|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.
I posted this on Facebook after seeing a status about bullying which had been put up by one of my friends. You could say it was my reply to them.
There are times when I wish I could lend people various bits of me so they could experience life as I do.
These are mostly things like my eyes and my physical scars.
However, I rarely wish to lend anybody my mental and emotional scars - I wouldn't even wish to lend them to the people who gave them to me.
I have heard some of you lot tell me how inspirational you think I am for keeping going and keeping smiling through my current escapade. The funny thing is that - to me - cancer and heart failure are not the worst things I have ever had to deal with. I have got professionals medicating me and keeping an eye on me, as well as friends who make me smile, feed me, water me, apply hugs, etc. I may be on my own but I never feel lonely.
I grew up knowing I was different from everyone else - and trying my hardest to be the same as them. My pesky sight made it a lonely existence at times - a *very* lonely one indeed.
I would say that around 5 of you were around me during the loneliest times (one of you being paid for the privilege). I am not joking when I say I came closer than you will ever know to killing myself during my first term at Secondary school. To be honest I consider myself lucky that I didn't have the internet at that time otherwise I might not be here now.
Being bullied is bad enough - being bullied for something which you hate about yourself anyway is the cruelest thing anyone can do.
I am not going to jump on the bandwagon of "we need to tell the children of today to be kind to each other".
Instead - we need to *show* the children of today that they are valuable, that their differences are what makes them special, that -even if they are not academic - they can still succeed.
Bullying is worse than cancer. After all, cancer may eventually kill you but at least you have people fighting it with you. Nobody fights with you when you are being bullied - there are no specialists with degrees coming out of their ears working on cures for bullying - there is no fundraising for research into what makes children and adults (I was also the victim of bullying in my last job) bully others less fortunate than themselves.
If you would like to borrow my mental and emotional scars that came as a result of bullying be my guest. I will gladly lend them to you.
Bullying should *not* be seen as a "rite of passage" through life. It should be both seen as and treated as a serious crime (I think you will find physical and verbal assault are both classed as criminal offences - and there is such a thing as "corporate manslaughter").
You may think I am overreacting but - if you had had my experience of it and treated some people badly as a consequence of it - you might think very differently. Bullying leaves scars which last a lifetime - and some scars from it never heal.
|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.
|I don't know if you remember the old TV gameshow “Blankety Blank”? It was the one where contestants had to give answers which matched the “Celebrity” Panellists in order to score points and win a “Blankety Blank checquebook and (useless) pen”.|
What reminded me of that gameshow was a couple of things which happened recently – and they both had the same result. The result was a very pleasantly surprised and seriously confused Ineke (not to mention a slightly embarrassed Ineke as well).
I have never thought of myself as “conventionally clever” - second thoughts – I have never thought of myself as “conventional” full stop. Or “clever” for that matter.
In fact, if you and I were to write separate lists under the heading of “Ineke Is...” and compare them I very much doubt that the lists would match up.
Well – OK – there are certain things which we would agree on (only because they are blazingly obvious);
I am Human (although I sometimes seriously wonder about that).
I am of the Female Species (although I have been called “Sir” a few times).
This next bit is purely my opinion about myself (feel free to disagree with everything you read from now on in this blog post).
I am (at least) Half-Dutch. Not only due to the fact that I have one Dutch parent and one English parent – I also have a Dutch first name. I identify more easily as Dutch than English.
I am seriously shortsighted (to the point of being Registered Partially Sighted).
I am unconventional.
I am smart but no way would I call myself “clever” (especially when you read my list of qualifications). My “cleverness” cannot be measured in conventional ways.
I am good at hiding in plain sight. Well, I get that general idea from speaking to some of you who have read Inkyworld and been amazed by the challenges I face due to my sight. It is quite funny when people tell me that they didn't realise my sight is so bad (the clues have always been there – you just have to watch me carefully).
I am someone who loves learning – I just have a major allergy to classrooms and teachers.
I am good at “Sideways thinking” - to the point where my brain starts to hurt if it is forced to attempt to think in the same ways as most other people for very long.
I am a Bookworm. There is only one thing I love more than reading – and that is writing.
I am creative with a very vivid imagination.
I am a lover of words, language, dialects, and accents.
I am happiest either on my own or in a one-to-one situation (or in a very small group with people I know and trust).
I am a thinker who is comfortable spending time with their own thoughts.
I am prone to bouts of thinking my only use is as a Lab rat for other people to experiment on.
Remember I said I am smart but I wouldn't call myself clever??? There is a very good reason for that. If you measure my knowledge in “paper” qualifications you would come to the conclusion that I am not very educated (four GCSE's at C Grade or above and a handful of certificates). If you look at me you might not think I am the cleverest creature on the planet (unless you are one of those brilliant humans who sees glasses as a sign of intelligence). However, if you measure my knowledge in whether or not I can hold my own in a conversation with a Brainiac you may be surprised. The best way to measure my knowledge is to watch me in my day to day life (or read my blog) as I cope with challenges that you don't need to pay attention to – as well as doing things which have a rather fascinating habit of amazing people because they don't expect me to be able to do them.
Yesterday someone paid me a very unexpected compliment when they said that my blog is interesting and that they had learned things through reading it. Julian Harrison (yes – you are correct – he has been mentioned on this blog before) is one of my favourite Educators because he serves his education in easy, non-threatening, bite-sized chunks. These chunks are called “conversations” - and they give my brain a really good workout. He could make both of his areas of expertise seem really threatening (they are Mental Health – which he has got both professional and personal experience of - and the Holocaust – which he hasn't got direct personal experience of but he is an encyclopedia on that subject) but he is open and honest enough to make me feel very comfortable being educated by him.
When I thanked Julian for his compliment he said “the day we stop learning from other people is the day we cease to be human”.
I am never going to feel very comfortable blowing my own trumpet. I always think I could be better at things. However, there is one thing I will admit to being good at – being me.
I was going to finish by quoting some lyrics from either “The One And Only” by Chesney Hawkes, or “Last Man Standing” by Bon Jovi. However, I have decided to quote you some lyrics from the song which inspired the name of the “Being Me” section of this blog -
“Cause I'm being me. Before the night is over you'll be here. But you won't see - no you won't see - what you've got here. You've got me”. (From “Being Me” by Plaeto)
Quite what you make of me is entirely up to you.
|I have been told off by two friends of mine on Facebook. Well, I suppose they did kind of have a point. You see – I had put their names (among others) on a list of humans who inspired me and made the world a better place. Before you say anything – they were not complaining that their names had been put on the list – they were complaining that mine hadn't.|
When I pointed out that my name didn't belong on that list (after all – I cannot be inspired by myself) they still didn't like it very much.
This got me thinking – how do we decide who and what inspires us???
Obviously, we can be inspired by a “celebrity”, or a historical “World figure”, or a certain book or song. We can also be inspired by our friends and family, or even our religious beliefs (if we have any).
Most of the people who have inspired me are known to me personally (some of them have even been mentioned in this blog before now).
Just out of interest – I found something on Facebook which said “you can only have 5 things – what are they?” - I didn't have to think very hard about the first item because I can still remember the first time I saw it (and was allowed to touch it).
If they were asked to name something they find inspirational - most people would (if they actually like reading) would probably name a book by one of the great Classic authors, or a biography of some historical figure??? Some people would even name the Holy manuscripts from their religion???
Not me! My most inspirational book is a slightly obscure one which is out of print now. You may be surprised to learn it is written in the English language. It is a children's Science Fiction book. You could say that it is partially responsible for the existence of “Inkyworld” - if I had not either met the author or been able to get my paws on the book when I did, the chances are you would not be reading this now.
I can still remember when I first saw a copy of “Spellbinder” by Stephen Bowkett. It wasn't so much the book itself which was the inspirational thing – it was the fact that (to me at least) it showed you could actually get paid to daydream on paper. What made it even better was I knew the author. (The fact that the author was just about the only member of his “real” profession who I didn't fantasise about skewering with a window opening pole and barbecuing over the Bunsen Burners in the Science classrooms at that school was an added bonus. Did I ever tell you I have a vivid – and sometimes seriously twisted – imagination???)
There is something which I always find intriguing. People can find other people inspiring for the strangest of reasons. These can range from rescuing people from certain death in situations like War, and natural disasters, to being able to sing brilliantly, to not giving up in difficult circumstances, to – what I see as – just living their life in the only way they know how to.
I said at the beginning of this post that I don't find myself inspirational. In fact, if you were to ask me for a list of “Inspirational People” - and forced me to put my name on it – you would be reading a very long list of names before you saw mine, right at the bottom, where it belongs.
You know something? It feels very strange to be told that I am an “Inspirational Person” myself. I haven't done anything remotely remarkable – unless you count existing??? I can think of people who are braver than I would ever be, who are better at writing than I will ever by (and one of them has been mentioned in this blog post), who are a lot cleverer than me (and not just because I can list Brainiacs with PhDs in various subjects amongst my friends), who are better at being friends than I will ever be. Basically, I am just me – muddling my way through life as best I can.
If you asked me to list my “Unique Selling Points” my list might surprise you.
My favourite “skill” is my ability to think sideways. To me – the only time when “one plus one makes two” is when you are doing maths. Let's just say that I am the one most likely to come up with an idea that people will think is too crazy for words but which might actually give the results they are looking for.
I have been told that I make a good “Sounding Board”. One thing I do know is that I refuse to judge other people until I have experienced them for myself. Don't expect to be judged on what you say to me – you will be judged on how you treat me.
On the flip side of that I love finding out how people and things work. The way to find out if I am interested in you for any reason is to wait for questions. The more questions I ask you the more interested I am (the same goes for the more “sideways” questions I ask you).
I can be a fountain of seemingly useless information (my favourite fact that I learned recently is about Iran getting its modern name as a result of the Nazis deciding that it was the base of the “Aryan” race – the original name of Iran was along the same lines as “Aryania”).
I will always stand up for people who are marginalised. After all, I know what it feels like to be bullied, to be Disabled, and to feel totally alone and misunderstood.
However, my favourite “Unique Selling Point” is that I am nothing special – I know how hard I have had to work to get where I am now and I know I have got a lot further to go before I can join the “Hallelujah Ineke” Club.
The irony is that my school reports almost all said that I “could do better” and I “must try harder”. The truth is – I have always felt like I had to work at least a hundred times harder than everybody else just to be the same as them. This means that I feel very uncomfortable when people start praising me for doing what (now) comes naturally to me. To be perfectly honest – when people start telling me that they think I am inspirational to them I start getting seriously worried because – in my experience – praise usually comes closely followed by a “but if you....”.
Yes – I am tough. Yes – people tell me I am good at writing (mostly humans who are way better at writing than me). Yes – I will do anything for my friends. Yes – I continue to show courage through adversity.
Does any of the above make me “Inspirational”??? Not in my eyes – it makes me human.
If you want to think I am “Inspirational” feel free to do so – just don't tell me. On second thoughts – if you insist on telling me try showing me instead.
|As someone who was put through the Mainstream Education system as a “Special Educational Needs” student from the late 1970’s to 1990, I wanted to find out what life is like for the people who have to teach people like me (the teachers).|
After I had left school one of my former teachers told me the staff used to have meetings about what to do about me (it might have helped if they had invited the one person who could have helped them – ie, me). This was a long time ago and I don’t have any memories of such meetings (though of course they may have happened). Nor do I recall being given any special instructions or equipment, if such existed, for helping you, given that you were in a mainstream class. Absolutely you should have been invited to such meetings, and / or there could have been discussion groups where pupils and staff could openly air their concerns.
This inspired me to write the poem below;
I don't understand.
I know I'm not very good,
But I didn't think I was this bad.
My head's so stretched,
I just can't cope.
Feels like someone's.
Put my brain on overload.
I don't know why,
Everyone's going on at me.
Where's the door,
To 'Escape Capsule 3'?
You think I'm living,
In a daydream more often than not.
Dear Sir, to stop me doing that,
Would turn my life support machine OFF!
You say I could do better?
Well, I couldn't feel much worse.
It wouldn't surprise me,
If I left school in a hearse.
Don't get me wrong,
I know you're not to blame.
I want to ask for your help,
But the other kids would still call me names.
Now do you understand?
I never was very good.
But I wasn't really that bad!
I asked my favourite teacher from my days in Secondary school if he would be prepared to collaborate on this blog post and discuss “Teaching and Sight Problems” with me. Luckily he agreed.
Steve Bowkett was an English teacher when I first met him in 1985. He has also written several books – and a poem!
Hi Steve – thanks for agreeing to do this.
My overriding emotion when I look back on my time at Secondary school is one of overwhelming loneliness. I felt like I was the only person in the school who had difficulties. From what I can remember – nearly all my teachers appeared to be “normal-sighted”. I would have loved to have one teacher who had some kind of disability so I could see how they coped. It would also have made me feel less outnumbered.
My first question is – do you think it would help if teachers had practical experience of sight problems (and other disabilities) either as a result of being disabled themselves or attending courses where they were given a chance to experience exactly what it is like? I think there are issues around recruiting disabled teachers specifically because of their ‘practical’ experience of disability. They may or may not be good teachers and their disability might not give them insights into some pupils’ problems. Also, if for example a sight-impaired teacher were employed hopefully to put his / her experience into practice, would teachers with other disabilities need to be employed to bring their own insights into school policy? I would also have concerns that teachers with disability may have difficulties with some pupils who don’t understand what they’re going through (which is a nice way of saying, some kids would play up!)
I take the point about loneliness and frustration etc, and would certainly advocate disabled people being involved in talking with teachers on courses, through INSET sessions, YouTube interviews etc.
My second question kind of leads on from that. I don’t know what it is like in schools nowadays but – speaking personally – would you (as a teacher) be prepared to sit down with a student and listen to them when they told you about the difficulties they had in accessing your methods of teaching? (In fact, most of the time, you were the one teacher I found easiest to cope with. There were two other teachers whose lessons I came to dread because, not only did their teaching methods make my brain hurt but their general demeanor indicated they would not have welcomed me asking for the kind of help I needed.) Personally I would always be prepared to sit down with a student to discuss issues around their disability. Some schools nowadays probably build such dialogue into their ethos and policies. Practically, I think teachers are more pressured now than ever because schools are still sausage-making machines and, alas, seem to be run on a corporate/business model where results are all. This means that time is at a premium for most staff – though of course accommodating people with special needs would improve their educational experience and lead to better results.
You’ll appreciate that I go into schools nowadays under specific circumstances, as an author, so only get a snapshot of what any school is like. As always, there are good and not so good schools. Quite often I’m told beforehand that a child in a class is autistic, hearing-impaired, etc, and my impression is that many schools are much more aware of pupils with special needs these days than 30-40 years ago (can it be so long?). There is also more advanced technology available now that potentially can help – I’m thinking of sight-impaired pupils having access to visualisers, laptops, etc, and other devices that you probably know much more about than I do.
Being a “Special Educational Needs” student has a habit of inviting a different type of bullying than other students might be subjected to (even to the point where the student can feel like the teachers are joining in). This very quickly led me to the point of not even trusting most of the teachers. I can remember being shouted at by one teacher as a result of something which had happened – when I told them why I had done it (I told them straight out that I wanted to move to the secondary school in the village I lived in) I was left feeling patronised by their reaction.
If only I had had a teacher who I could have used as a go-between before things got to that stage. There was a (in my opinion top-heavy) pastoral regime at the school where I taught you, so potentially a support structure was in place. This does not mean that any given pupil would ‘get on with’ and feel supported by particular teachers. Another problem in my experience was that once ‘Baker days’ and the 1265 hours diktat were imposed on schools, meetings were called for the sake of being seen to be filling the time. I remember spending several hours as part of a ‘working group’ discussing some topic or other – I don’t remember if it was around the issue of disabilities – and our recommendations, which would require time and money, were ignored. On challenging this we were told by the deputy head that ‘the need had been identified’: beyond that, nothing ever happened. I suspect similar scenarios occur in some schools today. I would have loved to be able to sit with one of you teachers and tell you how I felt and how best to make my life easier. In some cases it would have been a case of making some minor changes to teaching methods, or the layout of a classroom, in other cases it would have involved asking someone to wear a jumper or a (different) coloured shirt. (White shirts and bright lights are a torturous combination when your eyes are sensitive to bright lights.) I would never have objected to you asking me to wear certain coloured shirts, etc, if it helped you to get on in class, though I appreciate that there were some teachers you would never have approached about this!
Would you agree that it would be a good idea for a teacher who a student obviously likes (or trusts) to be a go-between when it comes to telling other teachers about any problems the student has? (And does such a thing actually exist nowadays?) Even back then (when the world and I were young), form tutors, year heads, etc, were supposed to do that as part of their role. Of course, any given pupil might not like or trust their form tutor or year head, in which case the system falls down. Ideally it would be a good idea if a teacher that a pupil gets on with felt able to and comfortable with passing on that pupil’s concerns to colleagues. Practically speaking it depends upon how well staff get on with each other and whether that teacher would himself/herself feel comfortable talking to other colleagues about such matters. As I’ve suggested in my responses above, such a system probably exists in some schools but not others.
In your own case, in light of the occasions when teachers didn’t understand you or shouted at you, it would have been difficult for me to confront them directly if personally I didn’t like, trust or respect them – and frankly that included several members of staff! I would of course have highlighted issues to head of year or form tutor on an ‘official’ basis, but my own gut feeling is that support structures work best in schools where the people ‘gel’, where colleagues get on with each other and where such matters can be discussed informally as well as in a more formal way.
Do you have any other comments to add to this?
Really, to sum up, then and now there are good schools and poor schools in terms of addressing the particular needs of some pupils. I think schools generally are more aware of such pupils, partly because more research has been done in various areas of behaviour (ADHD, autism etc), and better technology exists now to support a range of special needs.
Frankly Ineke, I think our school was not brilliant in helping pupils like yourself. There were some intolerant / ignorant teachers there at the time, a few of whom you were unfortunate to encounter. I am pleased that you feel I was not one of those and that you could then and can now count on me to lend a sympathetic and hopefully understanding ear.
May your blog go viral!
By the way - in case you are wondering - the reference to "Escape Capsule 3" in the poem was about the classroom where Steve taught me English in my first year at Secondary School (E3).
|You could say I have been learning a lot about “Perspective” recently. Both in the Photography sense and the “Life” sense.|
Threaded through this blog post you will see some photographs by my favourite photographer – Derek Lee – which might give you a sense of how I am currently feeling about everything which has happened recently. (My world seems to have been tilted at a very strange angle.)
Where were we when I updated you last time??? Ah – yes – I remember now. I was the subject of an argument between two Doctors (GP and Oncologist) about an implant – and I was waiting for an appointment to see a Cardiologist, wasn't I???
Well, first the good news – my medication is now up-to-date. The implant was implanted last Wednesday and they have got the next one scheduled already.
I saw the Cardiologist last Monday. That was an interesting event. Dr Chin was very kind and respectful.
The strange thing was that when I was subjected to a Jump-lead Test (aka ECG) I was not offered a chaperone even though the human sticking the wires on me was a human of the male species – yet when the Cardiologist wanted to listen to my heart I was offered a chaperone (which one do you think might have involved me being topless???).
Anyway – Dr Chin (Cardiologist) scared me to death when he told me about the function of my heart - severely compromised – and the amount of leaks it has got in it (let's just say I think someone has taken my heart out and replaced it with a colander).
He did one thing which I was under the impression that would not be done due to my heart – he prescribed Beta-Blockers (reluctantly). He also prescribed another drug which ended up making me smile when I came to collect the prescription. More about that in a bit.
I was informed that he would not recommend Chemotherapy or Herceptin for me due to the fact I haven't got any reserve in my heart.
He also told me he wanted me to have both an MRI Scan and a 24hr Tape Test.
When I went to collect the prescription I was surprised to be shown two boxes (one box for each medicine) and a pill cutter. These were issued with the words “you will need to take half a tablet every morning – here is the cutter to cut them”. I had visions of having to explain myself to the Police as I was absolutely convinced that cutting your own drugs is illegal???
Anyway – that was Monday done and dusted.
On Tuesday I had an appointment with my new Heart Failure Nurse. She is very nice – she even explained things to me in a way that I could understand. (However, I am still trying to work out whether it is a very good idea to antagonise a poorly and malfunctioning heart – apparently one of the drugs I am now on is part of a group of drugs called “MRA” (the “A” stands for “Antagoniser”).
I have already told you about Wednesday.
Thursday was a blank day (I met up with a friend of mine and gave my ears a treat by letting them listen to an interesting accent which wasn't trying to give me Medical information).
Friday was a busy day. I started by going to the Social Media Cafe (my usual Friday haunt). Then I came back home for a meeting with the person I am working on my photography project with. After that I had a catchup appointment at my GP.
At my last appointment my GP had decided to try to do me a favour by telling me about a form he wanted to fill in on my behalf. I agreed to him doing this. On Friday he gave me said form and gave me a number to ring about it. Speaking to the DWP is soul-destroying at the best of times – Friday's conversations with them just made me lose the will to live.
I will keep the explanation as brief as possible – however, you will probably still end up getting confused.
I am currently on Disabled Living Allowance (DLA) because of my sight. The form the GP gave me was a special form so I could claim money due to my diagnosis. This meant I had to start from scratch as DLA is now being replaced by Personal Independence Payments (PIP).
Now – I had told every single being I spoke to at the DWP that I had this form. Half of them still asked me if I had only been given six months to live (no). Eventually I spoke to a very nice lady who obviously knew what she was doing because she talked me through the process and gave me an address to send the form to. I am now waiting to hear back.
Saturday I went to a wedding.
Sunday was Church then lunch with my Dad.
I was hoping to go into Leicester on Monday but it was too hot for me to get much further than the COOP near me before I decided to give up and come home.
Tuesday started off boring and then things livened up on my way to my Dad's house. I got a very strange voicemail message telling me I had to book an urgent appointment – no information regarding where and what for. I rang the number I was given and found myself agreeing to an MRI Scan this coming Tuesday. Had dinner with my Dad (which I cooked) and he gave me a lift home,
Yesterday I had a lovely morning with another of my friends.
This evening I am considering going to the Junkfood Project for my dinner but I will see how I feel.
This morning I received confirmation of both the MRI Scan appointment and the 24hr Tape Test appointments (Tape Test Monitor will be fitted on 21 September. I am now apparently in the sights of all three major hospitals in Leicester - Leicester Royal Infirmary for Oncologist, Glenfield Hospital for Cardiologist and (this is the strange one) Leicester General Hospital for the Tape Test.
I will keep you posted.
|Every so often people say things which start blog posts cooking in my brain, then other people will unknowingly add ingredients to the melting pot which end up making me feel glad that I waited with writing the blog post.|
The subject for this blog post is one such occurrence.
The idea came as I was sitting in Church on Sunday morning listening to Mathew Sheffield preach. It was one of those occasions when my brain wouldn't quite cooperate with what I was supposed to be doing (listening to the sermon with no distractions) and started shouting at me “BLOG POST ALERT – BLOG POST ALERT”. Before you think this is going to be a rehash of his sermon – well – it kind of is but with all known religious content removed.
As you know I am involved in an escapade which involves being viewed by various Medical Professionals and having all sorts of opinions thrown at me (although – come to think of it – nobody has said outright that my actions have caused the situation I am in).
The main thread of the sermon (as far as this blog post is concerned anyway) involved one poor guy in the Bible losing everything and ending up being abandoned by his three friends. They abandoned him after each one gave their opinion on the situation and the best way to put the situation right.
One of them told him that he must have done something to cause his illness (as well as losing everything he also had some kind of illness) and all he had to do to recover was to find out what he had done and attempt to correct it (sounds a bit like Glenn Hoddle's comments about Disabled people having done something bad in a former life).
The second one wasn't much more use – this one just fired off advice about what to do without listening to a word the man said.
The third one just made it all about them – a kind of “How do you think I feel?” scenario.
(I actually didn't mind Mat singling me out during his sermon when he asked me whether I would punch a Doctor who did option 2. The answer is – I have been more tempted to carry out that course of action than may actually be healthy for me – and not just on Medical Professionals.)
So – I had a blog post cooking in my brain. It was too hot for me to do very much at all on Monday. This meant blogging had to wait.
Then my attention was caught by a thread on Twitter by Nathan Constable on the subject of “Leadership and Motivational Posters”. (Well, to be honest, it was more about Leadership than the posters.)
When Nathan writes I feel compelled to read his output – he writes a lot of sense in a very easy to understand format.
One of his tweets said “If you don't understand yourself I think it is very hard to lead others”.
This is something most people appear to miss completely. I am talking about just about every human I have ever met who has had some kind of “Authority” over me. If you ask me the main thing they forgot was that they were likely to be subject to human error precisely because they were in fact human themselves. Also, them being human means that they are individuals with individual needs, desires, abilities, thought processes, etc. It is strange how that last sentence also applies to me, isn't it???
This brings me on to Nathan's next standout Tweet - “But the one thing I took from all of this is there is no one single all-purpose one-size-fits-all method of leading”. Wow – this is a guy who I would have no problem working for – sorry – with.
If you have ever met me you will know that I can best be described as a “Quirky Oddball” with what you might call a very strong allergy to conforming to other people's ideas about me. Some of this allergy is due to my sight, some of it is due to me being half-Dutch (have you ever tried to order a Dutch person around against their wishes??? This has a nasty habit of ending badly if you have not had previous experience.).
I am Ineke Caroline Poultney – I am an individual – therefore, the best way of getting me to cooperate with your wishes is to treat me as said individual. This involves simple things like talking to me instead of at me, listening when I say I cannot do something exactly in the way you want it done, giving me all the necessary information regarding what is happening and what you expect to happen (and be prepared for me to confuse you in some way – particularly if you happen to be a Medical Professional). Most of all – throw out all known textbooks which you think might give you a clue as to how best to deal with me. They don't have a chapter on me.
What I am trying to say in my usual “Inky-style” is – trying to force anybody (not just me) to conform with your preconceived ideas will just lead to trouble. This may sound unbelievable but even I have to guard against judging people by what I think I know about them.
We all need to pay attention to our thoughts and actions regarding other people.
The best thing to do would be “Treat Others In The Same Way As You Would Want Them To Treat You”.
|Every so often I end up reading books and blog posts on subjects which – to most of the general population – are not remotely connected and I can still come up with a connection between them which is not necessarily apparent.|
A recent case in point is my recent reading material – a book on Policing by John Sutherland, a book on Geography by Tim Marshall, and a blog on Mental Health law by Michael Brown.
On the face of the list above you might not see much of a connection. When I tell you that “Blue” (the book written by John Sutherland) and “Mental Health Cop” (the blog written by Michael Brown) are both written by serving Police Officers, you might start seeing a connection. If I tell you that the above-mentioned book and blog both touch on Policing and Mental Health (from very different angles) you might see more of a connection.
But what has a book about Geography got in common with both of them??? Well, the title of Tim Marshall's book “Prisoners of Geography: Ten Maps That Tell You Everything You Need To Know About Global Politics” does mention both Prisoners and Politics. So that might be the connection???
Sorry – it is a connection but not the one I immediately found. I suppose you would have to (a) read Tim Marshall's book, and/or (b) learn how to think sideways. (You have certainly come to the right blog for lessons in option (b), haven't you?).
The word that jumped out at me from the title of Tim Marshall's book wasn't “Prisoners” or “Politics” but “Maps”.
Not only do maps show you routes from A to B but the really good ones show you all the obstacles you may face (if you want to know a very interesting fact about India and China and why they have never invaded each other – read “Prisoners of Geography”).
John Sutherland's book reads like a map of his career in Policing (and his battle with Mental Health difficulties), Michael Brown's blog reads like an attempt at explaining the “maps” involved in deciding what course of action should be taken by which group of people when it comes to suspects with suspected Mental Health issues (as well as those dealing with such people).
Not only can maps be useful but they can also become a hindrance if you don't know how to read one, you start off heading in the wrong direction, or you follow the map as rigidly as some people follow their SatNav.
I think I might know what is going through your mind now. But Inky – laws are there to be followed and you will end up in serious trouble if you don't obey them.
That is true – in more ways than one. However, there are also laws that contain so many loopholes they are not much use anyway. Also, there are situations which are not actually covered by laws (usually because nobody has dreamt up a law to cover a situation which has never arisen before).
Here is a thought – what would happen if we made maps of people instead of geographical occurrences??? As in – what would happen if we made maps of people's abilities, needs, desires, etc???
I know I am in danger of straying into territory best suited to humans with some kind of qualification in Psychology, Psychiatry, or General Medicine here (and anybody with those qualifications can feel free to argue with what I am about to say next) but I have been thinking about this quite a bit - even before my current escapade started.
People seem to have some wonderful ideas about me (and I am not exactly using “wonderful” in its usual happy sense). They either seem to try to put barriers around me or they are amazed when I seem to act like everybody else. “Oh – poor Ineke. She won't be able to do such and such.”. Guess what guys – if there is something that Ineke really wants to do she will find a way of getting it done by any means within her power. She has been known to do nearly everything you can. Admittedly she has paid the price for it afterwards sometimes but – trust me – it was worth it. There are certain things which cost me a little more in mental and physical energy than most people (going to a cinema, going to strange places at night, etc) but even having to psyche myself up beforehand doesn't usually stop me if I really want to do it.
On the flip side of that we get the line I am getting nauseated and fatigued by when well-meaning humans say it - “You are so brave”. Trust me – this has been uttered in my direction more times that I can remember. Admittedly, some of the occasions when it was used were ones when I actually felt like I had achieved a goal by doing whatever it was which prompted the comment. Others (like me going on a train to Glasgow by myself) were not what I would call appropriate instances.
My personal background means that I am used to having to “Keep Calm And Carry On” when I don't want to. It also means that it is second nature to pick myself up and dust myself off when I run into difficulties (and it also makes me very uncomfortable with the idea of asking for help or making a fuss when I find myself unable to do either of those for whatever reason).
There is something strange which I have noticed about myself recently. I get more energy when I am allowed to be myself. There are certain humans who I love spending time with for that exact reason – I can say what I want and do what I want in their presence and they don't make me feel like an Alien. Feeling like I am being boxed in and I have to watch what I say and do just upsets me. I may appear to be the loudest, most blunt human you have ever come across or I may appear to be the one who is the most comfortable when merged with the local scenery – they are both me. In my “natural” state I am actually very quiet and prefer either my own company or just being with a very small group of humans who I trust.
I want to finish with something which amused me on Twitter. One of the Twittercops I follow decided to do a survey about whether or not people should stereotype others. As I said in my Direct Message to the Twittercop - “Good grief – anybody who tries to put me in a stereotype box soon finds out I am unique”.
|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.
|It feels like a long time since I have written any blog posts on here (and I do apologise for my silence).|
What can I say??? This being properly poorly escapade is really taking some getting used to. This is probably because – although I have official documentation on NHS letterheads that state I am seriously ill (to the point of it being not exactly life-extending) - most of the time I don't actually feel as though there is anything wrong with me.
OK – so I seriously considered calling an ambulance yesterday because I honestly thought I was running out of air. A clue – if I know you and I say “I am alive – put it that way” (and I am not smiling or laughing when I say it) when you ask me how I am I suggest you start worrying about me and not (as one of my friends did when I was seriously on the verge of calling an ambulance) laugh and say “you do make me laugh sometimes”.
So – where are we now???
I have had two appointments with the Oncologist and two appointments with the Heart Failure Nurse. Oh – and an Ultrasound Guided Biopsy.
The Oncologist is a nice lady (so is her Registrar). I am on Tamoxifen for the foreseeable future (the next couple of months at least). So I managed to dodge the Chemotherapy for the time being.
The first time I saw her the Oncologist did ask me a strange question which – to be honest – scared the living daylights out of me. “Has anybody told you you have got Marfan's Syndrome?”. Apparently I have got a few markers for it – one being my height (since when was being half-Dutch a symptom of a Syndrome???), one being slightly more flexible than most people, the last one being having a high palate (the top bit of your mouth). After “never heard of it” passed through my mind the next thought was “Good grief – not another thing I am going to die of???”.
Oh yes – the Oncologist wanted me to see a Cardiologist so they could advise on the best treatment for me. I am now in possession of a copy of the letter she sent to the Cardiologist in question (dated on the day of my first Oncology appointment). After seeing the first name of the Cardiologist I don't hold out much hope of a quick appointment – I have experience of “Medical” humans who answer to that first name (not as a patient though) and they seem to operate in a timezone oll of their own.
My next viewing of the Oncology Department will be in approximately three months (am waiting for the confirmation letter to come through).
The real downer is the Heart Failure thing. Although I did get a bit of a smile out of Friday's appointment (thanks to my very weird sense of humour).
Apparently the Heart Failure Nurse now thinks I may be a “Cause for Concern” (not as much as I think her scales are – but more about that in a bit). I have been either upgraded or downgraded (depending on how you look at it) from “I would like you to see a Cardiologist” at the first appointment to “I want you to see a Cardiologist at the second appointment.
If you read the blog post about my time in hospital you will know that the Nurses were worried about my blood pressure even then (it is lower than normal).
When you feel like you have done a circuit of Hinckley town centre on foot trying to find the hospital (thanks to Google Maps telling me to get off at the wrong bus stop) – you would expect your pulse and blood pressure to be raised due to the exercise??? Oh no – not mine. Apparently they were both lower than they had been the first time I saw her. Hence the upgrade (or downgrade) – and an ECG “just to make sure your heart isn't going to go into a strange rhythm".
Remember I something about me getting a smile out of the appointment due to my weird sense of humour??? Well, it was connected with a set of scales – a slightly less than accurate set of scales to be exact.
As a result of this flipping Heart Failure I have to weigh myself daily. If I gain or lose 2kg (or 4lb) in two days I have to either contact my GP or the Heart Failure Nurse because it might indicate a fluid imbalance. Fair enough – I weigh myself every day and (even though I wish I could gain a few kilos) I am now between limits.
On Friday the Heart Failure Nurse told me to step on her scales. Now – I know my sight is not all that good (and her scales were the old fashioned analogue ones) but even I could tell you that there was something wrong with them. Either that or I had managed to lose 4kg in the space of 6 hours (in which case I would definitely expect to be back in hospital). Luckily she admitted the scales were dodgy.
Now the only major concern (as far as I am concerned) is the argument between the Oncologist and my GP regarding some overdue medication which I am supposed to have monthly. I am not going to go into the story but – what I will say is that I am now worried that it may have an adverse impact on one of my other medicines if it doesn't appear soon.
Well – now you know as much as I do.
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.
|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.
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".
I wrote this article (in English) for a Dutch magazine - who translated it into Dutch for me.
In England I am what is known as “Registered Partially Sighted” - this entitles me to walk around with a white stick (which I never use).
I was brought up to be independent and not make a big deal about my sight problem (which means I try to act “normal sighted” as much as possible. I am severely myopic (nearsighted) – I also have a condition called “Photophobia” which means my eyes are extremely sensitive to bright lights.
I am half-Dutch (my Mum was born in Rotterdam) and I have visited The Netherlands on several occasions in my lifetime.
This may sound funny but – for me at least – The Netherlands doesn't seem to make as much of a big deal of Visual Impairment as the UK does. Life as we know it doesn't suddenly grind to a halt when the Dutch are faced with someone who cannot see as well as people may expect.
If I am going about my daily life in England I have to put up with signs I cannot see, bad lighting, obstacles in my way (usually racks of clothing standing so close together that I cannot see a way through them from a distance).
The Dutch appear to have seriously considered any difficulty I may have as I wander around The Netherlands (in fact – the only slight problem I have is the steps onto the older trains).
Dutch signs are big and easy for me to read. Even the “Backlit” signs are easy to read. That is before you realise that the Dutch seem to be trained in “helpfulness” when they see someone struggling in their shops, etc.
However, the best thing for me is knowing I can walk into a Dutch shop, cafe, or restaurant, without wondering if I am going to crash into anything on my way around. Dutch shops are nicely spaced out (even when they are very small).
As for the difference between public transport in The Netherlands and the UK. The Dutch buses have nice clear destination boards. I particularly love the screens you find on some Dutch buses, Trams, Metro, and Trains, which show you the stops the vehicle will be calling at before it gets to its destination. (Dutch people don't have to peer out of the window in the dark wondering where they are in relation to their stop.)
I honestly feel the UK can learn a lot from The Netherlands about how to integrate people with sight problems into society without making a big fuss. In The Netherlands I feel “Designed Into” my surroundings – unlike the UK – where I feel designed out of them.
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|There are times when words just fail me.|
I am looking at a booklet which I was handed on Friday by a friend of mine called Julian Harrison (yes - he has been mentioned in a previous blog post).
He would like your help with a consultation process relating to the information provided to people with Mental Health Issues regarding Advance Planning. This is so people know what to do when your condition worsens to such an extent that you do not have the capacity to make decisions for yourself.
Now - I am not exactly the most highly intelligent person on the planet but I am having trouble trying to break the information into manageable chunks in order to wrap my brain cells around it.
It is written in a language which is theoretically aimed at patients and their carers. However, it appears to have been written by someone who has never experienced the situation for themselves.
What Julian would like to do is find out how the information can be more accessible to patients, carers, and the "Generally interested".
If you have any experience of Mental Health Issues - and you would like to help Julian - please email him at email@example.com or call him on 07767297566.