Podcast Episode: This is Me: valuing the lives of people with learning disabilities
What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.
Michael: On this podcast, I was speaking to Dr Deborah Kinnear from the Scottish Learning Disability Observatory. I was asking her about the new campaign; This is Me 22. But first of all, I wanted to find out more about what is the Scottish Learning Disability Observatory.
Deborah, before we begin speaking about This is Me 22, can you tell us a wee bit about what is the Scottish Learning Disability Observatory?
Deborah: Yes. So, the Scottish Learning Disability Observatory was set up in 2015 and it is funded by the Scottish government. And basically, our remit is to address the health and health inequalities experienced by people with learning disabilities and we do that in a number of different ways. So, over all our programme of research that we do increases awareness among our stakeholders, of the determinants of health of people with learning disabilities. We hope to influence policy and service and practice development and inform development of various service models and interventions. And a big part of our work, as well, is collaborating with external stakeholders to help support the work that we do to help translate our research evidence into policy and practice.
Michael: Okay. So, let’s speak about the campaign now; This is Me 22. But it wasn’t a case of, you know, what will we do to set up a campaign, it was back in 2019 when you spoke to a research voices project. So, can you tell us a bit about how that came about?
Deborah: So, back in 2019 we were funded by the Wellcome Trust Foundation. So, they gave us money to work with a group of people with learning disabilities to talk about their priorities for improving health. And during that project what we had were some key recommendations from people with learning disabilities. One of which was the fact that people with learning disabilities highlighted that they experienced a lot of negative attitudes; and that was something that was very common. And one of the recommendations was that there should be a campaign to challenge those attitudes. And so that was really important to us to take that work forward and that’s how This is Me campaign sort of came about.
Michael: And so what’s involved in the campaign? Because I know that you’ve got a few things kind of going. And I know that you’ve been asking people to make short videos about their experience about discrimination and stigma towards people with learning disabilities.
Deborah: So This is Me, which is valuing the lives of people with learning disabilities. It’s a campaign about challenging stigma, as you say, discrimination and inequalities experienced by people with learning disabilities. So, we collaborated with people with learning disabilities, family members, third sector organisations including the Scottish Commission for People with Learning Disabilities, PAMIS and Down Syndrome Scotland, to raise awareness of the experience of people with learning disabilities. And we did that through a targeted social media campaign and our aim was to challenge stigma, discrimination and influence positive change.
So, we did that by developing a number of short films which we shared on social media. And that was about the insights and experiences of people with learning disabilities and their family members in relation to inequalities, stigma and discrimination they faced. It’s really raising awareness to the general public about the lives of people with learning disabilities and that’s been hugely successful. So, we’ve put that on to, as I say, it’s on social media so things like Facebook, on Twitter we had the #ThisIsMe22 and that was shared over 92,000 times by our Twitter users. So, we were absolutely delighted by the response that we received with this campaign. With regards to Facebook, we had over 8000 views of our campaign and the videos and people sending in their own views about why this campaign is important to them.
People with learning disabilities aren’t really treated as equals in society; it’s really clear from our research. For example, we know that people with intellectual disabilities and learning disabilities, they’ve got much lower life expectancy and poorer health care; they don’t have the same employment and educational opportunities as other people. And there are much higher rates of hate crime and bullying towards people with learning disabilities. And that’s something that we need to raise awareness of and something we need to change. All these issues that we know from the research were reiterated, we were re-told this by people with learning disabilities who said that their mental health impacted by being bullied or by discrimination. Someone may have a communication difficulty that they feel they’re often dismissed and not respected and that has an impact on their mental health. So, there’s all these issues, you know, that we really need to get out there to say, no, this is what’s happening in society; how can we as a society change that?
Michael: How important was it to work with different organisations? I know that you mentioned about Down Syndrome Scotland, and the Consortium for Learning Disabilities; how important was it not to stand alone, basically, on this campaign, but work with different charities?
Deborah: It’s hugely important because the Scottish Learning Disabilities Observatory, we’re the experts in terms of gathering data and identifying what the health problems are. Working with, for example, the Scottish Commission for People with Learning Disabilities, they have a whole other level of expertise. And they gave us a lot of guidance throughout all aspects of this campaign. PAMIS, which is promoting a more inclusive society, and Down Syndrome Scotland have different targeted populations that they’re interested in. So, people with more complex health needs or people with Down Syndrome that have very different health profiles to other people with learning disabilities.
And we need to remember that when we’re doing all sorts of research; we can’t just bracket our group, everybody into, say, they have a learning disability. There’s a huge array of different types of disabilities which we need to be aware of and so we need guidance and support from all of these experts and let’s not forget the biggest experts who are part of our project partners, our self-applicants with learning disabilities and family members and carers who we could not have done this project without because their insight, their guidance at every step of the way was key to us having a successful campaign.
Michael: So, what kind of things have you heard so far through like the campaign? I know it’s kind of early days but just give us one or 2.
Deborah: You know there’s been a huge, as I said, positive response about this campaign. People sort of getting it, you know, we’ve lot’s more followers, lots of people wanting to hear more about what are the next steps of the campaign because we know as I said from the research that people with learning disabilities are not treated as equals in society and that voice, that’s becoming very clear through the campaign.
We also did a public survey when we carried out this campaign. So, we asked over a thousand people in the general public about their views because from previous work that we’ve done, engagement activity, there’s clearly that lack of understanding from the general public about what is a learning disability, and what kind of impact does having a learning disability have on someone’s life? But when we carried out the survey, we found that actually over 70% of people in the general public said, oh I do know what a learning disability is and I do think that people with learning disabilities should have better opportunities with employment and education. But what we found from the surveys was that people in the general public said, actually I don’t do enough or I don’t know what to do to help eliminate bullying or the use of negative words or phrases that are used in society which are very offensive to people with learning disabilities.
And I don’t know how to eliminate hate crime. So, these are big issues that we need to now go, well actually how do we address those? Like if the general public don’t know or don’t do anything about it when they see it happening; what can we do to change that? So, these are things that we, you know, so from this campaign, we need to identify and take forward to wider organisations, to government, to key stakeholders, to say, what can we do now?
We’ve got all this evidence; what can we do to take action and make a change in society? So, this isn’t the end of the campaign. You know, we’ve had two, what’s called amplification days. So, two days where we’ve boosted our campaign on social media. So, we plan on doing that every couple of months and we would love people to get involved. So, using the #ThisIsMe22 and telling us why this campaign is important to you, what you think we should be doing to make changes. And we also plan on having a workshop which will happen, hopefully this year, where we’re inviting members of the public to come along to tell us about, again, why they think this campaign is (… unclear) and what we need to do to make positive change. And we’re also going to have what’s called a roundtable discussion, where we’re going to invite people with learning disabilities, carers, government officials, third sector organisations to come together to look at all the findings from this campaign and say, right, let’s take action; and then let’s have a plan for the next sort of couple of years going forward.
Michael: Just finally, how important was it for you to hear that people with learning disabilities want a campaign? Because there should be no discrimination, stigma towards people with learning disabilities and you know like every day society or in the workplace or when you’re out and about with your pals at the weekend. How powerful was it for you to hear that from people with learning disabilities to say, we need to do something?
Deborah: It just reinforces why we’re doing it and reinforces why, as a researcher, this work is so important. I have friends with learning disabilities, I am a former carer, I’m a researcher on learning disabilities, this should not be the case in 2022, that people with learning disabilities are still being discriminated against in society. It’s just simply not acceptable. And it is a human rights issue, things need to change and we need to address it and call it out for what it is. We cannot continue in this manner and we need society on board to sort of say, everybody is equal in society; there’s no excuses.
Michael: Okay. Thanks, and good luck for the rest of your campaign.
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