121: Why the social model of disability is key to equitable and inclusive change: Caroline Collier, CEO Inclusion Barnet

The Elephant in the Room

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 peer support and welfare benefits advice in Barnet. So, we think, because we work in a social model way, we’re not just working with each individual as an individual to help them overcome barriers and achieve goals and access entitlements. We’re looking at this as a team and going, what patterns are we seeing here? What’s emerging? What resonates in terms of things that we could tackle locally to make a difference? So, I might have a meeting with the team and find myself writing to the DWP about something that doesn’t work, calling the local council to say we’ve got an issue with this, or finding out there’s an issue with accessibility in GP surgeries.

And you might say, could something go in the GP newsletter to just remind them about reasonable adjustments? It’s just trying to think, what differences can we make here? It’s using that social model approach: how can we dismantle some barriers here? Even if it’s incremental things sometimes, what can we do to make life a little bit more accessible?

From another perspective, also, there is a saying that you can’t be what you can’t see, and being open about being a person with lived experience and mental health issues, working in a leadership role, I think that’s also me using my lived experience to say, despite people’s expectations of me, it turned out I could do this and maybe you can do it too.

And that’s really empowering for people who might be really internalising stigma about what people are going to think they’re capable of. It’s really sad when that changes people’s own views of what they’re capable of and trying to provide that positive role model I think is really important.

We believe that we can use the lived experience to take a leadership role in creating a thriving and socially just society. Hugely ambitious aspiration, but we’re trying to show as an organisation that we’re not just providing services by and for disabled people. We can provide services that benefit the whole community because we’re thinking in terms of inclusion and dismantling barriers.

Now, I might give you an example of that if that’s helpful.

Sudha: Yeah absolutely.

Caroline: Yeah, so we run an equalities network that's not just concerned with disability issues. And, for instance, we held a meeting last year where we were looking at barriers to health access from multiple angles. We found that, with three groups particularly, so people with learning disabilities, people who experienced homelessness and rough sleeping, and people who experienced English as a second language, so three very different groups, they were all experiencing barriers and being excluded.

And there were overlapping issues that we could look at holistically. So we went to our local hospital, the Royal Free, and we started a project group with them to say, "Okay, how can we change some systems here, so people don’t get unintentionally excluded before they’ve finished their treatment?" So that was a really useful piece of work, still continuing actually. We’re doing a pilot in pre-operative care to make sure people don’t get excluded from operations that they might need, and we’re hoping to take that wider.

I think that’s quite a good example of how thinking in that kind of barriers way and how do we dismantle barriers is helpful for everybody

Sudha: Yeah, like you said, it's a really good example of it working for the entire community and it's not just for some people, it will benefit everyone in general.

Caroline: Exactly.

Sudha: Caroline, another thing that I learned during my conversations with you, you mentioned that disability is unique in the sense that it would be inconceivable for any rights-based groups to be led by people without lived experience. And, of course, we’ve seen this in the past couple of years, that there would be a huge outcry if something like that were to happen. But the reality is that most disabled people’s organizations are run by non-disabled people. Why is this acceptable?

Caroline: I think we have to start by differentiating the disability charities. The big traditional disability charities are indeed largely run by non-disabled people. Disabled people’s organisations or deaf and disabled people’s organisations are run by deaf and disabled people. That’s a bit of a differentiator. And the reason it’s happened like that, because the disability charities have been around for far longer, is for a start. Forty or fifty years ago, a lot of disabled people were institutionalised; we culturally had even lower expectations of what disabled people were able to do. And I think that there is still something, even if it’s unspoken or unconscious, where there’s still doubt around disabled people’s competency. Now, that might sound surprising, but we did several focus groups last year as part of a project to try and understand how different messaging lands with the general public.

It was really interesting because, firstly, some messages landed okay. There was a certain amount of openness around equality and rights for disabled people, but the message that landed least was when we said something like, “Disabled people are best placed to lead their own organisations.” There was actually a lot of push back. That might surprise you, but there really was. People were really uncomfortable about that. There’s a belief that it shouldn’t go to a disabled person; it should be the best person for the job. And we’re like, “Hey, so we’re saying that a non-disabled person might know better than a disabled person?” Okay, so that’s what you think. And people were even more explicit like that. But it’s just not a good idea. One lady specifically said it: “You couldn’t have somebody with mental health issues leading an organisation.” And as a bipolar CEO, that’s quite hard to hear and quite amusing also, because in her worldview, I probably couldn’t exist. But there is still a lot of expectation that disabled people will be passive, and that’s still something that we’re on a journey as a society to change.

Sudha: I think it's a lot of it like you said Caroline, is linked to the idea and that's like really embedded in most of us is that it's a competency issue. You can be one or the other.

Caroline: Absolutely. And the flip side of that is Oh if you appear to be quite competent you were never that ill or you're, you're not. People really can't hold the two thoughts together.

Sudha: Yeah, again, very enlightening and interesting. Disabled people, like any disadvantaged group, are not a monolith. What would your advice be on how best to communicate with them? I would always start with being open, respectful, and non-patronising, because unconsciously we tend to patronise people, and this is how we start. But what are the things actually I’d like to hear? What would your advice be?

Caroline: Okay, no, interesting question. I think the first thing to say is that a lot of the time you won’t even know if you’re talking to a disabled person because things are not always visible, and many disabled people won’t have any specific communication needs anyway. Beyond that, it’s really not one size fits all. I mean, start with thinking about things like, in the workplace, remembering that you won’t always know if you’ve got a disabled colleague.

Ask before meetings if people have any access issues. Do that in recruitment as well; give people time to prepare. I had to really work hard on that because I tend to do everything a bit lastminute.com, and I’ve had to really try and retrain myself that for some people an agenda a couple of days in advance makes a huge difference to their ability to contribute.

Think about just practical things like, if someone is trying to lip-read, don’t cover your mouth while you’re talking. If you’re talking to somebody with a learning disability, try and be simple and clear. But please try not to talk to people like they’re children; be age appropriate. Obviously, it’s different if you are talking to a child, but don’t talk down to adults.

Don’t ask intrusive questions and don’t make assumptions about other people’s quality of life or their abilities. Because I think some people get so tired of hearing, “Oh, you must be very brave,” or “What happened to you?” And I mean, it’s just like, you think that the first person that said that—just don’t be that person. Don’t do it. Don’t do it.

Sudha: Yeah, that is true. And I guess the other thing to do is one of our speakers said this at a conference is that sometimes, it's, good not to try and fill silences be comfortable when you are with people generally.

Caroline: Yeah, I think that's good.

Sudha: What can the private sector do to attract and retain deaf and disabled candidates? We know that representation or their participation in jobs is hampered because of how we are currently structured. How crucial is the private sector to opening up more opportunities, so that people can, fulfil their potential or work to their potential.

Caroline: Absolutely, I think the private sector does have a huge role to play and there is support out there. There are specialist job sites where you can advertise for disabled candidates, and there are organisations like our own that can give you advice...