I presented this paper at a conference on 16-17 October in Brussels, organised by Jan Jařab, the Regional Representative of the UN High Commissioner of Human Rights.
I have been asked to try and bridge the gap between human rights, governments and service provider communities. Jan asked me to offer some critical reflections about – his words – the 'human rights tribe' – and what they (we) need to do to bring about the legal capacity revolution.
It’s six years since the Convention on the Rights of Persons with Disabilities (CRPD) entered into force. The Convention itself is a triumph of the human rights sector. Several courts – from the European Court of Human Rights down to first instance courts in several countries – have begun to pay attention to the rights of people with psychosocial disabilities. There’s been law reform on guardianship in Czech Republic, Hungary, Latvia and Croatia – all the result of fierce NGO advocacy. I’m proud that together with many civil society partners MDAC has played a role in framing guardianship as a rights concern, monitoring reality against international standards, litigating abuses, and advocating for reform.
My submission is that it’s now for the human rights community to get its – our – hands dirty in policy. This does not mean that we abandon principles or our approach in fearlessly holding governments to account. Instead, it means that we proactively seek out service providers – who to their detriment were completely absent in the negotiations to the CRPD – and in doing so refine our arguments and get more real change happening.
Points of agreement and disagreement
I don’t accept the proposition floated in this seminar that we all want the same goal. But if the goals which human rights activists are to be achieved, they should adjust what they’re doing because we’re not seeing the much-needed legal capacity [r]evolution.
There’s so much that everyone can agree on:
That said, there are items where there is much less agreement. One of these is mental health treatment in the absent of consent. For some in the international disability rights bubble, it’s incredible that people should think differently than they do. This is an important issue because it’s the source of so much harm and abuse, or the mechanism through which lives are saved, depending on your taste. You’ll likely agree with one of those statements and disagree with the other, but can’t both statements be true?
Let me tease out the heart of the issue around forced treatment by giving two simple examples.
Adam has a profound intellectual disability and does not use verbal communication. Gradually his behaviour changes, and his mother – his main carer – realises he has a toothache. She takes him to the dentist who manages to peek into his mouth to diagnose a cavity: Adam’s tooth needs to be filled. Adam hates being at the dentist, and cries and tries to push the dentist away.
Someone needs to decide what to do. Not filling Adam’s tooth will leave him in permanent pain, and cavities can get worse. There’s a serious argument that his right to health is denied if his tooth is not filled, but equally one could argue that if he doesn’t want his tooth filled, would giving him a filling amount to assault? If he is treated, he may need some sedation which isn’t great. Other nervous patients get sedation too: going to the dentist is unpleasant for everyone!
So, the question here is what is Adam’s ‘will and preference’ (as the CRPD says)? Do we count his contemporaneous preference to refuse treatment as decisive? What about his more long-term will to live without a toothache? How do we go about the apparent conflict between the two?
Brenda is a woman in her mid-40s who has had a diagnosis of schizophrenia for a long time. In a period of mental distress she is diagnosed with breast cancer. The medics say they need to operate. Brenda says no way: she is fine, she is a woman in her 20s and her breasts are fine. Her adult children say: 'Please operate. It’s not our mother talking, it’s her mental illness.'
Again someone needs to decide what to do - and in this situation, it is clear that procrastination or making no decision are, in fact, both decisions. Brenda says don’t treat, asking us to count her contemporaneous communication as decisive, and ignore everything else. Her family says treat her, because her mental distress is clouding her judgment. The CRPD tells us to respect Brenda’s will and preference, but what is that, and how do we know?
There are no easy answers for both Adam and Brenda, and I know that many would disagree with the proposition that both people’s contemporaneous utterances should be decisive.
A principled approach to practical dilemmas
Article 12 of the CRPD sets out in broad terms that everyone has the legal authority to author their own lives, and that if they need assistance to do so, countries should make such help available. We call this topic ‘legal capacity’. The CRPD Committee, a group of eighteen experts at the UN level, has for many years been talking about legal capacity as a very important right for States to implement. It held its first ‘day of general discussion’ on the topic in 2009. It dedicated its first general comment on the topic this year. The Committee is to be congratulated for these outputs.
In its session in October 2014 the Committee told the Danish government that it must ‘introduce into legislation supported decision-making which respects the person’s rights, will and preferences, in full conformity with article 12’ (see paragraph 33 of this document). It has instructed other countries to do the same.
The Committee’s general comment on article 12, published in April 2014, instructs States to ‘abolish’ substituted decision-making regimes which it defines as a situation in which:
The obvious question is what about cases, like Adam’s and Brenda’s, where the person’s ‘will and preference’ is contested? The Committee has not yet said anything concrete for States, despite some States quite reasonably requesting it to do so (see the smorgasbord of opinions which organisations and individuals sent to the Committee responding to its draft general comment).
Denmark sent in one of the most critical comments:
If substitute care and treatment decisions are not made for these individuals, they will run the risk of being exploited, neglected, or even left to die. To assume that no one would ever require someone else to make a decision on their behalf would against this background not only be flagrantly wrong but ultimately irresponsible.
In its written submission, the government of Germany made the point that general comments must not extend the scope of a treaty obligation. So why is it, Germany asked, that ‘the Committee itself concedes that its understanding of Article 12 diverges from the understanding common to the Contracting States, as evidenced by all the initial reports of State Parties so far’? Germany observed that the many reservations indicate countries’ ‘firm intent to retain the necessary options of substitute decision-making’.
Observing that ‘the Committee’s interpretation is not shared by the State Parties in general; not even by a substantial minority, Germany doubts that it is appropriate to call an understanding of Article 12 common to the States Parties a “misunderstanding”.’ The authors of the German submission outline how the German government is ‘convinced that there are situations in which persons with disabilities simply are not able to make decisions even with the best support available’ and that ‘the Convention could not and in Germany’s view does not rule out the possibility of substitute decision-making in some cases.’
Germany has a valid point. If all decisions made for others are called ‘support’, isn’t the human rights tribe playing the same game as governments – calling a 30-bed institution a ‘living centre’, a sheltered workshop ‘supported employment’, and dumping a kid in a school and calling it ‘inclusive education’?
Most people have an impulse to protect people, and this is perfectly legitimate and can be harnessed in a good way. States too have a duty to protect people against all sorts of harm. The CRPD Committee could helpfully detail in operational terms how it envisions Article 12 working in crunch situations like Adam’s and Brenda’s. I fear that the Committee’s principles-only approach may inadvertently make it less likely that States initiate reforms, because if the Committee doesn’t respond to their concerns they will lose trust in the Committee’s judgment.
UN mechanisms should be authoritative and garner buy-in from States. People with mental disabilities have been waiting for centuries for a legal capacity revolution and they need States to move from being unbelieving and intransigent to engaged and active. I think we’ll only see that happen when UN mechanisms listen to the concerns of policy-makers and offer feasible policy solutions or be open about the limits of knowledge and technology. States as well as humans sometimes need support in their decision-making and as much as civil society can help, States look to the UN for that authoritative guidance.