I’ve spent this month (May 2015) not only feeling devastated by the general election result but also trying to clear out my study - both of which have made me feel that half my life is being thrown away.
The ‘stuff’ accumulated over most of my working life up until 2010, when I retired, represents the battles waged to articulate disability as a human and civil rights issue. It has been (and continues to be - I haven’t quite finished it yet) very very hard to divest myself of these various documents - many published in the days before internet publication. It’s made even more difficult because at the same time we are faced with five years of a government seemingly determined to roll back the progress disabled people have made. The five years since 2010 were bad enough - now things can only get worse.
So, partly to make myself feel a bit better but mainly because it’s so important not to lose what we’ve already learnt, I’m going to write a series of blogposts based on some of the stuff which I’ve found it impossible to throw out.
This first one links language and the current assault on human rights.
In 1995, an organisation called Community Partners, based in Guildford, published this in ‘The Advocate’ Newsletter.
You and I
I am a ‘resident’
You just live at your place
I live with seven others, a couple of whom I don’t really like
You’ve just got a new place with a couple of friends because you didn’t like the people you were sharing with
I’d like to leave my room in a mess but staff tell me I’m learning something when I clean it up very day
You tell me your room is a disaster area
I am aggressive
You are assertive
I have behaviour problems
You are rude
You don’t like being told what to do
I’m on a special diet because I am 5 pounds over my ideal body weight
Your doctor gave up telling you
When I ask you out for dinner, it is an outing
When you ask someone one - it is a date
I want to talk with the nice looking person behind us at the grocery store. I was told it was inappropriate to talk to strangers
You met your husband at the cheese counter. He couldn’t find the brie
I think some of the people who are paid to work with me are my only friends
You have lots of friends; none of them are paid
I don’t have anything to say who I am
You’ve got your driving licence
My Case Manager, Psychologist, Occupational Therapist and House Staff set goals with me for the next year
You haven’t decided what you want out of life
I don’t know how many people have read the progress notes people write about me. I don’t even know what is in there
You didn’t speak to your best friend for a month after he read your journal.
This juxtaposition between ‘ordinary life’ and that of people identified as ‘service users’ is all too familiar to disabled people and their families. Mark Neary is only one of many who has drawn attention to it in more recent years but we seem to be banging our collective heads against a brick wall as far as ‘services’ are concerned.
The issue of language used about people who need support in their daily lives is not a trivial one. Such language creates a separate group of ‘service users’ and this separation undermines our common humanity.
It’s the failure to recognise common humanity which lies at the heart of the whole continuum of the way disabled people are so often treated - it starts with dehumanising language and ends with the worst kind of ‘institutionalised’ abuse such as that which took place at Winterbourne View or Orchid View.
If you see someone as fundamentally different to you then you are unlikely to treat them as you would wish to be treated yourself. A failure to apply this golden rule of ‘Do as you would be done by' is evident in so many of the more or less routine ways in which people are dehumanised. To take just a few examples:
Do you think that the Chief Executive of Southern Health was applying the golden rule when she wrote about the Root Cause Analysis carried out, to the grieving mother of a young man who died while in the care of her organisation?
Do you think that those responsible for allocating resources put themselves in the position of young people with learning disabilities when they make decisions leading to so many being incarcerated and mistreated for years in what are supposed to be ‘short-term placements’?
Do you think the politicians responsible for closing down the Independent Living Fund put themselves in the position of people like Mary Laver whose whole way of life is threatened as a result?
It’s important to make links between the ongoing struggle amongst disabled people and their allies for recognition of our common humanity and the current onslaught on human rights generally, in the context of the Conservative Party’s manifesto commitment to “scrap the Human Rights Act”.
The underlying principle of human rights is that they are universal - by definition they apply to us all by virtue of our common humanity. A failure to acknowledge and uphold an individual's or a group of people’s human rights is a denial of their humanity. For disabled people, this denial often happens implicitly - with assumptions that a particular right is not ‘relevant’ or that denial is in someone’s ‘best interests’.
The website, rightsinfo.org, is running 50 stories about the real-life application of human rights law and several directly concern disabled people.
For example, disabled people’s right to a private and family life was upheld when the High Court ruled in 2003 that a local authority had breached a disabled woman’s right to a private and family life by failing to correct a situation where she was unable to use the bathroom in her house because it was inaccessible to her.
Another example is from 2014 when the Supreme Court ruled that “Human rights have a universal character and physical liberty is the same for everyone, regardless of their disabilities”. Therefore, as rightsinfo.org put it, “Thanks to the Supreme Court in this case, all disabled adults in care are now included in the word ‘human’ of human rights and entitled to the same dignity and status as the rest of us”.
The fight to prevent the government repealing the Human Rights Act is a fight on behalf of us all. At the same time, we must remember that, as Eleanor Roosevelt said: human rights begin “in the small places, close to home - so close and so small that they cannot be seen on any maps of the world”. Human rights, and their abuse, begin in the detail individuals’ lives. They begin in the way we relate to each other, the language we use: “Unless these rights have meaning there, they have little meaning anywhere”.