Say it out loud. Nay, whisper it low. Because whispering gives the inspired brand name its full comforting resonance. Softenon. The sweet sibilance of it. You’d know it would be gentle in its says, soothing your nausea, wrapping you softly around in much-needed sleep. Softenon. So harmless, although your GP would happily prescribe it for you, they wouldn’t need to. Just turn up at the local pharmacy and it was yours for the asking. Something to ease your pregnancy.
Maybe revisit that word “harmless”. Because, while the pill was doing exactly what you were told it would do, it had a hidden agenda, did Softenon. If taken on week 10 of your pregnancy, it would do one kind of damage. Taken on week 15, it would do a quite different kind of damage. You pay your money, you take your choice. Except that it was an unseen, unknown choice. Even if you took one single pill — one single Softenon — depending on when you took it, the baby inside you would suffer horrendous damage to its internal organs. Or be unable to develop legs. Or grow only tiny vestiges of arms. You wouldn’t know that until your baby was born and the medics took it away. To be monitored. To be examined.
You knew something was wrong, but it was unimaginable. Even when your little child was unwrapped in front of you, weeks later, and you saw she had no hands at all, or he had stunted legs, you found it difficult to comprehend. That’s if the baby hadn’t died in those post-birth days. The times being what they were, you might say to yourself that this was God’s will.
You didn’t know that in countries all over the world, babies were being born with similar damage, some dying, some surviving. How could you know?
You barely had time to turn on Radio Éireann, never mind read a newspaper; and anyway, neither would cover the Softenon issue at the time. Mainly because they didn’t know about it. It took a few doctors on the continent to register the statistics and work back to the cause: Softenon. Although in their country, it mightn’t have been called that. It might have had another brand name. One way or the other, as it moved from miracle drug to killer and maimer, it became known as thalidomide.
Scannal: Thalidomide, a documentary on Ireland’s experience with the drug will air tomorrow night on RTÉ One and on the RTÉ Player at 7pm. According to RTÉ, “This is arguably the first time the whole story of how the Irish State has dealt with the thalidomide scandal has been told.”
Watching a preview is to be transported back to a black-and-white Ireland where coping was the only choice. The little thalidomers — the ones who survived — learned to use their feet as hands, to contort their torsos so the minuscule hands sticking directly out of their shoulders could hold a paintbrush. The ones living on farms learned to do versions of the tasks completed by their peers.
What distinguishes Scannal: Thalidomide is the absence of self-pity or even recognition on the part of the sufferers interviewed, that self-pity could be useful. One of the women remembered going to her first “hop” and having a family member tell her bluntly that a short-sleeved dress revealing her damaged arm would preclude her being asked up to dance by anybody. She wore a long-sleeved dress and got on with it. Some of them learned to drive cars modified for management by bare feet. Others became competent on the farm at driving tractors similarly modified.
What Scannal: Thalidomine establishes is that Ireland, as a State, colluded in the causation of many of the damaged lives. Footage of a young Dr John O’Connell TD shows him furiously stating that he had been able to acquire thalidomide over the counter a year and a half after it was supposed to have been withdrawn. One of its victims confirmed that his mother had taken it long after the so-called withdrawal. Black and white footage of TP Whelehan — the Irish distributor — ran under a voiceover saying that the “warning” leaflet which went out with Softenon after the malformations appeared was designed to look as ordinary as any normal pharmaceutical leaflet. So why would anybody read it?
The State offered John O’Connell nothing but opposition when the fiery TD started to look for compensation for the thalidomide children. O’Connell was bitter to the day he died about the State standing against the children it was supposed to cherish
Compensation, when it came, was ludicrously small (one victim got €6,500), made without admission of State responsibility during the continued availability of thalidomide when the Department of Health should have done as the manufacturers did decades later: get the stuff off pharmacy shelves and warn every mother (Radio Éireann would have been delighted to help and would have effortlessly reached virtually all mothers-to-be in a matter of hours) not to take it if they already had it.
What the programme doesn’t say is that compensation won when the children were small was based on the absolute presumption that they were going to die young
Assist them through the peer pressure of adolescence? Guide their career-planning? Assist as mis-used muscles caved in? Sure, none of that was going to happen. God love them, it’s very sad but they’re not long for this world, so let’s wish them well and move on. Because our good and expensive lawyers, our brilliant AGs, are happy that the State has no liability in these cases. That sound you hear? It just might be hand washing.
All these years later, many of the sufferers have died. Forty are left. Right. Four, zero. They’re now in their 60s and their bodies are a tangled misery of protest, as one set of limbs go on strike, having been forced for more than half a century to do work for which they were never designed.
On Thursday last, the Welsh announced life-long financial support for their 30 thalidomide victims. Just a week before that announcement, the Tánaiste was asked in the Dáil about the Taoiseach meeting the thalidomide victims. In one of those moments where instinct fortunately wins, Leo Varadkar said he hadn’t known about the meeting but was very glad it was happening. That’s a glimmer of hope shone on what RTÉ describes as “one of the most significant medical scandals in Irish history”.
Before Micheál Martin leaves the office of the Taoiseach, he can cut through all the lawyers, all the habits of a system defending itself, and ensure two actions. First, an apology to the handful of still-living mothers who bore the burden of self-blame. Second, a fair and equitable compensation for the victims to acknowledge that the State did itself no service over Softenon.
The three party leaders can and should, before the job-switch, stand in front of Government buildings and do right by this wronged group.