“I’m proud of myself for even applying”
2 March 2023inclusioninvolvement
Shaping Our Lives recently worked on a project where Disabled people led the research and coproduced the resources. Their feedback, shared here anonymously, demonstrates the powerful benefits that inclusive involvement can have. As well as this project leading to excellent resources for Disabled people, these lay researchers in turn found emotional and psychological benefits for their own lives, reporting increased confidence, new skills, and greater understanding.
Here are their reflections, in their own words.
(We have chosen not to specify the project to avoid identification.)
I’ve struggled a great deal throughout my whole life with accepting myself as Disabled. When I was growing up, I was the only one in my school who was statemented in primary school, and I think also at secondary school – I was definitely the only one in my class receiving one-to-one help and support; being autistic wasn’t really spoken about as anything other than a tragedy or a burden, and I’d frequently hear negative comments about autism during classroom discussions.
Until I met my partner in my mid-twenties, I was still very wary of strongly identifying as Disabled. This was something I’d been actively working on for a while before joining this team but I think, apart from my partner’s influence, this has been the biggest factor in being able to accept this as a component of my identity.
I’ve also learned that being in an explicitly inclusive environment dramatically improves my ability to work well.
I’m proud of myself for even applying in the first place. If this opportunity had come up about six months before I wouldn’t have tried – I’d have not seen it as something I could do and I’d have felt embarrassed about even considering it. I’m proud of a lot of the work I’ve done on the project generally – this is the most engaged I think I’ve ever been on something I was being paid for! But applying was a huge step for me.
I am incredibly proud of myself for sticking with the project as long as I have as sustaining a job has been a major challenge for me in the past.
In terms of living with a disability, the project has reinforced my belief that I do not want my condition to become a key part of my identity. This perspective seems at odds from my peers, but may stem from the fact that I have been very much encouraged to see my difficulties as separate from myself. It is something I have, not something I am.
The commitment to our individual development in this study has been so refreshing and empowering, this study certainly upskilled me in a lot of ways. I’ve genuinely learned so much, strengthened existing skills and I have come to better understand myself as an individual.
Moreover, I’ve come to realise how much value our insight can bring. In the beginning when we were invited to (voluntarily) disclose our disabilities so we could be matched up with service users to interview, I simply said I had mental health conditions and nothing more. I think I was worried that if I disclosed that I had an anxiety disorder and c-PTSD, I wouldn’t be seen as someone who could interview others effectively. But listening to another researcher openly discuss their experiences of being sectioned, for example, and how this experience meant they could contextualise a certain interview where others couldn’t, empowered me to overcome that mentality. I even disclosed in a group meeting the other day about my having an anxiety disorder, which I had never admitted before in a work context that was beyond a private discussion with a line manager. So that was quite a big personal leap for me. Working in a team that so openly shares and values lived experience, for a study that also practically relies on it, has enabled me to become more transparent than ever.
Being part of a team of Disabled researchers allowed me to further learn and benefit from being part of the Disabled community by sharing and learning from the experiences of other Disabled researchers. They helped me feel like my experiences are not isolated.
I am a Disabled immigrant. As result of being an immigrant and being unsure about the level or support available to me when I initially became Disabled, I haven’t had much interactions with some services or institutions that many Disabled “natives” have commonly accessed or interacted with (i.e. Department of Work and Pensions, benefit system, social care services, etc).
I think this is a valuable experience and it would be interesting to lead more research into these particular intersectional experiences, at times, even for brief moments, I experienced imposter syndrome or feelings that I wasn’t “Disabled enough”, which I know can be common, especially among those with “invisible” impairments.
I like that this qualitative research study has been designed to capture multiple views and experiences.
In one particular email interview conversation, the participant wrote at length about how she was not getting all her support needs met and difficulties with constant reviews of her support and about her worries about her support and care. I know what it feels like to worry about support needs and review assessments, so I could align with her concerns. At the end of the interview I wrote that I hope she gets a good outcome for her assessment, as I felt this was more of a human approach – and I think she appreciated it.
It has been a privilege to watch the development of the team and individuals shine at different moments when their expertise was called upon.
On a personal level I have learnt so much about my disability and working as a Disabled person within a group of Disabled researchers on what can truly be achieved whilst managing various health conditions and the tricky subject of internalised ableism.
I am capable of more than I think, and I can push my limits beyond what I thought was possible.
I’m really proud to have played a part in a very diverse team of Disabled and non-disabled people from a variety of backgrounds all working together to achieve this much-needed research.
The personal and professional development of members of the team particularly those who were low in confidence at the start of the project their progression has been fantastic and a privilege to watch.
On a personal level I enjoyed interviewing both service users and social workers it was fascinating to get their experiences in their own words in a system which currently is under immense pressure at a time of increasing need. It helped me to reflect on my own journey as a disabled person and recognise the achievements I’ve made in difficult circumstances which I often overlook.
How we can help you
Shaping Our Lives can support you to co-produce and co-design research studies with service users, and we can work with you to facilitate projects or workshops around inclusion and involvement. Please get in touch on firstname.lastname@example.org to find out more.