Day 84 Mothering in the Extreme Death Disability

Day #84 Mothering in the Extreme: Death, Disability and Dehumanisation #justicefor. LB http: //www. youtube. com/ watch? v=n 7 m. Mb. Fn. Uijw

If we are honest with ourselves today, we will acknowledge that the ideal of Democracy has never failed, but that we haven't carried it out, and in our lack of faith we have debased the human being who must have a chance to live if Democracy is to be successful. (The Moral Basis of Democracy, 1940) Somehow we must be able to show people that democracy is not about words, but action. (India and the Awakening East, 1953),

Overview Why I am interested, a little bit about autism and learning disability, LB and The Blog – Happy Times LBs death The ‘Sociological Science Bit’ • Death by Indifference (avoidable deaths) • Mothering and Suffering The 107# and great support What might we do? However small…. And Hope…

Why the interest? EASY! • I think Sara is bril, and met her several years ago, along with Katherine Runswick -Cole (Mums and sociologists together) – oh and we were going to write a book, but it never happened – YET. I saw Sara at a conference not long before LBs death, in Coventry, things were not okay, and Sara looked pretty drained… I went away with a heavy heart. • My daughter? 27 years old, learning disabled, fun, and one of her BIG LOVES is cutting out piccies from the Argos Book – they tend to be bottom draw items, and then makes lists. She also loves performing! . • I CANNOT FEEL WHAT SARA IS, BUT DO WORRY FOR A FUTURE FOR MY DUDE-ESS AND ALL OTHERS OUT THERE

http: //www. youtube. com/watch? v=u. J Gf. Q-0 c. Ah 4&feature=related

The Blog – Sarasiobhan and LB Sara, as she said, the ‘blog started as a record of random happenings that I’ve experienced over time. It is also about capturing everyday life, through image and snippets of conversation and observations, at home, on the bus and just wandering through life. Key players in these events, apart from LB […] will probably include Richy Rich and kids; Rosie, Will, Owen and Tom. As for me, I am a sociologist by background and work at a local university focusing on disability, health experiences, difference and inclusion’.

So Sara a fellow sociologist and mother with an intellectually disabled son started her blog when LB was 17 years old. My understanding of it was largely about the desire to be light-hearted in narrating living with disability, principally because the records of so many lives re-counted (my research included) paint depressing and often harrowing tales. Sara on the other hand wanted to share the ‘fun stuff’, as well as have a ‘record of random happenings that I’ve experienced over time’. As she called her blog ‘mydaftlife’, which sums up the silliness of what she seemed to want to portray. Nevertheless all good intentions aside it also became about ‘the experience of negotiating mental health/learning disability services, as the lack of both meant that LB was admitted to inpatient care a few months ago now’. Thus in March 2013 at the beginning of the ‘in care’ story she tells us her son has been sectioned and ‘It’s easy to pop in for 10 minutes and the open door policy gives some confidence in how the staff are treating the patients’. Yet negotiating the services was tragically only the tip of the iceberg regarding her story, for as we know, by July her son was found dead in the bath. The tale that Sara, or any other mother does not want to ever tell is that of the meaningless and preventable death of her child.

Example of blog pre: death - A commotion in the ocean Posted on 02/08/11 Sticking my toe back in the holiday thread. So many memories. Sigh. Richy Rich regularly took a selection of the kids camping. One time he had three of ‘em, aged 6, 4 and 1. 5. On the Sunday, he took them to the beach at Highcliffe, near Bournemouth. They walked down the cliff path to the beach, dumped their stuff and ran into the sea. Instantly a big wave knocked Richy’s glasses off and swept them away. Now Richy is like Vincent van Gopher without his glasses. He can’t see squit-diddly. This is not a good situation to be in with teeny tiny kids in the sea. I was at home at the kitchen table working when I got the call. “I’ve lost my glasses in the sea!” “WHATTTTTT? ” “A wave knocked my glasses off. I can’t see a thing!”. “FUCKINGHELLYOUAREJOKINGMERIGHT? ” “No, I got the kids out of the water but we’re in a huddle on the beach. I think you’ll have to come down and collect us…” Er. Right. Hometowny to Highcliffe beach, by public transport, on a Sunday. It had to be at least 4 hours travel. And what would the four of them do in the meantime? Huddling on a beach was quickly going to become unworkable. After a bit more discussion about trying to find the glasses (“wheredego? ”) Richy decided to edge the huddle back up the cliff path, to see (ha ha ha) if he had any contact lenses in the car. In the meantime, I started to check out the train times. Twenty five minutes he called me back. He’d found one lens. He thought if he drove slowly and kept one eye covered, he’d be ok. I put the kettle on.

A Happy Dude, a Happy Surfer from the blog ‘Transition (a steady descent)? ’ Posted on 02/12/12 7 months before he died… Take a few minutes to introduce yourselves to each other, why are you here? http: //www. youtube. com/watch? v=8 -Wh-M 3 m. Rhw I’m not sure if I’m posting this photo to hold onto his obvious enjoyment/happiness during the trip, facilitated by school staff who consistently push the boundaries with the kids, or whether I’m posting it as a record of transition (which I’m increasingly interpreting as a steady descent) into ‘adult services’. (sarasiobhan)

The Unit: Day 107 Posted on 04/07/13 LB died this morning … In the bath… In the unit… He would be pleased the CID are LOOKS LIKE IT SHOULD BE A TRAILER FOR A SCARY MOVIE? But it is not…

The Day After Posted on 05/07/13 I made sounds […] at the hospital yesterday I never expected to make. Or even knew I could make. Sounds of keening, howling, inconsolable, incomprehensible grief, sorrow, despair and darkness. Our beautiful, hilarious, exceptional dude was found unconscious in the bath in the unit before a planned trip to the Oxford Bus Company. The psychiatrist from the unit who called me at work around 10 am to say that LB had been taken to hospital, gave no steer he was pretty much dead. I asked her (as an anxiety induced after thought) if he was conscious when he left the unit in the ambulance. She said they’d cleared his airway but he hadn’t regained consciousness. She made no suggestion I should urgently go to the hospital or that I should go with someone. It was a care less call. Much like the ‘care’ he’d always experienced outside home and school. I arrived at the hospital twenty or so minutes later, with a work colleague who (so, so kindly) insisted on coming with me. I was immediately faced with a LB has a ‘dead heart only kept alive by a ventilator’ story. This news generated my, to that point, unknown sounds. I hugged him while he died. Unspeakable horror. Agonising pain. The combination of work mate, A&E staff and my mate Mary, who works there, was outstanding as we gathered the kids and sat in the ‘relatives’ room. We will forever be grateful for their care and sensitive attention. We are now in a space I can’t describe. Tom hopes LB is hanging out with the old comedians he loved watching. Having a bit of banter. I can’t move beyond wondering how a hospital unit, with only four or five patients, who made such a fucking fuss about asking LB’s permission for us to visit on a daily basis, could let him die in the bath.

The aftermath a public blog from Sara, a mother, about the immediate aftermath of the death of her teenage son, LB or as we know Connor Sparrowhawk, who was ‘in care’ for a little over three months after being sectioned. The quotes in the aftermath blog say something about systemic violence, institutional lack and inhumane practices.

TO REPEAT… Many of Sara’s and other Mums with disabled children say something about • Systemic Violence • Institutional Lack • Inhumane Practices

What is death by indifference? – avoidable deaths…

What is death by indifference? ‘Sparrowhawk, who had autism, a learning disability and epilepsy, lived at home and went to a special school, but was unsettled and agitated […] Less than four months later on 4 July 2013, he was found unconscious in the bath at Slade House and died, A post-mortem showed he had drowned, probably as a result of an epileptic seizure. The trust initially attributed his death to natural cause, but an independent investigation demanded by Sparrowhawk’s family concluded his death could have been prevented (Salman, 2013). Appallingly I would argue this is yet another ‘death by indifference’ seen in the UK alone. Intellectually disabled people are dying due to delays in diagnosis, failure to recognise pain, messiness around do not resuscitate (DNR) and mental capacity issues, lack of basic care and poor communication (Mencap, 2012) still. This violence continues despite the fact that this report in 2012 highlighted avoidable deaths of intellectually disabled people and was in response to an initial report on avoidable deaths of intellectually disabled people (Mencap, 2007). These deaths leave a trail of mothering suffering to say the least.

MORAL AND ETHICAL QUESTIONS NEED TO ASKED ANSWERED. Intellectually disabled children, one could argue, are at times both vulnerable and frail and therefore unable to care for themselves. Nevertheless, the mother is also frail and vulnerable at times during her maternal journey. This particular killing field is philosophically a very dangerous place to go as for both the child and mother all the lives are worth living, and all are worthy of humanity and care. (see the eugenics stuff here if we think it is okay – some lives have less worth). Thus when an intellectually disabled young adult dies prematurely in ‘care’ (or at the other end of the spectrum stories of a mother killing her disabled child hit the media due to lack of care at best, abuse and violence at worst) MORAL AND ETHICAL QUESTIONS NEED TO ASKED… AND ANSWERED. These might be about the care for the ‘child’, the mother’s mental health, or the lack of care experienced by such families from external agencies and wider society.

Blogging’s a good’un As it happens mothers are blogging their about every day lives, which has become a pastime for some in gaining answers to questions about their children generally, but it has also been suggested it is a space to care (Doucet and Mauthner 2013). Although engaging in critical debate Doucet and Mauthner (2013) do ask questions of ‘mommy blogging’ in relation to this ‘caring space’ as they ponder the separation of care, work and consumption practices, as well as question how integrated or distinct from care work it is (ibid: 103). Nevertheless people in different blogging and internet forums come together to discuss issues virtually and often with a view to support. For example, Sara in her blogs had hugely compassionate responses since her ‘death post’ and the mothers on Mumsnet are equally supportive to different causes. Therefore in life and in death there are necessary discussions to be had about intellectual disability, mothering, care and being human. Yes! I could argue the classed nature of this blogging, as it certainly is an issue but can’t get into this here…

Conceptually I continue to engage with three care spheres, So if we think about the blogs, death by indifference and ‘virtual’ support, other peoples responses to a learning disabled person as well as actual support and suffering experienced then this makes absolute sense. The care spaces are: The emotional - where love and care psycho-socially questioned The practical - where day to day care is carried out. The socio political - where social intolerance and aversion to difficult differences are played out. I draw upon an ethics of care and love labouring (Lynch 2007, Lynch et al. 2009), as well as other sociological research in unpacking hugely emotive experiences and philosophical debates in not only the care that is carried out by mothers but what care is given to them, emotionally, practically and politically. I also engage with suffering as it seems, suffering is a normal part of being human (Craib 1994), but in extreme cases can be too much to bear and inhumane (Cohen 2001, Wilkinson 2005). Still, is it in being human that we might be able to see a way forward from suffering? ? ? ?

Care in life and Death – any hope? TO REPEAT FROM EARLIER: The tale that Sara, or any other mother does not want to ever tell is that of the meaningless and preventable death of her child. Sara’s death and grieving story, like others, (Mencap 2012, Barleon 2013) is about lack: lack of communication, lack of care and lack of humanity prior, during and after the tragic event. Critically, practical care work and love labouring can cause immense distress and in some cases induce suffering for mothers, from the extreme emotional labour carried out but also due to systemic violence and lack of care politically.

Hope and passion for the possible? No I don’t have the answers…. Soz BUT… … we can know that hope is considered unfathomable, unknowable, faith based. Hoping for something suggests that we don’t know that something will occur, but that it might do. There is no rational system that we can tap into when it comes to life and loss where we can say absolutely this will or will not occur. (Here comes a ‘science bit’! - Interestingly bringing together philosophical reflection in this way with peoples everyday actual experiences draws upon Ricoeur’s (1989, 1995) notion of hope and the passion for the possible in engaging with existence and thinking. I do like the idea of the passion for the possible…. Hope is irrational, but so is life and death. Just as life is not about normalising and sameness, it is not rational. Yet although we can remain hopeful, the ‘cost’ of mothering and suffering needs further understanding.

Largely because the ‘cost’ of mothering In mothering an intellectually disabled or autistic child or adult, there are significant costs. These costs straddle the emotional, practical and socio-political spheres. However none of these ‘caring costs’ are easily defined due to the messy nature of emotional work, love labouring and care work involved. REALLY? We know that more work needs to be done here on mothering and disability, but funding it is pretty hard! Why is that? That is a question for another time maybe…

Before 107# Sometimes there are no answers even temporarily, and to be left with a void without hope is dark. Hope gives life, in whatever form that takes. But hope is not enough. WE MUST ALSO DO. But we must also care. We need to understand the value of care and emotional support for families and their intellectually disabled children. Moreover we need to provide a platform for understanding sociologically interdependence with a view to gaining socially just practices and alleviating suffering. In truth we still have some way to go as in certain realms of philosophy for example it remains fixed on the notion that intellectually disabled people can be likened to pigs and dogs !!! (see Eva Feder Kittay for example where she talks about this) when it comes to being human and non-human and this has a hugely negative impact upon mothering disabled children and adults. But as social media and causes are vehicles to utilise, so too are they spaces to provoke and get things done? This is what Justicefor. LB 107 is all about.

#107 DAYs JUSTICE FOR LB Connor Sparrowhawk was a fit and healthy young man, who loved buses, London, Eddie Stobart and speaking his mind. Known as LB online, short for Laughing Boy, he also happened to have autism and epilepsy. On the 19 March 2013, he was admitted to Slade House Assessment and Treatment Unit run by Southern Health NHS Foundation Trust. Tragically, after #107 days in the unit, he drowned in the bath on 4 July 2013. An entirely preventable death. Twelve months later #107 days seeks to inspire, collate and share positive actions being taken to support #Justicefor. LB and all young dudes. We want to harness the energy, support and outrage that has emerged in response to LB’s death and ensure that lasting changes and improvements are made. The #107 days of action will start on Day 0: Wednesday 19 March, and will continue until Day 107, the first anniversary of LB’s death, Friday 4 July 2014. This blog will be used to share information, ideas and evidence of the changes made, big and small. Share this:

http: //107 daysofaction. wordpress. com/

Get your postcard please, chat, eat stuff (if you haven't already!) and put your address on it. Then after a chin wag, write something on it that says something about justicefor. LB, mothering and learning disability (do you have a friend with a disabled child/ know a young dude), anything really. Ask yourself on the postcard ‘did you do what you said you would’? Talk to someone, help someone, spread the word, talk to your child/family/friend/manager/colleague. Or propose to even write about it in one of your essays next year if appropriate, OR THINK ABOUT YOUR OWN RESEARCH into what you might do…. Just a couple of sentences on the postcard. I will send them out in the post early September!

http: //www. youtube. com/watch? v=RRDq uine 5 k. I#t=37 http: //www. youtube. com/watch? v=n 7 m. M b. Fn. Uijw Here comes the sun! and 99 Red balloons!