10 years on from the CRPD: raising voices to raise awareness

Guest blog by Victoria Lee, Programme Manager within the Human Rights and Disability Unit of the UN Office of the High Commissioner for Human Rights

Disclaimer: The following blog is written in a personal capacity. The opinions expressed in this article are the author’s own and do not reflect the view of the OHCHR.

Today we celebrate the 10th anniversary of the UN Convention on the Rights of Persons with Disabilities. This landmark human rights instrument calls for the transformation of society in order to ensure the inclusion of persons with disabilities and their participation on an equal basis with others in all aspects of life. Awareness- raising, access to information and freedom of expression play key roles in this transformative process to remove barriers, particularly those created by stereotypes and negative attitudes embedded obstinately within our cultures and communities.

Ten years ago today, the UN General Assembly adopted the Convention on the Rights of Persons with Disabilities (CRPD).

Since that moment, much has been said and written about the strides made by the Convention. Its drafting involved an unprecedented level of participation by civil society, including persons with disabilities who were also represented as never before within government delegations during the Convention’s negotiations. It is also one of the most swiftly ratified UN human rights instruments (following the Convention on the Rights of the Child (CRC)). With the most recent ratification by the Democratic People’s Republic of Korea, the Convention counts 172 States Parties (including the European Union, for which it is the first time that it is a party to a human rights instrument).

Thanks to the contribution of persons with disabilities and their representative organisations, the Convention’s text embodies a veritable paradigm shift from the medical or charity approach concerning disability, which focuses on the impairment and individual as object of treatment or charity, to a human rights based approach which recognises the individual as subject of their own rights. It places at its centre the lived experiences of persons with disabilities, including children with disabilities, and their direct participation as the driving force of the development of laws, policies and decision-making concerning them, putting into practice the movement’s slogan, “Nothing about us, without us”.

The text’s innovations abound.

For the first time, it is affirmed that persons with disabilities enjoy and exercise human rights on an equal basis with others with provisions setting out the concrete articulation of how those classic human rights apply or translate when it comes to persons with disabilities- be it with respect to exercising legal capacity through supported decision-making, the right to inclusive education, or the right to live independently and be included in the community, among others.  For instance, while the latter does not feature in any previous UN human rights treaty, it cannot be denied that living independently and being included in the community is an inherent right belonging to all human beings. However, given the widespread and enduring practices resulting in the segregation and isolation of persons with disabilities, the explicit translation of living in the community as a human right was necessary to be expressly formulated with respect to persons with disabilities.

Also for the first time, a human rights treaty includes stand-alone provisions to accelerate and create the enabling environment necessary for the enjoyment and exercise of those substantive rights; accessibility (to overcome and eliminate all kinds of barriers within society), data collection (for informed and effective policy formulation), international cooperation (for the sharing of resources and capacity toward implementation), national implementation and monitoring (for strengthened national level follow up and implementation) and awareness-raising (to proliferate knowledge, understanding and capacity across all sectors of society and governance on the rights of persons with disabilities).

Awareness-raising, information and education play an essential role in eliciting the transformation in society which the Convention pursues. These enabling measures are pivotal to realising rights because they recognise that practical implementation is not solely about the adoption of a legal or policy framework, and that steps need to be taken to dismantle the entrenched attitudes, cultures and environments which infuse the value systems of our societies and cultures, including within each of ourselves, which continue to obstruct the inclusion and participation of persons with disabilities on an equal basis with others.  This is particularly significant when it comes to breaking the perpetuation of negative stereotypes and images of any specific group, and persons with disabilities especially, who have, since time immemorial, been viewed as: in need of charity, burdensome to families and society as a whole, and generally incapable of learning, working and leading lives of value and quality equal to others.

Rights violations and harmful practices are directly linked to the propagation of such views.  Practices of infanticide, abandonment, forced sterilisation, forced abortion, forced contraception and other forms of intervention concerning children and adults with disabilities, in particular the control exercised over the bodies of women and girls with disabilities, are still contemporary issues across the world. They remain socially accepted and commonly endorsed by law and policy in many countries, ten years after the adoption of the Convention.

There is still much work to be done on this front to bring information, tear down misconceptions and stereotypes and ensure persons with disabilities the right to express their views as a means to combat the discriminatory practices resulting in their continued marginalisation.

A case in point is the recent decision of France’s highest administrative jurisdiction and the views it reflects about persons with Down’s Syndrome and their place in society.

On 10 November 2016, the Conseil d’Etat rejected a petition by seven young persons with Down’s Syndrome and two associations concerning a decision by France’s audiovisual regulatory authority (Conseil supérieur de l’audiovisuel (CSA)), whose effect was to suspend a television spot being passed on the occasion of 2014’s World Down Syndrome Day (21 March). The television spot, entitled “Dear Future Mom”, included messages from young persons with Down’s Syndrome from around Europe, including France, to a question posed by a woman about what kind of life her future child with Down’s Syndrome would have. The responses highlighted the different activities possible, from working, traveling, learning to write, going to school, etc “como todos” (like everyone).

On 25 June 2014, the CSA issued a decision that, upon receiving complaints following its airing, it considered that the TV spot did not fulfil the criteria for transmission, and that its message could not be considered to be of general interest: “as it addresses itself to a future mother, its purpose may appear ambiguous and not elicit a… consensual reception.”  The CSA requested the channels to be attentive to transmitting messages “susceptible to lead to controversy”, and subsequently added that the spot’s message was “susceptible to trouble the conscience of women who, in full respect of the law, had made different personal life choices.”

This case can be read in several lights.

The approach taken by the CSA and the Conseil d’Etat centre on the concern that the TV spot portrays a pro-life position and thus infers a judgment upon women who have chosen to terminate their pregnancies upon detection of Down’s Syndrome.  While the TV spot itself does not expressly refer to abortion at any point, the preoccupation with this matter is exhibited in the CSA’s decision which explicitly identifies one of the supporting organisations of the spot, Foundation Jérôme-Lejeune, as a “foundation whose purpose is to advocate against abortion”.

Regardless of whether the background of the Foundation should have a bearing on the message being transmitted, it cannot be refuted that this consideration by the authorities responds to the ever prevailing view in society that having a child with Down’s Syndrome is undesirable. In fact, it has been documented that there is an overwhelming majority of terminations of pregnancy where Down’s Syndrome is detected in developed countries.  Yet the level of public debate and exchange on this issue is kept to a minimum.  The discussions which do ensue have proven to be highly contentious, at all levels – from global to local – given the propensities of an array of actors with an array of interests, to reduce the issue into one of pro-life versus pro-choice.

There is a palpable need for more evidence-based information, awareness-raising, and the sharing of views of all those who are impacted as the issues run deeper than the classic dichotomy of the abortion debate.  It cannot be assumed that women’s rights advocates and disability rights advocates are, by principle, in opposition: positions do intersect and align, notably in support of informed choice. The potential and space is rich for mutual support and reinforcement toward the ultimate goal of achieving equality and inclusion, and exercising greater freedoms, including with respect to sexual and reproductive rights, by combating the harmful stereotypes which lead to exclusion and rights restrictions – be they stereotypes based on gender, disability, or other, including their myriad intersections.

The central issue at hand in this case relates to the exercise of freedom of expression and access to information. On the one hand, young persons with Down’s Syndrome and their families have the right to express their views and share their perspectives on how they live and perceive their lives, and on the other hand, for the general public, including future mothers, to receive information in this regard, based on lived experience, as called for by the Convention in Articles 4(3) and 21. On the face of it, the Conseil d’Etat restricted the expression of a message made on behalf of tens of thousands of persons with Down’s Syndrome and their families on the basis that the matter cannot be considered to be of “general interest”, and is “susceptible to trouble” an undefined and unknown number of women “who made different life choices”.  The questions need to be raised (and may well be posed by the European Court of Human Rights): does this interference with the freedom of expression and access to information constitute a legitimate aim which is necessary in a democratic society, i.e. responding to a pressing social need?  If so, what does that reveal about our society?  And how does that attune with the well-established jurisprudence that:

Freedom of expression… is applicable not only to “information” or “ideas” that are favourably received or regarded as inoffensive or as a matter of indifference, but also to those that offend, shock or disturb the State or any sector of the population. Such are the demands of that pluralism, tolerance and broadmindedness without which there is no “democratic society”. (Handyside v UK, application no 5493/72, 1976, para 49)

Not least, this case also exposes a gap in awareness-raising. Raising awareness to ensure that the public is privy to another image of persons with disabilities – as active members of our families and communities. The power of awareness-raising is inestimable to address the root causes leading to those discriminatory attitudes and practices. Throughout the past five years, the Committee on the Rights of Persons with Disabilities, the monitoring body of the Convention, has articulated that awareness-raising obliges the State, among others, to:

  • Eliminate negative stereotypes and discriminatory attitudes of persons with disabilities, including those led by private initiatives, by carrying out mass media education campaigns for the general public and at the family level, in order to promote the positive image of persons with disabilities and their contributions to society;
  • Conduct awareness-raising, education and training to promote the rights and dignity of persons with disabilities aimed at public officials at all levels, including the judiciary, police, health professionals, teachers, social workers, members of Parliament, the media and the general public; and
  • Ensure the participation of persons with disabilities and their representative organisations in the design of campaigns and training programmes.

The TV spot appears to fulfil these elements and offers an uncommon example of persons with Down’s Syndrome visible in the public space, and portrayed in a manner which respects their dignity and rights and fosters their inclusion and participation. The images and messaging depart drastically from that habitually seen in media in which persons with disabilities are depicted as passive victims in need of charity and benevolence. It is indeed confronting to appreciate that ten years on after the adoption of the CRPD, the campaigns which are more widely accepted by society continue to be those which are stories of disempowerment and tragedy, while the rare positive images finding their way to the public space may be considered “susceptible to lead to controversy”.  Much work thus remains to bring these widely held views up to speed with the principles and rights enshrined in the Convention.

In this respect, the Committee has explicitly called for combating negative images of persons with disabilities in the context of public and private campaigns, such as telethons, as incompatible with and harmful for their enjoyment and exercise of rights. It has accordingly affirmed that “far from promoting rights and empowering persons with disabilities, these campaigns perpetuate and reproduce stigma and, thus hinder the possibility of constructing a culture in which persons with disabilities are recognized as part of human diversity and society.” (CRPD/C/PER/CO/1, para 18)

The Convention’s transformative vision is just this: we are called to celebrate difference and embrace diversity as part and parcel of humanity. Our communities are enriched by the diversity of their members, be they people with Down’s Syndrome, people with other kinds of impairments, women, children and adolescents, older people, indigenous people, LGBTI people, people from different countries and regions, and those at the intersections of those identities. Ten years on, we cannot be complacent and must continue to advocate for this transformation through speaking out and enabling others to speak out, listening, sharing and exchanging information and experiences, and learning and living together.