Don’t Let Me Die In Phoenix Article 9: ‘It Doesn’t’ Have To Be ‘Right’ To be Called Love’

In today’s post, John Davis explores ideas of resilience, trauma and resistance/power in ways that critique individualised and overly medicalised notions of trauma.  This critique utilises notions of strength-based working and the affirmative model of disability to explain that we should never assume that a specific life experience, situation or impairment only has negative consequences.  It argues that the world looks a lot better, and we can make more sense of our lives, loves and aspirations, when we come to terms with our bodies and learn to work with, celebrate, be creative with and value our impairments.

butterfly scots

The previous article concluded that it is important for us to establish our own sense of self if we are to bridge to others.  We have to rise above our own insecurities if we are to develop and demonstrate empathy for others. The article indicated that most of the staff in the USA employed my sense of Scottishness to bolster my self-esteem and to encourage me to rise above what I was going through.  The previous article indicated that some staff were better than others at treating me as a human being but that the majority of staff were excellent at their jobs.  Today’s article connects my sense of self with an inner creative and protective ‘songbird’ in order to critique the simplistic suggestions that, when we experience catastrophic events, there is something wrong or false about creating self-protective places in our identities.

In the hospital my impairments were so severe that the staff were constantly monitoring my right to freedom and independence.  The play Purposeless Movements has a moment in it were the actors chide Scottish folk for fearing independence.  The play also chastises folk for fearing impairments.  My experience of the staff in America was that they enabled me to avoid fearing my independence and/or my impairments.  They supported me to develop my independence over the course of my stay.  I will always appreciate how quickly the staff enabled me to understand how to work with my impairments and supported my ability to be more like myself again.

This is a good lesson for the current crisis.  Staying safe requires adjustments and as we gradually move out in the world again we need to, collectively, stick to the guidelines and understand that there will be no quick move back to full contact social gatherings.  The longer term changes to our life styles may be frustrating, but we have to come to terms with this change and make the best of a bad hand.

That’s what I had to do last year during all the chaos. I had to find a place in me that I could be content with.  As a contrast to the chaos, I tried to take so much pleasure in the smallest things; like a kind gesture from a member of staff, a hospital food item that was new to the menu or a message from a friend.  As I have mentioned previously, I have always valued the simple things in life.  However, last year’s life changing experience has accentuated that approach to life and I have tried to carry that feeling forward.

In my early thirties I experienced pneumonia having developed a nasty chest infection from constantly working late in a damp and cold office, where the heating was automatically switched off in the evening. The pneumonia floored me (it was a couple of months before I was able to walk any distance).  I now realise that this event had a longer term impact.  After the episode of pneumonia, I completely reduced the time I spent doing sporting activities and as my health improved I spent the extra time on work activities.  Writing this blog has enabled me to understand that I learnt very little from that earlier episode of pneumonia.  Last year’s nightmare experience came about because 20 years of over working had further weakened my immune system.

The Corona virus crisis has caused me some concerns about how recovered my body is to deal with the virus should I get it.  As a precaution, I stopped going out into public 2 weeks before the lock down occurred and have self-isolated since then.  It was a bit ironic that 12 months after my isolation in hospital – I was back isolated again.  The loneliness of the crisis is starting to wear on me and my male side is about ready to say, ‘fuckit – I’ll take the risk’.

But, in reality what would the point have been of all the previous weeks sacrifice, if I suddenly broke the guidance and let my reckless male side be given free reign by for example, going to hug a relative on their birthday?  The new Scottish guidance suggests that we can go to a family or friends garden and chat to them as long as we stay 6 feet apart.

When meeting friends and family outdoors

You can use outdoor spaces or gardens for recreational purposes, for example to sit, relax or have a picnic or barbecue – alone or with members of your household and/or members of one other household at a time.

As above, if people from two households are meeting, you should meet in small numbers – no more than 8 people in total at a time.

You should not meet people from more than 1 other household each day.

Meeting outdoors with members of more than 1 other household at a time is not permitted.

Meeting members of another household indoors, without a reasonable excuse (such as providing assistance to a person at risk), is also not permitted.

Take an alcohol based hand rub (hand sanitiser) with you and use it often, especially before eating or after touching surfaces.

If you eat outdoors you should be particularly careful about hand hygiene. If you are eating with members of another household, each household should bring, prepare and eat their own food separately,  you should avoid sharing utensils, dishes or plates between households and ensure that you maintain physical distancing between households.

You should not go inside someone else’s house and you should avoid using shared facilities such as bathrooms, as the risk of transmitting the virus is greater indoors, and the virus could be transmitted by or to you when you touch surfaces. You should consider this and use your judgement when deciding whether to travel longer distances, or undertake journeys that will take a long time, to meet another household.

If you must go through a house to access a garden, do that quickly and without touching surfaces.

Let’s be very clear on this (as a number of family members who have contacted me seemed to have missed the point), YOU CAN ONLY VISIT ONE OTHER HOUSEHOLD ONCE A DAY.

By now and like myself last year, you will all be suffering from a deprivation of hugs.  But, we need to ensure there is not a further increase in cases and this virus is spread by physical contact.  The need for human warmth and kindness in our darkest hours may be overwhelming but, if we are to reduce the infection rate right down, we have to maintain our dignity and stick to the guidance.

Last year, the drugs I had to take tended to mask my feelings about what was happening to me.  At times, I did experience feelings of frustration but, generally, I had a calm feeling because there was nothing I could do about what had happened.

Americanna/Ameripolitan music helped me to find a dignified place in myself where the calmness could prevail over the frustrations.  And, I was able to tap into my own inner songbird as a safe place to hide from the reality of the catastrophic events.  Eilen Jewel song, Songbird helps to covey the feeling of this process of taking ‘the sad out of the blue’:

Oh songbird in my darkest night

You sing so sweetly I can’t be afraid

Over my path your song casts a light

So bright, so real I won’t lose my way

I set true north by you

And so all directions too

Songbird what did I do before you

What did I do before you

Oh songbird in my weariest day

A few clear notes is all I need

And I see without warning a precious ray

Of magic in each ordinary thing

You illuminate, renew

Take the sad out of the blue

Songbird what would I do without you

What would I do without you

How’d you get so strong, such a little thing

Is it your song that makes you brave

My whole world rests on those tiny wings

But you don’t seem to mind the weight

I set true north by you

And so all directions too

Songbird what did I do before you

What did I do before you

You illuminate, renew

Take the sad out of the blue

Songbird what would I do without you

What would I do without you


Eilen Jewell’s song encapsulates what the nightingale does for me.  When I first heard the song I had thought Eilen Jewell was singing about the inner self, her own singing ability, that got her through life.  Or, that she had written it about a friend or lover who had supported her through her worst moments in life and who was a musician:

Eilen Jewel’s partner is a drummer but it turns out she wrote the song for her daughter Mavis.  Such love in a family is a wonderful thing.  John Bradshaw book The Family discusses the ups and down of family life.  Bradshaw’s ‘evangelical’ work dealt with the negative aspects of family abuse and conflict.  He argued that if children and adults experienced a lot of shame with in their family life they develop a false self to protect themselves.  Whilst this may be the case, my and my colleagues work in the field of family support has sought to move away from approaches that blame families for our identities.

Bradshaw also argues, a social model type way, that we can use the family to understand wider issues about our society.  But, some professionals selectively use his work to blame all society’s ill on ‘the parents’ rather than being aware of the overall picture (poverty, poor housing and zero hours contracts) that places pressures on families.  Indeed, some family support professionals are part of the problem, not the solution, to children’s issues because they tell, rather than, ask children and families what they need. Whilst we need to avoid being overly judgmental of families at this time of the Corona Virus, we also have to be aware that the pressure placed on families will mean that there are increased conflict and domestic abusive.  If you are aware of anyone who is currently living in fear or you your-self need help please follow the link to the Domestic Abuse and Arranged Marriage help line Scotland

In my early childhood my own parents often found it difficult to make ends meet and constantly argued about their life pressures.  Whilst I accept that my creative side may have been forged as a defence mechanism.  I see my inner songbird as a very positive thing, not as something to be kept secret, nor, to be thought of as a ‘false’ self.

The songbird strategy I employed to get through my hospitalisation came from my childhood and teenage years.  In childhood, I constantly had to ward off an extremely difficult family contexts, which at times made you feel worthless.  In childhood, I learned to look for the beauty in the carnage.  The butterfly amongst the weeds.  I learned to be a nightingale, who in the darkness sang to cheer his own solitude with what he hoped were sweet sounds of a beautiful kind.

At that time, John Peel was our saviour and I couldn’t wait to listen to his show on the radio which included songs from the Clash, Stiff little Fingers, Angelic Upstarts, The Stranglers, The Buzzcocks etc.  In particular the song Teenage Kicks from The Undertones sums up the escapist nature of the period:

Whilst I was in hospital I was unable to hold anyone tight and this had a bearing on my relationships with my wife.  As things progressed, my wife and I had to find a way forward that did not blame each other for the fact that, in the hospital, we were unable to communicate with each other on any type of meaningful level.

In the hospital, the way forward was very unclear, but we were experienced enough to know that we needed to begin by valuing the best in each other and not judging each other, as the previous article mentioned, on our worst moment of our worst day.

I try to look for people’s abilities and build a relationship from there.   I try to love the best in people and see where we can connect to work together to make the world a better place.  I have sometimes been teased by my friends for looking for the best in people.  Particularly when we have been travelling with work in the USA.

My non-American friends have the idea that the individualistic nature of life in the USA means that most people who come across as friendly are, actually, faking it.  I have had quite a bit of debate with these friends about etiquette in Bar’s and food places.  My experience of working in such places is that you appreciate the customers that actually recognise your existence, talk to you on equal terms and values your service.  Hence, I try and build rapport with whomever I meet – where ever I am.

When staff respond in friendly ways, some of my friends say, ‘they are working you for a tip’ or ‘she’s a player’.  Whatever the truth is, such statements are a self-fulfilling prophesy.  If you think you are always being worked over, you won’t make any meaningful connections.  I try to make meaningful connections whatever and wherever.  Even if these connections are fleeting, there is nothing lost in trying to be pleasant.  And, if I am occasionally ripped off, I think of that life lesson as a down payment for the future.

Yet, context is everything.  I see myself as a friendly, warm, caring, charming, kind and generous man.  But, in life, in the hospital and back home, you cannot always be at your best, nor control how your own way of being in the world is interpreted by others.  You should always ask and not assume that people want you to know about their lives or are needing you to support them with their life issues.

I have learnt to try to appreciate those who appreciate me and not to desperately chase the attention and approval of those who do not – well at least not too much. Such a way of being has to be clear about checking on people’s boundaries, fears and insecurities, so as not to impose yourself overly in their lives or take them for granted.  That is the thing about relationships, you can’t take them for granted you have to work at them but, in the hospital, I was in a place where this ability to ‘work at your relationship’ had disappeared’.

Any relationship needs to start from the point that there can be thoughtful dialogue, that the people involved understand/are in touch with their feelings and that they have the freedom to express their emotions.  This process is very difficult when you are drugged up to the nines.  It is hard to trust your feelings and instincts when you are on drugs that have specifically been invented to stop you feeling things.

My greatest pleasure has been seeing my children grow up.  If I had died in Phoenix I would have died a happy man knowing we had done a good job there.  Indeed, in the dark times of the hospital I would dream about playing with them and one day I had a extremely vivid dream that I had fathered more children – just at the moment my wife came into my room and as I woke up I said, ‘I’ve just had the feeling that I am going to have more children’ to which she humorously replied, ‘That boat sailed a while ago’.

The feeling that I would have more children was so incredibly vivid that I wondered if maybe it was a sign that I was looking forward to (hopefully) having grandchildren and that it was a premonition of one of my daughters being or becoming pregnant (that turned out not to be the case).

The meaning of that dream may simply have been that I was missing my kids.  My own children have so enriched my life.  I have so enjoyed supporting them to nurture and value their own abilities and watching them flourish as, now, young adults.  The lesson I learnt in the hospital is that when all around you is in chaos, love gets you through and you have to build from the things you love about yourself and the world around you.  And that is the sentiment of this song by Rodney Crowell, I Know Love Is All I Need:

So I’m an orphan, now, out here on my own

And it’s hard to know where I belong

It comes as no surprise, it happens to us all

Just like the sun will rise, night will fall

I know love is all I need

I know love is all I need

I know love is all I need

That’s all I know

This and previous articles have considered ideas of love, life, death, and loneliness and highlighted that: near death experiences have a huge impact on our loved ones; that whatever your impairment or diagnosis there is no shame in illness nor death; that we must challenge the term ‘normal’; and that there can be solace in the idea that it is how you have lived your life that people will remember and not how big your trophy cabinet, car or house was that will live on in people’s hearts.

My conclusion is that it is hard to take the worst that life throws at us and to channel it into something positive, but we must try our best anyway and if we can draw enjoyment from a love of the smallest things in life; such as simple everyday acts of kindness – the world will be a better place.

The nicest thing about my traumatic experience is that the emotions that the experience has engendered are mainly positive.  In particular, it has reinforced my love of life and people who support that love of life.  It has also enabled me to better understand my need for human contact and to be around warm loving, caring and generous people.  The trickiest thing about the experience is that, whilst reinforcing my love for the world and specific friends who inhabit this world, it has made me determined to confront anything and anyone that seeks to diminish my love of life.

I have absolutely no patience for inequality, for unfairness or for moments where people show a lack of care for their fellow human beings.  Hence, my traumatic experience has reinforced my core values in ways that I need to be careful about, least I let that impatience get the better of me.

Regular readers of this blog will be aware that myself and colleagues have a problem with the term ‘trauma’ (see earlier blog posts with Christina Milervie Quarrell and by Gary Walsh for definitions and discussion of trauma in terms of the negative connotations relating to the term adverse childhood experiences ACE’).

I don’t have much time for the ‘trauma’ term because: it tends to focus on specifically negative aspects of our lives;  it tends to be employed as an excuse for professionals to experiment ‘on’ and make decisions ‘for’ folk rather than promoting the rights based notions that professionals should work ‘with’ folk to ensure everyday people can experience self-empowerment – e.g. where they are supported to activate the solutions to their own life problems.

Indeed, the term ‘trauma’ tends to be employed in a way that fails to see the ability of folk to navigate, grow from and resolve their own life issues.  In this way, ‘trauma’ types of thinking tend to miss the positives, humour and beauty that are constructed through adversity.  ‘Trauma’ discourses also tend to force people into over analysing the negatives of their experience/identity in ways that snakeoil sales people then manipulate for their own financial or personal gain, e.g. by offering ‘cures’ for ‘newly discovered’ causes of ‘trauma’.

Over the years and in this blog, we have been particularly keen to point out that we need not waste resources on employing ‘trauma’ consultants to ‘fix’ us, when research shows that we can overcome our life issues if we have access to emotional and physical resources and/or have a sense of control over our local settings.  For example, we have connected physical and well being to research that highlights the benefits of activities of self-expression and self-empowerment such as involvement in creative arts, sports participation, access to the natural environment and collaboration with local community groups.

We have argued that creative opportunities build empathetic relationships of support and draw out the positive attributes of our identities.  Energetic activities, fun, laughter and enjoyment, are key anti-dotes to pain and suffering but such opportunities are not equally available in our societies.  Access to creative arts, our own culture, history, and the environment is restricted due to the cost of activities, the lack of access to land, the lack of facilities and the privatisation of public transport.

The Corona Virus lock down has highlighted the material inequalities in our society – for example people who own or rent houses with gardens will have had more access to fresh air than those who live in tenements.  As the rules on social distancing ease ,social and material inequality will matter.  For example, wealthy people will head for the hills and their holiday homes, whilst everyday folk will have less options.

The virus has, once again this past week or so, provided evidence of the social class inequalities in the UK.  Social Class snobbery is the main explanation for the ‘one rule for them oinks’, ‘no rules for us’, nature of Old Etonian dominated Westminster politics that resulted in a guy with the initials DC (who lived up to these initials), in a very dumb way, braking the Corona Virus rules.  The fact that he did not apologise and was not immediately sacked – is inexcusable.   The sense of injustice that people feel about the Cummings affair is connected to the fact that we were all willing to make sacrifices but this DC was not and, worse than that, did not own up to his own errant behaviour.

Because of my experiences last year, I have an acute sense for the injustice that people feel about being separated from your loved ones.  It is clear that the Tory establishment have no idea what people are going through and are completely out of touch with the sacrifices that everyday people have born; such as not travelling to see loved ones who were dying and/or not attend the funerals of those that died.

Similarly, one member of staff in the USA was quite out of touch with my world view, he was a sort of glass half empty character.  One day he over stepped the mark when he started discussing my wife and then wondered what she was getting up at night whilst I was stuck in the hospital.

My response was to say, ‘Whatever it is I hope she is enjoying herself.  My job is always to support her happiness.  She has been through so much, in recent years, it would be a sad man that resented her finding happiness whatever form that took, a drink, a night out, dancing or whatever. I love her.  Even if things don’t work out for us after this, I just hope whatever she is doing she is happy’.  This exchanged seemed to change his opinion of me.   Jealousy is a form of self-harm.   Jealousy is a scar we shouldn’t pick at, as Andrew Duhon tells us in the song Comin’ Around

Many times in my life, people have assumed that, because I used to be a sporty guy, my knuckles must drag off the ground and I must have a Neanderthal patriarchal approach to women.  This nurse may have assumed I had an insecurity based on my maleness or because movies like Brave Heart over emphasise Scottish maleness.  Whatever the source of his assumptions, he underestimated me.

My issues with my wife were nothing to do with jealousy and more to do with missing human contact and the way we used to be.  When you have slept in the same bed as your partner for more or less 25 years – it can be very lonely when you, day after day, wake up on your own in a hospital bed.

The male nurse made assumptions about my emotions that were deficit in nature.   A deficit approach looks at people as if they are physically or emotionally broken and assumes they can’t fix themselves.  In my own research I have connected disability rights to Irish research concerning strength-based family support that seeks to challenge deficit thinking.

A strength-based approach looks for the abilities in people, starts from a perspective of minimum intervention, looks to identify the barriers that prevent folk from resolving their own life issues and tries to support folk to put their best side forward in ways that enable them to solve their own life problems.

That is the thing about life, if you can enjoy yourself for your impairments, celebrate other people for their abilities, accept their idiosyncrasies, learn to understand how our different ways of being in the world can be harnessed to do good things and work with the best in other people, our lives can become much more enjoyable.

The play Purposeless Movements explores the issue of maleness and assumptions about disability.  There is a moment in the play when the actors joke about the notion of a hierarchy of impairment as it relates to men.  Questions are posed such as, ‘can he feed himself, can he put his own clothes on, can he toilet unaided, can he stand, can he drink without a straw, can he have sex, can he win a race’ etc.

Purposeless Movements poses these questions in a way that challenges our notions of normality and exposes the fact that there is no normal.  I found no shame in not being able to do any of those things during my spell in hospital in the USA. Similarly, our friend Laurence Clark, who plays one of the main roles in the play Purposeless Movements, has confronted prejudices relating to people’s notions of impairments in his comedy show:

In this show Laurence, and audience members who phone into the show, challenge prejudices about disabled people’s ability to be parents and misconception about specific impairments.

I approached my impairments with no sense of shame because, as has been set out in previous posts, I do not carry around with me, in my head, a hierarchy of impairments.  From the outset the medics told me it would be 24 months before the full extent of my long term impairments could be understood.

My case was so rare, there was no manual on what to do next.  In some ways, I was aided by the knowledge that the medics did not know what my recovery would look like.  The lack of certainty meant I could try, with the help of staff, to push the boundaries for myself.

After a while the staff in America borrowed a tilt table from cardiology to help get me out of bed.  They would drop the rails on my bed, slide me over to the tilt table (agony!) and then turn the table gradually to tip me up onto my feet.  I would make sure there was a sugary drink available for this procedure and at each stage of the tilting process they would stop and I would take a drink to take my mind off the pain whilst the staff checked my blood pressure which they would write on the board on the wall at the foot of the bed.

I used the drink as a psychological crutch to ignore the dizziness and drinking through a straw seemed to help me to regulate my breathing through the pain.  At this stage, I was breathing with very short breaths, I was unable to take big breaths due to a combination of the pain and the lack of core muscles.

The first time I was slid across the bed I had a look to see where the fall possibilities were (the sports coach in me did the risk assessment – what no ground mats or pads – what if I slide off?).  One of the more experienced OTs was an extremely short but very strong, and proudly, Jewish woman.  She noticed where I was looking and said, ‘Don’t worry buddy I’ve got yir back, no one gets past me’. At that time, she was just the type of tough guy ‘back-stop‘ you needed to give you confidence – I took her at her word and she didn’t let me down.

As the table shifted the staff would shout out the degree of elevation and we would stop at three our four points.  It is hard to explain my feelings about the tipping process.  The G-forces meant the pain was excruciating, I was nervous about splitting the stitches but, at the same time, it was exhilarating to be upright again.

The two black straps that kept me tied to the table had to be tight enough to hold me but just have enough give to let my legs and feet slide to the ground when I became upright.  Just occasionally they were put on too tight I and I would dangle for a while before gravity took its course and my feet touched the ground.

I was excited and terrified when the staff took the black belts off.  It was like that scene from Bamby, on Ice.  My whole body shuddered at the shock of having to try to use my legs again.  I could not place my feet where I wanted and it felt like they were not connected to my brain.  Once upright the staff would get me to take a few steps towards the metal stroller where I would pause for a while as the once again checked my blood pressure.

The staff came from all creeds, colours, religions and backgrounds.  In so doing, they highlighted the best of American folk.  The staff in the hospital in the USA were prepared to work with me to push boundaries but the system created limits.  The experienced staff explained the limits to me and enabled me to negotiate ways around these barriers, which I greatly appreciated.

However, the staff also demonstrated all the imperfections of humanity, indeed, from shift to shift, as my care progressed, the more forthcoming of the nurses would be very open about their human flaws, telling me about what was going on in their lives, updating me on the ebbs and flows of their relationships, vacation plans and/or studies.  Once my work field became known, some nurses openly discussed their family issues.

I tried to be as honest as possible about who I was, my own life mistakes and that there is no perfect way to do family or disability. Of course, we all keep parts of our self-back and the real and unreal of our identities can never be that easily explained or displayed over a matter of weeks but I so appreciated the staff who demonstrated their human side and built relationships with me, even though I would, eventually, leave the hospital and we might never see each other again.

In an earlier post, I introduced a poem that was inspired by a Loretta Lynn song about Love. Indeed, when thinking about how to connect the concepts of love, self-awareness and disability, I am drawn to the lines in Loretta’s song that talk of love that is not right:

Love is the foundation we lean on

And all you need is love to ease your mind

It doesn’t have to be right to be called love

When he gives me more lovin’ than a lifetime of looking could ever find.

The line, ‘It doesn’t have to be right to be called love’ has troubled me for many years. It seems to be an excuse for domestic abuse. I know a lot about domestic abuse and not just from academic research.  Indeed, as I have mentioned in earlier articles as a child my parent’s punishment regimes taught me to associate love with pain and it took me a long time to turn my life around and to find a person to have a more caring relationship with.

The song Tattered, Torn, and Blue (And Crazy) by Michaela Anne – kinds of sums up the dangers of needing to experience pain to feel that you are loved:

Seems like I’m always out there looking for the pain

Chasing down the hurt like I prefer it that way

Kicking up some dust just to feel the dirt fall on my face

Well, maybe hearts like mine are always meant to be

A little tattered, torn and blue and crazy

To this day I appreciate strong women who will kick my arse.  As long as they wait till my wounds have fully healed.  But, in my youth, this love/pain ‘thang’ got me into a shed load of trouble.  I had this instinctive ability to fall for someone who, once they had had their use of me, and just in case I had not worked out the relationship was over, would invite me around to turn the light out just as they were about to sleep with my ‘best friend’.

I have mentioned in previous articles that I recently met one of my primary school teachers who enthused about what a lovely, sensitive, compassionate and caring child I was.   During my hospitalisation her words came back to me.  I made a pledge to get back in touch with that person I used to be and to make sure that I positively channelled any harshness that related to my experiences as a child and young person.  Letting go of past injuries is such a liberating thing to do.

People like Brenny Brown tell us to move beyond shame/blame approaches to life and this can be helpful if you are constantly blaming yourself for things you have had no control over.  In a social model sense, it is helpful to move away from placing your focus on your individual deficits to understanding how other people, or the system, is set up to make you feel bad, sad or mad.

Some aspects of Brown’s work is a bit individualistic because it expects you to almost reprogram your-self and does not radically question the socio-political systems that create and reproduce inequalities.  For example, Brown does not really offer a substantive and well thought through analysis of class or race dynamics.  We need to be more radical in our approach than Brenny Brown.  We need to turn our torch on those who treat us badly, those that create cultures of blame, those that create disablist environments, and those that create and exploit hierarchies.  We need to understand that such environments do not happen accidentally.  They arise because specific people, organisations, cultures or structural systems, enable exploitation and set out to abuse the less powerful.

In terms of the current Corona Virus, it is not an accident that more people die of the virus in some countries than others, that more people die in certain social classes than others or that more people die in certain ethic groups than others.  Their deaths will have nothing to do with how much they have washed their hands and everything to do with their lack of access to quality food, housing, protective clothing and/or health care.  Indeed, their deaths will have everything to do with the way that certain sectors of our society have, for decades, washed their hands of their obligation to their fellow citizens.

At her best, Brenny Brown helps folk to put stuff behind them.  At her worst, Brenny Brown makes loads of money telling folk to change themselves but does not turn a light on the socio-economic systems that cause inequality and ill-health.  Brenny teaches us to love ourselves first, and this is important but we do not have to love the political systems nor the politicians that create inequality.

The danger of simplistic ideas about trauma and change is that they fail to recognise that a personality trait can help or hinder you depending on the context.  So, creating your own inner songbird helps protect you when the going gets tough but it may also prevent you from facing up to realities that need to be addressed as your ‘traumatic’ experiences progresses.

I once worked with an exceptional man called John Swain who, along with others, framed the affirmative model of disability.  In its simplest from, the affirmative model is the idea that impairments are not all bad.  That not all disabled people want to be cured.  And, that we can take pride and positives from our different impairments that enable us to exhibit different ways of being in the world.

I love John very much – he and his wife Jude took me in and gave me a place to stay at a very difficult time in my life and I learnt a lot from them.  John demonstrated what non-disabled people find very difficult to understand, that disabled people value their impairments.

Swains work helps us to better understand the line in Loretta’s song, ‘It doesn’t have to be right to be called love’. Having to live with new impairments helped me to make more sense of song the line.  I found a need to reclaim the line, ‘it doesn’t have to be right to be called love’, to promote the idea that we can love our impairments and our impairments do not prevent us from being loved.

Too many off us get into trouble in our relationships because we expect our partners to be perfect.  Words like perfect and imperfect are troubling to writers in disability studies.  Such words are particularly troubling when relating to the idea that people can have a ‘perfect’ ‘look’.  They are troubling because they indicate that there is a ‘normal’ and ‘abnormal’ way to look/be and because phrases such as, ‘perfect 10’, set up the idea that we should all be searching for perfection.

The affirmative model of disability teaches us that it is possible to love our impairments, learn from them and find hope where there is adversity.  But, the affirmative model does not require us to ignore the traditional social model position that we must confront the social, economic and political barriers that create inequality, prejudice and exclusion.

In the next post, Article 10, I will explore the contrast between the affirmative approach to my impairments which characterised my interactions with staff in the USA, with the more social model barriers that I encountered when I was returned to a NHS Hospital in Scotland.

You have been reading an article from the Don’t Let Me Die In Phoenix Series.  Follow the links below to access the other articles in this series.

Don’t Let Me Die In Phoenix Article 1 An 8-1 Dog In A Two Horse Race


Don’t Let Me Die In Phoenix Article 2: ‘He Was Aye Working!’


Don’t Let Me Die In Phoenix Article 3: His Legs Were Weak And His Back Was Bent


Don’t Let Me Die In Phoenix Article 4: Walk Not Alone Among The Flames


Don’t Let Me Die In Phoenix Article 5 The Partial From The Whole:


Don’t Let Me Die In Phoenix Article 6 Everybody Hurts:


Don’t Let Me Die In Phoenix Article 7: Don’t Judge Us By Our Worst Moment Of Our Worst Day


Don’t Let Me Die In Phoenix Article 8: If He Wiz Chocolate He’d Eat Himsel’


Don’t Let Me Die In Phoenix Article 9: ‘It Doesn’t’ Have To Be ‘Right’ To be Called Love’


Don’t Let Me Die In Phoenix Article 10: It’s Hard Tae Catch A breath When Yir Daein’ Mair Fir Less


Don’t Let Me Die In Phoenix Article 11: The Cherry Blossoms of Home 


Don’t Let Me Die In Phoenix Article 12: Come Home


Don’t Let Me Die In Phoenix Article 13  Epilogue – ‘Yir a Lang Time Hauf Deed!’


What We Can Learn From The ‘Don’t Let Me Die In Phoenix’ Series About Post-Traumatic Stress: