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Fluctuating Conditions

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.

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 don’t want to sound rude, resentful and ungrateful but I am getting completely fed up with the loss of dignity, privacy, autonomy and spontaneity that goes along with being a disabled person, reliant on homecare and personal assistants for my every need. It’s horrible and I hate it so much. I would give so much to be able to have a lie-in because I feel like it, not think about what I’m going to have for my lunch until I’m actually hungry, do something without having to plan it days in advance and have a wash and get dressed without an audience, but I can’t. Just for once, I’d like to be able to be left alone and to chose to do things, because I want to do them, without anyone else being involved, but it’s not going to happen.

After a year of frustration, with agency staff looking after me, I now have a team of lovely carers, whom I employ myself, who come in three times a day, and they do everything for me. Which, don’t get me wrong, is nice, but, just for once, I’d like them, if to were possible, to just go away and leave me alone. They come into the house first thing in the morning, often when I am still asleep, and wake me up, even if I don’t want to be awake. They bustle around, opening and shutting doors, making idle small-talk and turning on the lights. They go to the bathroom, get a big bowl full of water and then strip the bedclothes and my pyjamas off me, wash me and give me a bed-bath. Whilst they do this, and whilst I am still half asleep, trying desperately to get back into the lovely dream I was having only minutes before they came, they ask me what I want for my breakfast and for my lunch and then one of them goes to fetch it. I’m hardly fit for anything before I’ve had my morning coffee but I have to go through the morning routine every day before I even get a glass of water. Forty-five minutes of frenzied activity every morning and then, just a quickly as it started,  I’m on my own until it all happens in reverse in the evening when they come to get me ready for bed. And this is my life. No frivolous conversation about what was on the TV last night, no questions about what I did the day before, no talk about what I’m going to be doing next month or next year, or my plans for the future, just the same thing, day in, day out. No variation. Well, I am completely fed up with being poked, prodded, turned, talked to, flustered and disturbed all the time. I would like to be able to wake up when I want to wake up because I feel like it, have a wash in a bathroom with the door closed, without an audience, change my mind about what I’m going to wear when I’m halfway through getting dressed because I don’t want to wear whatever I got out of the wardrobe after all. I want to be able to go to the kitchen and choose what I want to eat for my breakfast by looking in the cupboards to see what’s there rather than having to choose from the supermarket delivery note. I want to get to look out of the window and THEN decide if I’m going out or staying in rather than make all my plans for the day in advance. I want to be able to do what most people do and live a ‘normal’ life. I want to make simple, little decisions about my life, on my own, without comment, but I can’t. Don’t get me wrong, I really do appreciate the dedication of all the people who help me on a day-to-day basis but, just for once, I want it to be like the old days.

Having the autonomy to do my own thing was never something I truly appreciated when I had it but, now that I don’t, I really want it back. Being able to do something spontaneously was never something I really thought about but now I can’t be spontaneous I really miss it. In the past I have just gone to the station and caught a train to the other side of the country because I felt like it, now I can’t even change my mind about my sandwich filling without having to ask someone else to deal with it for me. Privacy when it came to being seen naked or in my underwear was never something that really bothered me. Changing rooms in clothing stores and leisure centres didn’t bother me and if someone wanted to look at me or stare then so be it. Once you have given birth, with an audience of doctors, nurses and midwives, you get to realise your body is not really your own. Even so, that was years ago and I thought it was something I could put behind me but no, it’s back and it’s not likely to go away now.

I so wish I could just be me again and have my old life back but, unless someone makes a medical breakthrough and finds a cure for me, I’m going to face the fact it’s not going to happen. I am just going to have to grit my teeth and get used to being the new me. It’s not the life I envisaged for myself when I was younger or the life I would have chosen but it is the life I’ve now got. Spontaneity, privacy and dignity as I knew them are now for other people, not for me. My life is now different and there are many other people who are involved in it so, I suppose, I had better knuckle down and get on with it.

Roll-on the future, let’s see what happens next.

Today I woke up in a very reflective mood.

Disability, MS and me. I have spent the whole day thinking about it and trying to make some sense of it. Now it’s time to share those thoughts.

Here goes……

When I was first told I had Multiple Sclerosis, over thirty years ago, I was terrified. I was twenty-four years old, straight out of university, just starting out on being a proper grown-up, with my whole life ahead of me. Then I was hit by a medical bombshell. My world, the world as I knew it, collapsed around me. MS was something I knew very little about. I had vaguely heard of it but, what it meant for me, was a complete unknown. The only thing I really knew was that there had been a woman, in the village where I had grown up, who’d had it. She couldn’t walk, she didn’t go out much, she had used a wheelchair and she had died. That was it.

And now I had it too. Here it was, slapping me in the face. Suddenly it was part of me. It was real. All too real. My life, my future.

What it meant was something I would have to consider, and fast.

Great.

Initially I spent a fair bit of time feeling very sorry for myself. I asked my long-suffering GP a whole load of self-pitying questions and then, as the internet wasn’t really a thing thirty years ago, I went to the library to do some research. What was this thing that had got me in it’s claws and what could I do about it? The answer appeared to be, not a lot. Unlike today, I didn’t find any ‘uplifting’ biographies written by fellow MSers or friendly support groups to pass on advice and information about dealing with the disease, just dry medical tomes which told me little about what to do and how to live, just what was probably in store for me further on down the line and it wasn’t very cheerful.

In other words, not a lot of help.

So that was when I made a decision. I was going to carry on carrying on. That was what my beloved Grandfather would have told me to do so that was what I would do. What choice did I have? Either I could get on with my life and fight or I could give up and despair.

And that wasn’t me.

Some people may have said that I was burying my head, not being realistic and just hiding but I don’t think I was. I was a young woman with a whole load of life ahead of me and I was going to do my best to enjoy it.

I moved down to London, found a job, had a family and carried on. At first, and for several years, the MS didn’t affect me much. Sure, over time my walking became affected and things got a little harder but I coped. Then I was offered and accepted a temporary job with a local disability group. And that was when my new life really started. I got to meet other people with a host of different impairments, I learnt about the world of disabled people, I found out about all the support groups that were available and I got involved with proper activism for the first time.

Over the subsequent twenty years, whilst the MS got worse, my life has got better and better. I have been involved with some incredible things. I have been to some fantastic places, I have made some very special friends that I would never have got to know otherwise. I have done a post-graduate Law qualification, I have started writing and, through it all, I’ve enjoyed myself and had a good time. All things I might not have done if I hadn’t become become disabled and been given the opportunity and the tools to learn to live with it.

The life I have now is very different from the life I might have had if I hadn’t become ill but, whether I would have enjoyed it as much if it hadn’t happened, is something I will never know. All I can truly say is, thanks to my MS I have become the person I am today and I am grateful for it.

I live it, I feel it, I own it. Bring it on!

 

I had such a lovely time last week. I got to be a grown-up, which doesn’t happen very often, and it was so wonderful!

Confused? Let me explain.

As a severely disabled person there are many things I cannot do for myself. I can’t walk. I can’t get dressed by myself. I can’t wash myself. I can’t make a meal. I can’t even make myself a cup of tea if I want one. I have to rely on someone else to do everything for me.

Now, before my medical condition deteriorated slowly and inexorably in 2014, I was perfectly capable of doing all that needed to be done either on my own or, if necessary, with the assistance of my, now adult, children. I went out to work full-time during the week, looked after my own family, visited friends in the evening, was a lady who lunched at the weekend, attended social events as and when I wanted to, did my own shopping, stayed up late if I felt like it, had a lie-in at the weekend and got to go away on short breaks if I fancied it. In other words, I had a lifestyle that was comparable with the lifestyles of my peers and the majority of the adult population of this country and most of the rest of the world. I was an adult who got to pick and choose what I wanted to do and I did adult things. In my family we call that adulting. I spent my life adulting.   

Then I got sicker and things changed. The Multiple Sclerosis which has been part of my life for the past thirty years decided it was going to throw a spanner in the works and deteriorate. I wound up in hospital and, although I am a lot better than I was, things have had to change. For the last eighteen months, this has meant that I have had to have carers, or, as many disabled people prefer to call them, Personal Assistants. PAs. PAs coming into my home to attend to just about everything I need, every single day. Quite hard to come to terms with for an independent woman such as myself but I don’t have an option. It is either PAs in my own house or live in residential accommodation away from my family with no independence whatsoever. No choice really, so PAs it has to be.

And that’s the issue. For most of those eighteen months my PAs have come through an agency, paid for by Social Services. I have had little or no control over the care that I receive. I have not been able to say what I wanted done, when I wanted it done or how I wanted it done. I have had no choice at all. My ‘ladies’, as we call them, show up every morning at 9am to wash me and get me ready for the day, make me breakfast and do a small amount of simple housework if they have the time. I have two ladies, for forty-five minutes each, to do everything. At lunchtime I get thirty minutes care from two more ladies when they make me something to eat and get me another cuppa and then, in the evening, another two ladies come at the horrifyingly late hour of 7pm, for forty five minutes each, to get me ready for the night and, if my children are out, warm up a ready meal for my supper. And that, until recently, was it. With a little careful negotiation I was able to make bedtime as late as, shock, horror, 8.30pm but only once a month, if I was lucky, as a special treat. Then about two months ago, I managed to get onto something called Direct Payments whereby Social Services give the money they are prepared to spend on my care package to me and I get to employ my own PAs to come when I want, and do what I want, and everything I feel is necessary, at a time that suits me.

And I am loving it!

I have got my life back! I get to choose who comes, when they come and what they do when they are here. I don’t get to choose how long they are here for, Social Services still dictate how much time I get, but not when that time has to be. And this means that, if I want to stay out past around six-thirty in the evening, I can!

So, last Thursday, I did! I went out with some friends, to the pub, for food, alcohol, conversation and fun and I didn’t have to get home for my evening care visit until the startlingly late hour, for me anyway, of ten-thirty. No watch-checking, no worrying, no rushing, no leaving the party long before the end, no having to act like a small child or a teenager with a curfew. I got to do some adulting again and I loved it. I have not enjoyed myself quite so much in a very long time.

And, now that I have discovered that life can be fun again, I want more. Adulting, in future, will have to have a much greater role in my life. I already have my next night out planned and I’ve only got a couple of weeks to go. After eighteen months of being treated like a very small child I can wait. But not for long.

Life is for living and I want to do some more.  

Long live adulting.  

Regular readers of my blogs will know, without doubt, of my addiction to social media and how often the posts I read on Facebook and Twitter make me angry and inspire my writing. And today is no exception to the rule. Today it is a post on Facebook that has rattled my cage and made me want to write again.

The thoughtless comment I read this morning was yet another post about ‘benefit scroungers’ and fake disabled people. Someone was going on about all the people who are in receipt of PIP (Personal Independence Payments) and it’s predecessor, Disability Living Allowance, who ‘aren’t really disabled and entitled to it’ are they. The fake disabled person, as far as this poster was concerned, was a woman who volunteers in a local charity shop twice a week who gets PIP and has learning difficulties. The point, as far as the poster was concerned anyway, was that learning difficulties wasn’t a proper disability and that PIP was only for people who couldn’t walk or for blind people wasn’t it? No understanding whatsoever. No attempt, that I could see, of any research being done about the payments, just a declaration that the woman in question was a scrounger and a fraud because there was no special something which gave a clue as to her medical diagnosis. Not only that, but at least two responders had suggested that the OP (original poster) should report the woman to the DWP for fraud, especially as she was volunteering, which meant she could obviously work, so shouldn’t be getting any benefits at all should she.

Why is it that the less clued-up general public seems to think that all disabled people must have some sort of sign or badge which marks them out as having an impairment? Why is there little or no understanding for all the thousands of people who have conditions such as dyslexia and dyspraxia, autism, mental health difficulties, diabetes or epilepsy? How about all the people whose impairments have little or no outward manifestation. What about those of us who do not have an aid such as a white stick, a zimmer frame or a wheelchair that means we’re lying. Some of us have nothing at all that marks us out in a crowd. Someone with learning difficulties may need another person with them when they go out to help them get from A to B safely. Someone with diagnosed with rheumatoid arthritis in their hands might be able to walk but might not be able to hold a pen or pencil so may need a writing aid. Someone in the earlier stages of Multiple Sclerosis or Motor Neurone Disease may need to use cabs to get around but they can still walk a bit. Just because they have no visible sign of an impairment does not make them any less disabled that someone with a guide dog or a mobility scooter.    

And, where does it say that disabled people can’t volunteer or go out to work? To start with, PIP and DLA are welfare payments made to disabled people to help them with the extra costs their impairments cause. DLA and PIP were designed to help put disabled people onto a level playing field with their non-disabled compatriots. They are not a payments that are based on our diagnoses, they are based on our need for some help with our day to day lives. We don’t all have something that marks us out from the rest, a label which says ‘genuinely disabled’ hanging round our necks. More often than not there is nothing special about us to distinguish us at all.  And this leads on to the second myth my original poster and secondary responders were expounding, that DLA and PIP cannot be paid to disabled people who are in work. The extra costs disabled people can incur don’t go away with the arrival of a pay cheque. Someone who is unable to use public transport and has to catch a cab everywhere they go when they are unemployed is still going to have to call a cab to go places after they get a job. They will not, magically, get better the minute they sign an employment contract. Miracle cures don’t work like that or we would all be out there hammering on the doors of recruitment agencies begging for work.

Genuine disabled people don’t wear badges and there is nothing that says that disabled benefit claimants don’t need a little bit extra from public funds to put them on a level playing field, even if they do work. People who post comments on Social Media really do need to think twice and do a bit of research before they hit the enter key. What, at first glance, may look to be unfair usually isn’t. Disabled People are not money grabbing crooks, we’re just people who are trying to make the best of the difficult situation we have found ourselves in, often through no fault of our own. Disparaging and thoughtless comments and social media posts don’t help. If you’re not sure, do a little research, you may learn something and void hurting someone who has done nothing to hurt you. Most people aren’t crooks and should be treated with consideration, however much some social media users may like to believe they are.