GIVING VOICE TO THE VOID.by Karla Mila-Schaaf
Last Updated on Monday, 14 April 2014 22:24
The following article was given by Karla Mila-Schaaf at the Building bridges Conference and is reproduced here with her permission.
In order to be heard, and for stories to be successful, it depends on there being a community who can hear them (see Plummer, 1995). Stories and narratives depend upon communities that can create the conditions for them to be heard.
So I thank you for being that audience, for being that community of support, who is ready and waiting to receive this story.
There are some stories which may have been waiting in the wings, for their time, for their voice, and for their audience. This is one of those stories. It’s not the easiest story to tell.
For the longest time I’ve had my back to this story. As if it was my own sun.
You know what they say: “Never look directly into the sun, or you might go blind.”
It is the kind of sun that makes people blink awkwardly. Light aches in their eyes and you’d wish for a cloud, any cloud. They are not the easiest stories to tell, or to hear, and perhaps more than anything, they are not the easiest stories to create spaces for, to create spaces for both the telling and the listening.
I acknowledge the work of so many of you out there, who work everyday (many of you) to create the conditions for these stories to be heard with dignity; who clear the spaces for these healing and burning stories to be told.
Practical Information for People Who Hear Voices
Last Updated on Monday, 14 April 2014 22:41
The following has been reproduced from www.intervoiceonline.org
Voice hearers can find themselves experiencing an overwhelming world and their power of reason may be virtually extinguished making it impossible to go about their lives. Open discussion with others offers a means of helping you to accept your voices.
Communication between voice hearers gives you the opportunity to share experiences and to learn from one another. This can be achieved by joining or setting up self help groups, such as those established by the Hearing Voices Network.
Voice hearers say it is important to discuss voices, in the process; it is possible to learn to recognise their games and tricks, as well as their pleasant aspects, and to identify patterns which are specific to given situations. This can help you to be better prepared for future onset of voices. Voice hearers may think they are alone in hearing voices. This makes the experience unpleasant and produces feelings of shame or the fear of going mad. Anxiety often leads to the avoidance of situations which might trigger the hearing of voices, and this seriously blocks self development. Anxiety severely restricts freedom of movement, and strategies of avoidance often seem to exacerbate the problem.
Voice hearers seek explanations to account for their voices. A personal approach to understanding can be helpful and there are many disparate perspectives used by voice hearers. An explanatory theory is essential to the development of a coping strategy. Unless some meaning is attributed to the voices, it is difficult to begin to organise a relationship with them in order to reduce anxiety. Perspectives which discourage voice hearers from seeking mastery of the voices tend to yield the least positive results.
What is it like to Hear Voices?
Last Updated on Thursday, 10 April 2014 19:59
The following article was kindly provided by www.intervoiceonline.org
It is difficult to explain what it is like to hear "voices", particularly if you have never heard voices yourself. However, the experience of hearing voices is not as alien an experience as it is generally thought to be.
Firstly, it may be the same as hearing a voice in the normal way through your ears, the difference being that the "voice" has no physical cause - but like normal voices, there is variety and every experience has its differences. You may think you have never experienced this, but are you sure? You may have had the experience of hearing someone call your name only to find that there is no one there. Indeed, research shows that especially for people recently bereaved, it is not an uncommon experience to hear the voice of the recently deceased person.
Hearing Voices Network on the DSM 5
Last Updated on Thursday, 10 April 2014 20:00
Here is a great article from Hearing Voices Network Uks page I have written it out here . They are asking for comments on their page.
DSM 5, the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders – often referred to as the ‘psychiatric bible’ – has now been released in the wake of huge controversy and debate. The alternative classification system, ICD, is based on exactly the same principles. Some of the world’s most eminent psychiatrists have spoken out about the current system.
The former director of the US’s largest funding body for mental health research, the NIMH, recently described DSM as ‘totally wrong, an absolute nightmare’. The chair of the DSM 5 committee admitted that ‘We have been telling patients for several decades’ that the biological causes of distress are about to be discovered, but ‘We’re still waiting.’ Another senior psychiatrist said, ‘Patients deserve better.’ In the UK, clinical psychologists have challenged the use of diagnosis and the ‘illness’ model.
The Hearing Voices Network, alongside many of our professional allies in psychology and psychiatry, has serious concerns about the way we currently understand, categorise and respond to mental distress . We also recognise the confusion that can be caused when accepted facts, often presented to service users as truths, are challenged.
We believe that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system. People who use services are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This statement outlines the main issues, as we see them, and invites people on the receiving end of a diagnosis to have a voice in this debate.
Psychiatric diagnoses are scientifically unsound:
- No objective tests: Unlike most fields of medicine, psychiatric diagnoses are not provided on the basis of objective tests or measures.
- They’re artificial: There is strong evidence that diagnoses do not represent meaningful clusters of problems or link to known biological abnormalities. Diagnoses are voted into existence by committee, representing opinion rather than scientific fact.
- Drug company involvement: There is growing concern that new diagnoses are both suggested and shaped by (initiated by) drug company funded research and interests.
- Unreliable: The diagnosis you receive from a psychiatrist is based on their opinion about what you have told them. Different psychiatrists often have different opinions about the same person, leading to multiple diagnoses. Two people with the same diagnosis may have nothing in common.
- Limited explanation: Whilst diagnosis seems to provide an explanation for people’s problems, this isn’t the case. People are told they have ‘schizophrenia’ on the basis of their unusual thoughts, experiences, feelings & behaviour. If they then ask why they are having these unusual experiences, they are told it is because they have ‘schizophrenia’. This circular argument explains nothing.
- Limited use: The issues raised above mean that diagnoses are a flawed basis for deciding on treatment, predicting outcomes and carrying out research.
Psychiatric diagnoses have damaging consequences:
- Misses the point: Increasing evidence demonstrates mental distress is an understandable reaction to adversity, including: bereavement, loss, poverty, discrimination, trauma, abuse and victimisation. By focusing on ‘what’s wrong with you’, diagnoses can stop professionals asking ‘what’s happened to you’.
- Missed opportunity: Psychiatric diagnoses can stop people addressing the links between social and economic policy and mental distress. Essential funds are used in the ongoing futile search for genetic markers instead of addressing the societal issues we know lead to mental health problems.
- Disempowers: Psychiatric diagnosis ignores people’s own explanations for their distress and encourages them to defer to an ‘expert’ for treatment. Having your reality redefined in terms of illness and biology is an incredibly powerful experience that can set the scene for a lifelong psychiatric career.
- Medication-focused: In diagnoses such as ‘schizophrenia’ treatment is primarily medication, which is becoming increasingly criticised for its harmful effects and lack of efficacy. Medication does nothing to address underlying difficulties.
- Human rights: People are expected to accept diagnoses for fear of being labelled as ‘lacking in insight’ and having treatment forced on them, violating their basic human rights. Others may, understandably, hide their voices or visions to escape forced treatment – blocking them from receiving help to cope with their experiences.
- Takes away hope: Diagnoses such as schizophrenia and personality disorder, seen as a life-long condition, can unnecessarily take away people’s hope for a meaningful recovery.
- Discrimination: People diagnosed with ‘severe and enduring mental illnesses’ are often subject to stigma, discrimination and exclusion. They may have trouble getting insurance, security clearance to travel overseas, and difficulty fostering or adopting children.
A Way Forward
Finding the best way to support those of us who are suffering and struggling to cope without relying on diagnoses and the existing system is a challenge. It can be hard to see what is possible when all we have known is what is available. Still, we want to engage people with lived experience of diagnosis and our allies, in a discussion to create a way forwards.
Our initial ideas include:
- Seeing mental distress as human and, ultimately, understandable: Rather than seeing voices, visions and extreme states as symptoms of an underlying illness, we believe it is helpful to view them as meaningful experiences – even if we don’t yet know what that meaning is. We believe it’s important to use human language when describing human experiences rather than medical terminology. Given the role of trauma and adversity, we need to start asking ‘what has happened to you?’ rather than ‘what is wrong with you?’
- Keeping the person in the driving seat: We want people to have the freedom to define their own experience. Support should be based on need, not diagnosis. Equally, people need to access a wide range of alternatives to understand and manage their experiences. Medication is just one way, amongst many, that people may choose. We need information about the pros/cons of each approach – true choice and collaboration, no coercion.
- Supportive communities: Mental distress is not just the domain of mental health services. Communities have an important role to play in supporting those who are struggling to cope. Community based options can run alongside, and as alternative to, psychiatry. Equally, these approaches must go hand in hand with greater awareness of the causal impact of social factors such as poverty, gender and racial inequalities, unemployment, deprivation and abuse, on mental distress