It’s never easy to sell a house and Covid is not making things any simpler. But add into the mix a disability and then things start to get difficult.
I have written this blog to open the eyes of agents and buyers to the extra complexity disabled sellers and their families face.
You phone up most sellers and say, ‘I have a potential buyer, they’d like to view your property.’ The scene on the other end of the phone is much like a swan in the water. Calm on top and manic paddling underneath. ‘Yes that’s fine, says the home owner.’ The moment they hang up all hell breaks lose. Families are sent into a blind panic. Mums and dads start throwing toys back into boxes, hopefully not still attached to the child. People run up and down stairs presuming that the shear movement and speed will tidy the house by sheer momentum. Vacuum cleaners are rediscovered and put to use.
‘I thought Dyson’s were meant to be easy to empty, love?’
‘They are. Just press that button.’
‘Over the bin!…. I hope your going to clean it up?’
Newspapers, pots, pans, half finished meals, school work, clothes (clean and dirty), phones, toys and everything else you can imagine or not, is thrown, stuffed or crammed into every possible empty space. Many things never to be re-discovered until years later.
‘Was that work project important dear? I just found it in granny’s old trunk in the attic.’
‘I never liked working for that company anyway.’
We have probably all experienced scenes like these, if we have ever sold a house. These situations are nothing compared to the extra delights that come with disability.
Does a potential buyer want to see urine pots and commodes, conveens and creams? These things are really best hidden.
What about the person happily sitting in a hospital type bed? The fact that 95% of their time is spent there is no excuse. I know that four people topping and tailing in a bed looks very funny in ‘Charlie and The Chocolate Factory,’ But it’s less amusing to see one person in a hospital type bed when you are trying to view a room.
‘Don’t mind me. Pretend I’m not here. Sorry about the smell by the way.’
Besides in these times of Social Distancing, only 2 or 3 people are allowed in a house at a time. Out, out you go, into the cold and wet. Get dressed and ready then, hoist, slide, heave, whatever your method get into that wheelchair, wrap up warm and out you go. Then wheel around the block, around the park, hopefully not around the bend.
You see being disabled adds a complication. You cannot just pop out when a viewing is due. These things need planning. Everything to do with being disabled is slower, more complex, more involved. For many of us we need help doing it. For a lot of us that help comes from our partners. The same partners who have to get tidied up for a viewing. The same partners already rushing around.
I say these things not to guilt trip people but to help in understanding. If you have disabled clients or if you are viewing a home owned by someone disabled. Or a home with a disabled person in it. Give some leeway, understand things are more complex and harder work. Be understanding and allow more time. We still need to buy and sell our homes, but we need help and understanding in that process.
There is an old expression about walking in another person’s shoes. It is meant to get us thinking about what another person’s life is like. Well, I was thinking today about that, or to put it another way, empathy. I can gain a fair bit of understanding about another person’s situation. It’s very possible to care passionately about the plight of others and put lots of energy into helping them. But I was wondering if we can truly understand another person’s situation? Can we really walk in their shoes metaphorically, obviously some of us can’t ‘walk’ at all.
What got me down this line was thinking about all those who are doing great things for disabled people. Let me make an aside here, I freely use the word ‘disabled’ because I am ‘disabled’ from doing the things I once could do. I am not ‘differently able’ I have new limitations that did not exist before and it is a nonsense to try and hide that through inclusive language. I do not accept my ‘disability’ as part of me; it is a nuisance and I do everything I can to work around it. The world makes that extremely hard. Now back to my point. The many people doing things for disabled people. Many of them are doing it because they have disabled children, parents or partners. It got me thinking about perspectives. The perspective of a person trying to understand the situation of another.
Due to the nature of my condition, I occasionally lose the use of my arms for a period of time. So, I can get a glimpse into what it’s like to have no use of your arms. But I would not claim to truly understand what that feels like to have no use of my arms because I get it back; that may change in the future. Therefore, I can get a flavour of what it’s like but not fully live the experience. That is an important distinction. It is possible for any able-bodied person to try out a wheelchair to see how that feels, put a blindfold on to see what blindness is like, wear headphones to get a feeling of deafness, put on gloves to mimic loss of feeling, but none of these things give the participant a true experience of the condition they mimic because they end unlike the condition they are mimicking. They are a choice that is for a limited time. Choice being the key word, it can end at will.
I remember in the 1980’s a cabinet minister made a big fanfare of living in a flat on Income Support for a week. What a rubbish experiment! Most people could starve for a week if needed so to say that he could live on limited income for a week was a ridiculous idea. Most people can cope with any limitation when they know an end is in sight. Of course, in the situation I mention the cabinet minister didn’t have to buy cleaning products, gifts, holidays, clothes, heating etc. Nor did he have a family to feed.
Illness and disability are conditions which lack choice, they are relentlessness. They wear away at you day after day. It is not possible to really get inside that without experiencing it directly. So that even the most good hearted and noble minded able bodied person cannot truly understand what that is like just observing from outside. What they do fully understand is the effect of illness and disability has on their lives. The limitations it causes on daily life. The extra work caring for someone. The financial constraints. The changes to plans. The change of personality they see in their loved ones. All these things are clear to them; but they are outward consequences of the illness or disability. Only a disabled person can know what it is to be disabled; what it feels like. Because words never fully express feelings. The change within a person is just that; an internal change.
Let me draw together what I am saying. It is wonderful that so many able-bodied people want to speak on behalf of the disabled; do not stop. But we can also speak for ourselves. Quite a lot of us are very good at communicating ideas. My feeling is that when the government or a housing association or the media or a specialist disability organisation is seeking to canvas the way forward on accessibility, perhaps ‘The Horse’s Mouth’ may be a good starting point. Why is it that so much accessible planning, design and media exclude the very people it is aimed at? Surely, we should be involved. Shouldn’t the main people on an accessible planning committee be disabled? How about members of every other type of disability planning organisation? Why are we not the first people asked to comment on the lack of accessible housing? We have a voice and brains. It seems utterly absurd that this has not been pointed out before. I do realise that there are one or two who seem to speak for us all; but most of the voices we hear are the able-bodied members of associations, political parties, the media and companies speaking on our behalf. Yes, many have an experience of someone with disability, but they lack first-hand experience. Can we please be heard.
We have come to see care as a professional provision rather than a natural act that flows out of our humanity. Caring is a human emotional response to the needs of others and it makes us feel better when we do it. One thing that we have seen very clearly in this current crisis is how much people have cared for each other. That natural desire we all have to look out for our neighbours has come out very clearly. We have spontaneously acted in caring communities.
Community is something that sounds old fashion and twee, but it is the heart of who we are as human beings. Society today has fractured; we have isolated ourselves into cliques and solitary units. Yet it is this resulting separation that causes a lack of community and a lack of mutual support. People are left alone and in need, so that help has to be bought in even for the simple things like company and shopping.
We are at a time when the care bill in this country is crippling to our economy. Yet much of that care is not nursing or professional level care. Instead, there is a tremendous amount of sitting service, monitoring, checking on the elderly and infirm, shopping for those who are unable to do so themselves. Is it just me or are these things really only the purview of professional care services? When did our society become so fractured that neighbours no longer notice if someone is in need? When did we stop helping each other? When did asking a neighbour if they need anything stop being acceptable?
I am not suggesting that neighbours supply a nursing level of care, nor that they offer a washing and dressing service. That would certainly bring a new meaning to getting to know the neighbours. Instead, I am suggesting a return to that sense of community that we have lost. But which we obviously still desire. Look at the spontaneous voluntary groups that have sprung up around the country during this crisis. Look at the way people have helped and supported each other and found fulfilment in that opportunity. There is a very clear desire to help. A sense of community is obviously still there.
In the recent Habinteg Essay writing competition I put forward a plan for accessible housing into the next 50 years. I suggested that we need to focus on re-building community in our future housing projects. But we can also build community in our existing housing. Community is built by our attitude as well as the surroundings we live in. It can be improved by better layout and provision of housing and community venues, but it can also be realised through the way we look to the needs of others.
I would like to suggest that we continue in the way we have started. Where voluntary groups have formed to support neighbours during the crisis; keep them going in a new form. Where we have started to look to and communicate with our neighbours rather than focus inward; keep that outward focus. Care is not just a professional job supplied to those in need; care is for all and we can all care for others. I am not suggesting that we replace true professional care needs; just the everyday helps that we always used to offer to friends and neighbours.
I didn’t win the competition, but I thought as the issues I raise are important I would share the essay as it made it to the final.
In 50 years’ time the nature of impairments may change significantly, and the proportion of disabled people in the population is set to increase. Taking these factors into account and retaining the social model of disability as a central approach, how should the design and construction of homes and neighbourhoods develop over the next five decades in order to be inclusive regardless of impairment.
The Social model of disability says: “… that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things” . Assuming this to be true we need to establish a working criterion for ‘disability’.
‘Disabilities’ are not all the same as this term is used to describe a multitude of impairments from complete inability of a person to function unaided by medical intervention (i.e. a ventilator) and 24/7 care; to those who appear externally to have no issues but suffer so called ‘invisible disabilities’. The needs of someone with an ‘invisible disability’ such as deafness, cannot be met in the same way as the someone who needs medical intervention and 24/7 care. Even a less dramatic comparison such as between someone who cannot walk and someone who is deaf, can be used to demonstrate the wide variety of needs and the vastly different ways that those needs must be met. Both are very limiting problems with a complex variety of issues uniquely their own, but each solved in very different ways.
For me physical impairment dominates. I cannot walk and need carers to wash and dress me. My food must be prepared for me and everything brought to me. I must have a home with ramps and wide doors. I need a ceiling track hoist and a wet room. These are a few examples of the adaptations that I need to cope with my impairment. Someone who is profoundly deaf may need a visual doorbell and text phone, perhaps a loop system if they have any hearing. These are just a few examples but obviously very different ones to my needs. Yet both would count as ‘disability’. This simple comparison shows that the term ‘disability’ cannot be used universally to describe all those of us with impairments without additional information.
Given the fact that ‘disability’ is such a wide ranging term providing one type of housing, care or provisions generally for ‘disabled’ people is like trying to provide a written pamphlet for a roomful of people from different countries all of whom speak different languages. It is an impossible task. You cannot succeed to provide all things for all ‘disabled’ people in one way. Yet as a nation we have set out plans to help ‘disabled’ people as if we were all the same. We cannot all be treated the same. There is only one common ground that I can see, we are all human beings with human needs. We need each other and the biggest lack in modern society is a lack of community. We have become isolated and boxed in. Many of the issues surrounding ‘disabled’ people are to be found in society at large and stem from that isolation.
Therefore, the first and greatest need which must be addressed in homes and neighbourhoods over the next five decades is a restoration of that sense of community. This is both a social and a physical change which will bring mental and physical health benefits to our society. It may seem to be unrelated to the question but in fact unless we deal with the issue of community, we cannot solve the problem of homes and neighbourhoods. The two are interrelated as I will endeavour to show.
We have come to believe that self-reliance and isolation are the ultimate goal for our lives. In pursuing this goal, we have, as a nation lost sight of the benefits of being alongside others. This has meant that as a society we have fallen in a black hole of care. Too many people needing care and too little money and too few people to provide it. Likewise, we have failed to provide suitable accommodation because we have tried to approach the problem in the wrong way. To solve this problem, we must first solve the underlying social issues that cause it then the issue we want to solve can be tackled.
If we look at society as it is now, we can see the outworking of the process of isolation at every level of society from families to neighbourhoods to work environments. Families have become smaller networks involving perhaps just one parent on a regular basis, wider family being either unavailable or at a distance. Neighbourhoods have been created where there is no natural interface between neighbours. This is sometimes an outworking of differing work patterns, but often exacerbated by the lack of common areas to meet or just come across others. Workplaces have become more controlled especially for lower paid workers. Either offering zero hours contracts which limit work contact with others to times when work is actually carried out and therefore removing social interaction with work colleagues or limiting numbers of staff to the point where workload precludes time for social interaction. Time outside work becomes a premium that must be split between competing needs. The results of all these factors is a lack of community at work or in our neighbourhoods and families which then feel stretched and often fractured. The result is a tendency to hide in our sanctuaries and pull up the drawbridge. Stress causing us to not want any further interference from outside. All sense or desire for community is lost and any natural care and concern that people feel for neighbours go. Research has shown that isolation has a negative effect on the elderly, even reducing life span. It seems self-evident that this will apply wider.
One thing that is quite apparent in this current Corona Virus Crisis is the way that community is growing. Ironic considering the instructions to isolate. But community is not only about being face to face, but also caring and understanding. Groups are spontaneously forming in towns, villages and cities to help and support neighbours and the vulnerable. One example is in Gloucester. Neighbours are talking to each other, albeit at two metre distance. The reason for this change? Time and being at home will play a part, but also a sense of a common goal. People naturally want to act as a community, they miss it and enjoy the sense of working towards a common goal.
I have laid out a wider social issue than ‘disability’ because it fits into the whole. Being impaired does not exclude us from society, we are still part of the whole picture and very much aware of the problems. To deal with the issue of homes and neighbourhoods into the next five decades we must deal with the whole of society. The reason we have so badly failed in the past is because ‘disability’ has been seen as a problem to be solved separately rather than part of the whole picture of society.
For change to happen it must be included in the whole social planning process then we can see real change. For that change to happen there must be the political will. Community is the key, together as a mix of different abilities and backgrounds we can form a diverse group who support and encourage each other. Taking encouragement from the fact that people do want to act together. We have spent years becoming more and more isolated. People no longer know or trust their neighbours, yet we have seen that can change, people want it to change. What is needed are new housing estates with localised shared facilities, almost like mini villages. Going back to an earlier idea. These would naturally form communities with a wide age range and social background. Schools and shops, community centres, medical centres and other facilities would serve each community. There need to be areas where people naturally come together. The variety of impairments represented would fit into the general mix. Housing would be varied and cover all needs. By bringing people together in community there is a tendency to increase the pool of care for each other. Not everyone needs professional carers. Sometimes we just need a neighbour who will take us shopping, a friend to chat to. Many professional care companies provide ‘sitting’ services. These are basically carers who are there just to be company. If we again lived in community rather than isolation, then we would be company to each other. I am not suggesting neighbours provide washing and dressing for those of us who need that. But there are many things that friends and neighbours used to do and would be happy to do, which are now covered by paid carers. In a society struggling to cover such costs and provision, this is an obvious advantage.
To provide housing that meets the needs of all impairments would be impossible in one type of house. Indeed, I see no reason to attempt such a thing. I understand that it may seem convenient to lump together all types of impairments. But it cannot work in practice. I am aware of housing associations who build houses which are suitable for wheelchair users as standard. What I don’t understand is why. How many wheelchair users are there? Surely it makes more sense to provide appropriate housing rather than build unnecessary features and waste money and space.
A property suitable for a wheelchair user needs wide doors and halls, extra turning space, a wet room, possibly ceiling hoists, raised kitchen units etc. To provide this for all ‘disabled’ housing would surely be unnecessarily costly and wasteful. A property for a non-wheelchair user needs to cater for the impairment they have. A blind person may need Braille signage and clear ways through the property. A deaf person may need visual clues to doorbells etc. Someone who struggles to walk needs a property on the ground floor. Housing for able bodied users have different requirements. A mix of all these properties in each development makes most sense to build community.
The neighbourhood is another important consideration. If every new building project had all suitable types of properties, then a community of different people could be formed. This would also have a secondary benefit of preventing ghettoization of ‘disabled’ or elderly people in special properties. By doing that you prevent the creation of viable communities.
In all these instances the key issue is suitability rather than uniformity. There is an adage used in the Estate Agency business, ‘Location, location, location.’ The location of a property will ultimately make the suitability of it work or not. It will not be suitable to place a person suffering from an impairment who has no transport at a distance from any amenities. Nor would it work to place a person suffering from an impairment with a vehicle in a property without nearby and suitable parking. This applies wider to families or elderly with or without cars. So, within a development positioning of properties is important but also the suitability of particular developments to some types of impairment would limit their suitability for some potential residents.
Cost is of course another limiting factor for most ‘disabled’ people. Some are still able to work or have independent income. But for most we are reliant on disability benefits for our income. For those able to buy a property it would need to be available at a subsidised price on a government scheme. Affordable housing is a wider issue than just for ‘disabled’ people.
We need to be planning a large-scale building project within all new builds in every area. Each project must include housing of different types. Housing that suits wheelchair users and non-wheelchair users with other impairments. All built in a community of housing that suits a variety of family types, ages and social backgrounds. There need to be common areas where people can naturally meet. Things only change when we choose to change them. We are too used to moaning about problems and creating reports about issues. If we really want to make a social change then we need to stir up the political will to make that change. Back in the Victorian times when the middle classes were shocked by child labour, they lobbied for change. Stories were written to stir up public feelings but, in the end, it took campaigners to create legislation ultimately things must happen, and political change occur if we are really dissatisfied with how things are now. It is up to us to make that change.
Have you ever looked at the front of a wheelchair; no? I am not surprised, unless you use one or have a relative in one, why should you? So next time you see a wheelchair out and about, take a look. I am going to get in so much trouble now. People are going to be staring at wheelchair users’ legs and feet. That could be most inappropriate if the user is a young lady and the person staring a man. So, use discretion, I am not suggestion anything untoward here, just an observation of a simple fact: Wheelchairs are designed in a very odd way.
I am not sure whether a wheelchair users’ feet are seen as less important than a wheelchair or it is just thought that a lot of wheelchair users have no feeling in their feet. Either way our feet are the bumpers on wheelchairs! That is what you will notice just before you are arrested for inappropriately staring at wheelchair users’ legs. I pointed this out to the wheelchair OT at my latest assessment, our feet being bumpers, not about staring at people’s legs. He seemed to miss my point about my feet being at risk and talked about the damage done to the wheelchair leg rests. Apparently, they bear the brunt of impacts and are not up to the job. Mind you my toes were not really built for impact either. Obviously, I do care about the damage done to my wheelchair, but call me selfish if you want, I rather value my toes. I have quite a large power wheelchair and it can drive my feet very heavily into a wall or door if I am not careful. I do try very hard to be careful. But there are occasions when a tight corner or an unseen bit of furniture surprises my toes; and me. It is not a pleasant surprise.
We once travelled in a taxi supplied by the train company when the trains were cancelled. They booked a taxi that was too small for my large power chair. I could see that fact immediately and pointed it out. But who am I? Just a wheelchair user. So, the taxi driver overrode my objections and tried to cram my chair into his cab; insisting it would fit. My feet were telling me it did not fit and it took a lot of argument before he accepted that I could not go any further forward and that my feet were already crushed against the seating. Still the OT would have been pleased, the leg rests never touched the seats and so were undamaged. I wish my toes could have shared in their rejoicing.
I asked the OT why wheelchairs do not have a guard around the users’ feet. His answer was more focussed around the weakness of the leg rests rather than protection of the user’s feet. To be fair to him, I think he was trying to say that the leg rests are not a strong part of the chair anyway so you cannot use a guard around them to protect the user’s feet. For my part I would use a car analogy. Passengers in a car are protected by a crumple zone. In the case of an accident it is considered acceptable to sacrifice part of the car to protect the occupants. It seems human beings; if they are car passengers or drivers, are highly valuable. Whereas, judging purely on experience and observation, wheelchair users are not as valuable in the eyes of manufacturers or the legislators who decide the specifications of wheelchairs. Perhaps a few of the people deciding on the safety issues of wheelchairs need to try out a few days in a wheelchair?
Isn’t it time that this changed? Are we as wheelchair users less important of protection than car users? I have highlighted our feet, but wheelchairs are not fitted with proper restraints as standard, nor is there a national standard for their safe transport in cars, taxi’s, trains, coaches and buses. Each wheelchair has its own position and type of fixing point. Likewise, the restraints used in the different forms of transport vary greatly in type and safety.
Perhaps we are seen as a silent minority or an unimportant part of society. Maybe some see us as inconvenience or a drain on resource already. In these difficult times perhaps, there would be many who would question raising any issues that would cost anything to fix. But I would answer this; should we wait for a convenient time before highlighting a potential danger? When is a good time to say that something is unsafe, unfair and needs urgent attention? Now has to be that time. Anyone who has experienced these issues first-hand will understand. If you don’t understand try spending some time in a wheelchair, especially a powerchair. Negotiate tight doorways and corridors. Travel in taxis (smaller ones not the big vans, they are rare) and on buses (that is an interesting experience in a powerchair). As for trains, they are an area all of their own. Even have a trip down the high street and into shops. When you realise that your feet are the first thing that will impact whatever is ahead of you then your perspective will change.
I will end with one last thing to point out about all this. I wear slippers most of the time, even out and about in my wheelchair. That’s because my feet swell, and shoes are extremely uncomfortable. Plus, shoes are not exactly necessary as I cannot walk or stand. I understand that slippers make my feet even more vulnerable, but this is very common for permanent wheelchair users. Those of us who cannot stand up. In fact, I know of many wheelchair users who wear just socks or a kind of flip-flop. So, don’t assume that footwear could be the answer to good protection. Suggesting that a hardened shoe would do the trick just wouldn’t work. Apart from sizing, comfort, and shape there is the issue of the whole foot being attached to your ankle. When an impact occurs, the whole foot is pushed back. A large shoe would just stick out more an exacerbate that effect.
The only answer that would work is to fully protect the user’s feet with a bumper that is not our toes. If each leg plate had a protective strip around the front that would bear the impact. It is true that the leg rest might break in a bad impact, better that than the user’s toes. The leg rests would act like a wheelchair crumple zone. At worst, the whole of a user’s leg would be pushed back a little under the chair. But our toes and feet would be safe. I for one like that idea a lot.
No one could accuse me of being fast. I have been in a wheelchair now for 2.5 years and I realised the other day, the wheelchair is my mobility. Yes, I know, earth shattering. Bear with me, what I mean by that is, it’s how I move around. Another earth shattering revelation. Sounds obvious, but here’s a thing, when you are on your feet walking, you just… well walk. If you want to go somewhere you don’t think about it consciously you just do it. In a power wheelchair and I assume a manual, you have to take a separate action to go somewhere. In my case a joystick. So I am sitting in my chair and I want to turn around and fetch something behind me. I have to push the lever right or left and rotate the chair. All this might sound really straightforward and simple. But think for a moment, it’s an extra level of action to achieve a simple result. I want something just out of my reach, I can’t just swivel and get it I must power the chair around to get it. Something is a little too far ahead of me to reach, I have to push the joystick forward to move the chair and therefore me in reach. It was that realisation which hit me the other day. I no longer rely on my body to get me to somewhere, I am relying on a machine. Just a quick aside, I guess as babies we learn to use our bodies as a kind of machine to do what our brain wants. By the time we are an adult it’s automatic. But a wheelchair is never going to be s smooth and intuitive as the human body.
The dawning of that realisation was quite powerful for me and caught me out. I had to stop and process it. Because it means so much more than it sounds. It is about independence, mobility, reliance, technology, artificial movement, disconnection between aim and action, re learning movement and a whole lot more.
These days most aeroplanes are operated by a ‘fly by wire’ system. What that means is that when a pilot pushes a lever or operates the steering yoke, that movement has no direct connection to the thing it will move. Instead it sends a signal to a microprocessor which eventually tells the ailerons, wheels, brakes or whatever what to do. That may not sound important or significant, but think of it this way. When you steer your car, the steering wheel turns a physical ratchet that turns the wheels, yes with power steering you get assistance, but it is still a physical connection. When you operate your car brakes you push onto a pedal that compresses fluid that directly presses onto brake pads, again yes there is assistance built into the system. There may well be high tech cars that are more like aeroplanes. The point I am making is that when you do something which is one step removed from he physical there is a disconnect. You experience what I mean when you operate your computer or smart phone and it doesn’t respond immediately. You know how frustrating that feels. Pressing on a mouse or the screen and nothing happens. Some may argue that an electronic interface is faster and better than a direct input from a driver or pilot. Certainly I can’t see any way a pilot could directly pull a lever and operate the gigantic ailerons on a modern jet. Although whenever I find my computer freezing up I do wonder at the sense of that argument. It does rather put me off the idea of self driving cars. I think I would like to see a PC or smart phone that works 100% of the time before I put my life in the hands of a computer driver. But my point isn’t what is better, just the fact there is a disconnection. We can accept that with machines. But when it is our own body, it’s harder to accept. The distance between action and reaction, aim and result can feel a long way.
I was thinking the other morning just how complex and time consuming it is for me to get up. When you are disabled everything takes so long. That’s because equipment is needed to enhance, enable and complete the things I do. Mobility is really just one small part of that and my realisation the other morning was an eye opener for me. I hope I’ve lifted the lid on it a little for you.
Have you ever stopped to think about pain? We only see it as a bad thing, but pain is there to protect us. Without it we would do stupid things, if you do stupid things anyway then I am not talking about you. But pain protects us because without pain stupid actions wouldn’t hurt. We would be unaware when we injure ourselves or cuts go septic. We would strain muscles beyond their capacity or run on broken legs. You only have to observe someone who is drunk to realise the damage they cause themselves and others when they are unaware of pain. The same is true of someone high on illegal drugs, or some legal ones for that matter. So for anyone whose idea of fun on a Friday night is getting blotto and having a fight you won’t get this. The rest of us will understand.
Then there are diseases and medical conditions that affect our sensation, what we feel physically. Leprosy is one of many diseases that destroy the nervous system, I know it also causes other things. But I am focusing on its preventing people from feeling pain. The result is that even a small injury to a foot, hand or eye can become so bad that permanent damage or disability is caused. In diabetes loss of feeling in feet can result in damage to feet. Pain is needed as a protection. Peripheral neuropathy can feel like you are wearing rubber gloves when it affects your hands or socks when it affects your feet. It’s one of the conditions I have and I remember when it first affected my face. I wasn’t sure if I was having a stroke. There was no droop, no problems with speech or left side problems generally. I just felt like I had been to the dentist and had an injection to numb one side of my mouth. You know that sensation you get an hour or so afterwards as it wears off? When the effect spreads to the whole of one side of your face, that tingling numb feeling? That is what it felt and often feels like. I actually tested it by sticking a pin in my face; no sensation at all. As an aside I do get loss of feeling in lots of other areas. But that first time it affected my face and nothing else.
I wrote a blog about losing the sensation in my left arm and calling 111 ‘An unexpected emergency’ after I realised I could stick pins in my left arm and face without feeling it. There’s a common theme here, it sounds like whenever I lose feeling I stick pins in myself. I think it’s because I can’t quite believe the feeling has gone so completely. That’s the problem, we need pain. Without it we can stick needles in our arm, it doesn’t hurt. We don’t know we are injured. There is no warning. If I was stupid I could really have injured myself.
Pain works in two ways. One way is the signal sent from nerves to brain as a result of pain stimulus that could be harmful. A sort of ‘stop doing that’ or ‘slow down your injured’ kind of signal. The other is the nervous system firing off pain signals with little or no stimulation, in this kind the pain is regular and unrelenting. Ironically I find that areas of my body that lose normal sensation can still feel pain from these miss fires. The result is the same, severe pain, the cause is different. I am no medic so don’t take medical advice from me. But from my understanding pain that comes from the nervous system misfiring is not easy to manage with tablets. The reason being that the cause isn’t inflammation or temperature or infection. The pain receptors themselves need cutting off or blocking. I am sure medics reading this are throwing their hands up and saying how I am over simplifying it all. But I like simple, I understand simple.
Migraines are an odd kind of pain. They are unlike other headaches. Many headaches are caused by tension, muscles in the neck or face getting stressed. These respond to exercise and things like ordinary pain killers. I guess because of the cause. But I am told migraines are caused by the blood vessels in your brain constricting then releasing. When they constrict you get all sorts of weird effects, auras, odd smells, visual effects, tastes, loss of feeling in various places. Then when the vessels release you get a thumping, agonising, blinding headache that seems unresponsive to pain killers and makes you susceptible to light. It’s difficult to see purpose in migraines. I am told that everyone can potentially get migraines, but for most people you would need to go without food or sleep for days and be really stressed. For a migraine sufferer a bar of chocolate, glass of red wine, bright sunlight, missed meal, stressful day or poor night sleep can cause it. I guess a migraine is meant to be the body’s protection to over doing it. But for some of us we get migraines too easily. Migraine pain needs a whole special kind of treatment that I am not going into here. I will just say, it’s not just a headache.
Pain is just so strange because, while it’s necessary and a protection to us, it can so dominate our lives that everything else is pushed out. Chronic pain (meaning ongoing, long term) is really hard to cope with. It feels like the body has gone haywire. If the body is so overwhelmed by pain that everything else is drowned out, then it’s hard to see how it is functioning as it’s meant to. For example: if you were going to set up a signalling system of lights on the ground for an airplane to land at and instead you just flood light the whole of an area, how would a pilot know where the airfield was? In the same way if pain is a warning system, but you get pain all the time, how do you know when and what to listen to? Pain only works effectively if you get it occasionally and in one area at a time. Otherwise it’s like the boy who cried wolf, we can end up ignoring it.
I started by saying pain is an odd thing. I stand by that, or in my case sit or lie down by that. Pain is very peculiar. We need it, yet we hate it. We would probably all choose to do away with it. Yet without pain we would be in severe danger. Pain protects us and keeps us safe. But pain can get out of kilter and cause issues. We can end up trying to control it and failing. It can so dominate our lives that we ignore it. One thing is certain we cannot do without it.
Tuesday 14 April, 2020 (S.B. on her work as an essential worker in a Wellington NZ hospital during lockdown)
I’ve never been afraid of hospitals. I actually find them sort of comforting. I was in a burns unit as a pre-schooler and I wonder if it imprinted on me somehow. The faintly antiseptic scent. The uniforms. I even like the smell of mashed potato that I sometimes get a whiff of from the meal trolleys.
I do ultrasound scans of hearts – called echoes – for a living. People either get it or they don’t. They look at the screen with the same interested awe as me, or they say “is this what you do all day?” And I say, “Yep, hearts all day long.” I’m lucky, I really like my work. But it wasn’t a life-long dream – I never even knew it existed. I’d been overseas and when I came home my brother was sick and in hospital for a long time. I remember walking around the corridors thinking ‘I’ve got a science degree, I must be able to get a job here.’ But right now I’m a little afraid of hospitals, and of my job. When people come for an echo I get them to undress to the waist and lie on their side facing me. I say: “It’s like a pregnancy scan, but looking at your heart.” When I put gel on their abdomen and rest the probe on their skin they say “Is it a boy or a girl?” and I smile and say “Twins.” Often, they are nervous. Their heart rate gives it away. But usually by the time I’m finished – about half an hour later – the rate has come down. We’ve talked about the weather, their family, their plans for the weekend. There’s no way to do an echo from two metres away, or in less than fifteen minutes. You can often smell the coffee they’ve just had, or their brand of soap. It’s hard to smile at someone behind the masks we now wear. Hopefully my tone is chirpy – I’ve tried to be more expressive with my eyebrows. I’m very lucky to have a job, to have an income. My commute time has halved, and I can park in hospital grounds without charge. Yesterday I skipped a supermarket queue with my ID card. I have somewhere to live, and food and electricity and water and firewood. When I drive home I go along Paekākāriki’s The Parade, to greet Kāpiti Island. I see the locals out walking in their bubbles. My bubble is me, my husband, our daughter and son, and the dog – and all the patients I’ve scanned and will scan – and all the people in their bubbles. I think about actual bubbles and surface tension, and how the bigger they get the more unstable they are. At the end of the day I do what I can. I disinfect my pen, phone and swipe-card. I leave my work shoes behind, and change out of scrubs. I wash my face, hands and arms to the elbows. I drive home and leave my shoes in the car. I wipe down the steering wheel, the gear stick, the door handle. I go into the house by the back door and straight into the shower. The clothes I’ve come home in go into a hot wash. I’ve taken off my wedding ring and pounamu. We’ve cleared out the spare room, but we’ve only got one bathroom. We’ve bought plastic plates and bowls so if I get sick no one has to handle dirty dishes. We’ve got a sort-of-plan except for if or when I should isolate myself from them. Lately when my daughter comes for a cuddle she says “I’m scared.” One time I asked her what I could do to make her feel better. She said “never stop hugging me.” Online everybody is exercising, baking, busy in their gardens, and posting creative schooling ideas. It feels like they are inside a different kind of bubble, but one that is shared. I call my sister the midwife, another sister the nurse. We grumble about bookings, PPE, infection rates in overseas healthcare workers. It feels good to speak in a common tongue. There was early rain but this afternoon the sun came out. We made paper Easter eggs for the window. There were only 29 new cases of Covid-19 in New Zealand. I hugged the kids.
There are a lot of assumptions made about disability by able bodied people. A common one is how great it would be to have a free parking space near the shops. Let me debunk that one first. Most councils now charge for blue badge spaces in car parks and they are not always nearer to the shops. Yes, it’s true, if you can find space on a yellow line you can park for a limited time. But that’s a big if and you still can’t block roads or cause problems. Probably the biggest advantage should be blue badge spaces in supermarkets, but often they are full or being used by non badge holders. They don’t tend to be policed well. So you don’t really get a great parking space.
Another assumption is that you get lots of Government cash, benefits, grants etc. But what that ignores is the cost of everything with a disability tag. Put the word disabled in front of it and any product is loaded in price. Holidays, when possible at all are complex and often expensive. If, like me you need hoists and wet rooms, the property availability is short and price loaded. Travel should be the same price as for able bodied, but sometimes it’s only possible by taxi. When I was able to walk I used to walk for miles, often choosing to park a long way from town centres. If you can drive then often cars need adaptation. Yes there is Motability which can provide a car, but many people don’t realise that is paid for from your disability benefits, it’s not a free car. So yes there is extra government money for disability, but it doesn’t cover all that you need for such a limited life. You might argue that other countries have even less. If that is your way of looking at life, then so be it. I would rather aim higher.
Then there is the assumption that being in a wheelchair or a bed must be a restful option. The number of times people have looked longingly at me when I have wheeled and they have walked along and they say things like: ‘oh you’re so lucky, I wish I could ride along.’ Or ‘can I have a lift?’ Disability is a complete package, pain, inconvenience, limitations, frustrations, and everything that entails. You don’t get to just choose the riding along in a wheelchair bit. Or lying in bed bit. In fact before I was ill I never managed to stay in bed very long, except to sleep. I never lay in, so being in bed all the time is a trial for me not a luxury.
So if you are thinking disability sounds desirable or a bit of a doss; think again. No one in their right mind would chose a long term illness or disability. People might pretend to be ill to get benefits. But such cases are very rare. Much rarer than they appear from the frequency of reporting. It is much more common for people and companies to cheat on their taxes and defraud the government in other ways. No we are not to be envied, but I am not asking for pity either. What’s needed is respect and understanding. No one can fully understand another without living their life; that cuts both ways I know. I respect and understand the hard work of those who are able to work. Respect is a two way thing.
I have always loved photography. Back in the 1970’s an era that I have read in the history books, OK an era I lived through, I first discovered it. In those days it wasn’t digital, no, you needed chemicals and enlargers to process photos. I took and processed black and white photos. As a photographer I was always trying to capture that perfect moment, to freeze that moment in time when everything looked so beautiful or dramatic or interesting.
My first job was at a photographic studio in London. I worked in the black and white processing lab. We hand processed and printed the photos from the studio and also from other professionals. This included some smaller magazines that didn’t have their own in house facilities. So I would often be printing dramatic, news worthy pictures of people. One common feature of these was that it caught the person in a pose or a moment that ‘said’ something. Think about the cover photos on magazines and newspapers or posted on social media. They freeze time at the point of the photographers choosing. That frozen moment could be funny, dramatic, sexy, idiotic, stupid, poignant, sad… well you get the idea. Here’s the thing though, it’s a snapshot taken in around 1/60 of a second. So a very brief moment of time. It can be that fleeting a moment. But once taken it is then able to be studied at length, commented on, laughed at and criticised.
Here is why I have written this blog. I saw a set of two photos that are the marker photos for a video of an advert for George clothing. They are of a young lady with ME who, according to the tag line did the photo shoot to raise awareness of ambulatory wheelchair users. That’s people who have wheelchairs but don’t have to use them all the time. I assume the awareness she is wanting to raise is that some illnesses can be just as limiting even though you don’t need to be in a wheelchair all the time. The words that accompany the picture certainly give that thrust. But a picture, especially a snapshot is far more powerful at affecting ideas than the accompanying words. So what do these snapshots show. One shows the young lady balancing unsupported on one leg, in a dance pose, the other shows a different dance pose alongside someone else but equally difficult and strenuous. If it wasn’t for the wheelchair behind her you would just assume it was the picture of a dancer. In neither picture is she touching the wheelchair. She does in the photo shoot and video generally, but remember this blog is about snapshots.
What message do two snapshots give? That a fit young lady likes to dance by wheelchairs? If you read the caption and know she has ME, then you modify that to something like: ME doesn’t stop you dancing, or you can be just as fit and strong in your legs with ME as without. These are of course nonsense conclusions about ME. It is an illness that dramatically limits the body’s ability to exercise. A repeated action, by repeated I mean 2 or 3 times can totally exhaust a muscle in someone with ME. Most people I know with ME would struggle to balance well much less dance. It is an up and down condition, but even on its best days someone with ME does not feel up to dancing around. Plus the effects of such a thing would put an ME sufferer in bed for days afterwards.
The problem is that ME or CFS as it is now called is a diagnosis of exclusion and many conditions can end up with that diagnosis after excluding other things. There isn’t a single diagnostic test for it. I am not very happy with the way doctors hand out the diagnosis. It seems a way of preventing them having to keep investigating. I speak from experience. I was given a diagnosis of ME in 1994, no MRI or very many tests at all had been done to rule other causes out. In 2007 further tests showed that I had peripheral neuropathy caused by long term nerve damage from pernicious anaemia undiagnosed in the 1990’s. It wasn’t until 2015 that a full MRI was done and showed further spinal complications. So you will understand when I say ME is not a brilliant diagnosis. I have no idea if I ever had ME because those other conditions have very similar symptoms. Had they been looked for and found in 1994 would they have said ME? Who knows, I realise one can have multiple problems.
Back to these snapshots. If you freeze a moment in time you are going to give people a picture of that moment. Whatever the lady’s intentions were. The result will be that people will see a healthy young lady dancing by a wheelchair with a headline that tells them she has ME. This will feed into an existing prejudice that says many illnesses are false, many people in wheelchairs could walk but choose not to. It will pour oil on the fire of disbelief. What it won’t do is make people think, ‘oh yes, of course some people can still struggle to stand or walk a little when ill, but still need a wheelchair at other times.’ That’s the message she wanted to put over. I would have thought standing by the chair would have put that message over. But what photographer is going to take that picture.
(If you haven’t got a sense of humour, don’t read this)
The trouble with wheelchairs is the wheels. Obvious I know, but true nevertheless. You can’t go up pavements, stairs over deep mud, snow or up mountains. We need a means of getting about that mimics the human leg. An exoskeleton that supports the whole body. Anyone who has seen Iron Man will be ahead of me here. In fact you will have overtaken me and headed back to the changing room laughing. OK, so there are a few problems. We don’t have the technology, huge cost, the power source in his suit is make believe. It has a computer that is beyond unbelievable. Hey, who’s counting? Oh you are. Well bear with me.
There are some positives to the idea. Just think about it. You wear an exoskeleton of metal that basically does all the standing, walking and who knows maybe flying for you. Imagine the possibilities you are out walking, yes walking down the high street. Someone goes to push your disability equipment without your permission (your Iron Man suit) and you fire one of those hand lasers. No ifs or buts, problem sorted. Someone gets shirty about your disability or questions your having a Blue Badge, mind you with an Iron Man suit… anyway you blast a hole in the ground in front of them. Argument ended! Or maybe you just fly off; dramatically.
Just think of arriving at venues. No more queuing up, you just fly in and land centre stage. Of course it would be a bit bulky to wear all the time. But the suit would just fly off into a suitcase, like in the movies. Then when you need it, you press a button or call your computer butler and you are in it again. No hoists or helpers, all automated.
There may be slight issues of cost. Perhaps the NHS might baulk at funding the many millions each suit would cost. So maybe a voucher scheme? Fundraising? Anyway I can’t think of everything, I am just the ideas man. Did they say to Edison, ‘no one would be able to afford to electrify their home?’ Well, probably, but that’s not the point. Cost isn’t everything, OK so maybe it is rather important.
Exoskeletons are most definitely the way forward. Fully supporting and doing the work of walking, running, flying, fighting, oops I mean whatever, it could be washing up rather than fighting. Imagine the skies filled with flying ex wheelies. What would we call ourselves, Flyees? The mind boggles and I hope chuckles. But there is a serious point to my nonsense. Some form of exoskeleton might work, not Iron Man style, but a body fitting and supporting robotic aid. Maybe a future idea.
I was reading the other morning and I thought ‘hello, what’s happened to the writing?’ I couldn’t understand where the words in the middle of the page had disappeared to. Then I remembered that this had happened before. That sounds like the line out of a film. ‘It had all happened before, and it would all happen again.’ What movie is that from? Yes, all you clever lot out there it’s JM Barrie in Peter Pan echoing the, Bible the book of Ecclesiastes. I think it’s also been used in Battlestar Galactica among other movies and series. So, had my eyes become youthful, childlike, like Peter Pan? No that’s not what I’m saying. I remembered that ten years ago I kept losing the central vision in my right eye. The GP I had at the time recognised it an ocular migraine. I was put on medication that has stopped the problem for ten years; it seems to be back.
The loss of vision lasted about an hour, then it went. That’s good I thought, until a bright shining light appeared across my right eye. It was brighter and more vibrant than any visual migraine light shows I have ever had before. I honestly thought that there was some sort of light sabre being waved around in front of me. Now I’m onto Star Wars; is this a movie trivia blog, I hear you say; no, I reply. The light was just so distinct and bright it reminded me of a light sabre. Although unlike a light sabre it had sparking colours at the edges. Ah the joys of a visual migraines.
For anyone unfamiliar with ocular migraines and who might confuse them with migraine auras let me quickly explain. An ocular migraine is where you get a series of visual disturbances caused by blood vessel constriction in the eye itself. A migraine aura is where blood vessel constriction in the brain cause a series of problems which make you hypersensitive to light, smell, touch and then leads onto excruciating pain. You can also get visual disturbances. I was therefore hoping these visual disturbances were an ocular migraine and not an aura, warning of imminent pain.
There was a point when I started this. My vision loss was central, looking straight at the page of writing I couldn’t read anything. But I could move my eyes to one side and use peripheral vision. That way I could just about read, albeit blurry. Of course I could have just used my good eye, but I don’t see well with one eye. It got me thinking sometimes we need to look at problems indirectly. Instead of staring at them head on so hard that we lose sight of the issue. We need to look to one side. Allow our minds to go into idle perhaps. Don’t focus on the problem, look to one side. One definite result will be a lowering of your stress level. Sometimes a result can be seeing a new way forward. It’s just a thought if you are struggling with an irresolvable problem. I speak from experience here.
Just to round off I didn’t get a full-blown migraine. It was only an ocular migraine. At least it got me thinking.
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I like Jane Austin, there I’ve said it, get all your ridicule out of the way now. Oh, you don’t have any. I really like Jane Austin, she was an author ahead of her time. Humorous, clever, insightful and radical. She was able to put over ideas about gender inequality in a way that even men at the time found acceptable, didn’t they? Well they should have done. She has a timeless quality and her books have been re imagined in so many ways.
Sense and sensibility is one of my favourites, along with
Pride and Prejudice. In Sense and Sensibility Jane contrasts a sensible sister
with an overly emotionally sensitive one. It can appear at first reading that
the sensible sister, Elinor, is the heroine the one we are to see as right.
Marianne, the overly sensitive one, seems so flighty and over emotional that
it’s hard to emphasise with her. But, as in real life both sisters are on a
journey. Marianne needs to gain more sense, but Elinor needs to get more in
touch with her emotions.
Why on earth would I quote from that book? What relevance is
there to me or you? I have been reading a lot of posts on disability ‘wheelie’
sites about comments non wheelies make to my fellow ‘wheelies’. I have also had
a lot of, well let’s say ‘insensitive’ comments made to me. It got me thinking,
‘how do we respond to ignorance and insensitivity?’
It seems to me we can often be like one or other of the
Dashwood sisters, Elinor or Marianne. Either too sensible or too emotional in
our response. The sensible being to ignore the person being insensitive. The
emotional being to get angry and upset, then shout or be rude back. Then it
struck me maybe a better way forward would be somewhere between these extremes.
Emotions are going to hit us, how can they not. If someone says something
stupid to us. Accuses us of malingering or acts as a disability police, or
maybe just pushes us unasked in our wheelchair. But we don’t have to respond to
that feeling. We can draw on our logical, sensible side to realise that it is
ignorance that causes such comments. How can people understand what they
haven’t experienced. How can we blame people for believing the lies in the
media. We need to help people understand, teach, explain, use our emotional
response to drive us into a passionate defence of disabled people and our
sensible side to prevent ourselves just ranting and getting angry. The world
needs to gain insight into disability; not gain more reasons to shy away from
The point of this post is a plea to my fellow wheelies. When
you meet ignorance, pause, count to ten and think before responding. I know
it’s tempting to respond like for like. To meet ignorance with ignorance. It
can feel good to have a great cutting remark in response to an idiotic remark.
But; if we are to change the hearts and minds of those around us, it can only
be done through insight and knowledge. Communication is the key. People gain
knowledge and understanding partly through hearing, partly through seeing and
partly through experience. Do your part to help them understand.
If you are not disabled or limited and reading this then my
plea to you is stop and look, listen, think. Try to put yourself in a wheelchair,
buggy, hospital bed. How would you feel, day after day, limited, and
frustrated. How would you feel when your moves and choices are so closely
monitored and others feel the right to judge you and test you at every turn. Don’t
jump to conclusions.
Communication and understanding will change things. Let’s
not give in to hate or anger. Let’s take hold of our sensibility (emotional
response) and use our sense to make an informed response to what happens around
us. That applies to both disabled and able bodied alike.
Is quality a thing of the past? That seems a stupid
question, after all everywhere you look things are advertised as luxury, professional
or pro for short. Advertising tells us that things are built better, stronger,
more durable… yeah right, we all believe that don’t we? In fact we have become
the quality control department for most products. Instead of manufacturers checking
them, they are sent as is and fail in our home. We then send them back or bin
them. Built in obsolescence. Never mind the lack of quality feel the short product
I have an NHS power wheelchair it’s a Quickie Salsa M2 and I
am really grateful to have such an amazing tilt and tip wheelchair supplied. It’s
transforms my life. But I cannot ignore that it seems to be very poorly made. I
have had it for a year and well within that year the frame started to move
alarmingly, what I mean by that is it’s become loose and rickety. Add to that
the paint peeled so badly that rust was the main colour visible on the frame. I
wonder if the NHS commissioners request poorly built? Obviously not, and when
you consider that this chair is available privately and cost about £7000 for the setup I have, I do wonder at the
excuse Quickie would have for what appears to be poor quality manufacture. I
know the NHS get them for more nearer £4000 so do you think Quickie USA have
two production lines? One that only applies one coat of poor quality paint and
uses low quality parts that go to the NHS and a better line for private? I am
of course joking, well half joking, they will make only one version. I can’t
see how the NHS who are paying companies like Quickie millions of pounds can
get such seemingly poor products from them. What is happening with the people
who select these companies? Do they check on quality? Don’t tell me they are NHS
products I told you these same chairs are available privately. They are merely
bought by the NHS.
Don’t give me the argument about it being better if a
private company is involved either, because I got my wheelchair through a
private Company used by the NHS, Milbrook. So if private companies are really
the way forward to drive up quality through competition and quality control I
would be saying how wonderfully built my chair was. No, in reality all that
privatisation does is add a profit layer into the mix. So that someone has to
make profit out of the transaction. Ergo the end product has to be of a lesser
quality because the amount of money being spent is the same, the product needed
is the same, but someone in the middle is making a profit. Corners are
My first wheelchair was from a non privatised NHS wheelchair
services. It was a custom built push wheelchair. It was really well made and
lasted for years with no paint flaking off and nothing getting loose. Draw your
own conclusions as to why the quality has dropped. Defend privatisation if that
is your belief structure. I see no actual evidence it benefits us as users.
My guess is that my current chair will fail in a year or two
and need to be replaced. The cost of that to the NHS and in hassle and time to
me will demonstrate the folly of trying to cut corners on quality. Build a
better chair in the first place, one that lasts and you repair it less and
replace it less often. Car manufacturer’s learnt that years ago. They used to
put very few layers of paint on. Cars rusted almost as soon as they left the
showroom. Now cars are sold which boast of 7 and 10 year rust free warranties.
Car parts used to fail within months, now they last much longer. The car
manufacturers want people to keep buying new cars, but they do that by making
new cars attractive and second hand cars hold value for re sale. Wheelchair
manufacturer’s seem to have a very short term vision, sell their chairs to the
NHS or desperate people who need them. Longevity of the chairs does not seem a
factor, that is how it appears to me. Prove me wrong manufactures, show me how
well you build your chairs.
That will not change until wheelchair users make a hue and
cry and the NHS start to complain that they are not happy with the high failure
rates. CCG’s (clinical commissioning groups) do you even track the failure
rates of wheelchairs?
My fellow wheelies (wheelchair users for those who don’t
know) take note of this. If you are an employee of the NHS and have any say in
this process take note of this. If you are reading this in another country and
have similar issues, take note. It takes a massive backlash to companies before
they sit up and take notice.
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In ‘Star Trek Beyond’, The Star Ship Enterprise is attacked
by thousands of tiny ships. It is destroyed because there are just too many to
fight. In Star Wars ‘The Empire Strikes Back.’ The strategy of the Rebel Alliance is for tiny
ships to get past the major defences of the Death Star and attack it from
within. In WWII one of the most effective weapons against the German forces were
the many myriad of resistance fighters on the ground in occupied territories.
They cut off supply lines, disrupted communications and generally caused
confusion enabling a more effective attack by the main allied forces.
We are all familiar with the analogy
of illness and disease as a battle. We talk of fighting illness, beating
disease. Overcoming cancer. But not every illness can be fought and not all
battles are seen. Many of us are being attacked by unseen forces. We have
covert forces, fifth columnists, guerrillas, undercover operatives, spies
working against our systems. We have nothing to fight and nowhere to aim our
defences. It’s as if we are being attacked by small bands of resistance fighters
disrupting our systems, or a small band of fighters has undermined our main
defences and gone straight for the main operating mechanisms of our body. Or it’s
like we are being attacked on so many fronts at once by such small individual things
that our bodies are swamped and overwhelmed. Or perhaps all the damage has
already been done, by disease, accident or injury and it’s irreversible.
Without warning we might wake one
morning with a new weakness, increased pain and limitations. Instead of supply
lines being cut off by resistance fighters, we have nerve endings interfered
with or blood supply affected. Instead of star fighters undermining a large
ship our body is undermined, our muscles are weakened, and central nervous
system messed up. These things don’t respond to the usual fight response, in
fact for those of us who suffer from such hidden attacks, our immune systems
have been attacked first. So, a full-fledged response is just not possible.
Where the attack has already happened, we are left reeling, looking at the
We all love a good Hollywood
block buster, don’t we? That point in the story, like the ones I mentioned
above when the tables turn. When impossible odds are reversed, and the battle
goes from being lost to being won. I am studying screenplay writing through an
online course at the moment. It’s a short one that’s free online, supposed to
be 2 weeks, but has just a few hours work in it. One thing you pick up fast on
this course; we all know it already. Movie scripts are shaped into a pleasing
form. The protagonist (hero/heroine) wants something, there is an obstacle to
them getting it, they fight through and get it.
We know that in life many people
want or desperately need things and most times people die without ever getting
those things. I don’t mean to be negative, just realistic. I am not being defeatist
to say that there are certain illnesses that you cannot fight. That once damage
is done it’s often irreversible. There are times when giving up is OK; not just
OK but positively helpful. You will find rest and peace if you stop fighting a
lost cause. Stop banging your head against a brick wall. I have found that; I
stopped fighting this illness a year or so back. Since then I find I can cope
better, feel more peace and have more energy, mental and physical. Because I’m
not wasting it on fighting the unwinnable. I still can’t walk or stand, but I
am having fewer collapses and feeling brighter in between.
Not all battles are won by
fighting. Not all victories are by overcoming the enemy. Sometimes a victory is
in learning to live within your limits. Sometimes winning is to find a place of
peace and acceptance of your situation. If you are newly disabled or have been
for a long time but are fighting a losing battle against it. Listen to me on
this; is the battle you are fighting winnable? If not, try accepting where you
are and look for the good in it. Try to find a place of peace and calm amidst
the storms of pain and limitations. Search for the new meaning in your life. Remember,
if you have fought and fought and all you have achieved is exhaustion and
despair, maybe try acceptance. It isn’t giving up, it isn’t hopelessness.
Acceptance is finding the new
paradigm for your life. Accepting that change is painful, but not all bad. You
are not a loser if you stop fighting, you have won, because you have overcome
your disability by adapting to it. Sometimes if you cannot go through a wall,
you can go around it. If the wall of your illness is too high to climb, go
around it. You will find that the other side is not as horrible as you imagine.
There is hope and a future even in limitation. Stop fighting and search for
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There’s a comedy with John Cleese that has a great line in it. At a point in the story when the main character is almost ready to give up, he says, “it’s not the despair Laura, I can cope with the despair, it’s the hope.” By which he means, if he could just give up on trying to get to the headmasters’ conference in Norwich, the aim of his quest, then he could relax and let go. The despair he would then feel would be bearable because he would no longer be fighting. I understand that feeling very well.
Illness is often characterised as a fight, we talk about
fighting against cancer, fighting a disease, we even fight a cold. We
congratulate people who ‘overcome’ an illness. In cancer wards there is often a
bell to ring triumphantly at the end of treatment. We celebrate and see a
victory in overcoming illness. Now don’t misunderstand me, of course it is
brilliant when people get well, and we should celebrate that. There are definitely
illnesses that respond to being fought against. I also know that the mind plays
a big part in all illnesses, so positive attitudes help in getting well,
whatever is wrong with us. But there are also illnesses that do not respond to
fighting. There are illnesses actually made worse by fighting.
Have you ever seen or heard of a Chinese finger puzzle? It is a tube that goes over two fingers, one on each of two hands. You then try to pull your two fingers apart. The harder you pull, the tighter the tube grips them. This is because the tube is designed to compress onto your fingers as it pulls apart. The only way to remove it, is to stop pulling, stop fighting, to actually push back the other way and remove it. Another illustration would be sinking sand, struggling makes you sink deeper. There are things made worse by fighting and struggle, and that is true for several illnesses too, as I know from experience.
You can see that an illness like that makes you look like a
quitter. Because the only way you improve is by resting, stopping, what appears
to be giving up. The only way to improve at all is by not fighting it. It’s
counter intuitive and contrary to the way of the world. We are brought up,
especially as men in my era to be fighters. We are told to try hard, push
forward, try and overcome. When we have a cold, everyone’s attitude is to ‘suck
it up’ and carry on. So why not be like that with all illnesses.
Here’s the thing, I am, and I was a fighter. I was first ill
in 1990 and I carried on working, fighting, ignoring the illness. It’s both the
advice I was given and the type of personality type I am. The effect on me was
to make me worse and worse. I was physically strong, oh yes and often stupid. In
the 1980’s I loaded a moving van with all our family’s possessions single
handed, upright piano and all! There was no tail lift on the 7.5 tonne van, the
only thing I could not load on my own was the washing machine. I had to get
help. With the piano I put one end on the van and lifted the other up and slid
it along. The washing machine was a dead weight and the van too high above me.
I used to move car engines around without hoists. Yes, I was young and stupid.
I am not showing off, I am saying I pushed myself beyond. When I had pleurisy
in one lung, I drove, in agony, from South Wales to Scunthorpe on Christmas Eve
so the family didn’t miss out on Christmas celebrations. Yes, I was in hospital
that night, but I made the drive, in agony. Illness does not easily stop me. I
am not a quitter.
Yet illness felled me. I could push no more. There are limits
to human strength. I am not superhuman. I get so frustrated when people say I
should pull my socks up or look at things differently or that illness can be
overcome by positive attitude. These are such stupid comments. Not every
illness can be overcome by attitude or strength. If positive thinking could
make any difference, then I would never have been ill. If strength would help,
I would not be ill. There are some things that just cannot be overcome by positive
mental attitude or by fighting it. There comes a time when giving up really is
the best and only option. Then at last you find rest and peace. Then at last
healing can begin. I come back to my opening quote “It’s not the despair, I can
cope with the despair, it’s the hope.”
Once you realise that all the fighting in the world is only
making the illness worse, then coming to terms with it and learning to accept
it really is the best way. Yes, you have to go through the despair of realising,
‘this is it.’ You may initially rail at the frustration of your limitations,
but in the end, you can come to a place of peace and actually start to feel
better. I have found that once I got through that period of angst and kicking
against the limitations, I could make the most of my circumstances. Once I
stopped wasting the little energy I had on anxiety and frustration, I could use
it to enjoy the day.
If you have a similar illness that is not improved by
fighting against, then learn from this. Stop fighting, accept your limitations
and find the good things within your limitations. Obviously, this doesn’t apply
to illnesses that you can fight against, but only the ones you can’t.
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These are a list of ten things I have found make life easier when
you are mobility limited:
1/ Litter picker/grab sticks. I can’t over state how useful I find these. Do look for ones that have a decent grip. They are still limited by two things, your strength and the weight of what you can pick up. But they are great to get smaller things that are out of your reach. However much it may sound fun, its no fun having to keep asking people to fetch everything for you. If you can grab what is just out of reach, that is really great. I have a piece of string on the top of mine so it can hook onto another thing I have lots of, hooks.
2/ Hooks, I have a number of Velcro strapped hooks around my bed and on the wheelchair. As mentioned in the 1st point, a litter picker is on one. I have my Trabasac wheelchair tray/bag on another. You will find them very useful.
3/ Panniers, I have several of these, all different types. Two on my bed, two on the wheelchair, one on my reclining chair and one on my bedside trolley. They hold medicine, remotes, snacks, papers, magazines, pens etc.
4/ Sleep headphones, these are a soft headband with built in
headphones. I can lie down and listen to music or my iPad films. You can get
wireless ones, but I gather they last a few hours per charge.
5/ Multi charger unit, this is most useful in nursing homes, but
also good at home. As I have a lot of technology it enables me to charge many USB
and Apple devices at the same time, from one 3 pin UK plug.
6/ iPad stand, I have a heavy based, goose necked stand and it is
so useful. I can easily view or operate my iPad without having to hold it or
balance it on my knee.
7/ Non slip tape on my wheelchair footplates, I had non slip tape
added to my footplates because I found that as I was being driven along my feet
would slip forward and sometimes off the footplates. The tape keeps them in
place. It’s especially needed for the times I have the enclosed bottom leggings
on, as that has a smooth base. This may be specific to me, but you will know if
your feet slip around.
8/ Water bottle holders, I have had to try several of these to
find the one that works on my wheelchair as every chair is different. My one
has to grip onto the side cover by the seat as there are no available bars. I
also have one on my bedside trolley.
9/ Clip on hand sanitiser, I have one of the types of hand
sanitisers used by health professionals in their uniforms. It came with a clip
and a spring retracting wire. I attach the clip to my wheelchair side pannier
and then can’t lose the bottle. It’s very useful to have out and about.
10/ A bottle of Neutrodol by the bed with a temporary cover. It
can be uncovered as needed. When your bedroom is also your toilet, its good to
be able to keep it fresher smelling.
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The question on everyone’s lips is what bedpans and urine bottles
do you buy? I’m sorry, but it would be top of your list if you were unable to
go to the bathroom. But seriously these things are important to those of us
limited with mobility and those who are Carers, paid and unpaid.
I’m a man, I feel like I should add, “ooh Betty I’m a man.” As I
did love “Some mothers do ‘ave em.” So, I am limited in my knowledge of female
toileting needs, I am married though. So, I will try and cover both.
Let me start by saying I have a soft bottom. No, I’m not boasting,
it’s a fact that results from spending a lot of time in bed. Therefore, bed pan
shape and design are important. Let me take a step back here, if you’re reading
this eating your breakfast, you are probably thinking, ‘what am I reading?’ If
you are walking along reading on your phone; watch out for that lamp post! If
you are reading this at work, what are you doing? Get back to work!
Design; just imagine if your job was designing bed pans. It’s a very valuable job, but not one you are likely to shout about. I digress, as usual. A good design of bedpan has a wide smooth seat with rounded edges, think about a conventional toilet seat. Then think about depth, maybe not something you want to think too deeply about, no pun intended. But you are going to be filling this bedpan and a certain depth is needed for clearance purposes, if you see what I mean. “You feel me?” Is a ‘street’ expression that may be appropriate here. Another consideration is for your poor Carers, how easy is it to clean out. One practical idea is to put a temporary paper lining in before use. Much easier to dispose of. One problem that will decide on the depth of pan you buy is your degree of mobility. The shallower the pan, the easier to roll onto it. At least bedpans are unisex, now onto urine bottles, oh joy.
‘Ten green bottles, hanging on the wall.’ You won’t need ten and
they hopefully won’t be green, but a urine bottle hanger is a great idea. I
found chromium plated ones on Amazon very reasonably priced for a set of two.
The bottles themselves take some consideration. Will you only use them in bed, or out and about? If only in bed, then it’s less important that they are totally leak proof when sealed. If out and about, you don’t want them to leak. Also note the cheapest ones have sharp edges around the opening. They can cause nasty scratches, ouch, I know from experience. Most urine bottles these days come with an add on female adaptor. It push-fits in the end, like a shaped funnel. Or you can buy a female only urine bottle. Another consideration might be colour, do you want a see-through bottle? Or would you rather be more discreet if you have visitors or are out and about, you know bright red. Personally if you are a man and out in a wheelchair I recommend Conveens (See my blog ‘Not so public convenience’) If at home a urine bottle hanger enables you to hang the bottle on the side of your bed away from visitors.
I found that trial and error was necessary to get what worked for
me. Having stayed in several Nursing homes I also got to try several styles of
May your experiences be good ones. It’s a difficult and
embarrassing subject. I hope my attempts to lighten it have helped rather than
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I will be looking at items I have found helpful with my limited mobility. Where I have tried several versions I will explain why I use the one I do. If I tried one and it worked I will tell you why.
Trabasac lap trays.
One thing I use the most is my Trabasac lap tray. I have owned a total of 3 of these. Two of the Trabasac Curves, one wore out as I used it for 6 years. Then recently I changed to a Trabasac Mini.
First to look at the Trabasac range as a whole.
This lap tray come rucksack is a unique design I have found nowhere else. If I did I would buy it, as they are expensive for what they are. The idea is a combination of a rucksack (not a roomy or multi pocket one) and a lap tray that can attach to a wheelchair or car seat via quick release straps. They include straps to use as shoulder straps.
However, they have too wide a design idea. They can be used as laptop rucksacks for business travellers (especially Reviews
I will be looking at items I have found helpful with my limited mobility. Where I have tried several versions I will explain why I use the one I do. If I tried one and it worked I will tell you why.
Trabasac lap trays.
One thing I use the most is my Trabasac lap tray. I have owned a total of 3 of these. Two of the Trabasac Curves, one wore out as I used it for 6 years. Then recently I changed to a Trabasac Mini.
First to look at the Trabasac range as a whole.
This lap tray come rucksack is a unique design I have found nowhere else. If I did I would buy it, as they are expensive for what they are. The idea is a combination of a rucksack (not a roomy or multi pocket one) and a lap tray that can attach to a wheelchair or car seat via quick release straps. They include straps to use as shoulder straps.
However, they have too wide a design idea. They can be used as laptop rucksacks for business travellers (especially the larger one that I don’t own), wheelchair trays that double as secure bags or play tables for children in cars (they do a coloured trim version for kids and a rather cheap and tacky waterproof cover. The ‘connect’ versions just have a velcro surface to stick things to, such as their so called media holder. This is just a velcro sausage that you shape to hold things.
The features I like and reason I have bought 3 over the years are:
1/ they have a storage area inside, like a bag, I keep my phone and wallet in it.
Storage inside my Trabasac Mini, it can also fit an iPad
2/ they have quick release straps that are in two parts, one connects to the tray and the other to your wheelchair or car seat. Then they have a quick connect to latch in place.
Range of straps that come with it. Note quick connect for tray end and in middle.
3/ they have a beanbag underneath for your lap and a slight ridge around the top work surface (the surface itself is getting poorer quality over the years)
Ridge round worktop
I find the Trabasac Mini big enough for an iPad 9.7”, plus a phone, wallet and some small bits and bobs. The Curve although bigger never fitted more into it, but always felt more bulky.
I find I can eat my lunch off the top of the tray, although a very large plate is a squeeze. I do find that it is not level enough on my lap to trust an open drink. But I tend to have water bottles in a side holder. These I will review later. I should note that the angle of the tray will depend on your seating position.
A plate on a Trabasac Curve
On the whole I would really recommend Trabasac lap trays. I get nothing from them for saying that. Whenever I have been places with other wheelchair users and they have seen my tray, many have asked where I got it. Maybe I should be on commission.
I buy mine from Amazon purely because of the ease of return if things go wrong. In case you don’t know, even after the 30 day easy return window closes on Amazon you just go into help, chose contact and either phone or email about your order.
I will be continuing to review other items in the coming days.
Lying on the bed in an anti-room of the neurosciences ward, I’d felt some trepidation. Electricity and I have never been great friends. You might say we were no longer on speaking terms, ever since 1989 when 415 volts 13 amps of electricity tried to kill me. OK, maybe it was my foolish oversight, but being electrocuted and burnt by a washing machines mains capacitor was quite enough to put me off electricity for life (See my blog “Ambulance Transport” for the details). I had therefore not been very happy when in 2007 a neurologist referred me for a nerve conduction study, and I discovered it involved running electric currents along my arms and fingers until they jumped. Yes, it hurt, not really badly, but it was the reminder of the previous electrocution that was the worst part.
Now 12 years later and in a declining health condition my
current neurologist wants to rerun those tests to see what has changed. I’ll
tell him what’s changed, I now know what’s coming and I worried all the night
So, lying on the bed awaiting the test I was practising meditation. I’m hoping practice makes perfect and that at some point it will work. Actually, I can relax quite well when I set my mind to it and that’s what I did.
I am going to back track at this point, as the process of
getting to hospital in a limited state has its points of interest. If you think
preparing to go to a hospital appointment is complicated generally, try it when
you have limited mobility.
First, I must call the hospital and ask what tests will be done.
If they need to test me lying down or sitting up, then if it’s lying down, as
this was, do they have a bed available? If they have a bed, do they have a
hoist to transfer me from my wheelchair into the bed? If they have no hoist I
will have to arrive on a stretcher and a banana board is used to transfer me.
Then I need to book an ambulance with stretcher transport. Which takes a while because
they ask a lot of questions about why you need it. I then make sure there is a
bed available on the ward and tell them I’m arriving by hospital transport. Next,
I must change my carers timing. Because the appointment time would clash due to
allowing enough time for being ready early. When you get hospital transport you
have to be ready two hours before appointment time, that’s if the appointment
is nearby. When I was going up to Liverpool, I had to check a leaving time, as
it took 4 hours to get there. Before I was on the latest medication, I didn’t
have the concentration to do any of this, so Mary sorted everything. Even with
the new tablets, which help my focus, I still get absolutely wiped by this
process and it is the only thing I do in a day, organise the trip to an
appointment. This all happens weeks before the actual appointment.
Back to the day of the appointment. While we were waiting Mary took a phone call, checking parking and confirming the time of arrival. Always very helpful for me as I get anxious if I am waiting for an unknown time. My appointment was at 12pm and the two ambulance crew members, a lovely couple of ladies, arrived a bit before 11.30am. Those who follow my blog will know that our house is not big and so a stretcher, which I needed as the test involved lying down, is difficult to get into the house. The crew got it through to my bed with a bit of jigging, the bed, not them. Then started to get the stretcher prepared ready for me to transfer onto it. One of the ladies recognised me from my blog, I am famous at last. Holding back on signing autographs, that for some reason she didn’t ask for, I hoisted up from my bed onto the stretcher. I was swaddled onto the stretcher with straps and a blanket. This is done so that if I have a collapse on route, I don’t end up with my arms hanging. I also had on the neck cushion that keeps my head from lolling. Fortunately, I am very light, which makes it a puzzle as to why the crew heaved so much on slopes and corners. I know the BMI says 14 stone is obese for me, but that’s crazy. After much tricky negotiation the two ladies got me through the tight doorways, round the sharp angles, up the inner ramp and down our bumpy alley. Then onto the High Street where the ambulance awaited.
If you have never been wheeled out into the High Street on a
stretcher, let me just say, you have never lived. I used to think the most
embarrassing thing would be using a wheelchair, until the first time I was
wheeled on a stretcher in Wellington High Street. There is something about
being in bed, that feels like it should be inside. I don’t know why that is, lying
down, in a blanket just feels like an inside sort of thing. Obviously when you
have a major accident or emergency you are wheeled on a stretcher publicly; in
that situation you may not be very aware of what’s happening. But remember I
was being transported that way because I needed to be tested on a bed. So, I
was awake and aware, oh yes, and embarrassed. Red has always suited me though.
We arrived at Musgrove after a very smooth trip, the ambulance crew parked around the back so that we were on the correct level and didn’t have to go up in a lift. The first thing that hit us all as we entered Musgrove was the smell of lunch, they were obviously having smoked fish. I say obviously, but it could have been any fish from fish fingers to smoked.
There is something very nice about arriving on hospital
transport. It makes up for a lot of the inconveniences. Because the ward has
advanced notice of your arrival, you often go straight into the side room that
you will be seen in. That happened this time. I still had to wait for the
doctor. Next came the transfer from stretcher to hospital bed. At home I used
my hoist to transfer onto the stretcher, here I had to be slid on a banana
board. I had on my day sling, which is a polyester sling that covers all my
torso. This has straps which they could hold onto and pull. There were three
people in the room, two ambulance crew and a nurse. Here I had confirmation I
am not obese, they called just one more member of staff. A year ago, when I was
transferred into the MRI machine, they called a total of 8 people! I must be
half the size, mind you I have lost weight. The 4 of them transferred me easily.
This involves lining the two beds up close and same height, slipping a board
under me, pull across and take board away, simples, for me anyway.
I didn’t have long to wait for the doctor. She asked me some
medical history questions and then started the test. She attached electrical
contacts to parts of my body starting with my feet and asked me to say when I
could feel a pulse, while recording the results on a computer. After I felt the
first pulse several more followed. She repeated this at different points on my
feet, lower and upper legs, arms and neck. At some points she warned me that I
would feel a whole series of pulses in quick succession, at others that my arm
or leg would jump, they did. If you have ever used a TENS machine or one of
those electrical stimulation exercise machines, that’s what it feels like. I
would not describe it as painful, as such. The pain for me came from two
things, anticipation and memory. The other thing I noticed was that it was less
painful than the test I had 12 years ago and that this time it included my
legs, which previously it hadn’t. In that test 12 years ago, the doctor had
spent a long time on my hands and arms. Testing each finger many times. This
test was over more of my body, but less detailed per part. I suppose that’s because
this is updating how things have progressed, at that point 12 years ago, I
could still walk, a little, I could also stand.
The next part was an electromyogram, this was very specific in my case, looking for a rare but unlikely neurological condition. So, I only had the needle inserted in my head, above one eye. I think if you had the test, it more likely to be in other muscles. This part did hurt at times as the doctor kept moving the needle around as part of her test, it also took a long time. I was well ready for it to be over. While the test was ongoing, I could hear a continuous sound like rain on a metal roof. Every so often she said to the nurse “Now.” Obviously, a button was pressed, the sound stopped for a second then re-started.
It’s always frustrating after these kinds of tests that you
don’t get immediate results. They write to your consultant, who contacts you. When
it was over, we only had about 20 minutes before the same ambulance crew
returned to collect us. But just before they arrived, I had a collapse which
lasted part of the journey. So the only way I knew where I was in the journey
out of the hospital was a combination of Mary telling me and the smell of fish
near the exit.
In Wellington we had the High Street parade to look forward
to. A repeat trip along the High Street, maybe I should wave, no wait I can’t,
my arms are strapped to my chest. Then back up our alleyway and home. The end
of an exhausting trip out.
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