Third-class citizens and carers’ plight

Sir — Although sad, it would not have surprised me that little or no mention would have been made in the general media

about the excellent Prime Time documentary Who Will Care for the Carers? broadcast on December 5 — except, perhaps, in those circles of full-time carers themselves, or because a journalist such as Brendan O’Connor (Sunday Independent, December 10) is a part of the lived experience.

Society dictates that we parents of children and/or adults with additional needs portray a happy face, an air of vocation to our cause and most importantly know our place and stay quiet if we have any issues with how we are being treated either by the State or by the circumstances we find ourselves in.

Some of us grin and bear it, some of us are angry, some of us are resigned to the fact that the cost of advocating and supporting our charges are such that the consequence of the resultant attrition is not worth the effort. None of us signed up to being a full-time carer. It happened, it is our duty, but the reality is that we all should be able to catch a break and have an opportunity to live an “ordinary life”, and our children, siblings or our parents should have that opportunity, too.

There is little doubt that Brendan walks in the same footsteps as other families who support their loved ones and I fear that Brendan teetered on the fine line of telling an honest truth about those parents who “pray” that their adult additional-needs child pre-deceases them, knowing that society is only interested in “placing” them somewhere that will meet their basic needs.

I am in no doubt that Brendan has also heard parents say that if they knew that they did not have long to live they would consider taking their charge with them, again as society has little regard for them. All you have to do is remember Aras Attracta, remember the case where support staff taped the mouth of a vulnerable service user or remember the case of the school principal accused of kicking an autistic child. None treated the person with the disability as much more as something that existed.

It has been 10 years since the United Nations Convention on the Rights of People with Disability (UNCRPD) was published — Ireland is one of two first world countries that has the distinction of not ratifying it.

Politicians have faffed over ratifying it because they say 1) We have no law on capacity on decision making, and 2) We have to have resources in place to support individuals with a disability before we ratify it. Baloney. First, Ireland is still happy to use the 140-yearold Lunacy Act to ensure any person with an intellectual impairment regardless of cause cannot have the capacity to make their own decision and are considered a danger to themselves and others. At 18 years, these “people” become a Ward of State or a Ward of Court and the law determines every decision. We do have an Assisted Decision-Making law but significant aspects have not been implemented.

Second, the reality is that we will never ever have all the resources needed to support individuals with disability. Both these are intentional barriers.

The UNCRPD, at its fundamental basics, is about affording the individual with a disability the right to “choose”. Choose where they would like to live, choose who they would like to live with, choose where and with whom they would like to go to school, the right to get gainful employment etc. It is about valuing individuals with a disability to the same level as the rest in society. Ireland is scared stiff that an individual with an impaired intellect has the right to choose for themselves.

Until such time as we see individuals with any form of impairment as equal citizens of this country rather than third-class citizens, their plight and the plight of those who support them will never be taken seriously by society. We should not have to beg to be taken seriously or to get a morsel of time, help or support in order to recharge our batteries. It is about society valuing all, including those with additional needs. Well done, Brendan, for articulating this. Padraic O hEadhra, Clonee, Co Meath