This is repost from a blog I wrote for AbleOTUK its the third blog posted by us during Disability Pride Month – please also see others here https://affinot.co.uk/category/ableotuk/
Acknowledgement – This is a personal experiences piece of writing, throughout this blog I will use the term disabled/disability by this I mean any condition that has a physical, emotional, psychological or learning impact on how a person might engage in occupations, I acknowledge that not all people with health conditions and mental health will identify with the word ‘disabled,’ but this is my preferred term for my conditions and I fully respect others who choose to use different terminology.
I’m proud of who I am and what my lived experiences of lifelong disabilities have brought to my life, and to my delivery of occupational therapy.
The subject of this blog is to address what those of us with lived experiences might bring to the profession, both as registered occupational therapists, and those who have been in receipt of occupational therapy.
Firstly what do we mean by lived experience(s), it’s a term that has been around for a while, some might think it’s the latest buzzword, in fact it’s fast becoming a sought after set of skills that are being actively employed within services designed to provide health and social care. In job roles like Recovery Workers, Community Engagement Coordinators, Volunteers, Peer Support workers, where it is being seen that those that have experiences of disabilities have a key role to play.
I have experience of working alongside many of these roles and they add much value, and are needed but I can’t help feeling uncomfortable that we have unintentionally created a distinction between those with lived experience and those with professionally recognised qualifications, like occupational therapists. Does this add to the undercurrent of ableism that is experienced by those with lived experiences from health and social care professions? I’m not sure it does but perhaps there is a potential for an us and them culture to develop?
Lived experiences of disability could include:
- Knowledge gained through direct, first-hand involvement in everyday events, rather than through assumptions and constructs from other people, research, or media.
- First-hand experience of living with a disability, including real life encounters and challenges faced by individuals with disabilities
- Personal perspectives on the impact of disability on daily life including insights into the physical, emotional, and social aspects of disability,
- Understanding gained from navigating a world not designed with disability in mind
- Unique knowledge and expertise developed through personal experiences with disability
- The intersection of disability and identity, including self-perception and societal perceptions
- Examples of overcoming difficulties and achieving personal goals in spite of disability
- Contributions to disability advocacy, awareness, and inclusivity efforts
- The potential for growth, resilience, and empowerment fostered through the experience of disability.
There is an argument that these are ideal skills for occupational therapists, but how commonly does the profession co-create its models, assessment tools and frames of references on an equal footing with those who have lived experiences, rather than just using them in parts of the development like research subjects, or asking for feedback.
When we define occupational therapy we think of it as client centred, but can we truly say it is client centred if we are not embracing the lived experiences voice in the profession moving forward? Surely in the history of occupational therapy we must have had some, with lived experiences that shaped the profession?
One of the reasons AbleOTUK was founded was because those within the profession with lived experiences had experienced, discrimination for others in the profession, being questioned about if they have the ability to practise, this is a common experience of those that attend our monthly support groups. There is a stigma attached to disclosure, and reports that people with lived experiences are referred to occupational health or taken down capability, more often than those who do not have lived experiences.
Anecdotally those that attend our support groups report difficulties with their colleagues and organisations making reasonable adjustments. I have personal experiences of reasonable adjustments being agreed, but not put in place, being questioned that my reasonable adjustments are not fair on others, and experiences of reasonable adjustments I have asked for at an interview not being given as it is considered unfair to others.
What we know is that equity of opportunities within employment means that all employees have equal access to opportunities for employment, advancement, and development regardless of gender, race, disability or other factors, but this is not the experience of those within the profession.
Representation matters, and like most other health and social care professions they have a history of being developed by those that had the privilege to access the education needed to succeed, social economics have given some under represented groups access to education and the profession is more diverse than ever, with the core values of occupational therapy being universally understood, but how it is practised is often depended on many factors including how health and social care services are delivered around the world.
For example occupational therapy is well established within mental health settings in the UK, but in other developed countries it has little representation. There are many models of occupational therapy that have been developed around the world. A country’s cultural makeup will have played a role in how these models were developed, with many comparing a person’s occupational performance abilities to standards that society finds acceptable or normal.
A lot of the time, I work with people that have not had opportunities or privileges to develop skills in occupations that society sees as normal, and they get trapped in a constant circle of assessments, criteria, and judgments made by people in positions of power. Is this client centred?
Our standardised assessment have nero-typical expectations, an acknowledgement of this needs to be taken on by the profession, with a willingness to listen to the lived experiences voice, being prepared to hear where and when our assessments and interventions have not felt helpful, and learn to recognise the expertise that can be brought to the table by those with lived experience, not as a thing to inspire us but as ways to actively co create interventions, modules and approaches in the future.
This Disability Pride Month #BeAnAbleOTUKAlly and take some time to consider where the lived experience voice is in your clinical practice, and if you can’t hear it, be curious to find it.