Yesterday, there was an article in one of the more respected daily newspapers which stated that a survey in America had identified six medical conditions which had been rated, by hospitalised patients, as worse than death.

Really?

Worse than death?

Had any of the respondents to the survey actually experienced any of these conditions long term so they could make an informed decision or were they just guessing? Almost certainly not. I think that most people were, in fact, guessing.

I took a look at the list and, of the six conditions listed, I have experienced four of them and have lived with two on a daily basis for several years. Let me tell you guys, I reckon death would be far worse. Sure, these conditions are all things that can make life harder, a lot harder, but death would definitely be worse.

Death is not something you can learn to live with.

Death is not something you can get better from.

With death, you don’t get another try.

Death is the very end.

Finito.

I think the major problem we have here is fear. Fear of the unknown. For a start, all the people who took part in the survey were hospital in-patients. They were all people who were probably scared and worried and ill. According to the article, they were people with long-term conditions such as malignant cancer and heart failure. These were people who were scared and frightened by what was already happening to them, then they were given a list of other conditions and asked if a diagnosis with any of these would tip them over the edge. These people were sick and at a cross-roads, they were presented with a list of nasties and asked if they had a choice between them and death which would they chose.

Well, that’s not fair.

In those circumstances it is hardly surprising that death won. These people would have heard of all of these conditions, and may even know others who have experienced them, but they would have already been scared so asking a question like this, at that time, was wrong. Sure, the conditions listed are horrible and, for someone with no prior experience of a long-term, life changing medical condition, scarey, but, if these conditions are well managed and people receive proper treatment and care, there is not nearly as much to be scared of as you might think. Having to deal with any of the conditions listed can be difficult and, in some instances, unpleasant but, in my opinion, death would be worse. Furthermore, as this survey was conducted in the USA where people don’t have access to free, NHS care and participants would have to pay for treatment and care, this could have coloured their responses. Taking that into account however, of the six listed there is only one, ‘being confused all the time’ which actually would scare me. Even then, I’m still not sure if I would chose death as the way out. The others are, as far as I am concerned, all copable with. In fact, I have friends and acquaintances who do cope with them on a daily basis and they all have rounded and fulfilling lives. They are not sitting back longing for the Grim Reaper to call, they are out having fun and enjoying themselves.

I think this article is another attempt at promoting the thorny issue of Assisted Suicide. Running a story about what happens in another country is not right unless it emphasises the fact that it is another country and that things are different there. I’m not saying that people don’t have a right to choose, they do, but they need to know death is not the only choice available and what the situation is here. Sure, people should be able to go for the death option if that’s what they really want but they need to be given full, accurate information about other options available to them so they can make an informed choice and that doesn’t always happen and it should.

I hope that the newspaper in question runs another story about Britain in what happens here but I’m not expecting miracles. Balanced reporting would be nice for once but it probably won’t happen.

It’s horrible.

Yesterday saw a complete and utter tragedy in Japan when a man decided to attack and slaughter nineteen severely disabled people in a care facility outside Tokyo for the despicable crime of – being disabled. That was it, they were disabled. A cowardly attack by what sounds like a disgruntled employee, perpetrated against people who were unable to defend themselves against his blows and slashes and murderous assault purely because, to his eyes, they were not worthy of life. He attacked and mutilated and killed at least nineteen people in a frenzied knife attack before going to a police station to hand himself in, allegedly stating as he did so: “It is better that disabled people disappear.”

Why?

What was it about the disabled people living in this facility that he felt entitled him to snuff them out? Why did he decide that these people have no right to exist? What had these people done that was so terrible? Was it because they had been born in a less than ‘perfect’ body? Could it have been because he deemed them to be unable to function ‘normally’ in society? What gave him the right to play judge and jury and make that decision. We will probably never know.

But that’s not all, there’s more.

Earlier this year he wrote a letter to the Speaker of the lower house of Japan’s parliament in which he said that he felt it would be better if all severely disabled people were, with the agreement of their families,  euthanised if it was proven to be difficult for that person “to carry out household and social activities”. There was no description given of what those activities might be or what differentiated a disabled person from a severely disabled person, just that these people, whoever they might be, were not worthy of life and should, therefore, die. He even volunteered to carry out the killings himself and detailed how he would accomplish this atrocity if given the opportunity.

As far as I am concerned this is just the tip of a hate filled iceberg. Society is in meltdown. Disabled people are being hurt, disabled people are being abused, disabled people are dying because of it. Disabled people are  being targeted for no other reason than for just being who they are. This fear and hatred is prevalent from the lowest to the highest echelons of society and it’s getting worse. Only this week there was a report in the press about a middle-aged businessman who, apparently, decided, that bullying a disabled person because he himself had been made to queue to use a toilet was all right. Earlier this year, Republican Presidential candidate Donald Trump felt that it was acceptable to mock a disabled reporter because of their impairment without any obvious repercussions for his actions. In November 2015 it was reported that incidents of disability hate crime in the UK had increased by forty-one percent over the previous year. Name calling, harassment, physical and mental assault for no other reason than a person’s medical condition. Well, in my opinion this is not right and cannot be allowed to continue. What will it take for the hatred to stop? What has happened to make society so against people who are not the same, people who are different in some way. People who are different because of an illness, injury or accident of birth. Something that is out of the control of the person that is being abused.

We need to show that we have had enough and that all this unwarranted hostility and intolerance has to stop. People should learn to respect diversity and value their fellow men and women for what and who they are, regardless of their abilities or disabilities. We all have a contribution we can make, no matter how large or how small, how monumental or seemingly insignificant it may be.

We must make sure we all put our collective feet down firmly and just say ‘NO!’  

Yesterday, yet another library in my Borough, the London Borough of Lambeth, was closed. Parents and toddlers coming for their weekly story-telling afternoon were turned away, doors were padlocked to keep both staff and customers out, shelves were cleared and removal vans were sent in to remove both furniture and assets. Today I am seeing pictures of packing crates in empty rooms and uniformed security guards patrolling the premises and hearing tragic tales of other local libraries nationwide being striped of their staff, their stock and their identity.

Why?

What is it about Libraries, their history, their function, their unique position in society, their unquestionable importance, that my local Council, and indeed, other Councils don’t seem to understand? Libraries were set up to be free, public repositories of knowledge not, as Lambeth seems to think, a simple bookshelf in a church hall, surgery or gym which is what they are proposing that we should have.  This wanton destruction of our precious facilities, our heritage, our children and grandchildren’s futures has to stop now, before it’s too late and the situation cannot be reversed.

The heart is being ripped out of our communities and it can’t be allowed to continue.

According to figures I have seen in the last couple of days regarding council spending, I understand that during the last financial year over £13million of our Council Tax in my area was spent on ‘Corporate Office Accommodation’, whatever that might be, whilst only a miserly £57,000 was invested in library provision Boroughwide. £57,000 invested in one of the greatest information resources we have in the area. £57,000 invested in our young people’s future. In a Borough with a total population of around 316,000 people that amounts to just £5.58 for each man, woman and child. Not even the price of your average cut-price paperback.

Well, forgive me, but that just doesn’t seem right.

I pay my taxes for services and facilities that will benefit everyone not just a select coterie at the top. Services that will benefit, not just me, but my children, my future grandchildren, my neighbours, my neighbours’ children and grandchildren and my entire community. I don’t pay my taxes for unused empty buildings and city centre office blocks. I want value for the many for my money, not perks for the few but that’s not what I’m getting.

And I can look at what’s happening from a different angle, through different eyes. I am not just a local resident and taxpayer, I am also a trained librarian so I can look at what is happening as a qualified professional, not just as a vociferous and angry service user. I have worked in public libraries, school libraries, university libraries and specialist libraries within national and multinational businesses and corporations.

When I studied for my BA(Hons) in Librarianship in the 1980s, I learnt about the beauty of both language and literature, the wonder of local and national history, the importance of all knowledge and I was taught everything I needed to know about high quality information provision for all. I learnt about storing, guarding, protecting and sharing information and helping others to access that information whenever they needed to. I was not taught how to pack it away and put it into storage, hidden from sight, which is what seems to be happening, not just in Lambeth, but throughout the country.

I’m pretty sure we were taught that what local communities wanted and needed and cherished was unfettered access to books and computers and information and space to study with properly qualified, fully committed, professional library staff who knew the local area and what other facilities were available for people to use should they want to. We were not taught to value corporate offices we were unlikely to ever use or see. We were trained to become Library staff who were prepared to invest time and effort in listening to our customer’s questions, finding the answers to those questions and showing people how to do their own research if they wanted to know more. I’m pretty certain we weren’t taught that what local communities wanted most for their money were posh offices with comfy chairs and shiny desks for transient local councillors and overpaid council executives.

How much longer will both Lambeth Council and other Councils continue to forget that local libraries are a valuable resource for everyone, maybe even the most valuable of all resources for so many people within the area?

Residents have been investing in their libraries for decades so please, don’t close them and take them from us. We have needed them in the past, we still need them now and we will continue to need them long into the future.

Don’t take away one of the greatest assets we all have. There must be other, less painful ways to save money. Leave us our libraries and try something else.

What an eventful political week.

Who could have predicted the momentous turn of events we have just witnessed only one, short month ago. Not me, for one. Saying goodbye to David Cameron and his team and hello to Theresa May and her’s is going to change so many things, long-term, for us all.

But, what do I as a disabled person, want to see delivered by the new regime?

Well, for a kick off I want to see an end to all Welfare Benefits sanctions, in particular sanctions which mean that disabled people are left without sufficient money to pay for food and medication and rent and energy costs and transport costs. I would like to see proper Welfare Benefits for disabled people where we didn’t have to continually justify our existence or prove how ill we are at every turn. Applying for Disability Benefits and attending never-ending face-to-face assessments or tribunals is soul-destroying, mentally traumatic and largely unnecessary. I want to see an end to people being punished for the crime of being too sick to work and being awarded benefit levels that allow us to actually live not just subsist. Just because we are either born or become too ill to earn our own livings does not mean we should always be put at the bottom of the heap or made to feel as if we are a burden on our families and society through no fault of our own.

I would like to see physically disabled people being able to access proper equipment based on what we want not what the government deem us as needing. The cheapest option is not always the best option in the long term. Giving us the bare minimum could be counterproductive. Spending a bit more to help us now may well mean less needs to be spent in the long term because our medical conditions might not deteriorate as fast, if at all because we are not having to struggle all the time for everything. There needs to be better provision of proper Mental health care and access to inpatient and outpatient treatment for as long as it needed, not a one size fits all system. Everyone is different and this needs to be recognised. There should also be mandatory mental health first aid training for anyone working with young or vulnerable people and for both physically and mentally disabled people, proper support for the NHS. I would like to see more funding made available for medical research which may lead to a better understanding of disabling conditions, better treatments and possible cures.

Another important consideration for many disabled people is care. I would like to see more money put into support for family carers, support for young carers. There should be mandatory respite care, for all disabled people of at least two weeks, annually allowing both disabled people and their carers a break where they can relax, safe in the knowledge that needs will be met. I would like to see this combined with increased level of social care. I would like to see family carers paid a living wage rather than just receiving the paucity which is Carer’s Allowance. I would like to see proper recognition of the value of family carers and how much money they save the nation. I would also like to see a proper rate of pay for all social carers. Without them and without family carers many more disabled people would need residential care or hospitalisation at a far greater cost to Social Services and NHS budgets.

And then there is transport and transportation costs. I would like to see a version of Taxicard available nationwide. I would like to see more investment in a fully accessible transport network. I would like to see much wider provision of wheelchair accessible transport such as Dial-a-Ride services and wheelchair accessible mini-cabs. Blue badges need to be universal for hospital carparks. There should be free parking or a refund of reasonable travel costs for relatives of people who are long-term in patients in hospitals.

These are only my initial thoughts and things that affect me personally the most but there are so many other things I feel that our new Prime Minister and her Cabinet should tackle that could benefit the lives of disabled and older people nationwide. Education, Transport, Access to Justice, Employment, the list is never ending.

Am I hopeful that we will see any of this?

Frankly, no.

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.

Who was it that decided that hatred and bitterness and back-stabbing and nastiness were ever OK?

Well, as far as I am concerned, they aren’t and I’ve had enough.

Since Friday last week both Social and mainstream media has been full of nothing but hatred and doom and gloom and narrow-mindedness and I can’t stand it any longer. I know that there are people who are really happy about the Referendum result, I know that there are people who are really unhappy about it but all this gloating and loathing and racism and bigotry is all wrong and very unhelpful. Just today I have seen videos of a racist rant from a young person being made towards an older black guy on a tram in Manchester and reports of a firebombing attack on an Asian wholesalers which destroyed a family’s livelihood in Walsall. Thankfully, in neither incident was anyone killed or seriously injured but this is not something that should ever be considered to be acceptable. And then there are all the men and women who are being told to pack up and go home. Forgive me but these people are home. They were born here, in many cases, their parents were born here, their children were born here, their jobs are here, their lives have been spent almost in their entirety in this country. What are they supposed to do, where are they supposed to go? This is their home, this is where they belong and they should not be harassed or hounded or intimidated. They should be able to continue with their lives in peace and security. Then there are the other people, the people that voted on Friday, one way or the other. All I am reading and hearing about at the moment are families that are fighting amongst themselves over the dinner table, loving relationships that are falling apart, life-long friendships that are coming to a bitter end. I, myself, have had to ‘unfriend’ two people on Facebook that I thought were people that I liked and agree with but whose views have turned out to be at polar opposites from my own views. We might not live in a lovey-dovey, fluffy pink world but violence and intolerance and inhumanity has never been the the answer to anything.   

I’m not going to say how I actually voted myself, those people who know me personally will be able to have a very good guess, but it doesn’t matter and it’s not important. Personal viewpoints are just that, personal, that’s all. What is important is what we, as a country, as a nation are going to do next. People and politicians are bickering, political parties on both sides of the political equation are imploding, votes of no-confidence in our leaders are being proposed, voted on and passed, resignations and sackings appear to be two a-penny. Everyone is trying to second-guess everyone else but no-one is coming up with a decent plan of action and it’s not helpful. It needs to stop and it needs to stop now. Hand-wringing and recriminations will get us absolutely no-where. All it will do will be to make us seem to be weak and indecisive and that will be of no help whatsoever.

We, the electorate, need to know what happens next. I, for one, have a whole load of questions and I need answers. Will the prices in the shops go up? Will my rent increase? Will my daughter and her partner be able to find and afford a home of their own? Will my son be able to get a job and follow his chosen career path? Will there still be doctors and nurses available to treat me next time I have to go to a health centre or a hospital? Will I still be able to find personal assistants willing to come and attend to my home-care needs? Will my rights be protected? Then, as a nation we need to know, will our children’s and young people’s education be compromised? Will our jobs, and the jobs of our friend’s and relative’s, be secure. We need to stop and take stock. We need our leaders to talk to us and tell us. This is not a time for discord and disharmony, this is a time for us all to stand together, as one, and say “This is what we are going to do” and then, actually, do it. The hatred and bitterness and antagonism towards our neighbours needs to stop and it needs to stop now before it gets out of hand. What will it take before we realise that things have already gone too far and pull back from the abyss before we fall? We need to look at what we want for our future and decide how we’re going to get there. We need leaders who can actually lead, not men and women who seem to be more concerned about themselves and their own careers than the people who voted for them. We need to know what is going to happen next and we need to know it now.  

Follow

Get every new post delivered to your Inbox.

Join 425 other followers