Category: Disability Issues

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disability Disability Issues Empathy Healthcare Disparities Medical Humanities Patient-Centered Care

Why as a society is difference viewed as unattractive?

Why as a society is difference viewed as unattractive?

By Lauren Higgins

 

Cherri (2022) The Adoration of the Golden Calf

 

The artefact I have selected is a lamb taxidermy called, ‘The Adoration of the Golden Calf, after Poussin’, which was created in 2022 by Ali Cherri and finished using wood, jesmonite and gold leaf.

The piece was commissioned in 2021 as part of the National Gallery Artist in Residence programme and sat within the Sainsbury wing of the art museum as part of the ‘If you prick us, do we not bleed?’ project.  This exhibition focused on historical pieces which had been vandalised when displayed, with Cherri assembling individual artworks to reflect the trauma of the original. This taxidermy of a lamb that died due to severe birth abnormalities, specifically relates to the Golden Calf depicted in the work of Poussin, which was destroyed with spray paint in 2011 (Wilson, 2011).

This unusual, alien-like figure immediately captured my interest, as it stood in high contrast to the beautifully depicted biblical scenes of the Renaissance paintings which surrounded it. Centred within the gallery, I also noticed that this artefact had caught the attention of large crowds, with many recoiling in disgust and horror at the physical appearance of the lamb. It has often been deemed human nature to be captivated and intrigued by the unknown or different, however the pure hatred that was directed towards this piece simply due to its distorted appearance shocked and outraged me. I, therefore, began to consider the animosity that individuals who suffer from noticeable deformities face, and the challenges of living in a society that doesn’t fully accept those who are atypical.

The distinct characteristics of the lamb also reminded me of the infamous Siamese conjoined twins. I thought about the struggles they must have encountered not only due to the disability itself, but also the unwanted views and opinions of society at the time.  I wondered whether after 100 years since their death if they would receive a similar reaction of repulsion which I witnessed being directed towards the abnormalities of this figure (Bahjat, 2018). Moreover, this sculpture encouraged me to reflect upon my own disability; the impact it has had on my life and the additional challenges I shall encounter as a medical student.

Throughout history, individuals deemed to be ‘medical oddities’, have been subject to curiosity from the public audience and even used as forms of entertainment for the so-called freak shows (Grande, 2010).  The exhibition of extraordinary bodies occurred across Europe and America during the Victorian period, whereby physical difference was seen as a profitable market (Durbach, 2012). Chang and Eng Bunker, credited as the original Siamese twins, were examples of individuals showcased around the world for paying audiences (Bahjat, 2018). The Bunker brothers were attached at the breastbone via a ‘small piece of cartilage’, but each had their own set of organs and body, allowing them to carry out the activities of a normal man (Bahjat, 2018).

At just the age of 17, the brothers’ peculiarities were identified as having ‘commercial potential’ by Robert Hunter, who proceeded to buy the boys from their mother in Thailand and exhibit them across the globe (Leonard, 2014). The idea that the Bunker brothers, and so many other individuals with physical deformities, were used as amusement for others is deeply saddening (Kattel, 2018). The humiliating and dehumanising nature of freak shows makes me consider the psychological implications patients with physical disabilities must endure due to the strain of unsolicited comments and community opinions.

Alongside the link to the Siamese twins, the structural deformity of the artefact reminded me of my own physical anomaly. I have an idiopathic form of scoliosis, which is the lateral deviation of the vertebral column without a known cause (Martin and Law, 2020, p.692). As a result, I have uneven hips and shoulders, poor posture, severe back pain/ discomfort, and lowered self-esteem due to an obvious hump-like structure caused by the posterior raising of my ribcage (kyphosis). Similarly, to the ‘freaks’ of the 19th century, I have personally been subject to wondering eyes, judgmental expressions, and hurtful remarks about my appearance when out in public (Grande, 2010). I, therefore, have experienced first-hand the damaging mental health consequences indirectly connected to my disability.

Although my scoliosis has posed many additional challenges in my life, I believe that having a disability as a medical professional may be advantageous in being able to effectively empathise with patients suffering from other long-term health issues. With disabled people aged between 16-64 reporting lowered well-being ratings on happiness; worthwhile and life satisfaction scores; and increased anxiety levels than non-disabled counterparts, the NHS is currently failing to provide adequate support to those with continuing health problems (Office for National Statistics, 2021). Hence, as a training doctor, I recognise that I will be in a privileged position to raise awareness about the psychological burden of lasting illness among my able-bodied colleagues and the general public. In doing so, I hope that healthcare workers will begin to take a holistic approach in viewing disability and think further than treating the body and look also to healing the mind.

The introduction of the Equality Act 2010, was a positive step into protecting people with disabilities from discrimination within the workplace and wider population, demonstrating the unquestionable progression society has made in accepting disability from the brazen Victorian freak shows. Such legislation introduced by the government has had an instrumental influence in encouraging people with disabilities into employment and societal activities (i.e., sports, community groups and higher education). For example, between 2013 – 2020, there was an increase of 8.1% in the proportion of disabled people in employment, with 2.6 million disabled women and 1.8 million disabled men working, demonstrating the constructive role of such parliamentary bills (Powell, 2021). Although the apparent improvements, the uneducated reactions I witnessed towards the lamb’s defects, along with my own experiences, would suggest that even in the 21st century, disabled people are inevitably going to be made to feel unsafe by the minority who still view difference as ugly.

 

In conclusion, the artefact identifies and represents the exploitation of vulnerable individuals with deformities and highlights the dangerous way humans react to things that they are unfamiliar with. I observed how most of the responses to this piece within the gallery, were profoundly negative, and I have come to believe that this reaction of repugnance is reflective of the poor treatment of disabled people within today’s society. This piece has led to me uncovering the failures of the healthcare system in the past to protect individuals most at risk from mistreatment and has opened my eyes to the challenges I may encounter during my medical career in terms of counteracting negative public perception of disabilities.

Although legislation introduced by the government aims to pave the way for a more optimistic future whereby disabled people are not faced with judgment and prejudice, such discrimination is rooted within British history, and thus I appreciate it will take time to fully shift public opinion. I, therefore, hope in the future as a medical student, I can educate those around me about the damaging consequences of ignorance towards difference, and support those who face maltreatment because they do not fit into the idealistic prototype pushed by society.

Reference list-

Bahjat, M. (2018) Chang and Eng Bunker (1811-1874). Available at: https://embryo.asu.edu/pages/chang-and-eng-bunker-1811-1874 (Accessed: 13 April 2022).

Cherri, A. (2022) The Adoration of the Golden Calf, after Poussin [taxidermy] The National Gallery, London (Viewed: 11 April 2022).

Durbach, N. (2012) ‘Skin Wonders’: Body Worlds and the Victorian Freak Show’, Journal of the History of Medicine and Allied Sciences, 69(1), pp. 38-67. Available at: https://doi.org/10.1093/jhmas/jrs035

Equality Act 2010, c. 1. Available at: https://www.legislation.gov.uk/ukpga/2010/15/part/11/chapter/1 (Accessed: 13 April 2022).

Grande, L. (2010) ‘Strange and Bizarre: The History of Freak Shows’, Things said
and done. Available at: https://thingssaidanddone.wordpress.com/2010/09/26/strange-and-bizarre-the-history-of-freak-shows/ (Accessed: 12 April 2022).

Kattel, P. (2018) ‘Conjoined Twins’, Journal of Nepal Medical Association, 56(211), pp.708-710. Available at: https://www.jnma.com.np/jnma/index.php/jnma/article/view/3526/2764 (Accessed: 12 April 2022).

Leonard, T. (2014) ‘How the original Siamese twins had 21 children by two sisters… while sharing one (reinforced) bed’, The Daily Mail, 7 November. Available at: https://www.dailymail.co.uk/news/article-2825888/How-original-Siamese-twins-21-children-two-sisters-sharing-one-reinforced-bed.html (Accessed: 13 April 2022).

Martin, E. and Law, J. (eds) (2020) Concise Medical Dictionary. 10th edn. Oxford: Oxford University Press.

Office for National Statistics (2021) Outcomes for disabled people in the UK: 2020. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/outcomesfordisabledpeopleintheuk/2020 (Accessed: 27 April 2022).

Powell, A. (2021) Disabled people in employment. (House of Commons Library briefing paper 7540). Available at: https://researchbriefings.files.parliament.uk/documents/CBP-7540/CBP-7540.pdf (Accessed: 13 April 2022).

Wilson, C. (2011) ‘Man held after Poussin painting is vandalised at National Gallery’, The Guardian, 17 July. Available at: https://www.theguardian.com/uk/2011/jul/17/poussin-attack-national-gallery (Accessed: 12 April 2022).

Categories
Clinical Disability Issues Reflection

Asperger’s & Neurodiversity

“He who is different from me does not impoverish me – he enriches me. Our unity is constituted in something higher than ourselves – in Man… For no man seeks to hear his own echo, or to find his reflection in the glass.” 

–  Antoine de Saint-Exupery (11)

We live in a world of increasing diversity and acceptance. With more efficient travel, greater connections and more robust discrimination laws, never before have so many opportunities been laid out for us to endeavor. Women can vote, same-sex couples can marry; we are on the cusp of entering a new era. Yet amongst all these historical, cultural and economical changes, what we often forget is the psychological. If we are to accept people for who they are, with respect and dignity, then why do we then choose to label them with terms such as ‘Asperger’s’ or ‘Autistic’ and to then reduce the paths they may be able to follow?

What is Neurodiversity?

‘My brain is a jewel. I am amazed with the mind that I have.’ – Muskie, diagnosed with Asperger Syndrome (2)

In the late 1990s, sociologist Judy Singer invented the term neurodiversity; a term that described conditions such as Autism and ADHD (5). This neurodiversity movement was born out of the autistic civil rights movement in the 1990s, and has grown rapidly thanks to the internet. The movement consisted mainly of members who had been diagnosed with Asperger’s, but did not wish to be ‘cured.’ This perspective, a step away from the mainstream method of  categorization, led to books (12) and articles (13) being written, the launching of groups such as the Autism Self Advocacy Network, and a novel  perspective of human thinking.

Neurodiversity is a term very similar to cultural or biological diversity; it takes into account the wide variety of human experiences, and respects people for their differences. Such an approach steps away from the medical model of viewing disability, instead focusing on the talents and perspective that each person can bring to the world. The implications of such a movement are widespread; the right to be treated with respect and dignity, regardless of the way one thinks.

What is Autism?

‘Autism is pervasive, colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence’ – autistic activist Jim Sinclair, 1993 (2)

Autism is found under Pervasive Developmental Disorders in the International Classification of Diseases-10. The criteria listed include impairment in social communication and social attachments (6). First used in 1910 by a Swiss Psychiatrist named Bleuler, it was transformed into its modern-day meaning in 1944 by the Austrian paediatrician Hans Asperger, when he published its first definition. The disorder has been termed Asperger’s Syndrome ever since (7).

Since its first use, the incidence of Autism has increased, leading to increased public attention both in the media and within the medical circle (1). This gradual increase has often led to the question: is this a disease of biology, or of society? Indeed, as our society has become more medicalized, Autism has entered into an era fixated with treatment and cure.

What is ‘normal’?

By continuing to medicalize a different way of looking at the world and of interacting with others, we must first define what it means to have a ‘normal’ perspective of such things.

This question brings to light the very fact that no one is normal. From the way we dress, to the jobs we undertake. From our hobbies to our distractions, our loves to our hates, our desires to our ventures, we are all different. How do we then take out our marking pen and draw a line between those who are ‘normal’ and those who are not? In fact, from an ‘autistic’ point of view, people who are non-autistic are easily distractible, obsessed with social interaction and suffer from profound deficits in attention to detail. The idea of normality changes with time, place, date and gender; what is normal here in the UK may well be considered unacceptable in Sub-Saharan Africa.

Rather than focusing on the normal, we should be focusing on individuality; on what each person can contribute to our society, and to themselves. This boundary between normality and disability is an artifact, a division drawn by man that merely reflects the values of the society in which he resides. For example, dyslexia is based upon our value to read sufficiently, something that would  not have been as significant hundreds of years ago. So what does our medicalization of Autism tell us about ourselves?

As the modern era continues to be transformed by technology, perhaps what we build in the future –with the internet in our laps and a screen at every corner – will become a haven for those who have difficulty with eye contact and with body language. The diagnosis of Autism today may well be different from the diagnosis tomorrow.

Is Autism an identity or a disease?

In the absence of any biomarkers for diagnosing psychiatric illnesses, psychiatry often utilizes behavioural deviations instead (4). Using this argument, one could suggest that psychiatry may end up ignoring advantageous behaviors that are outside the ‘norm’ (4). What we may see instead are the difficulties that entrench a person. Rather than encouraging a young child to develop their interests and their hobbies, instead we may focus purely on their intense obsessions on the minutest details. Imagine what this means for a child. Instead of being seen as a building block of opportunities for ideas and growth, these children may instead see themselves as having un-breakable boundaries.

Yet, a label can have a lot of power. A diagnosis places upon the person a special status within society. It opens the doorway to specialist interventions and support from multiple sectors, helping the individual to succeed in certain areas of life that they may find more demanding than others.

There are clearly many things that children with Asperger’s have difficulty with; areas where they require intensive support and management. It is through these interventions that children may then be able to better integrate with society and feel valued. But the idea of finding a cure seems a step too far. As science continues to delve into our lives, we gradually begin to see everything with a different lens; that there must be pathology in everything that is different, and there must be an answer – a pill, an operation, a test.

But it is not all bad. The medical model has brought with it huge shifts within science – new drugs, new insights and a new life for many, many people. By medicalizing something, by using physiology to explain a condition, you are then able to destigmatize it. Thus, a person is no longer a schizophrenic, but instead suffers from schizophrenia – a disease entity of its own.

Whether or not such a viewpoint can be used for a diagnosis such as Autism is a difficult question to answer. For some, the explanation that Autism is an ‘atypical wiring of the brain’ (2) may help them to understand the difficulties that they face. Yet others may strongly identify with such a diagnosis, claiming that it is a gift that allows them to view the world through a different lens, giving them the opportunity to appreciate the depths of the human mind. They may choose to see themselves not as pathological, as wiring gone wrong, but as privileged beings who have been granted a gift of insight that others cannot fully appreciate.

Different vs Defective

As with many things in life, Autism falls on a spectrum. One could argue that by focusing on those who are high-functioning, and therefore able to have this debate, you are minimizing the true suffering of those who do not have this privilege. Indeed it can be argued that because it is on a spectrum, one should be careful not to blanket everyone with Autism as either having a ‘disability’ or simply being ‘high-functioning.’ The aim is to view Autism with a more open mind, rather than as something that requires a gene to be unlocked. This has received appreciation by the American Psychiatric Association, who recently converted the diagnoses of ‘Autism’ and ‘Aspergers’ into one simple diagnosis of ‘Autism Spectrum Disorder.’ Through the creation of this diagnosis, the emphasis has been placed on the idea that people do not fit into boxes, but lie upon a continual line that can encompass a wide range of behaviour.

Neurodiversity is the idea that neurological differences such as Autism are due to normal variation, rather than a sign of pathology. This point of view emphasises the fact that these people do not necessarily need to be ‘cured’ but helped and accommodated. If we look at the progression of science and the humanities, we see that the breakthroughs have been developed by minds that think differently; create links where others have drawn their blinds. If we are to grow as human beings, then this is the approach that is required; not just to grow scientifically, but also morally. Unfortunately, we are currently drawn towards questions of causation and cure – the link between Autism and MMR by Wakefield being just one example (8); an attempt to find blame, and ask the question: why is my child the way he/she is?

And to people with these conditions themselves, surely the idea of being part of a natural variation is much more appealing than being seen as something that is broken and needs to be ‘fixed.’ To describe someone as defective is to take away the essence of who that person is, and what they can bring to the world, to their family, to themselves.

Instead of creating a world focused on finding cures, on ridding the world of autism, we should be building the foundations to allow people to receive the support they deserve, to have their rights heard. Such efforts include early interventions for speech and behavior therapies, and building more accommodating home and work environments.

If we are to accept the fact that equality has been applied to race, religion, gender and sexual orientation, then why can it not be applied to people with different ways of thinking and interacting as well?

We are already seeing glimmers of this in our current society. Mark Haddon’s novel, The Curious Incident of the Dog in the Night-time, written from the point of view of a young boy with Autism, helps readers to transcend their lives and view the world from eyes that see differently, a mind that whirs at a different tone. This novel  is studied by English students across the UK (9), and perhaps by encouraging these types of empathetic endeavours, rooted in the humanities rather than the sciences, a new way of thinking can be formed, where we can focus on acceptance rather than on cure.

‘An autistic child can only be helped if a serious attempt is made to see the world from his point of view.’ (10)

References

  1. Baker, D.L. 2006. Neurodiversity, neurological disability and the public sector: notes on the autism spectrum. Disability & Society. 21:15-29
  2. Ortega, F. The Cerebral Subject and the Challenge of Neurodiversity. 4:425-445
  3. Jaarsma, P., Welin, S. 2012. Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement. Health Care Analysis. 20:20-30
  4. Kapp, S.K., Fillespie-Lynch, K., Sherman, L.E., Hutman, T. Deficit, Difference, or Both? Autism and Neurodiversity. Develeopmental Psychology. 49:59-71
  5. Silberman, S. 2013. Neurodiversity reqires conventional thinking about brains [Online]. Available at: http://www.wired.com/2013/04/neurodiversity/ [Accessed: 1st January 2016]
  6. World Health Organisation. 2016. ICD-10: International statistical classification of diseases and related health problems. Geneva: World Health Organisation
  7. McGuinness, S. 2015. History of Autism [Online]. Available at: http://www.autismuk.com/home-page/history-of-autism/ [Accessed: 1st January 2016]
  8. Godlee, F., Smith, J., Marcovitch, H. 2011. Wakefield’s article linking MMR vaccine and autism was fraudulent. The British Medical Journal. 342:c7452
  9. 2013. Subject Content [Online]. Available at: http://www.aqa.org.uk/subjects/english/aqa-certificate/english-literature-8710/subject-content/why-choose [Accessed: 1st January 2016]
  10. Stanton, M. 2006. What is Neurodiversity? [Online]. Available at: https://mikestanton.wordpress.com/my-autism-pages/what-is-neurodiversity/ [Accessed: 1st January 2016]
  11. Evans, T. 2015. Counselling Skills for Becoming a Wiser Practitioner: Tools, Techniques and Reflections for Building Practice Wisdom. Jessica Kingsley Publishers.
  12. Silberman, S. 2015. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. Avery
  13. Solomon, A. 2008. The Autism Rights Movement [Online]. Available at: http://nymag.com/news/features/47225/ [Accessed: 28th January 2016]

Featured image:
Diversity by Séb

Categories
Disability Issues Lifestyle Reflection

Personality Disorders

In individuals, insanity is rare; but in groups, parties, nations and epochs, it is the rule.
– Friedrich Nietzsche

Personality Disorders (PDs) are defined by the DSM-V as significant impairments in the self and interpersonal functioning across time, which cannot be explained by socio-cultural environment or substance abuse (American Psychiatric Association 2012). These disorders are unique within psychiatry because, unlike many of the Axis I disorders, they did not begin to take form until the 19th century. They also tend to create controversy around their definitions, as they are molded by the behavioural standards within a society, and are therefore quite subjective. This subjectivity may be the reason why personality disorders have the lowest levels of reliability and validity among all psychiatric disorders (Alarcon et al. 1995).

There is an important difference between personality styles and disorders, and clinicians must be able to make this distinction. As society changes, roles and values are transformed, leading to the creation of new disorders. One example of this is  internet gaming disorder.

Perhaps we should start by clarifying our terms: what is personality? Is it something that is inherent and unchangeable? Or is it a malleable entity, a wisp of smoke that can never be grasped; a question to hang above the philosophers’ heads? In 1995, Alarcon et al. suggest that personality implies a way of reacting to stimuli, coping with stress and acting on one’s beliefs about oneself and the world. It has been suggested that a personality disorder is almost a caricature of the normal personality, and that it can reflect the distorted aspects of a person’s time and culture.

Society plays a very powerful role when it comes to psychological disorders. It has been suggested that prejudice can distort societies’ perceptions towards those from disadvantaged backgrounds and inflate the rates of personality disorders in these groups. For example, it has been suggested that almost half of inner city youth who have been diagnosed with antisocial personality disorder have been misdiagnosed, because their behaviors are occurring in a unique cultural context; a context which includes the prevalence of behavioral systems which value violent behavior as an acceptable survival strategy (Alarcon et al. 1995). Furthermore, antisocial behaviour could be seen as an adaptation to the excessive demands of our modern world. With the increasing expectations placed upon our youth, not only for wealth and success, but also for a ‘happy’ life with a spouse and child, a fast car and a big house, is it any wonder that many kids rebel against such idealistic expectations? Perhaps it is society that is towing the soil, encouraging the growth of such ‘pathological behaviour’ in our culture. Are we simply pushing humanity too far?

Borderline Personality Disorder (BPD) is another example of a personality disorder that has become increasingly common in the modern world (Grant et al. 2008). Those who have ever set foot on a psychiatric ward will be familiar with the label, as it is the most prevalent category of personality disorder within the mental health services (National Collaborating Centre for Mental Health, 2009).

BPD is a relatively new diagnostic entity, first described in the 20th century. Although people committed suicide in the past, self-harm in the form of wrist cutting is relatively new, only appearing on psychiatry’s radar since the 1960s (Favazza, A.R. 2011). As societies evolve, symptom banks change, and in today’s world there appears to be an increasing acceptance of self-harm as a signal of distress– a phenomenon termed ‘social contagion’ (Jarvi, et al. 2013). Traits underlying BPD are impulsivity and affective instability. In today’s world, these impulsive symptoms are one of the most common forms of expressing distress among the young. Indeed, it has been suggested that BPD risk factors are associated with modern life (Paris and Lis 2013).

Do we as a society place such high expectations on those around us that we must fall back upon psychological labels to explain away those who do not fit into our idea of perfection? I suggest that perhaps this sudden surge in personality disorders does not merely reflect our increasing awareness of such pathologies, but also a deeper issue within modern society. Perhaps we have become so obsessed with success, with money, with beauty, that we have forgotten what it means to be human. To love, to feel, to belong.

And if this is true, then the answer lies not within the leaves of a doctor’s prescription pad, nor within the four walls of a hospital ward, but in the society that we have created for ourselves. Perhaps this rise in personality disorders, this explosion of emotional distress, is a signal that the world we have created for ourselves may be doing more harm than good. The increasing emphasis on achievements, success, wealth, and fame may indeed be turning into a poison. And if this is the case, then the antidote lies beyond the physicians’ hands; it is a task that is placed on all of us, to encourage our children to create a world for themselves that is filled with love and belonging, rather than goals and desires. It is only through an increasing emphasis upon our own humanity that we can begin to combat this psychological plague.

References

  1. Alarcon, R., Foulks, E.F. 1995. Personality Disorders and Culture: Contemporary Clinical Views (Part A). Cultural Diversity and Mental Health. 1:3-17
  2. American Psychiatric Association. 2012. DSM-IV and DSM-5 Criteria for the Personality Disorders.
  3. Chavira, D.A. et al. 2003. Ethnicity and four personality disorders. Comprehensive Psychiatry. 44:483-491
  4. Favazza, A.R. 2011. Bodies under Siege: Self-mutilation, Nonsuicidal Self-injury, and Body Modification in Culture and Psychiatry. 3rd Ed. JHU Press.
  5. Grant, B. Stinson, F.S., Saha, T.D., Smith, S.M., Dawson, D.A., Pulay, A.J., Pickering, R.P., Ruan, W.J. 2008. Prevalence, correlates, disability, and comorbidity of DSM-IV borderline personality disorder: results from the Wave 2 National Epidemiological Survey on Alcohol and Related Conditions. Journal of Clinical Psychiatry. 69:522-545
  6. Jarvi, S., Jackson, B., Swenson, L., Crawford, H. 2013. The impact of social contagion on non-suicidal self-injury: a review of the literature. Archives of Suicidal Research. 17:1-19
  7. National Collaborating Centre for Mental Health. 2009. Borderline Personality Disorder, The NICE Guideline on Treatment and Management. The British Psychological Society, The Royal College of Psychiatrists.
  8. Paris, J., Lis, E. Can sociocultural and historical mechanisms influence the development of borderline personality disorder? 2013. Transcultural Psychiatry. 50:140-151

Featured image:
Female Warrior # 14 “Extinction” by CHRISTIAAN TONNIS

 

Categories
Disability Issues Lifestyle Opinion

Hearing Voices

“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.”
― Oliver Sacks

Hallucinations are a window into the mind. They illustrate the complexity of the human mind and the pathways that can lead us astray. Art has explored the idea of madness over the centuries, translating paranoia into tragedies, delusions into dramas. It is only in the 20th century that hallucinations have been described as a sign of illness. In the past, hearing voices used to be linked with saintliness and spiritual enlightenment: a path towards God. Hallucinations are also heavy with cultural meanings: we can look back at Moses and the burning bush or Buddha beneath the Bo tree. Different cultures prescribe meaning to different senses: Protestants emphasise hearing while Catholics emphasise vision. Perhaps most interestingly, West Africans partake in kinesthesis; Westerners distrust unusual sensory experiences and label them as pathological.

The term auditory verbal hallucination refers to hearing a voice in the absence of an external stimulus. Auditory hallucinations are more common within the general population than many of us may think, especially in times of stress: up to 70% of people have been found to hear the voice of their dead relative during bereavement. Most of the people who report auditory hallucinations within population studies do not report any distress or impairment; they are able to live happily alongside these voices within their heads. Some people find that their voices can give them guidance through difficult times, while others see them as a companion or a best friend. After all, we do not consider it abnormal for a child to report that they have an imaginary friend. This relationship between the person and their voice is incredibly complex – as complex as any other relationship we may encounter, and we must tread softly when we deal with such intimacy.

Hearing Voices as a Disease
Hearing voices is not the same as having a sore throat. Hearing a voice can have a deep significant meaning to the person in a way that a sore throat cannot. So what makes the voice pathological?

Western Society sees hallucinations as pathognomonic of a serious mental health disorder. Serious psychotic disorders are however recognized across all cultures with a similar pattern of symptoms. Hallucinations that are linked with serious psychotic disorders are described as ‘pathoplastic’ – that is, they are shaped by local meanings. Behind the response to voices is the attitude of society. The society we grow up in has a lot to say about the meaning of these voices: Mexican-American relatives are more likely to display tolerance and sympathy for a relative hearing voices compared to Euro-American families, who are more likely to display criticism and hostility. If you grow up in a society where you are taught that hearing voices is wrong, this will affect your relationship with them. Imagine if you were a child hearing voices, and you turned to your parents to support and found they were even more afraid of the voices than you. Would you see your voices as an enemy, or a friend?

People experience the mind and its underlying symptoms differently depending on where they grow up. Prof Luhrmann found that US patients self-identify as schizophrenic, using the diagnosis to describe their condition through textbook definitions. They accept the medical diagnosis and are even able to recite the medical criteria – for them, the meaning of the voice is “to be crazy.” In general, the American sample did not treat their voices as a person and many of their voices were filled with violence. On the other hand, in Accra people described voices as a spiritual attack. Half of patients reported hearing only positive voices. Even when hearing negative voices, individuals also described good voices telling them to ignore these negative influences. Some people in Accra even said these voices kept them alive. In India, hearing voices is viewed differently yet again. Many of the doctors don’t mention a diagnosis and families don’t ask. None of the patient’s believed they had a devastating illness, and thus compared to the West, most of them expected to get better. Does this suggest that people suffering from hallucinations in the developed world have a better quality of life?

It has been suggested that within the Euro-American culture, an individual who is unable to distinguish between reality and imagination is labelled as pathological, while in many non-Western societies such rigidities do not exist. But this labelling goes beyond cultures; it transcends time. Mitchell and Vierkan compared hallucinations in an East Texas hospital both in the 1930s and then in the 1980s. They found that command hallucinations of the 1930s were found to be more religious, such as “lean on the Lord,” while those of the 1980s were more destructive, such as “kill yourself.” Perhaps such changes reflect the hostile environment we have created for our patients, and thus leads onto the questions: are we treating our patients with a dignified and open manner? Do we treat them as fellow individuals?

If you do not envision schizophrenia as a life sentence, you increase the chance that patients will be able to discover their own resilience.
– Prof Luhrmannn

Hearing Voices as a part of Life
In 1987 psychiatrist Marius Romme appeared on Dutch television with his patient Patsy Hague, a voice hearer, to publicise his new approach to voice hearing – that attributing meaning to one’s voices changed the way one responded to them. Four hundred and fifty people responded to this television appearance, reporting that they heard voices. More than half of the people who responded had never sought professional help: they lived happily with their voices. From this stemmed the world’s first Hearing Voices Congress held in Holland that year, and from this then grew the Hearing Voices Movement.

The Hearing Voices Movement states that hearing voices is part of human variation. It rejects the pathologising of auditory hallucinations and emphasizes empowerment of the individual. The Movement combats the stereotype of the “all-powerful psychiatrist” by giving more control to the voice-hearer and viewing the hallucinations not as a disease but as a key part of their identity. Eleanor Longden, a lady diagnosed with Schizophrenia is one example of how such a movement can have a significant impact on a person’s life. Below she describes how her meeting with the psychiatrist, Pat Bracken, became a turning point:

“[he] didn’t use this terrible, mechanistic, clinical language but just couched everything in normal language and normal experience”

Her story illustrates the road from “schizophrenic” to “voice-hearer” – from the clinical language of disease to the everyday language of emotions and experience. The stories of those diagnosed with schizophrenia can often be seen as disordered and incoherent, lacking any meaning. They are seen as having a defect. They are not entitled to a story. Hearing Voices Groups across the UK give people the opportunity to come together and share such stories in an open and trusting environment. The narrative contexts are the foundation blocks upon which these voices grow. It has been suggested that the inability to share stories about the self is part of the origins of psychopathology. We as healthcare professionals need to emphasize the point that hearing voices does not always lead to a life-long sentence of medication and institutionalization, as described eloquently by Eleanor Longden below:

If someone is reporting that they do not want their voices to stop then we must not automatically jump to the conclusion of poor insight. When the voices are distressing it is important to develop coping strategies that address this distress rather than the symptoms themselves. The problem is not the voice but the relationship one has with them. The goal of the Hearing Voices Network is for people to learn how to deal with their voices as one would deal with annoying roommates: with respect.

It has been argued that in Western medicine, doctors focus too much on a person hearing voices and not on what they say. Thus, anti-psychotics are seen as the answer with the devastating side effects described as a sacrifice for bringing someone back to the ‘norm.’ In order to understand the voices heard by our patients, we must first improve our knowledge of the cultural and social environments in which our patients reside and the practices and beliefs that our patients hold dear. If a clinician cannot take into account the cultural context of his or her patient, they cannot respond appropriately to their distress. And if a clinician is unable to respond appropriately to their patient’s distress, how can they ever hope to alleviate it?

“People with thought disorders do not keep a list of famous and successful people who share their problem. They can’t, because there is no such list. Comparatively few schizophrenics lead happy and productive lives; those who do aren’t in any hurry to tell the world about themselves.”
– Elyn Saks

 

References
1. Woods, A. et al. Interdisciplinary Approaches to the Phenomenology of Auditory Verbal Hallucinations. Schizophrenia Bulletin. 40:S246-S254
2. Laroi, F. et al. Culture and Hallucinations: Overview and Future Directions.Schizophrenia Bulletin. 40:S213-S220
3. Luhrmann, T.M. 2011. Hallucinations and Sensory Ovverides. Annual Review of Anthropology. 40:71-85
4. Woods, A. 2013. The voice-hearer. Journal of Mental Health. 22:263-270
5. Vaughan, S., Fowler, D. 2004. The distress experienced by voice hearers is associated with the perceived relationship between the voice hearer and the voice. British Journal of Clinical Psychology. 43:143-153
6. Ritsher, J.B., Lucksted, A., Otilingam, P.G., Grajales, M. 2004. Hearing Voices: Explanations and Implications. Psychiatric Rehabilitation Journal.27:219-227

Featured image:
Sound Waves: Loud Volume by Tess Watson

Categories
Disability Issues General Lifestyle

Deafness as a culture

“Try not to associate bodily defect with mental, my good friend, except for a solid reason”
– Charles Dickens, David Copperfield

What is the first thought that pops into your head when you think of the word deaf? Do you think of a disability? An inability to function in society? Do you think of loss? Of a deficiency in one of the most vital senses? Or do you think of group of people with similar values and beliefs, brought together through their experiences?

The medical model sees deafness as a disability, an impairment that needs to be fixed. A disability is defined in the Oxford Dictionary as a physical or mental condition that limits a person’s movements, senses or activities. In this sense, one could agree that deafness is considered a disability. However, deafness comes in two forms: deafness, indicating disability, and Deafness, indicating a culture.

Culture is defined as the ideas, customs, and social behaviors of a particular people or society. Deafness can therefore be viewed as a disability or an altered human experience. Deaf culture can include beliefs, behaviours, traditions, history, and values of the community. Deaf culture is an ethnocentric culture, based more upon sign language and relationships rather than a common native land – it is a global culture. Deaf Culture sees itself as a language minority than a disability.

 

Values and Beliefs

A culture tends to have its own beliefs and customs that are shared by its members, and deaf culture is no different. Deaf social protocol is based upon maintaining good visibility with others in the environment (Deaf Culture 2014).

Some examples of social customs within this culture include:

  • Rules of etiquette for getting attention and politely negotiating a signed environment
  • Keeping one another informed of what is going on in one’s environment – for example, letting someone know that one is going to the bathroom (in the hearing environment this is often not needed)

 

Arts and Literature

As with other cultures, deaf culture is rich in history and art. Storytelling also makes up a big part of the culture. Clayton Valli was an American deaf linguist who created works in ASL performed through handshape, movement and facial expression. One of his pieces of work, called Dandelion can be found here.

There is also a National Theatre of the Deaf in the USA that involves productions using ASL and spoken word. Their mission statement is to educate the public and open their eyes and ears to deaf culture (National Theatre of the Deaf 2014).

Media is a vital component in getting ones message heard, and many artistic groups throughout the world have increased awareness of deaf culture, helping to stem ignorance and begin a conversation about the experience of being deaf. Movies and TV programs also need to start promoting deafness not as a pathological condition but as a way of life, helping to banish this perception of disease and impairment.

 

Cochlear Implant Controversy

Cochlear implants are electronic devices that can be surgically implanted in patients who are deaf due to sensory hair cell damage. They can provide hearing in order to increase understanding of speech, and it is estimated that 324,000 people worldwide have received them as of 2012 (NIDCD 2013).
Although this may seem like an incredible treatment for those who have difficulty hearing, it also gives the suggestion that deafness is a condition that needs to be fixed. Some deaf people are not so much against the cochlear implant, than what it represents: a lack of respect for their culture. Indeed, some people have gone so far as to describe these devices as a means of cultural genocide.

It can be argued that deafness, as a cultural identity, should be encouraged to thrive and be supported in today’s diverse society. Others believe that every child should be given an equal chance in life. Through cochlear implants one will have opened the door to greater opportunities, such as better chances of finding employment, integrating with the community at large, and achieving a greater level of success. But why should a deviation from the norm result in fewer opportunities in the first place? Shouldn’t we be dealing with this inequality rather than trying to cover it?

Doctors may see a deaf child as missing something vital, being impaired and therefore not able to function in society. The word impairment implies fault; imagine the implications this can have on a child who is told they need to be fixed. Children should feel proud of who they are, not ashamed of what they were born with. What kind of impact would such thoughts have on their self-esteem? We all know how isolating it can feel to be different during childhood; why should we push these children further away from society?

Cochlear implants are seen as being oppressive: an illustration of our overreliance on the biomedical model. Instead of seeing a child as impaired, it would be more helpful to see the child as having a different natural language. We live in an age where we preach about acceptance and diversity. Shouldn’t we be embracing the deaf culture instead of annihilating it?

What does this mean about the future? If we find the cure for deafness tomorrow, does that eradicate an entire culture? Will there be people out there who will refuse to accept the cure for their child? And what implications will that have on the medical profession – can we accept this refusal? After all, every child deserves the best start in life. Where do we stand between respecting ones beliefs and doing the best for our patient?

 

Diversity

It has been suggested that deafness can be an isolating experience; you are part of a minority, cut off from the rest of the world. One could also argue that there are plenty of cultural minorities out there; despite English becoming more and more vital in our multicultural environment, there are many minor cultures out there who do not have English as their native tongue and are therefore cut off from a large part of civilization. Does that stop them from being a culture?

Diversity is a good thing: it is what makes society grow. It is needed for creativity, for quenching ignorance and progressing as a race. What is considered normal in this day and age? Having an illness gives you a new identity, a new way of looking at the world and translating your surroundings. What is considered illness to one person is considered normal to another. By embracing the different views on deafness, we embrace the diversity of mankind and what it has to offer.

 

References
Deaf Culture. 2014. Comparative chart: deaf and ethnic cultures [Accessed: 17thDecember 2014]
Deaf Cultural Centre. Arts & Culture [Accessed: 17th December 2014]
Jones, M.A. 2002. Deafness as Culture: A Psychosocial Perspective. Disability Studies Quarterly. 22:51-60
National Theatre of the Deaf. 2014. About the National Theatre of the Deaf [Accessed: 17th December 2014]

Featured image:
DEAF project #5 by Dario-Jacopo Lagana’