‘The choice not to be cared for’ - guest blog post from Maman Poulet

Published: Sunday, October 18, 2009

Suzy Byrne blogs as Maman Poulet at http://www.mamanpoulet.com/.

The launch of the new NWCI website occurs at the same time as the launch of a new policy document on Who Cares. The invitation to make the inaugural blog post on the new website gives me the opportunity to raise a question on the choice not to be cared for.

As a disabled woman working with other people with disabilities on issues concerning independent living, I have observed how care and the way in which it is spoken about is something which has not been at the centre of the debate towards supporting people with disabilities in achieving choice, empowermet and control of our bodies and our lives.

There are many people throughout the state providing support to people with disaiblities who are not paid or recognised for the contribution that they provide and resources that they save. Those who receive this support (ie people with disabilities) are rarely asked who they want to provide this support. This care is often provided unmonitored and unsupported with little respite for all involved.

Very few people receive paid personal assistance to enable them to live their lives independently and those that do receive it are in fear of it being cut and of the service provided being medicalised to an extent which will remove their choice and input and control. Many others are receipt of home help, another occupation which is undertaken mainly by women with poor working conditions and poor pay. For those in receipt of home help they don't get a choice of who will provide it to them, when it will be provided and are too afraid to complain about it with a fear that they will lose it.

If there is no paid or unpaid care available many people with disabilities are placed in private nursing homes, the new institutions of 21st century Ireland. Together with other publically funded units, people with long term illnesses and disabilities reside in these closed spaces which have taken over from the residential or congregated setting specifically for people with disabiltiies many of whom have closed down recently or will close in the years to come.

Those who have recently acquired their disability often stay for months on end in acute hospitals, waiting on a 'care' package to come available so that they can return home or to a new home if their previous home is not accessible. These people are referred to as the bed blockers - dehumanised and not asked about what type of support they would like and not knowing about it either because there is no access to rights based legislation and supports for people with disabilities.

The assumption (and often reality) that is made of partners of women (and men) with disabilities that they will provide care is an area that has yet to be discussed fully in this country. Many of us do not want our intimate partners involved in personal care, we don't want to always have to rely on the people we love to have to assist us. And for some it places us at risk of domestic violence and abuse, unable to escape.

The UN Convention on the Rights of People with disabilities was signed the Irish Government in 2007. It has yet to be ratified by the government. Article 19 states

States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

The research, debate, policy and legislative framework that is needed in order for Ireland to implement this article and the other articles within the convention will be a painful and contentious one for all invovled. I don't just mean from a fiscal point of view. It must be about families, organisations, people with disabilites and others realising that the assumptions that are made about people with disabilites and our choice, respect and dignity have to change and that the choice of who does the 'caring' must change too.