Ableism, Blog Post, Disability, Disability Pride

We are making progress but its not far enough – Lets not celebrate #Beyoncé for agreeing to change her #Ableist lyric.

Acknowledgment – This blog post is a personal opinion piece of experiences, thoughts and ideas about my own lived experience of disability. I acknowledge these will not be shared by all in the community, and respect their rights to have, different even conflicting ideas. 

Throughout this blog I use the terms ‘disability,’ ‘lived experiences of disability’ and or ‘disabled’ by this term I mean anyone that identifies with a physical, mental, learning difference and/or those with long term, and/or life changing health conditions. 

This website has an accessible feature, that allows different accessible formats by simply clicking on a button labelled ‘Accessibility Menu’ that appears in green on all pages. It will provide you with a number of options to change the appearance to meet your accessibility needs. 

This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

July has just finished and with it Disability Pride month. I’m part of a group of Occupational Therapist’s that founded @AbleOTUK an Occupational Therapy Network/Advocacy Group for Practitioners, Students, Researchers, Educators and People with lived experiences of Disabilities and/or Long Term Health Conditions.

Throughout July we used our twitter & instagram feed to celebrate and provide resource asking followers to #BeAnAbleOTukAlly. by posting ideas and information to explore Check out this hashtag to see the daily posts.  I also write an article in OT news. Celebrating achievements of AbleOTUK, first year.

We had mostly positive feedback, but at times some of the words we used and ideas we shared were questioned.  Some struggled with the word ‘privilege’ Cambridge Online Dictionary has several definitions

Privilege

An advantage that only one person or group of people has, usually because of their position or because they are rich:

  • Healthcare should be a right, not a privilege.
  • Senior management enjoy certain privileges, such as company cars and health insurance.

A right or advantage that only a small number of people have:

  • At the moment, it tends to be managers or technology-related workers who work from home – it’s seen as something of a privilege for trusted employees.
  • With power and privilege comes responsibility.
  • Be a privilege doing/to do sth It’s been a pleasure and a privilege to work with you all.
  • Have the privilege of doing sth I had the privilege of studying at one of the country’s leading business schools.
  • For the privilege of doing sth Advertisers often subsidize entire TV productions or movie marketing campaigns for the privilege of featuring their brands.
  • Enjoy/earn a privilege It is possible that the company will one day command a premium rating, but the market clearly believes it has to earn that privilege.

The reaction to this word is something I have been reflecting on a lot. 

What privilege is? 

What privileges I have?

What impact having privilege has had? 

What privileges others have, that perhaps I don’t?  

At its simplest,  we understand privilege in terms of, having more access, opportunities, resources, power and influence over others, and that this position often gives that person, the ability to say and do things that others can not.  

Whatever your political opinions, two examples of recent white men in power come to mind. 

Donald Trump and Boris Johnson, where behaviours that would not be tolerated in the work place. Like inciting people to riot, using racist and sexist terms. Lying to Parliament or breaking government rules are excused or even excepted. 

But the idea of privilege is way more complex than that, there are so many factors that impact the chances you have in life.  I often reflect on my now visible disability (using a wheelchair), being a privilege over when my disability was lest visible,  its the same disability, It just impacts my body differently because of other factors. I don’t have to explain my needs, as much. having a hidden disability made me avoided of engaging has having to explain or ask for help. But the physical presents of a wheelchair creates a levels of understanding. However there are still daily miss conceptions, and ablest behaviours.

When my disability was more hidden, the behaviours were still there, just manifested themselves differently.  From being looked at for using the lift rather than the stairs at work, to agreed reasonable adjustments not being followed through. 

And now I can mobilise on my feet, but prefer to use the wheelchair when outside the home, because I can go some much further, do some much more and not feel as tired or in pain like I did before.  This choice is questioned, misunderstood as lazy or even attention seeking. When in-fact in terms of optimising my energy to engage in the occupations, I need, want and are required to do makes so much sense.  

OK OK I hear you, what has your ramblings got to do with Beyoncé, well I’m getting to that.  I guess I wanted you the reader to be thinking about privilege in its broadest terms, and have some examples of everyday ableism before I start to dis the idol that is Beyoncé.

The amazing group of women that founded AbleOTUK have become a daily support system,  and our WhatsApp group is a place to share ideas and thoughts for events and projects but also a place we can air our frustrations. 

Today one of the group shared this Guardian article

The article opens with 

Beyoncé has confirmed that she will remove an offensive term for disabled people from the lyrics of her new album, Renaissance, after it was called “ableist” and “offensive” by disability charities and activists.’ 

It goes on to describe a similar incident in June made by singer Lizzo. When Australian writer and disability advocate Hannah Diviney tweeted about the inappropriate use of the word when viral. Resulting in Lizzo apologising and removing the word from her song. 

The term used which is slang for describing a person with cerebral palsy (one of my disabilities) is widely offensive in the UK, however, in the US still appears in more common use.

The story closed with information that The UK disability charity Sense had tweeted their disappointment in Beyoncé used this term, even more so just a few weeks after it already hit the headlines in another artists song.  But later praised the singer for listening to the feedback and agreeing to rerecord the lyric,  it even went on to say “Beyoncé has a history of championing inclusivity,”

Should we join in the praise that someone has listen to feedback and changes something?  Well yes of course,  given the examples of two white men in power above.  Who continue to not listen and not apologise for behaves and use of language that has been harmful.  It’s refreshing to see that others can show a better example and admit their mistakes.

But I was left with one thought, and it relates to privilege. Beyonce I’m sure would be the first to agree she is in a position of great privilege and great power.  I’m no expert but I would imagine when an artist of her caliber releases a new album a-lot of time and resources go in to the marketing of it,  including strategic thinking of the type of messages the album wants to portray.   

When we have privilege, of which we will all have in some way or over others,  its important to recognise this and try to ensure it is used to enhance the experiences of others without that privilege, rather than disadvantage people more.  

The very fact that this word made it on the album, only explicitly shows that the idea of prejudice against those with disability ‘Ableism’, is not yet truly thought of as offensive,  and we still have a long way to go before acceptation and understanding of ablest views, words and options are just as damaging as those consider racist, sexist and homophobic.  

References

https://dictionary.cambridge.org/dictionary/english/privilege

https://www.theguardian.com/commentisfree/2022/aug/01/when-beyonce-dropped-the-same-ableist-slur-as-lizzo-on-her-new-album-my-heart-sank

OT News July 2022 pages 40-42

Blog Post, Personal Life, Tribute

A Tribute to a Local Legend. – David Walsh, Thank you for the personal impact your campaigning & hard work has had on my life,  for your services to your community and @UKLabour .

Acknowledgment – This blog post is a personal tribute and a reflection of my own lived experiences. This website has an accessible feature, that allows different accessible formats by simply clicking on a button labelled ‘Accessibility Menu’ that appears in green on all pages. It will provide you with a number of options to change the appearance to meet your access needs. This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

To David

I’m from a family of labour party activists. Growing up I have fond memories of the family home hosting meetings, BBQ’s and being a central hub during elections. 

Going out canvassing as a young child, I remember once really needing a wee, and my dad having to ask a woman we had canvassed if I could use her down stairs toilet.  But one of my strongest memories is of often answering the land line at home, and hearing a man ask to speak to my mum. Over the years my brother and I  would joke with her, whenever he rang, saying that it was the man that doesn’t like his own name.  

This man was David Walsh,  he used to say is name so fast, hence in our young minds created this idea he must not like his own name, but as I grow up I learnt that this was not the case,  Instead David was a formidable mind and great asset to the Labour Party. 

I will leave it to others that knew him better to write about the impact he has had on his community with his endless work for his constituents as a local counsellor,  and the work he did alongside Ashok Kumar MP.  The dynamic duo. 

What I will talk about his is great sense of care for others.  Throughout my life I have needed assistance from my local MP’s, to get access to services and treatments I’ve needed, because to put it simply if you have a disability, you are a second class citizen,  that has to endure red tape, social care and health services that are not designed to meet the needs of those who use it, with ill written criteria, and ableist assumptions about what you can and/or can not do.  


I have had interventions from Ashok, Tom Blenkinslop, and now I have moved to Middlesbrough Andy McDonald.  From ensuring I was given a place in a main stream school, being statemented  at school, help to receive the correct benefits, and to get a blue badge when I was denied it, to lobbying health commissioners to get me a place in a rehabilitation ward following contracting covid 19.  

I know enough about local politics to know that the letters and work your MP puts in to help with such cases, is often done by the staff they employ,  So I know I owe both David and Ashok a lot for those opportunities they made possible for me to gain a good education.  

David had his fair share of ill health, something we have shared in recent years.  But this never stop his determination to fight for the rights of others,  his own experiences of an under funded and illogical social care system only fuelled his determination more to advocate for better services for others.  Sadly and embarrassingly he was let down many times by services that either could not manage or did care enough to manage his unique and complex needs nearing the end of his life.  

David would often send me messages of best wishes and support, when in my 13 month hospital admission during the pandemic.  David also spent some of this time in the same hospital but a different ward.  We used Facebook Messenger to keep each other going. For most of this time visiting was not allowed and having someone that knew the torture of these strict but necessary pandemic rules on hospital visitings and the impacted it had on your wellbeing was comforting.  

David spend the last few weeks of his life back in hospital.  In his last week when we were given the news he was on end of life, I visited three times.  On the first occasion he was sleeping,  I sat and read the Guardian to him, I hope he could forgive my stumbling reading aloud,  a skill I don’t do well, but one I’m able to do, because of access to a main stream education, and specialist dyslexic teaching.  

Visiting on Saturday 16th July with mum we were pleasantly surprised to find an alert David who wanted help to contact a few people, and to get his laptop working again.  

We had a little discussion about the current tory leadership race,  and a chat about our shared experiences of life living in hospital.  David was aware he was very ill but his determination to keep living was very apparent.  I left him happily listening to radio 4.  


My last visit on Tuesday 19th July arriving early as I knew the day was going to be hot,  David was asleep,  but made noises in response to hearing my voice.  I again read some of that days Guardian stories, and was present when a Doctor visited,  was given an update.   During this time I made a point of informing this Doctor who he was treating.  I both work in health care and have extensive experiences of being on the receiving end of it.  Working in health care can become routine, sometimes it’s important to humanise  people receiving care.

On hearing David was a labour councillor and also worked alongside Ashok, the Doctor respond ‘Oh I remember Ashok’,  my dad was a labour man,  he then turned and spoke to David rather than speaking over and about him,  telling a story of his dad working for ICI. 

David looked peaceful.  It was a great privilege to sit with him and quietly reflect on the differences he will have made to many.  

Rest In Peace David,  Thank you for the personal impact your campaigning and hard work has had on my life,  for your services to your community and the Labour Party.  

Photo of Obituary of David in The Times 1st Aug 2022

Read more about David

The Northern Echo Teesside Gazette

The Times

Rachel Booth-Gardiner

Ableism, Blog Post, Disability, Disability Pride, Occupational Therapy

#DisabilityPrideMonth – What, When & Why

Acknowledgment – This blog post is a personal opinion piece of experiences, thoughts and ideas about my own disability. I acknowledge these will not all be shared by the community, and expect their rights to have different even conflicting ideas. This website has an accessible feature, that allows different accessible formats by simply clicking on a button labelled ‘Accessibility Menu’ that appears in green on all pages. It will provide you with a number of options to change the appearance to meet your accessible needs. This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

Disability pride started as a one day event but since 2015 the entire month of July has become an annual worldwide event to celebrate disability and the diversity of the community. July was selected as this was the month The Americans with Disabilities Act (ADA) was founded on July 26, 1990. 

Why Pride?

The word ‘Pride’ is used in many equality movements, the word means;

  • a high or inordinate opinion of one’s own dignity, importance, merit, or superiority, whether as cherished in the mind or as displayed in bearing, conduct, etc.
  • the state or feeling of being proud
  • a becoming or dignified sense of what is due to oneself or one’s position or character; self-respect; self-esteem
  • pleasure or satisfaction taken in something done by or belonging to oneself or believed to reflect credit upon oneself: 
  • celebration of a specific minority group and affirmation of equal rights for members of that community:

Disability Pride – aim’s to shine a light on physical, learning, hidden disabilities and mental health conditions, by enabling open conversations about disability, encouraging people to, sharing experiences, raising awareness and challenging barriers whilst celebrating the diversity, a pride with the community.

In 2017 Ann Magill designed a disability pride month flag, which she later updated in Oct 2021, she has waved her rights to copyright and it has now been adopted by the movement.

It has a  black background that represents the colour of mourning for those who have suffered from ableist violence, rebellion and protest. The 5 colours represent the variety of needs and experiences.  Read more about the Flag on Ann’s website

During July the @AbleOTUK team of which I am a member will be using their social media platforms, to promote the month, and encourage you to be an ally to those people with disabilities and/or long term health conditions.

Regular reader’s of my blog will know I have a number of disabilities, some from birth and others I have developed. If I had just one thing for you the reader to take away from this blog its this. Disability and a persons relationship with their disability is very complex. It can take a lifetime to really understand its impact, and its impact is often rewarding. Seeing the world through a disability is a gift you should be envious of. It has taught me some much, shaped my thinking, my relationships and life goals.

But it’s those without this experience that have shaped the narrative. Resulting in offers of help, out of sympathy, or even guilt. Often that help comes with expectations, criteria, that keeps the power and you are expected to be grateful. Disability pride month is so needed, to educate and enlighten others. It is not something to be feared, not something that can be ignored and not something that can and should be fixed or cured.

The likelihood is that if you live a long life, at some point you will develop a health condition and/or disability. The world needs to put accessibility at the top of its agenda, hand in hand with sustainability. Considering and making your space, platform, program, film, TV show, new invention, book, restaurant, experience, What ever it is, truly assessible will only improved everyones experience.

So during July educate yourself, you will have ideas, thoughts, values shaped by your own experiences that are ableist – Take some time to challenge those. If you like share them in the comments section or on social media.

Rachel

Blog Post, Covid, Occupational Therapy, RCOT

Reflecting on #RCOT2022 Conference Blog post 3 – PLENARY SESSION: My very own “bear hunt”. A journey back from COVID Michael Rosen, children’s author and poet

Acknowledgment – This blog post is a personal opinion piece of initial thoughts after attending conference, with an aim of being a critical friend, often just asking questions I have yet to determine the answer, if indeed there is an answer. This website has an accessible feature, that allows different accessible formats by simply clicking on a button labelled ‘Accessibility Menu’ that appears in green on all pages. It will provide you with a number of options to change the appearance to meet your accessible needs. This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

Micheal Rosen is a children’s author and poet, best known for his book ‘We Are Going On A Bear Hunt’.  He joined the RCOT conference this year to kindly give his account of his recovery journey from Covid 19 that included having to learn to walk again; He has also written a children’s book about this experience called Sticky McStickstick ‘The Friend Who Helped Me Walk Again’.  

We can learn so much from listening to people who have experienced receiving care and the impacted it had. It’s important for services to grow and develop to hear what was good and what was not so great, and address both.   

Regular readers of my blog will know I have my own recovery story from Covid 19 and along hospital stay. Initially I intended to just write about Michael’s journey, however his story made me reflect on mine, parts I have not shared yet, and this has become the focus of this blog post.  

Intensive Care 

Intensive care units (ICUs) are specialist hospital wards that provide treatment and monitoring for people who are very ill. They’re staffed with specially trained healthcare professionals and contain sophisticated monitoring equipment. ICUs are also sometimes called critical care units (CCUs) or intensive therapy units (ITUs). – NHS.UK

Micheal talked about his long induced coma, his lack of memory of this time.  Explaining having to rely on his wife and information written in his ICU diary by staff for him to tell this part.  He touched on the impact of the pandemic on limiting visiting from family,  recalling a time his wife was able to visit in an atrium of the hospital and played videos of his family to help bring him round.  He recalled some therapy input whist here. Using the term therapist thought-out his talk, acknowledging he could not recall who was who during this time.  

When asked if his psychological needs were addressed, he stated at the time I thought yes,  but on refection they’re were gaps.   He reflected on attending a parliamentary review of intensive care, where there was an acknowledgement that more needs to be done to combat the impact of trauma, for those that have lived through an ICU admission. 

My own memories of ICU are mixed up with things I now know were not real, being kidnapped, and using a swimming pool on the roof of the hospital,  there are others I have yet to determine were real, and it is those that have really impacted on my mental health. 

I was very low and suicidal at times.   During my time in ICU I was seen by a psychologist, and later when in a rehab ward had weekly phone-calls with a councillor from liaison psychiatry.  All of which was useful, but after a while I felt it was just getting me to mull over what had happened again and again, rather than find ways to move on. 

In recent months this trauma came back, finding help in the community was so much harder.  A GP who was unfamiliar to me basically said, you had great access in hospital, and left it at that.  

I sought help via my employer,  which did get me seen, assessed and put on a waiting list, for treatment which I am still waiting for.  The assessment process is repetitive, in all access to physiological care and long covid care, I have been asked to complete questionnaires about the state of my mental health.  Which I’m sure are intended as a risk exercise and outcome measure, but this was never followed with any useful treatment,  repetitively being asked about low mood and suicidal thoughts only makes me relive them.  

Reflection  – Throughout my 15 years working as an occupational therapist in mental health,  I have used outcome measures that ask about the negative impact of a persons mental health on their occupational performance.   We would then set goals often in that same session to work on. Talking about your feelings is important, but becoming more proactive and focusing on things you want to achieve just makes more sense. (but I am bias)

Challenge – As occupational therapist we are dual trained,  but perhaps the systems we work in that are diagnostic lead pressures us to forget this?  What could you do differently in your practise to ensure you are addressing both physical and emotional impacts on occupational performance?

General ward and rehab 

Once Michael left ICU he was moved to what he called a geriatric ward –  he stated he did not want to criticise the NHS, but this was not the right place for him.  Later he was send to a rehabilitation ward where he got the help he needed including lots of physio and occupational therapy.  

Micheal talked about the motivation of others to engage in the therapy; using the analogy of school to explain his thinking, and people ‘bunking off’ when describing someone else’s lack of motivation to engage in the therapy.   He reflected a lot about staff and family encouragement, talking about walking again which he said he thought was nice but not possible.   

As he engaged in therapy, his identity became intwined with the equipment he was using.  He talked of being a walking frame person, then a wheelchair person, in his book he says he loved the wheelchair, and was able to move around independently seeing out of the window for the first time.   Followed by a stick person, and eventually able to walk unaided,  touching on a relationship with his walking stick that was positive, even feeling guilty at not needing it and leaving it behind.  In his booked he mentions its there in the hall way just incase.   

Since the presentation I have purchased this book and have read it a number of times with my 4 year old niece Lyra,  who has been a big part of my motivation in my recovery.  We love the book, and would highly recommend.

Although my journey of recovery is much longer than Michael’s, there are similarities.   After ICU I too was sat on a ward that did not meet my needs, whilst waiting for a rehab bed.  Micheal joked about being the opposite to Amy Winehouse, ‘I will go to rehab yes yes yes.’  for me it was ‘I want to go to rehab but the criteria says no no no’  

Sat for months before a bed in a rehab ward was agreed.  I did however have access to therapy, including speech and language, daily physio and occupational therapy, and regular input from a dietitian.  I have very fond memories of this input much of which I have focused on in other blog posts.  As I write this a big smile beams across my face, it was a painful time, but I very much felt cared for and not given up on.  

I have mixed memories and feelings about my time in rehabilitation. It was a neuro-rehabilitation ward, my existing cerebral palsy was what qualified me to meet the criteria, has a neurological condition it was having an impact on my body rebuilding itself from the de-conditioned of a nine month hospital stay.

I had little involvement with occupational therapy when in rehab.  The OT’s mainly worked on the functioning impact of those on the ward with brain injuries. They ran set groups; as treatment sessions, that did not meet my needs.   I was however given some goals, and a quiet space to do some things that I wanted to do, mainly writing for my blog or presentations for conferences of which I did twice from my hospital bed.  Later OT were involved to arrange discharge and the equipment I would need.  

I recall when engaging and listening to the others I shared a bay with; these are the insights I need to remember and take with me as I begin to return to work.  Hearing what people really felt about the therapy they are experiencing.

Like Micheal explianed their were some including me who wanted to ‘bunk off’ the gym occasionally.  Finding the motivation to engage is hard and on refection is often harder than doing the exercises. More could have been done to explore this I feel. Often the other ladies in my bay would express frustrations, of not being listen too, excluded from ward meetings about themselves. As for therapy, time limitations of physio therapy sessions in the Gym, not feeling they were improving,  or disappointed in the exercised done, were very common. I recall an occasion where a nursing assistant, commented on my lack of engagement and not getting out of bed at the weekend. There was no therapy at weekends and due to covid no visiting either, I was unable to leave the ward unaided and the ward did not provide activities. What would you have done?

Others I shared a bay with often didn’t see the point of the groups or tasks they were given by Occupational Therapy. Including a breakfast group, in an ill-equipped kitchen. A quiz group, and being followed walking to the hospital shop.   Of course as occupational therapist we know why an OT might engage people in these tasks,  but what’s missing?  Are we guilty of routine assessments and engagement rather than individualised assessment, goal setting and treatment interventions?

Reflection – The more I reflect, the more I see that criteria to access services and the manufactured environments and tasks we create to engage people, may be a barrier to assessing true occupational performance?  A necessary one at times but something to be mindful of perhaps?

Challenge – Write down what barriers you think your service has. Be creative, (The answer isn’t always just more staff)  Then do something about it.  

I have one more refection to come and will post as I finish it. Please do share your thoughts. I would also recommend checking out RCOT Highlights of conference here . Remember for your continuing professional development its important to evidence you’re learning. One way to does this is to use RCOT’s 5 min reflection tool or even the Equity, Diversity and Belonging reflection tool

Occupational Therapy, RCOT

Reflecting on RCOT Annual Conference 2022 -Blog post 2 – ‘PLENARY SESSION: Levelling the playing field;

Acknowledgment – This blog post is a personal opinion piece of initial thoughts after attending conference, with an aim of being a critical friend, often just asking questions I have yet to determine the answer, if indeed there is an answer. This website has an accessible feature, that allows different accessible formats by simply clicking on a button labelled Accessibility menu that appears in green on all pages. It will provide you with a number of options to change the appearance to meet your accessible needs. This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

‘PLENARY SESSION: Levelling the playing field; Leadership, physical inactivity and occupational therapy with Lyndsey Barrett Director and Lead Occupational Therapist, Sport for Confidence and Dr Chris Whitaker Senior Disability Manager Sport England

Lyndsey shared her own story of recovery and how occupational therapy played an integral part, reflecting on the occupations that were important for her to get back to.  Which lead to developing Sport for Confidence, with a no labels model. 

Lyndsey articulated how she provided occupation focused intervention using sport activities, giving great examples of how these interventions could enhance occupational performance.  For example a swimming session can achieve so many goals, including washing and dressing practise.  What I liked about this is the natural way to assess and develop  skill, rather than a manufactured task for the purpose of assessment, which is often the case within hospital settings. 

Lindsey’s passion and enthusiasm for the profession shone through, and what she has achieved within this non traditional setting is core to what occupational therapy is meant to be.  

Also in this session was Dr Chris Whitaker, Senior Disability Manager, Sport England’. Who talked about his leadership role and what he is doing,  there were many statements that made me think.   He talked about the impact pandemic had it increasing inequalities and barriers for those with disabilities.  

Some take home statements from this session for me were: 

  • Getting people more activity by transformation sport and physical activity to fit in to peoples lives rather than us expected people to fit physical activity in to their lives. 

Reflection – How health care is very much build to suit the needs for those working in it rather than those accessing it.   There is so much to learn here.  

  • Lyndsey talked about inclusive outcome measures are hard to come by, 

Refection on how do we ensure outcome measures are inclusive, co-production and shows the information required.  

  • Lindsey challenged barriers of new ways of managing money the pandemic has created.  Not everyone has access to card payments, online banking as away of paying for things. Cash is important,  touching on the idea that some of that is about skilling people but some is also about understanding that using cash is preferable for some. 

Refection – made me think about my Dad’s reluctance to use self checkouts,  my initial thought was I need to teach him how to use these, because I find them useful,  but that doesn’t mean its right for him.  

Reminded me to set the goals people want rather than what and need rather we think they want and need.

I have more refections to come and will post them as I finish them. Please do share your thoughts. I would also recommend checking out RCOT Highlights of conference here . Also remember for your continuing professional development its important to evidence your learning. One way to does this is to use RCOT’s 5 min reflection tool or even the Equity, Diversity and Belonging reflection tool

Blog Post, Disability, Occupational Therapy, RCOT

Reflecting on Royal College of Occupational Therapists Annual Conference 2022 – Blog 1 The Online Platform.

Acknowledgment –  This blog post is a personal opinion piece of initial thoughts after attending conference, with an aim of being a critical friend, often just asking questions I have yet to determine the answer, if indeed there is an answer. This website has an accessible feature, that allows different accessible formats by simply clicking on a button labelled Accessibility menu that appears in green on all pages. It will provide you with a number of options to change the appearance to meet your accessible needs. This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

Firstly I want to reflect on the platform itself, I did not attend last years conference so I’m unsure how it compares.  This year RCOT conference was held on line over 2 days 14th & 15th June 2022. At a cost of £99 to members less for students. Also regional committees, specialist sections and those in steering groups had access to a small number of free tickets to use as they saw fit. I accessed a free ticket via my region, which was agreed as I was co facilitating a round table event.

Having access before and for 6 months after is great.  Being able to go back at recall a thought – you can’t do that face to face. I was able to familiarise myself with the platform and there was videos to explain how to use everything which was useful.  The headings were clear and I found the site easy to navigate.  

I loved the chat features, being able to see the audiences response as the presentation was happening adds so much richness,  and is something you don’t get in a face to face conference.  I especially loved the green hearts and ability to ask questions throughout the presentations, lest daunting than putting your hand up in a pact room?

Accessibility was thought about, although there is always room for improvement. The ability to have captions really helps me focus on what is being said.

Chat rooms were useful but I wanted the ability to either ask for a subject to be added or create one,  The RCOT hub could have been more interactive to help networking opportunities, as Chair for RCOT North and Yorkshire Committee I would have liked a easy way to connect with any OT’s in the region.  

There is so much a I miss about meeting face to face, the networking, very much the social element of conference as been the reason I have gone back year on year. The ability to focus solely on conference, rather than the distractions of your home or work environment.

But perhaps what is best for the membership to get access to this rich resource, and lets face it in the 40 plus years conference has ran, it has been only been accessed by the same privileged few in positions of power with access to money and time to get away from home and work. I acknowledge here that is not the case for all, and there are many that have attended because of there love for the profession and there for priorities the cost for them. I include myself in this, over the years I have self funded, being funded by my employer or by the college when I have been involved in regional groups.

Someone said to me they would never attend conference, when I asked why, although this person is a practising OT, they did not see this as a place they belonged. I may have been blunt in my description of the usual suspect that often attended year on year, White, middle class women, in leadership roles within the profession or working within academia. (I may have also said with their twin set of pearls)

I say this in the full knowledge of what you see isn’t necessarily what it seems. I know my mother will not mind me using her as an example, by the time she was attending conferences regularly she was in leadership positions with the NHS, a well educated middle class women with a home. Her background however, Born to an Irish father who she lost age 5 and a uneducated working class English mother, growing up in Paddington London in a two room flat, housing 2 children, her mother and grandmother who did not leave her bed, becoming a mother herself at a young age. It wasn’t until her late 20’s that she finial have the means and opportunity to attend university after passing an IQ test. I acknowledge that being white and from a stable family, that supported her gave her privilege.

So why does this person not believe conference is for them?

What is the point of conference?

To allow those with the means to meet up, share ideas, drink wine, enjoy the sun? Trust me for some reason the sun is always shining when its RCOT conference, wether down in Brighton, up in Scotland, near home in Harrogate, or over in Northern Ireland and even this week although on line the sun is out. Someone or thing clearly approves of Occupational Therapy?

Or is the point to make waves, use the research, practise, platform and opportunities conference gives to provide a better experiences for those accessing occupational therapy? Can we really get that from returning to a yearly event held face to face with the same people in attendance?

For me conference has never been accessible for the membership, and why not?

Does a future using online opportunities give us the most inclusive, powerful way to enhance and equipped occupational therapist with the right tools to make change and a difference to those using our services?

A challenge perhaps can this be free to the membership, can you imagine what impact that might have?

I am yet to make my mind up and would love to hear from others.

I have more refections to come and will post them as I finish them. I would also recommend checking out RCOT Highlighted of conference here . Also remember for your continuing professional development its important to evidence your learning. One way to does this is to use RCOT’s 5 min reflection tool or even the Equity, Diversity and Belonging reflection tool

Blog Post, Feminist Themed, Politics

On International Women’s Day 8th March 2022. A Thank You to the women who shown their support during my two year battle with Covid 19 – #BreakTheBias

In memory of Sue, may you rest in peace. 

Acknowledgment –  Blogging is an occupation I enjoy engaging in, as an effort to appease and make sense of my thoughts. It’s a personal opinion piece based on my own experiences and observations. Any criticism within this blog is not to be taken personally, it is more a criticism of the systems the individuals sometimes have to work within.  This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

Regular readers of my blog will know I’m keen on a dictionary definition as a starting point to help, focus my thoughts.  The idea for this blog came about at the weekend whilst I attended a hendo in the lake district with a group of amazing women, who reminded me, that women are remarkable creatures that truly need to be celebrated, what better day to do that than the 8th March International women’s day. 

Finding a definition of ‘woman’ (plural women) however has its difficulties as in recent years, dictionary definitions have been challenged, as out dated and sexist.  The current definition in the Cambridge dictionary: an adult female human being.  This blog is not a debate on what defines womanhood, for me a woman is anyone who identifies as one.   

International Women’s Day IWD (March 8) is a global day celebrating the social, economic, cultural, and political achievements of women. The day also marks a call to action for accelerating women’s equality. IWD has occurred for well over a century, with the first IWD gathering in 1911 supported by over a million people. Today, IWD belongs to all groups collectively everywhere. IWD is not country, group or organisation specific. This years campaign theme is  #BreakTheBias We are being asked to  ‘Imagine a gender equal world. A world free of bias, stereotypes, and discrimination. A world that is diverse, equitable, and inclusive. A world where difference is valued and celebrated. Together we can forge women’s equality. Collectively we can all #BreakTheBias.’

https://www.internationalwomensday.com/Theme

On international women’s day I want to reflect on the strong, supportive, focused, driven, compassionate woman I have met during my long recovery from Covid 19, and the impact they have had on my well-being and journey.  

There are so many women to thank, and I hope I have remembered them all.  

I guess the place to start is at the beginning, with the two female paramedics that collected me from home and took me to A+E, it was at the very beginning of the pandemic no one really knew what they were doing, they came in wearing face masks, listened, were gentle, I felt I was safe with them, they understood it was scary having to leave my partner behind due to the pandemic rules, and stayed with me, until I was seen by someone in A+E. 

The next few months are very hazy,  but I have memories of kindness, compassion and sheer brilliantness from woman working across both hospitals I spent over a year of my life in. These are a few that stood out for me. I will use first names when appropriate and where I remember them.  

To Rachel and the Physio therapy team at the Freeman – I remember a feeling of dread, at the things you were asking me to do, I was scared, in pain and  overwhelmed, but you did it with gentle encouragement, set goals and celebrated the little wins with me. I felt your determination to get me well again. 

To Ann and her Occupational Therapy team at the Freeman – I remember lots of laughing, lots of crying, lots of hand holding. Skills of problem solving evident in every intervention, ill-equipped environments and occupations like having a warm shower were made possible with your knowledge, kindness and determination. I felt respected 

To the two speech and language therapists who, worked on my swallowing, I remember you coming back week after week to try again, your words of encouragement when I could not swallow, and those facials that were beyond your work remit but very much appreciated. I felt cared about.

To the countless nurses, nursing assistants, ward managers and domestic staff in intensive care, and on ward 6 at the Freeman.  I remember you taking the time to plait my hair, and help manage it when it started to fall out.  Accompanying me to scans, wiping my tears, holding the phone when I had no strength, so I could speak to family, taking me off the ward in my hospital bed, to see the outside and feel the fresh air on my face, writing in my ITU diary so when was well enough I could read and understand a little of what happened to me. For sharing stories, and news from the outside world, appropriately sharing parts of your lives, for the Netflix recommendations.  I felt valued 

To the psychologist who visited regularly to help me, managed dark and low thoughts at a time I wanted to give up. I felt heard.

To my consultants secretary Hannah, who always followed up on requests for information from my mum when I was to unwell to remember, for your emails and phone calls since my discharge to arrange appointments and further surgery – I felt a personal touch that is often lost within large organisations.

To Dame Jackie Daniel Chief Executive, and the other women on the broad of Directors for Newcastle hospitals NHS trust, for doing an outstanding job on leading an outstanding NHS Trust as certified by the CQC, and by my 9 month stay in the care of your trust.   I agree whole heartedly with the CQC report, some how a culture of true compassion resides throughout your staff groups, this comes from compassionate leadership that values its staff. 

My experience of James Cook University Hospital was a little different, and I have to be honest in my experiences, the culture is very different.  I remember being moved wards a lot, poor communication with family, and restrictive practices that often felt like you were not seen as an individual, just a bed occupant.  However there were many exceptions to this and thank-yous to be made.

To the Dr who ordered me a curry because she could just see I needed a pick me up. 

To the ward manager and staff nurse who took the time to listen to my concerns, and tried to resolved them. 

To the ward staff that took the time to chat, pushed me down to the chapel and came back for me later so I could get some peace from the busyness of the ward.

To the women who worked in the shop, and help move things, but also let me learn how to manoeuvre in tight spaces as I learnt to use my electric chair, and recognised the improvement over time.

To the trainee Chaplin who visited at a time I was in isolation, and shared her remarkable story, and listen and sat with me. 

To the women on the patient liaison services, who responded to my many emails and tried to resolved my concerns around restrictive practises. 

To the Occupational therapist who understood, I didn’t need dressing practise or to attend breakfast club, but a quiet space to focus on writing my blog and the presentation I gave to a conference from my hospital bed.

To the woman from liaison psychiatry who I had weekly phone calls with to make sense of traumatic thoughts and memories of my time in intensive care. 

To Jane and Fiona my union reps who worked on my behalf to ensure my rights as a worker in the NHS effected by covid 19 were recognised, and catered for.

Thank you for shining a light and demonstrating that despite a culture that for me is not patient focused, you listened, you were kind, you noticed, you cared. 

To the incredible women I shared a six bedded bay with for 3 months of my life, you amaze me with your strength, understanding, and camaraderie.  Hearing a persons story is inspiring, witnessing its development is a privilege, thank you for sharing.  We had each others back, were able to sense when space was needed. I will always treasure this very odd time in my life and use it as a tool to remember even in a woman’s most darkest, weakest moments she is strong and holds a willingness to push back and find herself again.  As I think back to this time I am reminded of a favourite quote of mine. 

“Courage calls to courage everywhere, and its voice cannot be denied.”

Millicent Fawcett

Once home requiring full time care, there are many women to thank. 

To the carers that visited three times a day, of which at times I had issues with, feeling a burden, not heard and rushed.  Again there were exceptions to this. Carers that truly cared, took their time despite the absurd working conditions these women work under, showing compassion and joy in their work.  

Most carers that work in peoples homes are managed by care agencies that are privately own. Care-workers and the work they do are not valued by society, it is classed as unskilled,  but believe me, there is so much skilled involved, to do it right.  Most carers are only paid for the time they are scheduled to be in a persons home, not their entire shift and travel like those that work in a hospital or care home.  I can’t help but wonder if caring was a  male dominated profession would these work conditions be tolerated?   

To Vicky, Rosie and all the staff at Tees Nero physiotherapy, for taking me on, when others had given up, for your belief and determination that I would walk again, for the banter, belly laughs.  I would not be here upstairs in my house writing this without you all, I will forever be grateful.

To Sarah her mum and the other ladies I’ve meant during physio and hydro, for your knowing smiles, and words of encouragement. 

Finally to the amazing women I am so privileged to have in my life. 

The incredible online occupational therapy community who, sent my mum and partner messages of support when I was very ill, and when I was well enough to engage, sent me and those I shared a hospital bay with letters of encouragement and care packages. 

To Jennifer, my mother in law Colleen, Auntie Sue, Godmother Pam, Friend Jo  Who regularly called my mum when I was in intensive care, giving her the strength to carry on in which must have been the most difficult time, particularly during a world pandemic. 

To my sister in law Amy, and step mum Linda, for mucking in, and becoming part-time carers, giving my husband and mother well deserved breaks. 

To Kirstie, Kelly, Nichola, Rachael Jo and Janine for always being there for me and Anthony. For your Face-Times at a drop of a hat, just to listen to a rant.  For random gifts in the post that put a smile on my face. For the timely visits to ease the chaos , and the free Indian head massages.  But most of all for your friendship.

To the OTalk and AbleOTUK team members for your inspirational work and commitment to the profession and for the opportunitites being part of these groups of women has given me. I am beyond privileged to know and work with.

To my amazing niece Lyra, for your energy, you’re pure sassiness, and humour that motivates me to keep on going. 

To the women most of which I had never met before at what was the most enjoyable hendo weekend away, and the first time I have been anywhere without my husband or mum over night since being discharged.  What you didn’t know was the struggle it took for me to get there.  I had heard on the Monday that Sue, a lady I shared a bay with at James Cook had passed away and it shook me to the core. I didn’t want to go, I didn’t think I had the strength to be on my own, without Anthony, I didn’t want to feel a burden, that compromises had to be made for me to be there.  What I found which I should have know with it being Beccis hendo, was a group of women, that were accepting that didn’t see me and the wheelchair as an issue or a barrier, that included me in everything.  I heard stories of hard working women, holding things together during the last two years, juggling family life and work, some who had made life changing decisions.  We laughed a lot, drank a bit too much, and got covered in glitter,  Thank-you for reminding me how incredibly resourceful women are, and for your kindness, at a time I really needed it. 

To the reader- thank you for taking the time out of your day to read this, please share your thoughts and share this years theme #BreakTheBias, take a picture of yourself with your arms crossed and post it on social media.

And most finally to my Mum the woman that has always been there, always fought for me, always supported my choices, my ambitions, my dreams.  You are one incredible lady who chooses in her retirement to continue to offer her knowledge, skills and expertise to anyone who needs it.  Thank-you for teaching me how to be a woman with strength, integrity, for showing me that caring, and helping other women to succeeded is the best type of woman to be.

Reference 

Ableism, Blog Post, Disability, Disability Pride, Personal Life

How a random survey phone call, helped me un-muddle my thoughts and conclude. – Health and Social Care Services are not patient focused and occupational therapy is compliant with this. 

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 DisabilityVolume 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 

Blog Post, Disability

Accessible Statements Confusion? Are We Still Missing the Point?

Acknowledgment –  This blog post is an opinion piece formed from personal experience, and reading on the subject over a number of years. Its aim is to stimulate thought and respectful debate. Throughout this blog I use the term disabled/ disability, by this I mean but not exclusive too – Anyone with lived experiences of disability, learning needs/disability, mental ill health and chronic illness, whist also acknowledging that for some this term does not reflect their experiences.  This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

By law (Disability Discrimination Act) 1995 businesses and organisations need to make their facilities accessible, and following the 2018 Public Sector Bodies (Websites and Mobile Applications) (No. 2) Accessibility Regulations Accessibility regulations mean public sector organisations have a legal duty to make sure their websites and mobile applications meet accessibility requirements.  Public sector websites and mobile apps must now also be accessible and have an accessibility statement published.  

Its in business owners (however small) own interest to ensure their buildings are accessible, not just by installing an access ramp but also ensuring they comply with all the stipulations that have been drawn up under law. 

The confusion I found with the introduction of accessible statements,  was that they only apply to making the website/app space accessible. Missing the element I was looking for when visiting these sites. Information about how accessible physical spaces are with clear information available, on websites/apps.  

Often I would look up a place I wanted to visit, to see how accessible it was, to find the accessible statement only refers to the webpage, which is really important.  However the information I wanted was lacking.  I might come across ‘accessible toilet ‘available or contact us with your access needs.  By law I know what the minimum standards are but what does ‘accessible’ really mean?  

What is accessible to one person may not be to another.  Meaning the information provided is key to individuals making an informed decision about how accessible that facility is to them.

Before being a wheelchair user, the information I wanted to know was, what the furniture was like, it might sound odd to you, but comfort is important. How high are the seats and tables, could I stand independently from them without drawing attention to myself? Is there good back support? What’s the parking like? How far will I need to walk? Is there an accessible toilet because other toilets are often low and accessible ones are higher and have rails I can use to help stand up, if there is stairs how deep are they? Is there a rail on both sides to hold? Now I am using a wheelchair, an ‘accessible toilet’ meant nothing to me, I had questions,  How is it accessible?  Will it meet my needs?  Often having to email or ring for further information.  Imagine every time you wanted to leave the house having to think about every element of your day.  Will there be steps, will I be able to use the toilet,  reach what I need, have space to get round? 

There are many great apps and websites out there trying to provide and improve information about how accessible a place is, but this relies on you knowing about these apps and websites.  For me I became increasingly frustrated by the lack of information on websites and social media accounts of individual businesses and organisations, I wanted to visit.   Why should the person with the access needs do all the research? Wouldn’t it be great to lookup the information you need quickly, and without the fuss or having to make a phone call/email for more information? 

Not everywhere is going to be accessible for everyone, but by not providing clear and detailed information, you are potentially missing out on business and not being inclusive, in 2022 we all want to be inclusive right?  

I began to challenge businesses and public places about the access information that was available. Asking for pictures of their ‘Accessible toilets’, descriptions of other areas and photo’s. Challenging the lack of detail in the information I found. Also challenging some of the ableist way things were described. In March I am going away for the first time without my husband since being a wheelchair users with friends for a hen do, the place looked great, its set up for groups and has rooms with multiple beds, ideal for hen dos. The website had some access information but it wasn’t clear, a few emails later and I felt ok I can do this and I know my friends will also help if I need it.

But one statement in the email correspondence struck me right in the face. They explained that the ground floor was fully accessible to a wheelchairs user and clarified my questions about rugs and positioning of furniture. When describing the accessible bedroom which also had multiple beds, but enough turning space. It was explained there was a fully accessible bathroom and provided a picture, then went on to say it also had an other shower room which was not accessible for a carer. In all the other rooms people are expected to share the bathroom but in the accessible space there are separate bathrooms for the able and disabled?

Just think for a moment what that statement might suggest to a person with a disablilty?

I realise this is a complex topic and often there is need for spaces that are separate to meet peoples individual needs, but there is something to be said for segregation being acceptable even seen as progress when it comes to the accommodation of disability in modern times.

Please see this blog sites Accessible statement here

Blog Post

The Royal College Occupational Therapy (RCOT) – New Brand Reflection – I like it and the Phoenix needed to go.

Acknowledgment –  This blog post is a personal opinion piece of initial thoughts of observations of comments on twitter, with only google research done in effort to appease my thoughts from swimming around my head.  This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

Earlier in the year I set myself a challenge to challenge all my initial thoughts the following hopefully demonstrates my thought process.

Twitter observations – a good buzz about new strategies, vision and brand, well done RCOT your have listen to feedback and made changes, some concern that the images are grainy when viewed on smart phone,  most see themselves represented,  apart from perhaps those from a LGBTQIA+ community, with acknowledgment that is can be hard to represent, adding useful advice around including symbols associated with the community to some of the images. There was in someway understandably a lot of disappoint in the lost of the Phoenix in logo change. 

Challenge to the Feedback.

RCOT and new CEO asked us what we wanted –  we said change.  

Having volunteered within various roles throughout my 18 years as a member, my frustration was always hitting barriers and a reluctance to modernism.  My feedback was I want you to be more open, more engaging with members looking after their needs and embracing their ideas.  I want you to be a voice to fight for rights of those we deliver a service for, and for those that work in this field.  I want to feel heard, feel involved and part of something and I want others to feel that too – this for me is most reflected in the new values with; 

‘We Elevate
We lift up and support others to be and do their best.
We are accessible and collaborative.
We are united and move forward together, even if we sometimes disagree.’
rcot.co.uk our-values

‘Even if we sometimes disagree’  or in the words of Jo Cox MP “We are far more united and have far more in common with each other than things that divide us.” https://wearethecity.com/inspirational-quotes-jo-cox-member-parliament/

Thoughts Everyone wants change but our expectations will be based first on our experiences and our values, the skill is to put those to one side at some point during the process. A skill perhaps well practise within the occupational therapy profession?

Criticism is second nature, because nothing will be exactly how you as an individual envisioned it, that perhaps is the point of collaboration?  Change is scary, even when we want it.  The task of an organisation is to take on board what people have said, and find a balance, but at some point listening needs to turn to action, or we would always be listening and not doing.  As OT’s are we not fans of ‘doing’?

When seeing the logo ‘but I love the phoenix, it’s part of our history, it represents raising from the ashes’. 

Feelings I am upset I never said get ride of the phoenix, that’s part of my identity!    

Thoughts – Why is part of my identity what are the facts?

Action – Looked up definitions of Phoenix in a dictionary in this case Collins English Dictionary on line Collins English Dictionary. Collins English Dictionary. Copyright © HarperCollins Publishers  Link here https://www.collinsdictionary.com/dictionary/english/phoenix

New Logo – rights to download and use as a member https://www.rcot.co.uk/node/1033

In summery – with highlight words to consider.

Phoenix

  •  A phoenix is an imaginary bird which, according to ancient stories, burns itself to ashes every five hundred years and is then born again.
  • If you describe someone or something as a phoenix, you mean that they return again after seeming to disappear or be destroyed. [literary] Out of the ashes of the economic shambles, a phoenix of recovery can arise.
  • A legendary Arabian bird said to set fire to itself and rise anew from the ashes every 500 years
  • A person or thing of surpassing beauty or quality
  • A city in central Arizona, capital city of the state, on the Salt River
  • Egyptian Mythology a beautiful, lone bird which lives in the Arabian desert for 500 or 600 years and then sets itself on fire, rising renewed from the ashes to start another long life: a symbol of immortality
  • Word forms: Latin genitive Phoenicis a mythical bird of , and to rise from its ashes in the freshness of youth and live through another cycle of years: often an emblem of immortality or of reborn idealism or home.
  •  a person or thing of peerless beauty or excellence; paragon
  • a person or thing that has become renewed or restored after suffering calamity or apparent annihilation

Thought – I wonder is there is an ism of Phoenix? 

Action – found definition – Phoenixism in British English NOUN business

‘The process of making a business insolvent in order to evade paying debts and then setting the business up again under a new name’ Collins English Dictionary. Copyright © HarperCollins Publishers

Thought  – ‘But lots of health professions use the phoenix’, 

Action  Googled ‘Health symbols and Phoenix’ (see below image)

Observed – Links to websites with words like Rebirth, Beauty, Gives Health, Holistic.  

Thought  –  Is the idea of using something that is reborn for ashes a good symbol to represent health professions?  Or is this another example of the healthy/able not understanding the complexities of being ill/disabled?  

Thought – Is this Ablism?  ‘discrimination in favour of able-bodied people’  

Action – reviewing the words used in definitions of a phoenix and its association with health care, and how they could be interrupted.  

  • The Phoenix sets itself on fire – Blame? 
  • Described as imaginary – Not being believed? 
  • Returning after being destroyed, missing – disability is destroying, there are not positives. (context is important here)
  • Beauty and Quality – Valuing being perfect and getting back to before rather that content and fulfilled with what is reality now. 
  • Lone bird –  Alone
  • Renewed life, that is fresh, Restored – All words challenged in modern recovery literature. 
  • Insolvent, Evade paying debts, Setting up again under a new name – deception?

Thought Occupational Therapy for me is about working with the person to find, their beauty, their strength, their values, living their life their way, despite the complexities of ill health and disabilities.   

Conclusion the notion of the ‘phoenix’ despite my love for it, formed from a simple understanding rather that the complexities of real life –  it’s time to let go. 

However if the green had gone that would be another story!!!  

Rachel 

Since writing this blog it has had a lot of comments, mainly on twitter, some questioning why RCOT made the decision to move away from the Phoenix in its brand, having looked further into it I found some information on the RCOT history page

The Phoenix

Embodying the principle of regeneration, the Phoenix has been used as a badge for occupational therapists since the 1930s.

However, research showed that while the Phoenix was a symbol of pride for some RCOT members, it wasn’t fully understood or recognised by all members or external audiences. We realised that our brand needed to focus on what matters most – the positive outcomes we achieve for the people we work with.

Our brand retains this spirit of regeneration, but it’s now rooted in the challenges we help people overcome. Most importantly, it’s more accessible to people from all backgrounds and walks of life.https://www.rcot.co.uk/about-us/our-history

References 

https://www.collinsdictionary.com/dictionary/english/phoenix

https://www.collinsdictionary.com/dictionary/english/phoenixism

https://www.rcot.co.uk/news/stepping-occupational-therapy