Throughout history, disabled people have had to live their lives largely ‘out of sight and out of mind’. It wasn’t until the worldwide revulsion at the unimaginable atrocities committed in World War II brought the concept of ‘human rights’ when the United Nations issued The Universal Declaration of Human Rights. This declaration was to inspire various downtrodden minority groups in different countries to lobby for full recognition of their intrinsic humanity and for full recognition of their human and civil rights.
Most notably among these groups was the Civil Rights Movement in the 1950-60s. Besides struggling to achieve equal rights for African-Americans in the United States, the movement was to inspire many similar examples of political activism. By the 1960-70s, disabled people in developed countries soon began to identify with the struggles of African-Americans. They too felt that they were treated as second-class citizens in their own country and they too were condemned to a life of confinement due to the social barriers that prevented them from ever achieving equal opportunities and an acceptable quality of life.
The outcome of these early attempts at understanding the nature of disablement was a recognition of the fact that it is negative attitudes and socially created barriers which are the major causes of oppression and not the individual’s biological impairment. In simple terms, this realisation was called: the social model of disability.
In the 1990s, the social model then went on to become the foundation upon which many countries, including Malta (in 2000), outlawed discrimination on the basis of disability by enacting anti-discrimination legislation that safeguarded disabled people’s rights. While welcoming the introduction of national, anti-discrimination legislation and recognising that the human rights declaration also applied to them, disabled people still felt that a more direct and robust legal instrument was necessary to safeguard their human rights. To this end, in 2006, the United Nations enacted the United Nations Convention on the Rights of Persons with Disabilities and an optional protocol.
Over the last 25 years, we have seen an increasing and most welcome activism from disabled people themselves
The convention and its optional protocol came into effect in Malta a year ago today, following its ratification by Malta in October 2012. It represents a paradigm shift in how governments need to think, plan and legislate.
What the convention says is nothing new. To begin with, it does not give disabled people new rights, rather it asserts what measures need to be taken for disabled people to be able to enjoy the same human rights and fundamental freedoms as non-disabled people and on equal basis with them.
Furthermore, it simply enshrines what disabled people have been lobbying for decades, as we have seen above.
Another important principle enshrined in the convention rises from the rallying call of the disabled people’s movement of Nothing About Us Without Us. In fact, the struggle of the disabled people’s movement has not only been about equal rights in different aspects of life: education, employment, community inclusion, relationships and so on. It has also been about the right of disabled people to represent their own interests and to be provided with the support to do so if this is necessary.
Disabled persons’ lives are characterized by control by other, very often non-disabled, people: family members, health professionals, professionals, consultants and others working in the disability sector, legislators, decision-makers and service providers. So many that it is easy for disabled people’s voices to be drowned out of the discourse on disability issues, as very often they are.
The convention acknowledges this and places a great deal of importance on the direct participation of disabled people and their representative organisations in both the implementation and the monitoring of the convention. Representative organisations are those run and controlled by disabled people themselves and which include self-advocacy groups run and controlled by people with intellectual disability with the support of non-disabled and non-voting advisers.
In fact, the United Nations has also taken on board the distinction made by the disabled people’s movement between disabled people’s organisations, also known as DPOs, and other disability NGOs that are run and controlled by family members or other people working in the disability sector. The contribution by the latter is, of course, very much valued but the distinction helps to give primacy to disabled people’s direct voice.
The successful implementation of the convention, therefore, is dependent on the participation of disabled persons in the decision-making process at government level.
To ensure a clear demarcation of responsibilities, article 33 of the convention identifies the need for countries to set up (a) a government focal point and (b) an independent mechanism.
According to the convention, member states should “designate one or more focal points within government for matters relating to the implementation of the present convention and shall give due consideration to the establishment or designation of a coordination mechanism within government to facilitate related action in different sectors and at different levels”.
On the other hand, the independent mechanism’s role is “to protect, promote and monitor” that implementation. In this regard, it is the National Commission Person with Disability that has been entrusted with the role of independent mechanism.
As an autonomous entity, with a legal identity that empowers it to monitor the Equal Opportunities Act and investigate and take action on allegations of discrimination on the grounds of disability, the commission is ideally suited to fulfill that role. It follows then that its autonomy and independence and its separation from the political aspects of the implementation of the convention are crucial to the continued protection of Maltese disabled people’s human and civil rights.
Disabled people, DPOs and other NGOs too have a role to play in the implementation of the convention. After all, it is up to us disabled people to ensure that the aims of the convention are translated into effective action that truly caters for both our needs and our aspirations. Over the past decades, we have enjoyed significant improvements in our quality of life and in the safeguarding of our rights. The convention provides guidelines for ensuring that the work done to build on what has already been achieved ensures the strengthening of our rights and our voices.
Ultimately, however, the responsibility of the implementation of the convention rests with the Government. The requirements of this convention can be achieved progressively through policies and measures that are informed by its principles. What is important is that decisions taken are in line with the spirit and the letter of the convention and its various articles.
To take just one example, article 19 speaks about living independently and being included in the community. In order to be in line with the convention, developments in this area will need to provide community-based supported accommodation, which allows disabled people the ability to exercise the right to choose where they live, with whom and with what living arrangements. This entails a range of different services that suit different disabled people’s wishes and support needs.
The disability sector in Malta has come a long way over the last 50 years. It hasn’t done so by chance but through the active involvement and participation of many people and organisations.
Over the last 25 years, we have seen an increasing and most welcome activism from disabled people themselves. I remain convinced that all of us – disabled or not – can and should contribute in our different but complementary ways to the implementation of the convention.
A concerted national effort is the only way that we can truly establish a more just and inclusive society, a society where, together with other citizens, we disabled people can enjoy full participation, equal rights and equal opportunities on our own terms.
Joe Camilleri is president of the National Commission Persons with Disability.