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Disability

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.

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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.    

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’?

    

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.

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?