In the past week there was energetic debate between Simone Aspis and family advocates about who should speak for people with learning disabilities. It prompted me to write this.
I wrote back in 2016, at the launch of Learning Disability England, that families and self advocates should stand together, that they have far more in common than divides them, and that the need for a loud and united voice to fight for a better life for people with learning disabilities and their families was urgent. That need has not gone away.
I believe even more that we should be seeking for opportunities for self advocates and family members to stand together, having had lengthy discussions with the mother of a woman with severe and profound learning disabilities for whom self advocacy is but a dream. That mother’s argument that if she does not speak up for her daughter, no one will, is extremely powerful. It prompted me to reflect on my own experience of self advocacy, and the published literature, to reflect on the extent to which self advocacy includes people with more sever and profound learning disabilities, those, quite literally, without a voice. Whether it’s for lack of imagination, resources or motivation there is very little evidence that self advocacy groups have made space for people with profound and multiple learning disabilities. Jackie Downer, a veteran of self advocacy in England, once explained it to me like this:
I’m so used to saying ‘my needs’, tough luck about the others. They’re somewhere else. It can work but it takes time, and we, as people with learning difficulties, we got no time.
She makes a fair point – self advocates have enough on their plates. All the more reason then to abandon tired old arguments about who has the right to speak. Instead, we could use the energy released to work out ways for self advocates to share platforms with family advocates to take the fight where it is really needed – for resources and commitment from those in power to ensure that a good life is there for everyone.