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Where it all began: self advocacy groups meeting up

A reflection from our Chief Executive: The Power of Advocacy

At its heart advocacy is simply about giving someone the support they need to have their voice heard.

Over 20 years ago I was lucky enough to find myself on placement from college at People First, a user led, self advocacy organisation. The experience was mind blowing, and quite literally life changing.

For the first time I got to see diversity of this kind, with a mixture of people with all different skills, experiences and support needs. I had led a sheltered life and had never seen anything like it before – it was eye opening and wonderful.

During the placement, I was sent to support Dr Rohhss Chapman at a workshop she was facilitating. She was working with a group of ladies with learning disabilities who were living in a convent. These ladies were the very definition of institutionalised. I can clearly remember that they all dressed the same, had the same hair style and followed instruction… to the letter. They simply did not have the skills to self-determine or speak up for themselves.

The workshop was about power and control. The ladies perhaps didn’t realise it, but Dr Chapman was trying to get them to take even just the smallest amount of control by making sound with musical instruments. It took weeks of painstaking work to get them to express themselves even just a little. As to make noise, give an opinion or say no was completely alien to them.

Dr Chapman worked with such kindness and compassion, she went at a pace that worked for the group and slowly a relationship developed. The ladies started to smile more, get more involved and even express the smallest of preference.

Years later, I got the privilege, to watch these ladies move into independent living, with two of their friends. Their individuality grew. They loved clothes and having their hair done in different styles, they wore jewellery and really started to live.

I was inspired, I knew that I had found my place in the world. Helping people to find their voice, their power and control was right for me, and thankfully it is right for many others.

Fast forward to now, People First and other advocacy organisations continue to do essential work with people. Dedicated to helping people find their voice, as well as supporting them to make choices and understand their rights.

However, there’s a problem looming, with our advocates being directed by the care act, mental health or mental capacity acts, advocacy has unfortunately become so transactional. Advocates have a limited time to work with a person, coupled with an endless queue of people waiting for their help. This means that we go in, we support, and we get out as soon as we can so that we can get to the next person in need.

In my view some people will need help throughout their lives, an ongoing independent partner or ally who’s there for the long haul, who will help a person navigate a complicated life and system. A friend who will be there no matter what.

Leaders in advocacy must stay focused on the founding principles of our work, remembering why we are here and advocating for the types of support and funding that’s needed for so many people.

I have witnessed firsthand advocacy transform lives, over and over again. I have seen people take control and do it their way, push back and express their wishes and desires. But I have also seen people bounce from crisis to crisis in a complicated and unfair world which is difficult to understand.

Personally, I have a 21-year-old son with learning disabilities, my son will always need help, like so many others, not just when things go wrong (which they will) but throughout his whole life. I can only hope that organisations like People First continue to be able to support him and people like him to live the kind of life they choose.

The power of advocacy is that it is about people supporting people, and there is nothing more powerful than when we work together to support each other.