However careful we are, and however slim the odds, a severe brain injury is something that can happen to anyone, and any family, at any time.
Pádraig, Reinhard and Pat
Well now. No Risk No Fun? Is that not a little irresponsible? Especially if we are dealing with those who already suffered a devastating brain injury?
I’ll come back to that in a minute.
First, and on behalf of Pádraig, I want to thank the girls of St. Mary’s HFC Secondary School. Last Thursday, they had their Christmas Jumper Day and donated all proceeds to Caring for Pádraig.
What the girls have done, keeping Pádraig in their minds during this time of Advent and preparation for Christmas is extraordinary. As this is an all girls school, Pádraig never had a direct connection with the students there. For them to decide to support Pádraig so generously was extremely kind. What they contributed to his fund will help him to get the support he needs in his efforts to enjoy as much as that is possible his new life.
No Risk No Fun is the favourite mantra of one of Pádraig’s favourite (and that of many, many others) and most experienced therapists.
She’s everything but irresponsible. She just acknowledges that most of the fun things we do, have a calculated risk associated with them.
Soccer, rugby, horse riding, surfing, swimming, climbing, running, driving… the list of risk-associated fun activities is endless.
For Pádraig it is standing, and walking in the Lokomat. Yes, there is a risk. And yes, he tremendously enjoys it because, as he says, that is when he feels alive.
He has also continued to train for next year’s second edition of the Iron-Month in May, an inclusive event when more than a hundred people will complete the famous and most difficult Ironman distances over a month, according to their abilities.
He is cycling at considerable speed, all by himself, covering a distance of nearly 5km every day.
But even if his decision to be active, to cycle, to stand and to walk, is a decision that seems somewhat too dangerous to some for whatever reason, he is entitled to take that decision in the same way that some of us take the decision to sky-dive, ski, or kite surf.
Only that in Pádraig’s case it required legislation to clarify his right to do so. The right to take decisions that do not seem necessarily ‘wise’ to others. This legislation is now six years old but it hasn’t been commenced yet. When all goes according to plan, it will be commenced in June of next year, seven years after it was approved by the Dail and signed by President Higgins.
Pádraig has participated in many activities promoting the new act. Together with Pat and myself, he was invited to contribute to a book which just has been published by the HSE and can be downloaded for free here.
It is very comprehensive and nearly 300 pages long with a wide variety of contributors. It is part of the efforts by the HSE to promote the law, make it more widely known, and to educate, especially those who will have to apply it.
Here is the article —
Decision-Making, Consciousness, and Civil Rights: The Categorial Imperative for Self-Determination. A Personal Account.
Pádraig Schäler, Patricia O’Byrne and Reinhard Schäler
‘However careful we are, and however slim the odds, a severe brain injury is something that can happen to anyone, and any family, at any time.’
The consequences of a severe Acquired Brain Injury (sABI) for the injured and their family are devastating. In one second, life changes so dramatically, it becomes unrecognisable.
Until it becomes the new reality. With huge, nearly unbearable, challenges.
A sABI is a brain injury that involves a long period of unconsciousness (coma) and a prolonged disorder of consciousness (PDOC). Persons with a sABI are very highly dependent, are often non- or minimally-verbal, and require, in most cases, life-long support with basic activities of daily living (ADL) as well as life-long rehabilitation.
Those injured are generally not given much hope for the future. Their ‘treatment’ is often reduced to a basic maintenance programme, hydration, nutrition and medication, where the end always seems to lurk just around the corner.
In Ireland, any decisions for those adults with a sABI are ultimately taken by healthcare professionals and the HSE. Current law does not provide for a role for the family in any decision-making for the injured, ‘incapacitated’, person (The Assisted Decision-Making (Capacity) Act 2015 will eventually repeal the Lunacy Act of 1871 and existing case law).
Pádraig, our son, then 23 years old, suffered a devastating brain injury in 2013, when he was hit by a 4.3-ton van in 2013 as he cycled to work one bright morning on Cape Cod, where he had planned to spend the summer on a J1 visa. Nobody was ever prosecuted for the accident.
On the Cape, doctors suggested organ donation to his best friend and, after our arrival, to the family. After about a week, when Pádraig was still in an artificial coma, we, his parents, were repeatedly asked whether we really wanted an ‘intolerable life’ for Pádraig as he had not been showing signs of consciousness. Back in Ireland, in Beaumont Hospital at his bedside, we were asked which nursing home Pádraig was going to go to. That was the day we reassured him that he was going to live at home. There was a waiting time of at least one year for a transfer to one of the three suitable beds in the National Rehabilitation Hospital (NRH), the only such facility in the country; even then his stay was going to be for just about three months, the time required by the NRH to assess him and plan for his future care.
Our family is Irish-German. Pádraig has dual citizenship. We decided to move with him to Germany. Pádraig had gone to the local primary Gael Scoil, Scoil Mobhí. His secondary school was Coláiste Eoin. He had studied Irish and History in Trinity College Dublin (TCD). He loved living in Ireland. Moving to Germany was not by choice. Uprooting and breaking up the family, leaving his two sisters behind was heart-breaking. But none of us saw a tolerable alternative.
In Germany, we were made legal guardians (‘Betreuer’) of Pádraig by the courts, following a lengthy process of independent medical and legal reviews and including a court hearing at his bedside. When asked, the judge explained that one important lesson from Germany’s history was that patients had to be protected. Doctors had the power to put patients into any state of reduced consciousness, the judge said. Thorough checks had to ensure that history would not repeat itself.
Our being appointed guardians by the court meant that we could now legally assist Pádraig making decisions about his medical treatment, his residence and his financial affairs.
A few years later, and back in Ireland, we learnt that this was far from common practice. The doctors in the hospital where Pádraig was assessed for a home care package told us that they would decide on his medical treatment. HSE representatives told us that agency carers would, if they felt it necessary, call an ambulance and transfer Pádraig to the A&E of the nearest hospital, without consent or consultation. We were handed a copy of the corresponding HSE guidelines. Banks would not provide us with any information on his account as this information was not requested by Pádraig himself.
When we pointed to our status as legal guardians appointed by a German court, we were told that, according to the legal advice received by the HSE, this court order had no validity in Ireland.
This is when Reinhard rang the German Embassy in Dublin to enquire about their potential reaction to Pádraig looking for protection from the Irish authorities in the extreme case of the full rigour of the Lunacy Act being applied. Thankfully, the situation never escalated to that point.
Pádraig made a significant recovery from his injuries. His tracheostomy, suprapubic catheter and artificial feeding tube (PEG) had been removed. He began to make pronounced, very clear voluntary movements. And while he was still non-verbal and completely dependent for all activities of daily life, he had come off all medication. Above all, we had established that he could hear, see, read and understand everything – in Irish, English, Spanish and German.
Most importantly, he could communicate with tongue, hand and foot movements, and by using a switch (‘bleeper’) introduced to him by an outstanding therapist in the NRH who had sourced it from the Royal Hospital for Neuro-disability, in Putney, South West London.
Professor Fins, in his highly acclaimed book on sABI, Rights come to Mind-Brain Injury, Ethics, and the Struggle for Consciousness, reminds us that not too long ago everybody had a right to vote, except if they were women; everybody had a right to education, except if they were black. We might add that everybody had a right to marry, except if they were a member of the LGBT community. Today’s civil rights issue, Professor Fins says, is that of the right to rehabilitation for those with a severe brain injury – for those still left behind.
There are humble beginnings – beginnings that merit the full support of lawmakers, health professionals and society as a whole. Ireland signing the United Nations Convention on the Rights of Persons with Disabilities (CRPD) is one of those, although Ireland has still not signed the Protocol to that Convention which would allow people with disabilities to make an individual complaint to the Committee. The Assisted Decision-Making (Capacity) Act 2015 (the 2015 Act), is another step in the right direction of following the Categorial Imperative for Self-Determination especially for those who, because of the gravity of their injuries, still need a substantial step to be taken by society and lawmakers Towards a New Frontier for Human Rights.
In the meantime, a good portion of ingenuity, humanity and a strong dose of common sense are required to by-pass the dreadful exclusive restrictions imposed by the Lunacy Regulation (Ireland) Act 1871 – an Act that even pre-dates the foundation of the State; an Act that we agree has no place in our modern civilised society proudly promoting equality, integration, participation, equal rights, and self-determination as its core values.
After his accident, we had tried on several occasions to get a statement for Pádraig’s bank account, which he had used to manage his financial affairs – consisting mainly of regular pocket money income and some once-off gifts from his family. There was no way the bank would issue that statement without Pádraig himself requesting it – or us going through highly complicated, far-reaching proceedings. (We had always explained when in contact with the bank why we were making the call and not Pádraig himself.)
One bright summer morning, Pat and Pádraig went to the bank where his account was held, equipped with the bleeper used by Pádraig to communicate: one bleep for ‘yes’; two bleeps for ‘no’; three bleeps for ‘maybe’ or ‘I don’t know’.
Pádraig arrived at the bank with a bright smile on his face, as suggested to him by Pat, ready to let the bank clerk know with a determined bleep that he was indeed looking for his bank statement. Pat explained what Pádraig was looking for and that she interpreted for him because he was non-verbal. Pádraig continued to smile. Without further ado, the bank clerk happily complied and issued that long-awaited statement.
In a similar fashion, Pádraig has voted in several elections since his accident, from local to national to European elections. He takes his duty as a citizen very seriously.
With our assistance, he set up Cúram Phádraig Cuideachta Faoi Theorainn Ráthaíochta, employing his own carers.
Pádraig is also the man behind the An Saol Foundation CLG, which is running a three year HSE-supported pilot demonstrator project in Santry, Dublin, the An Saol Rehabilitation Day Centre. It is the first such centre in the history of the State, offering state-of-the-art day rehabilitation facilities in the community including physiotherapy, occupational therapy, speech and language therapy, robotic gait therapy, and social rehabilitation activities to those with a severe brain injury and their families, to those who up to very recently had been left behind and without a voice.
During a recent visit to the supermarket, a friendly, well-meaning assistant came up to Pádraig and Pat. She smiled at Pádraig and said, looking over to Pat, ‘He is a great little helper, isn’t he?’ Pat, although appreciating the intended kindness, was more conscious of Pádraig’s dignity and the need to protect him from pity, answered, ‘Sure, he is of no help to me at all here in the shop. But, you see, his wheelchair is great for hanging heavy shopping bags.’ She did not mention that nor was there anything ‘little’ about him at 6’7”. With that, Pádraig showed his great infectious smile, causing the lady to smile too.
Pádraig’s ability to preserve his sense of humour, to non-verbally communicate and share that humour, to spread happiness is uplifting and inspiring for all who meet him. While he is fully aware of the restrictions imposed by his devastating accident, he does not perceive his life as ‘intolerable’, contrary to the belief of some of the professionals who strongly and repeatedly suggested very far-reaching decisions should be made for him.
With the help of one of his sisters, he discovered the pleasure of connecting with his friends through regular Zoom calls adhering to the COVID-19 social distancing guidelines – on most occasions from a sunny spot in the back garden.
In addition to the physical injury, deep trauma affects the injured themselves and those close to them. Its impact is rarely acknowledged, never mind addressed appropriately. Its significant effects on their mental health cannot be overstated, often bringing with it family breakdown, economic hardship and worse.
Life with a severe brain injury is incredibly hard, for those directly affected and for their families. It is possibly even harder if that brain injury happens to a young adult with their life and dreams ahead of them: dreams of finding love, a partner and, perhaps, establishing a family.
Those with a sABI not only deserve every help we can give them to realise their ability to the fullest, they have a right to receive that support.
Above all, the voiceless have to be given a voice and with it the power to inspire, drive and define developments that will make equality and self-determination real for them.
Decision-Making, Consciousness, and Civil Rights are connected by the Categorical Imperative for Self-Determination. The 2015 Act is a long overdue step to the realisation of the right of self-determination.
Pádraig, Pat and Reinhard, for one, are very clear that there will be ‘No Decision about Pádraig without Pádraig’.
This is chapter 1.3 from the recently published book, The Assisted Decision-Making (Capacity) Act 2015: Personal and Professional Reflections, edited by Mary Donnelly and Caoimhe Gleeson, published by the HSE, The National Office for Human Rights and Equality, and the Policy Division Support Service, under a Creative Commons License. You can download the book here.
The book is dedicated to everyone who has advocated for changes in legislation in this area, especially those who are no longer with us.