Who Cares About HIV?

Challenging Attitudes and Pastoral Practices that Do More Harm than Good

Paul Kybird, Joseph Kyusho-Ford

• Publisher: SPCK Publishing
• Year: 2019
• ISBN:
  9780281082438
• Topic: Theology & Religion
• Subtopic: Religion

This timely book gives a voice to those living with HIV who are too often ignored or misunderstood by the Church and other religious institutions - including those in positions of care who may have thought they were helping but have ended up doing more harm than good.The book exposes and challenges attitudes of institutional blindness and abuse and suggests some positive means of remedy, all of which have been formed and tested with the help of clients at the London HIV Chaplaincy. With its powerful combination of moving personal testimony and honest pastoral reflection, this book will encourage a more informed, sensitive and effective interaction with many who, for whatever reason, feel marginalised by our society and alienated by those who most want to help. As Rowan Williams says in his foreword, 'This book is a proclaiming of the gospel as well as a call to judgement. It is necessary material for the self-examination and self-awareness of any Christian minister or community, if the Church's claim to be what it is supposed to be is not to go on being so hollow for so many who need to hear that their agency and dignity are understood and honoured.'

Ninth testimony
In conversation with the chaplain

Our chaplain has been in post for almost a decade. His voice serves to articulate the testimony of the clients. His anguish and compassion shape the challenge he puts to the Church.

It seems to me that the pastoral approach you adopt in the chaplaincy is of supreme importance to your work.

We deal with whole people, with real lives and with burning issues. This is our starting point, and really this is what is of supreme import­ance. Any pastoral approach we have developed has been in response to encounters with our clients. We refuse to view the clients as objects of pity or as helpless ‘victims’ . We have learned from the clients themselves that they are determined to be listened to on their own terms. This has demanded discipline and self-emptying on our part. The best word I can find for this approach is ‘attunement’ .

So how is such ‘attunement’ achieved?

A major obstacle with any pastoral approach is to go in with a narrative and set of answers already in place. We had to drop any preconceived notions, categories and judgements (even theological ones). Our clients live extremely complex lives, and we have had to develop a way of relating to them that is open and two-way.

The foundation had to be to find a medium that would enable free exchange of information. The only way to do this was to accept the forms and definitions that the clients themselves gave to their own experiences without trying to ‘solve’ or undermine them. We had to drop any notion that we knew them better than they knew themselves. Clients refused to be managed, patronized or pathologized.

Next, we needed to establish a bedrock of trust. This involved allowing the clients to retain their right to control how much personal information they shared with us at any one time. Many clients do not even communicate their personal information to their employers, families, partners or friends. That they would hand us every bit of personal information to write on forms beggars belief when I look back. If we had not learned to accept information slowly as we earned their trust, there would quite simply have been no chaplaincy. Clients (like every one of us) are bombarded with demands for information all the time. There is no good reason why they should sign up for more of the same from us.

Surely this makes for constraints on your work as a charity – the raising of funds, the management of records, the attraction of donors, the assurance that their money is being well spent?

Our primary goal has always been to defend the clients from being ‘commodified’ . When clients’ information or postcodes are traded for funding, the clients feel resentful or betrayed. This has certainly made my job, and that of the trustees, much more complicated. However, we try to balance protecting our clients’ anonymity by acting as ‘interpreters’ to possible funders. It is not that we do not believe in accountability or outcomes. Far from it. It is simply that we believe in the need for these standards not to be imposed from the outside or to be experienced as intrusive. The specific situations of the clients are paramount. Any intrusion of a ‘managerial’ approach into pastoral work must retain that flexibility at the very least.

It sounds as if you have an approach that is simply compassionate?

Absolutely not! ‘Compassion’ is a seriously misused word. The ‘com­passionate approach’ so often seems to end in what Martin Seligman calls ‘learned helplessness’ .2 Clients end up being reduced to hand-holding and being supine in order to qualify for help. More than once when trying to discuss my work, I have unfortunately been faced with comments like, ‘I do not need to hear what your clients have to say; I only need to love them.’ The frustration this elicits in clients is huge. More importantly, it is an approach that ends without empowerment, integration or identified goals for the clients. When those engaged in pastoral care claim compassion as their private constituency, we can end up looking like emotional vampires gorging on human misery. This approach all too often looks like the strong helping out the weak (and incidentally means we have nothing to learn from our clients).

In this regard, I would like to refer again to my experience of trying to discuss my work with people engaged in pastoral work. On more than one occasion I have been met with statements that consist of ‘people come to us and we decide what they need’, or even that ‘the purpose of pastoral work is to prove our faith is true’ .

Either way, the result for the client as an object of care is the same.

So how have you handled that?

We have allowed clients to be upfront about the deep frustrations they have faced in the expression of their stories, in two ways. First, we learned to listen to all the ways in which clients expressed themselves. It was (metaphorically) like trying to learn many languages at once. Second, we have made it a primary goal to take all of this material and feed it back into the reflections of faith communities.

Spell that out for me.

Gladly. You will forgive me if I go on at some length about this, but it really is the heart of the matter.

Going back to the metaphor of learning several languages at once, we can glimpse the complexity of the means the clients use to express themselves.

• Questioning They have asked faith communities very direct questions about dicey issues such as sexuality and gender. They have done so with sincerity and openness, but certainly with a desire for answers that make sense. They have bothered to explore inconsistencies and cultural constructions surrounding these issues, or past cruelties around these matters perpetrated by faith commun­ities. They are extremely well informed, and often very blunt. Their questioning has most often been met with aggression.
• Emotions Clients have expressed themselves with very strong emotions indeed. If we had in any way pathologized or protected ourselves from these we would quite simply have missed the points the clients were making. The pain and anger expressed by the clients is often towards wrongs endured. Their passion and enthusiasm is what motivates them. Also, they express anxiety as a genuine ‘existential angst’ about the meaning of the situation they find themselves in. This can lead to them pointing out the inadequacies of the religious answers they are offered. If we dodge these by seeing our job as offering a ‘happy ending’, we again miss the point.
• Reimagination Clients have sought to express their experiences in symbolic representations. This has been very difficult for them, as liminal figures don’t figure highly in mainstream presentations of faith. Women clients are by far the best at this. They seek out the marginal, strong women of the Hebrew and Christian scriptural heritage that presents women as unfairly judged by men, or who were stronger than ‘foolish’ men. Gay men experience far more difficulty in this area because the images and symbols from across the major traditions simply do not permit such reimaginings. We have had to learn to interpret and decode what clients are getting at when they resort to literature, mythology, humour, music and so on. It required a great deal of patience for us to learn to be open to the way clients were expressing fundamentally religious themes in this way. It would be easy to be dismissive or to engage in ridicule of clients when they use this material, or to be self-defensive. One example will do: when a client used a picture from the internet to laugh at an inconsistency from one faith community about ‘cross-dressers’, they were met with a sour-faced comment about the internet being ‘a strange place’, as if religious communities cannot be so at times. In any case, a small amount of patience would have got to the point the client was trying to make. Incidentally, it does us no harm to laugh at ourselves. Humour has been a major cause of clients experiencing distancing or aggression from faith communities. It seems we all take ourselves far too seriously.
• Isolation Most religious communities place a very high premium on membership, so those who keep their distance as a protest face harsh judgement. Most of our clients, being people of intense faith, keep a profound distance between themselves and faith commun­ities. Partly this is because a major price of inclusion seems to consist of silence and ‘not rocking the boat’ . Clients have been offered inclusion at the cost of expressing the very issues that power their search for meaning in the first place. However, examination of the motives for isolation can provide communities with rich resources for reflection.
• Rebellion Clients’ lives are messy and they are littered with loud behaviours and acts of protest around health and sexuality. Most often these elicit moralizing and judgementalism. But we have found, without in any way valorizing these actions, that at the root of them all is often a kind of ‘holy foolishness’ . If we but have eyes to see, then we have much to learn.
• Instability All our clients are people whose expressions of uncertainty change according to their communities of origin. Quite simply (as a Buddhist lama friend of mine expressed it), ‘The lines on the road run right through them.’ Because of this they have had to be professional ‘wanderers’ of a spiritual nature. This is mainly because they were initially pushed out, but also because their passionate search for meaning has led them to measure different responses and answers to the problems of life. This is simply an expression of the collapse of a metanarrative. Nowadays every city is home to many religious communities. They do not all agree and there is no safe space for any faith not to engage with the issues raised. The clients live this and present it to communities who far too often stigmatize it as ‘instability’ . But the grand narrative has dissolved and, with it, the sense of privilege any faith community wants to claim. The clients have a comparative knowledge of various faiths, which is frankly challenging, and they have an expressed existential anxiety that comes from knowing that all communities have at one time or another been implicated in marginalization and exclusion, or, again to quote my lama friend, ‘They are aware all too well of the uses and abuses of religion.’ Frankly, this issue only adds to the clients’ uncertainty. It requires huge maturity and wisdom from faith communities to negotiate this in pastoral care for the simple reason that clients know that not all answers are the same. At its best, this can raise pastoral care above mere apologetics; all too often, however, this aspect of the clients’ experience is resented.
• ‘Ordinary people’ syndrome I have saved what I personally believe to be the worst till last. Any GP will tell you that a patient who has to live with a chronic condition will be among the best informed of their patients, because they will research it. However, those engaging in pastoral care seem to believe that if an experi­ence or idea has not occurred to us, then how can the mere ‘ordinary’ people we care for have thought about it? Sadly, I have even encountered this among our own trustees. Our clients have had to amass a vast array of skills in order to negotiate the difficulties of their lives and faith journeys. To patronize them simply because we have not seen the need to think or change our ways is catastrophic, and is another expression of the way we distribute power unevenly in pastoral relationships.

I have used the word ‘attunement’ rather than ‘listening’ when trying to explore this matter, because this process is like trying to hear someone playing an instrument. It requires more than just therapy skills or intellectual skills, or having done a course. It requires what the clients say to resonate in our viscera. We have got to feel it.

It sounds as though this urgently needs to be fed into the Church’s understanding of the nature of pastoral ministry.

One of the greatest expressed desires of the clients has been to see their stories fed back into the ongoing reflections of the commu­nities who offer care to those living with HIV. Their motivation is care. They want to embed the awareness of these issues deeply as a resource for growth so that others will receive better support. It is vital for pastoral and theological training that we do not espouse grand theories that ignore exceptions to the rule. If I might steal a quote from Rabbi Lord Jonathan Sacks, ‘God is in the details.’3

Meanwhile, our clients are viewed as anomalous. By our standards, they should not be sustained so deeply by their faith, yet they are. Faith communities need to understand how.

At this point it seems that pastoral care and theological principles are coming together, and in a way that is far from simple given the different faith journeys of the individual clients.

In a real sense you have put your finger on the most fundamental problem we experienced when undertaking this work. How could we express this work in principles that didn’t immediately cloud the issue with rancour or sectarianism, because our clients come from many different religious faiths?

This is the reason why we have rooted what we have fed back to religious communities solely in the clients’ human experiences as a starting point for different communities to engage in dialogue with clients. We have the principle of the human being seen theologically.

However, if you were to push me on this, there are two images I would use to express our theological starting point. The first is expressed in another quote from Rabbi Jonathan Sacks: ‘God does not rule slaves, God relates to those who were slaves and who have been set free.’4 I use this to highlight that we can only be of service to the growth and well-being of clients when they are implicated in their own growth.

The second image would be expressed in this quote from the Orthodox Christian nun Saint Maria of Paris:

If someone turns with his spiritual world towards the spiritual world of another person he encounters a mystery. He comes in contact with the true image of God in Man, with the very icon of God incarnate in the world, with a reflection of the mystery of God’s incarnation and Divine manhood and he needs to accept this awesome revelation unconditionally.5

I use these quotes in no way confessionally, nor are they the only appropriate ones. H...