|John Sullivan with his Daughter Susan in 2011|
Some things are too horrible to contemplate, especially when they touch on your life and affect your friends and family. Long time regular readers of this blog will be familiar with long time contributor to this blog, Mr John Sullivan and his daughter Susan, who passed away in 2020 from covid.
John believes that Susan died as a deliberate policy of 'culling' disabled and vulnerable people in the first wave of Covid. When Susan was admitted to hospital with Covid, Johns family expressly requested that Susan did not have a "Do Not Resuscitate" notice placed on her and all efforts would be made to save her. Susan lived with the Downs condition. She was in good health prior to covid. The families wishes were ignored.
John is not a man who ever gave up on Susan and he's not going to start now. Please watch this video podcast and read this article, which explains his campaign
I have to confess that when John contacted me and asked me to help publicise his campaign, I struggled to deal with what he was saying. Not because I don't have immense respect for John and his family, but in all honesty, what he was saying dug up a lot of very raw emotions, that I have struggled to deal with.
This is especially painful for me to deal with. My cousin Theresa Fanning, who also lived with Downs Syndrome, died of Covid. Theresa was in poor health prior to contracting Covid and was suffering from demetia. I was very closed to Tessie, as I knew her. I, rightly, had no say in any decisions about her treatment. She has brothers and sister who felt that the DNR was the right path for her, given her diminished quality of life in recent years. From what they told me, it was unlikely that much could be done for her by the time she was admitted and her passing was peaceful.
I used to take Tessie to Lourdes with our group in the summer, but she had become unable to travel, several years previously. My main reticence about publicisings Johns campaign was that I didn't want my cousins to see my comments as a criticism of their decisions. I thought about not mentioning Tessie at all, but that would be plain dishonest. When it comes down to it, I realised that the two situations were very different. It would be a dereliction of my duties as a blogger to not give John's campaign a platform. Every family has the right to do what they feel is best for their loved ones, and to fight for justice for them. I have no criticisms of what happened with Tessie, her siblings are comfortable with her treatment and the decisions made and I fully support that. John's situation is different and I support the Sullivan family as well.
Whilst, I am not criticising Tessie's treatment or the circumstances leading to her passing, I am sickened by the fact that we couldn't properly mourn her, due to covid regulations, but Boris Johnson and his cronies were partying, ignoring the rules that meant we simply had to mourn alone, in silence. I sincerely hope that when people vote in the Uxbridge by election, they do not forget the behaviour of their former MP and his cabinet chums, including the current Prime Minister, who was up to his neck in the shenanigans.
I also have to question whether protocols were properly in place to protect Tessie at her home, in the care of Barnet council. We all know of the appaling death toll at care homes. Everyone knew Tessie was highly vulnerable. Was every measure possible taken to prevent her contracting covid? I genuinely don't know. What I do know is that in tens of thousands of cases, vulnerable people in care were let down. The sad truth is that this has saved HM Government a fortune in care costs, as looking after vulnerable people with dementia and other similar conditions is extremely expensive for them.
In truth, I'd rather not think about the whole thing. Yes, that is cowardly and dishonest, but it is far more comfortable to think of the future, of your next holiday, or the next family barbecue. But John and his family have an empty chair at their family parties and they believe the were failed. As for Tessie, when she passed, we didn't hold a wake, we had a gathering a year later when the regulations allowed. It was nice to see the family, but I feel she was robbed of the send off she deserved, which is important in our Irish tradition. Me, All I could really do was make a video and put some of my music to it. She was a beautiful and fun person. Many people seem to think that people with Downs syndrome have no right to exist, are sub human. I disagree profoundly, I celebrate the fact that humanity embraces our differences. This was my tribute to Tessie, please have a look. It may give you some insight as to why John feels that people with Downs syndrome are people and they deserved better.