This is the story of Paul and his sister Marcella. For most of his life, Paul lived in an institution with unsatisfactory care. Marcella fought for over ten years to give him a better life. She became Paul’s voice, and because of her advocacy, Paul now lives in his own home with support staff. Marcella writes about the need to listen to the person, and not only see the label of a serious disability.
This is a story with a bittersweet ending, the trials and tribulations in life, power of control, the survival of a vulnerable man and the journey that had to be taken and the lessons to be learned. It’s a story about simple skills such as listening, understanding, patience, trust, honesty, observing and (most important) belief that took so much courage, bravery and strength so his voice could be heard, so he too could have a natural life with the normal things most of us take for granted.
He will teach you that the small things in life can mean so much, when value, kindness, respect, dignity, worth, care and love are part of being seen for who you are, and not the labels attached to you. He will also teach you that it is never too late to learn new skills, and that everyone is someone when given the right opportunity. Most important, this story is about the roles family have to take on, when someone has complex needs.
As a society we are too quick to judge a book by its cover- This is a voice for the voiceless in whatever journey they are on because roads can be long and winding, but persistence can help one discover who they really are and why each journey is so important. We all want to be seen for who we are, and grow to be who we are meant to be. This story is all of that and more, because love and family conquered the impossible and broke down the walls, against all odds.
We all have a different make up; we look different, but we all have the same mental, physical and emotional needs. Just because one has a disability, it doesn’t mean they are born without those same needs. We all laugh, cry, hurt, have loss, and get physically sick at some point in our lives. Whether you are non-verbal or have any type of a disability, you still have the same needs—but as a society we forget that.
We all have weaknesses and strengths; just because you may have a disability does not change that either. What a mainstream person may have in strength may be the weakness for someone who has a disability, but the strengths of someone with a disability may be the weakness of someone in the mainstream. Mainstream people may have more opportunities through education, but they may have no experience of life and the struggles encountered by someone with a disability. All of us have a disability when facing new challenges or learning new skills—that’s what someone with a disability encounters every day. If opportunities aren’t given to help manage the disability or to grow as a person, that’s when life becomes a real struggle. People like Paul can end up vulnerable and out-of-touch with society and life itself-
So, I guess what I am asking is, SEE THE PERSON NOT THE LABEL. When you see the person, the person grows. When you see the label, the label grows. Society must not disable people, but enable them to be all they are meant to be. Remove limits by changing your mindset.
As I discovered, if those around someone with a disability, have a mindset closed to change and to up-skill themselves, and if they only believe in their way, then the person with a disability, who has complex needs and is reliant on those around them to help them change and gain skills, has no chance to embrace life and all it offers.
I guess the friendship of support staff is the vital part of the story for someone with complex needs. Support staff are the next thing to family. Again as a society, we all choose our friendships. Someone with a disability often doesn’t have that opportunity to choose, and that is key: if the support is compatible, they will grow together as individuals.
Paul is a 47-year-old non-verbal man. As his sister, three-and-a-half years younger, I have became his voice over time. Together we took a journey, for Paul to be heard and to be seen for more than just his labels. His life journey shows his strength to survive in any situation.
Paul went to a special school in Cork because he wasn’t able to fit into the mainstream sector. But teachers didn’t understand him; he was the bold child who got bored easily and caused disruption in the classroom. So at eight, he was moved to a place ‘that would understand his needs better’. But within a short period Paul started to regress. No explanation was given to him; he was now living in a residential school, away from home, with others he didn’t know. He came home every second weekend and for short period at holiday times, but the institutional setting began at that point. I even remember as a little girl going to collect Paul, putting my face up to a glass door trying to see how he was. Even then I had a strong intuition that it was wrong for Paul, and that they didn’t understand him.
Paul never learned to read or write, and he lost the words he had once had. Boredom was always an issue. He developed ‘challenging’ behaviours and by the time he was coming into adulthood, the only place available to him was the psychiatric sector. Paul was on a cocktail of medication by the age of 17 years. Nothing was ever explained to him—he was just landed in the settings. At 18 years old, he was in a lock-down, high-security unit in Cork.
As his sister, again reflecting back to me as a youngster, he was someone who knew words would never help him in the settings where he was. He showed his annoyance and frustration in behaviour—the only way he could communicate. His behaviour came out of frustration—and he was given the diagnosis of challenging and self-injurious behaviour. Paul was stated to have mental retardation—over time the term changed to ‘mental handicap’, to handicap, and today it’s known as ‘intellectual disability’.
I believe that with no real intervention, apart from medication, from the age of eight, Paul communicated quite loudly about his dissatisfaction of where he was. Watching him from young boy to adulthood, I saw Paul change and the person he had been disappear. He wasn’t being heard and the more he behaved badly, the more medication he got. He had no voice; professionals deemed that the best place for him was in a psychiatric setting.
I often hear that ‘that was the way it was back then’, and ‘it was the only answer they had.’ Maybe so, but does that let people off the hook so easily? ‘Back then’ is still very much the recent past for Paul’s journey.
Over the years Paul came home less frequently. For many years I didn’t know where he had gone. In the late 1980s, Paul ended up in the Cork Regional Hospital with a burst appendix. Not much was said to me, as the youngest sibling (also ‘seen and not heard’). I know I did ring the hospital, but because I was under 18, I was ignored. Later, in 1990 I found out where Paul was and I got the courage to go to see him. I knew it was right thing to do, and that it wouldn’t be a welcome visit. I rang the bell and I must been waited over half hour before they brought Paul out. The man I expected to see was not the man standing in front of me. He was frail, sedated and a very frightened. But what struck me was that he recognised me, and for a fraction of a moment, he allowed me to see that he was ‘still in there’. That day I made him a promise I would do everything I could to help him to have the life he deserved. I had no idea how I was going to do it, but I knew I would someday.
Over the following years I continued to see Paul. It took me five years to get him to the front door of the place, the fear of the outside world was so frightening to him. Paul was then in his mid-twenties, 4ft 10inches, weighing about 6 stone. Any time I saw him he was so sedated, he could hardly walk. Two staff members brought him out—men over 6ft tall. What a contrast!
I slowly started to question things, but always the situation was defended. I could see intimidation from the front door, so I definitely questioned the level of control and intimidation inside. It was like Paul was living in a prison.
In 2001, I was finally able to speak up on Paul’s behalf. When I called one October weekend, PAUL arrived with infected wounds on his face, with half his ear gone and his cheek bones protruding clearly in his face. I was told he had received antibiotic treatment the month before, and didn’t require any more. Paul’s hands were blown up like balloons from being tied behind his back—‘for his protection’, I was told. His weight had dropped further, and he was in nappies. Paul looked extremely unwell and nothing was being done. By then he was over 30 years old, and although I had no idea what to do, I knew I couldn’t just walk away and say nothing.
I went to an MEP who understood that the situation was as serious as I did. She came with me to see Paul and she sat on the floor crying with him, while two staff members held him down during our visit. We both went to the Minister for Education at the time and he told me: ‘I know it is hard, but accept the situation and move on.’ He admitted that the photographs were hard to look at, but there was nothing he could do. I went to the Minister for Health, and he didn’t even know where the place was. I put an article in the paper in December 2001 and, finally, that sparked serious interest in Paul’s health. I spoke on radio stations about the situation and it was always only about how Paul had no voice to describe the place he was in and his life.
Paul was finally seen by a specialist; He had thread worms and he was ulcerated from the back of his throat the whole way to his bowel. Can you imagine the pain he was in? Even today he has a huge scar on his face and also half his ear is gone, as well as the scar from his burst appendix –all reflect that time.
I believe my intervention saved Paul’s life, because with the huge amount of medication he was on, his terrible physical condition would have been unnoticed until it was too late. He was in a lock-in situation and there were no external checks on how the place was run. Over the next 18 months, meetings began and professionals were brought in to see what might be done for Paul. In May 2003 I was asked to step back and allow the HSE to do their job and follow the recommendations given to help Paul. I knew leaving that day that nothing would be followed through if the spotlight were removed. Within six months all of the planned changes were stopped and the recommendation for Paul to leave within 18 months didn’t happen. So his voice was quietened, I was silenced and the old routines continued.
I continued to visit Paul, to watch and observe both him and the place he had to call home. Paul would come out dirty, and in clothes 2-3 times too big for him. All I ever heard was that Paul was to blame for all of it, with no acceptance of responsibility by the staff. There were up to thirty inmates at any time, all with varying psychiatric needs, and only medication as an intervention. Most of the inmates had an intellectual disability which added to the difficulty in understanding their individual needs. All the staff had psychiatric training, but none had intellectual disability training; I could see problems without ever understanding anything about how the system worked.
In 2005 I stopped listening to everyone else and began to hear Paul. He needed someone to listen to him, and even after all the case conferences, I wasn’t listened to either, as his sister. I continued to observe the place, but Paul needed me to believe in him and his voice, so I began to educate myself- I studied about special needs, ABA, and about Paul’s medication. I started to bring Paul to my home in Ennis, to get a clearer picture of who he was—without all the labels. Staff had tried to make me be afraid of Paul, but I can truly say I never felt threatened or afraid of him. I got to know Paul , and although I knew the journey was going to be hard, I knew we would get there.
More problems became evident in the place Paul lived—he would have bruising on backs of his legs, his face, continuous gashes to his head and black eyes. When I questioned his presentation, the intimidation I encountered for looking out for the welfare of my brother and the care he was encountering, was far from pleasant. In 2008, I ended up taking the case to the Equality Authority for Paul’s human rights to be heard.
In the meantime, during his visits to Ennis, I had come to understand Paul’s ways of communicating without words. He used his hands and thumbs to indicate different things, and I learned about the side effects of his medication. Slowly he began to relax more—as he learned that he could trust me and that was listening to him. I learned different strategies to help eliminate Paul’s stress slowly he began to grow and show that his spirit was still very alive. I started from when I had known Paul as the little boy, not the adult with the labels. I had to become his voice, psychologist, behaviourist, carer, sister, family, tutor and mentor, salt, o.t. and every other role he needed. But , the most important thing was that Paul was still the person I remembered, and I knew there was a lot more to him than met the eyes. Despite the many challenged we experienced, really all he needed was the right person with the right support to help him communicate without words. I became his multidisciplinary team, so he could move forward.
Once again we had to publicise the continuing problems at his care-institution. The Equality Authority listened and an investigation was carried out, with more recommendations. But in 2010 and 2011 things got very serious: head gashes, epileptic seizures, rapid changes in medication, medication not given when he was coming out for weekends, blows to his face and not being told of incidents, 22 staples to his head, 18 teeth extracted. One staff member said to me that Paul would be killed in there if something wasn’t done. No one has been held accountable for any incidents and reports didn’t reflect the truth of what had happened.
I was under great stress and worry, trying to protect Paul in that setting—with their word against mine. According to them, Paul was receiving the best of care. I was dealing with intimidation, as much as PAUL was. Many weekends I found it hard to go to Cork, but I knew that once I had started this journey in 2007 there was no stopping until Paul was safe.
I heard that staff were suffering from the stress I was causing. The sarcasm in Paul’s files made unpleasant reading, but I continued to document what I saw. Money was provided to ‘do up’ the place, but no one dealt with the problems of care. I reported an incident to the Guards three times, before anything was written down—and still nothing came of it.
I was shown many places that Paul could transfer to, but nothing seemed different from where he was. I believed Paul deserved a home of his own, not just a building, but a home life. I wanted Paul moved to Ennis, closer to where I lived, nearby if anything happened to him.
Paul finally received an appropriate diagnosis: autism, with sensory and environmental overloads. In November of 2013, after eight years in residential care as a child and 31 years in a lock-up institution, Paul finally left institutional care. He now lives in his own home with support staff. All the one-on-one work I had in place has been transferred into the service. His communication methods are finally seen for what they are, and understood. He no longer closes himself off and the intense tension he had in his body is gone. He knows as long as I am near, he will always be safe. Supporting staff are very aware of his past and triggers, so he can stay in the moment and look to a bright healthy future. He is slowly gaining back his identity and going forward independently. His clothes do not have name labels on them; no one else wears his clothes. His environment is suited and adapted to his needs. He is supported to maintain his own home and to learn the skills of personal hygiene, laundry, cooking, cleaning, paying bills and he is becoming integrated into his community and meeting new friends. He is beginning to understand about his own money, having treats like hot chocolate or ice cream, etc. He has a passport, travel pass, bank account—all in his own name as an independent individual. Paul has grown a lot in the short space of one year. The self-injurious behaviour strategies he had adopted to survive are now much reduced and he is embracing a life with both quality and quantity in it. Paul is growing into the man he is meant to be and no longer lives in fear. He has begun to hum to music and is slowly learning some sounds to mean yes or no. So again nothing is impossible and he may finally believe he truly has something to say in words because he knows it will be listened to.
Paul still has a lot of learning to do, but he can do a lot of teaching. After all our journey together, Paul has shown that it is never too late to change and learn new things. He was a determined man who wanted to be heard. Now, I can watch him from a distance, seeing him grow in independence because his voice is finally heard by those who support him. When he needs me to support him, I will stand beside him and we do it together and when he needs a speaking voice, I will speak on his behalf. I knew that I was taking huge risks in speaking up for Paul along our long journey. But I had made a promise to him and I had to keep it. There is no justice for those who are vulnerable in care; even though Paul’s injuries spoke a thousand words, but they were not enough.
I know some people are fearful of HIQA coming in, but something is needed to protect all the Pauls of this world. At least HIQA is one safeguard. Families should not be discriminated against for speaking out about inadequacies in the care of their family member. Doctors need to listen to families—they know their child or sibling. Organisations need to welcome and listen to families, not push them away. For society to change, we need to LISTEN.