Family is an essential fabric of who we are—understandings forged in so many conscious and unconscious interactions—an environment where we are engaged and given opportunities to experience warmth and tenderness—where children are challenged and they, in turn, challenge. Trust is burnished by active reciprocal engagement and its calibration reflects the many-layered nuances of family life. Such simple understandings as respect, warmth, looking out for one another, sharing, expressions of concern; while not taken for granted, these are recognised as vitally important to the human condition, and their absence is equally recognisable.
Frontline, over the last twenty-five years, has published good national and local intellectual disability news stories. Also published were many articles and commentaries on the difference that is made by active engagement with people with an intellectual disability. Many people’s stories over those years have demonstrated the qualitative difference that is made when activities of daily living are personalised—reflecting trust, respect and forging relationships with people, as opposed to treating them as objects of reference.
A core objective of Frontline has been to place the person with an intellectual disability at the forefront as people—people with rights, feelings, the need for warmth, affection, security, fun, to be loved and cared for. Not everyone is suited to a caring role, but there is an enormous responsibility on those charged with the care of others, regardless of whether they have an intellectual disability or not, to engage respectfully, to foster relationship—to attune themselves to those who are not in a position to communicate their needs. A punitive approach obliterates any possibility of meaningful relationship.
When families, for whatever reason, entrust the care of their son or daughter to another person or agency, whether statutory or voluntary, it is on the basis of trust and in the expectation that any engagement with their family member will be respectful and personal.
Commentators have used very strong language to describe what was shown to the nation on the recent Primetime programme on Áras Attracta. There is, of course, the danger that many of the good things that happen on behalf of people with an intellectual disability throughout the country could be lost. However, given all of the horrible observed behaviour of persons employed in the caring role, the most appalling element for us was the non-recognition of the person. Apologists have talked about the lack of staffing and underfunding. No amount of staffing or funding can be a substitute for treating people respectfully and engaging with the people with whom staff are paid to interact.
In this issue, Paul’s sister Marcella O’Sullivan tells his story, describing how his challenging behaviours were cited. It is likely some of the behaviour seen on the Primetime programme could have been described as ‘challenging’. But no one needs to be an expert to understand than the lack of engagement by staff members was a crucial component in such behaviour. How had the need to use one’s mobile phone, or to smoke a cigarette, become more important than doing the job for which they were employed? HIQA visitations do provide some reassurance, but what is crucially needed is for people’s lives to become more engaged and meaningful. Very often training fails because of a lack of follow-up and implementation. This requires that those in leadership positions must be courageous, proactive and constantly aware that the core component of active engagement and relationships are based on respect. However, all involved in caring roles must own their own behaviour and be accountable for that behaviour.