The Leaders List and “profound and multiple learning disabilities”
“People with PMLD.” “She’s got PMLD.”It sounds blooming awful, doesn’t it? Profound and multiple learning disabilities are not a disease. Nor should they be the thing that defines the individual – and the language above certainly puts the person’s disability at the heart of who they are. So yes, this blog is about the labels we put on people. [pullquote] In general I think Dimensions is quite sensitive to labelling people. We avoid ‘he’s non-verbal’ for instance, preferring the more empowering ‘he does not use words to communicate.’ We talk about the people we support, never about service users or customers. We try to avoid ‘us and them’ language and mind-sets.
Why did we add a category to this year’s Leaders’ List for people with profound and multiple learning disabilities?Simply by so doing, are we not batching people up, classifying them by their impairment? Why can’t people with profound and multiple learning disabilities win a spot in the ‘Advocacy, Policy and Media’ or ‘Changing Communities’ categories on their own merits? Are we discriminating against them because of who they are and, indeed, undermining the very purpose of this List? These are all questions that have been asked of us around this decision. [caption id="" align="alignnone" width="792"] We consulted with Christian on the matter, here he is receiving his MBE for services to people with complex needs.[/caption]
I’ll explain the reasoning below, without any conceit that everyone will agree with it...The Learning Disability and Autism Leaders List aims to celebrate achievements, and raise the media profile, of people with all types of learning disability and autism. Judges, who come from right across our sector including many people with learning disabilities and autism themselves, are briefed to take a person’s disability into account when making the difficult decisions around who makes the List. Last year, mathematicians will have noticed, 90% of nominees (all of whom received a certificate) did not win a place on the List. It is a high bar. The bulk of nominations were for people with mild to moderate autism doing fantastic work to empower other autistic people and change society’s attitudes. Very many of them deservedly won a place on the List. But the List is intended to be broader than that. We want to support people who would not ordinarily be heard to raise their profile and to spread their message through the media. Those least likely to be heard will be those with the greatest challenges and we successfully secured nominations for people with all sorts of complex challenges in life. [caption id="" align="alignnone" width="1024"] Maggie and Doreen are 2019 Leaders in the 'Local communities' category. Read their story[/caption] But last year, not a single person with a profound and multiple learning disability made the List. It wasn’t down to the judges; just two of the six hundred nominees had an acknowledged profound and multiple learning disability. Is it because no-one with a profound and multiple learning disability is doing anything worthy of making the List? Certainly not. So the only conclusion is that for some reason, potential nominees were being overlooked. I’m not going to speculate why. Our response was to raise a flag proclaiming that this List is for people with profound and multiple learning disabilities too – and to fly this flag in the form of a dedicated category for this year’s judges to consider. To get people thinking of who they could nominate. And perhaps, if there is no-one to nominate, to ask themselves the harder question – why not? [caption id="" align="alignnone" width="1024"] Samir and Francesca are 2019 Leaders in the 'Advocacy, policy and the media' category. Read their story[/caption] However, you won’t see those winners segregated out into a separate category. (The same is true of our Group winners.) Whilst it is right to judge people with profound and multiple learning disabilities and group nominees separately, we think it is also right to incorporate the winners into our overarching four categories: ‘Advocacy, policy and the media’, ‘Local communities’, ‘Sport art and entertainment’ and ‘Work and education’. [caption id="" align="alignnone" width="252"] Rosa is a 2019 Leader in the 'Sports, arts and entertainment' category. Read her story[/caption] This year, I am pleased to say, we have received nominations for people with profound and multiple learning disabilities. Not loads, but enough for the List to be able to champion those least likely to have a voice in our country. Is that worth propagating the PMLD label? I believe so – but you be the judge.
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This blog was written by Dimensions Head of Marketing and Communications, Duncan Bell.