologists ever retire).
Roger Nield – retired Police Officer who now plays a role in a scheme down in Surrey for Military Veterans.
Wayne Naylor – ex-Leicester City Councillor who has a very big heart for the community with particular focus on those people who are on the outskirts of society.
Nathan Constable, Mike Pannett, Constable Chaos, Police Commander John Sutherland, Sgt Harry Tangye – all connected with the Police Service (one theoretically retired) – This little lot (plus a few dozen more I could mention) all use Social Media, blogs, and their own appearances on TV, to educate people about the real stories behind the headlines regarding Policing.
John Coster and Laura Horton – Well, what can I say about these two??? Both of them have a big heart for Disabled people (well they do both work for LCiL). John is also responsible for a concept called “Social Media Cafe” where groups of people can get together and learn from each other. Laura plays a big part behind the scenes in an event called “Choice UnLimited” - which is a kind of Marketplace type roadshow where Disabled people, Carers, etc, can speak to providers of goods and services face to face in a non-threatening environment.
The gang at The Real Junkfood Project (Leicester Battalion) – Not only does this group of people cook meals from food that is perfectly edible which shops throw away – they also are one of the friendliest bunches of people I have ever had the pleasure of being involved with. They volunteer their time willingly to – as the slogan on the tshirt I am currently wearing says - “Feed Bellies - Not Bins”. There are other Junkfood Projects all over the UK.
Julian Harrison – This man divides his time between his Mental Health work and his work for the Holocaust Memorial Trust. If you get a chance to hear him talk about either subject you will come away feeling educated without feeling like you have been lectured. He has personal experience of Mental Health issues and the discrimination faced by Jewish people.
You may think there is someone missing from that list – as in the human typing this blogpost???
There is one very good reason why my name is nowhere near that list – I do not consider myself to be remotely Political. Yes – I try to educate people about the challenges I (and others) face through my blog. Yes – I have been known to volunteer for both LCiL and The Real Junkfood Project. Yes – I do work with Roger Nield. Yes – I do support the various causes and organisations mentioned in this blogpost. And – yes – some of my blogposts do end up with a Political twist to them. But – to me – being Political is a whole different ballgame involving more noise than I am willing to make. I am the one who is usually found behind a computer keyboard – although I will speak up in person if the issues being discussed are ones I have personal experience of (for example – the “Purple Pound” Discussion Panel) - or if I think the topic is one I can usefully speak out about (just try to tell me that the Police are there to be abused, or they shouldn't eat or drink – let alone carry a firearm in public – and see what I have to say about that. I consider the Twittercops I follow to be friends of mine).
I want to finish with sharing things which two Wise Owls said to me (on separate occasions – some years apart). The Wise Owls will know who they are.
The first one said, “You will never know what it is like to be a 50 year old man”. (Well, I was a 30 year old female at the time.) That one taught me that we all have different experiences of life. However, the Wise Owl also taught me (later on) that we can use our differing experiences to help each other.
The second one said something which actually keeps me blogging even when I feel I have nothing important or Earth-shattering to say. “It is all very well signing an online petition but that only takes 5 seconds and then it is forgotten about. It takes hard work to make a real change in the world and your blogging is an important part of that.” The Wise Owl is still one of my biggest supporters when it comes to blogging.
I have a challenge for you – find something you are passionate about and start trying to make a small difference to that situation. It can be Mental Health, Homelessness, Lousy designs for objects you use regularly, etc. You can write letters to your local paper, start a blog about it, become an activist (or a “Highlighter” if you prefer), or just speak about it, or volunteer with an organisation which is dedicated to that particular cause. You could even run a Marathon.
There are times when I really wonder which planet our Government actually resides on. Put it this way – it is not my version of Planet Earth.
You might be thinking this is going to be a rant about the never-ending “Brexit” arguments. However, you would be completely wrong.
Just before I had to fight the extremely tempting desire to put a brick through my Dad's TV yesterday evening (I was cooking our usual midweek meal at the time) I found my intelligence being insulted by some Government Oik on the subject of “Self-employment”.
According to the aforementioned Oik people apparently opt for Self-employment soley for Tax reasons (as in they want to pay less Tax).
Well, I suppose the Oik has kind of got a point – even if he got it the wrong way around. Someone does want to pay less Tax as a result of recruiting Self-employed people. The trouble is – it is not the prospective “Self-employed” employees who want to skew the playing field – it is the companies who are doing the employing.
Leave the headline grabbing companies (Uber, Deliveroo, etc) out of it for a minute. I know of companies who have advertised full-time Administration jobs with the information that the candidate will be “Self-employed”. This means the company employing the candidate doesn't have to give them the same rights as workers who are directly employed by the company. It also means the company doesn't have to worry about a high Tax bill as a result of dodging the PAYE and NI (National Insurance) contributions they would otherwise have to pay as a result of properly employing the candidate.
There are quite a few reasons for people deciding to go down the “Self-employed” route – none of which include lowering a Tax bill.
You might want to go Self-employed because you want to have more freedom regarding where and when you work – if you have children for example.
Your skillset may not be used to its full potential by a “Mainstream” employer. This could be as a result of the limitations placed upon you as a result of Company Rules, etc.
Your Mental and/or Physical Health could be put at risk if you stay within “Mainstream” employment. This is particularly true if you have any kind of pre-existing Health problem or Disability. It is also particularly true if you become a victim of a bullying culture at work. (Trust me – a combination of those two would finish anybody off. It nearly finished me off.)
We all know the damage lack of sleep, etc, can do to our general wellbeing.
The irony is that (in my case in particular) sometimes the idea of going Self-employed can actually be kicked off by the idea of you being in charge of when you get paid. As someone who went through periods of not being paid for at least two months at a time in my last “Mainstream” job – I could cope better with the idea of not having to deal with an employer acting as a Middleman and pushing me towards the bottom of the “foodchain” as far as being paid is concerned. (Yes – I am aware that when starting out as Self-employed you don't have the luxury of a regular income anyway. However, at least you get a chance to work towards it.)
Another reason for someone becoming Self-employed might be because there is no way on Planet Earth that they can get a job any other way. They may have a Criminal Record, etc.
If you ask me – a fairer way to deal with the problems in our Economy would be to pay everybody a Basic Income and scrap the idea of Tax and National Insurance completely.
Instead of paying Taxes and not having a say in how they are used – we could simply pay out the full price for every single Public Service we use directly from any money we actually earn. The only mandatory thing we would all have to pay into would be Social Security (which would be deducted at source). If you decided to have children you would be responsible for paying the full costs of their education. You would have to pay the full price upfront every time you used the Emergency Services or the NHS.
I wonder exactly how many Government policies would get off the ground if the general public could decide for themselves whether or not to pay for them. I get a strange feeling that being forced to pay directly for things like Trident might change a few people's minds about them.
We keep being told that the lack of money in things like Education, the Health Service, the Emergency services, etc, is driving down standards. We also keep being told there is not enough money to fund these things properly – either at a Local Authority level or a National level. As for asking the very highly paid people like Footballers, Members of Parliament, etc, to surrender any earnings above two times the national average wage in order to pay for the proper funding of the above??? Forget it. Not every rich person is nearly as generous as George Michael was.
If we cannot fix the Employment situation so that everybody can afford to pay their fair share of Tax and National Insurance contributions – as well as giving people to vote with their hard-earned spending power about what exactly the money collected will be best spent on – we will either need to scrap Tax completely and pay for everything ourselves or we will need to turn the extremely (to the point of obscenely) wealthy on their heads and shake them until their money falls out of their pockets. We could also make them surrender all property they own apart from the home they actually live in. This would solve the Homelessness crisis at a stroke.
So – next time you think that the Self-employed are the best targets for Tax and National Insurance hikes – remember – they are the ones who are putting their lives into the Economy. The ones we should be targetting are the Millionaires, upwards.
|One day last week I shocked myself when I realised that I have five people (OK - let's face it - men) with PhD's in my list of friends and acquaintences. The list could be longer but those are the ones who immediately sprang to mind. If you are interested the subjects - in order of how long I have known the people - are as follow; Advanced Maths (I have always hated Maths so - to me anything above a GCSE is "Advanced" but I think this person specialised in Velocity), Psychology, Quantum Computing, some strange branch of Science, and Photography.|
Me??? Four GCSEs - C Grade and above - and one NVQ (National Vocational Qualification) Level 1 in Business Administration, and various other Certificates in random subjects. Not forgetting the sheer hatred of the idea of going anywhere near a classroom ever again.
The funny thing is that - according to nearly every single school report I have dug up and read so far - I should not be writing this blog. Apparently I was useless at writing at Secondary School (the disorganisation still applies though in some instances).
I wonder what my school reports would have said if all my achievements were taken into consideration though???
There were days when - honestly - turning up to school was almost more than I could manage to do. What felt like 24/7/365 bullying from the other students wasn't exactly conducive to me being "ready to learn" anything except that I should crawl into a corner and kill myself quietly.
Oh - and I have a message for those teachers who thought I worked too slowly for their liking. Trust me - I was working as fast as I possibly could given my circumstances. Nearly all of you made it obvious - by your attitude towards me and how you dealt with me - that any attempt at asking you to alter your lessons, classrooms, etc, to suit my needs would just lead to arguments and further difficulties. As it was I was just seen as a lazy nuisance when I actually ended up having to teach myself how to cope with your lessons (and in some cases both the equipment you used and your method of teaching) - on top of navigating myself around your school grounds.
(Let's just say that one teacher informing me - years after I had escaped the Education System - that the staff at one school kept having meetings on what to do about me - without inviting the one person who could have helped them - was not exactly conducive to me feeling any less angry about my school days.)
I could bore you to sleep with the list of things that I ended up teaching myself just to get through the Education System. Some of the things are no longer useful but other things are what help me to hide the exact extent of my difficulties in most instances nowadays.
As you might have guessed by now - I work best on a "Trail and Error" basis. I also prefer to be able to ask seemingly stupid questions in order to help myself learn. To put it bluntly - I hate being told to do something in a certain way because "that is how it has always been done" or because "everybody else does it like that". Tough - I am not everybody else and I have a way of working which suits me better than yours.
I remember when I was about to sit my RE (Religious Education - sometimes called Religious Studies) exam. Due to the school's belated realisation that I may have had some minor difficulties coping at school - I was allowed special priviledges during the exam. Unfortunately, these apparently did not include my RE teacher deciding that he knew my sight better than I did.
The hall where we did the exam was lit by what appeared to me to be spotlights in the ceiling. These were spaced out in such a way as to give me problems with the contrast between light and dark (as well as potential difficulties seeing what I was doing if I had not sat under a light).
The RE teacher saw that I had parked myself under one of these lights and immediately attempted to get me to move away from it. Their exact words were "why are you sitting under a light? Wouldn't you be better off somewhere else?"
Luckily the imminent start of the exam prevented me from telling the aforementioned teacher why I had decided to sit where I did - otherwise I would probably have been ejected from the exam.
It has taken me a very long time to feel comfortable enough in my own skin (and life) enough to be able to stand up for myself and argue with people who I was led to believe were better than me just as a result of their paper qualifications - without going into Defensive Mode.
In fact - my two biggest highlights so far have both involved members of my personal "Mastermind Brainiac Club" (as in two of the five humans mentioned at the start of this blog post).
There is something bittersweet about using the skills your teachers unwittingly taught you (and which appear on no version of the school curriculum I have ever seen) to make something you want to happen actually happen. Unfortunately - the fact that it was someone who is now a good friend of mine who got caught in the crossfire between the "me" of my schooldays and the "me" of when I met them - is something I will regret for as long as I live. I am not going to divulge the specifics on here (they are not relevant) but what I will say is that it has never been a good idea to make me feel like I am a Lab Rat who just exists to be experimented on for your pleasure. That is the best way for me not only to get very angry but to want to get something out of the situation too - by any means necessary. (You could say that the non-appearance of the one piece of equipment- which I was promised by a certain teacher at school which would have greatly helped me with my work was the start of that downward spiral.)
The other highlight is much more pleasant and uplifting (for me anyway). As you may already know I am involved in a Photography project with someone - based on the challenges I face as a result of my sight. Somehow - through this project - I appear to be educating someone with a PhD in Photography about sight. Now - if you had told me three years ago that I would be able to do that you would have been politely requested to make an appointment to get your Mental Health assessed. My discussions with the photographer I am working with suggest that they are indeed looking at the world in a different way as a result of our project.
If I were in charge of the Education System I would scrap it and start again from scratch. No targets as far as Exam results and paper qualifications go for a start. I would also design the lessons to meet the needs of all the students individually. (For example - if the lesson involved working out the volume of a cube - I would find a way of making the cubes accessible for every student to use. Even if it came to painting lines in the grooves to separate the squares. And - yes - that does come from personal experience of one particular Maths lesson.)
I would also ensure that every school conformed to a "Sight-friendly" layout - including stairs and lighting. I would even subject the teachers to a school uniform of sorts. My favourite teacher had one item of clothing which I absolutely loved because it was literally easy on my eyes. This teacher could wear a crisp, bright white shirt if they wanted to as long as they wore their navy blue tank-top over the top of it. Trust me - it made a change from being blinded by non-stop oceans of white shirts (especially in bright sunshine).
I would not make it obligatory for the students to all work in the same place or at the same speed, or even in the same way. We all have different ways of learning - I prefer reading, writing, and interrogating the nearest "Human Library Book" I can find on the subject. I also prefer working away from other people (unless it is something like Creative Writing) so I can concentrate and take breaks when I need to. (Let's just say that - far from being a punishment - the amount of time I spent in Solitary on my own in the my first year of Secondary School was my idea of Heaven.)
To finish this off (yes - I am aware that it is more of a ramble than usual) I just want to say two things.
On paper I may not be the most highly qualified human you have ever met (or read the ramblings of) but I would say that I am reasonably intelligent. My life experience could probably get me at least one PhD (if they gave out paper qualifications for coping with a Sight Problem and Sideways thinking that is). This blog is proof that I must be reasonably on the ball as far as "living in the world" is concerned - otherwise I wouldn't be able to write about most of the subjects this blog has covered. I may not have experienced some of the subjects I have written about directly but the people who have shared their thoughts with me must think I have enough of a way with words to be able to tell you about them (when they allowed me to share them with you of course).
The final thing I want to say on this subject is this - I found something intriguing on a Psychology website recently which made me think. It said something along the lines of "instead of engaging with Therapy in order to cope with life engage with life itself". Maybe that is what is currently being lost in the continuous upheavals of the Education System - instead of being taught subjects that people in power think we need to know in order to cope with life - we should be using the experiences we have in life to teach us about education.
|I have to admit that my favourite type of people are the ones who walk into any space like they own it - and leave you wondering exactly what will happen next. You know the sort? They appear to have the ability to make life seem "fun" in both senses of the word - depending on what mood they are in.|
Most of the friends who I have met in real life have been on the "spicier" side of the spectrum (the ones who almost seem to dare me to stay around and find out what life in their orbit is like).
I suppose it might be because I wish I could be as confident as they appear to be on first meeting them.
Someone who I would now consider to be a good friend of mine is one such character - I just love waiting to learn about his latest ideas on how to change the world (including people's perceptions of it as well as some of the humans who live in it). Trust me - he has managed to make me think differently about myself and my abilities - both as a Blogger and as someone with the ability to educate others.
I first met John Coster as a kind of roundabout result of attempting to get involved in the "Everybody's Reading" Festival in Leicester a few years ago. His name had been given to me by one of the people who ran that as someone who could possibly help my with publicising this blog.
I don't mind admitting that - the first few times I met him at some of the "Citizen's Eye" gatherings he ran - I was absolutely petrified of him. Here was a man who was most definitely on a Mission to help the "unseen" Journalists (call them "Citizen Journalists") get a voice.
When he decided to stop with "Citizen's Eye" he started something called a "Social Media Cafe" at LCiL (Leicester Centre for Independent Living") in the West End of Leicester.
I have blogged about both LCiL and the "Social Media Cafe" before now. However, I wanted to go a bit deeper into the effect it (and John) has had on me.
In fact, if I start with the most recent "compliment" someone paid me (yesterday evening) you might get a taste of it.
I had been interviewed as part of the LCiL 24 hour Newsroom (celebrating the "United Nations International Day of Persons With Disabilites") when I got talking to a student who is studying "Creative Media". I decided to share with the poor student about some of the challenges I face as a result of my sight (well, he had sat in on the interview). I was very surprised to learn near the end of our conversation that he thought I must be a teacher. All I am thankful for is the fact he was willing to listen and learn.
If you want to see the video of me being interviewed please go to the #lcil24 newsroom website by clicking here - lcil24.wordpress.com/ and following the links.
The Social Media Cafe was an eyeopener for me. Let's face it - I am so used to having to fight my own battles and be very careful what I say about the challenges I face (as well as when I try to educate myself about the challenges faced by people with other disabilities) that - the idea of having a space where I could share my thoughts - without being judged as a result was a scary alien concept for me.
Eventually I decided to give this thing a go - I could always go back to being on my own if I felt judged.
The "Social Media Cafe" turned out to be a safe space where I can moan about the challenges I face as well as learning about challenges faced by people with other disabilities. The best bit is that I can ask the questions I want to in my own way without fear of being attacked or offending the other person. We might well all have different experiences of being what Society classed as "Disabled" but I can use my experiences with my sight to learn about (for example) Mental Health issues, Deafness, being a Wheelchair User, etc, in a way that I wouldn't dare to outside the "Cafe".
As well as setting up the "Social Media Cafe" - and letting me write some articles for "Voice" magazine - John Coster has actually given me something which I have been very short of in the past - Confidence in being able to feel I know what I am talking about.
On meeting me you may think I am the biggest Loudmouth you have ever had the misfortune to meet. The exact opposite is nearer the truth. I am happiest on the edges of gatherings unless I know the people involved. I think I have mentioned in a previous blog post that - to get to know the real me - you are better off reading this blog than talking to me in person (at least until I trust you with my life).
This is going to sound completely crazy I know - but had I not met John I very much doubt I would have had the energy or confidence to start my photographic project or even dream of sharing my ideas for the "Human Library Zone" project with anyone.
Being told you are good at something you love doing is one thing. Being told that you are good at doing things which frighten the life out of you is another thing entirely. Speaking to a range of humans from different levels about things which interest or affect me in some way is most definitely not something I am comfortable doing. I am not joking when I tell you that the best way to scare me is sit or stand me in front of a "Brainiac" (preferably someone with a PhD) and ask me to either educate them about my sight or make a suggestion about something which will make my life easier.
I did, however, have some success when I didn't realise the lady I asked about the chances of having a talk at next year's "Literary Leiccester" Festival about 'Disability and Writing' (on the back of a talk I had attended about 'Racism and Writing') was not only someone with a PhD but was also in charge of the event. I get the iea that we will have one such talk next year.
I have heard John Coster tell other humans that I am good at blogging and writing. He has told me often enough as well. I really appreciate his friendship and support - as well as looking forward to whatever idea he has got cooking in his brain to give different sections of Society the ability to mix without fear of stigma.
|Last Thursday evening I went to what must be the most surreal event I have ever attended.|
I had met up with someone about my "Human Library Zone" project and they invited me to attend a protest and a Council meeting (they were linked - the former was due to be discussed at the latter).
After we had trudged up three flights of stairs we found ourselves in a small "Public Gallery". When I say "small" I mean there was hardly any room in it.
I suppose I had been a bit naive because I expected the meeting to be run like most other meetings I have ever attended. How wrong could I have been???
Almost as I had sat down on the bench in the "Public Gallery" we were threatened with the Council having it cleared due to some other Members of the Public shouting (what I thought were) reasonable comments. That was were the "Pantomime" bit of the title to this blogpost comes in.
I spotted what I thought was a piece of paper next to me on the bench. When I picked it up I read it and was horrified to find myself reading what looked for all the world like a script for the meeting. Including how the petitions were to be presented by various people. With blanks for comments by assorted Council Members. I must admit the "script" was really enlightening. Although what transpired during the "debates" was far from entertaining.
If you have never seen the British TV series "OutNumbered" - here now follows a brief summary of how it worked.
The main characters were played by two adults (who had scripted lines) and three children (who could make it up as they went along - leaving the adults frantically trying to connect what the children said and did to the script in front of them so the programme made sense to the audience).
That - Ladies and Gentlemen - was what passed as the "Democratically Representative" Council Meeting I attended. Actually - it was more like "Lies, Damned Lies, and Statistics".
What made it worse was the fake "debates" the Councillors had on the very important topics under discussion. It was obvious that the answers had been decided behind closed doors prior to the meeting.
Let's just say that I was very glad that the children who had been brought in to plead the case for one of the petitions (linked to the protest held before the meeting) had left the building before the debate on that particular subject had started - otherwise they would have been really disappointed with the way it was discussed.
I had been under the impression that I was "Democratically Represented" by my local Councillors - that idea has been totally destroyed.
If we cannot rely on even our local Councillors to represent us - instead of looking after their own vested interests (as well as their "jobs" in the Council) - how can we be expected to rely on our national Politicians???
There are three lines from a Pantomime which I wish all Politicians would remember (usually more connected with the Baddie in Pantomimes but also applicable to the people who vote for them).
"He's behind you".
"Oh no he isn't"
"Oh yes he is" (to be paraphrased into "Oh yes - the Electorate are").
I just wish I could be sure that there was a way of restoring my faith in "Democratically Elected" government at all levels - without being so brutal as to break the system completely and start again from scratch.
|Last night I watched a very interesting TV programme with a very good argument at its core.|
The programme asked the question "Will we ever have a Black Prime Minister?"
I thought it was a very informative programme for a slightly different reason to the one the Production company might have expected.
With the current uproar about the election of Donald Trump (and how the Polls got it completely wrong) - as well as the UK Mainstream Media trying to claim it is the second stage in a "Political Domino Effect" (with the Elections in France and The Netherlands being the next "ones to watch" for signs of a Populist uprising) - I remain amazed that nobody has asked the most obvious question.
"Does Democracy - in the form we are currently presented with - work in reality?"
Forget the "Electoral College" idea that the US Presidential Elections are subjected to (my brain just exploded when I attempted to work that out) - Does "Democracy" give everybody an equal say in what goes on in our "Political Scene"???
All UK Nationals who are over the age of 18 have a right to vote in our General Elections. If you choose to move to the UK but not go for UK Citizenship or Nationality you can live here for the rest of your natural life and still have no say - even if you pay UK Taxes. (Given a choice between keeping her Dutch Passport and getting British Citizenship - my Mum opted for the former. That was in the 1970's. Her mantra was "I was born Dutch, I am Dutch, I will die Dutch". The fact she ended up living in England for longer than she lived in The Netherlands was beside the point.)
However, the programme concentrated on something which I have experienced my entire life - the challenges faced by people who are not seen as "Mainstream". Even though I am White there are barriers which my sight raises regarding how differently others can see me.
The programme discussed the differences in how Black people are percieved throughout their lifetime compared to both their White peers and White people who have the benefit of a Private Education, access to the top Universities, etc. Let's just say that someone from Theresa May's background has a 90 times higher chance of being the Prime Minister of the UK than a Black child from somewhere like inner city Birmingham.
We all know that people in the top jobs in the UK are all cut out from the same mould - White, able-bodied, people.
Surely, in an ideal world, your background shouldn't bar you from your ideal career choice, nor should any disabilities you may have???
Have you noticed that there are actually more Black and Minority Ethnic MPs in the House of Commons than there are obviously Disabled ones? In fact, the last obviously Disabled MP who reached the ranks of Government Minister was David Blunkett a few years ago.
I am supposed to elect an MP from a choice of candidates who have no idea of the challenges I face in my life. I have never actually seen my current MP in the flesh.
I really feel we should all be able to represent ourselves in Government. After all, "Democracy" comes from the Greek "Demos" - of the people.
Just over a week ago we commemorated Guy Fawkes - who was caught after the failed attempt to blow up the Houses of Parliament. Now - I am not for one minute suggesting we should have a re-run of that event. What I am suggesting is - we find a system of Government where everybody can represent themselves and their own lives.
I remember an advertisement aimed at encouraging people in the UK to go out and vote - it suggested that if we didn't vote we would let the Extremists in.
There was one thing about the US Presidential Elections that I wish we could see over here. In some States they had another box on the Ballot paper marked "None of the Above". I - for one - would be more happy about exercising my Right to Vote if that appeared on UK Ballot papers for all Elections.
First Past The Post (the current UK Electoral System for General Elections) is definitely not representative. Proportional Representation is only slightly better as we are still forced to choose between candidates.
Having "None of the Above" would be a clearer indication of the feeling in the Nation.
However, my ideal scenario would be to create Total Democracy and allow everybody to represent themselves and their own choices - with a small (unpaid) Panel to decide the major issues of the day.
Not only would this free up a lot of funding (no reason to pay Parlimentarians vast sums of money) - it would also create more of an even playing field as far as the ability to achieve Equality for Everyone is concerned.
How can people who have no experience of life in the "Real World" be expected to make Laws which benefit everybody??? How can the "Career Politicians" have any idea of how the world has moved on since they became an MP???
We need to claim "Politics" back for the people it is supposed to serve. Otherwise there will be more generations of people who feel left behind through no fault of their own as they watch the companies they work for close without any credible alternatives being put in place, or who find the system for applying for Social Security too difficult to bother attempting and live in poverty as a result, or who find themselves in jobs which are totally unsuitable (unstable pay, crazy contracts, bosses who waste no opportunity to make them feel too poorly to work, or employment which is unsuited to their health) with no obvious means of escape.
We need to somehow become a country where the people who are on the margins of Society are the ones who have the real power to change things for the better. They (or rather - we) are the ones who could make a positive difference for everybody if only we were given the chance.
|As I was thinking about typng this blog post I had three songs playing in my brain. They were all by Richie Sambora and they covered roughly the same theme in varying ways. I will insert them at different points in this blog post.|
However, then one of my friends from Facebook reminded me of the song which is actually the most appropriate for this blog post. (I honestly never thought I would type any lyrics to the theme song of a soap in my blog posts - oh well - there is a first time for everything I suppose!)
www.youtube.com/watch The first song on the playlist for this blog post is not actually the first song which came into my head as I was thinking of typing this blog post. "Fallen From Graceland" was actually the second song which came into my head. The first lyrics of "There's a line that you cross when you find out that you've lost. When your world is closing in and it crawls under your skin" are almost exactly what came into my brain when I read the heartbreaking account of what has been happening to James Patrick recently.
You may remember James as being the whistleblower about the Police's manipulation of Crime figures in the UK. He lost his job as a result (I think he resigned before they got the chance to sack him for Gross Misconduct).
Now he is in an awful situation where he is literally destitute.
James is an "Inspirational Person" to me because he has always stood up for what he believes in, he won't take "No" for an answer, and he is a stubborn fighter. He is also using his Twitter account to educate people about the circumstances he finds himself in - as well as - more importantly - how people can help others in a similar situation.
I told James that I was not going to nick his blog post - but I was honestly so impressed by his dignity and courage in speaking out that I wanted to do something to help him in my own way.
If you have read Inkyworld you will know that I am passionate about vulnerable and Disabled people - as well as fighting the injustices we face.
The problem seems to be that too many people are too willing to either look the other way or throw out uncalled for abuse at the victims without bothering to learn the full story first.
This can be applied to Poverty, Unemployment, Disability, Homelessness, etc.
Have we really become a world where there are two answers to every problem society faces - either signing an online petition (which takes you approximately 6 seconds to do and 1 second to forget about it) or the adverts where you are informed that "£5 a month will irradicate the current crisis in a part of the globe you had never heard of before it made the news???
Of course - the other option is to ignore the situation completely and continue with your life.
www.youtube.com/watch This song is "Harlem Rain" by Richie Sambora. This comes into my mind every time I hear or read about people who have fallen on hard times for whatever reason. "Another shattered soul in the Lost and Found. One more night on the streets of pain - getting washed away by the Harlem Rain".
There is another way to make the situation easier for those of us who find ourselves as "Outcasts in Society". Obviously - the best way to make the situation easier for us is to create a society which doesn't actually have "Outcasts" in it.
The best way to help us is to educate yourself about our own situations. We all have a different story - mine is very different from James' - but our stories all have the same theme running through them. The theme being "if you don't fit in you will be ignored".
The scond best thing is to actually go out of your way to help people who are on the outskirts of society. I don't just mean by signing a flipping petition, or putting money in a charity tin (or even giving you bank details to some chugger) - I mean by doing something practical and using your talents and time. Throwing a tin in a box marked "Food for the Poor" is something you can do if you want to remain at arms length from the situation and walk around in a state of emotional blindness. Actually giving your time to helping at a place where the vulnerable are found - and spending time talking to them and learning about their lives - is a lot more useful both for you and for them.
As a Society we seem to have become more self-serving as the years have progressed. I very much doubt you would get an event like "Live Aid" with as big an attendance as there was in 1986. Charity singles these days have to either be almost vomit-inducing in their saccharine-sweetness or by a very famous group or artist in order to get anywhere. (The best charity single I have ever come across was neither vomit-inducing nor by a very famous artist - however, the lyrics were the most heartfelt I have ever heard. The song was the "If" song by Kristyna Myles in support of a Christian charity called "Tearfund". www.youtube.com/watch.)
The final song of the trio by Richie Sambora actually was the first song which came into my mind as I was thinking about this blog post. "Hard Times Come Easy" is actually one of my favourite songs by him (in fact I think it has made an appearance in a previous blog post). To save me quoting the entire song at you just watch the video www.youtube.com/watch.
At the risk of sounding like a broken record - it takes all of us to make a difference in our world. As in - it takes our time and our resources, as well as our reserves of patience and strength (both mental and physical).
You know the charities I am proud to support - you also know some of the challenges I face on a daily basis.
This may sound crazy but this blog appears to have turned into my way of using my talents to educate people about the issues I care about - as well as telling you a bit about the work I and other people do to help in other ways.
I started this blog post by telling you I had three songs by Richie Sambora in my mind as I was thinking about this blog post - as well as the theme song to a soap. What I didn't say was the soap is not "Neighbours" or "Home and Away" (the only English-speaking soaps to have lyrics to their theme tunes). The soap is one I have very rarely seen snippets of when I was flicking through the TV channels in Holland. "Goede Tijden Slechte Tijden" (Or "Good Times Bad Times" in English) could be considered to be the Dutch version of "EastEnders" or "Neighbours".
The theme song is the most uplifting song I have heard as a theme tune.
Unfortunately I cannot translate all the lyrics properly. However, I can give you the gist of them.
The time for uncaredforness has passed.
The long road to tomorrow starts today.
Dreams come free like a butterfly.
No longer hidden in security.
Good Times Bad Times
A day that appears as night.
Good Times Bad Times.
Love leads you to the end.
Good Times Bad Times.
No - it doesn't save your life.
Good Times Bad Times.
Sometimes happiness and sometimes disappointment.
The ideal is gradually approaching.
But it explodes when you want to catch it.
Create new opportunities to make you happy again.
Never will there ever be an end to that desire.
Adversity brings shade to happiness.
But you know the best is still to come.
Your courage and your confidence will not fail.
Life can really ressemble your dreams.
(If you really want to hear the original theme song sung in Dutch try this www.youtube.com/watch.)
|Earlier this week I had a rather interesting conversation with someone. One of the topics was how the other person switched between their day job and the reason for us sharing airspace at that moment. The fact that the two things - as far as I could see - were not all that different was apparently beside the point.|
You see - they both involved a mix of theoretical knowledge and two kinds of practical experience.
Allow me to attempt to explain what I mean by that.
The theoretical knowledge part is easy to explain. It is what we learn every time we attempt to do something new. This can either be the stuff you learned in an official "Educational Establishment" or from reading the manual on your latest and newest gadget.
The two different sorts of Practical Experience are a bit more complicated.
The first sort is where you begin to put into practice what you have learned in your "theoretical knowledge" sessions. It could be a case of finding a native speaker of Chinese and attempting to speak to them in their own language when you have just done a GCSE course in it). Or driving on a motorway. Or using your new gadget for the first time.
The other sort of Practical Experience is the one I am most interested in.
This is the one where you either don't have the theoretical knowledge to start with - or you find yourself having to bend the theory to the conditions and circumstances you currently find yourself in. Then finding out that the theory and your current circumstances do not match - and probably never will.
A good example of this would be when my Dad drives in The Netherlands. He passed his driving test in England - his automatic reactions tell him to drive on the left, oh and his brain is hardwired for English road rules.
My Dad has considerable experience of driving in The Netherlands. However, it still takes him some time to adjust and "flick the switch" as it were when he puts his front wheels on Dutch tarmac. Let's just say that driving on the left in The Netherlands is not exactly the smartest idea in the world. Although - one of my favourite memories of him driving in The Netherlands was when one Dutch driver had taken one look at the English numberplate of our car at one point and decided that Dad would be the typical English courteous driver (and let the Dutch car off the small ferry we were on first). I can still picture the look on the Dutch driver's face as we zoomed past them.
What happens when you find yourself in a situation where you do not have the benefit of theoretical knowledge before you gain practical experience???
This can be the most dangerous situation of all. The gap where the theory should be is either a total vacuum waiting to be filled with inaccurate "knowledge" or it becomes filled with what you find yourself having to learn through practical experience alone. This means that the "recieved wisdom" theory doesn't get any room.
This also means that it can become extremely difficult to translate your practical experience into theoretical knowledge that other people would be able to understand.
For example - hand me a camera, hand an amateur photographer a camera, and hand a qualified professional photographer a camera. Then stand all three of us in the same place at the same time and tell us to photograph the same view. The chances are you will not only get three different photographs but you will also get three different explanations of how and why we took them.
The two photographers who have some theoretical knowledge will probably be able to bore you about the composition they used, the lighting, the choice of film or digital, the shutter speed they used, etc.
Me??? Well - my monologue on the photograph I took will not include any of the above. My monologue will probably include why I took it in the first place. I have three main reasons - I liked the view I saw with my own eyes and I wanted to capture it and show other humans, I had a problem with seeing the view with my own eyes and I wished to make it easier to see, or I saw something the other two wouldn't understand and I wished to show them.
In plain English - I sometimes use my camera as an extention of my eyeballs. If I have difficulty reading things (and I am in a place where I am allowed to operate a camera) the zoom function suddenly has a very practical function indeed. (The other two photographers would probably tell you that the zoom function on a camera is the spawn of Satan.)
There is also another danger concerning the battle between practical and theoretical. It is called the Mainstream Media.
These beings all have some kind of agenda to push regarding life and how we should all live it.
We have all read and seen reports about such things as Disability equalling "Benefit Scrounging", Immigration equalling "stealing jobs from the native unemployed" (or even Immigration equalling "Everybody who comes into our country is a Terrorist", or worse "Everybody who comes into our country wants to live by their own rules and not mix"), and an Armed Police Officer going into a supermarket to buy their lunch equalling "Imminent Armageddon via indiscriminate firing leading to genocidal-scale mass murder".
Those of us with practical experience which proves how wrong all three of the above statements are find ourselves being drowned out. For example, I have only claimed what I was entitled to (and I did that reluctantly), if you have ever had the pleasure of meeting my Mum you will know she fully submersed herself in English life and played by the same rules as everybody else, oh and I have been up close and personal with an Armed Police Officer on my own and survived the experience without injury. I also follow a few Armed Police Officers on Twitter. They are almost friendlier than the non-armed Officers in some cases.
I could ramble on about how my practical experiences of the world around me do not match up to the theoretical knowledge presented by the "Mainstream Media" until I am blue in the face. I could also round up a few of my friendly "Human Library Books" and get them to tell you their side of the story. However, until there is a major culture shift - resulting in a Society where everybody's practical experiences of the world as we know it are treated as being equally valid to the received wisdom theory of how the world works - I honestly cannot see a way forward to a more just society.
Yes - that is the internationally recognised "No Entry" Sign
The "Disability Discrimination Act" should be a wonderful piece of legislation which enables those of us who either classify ourselves or are classified by others as being "Disabled" to have exactly the same opportunities as the "Able-bodied" members of society.
However, it doesn't quite work like that in my experience (or the experience of other people with various disabilities).
In fact - you could say that in some cases the "Disability Discrimination Act" shares more characteristics with the "No Entry Sign" in the picture at the start of this blog post.
I have blogged before about the fact that the purchase of glasses (as in "spectacles") is not covered by the "Disability Discrimination Act".
However, there are a few other things which I wish were also covered by the Act. Apparently I am covered by the Act when it comes to getting into a shop, cafe, or other building. (Handrails, ramps, etc, should be provided to enable me to get into the building.) The actual layout, lighting, etc, inside the building doesn't seem to be covered though. I have lost count of the amount of times I have walked into a building of any description and found myself unable to access the reason I entered the establishment.
You may call me slightly crazy if you want to (to be honest I am past caring) but - if I manage to enter an establishment on my own - I do not expect to have to leave and return with other people in order to achieve the objective of my visit. It is all very well training your staff in helping people to access your goods and services - but if I find myself needing to ask your staff for help in reading a menu, etc, your system has failed before our intended transaction has even begun.
Put simply - the only time when I will happily ask for help is if I find myself in a situation where I am faced with reading a language I cannot speak or understand a word of. For the rest I would prefer to be given exactly the same chance as everybody else.
Of course - the way I access the goods and services provided by your establishment may not be the same as everybody else. For example - I much prefer being able to hold things like menus, notices, etc, in my hand - instead of either having to locate a stepladder and a microscope or having to stand nose to wall with a notice which has been "helpfully" attached to a wall - because the idiot who designed the aforementioned notice appears to have forgotten that there are humans who cannot actually see extremely small print.
Another object which frustrates me no end is your friendly local ATM (or cash mashine) - and the associated "Chip and Pin" machines.
I will start with the ATM. Leaving aside the fact that the ones outside buildings are usually not shaded from the sun (in fact most of them appear to be in direct sunlight most of the time) for a minute. The major problem I have got with most of them is the size of the flipping contraption - more precisely - the size of the screen and the font. If the screen was bigger you could have spaces between the buttons around the sides of the screens. As for the font-size - I usually end up wanting to laugh whenever I use the "Fasttrack Banking" (or whatever those machines are called where you can get printed statements, etc) at HSBC banks. They let you have a choice of font-size for the screen. You can either have "Small" (for my eyes please read "Microscopic") or "Normal" (for my eyes read "Small"). I heard a rumour that they were considering having a "Large" font-size as well (for my eyes read "Normal") but I have yet to see it.
The "Chip and Pin" devices are the worst offenders though. I never know what sort I am going to be faced with when I want to pay by Debit Card - will I need to squint at the screen because the font is very small on a dark green background? Or will I need to find a welding visor to protect my eyes from the brightly backlit screen (even though the font is actually a readable size for once)???
My biggest bugbear which isn't covered by the "Disability Discrimination Act" is one which I have been known to face alost before I leave my home. In fact- they are two bugbears of mine.
I have blogged before about those things I classify as "Mobile Discos" (cars with music blaring from windows which are apparently sealed shut - and I can hear the music before I can see the car approaching). According to me - the only vehicles which should drive around making that level of noise so loud it drowns out the noise of the engine are as follows - Police, Ambulance, Fire Engines, and that is only when they are on "Emergency" calls. There is something about hearing a siren combined with seeing blue flashing lights which gives the general impression the driver is in something of a hurry. This ensures I keep my distance. On the other hand - hearing the latest chart-topping "tunes" - or even a halfway decent song by a group like Bon Jovi or Queen (if I am lucky) at top volume just makes me want to submit the driver of the vehicle to an urgent hearing test. The funny thing is that the drivers of the "Mobile Discos" usually manage to drive like one of Meat Loaf's songs - "Bat Out Of Hell"!!!
My biggest bugbear is one which I really think should be covered by the "Disability Discrimination Act". Mainly because it discriminates against the highest proportion of people (whether or not they are actually "disabled" themselves - they could actually be pushing a pram or a pushchair).
I know I have blogged about this several times before - but parking your car with most of it draped over the pavement is actually extremely dangerous. You parking your car like that may not pose any danger for you - but for those of us who cannot judge gaps (in particular), or who are in a wheelchair, or pushing a pram, and end up having to enter the traffic on the road (where you are actually supposed to find cars) this has been known to turn into a case of "Take Your Life Into Your Own Hands".
If you are too lazy to actually find a carpark (I believe these are actually designed for the purpose of parking your car safely) I have a favour to ask you. After you have finished draping your car over the pavement - please open the door on the side of the pavement to its widest extent. If you cannot open the door so it is at rightangles to the car - find somewhere else to park. This is especially true on sunny days (at least for me because my limited ability to judge small gaps becomes non-existent in bright sunshine).
We have all heard about reports of Disabled people being discriminated against - for example - Guide Dogs and Assistance Dogs not being allowed in Taxis, buildings not having adequate ramps and things to help people access them, etc. These are covered by the "Disability Discriminination Act". However, as you have seen - in my opinion - it doesn't go nearly far enough to actually prevent discrimination of disabled people.
There again - I wonder how many disabled people were consulted before the Act was written and passed into Law???
We need to be able to have confidence in things like the "Disability Discrimination Act" covering all scenarios which disabled people may face - without having to consult other laws (or even the HIghway Code) and without having to work out which law contradicts the Act itself. Or even - having to know that I cannot use the "Disability Discrimination Act" to cover me when I want to buy a pair of glasses - but I can use it because I am Registered Partially Sighted (which - correct me if I am wrong - would suggest I need glasses more than most people???).
I live in hope of the Act being re-written to cover all scenarios - but I am nt holding my breath.
f you are a long time reader of my blog you may have come across the term "Human Library Books" before.
I use this phrase to describe people (usually friends of mine) who have interesting experiences which I love learning about. The obvious difference between a "Human Library Book" and a more traditional one is that I can ask the Human version questions in order to help me understand what they are teaching me.
I was speaking to four "Human Library Books" today at the Social Media Cafe (I spoke to the fifth one after the event). Some of the "Books" had similar experiences whilst others were totally different.
An example (which has proven extremely educational for me) is that two of the "Books" have Epilepsy. However, one "Book" has "Normal" (as in triggered by flashing lights) Epilepsy - whilst the other "Book" has Stress-triggered Epilepsy (which I had never heard of before they told me about it).
The strange thing is that "Human Library Books" come in all sorts of disguises. This is because everybody has their own unique set of experiences.
For example - if I want to find out about Policing (for example) I can consult several "Books" whom I am in contact with, depending on what aspect of Policing I wish to learn about (and in which country), if I want to learn about life in a different country all I have to do is pick a country and speak to a "Book" who has got experience of living in that country - the same with a different religion, etc. I even know "Books" like the two I mentioned earlier with different health issues.
I am the sort of person who prefers consulting my "Human Library" if I have a question about something - because I know I am going to get an answer based on that particular "Book" and their experience.
For some strange reason - Corporate bodies are not exactly like that. They usually end up either consulting charities or proper paper-based Textbooks. Especially when it comes to things like physical disabilities and Mental Health issues. There is only one minor problem with that - the advice is either "one size fits all" or totally wrong to start with.
Take the "Book" who is typing this blog post. If you and I were in a group of people doing one of those "Team Building" exercises where you have to "file" people in order of different things - and the criteria we had to file ourselves on was the subject of who has got the worst sight - you and I may decide to file me in different places based on our experiences of my sight. Unless the specific criteria was "file in order of the strength of prescription of glasses or contact lenses" - in which case we would both have no choice but to put me at or near the end with the strongest prescription.
The paper-based textbooks only deal with general theories about different disabilities and Mental Health issues and their effects on the people who have them. This is especially true if they are written by academics. (These are the ones which I can prove wrong in a matter of minutes when it comes to visual problems - subsection Myopia.)
Some of the charities - who supposedly exist to either help or speak up for Disabled people or those who have Mental Health issues - do not actually have any member of staff with the issues which are being talked about by the charity. How are they supposed to provide help and support if they have no personal practical experience to use???
It is all very well corporate organisations such as Councils, Construction companies, Organisations who run Festivals, etc, consulting the Charities, etc, for advice about how to make their building accessible for different disabilities. What they fail to realise is that every single disabilitiy or Mental Health issue has its own scale of severity. For example - all seven of the "Books" (including myself) in our little discussions wear glasses at least part of the time. This would indicate that all of us have got some kind of sight problem. However, it would not (at least in my case) indicate the exact severity of the problem - or all the factors which combine to make it that severe. You need to consult each separate "Book" to find out the exact severeity of the sight problem and what the "Book" you are consulting would wish you to do to make their life easier for them.
This may sound totally daft but - surely - instead of asking people who have no practical experience of dealing with the issues you have come up against - it might be a good idea to ask someone who has got that particular issue???
Before you try to tell me that there are people who are qualified to discuss things like Disability and Mental Health - due to the fact that they have got paper qualifications coming out of their ears - I would answer that by saying "by all means feel free to ask any Brainiac you want to - just don't be surprised when you come across someone like me who seems to live for proving the "Experts" wrong".
I know I have said this elsewhere on my blog but - and the two "Books" I was discussing this subject with agreed with me - we need to value practical experience more than paper qualifications. Especially when it comes to subjects you cannot get paper qualifications in the Practical side of - ie, a PhD in Psychology and having practical experience of a Mental Health issue are two very different concepts. The same with a degree in Optometry and having practical experience of severe myopia, photophobia, lack of night vision, a total inability to judge speed to distance ratios, problems with angles and depth of field, etc. (That little list actually describes my sight problems in a nutshell.)
I was informed that I am "Pro-active" today. My answer to that is - if I don't make a fuss about the challenges I face due to my sight nobody else will. Apart from that - if the Disabled "Community" (and I really hate using the word "Community" in that context), including both the physically disabled and those with Mental Health issues, don't stand up for ourselves and start shouting about the problems we face on a daily basis - whether or not it is connected with the issue itself or the stigma which is attached to some issues by Society - nobody is going to start shouting for us.
My blog contains posts on the challenges I face due to my sight in an attempt to educate people about them. This is my way of doing my bit when it comes to being part of a large section of "Human Library Books" on the subject of "Disability". However, my blog also contains posts on other aspects of my life which this "Book" is also happy to discuss with you - all you have to do is ask me.
I am going to leave you with a song by Richie Sambora which I always think of whenever I blog about my sight. The song is called "Undiscovered Soul" - the relevant lyrics are "When you walk that road - you walk alone. Just an undiscovered soul in the great unknown. When your only hope is to find a home. Just an undiscovered soul in the great unknown".
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