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I am angry. I am very angry. I need to get confirmation of what I have just been told but, if it really is the case, then I am very angry indeed.

To cut a long story short, last year, my local authority, Lambeth, decided in it’s infinite wisdom, that it would close my local library, the Carnegie, in Herne Hill, SE London, in order to convert the basement into a gym and have a much reduced library on the ground floor, with no professional library staff available or, at least, only available for a short period every week. On February 8th the Council, in it’s infinite wisdom, approved the plans, which will now be implemented.

As a wheelchair user, access was never amazing but, by dint of ringing a bell at the bottom of the steps to the main entrance, at least a member of the library staff would come out, help you through a side entrance to a lift in the basement and up to the main library area. Not ideal but at it worked. I have just asked what will happen when the basement is converted into a gym. Would we still be able to access the lift. I have been told that wheelchair access will, in future, be via a ‘circuitous stairway route’!

Well friends, what part of ‘stairway’ and ‘wheelchair’ won’t work do we think?

Could it be that, as I am not a dalek with an amazing ability to levitate, I, and other disabled and older people with mobility issues, will NOT BE ABLE TO GET IN AT ALL?

Discrimination anyone?

Of course, I am fully aware of the fact that there are other options available to me, such as a home library service where someone brings my choice of books to me but, and in my opinion, its not the same thing. Whilst, of course, a home delivery scheme has it’s merits for a lot of people, it’s not, in my opinion, the same thing at all.

Half of the fun of going to the library is having the ability to browse the shelves and find new books and authors you never knew about. There is nothing like pulling a book off the shelf, purely because it has an engaging title, reading the blurb on the back and the author’s biog on one of the inner flaps and thinking ‘This looks interesting, maybe I’ll give it a try.’ I really cannot count the number of times, over the years, that this has happened to me. Many of those books now rank amongst my favourite reads of all time and without the ability to browse the library shelves I might never have found them.  

Then there’s another important issue that also needs thinking about, apart from he issue of access for disabled people.

There are already three gyms, with swimming pools, in the immediate area as well as a large park over the road and another, even larger park, fifteen minutes walk away in the centre of Herne Hill itself. Why, exactly, do we need another gym? Has anyone ever given any of us an answer to that? Not only that but, as far as I am aware, Lambeth has not done any form of impact assessment for the people living in the streets surrounding the library building. The library is in a residential area, with two busy primary schools in the immediate vicinity, and the majority of the streets surrounding the building are Controlled Parking Zones with daytime parking restrictions because of those schools. In the evenings these same streets are where residents park their cars after work, outside their own homes. There is no space for gym users to use. There are no car parks nearby and no room for one to be built. So where would Lambeth Council suggest that gym users should park their cars? Any ideas?

And then there is the noise issue. As I have already said, the library building, where the gym will be, is in a residential area where families with young children and older people live. It is a quiet area. The people who live nearby are not going to welcome any disturbance and disruption in the evening caused by the noise made by gym users leaving the building, getting into their cars and driving away after their fitness sessions.   

It is very clear that this plan has still not been properly thought through and that, yet again, Lambeth have jumped in, feet first, without considering the cost and the consequences for local residents.

Let me reiterate. We do not need another gym. You can keep it. We do not need gym users causing noise and disruption. You can keep them too. What we need is our library. We want to keep that. A gym will only make things worse for Council Tax payers and residents in the area. Please Lambeth Council, give us back our much loved and much used library and stop trying to make a fast buck on the side. If you ignore us and our wishes, let me tell you, when the next Council elections come round, we will not forget and we will not forgive.   

Ok, Hollywood centred rant coming up….

There is a new film around that has really rattled my cage and made me angry.

‘Me Before You’.

This block-buster film is due out next month, release date in the UK 3rd June.

I have two major problems with it.

Firstly, the disabled male lead character is being played by a non-disabled actor. Just why? AREN’T THERE ANY DISABLED ACTORS IN THE WORLD? Why a non-disabled actor? It’s not right. Secondly, and in my opinion, more importantly, it seems to promote the idea that disabled people are better off dead. Just NO. As a severely disabled woman I don’t believe this is true. Being disabled is NOT a death sentence, it’s perfectly possible, to live a good and productive life and be disabled at the same time.

So. Let’s start by looking at the issue of non-disabled actors playing roles depicting disabled characters on screen, TV or on stage. What is the issue with casting one of the amazing disabled performers there are in these roles? Are film directors and TV producers trying to say there aren’t any or that they aren’t good enough? If that’s the case, they’re wrong. There are plenty of amazingly talented disabled performers just waiting for the chance to shine. Or could it be that these same directors and producers believe that using real disabled people might make the viewing public uncomfortable? If that’s the case, why should it? Disabled people are part of every-day society in real-life, why not in the fictitious worlds we all pay to join when we watch a film? We are seeing more and more racially appropriate actors playing diverse ethnic characters, why not let us have a fully representative cast when making something that includes a disabled person in the plot, especially when that character is one of the leads.

Then there is the subject matter of the film. Implying that disability is a tragedy and that disabled people should consider killing themselves rather than continuing to be a burden on their families and on society is so wrong. Disabled people have as much right to live their lives to the full as everyone else. Where do we draw the line? How are we supposed to decide who has a right to life and who doesn’t. Are we saying that some disabilities are worse than others? Ranking impairment by effect on the individual disabled person or on society as a whole. Who gets to make that decision. Who gets to play judge and jury? Does anyone have that right? If we legalise euthanasia, in my opinion, we’ll be starting down a slippery slope. Some disabled people may feel they have no option but to take their own lives because of the ‘burden’ they consider themselves to be on their families or even those who are actually pressurised into it by their families. Others may feel they just can’t go on. Many disabled people experience considerable pain and discomfort due to their impairments and that is the reason they cite for feeling they would be better off dead. Rather than looking at ways to put an end to that suffering through death, why can’t we put more money, time and effort into improving the provision of palliative care. Decent pain relief and more effective treatments should be the way to go, not endless discussions on our right to life at all.  

Then there is the issue of how disability affects both the individual themselves and the people in the wider community are impacted by having disabled people in their lives. If I hadn’t developed MS at 24 there are so many people I would never have met, so many friends I would never have made, so many things I would never have done, I would never have started writing – my writing has happened exclusively because I am disabled. I would never have done my Post Grad-Law qualification, I would have stopped after my first degree and stayed in public libraries for my entire career. I would never have worked for the organisations and employers that have employed me. I would have missed so much. Contrary to popular opinion, disability has not ruined my life, it has made it. Without my MS I would be a very different person doing very different things. 

‘Me Before You’ is one film I wish had never been made at all and I, for one, will not be rushing to the cinema to see it. In my opinion the actors are not right and the subject matter is controversial and wrong. Disability is not entertainment. It’s real life and should be treated as such.

I have been been gently fuming for a couple of weeks now.

My anger has been like a slow burning fuse on a pile of dynamite and now I am ready to explode.

If you have been reading or watching the local and national news over the past two or three weeks you may have seen stories about a local library in South East London that was scheduled for closure by the Local Authority and was therefore occupied by local people for several days in protest at that closure.

Well, that was my local library. If I hadn’t been stuck in bed due to my impairment, I would have been there too but I wasn’t able to take part in that bit of the protest, much to my chagrin. However, that doesn’t mean I did nothing. I might not be able to protest physically any more but I can do it in words. Writing is what I do best so I wrote. My contribution to the fight was to send letters voicing my concerns to local Councillors and MPs asking them to stop what they were doing and reconsider. I wrote to all three to my councillors, only one responded, I wrote to my MP who sent me a nice but largely ineffective email back, I wrote to members of the Greater London Authority who didn’t bother replying to me at all and I wrote to my MEP who ignored me. All the protests, the marches, the occupation, the petitions and the letters were disregarded and ignored and the library ended up being closed.

But the fight goes on.

The closure of the Carnegie Library in Herne Hill was part of a programme of library closures planned and orchestrated by Lambeth Council. The idea seems to be that we will get a lovely, but unwanted and unneeded, new gym, with a bookshelf in the corner, and no Library staff whatsoever. Lambeth Council are hellbent on getting us to exercise our bodies whilst ignoring the importance of exercising the mind.

How short-sighted. How wrong and how short-sighted.

But that’s not the thing that’s angered me the most about the whole situation. No whilst I am incensed by the library’s closure, the thing that has rattled my cage and prompted my ire, and this blog, is the email I received from one of my Ward Councillors in response to my letter of protest.

Councillor Jack Holborn, Labour, informed me, in an email,  that: ‘If we specially exempted the library service from any cuts, more would have to come from the big areas of the budget, such as looking after older people, or council tax support for the poorest.’

How dare he!

How dare he try tugging on heartstrings by implying that it was the library or services for the most vulnerable in the Borough that had to go! He was obviously trying to make me feel guilty about wanting to put books over people. Well, I am a severely disabled person and a qualified Librarian and what he has written will not wash with me. I find it despicable.

Libraries are not just about books, libraries are about people too. Libraries are places people visit to find information about local groups and services. Libraries are places where local groups such as local historians, and preschool story-telling groups can meet. Libraries are places where schoolchildren can work. Libraries are places parents can take their children, secure in the knowledge that there are people there who can help them to learn. Libraries are places where students can do research for their exams and assignments. Libraries are places where people can access computers and the internet if don’t have that facility at home and where everyone can receive professional guidance should they need it. How dare Councillor Holborn try to imply in his response that, by wanting to save all that and so much more, I was not concerned about local people. I am very concerned about local people Mr Holborne and, what concerns me the most, is the fact that they, and I, am currently represented by someone who would dare to try playing such tricks with my heart and mind and think he could get away with it. Well, it didn’t work. You failed. Jack Holborne, please rest assured that there is one voter here who will never be voting for you again. I would never be able to put my trust in someone who has the nerve to try to do what you have done. Implying that I don’t care about disabled and older people and poorer people was a step too far. I would never be able to trust anyone who believes they can get away with doing that. 

You’ve lost me.

Bye-bye.

I had such a lovely time last week. I got to be a grown-up, which doesn’t happen very often, and it was so wonderful!

Confused? Let me explain.

As a severely disabled person there are many things I cannot do for myself. I can’t walk. I can’t get dressed by myself. I can’t wash myself. I can’t make a meal. I can’t even make myself a cup of tea if I want one. I have to rely on someone else to do everything for me.

Now, before my medical condition deteriorated slowly and inexorably in 2014, I was perfectly capable of doing all that needed to be done either on my own or, if necessary, with the assistance of my, now adult, children. I went out to work full-time during the week, looked after my own family, visited friends in the evening, was a lady who lunched at the weekend, attended social events as and when I wanted to, did my own shopping, stayed up late if I felt like it, had a lie-in at the weekend and got to go away on short breaks if I fancied it. In other words, I had a lifestyle that was comparable with the lifestyles of my peers and the majority of the adult population of this country and most of the rest of the world. I was an adult who got to pick and choose what I wanted to do and I did adult things. In my family we call that adulting. I spent my life adulting.   

Then I got sicker and things changed. The Multiple Sclerosis which has been part of my life for the past thirty years decided it was going to throw a spanner in the works and deteriorate. I wound up in hospital and, although I am a lot better than I was, things have had to change. For the last eighteen months, this has meant that I have had to have carers, or, as many disabled people prefer to call them, Personal Assistants. PAs. PAs coming into my home to attend to just about everything I need, every single day. Quite hard to come to terms with for an independent woman such as myself but I don’t have an option. It is either PAs in my own house or live in residential accommodation away from my family with no independence whatsoever. No choice really, so PAs it has to be.

And that’s the issue. For most of those eighteen months my PAs have come through an agency, paid for by Social Services. I have had little or no control over the care that I receive. I have not been able to say what I wanted done, when I wanted it done or how I wanted it done. I have had no choice at all. My ‘ladies’, as we call them, show up every morning at 9am to wash me and get me ready for the day, make me breakfast and do a small amount of simple housework if they have the time. I have two ladies, for forty-five minutes each, to do everything. At lunchtime I get thirty minutes care from two more ladies when they make me something to eat and get me another cuppa and then, in the evening, another two ladies come at the horrifyingly late hour of 7pm, for forty five minutes each, to get me ready for the night and, if my children are out, warm up a ready meal for my supper. And that, until recently, was it. With a little careful negotiation I was able to make bedtime as late as, shock, horror, 8.30pm but only once a month, if I was lucky, as a special treat. Then about two months ago, I managed to get onto something called Direct Payments whereby Social Services give the money they are prepared to spend on my care package to me and I get to employ my own PAs to come when I want, and do what I want, and everything I feel is necessary, at a time that suits me.

And I am loving it!

I have got my life back! I get to choose who comes, when they come and what they do when they are here. I don’t get to choose how long they are here for, Social Services still dictate how much time I get, but not when that time has to be. And this means that, if I want to stay out past around six-thirty in the evening, I can!

So, last Thursday, I did! I went out with some friends, to the pub, for food, alcohol, conversation and fun and I didn’t have to get home for my evening care visit until the startlingly late hour, for me anyway, of ten-thirty. No watch-checking, no worrying, no rushing, no leaving the party long before the end, no having to act like a small child or a teenager with a curfew. I got to do some adulting again and I loved it. I have not enjoyed myself quite so much in a very long time.

And, now that I have discovered that life can be fun again, I want more. Adulting, in future, will have to have a much greater role in my life. I already have my next night out planned and I’ve only got a couple of weeks to go. After eighteen months of being treated like a very small child I can wait. But not for long.

Life is for living and I want to do some more.  

Long live adulting.  

Interesting.

I have been watching ‘This Morning’ on TV and they were doing a phone-in about a storyline that’s coming up on Corrie and it got me thinking. Given that many people could get help with their issues by seeing characters in their favourite soap operas going through the same thing, could this be exploited in some way? I know that, quite often, we get the helpful message at the end of a programme giving a phone number that people can ring if they have been affected by any of the issues they have just seem, but could more be done?

I think it could.

Soap operas are supposed to represent a dramatised view of everyday life, but do they? As far as I am concerned, we are supposed to relate to various characters because they are going through the same life challenges as us. Sure, most of the time the people on the Street, in Albert Square or up in the Dales seem to lurch from crisis to crisis but can any of these crises be used to help us?

I think they can.

Let’s look at Eastenders, my soap of choice, how come none of the characters appear to be unemployed? They seem to come out of school and waltz straight into a job on the market, in the cafe or convenience store or at the Vic. Is that realistic? No, it isn’t. Most young people move from school to Uni, College, an apprenticeship or, in many instances, down to the local Job Centre to sign on for JSA or ESA. Why does this never seem to happen in Eastenders? It also appears that every single character has a job on the Square. Not one of them, as far as I can see anyway, leaves their house in the morning to battle their way through London congestion to work in the city or somewhere else closer to home. No-one seems to return in the evening exhausted and stressed after another day in their boring office job, pen-pushing. That’s what the rest of us do, why not the Beales, the Mitchells or the Fowlers? Do they all work in the Square? What an amazing place Walford must be with full employment and apparent jobs available at the click of the fingers whenever they are needed. I almost want to move there myself.

Then there are the other opportunities there are to help viewers. What about the obviously disabled character, Donna, does she receive DLA and is she about to be transferred to PIP? In the real world, almost certainly, in the wonderful world of Walford, who knows. Disabled people nationwide are having to go through reassessments, invasive medicals and endless appeals, maybe Donna should have to go through this too. That way the viewing public could be guided towards all the wonderful, helpful organisations that are out there when it seems there is nowhere else to turn. When it comes to Welfare Benefits, a storyline that would resonate with so many people would be a character who is in receipt of JSA or ESA and who gets sanctioned for no real reason apart from a delayed bus making them late to sign on. Someone needing to use a Foodbank and dealing with the potential embarrassment and stigma this can cause. And what about that same character falling into debt and having to resort a payday loan company? Just seeing the problems that can cause and where people need to go to sort things out would be so helpful.

That, in my belief, is only the start of things. I would like to see stories that better reflect the problems of the wider community and potential solutions. I think that would be so helpful to so many. I know Soap Operas are not here to educate, they are here to entertain but surely education and entertainment can be combined. To all the writers and Directors and Producers out there, what about using your characters go through the same things that we do. We’ve had Hayley Cropper in Corrie and Dot Branning in Eastenders, give us more and reflect the lives we are all living every day. Have desperate people who are looking for help and support the same way we do. Show us some of the places we can go and some of the things we can do and you would be doing so much for your audience. Apparently the average Briton spends an entire year throughout their lifetime watching soaps. Help to make that a year well spent and not a wasted year. Help us to help ourselves and give us all some idea where we can go when it looks like there is nowhere. Do that and, I’m sure, we will all place greater value on our TV licences and resent the advertising revenue that is generated for big businesses on Commercial Channels less. Help us to help ourselves and, in exchange, we, your audience, will thank you from the bottom of our hearts.

Education and entertainment intertwined.

Think about it.

As a friend posted this morning on facebook ‘Enough now world! Seriously 31 days into the year – at this rate no one will be left by Easter’. She was, of course, talking about the announcement of the death of broadcasting great, Sir Terry Wogan. Last year we lost Christopher Lee, Leonard Nimoy, Cilla Black and Terry Pratchett to name but a few and, so far this year, David Bowie, Alan Rickman and now, our Tel have gone already. The voices and personalities of my childhood and growing up years. Well known people who, being in their late sixties and early seventies are almost from my own generation. Not that much older than me. It’s a scary thought.

My wise old Grandmother always used to say that you knew you were getting old when your childhood favourites started dying. She was talking about silent movie stars and singers from the 30s and 40s and famous politicians from the 40s and 50s but I am now getting to understand what she was talking about. Hearing that the men and women who were such a huge part of my life, whose faces and voices were so familiar to me, every day, have died certainly is very aging. It makes you start to realise that time is passing and that you too are really getting older. And that makes you start questioning what you have done with your own life? What have you achieved? Have you made a difference? What will you be remembered for?

All this sounds very miserable and maudling but that was not my intention when I started to write this blog. Instead I want to look at my own life, at my first half century and decide if there are things I need to do, things I want to do in my next fifty years so that I can, if possible, leave a positive legacy.

So. Firstly. What have I done? I’m not sure. By far my proudest achievement is the fact that I have raised two amazing children from birth to adulthood. The next generation of my family.  They are now doing their own thing but, I hope, the values, morals and ideas I have introduced them to over the years will hold them in good stead for the rest of their lives and allow them to be happy and successful in whatever the future holds for them. Then there is my working life. Until recently I was an advice and information worker for older and disabled people and I would hope that, in my own small way, I have been able to help make things better for them. I hope I have been able to guide people towards a solution to some of their problems. It sounds very big-headed to me but I hope I have made a positive difference to their lives too through the help and guidance I have been able to offer.

But now, thanks to illness and disability, that part of my working life has, largely, come to an end and I’m now into stage two and the future. What shall I do now? How can I go on doing my bit? Well, so far I haven’t worked out how to earn any money but I am hoping that my newly found ability to write is the way to go. I have always enjoyed playing with words but now, thanks to my blogs, some people seem to want to read my musings. I have always had an opinion on all types of thing but now I’m letting those opinions out to a wider audience. Whether people agree with me or not is immaterial. I’m doing something. Maybe, if that means that a few people will end up with a better understanding of how what happens in the wider world affects the narrow life of a middle-aged disabled woman in South London, that will be a good thing. Who can tell.

I can also try and do what I have always wanted to be able to do and write a novel. Getting my own book into print and onto some people’s shelves would be so special. Over the years I have started many but only finished the first draft of one. Lots of ideas keep racing round in my head but only one has ever made it, in it’s entirety, onto my hard-drive. Maybe my next challenge will be to get drafts two, three and, possibly, four done so I can publish it. Now that would be something to be proud of as well.   

I suppose reading about the deaths of the superstars of my youth, and then, adult life is going to be something I will just have to get used to as the years progress. There’s nothing I can do about that. But living my own life to the full and having no regrets is something I can do. So I will.

 

A couple of days ago a friend of mine asked me to write an article or blog for a local disability organisation about what I use my computer for. I think she is after something that dispels the mysteries and shows how essential using a computer is becoming in the modern age. So here goes.

Right. What do I use my computer and my access to the internet for most? Well, I suppose that one of the main things I use it for is my addiction to social media. I spend most of my time chatting to people worldwide about what they are doing and what their families are doing. Thanks to my computer and the internet I am able to stay in touch with friends in Canada, with family in the British Virgin Islands and with old school friends who now live nationwide. The internet can also help if you are looking for people you have lost. I have recently found a cousin I’ve not seen or heard from in 25 years who is now living abroad and, a couple of years ago, I discovered, thanks to the internet, that a friend from school that I last saw in 1979 in Chester, 280 miles from my home, now lives a very short bus ride away in South London. We are now able to chat all the time online and we get to meet up fairly regularly for lunch and a reminiscence filled gossip in person. It’s so good to be able to do this and, without the internet, it would never have happened. Then there are my new friends. The world is my oyster. I am now in regular contact with several people I have met online who live in Canada and I was chatting with someone in Australia for hours only last week. People I could never have met any other way.

Then there is my father. I keep in regular touch with him by phone but we also email each other quite a lot. He sends me pictures he has taken and little bits of news of what he and my step-mother have been doing which is wonderful and I can, in turn, keep him up to date with my doings and those of my children . Dad is 81 and my step-mum is 83 so, as you can imagine, it’s great to know they are both OK and still enjoying life to the max and it stops me from worrying.

Then there is my writing. I spend a goodly part of my day writing and It’s something I wouldn’t be able to do at all without my computer and internet access. More than anything in the world I have always wanted to write and be recognised for my writing and now I have the opportunity. I do blogs, like this one and I am also write fiction. As yet nothing published but I can but hope that what comes out of my head will be worthy it one day. The internet is invaluable for both sorts of writing for me. As a severely disabled person I am unable to get to my local library to do any research I may need to do but I now have the world’s best reference library at my fingertips.

Then there is shopping. I have just bought some new tops without having to leave my bed. I spot things I like the look of and before I know what has happened the postman knocks and the goods are mine. No fighting my way down a crowded high street or struggling in a tiny changing room for me, all done from the comfort of my living room. If I find that I don’t like something or it doesn’t fit I can just send it back. No problems there! My computer and the internet is also invaluable for more mundane tasks. I do my weekly shop online and the great God Tescos delivers it all, not only that but the delivery driver will even carry the bags inside for me and put them in the kitchen. And special shopping for birthdays and Christmas is fantastic. Only recently I managed to find a picture of my father’s childhood online home by using a search engine, bought it and gave it to him for Christmas. He was delighted and a more personal present I would be unlikely to find anywhere else.

So, what else can I use my computer for? Well, I can make sure I am receiving all the benefits I’m entitled to using a benefits checker such as Turn2Us and then, if I need to, I can follow links to the appropriate application forms and complete them online. I can look for advice and information on just about any subject I can think of. I can chat to other people who have similar experiences or medical conditions to me which is really good as a mutual support network. It’s so wonderful knowing that someone else has had the same thing happen to them and that I am not alone. Not only that but other people may have some hints and tips so what appeared to be an insurmountable problem has become just a little hiccup and nothing to worry about. I can also book appointments at my GP’s surgery, order repeat prescriptions, report maintenance queries to my landlord, contact my hairdresser

All in all, my computer is now my electronic lifeline. Only yesterday there was a problem with my broadband connection and I couldn’t get online, go one with my writing or anything for four or five hours. It was horrible! I was lost. Sure, I may have had to pay for my connection, buy a computer and learn how to use it but it’s not cripplingly expensive and I’m learning as I go along.

Being stuck in bed most of the time could be really dull and boring but my computer is my escape route and there’s no way I could live without it.  Friends and family, hobbies and support, retail therapy and essential shopping, advice and information, leisure and necessity, it’s all there waiting for me and all I need is a computer and an internet connection to be able to access it all.