Self-advocacy

Also called Speaking up, Self advocacy groups

Speaking up for yourself, with whatever you speak with, and the groups where people who use AAC teach each other how.

What it is

Self-advocacy is a person saying what they want, what they think and what is wrong, in their own voice, to the people with the power to act on it. For a person who uses AAC the "own voice" part is the point: the words come from them, whether spoken by a device, signed, pointed to or spelled out letter by letter, and not from the parent or carer sitting beside them.

It is also a movement. Self-advocacy groups run by and for people with a learning disability have existed in the UK for decades and have changed law.

Who it can help

Anyone who has spent their life being spoken for. Adults with a learning disability, autistic adults, AAC users of any age, young people approaching the transition to adult services, where the decisions get bigger and the person is often in the room less.

It is not the same as independent advocacy, where a trained stranger speaks on your behalf. Both matter; this one is about the person doing it themselves.

How it works

Self-advocacy is a skill and it can be taught. The parts are: knowing what you want, having the words for it on your system, knowing who to say it to, and being given the chance to say it before somebody else does. Meetings are the classic test. A review meeting where the person's views are read out by a parent from a form filled in by a support worker is not self-advocacy, however sincere everyone was.

Person-centred planning is designed to put the person's own voice first; Talking Mats is a tool many people use to prepare and present their views. Pre-stored messages on a device let a person say something long and considered at the moment it matters.

Groups run on the same principle. People with a learning disability chair them, decide the agenda and speak for the group to councils and the NHS. Local groups exist in most areas and are the fastest route for a person into a room full of people who understand.

Getting started

Before the next meeting about the person, spend an hour with them preparing three things they want to say, in their words, stored on their system or written on a card. In the meeting, ask for them to speak first, and wait.

Put the words for self-advocacy on the board: I want, I don't want, I think, listen to me, that's not fair, I have a question. They are core vocabulary and most systems already have them.

Search for a local self-advocacy group this week. Mencap's local groups and the People First network cover most of the country, and many meet online.

Where to get help

Mencap supports local self-advocacy groups. CHANGE is led by people with a learning disability and publishes easy-read material on rights. 1Voice connects AAC users and families and has adult role models who use AAC. Communication Matters is co-led by people who use AAC and its conference is where much self-advocacy in AAC happens. Disability Rights UK publishes guides on rights.