From a blinding concept to empowering partnerships

What is a disability?

Speech to the Seminar on the UN Convention on the Rights of persons with sisabilities, Eligibility Criteria and the international Classification of Functioning, Disability and Health 

19th | 20th April 2010 

Ministero della Salute 

Lungo Tevere Ripa 1  -  ROME 

Definition of what?

This debate on definition of disability is “in the air” from a long time; the General Assembly of the United Nations proclaimed 1981 as the International Year of Disabled Persons whose theme was “Full participation and equality”, recognised disability “as a relationship between an individual and his or her environment”, and it appear a bit amazing that thirteen years after we still focus on that issue and that we did not find the way out. We know that disability is a moving concept influenced by the cultural approaches as many other factors, it was the subject of a strong and contradictory discussion the last day of the last conference that elaborates the CRPD and it is also a very actual debate in our NGO in the discussions we have for the revision of our Constitution.

I am not in favour of a definition of disability in the DPI constitution because DPI is not "Disability International", but "Disabled Peoples' International", because we are fighting against disablement causes and not against disability, and finally because the people who want and need a definition are not the disabled people themselves but those who are not. But there is two ways I encourage participants to explore and to practice: The first one cost nothing more than a daily vigilance on the words we use to describe the world and its residents; this is the semantic way and we are here to consolidate it. The second is participation, because we all have to learn how to live together, and because there is no better way to learn to live together than to make it together.

We know since the adoption of the CRPD in December 2006 that a disability is a "long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder (...) full and effective participation in society on an equal basis with others.", and now the issue is not to know "what is disability", but "what to evaluate?", “what to compensate?” “Witch practices to change and to adopt for the enjoyment of Human Rights by all?” With other words, as it is usual that a person is resumed to one of her/his negative characteristics ("A disabled"), the danger of an approach focused on the “dis” (ability, functioning …) is that the question "what is disability" conducts people and media to understand the answers to that question as a definition of the people living with an impairment, and the criteria of "what is disability" has the risk to became criteria to define "who is a disabled person".”

All people have the same rights, whatever their present or absent abilities, and if the first objective was to create the conditions of a possible life for those who need, the actual one is now to build a world where theses people can enjoy their life as everybody. Now the CRPD is written and adopted, the issue is to identify the supports that a person needs to enjoy his/her Human Rights, and to evaluate his needed supports it is necessary to measure the personal and social consequences of an impairment or a disease in his living context, but not only that; An evaluation of potentials and capabilities is also needed. There are people who are discriminated because they are who they are, with unusual characteristics, and people who need supports to assume their basic needs (Move, eat, wash, communicate ...) and to express their capabilities and talents.

The semantic is a tool that can help us to be more aware of this tendency which constrain us, people with disabilities, to be protected, taken in charge and maintained in separates worlds, like the Chinese village where dwarfs are living together and make shows for tourists (1), or the village in Morocco where any family can let one of its member with a disability with a little amount of money to pay for his or her food. In so-called “developed countries” this places are named with kind words and sometimes located in lovely places, but they fulfil the same objective: Keep people with disabilities away from our eyes and our consciousness.

This universal unconscious feeling of rejection influences the words we use with the same objective; build “special places” for “special people”, people who are different and to whom we don’t want to be assimilate.  After 30 years of using the common words from “disabled” to “disabled people” and now “people with disabilities”, the crucial decision I took for my personal practices was to look at people and how they can contribute; and I understood rapidly that all of us can enrich the world … whatever our abilities. I understood also that in many situations if not all it is not only the person I face who has disabilities, but also me when I am unable to understand her.

The fact is that words are not adapted and are expressing the problematic relationship that Human beings have with their peers who live with an impairment, a disease … and in general people who live with characteristics that remain the fundamental fear of being castrated. As its relatives in other languages, the world disability was introduced to describe a reality that is each day more and more different, because what was not possible yesterday becomes today

Everyone has to understand that, if he doesn’t pay attention, the words he or she use to describe the situation of the people who are stigmatized by the traces of a castration (I.e. Any lose of a part of the body or of the mind), can became the bricks of a wall built by the repressed emotions. It is an innate tendency felt by all and that comes from the life instinct, and to learn how to refrain takes a long time.

The semantic gymnastic we all need to do can be initiated by new rules, saying for example that the objective is not to identify the causes of disability, but the barriers that prevent expression of capabilities and talents. To make Human Rights accessible to all and to empower the community the objective is not to make people similar but to empower each and encourage all to contribute to the fantastic collective adventure of life. By facilitating the contribution of people who learned how to live with less or different abilities, the community don’t only help us but also empower itself. There are not people who help others, but only people who support each together, no able and disabled people, abilities and disabilities, but only people with different abilities.

In that way, it is not an evaluation or a definition of what doesn’t exist which has to be done, but the evaluation and the definition and the measure of what is: abilities.

Jean- Luc Simon

Chairperson of Disabled People’s International- Europe

We, persons with disabilities, call on the Singapore government and president to halt the imminent execution of Nagaenthran a/l K Dharmalingam, a person with intellectual and psychosocial disabilities.
In this statement, we would like to inform the public and the state about points that we understand may not be so well-known, but that are essential to ensuring the rights and dignity of persons with disabilities to life and access to justice. We will address:
Who is a person with a disability? Why there have been specific calls to stop imposing the death penalty on persons with intellectual and/or psychosocial disabilities Barriers to due process and fair trial guarantees, and the need for procedural accommodations for persons with disabilities Real access to justice for persons with disabilities The need to recognise what persons with disabilities are saying about what we need, and to give us an accessible timeline to do so

For too long, the needs of persons with disabilities have been decided on by nondisabled people who do not pay attention to what we are actually saying. We are told that we are too complicated to understand. We have been fit into boxes and given black and white labels that nondisabled people find easier to comprehend. Then, we are told that we do or do not require certain supports because we do or do not fit certain diagnostic labels, and that certain treatment is or is not appropriate for us based on someone else’s perspective. This is not how our lives work.
Nor can a society say that it is inclusive if the support we ask for is considered goodwill and not something that is our right so that we will have equity in participation in all aspects of life, including in having a fair trial.

Who is a person with a disability?
The United Nations Convention on the Rights with Persons with Disabilities (CRPD), which Singapore is a State Party to, takes an interactions-based, rather than individual and medical, approach to disability. It says:
“[D]isability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”i
This means that Nagaenthran’s exact medical diagnosis is not the issue. What matters is that barriers were put in his way. The criminal legal system is hard to navigate on its own, and even the court experts could not deny that Nagaenthran has significant differences in communication and thinking.
We know that Nagaenthran has difficulties with attention, verbal fluency, set-shifting, abstract reasoning, strategy formation and problem solving, and may have had difficulties in knowing who to trust. This is something that many of us who are persons with intellectual disabilities, persons with psychosocial disabilities, and/or Autistic people have experienced.
We consider Nagaenthran to be one of us persons with intellectual and/or psychosocial disabilities. We fully believe that he had a right to the full range of procedural accommodations, including a justice facilitator whose job it is to advocate for procedural accommodations in how police interviews and court proceedings are carried out, to dispel prejudice, and to provide emotional support and communication facilitation. This should have been provided throughout his interactions with the criminal legal system, beginning from the time of his arrest.

Why there have been specific calls to stop imposing the death penalty on persons with intellectual and/or psychosocial disabilities

Singapore has signed and ratified the Convention on the Rights of Persons with Disabilities. A ratification is a promise that a state makes, where it agrees to be legally bound to, in Singapore’s case, align its laws with a convention. Nevertheless, it must also immediately stop any violations like executions from happening to persons with disabilities — and it has the ability to do so through presidential clemency or an immediate moratorium with subsequent changes to the laws.
Executing Nagaenthran would, without doubt, violate Singapore’s obligations under the CRPD. In particular, it would violate Article 10 on right to life, Article 13 on access to justice, and Article 15 on freedom from torture or cruel, inhuman or degrading treatment or punishment, amongst others.
The CRPD Committee has made calls in multiple Concluding Observations to abolish the death penalty, especially for people with intellectual and/or psychosocial disabilities, and has called on states to suspend all current death sentences and halt the execution of persons with intellectual or psychosocial disabilities.ii
Further, in its Concluding Observation to Iran, the CRPD Committee expressed concern that “persons with disabilities, particularly persons with psychosocial and/or intellectual disabilities may be at risk of facing a greater risk of death penalty due to lack of procedural accommodations, in criminal proceedings.”iii

Disproportionate barriers to due process and fair trial guarantees, and the need for procedural accommodations
The Committee on the Rights of Persons with Disabilities has expressed:
“The CRPD Committee is of the opinion that the duty to refrain from imposing the death penalty on persons with intellectual or psychosocial disability is grounded on the disproportionate and discriminatory denial of fair trial guarantees and procedural accommodations to them …”iv
Singapore itself has acknowledge the importance of procedural accommodations. But Singapore’s version of justice facilitators, the Appropriate Adult Schemev, did not exist in 2009, when Nagaenthran was interrogated by the police. The Straits Times reported in 2015 about the importance of the Appropriate Adult Scheme, where a volunteer with the scheme was quoted as saying that the programme is important because persons whom the scheme seeks to support “can easily agree to accusations” because they are “fearful of police or other authority figures”.vi This casts doubt as to whether it is fair or even just reasonable to take Nagaenthran’s confessions during his initial police investigation as his most authoritative statement.
Additionally, in response to the court’s criticism that Nagaenthran had given inconsistent statements to mental health professionals, we would like to affirm as fellow persons with disabilities that medical and mental health professionals can absolutely also be figures of authority. Many of us have experienced medical trauma, or have had bad, even dehumanising, experiences with doctors. Even in non-criminal cases, we may not feel safe around doctors, and may say different things to different professionals depending on how safe we feel around them. Inconsistencies in what we say often comes from a place of fear.

What Singapore has said about access to justice for persons with disabilities
In its reply to the CRPD Committee in April this year, Singapore stated that, with emphases added:
“There are procedural accommodations that facilitate effective access to justice for persons with disabilities at all stagesthroughout of legal proceedings. The Police are trained to identify suspects and witnesses with mental disabilities and to take steps to reduce the trauma experienced by them investigations.”vii
Nagaenthran was not accorded these procedural accommodations in his interaction with the police, his trial or his appeals over the course of 10 years. While he had legal counsel, the courts do not implement the procedural accommodations required by the International Principles and Guidelines on Access to Persons with Disabilities, which was jointly released by the CRPD Committee.viii

Real access to justice for persons with disabilities
Real understandings of what access to justice means for persons with disabilities is something that has gained greater prominence only recently, and this was accomplished through the advocacy and central participation of persons with disabilities ourselves. The International Principles and Guidelines on Access to Justice for Persons with Disabilitiesix, issued by the United Nations, was released only last year, in August 2020, after Nagaenthran’s court of appeal case and his failed application for presidential clemency in 2019.
After centuries of discrimination, it is of utmost urgency that states adopt and implement access to justice for us as it will make a significant difference. For instance, because of the state-of-the-art advocacy and training by the Mexican NGO Documenta, and since the introduction of justice facilitators in the Mexico City justice system, there have been cases where judges have ruled that criminal proceedings cannot be initiated against an accused person with a disability because procedural accommodations had not been provided from the time of arrest.

Nothing about us without us
We would like to note how little time there is for us after the announcement of this execution to do advocacy, especially since it concerns us, persons with intellectual and/or psychosocial disabilities. For some of us, it takes much longer for us to read the information or express out our thoughts on this issue. Some of us require easy read versions to access information about what is happening to one of us.
For some of us, it may not be possible to do all this by November 10, and Nagaenthran might have been executed before we can respond. Many of us have hated ourselves for not meeting normative standards of how quickly things should be done, and some of us will blame ourselves for Nagaenthran’s death too. This is yet another reason why irreversible penalties like the death penalty should not be imposed on persons with disabilities.

After a discriminatory society and an inaccessible criminal legal system, a cruel, irreversible punishment
For Nagaenthran, there was a lack and even total absence of procedural accommodation accorded to him from the start, both when interrogated by the police and in the courtroom. This means that he was denied true due process based on current best practices about access to justice for persons with disabilities, and even by Singapore’s own current standards.
Ascertaining whether access to justice has been equally fulfilled for persons with disabilities always involves an element of added subjectivity and therefore added arbitrariness. A sentence with the finality of the death penalty should not apply when such a disproportionate degree of arbitrariness exists.x
People like Nagaenthran, people like us, face discrimination in our daily lives. We face discrimination in employment, find it harder to find acceptance, and are more likely to experience or be threatened with violence, abuse and exploitation. Many of us are driven to death by suicide by these messages and by an inaccessible society that tells us that our lives are less worth living. We ask you: In this context, what message would the execution of Nagaenthran tell us about us our worth as persons with disabilities?
Nagaenthran is a person who has been disabled by society and by the courts, and now, after navigating a world and court system that was inaccessible to him, he faces the death penalty, the ultimate rejection of his humanity.
We submit that the central issue is not whether Nagaenthran met certain tests to quality for ‘abnormality of mind’ that would excuse him from mental responsibility for his actions and therefore the death penalty, but with what the state did or did not provide. In this case, the state did not provide.
We emphasise the need for the Singapore criminal legal system to study the latest standards and emerging best practices about justice, and access to justice, for persons with disabilities.
We call for an immediate moratorium on the death penalty for persons with disabilities in line with the Convention on the Rights of Persons with Disabilities and the International Principles and Guidelines on Access to Justice for Persons with Disabilities.
We urge the Singapore government and the Singapore president to halt the execution of a/l K Dharmalingam.

Disabled People’s Organisations We Who Witness (Singapore) Autistic Women and Nonbinary Network (USA) Center for the Human Rights of Users and Survivors of Psychiatry Entropía Social, A.C. (Mexico) SinColectivo (Mexico) Sociedad y Discapacidad (Peru)

Individual Signatories Emmy Charissa (Singapore) Timothy Ng (Singapore) Mari Yamamoto, Board Member, World Network of Users and Survivors of Psychiatry (Japan) Cora Segal, MA Candidate in Gender & Women’s Studies (USA)

Signatures in Support
Organisations Working on Access to Justice for Persons with Disabilities Documenta (Mexico)

For more information: International Principles and Guidelines on Access to Justice for Persons with Disabilities

“Nothing About Us Without Us” i The CPRD Committee reiterated this in its Concluding Observations to Guatelama in where it stated: “The Committee is concerned that the State party has not established a procedure for certifying degree of disability and that assessments are made on the basis of a medical and charity-based approach”, and “The Committee recommends that the State party define the criteria for assessing the degree of a person’s disability in accordance with the human rights principles enshrined in the Convention and establish appropriate regulation in its legislation and policies.” (CRPD/C/GTM/CO/1). ii CRPD/C/IRN/CO/1, CRPD/C/KWT/CO/1, CRPD/C/SAU/CO/1, CRPD/C/GTM/CO/1. iii CRPD/C/IRN/CO/1. ivCommittee on the Rights of Persons with Disabilities, “Comments on the Draft General Comment No. 36 of the Human Rights Committee on Article 6 of the International Covenant on Civil and Political Rights,” October 6, 2017. v We would like to register our disagreement with the term “Appropriate Adult”, which reinforces patronising stereotypes that people with disabilities forever remain children. vi Amir Hussain, “New Scheme to Help Persons with Developmental Disabilities During Police Investigations,” Straits Times (Singapore), Mar. 31, 2015, vii “Replies of Singapore to the list of issues in relation to its initial report”, September 29, 2020 (distributed April 29, 2021). viii The International Principles and Guidelines was jointly released by the United Nations Special Rapporteur on the rights of persons with disabilities, the Committee on the Rights of Persons with Disabilities, and the United Nation’s Special Envoy Special Envoy of the Secretary-General on Disability and Accessibility. ix "UN experts launch ground-breaking guidance on access to justice for people with disabilities", Office for the High Commissioner of Human Rights (Geneva), Aug. 28, 2020, xThe CRPD Committee has also noted the heighted arbitrary nature of the death penalty for persons with disabilities. In its Concluding Observations to Iran in 2017, it said: “The Committee recommends that the State party take measures to replace death penalty as form of punishment and ensure that persons with disabilities are not subject to arbitrary deprivation of life.” (CRPD/C/IRN/CO/1.)