Diversity Voices Interview: Roland Chesters of Luminate
1. Roland you are a very passionate and committed disability Rights advocate: what drives this passion and what is the change that you’d like to see?
My passion stems from having been in a very dark place due to my (then) newly diagnosed disability and the initial lack of support from my then employers. At a time when I was at my most vulnerable the people I trusted most to help me to normalise my new situation failed to understand, appreciate or respond to my changing needs and effectively told me initially that I was no longer of any use to them. It was a double whammy to be told that, on top of the life-changing diagnosis I had been given. It would have been very easy to give in and never resurface. But I didn’t. I found my voice. I fought back. Being eventually elected Chair of the Disabled Staff Network there gave me the opportunity for further interaction with the wider disabled community and to see how many other disabled people were in the same position but, for whatever reason, have not been able to find their voice. So I now work not only with people who are newly disabled but the organisations that employ them or serve them. Helping the disabled person to find their voice and helping organisations to listen and understand what they are being told. The biggest change I would like to see is more open communication between the disabled person and their employer.
2. With the work that you do with Luminate and other disability organisations, what are the key challenges that repeatedly come to the fore?
For many, disability can be a scary word. For the person newly disabled it may mean considerable change to their life. They may have to go through a grieving process to come to terms with how their future expectations may have had to change. For the employer it can conjure up (largely inaccurate) visions of potentially expensive reasonable adjustments. For both there can be hesitation in working out how to communicate and understand what the other’s needs are. The disabled person will have acquired a new vocabulary and a new body of knowledge surrounding their disability that their employer is unaware of. In my experience the biggest difficulty arises in SMEs where a much-valued member of staff may suddenly become disabled. The employer wants to do their best by their employee but simply have no knowledge or awareness of how to do that and fear that any changes that may have to be made to the workplace or the employee’s way of working may have a substantial impact on the organisation. That’s where Luminate comes in.
3. According to recently published police figures, Disability Hate crimes in England and Wales have increased by 1/3rd between 2017/18. What factors do you think have led to this increase? And what steps do you think could be taken to help manage this issue?
A hate crime is defined as ‘any criminal offence which is perceived, by the victim or any other person, to be motivated by hostility or prejudice towards someone based on a personal characteristic.
Disability hate crimes rose by 30% in the UK in 2016/17 (below Religious hate crimes which rose by 40% and Transgender hate crimes which rose by 32%). The total number of reported hate crimes by monitored strand (Race, Religion, Sexual Orientation, Disability, Transgender) rose by 17%. The monitored strand that continues to attract the highest number of hate crimes is Race (71,251 in 2017/18), followed by Sexual Orientation (11,638) then Religion (8336), Disability (7226) and Transgender (1651).
This places the rise in disability hate crime, along with religion and transgender hate crime well above the average and it is well worth considering why that might be so. The Crown Prosecution Service 2018 Hate Crimes Report stated that ‘the word ‘hostility’ in hate crime legislation does not fit with the reality of a large proportion of disability hate crime where individuals are targeted because of a perceived vulnerability’. So is it only a case of the perpetrators picking on what appears to be a particularly easy target?
Hate crimes often spike after a global or national event and this was certainly the case after the EU referendum. Also, the police are known to have improved the way they record hate crime, so some of the reported increases may be due to that change in process and not always because of an actual increase in incidents. But some believe that there are still many disability hate crimes that go unreported. Many people with learning disabilities, Down’s syndrome or autism may not recognise the abuse they have experienced as a hate crime or may lack the confidence to report these crimes.
Disability hate crime does not always have to include physical violence. Offensive graffiti, arson, verbal abuse, dumping of rubbish outside homes or through letterboxes and other forms of intimidation are included.
So often, the person with perceived disability is picked on because the perpetrator believes them to be incapable of retaliation, because of the disability. This does not need to be the case. It should not be the case. All hate crime has to be reported. It can be done on line through the Stop Hate Crime website.
Unless these despicable acts of cowardice are reported and appropriate action taken against the perpetrator(s) I can only, sadly, see disability hate crime numbers increasing. Even if you yourself are not the victim of a hate crime (disability or otherwise) but see it happening you too can report it.
4. In your opinion has the work that you’ve been doing as a disability advocate over the last few been helped or hindered by the growth of social media?
It is a double-edged sword. It has helped to raise the profile of many people with disabilities who are achieving amazing things – and I’m not talking paralympians here. For some, just being able to live their own life as they want to can be an amazing thing. On the other hand social media has also created the ‘keyboard warrior’. The individual that hides behind the anonymity of their keyboard to spout venom and hatred. The psychological impact of being on the receiving end of that kind of attack cannot be underestimated. At its best social media can be used to inform, educate, advise, share, ask and inspire. At its worst it can be used to spread falsehoods and myths, embed stigma and create division, isolation and exclusion.
5. Recently there has been a lot of interest in wellbeing and mental health: do you think that organisations should be placing more emphasis on creating wellbeing programs and policies? Or what benefits do you think there are in organisations placing more emphasis on creating wellbeing programs and policies?
I am working with a number of organisations that are introducing, or have introduced, such policies. Mental ill health in the workplace, in particular, is of huge importance to any organisation. The World Health Organisation has placed mental ill health at the top of its priority list. The latest Health and Safety Executive report reveals that work-related stress has become an ‘epidemic’, with 15.4 million working days lost to the condition in 2017/18, a huge increase on the previous year. HSE said 595,000 workers were reported as suffering from work-related stress, depression or anxiety over the last 12 months, with 239,000 of these representing new cases. The number of days lost to stress was up 24 per cent year on year. The Chancellor announced a £2bn boost in funding for Mental Health Services in the recent budget.
However, there is a difference between introducing a programme or policy and making sure that employees actually engage with it. Otherwise it becomes a meaningless tick box exercise. Employees can be over stretched, under-resourced, barely achieving with unmanageable targets and yet they feel that to reach out and say they are struggling will be seen as a sign of weakness. Presenteesim is a common – and increasing - danger. A culture of openly acknowledging that work can, at times, be tough, draining and demoralising will support individuals to speak up, speak out and access the help and support they need. Senior Board Champions who themselves are able to acknowledge the struggles they have gone through or are still going through is a hugely powerful message. But all too often, in my experience, the higher in the hierarchy the individual is, the more difficult it appears to be for them to speak openly about their own mental health experiences.
It’s great to put support mechanisms in place but, for example, I work in organisations that have an Employee Assistance Programme in place yet very few employees are aware of it. I deliver workshops to companies that have trained up volunteer wellbeing officers, but nobody knows they are there. Clients that have internal coaches and mentors in place but nobody access them. It is pointless investing in all of this support if people are not made aware that they are there, that they are confidential and they are non-judgemental.
6. Roland, your very inspiring book “Ripples From the Edge of Life” shares yours and other inspiring people’s stories of receiving life changing health diagnoses and the ensuing journey: based on these experiences what could/should organisations do to make the journey easier for their members?
Ripples contains the stories of 13 people, plus myself, diagnosed with HIV and some cases AIDS between 1985 and 2015. Through all of the stories the theme of stigma is writ large. Stigma is created by fear and fear is created by ignorance. Many invisible disabilities meet with the same response and reaction. I can remember when people did not talk openly about ‘the big C’. We are, at last, starting to open up conversations about mental ill health. But being diagnosed with any life-changing condition can be a long, lonely journey. Isolation and self-stigma leading to depression and other mental ill health conditions result. Under the Equality Act managers have a duty of care to engage with someone they manage who may be underperforming due to some kind of illness or disability. But how many managers are trained in how to initiate and continue that conversation. As I was becoming increasingly unwell, before my diagnosis, it was noted in my appraisals at work that I was ‘not my normal self’. But did anybody reach out to me? I thought I was going mad. Possibly others thought the same. But nobody sat down and had the conversation with me. If they had perhaps my journey might have been very different.