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.

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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.    

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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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.

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’?

    

So, yet again we have a Tory Minister saying something REALLY stupid and angering another group of people from amongst their core supporters. It makes you wonder if they are trying to make the other Parties lives easier for them. Do they care about the people who voted for them? These days it’s looking more and more as if they don’t.

So, who has been saying what and about whom on this occasion?

Who is being ridiculous this time?

Well, it’s an MP called Guy Opperman, talking about women and pensions.

He seems to think that older women, who are being disadvantaged by changes to the age that State pensions start being paid, could mitigate their financial loses by taking up Apprenticeship opportunities instead.

What foolishness is this? Do some of these Ministers just open their mouths and let the words fall out without thinking about what they’re saying first? It certainly seems to be what’s happening.

Just to explain the situation to people who may not know what I’m rabbiting on about this time, changes are being made to British Pension regulations which are designed to equalise when men and women become entitled to their State Pension. It used to be that women received their Pension from the age of 60 whilst men had to wait until they were 65. And this is what’s changing. The State pension age for women is being raised to 65 so that it’s the same for both genders. And there is no real argument about the fairness of this idea. In my opinion it should be the same for both genders. But there is an issue with how it is being implemented.

A group called WASPI (Women Against State Pension Inequality) argues that for women born in the 1950s having no transitional arrangement is unfair and wrong. These women’s pension arrangements and retirement plans and options are being changed without any thought as to how their plans are being changed. Their issue is with the unfair way the changes were implemented – with little or no personal notice (1995/2011 Pension Acts), faster than promised (2011 Pension Act), and with no time to make alternative plans. Retirement plans have been shattered with devastating consequences.​ And, Mr Opperman seems to think that women who are being affected adversely by these changes could take up apprenticeships to cover any financial losses they may experience.

I have two things to say about this idea – it’s unfair and it’s unworkable.

It’s unfair because these women have always been told and have believed that they will get to retire, on a full pension, when they are 60 and they have planned for this throughout their working lives. Surely a fairer way to do things would be to have a transitional period? And it’s also unfair on the young people, for whom apprenticeships were originally envisaged, to have these opportunities potentially taken from them by older women. It does not seem right.

But, the unworkable thing is what concerns me more. Exactly how many employers are going to want to take on an apprentice who is scheduled to retire either during or shortly after completing that programme? How many employers are going to want to spend any money whatsoever on training people up who will be leaving almost immediately? And how will women being paid at the pay rate for apprentices help anyway? Has Mr Opperman ever looked at how much money  people would get? Currently, apprentices over 19 and in their first year get £3.50 per hour. £140 for a 40 hour week. Once tax and NI is taken out, how would that mitigate ANYONE’S loses?

I think three things need to happen and need to happen fast. Firstly some sort of transitional arrangement needs to be put in place for the WASPI women. The rug should not be pulled out from under them without something sensible being sorted out. Secondly, and as a byproduct of this discussion,, the Government really does need to look at the rate of pay for all apprentices. £3.50 p/h is little more than save labour. Granted, apprentices need to be trained and, certainly initially, may not be as valuable to the workforce for any business, but wouldn’t a graduated pay scale be better? £3.50 or something similar to start with when a new apprentice starts and learns the basics but, once they have been around for a while, surely they are making money for their employer through the work they do? Surely someone who is halfway through should get some financial recognition for the work they are doing? Employers are earning profits from apprentices and the apprentices are earning peanut. It does not seem right. And thirdly, Government Ministers need to learn to think first before they speak so as not to come up with stupid pronouncements that upset some members of the electorate and serve no useful purpose but to make them appear to be ill informed and cruel. Think first, speak later really should be a maxim all politicians need to remember and consider at all times and should be point one on any briefing paper or induction pack they get when they enter the House for the first time.

Think first, speak later – you know it makes sense.