Paul Kilmartin points a thought-provoking finger at government policy in the face of one of the most concerning news stories of 2017 so far.
An 11 year old died in Tullamore.
All her short life she suffered a lot.
Her Mother was a doctor and gave her some injections to help with the pain. She died soon after.
Her Mother felt let down by Ireland’s services.
The Health Sector needs more money to provide better services.
On Saturday the 15th of September, 2012, an event took place in a large midlands town which would as it concluded, turn an eye on the role and pressures of the carer in assisting the severely disabled. Despite the legal and ethical ramifications, which as of now have found the primary carer innocent of all charges, the smaller points of detail galvanised the public’s opinion of the woman who was accused of the manslaughter of her 11-year-old daughter.
Emily Barut, 11, daughter to Bernadette Scully and Harun Barut, and living in Tullamore, had led the most difficult of times in her profoundly disabled young life. Suffering from severe epilepsy, microcephaly and cerebral palsy, she had epitomised what it would mean to suffer. Emily, as her mother testified to in court, would suffer badly from colic, crying incessantly. In the last few weeks of her life, she had undergone surgery to replace the tube through which medicine was being delivered into her stomach. According to her mother, she had been having more frequent and violent seizures in the days leading up to her death.
This had led to Bernadette Scully, a practising G.P., administering the drug, Chloral Hydrate, when her daughter became upset at 2am and 6am that day. She also said that Emily then had a massive fit after 11am and she administered some more. Emily died, as the State Pathologist, Dr. Marie Cassidy said, from a massive seizure which occurred six to eight hours before her death.
Throughout the trial of Dr. Bernadette Scully, a separate picture began to emerge, away from the accusations. It was one of hopelessness that Bernadette Scully felt in the face of the suffering of her only daughter. She told of how ‘people were not queuing up’ to help her disabled daughter. And in fact, this is a similar tale from the many families who care for children or adults with disabilities of any kind. Bernadette Scully felt let down by a complete lack of services.
Advocates for services for the disabled are constantly fighting for access to financial aid and greater inclusion in society for those who need it the most. The glare of the media’s spotlight shamefully moved away from the case of those with a disability in the weeks after the acquittal of Dr. Scully. Nothing to see here folks, move along.
We don’t have the resources, that is the Grimm style fairy-tale tale that is often heard while referring to supports for families of those with disabilities. It is deemed more important for the governments of our time to build a new Luas line or shorten a commute by spending seven million euros on a bypass around Athlone. Let’s think about that. Emily Barut and hundreds more like her deserve that we think about that.