choice is extended to those with real illnesses whereas it is restricted
for those who have mental disabilities. Involvement and listening to the
service user voice can often be an exercise in tokenism. Too often the
mainstream doesn't have the capability to listen to the service user or
survivor voice.
There are some examples of good practice in involvement and service user
citizenship. For example Marion Janner's Star Wards project.
http://www.starwards.org.uk/
The UK mental health charities purport to be the user voice. Mind,
Rethink and NSUN are examples. Unfortuneatly they follow Anglophile
top-down organisational practices (which contrast to the French system).
There are some good practice examples however there are bad ones where
user voice is used to justify or confirm the top-down campaign
objectives rather than full inform them.
The voice of survivors is often the least listened too. Many like Bernie
Owen (Damaged Minds) or Mary Maddocks (Mind Freedom Ireland) are active
in their efforts. Some have success too, for example on the grapevine I
heard that ECT had been banned in one area in England (I think it was
Leicestershire). Many others don't and the evidence is the lack of
progress. The speed of change is so slow. Those that speak in agreement
with the mainstream are listened too and those who don't are often
sidelined.
Too often though health services and national mental health charities
don't know how to listen. The charities are often facing a battle
themselves. The ideas of the survivor movement are usually far in
advance of the mainstream and - rather ridiculously in my opinion -
considered too radical. This means the organisations which are meant to
be our voice often take a soft position. They're also influenced by the
work of peer organisations working on mental health policy but which
don't have a strong user focus.
I must admit my own failings in this area. A few years ago I made a
lengthy personal response to the UK New Horizons mental healthcare
strategy. I saw it as an important opportunity to influence national
mental healthcare and put in a sizeable amount of work to ensure that UK
mental healthcare was humane and ethical. It was a ten year strategy. I
am unaware if my efforts made any impact.
For the last two years I've been working on stuff related to our
national clinical guidance. I've spent hundreds of hours reading and
thinking about best practice recommendations for the treatment of
schizophrenia. During this time I have been excluded from receipt of
mental healthcare until my addictions were resolved. As I am finalising
my work into a coherent document I admit I am selling out on my beliefs.
I am attempting to steer away from radical or survivor-based ideologies
because I need to speak the language of the hegemony and get them to
agree. I am doing this through writing to my Minister of Parliament and
I doubt she is aware of the progressive theories. She may consider
mental illness a real illness. She will be worried about cost
effectiveness and I've had to cage some of my ideas in these terms. I've
had to bring psychiatric evidence to bear to further my point because I
hope my MP will once again forward my views to the National Clinical
Institute for Excellence, the Department of Health and the local hospitals.
This is the burden of activism. I am desperate for impact because I fear
many people are dying and being mistreated all in the name of
compassionate mental healthcare. The mainstream, in general, still
consider the paradigm of illness applied to behaviour and emotion to be
a real thing,. The mainstream don't understand Foucault's arguments nor
the sociological aspects of mental healthcare. It has been my burden to
leave these out of my current work in the hope that what I write has impact.
I've explained this little bit of my current life to help answer the
question of what is a survivor and what is a citizen, and can they be
exclusive. In a sense and in this example they can be. I can be a
survivor - someone who has suffered through ill treatment and become
burned into demanding progress beyond what the mainstream can understand
- or I can serve the goals of citizenship and activism but insodoing -
for the price of impact and effectiveness - I can not be true to being a
survivor, at least in this example of lobbying.
I suppose the exclusivity of pure surivor and effective activist may be
a facet of my fear of lack of impact. I see a somewhat black ad white
picture in this sense: the ineffective survivor/radical or the
(hopefully) effective sell out. My belief is citizenship is aligned with
servitude therefore I chose the latter over my own integrity as a survivor.
As Shakespeare said, "to be or not to be? That is the question."
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