A man will be imprisoned in a room with a door that’s unlocked and opens inwards; as long as it does not occur to him to pull rather than push it.
~ Ludwig Wittgenstein
Last week, I met a mother in the car park of the airport filling station because that was the easiest place for her to find. She had driven 200km from the West of the country to visit her brain-injured adult son who had been placed in an institution for a six-month rehab stay – eight years ago. Since then, she has tried to get her son back closer to home. She has complained about the neglect and abuse her son experienced in his placement. She feels her complaints have not been followed up properly and she is being ignored. She is desperate.
Earlier this year, when the private company running the placement threatened the HSE to discharge her son, they had problems dealing with his family’s complaints, he was made a Ward of Court under the 1861 Lunacy (!) Act, despite the fact that the 2015 Assisted Decision Making (Capacity) Act was about to be commenced. The Ward of Court proceedings were ‘ex parte‘ (referring to a court application brought by one person in the absence of and without representation by, or notification to, other parties – though the mother was later allowed to be represented as a ‘notice party’); ‘in camara‘ (only officers of the court, the parties to the case and their legal representatives, witnesses and such other people as the judge allows are in the courtroom while the case is being heard); and under a Section 27 ruling (meaning that any reporting of the case does not include details such as would permit the medical condition of the person being the subject of the proceedings to be identified – all in the ‘best interest’ of the person concerned, whether they agreed or not).
The result of these Kafka-esque proceedings was, not surprisingly, that the Court agreed with the HSE. Her son was made a Ward – meaning he lost most, if not all, of his rights, including the right to complain. And it is now legally confirmed that his family has no say or rights whatsoever in relation to any aspects of their son’s life.
The ‘best’ part: these proceedings will be paid for by her son’s estate.
The mother feels utterly helpless. Her movements are not restricted but she has forcefully been stripped of her rights to companionship, her compassion, and her duty of care, for her son.
She has developed serious mental and physical health problems because of the way “the system” is dealing with her, her family and her son.
I don’t know anybody who wouldn’t agree that this is deeply upsetting and completely wrong. That it is cruel and should not be allowed to happen in one of the richtest and most developed nations of the world.
This mother’s story is well known to the HSE, officials and politicians.
Nobody has done anything to change this family’s situation.
The mother says that she will not rest until her son gets out of his current placement and is allowed to move close to home.
She is prepared to break out of her virtual jail imposed on her family by a well-oiled machine.
She says that she will never abandon her son, as has been suggested to her by well-meaning healthcare professionals on numerous occasions.
Even if breaking out of her virtual prison means going to the real jail should the ‘system’ retaliate, as she keeps telling her family’s story.
Can we and will we help this mother to pull that door and get herself, her son, and her family out of that virtual prison? Pulling that door, rather than pushing it, as everybody expects her and us to do?
A job for a Jail Breaker
If you or someone you know is looking for a truly exceptional job opportunity, check out the job advert of the An Saol Foundation who are looking for a Programme Manager.
Last week, Pádraig had another visit by a PhD student from UCD who is working hard to discover ways for Pádraig to play music and access different types of devices.
This time, he had prepared a Kalimba and a haptic/touch-type ‘keyboard’ to access and discover different kinds of sounds.
It was beautiful and truly amazing to see and feel the interest, energy and enthusiasm in the room. It was like a journey of sound discovery. Beautiful.
Pádraig liked it 5/5 and can’t wait for the next session.
Away from limitations and out into the wide open of sound discovery and the total enjoyment of new experiences. Here was someone pulling, instead of pushing the doors.
A classic jail break.
Donna Parrish said:
What a tragedy that poor mother is going though. Thank you for sharing her story and for ending this post with the wonderful music by Padraig.
Thank you for your commenting reaction, Donna, for reading the blog so regularly. – It is desperate. Not because there isn’t anything that could be done to change the family’s terrible situation, but because there don’t seem to be people willing to do so. The only people doing anything are those protecting the system, instead of protecting the family.