Change won't happen by itself

I’m Georgia Vine, an occupational therapist with lived experienced of cerebral palsy. As occupational therapists – and as part of our Health and Care Professions Council (HCPC) code of practice – we should constantly reflect on and critically analyse our practice to ensure that we are being anti-discriminatory, no matter what time of year.

But I get it; we lead busy lives and sometimes that critical reflection doesn’t happen as often as we like. So, here is your opportunity and friendly prompt to ensure that you are aware of any anti-ableist practices around you during this Disability Pride Month, to take forward to the rest of the year.

Thinking about what anti-ableist practice is was something that I started to do when I was a student. I began to post my reflections on my award-winning blog ‘Not So Terrible Palsy’. Initially my blog was just a ‘go to’ for anything related to disability. But as my student career progressed, and especially during my second year of university, I started to reflect more on my own experiences as a disabled occupational therapy student.

Now that I am qualified, I’m lucky to be able to participate in and raise the profile of disability activism work within occupational therapy as one of the co-founders of AbleOTUK, which was established in 2021. Believe it or not, using my perspective as an occupational therapist and disability activist to explore my experiences is one of my favourite things to do – so much so, that I’ve now written a whole book about it.

This gave me an opportunity to really reflect on my own journey, starting from my birth, diagnosis and the impact this had on my parents and sibling, all the way through school, personal experiences of occupational therapy services, my career choices, application to the occupational therapy course and my professional registration.

Writing my book has been such a meaningful activity for me. It has also given me so much time and knowledge to think about my career in terms of my future activism and what I want my next steps to be as an activist.

My personal perspective

The first section of my book is aimed at young people, parents, teachers and healthcare professionals. I reflect on my childhood experiences, which are similar to many other disabled people. I’ve included interviews that I had with a children’s occupational therapist, my own parents, my cousin, and a parent of a young child who has Down Syndrome* who is currently involved in children’s services. In them, I explore the impact of diagnosis and unpack the conscious and unconscious ableism that is still present within this system from the very beginning.

Writing from such a personal perspective was incredibly difficult at times, especially when I interviewed my parents to recount my childhood diagnosis and the impact it had on us all. It was still very raw and emotional for them.

Overall, I had a good experience within children’s services and I aim to highlight that; yet there is so much more systemic ableism than we first realise. It is not about criticism or blame, just an opportunity to acknowledge things that are often ‘hiding in plain sight’, because ‘this is how we do it’. I would like professionals to be aware of and be able to challenge systemic ableism, so I suggest how change can happen and how we move forward to a better place for all of us.

In the interview with an occupational therapist with over 25-years of experience in children’s services, we unpack all of this and pose a few challenging questions about the standardised assessments frequently used by many healthcare professionals, including occupational therapists. Standardised assessments are often used in practice, but unfortunately, they are standardised based on the non-disabled population. 

So how are they useful? I would say not at all. Who wants to be put in a box anyway, never mind one that compares you to a norm that could never be achieved and just highlights all your ‘deficits’ rather than your strengths?

Reflections on transitioning to an adult As I progress through my life, I reflect on my teenage years and my transition into adulthood – which was one of the toughest times in my life so far. I do suggest a few changes along the way; things that I have identified through my own and others’ experiences. I believe transitioning between children and adult services is a massive area of health and education practice that needs to be investigated, challenged and changed.

As occupational therapists it’s our role to advocate with and for the people that we are tasked to provide a service. The transition from childhood services into adult services requires changes in legislation and cannot just be changed by me, however understanding what they are and highlighting the challenges is the first part of this process.

It is well known by children with disabilities and their parents that the transition into adulthood is very frightening and uncertain as services often just end abruptly and, due to service cuts, are not replaced. We must, as healthcare professionals and occupational therapists, do more. We must start to ask questions, raise the issues with others and suggest ways for a better transition into adult services. Our young disabled people deserve better!

I also explore my experiences as an occupational therapy student with cerebral palsy in my book and highlight the ableist experiences I faced initially in applying for a place at university. I was informed that I could not be an occupational therapist and yet here I am. Yes, it was very dark at times and there were and still are many battles to be fought, but I’m so glad I persevered, as I now have a voice to challenge and change the systems and processes that are in place.

The elephant in the room

I also discuss the elephant in the room of ableism within the occupational therapy profession itself, starting with recruitment and the education of occupational therapy students. This builds on the earlier conversations in my book around ‘inspiration porn’, which starts with children.

I also unpack one of the hardest conversation of all; occupational therapy placements and the ableist attitudes of many educators. Placements are a very stressful and tiring experience for everyone – then add a disability and ableism into the mix and it takes it to another level.

I use my own personal experiences and those of others to provide tips for healthcare students generally and especially those navigating the programmes and placements who may need additional support.

Finally, I go on to share more of the additional challenges that I faced as a disabled occupational therapist to become registered with the HCPC and in apply for occupational therapy jobs.  Unfortunately, I am not alone with this. Sharing this experience again enables me to highlight and unpack the ‘hiding in plain sight’ ableism that underpins the systems and processes within the occupational therapy profession and the regulating body; revealing that it’s time for occupational therapists to have a good, hard look at their current practices and their organisation's systems and stop hiding behind an ‘I work with disabled people so I can’t be perpetuating ableism’ mantra, which is clearly wrong.

My own takeaway is that I know that health and social care services need to have much more of an awareness of disability rights. As occupational therapists, we often say that as part of our role we advocate for our patients and clients, but do we act as activists?

I’m not saying that we need to be the loudest, but we do have the knowledge and skills to be activists. Who knows, it may even help to raise our professional profile in certain areas. Whatever macro or micro changes we can identify that we make with or for the people we provide a service for, we can definitely be activists without shouting from the rooftops. We can advocate for change and challenge the existing status quo by highlighting ableism within our work cultures and review any policies and procedures that enable ableism to be implemented.

I would like to think many occupational therapy professionals are highly aware of systemic ableism, but aware or not, it’s time to do some research:

• Do you know what systemic ableism means for you as an occupational therapist, as an educator and within your organisation?
• How can you, from today, act as an ally, by doing something about it, big or small? As occupational therapists, we really need to stop hiding behind the fact that those working within the disabled community can’t be ableist, because my book illustrates that it’s alive and kicking today in 2024.

I urge you all to look at the systems we work in and look at them in a new light, to see if you can identify how they can present barriers to disabled people.

We need to all take responsibility and identify the changes needed now, because change can be better and stronger as a collective. Working together gives us a stronger and louder voice to enable us to change the future.

Writing my book was my own attempt to start this journey, but there is still a long way to go. I would love you to take away at least one tangible action point from reading this article that you are now aware of and then identify the first step towards implementing change within your own practice or organisation.

To help you start your journey, I am sharing a reflective log using the acronym from ‘Not So Terrible P.A.L.S.Y’:

• Pausing: Stop and think about you have learnt from reading this. What are your main take away points? What are your main questions?
• Analysing: How did this resonate with you personally? Where does change need to start? 
• Learning: What did you learn from reading this article? What can you share with others?
• Solutions: What can be different in your practice or your organisation? What actions need to be put into place?
• Your Plan: How will you achieve these actions? What are your personal goals?

I am incredibly proud and still in disbelief that my blogs led me on to write a book this early in my career. Now it’s time for my book to enable many actions to create change. It isn’t perfect and there are certainly more to be written. I have a lifetime of living in an ableist society ahead of me to share, but for now I’m going to put my keyboard away as I hand the baton to you, as change isn’t going to happen by itself.