Study on Inequality in Life and Death: The Duty to Investigate and Remedy the Systemic Causes of the Deaths of Persons with Disabilities under International Law

Study on Inequality in Life and Death: The Duty to Investigate and Remedy the Systemic Causes of the Deaths of Persons with Disabilities under International Law

(International Disability Alliance, Geneva, 2025)

Gerard Quinn*

“The only thing that makes sense of the loss of your loved one is that maybe lessons will be learned and the same thing will not happen to someone else…”

Testimony of a parent, Andre McCulloch, to the Justice Committee of the UK Parliament hearing on the Coroners Service (2021).^[1]

Introduction

Death is an interesting lens on life.  When and how one dies often reflects the balance of advantages and disadvantages experienced throughout life.  Inequality is too often ignored in life, but is vivid and cannot be ignored in death.  Through it we can shine a mirror on the lifelong effects of accumulated disadvantages and structural inequalities.  We may – or may not – learn from this.  And the learning derived can be used to build a better world for the living.

International and regional law is now awash with norms governing how investigations into ‘suspicious deaths’ are to be conducted.^[2]  A ‘suspicious death’ is one for which there is no readily available explanation.  International norms have evolved far beyond their origin in the late 1980s.  At the time, they had to do with the adequacy of investigations into deaths arising from political violence, especially in countries transitioning from authoritarian regimes to democratic forms of government.^[3]  They now extend to ‘ordinary’ deaths, particularly of marginalised groups unconnected with political violence or systems in transition.  And they now require not just an accurate finding on the narrow or proximate medical cause of death but also a probing of underlying systemic factors that may have been at play – the slow but inexorable effects of inequality over a lifetime. These international standards have tremendous potential when it comes to the investigation of the deaths of persons in marginalized communities such as persons with disabilities and older persons.

The purpose of this Note is to highlight the salient features and recommendations of the above Study on Inequality in Life and Death which was commissioned by the International Disability Alliance (IDA).^[4]  IDA is a global network of disability NGOs and DPOs (Disabled Peoples Organisations) run by disabled people.  IDA exists to help its members get the most out of the UN convention on the rights of persons with disabilities (UN CRPD).  This convention – the first of the 21st century – is designed to achieve equality for all persons with disabilities and to reverse decades, if not centuries, of discrimination.  Targeting and reversing structural inequalities is key to the achievement of the aims of the UN CRPD.

Following closely the content of the IDA Study, this Note has five parts.  First, this Note will reflect on the legal significance of death.  Death ends our legal personhood, which is why a myriad of formalities exist to certify death.  This is mostly straightforward when ‘natural causes’ are involved.  But when complications arise there is nearly always the need for an extra investigative layer.

Second, this Note will reflect on the potential systemic causes of the deaths of persons with disabilities (going beyond ‘natural causes’).  They are many and varied and affect different cohorts of persons with disabilities differently.  One of the most affected groups are persons with intellectual or psychosocial disabilities.  For example, it is estimated that persons with intellectual disabilities die 20 years younger than their counterparts in the UK.  The purpose of this section is to show that the common assumption that most deaths of persons with disabilities are due to ‘natural causes’ needs to be viewed with caution.  The death may instead be a predictable outcome of a lifetime of accumulated inequality.

Third, this Note will survey the available international and regional standards on the proper investigation of such deaths.  These standards pre-date the UN CRPD and were not originally designed to cover marginalised groups.  However, they have tremendous potential in helping  to identity the systemic causes of their deaths and in reversing the underlying inequalities that lead to them. These standards are aptly crystallised in the so-called Minnesota Protocol, a UN policy document directed at States that draws together all salient features of international and regional standards on the investigation of ‘suspicious deaths.’ Regional caselaw in Europe, Africa, and the Americas has usefully focused on the adequacy of investigations into the deaths of persons with disabilities and will be mentioned.

Fourth, this Note will recount some investigative innovation around the world.  Public inquiries in many countries have long demonstrated that systemic causes are often the root cause of the deaths of persons with disabilities.  But these inquiries are the exception.  What is crucially important is that investigations into individual deaths can go beyond purely personal factors to examine underlying systemic causes.  An outstanding example is the long-standing practice of coroners in the UK of producing ‘prevention of future death’ reports in cases where underlying systemic causes have been identified and need to be rectified.  This information can be used to drive and accelerate change for the living.  A key point in the IDA Study is that this learning can only happen once the investigation is properly configured to probe the underlying or systemic causes of such deaths where they exist.  While most investigations look at individual deaths, they can and do focus on underlying and widely shared systemic causes.

Finally, this Note will recount some of the key conclusions of the IDA Study as well as its practical recommendations.

With respect to the scope of the IDA Study it must be emphasised that the duty to investigate ‘suspicious deaths’ applies equally in peacetime and in war.  This is important since many studies have shown the disproportionate impact of armed conflicts on persons with disabilities.^[5]  While the practical challenges on the ground may make this duty hard to implement during or in the immediate aftermath of conflict, the duty itself never disappears.^[6]   However, implementing the duty during conflicts was not the main object of the IDA Study and deserves separate treatment.  The main objective was to understand the impact of inequality throughout life on the mortality of persons with disabilities.

1. The Legal Significance of Death – a Bookend to Personhood.

Human rights assumes the existence of a person – a jural entity with moral agency acknowledged as such by others and by the State.

Life – and the moral agency of the individual – begins at birth and ends in death.  Interestingly, many persons with disabilities did not have their birth registered in the past.^[7] This no doubt reflected the prevalent view that children born with disabilities were somehow lesser persons.  Indeed, the UN convention on the rights of persons with disabilities now corrects for this with an important provision guaranteeing the right of children with disabilities to the registration of their birth.^[8]

As the IDA Study emphasises, death is a key marker for legal personhood.  In between birth and death we can share our personhood through marriage or its civil equivalent.  Life – and our associated acknowledgement as a person – is key to human agency and our legal capacity to interact freely with others.  That is why many legal formalities attach to all stages on the continuum and explains why some entity (usually a State agency) is tasked to officially certify them.

Death ends our legal personhood.  Our capacity to enter relationships (whether commercial or intimate) ends.  Our civil and political rights end.  All economic and social entitlements end.  It is therefore especially important to accurately certify the death of an individual.  The one possible exception whereby personhood extends beyond death has to do with the right to property and its disposal after our death.  This is done by making a valid will.  However, strictly speaking, this is not really the exercise of human agency after death but instead involves respecting human agency in life concerning matters that happen after death.

While the legally dead do not enjoy the same continuum of human rights that they once had in life, they are not entirely rights-less. The UN Special Rapporteur on extra-judicial, summary, or arbitrary executions issued a highly influential report in 2024 on the rights of the dead – or, more accurately, their right to protection.^[9]  Strictly speaking, human rights cannot be exercised by the dead since their moral agency has expired.  However, a bedrock of rights continues to protect the dignity of the deceased and can be exercised by close relatives.  Given the disrespect shown them over many years – e.g., in the abuse of corpses for medical research without any direct consent much less the consent of the affected families – this is a natural concern and may well afflict the bodies of persons with disabilities more than others.^[10]

The certification of death marks the official ending of personhood.  It is normally assisted by an attending physician who can attest to the true cause of death.  But what if there is no attending physician?  What if the attending physician is unsure of the true cause of death?  What if the attending physical did not examine the patient for months and cannot attest to his/her true and contemporaneous state of health and cause of death?  And what if there is reason to believe the true cause of death has nothing to do with ‘natural causes’ but with unnatural causes such as violence or illegality which require further exploration?

Typically and in most countries, if there is any reason to believe there has been a ‘suspicious death’ then an extra investigation is required.  This can be done by a coroner or by a medical-legal examiner depending on the legal system.  Traditionally, the role of such an investigative body was quite narrow and technical – to identify the deceased, determine the time and location of death, and determine the proximate or medical cause of death.^[11]  More often than not, the coroners or medical-examiners who conducted the investigations were either medically or legally qualified.  Once their job was done the official certification of death could then proceed – thus ending legal personhood.

International human rights law does not directly mention the work of these investigative bodies.  Progressively, however, their operations (and the adequacy of their performance) has steadily become an important subject under international human rights law.  This has evolved as an aspect of the right to life.  To be clear, it is not so much the substance of the right to life that is implicated – it is more the so-called ‘procedural dimension‘ to the right to life.^[12]  This refers to the kind, degree, and depth of investigations that must be carried out whenever the cause of death is unclear and whenever a referral has been made to an investigative body like a coroner or a medical-legal investigator.

If the investigation is configured too narrowly it will miss any underlying systemic causes. But what are the potential systemic causes of the deaths of persons with disabilities and how do they manifest over a lifetime?

2. The Death of Persons with Disabilities is Often Attributed to ‘Natural Causes’ When the True Causes are Anything but ‘Natural.’

Most of the time the cause of death of persons with disabilities – indeed that of many marginalized groups – is simply assumed to be ‘natural.’  In a way, it is often assumed that their condition or status as a person with a disability caused or led to their death.  In a perverse way the person is held responsible for their own death.  In a way, the person (due to his or her condition) is problematized.

Now, it may well be the case that the true cause of death is ‘natural.’  But the mere assumption that it is has likely masked deeper and more systemic causes.  This embedded cultural assumption screened from the full view of investigators the possible true cause of death.

What kinds of systemic causes could potentially be at play?  Mortality research from around the world suggests that certain categories of persons with disabilities are at a higher risk of early death compared to their peers.  Foremost among them are persons with intellectual disabilities.^[13]  One fascinating area of research in the field of social epidemiology (the study of the effects of advantages and disadvantages in life on morbidity and mortality) concerns the impact of social isolation and loneliness on all persons, but particularly on persons with intellectual disabilities.  It appears that having a friend in life is the best form of protection.

Institutionalization – still prevalent around the world despite its violation of a number of key international norms – poses its own set of risks and magnifies others.  The sheer isolation from the community inherent in institutionalization poses risks.  The conditions and level of treatment within institutions also generates real risks to mortality.  Deprivation commonly afflicts life in institutions.  Indeed, even when the right to live in the community is recognized, there can be problems with services and supports that create dangerous gaps in coverage leading or contributing to early mortality.

All of these ‘risks’ are liable to be missed if the investigator simply assumes that ‘natural causes’ automatically attend the deaths of persons with disabilities and therefore fails to probe any underlying systemic factors that may be at play.  If systemic factors are ignored then the cycles of deprivation that lead to death will not be broken – a disservice to the living as well as the dead.

3. International and Regional Standards on the Investigation of ‘Suspicious Deaths’ Support the Probing of ‘Systemic Causes.’

As previously mentioned, the early international standards on the investigation of ‘suspicious deaths’ came about as a result of political violence and the exigencies of transition from authoritarian regimes to the rule of law in the late 1980s and early 1990s.  Hence the emphasis in the early standards on investigations supporting, or leading to, accountability especially through the criminal law.

Often, in the context of political violence, relevant deaths could be hidden from full view and deniability could easily be invoked by the State and agents of the State.  However, this self-serving narrative could be flipped if a duty to investigate the facts surrounding a violent or suspicious death (or disappearance) was made incumbent on the State.  Such a ‘procedural duty’ was fashioned by various human rights treaty bodies – global and regional – from the deep logic of the right to life.  It is explained partly by the transcendent nature of the right to life.  It is a duty owed not just to the deceased (whose right to life is admittedly academic after their demise) but also to their grieving families.  Truth-telling is also considered critical to the rule of law since no accountability is possible without recourse to the basic facts. And truth-telling is critically important to avoid deaths and tweak public policy and law based on lessons learned.  This preventive rationale is the core focus of the IDA Study.

The duty to investigate ‘suspicious’ or ‘potentially unlawful’ deaths is well dealt with in the jurisprudence on the right to life under the International Covenant on Civil and Political Rights (ICCPR) and is extensively canvassed in the IDA Study.^[14]  Generally speaking, the main requirements of a truth-telling institution and the law that grounds and regulates the same are (1) independence, (2) efficacy, (3) promptness, and (4) inclusiveness, especially toward grieving families and the public at large.

The requirement for independence is obvious – the integrity of a truth-telling process should be insulated from entities or agents who may have a disincentive to tell the truth.  In a disability context this may arise where agents of the State may want to conceal deep-seated failings in services and supports toward persons with disabilities as well as violence within institutions.  Even where the truth-telling institutions are assured sufficient insulation from external pressures they may not exhibit sufficient independence of mind to operate effectively.  In other words, their level of awareness of the lives lived by persons with disabilities (or other marginalized groups) may be insufficient.  This can lead to an erroneous assumption that ‘natural causes’ are always to blame that needs to be corrected.

Efficacy refers to the ability of the truth-telling institution to actually get at the truth.  The many factors determining their ability to get at the truth may have to do with training, resources, the power to legally compel witnesses, and the availability of evidence.  Often this capacity will be helped by a properly conducted forensic examination of the scene as well as by a professional autopsy.

The need for promptness is self-evident when one considers the natural decay of key evidence, especially when forensic and toxicology tests are needed.  And the need for inclusiveness has particular resonance for families who might be kept in the dark for years.  Since most families will not necessarily have the skills to interact effectively with investigations they are often (but not always) given supports to do so.  Furthermore, the importance of the issues at stake gives rise to a broader right on the part of the public to be involved and informed.  Such public engagement is an added insurance against hiding the truth.

Many of these requirements are set out in the 2019 General Comment No. 36 of the Human Rights Committee on the right to life.^[15]

The UN system has drawn all the various requirements together to assist States in their law reform efforts on death investigations in the form of the Minnesota Protocol (2016): Manual on the Effective Prevention and Investigation of Extra-Legal, Arbitrary and Summary Executions.^[16]  Despite its somewhat misleading title, this instrument is in essence a policy document to guide law reform and not an amending protocol to a treaty.  The 2016 version is but the latest iteration of the manual which was first issued in 1991.  One of the more interesting things about its current iteration is that it was drafted by both international lawyers and forensic experts.  It is therefore complemented by detailed and exceptionally useful guidelines on the proper conduct of forensic examinations.^[17] In short, the Minnesota Protocol is an indispensable reference document for Governments intent on ensuring the fitness of their investigative institutions.

The 2016 Minnesota Protocol is now complemented by the 2022 Istanbul Protocol on the Effective Investigation and Documentation of Torture and other Cruel, Inhuman and Degrading Treatment or Punishment.^[18]  This is highly relevant to the investigation of the conditions experienced by persons with disabilities in institutions and even in some community settings.  However, these conditions have to reach the threshold of torture, etc, before the Istanbul Protocol applies.  Many slow-burning systemic issues (e.g., poor services) may not reach this threshold but can be just as devastating.  It is these deeper systemic issues that primarily concern the IDA Study.

The relevant ICCPR jurisprudence and the Minnesota Protocol on the duty to investigate in the context of suspicious deaths assumed a paradigm case – namely death as a result of political violence.  This fit the early 1990s when transition from authoritarian regimes was the main focus.  The text of the Protocol was not nuanced to reach the deaths of marginalized groups in society such as persons with disabilities (much less older persons).  However, the relevant standards can be stretched to cover their situations.

Of course, the real added value of the standards in a disability context is requiring the investigator to set aside easy assumptions about the ‘natural causes’ of death in order to probe the possible underlying or systemic causes of death.  Arguably they can do this.  Much of the focus of the standards is on the protections of life and the prevention of future or avoidable deaths, but it is hard to imagine an investigative body performing this protective and preventive function without probing the underlying systemic causes (if any).

Regional human rights standards in the Organisation of American States, the Council of Europe and the African Union have basically followed the ICCPR and the Minnesota Protocol.  That is to say, investigations are required whenever there is a ‘suspicious death’ and they must meet the common core criteria of independence, effectiveness, promptness, and inclusion.^[19]

Some recent cases in the regional systems on investigations in regional human rights courts have reached the specific issue of the deaths of persons with disabilities.  They all, in their own way, require investigators to go beyond narrow medical explanations to probe the underlying systemic factors that may possibly be at play.

For example, the recent 2024 judgment of the European Court of Human Rights in Validity on behalf of T.J. v Hungary is highly instructive.^[20]  This case focused on the death of a person with an intellectual disability in an institution (Topaz social care home).  The relevant institution had been visited by many reputable organs of the State in the recent past who all found deplorable and life-threatening conditions.  There had been a pattern of several deaths at the institution which should have raised alarms.  This case focused on one specific death in the institution – the death of Ms T.J.  One issue in this case was the adequacy of relevant investigations into her death.  This narrowed down to the question of how wide or narrow the scope of such investigations should be.  The relevant investigations paid little or no heed to the manifold warnings about threats to life within the institution given by the many State agencies and others that had visited it.  In an important passage the European Court of Human Rights held:

1. 102. [T]he police investigation was focused essentially on establishing the direct cause of Ms T.J.’s death and whether the restraint measures used on her had contributed causally to her death. The domestic authorities did not establish the facts concerning the level and quality of care in Topház, and did not examine the adequacy of Ms T.J.’s living conditions or whether there were shortcomings in her medical and therapeutic care.

   103. Consequently, they did not carry out any assessment of whether those alleged shortcomings had a bearing on Ms T.J.’s death and whether any crime had been committed in that regard.

As a result, Hungary was found in violation of the ‘procedural dimension’ to the right to life under the European Convention.  As the IDA Study states:

This is indeed a remarkable decision.  It indicates that the European Court is inclined to the view that when persons in especially vulnerable situations die in suspicious circumstances that the relevant investigation ought to take full account of the systemic factors that led to the death.^[21]

Similarly, the Inter-American Court of Human Rights ruled in the 2016 case of Chincilla Sandoval v Guatamala that investigations have to have a broader remit than simply exploring the narrow medical ground of death.^[22]  The case involved a female prisoner with an underlying condition and disability (diabetes) that, if left untreated, led to many life-threatening complications.  In the instant case the female prisoner died as result of complications arising from untreated diabetes.  In its ruling the Inter-American Court built on the idea that the right to life was underpinned by an obligation to tend to the ‘conditions for life‘ which, in her case, meant providing adequate medication and treatment.  As to the adequacy of the relevant investigation the Inter-American Court ruled (approving a prior ruling by the Inter-American Commission):

[W]ith regard to the investigation conducted after Mrs. Chincilla’s death, the Commission noted that there was no inquiry into the possible responsibility of State officials, including prison staff, doctors or the courts, for their alleged failure to fulfil the duty to guarantee Mrs. Chincilla’s right to life…for the omissions related to her prison conditions, the lack of adequate medical treatment and the factors that could have contributed to her death.

[para 228].

In effect, the Inter-American Commission and Court ruled that the scope of the investigation had been cast too narrowly.  Where there was a want for the basic ‘conditions for life‘ (medications in this instance) and where there was a discrete minority at issue (prisoners with disabilities) a heightened degree of scrutiny of the cause of death was needed.  This chimes well with the above ruling by the European Court of Human Rights in Validity.

The African Commission on Human and People’s Rights adopted a remarkable General Comment on the right to life in 2015.^[23]  It stressed the interdependency of civil and political rights (in this case to the right to life) with economic, social, and cultural rights.  It also stressed the importance of the ‘conditions for life‘ which include respect for economic, social, and cultural rights.  In this regard, the Commission underscored the importance of preventive measures to avoid needless deaths.

There have been many cases on the duty to investigate before both the African Commission and the African Court on Human and People’s Rights which are well canvassed in the IDA Study.  The main case dealing with disability that came before the African Commission bodes well for the future of African jurisprudence: Purohit & Moore v the Gambia (2003).^[24]  This case involved a direct challenge to civil commitment laws which made possible the compulsory detention and treatment of persons with mental illness in the Gambia.  In its ruling on the merits, the Commission stated:

The African Commission maintains that mentally disabled persons would like to share the same hopes, dreams and goals and have the same rights to pursue those hopes, dreams and goals just like any other human being 10. Like any other human being, mentally disabled persons or persons suffering from mental illnesses have a right to enjoy a decent life, as normal and full as possible, a right which lies at the heart of the right to human dignity. This right should be zealously guarded and forcefully protected by all States party to the African Charter in accordance with the well established principle that all human beings are born free and equal in dignity and rights.^[25]

This is remarkable language as it was adopted three years before the conclusion of the negotiations for the UN CRPD.

So far, neither the African Commission nor the African Court have had to deal extensively with the adequacy of investigations into the suspicious deaths of persons with disabilities.  But it is reasonable to assume that it will follow the lead of the Inter-American Court and the European Court given its solicitude toward the ‘conditions for life‘ and its recognition of the importance of the rights of persons with disabilities.

In short, even though the relevant international and regional standards on death investigations were not adopted with marginalized groups like the disabled in mind, they have tremendous potential to contribute to change.  Their focus on the ‘conditions for life’ can lay bare structural inequalities that cause premature death.

4. Public Inquiries Around the World Reveal the Systemic Cause of the Deaths of Persons with Disabilities.

No matter how good, international standards are suggestive. What matters is how domestic legal regimes give effect to them.  A number of innovations around the world have occurred.

A distinction needs to be made between public inquiries and individual death investigations.  Public inquiries are different from the ‘normal’ death investigation.  Such normal death investigations (usually led by a lawyer or doctor) usually focus on one case even though they may incidentally highlight broader systemic issues.  Public inquiries (often led by a senior judge) usually come about as a result of a tragedy affecting many people that arises suspicion regarding underlying systemic factors and calls for heightened scrutiny leading to possible reform.

A quick survey in the IDA Study of some of the more prominent of these public inquires around the world that focused on the deaths of persons with disabilities reveals one stark fact – that the true cause of death was anything but ‘natural causes.’  For example, the Dotan Commission of Inquiry was established in Israel in 2023 to investigate, inter alia, a series of deaths in institutions for persons with disabilities.^[26]  Many deplorable conditions were found to exist in the institutions and deaths were attributed to these underlying conditions.

Conversely, a botched deinstitutionalization program in South Africa led to the deaths of 144 residents with psychosocial disabilities (Marathon Project – Life Esidemini tragedy).^[27] The parents and families had unsuccessfully pleaded with local governments not to proceed with the planned closure without having the necessary community supports in place.  Three sets of public inquiries were instituted – a review by the Federal Health Ombudsman,^[28] arbitration hearings led by the former Chief Justice of South Africa,^[29] and a public inquest conducted by the High Court of South Africa.^[30]  They found that many of the relevant deaths were erroneously attributed to ‘natural causes.’  This was either a lie or a wanton disregard for the truth.

Living in the community can also pose its own risks unless the additional safety and other needs of residents with disabilities are taken care of.  An interesting case in point is the Grenfell fire tragedy in the UK.^[31]  Much of the public housing stock in the UK (and indeed many countries) pre-date modern policies on proper insulation and fire safety.  Much of the UK housing stock was retrofitted in the last decade or so to add insulation to the external walls of high-rise apartment blocks. And much of this external cladding was combustible.  Indeed, if a fire started on the first floor it could quickly climb up the building, crack windows with the heat, and set fire to internal curtains and fittings.  An entire tower block could be engulfed in minutes.  Coroners in England had warned about this from a previous fire.^[32]  For years, advocacy groups for persons with disabilities in social housing in the UK had advocated for ‘personal emergency evacuation plans’ (PEEPs) but no such plans were put in place.^[33]  Unfortunately at least 74 people died in the Grenfell fire – many of whom had one form of a disability or other.    According to the official inquiry, these were not ‘natural deaths’ due to fire but deaths due to longstanding neglect and all avoidable.^[34]

Of course, one might say that the findings of such inquiries are the result of one-off events and one shouldn’t generalize from them.  However, it does seem fair to infer from these and similar inquiries that the easy assumption that most deaths of persons with disabilities are due to ‘natural causes’ should be put to one side in favor of a more probing demeanor on the part of investigators.

However, public inquiries are the exception – not the norm.  Most investigations of ‘suspicious deaths’ are still done by coroners or medical-legal investigators acting in individual cases.  There are some examples of innovation around the world whereby these individual investigators probe the underlying systemic causes and report accordingly.

For example, rules introduced in England & Wales as early as the 1980s required coroners to issue ‘Prevention of Future Death‘ reports (PFDs) addressed to Government, agents of Government, and private parties.^[35]  Essentially, these PFDs set out a core concern (which may have to do with services) and by law, the addressee is obliged to respond.  All of these PFDs are highlighted (and searchable) in a website developed by the British judiciary.^[36]  There are many reform proposals at the moment to further develop this system.  In particular, INQUEST (a leading UK NGO that focuses on the adequacy of death investigations) has put forward a proposal to create a national oversight body to collate such PFDs, to follow through on issues highlighted in PFDs, and to inform Parliament as to the reforms needed.^[37]  The operation of the PFD system is now governed by the Coroners & Justice Act of 2009  and by detailed Guidelines from the Chief Coroner of England & Wales.^[38]

Complementing the PFD system is the near-automatic thematic and in-depth review of all deaths of persons with intellectual disabilities and autism in the UK (National Health Service – LeDer programme).^[39]  This was intentionally designed as a ‘systems improvement’ tool aimed at highlighting (and reforming) systemic issues in the national health service affecting persons with intellectual disabilities.  Given the findings of medical researchers on the high mortality rate of persons with intellectual disabilities throughout the world this is an important development.

Interestingly, coronial data (i.e., the results of coroners’ inquiries) is combined in Australia and New Zealand into one large database.  That data is mined thematically by public bodies, research bodies, and some private bone fide groups like NGOs and DPOs.^[40]  The object of the data mining is to detect trends and underlying causes with a view to reform.^[41]

All these systems have their challenges.  But they at least show that it is possible to have a higher ambitions going beyond the investigation of individual instances to probing underlying systemic causes and to contributing to a process of change.  If Government is truly a ‘learning organisation’ then the data should not go to waste and should inform ongoing reform.

5. Summary of Conclusions & Recommendations of the IDA Study.

What conclusions are warranted by the above analysis and the IDA Study?

First of all, international standards on the proper investigation of ‘suspicious deaths’ have tremendous potential in the context of the deaths of marginalized populations even though they were not crafted with them in mind.  A field as technically distant and seemingly arid as the proper investigation of ‘suspicious deaths’ can meaningfully help advance the structural goals of the UN CRPD.

Second, the issue of the proper investigation of the deaths of persons with disabilities brings into focus the relationship between civil and political rights on the one hand (specifically the right to life) and economic, social, and cultural rights in the other (specifically the ‘conditions for life‘).  The otherwise abstract thesis about the interdependence and interoperability of both sets of rights is made vivid in the context of marginalized minorities such as persons with disabilities.  Both the African Commission and Court as well as the Inter-American Court specifically refer to the ‘conditions for life.’  This widens the lens to require investigatory bodies to examine underlying systemic causes that may well have been building up over a lifetime.  This is directly relevant to marginalised groups like persons with disabilities.

Third, there is a clear need for investigative mechanisms to go beyond narrow or purely medical explanations of death.  Much of the relevant international and regional standards and caselaw supports the proposition that investigators should be alert to underlying or systemic issues and report accordingly.  In this way, the knowledge loop can be closed, enabling and empowering the State to act to prevent future avoidable deaths.  The relevant information is a tool for the living as well as exhibiting respect for the dead.

The IDA Study concludes with some pointed recommendations aimed at States as well as at the UN and Regional human rights systems.  They are aimed at maximising the beneficial effects of the learning derived for the living.  Among them are the following.

Perhaps the most important set of recommendations have to do with States and law reform.  The IDA Study recommends that States follow the Minnesota Protocol and ensure that investigators have the leeway needed to probe underlying systemic causes and report back accordingly.  It points to the need for similar scrutiny when it comes to the mortality of carers.  It recommends that UN treaty bodies pay closer attention to the duty to investigate and that the UN Committee on the Rights of Persons with Disabilities should draft a General Comment on the right to life and disability.  It exhorts it to continue with its focus on institutionalization of persons with disabilities but complement that with a focus on the negative impact on morbidity and mortality of social isolation in the community due to poor services.

Another important set of recommendations are directed at researchers and research bodies.  The Study recommends more detailed research on the particular systemic threats to the mortality of different cohorts of persons with disabilities (e.g., those with psychosocial disabilities, those with mental health issues, etc). And it commends the trend toward more social epidemiology  – the study of the impacts of disadvantages in life on morbidity and mortality.

The IDA Study could be seen as an effort to break down fragmentation in international law and ensure that discrete sets of human rights standards (e.g., the UN CRPD and the Minnesota Protocol) work well together.  Hopefully, it will also inspire further efforts at gaining maximum traction from the Minnesota Protocol for other marginalized minorities such as older persons and indigenous persons.^[42]

 

* Former UN Special Rapporteur on the Rights of Persons with Disabilities, Affiliated Scholar, Raoul Wallenberg Institute (University of Lund, Sweden).

[1] Justice Committee, The Coroner Service, First Report of Session (House of Commons), 2021-2, at 185 (UK).  The report is available at: https://committees.parliament.uk/publications/6079/documents/75085/default/

[2] Much of the relevant caselaw and norms are brought together in the Minnesota Protocol on the Investigation of Potentially Unlawful Death (2016).  Despite its title, this is not an amending protocol to a treaty but is instead a series of policy guidelines to States when crafting their death investigatory mechanisms.  United Nations, Office of the High Commissioner, The Minnesota Protocol on the Investigation of Potentially Unlawful Death (2016), https://www.ohchr.org/sites/default/files/Documents/Publications/MinnesotaProtocol.pdf.

[3] For background to the Minnesota Protocol see Christof Heyns, Stuart Casey-Maslen, Toby Fisher, Sarah Knuckey, Thomas Probert & Morris Tidball-Binz, ‘Investigating Potential Unlawful Death under International Law: the 2016 Minnesota Protocol,’  52 The International Lawyer 47, 48-50 (2019).

[4] See generally Gerard Quinn, Inequality in Life and Death: The Duty to Investigate and Remedy the Systemic Causes of Deaths of Persons with Disabilities under International Law (International Disability Alliance), https://www.internationaldisabilityalliance.org/sites/default/files/documents/ida_global_study_-_inequality_in_life_and_death_0.pdf

[5] See generally, UN Special Rapporteur on the rights of persons with disabilities, Thematic Report, Protection of the Rights of Persons with Disabilities in the Context of Military Operations, (2022), A/77/203,  https://www.ohchr.org/en/documents/thematic-reports/a77203-report-protection-rights-persons-disabilities-context-military.

[6] See Geneva Academy-ICRC report, Investigating in Situations of Armed Conflict: Law, Policy and Good Practice, (2019), https://www.geneva-academy.ch/geneva-humanrights-platform/initiatives/detail/3-investigating-in-situations-of-armed-conflict-law-policy-and-good-practice.

[7] For a detailed account of the historic problems associated with the registration of the births of children with disabilities, see Women Enabled International, Submission to the UN OHCHR, Birth Registration for Children with Disabilities, https://womenenabled.org/wp-content/uploads/WEI%20OHCHR%20Submission%20on%20Birth%20Registration%20&%20Children%20with%20Disabilities%20Oct%2031,%202017%20FINAL.pdf

[8] Article 18 of the United Nations Convention on the Rights of Persons with Disabilities deals with liberty of movement and nationality.  Tucked away in Article 18.2 is a profound provision dealing with children with disabilities.  It is to the effect that “Children with disabilities shall be registered immediately after birth. and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible the right to know and be cared for by their parents.”  See generally the 2020 Resolution passed by the UN Human Rights Council on ‘Birth Registration and the Right of everyone to recognition everywhere as a persons before the law, A/HRC/RES/43/5: available at – https://docs.un.org/en/A/HRC/RES/43/5

[9] UN Special Rapporteur on Extra-Judicial, Summary or Arbitrary Executions, 2024 thematic report, Protection of the Dead, U.N. Doc. A/HRC/56/56 (Apr. 25, 2024).

[10] See NBC News Investigation Reveals Texas Medical School Leasing out Body Parts of Unclaimed Corpses, NBC News (Sept. 17, 2024), https://www.nbcnews.com/nightly-news/video/nbc-news-investigation-reveals-texas-medical-school-leasing-out-body-parts-of-unclaimed-corpses-219477573876.

[11] On the traditional roles of such investigatory bodies see Inquest, The Inquest Handbook: A Guide for Bereaved Families, Friends and Advisors (2016), https://www.inquest.org.uk/Handlers/Download.ashx?IDMF=e810c8c0-434f-4c13-adbd-d0308e128153.

[12] The “procedural dimension” of the right to life imposes a duty to investigate “suspicious deaths” lacking an obvious explanation, often arising in cases of disappearance with suspected killing. Failure to investigate adequately may constitute a distinct substantive violation of the right to life. The components of the duty to investigate are detailed in Minnesota Protocol, supra note 3.

[13] See, e.g., Australian Institute of Health and Welfare (AIHW), Report: Mortality Patterns among People using Disability Support Services (2018), https://www.aihw.gov.au/reports/disability/mortality-patterns-of-people-using-disability-serv/contents/summary.

[14]       U.N. Human Rights Comm., General Comment No. 36 (2018) on Article 6 of the International Covenant on Civil and Political Rights, on the Right to Life, U.N. Doc. CCPR/C/GC/36 (Sept. 3, 2019), https://undocs.org/en/CCPR/C/GC/36.

[15] Human Rights Committee, General Comment No. 36 on Article 6: Right to Life , U.N. Doc. CCPR/C/GC/36 (Sept. 3, 2019).

[16] For the background to the Minnesota Protocol see Heyns et al, supra note 3.

[17] The detailed Guidelines are contained in Part V of the Minnesota Protocol.  They cover matters such as Interviews, excavations of graves, autopsies, analysis of skeletal remains, etc.

[18] See generally, Janos-Fiala Butora, Disabling Torture: The Obligation to Investigate Ill-Treatment of Persons with Disabilities, 45 Columbia Human Rights Law Review 214-280 (2013); United Nations, Office of the High Commissioner, The Istanbul Protocol on the Effective Investigation and Documentation of Torture, and other Cruel Inhuman or Degrading Treatment or Punishment (2022), https://www.ohchr.org/en/publications/policy-and-methodological-publications/istanbul-protocol-manual-effective-0.

[19] The Minnesota Protocol uses the term ‘potentially unlawful death.’  At first blush this looks narrower than ‘suspicious death.’  However, it can still reach suspicious (but not unlawful) deaths since they are potentially unlawful.

[20] Validity on behalf of T.J. v Hungary, App. No. 31970/20 (October 10, 2024), https://www.echr.coe.int/w/judgment-concerning-hungary-3. .

[21] Quinn, supra note 4 at p. 69.

[22] Chinchilla Sandoval et al. v. Guatemala, Judgment, Inter-Am. Ct. H. R. (ser. C), No. 312 (Feb. 29, 2016).

[23] African Comm’n on Hum. & Peoples’ Rights, General Comment No. 3 on the African Charter on Human and Peoples’ Rights: The Right to Life (Article 4) (2015), https://achpr.au.int/en/documents/general-comment-no-3-right-life-article-4.

[24] Purohit and Moore v. The Gambia, Comm. No. 241/2001, Afr. Comm’n H.P.R. Dec. ¶¶ 1–2 (May 29, 2003), https://achpr.au.int/en/decisions-communications/purohit-and-moore-v-gambia-24101.

[25] Id. at ¶ 60.

[26] See Bnizchut, Summary of the Dotan Commission Report (2024), https://www.bizchut.org.il/post/summary-of-the-dotan-commission-report.

[27] See generally Harriet Perlman & Mark Lewis, Life Esidimeni: Portraits of Lives Lost (Jacana Media 2024).

[28] Health Ombuds, The Report into the Circumstances Surrounding the Deaths of Mentally Ill Patients: Gauteng Province—No Guns, 94+ Deaths and Still Counting (2016), https://section27.org.za/wp-content/uploads/2016/04/Life-Esidimeni-FINALREPORT.pdf.

[29] Families of Mental Health Care Users v. Nat’l Minister for Health, Arbitration Award (S. Afr. Arb. Mar. 19, 2018), https://www.youtube.com/watch?v=InQtYsktdfg (recording of hearing).

[30] Life Esidimeni Inquest, Case 2001/21 ((High Ct. S. Afr., Gauteng Div., Pretoria July 10, 2024).

[31] See generally Peter Apps, Show Me the Bodies: How We Let Grenfell Happen (Oneworld Publications 2022).

[32] A coroner had previously pointed out all the risks arising from a fire at Lakenal House (London) in 2009. See HM Coroner for Inner South London, Lakanal House Coroner Inquest (2013), https://www.lambeth.gov.uk/about-council/transparency-open-data/lakanal-house-coroner-inquest.

[33] The main advocacy group on persons with disabilities in social housing in the UK is CLADDAG. See Claddag, https://claddag.org/impacts/ ((last visited June 28, 2025).

[34] See Grenfell Tower Inquiry, Phase 1 Report (2019), https://assets.grenfelltowerinquiry.org.uk/GTI%20-%20Phase%201%20full%20report%20-%20volume%201.pdf; Grenfell Tower Inquiry, Phase 2 Report (2024), https://www.grenfelltowerinquiry.org.uk/sites/default/files/CCS0923434692-004_GTI%20Phase%202%20Volume%201_BOOKMARKED_0.pdf.

[35] Coroners Rules 1984, S.I. 1984/552, r. 43 (U.K.), https://www.legislation.gov.uk/uksi/1984/552/made.

[36] See Courts and Tribunals Judiciary, Reports to Prevent Future Deaths, https://www.judiciary.uk/courts-and-tribunals/coroners-courts/reports-to-prevent-future-deaths/ (last visited June 27, 2025).

[37] See Inquest, No More Deaths: Learning, Action and Accountability—the Case for a National Oversight Mechanism (2022), https://www.inquest.org.uk/Handlers/Download.ashx?IDMF=b480f898-7fbd-4c9c-a948-50dd3fad3a04.

[38] See Chief Coroner of England & Wales, Guidance No 5, Prevention of Future Death Reports (2020), https://www.judiciary.uk/guidance-and-resources/revised-chief-coroners-guidance-no-5-reports-to-prevent-future-deathsi/.

[39] NHS England, Learning from lives and deaths – People with a learning disability and autistic people (LeDeR), https://www.england.nhs.uk/learning-disabilities/improving-health/learning-from-lives-and-deaths/ (last visited June 27, 2025).

[40] See National Coronial Information System (NCIS), National Coronial Information System, https://www.ncis.org.au.

[41] National Coronial Information System (NCIS), Research, https://www.ncis.org.au/research-publications/research (last visited June 28, 2025).

[42] See U.N. Special Rapporteur on the Rights of Indigenous Peoples, Indigenous Persons with Disabilities, A/HRC/57/47 (2024), https://www.ohchr.org/en/documents/thematic-reports/ahrc5747-indigenous-persons-disabilities-report-special-rapporteur.