The Human Rights Model of Disability in Times of Triage

1. Introduction

When the COVID-19 pandemic hit the world, disabled people were among the groups across the globe who were hit the hardest. Worldwide, disabled people often live in poverty, many are institutionalized, and even more are dependent on social and health services to survive (Brennan 2020; Office of the High Commissioner for Human Rights 2021). While the 2006 Convention on the Rights of Persons with Disabilities (CRPD) is one of the most modern human rights treaties comprising a right to protection in emergencies, it was the least to be observed.

When medical resources became scarce, disabled people globally were confronted with the threat of triage. Originally developed for war medicine as a procedural guideline for deciding whom to treat if not all wounded soldiers can be treated (Brech 2008), later triage systems were developed in many countries in civilian settings, although no single system has been internationally adopted (Peta et al. 2023). During the COVID-19 pandemic, triage became an issue when intensive care units in hospitals did not have enough respirators and beds to treat all patients. This led to new triage protocols being developed in many countries. Triage protocols introduced prioritization criteria for access to respirators and beds in intensive care units based on utilitarian principles involving quality-of-life judgments, categorical exclusions, and survival. These criteria often involve prediction scales such as the Clinical Frailty Score (CFS) or Sequential Organ Failure Assessment (SOFA). Both scales have been criticized as intrinsically discriminatory and inappropriate for triage protocols (Chen & McNamara 2020; Felt et al. 2022; Zhu et al. 2022). Disability rights organizations protested at the national (Abrams & Abbott 2020; Arch Disability Law Center 2020; DREDF 2020; Guzmán 2023) and international level (Brennan 2020; EDF 2020; Mladenov & Brennan 2021).

2. Normative Legal Framework of the CRPD and the Human Rights Model of Disability

All of the human rights enshrined in the CRPD were affected, but most obviously, the right to be protected in times of emergencies (Art. 11), the right to accessible public information and accessible protection measures (Art. 9), the right to be protected against discrimination (Art. 5, 6), the right to health (Art. 25), and of course the right to life (Art. 10), in addition to many freedom rights which specify the autonomy principle enshrined in Article 3 of the CRPD. Since its establishment in 2009, the CRPD Committee has adopted many legal documents interpreting this legal framework. In its concluding observations, statements, general comments, and guidelines the Committee has shaped this legal framework by developing nuanced guidelines and recommendations for State Parties including the recent ‘Guidelines on deinstitutionalization, including in emergencies’ (CRPD Committee 2022). The new guidelines draw on the experience of disabled people before and during the COVID-19 pandemic which uncovered ‘widespread institutionalization, highlighting the harmful impact of institutionalization on the rights and lives of persons with disabilities, and the violence, neglect, abuse, ill-treatment, and torture, including chemical, mechanical and physical restraints, that they experience in institutions’ (CRPD Committee 2022). Further guidelines by the CRPD Committee will be available once the planned General Comment No. 9 on Article 11 CRPD (situations of risks and humanitarian emergencies) is adopted (CRPD Committee 2024).

In addition, the CRPD Committee has developed new legal concepts that help improve international human rights law canon. The impact of the CRPD on the modernization of international law has been widely acknowledged (Blanck & Flynn 2016; Oddný Mjöll & Quinn 2009). A contribution to human rights law and disability studies has been the human rights model of disability and related new concepts of equality and autonomy (Degener & Gómez-Carillo de Castro 2022).

The CRPD Committee utilized the terminology of the human rights model of disability when it started its work. On February 27, 2009, in its first declaration, it stated: ‘It recognizes the importance of the immediate transition from the medical model to the human rights and social model of disability in accordance with the Convention’ (CRPD Committee 2011). During its first decade, the CRPD Committee has used the term human rights model in many of its documents. However, the most nuanced description of the human rights model can be found in the Committee’s General Comment No. 6 on the right of disabled persons to equality and non-discrimination, which was adopted in 2018 during its 19th session. In paragraph 9 it reads:

The human rights model of disability recognizes that disability is a social contract and impairments must not be taken as a legitimate ground for the denial or restriction of human rights. It acknowledges that disability is one of several layers of identity. Hence disability laws and policies must take the diversity of persons with disabilities into account. It also recognizes that human rights are interdependent, interrelated, and indivisible. (CRPD Committee 2018)

Thus, according to GC No. 6, the human rights model of disability is based on a social construct notion of disability and it further adds a concept of personhood which demands that impairment may not be taken as an excuse for human rights violation. Personhood in this sense is related to the status of being human instead of having some functional capacity expected to be normal. According to the human rights model, Personhood means being a human rights holder and human rights agent. This is further explained in Article 3 of the CRPD, which contains the eight fundamental principles of the treaty. In particular the principles of respect for inherent dignity (Art. 3 (a)), the non-discrimination and equal opportunity principles (Art. 3 (b) and (e)), and the principle of respect for disability-related difference as part of human diversity and humanity (Art. 3 (d)) are expressions of the human rights model of disability (Arduin 2018). Personhood as understood in the light of these principles is based on a new understanding of autonomy that includes a variety of decision-making practices by human beings who are interrelated, interdependent, and social agents (Arstein-Kerslake 2017; Davy & Green 2022; Lid 2022; Quinn & Arstein-Kerslake 2012; Sépulchre 2022). Supported decision-making is the key word concerning legal capacity as enshrined in Article 12 of the CRPD. This modern understanding of legal capacity developed by the CRPD Committee in its General Comment No. 1 of 2014 has led to many law reforms in mental health and guardianship law and fierce legal, philosophical, medical, and social science debates. The traditional denial of moral status to persons with cognitive or psycho-social impairments in ethics and law has been the focus of this debate. Cognitive capacity and a standard account of rational decision-making are the pillars of an autonomy notion, that features an ‘atomic individual’ without social relations and dependencies. Feminist theorists have criticized this concept of autonomy as patriarchal and illusionary long ago (Kittay 1999). New concepts of ‘relational’ autonomy or ‘non-domination’ approaches have been proposed. In a similar vein, the liberal concept of political citizenship has been analyzed as ableist oppression based on the assumption of ‘compulsory cognitive capacity’ (Simplican 2015). While different in approach, these remodeled notions of legal capacity and citizenship have a common purpose. They seek to remedy the exclusion of cognitively impaired persons from the human right to autonomy and dignity in legal, political, or ethical theory.

While not yet coined in CRPD GC No. 1 of 2014, this new concept of autonomy can be termed inclusive autonomy. Inclusive autonomy is based on the human rights model of disability according to which human rights may not be limited or denied based on impairment. By contextualizing the full catalog of international human rights to the context of disability/impairment, the CRPD also sends a clear message that there is no standard way how to exercise human rights. Inclusive autonomy thus encompasses a range of decision-making, including supported decision-making. I propose the term inclusive autonomy rather than relational autonomy because of the related concept of inclusive equality, enshrined in the CRPD. The CRPD Committee uses this term in GC No. 6 and defines it as

a new model of equality developed throughout the Convention. It embraces a substantive model of equality and extends and elaborates on the content of equality in (a) a fair redistributive dimension to address socioeconomic disadvantages; (b) a recognition dimension to combat stigma, stereotyping, prejudice, and violence and to recognize the dignity of human beings and their intersectionality; (c) a participative dimension to reaffirm the social nature of people as members of social groups and the full recognition of humanity through inclusion in society; and (d) an accommodation dimension to make space for difference as a matter of human dignity. (CRPD Committee 2018)

Both inclusive autonomy and inclusive equality are the two fundamental pillars of the human rights model of disability and are crucial for a human-rights-based approach to triage.

The human rights model as applied to the context of COVID-19 triage means that impairment/disability may not be a legitimate ground for denying medical treatment and triage procedures need to adhere to the principles of inclusive autonomy and inclusive equality. Inclusive autonomy is essential in triage situations because it upholds the dignity and agency of every individual. During triage, when medical resources are scarce and difficult decisions must be made about who receives treatment, respecting the autonomy of patients is paramount. It means involving patients in the decision-making process to the extent possible, considering their preferences, values, and goals of care. Moreover, inclusive autonomy helps to address disparities in healthcare access and outcomes. Historically marginalized groups, such as ethnic minorities, LGBTQ+ individuals, and disabled persons, often face barriers to accessing healthcare and may experience discrimination within the healthcare system. Inclusive equality concerning triage means that all forms of discrimination need to be prohibited. In the context of triage, inclusive equality requires healthcare providers to consider the needs of all patients and allocate resources fairly and without bias. It means taking proactive steps to address systemic inequalities that may impact access to healthcare, such as poverty, racism, ableism, and sexism.

3. The German COVID-19 Triage Discourse and a Constitutional Court Decision

The debate about triage in Germany started in March 2020 when the Italian crisis of crowded crematoria reached the news. Pictures of military transporters with countless coffins flickered across the displays. Admission capacities in German intensive care units were extrapolated and reorganized. The German Interdisciplinary Association for Intensive and Emergency Medicine (Deutsche Interdisziplinäre Vereinigung für Intensiv- und Notfallmedizin – DIVI) was the first to advocate for treatment prioritization based on the prospect of success of the treatment in terms of survival probability and life expectancy. Their published corresponding guidelines (DIVI 2020) used the CFS metric to predict treatment success and prioritization. The DIVI guidelines also included a general commitment to the non-discrimination principle and disability was among the mentioned categories. The DIVI recommendations not only allowed for ex ante triage but also ex post triage. Ex ante triage means prioritization before treatment decisions have been taken. Ex post triage extends prioritization after treatment decisions have been taken which might lead to disconnecting a patient from the respirator. This would happen despite her good prospect of success because another patient has arrived, who is assessed as having an even better success rate, but there is still only one respirator.

Critical legal studies lawyers, the German Human Rights Institute, the Bochum Centre for Disability Studies (BODYS), and several Disability Rights Organizations, including some service providers criticized the DIVI recommendations as unconstitutional and in violation of German criminal law as well as international human rights law ratified by Germany (BODYS 2020a; DIMR 2020; Engländer & Zimmermann 2020; Fateh-Moghadam & Gutmann 2020).

It was argued that the DIVI guidelines violate the constitutional and criminal German law. Constitutional violations were found concerning rights to human dignity and equality. The German Constitution of 1949 reads in Article 1 (1): ‘Human dignity shall be inviolable. To respect and protect it shall be the duty of all state authority.’ And since 1994, the equality clause in Article 3 (3) of the Constitution has been amended with: ‘No person shall be disfavored because of disability.’¹ In Germany, the holocaust and the national socialist crimes are formative determinants for German constitutional law (Huber et al. 2024). In the context of triage, the German historical background evoked the memory of more than 300,000 disabled persons murdered during WWII in the T-4 – ‘Euthanasia’-program. The label of lebensunwertes Leben (live unworthy living) hung in the air, although not publicly debated in the mainstream domains. While most critics of the DIVI guidelines were careful not to evoke unjustified historical comparisons, the German triage debate has to be regarded with this historical background in mind. Utilitarian principles have a much harder time finding democratic consensus in Germany. In 2006, a famous decision of the German Federal Constitutional Court (Bundesverfassungsgericht (BVerfG)) concerning state power to counteract terrorist attacks affirmed: ‘Human life and human dignity enjoy regardless of the duration of the physical existence of the individual equal constitutional protection’ (BVerfG 2006: 132). It declared void a legislative act, the Aviation Security Act, which authorized the armed forces to shoot down aircraft that are intended to be used as weapons in crimes against human lives. Sacrificing the lives of some to save others’ lives was characterized as a violation of human dignity and the prohibition of discrimination in our constitution. The State must not sacrifice the lives of a few in favor of the lives of many others even in the hypothetical case of a shot-down hijacked plane that is directed into a housing estate. To sacrifice the seemingly already lost passengers based upon utilitarian considerations treated them as mere objects, which denies them the value that is due to a human being for his or her own sake (BVerfG 2006: 124). The German triage debate repeatedly referred to this Federal Constitutional Court decision.

Regarding the violation of German criminal law, the question was whether ex post triage was justifiable (Arnold 2023). Initially, the majority opinion was that ex ante triage might be justified as homicide by omission in emergencies and ex post triage was regarded as killing by active doing and therefore punishable by criminal law (Engländer & Zimmermann 2020; Fateh-Moghadam & Gutmann 2020). However, a year after the COVID-19 pandemic, many lawyers voiced their opinion to legalize ex post triage to save the greatest number of people in Germany (Hörnle 2021). This was supported by an early statement from the eminent German Ethics Council, a body of 26 experts from various disciplines such as law, philosophy, or theology appointed by the German Bundestag (federal legislator) and the Federal German Government. The German Ethics Council initially supported the DIVI guidelines in its first ad hoc recommendations. It pointed out that the State must not decide whose life should be considered as worth protecting and whose life should be sacrificed and that a classification based on age, social status, and its assumed ‘value’ or a predicted lifespan must also be omitted by the State. However, it put this decision in the hands of private medical associations. According to the Ethics Council, ‘the prohibition of state assessment does not entail that corresponding decisions cannot be accepted,’ making specific reference to medical associations which, ‘in the context of the above reason can and should provide important guidance which content-wise go beyond what would be permitted by the State’ (Deutscher Ethikrat, DER 2020: 3–4).²

In the early summer of 2020, nine disability rights activists filed a constitutional complaint for failure to legislate. The plaintiffs argued that they were at high risk of being left to die in the event of a shortage of medical resources. They demanded an order from the Federal Constitutional Court that the German legislator enact proper legislation that regulated triage decisions in a non-discriminatory manner. They asked that the legislators fulfil their constitutional and human rights duties to protect their rights to health and life.

The Federal Constitutional Court was in high demand because COVID-19 measures infringed upon many freedom rights of people living in Germany. After the first shock stiffness disappeared, German Courts were flooded with lawsuits. One of the main legal questions was, whether restrictive pandemic measures may be legitimized without a parliamentary decision. During the first wave of the pandemic, most state measures were regulated by simple regulations. This runs counter to the principle of subjection to the law, one of the essential German principles of the rule of law. Essential measures relevant to the fundamental rights of society must be regulated by the legislature itself. Thus, while the first pandemic measures were regulated by ministerial ordinances, the German legislator had to amend existing legislation—notably the Infection Protection Act of 2000 to provide solid legal grounds for mask duties, social distancing, curfew orders, and so on. Susanne Baer, one of the judges at that time said in an interview:

I have seldom worked as much as I have during this time, no decision has ever been made so quickly on a main issue, we have even brought forward two proceedings to speed things up, because before winter approaches it should be absolutely clear how far the legislator can go.³ (Wefing 2023)

One of the proceedings was the triage decision, which the FCC took on December 16, 2021. The FCC ordered the German legislator to pass triage legislation that protects disabled persons from discrimination in situations of shortage of intensive care resources due to the pandemic.

The order of the Federal Constitutional Court addresses the constitutional non-discrimination clause based on disability, Article 3 (3) Basic Law and takes the CRPD and General Comment No. 6 of the CRPD Committee into account (BVerfG 2021: 103). Article 3 (3) Basic Law was found to prohibit the State from directly or indirectly discriminating against disabled persons. It also demands that the State effectively protects disabled persons against third-party discrimination (BVerfG 2021: 97). The duty to take protective action may arise in situations where persons are subject to targeted exclusion, amounting to an attack on human dignity, or in situations of structural inequalities, or if exceptionally high-ranking rights, such as the right to life are at stake. The German legislator was found to have failed to take measures to ensure that no disability-based discrimination takes place in the allocation of life-sustaining treatment if shortages in intensive care resources arise (BVerfG 2021: 122–125). Therefore, it was found that the German legislator had violated Article 3(3) Basic Law (BVerfG 2021: 87). While the court found no constitutional harm in applying the criterion of clinical prospect of success in the sense of survival of the current disease, the DIVI recommendations were found to entail the risk of discrimination. This finding was based on structural inequalities in the German health care system, (unconscious) bias against disabled persons among medical personnel, and the application of scales such as the CFS, which carry the risk of associating disability stereotypically with comorbidity and poor recovery prospect. Therefore, the court said, it could not be ruled out that they could become a gateway for discrimination against disabled persons (BVerfG 2021: 118). At the same time, the German legislators were afforded leeway in designing the framework of protection. Their margin of appreciation and assessment was found to be broad (BVerfG 2021: 126–128).

Within the disability rights community, the court order was celebrated as a ‘milestone for the disability rights movement’ (Abilitywatch 2021). The hopes were high that the legislators would now enter into a constructive and participatory dialogue with civil society on human rights protection in times of crisis and emergencies. Among mainstream legal scholars, the court order was regarded more critically. An increasing number of lawyers, ethicists, and doctors argued for a more utilitarian approach, including legalizing ex-post-triage (Hörnle 2021). An alliance of disability rights and service providers organized a ‘Round Table Triage’ in May 2020 to initiate a broad public debate. But with the threat of a third world war, after the Russian war against Ukraine started on February 24, 2022, it was almost impossible to get media attention on such a complex ethical issue as triage.

4. The German Triage Act in Light of the Human Rights Model

When the federal health ministry presented its referendum draft of the triage law in June 2022, disability rights activists were shocked to see an opening clause for ex post triage. Then the discussion focused almost exclusively on this issue, while the broader context of disability discrimination in the allocation of scarce intensive care resources got lost. When the governmental cabinet draft of the law was presented to the federal parliament in August 2022 the opening clause for ex post triage was gone, due to vehement protest from the disability and human rights communities. The following legislative reading period then was short and without much public notice.

The German Bundestag passed the triage law a year after the court order by amending the German Federal Infection Protection Act. The amendment entered into force on December 8, 2022 (Deutscher Bundestag 2022b). Its main section, §5c regulates the procedure to be followed in the event of insufficient survivable intensive care treatment capacity due to a communicable disease. The Section has five sub-paragraphs which entail (1) an anti-discrimination clause, (2) criteria for the allocation decision, (3) qualification requirements for the two doctors who take the allocation decision, (4) documentation requirements, and (5) duties for intensive care hospitals to establish, ensure, and annually review the allocation process.

The first two sub-paragraphs read:⁴

1. No person shall be discriminated against in a physician’s allocation decision based on a communicable disease of insufficient survivable intensive care treatment capacity (allocation decision), including, but not limited to, disability, degree of frailty, age, ethnicity, religion or belief, gender, or sexual orientation.

2. An allocation decision may only be made on the basis of the current and short-term survival probability of the patients concerned. Comorbidities may only be taken into account in the assessment of the current and short-term probability of survival if, due to their severity or combination, they significantly reduce the short-term probability of survival related to the current disease. Criteria that do not affect the current and short-term probability of survival, such as particular, disability, age, remaining medium- or long-term life expectancy, degree of frailty, and quality of life, may not be considered in the current and short-term probability of survival. Survival intensive care treatment capacities already allocated are excluded from the allocation decision.

The legislative act prohibits basing allocation decisions on disability and thus prima facies prevents ‘discriminatory denial of health care […] on the basis of disability’ (Article 25 (f) CRPD). By including ‘degree of frailty’ as a protected category, the law also outlaws the use of metrics like CFS which have a disparate impact on disabled persons in triage decisions. The German legislator made this explicitly clear in the explanatory memorandum to the law (Deutscher Bundestag 2022a). By excluding ‘survival intensive care capacities already allocated’ the legislator also outlawed ex post triage.

But does the German triage law fulfill the requirements of the human rights model, that is, inclusive equality when it allows comorbidities as an assessment factor for the prediction of survival for the current disease? Since more disabled (and older) persons have comorbidities than nondisabled persons (World Health Organization 2011, 2020) a higher number of disabled persons compared to the general public will not be chosen for treatment if the triage decision can be based on comorbidities that affect the current or short-term probability of survival. Thus, the German triage law has a disparate impact on disabled persons. As explained by the CRPD Committee, inclusive equality prohibits all forms of discrimination, including indirect discrimination (CRPD Committee 2018: 18). By allowing the triage decision to be based on comorbidities the law falls short of prohibiting all forms of discrimination.

One might argue that this indirect discrimination is justified because triage decisions have the legitimate purpose of fairly distributing scarce medical resources in times of emergency. If comorbidities or impairments are only to be considered for their short-term effect on the prospect of treatment survival. In that case, it seems fair to accept that this procedure has a disparate impact on some persons. This argument has been put forward by several authors as the least discriminatory regulation (Bagenstos 2020; Bílková 2023). While Bagenstos opts for a very narrow exemption in cases where the ‘underlying disability will kill the individual in the immediate term regardless of the treatment’ (Bagenstos 2020: 1) others take a more lenient stance towards rationing. Indeed, taking into account that other COVID-19 triage regulations are based on more radical discriminatory criteria, such as quality of life judgments, clinical tools like CFS or SOFA, age, or certain medical diagnoses, one might find the German triage law to be one of the best. Bílkóva, who has offered a laudable human-rights-based analysis of 11 triage guidelines in 8 European and 3(4) non-European countries, comes to this conclusion (Bílková 2023). Although her analysis focuses on age discrimination it gives a useful oversight of different models of triage protocols. She identifies three different models. The first model of triage guidelines excludes older persons from treatment based on the assumption that they have a lesser likelihood to benefit from treatment and life expectancy. Italy became famous during the pandemic for adopting triage guidelines based on this Model 1. As Model 2 she identifies guidelines that prioritize medical treatment according to the likelihood of benefitting from the treatment due to medical factors. Age is used as an additional tiebreaker when the main criterion fails to solve the triage situation because there are still too many patients needing treatment. South Africa is identified as one of the countries adopting Model 2 guidelines. Model 3 guidelines are triage guidelines that explicitly reject age as a determining factor at any stage of the triage. As an example, the German triage law is mentioned (Bílková 2023: 21–22). According to her human rights analysis Model 3 guidelines are acceptable from an international human rights perspective since they pass the relevant non-discrimination test as the most fundamental human rights principle. Although indirectly discriminatory, the German guidelines can be seen as justifiable in extreme situations as proportionate means to serve the legitimate aim of saving as many persons as possible with limited resources (Bílková 2023: 28).

While it can be agreed that the German triage law is modest compared to other triage models, it is still discriminatory. Taking short-term effects of comorbidities into account when allocating medical resources puts more disabled persons than non-disabled persons at the end of the waiting list. This is discriminatory even if one argues that ‘as a group’ disabled persons would benefit because more lives overall would be rescued, including disabled lives (Mello, Persad & White 2020). This premise of ‘evidence-based triage’ (Persad 2020) waits to be proven, but it is not compatible with human rights law which protects the individual disabled person. It simply does not matter if other disabled persons are saved. Human rights have the purpose of protecting individual persons.

In comparison to older persons who are not yet protected by a binding group-focused human rights treaty, disabled persons have the CRPD. As the most modern human rights treaty of the United Nations, the CRPD has introduced a new concept of non-discrimination based on inclusive equality as elaborated above. Concerning disability, triage regulations do not only have to pass the general standard non-discrimination test of international human rights law to which Bílková refers. The non-discrimination standard of the CRPD is much stricter. As outlined above, the legal framework of the CRPD does not contain a derogation clause but demands specific protection in emergencies (Article 11 CRPD) and strictly prohibits withholding medical treatment based on disability (Article 25 CRPD).

While the strategic litigation before the Federal Constitutional Court of Germany succeeded in an anti-discrimination clause applicable in times of pandemic, the law falls short of protecting disabled persons against all forms of triage discrimination. Only direct disability-related discrimination has been outlawed. Indirect discrimination based on comorbidities or similar reasons is restricted but not prohibited by the act. As a result, a higher number of disabled persons compared to the general public will not be chosen for treatment. This is particularly true if we take into account the ableist attitude of many doctors against disabled persons (Haque & Stein 2020; Shakespeare, Iezzonim & Groce 2009; Stramondo 2021). The 2019 report on ‘Impact of ableism in medical and scientific practice, research and experimentation’ by the UN Special Rapporteur on the Rights of Persons with Disabilities (Devandas-Aguilar 2019) gives ample evidence and similar research findings for Germany have been acknowledged by the Federal Constitutional Court in its triage decision (BVerfG 2021: 113). The Court further demanded that German legislators protect disabled persons against structural discrimination, a requirement that the bill does not fulfill. The German triage law does not protect against ‘triage before the triage’ or ‘silent triage.’ Triage before the triage happened in Germany and elsewhere when hospitals denied admission to disabled patients because they allegedly were not equipped to deal with their impairments. Silent triage happened when disabled persons were advised to sign ‘do not resuscitate orders.’ It was amazing to see how quickly those documents were available in accessible formats, compared to the time it took to provide accessible life-saving information.

The German Federal Constitutional Court referenced the CRPD – Committee’s notion of inclusive equality several times in its triage decision. This, together with the fact, that the court decision introduced the term ‘ableism’ and ‘human rights model of disability’ into German constitutional legal discourse, are some of the highlights of the strategic litigation results. This victory of the disability rights movement cannot be recognized enough. From the perspective of legal disability studies, it is probably one of the best Federal Constitutional Court decisions we ever had in Germany. However, the victory did not extend to the legislative result, the German Triage Act. A human-rights-based triage law would have been based on the random principle as the only non-discriminatory solution when the principle of urgency does not apply. The random principle means selecting patients on a lottery- or first-come-first-serve basis. Several experts, the German Human Rights Institute, and disability rights organizations proposed the random principle as tiebreakers, that is after other non-discriminatory criteria have been applied and there are still too many patients in need of treatment (BODYS 2020b; DIMR 2021; Engländer & Zimmermann 2020; Fateh-Moghadam & Gutmann 2020).

The randomization principle is met with skepticism. It is argued that it conflicts with the most effective use of scarce resources and prevents individualized assessment. As a result, more disabled persons would die (Persad 2020). However, the randomization principle only applies after an individualized assessment has been made, that a patient would benefit from treatment. If an individual does not benefit from the treatment, the randomization principle puts that person outside the lottery. The randomization principle is less favored because it is an example of ‘formal equality.’ After all, every human being is formally treated the same. Neither sex, ethnic background impairment, nor other dimensions are taken into the equation. In modern disability law, we usually feel uncomfortable with formal equality and we point to reasonable accommodation and accessibility as concepts not included in formal equality. Because barriers need to be taken down to provide equal opportunity, we usually want impairment to be taken into the equation. Only then we can say: that denial of reasonable accommodation is discrimination. So why now in the context of triage ask for formal equality? The answer is: that is what inclusive equality is about. All four dimensions need to be taken into account: (1) the disadvantage dimension, as much as (2) the recognition dimension, (3) the participation dimension as well as (4) the accommodation/adaptation dimension. Utilizing the random principle in triage decisions in times of shortage of resources addresses the recognition dimension to combat stigma, stereotyping, and prejudice and to recognize the dignity of all disabled persons. This is also an example where the models of inclusive equality and inclusive autonomy intersect. The human rights model of disability is linked to this concept of personhood.

To consider all four dimensions of the inclusive equality model in the context of triage, more requirements than utilizing the random principle have to be applied. Because disabled persons are often the last to arrive at hospitals, due to inaccessibility and other socio-economic disadvantages, hospitals need to have an accessibility and outreach plan. Triage protocols have to be developed and monitored with the effective participation of organizations of disabled persons. In individual cases, reasonable accommodation provisions have to be applied. The German legislators were provided with corresponding draft proposals from the disability rights movement and their allies. However, these draft bills did not make it into German law.

In August 2023 the CRPD Committee reviewed Germany for the second time since it became a member state to the CRPD in 2009. The German triage law was a topic in the dialogue between the German government delegation and the CRPD Committee. In its Concluding Observations, the CRPD Committee expressed its concerns that the German triage law might violate the right to life (Art. 10 CRPD) because the triage criterion of ‘actual or short-term probability of survival’ may indirectly discriminate against disabled persons. The Committee recommended a review of the new federal triage law and suggested enacting a law that effectively prevents any direct or indirect disability discrimination (CRPD Committee 2023: 21–22).

According to the explanatory memorandum, the German Triage Act is to be evaluated three years after it came into force. The aim is to examine whether the risk of discrimination in allocation decisions has decreased and whether legal certainty for doctors has increased (Deutscher Bundestag 2022a: 27). The evaluation will hopefully be undertaken in line with the CRPD, which means in close consultation with and active involvement of disabled persons and their representative organizations (Art. 4 (3) CRPD).

5. Conclusions

The German triage law violates the CRPD and its human rights model of disability. The human rights model of disability is paramount for regulating the allocation of scarce medical resources in times of emergency. It prohibits all forms of discrimination against disabled persons in triage regulation, including taking the short-term effects of comorbidities on life expectancy into account.

The human rights model has taken shape in the legal practice of the CRPD Committee over the last 10 years. As several disability studies scholars have analyzed, this was in stark contrast to the drafting history of the treaty, during which only the social model of disability was used as a point of reference (Kayess & French 2008; Traustadottir 2009; Trömel 2009). There are opposite views among disability studies scholars, whether this change in terminology from the social model of disability to the human rights model of disability reflects a development in disability studies. I have been one of those who have published about the distinction between the social model of disability and the human rights model of disability. In 2016 I opined that the human rights model goes beyond the social model and manifests an improvement of the latter (Degener 2016). Lawson and Beckett countered my ‘improvement thesis’ with a ‘complimentary thesis,’ arguing that both models complement each other and have different objects and purposes (Lawson & Beckett 2020). When I developed my six propositions on the distinction between the social model and the human rights model of disability, I was more interested in shaping the human rights model of disability as a concept of legal disability studies. In that regard I now conquer with Lawson’s and Beckett’s ‘complimentary thesis’ in that both, the social model and the human rights model are useful paradigms in disability studies. However, I do not agree, that the first is a model of disability and the second is a model of disability policy. Disability policy is the subject of what we call the human-rights-based approach to disability which is frequently confused with the human rights model. The human rights model addresses the concept of disability because it offers a concept of personhood which is based on inclusive autonomy and inclusive equality. Both models are models of disability. They complement each other in that the social model is more analytic–descriptive, whereas the human rights model is more normative.

The triage debate in the COVID-19 pandemic has demonstrated that in times of emergencies, the medical model of disability flourishes because we live in ableist cultures and ableist economics. The impact of ableism on triage guidelines could be detected in assumptions about the health status, quality of life, and social utility of disabled persons (Scully 2020).

Triage guidelines and laws need to be based on the human rights model of disability and its two pillars—inclusive autonomy and inclusive equality to prevent those assumptions with their potentially catastrophic consequences.

Competing Interests

The author has no competing interests to declare.