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Rightful Lives

This is a call to arms. It’s a klaxon call to all potential social care ninjas. It’s an emergency call to the Human Rights batphone. We need your input.

A few weeks ago I wrote a blog calling for a reframing of the social care narrative to be about the human rights of people with autism and/or learning disabilities. Most discourse around social care overlooks the human rights act completely. Look at most care plans; look at the media reporting of social care stories; even look at court judgements where a person with learning disabilities is at the heart of the case – the human rights act is barely mentioned. Since writing the blog, there has been two major new stories: Danny Tozer’s inquest after he died in a Mencap supported living facility and the NHS England’s commissioned LeDeR report into the deaths of people with learning disabilities. I’ve read many reports on both events and cannot find a single mention of human rights. Danny’s human rights counted for little both in his life and his death, whilst the LeDeR review is dripping with human rights violations but they don’t warrant a mention.

The blog seemed to strike a chord and two actions have happened since. Firstly, Alicia Wood and myself went to a meeting with Liberty and the Equality & Human Rights Commission (EHRC). One of the outcomes is that their legal teams are currently looking into bringing a group action for human rights abuses either against a commissioning body or a provider. Getting a judge to examine such a case and to deliver a ruling could go a long way in shifting the narrative and would send a very strong message that the law cannot be ignored just because the person has a learning disability and/or autism.

The second action, and this is where you come in, resulted from a meeting last week of families and concerned professionals. We decided to hold a event that will focus solely on the human rights of people with autism and/or learning disabilities. The vehicle for this will be an online exhibition which will be held for a week from Monday 24th September and will be called “Rightful Lives”.

The exhibition will have a number of themed rooms, each based on a specific article from the Human Rights Act, which appear to us where obvious violations are taking place. These will be:

  • Article 2 Room – The right to life.
  • Article 3 Room – The right to freedom from torture and degrading or inhumane treatment.
  • Article 5 Room – The right to liberty.
  • Article 8 Room – The right to a private and family life.

There will also be rooms covering Protocol 1 Article 2 – The right to education and a room that shows how positive a person’s life can be when their human rights are respected.

We need your creative input to build the content of the exhibition. We don’t want to be too prescriptive about content because we are open to any suggestion. However, some obvious suggestions so far include: photos, stories, artwork, films, recordings, craftwork, media content, blogs… Another suggestion is to have a section that includes correspondence from the State that demonstrate disregard of the HRA. There is already plenty of material out there on social media, so we may contact you for permission to include already published material. We also want contributions from everyone working in social care – social workers, academics, psychiatrists, AMHPs, lawyers, commentators, care workers, providers, commissioners, charities, anyone with experience of working with people with learning disabilities. We just ask that you put your creative thinking caps on and consider what your contribution to the Rightful Lives exhibition can be.

Needless to say that we want lots of contributions from people with autism and/or learning disabilities. We’ve already received some cracking content but we would really like more.

To submit content for the exhibition, please email us at – exhibition@rightfullives.net . We will send you a link to a Dropbox to upload your content and a consent form.

You can follow the progress of the exhibition on Twitter at @RightfulLives or the hashtag #RightfulLives or on Facebook at #RightfulLives.

We appreciate that in trying to shift the focus to the human rights act is a gamble. It may work; it may not. But we are determined to give this everything we’ve got and would love as many people as possible to respond to this call to arms. It’s worth a try.

Over to you Ninjas…..

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Death Duties

It’s been over a week since NHS England snuck out their LeDeR report and I’m still consumed by the horrifying statistics it revealed. In my darkest moments, I find myself echoing Kenneth Williams’s last words – “Oh, what’s the bloody point”. The utter powerlessness I find unbearable.

This time last year, I fell into an existential void. It lasted all the summer and I only started to emerge from it towards the end of September. It wasn’t depression. It was too Schopenhauer for that. I carried on doing my usual stuff but spent an inordinate amount of time going back to bed. To sleep. To eat. In hindsight I can see that it was a collection of things that triggered the void. Steven was needing less of me. It challenged the theory that I’ve had for the last 20 odd years that I’ll be Steven’s hands on, 24/7 carer until the day I die. I also published my book: a diary of 2016 & I’d realised that I wouldn’t be writing anything like that again.

But the biggest tipping point into the void was that I’d finally completed my “death plan”. It took months of emotional upheaval trying to assemble a document (100+ pages) that would ensure Steven could carry on living his life as he’d want to, after my death. It wasn’t a totally bad experience. I’m a geek who loves a list, so compiling lists of Steven’s favourite cover versions held a warped pleasure to my anal mind. It was only on completion of the plan that the sheer futility of the exercise hit me. I can rally the troops. I have rallied the troops. But at the end of the day, Steven’s future will determined by a social care professional conducting a best interests assessment and my plan may not be worth the paper it’s written on. After all, nobody is going to listen to Steven and his ideas on how he wants to live his life.

Anyway, it was a combination of all these things that led to the void opening up and this week, I could sense it reopening with an impending sense of doom. I woke up one morning having done some maths in my sleep. If Steven is going to die 25 years early and before he hits 50 (even though he may not be ill) then I will have to live until I’m 81 so that I can bury him. So that I can prevent my death plan ending up in some social worker’s confidential waste bin. The irony is that at the moment Steven receives excellent care and he may buck the LeDeR trend. He’s living a good life that could end abruptly, long before he dies if his current carers, myself included, aren’t around to ensure he lives. His future is as fragile and random as that.

All week long I’ve been having conversations about death. But those same conversations are about living too. I had a discussion with my brother in law who’s had a recent health scare and he remarked how infrequently he visits his doctor. I’m the same. I’m 59 and I’ve only recently had my second over 50s annual health check. It doesn’t occur to me unless I’m feeling unwell. I think it’s my upbringing and my class. Doctors were seen as very important and their time must be wasted on trivial ailments. Should I be more proactive about Steven’s health? About mine? The other day I had a conversation with two guys at the gym about their use of steroids. They were fully aware of the health risks but felt they were manageable. I found myself being surprisingly non judgemental. They were living their lives. You can’t knock that. Then I had a session with a client who is 74 and he announced he’s lost over a stone in weight in just over a month. The fear was there but then he talked about all the meals he’s been skipping whilst he’s been climbing trees, erecting a summer house in his garden. As the session progressed, the death fear didn’t dissipate but the room was full of the sound of him living.

This is all very random but that is where my head has been over the last seven days. I was introduced to death fairly early on. My mother died when I was 16 and a year later one of my closest classmates died of a brain haemorrhage. Events like those tend to focus the mind and set something up for life. I even had a short lived phase in my early 20s where we would have Joy Division parties and sit around predicting our own deaths. The LeDeR report has taken me to a familiar place but it carries a bleakness that feels very new. And at the moment, insurmountable.

Steven lives. He hasn’t “had his time” yet. Whilst I was chatting to Wayne about cancer fears, Steven was having a shit in the toilet. He was singing The Proclaimers, “I’m On My Way” at the top of his voice. I think he truly believes that he’ll have Al Jolson sing, “I’m sitting on top of the world”.

And that thought has me laughing out loud, bursting with love and sobbing my soul out.

The LeDeR of the Gang

Yesterday NHS England published it’s report into the deaths of people with learning disabilities. It was commissioned following the Mazars report that looked into the premature, preventable deaths of people with learning disabilities whilst in the care of Southern Health Foundation Trust. None of this would have happened without the tenacity of Sara Ryan and the Justice for LB campaign.

NHS England don’t want anyone to see the report. They held back publication until 8am yesterday, the day after the local elections and the day before a long bank holiday. They refused to arrange a press conference and refused to put anyone up for the BBC and other media interviews. The report is only 36 hours old but already the link to the content on the HQIP (No, I don’t know who they are either) website has changed at least twice. I’ve posted the current link below but it will probably change again:

https://www.hqip.org.uk/resource/the-learning-disabilities-mortality-review-annual-report-2017/#.Wu29kaQvwdU

You will have noticed if you’ve clicked on the link that you have to give your personal details before you can download a copy!

The headlines of the report are grimmer than grim:

Women with learning disabilities are likely to die 28 years earlier than their non disabled peers. Men with learning disabilities are likely to die 23 years earlier than non disabled men.

1131 deaths were referred to the programme but lack of resources meant that only 103 of those deaths were reviewed. There is no timescale as to when the other 1028 deaths will be investigated or those that will be referred after the reports publication.

Of the 103 reviews, 13% of deaths were found by the review team to be down to:

  1. Neglect or abuse.
  2. Organisational dysfunction.
  3. Delays in care or treatment.
  4. Gaps in service provision.

Anyone who has followed the inquests into the deaths of Danny Tozer, Oliver McGowan, Connor Sparrowhawk & Richard Handley won’t be surprised by these revelations. The data is profoundly shocking but the apathy of the State and the service providers and the lack of care on offer runs through the inquest evidence like chilling veins.

The 103 reviews have highlighted three areas for learning:

1.Inter-agency collaboration and communication.
2.Awareness of the needs of people with learning disabilities
3.The understanding and application of the Mental Capacity Act (MCA).

No shit Sherlock. Anyone from the widest periphery of the social care world could have identified those three areas. And am I the only one who finds the “awareness” item really offensive. We need to be aware of potholes in roads, lumps in our testicles. Do we really need to be reminded to be aware of other human beings?

Sara Ryan appeared on the BBC Breakfast sofa and shook the truth stick at Charlie and Naga with a righteous ferocity. She gave us the most distressing but powerful and truthful statement of the day: “Anyone who is classified as having a learning disability must now be seen as having a life limiting condition. They are not sick”.

The contemptuous behaviour of NHS England since yesterday validates the truth that Sara uttered. They do not care. The State and its laws do not touch learning disabled people. They are less than human so shouldn’t expect humanity.

It took me several attempts to read the LeDeR report. I got 2/3rds of the way through and had this overwhelming desire to give Steven a hug. I don’t normally see him on Fridays, so he was a bit startled when I turned up, interrupting his Men Behaving Badly marathon. I thought about his diagnosis of a¬†nonalcoholic steatohepatitis liver three years ago and the complete disinterest of most of the professionals to this life threatening condition. (“Would you like another referral to the dietician?”) Medication given to keep him quiet and stop him singing when he was in the Unit caused a 15 stone weight gain. He nearly died and isn’t out of the woods yet.

One last horror thought hit me last night. I was listening to some music and the Blur track, Country House came on. It took me back to the year it was released, 1995, the year Steven came to live with us. Then, Bang. 23 years ago. Everything that has happened in our lives since Country House never happened.

It couldn’t have done. We are learning disabled.

We are dead.

 

 

Why MCA?

My apologies but an old familiar bee has been buzzing in my bonnet again. I know I’ve turned into one of the great bores of England on the subject but it’s a pesky bee and I don’t want to get stung. What is the bloody point of the Mental Capacity Act?

Commentators always talk about the MCA being a great piece of legislation. They focus on its aspirational qualities. Words like “empowering”, “liberating” and “human rights based” are common adjectives applied to the Act. I agree that on paper, the MCA looks like it encapsulates all those positives but what price those positives if they remain on paper and are seldom translated into people’s reality?

My bee became reactivated during Danny Tozer’s inquest. The inquest was a two week examination into how Danny came to die in a Mencap supported living facility. All the evidence revealed that Danny didn’t live an empowered life. There was nothing liberating about life in this Mencap warehouse. It was a regime that was service led. Apathy ruled. It took an external consultant to remind the staff that they needed to show “kindness” and “interest” in the residents. The Mental Capacity Act doesn’t even get a foot in the door in these types of regimes.

During the inquest, the Mental Capacity Act was mentioned just once. Totally staged and used by Mencap’s barrister to fit his narrative for the fortnight – whatever happened, it was always somebody else to blame. Clearly coached, the Mencap witnesses either suffered the most alarming case of mass amnesia (the York outbreak) or they woefully attempted to shift the spotlight elsewhere. In the solitary mention of the MCA, the barrister asked one of the Mencap managers whether they had considered the deprivation of liberty safeguards. The manager responded that it was the responsibility of the City of York council.

Screech. No it’s not. Mencap were the managing authority. The deprivation was taking place in a Mencap home. It was down to Mencap to start the DoLS ball rolling. And that was that. The MCA’s sole appearance of the fortnight. In the cast list of the inquest, the MCA appears just below “man in hat at petrol station”. The barrister and the manager were playing a clearly rehearsed game. They were pissing all over Danny and the legislation to serve their own ends. What was just as shocking was that nobody else picked them up on it. None of the other barristers challenged their presentation. The coroner didn’t interject with “Hang about Joseph. You’ve got that a bit arse about face”. I don’t believe they were all playing a game. It was simply a display of total ignorance. The key, empowering legislation a complete irrelevance to Danny’s life and death.

If the MCA made a single solitary appearance, the Human Rights Act didn’t get a look in at all. We shouldn’t be surprised at this omission. To Mencap, Danny wasn’t seen as human so his human rights are unlikely to figure in his care arrangements. But we’re in a very grim place when the two foundation stones for a learning disabled person’s life are transparently missing. The law doesn’t feature at all for all the people tasked with giving Danny a fulfilling, meaningful life. How can this be? Is there any other area of law that is so routinely ignored? Is there any other group of citizens where the law has so little impact on their life?

As the inquest reached its conclusion, I found myself discussing these concerns with a leading human rights activist. He reminded me that, seven years on, Steven’s case is still the only published judgment that brings together the Mental Capacity Act and the Human Rights Act to really serve the citizen. I find that dearth of cases really shameful. I also get very embarrassed when Steven’s case is called a “landmark case”. For me, a landmark case opens doors for others to follow. Steven’s case opened the door for a nanusecond and then was slammed shut and bolted the minute he walked through. That’s not a cause for celebration.

I was told that Steven’s case represents “hope”. I’m afraid that’s a bit too random for me. We need more than hope. We have more than hope – we have legislation, albeit nobody is interested in it. I still hold out hope for the Human Rights Act. There’s a whisper that there may be another 7 Days of Action campaign soon and my hopeful wish for any campaign is that the narrative can shift and we start seeing the human. With rights.

But we haven’t got long. We’re living in pretty bitter, intolerant times and post Brexit it’s probably going to get nastier. Already hostile environments will become more hostile and the learning disabled are convenient Aunt Sallys for that hostility.

I’m just not sure whether the MCA has any traction in that sort of world.

Scrolls

I had one of my recurring dreams last night. Although the setting and the plot changes, there is always a familiar encounter that carries an important message.

In last night’s dream, I was attending a meeting at a classic town hall. I was in the grand council chamber and browsing the artefacts before the meeting commenced. On a side table sat a candlestick. But as I looked at it, I noticed it was actually a scroll. And I instantly recognised the scroll. It was one that I was charged with delivering over 800 years ago. I picked it up to read it and a council official intervened and said, “It’s not yours Sir. Can you put it back please”.

I know there is a key message in there but my reaction on waking was – “Give me a break. Not another sodding scroll”.

Yesterday I went with Alicia Wood to a meeting with the Equality & Human Rights Commission and Liberty. We were seeking their input (backing?) into the ATU scandal and wanted their view on focusing on the human rights breaches in being detained. The meeting went astonishingly well. We talked about the EHRC taking a group action either against a particular provider or against a commissioning body. For once, the families wouldn’t have to take the lead. The commission would bring the case. We talked about them carrying out an investigation into the human rights abuses. That is a possibility. They asked about whether there would be another 7 Days of Action campaign as they felt the previous campaigns had been very effective.

And they asked what the next steps are going to be with LBBill. It was quite a shock. I’ve never seen the Bill as being dead but have been at a total loss about how to move it beyond the brick wall. Hearing their enthusiasm for LBBill, it was like – “Whoosh. Oh hello Bill. You’re back again”.

My gut tells me that the scroll has something to do with LBBill. Or perhaps vise versa. It’s an ancient scroll. I suspect it may go back to Magna Carta. I remembered at the meeting that the EHRC made an independent submission in Steven’s case, seven years ago. We are connected through time.

I couldn’t sleep last night as I felt too buzzy after the meeting. I phoned my friend and she reminded me that LBBill doesn’t have ego attached to it. It’s never been about brand promotion. It’s not about the careers or image of any of the contributors. We and the 100s of people who fed into the Bill are just a channel.

That’s why LBBill refuses to die.

Wanking

Yesterday was the first day of the two week inquest into the death of Danny Tozer in 2015 in a Mencap supported living home (although going from the evidence so far it looks like another rebranded care home designed to save on care costs by claiming housing benefit).

I went to bed in a rage and woke up this morning in the same state. There is much to rage about. The inquest was only on the first morning yet Mencap’s barrister started dishing out the parent blame during the evidence of both Rosie and Tim Tozer. It is to be expected but it is harrowing to witness. The afternoon session consisted of the evidence of two social care managers from York council and their apathy left one’s heart in one’s boots.

What has really got to me though is the way the Mencap barrister has made such a big deal about Danny’s “private time”. Like a dog with a bone he has questioned all four witnesses about private time. I still don’t understand his agenda. Are Mencap really using a resident masturbating as a get out clause for their appalling care?

Private time is social care speak for masturbation. Some commentators have said that it’s an embarrassed euphemism. I don’t agree. To me, it’s another thoughtless euphemism that’s designed to dehumanise the person. A language that only applies to “them” because “they” are not like us. It’s from the dictionary of phrases like: placement (home), community activity (swimming), personal care (having a shower). A Twitter friend taught me a new one today – self travelled. It means going by bus.

Sex is very problematic for social care practitioners. It’s likely to be filed under the heading “challenging behaviour”. Or worse, and I have seen this often, “inappropriate behaviour”. Having a wank needs to be managed. It needs to be discussed at the multi disciplinary meeting. It needs risk management plans drawn up. Even when someone is living in their own home. On paper, Danny was living in his own home but the needs of other residents had to be factored into his private time plan.

It felt uncomfortable discussing this on social media. But I had to keep reminding myself that it’s not Danny’s sex life being discussed. It’s the complete failure of social care to recognise wanking as a normal activity. It’s also about the shameful tactics of the “voice of learning disability’s” barrister to weaponise this normal act to attack the family and to paint a picture of Danny as problematic.

One is left with the feeling that the State (and I include Mencap in that) has no idea in how people live their normal lives. Learning disabled people are there to be patronised (“Ah. Bless”). To give the State it’s sense of importance and to give the impression that it is offering something of value, the dehumanising of learning disabled people becomes collateral damage. And in case I’m accused of over reacting, language like “private time” is the drip drip drip of the dehumanising process.

I’ve tried to imagine what Steven would make of the concept of private time. Rather in the direct way he dealt with the social worker’s enquiry into whether he’d been out on his community programme, I imagine the conversation going like this:

“Hello Steven. Have you been engaged in private time today?”

“No. I’ve been wadgering. Now I’m going to have a Whispa”.

How To Make A Life

I often feel a bit teary when I get back to my flat on a Sunday evening after spending the weekend with Steven. If the weekend had been problematic, I feel sad that the precious time had been spoiled. Or, if the weekend has been pretty damn perfect I get a bit emotional because … we’ll, because the weekend had been pretty damn perfect.

This weekend has been pretty damn perfect and I’ve been trying to understand why. The other day, one of my clients threw into the session, “I don’t think I was ever taught how to make a life”. What ensued was an existential discussion on what “making” a life actually means and can you be taught how to do it.

I marvel at how Steven makes his life. To an outside commentator it may look a pretty small life. But to someone who loves him, I hear a noise he makes. It’s hard to describe in words. The best I can come up with is it’s like a purr. A purr of total contentment. We spent quite a bit of time doing what Steven calls a “two songs” compilation tape. It’s cover versions basically. I brought him some cover versions CDs for his birthday. Some absolute corkers – James Blunt doing I Guess That’s Why They Call It The Blues and Kylie Minogue doing Bette Davis Eyes. On the tape yesterday I put on two versions of Just The Way You Are. First Billy Joel, then Barry White. Steven loves the Barry version. “Dad – do Barry White” he asked. This involves a vocal and physical impersonation. So I affect my most gravely voice and mop my sweaty face with a hanky. This brings about ” the purr”. And Steven skips off into the hall, announcing “Don’t you just love Barry White”.

Music does make Steven’s life. I always announce I’m going off to bed about 10pm because if I didn’t, Steven would have me up all night chatting about this, that and the other. He goes about his business for another hour and then announces to the support worker that he is off to bed too. On Saturday night, I heard him say, “Michael. I’m off to bed now. And I’m going to be singing some Liam Gallagher”. And for the next hour or so, you can hear from his bedroom – “Maybe, I don’t really want to know…” That makes me and Michael purr.

Is this making a life? I guess so. It definitely feels like living a life. It requires some outside input (i.e. me buying the James Blunt and Kylie CD) but I don’t think it can be taught. It’s too spontaneous for that.

Anyway, enough of the philosophy. Get those hankies out and swallow some gravel:

“Tonight Matthew. I’m going to be….”