Last month, I took part in a research meeting in Cape Town, spending a week planning a disability research project with colleagues from Kenya and Sierra Leone and Uganda and Zambia. I’d never been to South Africa before. Cape Town is such a beautiful city, with Table Mountain, and the Botanical Gardens, and the Cape of Good Hope. But then always out there in the bay is Robben Island, and over there are the Cape Flats, and here is the District Six Museum, all memorials to Apartheid.
On the Sunday morning, I took the first boat to Robben Island. We got into a bus and were driven around, seeing the church, and the village, and the lime quarry where Nelson Mandela and his comrades toiled in the sun, and where the dust so damaged their eyes. But the highlight of our tour was to be taken around the cell block. Our guide was a former political prisoner called Tom Moses, who calmly and patiently explained to us about the brutalities of the regime, as he gently pushed my wheelchair along the rough corridors. We stopped at Mandela’s cell, left exactly as the day he walked free from prison. Tom explained about the cold floor, and the thin blankets, and the poor food, and the toilet bucket which was emptied once a day. He spoke of how difficult it was when the political prisoners heard Nelson Mandela saying that they now had to forgive their gaolers.
I’ve read Mandela’s autobiography. As a student, I was active in the Anti-Apartheid movement in the 1980s, demonstrating in Trafalgar Square and singing anti-apartheid songs at sit-ins of the Cambridge branch of Barclays Bank. I’ve even met exiles and campaigners in the struggle. But before my visit to Robben Island, I knew nothing of apartheid. It was profoundly moving to be in that notorious gaol, talking to someone who had been imprisoned there for years. Tom Moses, who’d experienced it first hand, made it real.
The encounter reminded me of when I’d been chosen to read a statement on behalf of the disabled victims of the Nazi euthanasia programme, at the 27th January National Holocaust Memorial Day ceremony , the year when it was held in Newcastle. The process of devising and approving the text was rather involved. The final straw was being instructed to report at the theatre at 845am on a Sunday morning, in preparation for a ceremony that was being held at 4pm that afternoon. As I sat in the Green Room feeling bored and irritable, an old man came in and sat quietly on a chair. We began talking. He called himself Harry, he was a retired builder, he was in his eighties, and his accent was an odd melange of Geordie and Polish. Without any prompting he began to tell me his life story. He had come to Britain in 1946. By chance, he had ended up in Newcastle, and done well for himself in the construction trade. He had married a local lady, and ended up with many children and grandchildren.
But his real name was Chaim Nagelsztajn. He had been born near Lublin in Poland and his father Shlomo had been a builder. Chaim had been fourteen when the Nazis came to take his people away in 1942. When they arrived at their village, his family had hidden. The others had been discovered and killed. Eventually, shortage of food forced him to emerge from hiding, and he joined a detachment of young Jewish men who the Germans used as labour. Their first task was to dig mass graves for the bodies of their families and friends.
When the work ran out, Chaim was sent to Majdanek concentration camp, where his head was shaved and he was given the striped uniform. An older man in the queue for selection told him he must lie about his age and tell the guards he was a builder. It worked. First, he helped build a barrack block. Then he volunteered for a detachment that was sent to build a pickle factory at Zamusch. Even when he was weak from typhoid, he knew he had to work. Chaim was then sent to Auschwitz, where he kept his head down and went on laying bricks. By the end of 1944, the Russians were closing in, and he was sent by forced march and then train to Ebensee, in Austria, where the Nazis were preparing their last stand in the mountains. At liberation, Chaim was lying in the hospital wing, weighing only six stone and so weak from dysentery that he could not even cheer when the Americans arrived.
In the story that he told me, Harry emphasized how over and again he had faced death, but luck had intervened, and each time he had been saved. He had been secular all his adult life, but that day he was wearing a yarmulka and he had been attending synagogue. For nearly forty years, he had believed all his family had died in the Holocaust, and that he was the sole survivor. But then on January 25 1982, he had received a call out of the blue from America. A stranger was asking did the C stand for Chaim? Yes. Was Chaim from Hrubieszow in Poland? Yes.
“I think you had better sit down, because what I am going to say will shock you. My name is Mike. My mother is Manya.’”
Manya was Chaim’s sister, whom he had always believed lost. She had survived the camps, emigrated and married Meyer, her childhood sweetheart. Now they lived in Oklahoma, with their son. Four days later, Chaim and Manya and Meyer were reunited at Newcastle airport. 8,000 Jews had lived in Hrubieszow before the war. They were three of the 200 who had survived.
I had never met a Holocaust survivor before. I was able to sit in the quiet little room behind stage at the Theatre Royal, and hear Harry me the story he had been unable to tell for nearly sixty years. Now he told it over and over again to anyone who would listen, but particularly to local school children. He wanted a new generation to understand the reality and the horror of the Holocaust. The privilege of his company, face to face for several hours, was the blessing I had not expected.
Tom Moses and Chaim Nagelsztajn each endured the worst that human beings can do to each other. Hearing their testimonies affected me more deeply than any lecture, book or film could. I will never forget those encounters. They had the authenticity of lived experience. As the Apostle Thomas says, only show me the marks, and I will believe.
But the power of first-hand experience is also important closer to home, in less extreme circumstances. In my job at UEA’s Faculty of Medicine and Health Sciences, I am responsible for service user involvement. For example, when we interview prospective students of nursing or rehabilitation sciences, we use patients and other members of the public to help us decide who should have a place. When we teach about disability or ageing or mental illness, we invite people with lived experience to share their stories with our trainee doctors. When we plan or validate our courses, we try to ensure that the perspectives of lay people are included. Service user involvement at my university, and many others, is more than jargon or box ticking. It’s a recognition that the academic expertise which we lecturers have, derived from our research and scholarship, cannot tell the whole story. We use the term “experts by experience” to refer to our partners in the community who have different but complementary insights into illness and infirmity. We have data; they have lived experience. We have arguments; they have testimony. In the words of another medical student, the poet John Keats, “an axiom is not an axiom until it is proved upon a pulse”.
Whether it’s Tom or Chaim, or my service user partners Kevin or Amanda or Joyce, these interaction are not about pity, or even empathy. They are about growing awareness of the reality of another’s suffering. The outcome, in every case, is to enable us to gain respect for the other, as a human being, and as a survivor of trauma, or exclusion, or difficulties of body or mind. When our students evaluate their teaching, it’s usually the opportunity to learn from someone with first hand experience that they rate most highly. I know, too, that they will remember an individual story long after they have forgotten a sociology lecture. The truth of life is irrefutable.