Acknowledgement this blog is a personal opinion piece based on my own experiences of a life living with a Disability, from birth. My personal thoughts about the profession I work in and the almost 2 year journey I have been through in recovering from COVID-19 and the devastating affects it has had on both my body and my thinking. This is no way to criticism of any individuals who have helped me along the way it is an overall observation of the system. I recognise that the themes and experiences talked about here do not necessary represent the thoughts and experiences of others.
Thursday 2nd February 2022, around 10.15am, I was still in bed, working on my laptop, uploading some clothes I was selling on eBay. My mum had not long arrived to help me get to Hydro, she was in the living room when the phone rang.
I answered my phone, to hear a polite female voice, she began explaining the reasons for the call, a survey about television and radio – what access I had and how important it is to me. I’m finding that I am craving conversation, maybe because I rely on others to help me leave the house, so any social interaction, feels exciting. Something I need to reflect a-little more on I think.
So of course I said yes I’ll answer your questions, they were fairly straight forward with an emphasis on how reliant I was and how meaningful television and radio is to me and how I accessed it. Of course I referred to watching television as a meaningful occupation. (Eyes roll she’s such a geek)
As the survey came to an end there was a few questions about my education level, area of work and so on. When I said I was an occupational therapist, the lady enthusiastically said ‘oh I love occupational therapists’. I used to work within rehabilitation and worked with lots of OT’s they are amazing.
We chatted some more and I disclosed my journey of recovery and that I’m beginning to think about going back to work as a wheelchair user. We finished the last few questions and as we were ending the conversation she said, I don’t normally do this but I wonder if you have heard of my husband?
She told me is name, it was not a name I was familiar with, she explained he was a wheelchair-user after an accident, but went on to become a Professor and was responsible for developing ‘The social model of disability’. ‘Oh well of course I know the social model’ I said. We chatted a little more and ended the conversations with pleasantry’s.
My mind was blown. A quick google later and yes it was confirmed Mike Oliver, who passed away in 2019 was married twice. First in 1972 to Judith Hunt, (desperately trying to remember did she say Judith yes I think it was Judith) This guardian obituary gives you an over view of Mikes life and his impact on the disability movement. https://www.theguardian.com/society/2019/mar/19/mike-oliver-obituary
I began to wonder why don’t I know his name, the model I know well, but not the history behind it. This started a few hours of going down the internet rabbit hole, clicking on links I found, reading and learning more. Better than my usual internet rabbit holes, which normally consist of looking at videos of cats or ear-wax being removed.
Mike was an activist and one we really should know about. He was very critical of the Disability discrimination act, and of many disability charities, as this article on the UK Disability History Month website explains .
He referred to the phrase “parasite people”, once used by the disabled activist Paul Hunt to describe those “who furthered their own careers on the backs of the struggles of disabled people to lead ordinary lives”.
This struck me, in regards to lots of things I have been contemplating recently.
My interaction with health and care professionals, and they’re hopes, aspirations and expectations of my recovery.
All the thoughts about returning to work as a wheelchair user, and what that might look like.
My reflection on the difference life before covid 19, and the limitations to an extent my hidden disabilities had on my quality of life, compared to having a very visual disability now with a compelling story of covid 19 and a long hospital admission that grabs peoples attention and in turn often their sympathy.
Thinking about the things I hid before, the things I felt before, and a desperate feeling of wanting to be free, now and then but for very different reasons.
My dismay and disappointment in criteria, diagnostic lead services and systems that does not see me as a whole person but as individual health issues/conditions that needed to be fixed. That are often assessed, reviewed, treated separately.
Still this idea that I need to be cured. Rather that being asked what I want and what I’m comfortable with, with some questions about what was I like before, but not feeling like anyone actually listened. No-one taking the time to have an overview.
Thoughts about being approached to talk about my experiences at events. Its really nice and has help give me a focus. I want people to hear this story in the hope they will learn something. Yet when I think about going back to a profession I have invested most of my life to, I keep on being reminded of all those barriers that impacted on the delivery of an occupation focused occupational therapy service, that I wanted to, finding instead I had to please others, and ensure we were seen to be doing thing with people, rather than delivering the interventions they needed.
Barriers very well documented, including the miss understanding of what it is we do, a profession that claims to be patient focused, but continues to work within systems that are not, and the professions compliance with this.
My reading about wheelchair provision legislation is a good example. As a profession we should be looking at what are the occupations our clients, wants, needs and are required to do? but the criteria within this legislation does not take that in to account, instead it focuses on what your needs are within the environment of your own home, and this alone. Because of my existing disabilities and to save my energy I needed an electric chair. to really have freedom outside of the house, Thankfully I’m in a privilege position to have family members who could both advise and afford to purchase one privately.
As occupational therapists, and because of the social model of disability we know it’s the environment we are in, that as the biggest impact on individuals managing their own needs and wants. It impacts on how we feel, and the choices we make. Your home environment is a space you spend a lot of time in. You become skilled at managing that environment and change it to meet your needs. But it’s when you’re outside of that environment, when things are out of your control that we become dis able to do the things we want, need and are required to do. I am including not just the physical environments here, the sensory environments we are in equally impacts, but the solution to manage this is often to create separate spaces.
How do we firstly honour Mike and his work?
There are those that argue the social model is an outdated ideology, this paper concludes
‘the British social model has been an excellent basis for a political movement, but is now an inadequate grounding for a social theory. This social model was a modernist project, built on Marxist foundations. The world, and social theory, has passed it by, and we need to learn from other social movements, and from new theoretical perspectives, particularly those of post-structuralism and post- modernism. We believe that the claim that everyone is impaired, not just ‘disabled people’, is a far-reaching and important insight into human experience, with major implications for medical and social intervention in the twenty-first century.’
The social model of disability: an outdated ideology? The Journal ‘Research in Social Science and Disability’ Volume 2, pp. 9-28 (2002). Authors Tom Shakespeare, Department of Sociology, University of Newcastle.Nicholas Watson, Department of Nursing Studies, University of Edinburgh.
https://www.um.es/discatif/PROYECTO_DISCATIF/Textos_discapacidad/00_Shakespeare2.pdf Accessed 6th February 2022.
For me the social model has done so much and it was very right for its time, and still holds clear ideas and theory I truly believe in. Public spaces now by law need to comply to legislation around access, which would not be the case without it, however I do acknowledge that there is still some way to go.
The Idea that perhaps we all have strengths and barriers, made up by a number of factors. By understanding and acknowledging our own and those around us and by promoting understanding and tolerance (if that’s the right word) of each others. May lead to a better experience for us all . This has been explored within leadership programs I have engaged in. Acknowledging psychological therapies about personality traits . Further thinking about the environment, technologies and terms we use, that may have an impact on our thoughts, and experiences.
It’s attitudes that are the next challenge. Attitudes within society as a whole, but also within health and social care professions and settings. Having to do something to accommodate someone else, sounds simple but in reality it is challenging for everyone.
Take simply being asked to wearing a mask in public.
I struggle a-lot with guilt, and how my activism may come across, I often apologise for myself, the idea of “parasite people”, sits uncomfortably with me. In away has my lived experiences and the platform I have a privilege?
Am I furthering my own career on the backs of the struggles of disabled people? I need to make a living, I’m accustom to a wage that enables me to live comfortably. At times I feel I am letting too much of me be public – I’m not sure I want to share all aspects of my life.
Stories are what history remembers. History shows that those who stood up, fought against something when those in power were opposed or didn’t seem to care. We admire them, write about them, make statues of them. Yet still we continue to only listen when the fight gets real, people lose their lives, their jobs, they’re freedom.
Has health and social care loss its focus? The profession of nursing, became an aspirational career after Florence Nightingale understood and showed the world that cleanliness save lives, and that nursing was about keeping things clean, keeping people fed, washed, but that is now not seem as a valuable role. Instead cleaning is thought to be a low waged job, and nurses, do paper work, answer the phone, administer medication. Are left holding the fort when all others go home.
What has happened to my own profession. It is watered down, with stereotypes of expectations. Within mental health setting the notion that boredom needs to be tackled with entertainment, and that this the role of the Occupational Therapist. This is not the case in a physical hospital, through-out my 13 months despite not being able to leave my own bed, no body worried about how bored I might be, I had to find ways to entertain myself, and often at my own expense.
The profession needs to wise up, get back to its roots, review the social model and begin to implement it, whist having an understanding of its critics.
I recently wrote a blog after the Royal College of Occupational Therapist released their new brand this included new ethics, ethics that I was intrigued by and felt held the values that I hold. What also changed was the logo and the loss of a symbol, that again in todays modern understanding of disability rights could be argued as no longer representative. Yet the removal caused so much passion people questioned why the symbol had gone, unable to move on.
If only we were that passionate about ensuring that the profession of occupational therapy is both understood and practiced without compromise, if only we were that passionate about fighting and talking and campaigning to our leaders. Of the power of true occupational therapy and if we could break through the constraints of still a dominative medical model we could really start to make change, Really start to see services that met the needs of the people rather than the needs of the professionals that work in it. Of course this can not be done alone. We must make a noise, take the time to understand and engage meaningfully with those who have the power to make real changes.
Where I’m I to go next? The future is unclear, I’m open to new opportunities challenges, how that fits with managing this within the new reality, is yet to be discovered.
Rachel Booth-Gardiner
