Who leads on disability rights?

It is not very long ago that people with disabilities were treated in an often callous and inhumane manner in Ireland and across the world. Often, we look at the past through the lens of ‘presentism’ where we judge the actions of the past through our current values, systems, resources and knowledge.

It is easy to condemn and criticise those that have gone before us without really being able to put ourselves in the context of the times we thumb our noses at. Often, it is very unfair and easy to do because the past rarely fights back. At the same time, change comes passing slow, and social and cultural change can be held back by inertia, and it is not easy to cleave from how things have ‘always been done’.

Much of the changes in attitudes, systems, laws and practices are only changed by the drive and activism of people who go against the grain and are willing to put themselves out there, often to be criticised, mocked and reviled. On disability rights, it has been people with disabilities in Ireland who have been at the forefront of bringing about changes in how disability is perceived and how it is actioned in society – not just in Ireland, but globally also.

There has been a lot of progress and there is much to be done. The Joint Oireachtas Committee on Disability Matters spent two years listening to people with disabilities in the preparation of its critical report launched in January of this year: Towards harmonisation of national legislation with the United Nations Convention on the Rights of Persons with Disabilities. The report was like a school report to be signed off at the bottom: must do better, can do better.

Agency

December 3 is International Day of Persons with Disabilities and the theme this year is ‘Amplifying the leadership of persons with disabilities for an inclusive and sustainable future’. For a long time, the idea of people with disabilities participating in decision making bodies was viewed with, to say the least, a certain amount of scepticism.

While there was sometimes cruelty in how disability was dealt with, often it was a well-meaning paternalism that enabled the idea that people with disabilities needed to be looked after, and that it was not for them to determine what was in their best interest. Sometimes this is disparagingly called ‘the charity model’ of disability. I don’t particularly like the term because it conflates the idea that the ‘model’ being bad, means that ‘charity’ is bad.

There is no ordering of the State so just that it can eliminate the need for a service of love”

The UN Convention on the Rights of Persons with Disabilities – CRPD – that Ireland has signed up to is framed on the idea of a social – or rights-based model – that people with disabilities have the same agency as anyone else, but that it is for the State and society to adapt to remove barriers to allow equal participation. This challenges many of the internal biases that people – and institutions of the State – held towards people with disabilities. But there is a danger of over-correction and the diminution of the work of carers who provide service to people with disabilities as part of removal of those barriers.

Pope Benedict rightly noted: “There is no ordering of the State so just that it can eliminate the need for a service of love [caritas/charity]. Whoever wants to eliminate love is preparing to eliminate man as such. There will always be suffering which cries out for consolation and help… There will always be situations of material need where help in the form of concrete love of neighbour is indispensable. The State which would provide everything, absorbing everything into itself, would ultimately become a mere bureaucracy incapable of guaranteeing the very thing which the suffering person – every person – needs: namely, loving personal concern.”

Whoever wants to eliminate love is preparing to eliminate man as such. There will always be suffering which cries out for consolation and help… There will always be situations of material need where help in the form of concrete love of neighbour is indispensable”

However, we should not fall into the reductive trap of thinking that disability means suffering. It means that people with disabilities have the same need for loving personal concern as everyone else, and that the State cannot replace that. Yet, the State has a role to play.

The modern State has a near monopoly on resources and has arrogated to itself the responsibility for framing society through the welfare state and to facilitate a social model that provides for equal access and participation of people with disabilities at all levels of society.

Representation

This has to do more than involving people with disabilities in discussions around the proper ordering of society, as mere consultants to be listened to if it suits. People with disabilities need to be in leadership positions when policy for a sustainable future if being designed.

There is much talk of representative democracy – gender quotas, recognising the diversity of modern Ireland’s population in politics – yet you don’t hear much about representation for people with disabilities. Discussions on future climate adaptation and mitigation policies are likely to impact people with disabilities in places like Kenya or Bangladesh more so than anyone else. If there is going to be a need for mass-displacement of populations from low-lying urban coastal areas, then how this happens, will hugely impact people with disabilities.

When the majority of people struggle to make ends meet and put food on the table, OPDs in Kenya or Zimbabwe cannot depend on funding locally”

At Christian Blind Mission (CBM) Ireland, we work with representative organisations of people with disabilities (OPDs) in the ‘Global South’. Just as there are groups such as ‘Independent Living Movement Ireland’ here, there are similar groups in Zimbabwe, Madagascar and every other country. But they don’t have the resources or the access to genuinely influence policy or to get a seat at the table. While they wait for resources from their governments to fund them, it is necessary that organisations like CBM, with the help of ‘charitable donations’ from people in Ireland, support OPDs to hold their government and society to account.

I often argue that civil society groups should justify their existence through financial support from the society’s they exist within, but when the majority of people struggle to make ends meet and put food on the table, OPDs in Kenya or Zimbabwe cannot depend on funding locally in the current economic climate. As the tax-base for their governments can be equally constrained and other social services are under-resourced, often OPDs are at the end of the queue. Changing comes passing slow.

The consultation carried out by the Joint Oireachtas Committee over two years was deep and comprehensive – whether it will make any great difference in the face of the Irish political system, it is hard to tell”

The consultation carried out by the Joint Oireachtas Committee over two years was deep and comprehensive – whether it will make any great difference in the face of the Irish political system, it is hard to tell. There is a long way to go here, but further to go in the countries CBM Ireland is working in. Getting OPDs into the corridors of power is important to bring about change at a national level.

Change

Like Ireland, forty, fifty or eighty years ago, the resources available here are much, much more than available in Burkina Faso or Laos. We – society and the Government – can afford to do much more.

Many of the missteps taken in Ireland can be avoided if OPDs are brought to the table now, to plan. Even when it comes to global issues, such as COP where the global response to climate change is being discussed, people with disabilities have no official voice there. We are fighting for that to change as well. Pardon the pun, but hugely important decisions for the future cannot be disability blind.

*This article first appeared in The Irish Catholic