#PartOfMePodcast – Episode 9: Roland on Acquired Disability

Esi:

Hi everyone. Thank you very much for tuning in. Hi everyone. Thank you very much for tuning in. Once again, we are just going to get on with talking to our next interviewer, so interviewee, so he’s going to start by introducing himself. So hello, 

Roland:

Hello Esi, Thank you for inviting me to participate in this conversation.

Esi:

Not at all. Thank you very much for agreeing to be an interviewee and to be part of the conversation.

Roland:

So I’m Roman Chesters, and I run my own company, which is called illuminate, and I’m a disability development consultant.

Esi:

Oh, brilliant, excellent. So can you explain to us a bit more about what Luminate does?

Roland:

I work with three target areas. So I work with adults who become disabled later in life and want to normalise that situation, whatever that means to them. To many of them, it’s about remaining in employment or going back into environment, and so I coach them. For lots of people, it’s about regaining confidence, acquiring up to date skills and so on and so forth. My second target area is working with organisations that want to become more disability aware, disability friendly, disability confident. Okay, provide training and consultancy exam. And my third target area are organisations that support people with disabilities, so places like scope, Mencap and so on and so forth. And I deliver training for them as well.

Esi:

Brilliant. So, I mean, we’ve, I mean, it sounds like you’re really busy. Actually, we’ve talked to quite a lot of other people regarding disability consultancy, as in, supporting businesses to be disability confident. So do you mind if we talk a bit more about your work with supporting people who have acquired a disability? So can you you kind of just explain a little bit about what that means and what acquiring a disability means for people who may not have heard the term before.

Roland:

It’s an awful term for me, acquiring means purchasing. So if I went online saw the disability, thought, yes, it’s like colour, right size. Next stage is a very narrow return on refunds. We’ll refunds. There you are. You’re suddenly disabled. Yeah, it’s a process that many people, as I say, in later life who become disabled have to go through, and it’s partly a grieving process for the life that they have and the expectation that they will not be able to have that life again, obviously, depending on the nature of the disability that they now have, yeah, it’s also about regaining self confidence. Becoming disabled can have a massive impact on one’s self confidence, particularly again in terms of employment, if your employer turns around and says to you, actually, we don’t think you can do the job that you were doing anymore. Yeah. Massively. So it’s gaining going through the green process, regaining self confidence, and, if necessary, exploring what skills and attributes the person that has that they can further develop to make themselves attractive to the workplace. Yeah, and as you and I know Esi, for many disabled people, we have an acquired degree of resilience because of the barriers and hurdles that we have had to face, which we do don’t have a disability do not understand, and it’s making national employers aware of the fact that we do have that degree of resilience and that as a rule, people with disabilities are a lot more faithful to employers. Yeah, they stay longer in with a particular employer than people just without disabilities. Do that kind of stuff about boosting the person with disabilities confidence, in saying that they are still attractive to employers, that a person with a disability can still have ambitions and achievements, I say, when people ask what I do, I say, I’m the person who helps the person in the wheelchair climb their highest mountain.

Esi:

Oh, that’s a really nice way of putting it

Roland:

Metaphorically speaking, because if you saw me physically, I am not a mountain climber. Everybody, everybody, whether you have a disability or not. Everybody has their mountain to climb. Absolutely with disabilities, it might be climate learning how to climate in a slightly different way.

Esi:

No, I completely agree. And this, this, I mean, there’s so much around in the HR world at the moment about strength based interviewing and strength based employing, and it’s so important. As you said, to see the strengths in some people. And I think, you know another, another area that you were talking about, that I just want to touch upon really quickly as well is, you know, people because of people’s perceptions of disabilities and people’s perceptions of the stereotype when they themselves become disabled. You know, it must be quite hard for them to see past that perception and see themselves as quite a worthy, worthwhile person. 

Roland:

Absolutely, totally. 

Esi:

Okay, brilliant. That sounds really good. Thank you very much. Roland, so can we talk about you specifically for a while? So are you able to tell us about do you prefer the term impairment, disability? How do you like to phrase it,

Roland:

Although I don’t like the word disability because of its connotations, it is an accepted term, and it’s the one that I prefer to use.

Esi:

Okay, okay, brilliant. Are you able to tell us about your disability and how it affects you in the workplace?

Roland:

So coming up for 12 years from the first of September, 2006 after two years of becoming increasingly unwell, losing the use of my arms, legs, ability to speak and so on, I was eventually diagnosed as having HIV, AIDS and my esto. Found illnesses progressive multi focal leukemcephalopathy, which is a brain disease which, in my case, had affected the cells at the base of the brain which cover the measuring skills. Hence my paralysis. Yeah, I was working as a civil servant in Westminster at the time, but was off work on sick leave for five months. Sexual Health records kept separate and confidential to other health records, so my employers were only told about the encephalopathy and not the rest of it. And so I had to. I didn’t have to, but I chose to tell my new line manager on my return to work that it wasn’t only the encephalopathy, but it was everything else as well, and that’s when it kind of started to spiral out of control.

Esi:

Okay. Well, can you elaborate a bit on that? How did it spiral out of control?

Roland:

My line manager, who was a friend and advised me with my best interests at heart, I know, to not tell anybody else about the HIV and AIDS. So I managed a small team of people, and I complied with what she suggested, because the time was all new, and I was unwell and so on so forth. The people that I managed could clearly see the times recovering from the encephalopathy I was regaining use of limbs, and so on and so forth, but they didn’t know about the rest of it and the psychosocial impact of being told that one has two weeks to live, which is what I was told at the time of my diagnosis, wow, and the RE evaluation of priorities and so on and so forth. So when my team would come to me with their daily issues about whose turn it was to make the tea and so on and so forth. All I felt like doing was slapping them around the head and telling them that life is too short, which is not good management practice, very frustrating for them and very frustrating for me. And eventually, I told my line manager, they need to know. Yeah, she was quite reluctant for that to happen, because I think she was concerned that they would turn around and say, You should have told us. So we could have taken precautionary measures, but we went ahead with it. We had a meeting. My line manager brought in some heavies from HR just to make sure nobody got beaten up. Absolutely fine. These are intelligent adults. There were no recriminations. There was some hugs and tears, but that was all fine, but it still continued to be a difficulty for me to manage people. So I said to the foreign office, I this moment in time, I have to focus more on managing my health, my life, unless I’m managing people. And the Foreign Office said, No, at your grade, you have to manage people. You can’t manage people. Then we fill that form for you to just sign the bottom for you to take early retirement on medical grounds. 

Esi:

Oh my gosh. 

Roland:

So effectively they were saying that at that age, and because of my circumstances, I was no longer then used to society. Yeah, yeah. And that’s when I turned around and decided that I wasn’t going to have this anymore. I’d lived in too many shadows for too long as a gay man to want to live the rest of my life in the shadows of HIV and AIDS. So I came out, I suppose you could say I organised a lunchtime briefing session in the Foreign Office. Invited chance Higgins Trust, primary charity in the UK that looks after people living with HIV and AIDS, okay to come in and give lunchtime. Briefing, I put posters up around the office saying that I was organising, organising this event because I was a colleague living with the condition is my contact number. Posters were slashed. Posters were defaced repeated. Some were torn off the walls and walked on my line. Manager removed some before I could see them, because she said they were too distressing, yeah, and so I joined union and started coming with me to the discussions I was having with HR about my future, and it took two years for foreign office to agree, eventually, to me dropping down a grade to a level where there were no management responsibilities, whether they will continue to pay me the higher level salary. So that, in effect, became my reasonable adjustment. Yeah, and I was tremendously grateful for that and very happy to continue working with the foreign office, I became chair of disabled staff network, and was able to secure changes to policy that meant that more colleagues living with disabilities were felt more confident about being open about their disability and what they needed to have put in place to enable them to achieve what they wanted to achieve. Yeah, I stayed with the Foreign Office, but another eight to nine years, and we ended on very good notes. I think it’s been a learning of a steep learning curve for both of us. Yeah,

Esi:

No, it sounds like it, excuse me, there’s so much in there to unpack, but for the, you know, for because we don’t have an awful lot of time, there’s just a couple of things that I want to talk about, that you were talking about, that I want to bring out from them. So just the, I mean, to begin with, just the your the people that you work with, the people that you manage, they seem to be very much, you know, well, you’re still Roland, and it doesn’t change anything for us. But the assumptions was that they were going to not reflect like that at all. 

Roland:

Yes indeed. 

Esi:

And I think those assumptions, you know, for me, those assumptions, go a lot further to to create barriers and things and actually the thing itself, and I don’t know, but sorry,

Roland:

Was sort of beneficial bias that my line manager did what she did because she thought that she was defending me, that she was supporting me, and as I said, to do with all the right intentions, but not with the outcome that she expected or anticipated?

Esi:

Yeah, absolutely. And so also, when you were talking about putting on that seminar, I can’t remember what what you called the seminar. When I was employed by an organisation, we called them lunchtime seminars. I think it’s a very similar thing. But when you put on a brief a briefing seminar. So when you put on that briefing seminar, obviously, after all of the prejudice that came with it, how many was there? Quite a good turnout. In the end,

Roland:

Probably actually there was quite a large turnout. And I was astonished that so many people were interested. This is in like the fact that the foreign office, at that time, I don’t know why they still do, had a trip apartheid policy with DFID and the British Council support people living overseas with HIV and the degree of hypocrisy in that they were doing that for people living overseas, but actually couldn’t support one of their own emphasis. Now,

Esi:

Absolutely, no, absolutely. I mean that. I mean, yeah. I mean, that’s another thing that, you know, if we had more time, we can spend hours unpacking, but just the pure level of, you know, prejudice and lack of empathy from from the people that you worked with is quite astonishing, 

Roland:

But not uncommon, 

Esi:

Yes, yeah, absolutely not uncommon. 

Roland:

And this condition is is alongside past mental health, is one of the most stigmatised disabilities that we still have, yeah,

Esi:

What do you think the barriers are that you face due to your condition?

Roland:

Things? Well, the stigma is not halfway, which means and the stigma is it’s a circular stigma. People living on the whole choose to not be open about it, because they are concerned about the impact of declaring their status to other people, and so because a majority of people may not know somebody who’s openly living with a condition, the mythology still. Continues to surround the condition, and Ignorance breeds fear, and fear breeds stigma. So that’s one of the biggest issues, certainly that has an impact on mental health. So people, the HIV community in UK has a 30% higher suicide rate than the rest of the population because of the impact that stigma has on mental health. Yeah. And then there’s, as with many other conditions, the side effects from medication, which can be quite nasty. And there’s also things like fatigue and anything that goes along with a chronic medical condition, fluctuating chronic medical conditions. So there are days when I feel certainly on top of the world, and then other days when not so much for an employer, it’s difficult, because there are days when I would be obviously more productive than other days, and I can’t tell, but I can’t forecast which day will be productive and which one will be less productive. Yeah, absolutely, from an employee’s perspective, that’s difficult. But at the same time I brought, I eventually ended up working as diversity equality officer in the Foreign Office, and so I brought that role of perspective that probably nobody who has not gone through that experience and is not living with a disability be able to bring to it,

Esi:

Yeah, well, absolutely. It goes back to what you were saying right at the beginning about the resilience that disabled people have and the ability to problem solve and to, you know, not to be able to foresee, but to forecast what happens in certain situations.

Roland:

 Yeah, yeah. Plans in place. 

Esi:

Absolutely, absolutely. So just moving on to any to the advice section of the interview. So if you were to offer advice to let’s, let’s actually offer advice to employers employing somebody with a health related condition, what do you think it might be? 

Roland:

I think the most Important thing is communication. Yeah, keeping channels of communication open, making sure that your employees are working in a culture which encourages them, supports them to feel confident in coming forward to talk about any disability issues, not shutting down those channels of communication when things get difficult.

Esi:

Yeah, yeah, absolutely. So what about advice you would give to a disabled person in the workplace?

Roland:

I again, I think it’s about being confident, knowing your rights, obviously start with your legal rights, but not relying solely on those identifying who are your friends, your supporters, the people that care about you in the workplace, putting in place those backup plans for those days when you aren’t able to function as well as you would like to, and discussing all of this with your line manager, okay, making sure that people in the line of management are fully aware. Yeah,

Esi:

Okay. I mean, I guess, for me, I mean, I guess on this podcast and on this interview, you come across really confident. And I can imagine there’s days where you don’t feel very confident at all, as with me, I think I come across a lot more confident than sometimes I am. But obviously not all disabled people are going to have the confidence to be able to go out and find that help themselves and to talk about those things. So what extra pieces of advice would you give to people who perhaps don’t have that confidence to begin with or can’t put that across? 

Roland:

I think reaching out to your peer community, okay, obviously, I speak from the experience of living with HIV, there are resources out there to help people news diagnose or people who’ve been even living with it for a longer period of time to, for example, peer mentoring. Branch of peer mentor. There are support groups, there’s information networks and so on and so forth. So realising that you are not alone facing the issues. Obviously, your issues are yours, but there is a similarity, a commonality with other people living with the same condition, so making sure that you are fully informed, fully aware, fully supported by People in your community.

Esi:

I think that’s really making

Roland:

Sorry, making full use of all the resources that are available.

Esi:

Yeah, no, I think that’s really good advice. And I think that that’s really, really helpful for people. And I think for certain people who perhaps don’t have can’t, don’t have the community with people with the same disability as them, or the same impairment or the same health condition as them. Reaching out to people of similar situations is also very helpful. So it doesn’t necessarily always have to be of the same impairment or the same health condition. It’s just about having somebody that goes through similar experiences than you to kind of problem solve and kind of bounce ideas off, I suppose, yeah, yeah, brilliant. Thank you.

Roland:

One of the one of the biggest things that I found gave me back, my confidence and so on, was actually volunteering in the sector.

Esi:

Okay, 

Roland:

And realising that however difficult your life. Maybe at the moment, there are always people out there whose lives are even more difficult.

Esi:

Yeah, yeah, absolutely helps to put things a little bit in perspective, doesn’t it? Yeah, brilliant. Thank you. Okay, we’re going to change a bit of the note of the question again, and we’re going to talk for a minute about you as a consumer so rolling Chester as a consumer of buying a service or product from a business. So what would you say? Would you be your biggest challenge or your biggest barrier in that area?

Roland:

Well, for me, as a result of the encephalopathy, I now dyspraxia, okay, and for me, dyspraxia affects me essentially two different ways. One is balance. So I have a tendency to bump into things and fall over and all that kind of stuff, but also in information overload. And so if I go into saying a department store, and there are lots of different signs or lots of different information, and it’s too much. I can’t absorb it, or I can’t take it in. It’s overwhelming. I will leave, yeah, equally, where the signage is unclear or insufficient or hidden, as often happens. Then again, I get frustrated and I will leave. So they’ve lost a potential customer

Esi:

Absolutely. And you, as we all know, the purple pound is so much money, and it’s you know, if you lose a potential customer for that sale, you’re losing them for the rest of their life as well. So what would you what would be your solution to that issue? For a business,

Roland:

I think if business reaches out to their local community of disabled people and asks them what they can do to make sure that what they are offering, whether it’s goods or services, are fully I hate the word accessible, but that people with disabilities can fully benefit from whatever it is that they are offering.

Esi:

Yeah, absolutely. I suppose you know, if you hate the word accessible, maybe fully inclusive, and people can be fully welcomed in the business as well. I completely agree, great. 

Roland:

And as we said earlier, just not making assumptions

Esi:

Yeah, I think that’s so sorry 

Roland:

Every person’s every disabled person’s experience of their disability is different to every other disabled person’s experience, even if it’s the same disability. So don’t make an assumption that just because you have managed to make your goods or services inclusive for one disabled person, every other disabled person will also be able to access that goods or services. Obviously you can’t change it for every person with a disability, but just being aware that disabilities affect people in different ways. 

Esi:

Yeah, that’s great. Thank you very much. Thank you so much. So we’re nearly at the end of the interview today. Is there anything else you would like people to know?

Roland:

I am an author, my one and only book, which is called ripples from the edge of life. It was published in May of this year, and whilst it is the story of my diagnosis, it also includes the stories of 13 other people living with a condition who were diagnosed between 1982 so right at the beginning of the ACE crisis, up until 2015 Wow. One of the interesting things looking at all of those stories is the scene that runs to all of them. As I said before, stigma and the impact that that has on mainland deep, physical well being. 

Esi:

And where can people get hold of this book?

Roland:

It’s available on Amazon, or people can purchase a copy from my website, which is luminate.uk.com

Esi:

Excellent. So what we’re going to do is we’re going, when I publish this blog, I will add links to the Amazon page and also your website so people can find out more about the work that you do. Thank you very much. Well, thank you very much for your time today. Roland, I really enjoyed talking to you, and it’s been really, really interesting hearing your I don’t Well, I suppose it is a story. I tried to stick away from the word story, but hearing about your experiences and the advice you’d give to people. So thank you so much for your time.

Roland:

It’s been a pleasure. Thank you. Esi,

Esi:

Okay, bye