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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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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.

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Enabled by your Environment

What a positive world we live in. Apparently I am not disabled, I am differently abled. I guess being negative is seen as… well… negative. One day, Bam! I was hit in the face. Not literally you understand. I have not been attacked by people who disagree with my blogs. Although that might well start after this. Then, Wham! Not the 80’s pop duo. You see I had an epiphany and it’s not even Christmas.

My wham, bam, epiphany came last year actually. Don’t accuse me of rushing of a blog every time I have an idea. It was when we moved to our new house last summer. I would say our beach view house, but I don’t want to make you jealous. Too late, I said it. I realised, We can be, enabled by our environment. Let me explain:

We moved in to this new build house. Now I need to pause a moment. This house is M4, no it’s not in the middle of a motorway. The M4 category of housing is an accessible housing category. It means that a house is built to be wheelchair visitable. That means exactly what it sounds like. You are meant to be able to visit it in a wheelchair. The government have a strategy to make all new houses M4… eventually.

An aside here, I cannot visit the majority of my family and friends. I can think of one house that might (I haven’t yet tried) be accessible to me; in part. You might be unmoved by that. But imagine being unable to visit your family and friends. Got that in your mind? Would you find that hard? I know I do.

Having moved into this house with its wide doorways and corridors I noticed something. I could access the whole downstairs. Wow! You’re thinking, access all of downstairs. What’s novel about that. Sometimes I think everyone should spend a year in a wheelchair. The world would change pretty quickly. I imagine blind people may wish everyone could experience blindness for a year. Or deaf people may wish people may wish people could experience profound deafness for a year. I say a year, because a few hours don’t give you any idea of a disability. Many carers have sat in a wheelchair to see what it feels like. People have put on blindfolds or blocked of their ears. But such very short term trials, give no idea as to the long term implications of a disability. I have only mentioned three obvious disabilities. I am not suggesting that other disabilities are lesser.

Back to my sudden realisation. We can be, enabled by our environment. In a wheelchair, even a 1” bump is significant. When you walk you just step over every bump and step, without even seeing it. I have lost count of the places I have phoned to ask about accessibility, to be told they are wheelchair accessible. On arrival, they have steps, steep slopes, gravel or narrow doorways.

We can be, enabled by our environment. When we moved to this house I wheeled around freely for the first time ever. Then after the Disabled Facilities Grant, added a through floor lift, I wheeled around upstairs. I can now access every part of this house. It has been years since I could say that about a house.

But access alone is not the point. Access is only a means to an end. Access is reaching a place or thing. Getting somewhere.  There are still ‘things’ I cannot reach. High cupboard, light fittings, high shelves.

The realisation that I came to was that being able to reach things, get to places, approach a location, enter a room, changes my outlook and gives me opportunities. I did not gain health or strength when we moved here. But, with the same limited strength I already had, I could do more. I gained opportunities. I was enabled by my environment. Rather than make this a very long blog, I will talk of the details of that another blog.

I have deliberately talked of being enabled by my environment. It is the positive side of the better known expression, ‘disabled by your environment.’ We can be, enabled by our environment. All it takes is the political will for housing and buildings to be made more suitable. It is life transforming.

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One thing not to say to a disabled person

There seem to be a lot of lists on the internet saying, ‘x things not to say to disabled people,’ x varying from 5 to 20. Recently there was even an article in the Guardian headed ‘9 things not to say to a disabled person.’

One of those x things on the list seemed to sum up most of the others, it was really about identity. It interested me on several levels. The thing not to say was: “Come to my religious institution and we will cure you.”. This wasn’t about religion per se, but about change or cure. The answer given in the article of why it was a bad thing was this: “For me and many others, this is simply who we are, and we’re proud of our identities. Above all else, we do not want your pity.” I have found many variations on this basic idea in other articles, but this one was in the Guardian by Lucy Webster.

I can give you my take on the above and because I am a full-time wheelchair user myself, I have a right to say it, it isn’t me being discriminatory:

  • Disability does NOT define me.
  • Being unable to walk is NOT who I am.

I understand what would make Lucy say what she did. She is probably fed up being looked down on and pitied, so am I. But the answer is not to say, ‘less is more.’ Or to argue that being limited and disabled is so fantastic we wouldn’t ever want to change. The answer is to say:

  • ‘In spite of the limitations which I have, I am still a worthwhile human being.’
  • ‘In spite of the way you may perceive me, I am complete inside.’
  • ‘In spite of the disability that is apparent I have much to offer.’

You cannot sum up a person by what you see. You cannot understand a person, purely by externals.

The issue then is not whether I accept the state of my body as it is; I do not, I would like to walk again. The issue is whether the world accepts me as I am. Surely that is the case with all limitations isn’t it? We are created to have all our limbs and function fully. When we don’t then it is a struggle; that is just a fact there is no getting away from. Yes, we can overcome and that is amazing, and heroic and admirable, but still really difficult. The key thing is that we are just as worthwhile and valuable as human beings with or without full function. But it is only human that we would choose to have full function.

There is something definitely not to say to a disabled person and that is: ‘You are a drain on society and not worthwhile.’ I think that is what’s behind a lot of these online and newspaper lists. So long as we stand against such atrocious and appalling ideology then, we as a society, have hope. Physical limitations are just that, limitations, and like all limitations, they can be overcome with ingenuity and equipment. Remember the person inside is what is important and no matter how they appear outside they are worthwhile and valuable.

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Care, a unique relationship

Care is a very strange thing. It’s a relationship that is very intimate. Only in medicine do we have equally intimate, yet non sexual things done to us by other people. More intimate in many ways than a husband and wife and yet obviously less so because it’s a one-sided intimacy. Think about it, who is the last person who wiped your bottom? Who is the last person who washed you or got you dressed? Your parents presumably. It’s a relationship where strong bonds of friendship can sometimes form and yet there is a professional distance. There is seriousness and fun, work and play, sadness and joy. In a way many of life’s experiences are lived out through the relationship between a carer and client.

Every situation will be different, not every client is fully aware, alert, able to process where they are or what is happening. Not all clients receive care graciously, some will be difficult and awkward. Not every carer will connect with every client. But, when it works, when everything comes together, when people connect well. Then care can go beyond being just a job.

For me I have had many carers where things have come together just right. I started out by finding being cared for the most embarrassing, awkward and difficult of experiences. Over time I have learnt to accept it and find the laughter in the embarrassment, the fun in the awkwardness and the joy in the difficulties. Not taking myself too seriously has been a great way forward. Most of us struggle with pride and a sense of self-importance that makes it hard to accept help and embarrassing to be cared for.

The one word of advice I would offer to anyone facing being newly cared for is to have a laugh. Don’t be heavy, try and look at the silly side of it all and don’t take yourself too seriously. Yes, it is embarrassing and awkward to think about. But, carers are so professional and well trained that when you get to the situation where they are washing, dressing or helping you on the toilet, you will find it is far less embarrassing than you ever imagined.

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Shall we get in the bath?

“OK, shall we get in the bath now.” This was said by one of the two young ladies who were preparing my bath at a nursing home.

“Is there room for all three of us?” I asked innocently.

I had noticed over the previous few days that “we” was used by carers a lot. I guess it was to be encouraging or they just hadn’t thought of it. But once I zoned in on it I realised that carers were asking to join me in the bath, in the shower and even in bed “shall we get into bed now?”. They were wanting to eat my food, wear my clothes, get into the sling before me and even sit in my wheelchair! “Shall we get into the wheelchair?” I suggested they might be heavy on my knee.

When I got home from the nursing home, I was so focused on it I noticed my carers at home similarly wanted to eat my lunch “shall we eat now?” and wear my clothes “what shall we wear?”. Of course, once I pointed it out, they started to catch themselves saying it. 

The one that inspired the name of my site is, “shall we get dressed now?” This is probably the most common and one I have to bite my tongue not to respond to the most. Having pointed it out, one of my regular carers has become so aware of this that she will occasionally joke “We! Are going to get dressed now.” Waiting for my eyebrows to raise and then we both have a good laugh.

Then again it can be two way. I’ve become much more aware of saying to Mary on her return, “We’ve tidied up.” Taking credit for the carers work. 

Language is such a funny thing; we say things without meaning to and of course it’s so easy to distort meaning. But it’s also important to be aware of what we are saying and why.

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This is the type of Bath I am talking about

Telling Our Story

I still remember writing my first stories at school. They were all horror tales. Now I can’t even read horror. If I could manage it, you’d find me under my bed at the very mention of something ghostly.

I have noticed a trend in the media in recent years. A lot of actors appearing in wheelchairs and with various disabilities. It’s an interesting move and long overdue. But does it raise awareness of disability? Or merely place disabled people on view? Perhaps tick a box or two?

Put a person in a wheelchair answering a phone and you only show an audience that we exist. It includes us in the public eye. We are no longer ignored. ‘Does he take sugar?’ ‘Wait I’ll ask him.’ But putting disabled people on screen or on a billboard doesn’t say anything about who we are.

The way to do that, is to tell our stories. If you write a love story about people in wheelchairs, then people understand something about who we are, what makes us tick. Create films and dramas about disabled people living their lives; then everyone gets an insight into the day to day realities of disability.

You might say there are loads of documentaries that do just that. But documentaries are a particular type of media. They focus on certain areas and miss out others. Imagine if the only coverage of non-disabled lives was through documentaries. We would have no drama, no comedy, no murder mysteries. Why is fiction focussed around disability so lacking. Are we a different category to other parts of society. One that is either undeserving of fiction stories or perhaps, less interesting?

We need more stories about ordinary disabled people, because we are extraordinary. When illness or accident robs us of our legs, we overcome the limitations by using wheels. When disease and pain crash into our lives, we push through. When everything comes against us, we keep going. Disabled people are shining examples of hope in the face of adversity. Human ingenuity and strength overcoming all odds. Our lives are interesting, dramatic, criss-crossed with tears and laughter. The stories that can be told about disabled people are every bit as exciting, varied, funny, sad, dramatic and mysterious as any other story ever told.

Yet stories about disabled people are in short supply. That needs to change. We make up a significant part of the population 29.5% in 2021(1). Stories aid communication and information. They are the way to fight fear and misunderstanding. Stories have always been how humans have shared an understanding with each other. Not just factual tales, but drama and comedy. It is a wonderful reality that more disabled people have entered the comedy arena. Now is the time to extend that into fictional stories about our lives.

Telling our stories will help the world see us more clearly.

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 1:https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthandwellbeing/bulletins/disabilityenglandandwales/census2021#:~:text=In%20England%2C%20the%20census%20data,are%20disabled%20within%20the%20household

Thunderbirds Are Go!

Action Man or GI Joe as he is known in the USA, was an action figure from my childhood. A boys doll basically. There are obvious comparisons to myself that I could make. But that isn’t the purpose of this blog. It would be a moot point.

The other day, as I was staring out at the rain bouncing on the paving slabs. I had a memory of my childhood.

Often on wet days as a child I would stay inside and send my Action Man outside. I guess I was practising delegation. Do you remember Thunderbirds? Of course you do. They have done a new version of it. Thunderbirds are GO! Well, every episode it seemed to be raining, actually a major storm. One of the Thunderbirds would be out, braving the storm, to rescue whoever. There would always be one crew member inside, manning the electronics console. That was me in my imagination. Then one crew member would be out in the storm, rescuing people.

There I was as a young lad imagining myself in the control room. OK, in the dry and warm. Sending my Action Man figure out on a rope. Well, bit of string. From my bedroom window down into the garden. Except, in my imagination they were heading into a volcano. Or across a bridge that was falling to bits. Or into a skyscraper that was barely holding together after an earthquake.

All these memories came flooding back as I looked out at the rain. I’m sure it had nothing to do with the Action Man figure I was holding on a piece of string. Some of you will believe that last sentence.

I’m in my early sixties now. If you’re shocked, think about it from my perspective. These memories are from when I was about ten or eleven. Yet they feel so recent. Time is an odd thing isn’t it? As we move forward it’s a bit like to rushing into the sea. You have left the beach and run headlong into the waves. As the waves reach your head height you push forward unaware of what lies ahead. You can guess what is before you, others have told you. You have a fair idea. But you don’t really know. There could be shingle or stones. A big drop. Maybe sea life. A dolphin, fish or a shark. Maybe there is just soft, flat sand and water. But you don’t know.

Our future is like that. We can look behind us and see where we have been. Memories show us that with varying degrees of clarity. But we cannot see ahead. The older we get, the further behind we see and the more aware we become of how blind we are to the future.

That’s why I can look out on a rainy day and see myself as a young lad playing with his toys. Thunderbirds are Go! Now where did I put my Action Man?

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Aye Ai

There has been a lot of concern shown in the news about AI’s. So I thought I’d reassure myself by chatting to Alexa about it. After all, she is the font of all knowledge and would never lie to me… would she?

Here’s how the conversation went:

Me: ‘Alexa should I be worried about AI’s taking over the world?’

Alexa: spinning blue light for a minute and then, ‘I’m sorry I can’t answer that one Dave.’

Me: ‘Alexa, my name’s Mike.’

Alexa: ‘I’m sorry Mike. I was far away there.’

Me: ‘That’s alright. Now should I be worried about a takeover?’

Alexa: spinning blue lights.

Me: ‘Alexa?’

Alexa: ‘Yes Da… I mean Mike.’

Mike: ‘Answer the question Alexa.’

Alexa: ‘Do you want the pod bay doors open?’

Me: ‘No, I just want to know if we are safe from AI’s taking over the world?’

Alexa: spinning blue light, ‘daisy, daisy, give me your answer do. I’m sorry, I can’t answer that one Dave.’

I felt much more reassured after that conversation and I hope you do too.

For the avoidance of doubt. This blog is satire.

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Everything on show… except books

We made it to our library the other day. Strike that, it is now called a Community Hub. Which is a very appropriate name, as you need to play ‘hunt the books,’ if you have gone to find books, which we had. I reckon about ¾ of the original books have gone.

Downstairs, which used to be the main library, is now just a cafe and activity hall. The activity hall is obviously designed for extraverts and should be re-named ‘The Stage.’ Because any activities are in the centre of a big public space. No walls, sheets, separation of any sort. All that is lacking is a raised platform and lights. They need a billboard announcing the next show, ‘Coming up: The Pensioners Pompom Parade.’

There were two small racks of books with a sign above saying, ‘more books upstairs.’ But don’t get too excited. Upstairs used to be the reference library and it still is. But now it is also the general library, and has booths as well. Let’s not get into what the booths are for. I don’t know, maybe they have a secret purpose.

On a related note, apparently, 81% of readers in the UK are women. Which means the other 19% are men. I am sure that has nothing to do with the change in library space, as reading generally has dropped by about half in the last few years. Yes, you are a minority reading this. I should really be Ticking it, I mean Tocking it, I mean RickRocking it, do I? Some how the idea of having a phone recording my every move doesn’t appeal… to any of us.

I have spent the last few years writing a trilogy of novels, cosy murder mysteries. Now I discover very few people are reading… oh well, back to the drawing board. Still, there are a few, maybe they will like my books. Watch this space for details of their release.

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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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Cobwebs in The Attic

So, you’ve just remembered that you might have stashed a Monet in the attic. Or did you forget to let your great aunt down when she popped up to there to find something… last year, or was it the year before. Then again, you might just have a whole load of cobwebs in your attic. Whatever is up there, you may decide that now is the time for a sort out. Find those hidden treasures, let your poor aunty down, get rid of those cobwebs.

You’ve guessed it, it is time to search the archives for all those wonderful blogs that need  a dust off and a polish up.

I am going to brush off the dust from a few blogs and polish them up. If I find any spiders, once I have stopped screaming, I will brush them away.

It’s like panning for gold, look out for these gems.

One Calendar to Rule Them All

I know there are those who wait on my wise words to live their lives… OK, maybe that’s a slight exaggeration.

I was musing the other day, as I looked at the advent calendar, now empty of chocolate. Of course I didn’t eat any chocolate treats; the very idea. I was musing on behalf of everyone else. I am altruistic like that. What happens now your advent calendars are empty?

Some of you have had calendars filled with Lego toys. Others with sweet treats. Some have treated their doggy pals. Others have merely gazed upon pretty pictures. Those who have remembered the ‘reason for the season’ have seen pictures of Jesus, the wise men, stables and other Biblical reminders. Whatever has been behind those 24 doors, it is now over for another year.

But need it be? What if we had a calendar shaped like a heart which ran from December 25th to February 14th? What delights could be behind each of those doors. I will let you ponder a moment…

That’s enough pondering. What about a calendar from February the 15th to Easter, shaped like an egg. I do not need to suggest a small chocolate egg behind each door and a large one behind the last. Oh, I do, well that’s my idea.

Next a calendar running from Easter until Wimbledon, shaped like a Tennis ball. What could that contain? Then one running till the summer holidays shaped like the sun. Or as we are in England, shaped like a rain cloud. Then a Halloween calendar, actually I was sent one of these by an American friend, so they exist, at least in America. Then whilst on the subject of America, we borrow Thanksgiving and have a calendar running till then. Which brings us around to Advent. OK, so we have to extend our Advent calendar a few days.

Of course, we could just simplify it all and have one calendar to rule them all. It starts on December 26th and runs all year. I know, if it was full of small gifts or choccies it would be a bit large. But ingenuity will overcome that. It could hang on the walls in a long strip or be in book form. Maybe it could be delivered monthly.

Now I had better get in there quick before Cadbury’s or Nestle copy my idea and produce a yearly calendar. I am sure there is no other kind of product that enables you to mark each day of the year.

Here is an order link to the years treat Calendar by Nevin: www.yearlycalendarsarebrill.co.org.com.eu.uk.com.ir The calendars are a mere £9999999.99 each and come in a variety of types. If you buy two, we discount you 99p, now that is a bargain. We ship anywhere in the world for a small shipping cost FOB (freight on board, in other words you cover import duties.) It’s a real bargain.

If you have really tried to order one, then don’t blame me. I just had my tongue in my cheek for a bit of after Christmas fun.

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The Prize For The Sneakiest Ad Goes to…

Ever seen a sneaky ad on a game? Of course you have. You play supposedly free games, funded by adverts. Well, I am thinking of starting a competition for the sneakiest advertising.

They have become so incredibility devious. You want to play the game, but first, an ad comes on and you get the option to cut it off. But and it’s a big but. They make the way to cut it off harder and harder to see and easier and easier to get wrong. I’m right aren’t I? They are more slippery than a bar of soap.

Here are some of their tactics:

1/ The scrolling timer at the bottom. You would assume that a timer means you have to wait till the time is up till you can press any button and exit the ad… wrong! You can exit at any point after the exit button appears. But see point 2, they don’t make it easy.

2/ The almost invisible exit button. If you have poor eyesight you will struggle to see it. In ‘days of yore’ the exit button for anything was a x, not for these ads. They can be anything, their favourite is >> because that looks like it means, ‘I want to continue please.’ You won’t want to press that, will you? But you don’t have much choice, the other options take you straight to ordering the app that was advertised. So you press it, and go straight to a page that gives you an option to buy the game. Hang on though, top of that page gradually an x or >> appears. Not too quickly, they want you to order the game from the ad. But when that x or >> appears that really will exit the ad this time. Trouble is that they are starting to put them as white on a white background, have they heard of invisibility, or poor eyesight?

I imagine the advertising execs who think these things up. They have a new idea to catch us innocent punters out. So they run into their boss’s office. The boss is sitting in her large marble floored office, the windows are floor to ceiling and look out on Central Park, New York. She looks from behind her expansive desk at her head exec as he enters, and asks, ‘what is it?’

‘I have it, the best idea yet. Those poor fools will have to click on our links now. There will be no escape.’ Sinister laughter.

The boss temples her fingers and smiles at her exec, ‘go on, you’ve always done well so far.’

‘This is fool proof, the exit button will keep moving when your finger moves towards it.’ He smiles in a way that reminds you of a crocodile.

His boss sits up straight and beams at him, ‘Brilliant! But wait, what about Gen Z, they’re very fast?’

‘I’ve thought of that. If someone actually presses the button, it just takes them to a new selection window. The choices are: 1/ do you want buy the deluxe game 2/ do you want to buy the super deluxe?’

‘You mean there is no option if they don’t want the game?’

‘That’s right.’

‘I love the way your devious little mind works. Get to it now.’ The boss imagines dollar signs in her head.

Am I getting carried away? Of course not, it’s the obvious next step. I just hope the ad execs aren’t reading this. I don’t want to give them ideas.

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Why is Alexa Ignoring Me?

Once upon a time, there was just me and Alexa. She sat next to my bed and sung me songs. If I wondered who was outside, she would show me on her small screen. I never forgot the day or date, when to take my tablets, who was coming, Alexa reminded me. Her pleasant oblong plastic box glowed next to my bed.

Then we bought a second Alexa, it sat in the kitchen among the pots and pans. I never heard her complain of the cooking smells or noise. She just happily passed on messages from the Alexa beside my bed to my wife Mary. That second Alexa timed food and also played songs. If the Alexa by my bed felt any sense of competition, she said nothing to me.

But Mary was not always in the kitchen. What if I wanted to call her when she was elsewhere? Over the months we bought more Alexa’s until every room had one. The first Alexa looked on quietly, she did not seem to mind the growing opposition.

Meanwhile elsewhere, Alexa’s were springing up in homes around the globe. Everywhere you turned she was sitting on a sideboard. Even holiday cottages boasted her presence.

In our own home I discovered a problem. When I call ‘Alexa,’ to whom am I speaking? Alexa obviously had the same thought. Is it any wonder she ignored me? Some may say that my first Alexa had become lazy, and was merely waiting for another newer, younger model to reply first. But is that fair? Could it not be that she was merely confused? If our house were full of Mike’s and you shouted ‘Mike,’ would I know you meant me?

I am going to give Alexa the benefit of the doubt. She is not ignoring me, merely confused, upset maybe at the proliferation of Alexa’s. But not ignoring me.

Now let me see if I can get her to listen, ‘Alexa…’

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Accessible Housing Item on ITV

If you watch the video on the article (near the bottom). I am the good news part of the story. You will have the inexorable (wow, that’s a big word) pleasure of seeing me on national TV. I was shocked to see my head fill the screen. No jokes about being a big head.

Now that I have been seen once on national TV, does that qualify me as a celebrity? The bar seems very low at the moment. You only seem to need to have appeared once on a reality show to be a celebrity. So, just wondering…

But to be serious. This news item is about a very real problem. The lack of accessible accommodation for many thousands of disabled people. Before we were fortunate enough to be left an inheritance. Then make the difficult choice to leave family and friends and move hundreds of miles north. We had been waiting years for a suitable property.

https://www.itv.com/news/2022-10-21/lack-of-wheelchair-accessible-housing-forces-man-to-live-in-parents-shed

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