1 Preliminary remarks: a new approach to disability
The UN Convention on the Rights of Persons with Disabilities is universally recognized as a turning point in the social and legal thinking about disability.[2] Centered on the full and unconditional respect of the inherent human dignity of each and every member of the human family, the Convention develops a new definition of disability, promotes and defends the rights of people with disabilities and fosters a culture more respectful of all human persons, regardless of their condition. It engages all social and institutional actors in advancing inclusivity and reducing discrimination, prejudice, and stigma.[3] From the legal perspective, this new understanding of disability has brought about important changes that are unprecedented.
In fact, not only did the UN Convention put disability in the framework of the human rights discourse,[4] but it also provided for a new understanding of disability as such, that has slowly been integrated in the legal systems, starting from the European one.
The new understanding of disability enshrined in the Convention since its Preamble, and repeated in its first article, states: “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”.
Disability is not a physical, mental or sensorial impairment as such. An impairment, a weakness or a disfunction becomes an issue of disability in the interaction with the surrounding context, where barriers and obstacles become an impediment to social participation.[5] Therefore, disability cannot be treated only as a pure medical problem and does not define the person;[6] it is also a social problem that calls for medical as well as social answers. Disability is neither an exclusive medical nor social issue, it is rather a relational problem, one that arises from the interaction between a medical and a social condition.
This new social, or rather bio-social, understanding of disability has struggled to gain acceptance in legal practice.[7] Yet the evolution is clear and evident, especially in Europe, where a dramatic change has been brought about by the Court of Justice of the EU,[8] since the Union itself became part of the UN Convention.
On the one hand, the UNCRPD has broadened the notion of disability, the borders of which are yet to be defined (see par. 2); on the other hand, the new understanding of disability imposes new positive obligations to remove or reduce barriers to give value to all the residual resources and capabilities of the persons with disabilities in order to support their full participation and inclusion in social life. This evolution generated a development of new legal instruments, the most relevant of which is the reasonable accommodation and policies of support, which will be explored in the following pages. All in all, the new understanding of disability has, over time, revealed that a comprehensive approach to disability entails not only a number of individual rights, but also a good set of human and social relations.
2 On the borders of disability: infertility, obesity, drug and alcohol addiction
Notwithstanding the general consensus reached on the notion of disability as defined by the UN Convention, the external borders of the new understanding of disability are not always clear and some disputed areas are emerging, among which: infertility, obesity and – most relevant – drug and alcohol addiction.
On infertility, the Court of Justice of the EU excluded the applicability of the labor law legislation on disability rights in the Irish case Z v. A Government department (2014).[9] The case concerned a woman who was without uterus and who wanted to have a baby through a surrogacy arrangement. She applied for leave equivalent to maternity or adoption leave. The Irish Government department and the Board of management of a community school refused to grant Ms. Z. paid leave equivalent to maternity leave or adoptive leave following the birth of that child. The Court noted that her inability to have a child by conventional means did not prevent her from having access to, participating in, or advancing in employment. Consequently, it held that her condition did not constitute a disability within the meaning of the EU legislation and concluded that “the refusal to provide paid leave equivalent to maternity leave or adoptive leave to a female worker who is unable to bear a child and who has availed of a surrogacy arrangement does not constitute discrimination on the ground of disability”.
Less sharp was the position of the Court concerning obesity. In fact, in Kaltoft v. Kommunernes Landsforening (KL) (2014)[10] the Court considered that, whereas obesity as such cannot be considered as a form of disability, yet, under certain conditions - such as when obesity results in reduced mobility or medical conditions that hinder a person’s ability to work or cause discomfort during professional activities - it can be recognized as a form of disability.
It is worth noting that this case gave the opportunity to the Advocate General to express his opinion about the possibility to extend the definition of disability also to cases of alcohol or drugs assumption, about which he concluded that “in medical terms, alcoholism and addiction to psychotropic substances are diseases. This does not, however, mean that an employer would be required to tolerate an employee’s breach of his contractual obligations by reference to these diseases”.[11]
Around drug addiction as a form of disability, the debate is open and it involves scholars and Courts, with different, and even opposite conclusions.[12]
For example, Canada has been one of the first countries to explicitly include drugs and alcohol addiction into the definition of disability contained in the section 25 of the Canadian Human Rights Act (1985).[13] Similarly, in Australia some labor judgements considered that the condition of a former heroin addict, who has been on methadone since many years falls under the definition of disability.[14]
On the opposite, the UK does not include drug and alcohol addiction within the definition of disability with the consequence that, in case of disclosure of an addiction in the hiring process, potential employees have no protection under the UK Equality Act (2010).[15]
The notion of disability has been stretched and has reached some very sensitive limits, where the consensus among the different jurisdictions is yet to be found. All these problems under discussion are indeed very relevant from the social point of view. The problem with obesity, drugs, alcohol, gambling and other forms of addictions is where to draw a distinction between cases where medical evidence proves that the mentioned conditions are beyond the individual control, from cases that results from voluntary behavior and are due to lifestyle choice. In some countries,[16] this distinction is relevant to decide whether the case is covered by the disability legislation.
3 Reasonable accommodation and policies of support
The UN Convention’s perspective on disability has fueled a new search for more appropriate legal instruments, capable of respecting and promoting a culture of human dignity of people with disabilities. Indeed, law alone cannot do all that is necessary to create empathic and supportive living conditions for persons with disabilities. Social norms and widespread cultural attitudes are crucial for their effective respect and care. Yet, law can influence the broader context, and an inadequate legal approach can do wrong and perpetuate a biased and hostile society to disability. So, without over-emphasizing the role of law in addressing issues related to disability, it is relevant to discuss the suitability of the available legal instruments.
One of the most innovative tools introduced by the UN Convention is reasonable accommodation, which over time has become a cornerstone in legislation pertaining to individuals with disabilities. This instrument has proved to be one of the most effective as well as one of the most flexible and suitable to improve the inclusion and full participation of persons with disabilities in social life. In fact, the UN Convention requires much more than refraining from open, direct discrimination against people with disabilities. Nor are the traditional economic benefits, social services or medical treatment usually provided by the legislation on this matter sufficient. The effort required by the Convention is to remove as much as possible the factual barriers that in the “standard” daily life in fact hinder the participation of the person with disability in social life. Accommodating the conditions of life in order to remove or to reduce impediments for people with disabilities is at the heart of this innovative legal instrument.
Reasonable accommodation has been successfully experimented in cases of physical disability, but the same rationale can lead to similar approaches for accommodating the needs of mentally disabled people.
The reasonable accommodation method echoes one of the most important provisions of the Italian Constitution (1948). In fact, art. 3, second paragraph, reads: “It is the duty of the Republic to remove those obstacles of an economic or social nature which constrain the freedom and equality of citizens, thereby impeding the full development of the human person and [her] effective participation […] in the political, economic and social life”. Indeed, this provision was written long before the UN Convention, and it is not specifically targeted towards persons with disabilities. Rather it has a broader and more general scope. Its rationale is to address all conditions of social and economic disadvantage suffered by any vulnerable group or individual, in a very concrete and proactive manner. It is worth underscoring that this provision calls for a collective effort, engaging the entirety of the Republic in its multiple articulations, including institutions and civil society, to take responsibility to support disadvantaged persons in order to enhance the quality of social life for all. The Italian Constitution does not explicitly employ the term reasonable accommodation, but it does lay the groundwork for extensive utilization of positive measures to achieve substantive equality. In essence, reasonable accommodation finds its roots in a substantive interpretation of the principle of equality, requiring not only to refrain from direct or indirect discrimination, but also to take positive action to level the ground for people with any kind of impairment.
From a historical point of view, as previously mentioned, reasonable accommodation originated in Canadian antidiscrimination law. It requires employers, landlords, public and private service providers to accommodate the needs of individuals, in order to ensure that they can enjoy equal opportunities in social life. This could mean, for example, permitting an employee not to work on a religious holiday or creating an appropriate workplace for a person with a physical disability. In Canada, reasonable accommodation applies to all forms of discriminations, such as those based on sex, gender, ethnic origin, color, age religion, etc., and, indeed, disability. It is widely applied in labor law, but has a lager scope of application.
The leading cases in the Supreme Court jurisprudence are Meiorin[17] and Grismer.[18] In the first case, the Supreme Court ruled that the physical fitness standards imposed in British Columbia for some jobs were discriminatory against individuals with disabilities, as they were not reasonably necessary for the job in question and did not accommodate the needs of employees with disabilities. In Grismer, the compliant had suffered a stroke and was in a condition that impaired his peripherical vision. His driver’s license was cancelled because he was no longer meeting the prescribed minimum field of vision of 120 degrees. The Canadian Supreme Court ruled that the 120-degree vision standard was not reasonably necessary in all situations and prescribed that an accommodation was to be found.
According to this jurisprudence, in Canada employers are required to make every reasonable effort to accommodate an employee with disabilities. This responsibility to “accommodate” requires the employer to look at all other reasonable alternatives. The employer must try to accommodate up to the point of “undue hardship”. To prove that his or her accommodation efforts were serious and conscientious, an employer is required to engage in a four-step process: “(i) Determine if the employee can perform his or her existing job as it is. (ii) If the employee cannot, then determine if he or she can perform his or her existing job in a modified or ‘re-bundled’ form. (iii) If the employee cannot, then determine if he or she can perform another job in its existing form. (iv) If the employee cannot, then determine if he or she can perform another job in a modified or ‘re-bundled’ form. The limit is a disproportionate or undue burden implying excessive economic or organizational or safety costs. If the accommodation requires an overburden on one part, it cannot be requested”.[19]
Eventually, reasonable accommodation became very influential in American law with the American with Disabilities Act (ADA) of 1990. Not surprisingly, then, at the time of the negotiations of the UNCPRD, reasonable accommodation was at the center of the legal framework. According to the definitions provided by the UN Convention, art. 2: “‘Reasonable accommodation’ means necessary and appropriate modification and adjustments [of the environment] not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms”.
A similar definition is provided by EU Directive 78/2000/CE, art. 5 Reasonable accommodation for disabled persons: “In order to guarantee compliance with the principle of equal treatment in relation to persons with disabilities, reasonable accommodation shall be provided. This means that employers shall take appropriate measures, where needed in a particular case, to enable a person with a disability to have access to, participate in, or advance in employment, or to undergo training, unless such measures would impose a disproportionate burden on the employer. This burden shall not be disproportionate when it is sufficiently remedied by measures existing within the framework of the disability policy of the Member State concerned”.
4 Elements for a theory of reasonable accommodation
There are some features of the model of reasonable accommodation that are worth underscoring.
First, the duty to accommodate is an obligation for public as well as private actors: reasonable accommodation is widely applied in labor law, so that the duty to accommodate falls, first of all, on employers; yet the same duty obligates local and national institutions, schools and other educational facilities, sport facilities, movie theaters, commercial activities, music institutions, prisons and any other social infrastructure. Removing barriers is a collective community effort, involving public institutions as well as private economic and social actors. For example, in the Cam v. Turkey case (2016),[20] the European Court of Human Rights addressed the refusal to enroll the applicant as a student at the Turkish National Music Academy because she was blind. The applicant was completely qualified for admission to the academy, and the refusal had been based solely on her disability. Therefore, the Court considered that the failure to provide reasonable accommodation to facilitate access for persons with disabilities to education constitutes a form of discrimination on grounds of disability.[21]
Many cases decided by the ECtHR concern people with disabilities in prison. Just to provide one example out of many, consider the case of Grimailovs v. Latvia (2013)[22] where the Court found that the absence of independent access to prison facilities for the paraplegic prisoner, along with the lack of organized assistance regarding his mobility and daily routine, amounted to degrading treatment. The reasoning of the Court relied on the duty to find a reasonable accommodation, as required by the UNCRPD, and considered that the failure of looking for a reasonable accommodation amounted to a violation of the European Convention. Incidentally, we can note that the imprisonment of persons with disabilities is increasingly contentious, raising the question of whether it is at all possible to accommodate the needs of people with disabilities, especially mental disabilities, in a jail setting.[23]
These are just a couple of examples, among many, to have a sense of the broad scope of reasonable accommodation and the number of subjects addressed by the duty to accommodate.
Second, as illustrated by the cases mentioned above, the unjustified refusal to provide accommodation is considered a form of discrimination or even a more severe violation of human rights. The UN Convention expressly provides in this sense (see art. 2 and art. 5) and the jurisprudence of the European courts consistently applies this principle.
A good example is the case of the CJEU, European Commission v. Italian Republic.[24] The Commission considered that the Italian system of promoting the employment integration of disabled people was essentially based on a set of incentives, facilitations and initiatives by the public authorities. This was not enough because the Italian legislation does not require the employers to look for reasonable accommodations for people with disabilities: “By failing to require all employers to provide, in accordance with the needs of the specific situations, reasonable accommodation applicable to all disabled persons, the Italian Republic has failed to fulfil its obligation to transpose correctly and completely Article 5 of Council Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment and occupation”.
In the same vein, the ECtHR considers that the failure to require reasonable accommodation amounts to a violation of the principle of non-discrimination and other human rights.
Just to add an example, in Guberina v. Croatia (2016),[25] the applicant had requested a tax exemption on the purchase of a new property adapted to the needs of his severely disabled child. The authorities did not take into consideration his son’s particular needs and found that the applicant was not entitled to the tax exemption because they already had a suitable place to live. The ECtHR stressed that principles of reasonable accommodation, accessibility and non-discrimination against persons with disabilities required to consider the specific needs of the applicant’s family related to his child’s disability. Ignoring these specific needs amounted to a violation of human rights and non-discrimination.
Third, one of the distinctive features of reasonable accommodation is that it triggers a process of dialogue between the parties involved, rather than prescribing an outcome predetermined by the law. The results of the process can vary case by case: sometimes it can achieve the expected results, in other cases the request proves to be impossible or overburdening. The result of a reasonable accommodation cannot be pre-established by law. The law is prescriptive in that it mandates to start a process and sets some essential rules of the game: but the solution is to be found in dialogue with all the parties involved. What is relevant is that “it calls upon the parties involved to be creative and sincere in negotiating and finding solutions”.[26] In a word, the obligation does not entail to reach a specific result, but it does entail to make a genuine effort.[27] This is an interesting aspect of this legal instrument, because reasonable accommodation urges the parties to engage in a relationship: the duty holder and the individual seeking an accommodation are expected to work together, to develop a mutual understanding of the reciprocal needs and constraints and to get to a solution that can be reasonable for all the parties. When an accommodation is offered and it is reasonable, the individual cannot reject that offer in search of a better solution. The duty to accommodate is not about finding the best possible accommodation, but about finding an accommodation, reasonable for all the parties involved. The reasonable accommodation reflects an idea of legislation that not only provides rules, rights, obligations and sanctions but takes care of personal relations and put them at the center. It is based on a paradigm of trust[28] in social relations, rather than distrust and coercion.
Fourth, the goal of providing accommodation is usually achieved through practical adjustments to material conditions, such as removing architectural barriers and reducing workload or working hours. Yet, in some cases, providing accommodation requires implementing a policy of support, especially for individuals with mental disability. Paradoxically, the individual autonomy and independence of persons with disabilities, which is one of the main goals of the UNCRPD (see for example art. 3, 12 and 19) often requires personal support. Make no mistake: a policy of support should not be confused with the old-fashioned, paternalistic approach based on a paradigm of substitution. Support does not mean substitution: “the support paradigm is a system in which people work together to understand an individual’s desires and choices and then provide the means for that person to exercise legal capacity and live life the way they choose as opposed to a way imposed by someone else’s decision”.[29]
A couple of examples taken from the Italian legal system may serve as a good exemplification of this understanding of autonomy with support, but similar approaches are developing everywhere under the influence of the UN Convention on disability rights.
In Italian schools, students with disabilities or other specific needs are indeed located in schools with all the other students, but they are supported by a tutor, called “insegnante di sostegno”, a support teacher whose mission is to assist these students in participating in classes alongside their peers. Out of a total number of 950,000 teachers in Italy, 200,000 serve as support teachers, catering to around 300,000 students with disabilities.[30] A good idea would be to replicate this in the field of employment: some persons with disabilities might need a tutor in order to discharge their duties at work.
This support-based model is mirrored in law n. 6 of 2004, which introduces an “amministratore di sostegno”, typically a family member, or a friend, designated by the interested person, tasked with the responsibility of acting as a caregiver, or support administrator, for the elderly and the disabled.[31] These support figures can also be appointed to assist for temporary difficulties. Their role and competence are defined on a case-by-case basis, under the supervision of a judge. This institution is tailored on the specific situation:[32] their presence alongside the person in need preserves their remaining capacity to make their own choices, empowering the disabled person to be the protagonist of their own life.[33]
These examples serve as compelling illustrations of a pragmatic approach to respect the independence and autonomy of people with disabilities: autonomy is not equated to complete self-sufficiency; it often necessitates support or stewardship without crossing the line into substitution. The support paradigm fosters social solidarity without sacrificing the recognition of the dignity and the capacities. It removes the illusion of self-sufficiency and opens the door for a societal dialogue about the inter-independence of all persons.
Fifth, reasonable accommodation does not overlook the costs – of whatever nature – imposed on the duty holder. In fact, it imposes an obligation to accommodate, short of undue hardship. The accommodation required by the legislation is qualified as reasonable, because it takes into account the context and the constraints deriving from economic issues and social relations. Indeed, there is no standard definition of what amount is required to undue hardship, yet the case law – especially in Canada – has set out a number of factors that must be considered. They include the financial costs to an organization or to an individual, provided they reach a substantial amount; the risks for health and safety of the disabled person, of other fellow employees and the general public; and indeed, any other conflicting right. In this respect the keyword as in any other case of clashes of rights is proportionality.[34]
An example is provided by an Icelandic case decided by the ECtHR[35] concerning a person paralyzed from the chest down and who uses a wheelchair for mobility. The applicant complained about a lack of wheelchair access in two buildings housing arts and cultural centers run by his municipality. In this case, the Court was persuaded that the lack of access to the buildings in question did not amount to a discriminatory failure to accommodate the needs of the appellant. The Court notes, in this regard, that considerable efforts have been made by the municipality to improve accessibility to public buildings and buildings with public functions, within the confines of the available budget and having regard to the cultural heritage protection of the buildings in question. Therefore, the Court concludes that the applicant was not discriminated against.
The sixth feature of reasonable accommodation is that it always requires case-by-case solutions rather than general rules and general standards. Disabilities can hardly be approached with one size fits all measures. Persons with disabilities need tailored suits.
The reason is simple and yet often overlooked. In her eye-opening work, Matilde Leonardi says that disability is a continuum.[36] And in fact, the border between functionality and disability is blurred. All people can be located along this continuum between very low and very severe disability, and this becomes all the more evident in the context of an aging population.[37] Furthermore, no single person with disabilities is similar to the next. Nor are the social conditions where she lives. That is why it has been said convincingly that “disability is not a social category: there are no such things as disabled people […]. Rather, there are people with disabilities, i.e. children, men, women who, starting from a health problem and in relation to the environment have different degrees of functioning. In other words, disability is one of the possibilities of the human condition and not a characteristic of a few particular individuals recognizable, therefore, as a group”.[38] Each person with a disability is unique, differing from the others, and has special needs as well as special capabilities. This is also the position of the Italian Constitutional Court in decision n. 80 of 2010: “People with disabilities do not constitute a homogeneous group. […] For each of them, it is necessary to identify mechanisms for removing obstacles that take into account the specific type of impairment that a person is affected by in concrete terms”.
This diversity poses a challenge for lawmakers, who are requested to craft appropriate legal measures for people with disabilities and to accommodate the requirements of persons with disabilities. In fact, law typically provides rules for a specific category of people, applying regulations to distinct groups such as “disabled” or “severely disabled” individuals, in contrast to those considered “functional”. Yet, when we deal with people with disabilities there are no clear borders between different groups of people, and consequently rules are difficult to design and to apply.
Disability calls for a new approach to legislation. Flexibility is a crucial attribute of rules aimed at addressing disability issues effectively. This entails crafting regulations that are flexible enough to accommodate the unique circumstances of each individual case. Without such flexibility and adaptability regulation, instead of supporting social transformation, becomes a bureaucratic cage.
In recent legislation and case law of different jurisdictions a number of examples can be found in support of this legislative approach that gives room to individual and tailored answers in contrast with standard solutions. For example, in the case law of the European Court of Human Rights this approach is commonly referred to as “gradation of state measures for disabled people”. Take the case Alajos Kiss v. Hungary (2010),[39] where the ECtHR clearly affirmed that a State that takes away the right to vote of any person with disability under partial guardianship, irrespective of his or her actual faculties, is in violation of the European Convention of Human Rights. The applicant was a Hungarian national with a psychiatric condition, who was placed under partial guardianship. As a consequence, he had been omitted from the electoral register. The Court considered that treating persons with mental abilities as a single group was a questionable classification. And concluded that the European Court could “not accept an absolute bar on voting rights applied to any person under partial guardianship irrespective of his or her actual faculties”.[40]
This personal or case by case approach is necessary if we want to give value to all the residual capabilities of the person with disability. It requires to shift the focus from the weaknesses to the capabilities, the skills, the talents of the person with disability.
5 Conclusion: for a relational approach to disability
The previous overview on the law on disability shows that relations are relevant for an effective approach to disability. Current sociological research focuses on the contextual and relational dimension of the experience of disability: on the one hand, recent studies demonstrate that “we cannot fully understand disability without knowing about the context that is disabling” and consequently advocate the necessity to address the relational and structural context – starting from the family – in order to mitigate the disadvantage associated with disability and to support any special need connected with disability.[41] On the other hand, they draw attention to the fact that “disability not only impacts the lives of those who are directly affected, but it also has important spillover effects on family members”.[42] This is evident in children with disabilities, but also at any other stage of life, with a growing number of elderly individuals with disabilities.
To elaborate deeper in the relational dimension of disability, four different aspects can be unpacked.
Firstly, disability impacts not only the lives of the individuals but also those of the people surrounding them: parents, siblings, schoolmates, and fellow workers. That is why, for example, labor law provides special benefits for parents of children with disabilities and, in general, the law provides benefits for the caregivers of persons with disabilities. To this purpose it is worth mentioning the Coleman decision of the Court of Justice of the EU (2008),[43] where the Court applied the labor legislation concerning the rights of disabled people to the mother of a disabled child.
Secondly, in most cases, families are the main caregivers of persons with disabilities, even when public institutions provide the necessary medical and social services to support their social life. This is reflected, for example, in the pragmatic approach taken by the Italian Constitutional Court in decision n. 203 of 2013, concerning the benefit of paid leave from work accorded to the caregivers: “the governing principle is that care for the disabled person within the family is preferable […] and, more importantly, is most compliant with principles of constitutional law, irrespective of the age of the assisted person and whether or not he or she is a child”. After all, the roles of families “remain fundamental in the provision of care and assistance to the disabled”. For similar reasons, the same Court a few years later (decision n. 18 of 2020) extended the possibility of serving a sentence of detention at home rather than in jail for mothers of children with disabilities, regardless of the age of the child.
Thirdly, the aim of the most recent legislation – beginning with the UN Convention – is to advance toward the full and effective participation and inclusion of persons with disabilities in every aspect of social life, i.e. improving their relational life: from education and sports to employment and cultural activities. The quality of the relations that a person with disabilities is able to cultivate can make the difference, as the same person may have entirely different experiences in varying relational contexts. To put it bluntly: inclusion and participation is a matter of relations.
Fourthly, the cornerstone of disability legislation, as we have seen, is reasonable accommodation, which implies a relational approach, rather than a rules-based one. When the law requires the duty-bearer to provide a reasonable accommodation, it is not imposing a specific rule or solution: it rather calls for starting a dialogical process between the duty-bearer and the person with disabilities, a process that involves all interested parties, with the aim of finding a solution that is sustainable and acceptable to everyone. In many cases, a reasonable accommodation can be attained through a policy of support. All in all, reasonable accommodation is based on a duty of solidarity or on a shared responsibility of all social actors. Again, it is a matter of relations. It has a horizontal dimension as well as a vertical one. The genuine inclusion of persons with disabilities is the result of a collective effort. It is not merely a matter of welfare benefits delivered by states and other public institutions, but the result of a shared responsibility among all social and economic actors, including individuals and social groups, and companies. This common effort also includes the persons concerned, who should not be considered merely as recipients or beneficiaries of paternalistic measures but full protagonists of the decisions to be taken.
The experience of life of people with disabilities calls for a relational approach[44] in which, indeed, nothing should be done for them without them – as the UN Convention requires – while also avoiding the mistake of confusing dignity, autonomy and independence with solitude or abandonment.
“Relationships are central to people’s lives – to who we are, to the capacities we are able to develop, to what we value, what we suffer, and what we enjoy”: these are the opening words of the seminal and visionary book by Jennifer Nedelsky, Law’s Relations,[45] where she outlines a relational theory of self, autonomy and law, as the subtitle of the book explains. She advocates for a paradigm shift in the common understanding of social life and in the legal infrastructures, aiming to move “relationship from the periphery to the center of legal and political thought and practice”.[46]
Personal and institutional relations have been underestimated in the legal theory and practice on many respects.[47] Our legal culture would gain a lot from a reasoning that put relations at the center. Prioritizing relationships would be beneficial in many domains; yet, if there is an area where the focus on relations is urgent and imperative, this is the field of disability.
Here is a cultural challenge for the years to come.
The individualistic culture based on individual rights has made an invaluable contribution and is to be cherished for unveiling the humiliating effect of adopting a paternalistic attitude towards persons with disabilities, treating them as an object of pity or, at the very best, of care. The human dignity of every human being is to be firmly maintained at the center.
Yet, in some legal discourse, human dignity has been reduced to concepts such as independence, self-determination, freedom of choice. The condition of disability reveals that the two sets of concepts do not overlap.
Consider the growing number of cases decided by the ECtHR concerning persons with mental disabilities that committed suicide under custodial conditions. In these cases, the Court was asked to strike a balance between the respect of the autonomy of the patient, with the duty to protect the patient and the community.[48] This difficult balance between competing values is well represented in an important and recent case of the ECtHR, Fernandes de Oliveira v Portugal (2019).[49] In this case, the applicant complained under Article 2 of the Convention that her son had been able to commit suicide as a result of the negligence of the psychiatric hospital where he had been hospitalized on a voluntary basis. It particularly concerned the State’s obligations in terms of protecting the lives of people in psychiatric institutions. By a majority, the Grand Chamber found no violation of the State’s obligation to protect the life of the patient. The Court did not find the violation because, according to the judges, today’s paradigm in mental health care is to give persons with mental disabilities the greatest possible personal freedom in order to facilitate their re-integration into society. The Court considered that it is not only permissible but also desirable to grant hospitalised persons the maximum freedom of movement, in order to preserve as much as possible their dignity and their right to self-determination and individual autonomy. Yet, some of the judges expressed their (partial) dissent from the reasoning of the majority of the Court targeting the fact that emphasizing the liberty and autonomy of persons without addressing their extreme vulnerability may result in the person’s death and even in the reoccurrence of similar events.[50] In a similar precedent case, Hiller v. Austria case,[51] Judge Andras Sajo – one of the most respected voices of the liberal culture of individual rights – dissented and he clearly wrote, in his concurring opinion: “I beg to differ: precaution is not paternalism”.
There is a lesson to be learned from these tragic cases, and in general from the living experience of people with disabilities. The focus on the individual rights and the autonomy of people with disabilities should not come at the price of overlooking the concrete conditions of the person with disabilities. It is a matter of realism: living independently for people with disabilities cannot be interpreted as living on their own.[52] In reality, no one in contemporary society is completely independent: as a matter of fact, we all live in a state of mutual interdependence.[53]
A realistic and experiential understanding of the human condition – with or without disability – is effectively captured by the idea of inter-independence, rather than independence, recently elaborated by Chiara Giaccardi and Mauro Magatti,[54] whose thinking does not artificially separate the claim for autonomy and freedom from the craving for connections and relationships that are interwoven into the fabric of every human experience. This correction of some hyperbolic versions of the hyper-individualistic culture, based on an abstract claim of self-determination and free choice, is relevant not only for persons with disabilities, but for all. When Jennifer Nedelsky, along with many others,[55] elaborates a critique of the American liberal version of individual rights, she provides an invaluable contribution not only for a better legislation on disability, but more generally for a more comprehensive understanding of the Rights Talk – to recall the title of an evergreen book by Mary Ann Glendon.[56]
She moves from a double critique to both the liberal individualism and the communitarian thinking: “The problem with ‘self-determination’ (and many conceptions of autonomy that deny or ignore its relational nature) is that it presumes or implies that the nature of the ‘selves’ is entirely a matter of our choice. And, conversely, a common objection to ‘communitarian’ thought is that it overstates the constitutive nature of human embeddedness in community”.[57] In her understanding of the human experience “the capacity for autonomy can only develop and thrive when fostered by constructive relationships, such as those with partners, teachers, friends, and agents of the State”.[58]
This is a paradox of human experience: that autonomy requires good relations. Not only in the early stages of children’s development, but in all ages and conditions of life.[59]
A more comprehensive and realistic approach to human experience – one that combines the self with the we – can help craft more appropriate legal instruments capable of preserving and giving value to all the capabilities of the human person, without overlooking or downplaying their fragilities and vulnerabilities.
I believe there is a valuable lesson to be learned from people with disabilities: as paradoxical as it may sound, to achieve autonomy, we must rely on others.
Persons with disabilities open the eyes of our culture that has insisted too much on one side of the human experience focusing only on independence and autonomy: as a matter of fact, we are all dependent to a certain degree. We all want autonomy, but this is not in contrast with our dependency from others: “the alternative in the relationship between the self and society is not the dualistic dependency/independence […] Rather, human life is characterized by ‘inter-independence’ […]. In the framework of inter-independence – which is itself a paradoxical condition – being free does not mean having no ties. And freeing oneself does not mean dissolving the structural bond that ties us to what and who surrounds us: it means recognizing it and, if necessary, rearticulating it […] Freedom – as an essential expression of human life – exists only as an open relation”.[60]
[1] This paper was prepared for the Plenary Session of the Pontifical Academy of Social Sciences, held from 8 to 11 April 2024. I want to express my gratitude to Alessandro Baro and Ivan Bellomo for their professional support, including research on sources and the revision of the text. I extend heartfelt thanks to Nicoletta Balbo, for reading the text and challenging the theses presented here on the basis of her scholarship and personal experience. Needless to say, the discussions with all the participants in the Plenary Session were very enriching and prompted me to refine and better explain several central points of this paper.
[2] It has been argued, especially with reference to the direct EU accession to this Convention, that it represents one of the most visible examples of cooperation between states for human rights protection. See G. De Burca and C. Kilpatrick, Resisting External Accountability: The European Union and Human Rights, K.A. Armstrong, J. Scott and A. Thies (eds), EU External Relations and the Power of Law: Essays in Honour of Marise Cremona, Hart, Oxford, 2024, p. 9.
[3] E. Celik, Exploring the use of the concept human dignity in disability human rights law: from UNCRPD to ECtHR, The Age of Human Rights Journal (17) 2021, p. 28 ff.
[4] V. Della Fina, R. Cera and G. Palmisano, The United Nations Convention on the Rights of Persons with Disabilities, A Commentary, Springer International Publishing, Cham, 2017, p. 2: “The first phase, dating from 1945 to 1970, marks a time when disabled persons were invisible in United Nations policy. This changed in the second phase, from 1970 to 1980, when disabled persons became recognised as subjects of rehabilitation. The third phase comprised the two decades from 1980 to 2000, and during this time persons with disabilities became objects of human rights. Only in the new millennium, during the fourth phase, disabled persons became subjects of human rights”.
[5] T. Degener, M. Gómez-Carrillo De Castro, Disability Law and Human Rights, F. Felder, L. Davy, R. Kayess (eds.), Palgrave Studies in Disability and International Development, Palgrave Macmillan, Cham, 2022, p. 32.
[6] M. Leonardi, J.L. Ayuso-Mateos, J. Hollenweger, A. Pessina, J.E. Bickenbach, Multidisciplinary Research and Training Network on Health and Disability in Europe: The MURINET Project, American Journal of Physical Medicine & Rehabilitation 91(13) 2012, pp. S1-S4. In fact, the Convention has also changed the language, and the preferred expression is person with disabilities rather than disabled person.
[7] The comments on this new understanding of disability are uncountable. Out of many, see E. Colombetti, La dipendenza condivisa, MEDIC - Metodologia didattica e innovazione clinica, (21) 2013, p. 24, stressing that both the biophysical and the social conditions are to be considered in their reciprocal relations.
[8] The notion of disability has been enriched since the first decision of the CJEU, Grand Chamber, 11 July 2006, case C-13/05, Chacón Navas v. Eurest Colectividades SA. A broader approach to disability was taken by the Court of Justice of the EU, Second Chamber, decision 11 April 2013, Joined Cases C-335/11 and C-337/11 HK v. Danmark: “Following the ratification by the European Union of the United Nations Convention on the Rights of Persons with Disabilities […] the Court held that the concept of ‘disability’ must be understood as referring to a limitation which results in particular from long-term physical, mental or psychological impairments which in interaction with various barriers may hinder the full and effective participation of the person concerned in professional life on an equal basis with other workers. […] That concept of ‘disability’ must be understood as referring not only to the impossibility of exercising a professional activity, but also to a hindrance to the exercise of such an activity. Any other interpretation would be incompatible with the objective of that directive, which aims in particular to enable a person with a disability to have access to or participate in employment”. This definition has been followed by the Court of Justice ever since. See, for example, decision 4 July 2013, case C-312/11, European Commission v. Italian Republic; 22 May 2014, case C-356/12, Wolfgang Glatzel v. Freistaat Bayern; decision 1 December 2016, C-395/15, Mohamed Daouidi v. Bootes Plus SL and Others; 9 March 2017, case C-406/15, Petya Milkova v. Izpalnitelen direktor na Agentsiata za privatizatsia i sledprivatizatsionen control, among many others.
[9] CJEU, 18 March 2014, case C‑363/12, Z v. A Government department, The Board of management of a community school (Grand Chamber).
[10] CJEU, Case C‑354/13, Kaltoft V Municipality of Billund, Judgement of the Court (Grand Chamber), 16 December 2014. See CJEU, Case C-354/13, FOA v. Kommunernes Landsforening, 18 December 2014, in particular para. 53-64.
[11] Case C‑354/13, Kaltoft, cit., Opinion of the Advocate General, para. 59-60.
[12] R. Lines, J. Hannah, G. Girelli, ‘Treatment in Liberty’ Human Rights and Compulsory Detention for Drug Use, Human Rights Law Review, Vol. 22, Iss. 1, March 2022, p. 12. Particularly relevant are also the reflections presented by S. Flacks, Deviant Disabilities: The Exclusion of Drug and Alcohol Addiction from the Equality Act 2010, Social & Legal Studies, 21(3), 2012, pp. 395-412.
[13] Section 25 of Canadian Human Rights Act “disability means any previous or existing mental or physical disability and includes disfigurement and previous or existing dependence on alcohol or a drug”.
[14] Federal Court of Australia Case, Marsden v HREOC & Coffs Harbour & District Ex-Servicemen & Women’s Memorial Club Ltd, 2000, 1619.
[15] This topic is debated for example in S. Flacks, Deviant Disabilities: The Exclusion of Drug and Alcohol Addiction from the Equality Act 2010, cit., p. 399.
[16] See for example BCCA Case, Ontario (Human Rights Comm.) v. Vogue Shoes, 1991 CanLII 13168 (ON HRT), available at https://canlii.ca/t/gdb89, and BCCA Case Kemess Mines Ltd. v. International Union of Operating Engineers, Local 115, 2006, 58 (CanLII), available at https://canlii.ca/t/1mkk1
[17] SCC Case, British Columbia (Public Service Employee Relations Commission) v. BCGSEU, 1999 CanLII 652, [1999], 3 S.C.R. 3, available at https://canlii.ca/t/1fqk1
[18] SCC Case British Columbia (Superintendent of Motor Vehicles) v. British Columbia (Council of Human Rights), 1999 CanLII 646, [1999], 3 S.C.R. 868, available at https://canlii.ca/t/1fql1
[19] For a clear and comprehensive overview of the Canadian system see M. Lynk, Disability and Work: The Transformation of the Legal Status of Employees with Disabilities in Canada (December 2007). Available at SSRN: https://ssrn.com/abstract=1068403 or http://dx.doi.org/10.2139/ssrn.1068403
[20] ECtHR Case Cam v. Turkey, application no. 51500/08, 23 February 2016.
[21]The case-law of European court of human rights considers that the violation of the duty to accommodate amount to a discrimination on the grounds of disability. See for another example ECtHR Case Horovath and Kiss v. Hungary, application no. 11146/11, 29 January 2013.
[22] ECtHR Case of Grimailovs v. Latvia (Application no. 6087/03), 25 June 2013. Similar cases are the ECtHR Case Asalya v. Turkey (Application no. 43875/09), 15 April 2014; ECtHR Case Butrin v. Russia (Application no. 16179/14), 22 March 2016.
[23] With the growing number of cases brought in front of the European Court of Human Rights, claiming multiple violations of the European Convention, the question arises regarding the compatibility of the practice of sentencing people with physical or mental disability to imprisonment in jail. See for example ECtHR, First Section, Sy v. Italy (application 11791/20), 24 January 2022, finding a violation of art. 3 of the Convention (Prohibition of inhuman and degrading treatment) for the imprisonment in jail of a person with bipolar syndrome, without appropriate medical treatment.
[24] CJEU Case C-312/11, European Commission v. Italian Republic, 4 July 2013.
[25] ECtHR, Case Guberina v. Croatia (application 23682/13), 22 March 2016.
[26] R. Mason, J. Nicol, J. Walker, An Examination of the Duty to Accommodate in the Canadian Human Rights Context, Library of the Parliament, 2012-01-E, 1 December 2020, p. 3.
[27] Italian Civil Law provides for this purpose a useful distinction between obbligazioni di mezzo and obbligazioni di risultato.
[28] T. Greco, La legge della fiducia. Alle radici del diritto, Laterza, Roma, 2021.
[29] A. Arstein-Kerslake, Legal Capacity and Gender, Springer Switzerland AG, Cham, 2021, pp. 17-18.
[30] A. Gavosto, La scuola bloccata, Laterza, Roma, 2022, p. 9.
[31] This model is also consistent with the Art. 12 of the UNCRPD interpretation proposed by the UNCRPD Committee. Indeed, it has been observed by S.J. Hoffman, L. Sritharan and A. Tejpar, Is the UN Convention on the Rights of Persons with Disabilities Impacting Mental Health Laws and Policies in High-Income Countries? A Case Study of Implementation in Canada, BMC International Health and Human Rights, Nov 11;16(1):28, 2016, p. 8, that the CRPD Committee “takes the position that this Article on legal capacity allows only supported decision-making for persons with disabilities. The Committee explains that guardianship and all other substitute decision-making regimes are inconsistent with the CRPD’s goal of achieving autonomy and equality for persons with disabilities. Substitute decision-making, which is the prevalent regime worldwide, is a process by which a guardian or representative makes decisions for persons with disabilities deemed to lack capacity, often without a requirement to obtain their consent. In contrast, supported decision-making uses a persons’ network of ‘friends, family, or other allies’ to help the affected person make decisions by assuming capacity and assessing their communications. If this communication is inconclusive, the regime relies on the persons’ ‘previously expressed wishes, abiding values, and experience in similar situations’ to help make decisions”.
[32] This Italian and, generally, some European systems, have been endorsed by many international scholars such as M. Nussbaum and C. Faralli, On the New Frontiers of Justice. A Dialogue, Ratio Juris, Vol. 20, no. 2 June 2007, p. 159, who observed that “Europe, similarly, has made progress (…) and I argue that some of the European approaches to the crucial issue of legal guardianship are superior to U.S.A. approaches, because we need flexible and multi-valent types of guardianship, not an all-or-nothing declaration of competency or noncompetency”.
[33] On the rationale of the “amministratore di sostegno” see the Italian Constitutional Court, Judgement n. 114/2019, 7 March 2019, concerning the case of an elderly woman whose desire was to donate 10,000 euros to one of her children. The Civil Code prevented the incapacitated person from making donations. It was indeed an old rule on incapacity, with the ratio of protecting vulnerable persons against frauds. The Court decided that, with the help of this “amministratore di sostegno”, the elderly woman should be allowed to make the donation to her child, affirming that “by introducing the support administration, the legislature has endowed the legal system with a measure that can be shaped by the tutelary judge in relation to the personal status and life circumstances of each beneficiary and in view of the concrete and maximum development of his or her actual abilities. Thus, the legal system today shows greater sensitivity to the condition of persons with disabilities, is more attentive to their needs and at the same time more respectful of their autonomy and dignity than in the past, when the civil code limited itself to establishing a clear distinction between capable and incapacitated persons, linking rigid predetermined consequences to one or the other qualification. The new rules are fully in line with the most recent instruments developed in the European and international legal order: with the United Nations Convention on the Rights of Persons with Disabilities (…) and with the Charter of Rights of Persons with Disabilities, done in New York on 13 December 2006 (…), and with the Charter of Fundamental Rights of the European Union, proclaimed in Nice on 7 December 2000 and adapted in Strasbourg on 12 December 2007, Article 26 of which protects ‘the right of persons with disabilities to benefit from measures designed to ensure their independence, social and occupational integration and participation in the life of the community’” (para. 4 of the “considerato in diritto”).
[34] The scholarship on proportionality as the common currency in human rights litigation is very broad. One book though towers over many others: A. Barak, Proportionality: Constitutional Rights and their limitations, CUP, Cambridge, 2012.
[35] ECtHR, Case Arnar Helgi Lárusson v. Iceland, application n. 23077/19, 31 May 2022.
[36] M. Leonardi, J.L. Ayuso-Mateos, J. Hollenweger, A. Pessina, J.E. Bickenbach, Multidisciplinary Research and Training Network on Health and Disability in Europe: The MURINET Project, cit.
[37] See chapter written by Ana Marta González in this volume, p. 208
[38] E. Colombetti, La dipendenza condivisa, cit., pp. 25, 27.
[39] ECtHR, Case Alajos Kiss v. Hungary (application no. 38832/06), 20 May 2010. On this judgement see L. Peroni and A. Timmer, Vulnerable groups: The Promise of an Emerging Concept in European Human Rights Convention Law, International Journal of Constitutional Law, Vol. 11, Iss. 4 October 2013, pp. 1066-1067, who observed that the ECHR was taking “the first steps towards embracing a ‘social model’ of disability: this way of framing disability recognizes the built environment and society’s negative attitude towards people with impairment as the main factors disabling and excluding people. Contrary to the ‘medical model’ of disability, the hallmark of a social approach to disability emphasizes social prejudices and stereotypes, rather than individual impairments”. Similarly, in ECtHR, Fourth Section, Case Anatoly Marinov v. Bulgaria (application no. 26081/17), 15 February 2022, the European Court of Human Rights considered that the indiscriminate removal of voting rights without an individualized judicial evaluation, solely on the grounds of mental disability necessitating partial guardianship, could not be considered to be proportionate to the legitimate aim for restricting the right to vote.
[40] ECtHR, Case Alajos Kiss v. Hungary (application no. 38832/06), 20 May 2010, quoted, para. 42.
[41] M. Maroto and D. Pettinicchio, Relational Inequality and the Structure that Disadvantage, in The Oxford Handbook of the Sociology of Disability, R. Lewis Brown, M. Maroto and D. Pettinicchio (eds), OUP, Oxford, 2022, pp. 389-413.
[42] N. Balbo and D. Bolano, Child disability as a family issue: a study on mothers’ and fathers’ health in Italy, European Journal of Public Health, 2023, pp. 1-6.
[43] In this case, by way of example, examined by the Grand Chamber of the Court of Justice of the EU, it was clearly stated that “Where an employer treats an employee who is not himself disabled less favorably than another employee is, has been or would be treated in a comparable situation, and it is established that the less favorable treatment of that employee is based on the disability of his child, whose care is provided primarily by that employee, such treatment is contrary to the prohibition of direct discrimination laid down by Article 2(2)(a) [of the Council Directive 2000/78/]”. CJEU, Grand Chamber, Case C-303/06, S. Coleman v Attridge Law and Steve Law (Grand Chamber), 17 July 2008.
[44] P. Donati, in this volume, to be completed.
[45] J. Nedelsky, Law’s Relations: A relational theory of Self, Autonomy and Law, OUP, Oxford, 2012, p. 3.
[46] Ibidem. Nedelsky is not alone: her aspiration is also the aspiration of many critics of the American liberalism, of some of the feminist scholarship, and of the egalitarian liberals. She builds her powerful thinking on the work of Alasdair McIntyre, Feder Kittay, Martha Nussbaum and many others. Interestingly enough the relational dimension is also at the center of the most recent book by B. Ackerman, The Postmodern Predicament, Yale University Press, New Haven, 2024, where he considers the conflicts between sphere-mates as a part of the contemporary condition, that shapes our personal lives and also impacts on the political dimension.
[47] Also, in institutional design. On this point see A. Kavenagh, The Collaborative Constitution, Cambridge University Press, Cambridge, 2023.
[48] Some scholars have raised radical concerns about the culture of individual rights and some conditions of mental disability. See, among others, M.C. Freeman, K. Kolappa, J.M. De Almeida, A. Kleinman, N. Makhashvili, S. Phakathi, B. Saraceno, G. Thornicroft, Reversing hard won victories in the name of human rights: a critique of the General Comment on Article 12 of the UN Convention on the Rights of Persons with Disabilities, Lancet Psychiatry, 2015, p. 845 who affirmed that “A universal presumption of legal capacity and the primacy of supported decision-making therefore cannot be absolute and exceptions have to be considered. This must apply to both physical and mental health. In our view, excluding any exemption to the presumption of legal capacity due to mental impairment, and as a result not allowing a person with severe mental illness or other impairment to have their circumstance treated as exceptional, might in fact violate his or her rights, and in some circumstances could result in harm to self or to others”; S. Wildeman, Protecting Rights and Building Capacities: Challenges to Global Mental Health Policy in Light of the Convention on the Rights of Persons with Disabilities, J Law Med Ethics, 41:1, 2013, pp. 48-73.
[49] ECtHR, Case Fernandes de Oliveira v. Portugal (Application no. 78103/14), 31 January 2019.
[50] E. Celik, Exploring the use of the concept of human dignity in disability Human Rights law: from the CRPD to ECtHR, cit., p. 47.
[51] ECtHR, Case Hiller v. Austria (Application n. 1967/14), 22 November 2016.
[52] G. Palmisano, Comment to Article 19 [Living independently and Being Included in the Community], in V. Della Fina et al. (eds), The United Nations Convention of the Rights of Persons with Disabilities, cit. p. 359.
[53] M. Oliver, Disability and dependency: a creation of industrial societies, in: Barton L. (ed), Disability and dependency, Routledge, London, 2005, pp. 6-22.
[54] C. Giaccardi, M. Magatti, Supersocietà. Ha ancora senso scommettere sulla libertà?, Il Mulino, Bologna 2023, Iid., Generare libertà. Accrescere la vita senza distruggere il mondo, Il Mulino, Bologna 2024.
[55] One voice, out of many: M. Sandel, Liberalism and its critics, New York University Press, New York, 1984.
[56] M.A. Glendon, Rights Talk: The Impoverishment of Political Discourse, Free Press, New York, 1991. In a more recent work M.A. Glendon writes: “Despite our attachment to the ideal of the free, self-determining individual, we humans are dependent social beings. We still begin our lives in the longest period of dependency of any mammal. Almost all of us spend much of our lives either as dependents, or caring for dependents, or financially responsible for dependents. […] We should start from acceptance of this profound and unchangeable fact of life”. Ead., Discovering our dependence, First Things, 2004, available at the following link: https://www.firstthings.com/article/2004/10/discovering-our-dependence
[57] J. Nedelsky, Law’s Relations, cit., p. 167.
[58] Ibidem.
[59] Needless to say, Pope Francis, in his Message for the International Day of Persons with Disabilities of 2022, insists on this point: “How much would a better awareness of our need for one another help us to have less hostile relationships with those around us! And how much would the realization that entire peoples cannot save themselves prompt us to seek solutions to the senseless conflicts we are experiencing! (…) This magisterium of fragility is a charism by which you – dear sisters and brothers with disabilities – can enrich the Church. Your presence ‘may help transform the actual situations in which we live, making them more human and more welcoming. Without vulnerability, without limits, without obstacles to overcome, there would be no true humanity’”. Message of the Holy Father Francis for the International Day of Persons with Disabilities, 3 December 2022.
[60] C. Giaccardi, M. Magatti, Supersocietà. Ha ancora senso scommettere sulla libertà, cit., p.174.