9th Annual Céifin Conference Freedom: Licence or Liberty? Engaging in a transforming Ireland

Alice Leahy, Director and Co-Founder Trust

I would like to thank the organisers for inviting me to address the gathering here in this special part of the country on a topic that is so apt at a time when many of us are asking fundamental questions about the world and how Ireland is changing so rapidly and how we can seek to make this a truly inclusive society. Indeed, despite all of the dramatic change we have witnessed it is disturbing how undervalued human contact and genuine caring for others has become. We have got rid of the work houses, the orphanages, and even the psychiatric hospitals, as one senior civil servant said to me recently, leaving only the prison as the last refuge for many of those who are vulnerable and cannot cope and whose difficulties are only criminalised because there is no where else to send them. You will appreciate with that brief introduction why I am very happy to speak about “wasting time with people!”

I grew up under the shadow of Slievenamon in South Tipperary, part of a small family in a close knit community – and everyday we remembered our Aunts and Uncles forced to go abroad to work in the U.K., U.S., Australia and New Zealand – some of whom who also choose the religious life. Memories of cycling miles to see Tipp and Cork play in the Munster Final, my grandfather forecasting the weather from the colours and shadows on Slievenamon, and my grandmother singing “I dreamt I dwelt in marble halls ” as she crocheted. Work, debates, reading, environment awareness projects and others, recycling, drama, picking fruit and veg for Country Markets (of which my mother is the remaining founding member of the first branch in Ireland on Slievenamon) visiting old and sick neighbours, some in the County home, ensured I was a very active citizen and was aware of the value of social capital before the term was coined. My adopted home introduced me to the slums of Dublin especially while working as a midwife in the Rotunda. All of this sowed the seeds of what I do now in a dramatically changed Ireland.

One of the most important things we make for those we see everyday in TRUST is time, time to treat them as human beings. Time to treat people properly is the one thing that is increasingly difficult in the modern Ireland where we are all statistics reduced to a quantitative or monetary value. In a world, which is increasingly governed by performance indicators and benchmarks, based on these quantitative measures is it possible to preserve even the concept of a philosophy of inclusitivity, which means fundamentally treating people as people and as equals?

This means that the focus on people is being lost even as more resources are being deployed because it becomes almost impossible to advocate for a philosophy of inclusitivity and caring when we distance ourselves from people, aided by technology, voicemails, emails etc. and a flawed consultative process – all seemingly designed to keep people at a distance.

But how can we ensure that people are treated as people? This is the most basic human right – the right to be treated as a human being and not a statistic, as the award winning South African Satirist Pieter Dirk-Uys said so eloquently to me when I met him some years back.

Another African voice was quoted not too long ago in an article in the BMJ (British Medical Journal) by Simon Challand, a Medical Adviser working in Uganda, referring to the advice an African Bishop had given him with a smile -” “Waste time with people”… You Europeans are always concerned about projects and budgets. The African does not worry about them -just waste time with people”..He gave me this advice in 1996 shortly before I came out to work in Uganda. Since then his words have kept coming back to me, and I reflect on their truth and wisdom and how difficult it has been for me, as someone with European values and attitudes, to apply them.” However, what those so far removed from the frontline in the development and planning of our health, social and homeless services fail to understand is that you cannot really listen to people without taking time to do so. Time is much more productive in the long-term because by listening to people today they will not become isolated, disillusioned and made to feel worthless. Listening to people means we can help them avoid the misery of despair and exclusion in a “democratic” society.

Let me describe our daily work in Trust which was founded in 1975 which grew out of research I carried out in night shelters with a group of doctors working in a voluntary capacity. That work, and the generosity of the late Ann Rush, led to the foundation of TRUST – a private charitable trust and our aims are:

“to serve homeless people in need by promoting human services which would meet their immediate and long-term needs and by these means to encourage their development and give their lives a dignity which is their birthright.” (…from the Deeds of TRUST.)

The service we set up was first of its type, and has been used as a model for services here and overseas. We are sandwiched between St. Patrick’s Cathedral and Christchurch Cathedral in the Liberties area of Dublin. We work in the basement of the Iveagh Hostel and are grateful to the Iveagh Trust who only charge us a nominal rent.

The philosophy of TRUST is based on two central principles:

  • The recognition of every individual’s right to be treated as an autonomous and unique human being.
  • The need to restore the dignity of individuals whom society has labelled deviant and undesirable.

Everyday we meet over 50 men and women who sleep rough and meet with people as they present themselves to us – all outsiders in a city of plenty. Many come from outside the city, some from the remotest parts of rural Ireland, some returning to the land of their birth to be buried in the “old sod” and many from outside the jurisdiction, with increasing numbers from the EU Accession States. Some people we meet we have grown older with, meeting them first in the early 70’s – and of course we meet new people every day. We employ two nurses and provide a medical service, advice and dressings – sometimes it looks like a casualty department as many people we work with will not go to A&E, and if they do go they will not wait. As part of a holistic service we provide bath and shower facilities, a complete set of clothes and information on rights and entitlements. We seek to treat them as people recognising that they need help and have rights, especially their right to privacy, in the way that we approach them so that in coming to TRUST they can feel secure and are hopefully able to trust us. Hospitality is important – we provide tea and coffee as we would welcome visitors to our own home.

The people we meet are perceived by the wider society as being different and difficult. They suffer from the effects of isolation, neglect and health problems, exacerbated by what are often described as chaotic lifestyles. Accessing mainstream services – particularly basic accommodation is a major problem. We meet increasing numbers of people who were ‘re-settled’ in totally unsuitable accommodation, and then find themselves homeless again.
I meet people homeless in Dublin whose heartbeat I listened to while working as a midwife in the Rotunda and consider it a sad reflection on our society that we are now meeting 2nd and 3rd generation homeless.

The people we meet everyday present with a wide range of medical problems including bodies that are ravaged by disease and violence, some with pressure sores from sleeping out in all weathers, sometimes sleeping in urine soaked clothes for weeks; infected and untreated minor skin conditions and major skin problems e.g. leg ulcers and gangrene; as well as lice infected heads and scabies. In addition we often meet people who are suffering from malnutrition and all of the medical conditions common to the general public but exacerbated by their living conditions. We are now coming across conditions long disappeared since the advent of good food e.g. trench foot and impetigo (wild fire) – conditions clearly associated with extreme poverty.

Some people we meet cope with very serious addiction problems, including drugs, alcohol and gambling, suffering from despair and the pain of loneliness, pushed from service to service, often unable to get relief for minds at breaking point and the only solution offered is a brown envelope of medication and often unable to read the directions.

Many people we meet struggle to create a sense of normality after years locked away in institutions and others who have been relocated from one institution to another. And some who are locked in prisons they have created for themselves, often out of the frustration of not being understood or ignored – of course as Bob Dylan once said “we are all prisoners in the mystery of the world”. Many people we know have attempted suicide, and many have died on the streets.

We meet some people who are so cut off from everything around them that they at times appear to be beyond reach. Others however challenge and inspire us everyday to look at the way we all live our lives.

People coming from the E.U. Accession States are not all coping well – not unlike our own people who went to England and America out of necessity and not all of whom were successful. Jaroslav, a Polish man in his 40’s, arrived in Ireland almost 2 years ago. He lived in a hostel for a few months and got a job which he lost later. He never got the money owed to him so he could not pay for a hostel bed. He has poor English. He has an 18 year old son and an 11 year old daughter. He phoned them last on June 1st – Children’s Day in Poland. It costs money to phone. Going home to Poland isn’t an option, there is no work for him there and he likes Ireland. I met Jaroslav on the day of the Dublin Mayo match, he was excited as he set off to watch it in a shop window. When he arrived in on the following Monday I asked him what he thought of the match and he said “you crazy football”, to which I replied “you should see the hurling”!

Sometimes the only hearing the people we meet ever get is when they are being researched – an issue we have grave reservations about because of the quality and quantity of research taking place today as well as the time and money spent on “evaluating outcomes and cost effectiveness” while ultimately making no difference to the lives of those who have been examined in the course of these expensive research exercises.

Some people who are homeless, poor, or just different feel pressurised to take part in research into homelessness in case they lose their hostel bed or their entitlements. We only become involved in research, when we believe the research design is sound, ethical and likely to provide useful information and would be concerned about the sharing and storage of confidential information without due regard to the rights of our fellow human beings.

“Tracking People” has become a much abused word and is currently seen as best practice. Tracking people through the system smacks of Big Brother as more and more vulnerable people are forced to trade personal information to get a very basic service.

The most recent “common assessment tool” based on one designed outside our jurisdiction will be “rolled out” shortly – a huge intrusive document where data will be computer stored and I guess shared – this is of great concern to me and my colleagues.

This is of course fundamentally about human rights in the sense of respecting people as people and refusing to see them as mere statistics to be measured and researched like inanimate objects.

Of course research is essential to plan services. “If we are to push for fundamental change in the whole area of homelessness, then a certain amount of constructive research is necessary. We feel strongly however that it must be pursued with the greatest caution. It is clear to us that the ‘research industry’ uses that section of our society, which is the most vulnerable and the least able to battle for its rights as its’ source of material. We must never forget that we are working with human beings, who for the most part have been battered by our society and who for so long have been pushed about as just another number in a cold inhuman bureaucracy”.

This last quote is from Leahy and Magee – Report on Broad Medical Services for Single Homeless People in the City of Dublin – March 7th 1976 – 30 years later, in a new millennium -what has changed?

Our frontline service providing care to the most disadvantaged people in Dublin over a long period has given us some unique insights into the way in which the services, voluntary and statutory, operate in Ireland and beyond and of course we all view the world from where we stand.

“To be without a home is to be suspect. The homeless are easy targets. Their bodily integrity is constantly at risk. Their lives are an offence against the sacred canons of private property and consumerism. Their privacy is regularly intruded on as part of the price of being statistics in the poverty industry; their painful experiences are reduced to sociological research data. The true test of a civilised community is how people at the margins are treated. Not only must individual liberties be defended, but society should be educated and sensitised towards a broader vision of life and living.” – Dan Sullivan, then President of the Irish Council for Civil Liberties, describing what it means to be homeless in Ireland in a piece I asked him to write in 1995.

That compelling piece is as valid today in a new Century. The unchanging nature of life for the outsider in Irish society also inspired us to launch Building Trust in the Community, an initiative to build on the work we have sought to do in recent years to change attitudes and encourage more people to become advocates for the outsider.

Until those in positions of power and influence are prepared to sit with people in their misery and poverty, feel their pain, smell the smell of human misery and waste, feel the trembling body and listen to the cries of frustration and at times hear challenging ideas or words of wisdom, rather than looking at statistics in neat boxes with grandiose titles nothing will change. They should not allow jargon to take over and should be prepared to question rather than using reports to further distance themselves from people, or just support entrenched ideas they may already have. If they cannot or will not do that a growing number will continue to suffer pain, often the pain of not being listened to and those of us meeting with them are left with the feeling we are only adding to their misery through our silence. Indeed many people including those in Church, State and Community groups who work hard in building and fostering community involvement are also beginning to feel disenfranchised by an increasingly insensitive bureaucracy and meaningless jargon.

In July this year a bulletin sent to the staff of the HSE by email from “internal comms” included a job description for the newly created position of Head of Process and Operations which states that this will “involve executive leadership of cross-pillar operational and process change, sponsorship of process developing projects and the cascading of process excellence throughout the HSE”. This was later referred to in the letters page of the Irish Times 24/07/06. I shall repeat this and just ask you do you know what this means? Can such an appointee, if such a person exists, understand what I am saying or more importantly even understand those charged with the responsibility of dealing “hands on” with people.

A gap is developing between the bureaucrats and those in front line care that is becoming wider, and those who suffer most through the refusal or inability of those running the services to listen and “waste time with people”, are the most vulnerable – the very people the services were set up to help such as Joe.

Joe – known to us for 20 years from rural Ireland was born a few months after the Easter Rising, living to a great age of ninety this month. He worked all his life, paid his way in a workman’s hostel in Dublin after years in the U.K. He remained single, he walked miles until quite recently until “the pains” curtailed his independence.

He never longed to go back to the mid western area he came from as he preferred city life. He liked to visit the local pub, have a chat, watch the races, (the smoking ban put a limit to his perhaps only social encounters outside the hostel where he lived.) He dressed well, keeping his only suit hanging in the wardrobe and his shoes polished. He wanted to live his life independently for as long as he could. As the twinkle in his eye dulled and the pains altered his gait, making him almost completely bent over and ultimately led him to decide to move to a nursing home some months ago. He had promised me he would let us know when he felt he should and we promised to help him. I shudder to think how he would have coped with the process of negotiating with a cold, insensitive and often very incompetent bureaucracy as this case will illustrate.

A bed was available in the home where some former residents of the hostel he called home had settled. We knew it as a warm, caring environment where the matron and a voluntary committee ensured the best quality care was provided in a friendly setting. He visited the place, was assessed by the medical personnel and was accepted. To enable his transfer some procedures were required, including subvention. This process can be fast-tracked – we were assured as his health continued to fail and our concerns increased.

Geraldine McAuliffe, Deputy Director of TRUST, my colleague, worked constantly for three weeks without success to secure nursing home subvention, and described the experience as soul destroying and unbelievable in terms of the heartless attitude of the staff in the bureaucracy of the health services charged with helping to facilitate access to care. The endless calls that went unanswered and the messages that were not passed on, serve to underline just how bad things have become and why those who have no one to speak up for them have absolutely no hope!

A nursing home bed for the man was secured but the nursing home could not let him have it until the subvention was sanctioned by the HSE.

Following several phone calls to the relevant staff and being left holding, listening to an interminable jingle for long periods during those phone calls, Geraldine eventually secured a commitment. However, it was subject to the condition that the man was examined and confirmed as suitable by a Geriatrician – which would have taken months as there is a long waiting list to obtain such an examination.

This required many more calls until the HSE conceded that he could be examined by a Public Health Nurse. However, when the local PHN was contacted she insisted he had to be examined by the Public Health Nurse attached to his GP’s practice. The PHN in the practice agreed to do it on the last day before she went on holidays if the forms could be faxed to her and asked if he qualified for subvention. After hours on the phone Geraldine secured a commitment that the forms would be urgently faxed to the practise. When she checked, assuming everything had gone according to plan, she discovered that the fax arrived four days late!

In the meantime, because of the delay in securing the subvention the bed in the nursing home had to be given to some one else. This means that Joe has spent the last six weeks in an acute hospital bed. Therefore, when you hear about bed shortages in our hospitals in many instances it is due to an excessive zeal on the part of those running the services in seeking to ensure the regulations are enforced to the letter, regardless of the human cost which is unquantifiable. However, you will also hopefully appreciate that if there was more human concern for the plight of this vulnerable elderly man the HSE would have freed up an acute bed and allowed him to find some sense of home in the nursing home where many of his friends from the hostel are also cared for. It is clear that the training of personnel requires much more than just filling in forms.

Freedom, liberty and indeed choice should be basic rights in a wealthy transforming Ireland! However, as Joe’s experience illustrates things are getting worse rather than better for the most vulnerable in some situations.

Tom who looks seventy but is only in his mid fifties lives in Dublin 4. One day a week, before 8.00am he makes his way to Trust, along Patrick Kavanagh’s well worn path along Baggot Street, Stephen’s Green, and Grafton Street. He carries a large ESB golf umbrella which he got in Trust and carries all of his earthly possessions in a small plastic bag. He likes this time of year, the dark evenings mean he can go to bed early – his home is under the bushes in a park.

Recently a Welfare Officer, decided that his money, a meagre €165.00 a week (try living on it) should be stopped because he refused to move into a hostel. His medical card had run out and his doctor hadn’t signed a disability form even though he was not disabled! The Welfare Officer told me it was a ministerial order and that was that! Is this about playing about with numbers.

This highlights in quite compelling terms why people with no voice rely so much on anyone they can find to intercede on their behalf with the bureaucracy. From TD.s and Senators and local public representatives to local groups in the community all of whom should not of course have to play a role in softening the impact of an apparently heartless system, often more interested in enforcing the letter of the law instead of seeking to make certain that the rights of the citizen to a service is made easy to obtain. In that regard anyone who listens even occasionally to the Joe Duffy Show will understand what I am talking about and the vital importance the media also plays in informing people of their rights and protecting them.

Legislation too can impact on the lives of people who should be able to relax in the autumn of their lives. How many for example are aware that VAT is charged on care in the community. Many do not have the freedom to live out their days in their own homes. Indeed many live in fear in their own homes because of crime, breakdown of neighbourhood values and the closure of rural Garda stations. Some facilities for people are not available countrywide, like access to free travel and free chiropody for the elderly, to mention just two – both of which would help people to enjoy freedom of movement and access to social activities. Many older people experience real poverty because they feel they must save money for their funeral rather than enjoy a little luxury. The impact of the closure of some rural post offices, rather like the closure of small hospitals in Dublin has never been properly assessed. How often services put in place can further isolate and label people rather than enhancing the enormous value of socialisation.

We must be acutely aware of the social determinants of health and be prepared to discuss them and stop intimidating those who speak out and forcing them to remain silent and conform. Mary Robinson, former President of our country, said in 2001 “Each time you speak out with a critical voice you pay a price”. On the other hand, if we are honest, we don’t encourage people to speak out as the lack of proper whistle blower legislation especially in the health and social services clearly shows. Last week I listened to Mary – a wonderful ambassador of our country who exudes passion for Human Rights and encourages all to speak out fearlessly.

Caring for people as citizens does require us to speak out if we feel people are being denied care and liberty. If anyone is not being treated with dignity or worse still being excluded from society or our world we have a big responsibility to be their voice. We also need to care for each other and defend those who speak out or nothing will change. Care to my mind is about concern, about defending a person’s most basic right and we should be careful when using words like “caring community” unless we respect everyone’s rights as the mark of a truly caring society is one that respects everyone in equal measure.

I reflect often on the words of Pastor Martin Niemoellen in 1945 – “First they came for the Communists, but I was not a Communist so I did not speak out. Then they came for the Socialists and Trade Unionists. I was neither so I did not speak out. Then they came for the Jews, but I was not a Jew so I did not speak out and when they came for me there was no one left to speak for me”.

A Christmas morning a few years ago I happened to catch Eurovision Mass from Circus Pinter Top in Paris. Apart from the charm and artistry of Parisians I was struck by a few quotes from the Pastor: “Encounters with people move us” and I am sure our isolation in offices at times does something to us too and he further said “It is the blind application of the law which makes us inhuman”. I suggest much of what is presented we accept blindly and perhaps knowing the cost of speaking out we remain silent and of course that silence helps to build the walls that make outsiders of the most vulnerable and also those brave enough to speak out.

Why? As a society we profess we are committed to human rights and guaranteeing everyone’s rights is supposed to be important. However, as I can see everyday with the people I work for their rights are not respected and on a day to day basis, as I have already described, they are humiliated and must endure the almost casual denial of their human rights as I hope you will have appreciated from the cases I have quoted today. However, we do not describe the poor treatment of the voiceless and the most vulnerable in our society as human rights abuses. Of course we use words and phrases like denying their human dignity and rarely even mention their rights. Somehow their disgraceful treatment is not serious enough to be considered as a denial of their human rights.

However, Article 1 of the Universal Declaration of Human Rights states that “all human beings are born free and equal in dignity and rights”. From what I have described today I hope you will appreciate that many of the people I meet everyday are victims of human rights abuses though many would not dream of even suggesting such is even possible in Ireland so blinded have they become by the propaganda and PR spinning emanating from the insensitive bureaucracy with such awesome power over their lives. However, by looking at the conditions and the way in which those who are marginalised in our society — from those who are homeless on the street to elderly people unable to care for themselves — and by asking are their human rights being protected and respected we can bring about radical change.

For thirty years TRUST has been involved in advocacy work – trying to be a voice for the voiceless – as well as providing health and social services. Today through the development of human rights based approaches – which can be developed into a potential management philosophy in the health, social and homeless services – we have the potential to transform the way the most vulnerable are treated. However, it is vital that everyone becomes involved and it is not seen as a legalistic formula of how to deal with people but as the right way to treat people and each other. The example I used of the official stopping a vulnerable homeless man’s disability cheque without any sense of his rights in that situation is a classic example of how and why human rights education must be extended to all officials in the services and it should not just be seen as an exclusively legal or academic exercise.

If we want a caring and respectful bureaucracy managing our health, social and homeless services that places respect for the dignity of every individual at the very centre of its operations we now know how to achieve that in a manageable and measurable way by adopting human rights based management approaches.

Some years ago I met in the RCSI Phil Barker, former Professor of Psychiatric Nursing, who runs workshops on the premise that “Knowledge can only be gained through experience”. I once wrote to him for permission to use a quote and he replied: “Alice, people don’t remember what you say or what you do. They will remember how you made them feel” – this excellent advice comes to mind daily.

Oscar Wilde also said something that is probably more true of today’s Ireland as our values have become much more materialistic:
“we know the price of everything and the value of nothing”.

Only by “wasting time with people” will society ensure there are no outsiders and that all can participate fully in the transformation of what is increasingly seen by many as a State loosing its way.

Time is a priceless product and in our rush to develop services or copy other nations we find it increasingly difficult to accept this fact, because of this inability we miss out on the values that make for good citizenship and inclusitivity. In our rush to be seen as a great nation are we forgetting we are an Island race with a long chequered history and a treasured culture and huge talent. We should now have the confidence to reflect on some of the wisdom from the past from rural and urban communities – not confining the debate to academic circles and visiting experts – we should not be afraid to pose awkward questions. I share the views expressed by John Boorman, the acclaimed 73 year old film director whose film “The Tigers Tail” released this week was interesting – “the dynamics and prosperity are invigorating” though he was rightly concerned about the “social and emotional consequences”.

Everyone in their own way needs to consider where they stand and what kind of community they want. The power to change things is in our hands.