The Disability Convention: clearing obstructions

Why does the human species need human rights? There’s a clue right at the beginning of the United Nations Universal Declaration of Human Rights 1948, in article 1: “All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.”

That word “should” identifies a tension between what as a species we may do, and what “reason and conscience” tell us we should do. We are a contradictory species, capable both of great compassion, and of great cruelty. While we are comfortably together here, extreme violations of human rights are happening somewhere in the world, right now.

A psychiatrist, recently returned from counselling victims of such atrocities, had terrible stories to tell. He was asked: “What sort of people can behave like that?” He told me: “The worst thing of all is that they are people just like you and me.”

What can trigger conduct opposite to how we “should” act towards each other? An answer comes next in the Universal Declaration, in article 2: “Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.”

That lists ways in which we may treat people as “other”, outside the scope of our compassion. Further potential units of division come in the next sentence: “Furthermore, no distinction shall be made on the basis of the political, jurisdictional or international status of the country or territory to which a person belongs, whether it be independent, trust, non-self-governing or under any other limitation of sovereignty.”

Attempts to handle our inherent contradictions lead to a further contradiction. The essence of human rights is universality: they apply to every human being on our planet by virtue of being a human being – qua birth, as Professor Degener put it just now. They have been created to counteract risks of denial of those rights to people categorised as “other”. But if we try to define particular categories, giving them enhanced protection, do we not strengthen that concept of otherness? By putting definitional boundaries around those categories, do we exclude some people who need those protections? Do we risk treating included people as units within a special category, rather than as individuals in all their variety, risking discrimination within anti-discrimination?

Who needs protection?

Protection of special categories is as old as the concept of human rights. In my own country – Scotland – this goes back more than 14 centuries, to 697AD when 50 kings acceded to Adamnan’s “law of the innocents”, “a perpetual law on behalf of clerics and women and children” protecting those categories in wartime, with specific penalties and enforcement mechanisms.

Many provisions of the Universal Declaration begin “Everyone”, or “No one”. Need we do more than emphasise that everyone means everyone, and no one means no one? Do we need a Disability Convention?

Now let’s go back to the sentence first quoted from article 2 of the Universal Declaration. Missing is explicit mention of disability, likewise covered only as “other status” in the European Convention on Human Rights, in article 14 (Prohibition of discrimination): “The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status.”

This omission hints at discrimination within anti-discrimination. People with disabilities were among the first to suffer in the events leading to promulgation of both Conventions. That is one of the first indicators of a slide towards totalitarianism. They have been, and are, victims of serious discrimination, and of abuse. Recently the Maltesers company published responses to an advertisement featuring a wheelchair user. They included these:

• “she’s so vile”
• “disgusting, freakish and awful”
• “normal humans walk on two legs”

(from The Times newspaper, 7 September 2018).

Sadly, we do need a Disability Convention. We have the Convention on the Rights of Persons with Disabilities, adopted by the United Nations General Assembly on 13 December 2006 (“the Convention”). How well, right now, are we collectively enabling the Convention to do the job that it needs to do?

I shall keep within my experience and engagement which, for many decades, has mainly been with people with that vast and varied range of disabilities characterised in the Convention as “mental and intellectual”. But here is another contradiction. One of the greatest strengths of the Convention is that it has generated huge collective energy in research, debate and communication, focusing worldwide attention and driving us forward as never before. However, that great strength has significant downsides. Right now is the time to recognise those downsides, and to deal with them, because they all can and will be remedied. What complaints do we keep hearing?

1. All this academic debate ignores and devalues how much was achieved before the Convention appeared.
2. The Convention and the debate create discrimination within non-discrimination.
3. There is confusing emphasis on language rather than on the realities behind the language.
4. The debates and controversy present a confusing picture, causing legislators, practitioners and others to step back, rather than pressing forward.
5. There is irreconcilable conflict among the principles in the Convention, only exacerbated by the debates.

Let’s take these one by one.

1. All this academic debate ignores and devalues how much was achieved before the Convention appeared

My answer is “True, but so what?” In 1984 Scotland, in the Mental Health (Scotland) Act, abolished the total, disqualifying guardianship that is so criticised. From 1986 onwards, we replaced it with measures explicitly predicated on needs for support (Morris, Petitioner). The Scottish Law Commission report of 1995 rejected a best interests test. In 2000 we adopted a methodology requiring a best interpretation of will and preferences, which at the time we called “constructing decisions” (see Ward, Adult Incapacity (2003), paras 15-9 and 15-10). That’s the theory. What matters is what happens in practice, which is still not good enough. Driven principally by the Convention, we are engaged in a major review of our law and practice.

2. The Convention and the debate create discrimination within non-discrimination

Universality is stressed in article 1, and by the frequent appearance of “on an equal basis with others”. Article 1 begins: “The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”

The key definition comes next: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

This strangely non-exclusive definition can have no function other than prioritising people who fit the description beginning with “include”, and thus marginalising those who do not. People with short-term mental and intellectual impairments may well need the protections of the Convention. Also marginalised are people whose cognitive impairments are disabling even when all barriers are removed. They are the very people who most need the protections of the Convention. They should be at the centre of its requirements, not marginalised. Any interpretation of the Convention that has to squeeze them in as “hard cases” is flawed and unacceptable, supporting “discrimination within anti-discrimination”.

3. There is confusing emphasis on language rather than on the realities behind the language

The English language version of the Convention fails to distinguish between “capacity” and “capability”. On a careful reading of article 12 of the Convention, there isn’t really a difficulty. It distinguishes “legal capacity” (article 12.2), “exercise of legal capacity” (article 12.3), and “measures that relate to the exercise of legal capacity” (article 12.4), all applicable in the context of variations in capabilities.

Many difficulties arise in language used about the Convention, not in it. Two years ago I queried “guardianship” in the title of these World Congresses, but I have failed to come up with a single word to describe “all measures that relate to the exercise of legal capacity”: though all of them are within our scope. “Guardianship” is a label that can mean everything from paternalistic regimes that contravene the Convention to supportive regimes that comply. What matters is that everyone with a relevant role (whether labelled “guardian”, “attorney”, “supporter” or otherwise) acts in accordance with the requirements of the Convention. Even a “supporter”, if acting in a paternalistic non-interpretative manner, contravenes the Convention: see the Essex Autonomy Project “Three Jurisdictions Report”.

“Substitute decision-making” and “supported decision-making” do not appear in the Convention. Many assertions about those terms do not reflect the recorded intentions of the Drafting Committee. Article 12 as we now have it was explicitly drafted so as neither to prohibit nor endorse so-called substitute decision-making. Again, what matters is not the label, but how it is done. Moreover, Article 12 applies to all aspects of the exercise of legal capacity, not narrowly limited to decision-making. Article 12.3 is frequently misrepresented as requiring support for decision-making. What it requires is support for persons with disabilities “in exercising their legal capacity”. As identified at p 13 of the Three Jurisdictions Report, the relevant question accordingly is: “What measures should be taken to support the exercise of legal capacity, both by supporting persons with disabilities to make decisions themselves wherever possible, and by supporting their ability to exercise their legal agency even in circumstances when they lack the ability to make the requisite decisions themselves?”

If there is one phrase where we need carefully to unpick the language of the Convention itself, it is the requirement for respect for rights, will and preferences in article 12.

Article 12.4 provides: “States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards… Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person… The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.”

Comments such as those of the UN Committee on the Rights of Persons with Disabilities come close to equating “rights, will and preferences” with will and preferences alone; to assuming that those elements are mutually consistent; and to treating expressions of “will and preferences” as decisive, rather than requiring “respect”. In article 12.4, “preferences” is in the plural: for anyone, a difficult decision may include balancing incompatible preferences. Many people with relevant disabilities may have difficulty, even considerable difficulty, in formulating a capable expression of will, but can do so if given sufficient time and support, and above all if actually listened to. Historically, and still too often, they are not enabled in these ways.

For people unable to formulate or communicate an expression of will, or their preferences, even with support, the UN Committee provides the concept of “best interpretation”, in its General Comment No 1 (2014) entitled “Article 12: Equal Recognition before the Law”, para 21: “Where, after significant efforts have been made, it is not practicable to determine the will and preferences of an individual, the ‘best interpretation of will and preferences’ must replace the ‘best interests’ determinations. This respects the rights, will and preferences of the individual, in accordance with article 12, paragraph 4. The ‘best interests’ principle is not a safeguard which complies with article 12 in relation to adults. The ‘will and preferences’ paradigm must replace the ‘best interests’ paradigm to ensure that persons with disabilities enjoy the right to legal capacity on an equal basis with others.”

That however leaves relevant questions unanswered.

At the last World Congress I introduced the true story of a man with severe learning disability and no verbal communication, who became extremely protective of his face. He had toothache. One interpretation was that his will and preferences were at odds with each other – resisting interference with his mouth but wishing the pain of toothache to end; and that his right was to receive the same treatment as anyone else.

A second approach was to suggest that the Convention requires that every effort should be made to persuade him to accept treatment, but if he persisted in his refusal he would just have to continue to suffer the toothache.

That story has developed since then. An experienced nurse pointed out that under the second option, he would claw at his face to try to get rid of the pain, potentially causing serious injury.

But what about the individual and collective voices of people closest to such situations? People First Scotland, a campaigning organisation of people with learning disabilities, debated the toothache story. They concluded that lawyers and academics are far too complicated. The man’s overriding will was that the pain should stop. They themselves would if necessary sedate him and take him to a dentist.

But in such circumstances, what is the status of “will”? Recent work (“Respecting ‘will’: Viscount Stair and online shopping” (Adrian D Ward and Dr Polona Curk, 2018 SLT (News) 123) suggests that, at any one time, any person can make only one expression of “will”, drawn from preferences and other factors. That will may change. People First Scotland agreed. One person wanted to move to different accommodation, until the point of committing to the move, when he decided to stay where he was. Another wanted to spend a lot of money buying something, until his support worker persuaded him that this was unwise. But what if they had a less able friend, not open to such reasoning and persuasion, who wanted to spend all his money now, leaving nothing for necessities next week? Their solution: his will was to spend all his money now, but if he had no food next week, his stronger will would be not to go hungry. That future, overriding, will should be respected. He should be prevented from spending all his money this week.

A best interpretation of future will may sometimes provide a Convention-compliant basis for overriding present expressions of will, where a best interests approach certainly would not. It would encompass the view, with which one roomful of former psychiatric patients unanimously agreed (though others, and probably some in this room, would not), that: “I am glad that when I was ill my right to life was considered more important than my right to autonomy.”

4. Do the debates and controversy create uncertainties which threaten to hinder implementation?

The simple answer is that out in the world among well-meaning and conscientious legislators, administrators, professionals and others, yes – one constantly hears that much of the debate and assertion is detached from reality; is unimplementable; would leave the most vulnerable and cognitively impaired people greatly at risk; is contradictory and confusing; and so forth. These views are widely held. They are inhibiting progress. I happen to disagree with them. But what is the solution? Let’s look again at the final criticism.

5. There is irreconcilable conflict among the principles in the Convention, only exacerbated by the debates

Yes, there are apparent conflicts, but are they irreconcilable? Take the definition of discrimination on the basis of disability in article 2 of the Convention: “any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation”.

To apply a “reasonable accommodation” to some people with some disabilities in some circumstances, albeit with the best of intentions, is discriminatory. More significantly, there is incompatibility among these requirements:

• Article 5: prohibits discrimination against persons with disabilities
• Article 12: requires recognition of legal capacity in all matters on an equal basis
• Article 16: requires protection against exploitation and abuse.

Meeting one of them may violate another. Protection against the vulnerabilities resulting from a disability requires discrimination, and may require some limitation upon legal capacity, and so forth.

I suggest that the problem here is that apparently conflicting principles and views are enthusiastically stated as absolutes. People with disabilities are not uniform units within a definition. They are people. Principles should be weighed against each other and against individual circumstances and realities. There are no absolutely right or absolutely wrong answers. The same answers do not apply uniformly to everyone in every possible situation. There is the best answer that can be arrived at for any one person, at a particular time, for a particular purpose, and in particular circumstances.

Human rights documents should strive to state universal principles. Laws should create inclusive frameworks, which optimise the ability of good practice to deliver best outcomes in individual circumstances. Many of us were working towards those objectives long before the Disability Convention appeared, but vastly more needs to be done. Well-meaning theory needs to be translated into practical results for all people with disabilities, everywhere. We need to have these debates; we need to move as far as possible towards fully inclusive laws that replace reasonable accommodations, which always contain elements of discrimination, with the concept – in laws and practice – of universal design.

These things must happen. To achieve them, we must be rather less strident with some of our assertions, to avoid the inhibitory effects that I have described. But in an inclusive and balanced way, we must continue to debate them, and to assert them.