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General musing

Profound thinking happening again and I really hope other people stop, look, read and digest what I’m saying and start thinking the same way because this time, I think, what I’m trying to say really matters and really matters to us all.

I might not be saying it well but it comes from the heart.

So, here goes, here are my thoughts.

I have received some very bad news. The sort of news that hits you hard, takes your breath away and that you are uncertain how to deal with. I have learnt that one of my oldest friends died very recently and, despite the fact we had been talking about meeting up for a meal or a show for ages, it was always something we were going to do next week or next month or the next time he was in town but, that time never happened, we never got that chance. We were always too busy.

Then we both got sicker so we, were left with the chatting on the phone and messages on Facebook instead. Not the same as a face to face chat but better than nothing I suppose. At least we could spend hours gossiping, which we did,  but even so….

Then he got even sicker, which I knew about because he phoned me from his hospital bed, but we were still planning on meeting up when he had recovered. Because he was going to recover, wasn’t he? I’m not because my impairment is incurable but his wasn’t was it? But it wasn’t.

Just over a week ago, I received a phone call from his sister to tell me that sadly, he’d died a couple of weeks previously.

It was too late.

Now we’ll never get the chance to meet up properly ever again and I so regret that.

That meal we were going to have, that show we were going to see together, that happy reunion we were going to have will never happen now. We’d had plenty of chances over the years but we’d always left it because we were too busy and there was plenty of time. But busy doing what? Not doing the thing that should have mattered most, being friends and taking time for each other and sharing our lives with the people that matter, that’s for sure.

On the day I got that call I’d actually been checking to see if he’d posted on social media as he hadn’t rung for a couple of days and I was vaguely worried as I did know how sick he’d been. I knew he had a new mobile but I didn’t have the number and I’d thought about ringing the hospital and asking for him but, as I didn’t know which ward he was on it would have been unlikely they would have put me through and, as I’m not family, they probably wouldn’t have told me anything anyway. 

It’s not the first time this has happened to me either but, for some reason, this time seems to be particularly hard. Maybe because, unlike with the other people in my life who have died, he was younger than me – still in his forties whilst I’m in my fifties now. Maybe because we had been chatting on the phone only a couple of days before he died and ending our conversation with the well-worn phrase, ‘Chat soon. Sleep well.’ Maybe because, although we’d both known he was sick, neither of us had realised just how sick he was. Maybe because we’d always thought there could be a time for us to do our thing. Together. But that time never came and that’s so sad.

I didn’t even get the chance to go to his funeral to say my last goodbye because, by the time I got the phone call from his family telling me of his death, it had already happened and I’d missed it. Not that I think that I should have had special treatment, I was, after all, just a friend but it would have been nice to know. Not that I’d have been likely to have been able to make it due to my impairment but it would have been nice to have had the opportunity.

I think I’m going to become a lot more of a ‘live for today’ sort of person. I never want to find I’ve lost my final chance with anyone because I never want to miss out on a last chat with a friend or relative again – it hurts too much and, for the last time, goodbye my friend, sleep well.

Well, that’s interesting.

I’m currently having a fascinating conversation on Twitter with some fellow Whovians discussing the big reveal today for the 13th regeneration of Dr Who.

We’ve got the usual posts and suggestions for a female Doctor or a Black Doctor but I suggested the possibility of a Disabled Doctor.

And I got this instant response ‘Get what you’re saying, but why would the Doctor’s regeneration leave him with a disability? Unless it went wrong, future story perhaps?’.

My hackles were raised – doesn’t this reply indicate the issue in a nutshell – ‘unless it went wrong’.

This implies disability is bad.

How about equality?

If a Black Dr or a Female Dr or an LGBT Dr is not a stretch, why would having a Disabled Dr mean that something went ‘wrong’? Where’s the big issue here? What’s the difference?

A friend has pointed out that the Doctor goes to places throughout the universe and, in that case, for some races/groups of Aliens, couldn’t being regenerated as a human be seen as something going ‘wrong’? If those aliens saw having six legs, two heads or wings and a tail as ‘normal’ then, being regenerated in human  form as completely wrong. If the Doctor regenerated as a Dalek, Cyberman or Sontaran then, for humans, that would be ‘wrong’ but for another Dalek, Cyberman or Sontaran it would be right and nothing to comment upon. Being human, in that instance, would be the abnormality.

I think this is actually yet another example of many people’s inability to deal with the concept of disability as just an alternative form of ‘normal’ . People don’t like to think of disability as anything else apart from being ‘wrong’ when it’s actually their attitude that’s wrong. If I’m out and about with a group of other wheelchair users, we’re our own normal and any upright or walking companions are the ones who are different. A group of hearing impaired people chatting away using BSL are no different from a group of French or German people speaking their own native tongues to one another, they just can’t hear the words or voices, rather, they just see them instead. Visually impaired people reading books with their fingers, in Braille, are not doing it wrong, they are just doing it as an alternative form of right, just as people who are not visually impaired reading print or handwriting is right.  We’re still seeing non-disabled actors ‘cripping up’ for roles in films as disabled characters. We have heard, only this week, of people being unsure about talking to disabled people in case they offend us. We’re seeing paralympic athletes being seen as ‘superhuman’, ‘brave’ and ‘inspirational’. Why? Disabled people are, after all, just people, we’re just people who are different in some way to what is perceived by the majority to be ‘normal’. There is nothing ‘wrong’ with any of us, we’re all just different and it’s time to start seeing ‘different’ as ‘normal’. We need to start seeing people just as people, regardless of their gender, sexuality, colour or disability. Sure, the Doctor recently had a storyline where he was blind for a couple of episodes, but he got ‘better’. Baby steps in the right direction but we’re nowhere near ‘there’ yet.

So, do I think we’ll get a disabled Dr for number 13? Almost certainly not. I still don’t think  people are ready for it. Dr 13 my well be Black, they my well be female but I think we’re still going to be waiting for a disabled Doctor until regeneration 14, 15 or 16. It will happen, I’m convinced that it it will, eventually, happen but probably not today.

But I’ll still be watching, I couldn’t not…

Now, that’s interesting. According to a new report by disability charity ‘Sense’, 25% of respondents to a survey they conducted have said they avoided talking to disabled people because it made them uncomfortable, they didn’t know what to say to us and they were frightened of causing offense. Not only that, but this reluctance seems to be age related with younger people avoiding conversation more than their older counterparts.

Why? Do they think we bite or that they might catch something unspeakable from us? Are they concerned that we can only talk about things are disability related such as wheelchairs and hearing aids and white sticks? Do they expect us to intersperse our conversations with technical references to nasty medical stuff like invasive tests, incurable conditions, pharmaceuticals and distasteful bodily functions?  

Well, I have news for you folks, I, like so many other disabled people, can, and do, talk about so, so much more.

All the time.

In fact, it’s actually hard to shut many of us, like me, up!

I have a similar range of interests to my non-disabled contemporaries. Similar likes and dislikes, similar worries and and fears, similar opinions about similar things, similar funny stories about the exploits of my amazing family. I love eating sushi and all things Italian but dislike curry and anything spicy. I adore watching athletics and gymnastics on TV but get bored stupid by football and rugby. I hate our current Government and all that it stands for, worry about our Nation’s future and all that is just around the corner with Brexit and Trump and North Korea and Global Warming and, wonder what sort of legacy we are leaving for our children to inherit. I can chat about music and films and last night’s terrible TV offerings and Poldark and the latest goings on in Walford. ?I love reading and have so many favourite authors and genres of literature. I like going out for a drink with my friends in the evening and at the weekend and I’m quite good at pub quizzes.

In other words folks, I’m just like you, I just use a wheelchair to get around instead of legs. That’s it.

What’s so scary then and what is it that makes it so? I reckon the problem is routed in unfamiliarity. For too many years disabled people have been brushed to the side and hidden away and non-disabled people have been told that it’s rude to stare. That awkwardness of unfamiliarity begins from a very early age. Small children are hushed and dragged away from us and told not to ask us questions from practically the moment they learn to speak. I once met an obviously exhausted child aged around five or six, on their way home from school, who pointed to my super-duper wheelchair that had headlights and a horn and flashy indicators and asked their parent if they could have one of THOSE for Christmas. Her mother slapped her and pulled her away. Why? I wasn’t offended, I thought it was funny! My friend’s young son, on the other hand, loved it and told his teacher that his Mum’s friend drove her car in the lving room! Hilarious!

What I’d really like to see is far more opportunities for children to meet disabled people from birth onwards and lose the fear. I’d like kids to use their own, natural curiosity and ask us questions without being slapped down and shushed. When my own children were younger, I used to go to their schools to give talks to children in their middle two Primary years about my life and my impairment and how things would be so much better if the world was fully accessible for all, no matter what, and they lapped it up. I listened to their questions and answered them as best I could. Why can’t that happen more often? All children have PHSE lessons where they learn about health and social issues, why can’t other disabled people, like me, be invited to give talks and take the scarey away? Kids could ask questions and find out what makes us tick in a fun and liberating way. Everyone could have some educational fun together. If people were ‘exposed’ to disabled people more, right from the start then maybe they would realise that we are, essentially, just people, the same as they are. If more disabled kids were educated alongside non-disabled kids in mainstream schools and if there were more disabled teachers and youth leaders then maybe the fear would go. It might take a generation to achieve but, with a bit of thought and effort it could happen and then, just maybe, future surveys would find that the awkwardness had gone.

And, I have a tip for all those people, like those questioned by Sense researchers, who are unsure about what they can say to us to avoid awkwardness and offence, why not try ‘Hello’?

    

And, yet again, I am feeling angry and reflective in equal measures thanks to something I’ve just seen on TV.

I’ve just seen an interview with one of the two homeless guys in Manchester who ran to help people who were bleeding and lying, seriously injured and even dying at the Arena and in the street, after the horrible attack in Manchester earlier this week. What an an amazing, selfless, wonderful human being. He fully deserves all the praise and plaudits and gratitude he is receiving, a true hero. And he wasn’t the only one either. I’m sure we’ve all heard of the other gentleman who cradled a dying woman in his arms as well. He was also homeless but that didn’t stop him trying to help where he could and offer comfort where it was needed.

But, what’s got me wondering is what’s actually happened here? What’s changed? Would the people who are setting up Go Fund Me and Just Giving appeals and donating money to these guys have even given them a second glance prior to the attack? Would they, would I, would most of us have offered help or food or money or a kind word or even a smile to them in passing? I would hope so but I don’t know. Sure, some people might have but, sadly, I am afraid the answer for the vast majority is almost certainly not. Most people, had they even noticed them and had they even reacted in any way at all would probably have done little more than tut, pull their children closer, out of the way, kept on walking and thought no more about it. If anything, that’s all.

So there we have it and here’s my big question of the day. What was it about these men that made them so unapproachable beforehand that has now changed? What was it that meant so many people, had they seen them begging outside the Arena last week, would have just shaken their heads and crossed the road? How many would have failed to even acknowledge their existence? Far too many I’m afraid. And what’s changed? Why are we now giving them all the help we can? What has made the difference? Why is the before scenario and the after scenario so different? These guys are still homeless, still down on their luck, still in dire need of help. All that’s changed is that their kindness and humanity has been spotted and highlighted and brought to the world’s attention thanks to the events of Monday night. Nothing else, that’s it.

But surely that kindness and humanity and goodness was there before the bomb. It can’t have just suddenly appeared out of nowhere. All that’s changed is that it just wasn’t recognised due to the  predisposition we seem to have in assuming that the people who are on the street must have done something bad to deserve it.

Why do we think like that? Just because someone is homeless and destitute and begging does not make them bad and deserving of whatever has happened to them. Just because someone has somewhere nice to live and a well-paid job and plenty to eat and lovely holidays does not make them good. The truth is that the homeless guy round the corner is little more than one step away from having a job and their own home and, the guy next door with the house and car and salaried employment is just one step away from being on the streets. No-one knows what is just round the corner for any of us which could change our lives forever, one way or the or the other. ‘There for the Grace of God, go I’ has never been more apposite.

It’s a terrible indictment on our society that it’s taken this awful event for these two homeless heroes to get the help they are now getting. Why didn’t they get that help beforehand? What has actually changed? And, what about all the other homeless people in this country who weren’t there and who weren’t able to do anything to help? Are they going to miss out yet again? I would hope not. I would hope that, whenever we see someone who is down on their luck that we remember Steve and Chris, for those are their names, and try to do something, however little, to show that we care.

I, for one am certainly going to try to make sure I don’t pass by on the other side in future. A simple smile or a quick ‘hello’ won’t hurt me and it might help a homeless person feel like person again, it might even be the very thing that tips the scale and makes a real difference.

What is it about being a disabled person which means that everyone seems to think they have a right to know every grisly detail about your life? What is it about having a wheelchair that make you suddenly become public property?

I have not always been a disabled person, I used to be, what is laughingly called, ‘normal’. That’s how I grew up, but, when I was in my mid twenties, everything changed. I became ill and was diagnosed with an incurable and degenerating condition. Not my fault, not what I wanted, not what I was expecting, not my life plan, but it happened and there was nothing much I could do about it except to deal with it and carry on. Life is, after all, for living, whatever hand you have been dealt and however hard it seems to be. Plans change, situations change, everything can change. Nothing ever happens the way you expect so you just have to adapt and do the best you can with what you have. After all, you only get one go at life, what you have is not a rehersal, so, in my opinion, you have no option but to make the most of it and have fun, whatever happens.

But how much fun can you have when the world’s never-ending contingent of poke-noses come along? Sure, when you are diagnosed with a lifelong condition you can expect to be prodded, probed, questioned and cross examined by the medical profession, that is, after all, part of their job but then there is everyone else. All the other people that want to know everything.

There’s the people who decide if you are going to get all the equipment you need, such a wheelchair or a hoist. What do you need them for? How often are you going to need them? When do you expect to be cured? How heavy are you? We just need to weigh you. And, how tall are you? Are you sure? You look taller. We just need to measure you. And what’s your waist measurement? How wide is your bottom? Do you know how long your thighs are from knee to hip? I’ll just get my tape measure. Non-stop but seemingly justifiable questions. They’re fine – annoying but fine. 

Then there are the people who decide if you are going to receive any financial help from the State. They send you forms which include page after page of questions which need a written response and documentary proof if you have it. How does your impairment affect you on a daily basis? Are you able to get washed and dressed on your own? Can you brush your hair? How about your teeth, do you deal with brushing them yourself? Can you manage your own medication? Do you cook your own meals or does someone else have to come in to help you? Can you eat without help? How about using the toilet or having shower, can you manage to do that? Again, legitimate questions, but it’s still not nice. When you are disabled you really should focus on the things you can still do, not the things you can’t. If you focus on those things, the way all the legitimate questions make you do, then it is just so depressing and soul-destroying. You start to wonder what the point of carrying on is and whether you are just a burden. Not healthy.

But, at least there’s a point, of sorts, for all of those questions, money equipment, treatment, all bearable and understandable. No, the questions I’m talking about, the questions you really don’t need are the questions you get from random passers by. The taxi-drivers who ask “So, what’s wrong with you?”, the busy-bodies who seem to think it’s their right to know. Well, it isn’t.

When you’re waiting at the bus-stop in your wheelchair, you don’t expect to be asked by a small child how you use a toilet. You don’t expect to be quizzed by a teenager about whether you can still have inter-course. You don’t need to be challenged by a pensioner about your finances and told you are a scrounger. And you really don’t need to be interrogated by someone you’ve never met before on why you haven’t killed yourself yet. What are you supposed to say to that one? I’m a bit busy to do it today? Not this week thanks? Maybe next month? 

What is it that makes people think it’s they have the right to ask me personal, intrusive questions if they are not a specialist or a professional? Well, in my opinion, it isn’t. Not everyone has the right to ask me anything. Sure, the medics do and the Welfare Benefits assessor does and the Social Care Provider does and the disability equipment specialists do but that’s it. No-one else need to know anything at all about me at all unless I choose to tell them. I have just the same right to privacy as a non-disabled person. What is it about being disabled that makes me public property? If you’re not in the need-to-know category I would urge you to consider once again what right you have to know intimate things about my impairment, my business, my private life. Before you ask me that burning question, ask yourself if you would like to be asked the same thing and if you really have a right to ask me. Once you’ve done that, if your answer is that you wouldn’t and you don’t, then stop, swallow it and walk away. It’s none of your business and I probably won’t like it either.

Sticky-beaks and poke-noses would you just butt out and leave me alone, I’ve had enough.

I am getting entirely fed up with the number of adverts I am seeing on my TV for lotteries and, in particular, lotteries for charities.

Seemingly endless ways of people wanting to take my money for largely, no return.

RNIB, Poppy Lottery, Oxfam, Cancer Research, they’re all doing it. The list is never-ending.  

Why are these charities spending, what must be thousands, on this sort of TV advertising and why are they pandering to our ‘get rich quick’ society. Why re they trying to take our money for virtually nothing. Celebrities don’t do these ads for free, they charge, the TV companies showing the ads don’t air them for nothing, they are out to make a profit. £1 per week here, £1 per week there, for every pound spent on lotteries, that’s one less pound that could be spent on things more important things such as food, clothes, heating and lighting.

It all mounts up, there must be another way.

And, who are the people who spend money on lotteries, speculating on financial pipe-dreams? Is it the people at the top, the people with money to burn, the bankers, the politicians, the businessmen and women in the gilded skyscrapers of the City, the high rollers, the elite or is it the people at the bottom who just scraping by and who barely have enough for their daily living needs. The celebrities who are promoting these lotteries are unlikely to be buying their weekly ticket, the shareholders of the TV companies showing the ads are not dreaming of a big win, they already get that when their dividends are paid. A study in the USA in the Journal of Gambling Studies in 2012 found that ‘Those in the lowest fifth in terms of socioeconomic status (SES) had the “highest rate of lottery gambling (61%)’. It’s not the rich who are gambling away their money because that’s what it is, gambling, it’s the poor who have little enough disposable income as it is. I know that someone has to win and that some lucky people actually have, but the chances ‘It Could be You’ are vanishingly small.

Unlike the National Lottery, big-charity lottery players don’t even receive a ticket or have a thrill of anticipation, watching the balls being drawn live, checking their numbers off when the draw is made after yet another TV, get rich quick, game show. They don’t even know what their numbers are or which numbers have been drawn each week. Nothing to show for what they have spent. They just have the money taken out of their bank accounts, week in, week out for nothing more than an sophisticated raffle.

It all mounts up, there must be another way.

I know these charities do amazing things for their beneficiaries. I know they need to get their money from somewhere. Having worked for one of them I am fully aware of the great work that is being done, how much it costs and all the people who are being helped but, much of the time, the people paying out and buying the tickets are the very same people who are on the receiving end too. All too often the pound they spent on their ticket is going into the grants for good causes which they are using and benefiting from anyway.

Why not cut out the middlemen who are making and showing the ads and doing something else instead. If the celebrities, TV Companies and big businesses who have so much just gave just a little of it every year to Charities then we wouldn’t need the endless lotteries. And regular donations would be so much better and so much more helpful anyway. The big charities could still get their money and the smaller charities could still get their grants but there would be some certainty to the charity’s income. And the government could help too. Instead of giving tax-breaks to the rich they could give more of our tax money to the services that are currently being propped up by the charities operating lotteries.    

I’m not against people having fun or trying to dictate how people send their money but I do find the non-stop ‘it’s only a pound’ mantra more than a little cynical. Paying fifty pence on the raffle or the tombola at the church fete, school fair or country show, where players stand a reasonable chance of winning a box of chocolates or a bottle of bubbly is one thing but the big, national charity lotteries where your chance of winning anything meaningful are something else entirely.

It all mounts up, there must be another way.

Robin Hood robbed the rich to give to the poor but we appear to be robbing the poor to help the poor down the road whilst the rich sit in their ivory towers raking in the proceeds.

There has to be another way.

I’ve just read yet another outraged post about women who breastfeed in public. And yet again, the main thrust of the argument being spouted against it is that it’s disgusting and should be banned, especially when it is done in public, particularly in a cafe of restaurant.

Why?

What’s wrong with it? I’ve seen some truly disgusting things in restaurants such as people who lick their knives, people who chew with their mouth open and people who talk with their mouth full and spray half chewed food and spittle everywhere. Can we ban these people too please?

What does everyone who goes to cafe do when they get there? Have a drink! Eat! Why should a baby be any different? We all need to have regular meals, why should a baby be any different. And the idea that a breastfeeding woman should go to the toilet and feed their baby there – really? Would the people who say that like to eat their dinner sitting on the toilet? No? I thought not, no-one would. If you bottle-fed your baby you have to make sure things are sterilised and clean so you don’t introduce harmful bacteria into the baby’s system yet breastfeeding Mums are often being asked to go to the toilet and fed their child there. Disgusting. What is wrong with people in this country. If the sight of a woman doing something perfectly natural like breastfeeding offends you and disgusts you so much there try this for an idea – look the other way.

I think another report I saw this morning gets right to the nub of the issue. This second report was about a politician in the USA who said that if a woman got out her breasts in public to feed her child then he has the right to grope her. What we have here is a man, and yes, the politician in question was a man, seeing a woman’s breasts as his own personal play thing. Well they aren’t. They have a purpose which is not to entertain and titillate. They have developed and evolved over millennia as a way to nourish the next generation. Breasts are not a sex toy.

And then there was a third report I saw this evening, on the same subject, which angered and upset me more than the other two reports combined.

This report was about a woman who has been sentenced to seven years imprisonment for breastfeeding in public. Seven years. How warped is that? A woman who followed her natural instinct to nourish and nurture her child is being incarcerated for doing so. Granted, there is probably a lot more to the story than has been reported in the press, it may even be a spoof but, even so, if it is true, is imprisonment really a proportionate response? Just the thought that such a story could be given any credance at all is wrong, just the idea that such a story could be written at all says something about the nation where it reportedly happened. Let’s not forget, we’re talking about a country where a young man who sexually abused a young woman, physically assaulted her and left her, battered, bruised and bloodied, behind  rubbish bin in an alley, served just three months of a six month sentence before being released and yet, allegedly, a woman whose crime was to breastfeds her child in public supposedly gets seven years? How can this ever be seen as right. Surely, it can’t. There has to be something seriously wrong with a legal system which could, at least, allow this to happen or which even sees the idea of it happening as right.

The issue of breastfeeding, and breastfeeding in public, is something we all really need to examine again and have a proper, reasoned and rational debate about. There must be a solution that can satisfy everyone. I have to say that one idea I have seen was in the cafe of a well-known Swedish furniture store. There was a special area set aside that had comfy seats, bean bags, tables, armchairs and screens for the use of those people who wanted to breastfeed or bottle feed their child. In my opinion, what a good idea. Granted, not all cafes and restaurants are big enough to have a whole section set aside for breastfeeding Mums but surely, in most places, it must be possible to have a table or tables in a secluded corner where breast-feeding can take place in peace and quiet without anyone complaining. People who don’t like to see babies being fed would know not to sit there and breastfeeding Mums would not feel excluded and isolated. Not only that, but small children, whose presence often annoys other, adult diners, would be able to play and make a mess whilst their parents eat, without upseing anyone else.

We all really need to have a rational and reasonable discussion, find a solution which suits everyone and not stigmatise women doing something perfectly natural as disgusting and wrong. Women who breastfeed are not exposing themselves or flaunting their sexuality, they are simply nourishing their child. That’s all. Nothing more.

And, if you really are someone who really doesn’t like it, I have a simple solution for you – don’t look.