Jan’s story: ‘I began to feel like a human being again’

When I was younger I thought that human rights were for people in other countries. I felt proud that we, in the UK, were strong enough, rich enough, and compassionate enough to provide support for people in other countries who were experiencing atrocities, like the girls in Afghanistan who were prevented from going to school.

I am still proud of that. However, now that I have had my own experience of poor human rights in the UK, I realise that we need to focus close to home as well.

Jan Sutton My name is Jan Sutton. I have multiple sclerosis.

I am severely disabled and very ill. Because I am so weak, I cannot really function without support. In reality, this means that if I do not have support I have to stay in bed.

For years, the support I received from my local council was only enough to meet my basic needs. An agency employed by the council would send carers to pop in for short visits (30 – 50 minutes) at set intervals so that I could wash, dress, and use the toilet.

This level of care meant that unless I was going to the toilet or having a shower (or carrying out any of the tedious and basic functions of life) I was, in effect, trapped in my bed. There was simply not enough time to do anything else.

Then, in 2009, the agency that the council was using had to pull out at short notice, leaving me scrabbling to get any support at all. At that time no agencies in the area would take on such short visits, so I was left with no choice but to engage an agency who stayed for four hours at a time, instead of my usual 30 minutes.

I ended up in massive debt doing so, but I couldn’t see any other options, and assumed that the council would recognise this and reimburse me.

This crisis, almost overnight, changed my life for the better.

Suddenly, there was enough time for me to be out of bed and be supported. Suddenly, I had small windows of time during which I could participate in life again.

I could socialise with my friends in my lounge, rather than have them sit at my bedside. I could go to the park at the end of my road and sit in the sunshine.

I began to feel like human being again. I began to realise that the difference between my previous situation and being tied to my bed was a small one. And then I thought about the work that I had done as a young adult, campaigning against apartheid and other human rights atrocities.

I began to realise that when I was able-bodied I would not have tolerated this way of life. If I was able-bodied and kept trapped in my bed I would regard this as inhumane – I would regard this as a breach of my human rights. And so I looked to the Human Rights Act.

Jan Sutton

It was the Human Rights Act that motivated me and gave me the strength to take legal action to secure a better quality of life for myself.

The Human Rights Act told me “yes, you are worth as much as any human being”. When I read the literature about the Human Rights Act, it confirmed to me that I have a right to develop my personality and my relationships, and to participate in my community. It confirmed to me that the rights that I regarded as so fundamental to people in other countries that I wanted to protect also applied to me.

I realised that the compassion and care of this country is something that we need to apply to ourselves, as well as abroad.
I am proud of this compassionate, caring country that I live in, but I know now that we need a tool to remind ourselves of the fundamental values by which we support each other.

I think the Human Rights Act is that tool. It is there to remind those of us who find ourselves in unacceptable situations that we are supported by our society and its laws.

It is there to remind public bodies, and society as a whole, how we choose to behave towards each other.

Jan SuttonThe Human Rights Act helped me to feel stronger – strong enough to search for the support to challenge my local council.

It was a piece of legislation that said it was okay for me to want to be treated like human being. I needed that. I needed to see it black-and-white and to know that it is enshrined in law, in our society that values the rule of law.

My life has changed immeasurably now that I receive a reasonable level of support.

Truthfully, I ended up living with an unacceptable lack of dignity for such a long time that it has taken me years to recover the self-esteem, and sense of self that I lost as a result of such degradation.

Now I am stronger, now I believe in my worth, now I want to participate in my society and to support others to live a dignified life.

I will never be well, I will always spend most of my time in bed, but now I can enjoy the moments when I’m well enough to be active. I can participate and contribute. I feel like a human being again.

This why the Human Rights Act is so important to me.