The Difference Between “Want” And “Need” (Or – The Best Way To Get Me To Accept Offers Of Help)

The English language is very strange sometimes. Different word combinations can get different reactions from different people. There are certain words which set my teeth on edge whenever I hear them in certain sentences which are directed at me.

One of these words is “want” – especially if you are trying to offer to help me. This is the quickest way on record to get me to refuse your help.

Sounds strange, doesn’t it??? Allow me to explain.

To me – any offer of help with the word “want” in it automatically puts me at a disadvantage (as well as highlighting the fact that you know you can do something I cannot). Apart from that – I usually end up feeling steamrollered into letting you help me in your way. (This is particularly true when I have difficulties with things to do with my sight. What might work for you might leave me in a worse situation than I started off in.)

Also, my independent streak cringes at the idea of expressing a “want” for help – because what I actually want is to be able to do it on my own.

If you would like to offer your help try replacing “want” with “need”. That is closer to the truth. Plus it also makes us equals in my brain. I am more likely to make specific requests because I will assume you actually want to help me achieve my goal.

The best way to get me to accept an offer of help is – “Do you need …?” (The best ending to that question involves some indication that you have some idea of what I am trying to do – for example – “do you need me to move that chair?” if I have got a tray in my hands and I am walking towards a table (a hint – I will always try to slide things like full cups onto a table especially in the absence of a tray).

Next time you offer to help someone ask them if they need help. You never know – they might be more willing to accept then.

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Life Can Either Make You Or Break You (Or – How I Manage To Muddle Through)

There is something strange about having what are tantamount to two terminal diagnoses on top of an existing lifelong Disability – the terminal diagnoses appear to worry everyone else more than they worry me.

Yes – when I first found out about the Cancer prognosis (as in – the fact I am a “Palliative Care” case) I was scared stiff. However, that was because the Doctors who told me about the “Palliative Care” bit forgot to mention one minor piece of information – my “Expiry date”. When you know that your Mum died within a month after being told her cancer was terminal you might be forgiven for thinking the same thing will happen to you (even though you feel no effects from your cancer). I found out my “Expiry Date” around six weeks after the diagnosis – and that made me feel much happier.

I suppose I had a bit of a “headstart” when it came to being told about the cancer and the Heart Failure. Correction – I actually had two headstarts when it came to the Heart Failure. I had actually spent the past 20 years wondering whether the operation I had had as a baby was going to cause me serious problems sooner or later (I was born with a hole in my heart which was operated on before I was 6 months old).

The other “headstart” was connected with my sight. If you spend your entire life having to fight not only a part of your body which is defective but also the attitude of everyone else as a result of it – fighting minor things like cancer and Heart Failure are just another couple of irritations.

Yes – I did say “minor things like cancer and Heart Failure” because that is how I think of them. As long as I keep taking the tablets and keep appearing at assorted Medical appointments I know I am not going to expire just yet.

I am an expert at working around my limitations (when I find them). I know what keeps me happy, as well as how to set little challenges for myself to give me something interesting to do. When I want to do something I will get it done – by the same token – if I just want to hide away and only have verbal contact with a particular friend of mine I will do that.

You can take bad things happening to you one of two ways. Either you give up and crawl into a corner awaiting your fate or you come out fighting and learn from what is happening to you. (Well, there is a saying – every day is a school day!)

I have never exactly been what you would call a raging Optimist – I tend to veer towards being a Pessimist. I would actually classify myself as a Realist. My Modus Operandi is – we are all going to die anyway so what is the point in worrying about when or how it happens??? (I sometimes remind myself that I have already cheated death once so I can be grateful for that.)

There is an excellent book which I read a couple of years ago which made me realise we have the wrong attitude towards Life and Death – it shouldn’t always be about the quantity of life but the quality of it. To me – the idea of keeping someone alive who is seriously terminally ill with no hope of a cure is plain cruel. Especially when that involves the expectations of Society being geared towards “Life at literally all cost” (including the happiness of the patient themselves). I saw that in action with my English Grandma in the years between her cancer diagnosis and her death – watching her downward slide was something I hope never to repeat (she had other complications, including diabetes and advanced age).

Life really can be good to you or it can be extremely cruel. If you are one of those who manage to sail through life without any major disasters affecting you – I am extremely happy for you (just be prepared for all eventualities). If you are like me and you sometimes wonder if it is really worth the fight to keep going – you have my genuine sympathy (and a stack of BIG HUGS too).

I want to finish by saying this – if you are someone with a religious faith you may find comfort and strength in that. For those of you who are not remotely religious (no – I am not going to preach at you) you have a strength deep inside you – use it. Oh – and don’t forget to lean on your friends and family too.

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Its that time of the year: SAFDI’s last

Its that time of the year: SAFDI’s last [free] meeting at Woking FC. Its Thursday 21st between 1000 & 1300. All are welcome. http://ow.ly/i/BfP4v

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My Favourite Christmas Carols

I have got two favourite Christmas Carols – one to listen to and one to sing. I got a blast of both of them this week.

On Monday night I heard my favourite female singer sing “Oh Holy Night”. If I am honest I actually found this song very creepy before I heard her sing it – all the previous versions I had heard were sung by men and they sent chills down my spine (not in a good way).

My favourite Carol to sing is an interesting one because I used to know at least one verse in the original German. I do know one verse in Dutch (I have got the whole Carol written down in Dutch somewhere) but I actually have an extreme dislike for the English version. Let’s just say I like singing the verse I know in Dutch as a memorial to my Mum. Well – we did sing one verse of it in Dutch together at a Carol service in our only public performance as a duo.

“Stille Nacht” (or “Silent Night”) was originally written in German – then translated into other languages. (The first words in both the German and Dutch translations are “Stille Nacht, Heilige Nacht” – just pronounced slightly differently.)

There are other Carols I like singing – mostly ones with descant parts (my favourite descant part is the chorus of “O Come All Ye Faithful”).

I must admit that my favourite Christmas song is not exactly something you can sing in a Carol service – although it has been sung in my church. I love the way Noddy Holder screams “It’s Chrrrriiiiisssstttmmmaaassss” near the end of “Merry Christmas” by Slade. (He also has a line in “In The Army Now” by Status Quo, which I find amusing.)

I just wish shops would save their Christmas mixtapes for the middle of December onwards. Being deafened by Christmas songs at the beginning of December is not my idea of fun.

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Why Names Matter (Especially The Correct Pronunciation Of Them)

The one thing I hear most often when I introduce myself is “That’s a nice name”. The second thing is “That’s an unusual name”. Very occasionally I hear a surprised tone of voice with a Dutch accent exclaiming “That is a Dutch/Belgian name” (depending on which country the other person comes from).

The fun really begins when people see it written down. Correction – when Native English-speaking people see it written down. My favourite memory connected with that was when a friend of mine (who died recently) first took notice of how it is spelled. He was going through a list of names – matching them to the people present in the group. Names like Derek, David, Sheila, Rosemary, Wendy, Ian, Steve, Gerry, John, etc, were correctly matched to the human or humans they belonged to. He was left with “Ineke” – he was also left with a spare human (me). Now – by this point my friend had heard and said my name several times with the correct pronunciation. I cannot remember the exact phonetic pronunciation he used when he read my name but I can remember feeling sorry for him when someone else corrected him.

I was reminded of this when I read a report about the Gymnastics coach for the England team getting into trouble. The coach’s surname is nowhere near as difficult as my first name but it would provide some headaches for any reporters (and a lot of earache for me). Mr van Hoof may well be used to having his surname pronounced incorrectly but it still grates on my ears if the second part of his surname sounds like a horse’s foot. (A tip – the Dutch “oo” sound is the equivalent of the English word “oh”, the Dutch “oe” sound is the English “ooh”. The Dutch will write “Hook of Holland” as “Hoek van Holland” – there is no difference in the pronunciations of the first word in each case.)

Mispronunciation and misreading of foreign names can provide hours of amusement. However, it can also cause embarrassment as well as security issues – as my Mum and I have both experienced.

Misreading “Jacoba” (my Mum’s actual first name) as “Jacob” not only gave her an accidental change of gender – a credit card in the name of “Mr Jacob Poultney” wasn’t too bad – but it also nearly meant she ended up admitted into the men’s ward of a hospital (until she convinced the nurse on the desk that she was indeed the person they were expecting).

The security issue came as a result of her maiden name. After you have had the correct pronunciation of “Hoogendoorn” drilled into you since before you could speak your brain will automatically flag up that pronunciation. This doesn’t help if you are dealing with English-speaking people who would like to prevent you from accessing other people’s Bank accounts. I found out very quickly that having my Mum’s maiden name as a security question is a very good way of even keeping me out of my own Bank account – especially when using telephone banking. Give Dutch pronunciation of “Hoogendoorn” and you will hear “Sorry – you have failed your security question”. Trouble is – I never remembered to use the English mangling of it.

I could say that mispronunciation of my first name is disrespectful – until you learn that even I actually mispronounce it slightly when I am in England to make it easier for English people to spell (the Dutch version sounds like it should start with an “E” instead of an “I” and the “ne” sounds more like “nut” – the “ke” bit (“K” sound) is the same in both versions. The ironic thing is – when reading it most English people will miss the last syllable.).

Names form a large part of our identity. Getting them wrong can actually cause great offence, as well as other problems as described above. Some people – me for example – may take pity on you and allow you to use an abbreviation of their name. Others – like my Dad – will expect you to use the name they originally introduced themselves by (his is nice and easy).

Next time you are introduced to someone with an unusual-sounding name – instead of saying it is a nice name try to prove you think it is by remembering the correct pronunciation. You will be rewarded with a smile and a happy person.

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Logic And Sideways Thinking Do Not Mix (Or – Why Teaching Yourself How To Learn Can Be Difficult)

This week I read an article which actually made perfect sense to me – just not for the exact reason stated in the article. The reason it made so much sense was explained by one sentence – “I didn’t know how to learn”. The article was about a student with Autism who ended up being homeschooled because they couldn’t cope in an actual school.

We are told that different people learn in different ways – some of us learn best by doing, others learn best by reading, etc. What happens when the student has to learn how to cope with the equipment or methods you use to teach them before they get on with learning what you are teaching them??? What happens if their way of thinking is absolutely nothing like you are used to??? Good luck.

Anybody who knows me will tell you that my brain doesn’t quite compute things in the same way as other people. They will also tell you that I can ask the strangest questions when I am interested in a subject. (On the flip side to that they might also send you to me if you have run out of ideas to solve a problem. My ability to think sideways usually results in suggestions which nobody else will think of.)

This may sound strange to you but I managed to teach myself a lot at school – I have different coping strategies for things like reading textbook-sized print, navigating strange staircases, lighting conditions which make my life difficult, etc, which you would probably do automatically.

However, the really interesting thing is my version of “Logic”. When I was younger my Dad taught me how to program a computer so it could do simple sums. One line I remember is “If…then…” – as in – “If 5 + 5 equals 10 then show 10”.

Well – you have heard of the “if it walks like a duck and quacks like a duck it must be a duck” idea??? My brain doesn’t usually work like that – it has to actually look like a duck!!!

Here is an example – my brain tells me that blue flashing lights mean there is an emergency services vehicle in the vicinity. It also tells me that small orange flashing lights are vehicle indicator lights. So far so good – that works for eleven months of the year. Get to the middle of November and that goes out of the window – entire houses have been known to turn into vehicles (even the fountain in Leicester’s Town Hall Square has turned into the site of a major pileup of Emergency Service vehicles). Let’s just say that you can have flashing Christmas lights – just not colours which I associate with traffic.

My way of identifying humans can also be interesting – especially when it comes to remembering names. Some of them are simple – like an Australian man called Alan gets turned into “Australian Alan”. Others are either connected with objects or places. Another of my friends recently got filed in my brain under “Map”. Their first name starts with A and their surname starts with B – “A to B” is not only another name for a route but it also has the same amount of syllables as their first name of Anthony.

I actually count myself lucky that I have got such bad sight as I think literally seeing things differently to other people (especially when I haven’t got my glasses on) makes it easier for me to metaphorically see things differently as well. Just don’t try to get me to think in the same way as everyone else – it makes my brain hurt too much.

We should embrace different ways of learning. However, we should also be prepared to alter our teaching methods to suit our students. You can give me a book to read, let me do something myself – even if you don’t think I will succeed at it (driving a double decker bus definitely told me that I was never not going to be a danger if left in charge of the steering wheel and pedals of any kind of motorised vehicle) – or let me ask the kind of questions which help me learn.

The saying that “Every day is a school day” is true – however, there is no need to make learning as difficult as some of us found our time in compulsory education.

And – no – I wasn’t joking when I said about driving a Double decker bus. It was at an open day for my local bus company several years ago.

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Inclusion Doesn’t Need To Be Difficult (Or The Day I Didn’t Actually Feel Like An Afterthought)

On Saturday afternoon I went to an event at the church I attend. It was a “Ladies Afternoon” and I really enjoyed it.

Now – had the people in charge of planning the event actually gone out of their way to make it as easy as possible for everyone to feel part of it – I suppose they could have issued every lady who booked to attend with a piece of paper. On this piece of paper would only be two questions – (1) Do you consider yourself Disabled? And – What Reasonable Adjustments would you need to be able to enjoy this event in the same way as everyone else?

From my experience of job interviews that part of the “Unequal Opportunities” Questionnaire usually gets ignored anyway.

It is surprising how people who have known me for a long time appear to have a habit of forgetting about me when it comes to planning events for groups of people. Especially when craft activities are involved. Drawing, cutting shapes out of anything, attaching cotton, etc, to anything through any small hole, are things I will steer well clear of. I love gluing and painting things though, as well as making jewellery – anything that does not involve good hand-eye coordination or extended periods of squinting or peering at things.

Saturday’s craft activity was something I could do independently. It was only a case of putting nail varnish on a wine glass but it told me that the organisers actually wanted me to feel like I was a full part of the event. I hate asking for help (especially when I end up feeling like a 4 year old in need of adult supervision as a result).

I realise there are different levels of Disability and it would be difficult to create an event where every single Disabled person felt included in a smallish space like Saturday’s event.

However, in my case at least, all it takes is a bit of thought and going for something totally idiotproof.

I know my own limits and – whilst I will happily go further than them occasionally so I seem like the rest of the population – going further than them drains me mentally. It also makes me feel really lonely – even though I might hide it from public view.

The funny thing is – two of my friends have proven themselves to be very easily trainable when it comes to making life easy for me. I don’t even need to ask them to make changes to things – they see me appear and they make the changes anyway. I have only known one of them for just over a year.

All it takes is a little thought – and listening skills. If I tell you that I cannot do something or see something I will usually also automatically emit suggestions as to how the situation can be improved. Please listen carefully to me when I do because I also give my reasons.

I know this is almost impossible but I would love to be able to do everything everybody else can without worrying about whether or not I will be able to enjoy it without having to make allowances for everyone else’s ignorance.

I live in hope.

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