The right to a voice that's heard

It’s not enough, says Andy Rickell, for disabled people merely to have a voice. We also have the right for that voice to be listened to

I recently said to Rowen Jade, the new Chair of Equality 2025 (the advisory body set up by government to help design disability policy based clearly on disabled people’s views) that I thought a pivotal right for disabled people was the right to be heard. That is, the right to be supported to say what you think, and for those views to influence what happens, both individually and as a group.

Certainly disabled people, even today, continue to say they are routinely ignored. In my opinion, other rights then pale into insignificance if they are “given” to disabled people without them being able to choose. What’s a right to be cleaned and dressed if you cannot say how and by whom you want it done!

Recently I was given a shocking example of the importance of disabled and older people being the mouthpiece for their own views in influencing national policy. A young policy officer for an age charity expressed the view that older people should pay more for their own “care”, because as a younger person she did not want to be paying for them. An understandable view, but is that also the view of older people, and what will the policy officer be advising government to do – what she wants or what they want?

There has always been concern that the voices of disabled people are not heard enough in designing disability policy. Furthermore, that others – disability charities, service providers, professional service deliverers and lobbyists, parents and “carers” – have been keen to make sure their views are heard, and sometimes even wrongly claimed they represented disabled people. I have heard them say this in front of politicians!

These other stakeholders have also been relatively ignored, too, and are understandably desperate to be heard.

This desperation, coupled with government recognition that disabled people are the key stakeholder, has resulted in these stakeholders claiming to speak for disabled people, in order to be heard themselves. We need to recognise the right of all stakeholders to speak up for their own interests, but not at the expense of disabled people (including children) having their own separate and distinct voice.

The government effectively recognised the need to amplify the distinct voice of disabled people when it chose to set up Equality 2025. Also, privately, politicians have acknowledged to me that they understand that different disability organisations have different levels of credibility when it comes to representing disabled people’s views – they are not fools!

A mechanism is needed by which all organisations involved with disabled people can support those disabled people to get their distinctive views heard, both within their organisations and to government. Rowen said that Equality 2025 is thinking how they might be able to help build links between disabled people (including those supported by a plethora of different organisations), and government’s ear. It is badly needed.

• Andy Rickell is a disability rights campaigner