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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.    

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Well, that’s interesting.

I’m currently having a fascinating conversation on Twitter with some fellow Whovians discussing the big reveal today for the 13th regeneration of Dr Who.

We’ve got the usual posts and suggestions for a female Doctor or a Black Doctor but I suggested the possibility of a Disabled Doctor.

And I got this instant response ‘Get what you’re saying, but why would the Doctor’s regeneration leave him with a disability? Unless it went wrong, future story perhaps?’.

My hackles were raised – doesn’t this reply indicate the issue in a nutshell – ‘unless it went wrong’.

This implies disability is bad.

How about equality?

If a Black Dr or a Female Dr or an LGBT Dr is not a stretch, why would having a Disabled Dr mean that something went ‘wrong’? Where’s the big issue here? What’s the difference?

A friend has pointed out that the Doctor goes to places throughout the universe and, in that case, for some races/groups of Aliens, couldn’t being regenerated as a human be seen as something going ‘wrong’? If those aliens saw having six legs, two heads or wings and a tail as ‘normal’ then, being regenerated in human  form as completely wrong. If the Doctor regenerated as a Dalek, Cyberman or Sontaran then, for humans, that would be ‘wrong’ but for another Dalek, Cyberman or Sontaran it would be right and nothing to comment upon. Being human, in that instance, would be the abnormality.

I think this is actually yet another example of many people’s inability to deal with the concept of disability as just an alternative form of ‘normal’ . People don’t like to think of disability as anything else apart from being ‘wrong’ when it’s actually their attitude that’s wrong. If I’m out and about with a group of other wheelchair users, we’re our own normal and any upright or walking companions are the ones who are different. A group of hearing impaired people chatting away using BSL are no different from a group of French or German people speaking their own native tongues to one another, they just can’t hear the words or voices, rather, they just see them instead. Visually impaired people reading books with their fingers, in Braille, are not doing it wrong, they are just doing it as an alternative form of right, just as people who are not visually impaired reading print or handwriting is right.  We’re still seeing non-disabled actors ‘cripping up’ for roles in films as disabled characters. We have heard, only this week, of people being unsure about talking to disabled people in case they offend us. We’re seeing paralympic athletes being seen as ‘superhuman’, ‘brave’ and ‘inspirational’. Why? Disabled people are, after all, just people, we’re just people who are different in some way to what is perceived by the majority to be ‘normal’. There is nothing ‘wrong’ with any of us, we’re all just different and it’s time to start seeing ‘different’ as ‘normal’. We need to start seeing people just as people, regardless of their gender, sexuality, colour or disability. Sure, the Doctor recently had a storyline where he was blind for a couple of episodes, but he got ‘better’. Baby steps in the right direction but we’re nowhere near ‘there’ yet.

So, do I think we’ll get a disabled Dr for number 13? Almost certainly not. I still don’t think  people are ready for it. Dr 13 my well be Black, they my well be female but I think we’re still going to be waiting for a disabled Doctor until regeneration 14, 15 or 16. It will happen, I’m convinced that it it will, eventually, happen but probably not today.

But I’ll still be watching, I couldn’t not…

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’?

    

And, yet again, I am feeling angry and reflective in equal measures thanks to something I’ve just seen on TV.

I’ve just seen an interview with one of the two homeless guys in Manchester who ran to help people who were bleeding and lying, seriously injured and even dying at the Arena and in the street, after the horrible attack in Manchester earlier this week. What an an amazing, selfless, wonderful human being. He fully deserves all the praise and plaudits and gratitude he is receiving, a true hero. And he wasn’t the only one either. I’m sure we’ve all heard of the other gentleman who cradled a dying woman in his arms as well. He was also homeless but that didn’t stop him trying to help where he could and offer comfort where it was needed.

But, what’s got me wondering is what’s actually happened here? What’s changed? Would the people who are setting up Go Fund Me and Just Giving appeals and donating money to these guys have even given them a second glance prior to the attack? Would they, would I, would most of us have offered help or food or money or a kind word or even a smile to them in passing? I would hope so but I don’t know. Sure, some people might have but, sadly, I am afraid the answer for the vast majority is almost certainly not. Most people, had they even noticed them and had they even reacted in any way at all would probably have done little more than tut, pull their children closer, out of the way, kept on walking and thought no more about it. If anything, that’s all.

So there we have it and here’s my big question of the day. What was it about these men that made them so unapproachable beforehand that has now changed? What was it that meant so many people, had they seen them begging outside the Arena last week, would have just shaken their heads and crossed the road? How many would have failed to even acknowledge their existence? Far too many I’m afraid. And what’s changed? Why are we now giving them all the help we can? What has made the difference? Why is the before scenario and the after scenario so different? These guys are still homeless, still down on their luck, still in dire need of help. All that’s changed is that their kindness and humanity has been spotted and highlighted and brought to the world’s attention thanks to the events of Monday night. Nothing else, that’s it.

But surely that kindness and humanity and goodness was there before the bomb. It can’t have just suddenly appeared out of nowhere. All that’s changed is that it just wasn’t recognised due to the  predisposition we seem to have in assuming that the people who are on the street must have done something bad to deserve it.

Why do we think like that? Just because someone is homeless and destitute and begging does not make them bad and deserving of whatever has happened to them. Just because someone has somewhere nice to live and a well-paid job and plenty to eat and lovely holidays does not make them good. The truth is that the homeless guy round the corner is little more than one step away from having a job and their own home and, the guy next door with the house and car and salaried employment is just one step away from being on the streets. No-one knows what is just round the corner for any of us which could change our lives forever, one way or the or the other. ‘There for the Grace of God, go I’ has never been more apposite.

It’s a terrible indictment on our society that it’s taken this awful event for these two homeless heroes to get the help they are now getting. Why didn’t they get that help beforehand? What has actually changed? And, what about all the other homeless people in this country who weren’t there and who weren’t able to do anything to help? Are they going to miss out yet again? I would hope not. I would hope that, whenever we see someone who is down on their luck that we remember Steve and Chris, for those are their names, and try to do something, however little, to show that we care.

I, for one am certainly going to try to make sure I don’t pass by on the other side in future. A simple smile or a quick ‘hello’ won’t hurt me and it might help a homeless person feel like person again, it might even be the very thing that tips the scale and makes a real difference.

I am so happy.

Saturday was a good news day for me.

After several weeks of waiting, I finally received the two brown envelopes through the letterbox which told me how I’d done with my enforced PIP (Personal Independence Payment) application and my ESA (Employment Support Allowance) reassessment and I was successful for both Benefits.

And, further to that, a very good family friend also received her brown envelope for PIP on Sarurday as well and she’s been successful as too. Virtual High Fives all over our social media pages let me tell you – we were delerious. We both got to sleep properly for the first time in quite a while that night and we can now both breathe freely once more because we know that our finances are guaranteed for at least the next few years at any rate.

Brilliant!

But, there is something we both want to know. Why is it that the maximum award we could receive was for ten years and then we will both need to go through the full assessment procedure once again.

Why?

Why just ten years?

I have MS. I am unable to walk, work or care for myself at all, I am a wheelchair user, I cannot dress myself, wash or bathe myself, prepare my own meals or feed myself without help. I have a catheter and I spend the majority of my time stuck in bed, and I am not going to get any better. I can only ever stay the same or, as is more likely, get worse. My friend has a visual impairment. She cannot see to look after herself or her child. She also needs help with so many things on a day-to-day basis. And, guess what, she will never recover either. Just like me she will stay the same or get worse for the rest of her life. There is no magic bullet that can cure either of us. And, for both of us, this is for always. This is for ever. Our impairments are degenerative and incurable. And, thanks to our impairments, neither of us are to ever be able to work and support ourselves, however much the Government would like us too.

But, here’s the thing. Both of us have been transferred to PIP from the old Benefit, Disability Living Allowance (DLA), where we both had life-time awards. Now we are in receipt of PIP, we don’t. The old Benefit understood that neither of us would improve – ever – so we were given awards that recognised this fact. Under DLA we both recieved awards that meant we would not be pestered, made to fill in intrusive and invasive forms the size of a small novel, questioned, examined, prodded, poked and assessed as if we were making it up and were lying about the difficulties we had in our everyday lives because of our impairments. Thanks to the transfer to PIP, we will now have to go through this all over again in ten years time. And, if we survive that, ten years further on from there too. And we’re not the only people to experience this. Other people with incurable, lifelong conditions are getting the same result. Ten years is the max.

Do the boffins at the DWP know something we don’t know? Is there a cure for MS, for blindness, for so many other impairments just round the corner?  

All this ten year thing will do is cause worry, stress and countless sleepless nights for disabled people and their families and cost the Tax-payer millions. People with incurable impairments will need to be sent forms to complete that have to be printed and posted at a considerable cost to the State. People with incurable impairments will need to undergo unnecessary assessments, undertaken by paid assessors at home or at disability testing centres at a considerable cost to the State. People with incurable impairments will need to be sent letters and copies of their assessment reports telling them they have been re-awarded their Benefits that have to be printed and posted, at a considerable cost to the State.  It does not make sense.

What’s wrong with having a Life-time Award for disabled people with incurable life-long, degenerative impairments? An award that recognises that there are some disabled people who will never get better and will always need help. If people are already getting the maximum award they can get and can’t improve, what’s the point in checking to make sure that they still can’t do the things they couldn’t do ten years earlier? If there is no more money available, if the award cannot go up, if things can’t change what’s the point? People who are not going to get better don’t need to be reminded of this fact every ten years.

Once someone has been assessed, if they have been awarded the maximum available and there is no chance of anything changing apart from things getting worse then just leave it alone. Stop the endless form-filling, stop the endless prodding, poking and assessing, stop the printing and posting, stop the endless stream of brown envelopes, stop the stress, stop the worry. It benefits no-one, it saves nothing and it’s all  done at considerable cost to the Taxpayer.

I am angry.

Yet again, I am angry and yet again it is our not-so-noble Prime Minister and her Tory cohorts who have angered me. What a surprise eh? Who would have guessed it.

So, what has Mrs May done his time to rattle my cage?

Well, it’s not hard but, amongst a plethora of other things, the thing that has really riled me this time is the TV interview that she gave, with her husband Philip, on the BBC1 early evening chat show, ‘The One Show’ on Tuesday. I freely admit that I didn’t watch all of it. I couldn’t but the little I did watch made me seethe. I lasted for a total of about five fist-clenching, teeth-grinding minutes before I was forced to change channel. Not because I desperately wanted to watch the programme I switched to, no, I just couldn’t stand to watch any more of the cringe-worthy, sexist clap-trap that was being spouted by our leader and her lap-dog of a husband.

Totally disgusting tripe.

And now, today, the spouse of another Tory grandee is reiterating the self-same nonsense in an article in a Tory-loving daily newspaper. Argh!!!!! Horrible, revolting, mid-20th-century, sexist garbage.

But, what, I hear you ask, was it?

Well, on Tuesday night, Mrs and Mr May, when talking about their day-to-day lives and trying to sound as if they lived lives that are the same as everyone else’s lives, started talking about the household chores that they each undertook. Mr May said that, just like everyone else, he took the bins out. The PM was asked by the interviewer if she did this too and that’s when she made me angry. She told the nation that no, she didn’t because there were ‘Boy jobs and Girl jobs and taking the bins out was a Boy job.’ And now, Sarah Vine is saying the exact same thing. She is saying that the secret to a lasting, loving relationship is for there to be ‘Girl jobs’ and ‘Boy-jobs’.

Excuse me?

Boy jobs and Girl jobs? Which decade do these women live in? Why is taking the bin out a so-called Boy job? Because girls can’t do it because it will mess up their pretty frocks or grubby up their delicate hands? Balderdash. I thought that attitude went out in the nineteen sixties and seventies, almost half a century ago. The Sexual Revolution, Sexual Liberation, is something that happened in the past, something that should rightly be consigned to the history books and Wikipedia, not something we should still be fighting for now, in the twenty-first century.

And what about ‘Girl-jobs? What are they exactly? Should women be found solely in the kitchen, doing the housework or looking after the kids whilst the men do the difficult things such as putting up shelves, manufacturing flat-pack furniture and disposing of household waste. Is this what Mrs May and Ms Vine are saying? Well that’s what it looks like to me. The Tories accuse Corbyn and the Labour Party of trying to take this country back to a previous age but they’re trying to do exactly the same thing themselves.

What about women who live alone or, live in an all female household? What are they supposed to do? Live in filth because they are unable to take a bin-bag to the wheely-bin outside, survive without their flat-pack wardrobe and pile all their things on the floor because they have insufficient shelving? Ring for help from an ex-partner, husband or expensive handyman service? Ask the nearest male they can find such as a neighbour or passer-by for help? I don’t think so. Unless Mrs May or Ms Vine have a better idea, many women will just have to get on with it and do it themselves.

And this throw-away comment has made me wonder what the Department of Work and Pensions would have to say on the subject. All over the country there are men and women who have to document their job-search activities if they are to receive their meagre weekly or fortnightly Welfare Benefits payments. When someone applies for Job-Seekers Allowance they have to sign a pledge or contract that stipulates that they will apply for any suitable jobs that come up. They have to document all their efforts which then have to be shown to the people at the Jobcentre every time they sign on. And then, if their efforts to find work are deemed to be insufficient and they don’t have a valid reason for their failure to get a job, they are sanctioned and lose benefits for a shorter or longer period of time until the can show they are trying harder. I wonder what would happen if a job-seeker told their employment adviser at the Job-Centre that the reason they had not found work was that yes, there was work available but that work was for the wrong gender. Would that ever be acceptable?  Somehow, I don’t think so. Anyone who tried that trick would swiftly find themselves with no money and queuing outside their nearest foodbank.

When will Mrs May and Ms Vine join Mr Corbyn, Mr Farron, Ms Sturgeon, Ms Wood et al in the real world and not remain firmly stuck in the past. Boy-jobs and Girl-jobs have been and gone and, in my opinion, good riddance to them. Household tasks are just that, tasks. Tasks that can be done by anyone in the household, regardless of gender, not girl-jobs and boy-jobs, just boring, mundane, everyone tasks.   

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.