Say NO to Testing on Humans!

I was at a conference this week. I sat and listened to tests that had been undertaken on “schizophrenics”- the good news is it is now in hyphens. Heard about “token experiments” when people were given tokens for behaving nicely. Heard about people being given watches that bleeped at certain intervals. Saw symptoms divided up, put into percentages, and ,made into charts. I didnt see any faces there. I became increasingly more upset as it went on. Until towards the end I went outside and wept.

I wept and wept around the corner alone. No matter what I did, I could not seem to stop. I finally after 30 mins pulled myself together and returned. Only to see more analysis and statistics of studies. I left. When my cousin collected me in her car, she spoke to me of how she had been training her dog, to behave. She spoke to me of testing on animals. How she had seen videos on the internet of dogs that were put in cages and drugged so much they couldnt move, then tests were carried out on them. As a result she was no longer going to buy the dog foods that carried these tests out.

I wondered why is it still okay to carry out tests on humans?
In the plane on the way home, I realised that I wept because my heart is still open. I do not see figures and symptons, I see people that are experiencing suffering. That are are showing their raw emotions. Not symptoms, figures and data.
I was reminded of testing that used to be done on native people, thesis written on why black and Polynesian people were not the same as others. Pictures of their skulls were paraded about, to prove these theories. Which really just amounted to good reasons to treat them badly. I understood then, what my Maori ancestors suffered. In a more profound way than words could ever have portrayed.

Earlier I had spoken to a woman, who said how Maori land had been confiscated to build a Mental health institute- Tokonui. The irony was that the majority of its inhabitants were Maori people. Still suffering the same treatment, but under a different category.

I wrote this as a way to try and show how I was feeling.

SAY NO TO HUMAN TESTING
I am not a frog on a slab in a biology class, awaiting dissection to see how I work.
I am a woman.
I am not a statistic- here to be added up, deleted, manipulated and categorised,
I am a living breathing being.
You wonder why those that hear voices feel they are always being watched and monitored by their governments?
It is because most of them are, in their hospital wards.
And the rest of us? We can feel their pain.
I am not someone to be looked at from a distance,
Come beside me and hold my hand.
I do not behave the way you would like.
Should I apologise that my suffering has manifested in a way that you can clearly see
Without me speaking the words to explain it.
Please do not try to explain my pain and suffering.
JUST CARE.
Please do not drug me, restrain me, and test me like a lab animal.
I know that because people care many companies have stopped animal testing.
So why haven’t you stopped testing on me?
I am not an animal,
I am you dressed in another body, clothed in the events of my life,
My Clothes are not as clean and as tidy as yours.
I cannot see my story in your charts.
6 week tests are the proof that the drugs work.
Their promotional videos say so.
So why is it 20 years later when people are still unwell,
It is they who are made to feel a failure not the drugs?
Say no to human testing, and become a human.
I am not Mad,
I am angry.
Angry that you have forgotten who I am.
I am you.
When will you start treating me like you?

 

I did  enjoy listening to the presentation by Wiremu Nia Nia and Egan. They told stories of Maori people who were treated as insane,  whose experiences when put into a cultural context were understood, explained and healed. In New Zealand I am pleased to say that there is a greater understanding of the cultural diversity that is present. Health Boards, are at last acknowledging Maori concepts and understandings.

 I am hopeful that a new path is being laid for those that hear voices to walk. The Hearing Voices Network in Aotearoa NZ, and other countries around the world are making people aware  of how changes need to be made. How we are all the same in a different way.

STIGMA, how it hinders recovery.

The Stigma around hearing voices, in particular Schizophrenia is severe. the SANE guide to stigma states

“Stigma causes harm in lots of ways… It blights the life of people with mental illness, cause stress and unhappiness in the lives of their friends and families too, and damages society as a whole.”

It discourages help seeking, makes recovery harder, and promotes discrimination.

A New Zealand in depth report called “FIGHTING SHADOWS” on the excellent Like Minds Like US site, outlines these effects in detail. Not only does the stigma manifest in the way others treat those diagnosed with an illness, but can have a devastating effect on the people who “accept the stigma”. That is Selfstigmatise. Beleive the stigma, and thus lose all hope. The research says this

Self-stigma is an issue that most people with experience of mental illness would recognise, seeing it either in themselves or in other people. It is generally believed that self-stigma arises from internalising the negative messages and behaviour that people with experience of mental illness receive from others. In other words, the concept of selfstigma seems fundamentally and inextricably linked to the concept of discrimination”

An example of the effect of self stigma are found further on.”

One writer, on being diagnosed with schizophrenia, immediately began thinking he would never again hold a job and started considering suicide (Mind 2002)…

Research has repeatedly found that people with experience of mental illness who self-stigmatise are more isolated, alienated, and socially withdrawn than are people with experience of mental illness who are not self-stigmatising (Caltraux 2003;Ritsher and Phelan 2004; Bromley and Cunningham 2004; Stuart 2005). This social isolation usually involves withdrawal from, and problems with, friendships and family relationships, and includes avoiding employment (Caltraux 2003). Because selfstigmatising people with experience of mental illness may have relatively limited social networks, they are less likely than the general public to receive support when they need it (Bromley and Cunningham 2004).”

An interesting paragraph. It would ask the question then, are many of the symptoms of mental illness, actual symptoms, or reactions to the current public perception and stigma around the illnesses. This is even more reason why we should support the removal of the label Schizophrenia as it seems to have no positive connotations for an individual, when the crippling stigma is taken into account. The importance of positive reporting of hearing voices gains more relevance. To have better information available on the hearing of voices accessible for the public.

The research paper also mentions “circuit breakers” to counter stigma. These include better education on the nature of their condition, peer support groups, role models, and empowerment.

“Enhancing empowerment is mentioned in the literature as a means of combatting self-stigma(Watson and Corrigan 2001; Health and Development Networks 2004; Shih 2004; Bagley and King 2005).Following a review of the literature, Bagley and King(2005) conclude that many people with experience of mental illness might cope best with active problem solving, which involves people having control over their lives. The Stigma-AIDS eForum states that one of the best means of combatting self-stigma is by facilitating empowerment, especially at the point of diagnosis (Health and Development Networks 2004). Shih (2004) argues that empowerment helps people with experience of mental illness to develop feelings of mastery and self-efficacy, and thereby helps them to combat discrimination and avoid internalising stigma.”

This is just a small snippet of the lengthy and interesting research paper. I have placed it also in the links section for future access, or click on the “fighting Shadows “link above.