Six Degrees of freedom

How free are you? I have spoken before about VR (virtual reality) one of the concepts in VR is 6 degrees of freedom (6DoF is the abbreviation) it refers to the controls used to operate your movement within the virtual world: up and down, side to side, forward and backward, a total of six; hence six degrees of freedom. Are you all asleep yet? Well wake up!

I was thinking about this the other day. What I love about VR is that freedom of movement which I lack in the real world. I can zip forward and back, side to side and even up and down many feet; that’s something beyond most people’s jumping ability. What is missing in these six degrees of freedom is the ability to teleport. Any fans of Star Trek, I know that’s everyone, will have always wanted to teleport. To be able to press a button and transport from one place to another in an instant; the stuff of sci-fi and fantasy. Well in the VR world you can do just that. There is an App called Wander which is basically Google Earth on steroids, in it you can just appear anywhere on Earth in an instant. It’s like beaming in from outer space. Then you can even time travel; if Google Earth covered the place you visit at different times. You can view it at that time.

In the VR world you have a home. Not very earth shattering I know. Most people have a home anyway. But the VR home is massive. My home is far too small for my wheelchair, I am always bashing into things, scratching doors etc. Apart from the fact that I am not in a wheelchair in the VR world, the house itself is gigantic. Not that it is a problem getting around it; you just teleport from place to place. No wheeling or walking needed.

An aside; when you play some games in VR, Star Trek for instance, you become a character in that game. You look down at yourself in the game and see who you are. In the loading part of the Star Trek game, as the shuttle is flying towards the main ship, you look down and find you are wearing a short skirt. But that’s OK because you are a woman, what am I saying! It is very strange in VR sometimes. Anyway, back home before we all need therapy. In your virtual home you can choose what it looks like and where it is; space, another planet, the past, a mountaintop hideaway (if you’ve always wanted to be a Bond villain) etc. You can even decorate it. Although that’s where the 6DoF gets a bit tricky. One of the features of 6DoF controllers is that they enable you to have virtual hands in the VR world. I think that practice must make perfect, because I have yet to master picking things up and moving them around. I can do it with my real hands; just.

I started by asking how free are you? That was a question that has a serious answer, even though I have gone off on silly asides. Freedom can be the physical limitations of our bodies, the limitations of our finances, our mental wellbeing, the social situation we are in and even the very buildings and infrastructure around us (something very much in the news with the push for more accessible housing).

Freedom is not a simple concept. We perhaps think of it in relation to our gender, social background, disability, race, finances and surroundings. But we forget that it is also a state of mind. Do not misunderstand me, I agree that the main limitations are very much social background, race, disability and gender. Although each of these will cause debate as to there degree of limitation or even if they should be included and some might want to include other things.

What I am saying is that on top of these limitations, our attitude and outlook affect our perception of freedom. You could have every advantage going and yet not be free if you have a closed in viewpoint. There have been those in history who have been imprisoned, oppressed and persecuted and yet they have found inner freedom.

I do not advocate that there should be no change to society to make things better for the oppressed and marginalised. Anyone who reads my blogs will know I champion change. What I am suggesting is that while we await that change, we can still find a degree of freedom with our limitations; maybe not six degrees of freedom, but some relief and freedom. Change can be slow, but we need not spend that time focussed only on how limited we are, we can look to a wider vista and see freedom within our limitations whatever they are for you.

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In anothers shoes

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.

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All Dressed Up With Nowhere To Go

On Thursday 12th Nov I was sitting in my bedroom watching my PC screen avidly. My top half was smartly dressed. The webcam could only see my top half, for all my fellow Zoom participants knew I could have forgotten my trousers; I hadn’t.

It could all have been so different if it wasn’t for this pesky virus. The Zoom meeting, I was attending; do you attend a Zoom meeting or just watch it? Anyway, the Zoom meeting was replacing a very auspicious affair at The Palace of Westminster. Habinteg’s 50th birthday celebration. Obviously they couldn’t celebrate their birthday without my presence. Well actually for anyone who has read my previous blogs you will know that I was there because I was a finalist of the 2020 essay writing competition. I could have been at a very swanky meeting, instead I was sitting in my bedroom. Still, it saved me having to excuse what I was wearing. Do you think they would have let me in wearing a T shirt? Or my PJ’s?

There I was sitting, as I may have already mentioned, expectant, almost with bated breath. I had a while to wait till the winner of the competition was announced. There were speeches by staff of Habinteg, honorary guests, a comedian and even a group of lockdown angels. Then came the moment we had all been waiting for; I like to think the main focus of the event. Who had won the essay writing contest? It was introduced by Lord Borwick of Hawshead, neither had I. He rather gave the game away about whether I had won, being one of the judging panel he had obviously discussed at length the winner and runners up. So, when he listed the seven finalists and came to my name, he said Mike umm…. Nevin; I knew then I had not won. Then Baroness Thomas of Winchester, had the job of opening the envelope. I was no longer on the edge of my wheelchair seat; just as well because I could have fallen out. Three architects won first prize and runners up. I think I may have been the only non-architect in the finals.

There goes the money I thought and the fame and fortune. Actually, I was disappointed, but not surprised when I realised that I was up against architects. What hope had I? I wrote about the socio-political big picture view of accessible housing; oooo, listen at me. They wrote about and even did drawings of practical detail ideas. If that was the requirement, I had no chance. It’s as if we were entering two different contests. I know who I would have chosen to win; just saying.

After the event was over, sitting in my wheelchair in my bedroom, Mary at my side I was contemplative. We live in a very inaccessible house. The bedroom where I was sitting is so small, I can barely rotate my wheelchair. The doorways scrape the wheelchair sides. Only one room in our house can have a ceiling hoist, not the two rooms that really need them. The way outside from my bedroom involves navigating a tight door then a very complex route down a ramp that is at an angle, then through another tight door, 90 degrees left, though another tight door and out the front door via a portable metal ramp (Mary puts down) to a concrete ramp. Then down a very uneven alleyway that floods when it rains.

Accessible housing, the subject of the essay, is very close to my heart. I live with lack of easy access every day. It makes my life harder than it needs be. It wears me down. It affects the quality of my life and the freedom I have or rather don’t have. But I do not just moan, anyone who reads my blogs will know that. I am a positive and upbeat person. Anyone who meets me comments on my smile and how positive and well I look. I don’t believe in being miserable. It is hard to be happy, because happiness is related to what ‘happens’ to you, hence happiness. But I can be at peace even joyous. I can be upbeat and full of fun. I have a good sense of humour and I’m quirky. So, I hope and pray for an accessible house to be available for us soon. We do look and try to find one. They are just not very readily available.

Back to where I began, all dressed up; well, half anyway. But nowhere to go. No Palace of Westminster, no winners podium, no accessible house… yet, and nothing to do but contemplate the event.

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Care For All

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.

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Habinteg Essay

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.

Essay Question

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.

Essay Answer

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.

The original essay had full source references.

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