The difference between institutionalisation and independent living is the difference between abusing human rights and respecting them

I couldn’t decide what to say at today’s Housing and Support Alliance conference. I’d planned to share some thoughts about supported decision making, social networks and relationships and the importance of involvement, which I blogged about last week.

But in the end I didn’t.  

Since becoming a consultant in 2011 I’ve spent a lot of my time focused on disability rights in Europe and internationally.

When I began doing that I admit I probably had a somewhat elevated opinion of what we’d manage to achieve in the UK and what in time I’ve realised was a patronising view of other countries.

There are indeed horror stories.   I was recently told about a psychiatric institution in Asia where the patients – or perhaps more accurately inmates – are routinely shackled.  One woman was kept in a shed behind the main building.  She had been there for 20 years and never let out.  Food was passed under the door.  The shed had never been cleaned.

Yesterday I was at the EU Agency for Fundamental Rights to talk about de-institutionalisation and was reminded of the case of Rusi Stanev – a man with Schizophrenia who had been detained in a delapidated psychiatric institution in an isolated mountain area of Bulgaria for seven years.  His case went to the European Court of Human Rights.   The Court found a violation of Mr Stanev’s right to liberty as he was unable to challenge or seek compensation for his detention.  The Court also held unanimously that Mr. Stanev had been subjected to degrading treatment in violation of Article 3 of the ECHR by being forced to live for more than seven years in unsanitary and unlivable conditions and that domestic law did not provide him any remedy for such violations.  Reports by the Fundamental Rights Agency show that his situation was far from unusual – especially in Eastern Europe.

Countless countries have been criticised by various UN human rights treaty bodies, including the Human Rights Committee, the Committee Against Torture and the Committee on the Rights of Persons with Disabilities for their approach to people with mental health problems, learning disabilities or autism.   Their long term detention in psychiatric facilities or social care institutions has been classified as inhuman and degrading treatment as has the use of drugs, restraints and solitary confinement.

But in the UK we’re better than that aren’t we? No chance we’d face such criticism given all the progress we’ve made?

The reason I decided to change from what I had planned to say was having read the horrifying stories, reported in the Sunday Times (albeit after some considerable delay given one had been reported by the Care Quality Commission back in June), of Lisa and Stephanie via a series of gut wrenching and powerful blogposts from Sara Siobhan, Lucy Series and Chris Hatton.

Lisa lived for 9 years in solitary confinement, in a locked room at the ‘end of a male ward in a specialist learning disability inpatient service. All interactions with her were through a slot the size of a letterbox including her food being passed to her and her hair being brushed, with a beanbag for her to sleep on.

Stephanie was admitted to a specialist learning disability unit at the age of 18, where she lived in solitary confinement in a padded room with skylight windows for almost 7 years, during which time she gained over 10 stone.

Lisa eventually moved out; Stephanie died in the unit of sleep apnoea

We need to name this treatment for what it is: not poor quality care as though we were simply talking about a matter of customer service. Such experiences amount to the gravest of human rights violations – on a par with those in Africa or Eastern Europe in relation to disabled people.  Up there with some of the most serious human rights violations of any kind.

They both endured what has been referred to as a ‘civil death’ – having had all of their legal rights denied and rendered entirely invisible to the outside world. And of course in Stephanie’s case her life ended altogether while detained.

Doctors, clinicians, psychiatrists, commissioners and the staff in these institutions all must have contributed to perpetuating their situations.  We know from other stories that these are unlikely to be isolated cases.

They are the product of the same system and society which continues to institutionalise tens of thousands of people with intellectual disabilities and which leaves people otherwise isolated and in vulnerable situations in the community.

The difference between institutionalisation and independent living is not principally about where a person lives.  It is about the difference between abusing human rights and respecting them.

Our agenda has to be about how we ensure people enjoy liberty, the right to make decisions about their own life, to live free from violence, exploitation and abuse, to have privacy, the right to participate in all areas of community life, to have relationships and to start a family of their own.

Human rights must guide us and be the measure of our success.

To repeat the rallying cry of the 100 people with learning disabilities who met at CHANGE in Leeds earlier this year, this is about ‘voice, choice and FREEDOM!’

If we each really want to make a difference, we must come to think of ourselves and act as freedom fighters.


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