Chrysalis

I am just back from three days in Copenhagen, where I attended a recent Fundamental Rights Agency conference on the rights of people with disabilities and mental health problems. The conference is designed to help the EU formulate policy that will help member states fully adopt the UN Convention on the Rights of People with Disabilities (UNCRPD).
Attendance at the conference was made up of civil society groups, user movements and public servants from member states as well as European bodies including the Council of Europe, the European Commission and the UN High Commission on Human Rights.
Many topics were discussed but I was there with a particular interest in the discussions on ‘Involuntary treatment and incarceration’ and ‘Capacity Legislation’, this is because here in Ireland we have two very important pieces of legislation being discussed in the Oireachtas right now; the proposed Capacity Legislation and the review of the Mental Health Act 2001. Both these pieces of legislation have the potential to seriously impact on the lives of the mad community and so it is very important we make as positive influence on them as possible.
It was interesting to listen to contributions from people and groups in different jurisdictions and to hear how they have tackled similar problems as we have and to see some of the innovative approaches they have adopted. It was also interesting, and hugely frustrating, to hear the bureaucrats present talking about issues with the implementation of policy because of the current financial crisis. The representative from the UN High Commission pointed out that EU directives on ‘non-discrimination’ were currently being blocked at the European Council by a number of member states, Germany in particular who argue that these directives should be implemented at state not EU level. However, he pointed out that in reality they are more concerned with the restrictions these ‘non-discrimination’ directives would place on how they get to spend structural funds.
So essentially states want the ability to continue spending structural funds on institutional care and do not want to be forced into the paradigm shift toward community based care (even if this shift is being touted by them, including the Irish government, as their stated policy). Professor Gerard Quinn of NUIG has written a paper outlining how states are breaching the UNCRPD if they continue to fund and develop institutional based care systems. So as usual politics is letting us down, we are being told policy is shifting toward a progressive system of community care and away from regressive institutional care and the reality is states are taking EU structural funds and pumping them into the old and outdated methods. We need to be vigilant on this and not allow it where we find it happening.
The first working group I was involved in discussed involuntary treatment and incarceration. Now in Ireland it is possible to lose your liberty and bodily integrity on the opinion of your treating psychiatrist, if we are to fully adopt the UNCRPD this will have to end, and will only end if we radically reform, or in my opinion abolish mental health laws. Mental health laws, while they may have been intended to be an instrument for positive discrimination have in fact had a negative impact on the lives of the mad community and have allowed the state to breach their human rights.
I will take one point of discussion that I feel highlights the basic human problem we all have with dealing with this area of policy. A user from Norway presented her case to the group and discussed an idea being looked at to abolish mental health law, in particular the legislation that allows for involuntary treatment or incarceration based on the belief an individual poses a danger to himself or others. The idea was simple, introduce instead a Danger Law, this law would apply to all the community equally, so it that sense it is non discriminatory.
Our group began to discuss this idea with interesting results. One contributor said he would fear that a Danger Law could mean that if he had an altercation with a neighbour which led to a complaint he could be arrested under the terms of the law. Another lady highlighted the potential for abuse of such a law by both states, in the case of internment or incarceration of terror suspects without trial, and individuals who could use the law for personal revenge. The conversation continued in this vein until I pointed out to the group how funny it was that their concerns were raised so much when discussing a Danger Law because it suddenly had the potential to impact on their lives and not just the lives of the mad community. It gave pause for thought.
The group moved on to discuss the need to move away from institutional and toward community care in an effort to end forced incarceration and treatment. I raised my concerns that states, in particular here in Ireland were talking a lot about community care, multi-disciplinary teams and a sea change in policy but were retaining archaic mental health laws. A law expert from the UK pointed out that ‘Community Care Orders’ were being used in the UK to move the location of force from the institution to the user’s home and so in reality they retained force at the core of treatment and care while making it more cost effective, I found that a disturbing and distasteful development and one I will fight to ensure is not established here.
The next working group I was involved in dealt with ‘Capacity’. Now this is very important in the Irish context as we are currently discussing a Capacity Bill in the Oireachtas, we do not currently have a specific law in the area and will need to adopt one in order to fully comply with the UNCRPD. Discussions here in Ireland are centring around the need for a system of ‘Supported Decision Making’ and how best to structure it. My fear is that unless we at all times keep the individual at the core of all discussions on treatment and care, and unless we enshrine in legislation that the individual is at all times the final arbiter in any and all decisions and discussions we will not have ‘Supported’ but ‘Substitute Decision Making’ which will again not only breach human rights but will not comply with the UNCRPD.
So what is the roadblock to keeping the individual at the core of decision making in their own lives? It is simple, it is psychiatry. For a truly human rights based system of ‘Supported Decision Making’ to exist psychiatry will have to relinquish the control it now has over the lives of its patients, the control of their bodily integrity and freedom of movement. Society too needs to shift, we need to become comfortable with allowing people make decisions that in some cases may be harmful to them or contrary to what we feel is their ‘best interests’. Psychiatry, the government and civil society need to put in place the supports to facilitate people’s choices no matter what they may be.
Psychiatry too has more work to do, they need to give up their arrogant belief that they are the only authority in the area of emotional distress. If we are to have effective multi-disciplinary teams then all voices need equality and the leadership of the teams need to be opened to any of the constituent disciplines, while remembering individual at all times it at the core and has the final word. A system that is working in this way exists in Sweden were users have an individual Ombudsman who works directly with them to help them make and implement decisions, not matter what they are. This system too has flaws but its user centred approach is at least a step forward.
So what can I take from my trip? Firstly it’s obvious that psychiatry, and in particular its arrogant approach to control, is a global problem that needs to be immediately addressed. Mental Health Laws are contrary to the UNCRPD because they are by their nature discriminatory and contravene Articles 12-14&16 of the UNCRPD which deal with the treatment of users on an equal basis, liberty and security of the person and integrity of the person respectively. That any discussion on ‘Capacity Legislation’ and subsequent supports in decision making need to have enshrined in legislation that the individual at all times remains the final arbiter in their lives. My final thoughts are addressed to policy makers, instead of at all times trying to predict the consequences of decisions and legislating for them why not switch your focus and implement the changes and then react to the consequences as they arise, because we must remember that while we prevaricate people continue to suffer and die.