Archive

Life

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.    

And the whole Doctor Who thing progresses.

As I said in my previous blog, now we have a female Doctor, in the future I would rather like to see a disabled actor play the Doctor.

I think this would be good.

But, this has led to a long and involved discussion, on my favourite Social Media platform, ‘Facebook’, with several disabled people about the normalisation of disability. There’s a group, including me, who are saying that disability and disabled people should be celebrated and included and seen as just part of the vast panoply of human existence that is life and then there’s another group, people who are also disabled in some way, who are saying that being disabled is definitely bad and that an impairment or disability means that something is wrong. They are saying that, if they had the opportunity to become part of the non-disabled world then they would jump at the chance and grab it with both hands. They are saying that they would like to get ‘better’. For me, the question is better than what. Better as opposed to worse? Worse than what?

Well, for a kick off, I don’t see being disabled as meaning that there is something wrong with me at all. I just see it as meaning I am different and, as a result, I don’t want to get ‘better’ in myself at all. I want to see the world get better. I want to see society get better. I want to see attitudes towards disability and what disability means get better, but, I am someone who has become disabled, I was not born this way. Maybe my views would be different if I’d always had my impairment. I am someone who has travelled from the non-disabled world into the disabled community so I’m part of the group that can see it from both sides of the fence.

I was 24 when I was diagnosed with my MS. For me, my disability is not an impairment or something that is wrong with me, rather, it’s a failure by society to be able to cater for me and my needs and ior people like me. My MS is an illness that I contracted from who knows where which means that I have now lost the ability to stand and walk and look after myself on my own and has left me stuck in a bed most of the time and using a wheelchair to get around when I’m up instead of using my legs. It means I have carers coming in daily to get me up and wash me and dress me and feed me and cater for my needs and put me back in bed in the evening. It is a part of me but it does not define me. On the inside I am still the same me I’ve always been, I’m just me with MS as opposed to me without MS. The real me, the internal me that is ME, has not changed. I didn’t walk into my GP’s surgery the day I got my diagnosis as one person and come out as a completely different person. I came out as the same person, just as a person who now had MS and was therefore labelled as being disabled. That was all that changed. My label. The essential me was still the same.

The thing is though, is that the essential me has had to change over the years thanks to that diagnosis. I have had to learn to stand my ground and do my own thing my way and to fight for what I now believe to be right. I have had to learn to fight to be part of a world that was once believed was mine by right. I have had to learn to fight to be part of a world which, in some way, doesn’t seem to want me to be a full member of it any more. I have had to learn how to fight the urge to apologise for being me and having needs that are different and seen to be, in some way, as abnormal.

One of the questions disabled people get asked all the time is whether or not we’d like to be ‘cured’. Now this is something that must, in my opinion, has to be different depending on whether or not you were born disabled or if you became disabled later on. It also must depend on whether or not you experience pain as an upshot of your impairment. If you ask me, I don’t think I would like to be cured. I’m perfectly happy as I am. I’m not really in any pain, I just can’t walk or stand or look after myself any more. And, if the world was set up differently then that wouldn’t matter at all.

I don’t think I want to go back to how I was in my pre MS days because I like the me I am now a whole load better than the me I was before. I have met people since I became disabled that I’d never have met otherwise, done things I’d never have done, been involved with things I could never have been involved with, learnt things about life I would never have learnt about without that diagnosis. Before my MS came aong I was shy and quiet and a bit afraid of sticking my neck out and voicing an opinion but the disabled me with MS is confident, loud, not afraid to say what I think, able to hold my own in an argument and I think it’s the fight I have had to have with life due to my MS that has helped make me this way.

I’m not saying that my life as a non-disabled person would have been any better or any worse than my life as a disabled person but it would definitely have been different. Would that have been a good different or a bad different? Well there’s the question. I don’t know. All I know is that, one way or the other, it would just have been different and I’m not sure if that is a different I would want it to be.

Now, that’s interesting. According to a new report by disability charity ‘Sense’, 25% of respondents to a survey they conducted have said they avoided talking to disabled people because it made them uncomfortable, they didn’t know what to say to us and they were frightened of causing offense. Not only that, but this reluctance seems to be age related with younger people avoiding conversation more than their older counterparts.

Why? Do they think we bite or that they might catch something unspeakable from us? Are they concerned that we can only talk about things are disability related such as wheelchairs and hearing aids and white sticks? Do they expect us to intersperse our conversations with technical references to nasty medical stuff like invasive tests, incurable conditions, pharmaceuticals and distasteful bodily functions?  

Well, I have news for you folks, I, like so many other disabled people, can, and do, talk about so, so much more.

All the time.

In fact, it’s actually hard to shut many of us, like me, up!

I have a similar range of interests to my non-disabled contemporaries. Similar likes and dislikes, similar worries and and fears, similar opinions about similar things, similar funny stories about the exploits of my amazing family. I love eating sushi and all things Italian but dislike curry and anything spicy. I adore watching athletics and gymnastics on TV but get bored stupid by football and rugby. I hate our current Government and all that it stands for, worry about our Nation’s future and all that is just around the corner with Brexit and Trump and North Korea and Global Warming and, wonder what sort of legacy we are leaving for our children to inherit. I can chat about music and films and last night’s terrible TV offerings and Poldark and the latest goings on in Walford. ?I love reading and have so many favourite authors and genres of literature. I like going out for a drink with my friends in the evening and at the weekend and I’m quite good at pub quizzes.

In other words folks, I’m just like you, I just use a wheelchair to get around instead of legs. That’s it.

What’s so scary then and what is it that makes it so? I reckon the problem is routed in unfamiliarity. For too many years disabled people have been brushed to the side and hidden away and non-disabled people have been told that it’s rude to stare. That awkwardness of unfamiliarity begins from a very early age. Small children are hushed and dragged away from us and told not to ask us questions from practically the moment they learn to speak. I once met an obviously exhausted child aged around five or six, on their way home from school, who pointed to my super-duper wheelchair that had headlights and a horn and flashy indicators and asked their parent if they could have one of THOSE for Christmas. Her mother slapped her and pulled her away. Why? I wasn’t offended, I thought it was funny! My friend’s young son, on the other hand, loved it and told his teacher that his Mum’s friend drove her car in the lving room! Hilarious!

What I’d really like to see is far more opportunities for children to meet disabled people from birth onwards and lose the fear. I’d like kids to use their own, natural curiosity and ask us questions without being slapped down and shushed. When my own children were younger, I used to go to their schools to give talks to children in their middle two Primary years about my life and my impairment and how things would be so much better if the world was fully accessible for all, no matter what, and they lapped it up. I listened to their questions and answered them as best I could. Why can’t that happen more often? All children have PHSE lessons where they learn about health and social issues, why can’t other disabled people, like me, be invited to give talks and take the scarey away? Kids could ask questions and find out what makes us tick in a fun and liberating way. Everyone could have some educational fun together. If people were ‘exposed’ to disabled people more, right from the start then maybe they would realise that we are, essentially, just people, the same as they are. If more disabled kids were educated alongside non-disabled kids in mainstream schools and if there were more disabled teachers and youth leaders then maybe the fear would go. It might take a generation to achieve but, with a bit of thought and effort it could happen and then, just maybe, future surveys would find that the awkwardness had gone.

And, I have a tip for all those people, like those questioned by Sense researchers, who are unsure about what they can say to us to avoid awkwardness and offence, why not try ‘Hello’?

    

OK Theresa and Jeremy and Tim and Nicola and Leanne and all the other pavement walking, door knocking, Manifesto-pledging Parliamentary candidates currently pounding our Nations’ streets, I have some questions for you. And, as a disabled person, I’m pretty sure there are many others from my community who have questions for you too. Why are you not speaking to us? Don’t we count? Don’t our votes matter to you? I hope not.

What I want to know, exactly, is what the political big-wigs and hard-hitters and movers and shakers in this country can offer to us? What promises can you give to all of us. What promises or pledges will you make to us? According to all the statistics I have been able to find, there are around 12-13 million disabled people in this country, what are you going to do to our lives any better for us? Are you totally disregarding the collective power and magnitude of disabled people’s votes and the votes of our families and friends? I hope not. Do you really think you can continue to either demonise us or watch others doing the demonising without us noticing? I hope not. Are you going to continue putting our needs to the back of the queue? I hope not. Are you going to go on ignoring us? I hope not.

Well, here are my questions at any rate.

We are told that Social care in this country is in crisis. That there is not enough money to pay home-carers and unpaid carers a decent wage or benefit that reflects what they do to support and enable us. What are you going to do about it? We are the net users of that care, what are you planning on doing to alleviate the situation and ensure that we get the care we want and need to allow us to live our lives to the full?

What are you going to do?

Many of us need to use aids and adaptations in our daily lives such as hoists and wheelchairs and hearing aids and aids for people with visual impairments. What are you going to do so that we can all get the best equipment we need to live without having to fight for every nut, bolt, screw, , plug, cable and electronic component?

What are you going to do?

Then there is the constant battle to find a home, a place to live which can cater for our access needs and accommodate us properly and in comfort. It’s often one of the greatest obstacles we face but one where we appear to get little or no help in getting what we need. What are you going to do to ensure that there are houses and flats and bungalows available which allow us to live in the community with our families, alongside our friends and neighbours without having to fight for funding for alterations and adaptations?

What are you going to do?

How are you proposing that your party will ensure that disabled children and young people can receive the education they need and deserve alongside their non-disabled compatriots? How are you going to try to ensure that they can all study together and not be segregated due to an impairment meaning the school or college is physically inaccessible for all?

What are you going to do?

Everyone falls sick at some point in their lifetime, what are you going to do to ensure that everyone can access the healthcare we all need and not find it being rationed according to how much we need it and how expensive it is? How are you going to give us access to the doctors and specialists and the nursing professionals we need in our hospitals? Are you going to ensure that these professionals receive salaries that reflect their skills and dedication? Are you going to make sure that they have working conditions such as hours and breaks that allow them to do their jobs to the best of their ability and not want to leave?

What are you going to do.

Then there the employment thing. We are told that everyone must work and get a job. What are you going to do to ensure that disabled people who can work get the support they need to do so safely and successfully and that those that can’t work due to their impairments are not demonised and punished for daring to be sick and disabled. Many of us would like to have the opportunity to do something, however small, what are you going to do to help us? How are you going to promote disability in the workplace so that those of us who can work and want to work get the support we need and the opportunity to do so?

What are you going to do?

Talk to us and tell us how you are going to help and support us. Why should we vote for you and your party as opposed to the other parties and their candidates? What are you going to do that will make a difference for us? Don’t write off 13 million potential voters. Please talk to us and tell us what you’re going to do to help us. If you want my vote give me a reason to put my cross next to your name on the ballot paper. What difference are you going to make to my life? Why should I vote for you, please tell me.

What are you going to do?

What is it about being a disabled person which means that everyone seems to think they have a right to know every grisly detail about your life? What is it about having a wheelchair that make you suddenly become public property?

I have not always been a disabled person, I used to be, what is laughingly called, ‘normal’. That’s how I grew up, but, when I was in my mid twenties, everything changed. I became ill and was diagnosed with an incurable and degenerating condition. Not my fault, not what I wanted, not what I was expecting, not my life plan, but it happened and there was nothing much I could do about it except to deal with it and carry on. Life is, after all, for living, whatever hand you have been dealt and however hard it seems to be. Plans change, situations change, everything can change. Nothing ever happens the way you expect so you just have to adapt and do the best you can with what you have. After all, you only get one go at life, what you have is not a rehersal, so, in my opinion, you have no option but to make the most of it and have fun, whatever happens.

But how much fun can you have when the world’s never-ending contingent of poke-noses come along? Sure, when you are diagnosed with a lifelong condition you can expect to be prodded, probed, questioned and cross examined by the medical profession, that is, after all, part of their job but then there is everyone else. All the other people that want to know everything.

There’s the people who decide if you are going to get all the equipment you need, such a wheelchair or a hoist. What do you need them for? How often are you going to need them? When do you expect to be cured? How heavy are you? We just need to weigh you. And, how tall are you? Are you sure? You look taller. We just need to measure you. And what’s your waist measurement? How wide is your bottom? Do you know how long your thighs are from knee to hip? I’ll just get my tape measure. Non-stop but seemingly justifiable questions. They’re fine – annoying but fine. 

Then there are the people who decide if you are going to receive any financial help from the State. They send you forms which include page after page of questions which need a written response and documentary proof if you have it. How does your impairment affect you on a daily basis? Are you able to get washed and dressed on your own? Can you brush your hair? How about your teeth, do you deal with brushing them yourself? Can you manage your own medication? Do you cook your own meals or does someone else have to come in to help you? Can you eat without help? How about using the toilet or having shower, can you manage to do that? Again, legitimate questions, but it’s still not nice. When you are disabled you really should focus on the things you can still do, not the things you can’t. If you focus on those things, the way all the legitimate questions make you do, then it is just so depressing and soul-destroying. You start to wonder what the point of carrying on is and whether you are just a burden. Not healthy.

But, at least there’s a point, of sorts, for all of those questions, money equipment, treatment, all bearable and understandable. No, the questions I’m talking about, the questions you really don’t need are the questions you get from random passers by. The taxi-drivers who ask “So, what’s wrong with you?”, the busy-bodies who seem to think it’s their right to know. Well, it isn’t.

When you’re waiting at the bus-stop in your wheelchair, you don’t expect to be asked by a small child how you use a toilet. You don’t expect to be quizzed by a teenager about whether you can still have inter-course. You don’t need to be challenged by a pensioner about your finances and told you are a scrounger. And you really don’t need to be interrogated by someone you’ve never met before on why you haven’t killed yourself yet. What are you supposed to say to that one? I’m a bit busy to do it today? Not this week thanks? Maybe next month? 

What is it that makes people think it’s they have the right to ask me personal, intrusive questions if they are not a specialist or a professional? Well, in my opinion, it isn’t. Not everyone has the right to ask me anything. Sure, the medics do and the Welfare Benefits assessor does and the Social Care Provider does and the disability equipment specialists do but that’s it. No-one else need to know anything at all about me at all unless I choose to tell them. I have just the same right to privacy as a non-disabled person. What is it about being disabled that makes me public property? If you’re not in the need-to-know category I would urge you to consider once again what right you have to know intimate things about my impairment, my business, my private life. Before you ask me that burning question, ask yourself if you would like to be asked the same thing and if you really have a right to ask me. Once you’ve done that, if your answer is that you wouldn’t and you don’t, then stop, swallow it and walk away. It’s none of your business and I probably won’t like it either.

Sticky-beaks and poke-noses would you just butt out and leave me alone, I’ve had enough.

Oh goody!

Such fun!

The amazingly incompetent DWP strikes again!

Brief bit of background info – I am currently in the process of being transferred from the Disability Living Allowance I have been receiving since 1998 onto the new Personal Independence Payment. Around six weeks ago a kind and long-suffering friend helped me complete the frighteningly lengthy claim form, in excruciating detail, which I then returned, complete with copies of my Social Services and District Nurses Care Plans as evidence that I was not tell lies or over-egging the situation and my needs.

Well, yesterday I received a letter saying they were coming to see me to do a home visit and check that I really am as disabled as I said that I am and that I am really in need the help I say that I do.

Great!

No real problem with a personal visit and assessment except for the fact that it will be a colossal waste of both their, and my time.

First of all the appointment is for 9am-11am. Well, that’s not convenient. My carers come at 9.30am to wake me up, wash me down, attend to all my personal care needs, get me ready for the day and provide me with my breakfast. The assessor will just have to wait in the kitchen whilst I get my full body wash, have my catheter bag emptied and my incontinence pad changed. I’m not having them in my room to watch any of that.    

Secondly, my carers are here for around an hour for my morning visit, and can’t change their times as the have several other clients to see, so the assessor really will have to wait in the kitchen until they have finished everything they have to do.

Thirdly, in order to ensure that the assessors don’t, themselves, lie in their report ,about what they ask me and what I say to them (there are too many reports of this happening with other disabled people for me to take the risk), I will be recording the whole thing. The DWP allow this, if you inform them in advance that this is what will be happening, but it needs to be recorded on a double cassette or CD recorder so that I can keep one one copy and that they can take the other with them. No digital recording on a computer, tablet or laptop, no dictaphones, nothing modern, just an old fashioned cassette or cd recorder. Now, how many people still have one of those?

Not me.

Why am I going to have to go through this indignity yet again anyway? I fully understand the need to ensure that Welfare Benefits are going to the people that are actually entitled to them and need them. But really. Can’t the people at ATOS Healthcare read? I sent copies of my Care Plans for a reason – as proof that I am genuinely disabled. Are my Social Worker and my District Nurses really going to spend time detailing all the help I need if I didn’t actually need it? Is my Local Authority really going to be spending an inordinate amount for carers to come in to do everything for me on a daily basis or no reason? Somehow, I don’t think so.

The pen-pushing jobs-worths in the DWP need to learn to read and start employing some common sense, if, of course, they know what common-sense is. Disabled people, with genuine, documentary evidence of their impairments and the help they need just to exist, should not be hounded, day after day, to prove every little thing, in front of witnesses. It’s not right and it should not be happening. I am an emotionally strong woman but, even I am beginning to feel dispirited and depressed by the constant badgering. For other people all this disbelief and hounding and assessing and justifying themselves can be, and often is, the straw that broke the camel’s back.  

Employ some sense DWP, I beg you. If you ask us to send you medical evidence which proves our claims when we make them, do us the courtesy of actually reading the evidence we send you. You are looking for fraudulent claims so you can stop spending the taxpayer’s money on claims made by people who are not entitled to Welfare Benefits, so stop wasting our money going after people who really should and need to be getting that help and can prove it. What is this country coming to?

As I’ve said before, only this week, would you please just leave me alone. I, and so many other disabled people, have had enough. Learn to read and start checking the evidence you ask us to provide. Doctors and Consultants, social workers, District Nurses, Medical Professionals, don’t write these reports for their own amusement, they write them for a reason. Do them, and us, the courtesy of reading what these reports say and then start going after the reall fraudsters instead of us.

We’ve had enough.    

I think I’m supposed to be grateful.

I think all of us disabled, and older people are supposed to say ‘Thank you’ to the Chancellor, Philip Hammond, for his much flaunted, much hyped boost of £2bn for Social Care in yesterday’s Spring Budget.

Well then.

Here goes…

Thank you Mr Hammond, you are so beneficent and generous.

Sure, £2bn is an awful lot of money, and, with any luck it, at least some of should help ease the Care Crisis we currently have in this country, but it can only help if it actually filters down to the people it’s supposed to be helping. My major concern is that it will be shared out amongst all the Social Services Departments, nationwide, and will just vanish into their usual, annual Social Care black hole. We, the older and disabled people who are the ones who are supposed to reap the benefit will probably get to see little, if any, of it at all.

As someone who is in receipt of Social Care, there I three places I can think of straight off where that £2bn could make a real difference if it was spent properly.

First of all, I would like to see the money being put towards ending the farce of the fifteen minute care-call. How can anyone in their right mind think that fifteen minutes is long enough to provide any form of meaningful care for a disabled or older person? It’s barely long enough to make a sandwich or boil a kettle for a cup of tea, let alone help a frail person access the toilet, get them dressed or undressed, make sure they’re comfortable and safe, cook a light meal and help them eat it, if they need help, make a bed and do a little light housework.

Some of Mr Hammond’s £2bn definitely needs to go towards this.

Secondly, the paltry amount Home Care workers get paid needs to be addressed.

When I was in receipt of Agency Care, via my Local Authority, the workers were receiving little more than the minimum wage, indeed, in some instances it seemed as if they were even getting less than that. I now get my care through a scheme called ‘Direct Payments’ whereby my Local Authority pays the amount they would have spent on Agency Care directly to me and I get to employ and pay for my own carers. In theory, this is a great plan and, for many, it works well but it is impossible to offer a decent wage for the work that needs to be done and therefore, get the most suitable carers. The amount I get, for example, allows me to offer an hourly rate of just £9.40, before tax and NI, hardly a fortune, especially when you consider the level of personal care I am expecting those workers to undertake.  I would dearly like to be able to offer more but, as someone with no private income whatsoever to fall back on apart from my Welfare Benefits, I am stuck with just the funding my Social Services Department allows me every month for my long-suffering and excellent carers. Hardly enough at all.

Some of Mr Hammond’s £2bn needs to go towards this.

Then thirdly, there’s something which doesn’t affect me personally as yet. The amount that is available for both short, and long-term, residential Care Home accommodation. How can we expect older and disabled people to receive good quality, dedicated care when they need intesive care or can no longer live in their own home, if the amount Residential Homes are given for each resident’s care package is so small? We can’t

Some of Mr Hammond’s £2bn needs to go towards this.

What I really want to see most after yesterday’s display of Governmental generosity would be a completely new Care Strategy for our country. There needs to be meaningful consultation with the Care providers, the medical profession and carers themselves, both Home Care and Care Home agencies and workers and the Care Recipients, namely all the older and disabled people who need help to live in comfort and with dignity. We need to be assured that any extra or new funding is being spent wisely and well and is contributing towards the wellbeing of those who need it most.  

Some of Mr Hammond’s £2bn definitely needs to go towards this.