The kindest word in all the world is the unkind word, unsaid.

Have you ever found yourself in a situation where you understand every individual word but the sentence still doesn't make sense? Those with experience of building self assembly furniture would probably answer with a resounding yes. Have you come close to tears of frustration when trying to communicate with someone apparently speaks the same language as you? If you have ever had to deal with an overseas call centre the answer is probably yes! For most of us those things may be irritating or even upsetting, but they only happen occasionally and then they are quickly forgotten. 

For people with Asperger Syndrome or Autism communication difficulties are a constant challenge. To some extent it is a hidden disability; people with Asperger Syndrome can often be pedantic and obsessive about certain subjects which other people find exhausting or even irritating. They find social interactions difficult because they are not good at reading or predicting situations and they often struggle to interpret emotions or the subtle subtext of what is being said. However these difficulties can be masked to some extent by a wide vocabulary and good linguistic skills, so other people may not realise that the person has not understood. Instead of being understanding, other people can become hostile and angry. 

On Saturday I met a 45 year old man who has been the victim of online bullying, because he didn't fit in. He hadn't done anything wrong, he was just a bit obsessive about his favourite subjects which other people found annoying. I felt terribly sad when this chap told me that he knows a lot of people, but he has no friends. We chatted for well over an hour and I realised that he is a very knowledgeable, interesting man who means no harm to anyone. I just want to make a plea from the heart, please don't be too quick to judge people who are a bit different because they may have a hidden disability. It takes all sorts to make a world, and just a little bit of understanding and tolerance makes the world of difference. 

Tears at times have the weight of speech - Ovid

I will probably get into trouble for writing this, but sometimes you need to find words to express the way you really feel. In the last couple of weeks Robbie has said two things that have brought tears to my eyes. The first was so unusual and so out of character that I had to check with him that I had understood him properly. He said that he felt as if he should wear a label saying ‘I may look alright but I’m not’. Robbie has had to cope with spina bifida throughout his life and he has such a good attitude towards his disability that most people don't even notice it - he just gets on with life. So his comment came as a surprise.

He explained that it was very hard to cope with chronic pain. I am well aware of that, but I learnt long ago that he doesn’t want to be treated differently because of it. When I have tried to avoid situations or protect him in various ways I have had my head bitten off and been told loud and clear “I'm not a (insert expletive) cripple you know”. He is determined to be Robbie, a person who just happens to have a disability rather than being defined by it. He can do almost everything that everyone else can; he just needs to pace himself and to be creative about the way he does things. He doesn’t need a lot of fuss, all it takes is just a little bit of understanding and the freedom to do things his own way without constantly having to make reference to his disability. His comment reminded me that even if he is his usual bubbly self with a big smile on his face it is still hard, but in true Robbie style he is ‘just getting on with life.

The second thing that he did that brought tears to my eyes was something he wrote on Facebook

“....as they say, 'behind every great man, there's a great woman', I am far from great, but I would not have survived the last two and a half weeks, without the love and support of Mrs J! Thank you Mrs J, I love you very very much x ♥ x”

I am certainly not a great woman, just a very determined one. I am like a Jack Russell Terrier, I may lack height but I am as brave as a lion and I never give up. Robbie isn’t the only man in my life with a hidden disability; my son has autistic spectrum disorder. He manages reasonably well these days, but it hasn’t always been that way and there have been times when it has taken all of my strength and determination to ensure that he had the right support. Apparently I became a bit of a legend among his school friends because on a couple of occasions I had to deal with teachers who failed to take account of his specific needs. Thankfully most of his teachers were excellent.



Robbie’s words meant a lot to me. I am pleased that he values my support, I often feel useless because there is so little that I can do to make things easier for him. Perhaps just listening and trying to understand is more helpful than I realised - and heaven help anyone who makes things harder for him!

Robbie, I may be understanding but I don't miss much - don’t think I haven’t noticed that the quote you chose was suspiciously close to a Groucho Marx quotation!

“Behind every successful man is a woman, behind her is his wife.”
                                                 Groucho Marx

A Railway Rant

Robbie has been really struggling mobility wise recently, in fact at the end of last week he was so bad that he simply couldn't make it to work and he had to work from home. This week it has been a real struggle for him but he has got himself to work. At times like this he has to plan his journey even more carefully than usual, making sure that he travels on a train that gives him more leg room and planning his return journey so that it works well with his bus connections and does not involve an excessive amount of standing around in the the cold. 


Yesterday his train home was running on time, but it was delayed at Rugby to allow a freight train that was running late to go ahead of the passenger train. This caused great inconvenience to the passengers as the train arrived at Northampton 12 minutes late. Meaning that Robbie missed his bus - and at that time in the evening buses are not very frequent. He was forced to walk to the bus station, a long walk when you are in pain, all up hill, and just to make matters worse it was freezing cold and raining heavily. By this time he had missed his connecting bus too, so he had a long cold wait at the bus station. It was passed 9.30pm when he eventually got home, and by then he was in agony.


Unfortunately this issue of a passenger train being delayed at Rugby in favour of a late freight train is a frequent problem for passengers. Robbie expressed his frustration (rather mildly in the circumstances) on facebook. He was met with a barrage of criticism from one person who works for a company which until now I have trusted and respected. Among his various unhelpful comments was a suggestion that Robbie should just put up with it and that he detested passengers claiming compensation because it takes money out of the railways. He also said 'thats the joy of public transport' and 'if you don't like it get a car' I was staggered by his attitude, it makes me wonder how many other people think like that. It certainly makes me wonder if the company he works for shares his lack of respect for passengers! Passengers have paid for a service and they should complain when things go wrong, especially if the same problem happens often. It is the only way to make rail operators understand how much inconvenience it causes and hopefully this in turn will lead to better service. It really isn't about compensation, nothing could compensate for such a miserable end to Robbie's day. If a train is delayed by a tragedy or by problems arising from bad weather that's one thing, and most passengers would be understanding about that, but to deliberately delay a passenger train that was running on time to accommodate a late running freight train has to be wrong. 


I understand that the railway has many customers and freight companies need to make a living too, but whatever the rules say, it is not unreasonable for passengers to expect their trains to be punctual and to expect that consideration will be given to their needs.  

We all live under the same sky, but we don't all have the same horizon.

I rarely mention my work when I write the blog, but today I am going to break my own rules because this trivial incident made someone feel so good and all it took was a little effort. A lady came up to me to ask a question, I could see that she had difficulty in walking and when she asked her question her speech was hard to understand. I guessed that she may have cerebral palsy. I latched on to the couple of words that I understood and repeated them asking if that is what she was looking for. I was rewarded with a huge smile as she realised that I'd understood her without making her repeat the question. I told her that I would show her what she was looking for and I walked with her at her pace to the correct place. Her friend came up to us and the lady almost danced with excitement as she told her that I had understood the first time she spoke.   It was such a small thing and it cost me nothing, but it made a big difference to her - and it made me feel pretty good too.


In my family there are several people with disabilities. I don't think it really gives me any special insight, but the one thing that they all have in common is that they want to be able to do the things that other people do and they want to focus on their ability rather than being defined by their disability. I don't really understand why other people seem to find that so difficult to understand that. My son has a disability (autistic spectrum disorder) which would not be obvious to someone who only met him briefly. Ordinary things like shopping have brought extra challenges for him - and me! There have been a few occasions when people who should have known better have treated him very badly and made things more difficult for him. Usually this could have been avoided completely if people were a little more accepting of difference and less critical of behaviour that they do not understand. My son is amazing and I am really proud of the way he copes with life, but it has taken him a long time to admit to his disability and to accept help when he needs it.


Robbie also has a largely hidden disability, he has spina bifida and it causes more or less constant pain and difficulty in walking. He wants to be seen as just a normal person like everyone else, but he has had to admit that sometimes he needs extra help with certain things. OK, I know that Robbie is a little more unique than most, and the word normal really doesn't suit him, but you know what I mean. Little adjustments like having additional leg room makes travelling much less painful for him. I don't need to list everything, but a lot of small adjustments add up to a big difference to someone's ability to cope with a disability. So when you see a young and apparently able bodied person sitting in a seat offering extra leg room, or using other facilities provided for people with disabilities don't be too quick to judge, their disability may not be obvious. 



We awaken in others the same attitude of mind that we hold towards them.

Feeling Invisible

When I was a very young child I enjoyed stories about a magical little man called Mr Pink-whistle who had all sorts of adventures because he could make himself invisible. I liked to imagine all the mischief that it would be possible to get up to if I was invisible. In books and comics invisibility is a common theme, from the Invisible Woman, the first female superhero created by Marvel (who just happens to be as old as me) to Harry Potter and his cloak of invisibility, the ability to disappear has brought them power, excitement and adventure. People will tell you that in real life it is not possible to become invisible, but it is, the difference is that in real life it is a very lonely and isolating experience.


There is a dutch artist called Desiree Palmen who creates amazing phots of invisible peope. I like the pictures, because they express visually how I feel sometimes, not exactly invisible, but not quite there, perhaps the right term would be overlooked. An infection in my inner ear left me with balance problems, dizziness and slight hearing loss. It has been like that for years and I cope quite well most of the time, but I don't cope well with crowds or noisy environments. I am used to the dizziness but sometimes in crowded places I feel very unsteady and vulnerable, it is almost like a shrinking feeling. It reminds me of Mrs Peperpot a storybook character created by Alf Prøysen who never knows when she is going to shrink.


The other day a friend of mine asked "if I ceased to exist would it matter?". She was not threatening to end it all, she was just feeling invisible and she was posing a very important question. I know quite a lot of 'invisible' people, people who for various reasons struggle to fit in. For some struggling with a disability makes them feel isolated especially when it is a hidden disability that is not understood by others. Mental health problems can be especially isolating and some people who are weighed down by worries, fears or sadness feel that life is going on around them but nobody knows or cares about them.  


We all take life for granted until something puts our future or the future of someone that we love at risk. Then we suddenly review our values and we realise that the things that the world thinks are important don't really matter at all and we learn to value the little things and the things that do not have a price tag such as love, friendship, time, health, warmth, sunshine and freedom. It is true that each life is just a tiny insignificant speck in the sands of time and that when someone dies the world carries on just as before. However the answer to my friend's question is yes, it would matter if she or any of those invisible people ceased to exist. 


It would matter to everyone who loves them and cares  about them. A person who ceased to exist would live on in the memory of every life that they touched, and most people touch many lives in one way or other. Someone who had hurt or wronged them would never be able to ask forgiveness or put things right and they would have to carry that guilt through life. If someone ceased to exist, the good that they may do in the future would not happen. They could not pass on the wisdom that they had gained from their life experiences or prevent others from making the same mistakes, they would not be there as living proof that you can get through the bad stuff. They could not encourage others or set an example for others. Finally if someone ceased to exist the people who love them would be devastated, they would always wonder 'what if ...' For some it may perhaps be one loss too many and the pain and grief may change their lives for ever. 


So why am I writing about this? Partly because April is National Autism Awareness Month. I have close family members with autistic spectrum disorder and I know how confusing and isolating life can be at times. However I also know that he is interesting, clever, loving and very special. Don't miss out, look around you for the invisible people, don't be afraid of difference, please don't pass them by. 

On a Serious Note

Even when I am feeling sad or angry I try to add a note of humour when I write the blog, I don't want it to just be a rant. Writing things down helps me to process the events of the day and often I can see something amusing in relatively ordinary situations, I hope that wry smile is evident in my writing.

Robbie's disability is a subject that I find especially difficult to write about because I know how strongly he feels about it. He wants to be recognised for his ability not his disability, he tries not to mention the intense pain he copes with most of the time and he doesn't like to draw attention to himself when he is finding it especially difficult to walk. He puts on a brave face and when the pain is so bad that he can't ignore it or when his legs don't do as they are told he relies on dark humour (and a few swear words) to help him cope.

I rarely mention his disability in any detail and when I do write about it I try to be fairly light hearted because he would hate it if I wrote a 'poor Robbie' type of blog entry, but that certainly doesn't mean I don't care. He can't hide his pain from me, I am the one who sees him first thing in the morning when can hardly move, I am the one who can tell at a glance that he is in more pain than usual, I know when he can't sleep because he can't get comfortable and I am the one on the receiving end of his frustration when the pain stops him doing the things he wants to do. Of course I care, I care very much, but I am also very proud of the way he copes and the way he always bounces back and just gets on with life.

So why am I writing about this now? Because there is a very fine line between smiling with someone to make light of a difficult situation, and laughing at someone. What may be appropriate banter in an informal family setting where there is absolute trust may be completely inappropriate and hurtful in a work setting. In fact it could even be seen as bullying! I think Robbie copes amazingly well, he is funny sometimes and there are times when he makes me laugh out loud, but I am not laughing at his disability, I am laughing because I love him and it is easier to get through life with smiles than tears.

Please be thoughtful about the problems that others face, don't be too quick to criticise, don't assume you know how they feel and be careful that what is intended as good natured banter does not cause hurt to the recipient. A few words of encouragement can work wonders if someone is having a bad day