The newswires are buzzing with activity. One father says he’s had enough and adds: “we need a campaign” (mmhhhh…); another writes on Facebook about how much he could do for his son would the HSE only give him the money they are wasting on agencies; and even the New York Times publishes a comment made by another father (me) on Lu Spinney’s summary of her Beyond the High Blue Air book.
I already mentioned the article in The Journal by Tom Clonan from last week, which was followed up by another interview with him on this afternoon’s RTE’s Ray d’Arcy show with Katherine Thomas. Tom “has had enough” and calls on the LGBTI Equality Movement to rejuvenate their highly successful campaign for Marriage Equality, but this time focusing on Ability Equality. Mmmmhhh… He also says no politician is interested in the topic. I don’t know how much Tom has tried to make contact with politicians – my own experience has been a bit mixed but I have found many of them if not always helpful but at least listening, some of them very supportive and understanding.
A father of a young man with an acquired brain injury wrote on Facebook about his frustration with the health system and the scandal of the abandonment of young people in nursing homes – echoing the issues raised on the RTÉ’s News At One about young people (more than 1,200 apparently) in nursing homes. He is saying that if his family had access to the enormous amount of money paid to nursing homes and agencies for his son, he could look after his son at home, which would provide him with much better care and would cost considerably less.
A bit more on that account in the New York Times and The Guardian (Protecting My Son Meant Wishing for His Death by Lu Spinney on 11 August 2017 in the New York Time). Lu Spinney is the author of the memoir “Beyond the High Blue Air,” from which the essay is adapted. Without sharing many details (and in this case ‘details’ make all the difference) she heavily complaints about the fact that people are allowed to live, or rather: not allowed to die, with a severe acquired brain injury. She is convinced her nonverbal minimally conscious son ‘told’ her daughter that he wanted her to help him die – but the doctors wouldn’t allow it. I found that story so disturbing and the more than 150 (other) comments supporting her view really hard to understand. This is why a shared a bit of Pádraig’s story on the New York Times website, here. (You can click on ‘recommend’ if you like what I wrote.)
Pádraig and us went to have a look at two potential sites for An Saol this afternoon and just made it back home in time for his carers. Two friends called in later, one of them jetting off to Northern India tomorrow morning on a secret mission filmed for TG4. We hope he won’t forget to bring back tea and incense.