Chapter Two studied the medical model of disability in detail – I put it under a Petri dish. Chapter Two reached a compromise that the medical model is a necessity, allowing medical staff to maintain interpersonal relationships without establishing a close personal relationship.  

Interpersonal relationships are acceptable for medical staff with little direct contact with patients. The words ‘interpersonal relationships’ communicate a cold working environment.

When volunteering with Macmillan Cancer Support, I was verbally told off for using ‘interpersonal’ to describe the relationship between the volunteers and the service users.  

To this day, I think ‘interpersonal’ is legitimate. Even though around 80 per cent of children survive for five years after a cancer diagnosis, around 20 per cent do not (Cancer Research UK). Growing up in that circle will make you know a minority of those 20 per cent. Once volunteering in the circle, the last thing you desire is to form a personal bond with the client.      

Macmillan nurses specifically develop personal bonds with clients. You can find printed copies of “People Behind Cancer Care: Patient and Staff Stories” at Glasgow Life libraries or on the Macmillan website: the-people-behind-cancer-care.pdf (i). Equipped with this understanding, I understand the verbal telling-off.

How, though, does living with the side effects of a medulloblastoma/stroke and volunteering with Macmillan Cancer Support link back to chapter two and the medical model of disability?  

The surgeons and I (in 2010) are like the medical model of disability. Kill the disease and maintain a distance because 20 per cent of patients will die within five years. As Richard Koch states in “The 80/20 Principle.”

“It even holds the key to raising the quality and quantity of public services”.

(Koch, 1997, p. 3)

I am not suggesting that surgeons only offer 20 per cent of their time to patients who are likely to die. I suggest that public services in contemporary society are designed for a minimum of 80 percent of the population because 20 percent will not contribute to GPD growth. That argument is fundamentally false. I’ll detail why in chapter seven.

I return the chapter’s attention to Macmillan nurses. Macmillan nurses give the best possible care to every patient. If society were designed with the characteristics of a Macmillan nurse, then the social norms of society would be based on the social model of disability and not the medical model.     

This is for readers who must be made aware of the social model. The social model of disability says:

“People are disabled by societal barriers, not by their impairment or difference. Barriers can be physical, like a building not having accessible toilets. Or [barriers] can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.”

(source SCOPE UK)

Disability Rights UK and SENCE define the social model of disability as citizens do not have disabilities; instead, society has a design problem (paraphrased).

Disability Rights UK and SENCE definitions provide a more coherent understanding. They offer a holistic overview with a potential solution. On the other hand, SCOPE’s definition is detailed and addresses only the complications arising from the medical model, not how society can transition to the social model.    

For example, citizens online state that disabled people are 35 per cent less likely to have digital skills for life. Glasgow Disability Alliance (GDA) suggests that disabled people are four times more likely to face digital exclusion.

A staggering 82 per cent of GDA members surveyed said isolation had been a significant concern during COVID-19. Sixty per cent also reported needing more technology, connectivity, or confidence to get online.  

A report by Inclusion Scotland titled “Disabled People’s Rights in an Artificial Intelligent World” highlights that The World Health Organisation estimates that more than 2.5 billion disabled people will need one or more assistive technologies in 2030. Yet, almost a billion disabled people cannot access these products.

My disabilities regarding technology are not as horrific. However, I am required to blind my left eye and correct the vision in my right eye to see a laptop and desktop screen. I don’t have medical or field tests to confirm this thesis. However, I could view a Cathode-ray tube (CRT) monitor fine. I can also see a mobile phone fine.  Therefore, I conclude that the new screen technology and screen refresh rates prevent my brain from interpreting the signals sent from my eyes.    

While that conclusion is entirely subjective, what is not subjective is that as a child, I was informed by a medical professional that I could not get glasses with a frosted lens, as the brain was damaged, not my eyes. Ironically, 30 years or so on a simple frosted lens is what allows for the writing of this book.      

My experience and the experiences of citizens with impairment illustrate that the medical model is out of date and must be replaced with the social model as soon as possible. However, I will blur the waters and suggest an alternative definition for the social model. My definition of the social model would be.

Citizens know the holistic person best. Society should, therefore, make the necessary adjustments and technical provisions for maximum well-being. Providing citizens with the fundamental human right of dignity,   

In what remains of this chapter, I will focus on how I am disabled by society. The most visual sign that I am disabled by society is that I cannot hear high-pitched sounds. The limitations of not hearing high-pitched sounds in the workplace are that if I am working on the shop floor and the downstairs back door goes, I will not hear the bell, as the distance the sound has travelled results in it becoming high-pitched.  Another area where I am disabled by society in the workplace is that if I am working on hot food counters or in the bakery, I can struggle with oven alarms.

Once again, this is a fundamental design issue. First, the store’s geographical layout excludes workers with hearing issues. Second, industrial ovens are not designed for workers with hearing loss, as the alarms are too high-pitched. My lived experience shows that society is designed to do two things. It benefits citizens with no physical or mental limitations, and if citizens are not contributing directly to GDP growth, they will be out of sight and out of mind.      

My hearing loss also means I cannot hear other alarms at home, such as fire alarms and smart alarms for gas and electricity. Don’t people with hearing loss burn in fires? Or pay gas and electricity bills?

Society has disabled me by not designing the workplace to take into consideration my hearing loss. Additionally, the older citizens become, the more hearing a citizen is likely to lose. According to the National Institute of deafness and other communication disorders:

“… about one in three people in the USA between the age of 65 and 74 has hearing loss. Nearly half of those older than 75 have difficulty hearing”. 

Given that the UK state pension age and, therefore, retirement age is rising to 67, perhaps 71 (source The Guardian), would it not make sense to design the workplace and technology with that in mind?      

The final part of my impairment is a weakness in my left-hand side caused by a stroke. Despite spending much time, state and personal capital on rehabilitation, my left hand still works slower than my right. Therefore, I cannot chop onions, dice carrots, or peel potatoes. Effectively, I cannot make a meal from scratch. Of course, I can buy prepared vegetables. However, prepared vegetables cost more. Therefore, like other citizens with an impairment who have, on average, an extra 63 per cent living cost (source SCOPE). I am not saying I have a 63 per cent financial capital requirement above the Scottish living wage. I do, however, have additional costs to live well.

I hope the reader takes two things away from the chapter. One even though I was diagnosed 36 years ago with a Medulloblastoma, I still have numerous side effects today. Two societies are designed in the same way the medical model operates. That must change.