Thursday 18 May 2017

The new restraint: old chains in new guises

In my last blogpost I talked about what the research evidence does and doesn’t say about the lives of people with learning disabilities living in different kinds of places. I also talked about how the research evidence hasn’t kept pace with the corporatized world of speculative 48-bed ‘supported living’ establishments and other such ‘developments’.

[Odilon Redon, 1916, White vase with flowers]

I’ve been hearing quite a lot about these sorts of ‘supported living’ arrangements, what people’s lives are like within them, and what is being done to people to cut costs in the disingenuous names of ‘improving people’s quality of life’ and ‘reducing their dependence’. I’ve also been thinking about how Hillingdon Council have assessed Steven Neary as being subject to a ‘deprivation of liberty’ because he is consistently supported to go about his daily life.

Historically, one very powerful prism that has been used to understand what services are doing to people is institutionalisation. This is derived from the work of sociologist Erving Goffman in the USA, who in his 1961 book Asylums defined a total institution as “A place of residence and work where a large number of like-situated individuals, cut off from wider society for an appreciable period of time, together lead an enclosed, formally administered round of life”. Features of institutional routines include a complete breakdown of usual distinctions between work, play and sleep, so that all these things happen under one roof under a single authority; block treatment of residents; routines which act to depersonalise residents; rigid institutional routines; and maintaining a social distance between residents and staff.

In the UK in the 1980s and the 1990s quite a lot of research begun by Norma Raynes and colleagues investigated the extent to which people in long-stay institutions, and various community-based types of housing for people with learning disabilities, were subject to these institutional routines. Although long-stay institutions were always (unsurprisingly) institutional, and smaller, community-based housing services were on average less institutional, being in a small supported living service did not guarantee that your life wouldn’t be constrained by the kind of institutional routines listed above.

Looking at the circumstances people are in now, I think there’s a lot to still be taken from the institutionalisation way of thinking about things, but that applying it wholesale allows service providers and commissioners to wheedle their way out of the consequences of what they’re doing to people (‘Of course we don’t make everyone have a bath at the same time – people have choice about that’ etc etc).

Instead I’d like to propose that what we’re talking about here are forms of restraint. We know people with learning disabilities (both inside and outside inpatient units) can be subject to mechanical restraint (being placed in clothing, chairs etc that restrict people’s movement), physical restraint (being restrained by other people), seclusion (being locked in a room on your own), and chemical restraint (being prescribed unnecessary antipsychotics as a method of sedation). I think we can also talk about restraints on freedom. These might not be acknowledged as such, but these restraints can be seen in their impact on people’s lives. These restraints on freedom took certain forms in big institutional services, but very similar restraints on freedom are cropping up in new guises for people with learning disabilities today.

For example, Goffman talked about people in institutions living their lives under one authority. If a person with learning disabilities is in a ‘supported living’ service where the housing and support provider organisations happen to be the same or are closely linked, in practice this person is living their life under one authority. How easy would it be for this person to move house, or sack the organisation supporting them to find someone better? And if this person doesn’t have a job (highly likely), has very little money to spend, and gets very little support to do anything during the day that they want to do, these restraints add up to something possibly worse in some ways than an institution – from work, play and sleep under one authority to no work and precious little play, leaving a person effectively trapped in their home with nothing to do. A restraint on freedom.

Goffman also talked about institutions involving large numbers of like-situated individuals under one roof. These aren’t people choosing to live together under one roof because of shared liking, interests or ideals. They are people made to live under one roof due to decisions made by an external authority, on the basis of a bureaucratically defined ‘need’. Again, a 48-bedded ‘supported living’ complex, no matter how bijou, is doing exactly this, imposing severe restraints on people’s freedom to determine where they live and who they live with in living spaces that are private. However, these restraints can also apply in much smaller places too, if people have no say in which neighbourhood, village, town or city they live in, the style of their home, and whether they want to share with anyone, on what terms, and who the anyone is.

In terms of restraints on freedom described as institutional routines when people lived in big institutions, no doubt there would be strenuous objections from service providers and commissioners if I were to suggest that people with learning disabilities are subject to block treatment and rigid routines, although initiatives like the excellent Big Bed Time Audit done in Hertfordshire and Calderdale show that block treatment is alive and kicking in services for people with learning disabilities (soon to be published, but some tweets on it can be found here).

But what if people with learning disabilities in a supported living complex all have to be in their flatlets/rooms at a particular time at night? What if everyone supported by a particular service provider, across many different houses, all have to do the same 'work experience'? What if everyone with learning disabilities has to use their 'personal budget' in the form of a pre-payment card, only usable with a restricted set of 'approved' services? These are restraints on freedom in the form of block treatment, even if they are distributed across all the services provided by a particular organisation or across everyone living in a particular local authority.

The same is the case with rigidity of routines. What if people only get any support to go out and do stuff at fixed hours and days of the week, meaning that people have to leave a gig at 9pm (see Stay Up Late’s recent survey on this), or they don’t get to see a film at the cinema they want to because a support worker isn’t available when the film’s on? What if people get a home visit involving personal care, at a particular time, that isn’t long enough to get people feeling like they’re ready for action? For me, these are restraints on freedom in the form of being subject to rigid routines imposed by others for bureaucratic convenience, in new forms that are cloaked and officially deniable.

Perhaps most frightening to me is the way that services are increasingly being set up in ways that depersonalise people with learning disabilities and set up an ever increasing social distance between people with learning disabilities and others supposed to be there to support them. The role of people as supporters is being systematically eroded and being replaced by various forms of remote surveillance in the names of assistive technology or telecare.

Look at the ‘Just Checking’ website for one example of such technology being used in an increasing number of ‘supported housing’ services across England – there are many others too. Sleep-in staff are being replaced by ‘Just Checking’ technology, which as far as I can tell records whether people are opening or closing doors at night or are getting out of bed, with one Just Checking member of staff remotely keeping an eye on all this information from multiple houses. Quite what pattern of door opening and closing would merit an intervention, what this intervention would be, and what would happen if two people in different houses opened their doors inappropriately simultaneously, is unclear. As far as I can tell, I can’t see any evidence presented in the case studies on the website that people with learning disabilities prefer Just Checking to being able to talk to someone, or that it improves the lives of people with learning disabilities in any tangible way. There is lots of detailed evidence on cost savings, however. The front page of the site sets up the extreme depersonalisation and social distance involved – your options are ‘For A Loved One’ or ‘For Care Professionals’ – a ‘For You’ option doesn’t exist.

And how does a person with learning disabilities ask for help, or have someone to chat to if they’re worried about something? How do people have secure, ongoing relationships with people supporting them, to find out shared interests, do things together, grow and develop as people? To me this increasing social distance and depersonalisation are severe restraints on people’s lives, by not providing the human contact and respect that everyone needs to make the most of their lives.

Taking these together, I was thinking about Mark and Steven Neary, and how Hillingdon has decided that Steven’s excellent support to live the life he wants and to support him in growing and developing as a person constitutes a deprivation of liberty. Like Mark, I think it’s the exact opposite. Taking away Steven’s home, forcing him into some ‘supported living’ service with people he doesn’t know, taking away the people who know and care about him, would be subjecting him to severe restraints on his freedom.

Wherever people are living, I think a crucial test for any organisation commissioning or providing support is the extent to which their practices are acting as restraints on people’s freedom, in the ways I've tried to describe above and in other ways too. These restraints need to be broken just as much as other forms of restraint. If people were not being subject to such restraints, you would expect to see variation and diversity in how a population of people with learning disabilities are living their lives, as they become the authors of their lives rather than having the book of their lives written by someone else. Sounds good to me.

35 comments:

  1. An excellent post, Chris. I have also been thinking about Foucault, the disciplining of self which comes from subtle messages about not getting into sexual relationships, for example, or not having children. He saw this as the most effective form of social control, and it is alive and kicking for people with learning disabilities

    ReplyDelete
    Replies
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    ReplyDelete
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  12. Am pela, thanks to Dr Osaze who cured me of fallopian tube blockage and infertility. My marriage was on the verge of collapsing, because I was unable to bear a child for my husband. Until I came across Dr osaze's recommendation on line, and I contacted him. And he administered his herbs on me. I now have a child I can call my own. In case you want to contact him for a similar problem, or all other issues, you can reach him through his email:
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  14. Am pela, thanks to Dr Osaze who cured me of fallopian tube blockage and infertility. My marriage was on the verge of collapsing, because I was unable to bear a child for my husband. Until I came across Dr osaze's recommendation on line, and I contacted him. And he administered his herbs on me. I now have a child I can call my own. In case you want to contact him for a similar problem, or all other issues, you can reach him through his email:
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    ReplyDelete
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  16. Am pela, thanks to Dr Osaze who cured me of fallopian tube blockage and fibroid with his herbal tuber cleanser. My marriage was on the verge of collapsing, because I was unable to bear a child for my husband. Until I came across Dr osaze's recommendation on line, and I contacted him. And he administered his herbs on me. I now have a child I can call my own. In case you want to contact him for a similar problem, or all other issues, you can reach him through his email:
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    ReplyDelete
  17. ALL THANKS TO DR WILLIAMS

    his product is by far the best plan for treating fibroids naturally...the practical step by step instructions and the detailed information regarding the real cause and how to treat uterine fibroids were a real eye opener. I started dr williams medication after intense bleeding and pain which occurred during one of my rehearsals (I am a professional violinist).I was later that week diagnosed with 2 medium sized fibroids which placed an enormous pressure on my bladder. I was advised by 3 different doctors to undergo surgery to remove these fibroids as I was told that there was nothing I could do to shrink or stop their growth. Luckily, I ran into dr williams by accident as I was searching for information on the net regarding my condition. I was so relieved to have found that surgery was not always the answer, that it can be dangerous and that uterine fibroid can return even after surgical intervention. In less than 4 weeks of taking dr williams herbal portion and following his instruction, both of my fibroid had shrunk by 100% and the second ultrasound taken 7 weeks after I began taking dr williams medication, had shown that both of these were completely gone. I also my periods became regular. and now am three months old pregnant, you can contact his email address on drwilliams098675@gmail.com for advice and for his product.

    ReplyDelete
  18. All thanks to dr onokun He helped me with a fast cure to fibroid and infertility,and the size of it was .7cm, Then I started taking the medication for only one month, and now am completely cured from it. I was able to make it without any surgery, now I can live like every normal human and I can eat any food of my choice If you need such help, contact him via mail on dronokunherbalcure@gmail.com or whatsapp +2349064844957 for advice,i hope this also help some one out there.

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  21. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM FIBROID.
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  22. I am Chirag, from Orlando u s a, my wife was diagnosed with fibroid for 6 years, she lived in pain with the knowledge that she wasn't going to ever be well again without surgery, i contacted so many doctors on this issue,and she have use so many western drugs prescribe by various doctors and all was no avail, because she was determined to get her life back, one day i was researching information about fibroid on internet and i saw a post about Mrs Kate thanking Dr Williams who cure different manners of diseases, including fibroid, I contacted him via email and made purchase of the fibroid herb, i received the herb through DHL within 3 days, when i received the herb my wife applied it as prescribed and she was totally cured of fibroid within 4 weeks of usages,and on thin now she have never experience any symptoms of fibroid again,few days later she went back to see her doctor and he confirmed she was completely cured from fibroid, am so happy now, You do not have to suffer more just contact him for his medicine on drwilliams098675@gmail.com he will definitely put an end to that fibroid problem of yours.

    ReplyDelete
  23. I felt so awful when I was diagnosed with fibroid . I felt like my life was ruined since surgery was the only solution. Upon all of my constant research, I stumbled upon Dr Williams blog and articles of his good work that have been published. YOU ARE AMAZING. You have given me hope. This fibroid have cause me so mush pain that my life was deteriorating.Dr Williams You are so courageous and I don’t know if I’ve ever looked up to someone so much. Being famous for writing is my dream and I also have always wanted to make a difference in the world somehow. You are doing both and I think its the deepest thing ever. The world needs people like you to end the fibroid stigma. Never stop being you and thank you for being a voice for us all,you can also email him on drwilliams098675@gmail.com for his product

    ReplyDelete
  24. As a sign of gratitude for how my wife was saved from fibroid, i decided to reach out to those still suffering from this.
    My wife suffered from fibroid for more than 20 year of marriage after our first son and it was really tough and heartbreaking for me because she was my all and the symptoms were terrible, she had irregular and painful menstrual flow and the size of it was 5cm, and she always complain of stomach pain. we tried various therapies prescribed by our neurologist but none could cure her. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and she left the contact of the doctor who had the natural cure to fibroid. I never imagined fibroid has a natural cure if not surgery not until i contacted him and he assured me my wife will be fine. I got the herbal medication he recommended and my wife used it as instructed by Dr Williams, and in one months time we went to the hospital for scan and the doctor confirmed that there is no trace of fibroid and now she is fully okay, even up till this moment she is so full of life. fibroid has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get his medication.

    ReplyDelete
  25. Am pela, thanks to Dr Osaze who cured me of fallopian tube blockage and fibroid with his herbal tuber cleanser. My marriage was on the verge of collapsing, because I was unable to bear a child for my husband. Until I came across Dr osaze's recommendation on line, and I contacted him. And he administered his herbs on me. I now have a child I can call my own. In case you want to contact him for a similar problem, or all other issues, you can reach him through his email:
    drosaze39@gmail.com or call him on +2347089275769

    ReplyDelete
  26. I felt so awful when I was diagnosed with fibroid . I felt like my life was ruined since surgery was the only solution. Upon all of my constant research, I stumbled upon Dr Williams blog and articles of his good work that have been published. YOU ARE AMAZING. You have given me hope. This fibroid have cause me so mush pain that my life was deteriorating.Dr Williams You are so courageous and I don’t know if I’ve ever looked up to someone so much. Being famous for writing is my dream and I also have always wanted to make a difference in the world somehow. You are doing both and I think its the deepest thing ever. The world needs people like you to end the fibroid stigma. Never stop being you and thank you for being a voice for us all,you can also email him on drwilliams098675@gmail.com for his product.

    ReplyDelete
  27. I am Chirag, from Orlando u s a, my wife was diagnosed with fibroid for 6 years, she lived in pain with the knowledge that she wasn't going to ever be well again without surgery, i contacted so many doctors on this issue,and she have use so many western drugs prescribe by various doctors and all was no avail, because she was determined to get her life back, one day i was researching information about fibroid on internet and i saw a post about Mrs Kate thanking Dr Williams who cure different manners of diseases, including fibroid, I contacted him via email and made purchase of the fibroid herb, i received the herb through DHL within 3 days, when i received the herb my wife applied it as prescribed and she was totally cured of fibroid within 4 weeks of usages,and on thin now she have never experience any symptoms of fibroid again,few days later she went back to see her doctor and he confirmed she was completely cured from fibroid, am so happy now, You do not have to suffer more just contact him for his medicine on drwilliams098675@gmail.com he will definitely put an end to that fibroid problem of yours.

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  28. Who would have believed herbal medicine could cure FIBROID? I suffered fibroid for a long time and getting pregnant was a problem, I had pelvic pain, heavy menstrual bleeding even hospital could not help. Until I read about doctor Uduehi online, I contacted him for help and behold I was cured. I have gone for test severally at the hospital and was proved negative which means I am free from fibroid and I am also pregnant at the moment. You too can be cured if having such problem. His contact: uduehiherbalcare@gmail.com phone/WhatsaPP: +2347084878384

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  29. ALL THANKS TO DR WILLIAMS

    his product is by far the best plan for treating fibroids naturally...the practical step by step instructions and the detailed information regarding the real cause and how to treat uterine fibroids were a real eye opener. I started dr williams medication after intense bleeding and pain which occurred during one of my rehearsals (I am a professional violinist).I was later that week diagnosed with 2 medium sized fibroids which placed an enormous pressure on my bladder. I was advised by 3 different doctors to undergo surgery to remove these fibroids as I was told that there was nothing I could do to shrink or stop their growth. Luckily, I ran into dr williams by accident as I was searching for information on the net regarding my condition. I was so relieved to have found that surgery was not always the answer, that it can be dangerous and that uterine fibroid can return even after surgical intervention. In less than 4 weeks of taking dr williams herbal portion and following his instruction, both of my fibroid had shrunk by 100% and the second ultrasound taken 7 weeks after I began taking dr williams medication, had shown that both of these were completely gone. I also my periods became regular. and now am three months old pregnant, you can contact his email address on drwilliams098675@gmail.com for advice and for his product.

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  30. An amazing testimony on how i conceive, also cure from fibroid, i wonder why people still don't believe that roots and herbs are very essential and fruitful in different aspect, especially when you can't conceive and bear children. I am a living witness because I tried all I could to be pregnant but all to no avail, on this faithful day, i decided to check the net for updates on healthy living and i came across testimonies of lot of women who Dr Ebhota has helped with his native herbs to conceive. i decided to put a try because this has been my greatest problem in life so I emailed Dr Ebhota, and he told me what to do which i did, after which he sent me some roots and herbs syrup and gave me step by step guild lines on how and when to have sex with my man. I missed my menstrual flow within a short period of taking it, and the doctor confirmed that I am pregnant. I am very glad to tell the world that I just put to bed a bouncing baby boy last week. Contact Dr Ebhota for your own testimony on: (drebhota123456@gmail.com).Or Whatsapp Him +2349035324155

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  31. Hi it's laa! 9 months ago my doctor told me I was diagnosed with HSV2. I was heart broken, However that same month i found a Dr. who helped me to cured the virus with natural herbal treatment permanently. thanks to Dr. omohan for his natural herbal treatment that eliminated this virus out in my body forever. his contact information for any incurable virus via; dromohanherbalmedicine@gmail.com or whatsapp him or call him through his phone number +2348164816038.    

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  32. I try all my best to get pregnant for a long time of been married. My husband and I have been seeing fertility specialist. We have done our best but no luck. My husband has a sperm count which goes up and down, the doctor has recommended him taking the Proceed supplement which he is doing over 3 years with no change in the situation .. one night i come across a lady testimony on my page group on how she was able to get pregnant after drinking Dr Ebhota herb product , so I contacted him and I told him all about my problem, so he agreed to help me with his herb product,he sent me three bottle of the herbal medicine, which i use, he told me to meet with my husband.. within the month of using the herb medicine,after three weeks of drinking the herb, i started having morning sickness and hormonal changes. I immediately went to the my doctor and it was confirm that I was pregnant.. all thanks to Dr Ebhota for helping me and my family,Dr Ebhota treatments are an excellent complement he can definitely help you.I highly recommend Dr Ebhota email to the world for does how find it difficult to get conceive,email him if you need his herbal medicine,drebhota123456@gmail.com or contact him +2349035324155, 

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  33. I give thanks to Dr oriane for helping me get a permanent cure to Uterine fibroid. I have used different western medication without any improvement, And I could not have a child of my own. I had heavy bleeding, frequent urination, a bulky stomach, and cramping. My bleeding is sometimes so heavy that I can’t go out. I go through 9-10 pads in a day. It is so uncomfortable. I have tried everything you can imagine because I’ve had my fibroid for 18 years but none of them have really worked. They just make you feel like you’re doing something but at the end of the day its not really much of a relief. People advertise all sorts of “Fibroid Cures”. I’ve tried all that you can imagine and they worked for a little while, but it’s not working out you have to keep on going. You cant really stop taking them. I got the contact of Doctor oriane from the testimony of people on the internet, and I contacted him through the Email and explained every thing to him. then he sent me his product which I used for one month. Now am completely cured so I really want to tell this to the world that there is a permanent cure to Fibroid. contact him on droriane6@gmail.com, he can help on any health issues  or via whats-app at +2349031652461

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  34. I give thanks to Dr oriane for helping me get a permanent cure to Uterine fibroid. I have used different western medication without any improvement, And I could not have a child of my own. I had heavy bleeding, frequent urination, a bulky stomach, and cramping. My bleeding is sometimes so heavy that I can’t go out. I go through 9-10 pads in a day. It is so uncomfortable. I have tried everything you can imagine because I’ve had my fibroid for 18 years but none of them have really worked. They just make you feel like you’re doing something but at the end of the day its not really much of a relief. People advertise all sorts of “Fibroid Cures”. I’ve tried all that you can imagine and they worked for a little while, but it’s not working out you have to keep on going. You cant really stop taking them. I got the contact of Doctor oriane from the testimony of people on the internet, and I contacted him through the Email and explained every thing to him. then he sent me his product which I used for one month. Now am completely cured so I really want to tell this to the world that there is a permanent cure to Fibroid. contact him on droriane6@gmail.com, he can help on any health issues  or via whats-app at +2349031652461

    ReplyDelete

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