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Disability Narratives

Caroline Moughton, the University Staff Disability Advisor talks about the project and its aims (recorded at the 2017 Oxford University Disability Lecture)

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The Disability Narratives website is the outcome of a research project to identify and share good practice on supporting members of staff with a disability or long-term health condition. It draws on the methodology developed for the Women in Science project which interviewed women scientists at Oxford about their careers. There's been a lot of interest in the project and I'd like to thank all those who have contributed, through membership of the original focus group, through the steering group, by providing IT and administrative support and especially our researcher, John MacArtney, and Sarah Ryan, the research director in the Department for Primary Healthcare Sciences. We had an overwhelming response to our call for volunteers so thank you to everyone who offered, even if you weren't selected to take part. Most importantly of all I want to thank the research participants for speaking so honestly and openly about their experiences.

John interviewed members of staff employed by the University and colleges he then carried out thematic analysis on the research transcripts and wrote topic summaries on the key topics which will be made available on the website, illustrated with clips and texts from the recorded interviews. I'm going to give you some highlights here but I encourage you all to explore the website for yourselves.

we need to recognize and use the skills of our colleagues who work and think differently. We need to think creatively about what support might help them to work productively

Who's it for? Firstly it's for disabled staff to enable them to share the hard-won knowledge and experience of others. Secondly, it's [for] our managers and colleagues, to help them understand the lived experiences of their colleagues and how to support them. Thirdly, we hope that the material from the site can be used in training to support the whole University in becoming more disability aware.

We've got a problem at the start with language. Many people who might be considered to fall within the definition of disability don't use that terminology about themselves; it may not occur to people who have mental ill-health or dyslexia or cancer that they are disabled. Some may feel that, because they're able to cope, they're not really as disabled as people who are more incapacitated. I've had several conversations with members of staff who've recovered from periods of being very unwell about whether they are still disabled. Our Disability Narratives website shows very clearly that it is possible to be working successfully at the University and to be disabled.

One surprise was that, even though the university can offer good support, many research participants reported difficulties in discovering the processes for getting help. Even when people were aware of guidance, there were differences in how guidance was implemented. We realized we need to improve our information for individuals and for managers, which may be something new for both of them. Even for very confident academic or professional staff, the process of seeking support for a disability or long term health condition is difficult: people feel vulnerable and experience a lot of anxiety, they may wonder whether they'll be able to continue working at all, they're worried about the future.

The website will show that there were some really excellent examples of good support and practice, as well as several occasions when people didn't get the help or support from their managers or departments that we would hope for. So there is definitely scope for the organization to improve its practices.

Line managers have a key role to play in supporting staff with a disability in terms of signposting two sources of advice, implementing recommendations and taking a joint problem solving approach to any difficulties. The attitude, approach and communication by managers and department were vital to ensuring that there was constructive support put in place. There are examples of how to provide good support on the website. Several of the research participants are themselves managers, whose experiences made them more aware of the different needs of those they were managing.

Beyond line managers, many different people contributed to support of a disabled individual including Human Resources staff, the Occupational Health Service, me, in my role as, the Staff Disability Advisor, Trade Unions and sometimes external organizations. Some people also had extensive involvement with medical professionals, for diagnostic assessments and subsequent medical interventions. Outside work support from family and friends can be very important.

It's perhaps obvious to those familiar with long term conditions and disabilities that conditions can vary or flare up at any time, often without forewarning, and against the 'will' of the person. What was noticeable was how many participants found their experiences were understood by others in a more linear narrative of illness consisting of get ill - treatment - recuperation - restoration. One thing the website does is to highlight the limitation of that linear narrative (and the 'will yourself to health' narrative that often goes with it). Our disabled colleagues are experts in living with poor sleep, constant pain, side effects of medication, brain 'fog'. They're often doing everything they can to reduce the likelihood of a flare-up of a condition and to carry on working despite physical and mental constraints.

One thing that was common to all our research participants was difference.

These are the people who experience physical discomfort from the standard chair and workstation which may not meet suit their physical needs. They are the people who may not use a standard computer and keyboard and mouse, but who need alternative equipment or voice recognition software to enable them to use the computer in a different way. Most people are expected to show consistent performance, but some of our disabled colleagues including those with some mental health conditions have periods of great creativity and periods when they struggle with basic tasks. People with neurodiverse profiles - and that includes people with dyslexia and people on the autistic spectrum - show great strengths in some areas and unexpected weaknesses in others. People with dyslexia, for example, are often a good at big-picture thinking and at making connections between different areas, at problem-solving, but may be weaker in writing it all down. People on the autistic spectrum may be good at systems thinking or pattern recognition, but may have difficulty with social relationships.

We need the talents of all our staff to tackle the world's complex problems and we need to recognize and use the skills of our colleagues who work and think differently. We need to think creatively about what support might help them to work productively. There are no standard solutions: every individual and situation is different. Even when people appear to have the same condition, their experiences may be different. Often the support arrangements are reached by process of experimentation to find out what is effective: perhaps a combination of technology, some flexibility to allow an individual to manage their own workload to accommodate good and bad days, perhaps some changes to working patterns and greater understanding from colleagues.

If there was one message it was don't be afraid to ask for help and support - that goes for people with long term conditions and disabilities and for their managers. When there are complex problems we may need to work together to find solutions.

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