Shownotes:

Being an advocate for equity and inclusion requires a certain level of self-awareness, humility and an appetite to be a lifelong learner. Especially considering that the vocabulary around DEIB/DEIBA or whatever you choose to call it is constantly evolving, there is more we don’t know than we know.

My chance encounter with Caroline Collier, CEO Inclusion Barnet happened over a LinkedIn recruitment post and my subsequent message to her regarding the language. She was gracious in her response educating me about why they were using ‘disabled person’ (instead of person first language). I was slightly mortified but glad that I had the opportunity to engage with Caroline to better understand why they subscribe to the social model of disability.

I am grateful to Caroline for making time for this important conversation (a learning opportunity for me). In the episode we spoke about Inclusion Barnet and why it describes itself as a Deaf and Disabled People’s organisation, deaf being separate from disabled in deference to the cultural model of deafness. We also spoke at length about the ‘social model of disability; harnessing lived experiences for social change; acceptable language; role of the private sector in opening up opportunities; what allies can do to support; and the just launched ‘Campaign for Disability Justice’ calling for a) Opportunity b) Security c) Respect.

Did you know that care in the UK is based on a ‘medical model’ that frames the body or mind of disabled person as something that needs to be fixed?

“We see disability through the ‘social model’, where being Disabled is a political term that describes our experience of marginalisation, not individual impairments. The social model allows us to come together to fight back against a world that we can’t navigate safely without care and support. This model helps us understand that a flourishing social care system should give us access to choices and the freedom to live independently.

We want a system that enables us to live independently, rather than generating a list of ‘care tasks’ our local authority can charge us for. The struggle for a better, more equal system should unify us all to talk about intersectionality and disability justice alongside the crucial demands for fair conditions for both paid and unpaid carers, wholesale changes to the gendered imbalance of care responsibilities, and the need to tackle the looming climate crisis, which will affect our capacity to care for one another.” Caroline Collier, CEO Inclusion Barnet

Episode Transcript:

Sudha: Good morning, Caroline. It's wonderful to have you today as a guest on the Elephant in the Room podcast. Thank you for being here

Caroline: Thank you. Really pleased to be asked, so thank you so much.

Sudha: Let's start with a quick introduction to who you are and what you do.

Caroline: I'm Caroline Collier. I'm CEO of a deaf and disabled persons' organization called Inclusion Barnet. My background is varied. I started after college working in libraries. Then I ended up in my thirties writing about the construction industry, unusually enough. That changed in 2009 when I became really ill with what turned out to be bipolar. I had a bit of a rethink just because I wanted to find something with a little bit more purpose, and I was incredibly lucky to end up working in the organization that is now Inclusion Barnet. I've been here for nearly 14 years, and I consider myself incredibly privileged to be able to have a job where I can sometimes make a bit of a difference and also just be learning every day.

Sudha: Yes, it's good to hear because we tend to put people in boxes but there's always a journey.

Caroline: I've been pretty adaptable over the years, I would say, yes.

Sudha: From what I understand, Inclusion Barnet it is a deaf and disabled people's organisation. Tell us a bit more. I'm curious and interested to understand why deaf is separate.

Caroline: Okay. You're not the first person to ask, and it does confuse a lot of people. But the deaf being separate from disabled is in deference to the cultural model of deafness, which rejects the idea that hearing loss is an impairment and instead emphasizes the shared sort of culture and history of British Sign Language users. So, because the deaf community is more comfortable with that approach, in London at least, we tend to use "deaf and disabled people's organisations" to recognise that distinction. Sometimes, in other parts of the UK, just "disabled people's organisation" is also used, but that's regional variance.

Sudha: That's very interesting to know and also good to be aware about this.

So Caroline, our first interaction took place because I reached out to correct you by suggesting person-first language on a LinkedIn post and very kindly and generously, you educated me on the social model of disability, which I know of. I have been looking at diversity and inclusion and try to keep myself updated. But I'm hesitant to use that model. Is one or the other more acceptable and why?

Caroline: That's really interesting, and I might explore with you later, if you're okay with that, why you're hesitant, because I think that's really interesting.

The first thing to say is, obviously, we can all self-describe however we want to. But I think one of the reasons that the kind of person-first convention has taken hold is because the social model of disability is not nearly as widely known as it should be. Very simply, the social model of disability says, okay, some of us have conditions, impairments, illness, whatever, but what actually disables us is not our individual condition, but it's the disabling attitudes and barriers created by society. So if I were a wheelchair user, my problem in a multi-storey building is the fact that there isn't a lift; it's not a problem with me, it's a problem with the building.

If I was rejected for a job because someone was worried about whether a bipolar person could do the role and whether they could handle the stress and all the other bad attitudes people have, that's not a problem with my competency. That's a problem with their attitudes. So, there's a lot that society can do. And it's really important because society needs to accept responsibility for changing and being inclusive. I'm not saying the social model is perfect; no theoretical model is perfect, but it's a really important construct to make us think about, okay, what can government do? What can institutions do?

Because there's always a temptation with disability to just go, oh, it's sad, but it can't be helped. A lot of things can be helped, and it's really lazy thinking, especially today when we have so much technological knowledge, so much ability to change things. Why wouldn't we just make things as accessible as possible? So, it's important to keep pushing the social model, reminding people, and just challenging people to think about difference. And how that comes back to language is, I always say disabled people or disabled person because we are disabled by society. If you say person with disabilities, you're attaching the disability to the person. That's social thinking. So that's why we make that distinction. And can I ask you why you're hesitant? That's really interesting.

Sudha: While you've been speaking, I've been thinking about that, why I've been hesitant. And it could also be to do with the fact that people are not as conversant, including me, with the social model of disability. While we hear advocates occasionally speaking about it, the other model is more prevalent in most places, even in training, unfortunately. And that could be the reason for the hesitancy because you're unsure, am I doing the right thing?

Caroline: Yeah, no, it's difficult, isn't it? And I think we all sometimes worry about saying the wrong thing.

I think it's a challenge for the disability movement to actually get more airtime to explain why this is important because the theory behind it is important; it's the impetus for change. And while we campaign for that change, we think it's important to use the language that reflects that. That's not to say that there aren't all kinds of challenges trying to always find the right words for the right things, because I think that's something that we all grapple with in this world now. But the core theory of trying to get systemic barriers changed is the overriding thing.

Sudha: That's true. I've gone to your website and seen this, that you speak a lot about harnessing lived experiences for social change. How do you do that, and why does it matter?

Caroline: I think it’s really important to bring lived experience to bear on a variety of issues.

And we use our lived experience in a variety of ways. A good example might be, we have a service called Touchpoint, which is all staffed by disabled people and provides ...