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General musing

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.

A disabled friend of mine posted a very thought provoking comment in one of my many social groups on Facebook yesterday. Something that has got me thinking big-time.

She asked, what sounds on first reading, to be a pretty straightforward question but which is, in reality, a question that has, for many of us who live our lives with freedom-limiting impairments and illnesses, a pretty complicated answer.

What she wants to know is whether she’s the only disabled person who feels really jealous when she hears about non-disabled people getting to do things she can’t do and go places that she can’t go due to her impairment or if more if us feel that way too.

Well, as far as I am concerned, the answer is a resounding, YES!

Yes, I do feel jealous and resentful, really jealous and resentful, all the time.

Don’t get me wrong, most of the time I’m pretty contented and happy with my life as it is but, just sometimes, I’d really like to spice it up a bit and do some of the things I used to love doing before I got sick. Not so long ago I had a very full and eventful life despite my MS but now, thanks to my worsening condition and to my infected pressure sores, my world has shrunk enormously in hte past two years and I am restricted to a small, single bed sized space in my house, the majority of the time. Sure, I do get get up to go out occasionally, but most of my life is now spent restricted to the four walls of my living room with only my computer, my TV, my phone, my books, my family, my carers, District nurses and doctors and some long-suffering friends to relieve the boredom.  

It used to be so different. I had a good job doing something I loved, earnt a very decent salary rather than having to rely on Welfare Benefits for every penny, went out when I wanted to, spent time with my friends and relatives because I felt like it, got to plan for my holidays and my free time, visited fascinating and interesting places locally and further afield, was a lady who lunched at least once a week, did what I wanted to do whenever I wanted to do it and now, I can’t.

And it sucks.

One of my children has just had a week away, going to a friend’s wedding and then having a lovely holiday exploring Scotland and having fun, the other is planning for her next trip away and visiting friends for the weekend. In complete contrast I get to do nothing more interesting than change channel on the TV and hope there’s a film on I haven’t seen before. My children get to go out and about, go shopping, visit museums and art galleries and the theatre and go to the pictures, go to the pub, do fun stuff and I can’t. I get to experience it all second-hand but, in reality, I’m stuck here doing nothing most of the time and it’s not fair. Don’t get me wrong, I have some really lovely friends who come round to visit, bearing yummy treats to share or who phone me for a long gossip about whatever they, and their families, have been doing but it’s not the same thing. In a lot of ways I don’t feel like I am taking part in real life at all, I feel like I’m merely observing it from the sidelines. I acknowledge that is probably not the case but that’s what it feels like most of the time.

Maybe I would feel differently if I had been born with my impairment and had never experienced a non-disabled lifestyle but, as things stand I don’t know. I can really speak only from my own viewpoint and so, yes, I am very jealous and very envious of all the things other people can do that I am unable to do any longer. I would give anything to be able to feel sand between my toes once more. I would pay whatever I could to be able to walk alone through the woods with my dog, listening to the birds above me and watching butterflies and bees flitting from flower to flower. To be able to go with my friends to shows and gigs without having to consider accessibility or what time I had to be home for my carers to put me back in bed again would be priceless but, unless a miraculous cure is found for me tomorrow it’s not going to happen any time soon, if ever again. I so miss my old life and there are times when I want it back more than anything else but that’s not likely to happen.

I’m pretty sure I’m stuck with what I’ve got now for the rest of my life so I will just have to suck it up and make the best of it. It’s time for others to have fun now and I will just look on and share what they are doing in my secret dream world. That is something I will always have, whatever happens, it’s special and it’s all mine.

What has happened to this country? What is going on? We really do seem to be becoming a nation full of some very nasty people and I don’t like it. All I am seeing at the moment is story after story, report after report, news item after news item, on social and in mainstream media, of racist and xenophobic attacks and mind-boggling hatred towards our fellow man and woman. It’s horrible. Even though it’s now been a week since the Referendum, since we voted to leave the European Union, it’s going on and on and on. The hatred and racism is not abating in any way that I can see, if anything, it’s getting worse. According to newspapers and the news bulletins I’ve seen, read and heard just today, racist hate-crime has increased fivefold in the last week. A truly terrifying statistic and not a Britain I want any part of. People are being abused just because of where they were born, because of the colour of their skin and it has to stop.

What is going on?

People are being abused, insulted and attacked for no other reason than the fact they were not born in this country. Got a ‘funny’ name? Go somewhere else. Got an accent? Get out. Born somewhere else? The exit’s that way. Got a different skin colour? No room, we’re full.

Why?

Anyone with any knowledge or understanding of our country’s history knows that Britain is, and always has been, a medley of people and traditions from other countries, other nations, other cultures. A wonderful, amazing, fascinating meld of people from all over the world. People from many races living and working together, over the years, to make our country what it is. People absorbing other cultures and traditions, whilst adding a ‘British’ spin to everything. People teaching each other about life elsewhere and learning from one another for centuries. That’s what has made us the people and the country we are today.

But things are changing and, in my opinion, they are not changing for the better. As a nation we are becoming more and more insular and intolerant of others and it has to stop. All this bitterness and hatred is wrong and cannot go on. Not without harming the health of our country it can’t, anyway. Disrespecting, attacking and abusing others has to end before it’s too late. I  believe that my parents got it right and I believe that we should all try to think the same way. It makes sense to me anyway. They were both children in during the Second World War and the things they saw and heard then taught them something invaluable. Thinking first and then treating other people the way we would like to be treated ourselves needs to become our watchword, the way we all live our lives. Continuing to hate is wrong and can’t go on.

When I was a child, back in the 1960s and 70s, my wonderful parents brought me up with one main tenet for my life which they encouraged me to follow. It’s a maxim that has served me well for more than half a century now and it’s something I have tried to instill into my own children’s upbringing. It’s something, I believe, we would all do well to remember and try to adhere to, especially now. If I have learnt nothing else, if there’s nothing else I could teach my grandchildren, when I am blessed with some, if I take nothing else forward into the rest of my life, from the many things my parents taught me, practically from the day I was born then it’s this,

treat other people they way you would like to be treated yourself.

If you don’t believe you would like it done to you, by someone else, then don’t do it to other people.

Stop, think, reconsider then walk away. That is what we need to remember every day in everything we do and that is what we seem to have forgotten at the moment.

Fed up.

Flippin’ fed up.

Flippin’ fed up and not very happy about it.

My life used to be fun and interesting and exciting and wonderful but now it is suddenly so dull and boring and I hate it.

So what, I hear you ask, has changed? What’s happened? My MS, that’s what happened. Thanks to a massive pressure sore that got infected and put me in hospital on intravenous drugs eighteen months ago I am now restricted to spending most of my time in bed, in my living room, instead of going out, doing stuff and having a life so the pressure sore doesn’t come back. I get to get up and go out occasionally but not every day like I used to. Just a few short hours of freedom every month and then back to my padded prison of pillows, sheets and duvet. Not so bad when it’s cold and miserable outside in the winter but oh so dull in the summer when it’s sunny and hot and I can hear the world happening outside, without me. I used to work full-time, had an active social life, got to go places and meet up with friends and do stuff all the time and have a real life and now I can’t. I used to moan about the weather, the traffic, my job, the crowded shops and streets, public transport delays, the fact there was never anything on at the cinema that I wanted to see. But no longer. My world has shrunk in size to become little more than a rectangular box with a small, hexagonal bump on one side. My living room, with a bay window where my bed is situated overlooking the outside world, and a door to the rest of the house that I only get to go through rarely. I get to interact with real life through my keyboard, through my television, through social media, through occasional phone conversations with friends and family and visits from my carers every morning and evening and that’s it.

Yesterday I had such a lovely day. I got up, was helped to dress, hoisted out of my bed and put into my wheelchair and then I went out into the world with my older child. Not that we did anything earth-shattering or exceptional, we just went to the lovely Sunday farmers’ market near our home and wandered around. We looked at various stalls selling cakes and fruit and veg and meat and ethnic fast food, sampled lots of different cheeses and bought a few, picked over bits of costume jewellry and books and pictures and items in boxes at the brick-a-brack stalls, ummed and ahhed over some small antiques and old LPs and black and white postcards from a bygone era and then went for a coffee and a snack at a local cafe where we got to meet up with my younger daughter. I interacted with strangers, got to meet one of my child’s friends who happened to be there too, felt the sun on my face, felt the breeze in my hair and got involved, just for once, with so-called normal life. Nothing amazing but, for me, very special and not ‘normal’ at all. I was getting to do something that, not so long ago, I got to do most weeks and something that the majority of people get to do whenever they feel like it. And, I didn’t realise quite how special it was until I didn’t get to do it any more. Well, not every week anyway.

Why is it that none of us seem to understand what we’ve got until we don’t have it any more? I know that it’s up to me to make something out of my new life but, if I could do it all again, I would smile at passers-by, chatter with some of the others waiting at the bus-stop, take more pride in my environment and just relish, enjoy and be thankful for my life and my environment. If I could go back and do it all again I would make sure I paid far more attention to the seemingly small things that make life so joyous and wonderful. And I would love it and be thankful for it far more than I ever was before.

Life is for living and enjoying and relishing so go out and live it and enjoy it and relish it just in case it changes when you least expect it and you find yourself fed up and watching others having fun when you can’t.