Campaigner argues bedroom tax victimises patients with mental health problems

A mental health campaigner has said that the government’s bedroom tax is victimising patients with mental health problems

On Monday, May 19th, 2014  Laura Matthews posted for Support Solutions Blog:

Pam Jenkinson, president of Wokingham Mental Health Association in Berkshire, is currently disputing rules that deny people with mental health problems the space that allows a carer to stay with them overnight.

Last week Mrs Jenkinson represented a woman suffering from depression, anxiety and anorexia at an unsuccessful appeal against the bedroom tax last week, reports 24dash.

The social housing tenant has fallen into arrears by £845 as she was deemed by the local authority to be under-occupying her two-bedroom flat. If she had qualified for the higher rate of disability living allowance she would have been exempt for the bedroom tax. However, she only qualified for the middle rate of DLA and consequently, she was hit with the tax and lost 14% of her weekly housing benefit.

Mrs Jenkinson said: “I believe a person qualifying for the high rate does not require a second bedroom where their carer can sleep overnight, because a person needing a lot of care has to have a waking carer in the same room in order to receive the frequent care necessary. Such people may well require extra space in which to store oxygen cylinders, wheelchairs, dialysis equipment but it is actually people like this lady who need a second bedroom so they can get day care and night care, from time to time, as needed. The mentally ill do not slot into the simplistic pattern of physical handicap. Those who make the rules don’t seem to have a clue about mental illness, although it is so terribly common. It is so easy to make a ruling if someone is in a wheelchair because you can see the disability.”

Mrs Jenkinson is currently applying for the higher rate of DLA for the bedroom tax victim.

Post comments on this Support Solutions Blog article to: @suppsolutions.  For more, follow this link.

 

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A role for football in mental health: the Coping Through Football project

Sonia Smith: Project Coordinator for Coping Through Football – pic from http://www.copingthroughfootball.org/

 

The Psychiatrist (2012), 36, 290-293:

  • Received August 11, 2011. , Revision received April 23, 2012., Accepted May 9, 2012.

  1. Oliver J. Mason1,2 and 
  2. Rebecca Holt1

Author Affiliations

  1. University College London
  2. North East London Foundation NHS Trust

Author Notes

  • Oliver J. Mason is a senior lecturer at the Research Department of Clinical, Educational and Health Psychology at University College London, and Deputy Director of Research and Development, North East London NHS Foundation Trust. Rebecca Holt is a clinical psychologist at the Research Department of Clinical, Educational and Health Psychology at University College London, UK.
  1. Correspondence to Oliver J. Mason (o.mason@ucl.ac.uk)
  • Declaration of interest None.

Abstract

Aims and method Coping Through Football aims to improve well-being and reduce social isolation for younger people with severe mental illness in a deprived area of North East London. Interviews were conducted with 12 service users, 5 referrers and 2 coaches to obtain their views of the project’s implications for health and well-being, quality of life and social/community relationships. A qualitative approach was used to derive themes from interview transcripts using some of the tools of grounded theory.

Results Themes included: identifying with past self; service with a difference: opening up the social world; safety; empowerment; and feeling good. Coping Through Football was seen by stakeholders as leading to increased well-being and social opportunities within a safe and understanding environment.

Clinical implications For many service users the football project played a key role in their recovery of personal and social roles. Social and community-based mental health projects benefit greatly from active community collaboration, in this case a professional football club and several non-statutory sport/leisure bodies.

Growing evidence supports the use of physical activity interventions across a range of mental health problems;1 and has led to recommendations that exercise programmes should be an integral part of their management.2,3 How such interventions effect symptomatic and lifestyle change has not been extensively studied. Clinicians value empirical evidence about who is helped and how when making choices about patient care. Semi-structured qualitative interviewing of clinical psychologists about their perceptions of exercise4 revealed that although it is favoured as a lifestyle option, the lack of an explanation for clinical change reduced their willingness to consider it as a treatment. Quantitative studies have suggested a variety of physiological mechanisms as well as psychological factors such as self-efficacy, distraction and self-esteem playing a part. As an alternative to quantitative studies, Mutrie5 has suggested that qualitative methods may ‘hold the key to a better understanding of the mechanisms underlying the effect of exercise on life quality’ (p. 307). The current study applied qualitative methods to explore how one physical activity intervention based on football may lead to change for service users with severe/enduring mental health difficulties.

Coping Through Football (CTF) is a multi-agency collaboration between an east London professional football club, Waltham Forest Primary Care Trust (public health body), North East London NHS Foundation Trust (public health body), London Playing Fields Foundation (London charity), Capital Volunteering (London charity) and Sport England (national charity). The project was first conceived by the London Playing Fields Foundation, who initially liaised with the football club’s community sports programme and local National Health Service (NHS) bodies. It was launched in May 2007 with the aim of improving mental health service users’ physical and mental health, with additional emphasis from the start on improving social inclusion by enabling ‘exit routes’ into social and occupational activities based in the community. We aimed to understand service users’, referrers’ and professional coaches’ views of the project’s positive and negative implications for mental and physical health, quality of life and social and community relationships.

To read the whole of the study, follow this link

UPDATE: “Groundbreaking mental health programme continues excellent work” – Leyton Orient Football Club website

Why Do We Say That Mental Health Detention is Discrimination?

Tina Minkowitz, Esq. writes for Mad in America:

 

The disability community, including users and survivors of psychiatry, has sent a letter (drafted and circulated by WNUSP) to the UN Human Rights Committee urging that treaty monitoring body to follow the Committee on the Rights of Persons with Disabilities in prohibiting all mental health detention.  The signatories came from all regions of the world and include user/survivor organizations, disability organizations, other human rights organizations and individual experts.  The Special Rapporteur on Disability sent his own statement elaborating this point, and the organization Autistic Minority International has also submitted an excellent paper.  All these submissions can be found on the website of the Human Rights Committee.

Since our letter is quite technical in pointing out the divergence of the Human Rights Committee’s position from that of the CRPD, which is a higher standard of human rights protection, I would like to bring out some additional points that may be helpful in our advocacy.

Why Do We Say That Mental Health Detention is Discrimination, and Why is it Prohibited Under the CRPD?  

Detention in the mental health context is discrimination because the threshold criterion for such detention is the existence of an actual or perceived disability as evidenced by a psychiatric diagnosis.  Indeed, UN standards in force prior to the CRPD, such as the Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care (MI Principles), permitted mental health detention only of individuals who are so diagnosed according to international standards.  This criterion that is similarly found in mental health legislation throughout the world exposes mental health detention per se as a discriminatory detention regime that is contrary to the Convention on the Rights of Persons with Disabilities.

Mental health detention cannot be disability-neutral in theory or in practice.  Its raison-d’être is to confine people with psychosocial disabilities.  The individuals so confined are subjected to a regime of medical supervision, as well as to medical and psychological interventions without their free and informed consent.  Medical personnel have a decisive influence in determining how long the person remains under detention, according to medical opinion about the person’s behavior and decision-making skills.   This represents a medical model approach to psychosocial disability, which is contrary to the CRPD and in particular contrary to Article 12 as explained in General Comment No. 1 of the Committee on the Rights of Persons with Disabilities.

People who experience difficulties in living that are labeled as madness or mental illness, or whose behavior and self-expression are perceived as such by others, are people with disabilities under the CRPD and under the earlier non-binding Standard Rules for the Equalization of Opportunities of Persons with Disabilities.  It is untenable to claim that a mental health detention regime, which exclusively targets such individuals for deprivation of liberty and medical interventions against the person’s will, is anything other than discrimination.

Mental health laws typically include criteria in addition to the existence of a psychiatric diagnosis, in particular a forecast that the person may harm oneself or others.  It is important to underline that this is a secondary criterion, applied only to individuals who have been labeled with a psychiatric diagnosis.  Neither the international standards in force prior to the CRPD nor any domestic mental health legislation would countenance the detention in mental health facilities of any individual who is not labeled with a psychiatric diagnosis, even if there is reason to believe that the person may harm oneself or others.  Police and the criminal justice system are the usual mechanism to deal with threats to others; if they are not adequate the society needs to debate the balance of public safety and individual freedoms and develop more effective measures that do not discriminate based on disability.  Danger to oneself is addressed either by laws that apply to the entire population (such as laws requiring the use of seatbelts) or by harm-reduction campaigns that promote safer behaviors while respecting individual autonomy…

To read the rest of this article, follow this link

 

Welfare reforms “impacting mental health”, says charity

98 per cent say their mental health has suffered

Tom Freeman wrote for Holyrood in 14/04/2014:

All but one in fifty mental health service users in receipt of benefits have suffered increased stress and anxiety as a result of welfare reforms, a new report has revealed.

According to ‘Worried Sick’, published by the Scottish Association for Mental Health (SAMH), 98 per cent faced such effects amid changes being pursued by the Coalition government.

Worried Sick: Experiences of Poverty and Mental Health across Scotland - SAMH

Conducted in November and December, the survey also found that 78 per cent saw their income fall, while 57 per cent have been affected by the Bedroom Tax.

As well as additional mental health and emotional help, there were six incidents in which SAMH staff had to carry out suicide interventions directly related to welfare reform issues.

Billy Watson, chief executive of SAMH, said: “Recent welfare reforms concern us, as many people with mental health problems are simply too unwell to work, leaving them reliant on welfare support while they recover.

“Eighty per cent of SAMH service staff have said they are providing increasing levels of mental health and emotional support, including suicide interventions, as a result of the impact of these welfare reforms.”

One respondent to the survey from Glasgow said: “If you’re no feeding yourself properly, you start to get restless. It’s about energy. Depression is like you’re in a swimming pool and all your emotions and all your feelings are a beach ball and you’re pushing it down.”

The findings follow evidence given at the Scottish Parliament by GPs working in the most deprived areas of the country who said mental health issues are closely associated with the physical ill health and social problems that affect many people in such areas.

To finish reading this article, follow this link

History of Madness – An Infographic

Infographic and following summary taken from http://www.bestcounselingdegrees.net/madness/ :

 

A HISTORY OF MADNESS

People are crazy, and always have been. But the ways in which we’ve dealt with mental illness has drastically changed over time.

ANCIENT GREECE

Through Antiquity, many thought that mental disorders came from the gods. Whether divine insight, or retribution, supernatural meddling was a fall-back explanation for much that was inexplicable.

Recognized illnesses:
Rage
Mania
Psychoses(delusions, delirium, hallucinations)
Epilepsy

Unrecognized illnesses:
Neuroses (depression, anxiety)

Categorization:
Physical, not mental afflictions

Treatments:
Banishment
Restraints
Counseling

Important Figures

The school of Hippocrates, 5th century B.C.:
Epilepsy is described as not being sacred, and instead explained by physiological phenomena.

Socrates, The RepubliC,380 B.C.:
“The offspring of the inferior, or of the better when they chance to be deformed, will be put awya in some mysterious, unknown place, as they should be.”
Socrates, however, also considered the positive aspects of madness in lovers, poetic inspiration, prophesying, and mystical rituals.

Galen, Greek physician, 129 A.D.:
Penned the theory of the humours (bodily fluids) in which he sought to explain some mental illnesses.

ANCIENT ROME

Romans absorbed many Greek notions of mental illness, including the humoreal theory, and the belief that mental afflictions were the curse or blessing of the gods (or later, the Christian God).

Important Figures

Asclepiades, 40 A.D.:
An advocate of humane treatments for the insane through diet, exercise, and bathing.

Cicero (106-43 BC)
Wrote a questionnaire remarkably similar to today’s psychiatric history and mental state examination, detailing appearance, speech, and significant life events. [7]

Celsus De Medicina, 50 A.D.: (Unfortunately, Celcus’ treatments became more mainstream in later Rome).
A Roman encyclopaedist who detailed therapy, bloodletting, talking therapy, exorcisms, and even restraints and “tortures” as solutions to mental illness.

MIDDLE AGES

Treatment of madness in Europe was thought of in religious terms, but the Middle Ages were also the origin of both hospitals and asylums.

History of Madness

11th century: Ancient Greek texts preserved in the Islamic world are translated into latin. Giving the basis for medical universities in the 12 century.
1100 A.D.: An asylum opens in Metz, France.
1290: De Praerogitiva Regis grants the land of natural fools to the King.
1310: German madhouse at Elbing created.
1371: Royal license given to chaplain Robert Denton to use his house in London as a mental hospital.
1494: The Ship of Fools, a book written by theologian Sebastian Brant, details the shipping off a the insane to ride on cargo ships through the canals of Europe and overseas.
Epileptics were regarded as demoniacs, and epilepsy was thought to be contagious. [6]

In the Islamic World

From early days, Muslims have had sympathetic attitudes towards the mentally ill as dictated in the Koran. Through Greek texts preserved in the Islamic world, Greek concepts of mental illness persisted throughout he middle ages.

Notable Achievements:
750 A.D. first hospital build in Damascus
873 A.D. Hospital opened in Cairo

Mental Hospitals built:
Damascus, 800
Aleppo, 1270
Kaladun, 1283
Cairo, 1304
Fez, 1500

RENAISSANCE

The renaissance cut both ways, increased medical knowledge and religious fervor coupled to both persecute the insane as witches, and provide a greater sense of sympathy for the unfortunately afflicted.

1518: the Royal College of Physicians created. Controlled who practiced as physicians in London to protect the public.
1520:Paracelsus, a German doctor, writes the book Diseases which lead to a Loss of Reason claiming mental illness is not from spirits, but of natural causes.
1592: Various degrees of insanity discussed in a trial for conspiracy to kill the king.
1563:Johann Weyer, author of a book claiming madness is the result of natural causes, not demonic possession is labeled a sorcerer.[7]

ENLIGHTENMENT

The enlightenment saw some regulation of mental hospitals, a shift away from religious thought about the insane, but still largely bad horrible conditions for the insane.

1660′s: Rich patrons pay to tour and watch the insane at Bedlam.
1667: New Bethlam (Bedlam) mental hospital opens after the great fire of London. [# image for the statues at the front, one called melancholia, one raving madness, at citation [8]]
1670′s: Earliest private madhouses in England. Laws to redress wrongful imprisonment in place.
1690: John Locke notes that there is a degree of madness in almost everyone. Madness is the inability to let reason sort out mad ideas.
1735: A Rake’s Progress published. Stages: 1.) Sudden wealth, 2. French Manners, 3. A Brothel, 4. escapes arrest,5. marries for money,6. gambles, 7. a debtors’ prison, 8. Bedlam [9]
1758: The very rich confined mentally ill family members in single person mad houses, at least partially for secrecy. As the British Royal Family did in 1788, 1801, 1811, and 1916.
1789: Vincenzo Chiarugi, superintendent of a Florentine mental hospital introduced for patience hygiene, recreation, work opportunities, and minimal restraints.
1789:Jean-Baptiste Pussin, manager of Parisian mental hospital forbade beating of patients.
1790: The French Revolution freed all inmates at madhouses to be reexamined, and only if they were truly mad, readmitted.
1794: French physician Philippe Pinel advocated treating patients with kindness and patience, rather than cruelty and violence.

THE 19TH CENTURY

1800: The 1800 Criminal Lunatics Act placed the criminally insane, particularly those who threatened the king in custody. By the end of the century there were 74,000 people in custody.
1810: Suicide ruled not a crime in the French Penal Code of 1810.
1823: Potentially the first lectures on modern psychiatry.
1824: Phrenology, the study of the shape of one’s head to determine the qualities of one’s brain, was begun.
1828: Commission formed to control London’s madhouses.
1838: French law passed mandating the housing of the insane at government expense.
1840: From the 1840′s on, American activist Dorothea Dix lobbied for the creation of 32 state psychiatric hospitals.[10]
1856: Daniel Dolly, a patient at a British asylum died after a treatment of a 600 gallon cold-water shower over 28 minutes.
1860′s: Social Darwinist belief that insanity is the end product of an incurable degenerative disease in a victim’s inherited biology flourishes.
1863: Patients moved, Bethlam becomes asylum for the “superior class.”
1870: The journal Brain first published.
1882: Frederick Myers publishes thoughts on levels of consciousness and unconsciousness (the subliminal self).
1890: the 1890 Lunacy Act required court orders for private patients to be detained against their will, and restricted private asylums.

THE 1900′S

The 1900′s were characterized (through the developed world) with the increase of institutionalization through the first half of the century, then the deinstitutionalization as alternative therapies and drugs were created.

Total inmates:
560,000 in the 1950s to 130,000 by 1980
State psychiatric beds per 100,000:
1955: 339
2000: 22

Citations:

  1. http://studymore.org.uk/mhhtim.htm
  2. http://www.theatlantic.com/health/archive/2014/01/diagnosing-mental-illness-in-ancient-greece-and-rome/282856/
  3. http://en.wikipedia.org/wiki/History_of_mental_disorders#Ancient_Greece_and_Rome
  4. http://en.wikipedia.org/wiki/Aulus_Cornelius_Celsus
  5. http://en.wikipedia.org/wiki/Asclepiades_of_Bithynia
  6. http://onlinelibrary.wiley.com/doi/10.1046/j.1528-1157.44.s.6.2.x/pdf
  7. http://www.psychologytoday.com/blog/hide-and-seek/201206/history-madness
  8. http://en.wikipedia.org/wiki/File:Melancholia_and_Mania_by_Caius_Gabriel_Cibber_c._1676._Engraving_by_C._Warren_n.d..JPG
  9. http://en.wikipedia.org/wiki/A_Rake%27s_Progress
  10. http://www.uniteforsight.org/mental-health/module2

“Discrimination associated with mental health woes in black teens” – AAP News

Carla Kemp, Senior Editor of The American Academy of Pediatrics News writes:

Discrimination associated with mental health woes in black teens

Researchers find racism a common ‘toxic stressor’ among African-American, Afro-Caribbean youth

VANCOUVER, BRITISH COLUMBIA – The vast majority of African-American and Afro-Caribbean youth face discrimination, and these experiences are associated with an increased risk of mental health problems, according to a study to be presented Saturday, May 3, at the Pediatric Academic Societies (PAS) annual meeting in Vancouver, British Columbia, Canada.

“Sixty years after Brown vs. Board of Education, racism remains a toxic stressor commonly experienced by youth of color,” said lead author Lee M. Pachter, D.O., FAAP. “The fact that these experiences are encountered during adolescence — a critically sensitive period for identity development — is of great concern, as is our finding of slightly higher rates of depression, anxiety and social phobias in those youth who have more experiences with discrimination.”

The researchers analyzed data from the National Survey of American Life, which examines racial, ethnic and cultural influences on the mental health of African-Americans and Afro-Caribbeans (blacks living in the United States who are of Caribbean descent). Interviews were conducted with a nationally representative sample of 1,170 adolescents (1,017 African-Americans and 137 Afro-Caribbeans) ages 13-17 years.

“Our study looked at the relationships between perceived racial discrimination (racism) and various mental health issues. We wanted to see if African-American and Afro-Caribbean teenagers who experienced racial discrimination have higher rates of depression, anxiety or social phobia,” said Dr. Pachter, professor of pediatrics at Drexel University College of Medicine and chief of general pediatrics at St. Christopher’s Hospital for Children in Philadelphia.

This is one of the few studies that look at experiences of black youth of Caribbean ancestry and ethnicity separate from African-American youth, Dr. Pachter noted. Because of differences in culture, pre- and post-immigration experiences, and other factors, it is important to differentiate groups that generally are lumped together as ‘black’ in the same way that Latinos are separated into subgroups such as Mexican American, Puerto Rican, Cuban, etc.

Survey results showed that 85% of the adolescents experienced discrimination. During their lifetime, 6% experienced major depression, 17% suffered from anxiety and 13% had social phobia. In the year before they were surveyed, 4% of teens had major depression, and 14% experienced anxiety.

More experiences with discrimination was associated with a higher likelihood of major depression, anxiety disorder and social phobia during one’s lifetime, as well as major depression and anxiety in the 12 months before the survey was conducted. These associations were present for both African-Americans and Afro-Caribbeans, for males and females, and for younger and older teens.

Results also showed that increasing levels of racial discrimination had a greater effect on Afro-Caribbean youth, who experienced higher rates of anxiety than African-American teens.

“The challenge now is to identify interventions at the individual, family and community levels to lessen the mental health effects of racial discrimination while we as a society grapple with ways to eliminate it as a toxic stressor,” Dr. Pachter concluded.

For the full text of this study, go to this link

“Migration and mental illness” – Dinesh Bhugra and Peter Jones

Dinesh Bhugra and Peter Jones write for Advances in Psychiatric Treatment:

Human beings have moved from place to place since time immemorial. The reasons for and the duration of these migrations put extraordinary stress on individuals and their families. Such stress may not be related to an increase in mental illness for all conditions or to the same extent across all migrant groups. In this paper, we provide an overview of some observations in the field of migration and mental health, hypothesise why some individuals and groups are more vulnerable to psychiatric conditions, and consider the impact of migration experiences on provision of services and care.

Migration

Migration is the process of social change whereby an individual moves from one cultural setting to another for the purposes of settling down either permanently or for a prolonged period. Such a shift can be for any number of reasons, commonly economic, political or educational betterment. The process is inevitably stressful and stress can lead to mental illness.

The preparation the migrants undertake, their acceptance by the new host community and the process of migration itself are some of the macro-factors in the origin of mental disorders. The micro-factors include personality traits, psychological robustness, cultural identity, and the social support and acceptance of others in their own ethnic group.

Migration to the UK has had many peaks. In the 20th century there were several: the first was the refugee influx during and surrounding the Second World War; the second occurred in the 1960s, when able-bodied young men and women were recruited from the former colonies in order to fill jobs created by the belated expansion of the post-war economy. A decade later, following the upheaval in East Africa, a large number of individuals migrated with their families, en masse.

Migrants can be classified using several different criteria – such as legal definition. There needs to be a distinction between actual settlers and migrant workers. The reasons for migration as defined by Rack (1982) include both ‘push’ and ‘pull’ factors. Settlers, as well as political exiles, asylum seekers and refugees, may well have to deal with very stringent legal procedures, which will test their psychological stamina. If there are conditions akin to war, refugees may even face rougher times. Factors like language, communication and social networks will play a role in the processes of dealing with initial adversity, settling down and assimilation.

The migratory process can be seen as three stages. The first, pre-migration, is when the individuals decide to migrate and plan the move. The second involves the process of migration itself and the physical transition from one place to another, involving all the necessary psychological and social steps. The third stage, post-migration, is when the individuals deal with the social and cultural frameworks of the new society, learn new roles and become interested in transforming their group (see Fig. 1). Primary migrants may be followed by others. Once they have settled down and had children, the second generation is not a generation of migrants, but it will have some similar experiences in terms of cultural identity and stress.

Fig. 1

Fig. 1

Stages of migration

We must advise a note of caution here. Although we are using the terms ‘migrant’, ‘migration’ and ‘psychological disorders’, these do not explain the heterogeneity inherent within each setting. Not all migrants have the same experiences or even the same reasons for migration and certainly the new societies’ responses are not likely to be similar either.

We shall now review some of the key studies related to specific psychiatric conditions and highlight some key assessment and treatment strategies.

Schizophrenia

Ödegaard (1932) reported that migrant Norwegians to the USA had higher rates of schizophrenia (with a peak occurring 10–12 years post-migration). This study has been cited frequently as indicating that all migrant groups have high rates of schizophrenia. Sashidharan (1993) argues cogently that this model should not be applied to other ethnic minority groups in the UK without critical evaluation.

Several studies in the 1980s and 1990s showed that rates of schizophrenia were higher among migrant groups to the UK compared to native Whites (see Bhugra, 2000, for a review). Cochrane & Bal (1987) observed that migrants had higher rates of admission than the native population. Similar high rates of schizophrenia have been reported among the migrant populations from The Netherlands (Selten & Sijben, 1994). Whether rates reported are from admission or community, some common themes emerge. First, incidence of schizophrenia in the African–Caribbean population is 2.5–14.6 times higher than in the White population (Harrison et al, 19881997). Second, the rates among Asians are not as elevated and are not consistently high. King et al(1994) reported that the rates among Asians were no different from those in the White population from the same catchment area.

The key difference between these two studies was that, while King et alcollected their data from an area where population density of Asians was thinner, Bhugra et al (1997) collected data from the London Borough of Ealing where, in the Southall catchment area, Asians form 50% of the population.

A number of hypotheses may be put forward to explain these high rates, some of which are listed in Box 1 and examined below. Hypotheses 1–4 were postulated by Cochrane & Bal (1987); Hypothesis 6 is discussed in the section Ethnic density v. social isolation.

 Box 1.

Six hypotheses for the higher incidence of schizophrenia in migrant groups

  1. Sending countries have high rates of schizophrenia

  2. People with schizophrenia are predisposed to migrate

  3. Migration produces stress, which can initiate schizophrenia

  4. Migrants are misdiagnosed with schizophrenia

  5. Different symptom patterns are presented by migrants

  6. Increased population density of ethnic migrant groups can show elevated rates of schizophrenia

 

Hypothesis 1: Factors in countries of origin

For a considerable period it was believed that the countries from which the individuals had migrated had high rates of schizophrenia, thereby suggesting a biological vulnerability leading to the illness. Until the 1990s very few studies had looked at the rates in sending countries, especially the Caribbean. With the Determinants of Outcome in Severe Mental Disorders (DOSMD) study (Jablensky et al, 1992) and studies from Jamaica (Hickling & Rodgers-Johnson 1995), Trinidad (Bhugra et al, 1996) and Barbados (Mahy et al, 1999), it was observed that rates of narrow-definition schizophrenia were not elevated compared with populations who had migrated. This suggests that biological causation is less likely, although biological vulnerability to environmental exposures cannot entirely be ruled out. Biological factors such as neurodevelopmental abnormalities, pregnancy and birth complications, and genetic vulnerability have not been reported consistently as having different prevalence in ethnic groups.

Hypothesis 2: Predisposition to migrate

The process of ‘selective’ migration has been put forward as a plausible hypothesis to explain the high incidence rates of schizophrenia among migrants, in that more vulnerable people are more restless and rootless. This superficially attractive hypothesis cannot be supported, on several accounts. First, high rates of schizophrenia are found in second generation rather than original migrants. Bhugra et al (1997) reported significantly different rates among older Asian females who were not primary migrants, thereby making it less likely that illness had predisposed them to move. Second, the physical process of migration and dealing with official immigration procedures is such a difficult and stressful task that individuals with schizophrenia are unlikely to complete it. Third, if this were the case, rates would be high among all migrant groups, which they are clearly not.

Hypothesis 3: Migratory stress

The key question here is whether migration itself acts as a stressor and produces elevated rates of schizophrenia, or whether the stressors occur later. If it were a straightforward association then rates of common mental disorders will be elevated among all migrant groups, which is clearly not the case (see below). Furthermore, as Ödegaard (1932) had demonstrated, rates of schizophrenia were elevated more than 10–12 years after migration, thus making it less likely that the actual process of migration is contributory. The finding of raised rates in the second generation but not in the first also argues against this.

However, the stress and chronic difficulties of living in societies where racism is present both at individual and institutional levels may well contribute to ongoing distress. These factors may also interact with social class, poverty, poor social capital, unemployment and poor housing. For example, Bhugra et al (1997) showed that 80% of the African–Caribbeans in their sample of cases of first-onset schizophrenia were unemployed, compared with 40% of Whites and Asians. However, such differential rates of unemployment and high rates of schizophrenia among African–Caribbeans may not be causally related and the high rates of unemployment cannot be explained away by general unemployment only.

Hypothesis 4: Misdiagnosis

The notion that misdiagnosis alone can explain the high rates of schizophrenia among the African–Caribbeans has caught the public and professional imaginations. However, this belief cannot be true. If misdiagnosis is the sole explanation, why is it that Asians are not misdiagnosed as readily, bearing in mind language differences? By using standardised definitions and assessments, as well as operational criteria in research, researchers should be able to reduce any discrepancy in diagnosis. As the same criteria are used in the sending countries, it would be likely that patients in those countries are being misdiagnosed too, and if they are not, why not?

Hypothesis 5: Symptom patterns

A key hypothesis that has been excluded from Cochrane & Bal’s (1987) list is that of symptom patterns of schizophrenia. There is considerable evidence from DOSMD that there are indeed cultural differences between inception rates of narrow- and broad-definition schizophrenias (Jablensky et al, 1992). Rates of narrow-definition schizophrenia vary across cultures within a very narrow band. It is possible that these two subtypes of schizophrenia and different migrant groups show different increases in specific symptoms…

To continue reading the article, follow this link

“Don’t Call Me Crazy, Call Me Mad”- David Crepaz Keay

David Crepaz Keay is Head of Empowerment and Social Inclusion at the Mental Health Foundation and works to develop, deliver and evaluate things like service user involvement, carer involvement, peer support and self-management training.

David also has a truly unique perspective on mental health — he has lived with hearing voices since adolescence. His experiences have shaped his attitude to labels and in a compelling interview, he talks about seeking to reclaim the word ‘mad’

“Let’s Find Language More Inclusive Than the Phrase “Mentally Ill”!” – David Oaks

David Oaks, Director of MindFreedom International writes:

I simply ask in this essay:

  • How can we be more inclusive with our language in the mental health field?
  • How can we show those who have been marginalized by psychiatric labels that we are listening and welcoming?

This essay is not about being “politically correct.” What is “correct” changes with the winds and tides and individual.

This is a call to stop the use of the term “mentally ill” or “mental illness” and find replacements!

Here are some suggested alternatives:

  • Psychiatric survivor
  • Mental health consumer
  • User of mental health services
  • Person labeled with a psychiatric disability
  • Person labeled with psychosocial disability
  • Person with a psychosocial disability
  • Person diagnosed with a mental disorder
  • Person diagnosed with a psychiatric disorder
  • Person with a mental health history
  • Person with mental and emotional challenge(s)
  • Person with a psychiatric history
  • Psychiatrically-diagnosed
  • Person with mental health issues
  • Consumer/Survivor/eX-inmate (CSX)
  • Mental health client
  • Mental health peer
  • Person who has experienced the mental health system
  • Person with psychiatric vulnerabilities
  • Person with lived experience of mental health care
  • Person who identifies as a survivor of psychiatric atrocities
  • Psychiatrized
  • Neurodiverse
  • Upset
  • Distressed
  • In crisis
  • In despair
  • In ecstasy
  • Different
  • Overwhelmed
  • Extremely overwhelmed
  • Person in mental health care who is on the sharp end of the needle
  • Person experiencing severe and overwhelming mental and emotional problems [describe, such as “despair”]
  • Person our society considers to have very different and unusual behavior [describe, such as “not sleeping”]
  • I have a name, not a label! Insert Your Name Here [e.g. Jane Smith]
  • Person.
  • Citizen.
  • Human being! Period!
  • Etc.? Your creativity is welcome, add to this list!

This Essay is Not About Perfection!

These suggestions about language are not about finger-wagging or shaming anyone into “perfection”! Too much of our society is too harsh already!

I love word origins, and the root meaning of the word “perfect” is “finished.” Are we ever really finished with a living language?

In fact, can we ever perfectly describe reality, at all?

No!

The term “mentally ill” is very much a narrow medical model.

If you want to use that term about yourself that is one thing. But when anyone uses the phrase “mentally ill” about others, including me and other psychiatric survivors, the implication is that since an “illness” is the problem then a doctor ought to be part of the solution. “Mental illness” also says since the problem is like a materialistic physical illness, then perhaps the solution ought to be physical too, such as a chemical or drug or electricity.

Please note a subtlety here:

My call is not about opposing the medical model, or any other particular model.

My call is about opposing domination by any model in this complex field. My call is about opposingbullying in mental health care.

So let’s also drop the use of other words that tend to confine us in the dominant model. Let’s stop legitimating the use of words and phrases like “patient” and “chemical imbalance” and “biologically-based” and “symptom” and “brain disease” and “relapse” and all the rest of the medical terminology when we are speaking about those of us who have been labeled with a psychiatric disability.

By the way, have you been noticing a few “quotation marks”?

Since 1969 when the movement began, mad activists have questioned language. What some activists do to provide just a little bit of breathing room between us and mental health industry language, is the generous use of quotation marks.

For example, for decades some in our movement have changed this:

People with schizophrenia.

to this:

People with “schizophrenia.”

Quotation marks like this help the activist writer a bit, to show that it’s not the writer’s word, that he or she is just quoting someone else. But we want more than punctuation. Punctuation can disappear, such as when it is read aloud. Too many quote marks can also get a bit annoying, too, because after all shouldn’t the above be:

People “with” “schizophrenia.”

Because who is it who is claiming I “have” some illness, anyway? Relying on quote marks alone can make your text look a little strange!

So go ahead and use a few quote marks, but even better would be to change the wording itself, such as changing the above to:

People diagnosed with “schizophrenia.”

or even better

People labeled with “schizophrenia.”

The reason for that final suggestion, is that I’ve known activists such as Rae Unzicker who don’t even want to give legitimacy to this process by using the word diagnosis, a word which mean identifying an illness based on science and medicine. This is a bit of a fine point, so I tend to use diagnosis or label interchangeably, unless it’s about an individual who personally identifies himself or herself with a particular diagnosis.

Yes, this essay has gotten a little long for the Internet, but exploring the complexities of language – even if it takes a few extra words – is far better than just tagging people with a judgmental and harmful label!

History of Psychiatric Labeling: Do Not Brand Us.

While psychiatric institutions have been around for centuries, it’s really in the 1800’s that the huge institutions began.

A feminist anthropologist historian Ann Goldberg has looked into the real life stories of those who were locked up in an early big institution in the 1800’s, in Germany, in her provocatively-titled book Sex, Religion and the Making of Modern Madness. Essentially, her research seems to show we have been some of the people who have not “fit in” to a modernizing society, a society that has some major problems itself.

The emergence of the medical model as psychiatry’s dominant ideology has a fascinating history, such as in the 1800’s in England when “mad doctor” elites jostled with one another to create the early journals, regulations, associations, licensing, government funding and large institutions. The medical model was simply a kind of rallying flag to consolidate the power of the dominant psychiatrists.

The emerging medical model of the 1800’s was about setting boundaries for power, and it was not about science. After all, the main “medical model” during the rise of that ideology was phrenology, the study of bumps on the head, which even then was beginning to be discredited.

I highly recommend the superbly-researched book Masters of Bedlam by historian Andrew Scull et al. to understand how a few hundred elites in England in the 1800’s helped construct the medical model domination system we see today. Scull points out that one of the first, most influential books promoting a medical model of mental health in the 1800’s barely even mentioned that ‘flavor of the day,’ phrenology, which the author finally added as an afterthought in his dedication.

Ironically, today, psychiatry’s own official label bible, the Diagnostic and Statistical Manual, does not refer to the phrase “mental illnesses,” but to mental disorders. Even inside the DSM, which psychiatry generally believes albeit falsely to be scientific, they do not use the phrase “mentally ill” in diagnosing, so it is actually scientifically impossible, by psychiatry’s own standards, to be officially “diagnosed mentally ill.”

In May 2012, MindFreedom led a peaceful protest of 200 marching in front of the American Psychiatric Association Annual Meeting in Philadelphia, protesting the DSM and even ripping up our labels. You can see photos and videos here.

Words Matter, Especially When They Have the Force of Law.

Psychiatric diagnosis has a tremendous amount of undue power.

I was diagnosed schizophrenic and bipolar, and found myself under the catch-all label of psychosis. To admit one has been officially labeled psychotic is perhaps one of the deepest closets to come out of, because the discrimination against those with that “p-word” label is so immense.

I prefer to talk about “discrimination,” rather than “stigma,” because discrimination is something we can actually challenge and change, such as through legislation. The word stigma, of course, comes from “branded,” and implies that my identity as a psychiatrically-labeled person is inherently negative, which is not always the case.

I would rather ask, “Who is doing the branding?”

The pseudo-scientific aura around the composition and organization of the DSM is reminiscent of the book once used to “diagnose” witches, the infamous Malleus Maleficarum (Latin for “The Hammer of Witches”, or “Hexenhammer” in German).

Today, who benefits by seeing extreme or even mild mental and emotional problems as primarily a “biologically-based” issue? Those who primarily promote a narrow medical model approach — such as the pharmaceutical companies — benefit by a medical model language.

Certainly, in the long run, taking away the unfair legal power that a few hundred psychiatrists have in literally voting on what courts and legislatures consider “normal” is an important goal. USA psychiatrists are currently working behind closed doors on their fifth revision of the DSM, which has international implications. For years, despite our many requests, the organizers of early meetings on these revisions, such as the influential USA psychiatrist Dr. Darrell Regier, refused to open those doors, or to even respond to civil inquiries.

Illustrating the complexity of language, the APA has found itself terribly divided internally about this next edition, and therefore they’ve delayed publication at least a year, to 2013. The main editor of DSM-IV, Allen Frances, has denounced the APA’s work on DSM V. After public pressure, including by MFI, the APA opened up a bit, and has created a DSM 5 web site to gather public comments about its draft.

We want far more than input on a web site to the few hundred privileged professionals who literally vote on our labels.

In the long run, we must stop all “Psychiatrization Without Representation.”

In the short term, we can at least try to change the language we personally choose to use. I know many of my friends in our mad movement — including psychiatric survivors, dissident mental health professionals and authors — freely use the term “mentally ill,” because they think it’s more recognizable by the public. However, in the field of Intellectual disabilities, many groups now have campaigns to get rid of the frequently-used “R word.” And of course civil rights activists have largely effectively fought the “N word.” Frequency of word usage does not eliminate the pain that is caused, and does not make change hopeless.

This Call is About Valuing Inclusion, Diversity, Respect and Empowerment!

I understand that many people define themselves as “mentally ill,” and accept a medical model. If you do this, that is your choice. I respect you.

However, at this time, the “medical model” is dominant. The medical model has become a bully in the room. Language that somehow encourages that domination isn’t helpful to the nonviolent revolution in the mental health system we need, a nonviolent revolution of choice, empowerment, self-determination.

What about the many other people who define their problems from a social, psychological, spiritual or other point of view? And what about those who don’t see their differences as problems, just as differences, or even as qualities?

In fact, what about the subject of defamation? According to an attorney we work with, to falsely claim an individual is officially “mentally ill” with intent to harm them has been used in law schools as a classic example of defamation.

We’ve come up with some of the suggested alternatives listed at the start of this essay, using good old-fashioned plain English. Each phrase and word has difficulties of its own. There are many creative ways to address this. Perhaps you have some suggestions yourself, let us know.

I’ve heard that some feel that using alternatives to medical model language somehow diminishes the seriousness of people’s personal pain, that, for example, being diagnosed with “clinical depression” underlines the gravitas of a crisis better than, say, “sad.” But there are words in the English language more fierce than “sad.” How about, for example, “extreme and catastrophic life-threatening anguish”? That phrase has a lot more gravitas than any clinical language I’ve ever heard! (The origin of the word “clinical” by the way, is simply related to “bed.”)

So speaking of everyday English, what about slang words for us? As with any oppressed minorities, these words can hurt, and sometimes the words are meant to hurt.

After all, English is a living language that changes. Back when psychiatrist Loren Mosher created a model alternatives, “Soteria House,” the idea of a peer was just about anyone who did not have mental health training. In other words, a caring member of the general public was considered a “peer.” But more and more, we are hearing the term “peer” somehow become used as shorthand for “person who has used officially licensed mental health services.”

Some activists, including me, at certain times have sought to reclaim the words society has thrown our way. I realize others may not choose to ever use words like “mad” or “lunatic” or “crazy” or “bonkers” to describe themselves. We probably ought not use those colloquial terms in certain contexts, like arguing our rights in front of the United Nations or in a court hearing. But now and again, some of us like to have some fun and be outrageous, such as at MAD PRIDE events, where it is okay to be creative and reclaim language that has been used against us.

We even have a parade entry with the sign, “Crazy = Normal, Normal = Crazy.”

But this is us laughing with us, and with all of society, to further our goals. That’s different than someone exploiting us for their own private goals.

Speaking of laughter… Consider the stereotyped ‘crazy evil laugh’ one may see in a movie with, say, a mad doctor. You know, that “moo – hoo – hoo – hoo – ha – ha – ha!” laugh. Why is that considered inherently mad? Isn’t that sometimes the sound an extremely disenfranchised person makes who has suddenly discovered the tables have turned, and he or she is winning because of a cunning plan? Is that victory laugh really always evil?

In the right context, I love to recapture some of the words used about us. We do, after all, get a lot of the fun animals such as squirrely, crazy like a fox, bats in the belfry and loon.

When we have a mad potluck, I have been known to bring nuts, bananas and crackers in a cracked pot. Here at the MindFreedom office we have two whistles that make the sound of a loon, and a loon stuffed animal! I have hesitated at getting a cuckoo clock, since one never knows who might be on the phone when the clock strikes twelve.

When we gave an award to clown/physician Patch Adams on July 14, 2012 for his leadership in the IAACM, he asked that it not focus on his being a ‘psychiatric survivor,’ but for his proud ‘lunacy promotion.’

Madness and Change

I love it that the word origin of “mad” is essentially change, similar to the two letters “mo” in “motion” or “emotion.” You bet some of us want change, and often change is considered “mad.” Perhaps you’ve heard someone whisper about a mutual friend going through emotional turmoil, “She’s… changed…. she’s just not the same person.”

Questioning our language can lead to fascinating discussions about words related to madness.

For instance, the three words “stark raving mad” create one of the ultimate and undeniable descriptors of an individual considered psychotic. Word origins could translate that phrase into “staring intensely in extremely hungry rapid movement.” In other words, this state is similar to that intensely focused look a wild predatory animal like a wolf has in the final microsecond before landing on its rabbit lunch.

It’s revealing that our society has described that particular “extreme assertiveness,” which can be as natural as any scene in a documentary about lions, or any scene from Homer’s Iliad, as inherently always a sickness. In fact, couldn’t those words ‘staring in hungry pursuit’ sum up the ethic of our current consumer society? Have you ever reflected at just how ‘driven’ a driver on our crowded roads looks, hands held on the wheel in a kind of prayer? The drone of thousands of tires on highway seem to say one word to my imagination: “More… more… more….”

Once more we can glimpse that society does not always oppose a particular ‘altered state’; society may seek to monopolize the power of that altered state only for is own exclusive, so-called ‘normal’ purpose. Sanctioned “stark raving madness” for economic gain, to win a football game, or for an official military operation, have all become so widespread it is considered normal. When unsanctioned, those who tap into this particular state for good or for ill can be considered inherently out of bounds. Not all “stark raving madness” is good, but I know that breaking with what is called “normal” for the greater good may at times look like “stark raving madness.”

Moments of extreme assertiveness do not have to be inherently violent and destructive. MindFreedom has a policy of nonviolent action, but nonviolence can certainly include extreme assertiveness. Martin Luther King and Mahatma Gandhi often said that civil disobedience was not a form of passivity, but of soul force or satyagraha.

Rosa Parks, sitting on a bus in the segregated south and refusing to give up her seat, was not ‘passive.’ Her calm dignity that day was in fact ‘staring in hungry pursuit’ of justice, connected to a powerful movement.

Any discussion of the language of madness needs to include a mention of how Martin Luther King, Jr., in over ten of his speeches and essays, said he was proud to be psychologically “maladjusted.” It is highly recommended that everyone who cares about change in the mental health system become familiar with Martin Luther King’s use of this term “maladjusted.” For at least a decade, he said in a variety of ways, “Human salvation lies in the hands of the creatively maladjusted.” In fact, he even repeatedly said the world was in dire need of a new organization, the “International Association for the Advancement of Creative Maladjustment” (IAACM).

Take Back Mad Words!

I feel words such as “crazy” can actually be positive in certain contexts. Consider, “I’m crazy in love.” Isn’t the only real love, crazy love? Recall Apple’s early motto for their computers, “Insanely great.” The word origin for crazy is “cracked,” and in Japanese art the pottery with a beautiful imperfection has a special Wabi-Sabi value.

The problem with this kind of language begins when it becomes mainly attached to negativity. A newspaper editorial or journalist disparaging certain citizens as “lunatics” ought to be opposed.

To this day, when I give public speaking engageements, I ask people if they have heard of racism or sexism or classismor ablism. Obviously, most everyone has, and nearly all hands shoot up. But then I ask if anyone has heard of sanism,and few people have. Even some long-time activists in mental health say they’ve never heard of the word.

Our’s literally is an oppression that shall not be named!

(By the way, I know some good friends have used an equivalent term “mentalism.” However, it turns out mentalism is also a school of philosophy, as well as a type of magic. Attorney and professor Michael Perlin has championed the use of “sanism” instead.)

Whatever you call an oppression, the phenomenon of “Isms” is often caused by exaggerating real or imagined differences to such an extent that instead of celebrating diversity one creates an irrational chasm. To this day I am still exploring the depths of the chasm of “sanism.” and I have still not found its bottom.

And shouldn’t we expect “sanism” to be especially deep?

Humans differ by gender, age, racial heritage and religion. These differences, when distorted, have led to discrimination. But how do human beings tend to define themselves? When a typical person is asked to describe the difference between themselves and non-human animals, I can imagine he or she would say, “Humans are the rational animal. The thinking animal. The animal that can do math, fly a plane, engage in commerce.”

Since we humans typically define ourselves by our minds, then those who are considered fundamentally different in their minds can encounter a type of discrimination that is on a profoundly different level than other “isms.”

When major global organizations such as World Bank and World Health Organization have needed to study the impact of mental and emotional problems on society, they often use a measure that is called “days out of role.” This method of measurement may work fairly well for, say, automobile accidents. One can come up with a number of days people harmed by automobile accidents are not fulfilling their chosen role of worker, parent, student, etc., and then give that a monetary value. However, as we now know, mental and emotional differences and difficulties are far more complex than a car accident. It is revealing that the ultimate definition of a mental and emotional problem by these international bodies is when you are not fulfilling your “role” in the great system of commerce that is a dominant force in the world today.

Once more, we can learn a bit from word origins. The word origin for “role,” it is thought, came from the fact that actors in the 1600’s were handed a “roll” of paper with their script for being a character a play. In other words, one’s “role” is the part played by a person in life, as one dictionary puts it. Again, this may work for something as simple as measuring the impact of car accidents. But when it comes to measuring mental and emotional well being, shouldn’t we have a measure of the number of days in one’s life that one fulfills the role one has written for one’s self? How many days are we living the life of our dreams?

Is “Mental Health” Bias Lessening?

Sometimes I’m told that things are getting better, because so many people are “labeled.” There are celebrities and co-workers who candidly discuss their diagnosis of depression, anxiety, or attention deficit disorder. However, in some ways things are worse for one of the most serious diagnoses, “psychosis.” As I’ve noted, technically “psychosis” can include many of the people who are labeled schizophrenic and bipolar.

So you know those many young people being diagnosed “bipolar”? Well, they may want to know that many of them are also being diagnosed “psychotic,” a particularly-offensive label that can stick to them for life.

Imagine moving into a new house, and your neighbors discover you have a diagnosis of “psychotic.” You will probably discover that this label still carries a lot of power.

Ironically, though, the word origin of psychotic is simply “soul sickness.” And is there anyone who doubts that our society today has one heck of a lot of soul sickness?

One indication that the “medical model” approach is holding on is a simple and informal test. For nearly a decade, MindFreedom has done a Google search of the web site for NAMI, the National Alliance on Mental Illness, for their use of the phrase “biologically based” (in quotes).

While this is an unscientific study, I’m alarmed that in 2012, the number of references – reflected in the bar graph here – has skyrocketed four-fold from just two years ago.

MindFreedom periodically ‘charts’ how often NAMI uses the term “biologically based”; you can see details about this, with an enlargement of the above graph, by clicking here. 

Care to Go Deeper? Climate Crisis, Quantum Theory & More

If I may get a little “big picture” here, in the modern scientific field of “complexity theory” (also known as emergence theory, chaos theory, systems dynamics, etc.) life and the mind appear to be a phenomenon emerging from the edge between chaos and order, far from equilibrium. That is, our mind – and life itself – literally ‘plays itself out’ on the edge between chaos and order. What appears to be “stability” is often a dance on this edge.

I highly recommend the little book by Fritjof Capra called Web of Life for an elegant description of this enormous scientific revolution, that is replacing the old Newtonian view that life can be reduced to parts of a machine.

For me personally, the environmental movement has helped our “mad movement” a great deal. That is because in recent decades, environmental scientists have produced convincing evidence that what is called “normal” behavior in our society is leading to the destruction of our planetary ecosystem, and an untold number of species. In other words, the similarities between so-called “normal” people and so-called “mad” people may be far greater than the differences.

Of course, a teenager threatening suicide, for example, is in a terrible crisis and we as a society must provide humane, compassionate, and wise assistance on an urgent basis. However, we also need to remember that all of humanity — in its self-destructive adolescence — is far more similar to that suicidal teen than they are different. Sometimes realizing our commonalities can play a big role in providing empathy. In a way, one can see the label as “crazy,” as essentially saying that someone else’s behavior or thoughts are simply so non-understandable, so non-predictable, that they are beyond the realm of your imagining why they might do this.

A classic example is a person running screaming naked down the middle of the street. For many people that’s a very good example of “crazy.” That is, until they listen more closely and discover that this is a mother who is screaming about her burning home, and that her child is trapped inside.

As attorney Susan Stefan put it in a keynote address to the National Association for Rights Protection and Advocacy, perhaps our best response to the over-simplicity of the “chemical imbalance” theory of the mind is to respond, “We are more complex than that!” The psychiatric survivor movement has a special role to play, because there is no evidence of any “chemical imbalance” or physical difference.

Throughout the sciences, theories involving quantum theory, string theory, particle physics and more, are discovering that existence is far weirder than scientists ever imagined, and that no one truly has an absolute grip on reality. We apparently all need one another’s hearts and minds, together, to make even our best guess about ‘what is real’ – and even then, we know we are only making our best collective guess.

Lessons from Cross-Disability

All of these issues also apply even when there are significant and proven physical differences, such as for people who have experienced major brain trauma, such as from strokes or car accidents. Those who have sought recovery point out that over-labeling and over-medicalizing can often hurt their empowerment, which is a key value for true long-term recovery.

Many deep thinkers in the broader cross-disability movement, that includes people diagnosed with visible ‘physical’ disabilities, also wrestle with many of the same language questions raised here. In fact the prefix, “dis,” inherently is itself a negative. Some clever disabled folk are calling themselves “The Dis-Labeled.”

Famously, many people with hearing “differences” say they are not disabled, that because of their alternative-language skills they are their own special culture.

Many senior citizens resent being called disabled, even if they have a walker and a hearing aid, and prefer the term ‘senior citizen.’

And what of those missing legs – such as Olympian Oscar “Bladerunner” Pistorius – who have newer prostheses that allow them to run faster than many so-called “normal” person, such as ? In a flat-out race, who is now the “disabled”? There are many books and films on the rich topic of normality and disability in general.

One of the most revealing books on ‘normal’ is actually from the environmental movement. Tenured University of Oregon professor Kari Norgaard has studied a prosperous, well-educated town in Norway for a year, about why these ‘normal’ people, who seem fully aware of the climate crisis, are doing very little to address it. As I said above, is it truly ‘normal’ to be numb to one of the main issues of our day?

The point is we are not going to find perfect or correct or language.

Our “mad” social change movement has wrestled with language for decades, and there is no consensus. There may never be. This fascinating, frustrating, ongoing discussion is in fact the solution.

Diverse speculation is a wonderful antidote to the falsehood of certainty….

To finish reading this essay, follow this link

“Time to change the language we use about mental health” – Gary Nunn for The Guardian

Gary Nunn writes for The Guardian:

The world has moved on since the days of ‘Bonkers Bruno’ headlines, but we still need to mind our language

The front page of the Sun on 23 September 2003 covering Frank Bruno’s depression – early and late editions.

 

It’s political correctness gone mentally unstable. That’s right, you can’t say anything these days – and here’s yet another article telling us what language we can and can’t use. Cue eye-rolls and tuts.

Actually, I want to share with you my own journey into madness. That is, mental health and language – and the advice available about how we strike a balance between the “political correctness gone mad” brigade and those who prefer to communicate with a little more consideration.

We’ve all had a mental, mad or manic day at work. Frustration has driven us nuts or crazy. Affectionately, we may have referred to an eccentric friend as “bonkers” or “as mad as a box of frogs”. Some people might call a day of very changeable weather “schizophrenic”. The Black Eyed Peas invited us to “get retarded”. Mental health is so ingrained in our everyday vernacular, it’s interesting to me how we now unshackle meaning, intent and potential offence caused by reinforcing negative stereotypes. I spoke to Time to Change, England’s most ambitious campaign into ending discrimination surrounding mental health, for guidance.

After asking to be put in touch with a person with a mental health condition, I interviewed Susannah Wilson, an actor, who is living with bipolar II. In terms of striking that careful balance, she told me: “We’re faced with more and more censorship of words that have been deemed politically incorrect and we’re at risk of becoming a nation that is losing its freedom of speech. On the other hand, it’s just an excuse for the ignorant to remain ignorant if we continue to use language that can potentially harm others.”

I asked Susannah what she found offensive, and what she was relaxed about: “The word ‘mental’ was a common playground taunt when I was at school. The word ‘nutter’ was even used in a chocolate bar advert: ‘Oi, nutter! That bloke’s a nutter!’ I find these offensive now, having suffered illness myself, although I’ve rarely challenged the use of them because I would have had to reveal my illness and my fear was that those around me would censor themselves for my benefit.”

She added: “Changing language alone is only dealing with the stigma on a superficial level and not uncovering the causes of such language.”

Language, however, is powerful. Context, intention and knowing your audience count for a lot in everyday chats; the level of responsibility shifts up many notches when you’re a journalist. As Kate Nightingale, head of communications at Time to Change, told me: “The media is extremely powerful and is consumed by millions of people every day. Therefore, we would encourage journalists to recognise the influence they have when reporting on mental health so as not to reinforce damaging stereotypes or create sensationalist articles which can cause huge distress and offence to the one in four people who will experience mental health problems.”

To help, Time to Change – led by Rethink and Mind – has created a media advisory service which includes script advice for storylines featuring characters with mental health problems and their own “mind your language” section for journalists. Judged by these guidelines, the Guardian’s own style guide seems to be on the money. Nightingale says the Guardian has done “fantastic work for many years” in the area of mental health, including journalist Mary O’Hara’s work on the reporting of mental health issues, which won a Mind Media award. Mark Rice-Oxley’sGuardian piece about his mental health illness eloquently captured the inadequacy of language in reflecting such a serious condition: “They used to call it a nervous breakdown. Now it’s depression. Neither term is helpful. The former doesn’t come close to expressing the long list of symptoms that apply (insomnia, anxiety, dismal mood, panic, thoughts of suicide, loss of energy/weight/joy/libido/love). The latter is, if anything, worse, conjuring up misleading images of people staring through windows at drizzle.”

I must admit that I’m proud to write for a media title that listens and learns; my piece arguing that the Guardian should drop the insidiously stigmatising noun “homosexuals” from neutral reporting led to the style guide editor encouraging Guardian journalists to replace it with the more humanising (and less stuffy) “gay people”. The noun “homosexuals” echoes the hostile clinical language of an era – which finally ended in 1992 – when homosexuality was considered to be a mental illness that could be “cured”.

What of media outlets that have misused language about mental health?  The Sun’s infamous headline “BONKERS BRUNO LOCKED UP” is described by Nightingale as a “milestone moment” owing to the overwhelming public outcry over its decision to put alliteration before consideration when reporting boxer Frank Bruno’s mental health problems. It has slipped up since, too – last year a Sun headline screamed “1,200 KILLED BY MENTAL PATIENTS”. It was misleading and unfair. Following Time to Change’s complaint, a clarification was printed and the team continues to have “constructive” meetings with the paper’s editor.

Reporting of suicide is another sensitive subject. The Australian media’s reporting of the TV presenter Charlotte Dawson’s suicide this week (following social media trolls encouraging her to kill herself) has opened up similar discussions to the UK’s reporting of the issue. The Australian Psychological Society says the C-word – ”committing” suicide – is loaded with archaic religious and criminal baggage. It also advises against “successful suicide” – something that really should be an oxymoron. On the other hand, some media neglecting to mention at all that Dawson was believed to have taken her own life has also been criticised. News outlets – fearful of copycat suicides – have perhaps trodden a bit too carefully and the opportunity to discuss this important issue has been wasted.

If you want to be thoughtful in everyday conversation, what does Time to Change recommend? Nightingale says: “The meaning of words can change over time. ‘Manic’ and ‘mad’ are frequently used in informal conversations and, while we accept they have various meanings, they can also cause offence. Using words like ‘psycho’, ‘nutter’, ‘schizo’ or ‘loony’ to describe someone with mental health problem is certainly offensive and unacceptable. ‘Schizophrenic’ is often misused to mean a split personality, or something that’s very changeable, and usage in everyday speech contributes to the misunderstanding and stigma that there is around this mental health problem in particular, so we would advise against that.”

In which case, from now on, British weather is wildly changeable, four seasons in a day – or just bloody awful.

Nightingale is keen to highlight that discussing mental health is important; we don’t want to discourage those discussions by becoming too precious or particular about the terms used. ‘Mad,’ ‘insane’ and ‘crazy’ can, of course, also be positive adjectives when describing falling in love, a particularly buzzy city or wild party. Indeed, Bloomsbury’s new fourth edition of Tony Thorne’s Dictionary of Contemporary Slang lists the polar opposite meanings of “mental”: first as “mentally ill, subnormal” and secondly as “exciting, dynamic, excellent”.

Mad Pride, held each year on Bastille Day (because the people released from the Bastille were deemed “insane”) seeks to “reclaim terms like ‘mad’, ‘nutter’, and ‘psycho’ from misuse, such as in tabloid newspapers, celebrate mental health survivor culture and explore the positives of madness”. Susannah Wilson is keen to highlight the positives: “My illness has taught me compassion and empathy for others who are suffering in ways I wouldn’t perhaps have achieved. It has also tested my strength and courage allowed me to make peace with the parts of myself I’ve disliked.”

Words often change meaning. Looking at how campaigners have approached this reveals differences. Some words are ditched, others defended. The Spastics Society rebranded in 1994: a longlist of 400 names was shortened to 19 and Scope was finally chosen. The charity was finding the debate around the word “spastic” a distraction. Some older people were “proud to be spastic” but, ultimately, it was costing the charity precious donations.

By contrast, Stonewall continues to defend the corruption of the word “gay” into a synonym for anything inadequate, its most recent campaign playing on linguistic inaccuracy by inviting us to “spot the two common mistakes” in the sentence “Your so gay.” In such a sense, “gay” has, disturbingly, travelled in the opposite direction to “mental” – the newer colloquial use of the former becoming negatively loaded, whereas the latter has a more positive street use…

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