McDonald v UK, An Opportunity for Dignity?

On the 20th of May the European Court of Human Rights (ECtHR) ruled that the withdrawal of overnight care from Mrs McDonald by the London Borough of Kensington and Chelsea breached her human rights for almost a year (from the 21 November 2008 to 4 November 2009). However, the court also ruled that from this period onwards the interference in her human rights was proportionate, "necessary in a democratic society", and “in accordance with the law” because that interference "pursued a legitimate aim", that aim being "the economic well-being of the state and the interests of other care users" (quotes from ECHR press release). Owen Bowcott’s summary in The Guardian is useful, as is the background to the case from Disability Rights UK.

My gut instinct on hearing this outcome was sadness, sadness that a country as rich as ours chooses not to grant people the right to use the toilet in a way that most people would regard as normal, and sadness that Mrs McDonald is now condemned to pee in her bed every night. I guess that sadness is tinged with fear too. I need support to carry out all basic tasks, so I'm frightened that withdrawal of this support may be condoned at a European level as being “necessary for the economic well-being of the State and the interests of other care-users ". I'm really not sure what I would do if the support I’m receiving was reduced.

I was surprised, and heartened, to read positive commentary about the outcome of the McDonald case "we are encouraged that the ECHR has taken the view that dignity and respect for private life should be taken into account when the State is taking decisions regarding support to disabled people. This sends out a helpful message to those challenging their care plans." (Sue Bott, Director of Policy and Development, Disability Rights UK)

I also feel a sense of hope from statements such as;

“The European Court’s reliance on the concept of “strongly held ideas of self and personal identity” sends an important signal to the UK courts and local authorities to make sure people’s basic human rights are given proper consideration, and cannot simply be ignored to save money.” (Sanchita Hosali, of BIHR, and Natalie Threlfall)

 On a personal level the European Court of Human Rights ruling leaves Mrs McDonald living without dignity, and leaves those of us in a similar situation frightened for our dignity. But if we take a broader perspective the ruling is positive in terms of securing the dignity of disabled people in the UK: “The judgement in McDonald the UK is the first time that a breach of Article 8 ECHR [EuropeanConvention on Human Rights] , the right to respect for private and family life, has been identified by the ECtHR in acase concerning the provision of services or support to a disabledperson." (Doughty Street Chambers). Perhaps this broader perspective is useful.

 Looking at the global context, we can see that things are really looking up for the rights of disabled people. The UN Convention on the Rights of Person’s with Disabilities (UNCRPD) was adopted by the UN General Assembly in 2006. That is less than 10 years ago! And things have changed for the better. The wording of this document fills me with hope; “The purpose ofthe present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity”. At both a national, and a global level, conversations about people having the right to dignity, whether or not they are disabled, are becoming more normal, as we become more used to using the language of human rights, and as human rights are enshrined in law.

 To live without dignity, without the basic right to carry out the most basic functions like a normal human being saps one's sense of self, one's personhood. However, the personal reality for so many of us, including Mrs McDonald, is that we are living without dignity. Being able to manage personal functions, such as using the toilet, is so utterly basic.

I have to pee in a bucket a lot of the time, because the toilet in my flat is inaccessible to me (the design of my flat means that using the toilet takes a level of choreography, stamina and aerobics that I am rarely able to manage). Peeing in a bucket is fine when it's a novelty, unusual, and in context. When I was able-bodied I was happy to pee behind hedges if I was walking in the countryside, or if I was camping somewhere without toilets. When I was in hospital with a broken knee having a commode next to my bed to pee in wasn't the greatest experience but it was acceptable. Now the context is changed, now peeing in a bucket is normal, it’s everyday. It's something that I have no choice about despite the fact that I live in a flat with a toilet in a country that regards the use of flushing toilets as the hygienic and socially acceptable way of urinating.

I try to "just get on with it", to realise that there are more important things in life, to focus on the positives and not the practicality of peeing. But the truth is I find it degrading. Those of us who have to toilet 'differently' purely because of an inappropriate environment, or lack of support, know that using a flush toilet is normal in the UK and that other ways of going to the toilet, particularly ways that necessitate other people dealing with our waste, are not normal, and we can never forget this.

For me, I feel that it erodes my dignity, saps at it as day in day out I am reminded that I am less than normal. I imagine that Mrs McDonald has been feeling the same way about peeing in her bed every day since November 2009. And yet somehow she found the inner strength, the energy, the self-belief, and the sense of self-worth to spend years using the legal system of the UK and Europe to announce her right to dignity.

 Despite the fact that this erosion of dignity makes it difficult for us to even regard ourselves as equal citizens we need to find the inner strength and the belief in the humanity of our society to talk loudly about dignity, be open about our experiences of indignity brought about by a lack support. If our indignity is being sanctioned in society's name, when it is deemed “necessary for the economic well-being of the State", then we need to ensure that everyone in society knows about it.

We need to trust in the rule of law both at domestic level and internationally. Our society built structures like the legal process in order for us to have a society that works well and runs well. These structures have been designed by society for society to use, and the ECtHR ruling on the McDonald case reflects this. As disabled people, we need to acknowledge our equality within society. With this comes an equal right to use, and be respected by, the systems of our society.

So let’s regard the ECtHR ruling as an opportunity, and have faith in the rule of law and the humanity of our society. Let’s use the signal by ECHR that dignity needs to be considered when Local Authorities carry out care assessments. Let’s highlight ECHR’s indication that a cut in funding without proper assessment will breach Article 8. It’s time to believe in our right to dignity and take action to secure it.

There is an interesting and very readable explanation of why the result of McDonald v UK is positive by Steve Broach here. Steve is a barrister at Doughty Street Chambers and acted for Mrs McDonald in the domestic courts and the ECtHR.

Striving: a right, a responsibility and a risk

This blogpost is on the new Authors of our lives blog. This is a brilliant blog about positive ideas on the future of independent living. ‘To be truly radical is to make hope possible, rather than despair convincing’ – Raymond Chandler, Resources of Hope

I will be back blogging on my blog regularly now.