Sally Whitney is a Research Associate with the University of Sheffield, actively involved with Canine Partners and the Living Life to the Fullest project, and an advocate championing young people with disabilities. She shares her insights on the support she did (and didn’t) get on her path from education to employment.
My name is Sally Whitney and I have a variety of health related issues. I have been unwell since I was 17 years old and am diagnosed with Lupus and a host of other autoimmune diseases. In addition, I have a connective tissue disease called Ehlers-Danlos syndrome (EDS) that has caused other issues such as autonomic dysfunction and bowel dysmotility, to name just a few! I am a full time wheelchair user, have an assistance dog called Ethan and have 24/7 care from personal assistants.
What was life like growing up? Did people think you could have a career? Did you think your disability would stop you?
I did not become unwell until my last year at school so I had many plans to work. I wanted to study medicine and become a doctor specializing in obstetrics. From the age of 16, I had been preparing to go to medical school, taking the right A-levels, getting excellent grades and getting plenty of work experience in the healthcare field.
I have to say that getting support in finding a career as a non-disabled school student is completely different from being a disabled young person who has not been in education for a long time. There seemed to be so much support available as a non-disabled school leaver; from my school, different vocational organisations and universities, all helping me consider work. The path seemed very linear, logical and clear cut.
However, as a young, disabled person no longer in education I had no guidance when it came to considering job options and my journey into work had no set path whatsoever. It has taken a lot of different experiences and work on my self-belief to get to the stage I am at now.
What support did you have to find a career/job/volunteering opportunity?
For the first decade of my adult life I wasn’t striving to work as I was merely surviving and trying to stay alive day to day. I had not considered the fact that I may have some skills that could be utilised in some way. I think it was because the idea of being a doctor was so far out of my reach (and that was the only idea that I had had of work) that it did not occur to me that I would be able to do any work at all.
Certainly, with the limitations of my health conditions and my basic knowledge of the world of work, I couldn’t see any balance between the two or how I might be able to enter it.
This was not helped by the fact that there doesn’t seem to be anything in place to help a disabled, young person not in education to start considering the possibility of work or what skills they might have that may be applicable to doing a job.
What are you doing right now for work?
My slow journey into work has been through the process of volunteering, doing work with the charity Canine Partners, from whom I received my assistance dog. I am also doing unpaid work with the University of Sheffield as a co-researcher with lived experience of disability.
For the first time, I am now working as a paid Research Associate in collaboration with the University of Sheffield under the DWP’s ‘permitted work’ scheme. This has been a tough journey and is the first time I have come across the formal procedures in place and informal processes that have to be navigated to access work.
The challenges of navigating disability benefits
The difficulty of navigating the benefits system has been one of the hardest things. I was very put off by the ‘Permitted work’ aspect of ESA and lack of information about how that might affect my other benefits. I could find no official information about how the impact of putting in for Permitted work may affect the likelihood of/how soon I might be reassessed for ESA. I was worried about whether it would affect my PIP benefit.
I managed to work out from other disabled people in work, searches online etc. that theoretically it shouldn’t affect these benefits, but I had no reassurance from the professionals that I wouldn’t lose my benefits – even when speaking to DWP.
I tried phoning the Jobcentre and those in the benefits section of the DWP but they provided no guarantees, gave mixed messages and even told me that they thought the idea of being on Employment and Support Allowance but being able to do some work was paradoxical!
What has helped you the most to develop your skills and confidence to get to where you are now?
For me, there has been no formal help or training that has helped me develop my skills or confidence; it has been a gradual series of experiences that have led that to the feeling that I am finally in the position where I can positively contribute to the workforce.
Learning that my skills were valuable and valued
After presenting a speech about my life with my canine partner (assistance dog) Ethan at our partnership/graduation day at Canine Partners headquarters, it was suggested to me that I may have some talents that may be of use to them. They asked if I could perhaps do more talks on their behalf to educate the public as well as representing them and what they do in the media.
Even though they weren’t referring to work in the traditional sense of being paid and having a contract, simply the idea of actually doing something was a surprise in itself. At that point in time I had not recognised I had any talents that were useful for the working world.
Working on my self-belief through experience
It took some work on my self-belief to get to the point of realising that I was actually capable of talking to journalists, appearing in articles and on TV . It took even more self-belief to realise I was actually helpful to Canine Partners and they appreciated my work. I realised that I enjoyed promoting the charity and using my skills but I had no idea how I could make these limited skills I possessed work for me in the form of a job.
It was a while later – when I spotted an advert on social media asking for people to give their experiences of living with disability as a young person – that I became involved in the project Living Life to the Fullest. It was at this point that I realised that perhaps my lived experience could be of use in research.I feel like a door was opened for me to begin to start recognising that I may possess more skills and considering what I could bring to the field.
Working flexibly on my own terms
There are definitely things that have allowed me to get to the place I am now. For example, certain aspects of my life and needs had to be accommodated for.
I was only able to do volunteer work on my own terms; I couldn’t promise regular hours or a certain amount of commitment.
The organisations I volunteered for had to be able to accommodate my PAs and assistance dog, and also accept that I might have to cancel at the last minute due to ill health or care provision falling through.
Communicating with other people with disabilities
However, something that has been eye opening has been working on the Living Life to the Fullest project with the University of Sheffield, due to the nature of how we worked together and how I was valued. It was only through the suggestion of other individuals with disabilities and the university faculty that I realised I may be capable of paid work.
I had not actually considered the volunteering I was doing or the research for the project as work at all. But suddenly I saw other individuals, in situations not totally unlike my own, who were active in the world of work. More than that, some of them were flourishing!
Do things need to change to help more young people with disabilities move on into employment?
Absolutely. A number of things helped me back into the world of work but they don’t seem to be commonplace.
More flexible working
One of those things was the concept of flexible working which I had never seen practised to the level that it was practised on the Living Life to the Fullest project. I certainly had not come across the term and idea of ‘crip time’; the idea defined by theorist Alison Kafer (2013) as the recognition of (disabled) people’s need for ‘more time’ and that the world (in this case the working world) is set up for the benefit of and according to the time frames of non-disabled people.
Remote communication methods
The online methods used for carrying out the work as well as communicating with one another (for example, the use of Google docs for editing articles, Facebook Messenger for carrying out interviews and using Skype for meetings) allowed me to dip in and out of the work in my own time, at my own pace and crucially from my bed or sofa.
A movement away from a rigid framework of 9-5 working is certainly a change that is much needed.
Increased transparency and communication in workplace culture
Something else that I think is vital is providing workplace environments where everyone is open about their own needs. It was others working around me being open about their own restrictions and communicating their needs clearly that made it possible for me to open up about my own.
A change towards a culture of promoting people to consider possible adjustments they may need would certainly be helpful.
What would be your top tips for other young people living with disabilities in getting the right support and finding a career they will love?
It is hard to come up with a list of tips that will help other disabled people find work they love, as I followed no specific structure. I didn’t come across any linear method to enter work. However, there are certainly things that I found helpful.
Finding a workplace environment that has an understanding of disability; e.g. the need for PAs, difficulties with travelling, cancelling at the last minute and having periods of time when I’m less productive, goes a long way to being able to work successfully.
This may also include funds being made available to accommodate required adjustments e.g. travel costs for wheelchair accessible transport and hotel accommodation for PAs.
Being in a workplace where other associates have disabilities and are flourishing has really encouraged me.
Finding a mentor that has an understanding of disability can also be a big help.
Something else that I have found helpful is undertaking project work. It fits the limitations of my condition well, as it allows me to dip in and out of work and do more or less activity dependent on my health status (but this will be more or less relevant according to disability).
The most important factor for me in believing that I could be in the world of work and then entering it, was being in a work environment that encouraged me to believe my lived experience is valuable. I know now that there are things that I have lived through that are of benefit in a work environment. Knowing how to multi-task (something that a chronically ill person with multiple health obligations has to master pretty quickly), being organised and thinking outside the box are just a few.
My main tip to young people with disabilities would be: Stay positive, believe you have relevant and unique skills to add, and remember that you are a valued member of society and can be an asset to any workplace.