From Under the Duvet….

via From Under the Duvet….

From Under the Duvet….

‘Confined to bed’. ‘Restricted to bed’. Bedbound, bedridden. Words and terms that sound so pitiable. So pathetic. So awful. A life that’s hardly worth living. The end of ever having a ‘normal’ life again. Better off dead. But that’s not the case. It doesn’t have to be like that. Being stuck in bed most of the time doesn’t have to mean it’s all over and life is finished. There is so much that can still be done, so much left to do, so much life yet to live. I know there are many people who are in horrible pain or, at least, in considerable discomfort for much of the time and I can’t speak for them as I haven’t experienced it and don’t fall into that category, but there are also lots of people, like me, who are just unable to get up much because of their impairment. This can be due the medical equipment they need to stay alive, due to the lack of help and support they have or at least, just because its such hard work to do it and its often not worth the effort. I’m one of that category.
With assistance, I can get up and sit in my wheelchair and go out but I usually just can’t be bothered. It takes several people, lots of planning and a whole load of equipment to get me into my wheelchair and ready to leave my room. So much faff and palaver. And then, of course, we would have to do the reverse to get me back to bed later on, when I return, so I usually just don’t do it. Another two hours of my life, one at either end of the day, that I wouldn’t get back. Why go through all that if I’ve nothing to do, nowhere to go and no-one to see. Might as well just stay put. Most of the things I would do if I got out of my bed can also be done from under my duvet anyway so most of the time, that’s where I stay. Shopping? I can get what I want online and have it delivered straight to my door. I can get items from anywhere in the world, not just my local high street, and it’s all so very easy. Meet with friends for coffee? I have some lovely friends who come around to my house to visit regularly, with delicious treats and gooey cakes so that we can indulge ourselves together, here. I’m considering buying a coffee machine too. Last of the big spenders! Trips to the cinema? Netflix is a thing and I have a Dvd player. Meet new people? Hello Facebook and Twitter! Loads of people from all over the world to chat to there. Get a job? More and more employment opportunities are available online which can be done from home. Amongst other things, I’ve done envelope stuffing, entered responses from surveys onto a database and worked on a National helpline where I provided advice, information and assistance to callers by phone, email and letter. Continue my education? I am considering doing a course online through Open Learn or the Open University or with one of the plethora of US universities which have online courses. The world of education is, as they say, my oyster. Be involved in local life? All things are possible. I’ve stood – well, lain down any rate – for election to my local Council and I’m involved with local pressure groups, trying to improve life for everyone in my area too. They all have websites, with a Social Media presence, and so do I. And National Politics is not a no-go area either. I can be involved with that too. I’ve been a member of the Party for many years and I’ve been on the national Executive for the Liberal Democrat Disability Association for several years. I was recently on a selection panel for a role at HQ which was conducted by phone and online and that all went very well. I was very much involved with the whole process, felt that my opinion was valued and considered and never got the impression I was just a token towards diversity and inclusivity. Hopefully, I’ll get the chance to do something similar again in the future. I am also a bit of a teacher too. Once or twice per year for the past 4 or 5 years, my lovely GP has sent a group of medical students from Kings College Hospital round to visit me so I can help them learn how to work with people like me and develop their ‘bedside manner’. I consider this to be helping lovely GP with her work, a valuable lesson for the students tat they can’t learn from books and I love doing it. Its part of my way of ‘giving back’ and saying ‘Thank you’. If it means that even just one of them, becomes a better, more empathetic medic as a result then I’ve done my job, made a difference and I’m happy.
And then there are the hobbies and activities which can all be done from or in my bed too. I like writing. Both fact and fiction. I have had my work published in the National Press, written articles for magazines and journals and have been commissioned to produce items for various websites on a variety of topics. I also have fun every year with something called ‘Nanowrimo’ or National Novel Writing Month. This takes place worldwide every November and participants are challenged to write a novel of at least 50,000 words in just 30 days. Thousands take part and its such fun. Your imagination runs riot and the words can just flow. Several people have written best-selling novels after taking part in the challenge but, even if you don’t, its still really good fun trying. I’ve done it twice so far, achieving my 50k once, and I have an idea bubbling at the back of my brain for my next attempt. Whether anything comes of it, watch this space but, if nothing does, there’s always next year!
Spending most of your life under a duvet is no longer a reason for withdrawing from the world and slamming the door shut. There are plenty of things to do, people to meet and ‘virtual’, places to go so I’m off to meet, do and visit them all as soon as I can. Why not join me, it’ll be fun!

Purple Tuesday? Why not Purple Everyday?

The Tory Concept of ‘Purple Tuesday’, “the UK’s first accessible shopping day” is all very well and good but it does not recognise that, for a disabled person, being able to actually enter a shop is the end of the story, not the start.
Until Disabled People are able to gain accessible and equal employment so we are able to earn as much as non-disabled people to spend on Purple Tuesday, we are not equal.
Until Public Transport is fully accessible for all Disabled People so we can get to the shops on Purple Tuesday, we are not equal.
Until our Town Centres are fully accessible to all so all Disabled People can move around easily without having to make detours to find accessible crossing points on Purple Tuesday, we are not equal.
Until all Disabled People can access shops and businesses on our own so we can be fully independent on Purple Tuesday, we are not equal.
Until all Disabled People can access banks and cash point machines on our own so we can get our money to spend on Purple Tuesday, we are not equal.
True equality for all Disabled People will not come until society recognises that just one day is not enough. True equality for All Disabled People will only happen when EVERY day is a purple day and disabled people are recognised as equal in all things and at all times.
We need to see complete purple days, weeks and months. We need to see full equality for disabled people in all things an in all ways. Until then, we are not equal.

Holistic care

via Holistic care

A cynical, pre-election publicity stunt?

Guess who’s angry again? Yup, you got it, ME!

I don’t know how many people will remember last year, when I got seriously angry about the closure of my local Library, the Carnegie Library, in Herne Hill, South London. Well, we’ve had some good news at last. After a year with no service whatsoever, we’ve got it back! The Carnegie Library has reopened! There has been much celebratory coverage of this in the papers and on local TV News programmes. The Head of the Council has been doing the smiley, happy, noddy thing for the cameras again and everything in the garden is wonderful! We have access to our books once more! Lovely. Whoop-de-do!!!!!

Except, it’s not lovely. Well, not lovely for everyone anyway. There is now no access to the Library available for wheelchair users, or people with mobility impairments, or for some older people, or for all those people who cannot climb the many, steep stone steps up to the main Library entrance. We have been excluded. Admittedly, access never was great but it used to be, at least, be possible. There was a bell at the bottom of the steps you could ring to alert the Librarians to your presence and then, one of them would come out to you, accompany you round to a side entrance and let you in so you could use a small lift to the main library, but that isn’t there any more. As I say, it wasn’t ideal but it was, at least, possible to get in to choose your own books or to do some research or to find information about local amenities or to do anything else Library related you wanted to do. But no longer. Now, that access has gone. Lambeth Council, in its infinite wisdom, seems to think that what the people of Herne Hill REALLY want is a much smaller, inaccessible Library and, yet another blinking gym. The entrance we used to use in order to access the lift is now the entrance to the building site that will become the gym, there is, no longer, a lift available and there is no alternative entrance for us.

Great.

According to our wonderful Council, the Library that was gifted to the people of Herne Hill by Andrew Carnegie, opened in 1906, and loved and used by local people, young and old alike, for more than a century, is no longer needed. What we all REALLY want is a gym and a much-reduced, inaccessible, Library service. Sure, the library will, for now, at least, be open to some people, for short periods, but not for everyone. People with mobility impairments get left outside, in the cold, the wind and the rain. Many people who used the Library regularly will now not be able to get in at all. And, for those people who can gain access, we don’t get a full-time Librarian the way we used to, we get a member of the Gym staff instead. And some security guards. And a phone to the Librarian in Brixton. So, if you can get in at all, and you are looking for a specific book or for some essential information, or for any sort of help whatsoever, you have use a phone to have a Librarian a couple of miles away, tell you which book you want, what shelf it’s on and what it looks like. Now that’s going to work all fine and dandy – NOT. I am a qualified Librarian myself. I spent three years at University training for my qualification. No-one will convince me that an untrained member of staff from the gym and a phone will be able to cope for longer than a day or two. And don’t even get me started on access for people with hearing impairments who can’t use phones at all. You won’t like it.

No. I think that this so-called grand ‘re-opening’ is not a true re-opening. We, the people of Herne Hill, have been sold a pup. Given that there are Local Government Elections less than three months away in May, I am pretty convinced that this ‘re-opening’ is little more than a cynical pre-election publicity stunt. The people of Herne Hill want their wonderful Community Amenity back the way it used to be and we don’t want a gym. What we want a full-time, fully staffed, fully accessible library full of books and dvds and local information and local interest groups and joy and love and laughter. If you want us to consider giving you our vote, give us back the Library Andrew Carnegie gave to us and we’ll think about it.

And please would you make sure that it is fully accessible to all of us who want to use it.

What part of I CAN’T don’t you understand?

Well, that was soul destroying.

I just watched a Channel 5 report, broadcast yesterday, about a couple who both WANT to work but are unable to do so thanks to the wife’s impairments. She is not physically fit enough to work so, as a result, she claims Welfare Benefits but she’s now being punished for this. The little money she gets is being cut and cut and cut gain and there’s nothing she can do about it.  She cannot go out to work, she’s too disabled to do so. All she is being told to do by politicians is to get a job, only this week Theresa May said “Working is the best way out of poverty” – what part of SHE CAN’T don’t they understand?

As someone who is in a similar situation, this report rang very true. It’s all cuts and it’s so hard when there’s nothing you can do about it, you just CAN’T go out to work. I am largely restricted to a bed in my front room thanks to my MS and the restrictions it places on me and it feels like I am being punished by the Government for daring to be sick. I didn’t ask for this, it happened and, like so many other Disabled People, there was nothing I could do about it. I was diagnosed with Multiple Sclerosis in 1984. Just like the vast majority of impairments, this was not my fault and there was nothing I could have done to stop it, it just happened and I was left to get on with it as best I could. Very sad but life goes on. I’ve been a full-time wheelchair user since 1992/3ish but I still managed to work, full time, until 3 years ago when infected pressure sores put me into hospital and then this bed. I WANT to work. I LOVED working. I loved my job and the camaraderie I found with my colleagues.  I loved what I did every day. In my view, it was the best job ever. I was an Information Officer with a National Charity and I loved being able to help other people but, unfortunately, I physically, I can’t do it any longer. My impairment put a premature stop on my ability to go out to work. I didn’t choose this lifestyle, no-one in their right mind would, I’d love to change it but I can’t. Having minimal money is bad enough but being told, continually, by politician after politician that I should get a job if I want to make my life better is just rubbing salt in the wound. What part of “I CAN’T” don’t they understand?

And then there are disabled people who WANT to work and who TRY to get a paid job so they can work their way out of poverty, as we are told to do, but they are being prevented from doing so by Society’s attitude toward disabled people. We often have no problem finding a volunteer role but, for some reason, these employers don’t want to pay us to do the same jobs. They are happy to take us on as volunteers but, as soon as the possibility of a salary is mentioned, heads start to be shaken and the excuses rain down. A friend has just said to me “I also want to work and get out and do part time. I applied for various jobs after leaving college in 2005ish. No-one wanted to know so I stopped applying and did volunteering instead but that doesn’t solve the money issues, it just gets you out of the house.” And that begs another question – if a disabled person is perfectly capable of successfully holding down an unpaid, volunteer role, what is it about their impairment that makes employer think they would be unable to hold down the same or a similar role if it was paid?  

How much longer are Disabled People going to be told to get a job and work our way out of poverty? How much longer are w going to be blamed for something that is not our fault. We didn’t ask to be sick so stop punishing us for it, after all Mrs May, next week it could be you. Listen to what we are telling you and stop telling us to do the impossible. We KNOW that working for a living would be the best route out of poverty for us but, for many of us, work is an impossible dream. Our impairments are stopping us from doing what you are forever telling us to do. Getting a job and working our way out of the poverty you are inflicting on us.

So, for the last time, what part of ‘we’d love to work our way out of poverty but we can’t’ don’t you understand?

WE JUST CAN’T, OK?

We’re the problem? Again? Not true…

I am not a happy bunny.

Yet again, disabled people are being blamed for non-disabled people’s lack of attention. Yet again it’s us who are at fault, not them.

I have just watched a news report talking about the need for a new training video for scooter and electric wheelchair users to help reduce accidents with pedestrians.  Apparently, there have been several incidents where bad scooter driving has got someone hurt so, obviously, we need to be trained to use our mobility aids more responsibly, but what about badly trained pedestrians? How about a training video for pedestrians?

Ask any wheelchair user or scooter user and we all have stories to tell about accidents and near misses caused by other people not taking care or looking where they are going but where we have been blamed. There’s the people who walk around texting or reading social media and not looking where they are going. People on their phone talking to their friends and not paying attention to what is happening around them. People who are walking in front of you who suddenly just stop, without warning, so you run into the backs of their legs. People who are so engrossed with the conversation they are having with their companions that they are blind to what is going on around them

And, my personal favourite, the people who just barrel out of shops without a care in the world and without looking, walk straight into you and it’s your fault. It happens every day on every street I the country and it is ALWAYS it’s us who caused the problem by not looking where we’re going, never them.

Why is it always OUR fault and US that need training? What about training for schoolkids on using pavements responsibly that they may be able to show their parents and remember into teenage and adult life. When I was a child we had the Tufty Club coming into my school to teach us road safety how to use our bikes properly, how about a Tufty Club for pedestrians? School is where you are supposed to learn valuable life lessons, surely learning how to be considerate of other pedestrians is a life lesson we should all learn, Walkers and wheelies like. How about an ad campaign on the TV and in our cinemas reminding people that responsible pedestrians should look down as well as straight ahead and keep their eyes on the pavement. Doing that may have and added benefit and even help people avoid stepping in dog poo and getting chewing gum on the bottom of their shoes as well.

Contrary to popular belief, wheelchair users and scooter users are not driving around looking for pedestrians we can target and squish, we are doing the same as you and going about our daily business as best we can. We are not waiting round every corner with evil grins on our faces and score cards in our hands counting daily hits. We’re going to work, going shopping, meeting up with friends for lunch, taking a ‘walk’, having a life, just like you.

I am happy to acknowledge that wheelchair and scooter users need more training too. When I was given my first electric wheelchair at my local NHS wheelchair clinic the only training I had was a five minute jaunt round the clinic’s carpark learning how to get my chair up and down the kerb. No higher than 2 – 3 inches or I’d tip over and fall out. Nothing about dealing with people walking into you and then tutting nothing about watching out for people opening doors and walking straight into you, nothing about people paying more attention to their phone than to the world around them. Five minutes later I was off home in the accessible ambulance to start my new life in my local area as a terror on wheels. It was a case of practice makes perfect, no license needed. You can buy a scooter or a wheelchair on the internet, wait for delivery then jump on and drive off without a care in the world and with no instruction at all apart from how to turn the thing on and off and where to plug in the charging cable. This training thing works both ways and we need more than that too.

Come on folks, let’s ALL try and consider the world around us as we move about it. Sure, wheelchair/scooter versus walker accidents will happen but please acknowledge, it’s your fault as much as it is ours. Let’s all try looking where we’re going and trying to consider others as well as ourselves. Let’s have training for all pedestrians, not just wheelies. We’re ALL at fault, not just US.

Live for today, tomorrow may be too late

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

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

So, here goes, here are my thoughts.

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

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

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

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

It was too late.

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

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

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

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

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

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

So what’s the solution? Ideas please…

I experienced a modern modern day problem yesterday which I think we, as a society, really need to think about pretty urgently.

I am someone who has one of those pendant alarm buttons which are issued to older and disabled people so we can call for help should we fall or have an urgent medical issue, where we need medical assistance when we are on our own if fall and injure ourselves or become ill and need rescuing.

And, most of the time, this is a good plan, just as long as it all works smoothly. But, and it’s a big but, these alarm buttons rely on us having a working landline connection and, unfortunately, that is not always the case as I have now discovered.

Briefly, I live in South East London and get my telephone and Internet service provided through Sky, which is usually fine. However, yesterday evening we had a massive power outage thanks to some rats which eat through some fibre optic cables somewhere, knocking out both the phone and the Internet for thousands of us across the entire area. No phone, no Internet, nothing. Silence. Very annoying for most people anyway but, for those of us who have alarm call buttons for emergencies, this meant we were unable to use them to call for help, should we need it, from around 11pm last night until about 10.30/11am this morning.

Twelve whole hours when anything could have happened.

In my case, this issue was compounded by the fact that my mobile had run out of battery and needed charging but that’s my fault and it’s now connected to my charger, doing it’s thing but there must have been other people who don’t have mobiles at all who experienced the same outage as me. So what were they supposed to do?

Only this week I learnt about someone in one of my Facebook groups who, having knocked over a bottle of bleach onto the floor, fell out of her wheelchair and ended up lying in the resultant corrosive puddle for several hours before she was rescued, who now is in hospital with serious chemical burns on her arm and chest. Thirty five years ago my own grandmother, who was in her eighties at the time, died in hospital following a fall in her kitchen when she broke her hip and lay injured on the floor for many hours before being found. Sure, had either Grandma or the Facebook wheelchair user had an alarm button they should have been able to call for help, but only if the system was working.

Which, last night, it wasn’t.  

I’m lucky, usually my daughter is here as she lives with me and last night, because she’s away, a friend stopped over for the night so there was someone I could have yelled to if I needed them but, what would I have done had I fallen out of bed, been unable to use my alarm button and my friend had not been here? Lain on the floor, all night, alone, cold, possibly seriously injured with a broken arm, leg or hip until my carers came for their morning visit and found me.

It’s the stuff of nightmares and doesn’t bear thinking about.

So, my question is, are we too reliant these days on the pseudo safetynet of technology and, if we are, what can we do about it? Is there a solution? Perhaps Local Authorities should have an emergency team who are on call, in the event of a techno failure, to go round to everyone who has an alarm button to make sure they are ok. Possibly, but probably impractical and certainly expensive. Maybe those of us who are issued with an alarm call pendant, which we have to pay for, should also be issued with an emergency mobile phone that the button is also linked too so that, in the event that the landline goes down, the button links to the mobile service provider instead. More practicle but also expensive but it has to be better than than having no backup plan whatsoever

I don’t know what the solution is but somebody could have ended up seriously ill, injured or even dead thanks to yesterday’s power outage. We need to think fast and we need to think of something now before it’s too late.    

Judges Rule DWP Was Wrong To Deny Disability Benefit Appeals

Same Difference

The Department for Work and Pensions has been unlawfully stopping people going to tribunal to appeal against decisions to refuse them benefits, three senior judges have ruled.

The upper tribunal found it was wrong for the DWP to refuse claimants the right to appeal if they took more than a month to ask for a review of the benefit decision.

It comes just a week after a supreme court finding that the government was unlawfully charging fees of up to £1,200 for access to employment tribunals.

The DWP system was challenged by the Child Poverty Action Group and two claimants with serious mental health problems who were refused disability benefits and then failed to ask for an internal review within the one-month time limit.

They made late applications for an internal review, called “mandatory reconsideration”, of their benefit decisions, but the DWP initially refused to change the decision or let…

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