Diversity and Ability (D&A) is a UK-based social enterprise led by and for disabled people, i.e., 85% of their team self-identify as disabled or neurodiverse. Their aim is to support individuals, organisations and social justice projects to create inclusive cultures.

We spoke with Brian Lutchmiah and Piers Wilkinson about the work and achievements of their organization and their upcoming inaugural congress in December. Brian currently works as an Education Consultant for D&A and acted as the Manager of its Inclusive Education Team until recently. Piers is the former National Union of Students (NUS) Disabled Students’ Officer, and now supports the work of D&A as the Policy and Campaigns Lead of the Inclusive Education Team.

This is the second interview of our two-part special featuring D&A. The first part featuring Piers Wilkinson focuses on UK Disability History Month, which runs from November 16 until December 16, 2022.

Note: The statements and opinions contained in this podcast are solely those of the speakers.

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

First of all, could you please tell us a little about diversity and ability? What does your enterprise do? What are your aims and what do you do to achieve them?

Piers: Diversity and Ability is a disabled-led social enterprise. For people that don’t know what that is and are not based in the UK, it’s an organization that is run by and for disabled people. That’s our ethos and one of our mottos, and it’s done in the interest of social good. So, social justice and social campaigning and achieving impact. We’re about 11 years old now. We celebrated our 11th-year anniversary a little while ago, and we started off as an assistive technology training organization brought together by disabled people who saw that there was very little quality in specific support that was provided for disabled students in education regarding the use and uptake of assistive technology, the pedagogy of it all. And from there we’ve grown massively.

So, I like to say now that we are an organization that supports everyone and anyone, from the United Nations all the way down to your local corner shop, on improving and getting better at engaging with and supporting disabled people, whether that is young disabled people entering school for the first time or people that have just acquired a disability in the last couple of years due to COVID. No matter what your area of life is, we want to have an impact on improving society and improving things for people like us, as well as so that we leave the world a better place at the same time.

Brian: Just picking up from what Piers was saying, I think there are kind of three avenues that we do work through. One is around education and a lot of the work that we do in terms of impacting on the practice around particular elements of inclusion and expanding the whole continuum of education both in the UK and wider. We also do that work, as Piers rightly mentioned, with workplace and employers. So, thinking about the impact of need for students progressing into industry or for those who are disabled working out in the employment sector. And then the third element is working internationally.

So, thinking about the right to education. And again, it was mentioned about our work with the UN, so thinking about the sustainability development goals, and in particular I think it’s point number four on their SDGs, which is focusing on inclusive education and the right to inclusive education. So, across those three arms of D&A, that’s really the fundamental bridge that spans all of those services that we offer.

 

And when you look back at these 11 years of your history, what have been D&A’s biggest achievements so far?

Brian: I think there’s one yet to come, which is our conference happening in December. And I think that’s almost the zenith of an 11-year level of progress and development and growth for D&A in the space that we live and breathe in. But yeah, you kind of mentioned something there, Piers, about some of the successes we’ve had alongside.

Piers: So one of the things that I’m quite proud of as someone that comes from a background of being an oceanographer and a statistician, a lot of the work we do at D&A is not pinned down to the financial element. We are always focused on what is the impact, what is the culture change, what is the future and sustainable goal that we want people to work towards for supporting disabled people. But we were very fortunate only a little while ago, a couple of years ago, of being the focus of a social cost-benefit analysis. So, they independently looked into the work that we were doing and the social impact that we tried to achieve and said, you know, if we look at things in the brass tacks of things, what is the financial benefit as an organization that you do?

And amazingly, they came back with a figure that just astounded us that for every pound that is spent on the work that we do, we return about GBP 16, GBP 16.5 worth of cost savings and financial reinvestment into the economy of the UK, specifically for what we do specifically. So, for an organization whose primary focus has never really been “What’s the financial aspect?”, because we’re a social enterprise. Any money that we do make goes right back into the grants and the offerings that we create. To have that given back to us really made it so that our ethos and our way of working to be focused on the individual alongside the institution, to ensure that everyone thriving is actually financially fine as well. It actually makes sense fiscally. And that was done outside of our input and involvement. They just looked at us. We provided the information about what we do.

I think that, for me, is a really big achievement for D&A because we can win awards when it comes to culture, we can win awards, and we’ve got a plethora of them to a degree. But for me, it’s when the aspects of the things that we’re not really that invested in, which is the “Is this financially workable?”, besides continuing to exist but really being recognized for something that we inherently do just through the nature of the way in which we work, truly meant something to me and Atif, our CEO, as well. Once we’d worked out exactly what social cost-benefit analysis meant, because it wasn’t an easy task, all of the research was really such a big deal for the work that we do to be sort of recognized. It’s a good thing as well as an ethical thing to do and everything that we do.

Brian: And just to pick up on that as well, you know, over 85% of our staff team have lived experience of either being disabled, have a long-term health condition or being neurodiverse. And I would say that’s one of our major successes because living and breathing what we do, but also producing a platform for the voice of affected people, whether they’re disabled people, but actually thinking about social justice in its broadest sense of ensuring there’s a voice and a platform for everyone on an intersectional level. That’s always been part of our value set, and it’s something we’re particularly proud of.

And particularly when we are working with organizations, we’re not there to say: “You must be doing this because this is best practice and this is the right thing to do.” We’re able to say that with confidence because the work and the services and the offer that we provide has been designed very specifically by those with lived experience who have had the direct knowledge and experience of life as a disabled person, someone with a long-term health condition or being neurodiverse. And that, for us, leads not only to delivering something of value, but has a long-term sustainable element to it that impacts on the wider populations across our society.

 

Tying in with that lived experience being brought to the table, can you please explain the dual approach that you pursue? That is where Diversity and Ability combined the provision of a toolkit with the development of training.

Piers: The dual approach is something that I headed up a research project on specifically. A lot of what we do at D&A, we mentioned, is based on that lived experience, and it’s important that we connect with people to see what really would help them. So, we routinely have feedback mechanisms, conduct research in a way that allows us to develop our services to make sure that we meet the needs of both the community that we are from ourselves, but also the clients in the goals that they want to achieve. And what’s come out of that is an approach, this dual approach, which takes a look at the main issues that somebody might encounter within an institution, which is there are things available for them to apply for in the UK.

So, we have things like disabled students allowance and access to work which provide government funding for adjustment provision and costs. But they’re user-centered, they’re user-focused, and it’s navigating that as an individual that can be quite challenging. But at the same time a lot of work has been focused around that. However, there are aspects in my life as a disabled person that I know is well outside of my control. I don’t have the control of who designed the building that we work in, who designed the policies that the company uses, or who designed how the cafeteria space is laid out. Even these small things as a wheelchair user can be quite challenging when you want to go and make a coffee, and there’s a bunch of tables in the way. There are things that are outside of our power as individuals, and that’s what the dual approach recognizes.

It’s working with the institution, building culture change, building understanding. We don’t like to say we’re building awareness of disability because we’re 20% of the population. You should be aware we exist. Instead, we like to say we’re changing the way people understand disability. So, it focuses on the barriers and the issues at the heart of the matter, rather than any one individual or medical condition which should stay between the disabled person and their doctor, not their employer. The employer just needs to know what’s going wrong, how can we fix this? But at the same time equipping the individual to be able to have those conversations with their employer or with the education institution, to know their right, to know what funding is available, but importantly, how to get it. Because these processes are time-intensive. The number of hours a disabled person puts into just administrating the grants and funding that is available to them every week is monstrous.

So, that’s what we do, we look at the heart of the matter and we go, yes, let’s look at the power, the dynamics of where they are and the institutions they interact with. But let’s also equip someone via a toolkit with an interactive podcast-y, video-led multimedia resource that enables them however they best want to engage with the things that are within their realm of being able to engage with. Whether it’s the government grant fund schemes or just advocating for themselves. And we found, through the research that I headed up, that that is an approach that resonates a lot with disabled people in our community because they want to get better at advocating for themselves. They don’t want to lose that independence that control over what they have control over. They also get validated in their feeling of: “It’s not just my fault. I’m not just being difficult. The institution I’m working with doesn’t quite know its stuff.”

And that’s the dual approach. It’s taking that training, it’s taking that institutional culture change and empowering the individual, enabling the individual through the toolkits, the guides, the videos, the training montage, as it were, that you might see in a TV show and putting it in a place that’s freely available online on our website so that it doesn’t come at a cost to the disabled person and instead reinvests the money that we garner from the institution who take the training services and puts it into these projects so that the disabled person is never the one that has to pay for things.

Brian: And also, just picking up on something that Piers mentioned, which is inordinately disabled people have to jump through very complex hoops in order to get any level of entitlement or level of support. And so kind of having the aspect, as Piers has mentioned, around an accessible level of toolkit to simplify those processes is as important as what I would think governments, including the UK government and maybe wider, should be considering in terms of “Actually, why are these processes so complex? Are there simpler ways for disabled people to navigate the process so that they get their entitlements at the end in terms of their outcome?”. And so, the provision of a toolkit is in the instance where we live in a complex society, that means that those steps for disabled people are going to remain complex until they’re reviewed or enhanced in some other way further down the line.

 

And now we talked in general and could we just have a look at a particular field, which is healthcare? How can healthcare be made more accessible? Both for disabled patients and disabled learners and workers?

Brian: I would say access to information and the readiness of the access to information, both in terms of, I suppose, the varying formats. Universal terminologies. So, ensuring that information, advice and guidance provided to patients is clear and readable and understandable and not too jargon-heavy. And this feeds into the social model of disability where we know it can be the environment that disables the individual. If we approach any piece of work that has an impact on populations of people, that should be the approach to be taken, which is actually how do we ensure the environment is right. So, ensuring that literature advice and guidance is clear and simple and easy to access is a real big part of that.

And again, this kind of extends not only just from publishing and literature, but also through to the working environment. Thinking about clinical settings, thinking about GPs and hospitals and medical practices etc., and how they’re kind of set up in order to meet the needs of the varying community of people that access their respective services. And Piers rightfully mentioned earlier on in the recording about kind of being a wheelchair user and some of the aspects that need to be navigated. And I have lived experience of being with Piers and observing, with an offer of assistance, as always, but observing Piers and having to navigate actually quite complicated elements in order to get from A to B, whereas as a person with no physical mobility, I don’t have to do that. And so there’s aspects of thinking about environmental factors, as they are just as important as any in that process. Is there anything you would add to that, Piers?

Piers: I can add some specifics, I think, for the UK context. I think Brian has touched on the more holistic aspects of what needs to change within healthcare, but specifically within the UK, understanding within the medical professions, of the social and environmental aspects of disability, as Brian has just touched on, is incredibly important to both reduce the amount of bullying and harassment and inaccurate reporting that goes on within the UK medical field. If you’re a disabled doctor, you’re more likely to be reported by a colleague than you are a patient for not being able to do your job. And so there’s this cultural issue in the heart of healthcare where just saying you’re a disabled person as a professional can cause you to face barriers that if you had just been “quiet”, you wouldn’t have faced in the first place. So, it can end up being this duality of all: “Are my barriers due to my disability enough to warrant the risk of disclosing?”

And we do have a disclosure gap in the UK. The electronic staff record that the UK NHS has, for example, only has around about three, three and a half percent on disclosed record identify as having a disability. And the anonymous staff survey is from the unions. So, that number is 19%. So, we really do have a disclosure and culture gap within the UK healthcare professions, and if our doctors don’t feel comfortable talking about disability in their own workplace, given that they’re the experts on medicine, on the barriers, on my experience due to a condition I might have, how can we expect patients to enter into these environments and feel comfort and enthused to engage with the medical professional if the professionals themselves can’t operate freely?

The second aspect, I would say, is the state of education and the state of healthcare needs to rapidly update because if your computer is old enough that it can’t handle assistive technology and the software providers that provide for the hospitals haven’t updated their software to comply with the digital accessibility regulations that I know in the EU you have because I worked on bringing it into UK law, haven’t complied with that, then assistive technology isn’t going to work. Even if you do get through all of the hoops and the hoopla of engaging in disclosing your disability and you’re trying to get your assistive technology funded and you finally have all of the adjustments that you want. If the software that the system uses cannot integrate with the quite expensive assistive technology, as a user myself I know how expensive it can be to get started on AT, then it kind of makes it all redundant.

And that’s one of the things that came up. I remember talking directly to a disabled nurse who was saying that they absolutely love her job. They’re fantastic at their job, in the practical sense they excel. But then when it comes to actually filling in all the paperwork that comes with being a healthcare practitioner, that’s where the stumbling block because all of the funding that they have doesn’t help them with the fact that third party software doesn’t integrate.

And I think it’s those structural issues of culture and system design, quite specifically when it comes to software system design, that I think underpin a lot of the barriers that medical professionals in the UK face when navigating. So, it means if you go on placement when you’re not quite an employee but you’re not quite a student and you’re in that limbo situation where you can’t access these government grants sometimes, then you are in even more of a precarious situation and it’s a placement that’s critical to your continuation in your field.

And so it all sort of has that domino effect when we don’t get those small things right. It might seem not too big of an issue. When was the last time we updated our computers? When was the last time we changed our procurement policy to ensure that they’re complying with digital accessibility regulations? These are very small, minor questions, but they can go so far and have such great impact. But it’s having those conversations that I think the UK healthcare industry in particular needs to start having so that the burden isn’t on the individual to fight and challenge within their trust or within their sphere of influence. Alongside, obviously, what Brian said about the holistic aspect of healthcare change.

Brian: Yeah, I mean our CEO Atif Chowdhury once stated that inclusion moves at the speed of trust, and I think that’s a really pertinent one because it takes time to build trust and for certain areas of our communities, trust will be something that will need to be built and grown. And so that aspect between people, disabled people using healthcare services, there’s an element of trust that needs to be built over time.

We all know that trust can be broken at the click of a finger. It only takes one thing and everything can unravel as a result of that. And so using that precept of “Okay, what are we really trying to do here? We are trying to build services across healthcare, across all provisions, regardless of country, about trust in our healthcare provision, trust in the services that we offer, trust in the specialist knowledge and expertise and support that you will gain as a result of using those services.

But if someone has a poor experience, whether it’s from a customer service point of view or misdiagnosis or an elongated timeframe to diagnosis, trust can be broken very, very quickly. And that’s a precept that we know across our streams of work through D&A, both in education and in employment. We know it’s something that transcends society as a whole in that aspect. So, yeah, true inclusion means that the speed of trust is something that’s a core belief for us at D&A.

 

You already mentioned the conference that’s coming up and that takes place in Brighton on December 5 & 6. And the motto of the conference is “What inclusion looks like”. Would you like to tell us a bit more about the conference, its topics and pillars and why you chose that particular motto?

Brian: Absolutely. Firstly, we’re really excited about this conference. It’s our inaugural conference. As we kind of mentioned, we’ve been around for about 11 years, and it’s been a long time coming. And as we’ve grown, so is our reputation and our voice as a result of that time frame. So, the conference that we’re holding, we’re excited because it’s in person. And given the last few years that’s such a brilliant thing. Just to be in there in the company of professionals that both work in and across industry and workplace, but also in and across education, and bringing the two together within one environment. So, that’s something that we feel is really special about the conference that we’re holding, both in terms of the continuum through education, but then again into employment and industry. And there’s part and parcel, it’s kind of partly celebrating our 11th birthday or anniversary, I would say birthday.

And in terms of your question about what inclusion looks like, you could have a question mark to that at the end of that sentence. So, it’s like: “What does inclusion look like?” And if we’re thinking about inclusion in a very linear sense, when you say, “Well, inclusion is simply about supporting disabled people.”, we’re missing the intersectional element. We’re missing the ritual aspects of being human. And there the aspects that we are bringing into this conference, we’re not just saying “This is a conference because we are disability specialists, and this is what we do and what we’ve always done.”, what we wanted to do was showcase that, actually, there’s the lived experience and values that that brings to change and impact, but also celebrating intersectional elements that make us who we are and what we can bring and give.

And we have pride, I think, in our relationships and our partnerships with employers and education providers nationally and wider, in terms of the aspects of the transactional relationship, in terms of “Okay, we’ll share our learning”. And also we get learning as a means of response. And so for that, we know that as part of the work that we’re doing and continuing to do, we are able to amplify the voices of those that are impacted by decision making as a result of involving them in the decision making process. And that’s really the main core precept behind this conference and why we have decided to not only launch our very first conference, but also launching it in the period during Disability History Month as well.

Piers: I will specifically say that we have really, truly fabulous speakers coming to the conference to speak. From the education side, we have the Disabled Students Commission, and whilst I can’t say too much about who will be speaking because I am a commissioner and I’m bound by not revealing too much, I do know that it is one not to miss for sure. We also have Health Education England through our partnership work with the NHS coming to talk about some of the issues and solutions to the issues I mentioned in the previous question around health and supporting health professionals and learners in particular during transition.

We have UK CESR. I always butcher their acronyms, so if they’re listening I can only apologize, who are the organization that advocates and supports international students. They are coming to discuss their new charter. So, if you’re an educational professional, it’s really not a conference to miss. I can tell you that. But then because of the uniqueness of D&A and the fact that we don’t want to limit ourselves to just one factor, we have organizations like Transport for London. So, anyone in London knows about Transport for London. We have Fujitsu. We’ve got international companies here we’ve been working with for a while coming to talk about the work that they are doing within the employer space. And internationally, we’ve got partners from all over the world coming in from institutions to talk about for them what inclusion looks like and the work that’s been going on.

So, it’s both sharing of good practice and how they got there and where it got to. You know, we could have just done an education conference, we could have just done a workplace conference or we could have just done a social justice conference. But really, as a disabled person, we’re not unique in each of these areas. Our lives encompass every single area of social justice, the environment, everything to do with workplace. We will, fingers crossed, be entering the world of work, regardless of your disability and to get there education is critical. So, inclusion has to include all of those aspects rather than siloing them down. And that is why we sort of came up with the “What Inclusion Looks Like” conference.

And once again, I’m going to be quoting another quote from our CEO. I firmly believe in this, which is: “Diversity is counting people. Inclusion is insisting people count.” And that is why we like to use the word inclusion, an inclusive campus and inclusive design alongside universal design, rather than just talk about diversity. Because I think quite a few people have gotten a little bit jaded by the talk of diversity when inclusion hasn’t progressed alongside it. And that is why the conference is titled the way in which it is and why the conference is so broad but so useful regardless of the field in which you currently work in.

Brian: And the other element that will come out of the conference, and this is something that we’re really excited about as it’s taken a few years in terms of development. It’s the formal launch of the Accessibility Passport, which is going to be formally launched and will be open to anyone and everyone to potentially use. So this will be formally launched at the conference and is part of the “What Inclusion Looks Like” theme, because the idea of a digital passport, as an example, is it will be held by any individual throughout their life. Whether it’s in educational or in employment, and will be something that acts as a repository for any adjustments that they may need during their life, whether that’s in work, whether that’s within education, whether that’s within social life perspective, or whether that’s accessing medical services further down the line. So, this is another really big aspect that we’re incredibly excited about, and we’re just excited to share it, really, in all fairness. And the simplicity of it is beautiful, but the impact on it is much more so longer term. If we can get that message out there and get as many people to use the system as we possibly can.

 

What does inclusion look like in the UK in the year 2022 and what should it look like in your opinion?

Piers: I think for me, what inclusion should look like in the year 2022 is, as a disabled person, I’m seen for everything that I am, despite or without the barriers that I encounter due to my disability. And importantly, I know we’re not a utopian future quite yet within the UK, so I understand that I will always need to have that conversation about adjustments. But for me, inclusion is about the fact that I might need to only have that conversation once and I should only have to have a conversation once. I shouldn’t have to remind anyone. And that’s where the passport that we’re launching at the conference is so amazing. I love it to pieces already, it’s because I can just email it to someone digitally from my phone, from the app, and I don’t have to have that conversation again because I can just tell them, check my passport. It’s got all of the information you could ever need on there, plus all of my notes specifically for you.

And if that person annoys me and they don’t do what I ask them to, I can just unsend it to them. I can just remove their access, and that independence and that critical component of not having to repeat myself over and over again, I think for me is what inclusion in 2022 must look like, is centering independence and centering being listened to and understood. That first time when asking for support because it ain’t easy asking for support as someone that can be quite stubborn at times when I really should ask for support. That is, I think, for 2022, that is that goal. And then we can get to the utopian future in a couple more years.

Brian: And just to kind of feed off of that. I would say in the UK we have the Equality Act, which is a lawful binding document for society in the UK. As part of that there is something called the anticipatory duty. So, part of their anticipatory duty is that all organizations should expect that there will be communities accessing their services or that provision with their own needs. Quite simply. So, to anticipate what those needs might be and ensure that they’re fit for purpose to meet the needs of those people is a really important part and is a public duty.

I think one of the aspects, and I don’t think it’s limited to the UK, I think it’s probably much more global than that, is there’s a lot of assumption as to what people need, what disabled people need. And someone once said to me: “To assume is to make an ass out of you and me.” Feel free to edit that out, by the way, but it’s a play on the word, but it really does make sense. And there’s an irony behind where assumptions are sometimes used, particularly when working with disabled people and people from varying communities, that the assumption actually gets in the way of good, solid conversation, discussion. It’s much more evidence-based. It’s much more based on facts and knowledge of where that individual, that person or that group of people are at.

So, that level of assumption or those levels of assumption, I think, is something that we all should care about and share in terms of actually “How do we work together to limit the risk of assumption happening within and across our industries?”, whether that’s in education, within healthcare or wider industries, in such a way that we meet the needs of those with lived experience much more, but also including those voices in the design of. Because by doing so, the longer term aspect is you’re going to meet that anticipatory need and duty by virtue of including people in the co-design of those services. That’s kind of my aspect.

 

Many thanks for your insights and for the interview.

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