For those of you unfamiliar with my blog, I’m an occupational therapist, as an occupational therapist I’m interested in how we engage in everyday occupations,by occupations we mean everything you need to, want to or have to do, from waking up to going back to sleep again.
I often reflect in these blogs on how my disability, dyslexia and/or my environment, impacts on how I do the things I need, want and have to do.
I came to the festival with my partner Anthony,it was a last minute decision, which is not like me at all.I love to plan,it makes me feel secure,but I was intrigued after listening to the Standard Issue podcast, interviewing women that would be preforming here.We already had plans for a family holiday to the Isle of Arran, so decided, to set off a day early and go via the festival.
Getting round Edinburgh itself was a bit of a nightmare. It has cobbled streetsandlots of hills,but with some online research, a few tweets and emails to venues clarifying things and the use of google maps to work out distances we would need to walk,it was manageable.Without modern technology the occupation of planning would have been impossible, and that would have put me off coming.(I’m great at avoiding what I don’t understand, can’t figure out for myself, or feel too stupid or uncomfortable to ask about).
On a whole I felt the festival caters well for those with access needs. Although I found the web site overwhelming and difficult to navigate, when I spoke to a human on the phone,they were so helpful, explaining how accessible venues were.
Once we got to the festival we were impressed by staff attitudes. They went out of their way to accommodate my needs,providing chairs whist queuing, and making sure I had seats in the venues that were comfortable and with room to stretch my leg out. This was honestly refreshing, and not my usual experience.
So what did we ‘do’? The anxiety that drives me, created a schedule, which I’m pleased to report we stuck to.
We got up and left the house at ridiculous o’clock in the morning making the 3 hour driveand arriving just after 10am (a few mins later than planned) at the Grayson Perry exhibition : Julie Cope’s Grand Tour.Now when booking this my dyslexic brain was confused by the title, and the fact that the website said it started at 10am.Was there going to be a grand tour? Did we need to be there at 10 or would it be like a normal art exhibition and you just rocked up and went in? A few tweets clarify that it was not a tour, and that we could come between 10am and 5pm. I still felt the needs for us to be there for 10am as my brain worries I might have misunderstood. (I’m a worrier)
The exhibition of beautiful tapestries displayed the life of a character named Julie Cope.There was lots of written narrative to go along with each piece, but if I’m honest I only pretended to read it – you know to look intellectual.Instead I chose to make up my own narrative from each tapestry.The vibrancy, and attention to detail was breath-taking.
For me Julie was full of potential but the social constraints that are put on women, including what they are expected to do, meant at times she found it hard to muster the energy to fight but at other times she found the strength to strive and do the exciting things like travel.
As I write this blog I highlight the words ‘Julie Cope’s’, to get Siri to read them to check the word reads Cope’s rather than Coope’s.I now think perhaps by giving Julie this surname,Grayson was making a points about a women’s role in society, are we just expected to cope?Or is it a strength of women kind,we have learnt to cope? (The occupation of coping, existing and living are perhaps ideas to explore another time)
As an occupational therapist I often use engagement in the arts as my assessment and or treatment,the process of how someone does something (the doing part) is the interesting part.I have watched a number of Grayson Perry documentaries, he also appears interested in the process of making art,maybe that’s why I find his work so intriguing, as it somehow comes through in the finished product.
We then took a break from the festival and caught up my good friend, fellow member of theOTalk* team Kelly and her 11 month old,Isla, for lunch.
Our first comedy act was Laura Lexx: with her show Knee Jerk. We thoroughly enjoyed her energy on stage, she reflected on her own experience of cognitive behavioural therapy (CBT) and how it had helped her to break down and understand her anxieties, with sharp observations and hilarious consequences.
One of the ideas she explored was how as young children we are taught how important we are, simply by the sports they are encouraged to play,boys are given the universal recognisable game of football, that has a few simple rules, and can lead to a career of wealth and fame. Where as girls are taught the game of netball, which has more complex rules that restrict your movement around the court, and can lead to not being as valued as a sports person, and mostly likely only ever a part time low waged career.
Next up was Sofie Hagen: with her show The Bumswing, a thoughtful and astutely written piece of stand up,she talked about how the British and Danish cultures differ,particularly when it comes to communicating with each other. She explores her memories and tenancy to remember only the things she wants to believe, told some funny anecdotes,of growing up with false memories that shaped her future. What I loved the most was she really challenged the audience at times, making some excellent points about positive body image.
We finished the night off with the amazing Rosie Jones and her show Backward. She literally took us on an emotional rollercoaster.
She had the room filled with laughter, as she explored her lived experience, of being a disabled gay woman in comedy.Until a poignant moment, where it all went dark, as Rosie detailed a story of reading a text message over the shoulder of a stranger, that described Rosie with words so derogative that I can’t quite bring myself to repeat them here,I was in tears.
She made some excellent points about being prejudged on her ability. Then brought the room back to laughter again, with her sharp wit.
Rosie is everything a disabled woman is not allowed to be, clever, witty, rude and lewd,definitely not an ‘inspiration’ but a fucking genius (and the daddy) I can’t recommend her enough you owe it to humanity to see this woman’s standup.
What stood out for me as I watched and listen to these three women was how they all touched on occupational deprivation**
That it was the attitudes of others, not their mental health problems or disability or bring a women, that created the barriers to engaging in the occupations they wanted.
How we and others perceive us will impact on what occupations we choose to engage in. Like for me growing up being a child with a disability,at school they struggled to accommodate my needs and often I was left out of playing sports; you know in case they broke me.
We both had the most amazing day and will definitely be coming again. Thank you Edinburgh Fringe Festival, for ensuring my engagement is this occupation was not a deprived one.
*OTalk is a weekly twitter chat about everything occupational therapy related that Kelly myself and 5 other occupational therapist organise. https://otalk.co.uk/about-2/
**Occupational deprivation is a relatively new term which describes a state in which people are precluded from opportunities to engage in occupations of meaning due to factors outside their control.
20th December 2015 will be a date I’ll remember for the rest of my life. Two years on I’m now at the stage, where I can reflect objectively on the experiences. Those of you that are regular readers on my blog will know this is my 5th post on the subject.
My thoughts and feelings about the experiences have fluctuated, often due to the treatment I received when I initially broke the leg, and the on going pain I have been in, but I’m also thankful for the experience. It has made me re evaluate, what I want from life. Two years on I’m in a better place than I was even before I fell down those pesky stairs.
Following on from the last blog — loving the dead leg again, where I talked a lot about the pain I was in on a daily basis, I have had a further operation which removed scar tissue from my ankle. This has made a difference, I still have pain, but there are some days where I’m pain free, and I can walk a little longer and tolerate standing up in the morning meeting at work. Pain will always be a part of my life, I’m struggling to remember what my pain was like before, so I can’t really compare it. But my weekends are no longer waisted resting in bed, I have enough energy to do something. Those that know me well will know during the worst times I would just say I want the leg chopping off, and joked about chain saws, and what sort of blade I wanted to replace my leg.
I have a lot of people to thank, my family, friends readers of this blog who have often sent messages of support, and of course the OTalk* girls who have all been a consistent support. I know I have not always been easy to get on with, at times shutting people out.
In my revaluation I looked at want I wanted from life, and what I had already achieved and had. The career I love, a home, close friends and family, but no one to share this with. With the support of The Otalk girls I ventured into the world of online dating, something I would advocate, if you have ever thought about it, it’s an odd world and you need to be careful. I had some weird conversations and dates, which created much amusement within the Otalk WhatsApp group.
Five months again I found someone very special, who shares my hopes and dreams. He is caring, supportive and has quickly become a firm fixture in my life.
So without falling down the stairs I don’t think I would be in the place I am right now. I hope to draw a line under this experience and move on to a new chapter. I have recently become an Auntie for the first time and although I have fears about how my physical health impacts on my ability to help care for her, I’m learning every day.
If I have learnt anything its that Life is good – live it, you can always work around the barriers life throws at you.
Thank you for reading, Merry Christmas and Happy new year.
*OTalk is a weekly twitter chat planned and organised by myself and 6 other occupational therapist across the UK and Ireland. https://otalk.co.uk/about-2/
The World Federation of Occupational Therapist (WFOT) define Occupational therapy as ‘a client-centred health profession concerned with promoting health and well being through occupation. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life. Occupational therapists achieve this outcome by working with people and communities to enhance their ability to engage in the occupations they want to, need to, or are expected to do, or by modifying the occupation or the environment to better support their occupational engagement.’ (WFOT 2012)
“Occupation” is also defined as
‘everyday activities that people do as individuals, in families and with communities to occupy time and bring meaning and purpose to life. Occupations include things people need to, want to and are expected to do.’
The British Association of Occupational Therapists and College of Occupational Therapists (BAOT/COT) are asking members to engaging in OT week – (2nd – 8th of November 2015) and promote the work and role of an occupational therapist.
This year, I thought I would use social media to promote occupational therapy as this is an occupation I enjoy. I will be posting on my Twitter, and Instagram accounts, as well has updating this blog on a daily basis.
I hope to show ‘a week in the life of an Occupational Therapist with a disability,’ to both demonstrate what my job entails and how I as a person with a disability engage in the occupations I want to, need to, or are expected to do, explaining any modifying of the occupation or the environment that supports my occupational engagement.
Occupational therapist think of occupations in three area, self care, productive and leisure. I will share photos and posts of occupations within these three areas throughout the week. Please feel free to share, and ask questions at any time.
Day 1 Monday 2nd November
For those that are not regulars to my blog, I have a right hemiplegia/cerebral palsy diagnosis due to lack of oxygen to the brain at birth. I also have dyslexia.
This morning started like most days, with pussycat my cat waking me promptly at 7am.
I’m currently recovering from a sprained ankle meaning first thing on morning the trip out of bed to the bathroom and downstairs to feed the cat can be a painful and tricky one.
The morning is mainly self care tasks, I sorted out the washing and prepared my breakfast. Carried both back upstairs in the washing basket. I find it difficult to balance going upstairs whilst carrying something so tend to place the basket on the stairs two at a time. After my breakfast I have a quick shower, my shower has handrails and a seat.
Although my right hand is not as weak as the my right leg/foot, I still find some fine motor skills difficult like doing zips and buttons. I tend to avoid these in clothes. Typical outfit for me for work would be leggings and some sort of dress I can pull over my head, and slip on shoes. And of course wearing my I ❤️ OT badge.
Then the productivity starts. I packed up my lunch and prepared to leave the house and drive my car, which is an automatic adapted to the left accelerator, to work. (I work in acute psychiatry)
This morning I had a first year OT student start. I spent some time replying to emails from Friday. I explained the nature of the OT team to the student, before taking her to a multi-disciplinary team (MDT) meeting. Theses meetings happen daily and every patient on the ward is discussed. This was followed by a formulation meeting for a patient that is been with us for about a week now. It was agreed this patient could have leave to the occupational therapy department. I then took this patient over to the department, showed them around and gave them a copy of the timetable. The person expressed an interest in the pottery session.
I spent a little more time with the student talking them through the morning. We then joined the OT team for lunch, chatting about our weekends, comparing trick or treater experiences and I also checked my twitter feed.
In the afternoon I had some mandatory training, Basic Life Support. This included using mannequins to do CPR practice. I find it difficult to get up and off the floor so asked the tutor if the mannequin could be placed on the table in order for me to engage.
Once’s the training was over, I give the team a quick ring to check that the afternoon at gone well. I then drove home to write this blog. Which I’m dictating using Siri on my iPhone. Having dyslexia, this is often a tool I use when writing a blog or tweeting.
I’m staying at a hotel in Leeds tomorrow night so will be packing. As I’m getting the train I need to think about fitting everything into a small suitcase that I’m able to lift and manipulate on and off the train independently.
For some leisure this evening, I’m going round to one of my oldest and dearest friends house’s. The biggest challenge visiting Dominic’s house is that his living room is on the first floor. He also has a very low sofa which I find difficult getting off. His house is also a no shoe house which is fine but with the current pain I’ve got in my ankle I prefer to wear shoes for support. To combat this I’m taking my slippers, and Dominic as usual will have to help me get off the sofa.
Day 2 Tuesday 3rd November 2015
Occupational therapist are interested in enabling people with their daily routine, as mentioned in yesterdays post, my cat helps me with my morning routine by waking me everyday at 7am. However this morning I changed my routine slightly much to pussycats annoyance.
Having looked in my dairy I knew I had to get in to work early this morning to fit everything in before leaving promptly to catch a train. As i can be slow on a morning, I had prepared last night by showering, packing an over night bag, preparing my lunch and setting out my clothes for the morning.
I chose to get dressed before going down stairs to feed the cat. Getting to work 1 hour early, I spent this time catching up on emails, before a 9am supervision session with my student. A quick meeting with staff to plan the day and help set up the morning construction group, which is a new group to our timetable. This group will ofter service users the opportunity to make objects out of wood. The first few weeks is concentrated on making the shadow broads that will be used to keep a track of what equipment we have.
This was followed by the daily MDT meeting and two formulation meetings for new admissions which took me up to lunch time. After lunch I pop to my ward to introduce myself and role to a new admission, encouraging them to attend this afternoons session, and made plans to see then again on Thursday.
I then had a supervision session with one of my band 5 OT in which we discussed a person I had been working with last week, but had now moved the band 5 ward. We discussed my assessment so far, and the plan I had put in place for the OT assistant to follow.
This was then followed by a catch up with the student, who had been in the baking session this afternoon.
I left work early to meet up with my mum and catch a train to Leeds.
I’m currently the chair on the BAOT Northern and Yorkshire committee, we have been asked to present at an OT conference in Leeds tomorrow, for #OTweek15. My mum Mary Booth, is a retired occupational therapist, but is also on the regional committee as the current treasurer.
We are staying in a local hotel in which I have booked an accessible room as I find it difficult to get in and out of a bath. Booking online is alway a bit of a gamble as sometimes a hotels understanding of accessible is different from mine.
Negotiating the journey from the train to the hotel, as always has it challenges such as getting off the train in a short time frame. Then faced with an escalator, my worst fear. The motor skills such as balance and coordination to step on to moving object is not my strong point, especially with the extra demand of a suitcase. So instead it was walk against the crowds to a lift. We then waited for a taxi and I prayed for a taxi that was not too high or low to get in and out off. We got a low one!!! Getting in and out other peoples cars can be difficult as my own car is the prefect height for me, which is why I much prefer to drive at every opportunity. But having driven in Leeds before the train felt like the safer option.
For some leisure this evening we are meting up with Amy my brothers girlfriend who is currently in her 4th year of a Dietetics degree. Going somewhere new always presents itself with a level of anxiety for me. How will I get there? How far will I need walk? Most people rate a restaurant on the quality of food, for me its always about the quality of the seating. Will I be able get up for the chair without difficulty? Will there be enough leg room? Amy sent me the link to the restaurant and I didn’t look at the menu, instead I looked at the pictures of the table and chairs. In the confirmation email of our booking, it stated “some of our tables have high bar stools if this is not suitable for your party please contact us” so we had to ring to ensure we are not seated at the high tables.
Normally on Tuesday nights I would be engaging in the twitter chat #OTalk,( Otalk )which tonight is looking at how we promote OT, but I’m out for a meal. However I am planning on doing a bit of OT promotion with Amy and some of her Dietetics student friends, having packed some stickers saying I love OT for them to wear during dinner.
Day 3 Wednesday 4th November 2015
Today has been a productive one witha little bit leisure but not a lot of self care. My nights sleep was poor due to an uncomfortable bed in the hotel, waking throughout the night with back pain. As I left pussycat at home, I relied on my phone to wake me up, however my back did this for me. I decided against the shower, as it had high step up and no hand rails.
The productive part of my day was attending the first OT sessions at Leeds Teaching NHS Trust, in my role as chair of BAOT Northern and Yorkshire committee, along with Mary our treasurer and Keith our careers promotion lead.
You can see what the Leeds teaching NHS trust OT’s have been getting up to all #OTweek15 by finding them on Twitter @LTHTrust and @LTHTOT.
In brief they are running daily information stalls with a different theme each day to promote OT to both colleagues and patients. They also hosted their first ever OT sessions, which was an opportunity for OT’s across the trust to get together for some CPD and hear what each other have been getting up to. I was particularly impressed with a presentation by Claire England – Senior OT, who presented ‘Life in colour – developing an outpatient pain management group for teenagers.’ As a advocate for group work, it was great to see what Claire and her colleagues had achieved.
We then got some lunch before heading back to the train station. As we were traveling off peak the station was quieter and therefore less anxiety provoking. Although by this time I was feeling pretty tired, having done more walking than usual. I began to think about how I needed to save some energy for rest of the week.
I have plans to meet a friend tonight, go out for bonfire night tomorrow and catch a train to London with my family early Friday. However as I sit on the train with pain in my back and right leg, I realised I needed to make some sacrifices and rest my body. I decided to ask my friend to meet earlier and somewhere close to my home, and have resigned to the fact I need to miss tomorrows plans for bonfire night to conserve some energy for the weekend.
I have also connected with Jo Southall on twitter today, a student OT who runs the Facebook page ‘DisabilOT’. She is running a twitter chat tonight at 7pm #OTandME15 for OT’s and the general public to engage in. I’m hope to join in from my bed later tonight.
Day 4 Thursday 5th November 2015.
Pussycat appeared happy to be able to wake me as usual this morning, however today was one of those days I prefer to refer to as a codeine day. Being in pain it took me a little longer to get ready, meaning I did not have time to prepare some lunch.
The productivity started with supervision of the fitness instructor, followed by the daily MDT meeting. I then met with a colleague from the trust research department as I had identified some patients for her to see today as part of a research project.
This mornings groups included pottery and knit and natter, which were ran by the OT assistants. I spend some time arranging Section 17 leave (a legal requirement under the mental health act to allow a patient to leave the grounds of the hospital ) for one of the occupational therapy assistants to take a patient out on some leave this afternoon for a meal.
After lunch – my student and two of the band 5 OT’s ran a group to explore the importance of sleep, asking the group members firstly to make a mind map of things that help them sleep. Finishing the group with something practical, making lavender pouches, from lavender that was picked in the garden earlier in the week.
Once the groups had finished, the OT team meet for our daily handover and we discussed three new referrals.
I then spent some time with one of the band 5 OT’s who is new to the team and discussed a functional assessment she is planning on doing tomorrow morning. Going over which standardised assessment she might like to use and the paperwork the trust has for completing assessments.
After this we both spent time writing up notes for the patients we had seen today.
I’m on holiday from work tomorrow, and having been out off the office yesterday I had a little bit to catch up on so stayed late to answer emails. Luckily my office is on the first floor and has a large window, so I was able to enjoy a fireworks display whilst working.
Once home my mind turned to the weekend. Travelling to London with my mother, brother and his girlfriend. I began to think about what we had planned and which category of occupation the purpose of our visit might be. I decided it was self care. Unfortunately we lost my grandmother this August. She lived in London for most of her life and wished for her ashes to be spread on the field across from her old house.
Feeling quite tired I made some tea, packed my suitcase and engaged in leisure occupation of watching some television, catching up on a few things I’ve missed during the week.
Day 5 6th November 2015
Another change to the daily routine this morning, getting up at 6am, pussycat looked most confused. As mentioned yesterday I have taken a days holiday from work today. I collected my brother Dan and his girlfriend Amy on the way to the train station, where we met up with Mum.
We caught the 7.32am Grand Central train to London. On the train we chatted about our weekend plans and played a game of Self care, Productivity and Leisure. Discussing occupations we have engaged in this week and which category we felt they fitted in to. For mum washing her clothes was productivity however myself and Amy felt this was more self care. Amy spent some time spell checking this blog, I think this was more productivity for her however I like to think there was some leisure in it some where. Dan slept for most of the journey – self care?.
Occupational therapists should allow the person they are working with to define which occupations fit in to which category, as what is self care to one person could be leisure to another like getting your hair cut. For some people cooking is productivity and for others its leisure .
Amy a dietetic student then invented a game, Protein, Carbs or Fats, naming food type and getting us to chose which they belonged to.
Once in London the leisure occupations started, we ditched the luggage and ventured out. To lessen the amount of walking we decided to get on a tour bus. Even though we know the city well, Mum lived her for the first 40 years of her life, having both me and dan here, a tour bus is still a great way and easy way to see the city.
Getting to the hotel about 5pm, although we did not do to much walking my ankle was really painful, so a short rest whilst I wrote this blog, before going out for food at the first restaurant we come across. My mind is ready to enjoy a night in the city of my birth, however my body is telling me its time to rest.
Day 6 November 7th November
Just a quick post today, a woke in the hotel room this morning, (i should point out a normal week does not include two overnights in a hotel, just so happens this week is a busy one.) But i think its a good example of how the change of environment impacts on my ability to carry out a my normal morning and self care routines.
I have booked the accessible room again, this time the bed was much more comfortable although very low, a great level for someone in a wheel chair to transfer, but not so good for me to stand up from first thing in the morning. Also the bathroom was sort of accessible, with a very low bath, however still not easy for me to get in and out of so I washed at the sink and washed my hair over the bath .
We decided to take a taxi from Kings cross to my Nan’s old house in East Acton. There we meet with Nan’s old neighbour, my cousins and Dans god mother Pam. We eat cake, drank tea, reminisced, before venturing out in the rain to say good bye to Nan and scatter her ashes on the field across from her old house.
After this we chose to indulge in a spot of shopping, one of my favourite occupations, Portobello market is not far, however due to the rain we opted for Westfields shopping centre instead. However on a Saturday, it was really busy. Luckily I know this shopping centre well so could plan our route to minimise stress and walking distances.
We traveled back on the underground, you already know that escalators are my worst fear, and the one’s on London underground seen to go much faster. I’m not as scared about going up as I am about coming down, so with the aid of transport for London’s guild to step free underground https://tfl.gov.uk/transport-accessibility/wheelchair-access-and-avoiding-stairs and my memory I could work out a route that did not including going down any escalators, however at times this does mean walking further. To manage going an escalator I need to have free hands and someoneI trust in front of me.
Feeling pretty tired on the walk back to the hotel, we stopped for fish and chips to eat in the room. Dan and Amy had arranged meet some friends in Soho, again i really wanted to go, but needed to listen my body and rest.Back at the hotel I had some time to review twitter and see what people were tweeting about today. Jennifer Creek has challenged my use of self care, productivity and leisure as a way to explain categorises of occupations, I love to be challenged and yes she is very right she says, categorisation of occupations are artificial – only appropriate or useful for limited professional purposes.
Day 7 8th November 2015
I had a slow morning as our train was not till 9.48am and the hotel was directly opposite the station. We were leaving mum behind has she has business in London.
At the station we had some slight drama, as we arrived and sat down to wait for our train, next to us were three unattended supermarket shopping bags. I asked the people around if they belonged to anyone but no one claimed them. I rushed to find a member of staff to inform and showed them the bags. By this time Dan and Amy had been watching the bags for over five mins, when a woman walked in from outside and explained she could not get signal on the on her phone so had gone outside. Slightly frustrated about the lack of thinking this women portrayed, we walked to catch the train.
I tried to be productive during the journey home, spending some time making a storify of #OTweek15 however the wifi was not great.
Once back up north, I popped to my mums to refill her cat feeders before heading home. I had planned to catch up on a some work, but instead got a shower, my first opportunity to really feel clean since Friday. I then put on my PJ’s before watching some telly, finishing this blog and the storify of the week.
It all starts again tomorrow.
I’d be interested to hear what you thought of this weeks blog. Please leave any comments below, and thanks for reading, I have enjoyed writing it.