Everything You Wanted To Know About Disability But Were Too Afraid To Ask

In this episode of the Inclusive Growth Show, I was joined by my colleague, Luis, and two clients, Mica and Jeremy who both work within EDI in the UK National Health Service known as the NHS.

The NHS is a huge UK-wide organisation and the North East London Foundation Trust is part of it. Mica and Jeremy, who work as part of the EDI team, asked my colleague Luis to come in and deliver a talk for colleagues at the NHS entitled ‘Everything You Wanted To Know About Disability But Were Too Afraid To Ask’. In this conversation, Mica, Jeremy, Luis and I discussed the impact of giving that talk and the approach they take to developing inclusion in the workplace.

Before we dived into the conversation, I asked Mica to introduce herself and her background as well as tell us a bit more about what she does and which part of the NHS she works in.

‘My name’s Mica McDonald. I’m the Team Administrator for the Equality, Diversity and Inclusion team in NELFT which is the North East London Foundation Trust. I’ve been in this team for two years now, and I’ve been in healthcare for around ten years. I started out working in a mental health ward as a support worker and then worked my way into doing senior support work and then working across different roles such as personality disorder and psychiatric intensive care. I then branched out into the administration side because I was always providing that sort of support. Here we are now, ten years later, I’m in the EDI team and I love it.’

I turned to Jeremy next and asked him for a bit more about himself and his role at NELFT.

‘I am new to the EDI team. I’ve only been here for some months. My previous role within NELFT was my first job in the NHS and it was in corporate communications. I was the sole designer for the whole trust. So, with about six and a half thousand members of staff at NELFT, I created and delivered all the communications with the team. But I migrated over to the EDI team because they were fun and they had Mica in the team and the opportunity to meet great people like you.

The reason why I joined NELFT and NHS, in general, is because we have diversity. We have such a broad scope of staff and users of our service that I just love it. My previous role in life has been as a freelance designer working in corporate roles. I love working in small teams and EDI with Mica was a perfectly formed small team delivering really good high-quality training and awareness sessions and that’s how we met you, Toby, because you were booked in and delivered a fantastic series of talks for us and you’re going to do more in the future so, fab.’

Mica added, ‘I equally love Jeremy and it doesn’t feel like he’s only been in the team a few months. I refuse to accept that piece of information, so we’re twinnies for a reason.’

Jeremy chipped in, ‘We bounce off ideas together and I think that makes us a really fantastic team. My philosophy throughout my whole life has been that no idea is a bad idea. Whether it comes from a cleaner, a chief exec or from your fellow colleagues. Mica and I have had such a good bounce of ideas between us.’

Mica interjected, ‘It’s because we have that passion and it links in so well, with the sessions that you deliver, Toby and Luis. What we want to continue doing is work together because I think we all have that passion and we have those similar qualities.’

At Mildon, we’re a team who are passionate about this and it’s so lovely for Luis and me to work with like-minded clients who are also passionate about it. What the reader won’t know is that Luis and I have the same disability. We’re both wheelchair users and we were both born with a genetic neuromuscular disability called Spinal Muscular Atrophy. One of the things that we talked about in our NHS sessions is how we have unique lived experiences of that, including the intersectionality between disability and nationality.

I invited Luis to come in at this point and introduce himself and a bit about his background.

‘Thanks, Toby. I do feel like an extra special guest! I joined Toby’s team early last year. My background is not D&I related, but it is very much around working with people, predominantly in business development and sales. I seem to have found a good spot in my career where I feel like I am getting a return on investment for the time that I’m putting in behind my desk. I get to help organisations understand the dynamics of disability and help them support people within their organisations that have disabilities and for me, that’s a privilege.’

I don’t know if any of you have ever come across the work by Simon Sinek. He’s a bit of a management guru and he wrote a fantastic book called, ‘Start With Why’. He says that people don’t buy what you do, they buy why you do it. I asked Mica and Jeremy, ‘Why did you ask us to come in and do a couple of sessions around disability inclusion for you?’

Jeremy said, ‘Well, first of all, you’ve written a fantastic book, ‘Inclusive Growth’ which was my catalyst for understanding disabilities and certainly from my limited experience, the fact that diversity includes everyone. Your story and your opportunity to explain that diversity in the workplace should be embraced is a positive message. To bring awareness that everybody can make a positive contribution to every workplace and every opportunity to meet different people, that’s where I saw your session with us bring that to life.

As you say, a concept is fine but you’re buying from people, you’re buying into the personal story that people have. That’s how I respond and that’s how colleagues at NELFT responded to your talk. We resonated with how you, I wouldn’t say battled, but how you wanted to raise your whole profile and contribute to the workplace. I think that’s an excellent attribute and we’ve taken that through to other things that we’ve done within NELFT and you were the spark of getting that going. Between yourself and Luis, I think that your voice in our working community is absolutely brilliant and inspirational. That’s why I think the book ‘Inclusive Growth’ is fabulous.’

Mica responded saying, ‘To follow up what Jeremy said, I think it’s powerful when you have people’s actual own experiences because we can all talk or read from something and go by facts and figures that we find. But actually, when you talk about your own experience, it’s how you then resonate with people and that hits you. It’s more powerful.

I think it’s also that little bit extra special that you both have the same condition, you and Luis, but you have your own perspectives, your own different stories about how you came to where you are now and where you started from and your experiences in your life. I think that is immediately so engaging and that’s why it adds to the buy-in from people. When people join your session, they’re like, “This isn’t just any old training.”

I asked Luis to touch on how our personal stories are different and how we communicate that in the training.

‘The twang in my accent is because I am originally from South Africa and that presents a whole different set of barriers in comparison to Toby’s life growing up and the career that he’s developed. We share our stories because it allows people to kind of get into what it was like for us growing up and trying to find our place in the world and putting our imprint on the workplaces that we were involved in.

When I look at my life and my career, most of that has been barrier orientated. So, there are a lot of gaps in my CV and there are a lot of interviews where I was actually the perfect person for the job, but because the work environment couldn’t cater to the requirements that I need around my disability, I never got the job. And the infrastructure in South Africa is not what it is here in the UK. So that played a role in how I progressed in my career as well.

One of the major differences is that Toby comes from a country that has had a lot of advocacy for people with disabilities in the past, that are now starting to have ripple effects. People who did amazing things, convincing government to really take us seriously as individuals and as people that matter. In South Africa, that’s not the case. I mean, there are people on the front lines, but their voices are not being heard as loud and clear as what we see in Europe, in the UK and in the US.’

To follow on from what Luis said, one of the things that I think is particularly relevant for the NHS is linking healthcare with privilege. I was born in the UK where we’ve got free healthcare at the point of need. The NHS has sustained and saved my life on more than one occasion. But having that kind of healthcare safety net has meant that I could go off to university. I could get a job in the city which led to me working with companies like Accenture and the BBC. But growing up in South Africa, Luis had a very different experience of accessing healthcare.

Luis agreed. ‘Absolutely. Whilst there is a government healthcare system in place, it’s a really poor system. It’s hard to get access to things that you need. When I look at when you want a high standard level of care, which is really required for our condition, I had to have private medical insurance, which cost £300 a month just for myself because I have a pre-existing condition. But also, there is no access to life-changing medication like there is here in the UK, Europe and the US. I’m on a new treatment for SMA, like Toby is and that would never have been at my disposal in South Africa. I would’ve had to have been a multi-multi-millionaire to be able to afford the treatment.’

Mica said, ‘That’s empowering for people to hear. It’s another way it resonates and relates because not everyone has the same circumstances. They’re not all in the same place and everyone has different things that shape their lives. To not let that be the winning factor, you said, “No, I don’t accept this,” and you overcame those challenges. Of course, there have been other challenges, but you overcome some parts of it. I think that speaks to people that have had something similar or maybe aren’t aware that might happen and then it speaks to them on that level.

When we first heard your stories, I remember people were saying, “We need this. Why aren’t more people doing this? We need this again.” A lot of the feedback was that we should have this rolling out to all managers. We put out anyone is welcome to join it but the feedback was saying, specifically, we should go for managers having it first as like a starting point and then try and get more people to do it, because it was that important.’

I was interested to hear what Jeremy’s thoughts were too and what he noticed about colleagues’ feedback.

‘It’s interesting because the feedback that I got was around that lived experience of all the challenges that you faced. I think the important thing for us as an organisation, as NELFT and for staff that work within the NHS, is not to be afraid of confronting disability and accepting disability and working with people with disability. I think it’s very easy for people to say, “Oh my goodness, am I going to be offensive the way that I address you or the way that I approach you? Are you going to take offence? Am I going to say something that’s inappropriate?”

I think what colleagues took away from your lived experience was the fact that we are people. We make a positive contribution. We think exactly like you but we have a disability which like you were saying, Toby, the NHS has guided you through and helped. That session was to dispel that fear of a disability. And that to me was the crucial thing. We’ve gone through the Disability Confident process, which is a government-backed scheme where we develop our disability approach as an organisation. We were very fortunate that last year we had Disability Confident Leader status. That means that having gone through two or three different layers of awareness and training for our staff, we are at a leadership level. So, we are very proud of that. But it’s NELFT as a whole that has embraced disability. And we can learn from you, but we can also impart our knowledge to others. Our staff have really embraced that. Your session, your awareness embraced all that ethos of what Disability Confident contributions can make in the workplace.’

I’m pleased that NELFT have got to that Disability Confident Leader Level 3 because not many organisations get to that level. It is something that we talked about in the presentation. The Disability Confident Leader standard has two asks of an organisation. One is “How do you attract and recruit disabled people into your organisation?” The other is, “How do you retain and develop disabled people?” In the talk, we shared some examples of what that good practice looks like and I was interested to find out what NELFT has been doing to attract and recruit disabled people to come and work there.

Jeremy replied, ‘Only yesterday, we had a new starter at NELFT and she has impaired hearing. An email was sent to the EDI team which said, Can you supply a BSL sign interpreter so the candidate could go through the interview process?” The whole idea behind our Disability Confident Leader status is the fact that we try and make the whole interview and induction process equal for everybody, whatever disability they have and whatever diverse range of staff that we have. Having a BSL interpreter on-site and on hand is a real bonus. As an EDI team, we have a huge amount of resources covering all nationalities. Whether it is sign language or whether you speak French, Latin, or Swahili – it’s all there.

But in this case, BSL is a campaign that Mica has championed. We should all be aware of British sign language and offer just a little bit of breaking down those barriers between users of our service and ourselves. That breaking down of the barriers is so crucial for those first five minutes of offering a service.’

Mica agreed. ‘Following on from what Jeremy said, when you break down those communication barriers, you can immediately connect with somebody. It helps you build rapport as well. And then just to add to what you asked Toby, that’s one of the ways we want to recruit people and we encourage people with disabilities to come to us. We want to be their best care, by the best people.

We also have a health passport. People can take that throughout their entire NELFT career and it’s something for them. Our passports will get us in and out of the country basically and this is the same. Whatever needs and support you have, you put that in there and you take that and you go to your line manager and that supports you throughout. That is your tool basically.

We’ve recently developed a mental health passport in the same vein. Again, our approach is we absolutely welcome it and we’ve got a lot of support available. Again, we talk about it in our induction presentation. We talk about all the networks that we have regarding the protected characteristics. That’s how inclusive and diverse we are. And we want people to not feel afraid. If there is a barrier, then we want to push through it.

We are not sitting being complacent. Like Jeremy said, we’ve got this massive idea to do BSL. It started out as a little project and I started learning it and there was our group, our cohort one, then we had a cohort two, then we got put on the next module. Every time we talk about it, we get an influx of people saying we want to learn BSL. And it’s amazing. I love that it’s generated so much and it feeds into Disability Confident Leaders, and it feeds into all our networks that we have. The Hearing Support Network that we have is quite small and we want to build that up because the Disability Network is a really popular network. We have great attendance for that. This BSL, it’s been such great learning it as well and we get so much positive feedback from the people that have learned it.’

Jeremy continued, ‘Yes, what’s interesting is the fact that we’ve got something like one hundred and twenty people on a waiting list. We have clinical staff and corporate staff right across to our accountants and admin support staff wanting to learn BSL. We’re never going to be BSL interpreters, in much the same way that we personally don’t live a lot of the disabilities that we have in our Trust. But making that little bit of difference goes a long way. I mean, I have glaucoma. I’m slowly going blind, but looking at me, it’s a hidden disability, nobody would know. But the more I talk about it, the less fearful you are of the whole thing. That’s why we got you in Toby because you are spreading the word that whatever disability people have, they can all make a positive contribution.’

Mica added, ‘What would help encourage me would be if people with a disability say, “Oh, I can see trust in that organisation,” It’s not just senior people, it’s all staff. There’s someone there that you can see that you can identify with. I think that helps. Again, you think, “Okay, I feel safety.” That encourages people.’

In the talk Luis and I give, we also cover some of the misconceptions about employing disabled people. I asked Luis, ‘Do you want to share what some of those misconceptions and what the flip side of some of those might be too?’

Luis replied, ‘I love doing this part of the talk because I believe it really helps to change people’s perceptions. So, one of the things we identify is that sometimes employers feel that they’re really frustrated and struggling to support their disabled staff because people aren’t identifying that they have disabilities. And that’s mostly coming from a position of people that feel unsafe and are worried and concerned about sharing their disability with their employers because it might negatively affect their employment. We also talk about some of the workplace adjustments that employers are concerned about and the fact that it could cost a lot of money to make those adjustments. But in reality, when we go to the flip side of things, workplace adjustments don’t really cost anything. It’s just about having a creative mentality about how your workplace and processes are developed. When we look at the cost of things it’s generally in the region of five hundred pounds if you are spending money on a workplace adjustment.

We try to encourage organisations to create an environment where people can feel safe and disclose their disabilities. It’s communicating that you want to know so you can support people better and not because it’s for a tick box exercise or because you need to disclose data in the report of how many disabled staff you have.’

Mica said, ‘I think that’s key. Sometimes things do get tick boxy and then that’s not sincere. It’s not genuine. Why do it? I think do it with dignity and good intentions and like everything you’ve said, I think do it because you want to do it because it’s important, not because, “Oh, we’re just going to do that.” No. That’s not the mentality.’

Luis responded, ‘Yes. And I think for organisations that are offering products and services to the public as well, when you have disabled employees as part of your workforce, it really makes it a lot easier for you to identify with the customers you’re trying to serve.’

Mica continued, ‘It’s surprising the feedback we get in our monthly induction presentation. Every month we’ll get someone who says, “I’ve never seen a team where there’s so much that you do.” We talk about reasonable adjustments; we talk about the external people that we’ve worked with like yourselves and the training that they provide and that links in with the networks. We link everything together and people are really surprised because they’ve come from places where that isn’t visible or even existing and they’re just surprised and relieved.

I guess sometimes that it feels safe because people will put in the chat or they’ll speak to us after and say, actually I do have a disability. Because like Jeremy said, he has glaucoma, he says that in every presentation. He’s very open about that. So I think that speaks to people.’

Jeremy added, ‘In the induction process that Mica and I give to new staff, we try and encourage everybody to be open about their disability. I think that as individuals like you, Toby, in your session, you were very open about your struggles and your disability. And I think that if you are opening up the conversation about having uncomfortable conversations, in the long run, I mean, certainly for me it enabled me to empower myself and not to be afraid of my disability, but it helps others to vocalise and come to terms with their own disability. It was during one of our induction processes for new staff that somebody said, “Well, I came from a previous trust and we have a badge that said I am autistic. Do you have that at NELFT?”

And remembering the presentation, where you said, Toby, to embrace change and embrace honesty. We thought, “This is a fabulous idea. Why haven’t we done this before?” What the person was saying, being autistic, if you are frontline staff, say part of admin reception, getting information from users of the service and asking simple things like name, address, contact details, why are you here? Sometimes, because that person is autistic. It takes a little bit more time. You just need to slow down the whole conversation. So, we are producing, “I am autistic” badges for staff so that anybody who has declared themselves or just feels that by saying, “I am autistic” helps staff and service users to break down that barrier. I think it helps the whole workforce. It helps the whole team spirit that we’re here for, to help users of our service. Toby, you were instrumental in pushing that understanding. So, for that alone, thank you.’

I’m glad that we could spark these kinds of conversations through the talk that Luis and I give, ‘Everything You Want To Know About Disability But Were Too Afraid To Ask’. When we think about all of the work that we do, these talks are the beginning of the journey for a lot of organisations. Raising awareness and increasing engagement about the topic of diversity and inclusion is where a lot of organisations start. I’m pleased to hear that the talk that we did for NELFT has been a catalyst for other things.

I asked Jeremy and Mica what is next in store for NELFT.

Jeremy replied, ‘When you start a new job at NELFT, the process is to make a declaration about your disability and your occupational health report. That goes to HR. Sometimes people disclose a disability. In my case, I have diabetes. When I first joined NELFT, I wasn’t on medication and I controlled it by diet, so I declared that. But over the four years I’ve been in the NHS, my condition has got worse. Now I am on medication and I disclose that. The more I talk about it, the more other people say, “Oh yes, I’ve got this condition.”

Sometimes some people need equipment or they need software. They need reasonable adjustments in the workplace and it can take a long time to get finance for these reasonable adjustments from the Department of Work and Pensions, the government department which administers Access to Work.

It’s a big headache for people who are declaring a disability. From a springboard off the back of your presentation, we said we want EDI to be the centre that can make change possible and make it simpler. That means us making it easier to get support for staff. We’ve taken that on board as a department and we will buy the equipment, facilitate the entire process and then claim it back from Access to Work. What we’re trying to do is speed up the process so employees are not waiting five or six months. In one case recently it was twelve months before Access to Work could reimburse them. That was from you, Toby, saying, don’t be afraid to think differently to make change possible.’

Luis and I have just been through the Access to Work process ourselves. And the waiting list before they even look at your application was twelve weeks, when we applied, so it’s not the fastest-moving process in the world.

I asked Luis for some parting words of advice for people interested in developing equality, diversity and inclusion in their organisations.

‘That’s a hot question. Toby. I guess the discussion today highlights the difference that being open and communicative with the people around you can make. And when we understand our people better, it means that we can be better allies all the time and not just some of the time. Taking that on board is a great step in the right direction.’

I agreed with Luis and added that as well as understanding people better, inclusive leaders can work towards developing openness, honesty, transparency, and being vulnerable as well.

Mica added, ‘Even the title of the session, ‘Everything You Want To Know About Disability But Were Afraid To Ask’ takes down the immediate barrier.’

I was glad to hear Mica felt that way since that’s what we wanted because we wanted. We wanted to create a space where you could ask any question about disability and not be worried about it. As Jeremy has said, there’s a lot of fear about talking about disability. Of perhaps saying the wrong thing or putting your foot in it and causing offence. Luis and I want to facilitate and create an environment where it’s okay to ask any question that you like.

I asked Mica and Jeremy, ‘What is your one departing thought each? What would your recommendation be about disability inclusion in the workplace?’

Mica jumped in. ‘In a really biased, number one plan pathway, I think get on and book the Mildon training. I’m not on commission. I can guarantee it. I just think it’s a brilliant session and the feedback and the response that we got from everybody was too. The power of you as individuals like Toby, you’re brilliant, Luis, you are amazing. You’re both amazing people. So that is the power and people really need to just get on with that and sign up to everything that you have.’

Jeremy added, ‘Don’t be afraid. Don’t be fearful. Embrace change, but also embrace disability because amazing people are out there that have great thoughts that can impact your business and your workplace. Just because people declare a disability does not negate their creative contribution to the workplace.

It is all about fear. Fear of saying the wrong thing and fear of not doing the right thing. Fear of over-explaining what the policies of the company are. We are all human. And we all understand. Fear is good because it makes us do something. It kickstarts that adrenaline of change. And for that, I have to thank you, Toby.’

Mica concluded, ‘I think if people are listening and they’ve not made a start and are new to equality, diversity and inclusion, then a great place to start is with Toby to begin that journey. As Jeremy and I have described there’s so much that’s positive and there’s so much to do. Even if like us you have got the Disability Confident Leader Level 3 status, you don’t have to stop. You don’t have to think we’ve reached the top now. There’s always more we can do. So, begin that journey. Take the first step, whatever it is, make that step.’

If your organisation would like us to deliver our ‘Everything You Want To Know About Disability But Were Too Afraid To Ask’ talk, then just get in touch through our website, www.mildon.co.uk. You can also follow us on LinkedIn. We would be very happy to talk to you about that and any other equality, diversity and inclusion needs your organisation has.

“