Category: Health

Moving the Goalposts

My card games have come up with a new wrinkle. You’ll tell me it’s not new and I’m just unobservant. I get extra points for doing odd things. For instance, 50 gold coins for clearing 8 spades in a row, random or what? That appeared today after I happen to clear 8 spades in a row. They are fitting the scoring to my achievements: moving the goalposts. Moving goalposts to fit your achievements is not a bad idea when you are limited/disabled.

Before I was ill, I hardly ever sat down, hated doing nothing. I hardly ever watched TV. I was always up and about, doing major DIY projects, re-building car engines, walking great distances, swimming, exploring, etc. When I became ill the hardest thing was being forced to stop. I had to move the goal posts. For me, writing has been a life changer. Something that occupies my brain and uses my imagination. I have always loved writing, but never sat still long enough to do much of it. Instead of focussing of the loss of my mobility, I focus on writing.

If you have recently had a limitation dropped upon you; and it can feel like that: As if a great weight has been dropped upon you. If that has happened to you, then my advice is this:

1/ Take a bit of time, you will need to grieve; but don’t stay in that grief; don’t wallow.

2/ After taking that time, grieving about the loss (I know that to a degree, that is ongoing) look at what you can do, not what you can’t.

3/ Think of practical or mental things to do. Hobbies you have long since let go of, maybe from childhood. Things you always wanted to do, but lacked time for. The very first thing I did was lay in bed listening to podcasts (you might prefer music, or audio books.) Then I read all the classic books that I had always wanted to read.

Remember, that is just what I did. You will have your own ideas. From reading to puzzle books, watching every movie you wanted to see; to listening to audio books. If your hands work well enough you might do jigsaws or knitting. Perhaps a craft or model making (these also depend on dexterity and sight, find what works for where you are.) If your brain is up to it you might study. I am only throwing ideas around.

The OU (Open University) or an equivalent in your country, are brilliant if you are up to studying. The OU make adaptations for disabled people, both in time allowance and physical needs. Maybe you could do that course you always wanted. It’s online, done at home, from your bed if needed.

Remember, the important thing is to adjust your perspective, your expectation, your goals.

I have already said that we need time to acknowledge our loss and grieve. But after that, no amount of shouting, screaming, saying ‘it’s unfair,’ or ‘why me?’ will make any difference to our lot. It just makes you feel worse.

Put the goal post somewhere else and score a goal.

Move the winning line and cross it.

Set up that target in a place you are aiming and hit the bullseye.

But this is not a contest, the goals and winning I am talking about are not competing against anyone else. You are just achieving something, taking back control. The sense of hopelessness and failing that we can go through with the disability/limitation of illness or following life changing accidents knock us flat. It can give us a sense of powerlessness.

I am saying this: you can take control again. Even if it is an activity that is totally in your head. No physical movement at all. I began this process before I could even leave my bed, by listening to podcasts, then music. I moved the goal posts. Achievement was no longer how far I could walk. Nor what I could physically do. I changed the goal to one I could achieve. Make those goals achievable and you have taken control again.

Any achievement can be a mountain climbed when you are seriously ill or disabled.

Each small step is a marathon completed.

Move the finish line and feel the sense of being back in control.

I know that illness robs us of a sense of being in control.

These small steps help us in feeling empowerment and purpose.

I have written this last series of blogs because I believe they are universally true. I hope they can be of help to some.

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Waves of Change

I often hear people ask questions about how to cope once they are stuck at home due to illness, accident or disability.

First, briefly you need to know that I understand. I live a life of limitation. Even though we now live in an accessible home, I still spend a massive amount of time limited to my bed. Pain dominates my days. I really do understand. I have learnt a thing or two about coping over the years. These are the things that helped me.

The first thing to say is that it’s OK to grieve over loss. In fact it is healthy to do so. Acknowledging our loss is an important step in moving forward. But staying in that grief and sadness forever is not healthy or helpful. So I have found that I needed to tackle my attitude.

Attitude is the biggest key to how we feel. Look at it this way, when your life falls apart and everything changes you still have choice about how you think. You still have some control. You have a choice of how you look at things. You can control how you think about what has happened. I made a conscious decision to be positive. I do not feel sorry for myself. That way lies despair and hopelessness. Every day when I wake up I have that choice. I have found it is not a one time thing. When I am hit anew by pain. When I feel afresh my limitations. I have to remind myself:

I am NOT going to give up.

I am NOT going to feel sorry for myself.

I am NOT going to focus on the negative.

Instead I DO focus on the positive, however small that is. (Warm blankets, a glass of water, programmes I enjoy on TV, friendly faces… whatever it is)

I DO keep going.

I DO feel joy. Joy is the result of all the other things I outlined above.

If you rail and rant and fight against the limitations that only leads to frustration and pain. I liken it to the way you deal with a massive wave in the sea. Can you picture that?

If you try and stand up when a giant wave comes at you, then you get knocked over and winded. If you float over it and go with it then you will not be flattened or winded, you will be lifted up by it and float upwards. Go with the difficulty rather than fight it. Allow new ways of coping to naturally show themselves after you have had the old ones washed away. They say change is painful, yes it is. But it is even more painful when you resist it. It’s easier to get through difficult times if you stay positive looking for the good that will come of it.

Attitude is the key to everything. It changes how we feel and how we act. Once we have acknowledged the pain and loss. We choose how we react to it. Then we can live a life within those new limitations and still find joy. I don’t claim it is easy, but you will find it better than sinking beneath the waves of despair.

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Avatar 2

No, this isn’t about the movie, just thought I’d copy the name. Hands up who knows what an avatar is. OK, you didn’t really have to put your hand up. There will be some who don’t know what an avatar is. Which is ironic because if you are reading this on social media you already have one. You may not have realised it. Let’s use The Cambridge dictionary definition:

“An image that represents you in online games, chat rooms etc…” That picture at the top of social media is your avatar.

I like that definition, there are more and fuller ones. Very few avatars are actual true to life photographs of the person. Mine is of course 100% the way I look, rugged good looks and all. What most people do is to create a representation of themselves on their Social Media. But even if you post a photo, it is a staged or your best photo. We choose one that shows us as we want to be seen. Pouting, staring manfully into the distance, smiling, smouldering, eyebrows raised, shoulders back chest out, wistful, wise, you get the picture; no, you are the picture.

What’s the harm in that, you say? Nothing, but it does mean that for anyone we have not met in person, only online, will have a view of us based only upon our avatar.

Let me paint two pictures:

1/ The date: You start to get to know someone online. You like how they look; or at least their avatar, and you get on with them. All your chats are in tune with each other. You like the same music, films, places, activities, this is a perfect match. So you plan to meet. Arriving at the pub you both look around for each other. No need for roses in button holes, or any of that old fashioned nonsense. This is 2023, you know what each other looks like. She is beautiful, he is a hunk. Twenty minutes go by, you pass each other several times; even bump into each other. The average looking girl and the guy with a paunch. You both end up at the bar asking different bar staff if anyone has been asking for you. Overhearing each other you look across in shock. How can these faces, these bodies have been made to look so good. You both glance at you phones, the avatars, turn them around to show the other, then burst out laughing. You are the same people after all.

 

2/ The disguise: there are many people who don’t like the idea of putting a photo of themselves up as an avatar at all. They use all sorts of alternatives. Cartoons, photos of their children, photos of pets, photos of animals, famous people, quotes, or they do put a photo of themselves as a child or a young adult. Not everyone wants to advertise what they look like to the world. After all, not everyone can take the adulation and praise that some of us get on a daily basis. Wait a minute, did I mean adulation and praise? Not everyone has aged as well as me… I wish. Obviously, I do understand the real reasons people chose other avatars. Everyone has a right to their anonymity. Many people are shy of their image. Plus, some of the cartoons and pictures people choose are great fun. I have often thought of changing mine to a cartoon.

I am sure there was also a serious point that I had. Oh yes, disability and illness. It’s a big reason that people use alternate avatars. I understand, being visible as you are when you feel others may judge you, is hard. Having family and friends see you so changed is never easy. You may just not feel up to having a photo. Who am I to make any suggestions here. We all make our own choices. For myself I probably hit a mid point with my avatar. It is a photo of me in my wheelchair, but it is not too recent. I wear a hat to hide part of my face and the fact someone has stolen my hair… oh yes that age, not illness. I wear a bright coloured coat to distract the eye. I am smiling, that is a choice. Does that sound like an odd comment? If you have ever been long term ill and in serious pain, you will understand. You see, I am aware of my own attempts to hide. Put on a brave face to the world. Avatars are the masks we wear and yet they still say something about us.

Well I am off to change my avatar to one of superman, make it more accurate.

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Double Edged Sword

Double edged sword has always struck me as an odd expression. I am not a knight; King Charles take note. If I were, I guess sword fighting is no longer common. Mind you, at school I did do fencing. The amount of gardens I could enclose in an afternoon was outstanding… of course I don’t mean that kind of fencing. En Garde! Parry, lunge, riposte, feint, it was all second nature to me. After all, I did get my bronze certificate in fencing. They don’t give that out for nothing… oh they do. Swimming, fencing and English were the only subjects I enjoyed at school.

Where was I? A double edged sword. Care, what on earth has that got to do with fencing? My mind would make a fascinating study for someone doing psychology, so if you are studying…

Back to the subject at hand, Care, it is a ‘double edged sword.’ That’s what I was thinking. Then I thought, ‘aren’t all swords double edged?’ What do I know about swords and then I remembered I used to fence. You see, there is logic in there.

Right, care is a double edged sword. Are we all agreed? I haven’t even explained myself yet. How can you agree? OK, here we go, hang onto your seats. Buckle up, we are off on an adventure, or at least an idea or two.

When you need care and it is supplied. That is if you are able to find carers in these days of an underfunded and under paid care sector. When carers are as rare as hens teeth. But that’s another blog subject. When you do get carers you have a whole new… I was about to start singing ‘a whole new world,’ but I resisted, I bet you’re relieved. You have a whole new problem. I am not suggesting that the carers are a problem. Mind you, in the 9 years I have had care, they have not all been perfect. That’s me being kind. There have been a few issues. Let’s ignore that for now and look at the majority of carers who are brilliant. We will forget about the lady who turned up to do my care on a mobility buggy, then hobbled in with crutches! She stood there, both hands holding her up with crutches and asked, ‘what do you want me to do first?’ Answers on a postcard. Best to forget that. I obviously have no issue with disability, but we are slightly limited in the physical things we can do. So those of us severely limited ourselves, don’t make the best carers. Back to the subject at hand.

So, the good carers, walk in the door, unhindered. Having parked a car, not a mobility buggy, outside. Then it starts, or rather, it ends. You see, before you have care everything is different. If, like me, you have a partner, they may well be doing a lot, or all your care. That is really hard work for them. One of the main reasons for outside care, if you have complex needs, is to give your partner a break. As a couple, you get settled into a routine. You can get ready as and when you want. No one disrupts that routine. Whereas a carer has a set time to arrive and go. They come in, get you ready and leave. Things are worse if they arrive early or late.

The routine, or lack of it, that you have had, ends when care starts. Things change, which they probably need to. But that’s why it’s a double edged sword. Help and support is needed. Disruption to a routine is hard to adapt to. A new person in your house is difficult to get used to. Routines change and everything is turned on its head.

A new person in your home can feel like an invasion. Much as they are there to support and help, they are also unknown at first. Imagine a complete stranger coming into your house and starting to help you with intimate and personal things. Within a very short space of time they are doing things that most people would struggle to cope with. Who was the last person that wiped your bottom? Have you ever had anyone help you with washing and dressing?

OK, I have given you a glimpse at one side of the sword, the negative. Now the other, the positive. Having a good regular carer, that you get to know, is life changing. They can be so helpful, caring and supportive. In the past, down in Somerset, we had a group of carers who were brilliant. Now that we are in Hartlepool, we are setting things back up again. It can work really well with the right people.

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Visual diagnostics

I don’t know why we need doctors. The amazing visual diagnostic ability of the average person in the street is astounding. People can take one look at a disabled person and immediately know everything about their medical history and make a prognosis. More than that they can see if a person is in pain, tired, dizzy, having balance issues, feeling sick and a myriad of other symptoms all without any diagnostic scanners or instruments.

Yet can these aspiring doctors really be so perfect. Even the most skilled professionals with the best equipment don’t claim the diagnostic speed and accuracy of these amateurs.

Disease and illness are, in the most part, invisible. That might seem an odd thing for me to say. If you ever seen me, I am a full-time wheelchair user. So, you might think my disability is very visible. What we see on the outside, is a part of the effect that an illness or accident has on people’s bodies. It can even be the effect of treatment rather than the illness itself. It’s a bit like viewing an iceberg, you are only seeing a very small part of the whole.

Just to make it even harder to really grasp and understand an illness, disability, or the result of an accident: humans don’t show their full feelings. When you we are limited in some way we try and put on a brave face and push forward as hard as we can; smiling. You really do only see a tiny part of the whole picture.

There needs to be a mindset change in how to look at disabled and long term ill, people. I understand wheelchair use best, as that is how illness has limited me. But not everyone in a wheelchair is the same as me, I realise that. It is possible to need a wheelchair some of the time. It can be a means to travel further than their legs can carry them. That does not mean they are faking it. They need the chair to get around, in some cases that will be because day by day their condition varies. In others it will be because they can’t walk far. Cut them some slack. No one chooses a wheelchair for fun. Wheelchairs are uncomfortable, embarrassing, and difficult. You only have one if you need one. Wheelchairs, especially ones provided by the NHS; do not get issued unless you have a medical need.

Next time you see a wheelchair user be kind and understanding. You don’t know if you might end up in one in the future. Whether that is part time or all the time you will not find it fun. Don’t be quick to put on your doctor hat. Instead put on your caring hat and be understanding. Think, “there but for the grace of God, go I.” Be thankful, be considerate and be kind.

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One Step Removed

Some time ago I wrote a blog ‘Fly by Wire.’ It occurred to me that most people would not get that concept. But almost everyone will have used a PC, tablet, smartphone or smart tech. So, you will get this:

You want to do something on your PC, tablet or Smart phone. Open an app, check an email, play a game, write a blog or use a smart devise. You use the screen, keyboard or mouse and there is a delay or it does not quite do what you want. You ask a smart devise to do something and it ignores you. Frustrating eh? All forms of electronics devices, even Apple products, yes I really invoked that sacred name; can have delays. I know because I have an iPad and it can be unresponsive at times. Any complaints about that comment please send to: complaints@mikesnotlisteningnow.org.com.uk.eu

My point, because I always have one is this: trying to control an electronic device is one step removed from the actual physical devise. No matter how good the interface (that is just the bit that enables you to control the device) you are always a step or more away from the actual hardware, (the device itself.) Be that a PC, smartphone, tablet, iPhone, Kindle, Echo, Ring Doorbell whatever smart device. There is something between you and it (wiring, circuit board, touch screen, mouse, keyboard, wireless connection)

It gets frustrating when that ‘something,’ that extra layer, that one step of control, is too slow or sticky. It doesn’t have to be very slow either. Even a few micro seconds feels slow when you are using a smartphone or a computer. You press a button and there is a fraction of a seconds delay. You move a mouse and the thing you are moving is not quite moving at the same time as your movements. You click a keyboard or on a screen and the response is just a fraction behind. You scroll and the screen does not refresh at the rate of your viewing. You all know what I am talking about. That frustration when an electronic device plays catch up. No matter how small a delay.

Now apply that sense of delay, lack of response, not doing what you expect, to the human body. Imagine that your brain, your understanding, was you as a user of a device, and your body was that device. You want to move your legs, but there is a delay between trying to do that and it happening. Or your legs don’t respond in the way expected. It’s not that you cannot move them, they are not responding as expected. It feels as if they are ‘one step removed.’ As if the control system is broken.

I believe this is where a lot of the misunderstanding about disability comes from. Because a lot of us with disabilities have neurological conditions. The nervous system is the equivalent of the control system in a PC or smart device. It sends and receives signals between the brain and body. You start messing with that, even a little and you get delays and messed up signals. That is what diseases do, they mess with that.

Neurological conditions are many and varied. But a common feature is fluctuation. My earlier illustration might help you understand. You know how sometimes your computer or smartphone just won’t do what you want. Other times it runs as smooth as butter. Then there are times it gives an occasional glitch? Diseases can be like that, they can vary hour by hour, minute by minute, day by day. Someone can take a few steps but still be a wheelchair user. MS is one of the most confusing conditions for an outsider to view. A sufferer can look normal one day and be totally unable to walk the next. But if you remember damaged signal lines, faulty connections, it makes sense. The problem can fluctuate.

In my own case, my legs do not respond as I want them to. I can move them, but it feels just like using a control device that is one step removed. They respond sluggishly and in the way they want rather than as I want. They also lack stability and reliability. I can’t stand up or walk on my legs. Imagine it this way, you have a robotic pair of legs with a seat on. It is operated by a remote control. Every time you test it, the legs wobble or collapse. Would you sit on that seat and try to walk the legs around? My legs feel to me as unreliable as that. They are not a safe and reliable platform.

Another way to understand a bit about neurological conditions and the disconnect they bring is this: Have you ever been so exhausted/over tired that your body does not feel your own? That sense that as you walk your legs and arms are heavy and disconnected. The problem of trying to pick things up, but ending up knocking them over? Or perhaps you have been very drunk or needed to have powerful pain killers? You might remember how that feels? The clumsy disconnected feeling. All of these things will give you a small idea of what it feels like to have a neurological condition that disconnects you from your body. That affects your ability to control what you do. From fine motor control, to large motor control. For example: it could be problems with writing, picking things up, pressing a button. And/or problems with making your legs/arms move in a direction you want. Remember that all these problems can fluctuate in level/intensity minute by minute, hour by hour, day by day. Add into the mix extreme pain (neurological pain is different to muscle pain, much more severe and harder to treat) and the lack of feeling that comes from nerves not working, and you start to get a small glimpse of what it is like.

I did not write this blog to gain sympathy for me or others. I wrote it to gain understanding. Without knowledge, there is only ignorance. Ignorance of the plight of others brings about a lack of care and understanding. Most of us with neurological conditions have been where you are, diseases often hit later in life (not always, some are born with them.) This blog is to give you an insight into where we are and hopefully open eyes.

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Weight Lifting

No, I have not taken up a new hobby. Nor have I had a sudden healing. I didn’t leap out of my chair yesterday and grab a dumbbell. This is about a different kind of weight. Oh, you’ve all fallen asleep or stopped reading. Come back! It is worth reading.

Ever been flattened by life? You know that feeling when everything crushes down on you and life is too much? You may be feeling it now. If you are, don’t give up. Life is worth living.

I know that feeling. I understand it. Yet people see my smiling happy face and assume I don’t. I want to explain how I can smile in the midst of pain, frustration, and anguish. What keeps me going in the depth of despair.

Don’t worry, all you atheists can relax. I am not going to say God or Jesus. Oops, I just mentioned them both, and of course, they are my rock. But this blog is not about God and Jesus. There we go again.

Thought experiment:

Imagine the scene, I throw a fully loaded rucksack at you. Hang on, this is not a threat. It’s a thought experiment. You are imagining the idea. I throw a fully loaded rucksack at you. One so heavy it is at your maximum lifting capacity. You would buckle or collapse under the weight. Because at your maximum lifting capacity, you need to adjust and take the weight on board. Distribute it and brace yourself. Throwing it at you, gives you no chance to do that.

Now suppose I gave you the empty rucksack. You put it on and adjust it. Then I added things bit by bit. You keep adjusting the straps and getting used to it. I take it right up to maximum load. You will keep standing. The rucksack will be heavy, but you will manage it, if it is your maximum load.

The difference is gradually adding the weight. You have a chance to brace yourself and adapt to the increasing weight. Some people could probably go beyond their maximum weight. A slow addition of anything gives us a chance to get used to it.

Long term illness, pain and disability can be like that. It comes on over time. It is chronic (long term) and so the illness itself, the pain and disability increase over time. An aside here, there are still periods of sudden acute and increased pain in this picture. I am only talking general principles. Those bursts of intense pain would be akin to me dropping a very heavy weight in the rucksack part way through loading it. Your knees would buckle.

How do I and many others with long term illness cope? Because the limitations, pain and illness have come on over time. That does not mean it is easy. Take on board what I said about sudden bursts of pain. Also remember that someone with a long-term illness or disability must wake every morning and take that rucksack back up. It is not easy, just because we have adjusted to the weight. The background pain is still there. The illness has not gone. The disability stays.

Chronic pain and limitations have their own unique agony. They grind you down. Pain is exhausting, it makes you feel miserable. It is the thing I refuse to give in to. I will not act the way I feel. Why should everyone suffer, just because I am.

Perhaps the clearest way to express it would be like this. Very occasionally I wake up free of pain. It is so rare that I lie there for a moment waiting for the expected pain to return. Then having raised my bed. I look around and feel something that is almost indescribable. An inner joy that bubbles up and overwhelms me. There is a side of me that does not want to move in case the pain returns. Another side wants to dance (I can’t of course, as I can’t even walk) A massive smile breaks out on my face, and I enjoy the moment. I’ve not known this to last longer than a couple of hours. But it is a blessed relief.

To finish let me look at my rucksack analogy. This assumes you don’t already suffer long term illness/disability. If it were possible to instantly pass what I am experiencing to you. All the pain, limitations, and yuk. It would flatten you. You would have no opportunity to adapt. It would be like having that rucksack thrown at you. But when you experience these things yourself, they come on slowly. I am not saying that makes it easy. Far from it. Many days I struggle to keep going. I know that lots of people with long term illness struggle. My analogy is just to help you understand how I can smile and laugh in the face of adversity. Chronic illness and pain are really tough. Don’t assume that my smile means I am not suffering. I am just choosing not to be miserable.

I should make one quick finishing aside. Accidents are a whole other thing. I have had a life-threatening accident, so I know. Your body uses a mechanism to delay response to sudden accident. It is still a very traumatic event and causes great long-term distress. This blog is not looking at accidents.

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How to get help?

Something that comes up time and again is how to get help with long term illness/disability. I want to try and answer the following questions. What to do after:

  1. You are taken ill that leads to long term limitations.
  2. You have an accident that leads to long term illness.
  3. You have a relative who is limited long term to their house.
  4. Gradually a condition you or a family member has deteriorates. Leaving you or them more limited long-term.

In all these situations where do you turn for help?

We tend to think that the medical profession are the answer to medical questions. In theory, they should direct you to the right place. In my experience, that doesn’t always happen. This blog is not perfect, I cannot accept responsibility for your care needs. This is only a rough pointer. But I hope it may help direct you to help. It only applies to England and is only for over 18-year-olds (adults)

Who you gonna call?

In England and that is all I know about. You contact your local Adult Social Services. Look online or in the directory, it may be listed as: ‘Child and Adult Services.’ If so, look for the section dealing with adults. There will be a hub or central number of some sort. Get through to the main number and say something like this:

I would like a care assessment for (name of person needing care)

If someone is providing care long term (i.e. family member) then request it for them too.

Explain basic details of why the assessment is needed. This phone call is not where you give every detail.

What happens next?

They should send out, at the very least, a social worker. I know, we all think of social workers as the people sent out in socially deprived areas or to kids being abused. But, they also have a role supporting adults needing care. They are your first point of contact in this situation.

Let me just make a quick aside here: If you have a medical emergency phone 999. If you have a medical need contact your GP. This blog is only talking about ongoing care needs after a medical professional has dealt with your acute needs.

Depending on your level of need. You should also get other people sent out. I would think at the least an OT (occupational therapist) nothing to do with work. They look at moving and handling. It is the OT who looks at things like specialist equipment to help you manage around the home. In some areas that includes profiling beds. They will be the one to check your home is safe and suitable. So, if you are living somewhere that is no longer suitable. The OT is the person who can assess that for you. Unfortunately moving somewhere more  suitable is not so easy.

If your needs are mainly medical, highly complex and variable. Then the social worker should look at a CHC (continuing healthcare) assessment. You can request this if you feel your needs are complex, variable and mainly medical. The local authority is really set-up to deal with less complex health care needs. You can always seek advice or request an advocate if you think that you are not getting the correct level of help.

Different areas have varying approaches in the way they deal with district nurses and physiotherapists in the community. So I cannot give you any hard and fast answers on that. Ultimately it will depend on your needs. But your start point will still be adult social care.

A note about Wheelchairs

A specialist team of OT’s and other health professionals deal with wheelchairs and that normally needs a GP referral. In most areas you would need to have virtually no mobility to get an NHS wheelchair. But if you are struggling to mobilise, ask your GP about it.

Then what?

After your various assessments, a care package (if needed and agreed) will be arranged. How costs on this work, are a whole other area. I suggest googling that specifically. Or seeking advice on that. But in essence, if you have no savings and are on benefits, you won’t pay for care. There is a sliding scale after that.

To note

Care provision in the UK at the moment is limited. Too many people needing care and too few carers. Hopefully that will improve. Some of that is due to Covid and some post-Brexit.

A Request

This is a message from a Producer at ITV News:

Hello, 

My name is Jonathan Wald, I work for ITV News and I’m looking for your help with a special report I am working on about how there is not enough accessible homes for people with disabilities.

I am looking to film and interview two people in the following 2 different kinds of situations related to insufficient accessible housing:-

1.) Someone who is in a home that is clearly, visibly inappropriate for the needs caused by their disability

2.) Someone else who is forced to remain in a hospital or nursing home because there isn’t any accessible housing available for them to move into

We would like to interview these two people in the above settings on Wednesday or Thursday next week.

The report would be broadcast on ITV’s national news the following week beginning Monday September 19th.

Please can you email me on jonathan.wald@itn.co.uk or call me on 07771947805 if you would like to take part and you think one of the above descriptions applies to me.

Many thanks

Jonathan

Fame at last

The Mail on Sunday picked up on my article, ‘Enabled by your environment.’ I was interviewed about it and this article is the result. They have given it a very distorted spin. But heh, what do you expect from the national press.

https://www.dailymail.co.uk/health/article-11087385/Disabled-Britons-forced-opposite-end-UK-shortage-accessible-properties.html

Habinteg Post

Our policy work is central to our strategy to improve housing options for disabled & older people. 👉 https://lnkd.in/dCwhAQvw

As part of that work we produce evidence – like our Forecast for Accessible Homes – to influence policy & support best practice in accessible housing.

#ukhousing #property #accessiblehousing

This is an important issue

We don’t think it’s right that only one new accessible home is planned for every 15 people over 65 by 2030. That’s why we could use your support in calling on the Government to establish the accessible & adaptable standard – Building Regs M4 (Cat 2) – as the baseline for all new homes. (Although this is UK, I am sure there are issues worldwide)

Reshare if you agree & join us. →https://lnkd.in/dCK6iEN

In A Galaxy Far, Far, Away…

Star Wars must be the most disabled conscious movie franchise ever. Unrealistic and silly, of course. But, it has so many disabled people in it. Some play really major roles and are completely unlimited by their disability. Just think of Darth Vader.

Never mind blades or artificial limbs. Take a look at the reconstructive surgery on Star Wars. This was ‘A long time ago,’ not just, a long time ago, but, ‘in a galaxy far, far, away.’ Obviously one that believed in equal access for all. Now it’s true, they had slaves and they went around blowing planets up. No ones perfect. They also didn’t have the best environmental record. Any civilization that has a complete planet as a city, has issues. Then take a look at the amount of metal and technology in their garbage disposal. What about all the stuff they jettison every time they go to light speed? Don’t get me started on their waste of energy. Heating massive empty spaces with ceilings that disappear out of view. Come on evil empire, join the energy saving nations of the universe.

As for health and safety. I don’t think they had thought of it. All those balconies on space stations without railings. The bridges that retract. Then when they do extend, they have no railings. As for the idea of having a power station in your living quarters with an open access to fall into. That’s just asking for trouble. The Evil Emperor did very well not falling into it long before Darth Vader threw him in. That was an accident waiting to happen. Pod racing? Well, it makes all the sports we have look suitable for kids.

But I am blogging about disability. Which is just as well. So I don’t need to look at any of that. Darth Vader is a disability hero. OK, so he may have murdered millions of people. He had his faults. But, he was severely disabled. Only half legs, half arms. Major lung problems. He doesn’t just sound breathless, he was. Yet as he strode around the battle stations. Strangling disobedient Admirals, he looked fit as a flea. It’s just as well he didn’t need to pass any PIP assessment. He would have failed.

Imagine the scene. He would have sent the form back. Truthfully saying that he had no legs below the knees. No arms beyond the elbows. Serious lung problems (COPD maybe?). But with PIP they are not interested in what you have, but what you can do. So they would ask. 1/ How far can you walk. DV would answer. ‘Don’t waste my time with your puny questions. I have a Death Star to inspect. The examiner would check the size of a Death Star and put the answer down as 6 miles+. 2/ Can you lift a bag of potatoes? DV I will rip that generator from the wall and throw it at you. The examiner will look at the generator and estimate the weight at 3 tonne and put, yes. The rest of the questions would go in a similar way. When Darth gets the PIP refusal letter, he would lift the examiner by his neck and say, ‘your lack of respect disappoints me.’

It’s not just Darth who is amazingly able in spite of disability. Luke Skywalker has a false hand. Yet you would never know it. Luke’s Uncle ends up in a flying wheelchair. I want one of those. Why aren’t they around, a long time later, far, far, nearer.

There are even characters whose only human organs seem to be a human heart. That gives a new meaning to a heart transplant. Maybe they do body transplants? Disabled people may not get a blue parking space on Star Wars. But they get flying wheelchairs, robotic parts and complete new robot bodies. I am not queueing up to go to that universe. I don’t fancy everything that goes with it. But if I could pick and choose. Then either a new working body. Or failing that a flying wheelchair.

Oh well, A long time ago, in a galaxy far, far away… they had some crazy ideas about disability.

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The Unexpected Emergency – New version

I didn’t plan on giving Mary a big shock that morning, in fact really it was 111 that should bear the brunt of the blame.

The day started fairly normally, for me. It was 2006, it was the last time we were living in Hartlepool and this was before I had the downturn in 2007 that led to me needing a wheelchair full time. I had a routine blood test at the GP surgery. Except it wasn’t as routine as I hoped. Anyone who has had a blood test will know that the comment, “you’ll feel a slight scratch.” is absurdly optimistic. Most times, not only do you feel a very sharp scratch, but it also aches while they take several tubes of blood. That day I felt absolutely nothing, not the tiniest bit of pain. Not the needle going in, not the ache while it was in, not even the nurses hand on my arm. It’s been said before, I am very fast to react to such things and take action. So obviously I totally ignored it, didn’t mention it to the nurse and went home. I did think about it at the time. My thoughts went like this, “that was odd.” At home I thought again, “that was very odd.” So you can see, I was very on the ball.

Actually “that was odd.” Is a favourite expression of mine. I said it several times when our neighbours house was being burgled. I heard the break in, and I said to Mary, “you don’t see that every night”, as I watched the thieves walking down the road with a TV. My brain churns slowly sometimes.

My brain was working just as fast after I couldn’t feel my arm. At home, I rolled my sleeve up at home and touched my arm, it felt like it had been anaesthetised. Finding a pin I tried sticking it in various parts of my arm but it was numb.

Before you think I am a complete idiot I did wonder about a stroke. So I lifted both arms, which I could do, same strength. I could feel both legs. I looked in the mirror and smiled. My straight and goofy face smiled back. Obviously something was wrong, but it wasn’t likely to be a stroke. Mary was in the kitchen cooking lunch and over the years I had caused her enough panic with my illness. So I decided I would check it out with 111 rather than bother Mary about it. I think 111 was a different number at the time.

Our phone was in the hallway opposite the front door and by the stairs. I sat on the stairs. Mary was through the other side of the front room in the kitchen unable to hear anything as there were two closed doors between us. I explained to the 111 operator that I had a numb arm but I was sure it was not a stroke. She told me to hang on a second, then continued to ask questions. Before she had finished asking her questions there was a knock at the door. I opened it to find two paramedics standing there. We lived just half a mile from the hospital, hence the speedy arrival. I hadn’t even known the operator was requesting paramedics, so I was just a little surprised.

Explaining their arrival the lady on the phone said she had requested them immediately and let me go. I was taken into the front room and wired up to a heart monitor and had an oximeter put on my finger. Mary was still cooking in the kitchen with the door closed oblivious to all this. I was fully checked over, heart, oxygen, blood test. As always with any ambulance visit they offered to take me to the hospital for a full check up, but they could see what I had already said, it was not a stroke. I later found out it was one of the early signs of neurological damage I now know that I have.

It was while the two paramedics were standing over me with all their equipment connected that Mary walked through to say lunch was ready. She took finding two paramedics in high vis jackets, standing over her husband who was wired up to a heart monitor, extremely well. If she was shocked and horrified she hid it very well. Her jaw only momentarily hit the floor and her eyes were only a little wide. I’m also not sure it was a gasp she gave, it could have been a sound from the kitchen. The pressure cooker could have been on.

As I began it certainly wasn’t my plan to shock Mary and as you can now fully see it was really all the fault of the 111 operator anyway.

 

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