Week 5: Quilt Graffiti #107days

This week of #107days is focused on the amazing Justice Quilt which is coming to the end of its residency at People’s History Museum, Manchester.

Chalkboard3

Jack, who took the awesome photos in the last post, wrote us a guest post about his visit to see it at the weekend:

I am truly honoured to have my photos on here. When we got there on Saturday, first of all I was trying to capture the quilt from every possible angle I could find (Sara if you want about 30 more photos of the exact same thing but with more blur, random building structures, people in the way and poor lighting, I’ve got you covered).

Then I began to look properly, still taking photos of course, but looking at each individual patch.

Ceri, Phil and I were there pointing out all the incredible intricate designs for about the next half hour and then when we went upstairs (I was looking for more angles) we found that we’d just missed another load of amazing ones! dude. was my first favourite, although I ended up with about half the quilt as my favourite in the end.

I think that’s what struck me the most when I was there, this absolutely huge quilt, full of so many different wonderful messages and memories. If I could stitch, I think I would’ve liked to have done one like dude. Sara, you’re one of the few people I know that still says dude and I think I associate it with you just as much as I do the blog!

For me that’s a happy thought and a sad thought. If I’m honest, I don’t read the blog as much as I used to. When I think of the blog I think of the fantastic stories I read when Rosie first told me about the blog one night in first year (2011). (I’m paraphrasing but) She described it as an embarrassingly great selection of stories from home that she looked at whenever she felt homesick or upset. A few months later I was trusted with the URL, read a few stories (Johnny English cave story remains a firm favourite) and signed up for emails much to Rosie’s dismay! I was experiencing the more entertaining part of the life of the dude in real time now, but I never met the dude, so I associate dude. with you and the blog. Even when I read the stories again now I’ll hear the TO FANCY OR NOT TO FANCY? THAT IS THE QUESTION in Tom’s voice (it does sound like something he’d say). I’ve never heard Connor’s voice, I don’t know what it sounds like.

But then again that’s something I find strangely wonderful. Having been around so much since his death, heard so many stories about what a caring, kind and funny young man he was (sometimes I’ll even work them into the conversation to get Rosie to re-tell them, sshh!) and reading them myself before this all happened I feel like I know him despite all this. I think that’s testament to all of you and I’m sure many of the people who contributed to the quilt or to #JusticeforLB or any of this without ever meeting Connor, just like me, feel the same.

I often think about how I nearly met Connor. If I’d been friends with Rosie just a few months earlier in first year, maybe even a few weeks earlier then I may have come down with Ceri and the other Manchester lot and met him during Easter 2012. Later on Saturday Ceri was telling me about how when she’d met him that Easter he was mostly watching videos of trucks on youtube and listening to techno music, from what I know I’d say she had a pretty classic experience of Connor, an experience she described as pretty cool. I’d say she was probably right.

But then I think about how that thought process is utterly ridiculous.

I should have met Connor in August 2013 when I was going to visit Rosie.

When I brought you lemon cake on the 8th of July 2013, he should have had a slice, or ten.

I should know what he sounds like.

I should be reading hilarious stories that come into my inbox every few weeks.

I should have my own stories to tell other people.

This should never have happened.

When we first saw the quilt Ceri pointed out the teardrop with HOWL written in it, she told me how whenever she sees a mydaftlife post with a howl caption, she feels compelled to read it. When we went upstairs Ceri saw a chalkboard supposed to be a discussion board about whether or not Nigel Farage and other politicians have right to a private life. Having seen the quilt she felt compelled to write #JUSTICEFORLB all over it instead.

Chalkboard1

I saw the quilt and felt compelled to write Fuck Southern Health.

Chalkboard2

Day 94: Citizen Advocacy and Education Fest #107days

Day 94 is another shared day, this time between Barbara and Gail. They both opted to write blog posts, Barbara’s is featured below, together with extracts from Gail’s although you’ll need to visit her blog for the full piece.

When asked why she was supporting #107days and #JusticeforLB this is what Barbara had to say:

I’m a citizen advocate who is also a teaching assistant on the BA(Hons) Learning Disability Studies course at University of Manchester and a volunteer supporter with their Partnership Steering Group. I first became aware of LB when I stumbled on Sara’s tweets last winter as a novice on Twitter. Shocked by Connor’s death, struck by Sara’s frankness, I was and remain in total admiration of her determination and staying power. I too want to see Justice for LB, justice for all the dudes young and old. The campaign makes me wonder what becomes of abuse victims who don’t have anyone to speak up on their behalf… I believe many people, members of the public, can make a positive difference through citizen advocacy: you don’t have to be an expert to be an abuse watchdog.

Barbara asked to write a blog post for her action, which is reproduced below, Speaking up for Citizen Advocacy.

In this blog I am going to touch on abuse, promote citizen advocacy and question current advocacy trends for learning disabled people. Abuse continues despite numerous reviews and recommendations. The reasons are complex but two issues stand out for me:

1. Bureaucracy, ingrained in service culture, obstructs and takes precedence over the support and care of individuals. Ever expanding, repetitive and often seemingly pointless, it leads to the neglect and abuse of individuals who are supposedly being ‘served’. There would be less abuse if services streamlined all this red tape!

2. Social Devaluation: People make unconscious judgements about others. Negative judgements mean marginalised people like those labelled as learning disabled are considered of less value. This can lead to them being treated badly and abused. Also they may well be denied valued things in life like supportive relationships, respect, love, autonomy and participation in meaningful activity. To combat this social devaluation Wolf Wolfensberger, an American psychologist, promoted the importance of creating, supporting and defending valued social roles for people at risk, social roles like family member, friend, worker, volunteer, artist, cinemagoer, holidaymaker, car owner. Thus vulnerable individuals can gain self-esteem and are likely to be viewed more highly and treated better by others in society (Wolfensberger, 1998). This is how citizen advocacy originated.

Day94Advocacy

Citizen advocates are volunteers who develop long term relationships with vulnerable individuals and speak up on their behalf. The advocate partner is someone at risk of having choices, wishes and decisions ignored, and who needs help in making them known and making sure they are responded to. The citizen advocate also attempts to meet their advocate partner’s expressive needs like emotional support, warmth, commitment, friendship, love. More information about the citizen advocacy partnership is available here.

Over 10 years my advocate partner Gloria (not her real name) and I have built up a close relationship. Like LB, Gloria is fond of public transport and our weekly meets invariably entail a tram or bus trip as well as a bite to eat. I have supported her to be heard and helped realise her wishes to get a car and go on holiday. Gloria has experienced abuse. Often the system is at fault and staff aren’t always aware. Ways I have helped to counteract abuse

  • Money spent irresponsibly by past support workers was refunded to Gloria in response to my formal complaint.
  • With my instigation, Gloria has received support from familiar support workers during hospital admissions to ensure past experiences of fear and neglect were not repeated.
  • The service was obliged to shelve plans to set up a staff office in Gloria’s home due to my protest regarding her tenancy rights. Awareness-raising is an ongoing need, for instance the connecting door with the neighbouring tenancy, keeping it open is convenient for staff but this breaches the tenants’ right to a private life.
  • I alerted the CQC who discussed the negative effects of staff shortages and regular use of agency workers with Gloria’s support service. Recent increased permanent staffing will hopefully provide greater stability.

Benefits are reciprocal: I have gained massively too and will always be indebted to Gloria for many things, including my degree.

UK Citizen Advocacy was developed in the 1970s/80s to support individuals being resettled from the long stay institutions, some of those partnerships continue today. The 2001 Valuing People policy offered local authorities funding to set up self-advocacy and citizen advocacy projects. Development of the latter was patchy and the impact unclear and sadly citizen advocacy has gradually receded. This may have been partly due to the difficulty in measuring the effectiveness of this long-term partnership. Time-limited interventions are easier to substantiate and understandably commissioners want to fund evidence-based advocacy. So paid case advocacy has expanded and so have Independent Mental Capacity Advocates (IMCAs) as a result of the Mental Capacity Act. The different types of advocacy – case, IMCA, self, peer, citizen advocacy – all have their value but not at the expense of each other. The long-term benefits of the citizen advocacy partnership are equally if not more valuable in fighting abuse.

With the introduction of the new Care Act local authorities will be duty-bound to provide ‘independent’ advocacy for certain people to ensure they are better involved in the assessment and care/support planning processes and to support them through safeguarding enquiries. This is great but the Learning Disabilities Observatory believe there is a real danger that organisations will only be able to support learning disabled people assessed as ‘eligible’ for advocacy services and advocacy will come to be seen by commissioners as another professional ‘service’ to be delivered. Who is going to speak up for the rest? If services are at fault in the perpetuation of abuse why is advocacy, with its history of campaigning for rights and mission to question service organisations, increasingly joining the service provision fraternity?

Indeed the introduction of the City and Guilds advocacy qualification means advocacy is becoming increasingly professionalised with some contracts expecting organisations to employ qualified staff. Meanwhile recent policies like Building the Big Society 2010 and Learning Disability Good Practice 2013 encourage local volunteering and involvement in social action, capacity building and development of more community-based support. Plus person-centred circles of support are current good practice. To my mind citizen advocacy fits neatly with all of these. Another reason for it to be promoted not neglected.

A citizen advocate is also independent. Although, there is a lack of research into the extent to which independence supports, or otherwise, produce beneficial outcomes according to the School of Social Care Research, many advocacy organisations are not independent. Most are reliant on state funding, some provide care or support services and others share premises, email servers etc. with the services they are supposed to be holding to account. Advocacy organisations which are reliant, either totally or partly on state funding, are in a difficult position to dispute the parameters of their commissioning contracts. Indeed this Tuesday, Patrick Butler in the Guardian claimed charities (most advocacy organisations are) are having to tone down their campaigning for fear of losing state funding. Compromising independence is likely to reduce advocacy organisations’ effectiveness.

On the other hand, their ‘Loose Cannon’ characteristic enables citizen advocates to be more effective. Unlike in the US, due to public dependence on the UK welfare state and the fact it is taken for granted, the importance of independent advocacy is not properly understood or thought necessary by services or the general public according to Wolfensberger. But what we actually need are more independent citizen advocates who are prepared to speak up for people like LB and Gloria. At this crucial time when abuse isn’t going away, I call on commissioners, policy-makers, advocacy organisations, all those with influence to reflect on the current situation of advocacy in this country and promote more voluntary citizen advocacy. I believe many more people, members of the public, can make a positive difference through citizen advocacy. Come and join us!

Gail has this to say about supporting #107days and #JusticeforLB:

I wanted to do something for the #107 days campaign because apart from the collective outrage that has been so evident it’s restored my faith in humanity. The sense of positivity it has produced is infectious, heart warming and gives me some hope that things can and will change in the future.

Sara is one of my dearest friends and I’ve known Connor since he was around 5 or 6 years old. We are part of a group of six close friends who all met when our dudes attended the same academy for crazy little dudes. We call ourselves the ‘life raft’. Our families have all socialised together for years and so obviously our kids all grew up knowing each other well too. Connor’s death shocked and saddened all of us more that I can say and we remain incensed that it was so preventable. I’ve spoken a lot about Connor and Sara on my blog, not least because his death came just 6 weeks after the sudden and unexpected death of my husband Bob and we’ve been coping with grief shit stuff on a similar trajectory. Similar but not the same, because of course Bob’s death was no one else’s fault. As I’ve been trying to deal with my own grief I’ve watched my friend and her family endure the most inhumane treatment by those ultimately responsible for their son’s preventable death. Compounding their grief and making dealing with their loss so much harder.

Although I’ve adopted today I’ve been raising the Justice for LB campaign in all the work I do, both for Dimensions UK as a Family Consultant and Oxfordshire Family Support Network as Transition support coordinator. I’ve raised it in training, in meetings and parent workshops, basically any chance I get to get this story out there. And, I’ll continue to do this long after the #107 days campaign.

Today Gail is speaking at the the Sunday Times Education Festival. A large event covering all things education and special education. You can read Gail’s full post on her blog, but here’s a taster:

There are a lot of high profile speakers and I’m up against David Starkey (and many others) in my time slot, so I’m not sure how many people will come along and listen to me, but it’s a chance to talk about the SEND reforms and the Children and Families Act and what it should mean to families and I was thrilled to be asked. I’m dedicating my talk to Connor and his family.

Day94Gailpic

My main focus is on Person Centred approaches and why without them the SEND reforms are set to fail. The need for this way of working in health, education and social care to become embedded in the systems that surround our children and the need for families to be treated as respected partners, involved throughout.

Gail’s post, and indeed her talk, will discuss person centred approaches and the role that they can, and should, play in ensuring good support for all dudes.

Day 77: Six degrees of separation #107days

Day 77 was adopted by Liz who has offered her thoughts on six degrees of separation, and how we can use it to support #107days and #JusticeforLB:

I started reading Sara’s blog after meeting her on Twitter through following somebody else who knew her. That is how Twitter works – we follow folk who follow other people we know and who we realise we have something in common with.

Sara was someone I wanted to know because I was doing PhD research around aspects of why the special needs domain is so problematic and I read some of her published work that resonated with me. In particular, she helped me with a minor dilemma when my PhD supervisor told me not to use the word ‘meltdown’ and Sara was able to point me to article she had written with ‘meltdown’ in the title.

As I read Sara’s blog, like many others, I was amused, challenged and inspired by her accounts of life with LB. When life got tricky, I was reminded of the struggles we had experienced with my son when we engaged in arm-wrestling with the authorities to get him the support he needed. My son was fortunate; he got a place in a specialist residential school where he was enabled to develop academically and personally. He is now living independently and studying for a foundation degree. But things could have been so very different when he was out of school and threatening to kill himself…

For LB and for Sara and her family things worked out differently. LB was a much loved young man who did not receive the care he was entitled to from those paid to care.

Last year, 4th of June marked the day of my PhD viva. It seemed appropriate to adopt the anniversary of that day as my contribution to #107days because if I hadn’t embarked on that postgraduate journey, I would perhaps never have met Sara and never heard of LB.

But on the other hand, I might have done. Some years ago somebody came up with the idea that if you take any two people on the earth, they are no more than six acquaintances apart – there is more about it on Wikipedia.

Day77Six_degrees_of_separation

By Laurens van Lieshout (User:LaurensvanLieshout) (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0/)%5D via Wikimedia Commons

When I started to think about how to use today, I started thinking about who I knew that might not have heard about LB. What would happen if I told them LB’s story and asked them to pass it on to others? I started thinking about people I was no longer actively involved with, but I had known in the past and wrote a few letters – and I got some replies, including a couple from Bishops and one from a member of the House of Lords, each promising to speak to others.

So the challenge today to me – and to anybody reading this – is to go through our address books and identify people who we have spoken to about LB. They may be work colleagues (past and present), people we socialise with, former partners, whoever… Once we have a list of names, send an email, an LB postcard, a letter, a text – whatever is appropriate for that person – and tell them about LB, a much-loved young man who died a preventable death because those paid to care didn’t care. Then tell them about other folk, young and not so young, who suffer unnecessarily and about parents who worry about what will happen to their children if they are no longer able to care for them. Most importantly, tell them we can make a difference if we spread the word and demand change. Ask them to tell their friends, colleagues, neighbours and folk they meet in the pub or on the bus about LB and ask them to tell others too.

If we all tell somebody today about LB, we can get lots more people making a noise and demanding more caring and responsible support systems so that more young men like Connor Sparrowhawk don’t die. Let’s make sure Connor didn’t die for nothing! 

Over to you now. Get talking, emailing, sharing….

Day 74: Letting the light in #107days

Day 74 was adopted by Fiona, an eLearning designer and video producer from Northern Ireland, who is interested in how we might use technology and media to reduce inequality and injustice. This is what she had to say about why she’s supporting #JusticeforLB and #107days:

A few months ago, a couple of tweets from a lady called Sara Ryan were retweeted in my Twitter timeline. Shocked by what I read, I looked at her profile and made my way to her blog. Two hours later I was still there, reading Sara’s blog. It was fantastically joyous and devastatingly sad in equal measure.

Many years ago, I lost my brother to cancer. He was 13 and I was 15. Unlike Sara’s son, Connor (aka Laughing Boy = LB), there was no incompetence involved in his death. But it was at a time when cancer services for children could at best be described as primitive. When you overhear a GP telling your mum that she’s being selfish when she’s feeling afraid to give her child morphine, you know there is something not quite right.

So, when Sara described trying to push the horrors away so that she can remember the good times with LB, it resonated with me. I was hooked into Sara’s story and wanted to become involved, and help, somehow.

And grief is a strange beast. In the immediate aftermath of a death, it almost protects you – numbness, shock, shutdown, self-preservation, darkness. As time goes on, chinks of light get in. You try to remember what was good about the person and use it to drown out the horrors. For years, I remember not being able to see my brother’s face, then one day, I could.

So today I dedicate this blog to letting the light in. In my own family, they couldn’t talk about my brother – It took them almost 10 years to put a headstone on his grave. His name is rarely mentioned, even now, some 25 years later. I loved how in Sara’s blog, she shared stories of LB, and little snippets of conversation. How Sara is coping with her pain and grief is a true inspiration.

This is what Fiona has to say about #JusticeforLB and all dudes/dudettes:

As well as seeking justice for LB, I love how the #107days campaign is highlighting the general crap provision and support for people with learning disabilities in our society. There are so many inequalities around people with learning disabilities. I continue to be shocked when I read statistics on this, for example – more likely to die younger – on average 16 years sooner than everyone else. If this was any other section of society, there would be people on the streets! You can read more about the inequality research here.

The very people we should be protecting the most in society are often discounted as an ‘inferior species’ not worthy of our full attention.

But improving life for our brothers and sisters with learning disabilities is not all about statistics. It is about all of us. In her blog, Sara talked about people who worked with LB, the Charlie’s Angel story made me smile so much. Sara also talked of how LB’s brothers and sister and their friends seemed to find an easy way of happily being together. If this can happen at a family and local community level, then there is no excuse for wider society getting it wrong.

Nurturing the Potential

We all need help to reach our potential. Sadly, if you have learning disabilities, this doesn’t happen in the way that it should. I’ll leave you with a story from a dude that I know. Eoin is 23 and lives near Derry in Northern Ireland. He tells us about his love of learning about World War II and his work as a volunteer in local events. Eoin is thriving and has had several short work placements in local businesses who have welcomed and supported him. Here’s Eoin…

The video is taking a while to sync within the post, but you can watch it on YouTube here.

We’re grateful to Fiona, and to Eoin, for sharing their experiences with us. Our hope is that everyone will receive the support they need to reach their potential, otherwise, to be blunt we’re talking about lives half lived. Surely we’re past that?

Day 67: The clients are revolting #107days

Day 67 was adopted by Amanda, pictured here with her daughter, Jazz.

Jazz&Amanda

Amanda is founder of The Open Nest and in this post she shares her own thoughts, feelings and experiences as a professional, as a mother, and as a supporter of #JusticeforLB.

When I was a social work student I specialised in working with groups of people who needed to access social care but were often voiceless or suppressed within the system. As with all those who seek state support these people were referred to as ‘clients’ of the services. This is actually where it began to irk me. Clients as a word suggests business. Not as is in ‘clients have a strong voice and will not be messed with’, but rather clients are one cog in the big wheel of the business and the huge industry of care that we seem to have developed in this country. By a twisted world upside down effect it seems those in need can now be quite comfortably viewed as a bit of a problem, a glitch or even a drain on the ‘care’ industry.

As part of my practice based learning. I devised a ‘Clients Committee’ model. The purpose was to facilitate an independent user led group made up of adults with learning disabilities (another label that now irks me seeing as I’ve met many social care managers who seem to find it harder to learn than their clients). Anyway, the dude ‘clients’ attended an adult training centre and once a week I would take their meeting minutes for them based upon their conversations around changes in the support services they felt were needed. A lot of the talk centred around rights to have relationships, to choose their own individual style and to have more funding for the meeting to get better sandwiches. Nothing changed. It was an ‘interesting’ experiment, a token gesture. It was still a shit sandwich.

After proceeding to work with ‘clients’ of women’s refuges, traveller sites, drug and alcohol projects and HIV services, I had seen enough. In almost every area of social care I saw the ‘clients’ often remain static in their position of powerlessness and unmet need whilst workers gained power, very often by being the agents of budget control and the keepers of the status quo.

Some things I have experienced in working practice, although seemingly small, stand out. I was once given the job of making sure ‘clients’ with HIV or AIDs who came into a drop in centre could access healthy and nutritious food. The budget to feed up to 12 clients per day was £12. I became a master at fresh vegetable and fruit shopping. One day the big bosses from the NHS were coming for a meeting. As well as my usual £12 for the ‘clients’ the manager of the project gave £50 that day for a meeting ‘buffet’. I felt furious. When I questioned this I was met with a wry smile (a manager’s special) and a response that patronised me as being a quaint but outdated revolutionary.

Incidents of this nature were not rare and led me to feel personally unable to work inside such systems. Subsequent academic study led me to analyse, once again, how certain groups of people are marginalised, although this time it was culturally through the mediums of the popular press and television.

Everything I experienced led me to a life changing decision to become an adoptive parent to a very young dude (whose mum was also a dude) and who needed some full on support and advocacy.

In that process my daughter and I both, like her birth mum, became ‘clients’ of the social services as well as the health authority. In the eyes of the care system I became just ‘mum’. Declawed and unprofessional. My daughter became a person talked about in her presence as if she were invisible and whose name they could never spell right in her correspondence no matter how many times she told them.

When Mencap were eventually wheeled in to support my daughter they covered the backs of the poor practitioners whose incompetence eventually caused her serious harm. Even a National charity for dudes is not beyond bending or editing the truth, of selling their ‘clients’ out if commissioning is at stake. And they are not the only ones.

There had been a gap of many years between my training to work with social care ‘clients’ and my becoming one myself. I thought things would have moved on and ‘lessons would have been learnt’. More fool me. Despite the annual reporting of abuses in social care settings and harm coming to clients of the health and social services being featured on news items and documentaries, poor practice, tokenism and budget led interventions seem still to prevail.

Some practice failures may be small but when on the receiving end they can be the proverbial straw. My personal ‘shit practice gong’ of this month goes to a health visitor who rang one of my family members at home to congratulate her on the birth of a lovely baby daughter and to arrange a hello visit. Would have been a thoughtful gesture if her baby hadn’t been still born the previous week.

But now to Connor. I didn’t know him or his family but I have felt personally touched by his appalling and avoidable death and the strength and bravery of his family and friends in the darkest of times.

Initially the shock was in hearing he had died. This shock became compounded by the response from Southern Health to his death and to his mothers grief. It is truly incomprehensible to me.

I cannot pretend to feel the grief or have any true understanding of what Connors family are going through. But I know I genuinely feel empathy, a sense of there but for the grace of god go all of us and a really huge feeling of anger.

My daughter was on the verge of being admitted to an assessment centre not very long ago and the conversations with me around this potential intervention chilled me to the bone. She would not be able to have contact with me initially nor could she take in her security pillow, her phone or any familiar objects from home. The inference from the start was that ‘we need to see how she is away from you because it’s probably some family or home issue that is the real problem”. I read with horror Mark Neary’s recent blog about his sons anxiety at being severed from his place of safety in the name of a professional assessment. But our children didn’t die.

I know there are great and emotionally intelligent expert professionals in both social work and health care and I know professional bashing is a hard stance to take in times of low resources and outsider aims at ‘criticise to privatise’, but how could Southern Health be so cruel.

You can’t buy or train in truth, empathy and remorse anymore than you can illicit forgiveness and understanding via a cold bureaucratic and funded PR fob off.

The response to this case from Southern Health bosses shows the emotional maturity of a small child who is denying they ate the chocolate when it’s clearly all around their mouth. I find it embarrassing.

The people who support Connor and his family are collectively angry. We don’t feel like being particularly polite or forgiving of the unavoidable death of a healthy young person through negligence and poor practice. This isn’t something that happens to all of us but the lead up to it, the ignorance and pseudo care that allowed it to happen is recognised by many of us in our experience of being a ‘client’ or the relative of a ‘client’.

Southern Health can accuse Sara of being difficult to handle, suggest she might perhaps move on now, infer that Connor was just another ‘client’ who sadly had an unfortunate accident, that those seeking justice for him and other dudes are akin to internet trolls, but it won’t wash. Its bigger than them. We are far too revolted and Sara’s strength as a campaigner in love and honour of her son means she is now leading what could easily become a significant and broader revolution in how society views, talks about and supports all dudes in this country.

I for one am living in hope of significant cultural change being instigated by this campaign. No matter what Southern Health do to discredit the integrity of Connor and Sara’s experience, no matter how much they cover their eyes, ears and especially their backs, it wont change that.

You still have time to get involved with the #107days campaign if you wish to join Amanda, and so many others, revolting for a better society. Next weekend, Sat 31 May, is the party night to end all party nights, and it would be great to see some of our online supporters in the flesh!

Day 41: A question of trust #107days

Today’s post is from Fiona who has a dude the same age as LB. Fiona raises her concerns for the future and asks how we can trust the NHS;

“I wanted to get involved in this campaign as it touched my heart and soul and my thoughts go out to Sara and family of Connor. This is my 18 year old son, who has global learning difficulties, epilepsy and autism as well as type 1 diabetes. Although we struggle sometimes, and some days are more challenging than others, I cannot comprehend how this tragic end to Connor came about while he was in the care of a unit specialising in care for vunerable adults. I would not leave my son unattended in the bath, privacy is one thing, but abandonment and lack of care is another. This is negligence which they were forced to admit only after an independent investigation.

How are we supposed to trust in the NHS to look after our vulnerable children and adults after this?”

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This is a huge question which  gets at the  heart of what we’re trying to achieve.

As we don’t have any answers right now, one small way forward may be to record those small ‘drops of brilliance’ that have made a difference.

A collection of brilliant drops may offer  ideas, thoughts or changes to what people do. The otherwise unsaid or invisible stuff.

 

Day 5: 107 stories from an assessment and treatment unit #107days

Yesterday we featured WiseGrannie who is a relatively new online voice to the discussions around care and support for people with learning disabilities. Today, we feature Mark Neary and his son Steven, both experts by (bitter/shameful/appalling) experience who have been at the front of the queue when it comes to generously sharing their knowledge and wisdom with others.

Steven + Mark Neary

Mark has a very personal reason for getting involved with #107days and #JusticeforLB:

Steven went away for 3 days respite on 30th December 2009. The following day I stupidly agreed to him being moved to an assessment and treatment unit. 3 days turned into 2 weeks and it finally took 358 days for him to be returned home. In his time in the hellhole, he was unlawfully deprived his Article 5 & Article 8 human rights. The scars are still there for him and me.

I’d like to keep assessment and treatment units in the news until they’re gone for good.

Mark has shared their experience in book form, if you’d like to read more then Get Steven Home and There’s Always Something or Other with Mr Neary provides the background. The titles alone speak volumes. For #107days Mark is sharing 107 stories from Steven’s time in an assessment and treatment unit. He started slightly ahead of us and so far has shared ten stories including Shoes and Beards and Bryan Ferry and Challenging Behaviour. I promise you will laugh and cry and shake your head in disbelief, it’s powerful stuff.

Just last week Mark has also shared two post on his personal blog that bear striking resemblance to LB’s family’s experience to date: A Smile, A Shrug, A Sob and A Stab and the follow up A Smile, A Shrug, A Sob and A Security Alert. It seems there is a pattern to what can be expected, suffice to say that sense prevailed in the end for Mark and Steven, and we take strength from them, and won’t be going anywhere until things change, permanently, for young dudes and dudettes, and until we have some Justice for LB.

We’re very grateful to Mark for sharing his and Steven’s experience with us through #107days. You can follow him on twitter here @MarkNeary1 and you can wish him a Happy Birthday for today too!!

Day 4: 107 lessons from dudes and dudettes #107days

One of the most encouraging things that has already happened as a result of #JusticeforLB is the number of new online voices. We know of at least three new blogs and many more twitter accounts that have been established to join the conversation around #JusticeforLB and some specifically as a result of #107days. For anyone who doesn’t blog I think its fair to say that for some it is a rather hard hurdle to jump initially. Who is going to read it? What if people don’t like it? Why would anyone care about what I have to say? Well let me reassure you if you’re considering it, every voice is valuable and the internet is a truly brilliant way to connect with others, who are genuinely interested in your experience and views, and if they aren’t they’ll not hang around, but that’s ok too. Not saying anything means you play it safe, but your voice isn’t heard. A real loss, everyone has something worth saying.

Some of these new online voices are sharing, quite brilliantly already, experiences and wisdom gleaned from many years working with, living with or sharing lives with dudes and dudettes. One of these new voices is Wise Grannie, you can connect with her on twitter @WiseGrannie or read her blog http://WiseGrannie.wordpress.com.

WiseGrannie

WiseGrannie describes herself as:

Possibly made every mistake in the book as teacher, mother, daughter, wife, trainer, friend, carer and colleague, but I did try to be kind.

and gives her reason for blogging as:

Hoping to help Justice for LB by blogging the good, funny and surprising things I learnt from all the young Dudes and Dudettes I foolishly imagined I was teaching (long ago when the world was young).

WiseGrannie has committed to blogging a story a day and so far she has had us roaring with laughter and sniffling back a few tears, they are definitely worth a read. Start here for her first post that provides context: To begin at the beginning. Can’t wait to see what more she has to share.