society

Physical vs Mental disabilities

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Lost Identity
M.Howie, David

In the book ‘Lost Identity: The Search for Well-Being I talk about neurodiversity. I have come to the conclusion- after watching people talk about their neurodivergent minds – that I don’t understand neurodiversity- not even a little, not even at all.

If I don’t understand neurodiversity, when I self-diagnose as neurodivergent, post-childhood medulloblastoma, how can anyone who is neurotypical? I suppose they can’t, and I suppose they never will. That is, unless society starts to have a conversation about mental health.

As I say in the book, I have decent well-being; for the most part, I am happy with life. Of course, in an ideal world, I would be working in a profession focused on social policy and research, one that encompasses every citizen and fosters community development. Earth, however, is not a utopia. Earth is the island of necessity. On the island of necessity, no one gets what they want, and even fewer get what they require to live well.

For people who are neurodivergent, the WHO organisation suggests that it could be as high as 40%. We mask in plain sight. Not hiding, but also not having the strength to be ourselves.

I must admit, I find myself in a very unsettling situation. I thought that when I published the book, one of two things would happen. One. It would be the end of the project, and a new one would begin. Two. I would have achieved enough to move on with my life, so that I could perhaps now pursue a career on the neurotypical island of necessity. Something, though, is pulling me back. There are more chapters to be written. I alone can write them. I cannot explain it. There are many better writers than I. Why then must I be the writer of the next chapter? The only explanation available is that the book/project is not yet complete.

Someone on TikTok describes 24 hours in their life as a routine that they cannot complete, a never-ending cycle that never seems to end. Groundhog Day. Or a time loop, if you are a Sci-Fi fan. Lucky for me, my mind is not stuck in a time loop or doomed to repeat the same day over and over, like Bill Murray in Groundhog Day.

I don’t know how far down the rabbit hole the far end of the neurodivergent mind goes. From what I understand- from watching TikTok videos- it is disabling. What I do know is that I feel compelled to follow the white rabbit. Compelled. Yes. But in my own time. I am not free yet to leave the island of necessity and join the island of utopia.

I am not that far down the rabbit hole to qualify for free money from the state to do whatever I like all day. Not that that is what neurodivergent citizens at the dark end of the spectrum are doing. Remember, neurodivergent citizens are not a homogeneous group; it is not logical. It is more like a prison for the mind. I have a front row seat to the prison. Or at the movie theatre, if you prefer. The difference is I can leave and return. So many citizens don’t.

Physically disabled citizens

Subjectively, physically disabled people do not see the world in the same way as a neurotypical citizen. I don’t like the word damaged. That would be a neurotypical perspective. Without the lived experiences of a neurodegenerative citizen, it is impossible to understand how the neurotypical mind works.

That is why a one-size-fits-all approach to the integration of physically and neurotypical disabled citizens will not work.

What is next?

I start working on the second book: The Search for Well-being: Never Ends. It is a working title. It has no chapters, paragraphs, or words. The shape the next book will take shall depend a lot on what happens in 2026, after the Scottish parlament election. More importantly, though, the next book will depend on my subjective understanding of where my mind lies on the neurodivergent spectrum.

This blog post serves as a brief introduction to the steps that follow. As a neurodivergent person, self-diagnosed, my steps can change daily. What would it be like to live if your daily steps just repeated?

Social Enterprise: A-LEAF

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Society is structured to grow the gross domestic product (GDP). However, allocating available resources to grow GPD results in the most vulnerable citizens becoming an afterthought. The social enterprise/ framework Iain and I designed after completing our MSc in social innovation empowers citizens and communities by focusing on the diversity, inclusion, and belonging model.      

It is of utmost urgency that we address the critical issue of empowering disadvantaged citizens in Scotland. The evidence is stark: Disabled individuals confront substantial inequalities and are at a higher risk of living in poverty. This is a policy concern and a societal crisis that demands immediate action. I am deeply concerned that the Scottish Government may lack the capacity and resources to enact the required changes. The time for action is now.

While I acknowledge that the A-LEAF framework may not be a panacea for all the Scottish government’s challenges, I am confident it could be a significant step towards a more inclusive and equitable society for disabled people. This is not just a proposal. It’s a beacon of hope, a potential catalyst for positive change. Given the opportunity, this framework could not only enhance the well-being of countless disabled citizens in Scotland, but it could also transform their lives, offering them a brighter future. Let’s unite to envision this potential, understanding the profound impact it could have on the lives of our fellow citizens.

The A-LEAF framework I propose is more than just an abstract idea. It is a practical solution rooted in my personal experiences and the expertise of my graduate colleague, Iain. With over thirty years of collective experience, A-LEAF is based on the belief that citizens’ well-being is enhanced when they have a personal and professional identity, when social policy supports their right to live in the community, and when social norms allow them to do so. This is not just a theoretical concept but a tangible framework that can be implemented to bring about real change, instilling confidence in its practicality and effectiveness.

The A-LEAF framework is essentially the Iron Triangle on Sustainable Steroids. It aligns seamlessly with the Scottish Government’s well-being/ circular economy policy and advocates for a new fourth social enterprise sector. This framework is designed to bolster green growth and foster co-production in the three existing sectors – third, private, and public. Its implementation could significantly enhance the Scottish Government’s initiatives and policies, leading to a more inclusive and equitable society.  

Network theory is the idea that organisations within society collaborate to make society function. Each node does its job or the job it has a competitive advantage in—it can complete the job better and generate more profit than any other node/organisation. The A-LEAF framework enhances the network for the common good by placing it in a strategic action field. Every action field network node works towards the well-being/circular economy.        

In academic social enterprise theory, there are three typologies of social entrepreneurship. Schumpeter inspires social engineering thinkers to believe that a newer, more effective social system is designed to replace existing systems when systems are ill-suited to address significant social needs. As a social innovation graduate, a citizen of Scotland and someone disabled by the medical model, I have sympathy for this thought pattern. However, such political philosophy/ social enterprise typology needs to be revised. Such philosophy has no place in contemporary society.

The typology operating in society presently is social bricoleur. Social bricoleurs perceive and act upon opportunities to address local social needs. They are motivated by lived experiences and know how to address social problems. However, while Social bricoleurs have the lived experiences and knowledge to address social issues, the barriers consist of capacity and resources. Social bricoleurs are typically charities requiring financial capital and rely on top-down government support. Providing resources and capacity exists in the state. I have zero quarrels about this social policy/typology. Fundamentally, the resources and capacity do not exist. Levels of poverty and SCOPE’s call to action show evidence enough. Additionally, I would suggest two things. One. The current political framework of the Scottish political system is based on the Social bricoleur typology. Therefore, funding is allocated to charities/social enterprises that can mitigate social problems over the short term—providing the Scottish government with outcomes that support the national performance framework. Two. Social bricoleur thinking resulted in A-LEAF not receiving funding from the Scottish government’s social enterprise funding body.  The Scottish Government’s refusal to fund A-LEAF lowers my subjective well-being as funding refusal has resulted in my continuing quest for a professional identity.

For readers unaware, the Scottish national performance framework is effectively the United Nations sustainable development goals (UN SDGs) as applied to Scotland.  The nugatory differentials between the UN SDGs and the Scottish national performance framework are significant enough to propel A-LEAF into the typology of social constructionists – social constructionists build and operate alternative structures to provide goods and services addressing social needs that governments, agencies, and businesses cannot.  

Iain and I had not advocated for a dramatic system change with the A-LEAF framework. Our request was merely to empower citizens and support the Scottish government’s social policy. The chapter has attempted to inform the readers of my subjective understanding of the operation of the Scottish political system, how the political system results in disabled people facing vast inequalities, and how Social bricoleur thinking provides possible barriers to necessary required system changes. The remainder of the chapter will spotlight the A-LEAF framework.      

The fundamental theory of the A-LEAF framework is that a community’s collective well-being is empowered when citizens have a personal and professional identity that provides subjective well-being and simultaneously provides the person/self with good mental health. However, there is a direct correlation between personal and professional identity, social policy, and social norms. The workplace, the community, and government policy act as a tripod that supports citizens’ subjective well-being and provides good mental health. Absences of employment, paid or unpaid, reduces subjective well-being. Prohibition of the right to live in the community lowers subjective well-being. The perception that the government is not listening reduces citizens’ hope. As a society, we must ensure that citizens in our communities are provided opportunities to live well.

In the third sector, there is a focus on ‘self-management’. Self-management is an elongation that prolongs the required change. It is a mitigation method used to mitigate the effects of an ill-run society. I recognise that communities within communities can also empower citizens and foster the idea of citizenship. The problem, however, is that “a rising tide lifts all the boats” only when the focus is on the little boats.

Part one of the A-LEAF framework shows that citizens’ well-being correlates with each side of the tripod. The second part discusses what unites every citizen: waste. Rich, poor, disabled, and non-disabled, every citizen, every household, every institution, and every state produces waste.  How do you turn waste into a monetisation opportunity which empowers citizens? Run the four Rs of the circular economy in reverse. Instead of reducing, reuse, recycle, and remove. Society should focus on recycling, reusing, reducing, and removing. Waste has a value that can be monetised. Plastic, glass, metals, and fabrics can all be recycled. The fantastic part of recycling is that a community recycling project has the potential to unite and empower every citizen. Within every action field/network within a society, an organisation will have a competitive advantage in recycling. Providing people and the planet are prioritised over profits. The organisation offers the strategic action field/community with a common good.

Part one: step two envisioned the possible collaboration opportunities that could empower citizens with subjective well-being. To prevent repetition, I will forgo the literary details. The graphic is provided in the chapter notes.

The final framework Iain and I designed before dropping the idea of A-LEAF as a social enterprise in 2023 was the House of Well-being. The House of Well-being is based on the Health and Social Care Alliance Scotland’s House of Care. The graphic I used, however, looks more like the US House of Representatives. That was either due to studying American-Russian international relations or watching too many American political TV shows.     The House of Well-being/ A-LEAF framework for the well-being circular economy is as follows: The stairs metaphorically represent the circular economy but in reverse. The framework focuses on recycling as a monetary policy for community wealth building. From left to right, the four pillars are: (1) Build an online platform for keeping goods in the community longer, preventing goods within their life cycle from ending in landfills. (2) Within the community, there should be a focus on reducing polyester clothing for gym wear. Polyester, when washed, produces microplastics. The effects microplastics have on the environment are well known. The impact of microplastics on human life requires further investigation. (3)  The action field/network should prioritise action research with all stakeholders in the field/community. This would reduce the requirement for lived experience boards, which, from my experience, reduces well-being. (4) Network for the UN SDGs goals.  Every node/organisation with a network operating within the field should focus on achieving one or more of the seventeen sustainable development goals. The field the framework proposes is more robust than anything currently in place in Scotland. The nodes within the fields work towards the same strategy on a page (SOAP). Each field, of which there could be numerous in a geographical location, could adapt its SOAP to achieve the outcome of the field while working towards meeting the UN SDGs. The SOAP’s key performance and business growth indicators, designed to achieve the SDGs, can then be linked to the National Performance Framework. Directly connecting the strategic action fields back to the Scottish Government’s social policy agenda and simultaneously creating a database of community assets.  Implementing the A-LEAF framework would create a person-centred well-being economy.

societal triangle

A-LEAF started with the idea that citizenship well-being is dependent on three areas. 1. Professional identity—without a sense of belonging and meaningful employment, well-being will remain low. 2. legislation. Government policy must support citizens in working on their own well-being. 3. Social norms of the community must support collaboration between citizens to develop a strong community.

Well-being circular economy.

To achieve the societal triangle, it was clear that the projects’ funding must be commercial. Removing community waste, upscaling, reusing, or recycling the community would generate a community wealth fund. Other commercial social enterprises could use the funds to develop projects that would empower citizen in their local community.

The circular image of well-being represents what Ian and I thought provided the best opportunities. Other projects are encouraged.

House of well-being

The House of Well-being was our last attempt to convince the funding bodies that A-LEAF, along with our Scottish government colleagues, had a solid plan for developing a well-being circular economy.

Emplyment: paid and unpaid

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The definition of employment I am applying in this chapter is any work-related activity requested on behalf of an organisation. For example, I am including paid employment – Woolworths PLC and Sainsbury’s PLC. I also include unpaid employment – Macmillan Cancer Support, support worker, People Powered Health and Wellbeing reference group member and board, Scottish Government community eye care review, and the Scottish Government Human Rights lived experience board.

I commenced employment at seventeen while still attending Whitehill Secondary School. I have a confession: I initially worked for Big W – a retail chain owned by King Fisher Group. Multiple years after King-Fisher was liquidated, I wrote a paper on how dysfunctional King-Fisher’s board was. The paper was written for ‘Ethics, Governance, and Responsible Leadership – a module required for my MSc. Knowing in 2024 what I know about the King Fisher board, my only surprise is that my employment lasted nine years, not nine days.   

For readers unaware, Big W retail stores were the idea that customers could purchase products ranging from pick-n-mix to alcohol and from DVDs/ CDs to 40-inch LCD TVs. As a concept, Big W was an exciting idea. In the early 2000s, before video on demand – Amazon Prime, Netflix, and others- the idea of purchasing your weekend movie entertainment, alcoholic beverages, and perhaps even an LCD TV, even today, sounded convenient. The business idea for Big W, even today, sounds viable. Tesco, Sainsbury’s, and Walmart-Asda still apply framework variations in 2024. Big W’s problem was not that it was ahead of its time. Big W’s problem was that no one had ever completed a risk assessment. Or perhaps the risk assessment completed by Big W’s board put profit before people and the planet. In this case, liquidation should have been foreseen.  

The locality of the Big W store I had paid employment in was Glasgow Forge Retail Park. Glasgow Forge Retail Park and my birth area of Haghill have something in common. They both have public and private transport access routes. However, more worrying, according to the Scottish Index of Multiple Deprivation, Camlachie – an area of Glasgow in Scotland located in the East End of the city, between Dennistoun to the north and Bridgeton to the south – and Haghill are deprived of health, education, employment, and housing. Readers should not be surprised that Multiple Deprivation equals high crime. Here is why I believe no risk assessment was ever completed- the geographical size of Big W was too large, and the security personnel too slim to prevent mass shrinkage. For unaware readers, shrinkage is the loss of units/products via shoplifting internally or by the general public. The second reason I believe there was never a risk assessment completed was that most employees – at least weekends and evenings were directly hired from Whitehill and Bannerman High Schools. The UK army cannot recruit in Schools. Why could the Kingfisher Group? Even the recruitment process sounds unethical. My point, however, is this. School, college, and university students are not the correct employees to prevent mass shrinkage. Even a UK army regiment could not have prevented shrinkage in Big W.  

The collapse of Big W and, eventually, Woolworths was, in hindsight, foreseen.  From an egotistical – selfish viewpoint, I am glad the store remained operating until I completed my BSc in Multimedia. This chapter is titled employment: paid and unpaid. Therefore, the remainder of the chapter focuses on how employment affects my professional identity. Professional identity, or the lack of one, affects my well-being. If the reader thinks about it, I am sure it is the same for every reader. However, before getting to professional identity, I have to say something about personal identity. After completing my BSc in multimedia, two colleagues from Woolworths asked if I could help promote their band promotion company, GnG Promotions.

GnG Promotion was shorthand for Grant and Garry Promotions – much thought went into the name. Garry dropped from the promotion early on. Grant and I did go on to promote some successful nights in the Soundhaus, 13th Note, and Classic Grand in Glasgow. As part of GnG promotions, I worked alongside bands such as the Black Arrows, The Toi, and Day Break, to name a few. A memorable time was had thanks to Woolworths. Thank you for that. The good times did roll in those short three years. I want to thank all the bands and venues I had the opportunity to work with. Band promoting for me was a hobby – an expensive one at that. My personal identity and social capital were increased due to it. However, I never saw it as anything more.  Therefore, I could let it go without any loss of well-being.        

I was employed with Big W – Woolworths between 28 September 2000 and 9 Jan 2009. I received the equivalent of a year’s wages when Woolworths closed. Therefore, I was happy to be sent from position to position by the job centre-plus, as   I was using my existing skills and learning new skills.

Subjectively, the UK HM Revenue and Customs (HMRC) has its priorities discombobulated. Twelve months after no paid employment, I had two unpaid employments, one with Macmillan Cancer Support and another as an administrative assistant at Cross-Reach. Despite my economic contributions – travelling and saving Cross-Reach capital, I worked for free. Remploy, in 2010, partnered with Job Centre Plus, took the decision that I was required to contribute to the gross domestic product by paying taxes. Objectively, I understand – what gets measured gets done. Despite having a BSc in multimedia and working as an events coordinator for three years. Paid employment with Sainsbury’s loomed. In 2010, I had no intention of remaining in paid employment with Sainsbury’s longer than necessary. Somehow, the necessity has developed into thirteen years.      

I have the same employment in 2024 as in 2000—twenty-four years serving the public, replenishing shelves, and operating hot food counters. The repetitiveness itself lowers well-being.

Removing myself from the shackles of the repetitiveness after four years, without a doubt, prevented a mental breakdown. In 2014, returning to higher education to study politics, philosophy, and economics was my best move and simultaneously the worst. As the reader knows, I received my BA (Hons) PPE in 2019. My lack of personal and professional identity has nothing and everything to do with that degree. All be it, indirectly.

What has transpired between 2014 and 2024 has my well-being swinging on a pendulum.  2014, I joined The Health and Social Care Alliance Scotland (The Alliance). Knowing that I required lived experience – work experience and academic experience – to find paid work after completing my BA (Hons) membership at The Alliance was the logical choice. Membership of The Alliance as someone with long-term conditions costs me nothing but opportunity cost – time. Could my time have been better spent? Today, would my well-being be greater without The Alliance membership?

If you work hard, you will become successful, and once you become successful, you’ll be happy – Says Shawn Achor in The Happiness Advantage. I have worked hard for ten years but have not felt successful. I feel unpropitious. Unpropitious or perhaps Inauspicious: I believe society prevents my happiness/well-being by refusing to accept the system change required for a well-being/ circular economy. The social norms of society are not designed with childhood medulloblastoma survivors with a BA (Hons) and MSc in mind.

Childhood medulloblastoma survivors with a BA (Hons) and MSc are not supposed to have an interest in social policy. Challenging the top-down approach to governance is forbidding. Ironically, without membership in The Alliance, I wouldn’t feel so strongly that a system change is required.  

I interviewed numerous Alliance staff members for my MSc dissertation. A staff member who now works for the Scottish Government told me The Alliance’s remit is to strengthen the Scottish Government’s social policy, not contest the social policy. What is ironic is that by default, The Alliance is part of the system of governance, and The Alliance staff are civil servants by proxy.   

My first unpaid role with The Alliance was on the People Power Health and Well-being reference group. The Alliance set up the reference group. However, the reference group was funded directly by the Scottish Government. The remit of the reference group was to advise on the framework for the Public Bodies (Joint Working) (Scotland) Act 2014. My role as a person with lived experience or a person with long-term conditions was to attend meetings and provide professionals with insight into the daily lives of someone with lived experience.

As part of The People Powered Health and Well-being reference group, I did my first non-academic research, asking: Does engagement and inclusion promote well-being and recovery, and if so, how? The rousing thing was that that research was not part of the original plan. The original plan was for professionals to observe the reference group members and produce a subjective qualitative report. I could not be prouder that The People Powered Health and Well-being reference group members rejected that idea outright.

People with long-term conditions can do research, too. The reference group showed it. Now, society needs to acknowledge it.

Thank you to Lisa Curtice, the project lead on the People Power Health and Well-being project. I am not sure that without Lisa’s contacts at Strathclyde University, I would have had the opportunity to complete my first non-academic research. Readers can still watch the People Power Health and Well-being project’s Vimeo videos. Vimeo.com/pphw.

Interestingly, while I was in the process of being guided in research methodology by Dr Ailsa Stewart, a lecturer in social work and social policy at Strathclyde University, my Open University tutor worked in the same department. I cannot remember the name of the tutor I had for ‘Introducing the Social Sciences’. I cross-referenced Dr Ailsa Stewart’s published papers to see if I recognised any co-authors.  The name of the tutor still evades me. However, I recognised one name. Gillian Macintyre – Gillian also added to guide my knowledge of research methodology. It is fitting Gillian also receives a mention.   

I only mention my Open University tutor because, by the time I was given the opportunity to collaborate with the Scottish Government again, I was either studying DD203 Power, Dissent, and Equality or A222 Exploring Philosophy. The project I had the opportunity to be part of was the Scottish Government’s community eye care review. I have a mention in the Annex A of the community eye service review report. To date, that mention is my claim to fame.

As for my role, my fellow stakeholders and I met monthly to discuss current services and hear from various partners on potential developments in the community eye care services.

In 2017, my well-being was at a high point. I studied topics I enjoyed and collaborated with fellow stakeholders on social policy. However, I have not replicated the feelings of personal and professional identity that I had in 2017. I was a PPE student working in collaboration with fellow stakeholders. A career in research and policy is still my preferred area of employment today.  Given that my job in 2024 is so divergent from my personal and professional life in 2017, my well-being is low.

My final Open University module was DD313, International Relations: Continuity and Change in Global Politics. The module is not so important; what is essential is the date—2019. I did not mention my four weeks volunteering with Global Vision International in Cape Town, South Africa when I commenced this chapter. South Africa was a personal development, not a professional development. Also, I don’t see my time in Cape Town as unpaid employment in the same way as I view the People Powered Health and Well-being reference group or the community eye care review. My time in Cape Town shaped me and profoundly affected my vision, values, and principles; more on that in the next chapter – Social Enterprises: A-LEAF.

To finish this chapter, I must finish at a low point. As of March 2024, my well-being is low; I am frustrated and annoyed that I spent a year between 2022 and 2023 doing unpaid work on the Scottish Government’s Human Rights lived experience board. My well-being is at the time of writing low because I don’t have the professional identity I had in 2017. The launch of the social enterprise – A-LEAF and a grounded understanding of Human Rights issues in Scotland was intended to recreate the subjective well-being that my perceived personal and professional identity provided me in 2017.

2014, I gave up my full-time position with Sainsbury’s because my well-being was low. I needed something more than a job in retail. Everything I did between 2014 and 2024 was designed to improve myself and the community. The outcome was not what I envisioned. Despite my frustration and annoyance, I don’t regret the past ten years. However, I am low on hope for a better tomorrow for myself and the wider community.                   

My Medical History

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What makes a person the same person over time? A British philosopher, Nigel Warburton, introduced me to personal identity via the “Ship of Theseus” thought experiment.

Now, let’s embark on a journey of contemplation. Imagine Theseus’s ship, lost at sea; its hull is the only remnant. A new vessel is painstakingly crafted from the salvaged wood, bearing the same name as the original. But is this new ship truly the same as the old one? I invite you to delve into this question, explore how you perceive personal identity in this context, and consider whether you can draw any parallels to your life experiences.

As we grapple with the ship’s enigma, let’s delve into a more profound question: Can a person remain the same over time? This is not just an abstract philosophical puzzle; it’s a question that each of us, in our unique ways, has to confront. Reflecting on my journey, I arrive at a resolute conclusion: I am the same person today as the four-year-old child who courageously faced a Medulloblastoma, a brain tumour. This personal insight, born from the depths of my experiences, underscores the profound depth and complexity of individual identity.

In philosophy, ‘personal identity’ refers to what makes a person the same person over time. It’s important to note that ‘personal identity’ is distinct from political ‘identity’ (which encompasses cultural and ethnic origins, sexual preferences, and so on). In my writing, I use ‘personal identity’ and ‘professional identity’ interchangeably in chapter five-Social Enterprise. Both these aspects, my personal and professional identity, contribute to defining the person I am, including the child diagnosed with Medulloblastoma in 1987. 

I cannot say with certainty. Medical records were received after the time of writing. However, a small percentage of medulloblastomas related to gene changes can be passed down through families (Cancer.gov). I am 90 per cent sure my medulloblastoma was genetic. The person I am today was preconditioned before birth.

Philosophy, however, is not written with childhood medulloblastoma survivors in mind. Therefore, when philosophers argue their conclusions supported by true premises, they do so based on undeniably correct objectivity. My argument here is subjective, remaining so until the completion of chapter six: Do I consider myself disabled today? In philosophical terminology, my conclusion, my subjective conclusion, is that I am the same person through time because of a traumatic event—a childhood medulloblastoma diagnosis.    

Hopefully, the reader is beginning to grasp who I am. Ponder this question: Can the person I am today with, 36 years of navigating a society, a society based on institutional objectivity, have subjective happiness/ well-being? Shawn Achor, writing in The Happiness Advantage, points out that ‘the most enjoyable part of an activity is the anticipation’. What if the anticipation of a career change, system change, or recognition never comes? How is happiness/well-being affected?      

The remainder of this chapter focuses on my childhood medulloblastoma diagnosis and the side effects of chemotherapy, radiotherapy, and stroke. As mentioned above, I have not received my medical records at the time of writing. I write this chapter from memory using published documentation to provide legitimacy to my degrading memory. 

In the UK, 52 children are diagnosed with medulloblastoma each year. In 1987, I was unlucky enough to be one of the 52. Medulloblastoma is the most common childhood malignant (high-grade) children’s brain tumour.  Malignant means the tumour is cancerous. A high-grade malignant medulloblastoma means it is a miracle I am here to write this book 36 years after the diagnosis.

On social media, I was asked what type and sub-type of medulloblastoma I had. Honestly, that information evades me. Once I receive my medical history, I shall insert that information into the chapter notes.

As a child, my favourite cartoon was ‘He-Man and the Masters of the Universe’. I had all of the figures, including Orko. Orko is the comedic character who comes across as a clumsy oaf. The silly little sorcerer provided many laugh-out-loud moments for the three-year-old I was. On reflection, when my parents started to call me Orko. Alarm bells should have gone off. No parent wants to call their child a clumsy oaf. No parent wants to find out their child has a medulloblastoma. The reality is that children who become clumsy oafs over a short period could have a brain tumour. If you see this change in your child, I urge readers to go to the doctor and demand a referral for a scan.

Cancer Research UK lists the following as symptoms of a medulloblastoma: headaches, sickness, double vision, standing or sitting unsupported, loss of appetite, and behavioural changes.

Double vision and standing or sitting unsupported. I dub this Orko syndrome. If your child has Orko Syndrome, get to the doctor for a referral for a scan, and don’t take no for an answer. I don’t think I ever lost my appetite. My issue was that I could not keep any food down concerning the behavioural changes. I spent most of my pre-diagnosis days in a dark room to stop the headaches. That is a massive behavioural change for a child who just turned four.    

Above, I mentioned that only 52 children in the UK will be diagnosed with a medulloblastoma each year. Therefore, at least today, I hold no animosity towards the general practitioners (GPs) who misdiagnosed my condition as jealousy of my younger brother and play-acting. Fiercely, I condemn the GPs, who in their right mind think a four-year-old is voluntarily making himself vomit to the point of death out of jealousy of a younger sibling? The thought alone is outrageous. Outrageous, disgraceful, bordering on eccentric.

Eccentricity is supported by objectivity. Society supports institutional objectivity, and social norms reinforce it. Therefore, I cannot condemn GPs because they are part of a system of governance built on institutional objectivity. As a social science graduate, I am tasked with understanding society, not asking for a system change. Sorry, I cannot do that. At this point, the readers should understand I am the same person today, not because of the medulloblastoma. I am the same person today because of society’s inability to support adults who had brain tumours as children.  

Cognitive awareness of the months/years directly following my medulloblastoma diagnosis is absent. Perhaps it is for the best, as it allowed me to move past that experience quickly. By the time I was eighteen, I wanted nothing to do with my medulloblastoma diagnosis. That is getting ahead of the story. Not having my medical records on hand prevents me from providing you, the reader, with the technical details of my brain tumour. A friend on social media had a non-malignant brain tumour the size of a cream egg. Sorry, @Tumourkilller, my malignant brain tumour dwarfed your non-malignant brain tumour. I am a survivor. I have bragging rights. I am attempting to tell the reader that not having my medical records on hand is a blessing, making writing this chapter more authentic. I hope the authenticity I give the reader will be returned with legitimacy. 

Objectively, surviving a high-grade malignant medulloblastoma is more impressive than surviving a non-malignant brain tumour the size of a cream egg. That’s how an institutional system with objective evidence would view it. However, I am too altruistic and understand the importance of viewing the situation holistically to take that view. @Tumourkiller is authentically telling his story to empower himself and inform his viewers. Tumour killer (Ryan) deserves legitimacy. Legitimacy, I argue, provides the speaker with dignity.  What the GPs did, what society did, removed my parent’s dignity. Only 52 children are diagnosed with high-grade malignant medulloblastoma each year in the UK. I understand the objective view of the GP. I also understand that place and past dependency matter. The GP would have lacked the knowledge and understanding to diagnose a child with high-grade malignant medulloblastoma. Understand, yes; forgive, no. What the GP did was remove any legitimacy my parents had. Therefore removing their dignity. That objectively is a breach of human rights. My views on human rights in Scotland were covered in chapter one.

In 1987, I was diagnosed with high-grade malignant medulloblastoma—a childhood brain tumour.

“Medulloblastoma is likely to grow quickly and can spread to other areas of the brain and spinal cord. Around 30 out of 100 children (around 30%) have medulloblastoma that has spread when they are first diagnosed.”

(Cancer Research UK, n/a)

I was one of the 70 per cent of diagnoses where the cancer had not spread to other parts of my body—no secondary cancer – the name given to cancer that spreads. Additionally, to date no recurrence. I do not know the type of chemotherapy or dosages I received. I also don’t know anything about the radiotherapy I was given. I remember having to be held still in a mask attached to a table—readers who have watched The Man in the Iron Mask, like that, only shackled to a table with radiation being fired at me. Today, my spinal cord is shunted due to the radiotherapy. Though better to be a few inches shorter than biologically expected than dead.

I cannot be too sure about the side effects of the chemotherapy. Today, from what I know about neurodivergent individuals, I think my brain works similarly. However, that could be due to removing the tumour damaging surrounding parts of the brain, not the chemotherapy. I believe I had some form of learning disability in primary school caused by the chemotherapy. More realistically, however, is a sensory loss – hearing and sight were an issue as far back as the late 80s. I refused to acknowledge it. The education system, NHS, social workers, and even my parents failed to see it.

As far as the stroke is concerned, I have a slight speech impediment, cannot walk in a straight line, and have constant double vision. Today, I am considering asking for a symbol cane. To stop the double vision, I have to blind my left eye, and as I am sure you can imagine, walking with only one eye while not being able to walk in a straight line has its difficulties. A symbol cane would inform the public that I have sight issues.          

In the fictional case of Howie vs. Scotland, the judge had no choice but to find in my favour. Scotland failed Howie by not delivering on getting it right for every child (GIRFEC). Scotland could not protect my human rights—mainly rehabilitation and the right to live in the community. Scotland failed to transition Howie from GIRFEC to Getting It Right for Everyone (GIRFE).

My Book: Chapter One (re-writing)

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Chapter One: Why I don’t have a personal and professional identity.

The video above explains why I am re-writing my book. However, before doing so, I wanted to allow you to read what was written as a first draft of the chapters. See below for Chapter One.

Politics engulfs the life of every citizen on planet Earth. However, most Scottish citizens need to learn the difference between social policies devolved to the Scottish Parliament and those reserved for Westminster. Furthermore, most citizens have yet to care or have given up hope in both parliaments.

17 April 2007—the year the journey started. I don’t regret joining the SNP in 2007. My second undergraduate degree, MSc, volunteering with Globel Vision International, and numerous memberships with third-sector organisations are directly inherent to my SNP membership. However, SNP membership is the primary reason I lack a professional identity. I joined the SNP because I believed in 2007, which I think is true now. Scotland should be an independent country. However, over the past seventeen years, I have realised that independence is for nothing if citizens are not empowered. If citizens lack hope, communities become nothing more than industrial, capitalist ghost towns with the sole purpose of serving only shareholders, with no regard for stakeholders. Then why rock the boat?

2014 was the year I decided to return to education and find employment in social policy (see chapters three and four, respectively). I have ten years of experience in social policy, but I need help finding paid employment, which lowers my professional identity. In any other field of employment, ten years would demand legitimacy and respect. However, citizens who are experts by experience, including myself, are provided legitimacy only when the Scottish government wants to bring forward a new act of parliament or strengthen an act that has become outdated.  This process is unacceptable, unsustainable, and intolerable. The process of lived experience boards is a two-tier system—citizens who contribute to growth in society and citizens who are supported by growth in society. Note the oxymoron. Growth in the UK/Scottish economy has stalled. Cuts to vital services give that perception. Objectively, GDP growth has been steady. Steady growth results in budget cuts. Illogical?  Undebatable, budget cuts lower capacity and resources. I argue, therefore, that citizens cannot be supported in improving their well-being because the state lacks the capacity and resources (see Chapter Seven).  

Chapter four, Employment, outlines my contributions to lived experience boards since 2014. The pivot here is on two expected acts of the Scottish Government.  The Human Rights Integration (Scotland) Act 2026 and the Learning Disability, Autism, Neurodiversity (LDAN) (Scotland) Act 2026. The latter I have little experience. However, the LDAN bill is essential on a personal level for two reasons. Reason one: I am altruistic, more so than most citizens. I care greatly about the well-being of all citizens and how social policy correlates with citizenship well-being. The essential point is that evidence highlights that autistic citizens are more caring than neurotypical citizens. Additionally, autistic citizens talk more in statements. I am not suggesting I am autistic. However, I was diagnosed with a medulloblastoma – a cancerous brain tumour – at the age of four. A reasonable conclusion is that my brain is not neurotypical. Take this book for example. I am conveying my reasons for lacking a subjective well-being premium – I feel underemployed, undervalued, and not given the legitimacy I deserve. I have, however, chosen to convey a personal grievance through societal content, social policy, and the well-being of others. Furthermore, Chapters one to six are written in statements. I write in statements – as if my subjective opinion is a fact.

My opinions are not facts. What is a point other than an opinion that has been given legitimacy via an act of parliament or agreed upon as a social norm? My second reason for having a vested interest in the LDAN Bill/Act is that the Scottish Government will legitimise both the Human Rights and LDAN Act by 2026. But is legitimacy not subjective? What if both Acts fail to secure dignity for rights holders? What then? Because rights holders in question are some of the most vulnerable citizens in society. I strongly suggest that despite the legal guarantees set out in the Human Rights Integration (Scotland) Act 2026, the most vulnerable citizens don’t have civil liberties or the resources or capacity to set up a civil disobedience movement to gain their civil rights, better known as dignity.       

Article 1 of the Universal Declaration of Human Rights says:

“All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.”

Admirable sentiment but a work of fiction. In 2024, human beings are not born free and equal in dignity or rights. The Universal Declaration of Human Rights is a work of fictional political philosophy. In philosophy terminology, the premise of Article 1 is false. Philosophical essays start with a conclusion and attempt to prove the conclusion by demonstrating that each premise is correct. For example:

Socrates has two eyes.

Humans have two eyes.

Socrates has two feet.

Humans have two feet.

Socrates has two hands.

Humans have two hands.

Socrates must be human.

There is no evidence to prove Socrates was anything more than writings in Plato’s journals. Perhaps that is why the Open University teaches it to undergraduates. The maxim, however, is a matter of place and path dependency.  In Socrates’ time, the premises may have held. In contemporary Scotland, the assumption is as false as Article 1.

Despite my lack of enthusiasm for lived experience boards, I contribute to them for three reasons: 1. It keeps my skills ticking over. 2. I am networking for a purpose. 3. Peer-to-peer knowledge exchange can be a source of empowerment. When provided with the opportunity of sitting on the Scottish government’s human rights Lived experience board in 2022/23, I had to accept. However, I accepted because I wanted to listen and learn. If COVID-19 provided any valuable insight, the state failed the vulnerable rights holders not because of COVID-19 but because of an institutional design flaw. Chapter Five on the Social Enterprise/framework, Chapter Seven, discourse: What Society Missed, discusses possible mitigation methods.

Lived experience boards are designed to promote and develop acts of parliament or improve learning outcomes/frameworks. There is no debate. They achieve their desired outcome. Citizens/rights holders will have a subjective well-being premium for the board’s life cycle. The main reason for this subjective well-being premium is a sense of diversity, inclusion and belonging within the board. Rightsholders are placed on a pedestal, empowered by the belief of contributing to the government’s social policy. Concluding the board’s life cycle, however, the sense of belonging and empowerment has evaporated. Hope is replaced with anxiety. Altruism is replaced with egotistical thoughts. Thoughts like, was board membership the best opportunity cost? Can the board experience be used to find paid employment? The feeling of being back at the day job. The sense of being under-employed, under-valued, and unable to find a professional identity to satisfy a subjective void – the feeling of having zero legacies.

I dislike and admire lived experience boards equally, perhaps because I have too many expectations regarding my possible career prospects. Possibly, lived experience boards are a tool for achieving an outcome. Furthermore, citizens who are experts by experience are probably discarded as an afterthought on completion of the board, as citizens with lived experience were never endogenous to a system designed to produce an outcome. What gets measured gets done – that’s what they say in business schools. Well, I guess the well-being of rights holders is not measured.    

Readers, please don’t get the wrong idea. This chapter is not about any objective grievance relating to lived experience boards. What I have said is entirely subjective. However, a colleague who sat on the People Powered Health and Well-being reference group echoes my opinions (see chapter four). There is also academic evidence provided by ‘Cool Music: A Bottom-up ‘Music Intervention for Hard-to-reach Young People in Scotland’, which shows short-term projects can result in well-being issues for staff and clients. To prevent misreading, I believe lived experience boards must be phased out and replaced by community councils and reference groups taking a more active role in community and citizen empowerment. My view that lived experience boards should be phased out is not a grievance. It is an opinion. It is far from a social norm. And my views were dismissed by the Scottish government’s social enterprise funding body.

What I write now will split readers’ opinions. However, it is too important an issue for it to go undocumented. Like rights holders—citizens of Scotland—who don’t have the resources and capacity to challenge the inequalities that prohibit dignity, the Scottish Government doesn’t have the resources or capacity to provide every citizen in Scotland with human rights/dignity.  The objective evidence is clear and covered in detail in chapter seven. Subjectively, since 2014, I have worked directly and indirectly with the Scottish Government in some capacity. For the seven years before 2014, I was an active foot soldier for the SNP. I even went to vetting for candidacy for MSP. I am an idle supporter today because I became burnt out attempting to challenge/change the top-down institutional system from within a political system, a cornerstone of the institutional system itself. The focus of any society is on GDP growth. Goal eight of the UN SDGs is Decent Work and Economic Growth. GDP growth is an international aspiration. So economic growth should be. However, as Chapter Four shows, my paid employment lowers my subjective well-being/ dignity because I am unhappy with my professional identity.   Membership of the SNP provided false hope. I believed my SNP colleagues and I could bring about a fairer, healthier Scotland. Perhaps evidence exists to show inequality has reduced in Scotland since 2007. However, it has not been reduced to the point where the most vulnerable rights holders feel empowered and have dignity. Do I think the Human Rights Integration (Scotland) Act 2026 will enable rights holders and provide dignity for every Scottish citizen?  NO. No, I do not.    

        

Thank you for reading and watching the video. If you have any questions, ask them in the comments box.

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Human Rights Integration (Scotland) Act 2026: Not workable without a social contract?

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Disclaimer. This blog post you are about to read is subjectively motivated. However, the intent is not to criticise the integration of the United Unitions Convention into Scottish Law. The blog intends to empower the reader with the knowledge required to understand why I believe the Human Rights Integration (Scotland) Act 2026 will be dead on arrival.

For clarity, I have no desire to see the Human Rights Integration (Scotland) Act 2026 fail. Upon completing my master’s in social Innovation, I attempted to set up a social enterprise to empower local communities and citizens by supporting and recommending improvements to the Scottish government’s social policy. I joined the Scottish government’s Human Rights Integration Lived Experience board to achieve my social enterprise’s outcome. The objective was to learn from citizens how best to empower citizens in local communities. On reflection, that objective was achieved. Why do I believe the Human Rights Integration (Scotland) Act 2026 will be dead on arrival? Firstly, I think the framework I designed to achieve A-LEAF’s outcome supports the Scottish government’s Human Rights Agenda. To be denied funding by the Scottish government’s social enterprise funders indicates departments are not communicating on a Human Rights agenda. To successfully implement the Human Rights Integration (Scotland) Act 2026, the Scottish government departments require a Human Rights inclusive communication policy; this policy must recognise the Scottish government lacks the capacity and resources to empower every citizen in Scotland with dignity. To provide dignity to every citizen in Scotland, there is a requirement to shift the Human Rights agenda from top-down to bottom-up- There is a requirement to support social enterprises that aim to be commercially sustainable whilst supporting the United Nations’ Sustainable Development Goals and the Scottish National Performance Framework.

The National Performance Framework states:

We [Scotland] have a thriving and innovative business, with quality jobs and fair work for everyone.

Scotland’s Natonal Perforance Framwork

As a Social Innovation graduate, I strongly suggest to the Scottish government that extensive work is required to achieve the standards for said performance.      

The Second reason I believe the Human Rights Integration (Scotland) Act 2026 will be dead on arrival is basic economics. Before completing my MSc in Social Innovation, I completed my second undergraduate degree in Politics, Philosophy, and economics. Therefore, I believe I have some legitimacy regarding my economic claims. The backlash to Scotland’s First Minsters Humza Yousaf’s announcement that council tax in Scotland will be frozen in Scotland in 2024 has been intensive. However, by applying a Human Rights approach, the question becomes, can Scotland afford not to have a council tax freeze? Not can Scotland’s councils afford a council tax freeze.

The limitations of Devolution, as it relates to short-run capitalism, dictate that a freeze in council tax results in a cut in public services. While this holds in the short term, it is my opinion that moving towards a well-being/circular economy which supports the principles of a shared economy could mitigate the cost-of-living crisis. In the long run, this could result in lower council tax as social enterprises could provide crucial services.      

For example, instead of charging Glasgow city residents £50 to pick up garden waste. Social Enterprises could pick up the waste for free and sell the biomass to companies looking into sustainable and renewable energy sources.

Sustainability is a goal for the national performance framework:

We [Scotland] have a globally competitive, entrepreneurial, inclusive, and sustainable economy.

SNPF

While the national performance framework provides keywords, it offers no hope. Scotland’s economy is not inclusive. Only 49.6 per cent of disabled people living in Scotland are in work. I am willing to bet it is not full-time work, which allows for the highest attainable standard of living. Scotland’s economy is not sustainable. Paying £50 for garden waste pick up when there is a cost-of-living crisis is anything but sustainable.

Scotland’s economy may be entrepreneurial. Scotland’s economy is not social entrepreneurial-friendly. If it was, the cost-of-living crises could be mitigated. Furthermore, because business tax is reserved for Westminster, the benefits from tax from any profit before people and planet business goes down south and does not stay in Scotland.

Given that Scotland’s economy is not social entrepreneurial-friendly, inclusive, or sustainable, can Scotland’s economy be competitive?  

The third reason why the Human Rights Integration (Scotland) Act 2026 will be dead on arrival is Scotland’s social enterprises are charities, not social enterprises. At least not the academic definition of a social enterprise. That is a significant issue that cannot be underestimated. I have volunteered in Scotland’s third sector since 2010. I fully support Scotland’s third sector. I am on record saying parts of Scotland’s third sector act as a second chamber to the Scottish government. Scotland has a strong third sector. Scotland does not need a more extensive state supporting more third-sector organisations. Scotland needs a robust social enterprise sector that reports to, answers and monitors the Scottish parliament. That is how we achieve a Human Rights Integration (Scotland) Act 2026 that is fit for purpose.

This brings me to the second part of the blog post. The social enterprise I tried to set up challenges the top-down social norm that exists in Scotland. There is too much of what the state can do for me and not enough of what I can do for my state. Or to put it another way.

Ask not what your country can do for you- ask what you can do for your country.

JFK, 1961

Scotland is not the USA. Scotland is, however, part of the UK, for worse or for better. In implementing the Human Rights Integration (Scotland) Act 2026, the Scottish government should remember the teachings of John Loke and Thomas Hobbes. Yes, citizens may need a government to run the state. Society in Scotland has come a long way since the English Civil War. Scotland requires a new social contract. Scotland requires a social contract that empowers social entrepreneurship. And social entrepreneurs must empower local communities.

Watch the attached video to learn more about A-LEAF and stay updated on my views on Scottish and UK politics.   

A-LEAF: should it say or go?

This video is not public on YouTube. If you do like this content, let me know, and I’ll see about updating my video and recording equipment.

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Human Rights (Scotland) Act [2026?]

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The human rights lived-experience board meeting, taking place on Monday 21 November, shall focus on what key performance indicators to measure, to inform that the human rights act is achieving the desired outcome. This blog post will ask the readers three questions, question one will ask the reader how well you feel human rights are protected in Scotland right now. Question two will ask the reader what you think is the most important human rights issue in Scotland today. Question three will ask the reader how hopeful they are feeling that the new human rights bill will be successful in realising human rights for people in Scotland. After each question, there shall be a short discussion about the contemporary issues directly impacting the question.

What is the Human Rights (Scotland) act?

For international readers and national readers that do keep up to date with politics or the third sector, Human Rights (Scotland) Bill/Act is an act of the Scottish Parliament that will incorporate the UN Human Rights conventions into Scots law. Wait, it gets more interesting, the Scottish Government only has responsibility for devolved matters. Reserved matters are still the responsibility of the UK Government. What then does the devolved/reserved conflict as it relates to the power of Governments/Parliaments mean for the human rights of people living in Scotland? that is the question this blog will look to answer.       

How well do you feel human rights are protected in Scotland right now?

For international readers, this question and the two questions that follow will be hard or impossible to answer. While you- the international readers may have difficulties answering the questions, I would suggest that you continue reading. From an international relations lens, the Human Rights (Scotland) Bill/Act speaks volumes about the character of the Scottish Government/Parliament.

Turning attention to the question of how well you feel human rights are protected in Scotland right now. As a citizen of Scotland, I would conclude there is room for improvement. Poverty in Scotland 2021: Towards 2030 without poverty, tells you all you need to know about human rights violations in Scotland. While the case of Awaab Ishak, see here, is in England. Scotland’s housing situation is not much better. In Scotland today (2018)

2 per cent (51,000) of all households are overcrowded

19 per cent of homes have some level of urgent disrepair to a critical element and just 1 per cent had extensive disrepair

2 per cent (40,000) of homes (at the time of writing) do not meet the ‘Tolerable Standard  

0.7 per cent (18,000) have both condensation and some level of penetrating or rising dampness

(Cain, 2021, p. 212)

As the data above shows Scotland has to do much more to improve housing if the goal of the Scottish Government is to protect people living in Scotland from human rights violations.

What do you think is the most important human rights issue in Scotland today?

These questions that am putting to the readers are the questions the human rights lived experience board will answer on Monday. Therefore it is only fair to the reader, that the choices are made clear. Which options from the list are the most important human rights issue(s) in Scotland today?

  • Access to justice
  • Poverty
  • Disabled people’s rights
  • Women’s rights
  • Refugee and asylum seekers’ rights
  • Environmental rights
  • Older people’s rights
  • Children and young people’s rights
  • Something else
  • They’re all important- I can’t separate them all!

Readers may think, that because I referenced Poverty in Scotland 2021: towards 2030 without poverty. That I would say poverty is the most important human rights issue in Scotland today. If this is your thinking, I can inform you, you are completely incorrect. All choices above are equally important. To try to focus on one or two of the choices above without seeing the holistic picture is, hazardous to health.  

I have a seat on the Human Rights (Scotland) Bill lived-experience board because I am a member of the Health and Social Care Alliance Scotland. The third-sector organisations in Scotland know that a holistic co-produced model is required to achieve human rights in Scotland for all citizens.

What would human rights for all citizens look like? Given the political structure of Scottish society, only the Scottish Government and parliament can answer that question. In the decision section, I try and help the Scottish Government make the correct choice.     

How hopeful are you feeling that the new human rights bill will be successful in realising human rights for people in Scotland?

I recognise that this blog has not provided the reader with enough information to come to a balanced conclusion. I can, however, inform the reader that I am not hopeful, am probably more sceptical. Why sceptical you may ask. I said above that from an international relations lens, the human rights bill makes Scotland compliant with international policy. Therefore Scotland becomes viewed as open and outward-looking. Scotland should be viewed in this light. Scotland is a fantastic country with vast potential. With that said, If Scotland continues with the top-down approach to government, in which human rights are focused on access to justice and not on well-being and dignity then I see no outcome where the new human rights bill will be successful in realising human rights for people in Scotland.           

Discussion

Readers may or may not know of my background. If you do not, I was diagnosed with a brain tumour at the age of four. see the home page for more information. I have over ten years of experience in the third sector, I also have two undergraduate and one MSc degree. The reader must understand I conclude that the human rights (Scotland) bill will not have the outcome desired, based on 34 years of living with the side effects of a childhood brain tumour, 13 years as a member of the political party that governs Scotland, 10 years volunteering in the third sector- which includes Scottish government boards, and, three trimesters completing a masters degree in Social Innovation.

I would like to think my opinion carries some legitimacy. Yes am cynical, however, I hope am proven incorrect. I shall not hold my breath. The reason I am so pessimistic about the outcome is I believe the funding model for the third sector is unsustainable. Once the Human Rights (Scotland) Bill becomes the Human Rights (Scotland) Act [2026?] a lot of the burden is going to land on the table, not of civil servants but on the table of third-sector organisations. I have said this before the third sector in Scotland, at least third-sector organisations that are directly funded by the Scottish Government are civil servants by proxy. I believe these proxy civil servants act as a second chamber to the Scottish Parliament, and I would not change this framework. For the Human Rights (Scotland) Act [2026?] to have the desired outcome, there is a requirement to think outside the box. Bring forward the fourth sector.  

So there is no ambiguity, In Scottish policy farmwork and academia, there is no fourth sector.  Social Enterprise in practice and theory is defined as the third sector. Nicholls (2010) makes two observations about Social enterprises. (1) there is no definitive consensus about what the term means (2) the research agenda for the field is not yet clearly defined. Two points I want to make. The first point is academia and Scottish policy are wrong, Social enterprises are not operating in the third sector. The second point is Nicholls is also completely incorrect. Angela Constance when Cabinet Secretary for Communities, Social Security and Equalities has a foreword in Scotland’s Social Enterprise Strategy which makes direct reference to Robert Owen and New Lanark. My argument is simple New Lanark is the definitive consensus of what a social enterprise is. And, research agenda was set between 1785-1968. For readers that do not know the history of New Lanark click on the link here.  

I can hear the angry neo-liberal supporters, that’s in past. That is not how we do things in the contemporary UK, we like capitalism. Am sure Robert Owen would have considered himself a capitalist. It is said The Wealth Of Nations is simply the best book on political economy ever written (Butler, 2010, p.viii). The contemporary UK could have looked so different if Robert Owen had written The Wealth Of Citizens.

If readers require a more contemporary view of what a social enterprise is read The Social Entrepreneur: Making Communities work by Andrew Mawson. I’ll go on record and say Mawson is the only lord I would consider supporting based solely on the book. What though do Owen and Mawson have in common? They both understand the importance of stakeholdership. Ever since completing my MSc dissertation on the question: ‘why is there a subjective well-being premium in voluntary sector employment?’ I have become convinced that a stakeholdership model must Incorporate Rosabeth Moss Kanter’s thinking on power and powerlessness in the workplace. Figures 1 and 2 summaries Kanter’s thinking.

Figures 1 and 2 copied from my dissertation

Kanter’s argument is that when the factor is high employees have power or subjective well-being. My argument is when that when power is in the hand of employees that work for social enterprises. That power can be extended into the communities the social enterprise operates.  

Conclusion

The purpose of this blog is to inform the reader of the process of the Human Rights Bill/Act. This bill has not yet reached the parliamentary stage. Therefore it is impossible to know how members of the Scottish Parliament (MSPs) will react to the bill at the first reading. If MSPs react in the same way as me, then expect a lively debate and a lot of amendments. Note debate and a lot of amendments are not to be discouraged. Debate and amendments are a sign of power. As I said above we cannot afford the Human rights bill to be empowered from the top down. Yes, we have the human rights lived experience board. My concern is what happens to the people on the lived experience board after the Scottish government decides it no longer needs the board. I say to the reader, the Scottish Government, and, The Human Rights Consortium Scotland I effusively welcome lived experienced boards. I add, however, lived experienced boards must be more than short-term talking shops.

I said above that my dissertation answered the question ‘why is there a subjective well-being premium in third-sector employment?’. My conclusion to that question is important for how social policy transitions from the third sector to the fourth sector. My conclusion to my dissertation question was; yes, there is a subjective well-being premium in third-sector employment but only when employment is sustainable and achieves an external improvement. For example, employees of the Scottish Human Rights Consortium have a well-being premium/power because their employment provides citizens of Scotland with human rights. Here is the catch well-being premium/power is provided by the Scottish Government or the city council, as it is these institutions which enable change via innovative policy change. I fundamentally believe there is a need for third-sector organisations that act as the second chamber of the Scottish Parliament. Perhaps a sounding board for the Scottish Government is a better way to look at it. I take the view though that the third sector is not sustainable. Therefore society must move toward the social enterprise fourth sector model. The Fourth Sector model is the only model that will provide subjective well-being to every employee in the sector while providing business growth indicators (BGI’s) and Key performance indicators (KIPs) that will monitor human rights from a well-being dignity lens and not access to justice lens.

Recommendations

I was planning to go into some detail on my social enterprise’s business model. How it focuses on the well-being economy while encapsulating the well-being economy in side the circular economy.  My social enterprise will use BGI’s that are focused on corporate social responsibility and use KIPs that are directly linked to The UN Sustainable Development Goals. I feel, however, that splitting the more technical aspects into another blog or support document may be more useful to the reader.    

I am hoping to have a zoom meeting in February/March regarding my social enterprise. I do recommend reader join that meeting. Details to follow.  

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Poverty In Scotland 21/22 & Human Rights (Scotland) Bill/Act

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Humanitarian interventions are a state practice: only the state (or a group of states) can conduct legitimate humanitarian interventions (Bell, 2014, p.297). I argue in this blog post, that Scotland’s poverty levels are a humanitarian issue. I call on the UK Government as the legitimate leader of the state, to take the steps necessary to reduce the poverty levels in Scotland.

Unlike preceding blog posts, this blog post takes a more academic style. The reason for the academic tone is to give the argument legitimacy. I am not suggesting non-academic posts lack legitimacy. I am suggesting the UK state has forgotten the role of the state in the social contract. A simple definition of the social contract is the relationship between the state and the citizens of the state. I claim herein if the UK state desires to be seen as legitimate then the UK state must focus social policy on merit goods.  

Merit Goods are goods that society believes should be widely consumed or universally accessible (Mackintosh and Meads, 2010 .p393). I claim in this blog post the Merit Goods that society supports are Human Rights. I strongly recommend to the UK state that failure to protect citizens’ human rights will result in the removal of any legitimacy the government still has.

The JRF poverty in Scotland report (Cebula et al…, 2022) found

There was an overwhelming consensus among people in Scotland that organisations and governments were not doing enough to tackle the cost-of-living crises… with 92% of respondents thinking the UK government is NOT doing enough.

I note the sample size of 4,196 is not a complete census. However, I argue that 92% of 4,196 is significant ground to suggest the UK state has lost the legitimacy to govern the people of Scotland.

The blame is not isolated at the door of the UK State, however, 85 % of the 4,196 people interviewed for the JRF report think the Scottish Government is not doing enough.

Two things the reader should note: 1. The Scottish government has a fixed budget. 2. The humanitarian crisis in Scotland was the making of the UK state. As a state, only the UK state has the power of Humanitarian intervention. 

The Quantitative data

The quantitative data provided by Poverty In Scotland 2022 and Poverty in Scotland 2021 casts questions over The Scottish Governments ability to drive home the outcomes which the Human rights (Scotland) Bill/Act are mandated to achieve. H Mckendrick and C Treanor (2021, p.105) highlight only 35 % of households from Scotland’s 10 % most deprived areas report they are ‘managing well financially.

According to Cebula et al (2022), p,21  82% of adults living in 10 % of the most deprived areas in Scotland report the cost of living crisis is having a negative effect on their mental health.

Note this is my reading of the data. 

The findings from JRF Poverty in Scotland (Cebula et al, 2022, p, 13) show one in four 26% of families with children have cut back on things their child needs, such as food or childcare.

I draw from the data presented in poverty in Scotland 2021 and 2022, that the situation citizens of Scotland find themselves in directly affects mental well-being. Which I argue is directly linked to the right to health.

Given the data, I have a hand I would like the reader to consider three things.

  1. There is a direct negative to public health caused by UK government policy. As a result, the government is not fit to lead.
  2. Because of the UK Government’s miss management of Merit Goods/social policy. The Scottish Government finds itself in a position where incorporating, getting it right for every child (GRFEC) and the UN conventions on Human Rights onto Scots law has become more challenging.  
  3. Under international law, only the UK Government as a state governor can declare the need for humanitarian intervention to tackle the cost of living crisis.                  

A lack of financial security is anxiety-inducing at the best of times but in a time of dramatically rising costs, it makes it nigh-on impossible for families to cope.         

The Qualitative Data

If you know me, you will know I am not a fan of quantitative data. I believe quantitative data is important for identifying trends. However, I also believe quantitative data cannot provide the same background as qualitative data as to where the data comes from. Therefore, having qualitative data included in Poverty in Scotland 2022 gives the data a human story to support the data. In this section, I will reproduce quotes from Poverty in Scotland 2022 whilst providing some wider content.

Grace from Glasgow says:

I’ve had to reduce food intake, we make one meal for everyone. You take what you need and no more. We cannot waste one drop. I check the bin, and plates to make sure no one is leaving any food.

JRF Poverty In Scotland

Under Article 11 of the International Covenant on Economic, Social and Cultural Rights-ICESCR, the right to an adequate standard of living includes the provision of adequate housing, food and water. I have no direct understanding of Grace’s living standards. However, if they are below ICESCR standards then the UK is in breach of Human Rights. I put it to the reader that the UK Government has no legitimacy if this is indeed the case.

Concerning the Human Rights (Scotland ) bill. Once incorporated into Scots law via an Act of the Scottish parliament. The Scottish Government becomes directly responsible for overseeing Grace’s Human Rights. However, the Scottish Parliament may lack the fiscal and policy power to do so.

Laura also from Glasgow Says:

My 14-year-old is growing and hungry all the time. We cannot afford the extra food so we have to bulk up his portions so my other children get less.

JRF Poverty In Scotland

Not only is this in breach of the ICESCR it is a failure of GIRFEC. I would recommend that a Scottish Government minister contact JRF regarding these quotes at the earliest convenience.

The above two quotes have called on both governments UK and Scottish to take action. Alex from Fife takes a different view. Alex’s intervention points out:

I feel like the support is completely unsustainable, how are these random handouts going to help in the long term?        

International Covenant on Civil and Political Rights (ICCPR)

Above I looked at how social and cultural rights have become infringed upon as a direct result of the cost of living crisis. We can see this from JRF findings:

We have seen that the isolation caused by the covid-19 pandemic has affected families and this cost of living crisis is having a similar impact. Families are cutting back on things that isolate both adults and children.

JRF Poverty In Scotland 2022

Angela O’Haggan said in the introduction to Poverty in Scotland 2021

Covid-19 has meant that 2020 delivered thousands of additional deaths…intensified social isolation and mental ill health, personal and community poverty, and economic and social instability and insecurity.      

O’Hagan, 2021

The UK is on an alarming downwards slope. I shall not go into what this means for GDP and inequality. I would recommend readers, read ‘The Spirit Level’ and ‘The Inner Level’ by Richard Wilkinson & Kate Pickett and watch what Mervyn King had to say here.

On the International Covenant on Economic, Social and Cultural Rights-ICESCR the UK is failing. There is no debate the UK is failing in Social and Cultural rights. It is a Humanitarian issue, which requires Humanitarian interventions from the UK state. The Scottish Government is powerless under international law to act.

Professor Alan Miller the Scottish Government’s advisor on Human Rights suggests the UK is doing better on International Covenant on Civil and Political Rights (ICCPR). Is the UK doing better on ICCPR? ICCPR gives citizens the right:

  • Freedom from torture and other cruel, inhuman or degrading treatment or punishment.
  • Fair trial rights.
  • Freedom of thought, religion and expression.
  • Privacy, home and family life.
  • Equality and non-discrimination.

I do not know about the reader but it seems to me that from the qualitative evidence, provided by JRF’s Poverty In Scotland 2021 that families across Scotland are facing cruel, inhuman or degrading treatment or punishment.

I remind the reader of what Grace from Glasgow said:

I’ve had to reduce food intake, we make one meal for everyone. You take what you need and no more. We cannot waste one drop. I check the bin, and plates to make sure no one is leaving any food.

Grace: JRF, 2021.

To me, this sounds like inhuman treatment. I once again call on the UK Government to see this cost of living crisis as a Humanitarian crisis and ask once again for Humanitarian interventions.  

Discussion

I have identified in this blog post, that the Scottish Government is almost powerless to act under international law. Yes, JRF’s report did recommend the Scottish Government do more with the powers available. Where the Scottish Government do not have the power to act. the UK Government does. However, The UK Government will not. Instead, the Government will use political ideology to try and reduce debt.  

Mervyn King says it live on BBC politics. The citizens of the UK who are going to pay higher taxes to reduce UK debt are the citizens that are already living on borderline poverty. This is a Humanitarian crisis. What is required is Humanitarian interventions. Citizens of the UK don’t care about the borrowing rate at which the UK borrows money. What citizens of the UK care about is their Human Rights.

Human Rights. Can the Scottish Government afford to push on with a Human Rights bill at a time of crisis?  

One of my colleagues from The Scottish Government’s lived experience Human Rights Board pointed out that a generation of young people has only ever known “CRISIS”. For me, it is not a case if the Scottish Government can afford a Human Rights (Scotland) Act. It is a case of can the Scottish Government afford NOT to have a Human Rights (Scotland) Act. Scotland is not a State under International Law. Scotland is a proud nation. Despite the failures of the UK Government, Scotland will remain a proud nation. A nation that stands up for Human Rights.             

Conclusion

I wrote this blog for numerous reasons. The main one, I wanted to reflect on what I have achieved over 2022. A little cliffhanger, I never got my Social Enterprise registered before writing this blog. This is why I did not include a section on social enterprise. And, what role Social enterprises could/should play in the Human Rights (Scotland) Act.

The second is I am making changes to my website. The main one the A-LEAF page will be removed once the A-LEAF website goes live. That will give me more time to focus on Human Rights and UN SDG goals pages.

Poverty In Scotland 2021: towards 2030 without poverty and the JRF Poverty in Scotland 2022 provided the opportunity to write a blog focused the reader’s attention on the poverty situation in Scotland. Poverty In Scotland 2021: towards 2030 without poverty and the JRF Poverty in Scotland 2022 also provided the opportunity to show that the Scottish Government has one hand tied behind her back.   

Humanitarian interventions are a state practice: only the state (or a group of states) can conduct legitimate humanitarian interventions. The hard reality is Scotland is not a state. Scotland lacks the policy and financial levers to do what needs to be done to tackle poverty in Scotland. The Scottish Government/Parliament do not have the powers to have a Human Rights (Scotland) Act. That is why it is delayed. For all the good it will do, I ask the UK Government one more time. Get off the political ideology trainwreck. See the cost of living crisis for what it is, a Humanitarian crisis. Bring forward Humanitarian interventions and give the Scottish Government the power it requires to make the Human Rights (Scotland) Act work.          

        

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walking the path between, political & apolitical?

/ dmh83 / Leave a comment

I joined the SNP in 2007. I joined for the same reason most people join a political party, the party’s vision, values, and, principles. To this date I still believe Scotland could and should be an independent country.

For years I pounded the streets, delivered leaflets, chapped doors, stood at polling stations, and, even became an unpaid call centre worker (only for campaigns). Today, however, I have given up my activism. Activism is for the young and the committed. Am nether.

I remember my first SNP conference in 2007/08 Alex Salmond, said something like “I heard a rumour. I think we win the election”. I grinned, like a child in a toy shop. I worked hard to win that election. I worked just as hard for years after that. I attended annual conferences, councils and branch meetings. I even joined a community council and community reference group, in the hope of becoming an SNP councillor.

By 2011 though the highlight of the national conference, was the fringe events. Talking to my third-sector colleagues. And, finding out more about the wider sector. From 2011, forward, keynote speeches had become like a pantomime to see who could do the best impression of Bill Murray, in the movie groundhog day. I could have given most of the speeches myself. All that would have been required was to plagiarise last year’s speech. I was done. Burnout is real.

I decided to focus on my third-sector work (voluntary). While returning to university to do my second undergraduate degree. I returned briefly to activism for cameos in the Scottish Independence referendum-2014. And the Referendum to leave the European Union-2016. Cameos’ is all they were. By 2017 I had- note, the choice of the word had- given up on party politics. I wanted no part of the civil war. A civil war that takes place on my Facebook feed daily. Things could be so different if either the 2014 or 2016 vote had gone differently.

I was out of party politics (though still hold membership). I was on the people-powered health and well-being reference group. Health and Social Care Alliance Scotland’s interface to The Public Bodies (Joint Working) (Scotland) Act and Inclusion Scotland’s sub-board on policy. By 2018 I was one module away from completing my Politics, Philosophy and Economics undergraduate degree at the Open University. When the opportunity to work on a community development programme in South Africa came up, I jumped at the chance. The jigsaw was almost complete all I had to do was pass DD309 Doing Economics. When it comes to Doing Economics Truss me not Liz.

Doing Economics book 1.

I just opened book one. Can you guess what the first topic is of DD309: Doing Economics? You really cannot make this up. The first topic in book one of DD309: Doing Economics, is Market liberalisation, inequality and financial crisis. If Liz Truss wants my copy of DD309: Doing Economics she can have it. though she no longer requires it, does she?

Upon completing my BA (Hons) in Politics, Philosophy and Economics at the Open University I had a strange desire to do a Masters’s degree. The MSc in Social Innovation looked to be a perfect choice. Glasgow Caledonian University was my first University back in 2001. Returning in 2019 was like a homecoming for me. And on completion of my MSc in 2021, I became a real alumnus. With all the powers and responsibilities that go with being an alumnus. There is one very small problem though. It is 2022, almost 2023 and I have still not used any of my knowledge and experience to achieve meaningful work. Yes, my colleague and I are working on setting up a social enterprise. A-LEAF is still nothing more than a detailed plan. And that brings me to the conundrum I face on Thursday 20 October 2022.   

By definition, companies limited by guarantee must be apolitical. The funny thing is when I woke up this morning. This thought never entered my head. I have the shambolic state affairs at Westminster for planting this seed of thought in my head. At 14:25 on 20 October 2022, I received an email from my SNP branch organiser, the email was a call for activists As I said above I gave up on activism, and am burned out. Additionally, A-LEAF’s principles, values and, vision is to empower the most marginalised citizens in Scottish communities.

Can I be considering putting my black a yellow rosette back on after everything I said in this blog? I think I am. However, as a co-founding member of A-LEAF, an apolitical social enterprise. There must be a conflict of interest. Yes, there is. A large conflict of interest. Here is the thing though, if I am to come off the political party bench. It will be to fight for a first-team place. What does that mean for A-LEAF? The wider question is: are my principles comparable with party politics anymore?

I caught a bit of BBC question time. The impression I got from the panel, is not one person is willing to take any leadership responsibility . As I said to a friend in the gym today. Yes, I have studied DD209-Running the Economy and DD309- Doing Economics, I still consider my knowledge, basic.

[T]he inadequacy of policy is something that should bother economists greatly … For times of crisis are when economists are most needed. If they cannot get their advice accepted in the clinch – or, worse yet, if they have no useful advice to offer – the whole enterprise of economic scholarship has failed in its most essential duty

And that is, of course, what has just happened [with the crisis starting in 2008]                                                           

Krugman, 2012 cited in Santos & Wuyts 2013, p.5

It looks to me. Someone with a basic understanding of economics. That what we should do- when I say “we”, I mean the shambolic Tory Government. Is to appoint a PM with a basic understanding of economics. If you cannot find someone in the House of Commons. Find someone in the House of Lords. At least one Lord will work for their £300 a day pay.                                                    

DD209-Running the Economy

On reflection on today’s events, the question I need to ask myself is. What is the most important thing to me, having the ability to influence Government policy from the outside- as part of the third sector. Or from the inside as an SNP activist and a paid member of the Government? I guess the final question I should ask the UK and Scottish Government ministers, is this. Are the third and fourth sectors sustainable?  

If the economic answer is no, the Third and Fourth sectors are not sustainable. Then surely the apolitical is political policy.                                           

                                                                  

  

Hope: the light in the darkness

/ dmh83 / Leave a comment

Hope is a strong emotion. Hope can guide you into the light, when on a dark path. Hope can provide strength when society demands weakness. Hope is your lighthouse. Hope, is what humans do when we can no longer dream. A dream is to believe. Hope is to believe in faith.

I support my legs, and, my legs support me.

nuknowing quote

the quote/saying above is my faith. No one is better than you to shape your future. In a past blog. I said something like:

Only you can self-manage your conditions, medical or not. I will reach out with open arms in the light but you must take the steps towards the light.

My light

Light, hope, faith. What? For the Open University module A2222 Exploring Philosophy, I was required to write a paper on the philosophy of Religion.

God: the supreme personal being existing beyond the world, creator and ruler of the universe

Religion: a system of belief in and worship of a supernatural, power or god.

Timothy Chappell, 2011, p.8

What is the link between God, Religion, hope, light, and, faith, and contemporary living? A lot. And, nothing. For that same A222 Exploring philosophy module I also had to write a paper on Political Philosophy. As it is political, party conference month I thought I should reflect on our obligation to respect the laws of the state.

Socrates: Leave me then, Crito, to fulfil the will of God, and to follow whither he leads

Our Obligation to Respect the Laws of the State: Plato Crito, Western Philosophy an anthology, 2015, p.626

Am I recommending the state be followed in the same way Socrates would have followed god? No. No, am not. What am recommending is the State should be followed until the point is reached where citizens of the state can no longer dream. What I am recommending to the reader. Is, find your light. and do all you can to hold on to it. Your light. Your principles, values, and, vision are the groundwork for your political philosophy. Remember though the light is not fixed in place.

Do what makes you happy. Not others

My last conference: date?

I become a member of the SNP on, 17 April 2007. To this date, I remain a member of the Glasgow Shettleston branch.

I do not, however, go to branch meetings. Or conferences.

Why? Because the “benefits of greater equality are very widespread” (Wilkinson and Pickett, 2009, p.177).

Am not saying there is, wealth inequality in membership income (most likely is). Am saying I liked the party when after a day of meetings you could have a drink with the cabinet minister in The Royal George Hotel bar.

I was asked not so long ago by a manager, of the charity Who Cares? Scotland. Is starting a social enterprise, something I really wish to do,

given my political/policy background. Am sure my answer was Yes am 100+10 per cent committed to A-LEAF (my social enterprise).

On reflection, I really should have said am want to start A-LEAF to push a political and policy agenda. A-LEAF is apolitical, it will always remain so. Ben Fredman & Craig Carey authors of 4Th Sector Entrepreneurship say a social enterprise’s principles, values, and, vision, are, shaped by the lived experience of their owners.

However, I take the view that the thinking and actions of the owner are shaped by the social enterprise. let me explain A-LEAF’s, vision is that every citizen in society should have dignity. My personal view and the view of the state on Assisted Dying. For the lack of a better word, is, it is wrong. However, dignity must also come in death. Therefore, I have no choice, I have to agree with Scottish Humanists, assisted Dying should be the choice of individual citizens.

As a member of a political party. Or a third-sector organisation I cannot change the parties/organisation’s policy as fast as I can change my mind or amend A-LEAF’s vision. A-LEAF’s vision, values, and, principles are our hopes for citizens and communities in Scotland. I wish to dream not only hope. By walking into the light with A-LEAF I can do just that.

Conclusion

As citizens of societies across the UK. We all need to have hope. Hope for a better tomorrow. We cannot only hope, we must dream. Political parties and political philosophy are not God. Have faith in yourself, in your ideas. Stand up, say and do what makes you happy. Join a community which has your vision, values, and, principles. When your values, and, principles change. Change your community(s).

For me, my vision, values, and, principles are in the fourth sector or social enterprise sector. If yours is in the third sector or political sector, fantastic. Do what makes you happy. please though, do not follow in blind faith.