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Well, that was soul destroying.

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

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

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

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

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

WE JUST CAN’T, OK?

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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…

Yesterday, there was an article in one of the more respected daily newspapers which stated that a survey in America had identified six medical conditions which had been rated, by hospitalised patients, as worse than death.

Really?

Worse than death?

Had any of the respondents to the survey actually experienced any of these conditions long term so they could make an informed decision or were they just guessing? Almost certainly not. I think that most people were, in fact, guessing.

I took a look at the list and, of the six conditions listed, I have experienced four of them and have lived with two on a daily basis for several years. Let me tell you guys, I reckon death would be far worse. Sure, these conditions are all things that can make life harder, a lot harder, but death would definitely be worse.

Death is not something you can learn to live with.

Death is not something you can get better from.

With death, you don’t get another try.

Death is the very end.

Finito.

I think the major problem we have here is fear. Fear of the unknown. For a start, all the people who took part in the survey were hospital in-patients. They were all people who were probably scared and worried and ill. According to the article, they were people with long-term conditions such as malignant cancer and heart failure. These were people who were scared and frightened by what was already happening to them, then they were given a list of other conditions and asked if a diagnosis with any of these would tip them over the edge. These people were sick and at a cross-roads, they were presented with a list of nasties and asked if they had a choice between them and death which would they chose.

Well, that’s not fair.

In those circumstances it is hardly surprising that death won. These people would have heard of all of these conditions, and may even know others who have experienced them, but they would have already been scared so asking a question like this, at that time, was wrong. Sure, the conditions listed are horrible and, for someone with no prior experience of a long-term, life changing medical condition, scarey, but, if these conditions are well managed and people receive proper treatment and care, there is not nearly as much to be scared of as you might think. Having to deal with any of the conditions listed can be difficult and, in some instances, unpleasant but, in my opinion, death would be worse. Furthermore, as this survey was conducted in the USA where people don’t have access to free, NHS care and participants would have to pay for treatment and care, this could have coloured their responses. Taking that into account however, of the six listed there is only one, ‘being confused all the time’ which actually would scare me. Even then, I’m still not sure if I would chose death as the way out. The others are, as far as I am concerned, all copable with. In fact, I have friends and acquaintances who do cope with them on a daily basis and they all have rounded and fulfilling lives. They are not sitting back longing for the Grim Reaper to call, they are out having fun and enjoying themselves.

I think this article is another attempt at promoting the thorny issue of Assisted Suicide. Running a story about what happens in another country is not right unless it emphasises the fact that it is another country and that things are different there. I’m not saying that people don’t have a right to choose, they do, but they need to know death is not the only choice available and what the situation is here. Sure, people should be able to go for the death option if that’s what they really want but they need to be given full, accurate information about other options available to them so they can make an informed choice and that doesn’t always happen and it should.

I hope that the newspaper in question runs another story about Britain in what happens here but I’m not expecting miracles. Balanced reporting would be nice for once but it probably won’t happen.

It’s horrible.

Yesterday saw a complete and utter tragedy in Japan when a man decided to attack and slaughter nineteen severely disabled people in a care facility outside Tokyo for the despicable crime of – being disabled. That was it, they were disabled. A cowardly attack by what sounds like a disgruntled employee, perpetrated against people who were unable to defend themselves against his blows and slashes and murderous assault purely because, to his eyes, they were not worthy of life. He attacked and mutilated and killed at least nineteen people in a frenzied knife attack before going to a police station to hand himself in, allegedly stating as he did so: “It is better that disabled people disappear.”

Why?

What was it about the disabled people living in this facility that he felt entitled him to snuff them out? Why did he decide that these people have no right to exist? What had these people done that was so terrible? Was it because they had been born in a less than ‘perfect’ body? Could it have been because he deemed them to be unable to function ‘normally’ in society? What gave him the right to play judge and jury and make that decision. We will probably never know.

But that’s not all, there’s more.

Earlier this year he wrote a letter to the Speaker of the lower house of Japan’s parliament in which he said that he felt it would be better if all severely disabled people were, with the agreement of their families,  euthanised if it was proven to be difficult for that person “to carry out household and social activities”. There was no description given of what those activities might be or what differentiated a disabled person from a severely disabled person, just that these people, whoever they might be, were not worthy of life and should, therefore, die. He even volunteered to carry out the killings himself and detailed how he would accomplish this atrocity if given the opportunity.

As far as I am concerned this is just the tip of a hate filled iceberg. Society is in meltdown. Disabled people are being hurt, disabled people are being abused, disabled people are dying because of it. Disabled people are  being targeted for no other reason than for just being who they are. This fear and hatred is prevalent from the lowest to the highest echelons of society and it’s getting worse. Only this week there was a report in the press about a middle-aged businessman who, apparently, decided, that bullying a disabled person because he himself had been made to queue to use a toilet was all right. Earlier this year, Republican Presidential candidate Donald Trump felt that it was acceptable to mock a disabled reporter because of their impairment without any obvious repercussions for his actions. In November 2015 it was reported that incidents of disability hate crime in the UK had increased by forty-one percent over the previous year. Name calling, harassment, physical and mental assault for no other reason than a person’s medical condition. Well, in my opinion this is not right and cannot be allowed to continue. What will it take for the hatred to stop? What has happened to make society so against people who are not the same, people who are different in some way. People who are different because of an illness, injury or accident of birth. Something that is out of the control of the person that is being abused.

We need to show that we have had enough and that all this unwarranted hostility and intolerance has to stop. People should learn to respect diversity and value their fellow men and women for what and who they are, regardless of their abilities or disabilities. We all have a contribution we can make, no matter how large or how small, how monumental or seemingly insignificant it may be.

We must make sure we all put our collective feet down firmly and just say ‘NO!’  

What an eventful political week.

Who could have predicted the momentous turn of events we have just witnessed only one, short month ago. Not me, for one. Saying goodbye to David Cameron and his team and hello to Theresa May and her’s is going to change so many things, long-term, for us all.

But, what do I as a disabled person, want to see delivered by the new regime?

Well, for a kick off I want to see an end to all Welfare Benefits sanctions, in particular sanctions which mean that disabled people are left without sufficient money to pay for food and medication and rent and energy costs and transport costs. I would like to see proper Welfare Benefits for disabled people where we didn’t have to continually justify our existence or prove how ill we are at every turn. Applying for Disability Benefits and attending never-ending face-to-face assessments or tribunals is soul-destroying, mentally traumatic and largely unnecessary. I want to see an end to people being punished for the crime of being too sick to work and being awarded benefit levels that allow us to actually live not just subsist. Just because we are either born or become too ill to earn our own livings does not mean we should always be put at the bottom of the heap or made to feel as if we are a burden on our families and society through no fault of our own.

I would like to see physically disabled people being able to access proper equipment based on what we want not what the government deem us as needing. The cheapest option is not always the best option in the long term. Giving us the bare minimum could be counterproductive. Spending a bit more to help us now may well mean less needs to be spent in the long term because our medical conditions might not deteriorate as fast, if at all because we are not having to struggle all the time for everything. There needs to be better provision of proper Mental health care and access to inpatient and outpatient treatment for as long as it needed, not a one size fits all system. Everyone is different and this needs to be recognised. There should also be mandatory mental health first aid training for anyone working with young or vulnerable people and for both physically and mentally disabled people, proper support for the NHS. I would like to see more funding made available for medical research which may lead to a better understanding of disabling conditions, better treatments and possible cures.

Another important consideration for many disabled people is care. I would like to see more money put into support for family carers, support for young carers. There should be mandatory respite care, for all disabled people of at least two weeks, annually allowing both disabled people and their carers a break where they can relax, safe in the knowledge that needs will be met. I would like to see this combined with increased level of social care. I would like to see family carers paid a living wage rather than just receiving the paucity which is Carer’s Allowance. I would like to see proper recognition of the value of family carers and how much money they save the nation. I would also like to see a proper rate of pay for all social carers. Without them and without family carers many more disabled people would need residential care or hospitalisation at a far greater cost to Social Services and NHS budgets.

And then there is transport and transportation costs. I would like to see a version of Taxicard available nationwide. I would like to see more investment in a fully accessible transport network. I would like to see much wider provision of wheelchair accessible transport such as Dial-a-Ride services and wheelchair accessible mini-cabs. Blue badges need to be universal for hospital carparks. There should be free parking or a refund of reasonable travel costs for relatives of people who are long-term in patients in hospitals.

These are only my initial thoughts and things that affect me personally the most but there are so many other things I feel that our new Prime Minister and her Cabinet should tackle that could benefit the lives of disabled and older people nationwide. Education, Transport, Access to Justice, Employment, the list is never ending.

Am I hopeful that we will see any of this?

Frankly, no.

A disabled friend of mine posted a very thought provoking comment in one of my many social groups on Facebook yesterday. Something that has got me thinking big-time.

She asked, what sounds on first reading, to be a pretty straightforward question but which is, in reality, a question that has, for many of us who live our lives with freedom-limiting impairments and illnesses, a pretty complicated answer.

What she wants to know is whether she’s the only disabled person who feels really jealous when she hears about non-disabled people getting to do things she can’t do and go places that she can’t go due to her impairment or if more if us feel that way too.

Well, as far as I am concerned, the answer is a resounding, YES!

Yes, I do feel jealous and resentful, really jealous and resentful, all the time.

Don’t get me wrong, most of the time I’m pretty contented and happy with my life as it is but, just sometimes, I’d really like to spice it up a bit and do some of the things I used to love doing before I got sick. Not so long ago I had a very full and eventful life despite my MS but now, thanks to my worsening condition and to my infected pressure sores, my world has shrunk enormously in hte past two years and I am restricted to a small, single bed sized space in my house, the majority of the time. Sure, I do get get up to go out occasionally, but most of my life is now spent restricted to the four walls of my living room with only my computer, my TV, my phone, my books, my family, my carers, District nurses and doctors and some long-suffering friends to relieve the boredom.  

It used to be so different. I had a good job doing something I loved, earnt a very decent salary rather than having to rely on Welfare Benefits for every penny, went out when I wanted to, spent time with my friends and relatives because I felt like it, got to plan for my holidays and my free time, visited fascinating and interesting places locally and further afield, was a lady who lunched at least once a week, did what I wanted to do whenever I wanted to do it and now, I can’t.

And it sucks.

One of my children has just had a week away, going to a friend’s wedding and then having a lovely holiday exploring Scotland and having fun, the other is planning for her next trip away and visiting friends for the weekend. In complete contrast I get to do nothing more interesting than change channel on the TV and hope there’s a film on I haven’t seen before. My children get to go out and about, go shopping, visit museums and art galleries and the theatre and go to the pictures, go to the pub, do fun stuff and I can’t. I get to experience it all second-hand but, in reality, I’m stuck here doing nothing most of the time and it’s not fair. Don’t get me wrong, I have some really lovely friends who come round to visit, bearing yummy treats to share or who phone me for a long gossip about whatever they, and their families, have been doing but it’s not the same thing. In a lot of ways I don’t feel like I am taking part in real life at all, I feel like I’m merely observing it from the sidelines. I acknowledge that is probably not the case but that’s what it feels like most of the time.

Maybe I would feel differently if I had been born with my impairment and had never experienced a non-disabled lifestyle but, as things stand I don’t know. I can really speak only from my own viewpoint and so, yes, I am very jealous and very envious of all the things other people can do that I am unable to do any longer. I would give anything to be able to feel sand between my toes once more. I would pay whatever I could to be able to walk alone through the woods with my dog, listening to the birds above me and watching butterflies and bees flitting from flower to flower. To be able to go with my friends to shows and gigs without having to consider accessibility or what time I had to be home for my carers to put me back in bed again would be priceless but, unless a miraculous cure is found for me tomorrow it’s not going to happen any time soon, if ever again. I so miss my old life and there are times when I want it back more than anything else but that’s not likely to happen.

I’m pretty sure I’m stuck with what I’ve got now for the rest of my life so I will just have to suck it up and make the best of it. It’s time for others to have fun now and I will just look on and share what they are doing in my secret dream world. That is something I will always have, whatever happens, it’s special and it’s all mine.