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Monthly Archives: May 2016

Today I woke up in a very reflective mood.

Disability, MS and me. I have spent the whole day thinking about it and trying to make some sense of it. Now it’s time to share those thoughts.

Here goes……

When I was first told I had Multiple Sclerosis, over thirty years ago, I was terrified. I was twenty-four years old, straight out of university, just starting out on being a proper grown-up, with my whole life ahead of me. Then I was hit by a medical bombshell. My world, the world as I knew it, collapsed around me. MS was something I knew very little about. I had vaguely heard of it but, what it meant for me, was a complete unknown. The only thing I really knew was that there had been a woman, in the village where I had grown up, who’d had it. She couldn’t walk, she didn’t go out much, she had used a wheelchair and she had died. That was it.

And now I had it too. Here it was, slapping me in the face. Suddenly it was part of me. It was real. All too real. My life, my future.

What it meant was something I would have to consider, and fast.

Great.

Initially I spent a fair bit of time feeling very sorry for myself. I asked my long-suffering GP a whole load of self-pitying questions and then, as the internet wasn’t really a thing thirty years ago, I went to the library to do some research. What was this thing that had got me in it’s claws and what could I do about it? The answer appeared to be, not a lot. Unlike today, I didn’t find any ‘uplifting’ biographies written by fellow MSers or friendly support groups to pass on advice and information about dealing with the disease, just dry medical tomes which told me little about what to do and how to live, just what was probably in store for me further on down the line and it wasn’t very cheerful.

In other words, not a lot of help.

So that was when I made a decision. I was going to carry on carrying on. That was what my beloved Grandfather would have told me to do so that was what I would do. What choice did I have? Either I could get on with my life and fight or I could give up and despair.

And that wasn’t me.

Some people may have said that I was burying my head, not being realistic and just hiding but I don’t think I was. I was a young woman with a whole load of life ahead of me and I was going to do my best to enjoy it.

I moved down to London, found a job, had a family and carried on. At first, and for several years, the MS didn’t affect me much. Sure, over time my walking became affected and things got a little harder but I coped. Then I was offered and accepted a temporary job with a local disability group. And that was when my new life really started. I got to meet other people with a host of different impairments, I learnt about the world of disabled people, I found out about all the support groups that were available and I got involved with proper activism for the first time.

Over the subsequent twenty years, whilst the MS got worse, my life has got better and better. I have been involved with some incredible things. I have been to some fantastic places, I have made some very special friends that I would never have got to know otherwise. I have done a post-graduate Law qualification, I have started writing and, through it all, I’ve enjoyed myself and had a good time. All things I might not have done if I hadn’t become become disabled and been given the opportunity and the tools to learn to live with it.

The life I have now is very different from the life I might have had if I hadn’t become ill but, whether I would have enjoyed it as much if it hadn’t happened, is something I will never know. All I can truly say is, thanks to my MS I have become the person I am today and I am grateful for it.

I live it, I feel it, I own it. Bring it on!

 

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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.

Why is it that, when non-disabled people are talking about or to disabled people, they feel that it is perfectly fine to say or ask whatever they like? Regardless. Absolutely anything. Things they would not dream of asking or saying about a non-disabled person but, because we are disabled, they feel they have a right to know.

Surely, people don’t do that, I hear you say. Well they do. Granted, it’s not everyone, most people are great, but it certainly does happen and it is definitely not fine. Just because we are disabled it doesn’t mean we don’t have feelings. Rule of thumb here guys, if you wouldn’t like people to say what you are about to say about yourself, then, in all likelihood, your disabled compatriot is unlikely to like it either.

And, most of the time, it’s not necessary either. Again, before you open your mouth ask yourself why you are about to say what you are about to say? Is there a valid reason or are you just being nosey. In many, if not most cases, it’s the latter and not the former. You really don’t need to know at all.

So what kind of thing am I talking about then. Well, I’m sure just about every disabled person in the country, in the world really, can think of more than one occasion when someone has said something that was unnecessary or hurtful or when they have been asked something intensely intimate and private when there was no need.

Last weekend a friend of mine was very upset when she overheard a visitor to her home in conversation with her partner. My friend, who has an impairment which can cause her intolerable pain, was in bed after having a very bad night due to pain and nightmares. The inconsiderate visitor was heard saying that she thought my friend was extremely lazy and asking, couldn’t her partner do something about it, because it just wasn’t right for someone in their early twenties to be so idle. Thankfully, her partner dealt with the situation very well and the visitor later apologised but, knowing that my friend is disabled, why did this person feel they had the right to say what they did if they didn’t know the full circumstances?

And it’s happened to me too. Just because I am obviously disabled, and use a wheelchair, I have been asked questions no-one in their right mind, would ask a non-disabled person. “How do you go to the toilet?”, “Can you have sex then?” and, said with some incredulity, “You mean you’ve got a job then? You work?” These are genuine questions I have been asked by random strangers on the bus or in queues at the checkout. I have even been stopped in the street and asked if my children were mine because they weren’t disabled too. Who thinks they have a right to do that? I think the most hurtful question I have ever been asked personally was when I went to my GP to get the result of a pregnancy test. The doctor had the brass nerve to say, almost without stopping for breath, “Congratulations Poppy, you’re pregnant. When would you like the abortion?” Once I’d retrieved my jaw from the floor, I said I didn’t want one. She then said, “But you have MS. How will you look after a baby?” Apart from the fact that, at that time, my MS was fairly newly diagnosed and was causing me very few problems, she was also completely ignoring the fact that I had a partner, parents, a sibling and other friends and relatives who could lend a hand if I needed one. Much the same as any other young, pregnant woman actually. Why did my MS diagnosis mean that this woman felt she had the right to say what she did. In my opinion, she didn’t. My MS didn’t mean I was completely incapable. Sure, I might have a few difficulties but, doesn’t everyone else? Thankfully, her fears were, as I had expected, unfounded and I had no problem with my pregnancy whatsoever. Or with my second pregnancy two years later for that matter, a very different experience altogether, thanks to a new, understanding GP and a supporting Midwife.

Just because someone is disabled it doesn’t mean their life is public property. How their impairment affects them should be on a need to know basis only and if you don’t need to know, don’t ask. It’s private and unlikely to be any of your business. If you wouldn’t like to be asked yourself, move away and stop being a poke-nose.

Last week I had one of my regular long chats with my wonderful father and, as it often does, what he said got me thinking. Why don’t more older and disabled people know about all the things they are entitled to from the State and that they deserve to receive? How many lives could be improved and made easier if people just knew what’s out there to help them? Welfare benefits, home helps, aids and appliances, it’s all there and available but people often don’t know about it or don’t realise it applies to them and their own particular circumstances.

My father and my Step-Mother are a case in point. They are now in their 80s and their health is not as good as it once was. They both have trouble walking any distance due to disablin medical conditions and in doing all the things they used to delight in. They have had to slow down and do less than they used to. But, with the right help and support, they can still do what they want, when they want to do it. They can go on leading the happy, enjoyable, fulfilled lives they always have done and, more importantly, be able to continue to do so for many years to come.  

A couple of years ago I realised that neither of them knew about one of the main Welfare Benefits they were entitled to and, in my opinion, should have been receiving for several years, namely Attendance Allowance. No-one had ever told them about it, let alone mentioned it, even in passing. Attendance Allowance is a payment made to older people who need a little bit of extra help due to the restrictions placed on them, not only because of their age but also if they have any disabling medical conditions as well. They can, of course, use the money how they want but most people use it to pay for some kind of home care or for aids and adaptations within their homes to make life easier. It’s not a huge amount but it’s regular and it can help. I told my father and Step-mother about this benefit, they both applied and were awarded it. And what a difference it has made for them. My father has been able to buy himself a motorised scooter which has given him the freedom and independence to go out and do what he wants in the small seaside town where he lives. My Step-mother has been able to pay for a cleaner to come in once a fortnight to deal with the more awkward elements of housework that needed doing and that she was no longer able to tackle as easily as she once was. As far as I am concerned, this is exactly what the benefit is for, to give two older people who have worked hard all their lives the freedom and ability to remain in their own home rather than having to consider selling the house they love and have lived in for so many years and moving into sheltered accommodation or a care home.

But why did it take me to tell them about it? If it wasn’t for the fact that I have worked for charities for older and disabled people, giving advice and information on benefits, for many years they might never have found out what they could get. Why didn’t someone else such as their GP or their medical specialists give them the information. People find out about the help they may be able to get despite the system and not because of it.

Today I have seen reports about £12bn in unclaimed benefits. I wonder why. Could it be because people don’t know or understand what they are entitled to? There must be a way of ensuring that more people find out what there is out there for them and giving them the help they may need with applying for those things. Maybe, instead of having work coaches and employment advisers in doctor’s surgeries it would be better and more efficient to have benefits advisers there instead. Professionals who could help patients understand what they could get and, more importantly in my view, assist with the complicated application process. After all, if people were in receipt of the all the help they are entitled to then they may not need to visit their doctor so often and could stay out of hospitals and needing expensive and invasive social care help for longer. It might cost a little more to do this but there would be savings down the line in other areas as a result. Consider the picture as a whole and not the individual elements in isolation. Give people an easy understanding of what they are entitled to, help them apply and get rid of the hurdles stopping people from getting it. It makes sense in the long term.

Poppy’s Place would like to join DPAC and ‘Same Difference’ in supporting this campaign.

Same Difference

Same Difference joins DPAC in supporting this campaign.

DPAC are supporting Disability Labour’s campaign to scrap PIP

Please read the letter from Disability Labour below and then sign and share the change.org petition Disability Labour : Call for inquiry into Capita PIP assessment process and un-ethical conduct

Dear colleagues / friends,
 
As you will be aware, last week, Disability Labour delivered a letter to the Prime Minister and to Work and Pensions Secretary, Stephen Crabb MP, following the Ch4 Dispatches programme, which revealed the most appalling abuse of claimants with complex healthcare needs. ( Letters attached )
 
With extremely limited resources, we have attempted to do something about the PIP scandal, which is now discredited but continues to cause deep distress to tens of thousands of vulnerable people across the nation.
 
Today, we launched our Change.Org campaign, calling for an inquiry and for the PIP programme, to…

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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.