Our Butterfly Has Flown

When I was seven, my Mum took me to a matinee performance by Scottish Ballet while Dad went to the rugby. I was already obsessed with ballet without ever having seen any but every year Santa would bring me a Ballet Annual. We found a drawing I did when I was three when I could already read and write. It had a heading – La Fille Mal Gardee. I would not have had a clue what that meant but I knew it looked beautiful and the principal dancer was someone called Nadia Nerina.

The star of the performance that day in Edinburgh was Elaine McDonald. She was a red-head. She stood out a mile from the others. I would not have known that she was Scottish Ballet’s Prima Ballerina and muse to the renowned choreographer Peter Darrell.

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I developed my interest in ballet as I got older and was by this time being taught by a former dancer from Sadler’s Wells. I became particularly interest in Russian Ballet as it was the Nureyev/Fonteyn era. I was particularly keen on the classical purity of the Kirov Ballet. It introduced me to Russian classical music, and then to an overall interest in Russian culture. Of course that led to my decision to take a degree in Russian and I was lucky enough to be sent twice to Leningrad. The first thing I did when I got there was to head for Theatre Square and the Mariinsky Theatre. It was the final day of the season. I found a side door open as cleaning was being done. I found my way to the stage. The theatre was dark but I could see the Tsar’s box and I could feel the spirits of Nijinsky, Pavlova, Ulanova – too many to name.

While back in Aberdeen studying I worked front of house at His Majesty’s Theatre. Scottish Ballet performed there frequently. I would often spot Elaine backstage and make some gesture of respect to her which is very much part of ballet etiquette. She was Madame in my eyes and as such could not walk right past her without acknowledging my respect for her.

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At this time, I ended up spending three weeks in a flat in Aberdeen with two Kirov dancers one of whom had been in the same class as Nureyev at the Vaganova Academy. Vadim Gulyayev could turn a trip to Sainsbury’s into a drama eg yelling “I want Chorny Puddink (black pudding)” to bemused Aberdonian supermarket staff. He and Natasha Bolshakova lived on cigarettes, black pudding and Guinness. Natasha had been Baryshnikov’s partner when he left for the US. She was by far the more famous and actually better dancer but she was sweet, accommodating and calm. Vadim on the other hand was demanding, dramatic and over the top. I firmly believe he behaved in a way that he thought people expected him to behave. I had to translate some cracking lines from Vadim including telling me to advise the Board of M&S at a sponsors’ lunch that they looked like “a bunch of old Bolsheviks”. The tantrum at the technical rehearsal for their performance which was to be televised in which Vadim threatened to walk out as the TV people said they could not film with the lilac filter on which he was insisting, was legendary. I believe the lighting man that day was one Donald McLeish, Elaine’s partner. Little did I think our paths were to cross again.

Flash forward a decade or two and I am by this time in London trying to rebuild my life after illness. I volunteered to represent mental health service users on a new User-led Organisation bringing together service users and carers from across the board in terms of disability or health condition. It was to be called the Independent Network – the InGroup. I was invited to lunch by the Chair who was representing Carers. His partner was disabled after a stroke. For some reason we got onto the subject of Scotland and ballet. He said “you may know of my partner Elaine”. I said “not Elaine McDonald”. He replied “yes, Elaine McDonald”. He was the very Donald McLeish who had done the lighting for the Aberdeen International Youth Festival at which I was Russian translator.

It turned out they lived near me in Earls Court and a long-standing equal relationship between two independent people had not by choice, become that of carer and caree. I couldn’t believe it as the odds against us meeting at the other end of the country after such a long time are infinitesimal. If there is such a thing as synchronicity, this is a prime example.

We commenced to work on our plans to set up this independent network to ensure Personalisation was properly implemented in the Borough. I was to find out early on that the word “independent” and the Royal Borough of Kensington and Chelsea was the ultimate in oxymoron. We soldiered on. We had a meeting at the Department of Health who were very supportive but even they described RBKC as “patrician”. It was doomed to fail. Every opportunity to scupper what we were doing was taken. We were too clued in, too vocal, too…independent. In the end we were forced to fold. Gradually, however, I had learned his story which is also Elaine’s story.

Donald had to hand his identity over in return for the “carer” label as Elaine needed a lot of care particularly at night. RBKC in order to make “efficiencies” cut her night care. What they expected her to cope with was an indignity neither she nor her husband Donald could bear.

Donald was staying up all night to help as he would not countenance her going through the indignity of what the Royal Borough believed was acceptable. He also carried on with his activism and advocacy during the day. He would on occasion have a six shot espresso just to keep going. Naturally, it had a devastating impact on his health and the resultant treatment he has had to have with this trauma and the physical impact has cost many times more than had RBKC had provided the night care Elaine needed.

Ballerinas are tough cookies. Elaine took RBKC to court with the help of the Disability Legal Service. It took years and it was devastatingly stressful for both of them. RBKC did not hesitate to use every trick in the book to make life as difficult as possible for them both. They persevered. It went to the Supreme Court and as a result, in putting together care packages, Human Rights have to be considered.

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Elaine died at the time of writing, two days ago in a chaotic Acute Assessment Unit in a public bay in Chelsea and Westminster Hospital. The staff were wonderful but once again her dignity was compromised. It was in the early hours of Sunday morning. There had been a Chelsea match that day meaning the chaos was ratcheted up a few notches.

She deserved better.

However, the butterfly has now flown. She is free of pain, and the daily struggle to remain as independent as possible while dealing with severe disability with totally inadequate care. Donald can now rebuild his life where he chooses his own path and rediscover an identity beyond that of carer.

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Elaine leaves behind a legacy of bringing pleasure to audiences all over the world, and to people living with disabilities who must now have due attention given to their Human Rights when Care packages are being considered.

She was a remarkable lady – funny, full of grace right until the end, feisty and determined. To have been her friend is something I never expected. It always felt, and still feels, like such an honour.

RIP Elaine McDonald OBE 

Life by someone else’s numbers

You are in Recovery, they told me when I last saw the Community Mental Health Team. This meant apparently that the only support I was going to be offered was access to a Work Adviser and even that never happened. Apparently at that session with a Psychiatrist and a Dual Diagnosis Worker I was not in need of any further help because, and I quote from the written report of the assessment, “she was fashionably dressed in a matching green top with neatly applied eye makeup”. Do they not GET after nearly two decades of using their services that I am able to put on a mask in even the most extremes of despair? How else would I manage to put one foot in front of the other?

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Less than a month later, I was admitted to hospital in a deeply suicidal state. I was “lucky” to have been admitted at all apparently as clearly I “had capacity” and therefore not a priority. I was about to be kicked out of A&E firmly intending to end my life after I had got my beloved cat Izzy to a safe place. If I had not bumped into a compassionate member of the psychiatric liaison team whom I trust on the way out of A&E, and told her my plans, I believe I would not be sitting here writing this blog.

I used to think I knew what Recovery meant. In the substance misuse world there are very many interpretations of this concept.

The National Council on Alcoholism and Drug Dependence in the US say this:

Essentially, recovery is a complex and dynamic process encompassing all the positive benefits to physical, mental and social health that can happen when people with an addiction to alcohol or drugs, or their family members, get the help they need.

The Substance Abuse and Mental Health Administration (SAMHSA) also in the US define it thus:

“A process of change through which an individual achieves abstinence and improved health, wellness and quality of life”

They expand this definition into 12 “Guiding Principles of Recovery”

There are many pathways to recovery.
Recovery is self-directed and empowering.
Recovery involves a personal recognition of the need for change and transformation.
Recovery is holistic.
Recovery has cultural dimensions.
Recovery exists on a continuum of improved health and wellness.
Recovery is supported by peers and allies.
Recovery emerges from hope and gratitude.
Recovery involves a process of healing and self-redefinition.
Recovery involves addressing discrimination and transcending shame and stigma.
Recovery involves (re)joining and (re)building a life in the community.
Recovery is a reality. It can, will, and does happen.

All pretty harmless stuff really but a lot of that is conspicuous by its absence in how Recovery is now viewed in Mental Health services here. I am happy to see my recovery from alcoholism as a process however. That way it guards against the complacency that could well set in if I suddenly get into my head that I am “recovered”. Alcoholism is a condition typified by denial.

And then the “model” was taken on in the mental health world. Initially, I was all for it. I was sick and tired of being railroaded into activities that professionals considered would be good for me. I was never ever going to enjoy playing bingo on wards even when they brought in cold KFC as a “treat” to go along with it. On discharge I was no way Jose, ever ever going to be into gardening for therapeutic purposes. In rehab I loathed with a vengeance being made to make a rag-rugged lavender cushion, and would far rather do my own art than paint by someone else’s numbers. This is my trouble. I have never painted within someone else’s numbers and cannot for the life of me stay within the lines….

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This, it seemed to me, might truly allow me to define what my own sense of “quality of life” was. This was for me going to be having a safe and QUIET place to live and after that find ways to “recover” my rights to be an equal participant in society. Yes, I wanted to work but this would only be possible, as I discovered to my cost, if there was a stable foundation on which to build this form of self-actualisation.

Why do I say “to my cost”? Early after discharge from my first very long admission to a mental health ward I stumbled into a meeting of my local branch of Mind. It happened to be on the subject of employment and was addressed by Doctor Rachel Perkins, a leading proponent of the Recovery model and very much of the view that Recovery and Work are bound together. At this time, I was far from well. I could appear to have “capacity”. However, I was deeply traumatised by my experiences of workplace bullying and the total lack of support from my employer when on their watch, I descended into the whirlwind of PTSD and addiction. I had been a complete workaholic. I thought my job title was my entire identity. Work was a drug to me and ended up as destructive. I saw, and still struggle not to see, work as the only indicator of worth. Without it, I did not exist.

Dr Perkins was saying exactly what I wanted to hear. I pushed myself into service user involvement work and then a work placement with my mental health trust. However, I was going home every night to a totally chaotic house. I had been housed under a known crack den when what I needed was peace and safety. I had neither. I had to adapt to the addict above me’s crack cycle which meant he would be up for three days and nights, then pass out for three more days after which he would be off on a mission to get more drugs, and so it would go on. I was doing my placement in the local drug and alcohol service, in short working with people in the chaos of addiction then going home to try to survive in yet more chaos of addiction. Of course I became ill again. Of course it delayed my “recovery ” even more.

In fact for me, given the nature of my unbalanced relationship with work and my confusion of “work” with “worth” the ‘work as an outcome’ message rammed home by the Recoveristas was deeply damaging. Only now twenty years after diagnosis, do I finally realise that the past few months in which I have been reduced through physical illness on top of further work-related trauma, I have paradoxically been closer to “recovery” as defined in the above principles than I ever have.

The doctrine of Dr Perkins et al fails to recognise the importance of the base of the pyramid that is the Hierarchy of Needs. Propelled by the agenda of a government that sees the like of myself at best as “stock” or at worst as subhuman somehow wilfully avoiding “doing the right thing”, they went straight for “self-actualisation”as if this alone was enough. It makes me wonder how many of the leading proponent of the “work cure” have themselves experienced the devastation of having no safety from squalor, poverty and negation and the sheer impossibility of achieving “self actualisation” under these circumstances when life is reduced to mere survival and nothing more.

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Housing – the missing link

I estimate that lack of safe housing delayed my recovery from a combination of post-traumatic stress disorder (PTSD) and related substance misuse by some fifteen years. It actually added layers of trauma. I was diagnosed after the death of my colleagues in the course of my job in international relations and in order to try to cope I self-medicated with alcohol. That in combination with an unsupportive working culture led to my retirement on ill-health grounds at the age of 32. I lost my home, as after sick pay came to an end I was unable to keep up mortgage payments.

I moved back in with my parents and with their support I appeared to be on the mend. I somehow succeeded in getting a job as Political Administrator to a Member of the European Parliament. Away from my family, I quickly disintegrated and starting on what became a dehumanising process in which what remained of my identity and my mental and physical health was shattered. Very soon I had no job, no home and was adrift in London. I managed somehow to get myself to my Borough Town Hall to declare myself homeless and they agreed to house me. I stepped that day onto a joyless merry-go-round that was to spin on for more than a decade.

Life for me became entirely about trying desperately to get help and find ways of getting my fragmented self safely across a sinkhole-ridden service landscape. My mental health and alcoholism were worsening and I became even more of a challenge to the system. I was too mad for Substance Misuse services, and too drunk for the Mental Health services. There seemed to be a chasm between Health and Social Services in Britain, with Housing seeming to exist in isolation on some other planet.

Over and over again, I appeared in hospital Accident and Emergency only to be patched up and packed off to another dingy room in some other bed and breakfast or hostel well away from where my support, such as it was, was situated. Every time I would be discharged back into these unsafe squalid places where my visible vulnerability led to me to be preyed upon leading to physical and sexual assault, and rape.

My response was to drink even more to cut myself off from my reality, and had I not done so I believe I would have taken my own life. The drinking would inevitably lead to yet another admission and a few days later another exit again back into oblivion.

I felt totally disconnected from the person I was before I became unwell, the person who ran international projects and was commended for her work in the Chernobyl zone. I knew she existed but was cryogenically suspended in another room in some other part of the building to which someone else with all the power had the key.

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Turning points

I was eventually given a place in a supported housing project. For the first time in years I had a safe roof over my head. The organisation clearly understood the importance to their client group often battered into oblivion by mental health and substance misuse issues of an environment in which it might just be possible to regain some dignity and start to heal. I cried with joy that I actually had a kettle and a toaster. I recall my first night there. I was so unused to being in comfortable surroundings that I thought I might not be “allowed” to sit on my bed so I sat totally motionless on an armchair not quite believing I had the right to be there.

I felt devoid of any rights by this stage. I had been stripped down to nothing and re-labelled as “vulnerable”, “complex” and “hard to reach”. I absorbed and became what was written on my labels.

It was to be a long and hard process of pushing the rock up the hill from then on but at least the rock started coming to rest a little further up each time.

I recovered sufficiently to move on from Turning Point to a social housing tenancy. This brought with it a whole new range of problems. I was simply plonked in the nearest available space with no consideration for my mental health or precarious recovery from alcoholism in this case under a very well-known crack den. Under such conditions I stepped back again on the merry-go-round of relapse and hospital admissions during which every time “unsafe housing” was writ large on my notes. I have had seriously problems with the conditions in which I was expected to live. My place was so damp, I had mushrooms growing out of the ceiling causing me long-standing respiratory problems. I was subjected to extreme anti-social behaviour by neighbours to whom it had been divulged by a Housing Officer that I was “mental”.

It became so unsafe, after yet another relapse, I became trapped as a so-called “bed blocker” for just under a year at a cost per night of more than the Dorchester on an acute mental health ward. The police had deemed where I was living too dangerous. I could have told them that years before if I had ever been asked.

These days I finally have a home in which I can live safely.  It is far from perfect but I finally feel secure.

By rights, I could “recover” here. Healing does not seem like such an alien concept an in in fact I might even flourish. However….

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Enter DWP Stage Left.

For whose Benefit?

These days the Recovery Model seems based a great deal on replacing terms with “positive” language. We are no longer subject to the mores of Mental Health Teams, they are Recovery or Wellbeing Teams now though in essence are exactly the same or indeed more difficult to access. We are told our labels to do not define us, that we are untapped resources, and that diagnoses must be cast by the wayside of the Yellow Brick Road to Recovery. We are taught to be resilient, regulate our emotions, and exercise radical acceptance even of the most unacceptable. We must be positive. We must be mindful. We must, we must, we must….

Buoyed up by all this positivity I now wake after a refreshing sleep in which I dreamt of unicorns and rainbows. Bluebirds lift my Egyptian cotton duvet from me and I rise in my lacy nightdress and get to my knees for my morning Mindfulness.

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Then it happens….

There is a loud “THUNK” by the front door that can only mean one thing. Today’s post has contained a Benefits Form.

In one fell swoop all the fragile attempts at rebuilding a sense of worth crash to the ground.

For these forms it is necessary to clear away any vestige of positivity, and hope to God the professionals charged with providing the evidence you need are also able to make this shift. Then you have to describe in depth your worst days. I want to FORGET my worst days. I WANT to put them behind me but the system will NOT allow this. I hate to have to put in writing that I can’t manage to take care of my flat, and at times, I can’t summon the energy to have a wash. I HATE having to make sure I resist the urge to qualify any of it with something that might make me feel that bit better about myself.

And for the finale, there is the medical assessment itself. For that, you need to leave the mask behind. You MUST expose yourself in your raw and vulnerable reality to some under-qualified or unqualified stranger who has targets to make sure you are off their books for good. It is utterly humiliating, removes me from whatever sense of my own humanity I have been able to drag together, and it is designed to break people not build them up. I arrived at one with my Dual Diagnosis Worker. I was shaking with fear. The assessor commenced by barking “WHAT IS DUAL DIAGNOSIS?” and so I knew I was stuffed. The questions included a repeated demand to know why on earth I would want to leave my job in the House of Lord. He was genuinely incredulous. I had to tell him several times that it was not about whether I liked it there or not, it was the fact that I was too ill to make it out of bed at that time. He was fixated on whether I ate pot noodles. He wanted to know my preference of corner shops over supermarkets. He claimed to be a Doctor. I have no idea of what.

After this experience I felt so overwhelmed I howled like a wounded animal in the toilets of Balham Assessment Centre which has to be the grimmest venue they could find. Had the Dual Diagnosis Worker not been there, I may well have acted on my powerful impulse to end my life on the rail track.

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I firmly believe that left alone, I will gradually build myself up safely to make a return to work but it hangs on a knife-edge. Just one communication from the DWP has me fighting the impulse to start drinking to oblivion and punishing myself for the failure I have very clearly become. This process wrecks any prospect of real “Recovery” as I define it. It ends up costing way more as each time it causes me to relapse, and each time it falls to ever-dwindling services to help me glue the fragments together.

It is not about rebuilding. It not about recovery. It is about punishment, punishment from a system that assumes paid work is the only indicator of worth, the only indicator of one’s right to occupy a place in society.

At the time of writing, I am going through it all again this time due to the transfer of Disability Living Allowance to Personal Independence Payments. I was on an “indefinite” award of DLA which matters not one iota. I have been discharged from mental health services for no apparent reason so have no right to access supporting evidence from them. I am not sure my GP even knows who I am. Putting in my claim by phone was in itself soul-destroying – barked questions from what appeared to be some kind of automaton “Are you terminally ill meaning do you expect not to live for more than X months? Do you have Downs Syndrome? Do you have Dementia?” I sobbed all the way through it.

The reality is I may well not survive yet another round of this ritual humiliation. I feel battered and bruised by trying so hard to rebuild my life under this punitive system which is designed to foster hatred either from other towards myself as a “scrounger” or the self-loathing which comes from feeling as though my nose is being repeatedly shoved in the pile of excrement that I, in those moments, believe I have become.

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It is not easy to write this but this is the reality. Bodies like the Royal College of Psychiatrists need to hear this. They need to try to understand the realities of the gulf between the Land of Oz of Recovery, and the grim black and white reality so many of us face.

I know many doctors are burned out and when burnout happens, it is hard to access ones own humanity. I know as I have been there. It could be easy to fall into the trap therefore of joining in with the “scrounger” narrative around “fake patients” simply putting on an Oscar-winning performance to try to get something for nothing.

Have you have become so detached from your own Compassion, from the values that made you go into healthcare? Could I ask that before you judge someone before you who seems “well-presented” with “capacity”, and therefore you may consider,  likely a malingerer, why not pause for a second and contemplate the possibility that there is a person in pain and in need of help who is hiding for dear life behind a very well constructed mask without which they would simply dissolve on the floor.

If even then you still can’t see beyond your own biases, then think about the waste of resources as time and time again, people like myself end up so traumatised by the impact on top of poverty, of being graded and degraded that we end spinning out of control in the revolving door.

What do you do then? Do you sigh and write us off as “fakers” draining your energies and precious resources, or do you dare to look behind the mask and your own assumptions…? Why do we not all risk being our authentic selves and then we might understand the pressures you are under, and you will perhaps realise that when we appear in front of you, we may well be well-dressed and articulate, but may just be a person in pain who needs your help. 

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First do no harm.

 

With thanks to Dr Wendy Burn, President of the Royal College of Psychiatrists for helping me find the motivation to write this blog. 

The section on housing is adapted from my chapter in a recently published book https://www.amazon.co.uk/Social-policy-first-Peter-Beresford/dp/1447332369. Thanks to Peter Beresford and Sarah Carr for inviting me to write about my Housing experiences. 

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Together we can reach the top of the castle.

A person’s problem looms large but it is only a part of that person. We need to enlist and unleash the rest. You cannot mobilize on a deficiency any more than you can build on quicksand
Edgar Cahn
Author of “No More Throwaway People” & founder of the Timebanking movement.

Our work with our Sister City Bulawayo in Zimbabwe seemed to me to be based on a premise that we with the money and therefore the power, somehow had the right to dictate to those with less wealth and therefore less power, what was good for them. We expected nothing in return but a large dollop of gratitude. Right from the start I felt in my guts that this approach was wrong, that it was patronising and wasteful of the resources I could see were in abundance in the two communities in receipt of our largesse namely Homiel in Belarus, and Bulawayo.

I ended up on the receiving end of decisions regarding what was good for me, made by the largely well-meaning who held power over me after I became ill. I knew to my cost how it led me to be even more disconnected from any of my strengths as I became nothing but a bundle of needs to be met, and symptoms to be managed.

I knew at least that my early thinking that this was a wasteful and ultimately damaging view.

Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others. Compassion becomes real when we recognize our shared humanity.
Pema Chödrön, The Places That Scare You: A Guide to Fearlessness in Difficult Times

How did I learn to challenge the belief that compassion meant sympathy and was often more about the ego of the giver than the welfare of the recipient?

In the 1990s I was extremely privileged to be asked to arrange a visit to Aberdeen by a group of pupils from the King George VI Memorial school in Bulawayo. This was a special school in very many ways. It was for children and young people living with disabilities. They were in the UK to take part in a specially adapted Adventure holiday in Devon and they wanted to take some time to visit us in their Sister City.

My colleague who ran our Bulawayo Trust organised for the group to stay with young people with Learning Disabilities at the Rudolf Steiner School on the outskirts of Aberdeen and they helped me with the programme. It was my first experience working with the LD community and I noted that involving the took us down more creative and unexpected routes than I would have come up with by myself. They had the idea of showing the group one of our “indigenous crafts” and so introduced the group and me to a traditional “bucket mill” making wooden buckets out of wood turned using a water wheel.

I loved this group from the start. They were all highly motivated and determined. What I learned from the most however was that each pupil had a skill or ability that could be of use to one of the other pupils. Thus Thandiwe who was a wheelchair user due to having brittle bones disease had been taught sign language. She was the interpreter to the deaf pupil Umpumelelo who in turn, being able-bodied, helped Thandiwe get around in her wheelchair. I loved this assets-based approach that stressed the fact that we all, irrespective of what else is going on, have something important to give, if only the conditions were in place to allow us to do so. This became an important part of my own “journey” out of the passivity of becoming disabled myself, in my case having long-term mental health issues due to trauma

We took the group to Crathes Castle. We had a Scottish Tourist Guide showing us around and she, albeit in a kindly manner, announced that there was “no way” the disabled kids would be able to get up the spiral stairs. I mean there was even a trip stair designed to make the English invaders fall over and so give the Scots upstairs more time to either get out or get ready to fight. These kids were fighters too. As soon as their ability to get to the top of the castle was in doubt, their determination to do it increased a hundred fold. They helped one another up. Some had to go backwards up the stairs on their bottoms. It took a long time but of course, they did it. They all signed their names triumphantly in the Visitors’ Book right at the top of the castle. This small episode said so much about the ethos of the school and the extent to which it had been embraced by its pupils.

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They visited the Town Hall where my office was situated and we invited them to join us at a civic reception. Here they all are with my two guest contributors Nqobile and Mandisi right in the centre looking rather like the King and Queen on their thrones. I can tell it must have been raining as my hair is frizzy but it brings back so many memories to see them here with the guys with Learning Disability who accommodated them and helped me with the programme. My colleague Doug is in the photo, as are other members of our Aberdeen Bulawayo Trust which Doug administered. The group from left to right are Thandiwe, Lynda Fincham, Umpumelelo, Mandisi, Nqobile, Leanne, and Rosemary Drayton.

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Nqobile was born had severe cerebral palsy but he was one of the most determined young people I had ever met. There had been few expectations of him when he was born but they hadn’t counted on the sheer force of motivation in him as he grew up. I could tell he was a highly intelligent young man but that people’s assumptions regarding his difficulties with speech and so forth, somehow blinded them to this fact. I found communication with Nqobile very easy right from the start. I took on a challenge to find a way to get him some training in a specialist college. He was and still is the only African ever to get a place at Beaumont College in Lancashire. It took a lot of negotiation but together, we did it. Thanks to the seed of an idea planted after talking to Dominic Makuvachuma from Mind, also from Zimbabwe, I managed to track Nqobile down via Linked in so I am now able to give you Nqobile’s thoughts and reflections on the impact that visit had on him:

Over to you, my Zimbabwean younger brother:

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No Mountain too high!!                                                                                                                                                                                                                                         
The success story of a young man privileged to live with cerebral palsy.                                       
Before I left school in 1993, I was chosen to be one of six pupils to be part of the Calvert Trust Tour to England, Scotland and Devon, for three weeks. We participated in a range of sporting activities designed for people with disabilities. We also visited Bulawayo’s twin city Aberdeen and Number 10 Downing Street. Aberdeen City Council welcomed us by a reception and tour around the city with other young people with disabilities. And we were met by the wife of the former British Prime Minister John Major, behind the world’s famous door.

While I was in Aberdeen God opened an opportunity for me to have a chat with the twinning officer and I shared my vision of pursuing I.T. at Beaumont College and she expressed her interest to try to assist me to help me. I have learnt that when God puts a vision in a person He provides the right people to help to achieve it. After three months when I got back home, after three years of attempting to be enrolled at college and seeking for financial assistant, God used Miss Alison Cameron to negotiate with college authorities and College agreed. And the college offered a short course for three months and tuition fees came down from 25 000 to 4,200 pounds just for me.                                                                                  
Upon my return to Bulawayo in May 1996 I worked for the City Council of Bulawayo on a 2 year contract in human resources section as clerical assistance and assisting in training staff to use PCs. From 2001 to 2004, I started a printing business; I designed business cards, letterheads etc. from 2004 to date, I have been doing digital photos slide shows using Proshow Producer, sophisticated video editing program which allows editing video and mixing photos with sound track, all in many different formats.                                                      
It was interesting to share with other young people from Aberdeen their experiences.

Nqobile

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I am so proud of Nqobile. He has things he wants to achieve. He now lives independently, but I know he’d love to be able to drive. He has already had one lesson. If anyone can do it, he can. He does motivational speeches throughout Southern Africa. I am delighted I played a very small part in his journey.

Another of the group to whom I became very close was Mandisi Sibanda who also has cerebral palsy. She also had a great sense of humour. She was obsessed with British comedy ‘Allo ‘Allo and was always coming out with “Oh Rene” with exactly the right French accent. One day I was worried that her mobility level had declined. In fact she was pretending to be Herr Flick of the Gestapo so was mimicking his limp. She was also really into Mars Bars. I will allow my younger sister from Bulawayo to talk about this in her own words. She is never short of a few words….

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My name is Mandisi Sibanda. I was born on11 May 1978 with a disability called cerebral palsy. l started school at the age of 4 years old at King George Vl Memorial School in Bulawayo, Zimbabwe. By that time I wasn’t able to walk and l was using a wheel chair.
The day l shall never forget is when we were from a walk at Ascot shopping center. I recognised my mum from a distance. My mum had come to visit me. By then she was teaching in Victoria falls. I jumped from the wheelchair and l said mum l can walk and it was a big surprise for mum to see me walking. She prayed hoped for that and it was possible with the prayers and physiotherapy l got from KG VI.                                                         
I did my primary and secondary schooling at KG VI. l want to give thanks to Miss Rosemary Drayton who was our physiotherapist. And Mrs Lynda Fincham our headmistress by then who accompanied us on our trip to England and Scotland in April 1993 That was our journey of our lifetime.                                                                                          
That was the time when we met the beautiful Alison Cameron who was then the Twinning Officer between Aberdeen and Bulawayo. I really value her friendship and sisterly love she gave us. I remember the Mars Bars.                                                                                                               
I had a lot of experiences from KG VI we were always out on trips to places of interest. I was very much inspired by the trip overseas. I became a disability activist and motivational speaker for people with disabilities. I would still love to travel all around and my role model is Alison Cameron my big sis.                                                                                                    
After my schooling l did an Information Technology Computer course and l worked as a self advocate for people with disabilities with a local NGO and l used travel around Zimbabwe motivating people with disabilities which mainly focused on Children and Young People with disabilities.                                                                                                                                       
I was raised by a single parent and she is now in her old age. I am very ambitious still want to see the world and l do believe in dreams come true.

I would love to meet Alison again.

Mandisi Sibanda

 

I see that this wonderful school celebrated its 60th anniversary last year. I can see from more recent photographs that at the centre, they continue to create the conditions for young people with disabilities to live life to the full, to unlock skills, and foster the kind of determination which each member of the group had in spades. Their motto is “Still not giving up”.  I try to live my life according to their example.

“Be curious and however difficult life may seem, there is always something you can do and succeed at” Professor Stephen Hawking. RIP

 

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