For as long as she can remember New Ross woman Karen Sinnott felt she was a problem State authorities weren't interested in solving.
Born profoundly Deaf, it took three years for Karen to access supports as a child. Her mother Eileen knew her third daughter was Deaf from when she was six months old.
'Call it mother's instinct. I knew from her older sisters that this was something wrong. A consultant at Waterford Regional diagnosed her when she was three.'
Karen's father Sonny said once they accessed the health system the help they received was brilliant. 'When we found out all we got was: "your daughter is Deaf, good luck". Thankfully we met great people along the way. Without them I don't know where we'd be now.'
Hearing for first time
Karen had a cochlear implant fitted when she was five. Her mother Eileen recalls the day clearly: 'After the operation we went into the toilet and I flushed it - it must have been 20 times - and that was the first time she heard a sound. We were near the airport and she could hear planes passing overhead and there was a man cutting the grass and there were cars. She was just absorbing the sounds.'
'That is why my speech is a bit delayed,' Karen says. 'I was delayed for five years in terms of learning to speak and I am still learning.'
This developmental setback would haunt Karen as she tried to negotiate the labyrinthine Irish mental health system in her teens as a Deaf young woman.
Speaking to this newspaper during Mental Health Awareness Week, Karen (28) said: 'I started to have mental health problems when I went to boarding school in Dublin. I spent five days a week there. Unlike my sisters I wasn't getting any hugs or kisses or bedtime stories. I really missed home.'
Karen spent 17 years there, suffering in silence.
'The house mother hit me and one of the staff slapped me and had me sit in the corner all night with no sleep. I was three and a half.'
On another occasion when she wet the bed, Karen was told to lie in her own urine the following day.
'They also made water drip on her hand for three hours,' in a crude form of Chinese water torture.
On a visit home to New Ross she was repeatedly assaulted by someone outside her family circle.
Her mother, Eileen, who was also assaulted in her youth, did her best throughout and learnt sign language to communicate easily with her daughter.
Sonny said: 'During her school years the funding was so bad. Karen went from Waterford train station with two other children from the south east to Dublin every Sunday and Eileen ended up having to take them. She'd stay over with family in Dublin, come home and then have to go up and collect them on Friday morning, so the other daughters didn't have their Mammy for three days a week.'
Like all sisters, Karen quarrelled with hers, and used to run away from home.
She was a teenager when she started self harming.
'I was in secondary school. I'd never heard of self harming. It was two and a half years before I told the psychologist I had for my cochlear implant about it.'
A talented swimmer who represented Ireland in America aged 14 in an internationally competition for the physically challenged, Karen said she struggled with demons while wearing a smile.
When she did reach out for help it took nine months for her to be seen at Wexford's Child & Adult Mental Health Service.
'I saw a psychologist and told her about my self harming and an overdose I attempted. He diagnosed me with severe depression. I had a mental health problem but I didn't know I had one. I felt different but I didn't know what it was.'
Karen was prescribed medication to treat the depression.
By now she was 16 and was living with her grandparents. Eileen agreed that she should try medication but Karen's condition got progressively worse and she spent time at a psychiatric hospital in Warrenstown.
Sonny and Eileen couldn't believe it when her daughter started getting her disability payment aged 16.
'It caused huge problems. I always thought it was crazy for a child to get that much money. It's the same as the dole,' Sonny said.
Karen continued training for swimming competitions until she was 16, beginning at 5 a.m. on Mondays. All the while she was very secretive about where she cut herself, so nobody would see the marks.
She sat her Junior Cert and passed every subject, despite not having studied much.
'All of my family couldn't believe it because I had been in Warrenstown from Christmas till May right before the exams. I didn't study and there were only four in our class in the school for the Deaf in Dublin.'
She went on and completed her Leaving Cert Applied course a year later as she had to spend a long time in the Department of Psychiatry in Waterford.
Describing the 41-bed unit as being located in the dungeon of the hospital, Sonny said it was a horrible experience for Karen and the family to see her in there.
Having recovered sufficiently to leave the unit, Karen sat her exams. 'It was so easy. I flew through the exams and hadn't done my Mocks.'
Her mental health worsened afterwards and she attempted to take her own life when she was 18, having been expelled from her boarding school for self harming.
'I felt so lost. I didn't know what was up or down. I was on so many meds. I tried to take my own life, not once but many times.'
She said: 'It's not about being Deaf. It's my language. The people I saw don't have my language, which is sign. There were so many times in the past when I needed help and went to A&E and saw a psychiatrist and I never was able to express myself. Now I can lip read and there are interpreters all over Ireland these days, but back then it was different.'
She was admitted to St Senan's Psychiatric Hospital in Enniscorthy.
'It was there when I started hearing voices. It was as if there were people talking behind me, except there was no one behind me. People think that when you hear a "voice in your head" it will be distorted or sound strange but these voices weren't like that. It was as if there were two men talking just behind my back, men I didn't know. What was particularly scary about these voices is I am Deaf and don't normally hear people talking with such perfect clarity.
'I couldn't understand what these voices were and why I was able to hear these two men. I became scared, thinking that people could somehow read my mind, take my thoughts and know everything I was thinking.'
Karen started to suspect the diagnosis of depression and emotional unstable personality disorder that she was given was wrong.
'I was really, really bad. I said to a doctor that I was hearing voices telling me to kill myself and my Da and the doctor laughed at me and said: "How are you supposed to hear a voice if you are Deaf"?'
Prisoner of silence
Aged 21 Karen told a psychologist in Dublin that she wanted to go to London for treatment at a clinic specifically designed for Deaf people suffering from mental health problems. Her request for Treatment Abroad Fund grant was denied.
'They emailed me back and said no, I don't think you need to go there. There was only one specialist in Ireland at the time for Deaf people and he had to travel all over the country. When I am in the throes of depression or psychosis, it becomes almost impossible to engage with someone through spoken English.
'The key to successful mental health care is good communication. Peer support is a big part of recovery but I found it hard to engage with other people when I was in hospital. I was encouraged to go to group therapy without an interpreter - but I had no idea what people were saying. In the end I just walked out.
'With a physical illness or injury, the diagnosis is by sight and touch, but with a psychological illness, diagnosis is through therapy - and therapy is reliant on good communication. For me, this means therapy in Irish Sign Language, not English. Within some of the psychiatric units, I was able to get interpreters but it would be for a half-hour appointment with the psychiatrist. For the rest of the day I had to adapt and try to understand those around me.'
In hospital Karen would see other patients come and go, responding to treatment quicker than her, and getting back to their lives whereas she was constantly being held back.
Having researched a clinic in south London where all the staff were Deaf and/or could sign, Karen asked a psychiatrist she had been seeing for two years in Dublin if she had noticed any improvement in her condition.
'I was in Blanchardstown involuntarily at the time. She said she hadn't. I said the UK would be better for me. I couldn't go out anywhere. She said: "I will let you go to the UK".'
A six-month wait for funding ensued.
'Imagine every single day I kept asking the doctor any news about funding. It felt like forever. After six months we got funding and within two days I was in London. I liked it from the moment I arrived.'
Greeted by a camera enabling her to sign talk with nurses inside, Karen had found the treatment centre she had been searching for all her life.
'That began my journey of recovery. Arriving at the ward was overwhelming. Psychiatrists, other staff including nurses and fellow patients all signed in British Sign Language. This was exactly what I had been looking for, what I needed: Deaf peers who understand what I am going through; staff who sign and understand how mental health affects Deaf people. It's a place where I no longer felt "Deaf" or "disabled".'
Karen said the word Deaf is capitalised to refer to people who have been Deaf all their lives, or since before they started to learn to talk. 'They are pre-lingually Deaf. It is an important distinction, because Deaf people tend to communicate in sign language as their first language.'
Fortunately Karen already knew British Sign Language and after just a few days in this environment, she found herself opening up about the voices that had been following her around since she was 17.
'Unlike that doctor I told 11 years ago, the psychiatrist understood how mental health disorders affect Deaf people. As a result, within a few weeks of arriving in London, I was diagnosed with schizoaffective disorder. Finally, a diagnosis I could connect with.'
With the stroke of a pen in Dublin the anxiety Karen felt around access to her healthcare was over.
Then while Karen was getting treatment in England for a year the Department came after her, claiming she was on holidays, and put her under more pressure.
'Karen came to me and told me she was worried and I told her to forget about it. That I'd handle it here. Brendan Howlin and George Lawlor were absolutely brilliant,' Sonny said.
Eileen travelled over to see her a few times during her year in the Bluebell clinic in London, and Sonny visited her once, as he had work commitments.
'The hospitals here in Ireland are so completely different. It was more homely and I felt more relaxed and more comfortable because when I met my psychiatrist she didn't need an interpreter.
'When I left London I felt I was ready to move on,' Karen says.
She started Equality Studies in UCD but hasn't been able to finish her course.
'I told the team in London everything that was going on in my head. I still need someone to help me cope with my thoughts as I have special needs and mental health problems. My motto is recovery is possible and I truly believe that.'
She shows me a tattoo of an apostrophe on her ankle.
'Apostrophe tattoos are very popular with young people. They mean my story isn't over yet. It's like recovery. I was in Dublin one day with friends and a shop assistant came over to me in Penney's when she saw it and gave me a hug. She said I am so proud of you. You are a survivor.'
Learning to move on
Karen said her mental health is different to her Mam's.
'I am an open person now. In the past I would have been nervous. Now, fuck it.'
'I am the same,' Eileen says.
'I used to self harm on my left arm for years since my twenties. To stop myself I had my daughters' names tattooed on so I know I'd be cutting them if I cut myself.'
Eileen has not self harmed in decades and is firmly on a road to recovery.
'I have depression and a touch of emotional unstable personality disorder. I've had mental health problems since my early 20s,' Eileen says, adding that she had an incident happen to her in her childhood also involving someone outside her family.
'I was caught up in my own prison of mental health for so many years. There were times that I was so caught up that I didn't notice Karen was having problems and that brought on more stress when something went wrong.'
Eileen organises an annual candlelit vigil for anyone who has been bereaved by suicide, having lost many friends herself to self inflicted death. She also got a looped audio system installed at St Michael's Theatre in New Ross so Deaf people can enjoy shows.
Eileen walks with the shadow of the stigma of mental health every day.
'Everyone knows me as the person with mental health problems.'
Karen said she knows how her mother feels, adding that everyone carries around problems inside.
'When I feel suicidal I don't tell anyone. I pretend to be happy and go out with my friends and might go on a holiday but it builds up and builds up and then bang. I have loads and loads of scars but I will never go to hospital for stitches,' Karen said.
She said when funding ran out for her treatment in London she returned to Ireland a new woman, resolving herself to help other Deaf people in Ireland.
She is starting college next week, studying Business Administration in the National Learning Network and wants to train to be a psychotherapist but isn't ready to begin a course just yet.
'We are absolutely so proud of Karen,' her father says.
'There is nothing like the friends she has. They grew up together and tell each other everything and I think that's a great thing for her. We are lucky we have a strong family unit and Eileen's mother and father.'
On the challenges of fighting mental health problems on several fronts, Sonny said: 'It's been tough and it caused huge pressure on every aspect of our lives. It put pressure on our marriage. We are so lucky me and Eileen survived it. This is something other people are going through but I wouldn't wish it in my worst enemy. Depression is like being in Croke Park surrounded by 82,000 people but only thinking that you are there on your own.
'I work part-time so Eileen did most of it. We all love our three kids and we do whatever we can but there is a limit to what we can manage.'
Karen sees spoken English as her third language, having learned Irish and UK sign. She also learned American sign.
She still sees a private UK-based Deaf psychiatrist once every four to six weeks.
'I pay €250 a month for that myself. I feel like the Government has failed me because there are no services for Deaf people with mental health. Psychiatrists didn't listen to me. All I got was more and more meds.'
She still hears a voice sometimes and has a ways to go before she feels ready to take on a big challenge like a career, but is making the most of her good days.
'I still hear voices to this today. It was like a female voice. I don't hear it anymore but I feel a presence; like it's there watching me and reading my mind and following me from time to time.'
'We love you chick,' Sonny says. 'We are after going through hell,' he says, reaching his hand out towards his daughter.
'We want to help other people,' Karen says.
Karen stopped self harming two years ago.
'I stopped about two years ago. That is the first time since I was a teenager that I haven't cut myself for so long. The reason is I found the right person in the UK.'
She sees a private Deaf psychotherapist once a week through UK-based Deaf4Deaf on Zoom as there is no Deaf psychotherapy in Ireland. 'She is Deaf as well. We know that has helped me a lot.'
Karen featured in four Royal Association For Deaf People videos - which she posted to her Facebook page during Irish Mental Health Awareness Week - talking openly and bravely about her condition and has received a massive response ever since.
'In Ireland Deaf people are twice as likely to suffer from mental health because a lot of older people would be very poorly educated as there wasn't the awareness around Deafness before. In class their hands were tied behind their backs and they were forced to talk. This is why I share my story of my mental health today. I have gotten so many private messages from Deaf people of all ages in Ireland since my videos went up online last week.'
Since early spring funding has been approved for another psychiatrist for Deaf people in Ireland, but Karen said resourcing of Deaf people's mental health supports remains a token effort.
'Imagine if they have to meet one person in crisis twice a week. How can they have that time, it's impossible.'
In 2017 she was delighted to see the Recognition of Irish Sign Language for the Deaf Community Bill passed into legislation. She feels this is a step in the right direction in recognising Deaf people in Ireland.
'I want my story to be shared with the people who have special needs and who have communication problems or are Deaf because it's nothing to be embarrassed about in the 21st century. I want to break the stigma forever.'
If you have been affected by this story the following free mental health and information supports are available to you:
Chime Waterford: Tel: 051 855777 or 085 8060911. Skype: Chime Waterford. Text: 085 806 0911 www.chime.ie
OneinFour for adult survivors of child sexual abuse: 01 6624070; Email: firstname.lastname@example.org
Pieta House 24-hour Helpline: 1800 247247 or Text HELP to 51444
Samaritans 24-hour Helpline: 116 123.
Sign Health: www.signhealth.org.uk
RAD Live Chat: www.royaldeaf.org.uk
SHOUT Crisis Text Service: www.signhealth.org.uk/with-deaf-people/crisis-text-service