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…..
Love, Belief and Balls 
Article 7 too: No punishment without law.
Restrictions of liberty, inability to determine what you do with your day, inability to access the world beyond your home when you want, etc, is what you expect if you commit a crime. At least then you would get a trial before punishment is carried out, and you’d have a right of appeal too.
This is an issue that many disabled people are faced with, whether learning disabled, physically or mentally disabled. We should be demanding our day in court if they want to mete out punishment.
Article 8: Right to a private and family life
This one really needs to be understood, as recently a ‘legal person’ said at a talk I was at that people with challenging behaviours don’t necessarily have this right.. I had doubts about her ‘legal expertise’ as challenging behaviours may be in part because they’re not having this basic need met.
Ask a psychologist the same question and you’d get a different answer. Or ask different psychologists and you’d maybe get different answers. So who is right?
I’d say to any expert making money in this field, the less expert interference or the fewer the experts the better – the expert is often the parent.
But above all, the person ‘with mental capacity or without’ can show with their behaviour what they want.
Privacy and family life must be part of any care package. It’s too precious a human right.
Unless estranged (in which case I’d hope there’d be extra support) the person is part of a family, not alone as people are often written about as adults over 18 – our nature doesn’t change overnight – unless we make that choice.
Article 8 right to choose and adopt own political and social identity and to create a life style reflecting it alongside having choice and control over one’s life. Seems like if sectioned under MHA 1983, one has a prescribed identity of being mentally ill, given by the state.
[…] Read Mark’s blog here and see how you can contribute. […]
Hi Mark – Re: “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.” Could you remind of the link please? Many thanks.
Reblogged this on Bernie Mayall.
While anything is worth a shot and I welcome a group action on human rights, which as you say are being ignored by NHS/LA and courts, we must also remember that the actual law like MCA./Autism Act per se is being ignored, and it is not being interpreted as all Acts must be, to comply with the HRA . In addition some rights like Art 8 are only qualified, so a proportionate interference is lawful.
Freestanding HRA actions might frighten service providers into HRA compliance on fear of compensation payments.
But we have to remember Dols were born from a need to comply with human rights and effectively have removed them, so even if the initiative proves successful, it might merely result in the executive producing evermore bureaucratic measures that appear to show HRA is being complied with when it isn’t.
What a merry-go-round, or rather, misery-go-round..
But we have to lead or push the issues forward.
And yes, proportionate interference with Art 8 sometimes is the deal, but equal rights must be happen as far as possible.
[…] Fraser Carr and Brandon Styles have agreed to be part of Rightful Lives – an online exhibition highlighting the lack of access to human rights experienced by many disabled people (particularly those with autism and/or learning disability), as well as the grave violence experienced by many disabled people and their families through the systemic problems and failures in health and social care. For example, see the Mazars Report (2015) and the recent Learning Disabilities Mortality Review (LeDer) (2015-2018). See here to learn more about Rightful Lives. […]
[…] #RightfulLives: Online Exhibition of Human Rights & People with Learning Disabilities […]
[…] Fraser Carr and Brandon Styles agreed to be part of Rightful Lives – an online exhibition highlighting the lack of access to human rights experienced by many disabled people (particularly those with autism and/or learning disability), as well as the grave violence experienced by many disabled people and their families through the systemic problems and failures in health and social care. For example, see the Mazars Report (2015) and the recent Learning Disabilities Mortality Review (LeDer) (2015-2018). See here to learn more about the background to Rightful Lives. […]