Hi, my name is Adrian Martin, Clerical Officer in Cardiology and I’ve been asked to do a short video/story for the Festival of Inclusion
I was diagnosed with Autism about 2 years ago, which was a life changing event for me. That doesn’t mean to say that I’ve just got Autism…I’ve always had it…. it’s just that I thought my disabilities were something else. When you have difficulties with the world around you, and people have difficulties with you, and you don’t know why? then you either blame the world, or blame yourself or both.
But…. I’m not here to give a tutorial on what Autism is because that’s not appropriate here, and there are plenty of other sources that would better explain it than me anyway. I do ask though, please don’t use the film Rainman and Dustin Hoffman’s portrayal of an Autistic man as your reference point as to what an Autistic person looks and behaves like. The reality is much more diverse. One of your close colleagues may have Autism and you would never know it, unless they disclosed it to you.
In fact, most of my colleagues don’t know that I am Autistic so this video/story will be a surprise to them……or perhaps not.
Everybody is the same to the extent that we have shared experiences, shared values, things in common, and similar cultural experiences and so on. These are what you may call ‘fundamentals’. However, there is one fundamental you can never have, and that is you knowing what it’s like to be Autistic. More than that though, what it’s like being an Autistic in a place of work where the neurodiverse, such as myself, are marginalised and have to work twice as hard to accommodate the expectations and demands placed on us in a neurotypical environment. I don’t want to have Autism; it is something I cannot change. I cannot learn it away, I’m not Autistic one day and another day I’m not. It’s not an illness….I can’t get ‘better’ in that conventional meaning.
Of course everybody is different. Difference is what you mean when you say the word ‘I’. We all have a self-identity whether we have a disability or not. What makes it salient, in this context, is that one of my differences is that I have a disability.
My experience of the world around me is profoundly different than that of a Neurotypical person. In a world engineered for Neurotypicals those of us with Autism are at a distinct disadvantage. There are very real tangible and intangible barriers that exist, that prevent access to aspects of life such as, relationships, experiences and opportunities that most other people take for granted, and are of little consequence to them.
For example, a simple discussion between colleagues, or friends, participation in a meeting, taking phone calls, and learning new systems of work are all disposable events that are of little or no challenge to most people. For an Autistic person, any or all of these things may become overwhelming in a way that would make me sound like a crazy person were I to forge and hammer these experiences into words.
Autism is invisible, and generally speaking we are really good at hiding it. This is called ‘Masking’, and we spend our whole lifetime doing it.
We have to… so that we are employable, fit in with others, and, at work, to not be regarded by our colleagues as stupid, weird or antisocial.
Should we behave in a different way? It still rings in my ears from when a line manager once told me’, “Well…we are all on the autistic spectrum somewhere aren’t we?”.
Nothing can be further from the truth, you either have autism or you don’t.
There is a good valid reason why so few Autistics are in work, and also why so few of us actually disclose our Autism and the difficulties that we have. Stigma is one of them, but also not being very good at sticking up for ourselves is another. There are just too many obstacles to change things for the better.
We are stigmatised, perceived as a problem, troublemakers, become unemployable and so on. Sometimes if you raise a problem then you are seen as the problem itself. Worst still, my experiences of being bullied in the Trust will last with me forever.
I had thought, back in 2008 when I joined the NHS that it would be an organisation that would look after me, a kind of workplace safe haven. That may very well be the case for a lot of people, but unfortunately not for me. There’s not much positive I can pick from it if I’m honest. Some of my experiences have been crushing, even soul destroying. Perhaps I’ve just been unlucky, but I don’t really think so and so that’s the uncomfortable and brutal truth.
In making this video/story I didn’t want to compromise on the reality of this uncomfortable truth. There are those that see difference and vulnerability as weakness and it brings out the very worst in them. The urge to disempower, remove choices, shout at, bully, make life difficult for and overall treat differently, becomes a temptation too difficult to resist.
Some of those in positions of authority don’t even know they are doing it because, left unchallenged, it becomes accepted and then over the course of time…. normalised. It becomes our normal working culture, and no one dare challenge it because that would be outside the consensus of social accepted norms.
I’m convinced that if people see things around them all of the time, then they stop seeing them. At the very least they turn a blind eye to it, because if it’s not happening to them then it’s someone else’s problem.
I imagine these kinds of behavioural transactions transfer very well not just within the experiences of Autistics, like myself, but also for other minority groups in the Trust, and are recognised, and within the range of your experiences too.
However, to close, I want to leave on a positive. I’m hoping things are going to get better.
Since my diagnosis of Autism I have tried less to be what others want me to be, and have tried to be more myself.
I’m still trying but it’s a difficult and challenging thing to do in the workplace. It’s a neurological disability which makes it invisible and impossible for others to see that I have a disability at all.
This makes it good for masking, but when it comes to being open and honest about it I usually end up being judged, scrutinised and largely misunderstood. After all, some will think, “He doesn’t look like he has Autism”, “He doesn’t act like he has Autism”.
It’s certainly a challenge, and for me, it means accepting my own neurodiversity and stopping trying to mimic neurotypical thinking and behaviour.
Forcing tasks and demands on a neurodiverse employee that are engineered for a neurotypical employee isn’t fair at all, and employers, including ELHT have a lot of work to do before it is.
It also means disclosure of my disability, visits to Occy Health, meetings with managers, and so on…but all are necessary steps to take for change.
Change will not happen by doing nothing, and for me I had reached a milestone on my life journey that I had to force change anyway, no matter what the outcome, good or bad. For others, who might be reading or watching this video, who are Autistic and have hidden it for years and been afraid to disclose, I would say that you can only put it off for so long before it catches up with you.
It’s a scary thing to disclose to your colleagues and managers that you have a neurodiverse disability. Experience and knowledge will say that it doesn’t end well.
No doubt, like me, some may feel that you will be sticking your neck out too far, and fear the risk of getting into trouble, be stigmatised or losing your job.
However, there are those now in the Trust that will support you. The support and understanding that I’ve got from Occy Health, Joanne in HR, Nicola in Staff Guardianship, Joanne my Union Rep, and my managers in my Department have been a lifeline to me.
Yes, historically, some people have genuinely made my life worse, but now, after disclosure and asking for support, some people have made my life better.
I’m ending by just urging any Neurodiverse people in the Trust to get the support they need.
It’s only in bigger numbers coming forward that any meaningful change will happen; I can’t do it on my own.
There is no shame in asking for help and you aren’t letting anybody down. If you are made to feel that way, then it is them that is letting you down, and not the other way around.
My Battle with Dyslexia
by Joanne Wiig
Community Staff Nurse
As the British Dyslexic Association puts it:
"Don't expect them to remember it off the top of their head, as many people with dyslexia have difficulty storing and processing information in this way."
Before I knew about dyslexia I used to dread the times when my teachers said we had to do some writing. Everyone else would write sentences, paragraphs and, as we got older, pages, but I couldn’t do it. My mind had all the ideas of what to write but it seemed my brain couldn’t tell my hand what to do. I could only write a little bit.
Sometimes teachers would tell me off for not trying hard enough and I was really sad inside because I felt that, even if I practised, it wouldn’t get any better. School work was getting harder and I felt rubbish at it. I just couldn’t do it. My teacher at the time realised that I was struggling and started to work out what might be happening, she guessed that I might have hearing impairments and sent me for a hearing test as she felt there was something wrong with me.
In the 70s there was no recognition of dyslexia; hence I was deemed to have low ability. I would be filled with dread thinking about further education as I knew something was wrong.
I only managed to tell the time at the age of 14 and I found it very difficult to work out the sequence of the hands; it was so foreign to me. I love to read but can do so very slowly. I started to develop coping mechanisms with great difficulties as I knew I had to push myself so I went to night school at Nelson and Colne College.
I never knew I had dyslexia until it was discovered at college. I had no idea that it was even a problem. I just thought I was slow, which turned out to be wrong. I kind of understood that it might be a good thing knowing that I have dyslexia, but I was scared. I didn’t know about dyslexia and didn’t know what it would mean. What treatment would I get? Would I miss loads of lessons at college? Would I be away from my friends a lot? At the same time it made me feel really happy and relieved because I wouldn’t get told off as much and would be getting more help in a separate lesson.
The teacher arranged an assessment and following a positive identification I was assessed in different ways including doing a story, reading and writing. The remarkable thing about the assessment was that it identified I had great creativity and imagination. I am naturally very artistic. I had a fab tutor who really, really understood what it was like for me. He taught me spelling in “my way” of learning and we practised handwriting in a way that made sense to me. The college had done lots of things to help me. They gave me work on coloured paper because it’s easier for me to see it than on white paper.
Through support from my tutors I passed both English Language and English Literature exams, I was chuffed to bits and this gave me amazing confidence in what I can achieve. My self-esteem and self-belief went over the roof! I was much more confident in my own ability and knew my capabilities. Prior to passing my exams, I felt like an idiot! I knew deep down I wasn't stupid, I knew it was all in my head but struggled to get it on paper. I just wanted someone to open my brain with a key. Ironically I have a high IQ and loads of soft skills.
After being made redundant, I signed up as a volunteer at Burnley General Hospital. The male charge nurse Naserelli took me under his wing; he was brilliant and gave me lots of support. He felt that I was a very caring, empathetic and compassionate individual and that I should pursue a career in the NHS. He encouraged me to apply for a post in Radiology. I applied and was successful, the feeling of euphoria kicked in. I really enjoyed working as a radiology helper, it gave me a taste of working in the health service and now I was hooked and wanted more. So I enrolled on an NVQ level 3 all my inhibitions and apprehensions now gone ready to take on the world.
I received a lot of support during my NVQ level 3 in Diagnostic Radiography. The NVQ assessor encouraged me to consider applying for nurse training. During my nurse training at UCLAN, I was assessed by an education psychologist, Alex Griffith's from Yorkshire. He gave me some really funny exercises to do, I had to look at these 2 chairs and one of them had 3 legs but I just couldn't see it because how it was positioned.
Having Irlen Syndrome prevents many people from reading effectively and efficiently. Individuals with Irlen Syndrome perceive reading material and/or their environment differently. They must constantly make adaptations or compensate for their eye problems. Individuals are often unaware of the extra energy and effort they are putting into reading and perception.
At the general knowledge questions, I was very good and Alex my tutor said I should be on mastermind. Alex said to me to think of dyslexia as a gift, so I turned it on its head. I am a social butterfly as I can talk and relate to anybody.
During my nurse training, UCLAN put flags in the form of stickers to alert the tutors to put extra in support for me, this was not the case when I was on placement and I really struggled. I encountered many problems and some people just didn't get it. One nurse said to me how come you're doing nurse training when you have dyslexia. This made me feel bad was a very prehistoric attitude as I would have expected staff in the NHS to be more understanding and supportive. The problem is people always recognise physical disabilities and these are well accommodated but not so much for cognitive disabilities which are not so well recognised or understood.
I was always afraid a manager or supervisor would hold it against me. Not much investment has been put in me as I feel I could have progressed to a band 6 quite a number of years ago. Simple adaptations to your day can make a massive difference as it boosts confidence, self-esteem and motivation.
It’s hard to describe what it’s like to have dyslexia, the best way I can describe it is like everyone has a combination to a safe and I’ve not been given the key to the combination?
Sometimes I feel like coming out of nursing, as I’ve had to accept second best. In 2013, I left the Trust and became a School Nurse working with children with complex needs. My role was to train the teachers and teaching assistants on how to give medication, etc. I had to stand up in a lecture theatre and give presentations and my knees were a pair of castanets, I was shaking like a leaf.
In 2015 I was compelled to come back to the Trust as my passion is giving care, feeding, talking to patients, doing all the old fashioned things like helping them with washing, making them look good for visiting, etc. This suits me to a tee as I am a very hand’s on person. I really enjoy my job as staff nurse in falls management.
Nursing to me is a privilege; I have seen nursing change dramatically in the last 15 years where it’s become more focused on paperwork, processes and systems. This is all well and good and I’m not knocking it as we have to move with the times although you have to be genuine as people pick up on things i.e. body language, etc.
The support of your team can make all the difference to a dyslexic person's experience at work: everything from providing information to them in the right format - no Times New Roman, please - to checking key decisions before they are made.
In the meantime though, I want all ELHT staff to know that being dyslexic is nothing to be worried about – it just means you have a different way of learning.
My Way! Is really important because it helps non-dyslexic people realise that sometimes life is just different for others. It can help dyslexic people understand more and not feel alone.
Being dyslexic also means you have something in common with some of the most famous people ever, such as Einstein, Winston Churchill, Richard Branson, Kiera Knightley, Fred Astaire, Alexander Graham Bell, Thomas Edison, Harrison Ford, Danny Glover, Whoopi Goldberg, Robin Williams, John Lennon, John F. Kennedy, George Washington, Agatha Christie, Leonardo da Vinci, Muhammad Ali, Magic Johnson, Henry Ford, F.W. Woolworth, Walt Disney and that has got to be a gift to be proud of.
Dyslexia can slow you down but not stop you from your goals. Understanding what it is can be most enlightening.
Speaking out against exclusion and marginalisation
by Joanne Mohammed
by Kate Quinn
Associate Director for Workforce & Transformation
It was not until I experienced menopausal symptoms myself that I appreciated the full extent of how symptoms can have a detrimental impact on my ability to work, relationships, energy and self-worth.
Looking back, I probably started experiencing menopausal symptoms when I was around 45, but did not recognise them at the time. To be honest I thought I was going mad. I thought it was something that happened much later on, I am now 50.
So it was a bit of a revelation to find out the average age of achieving menopause - when your periods have stopped for 12 months - is 51.
For me, the hot flushes and sleepless sweaty nights came much later and actually once these started it at least started to make sense of the years of other symptoms that I hadn’t really thought of as menopausal.
I started noticing that I lost concentration easily and that the fog in my brain made it feel like I was sat in meetings and everyone was talking another language. I started to doubt my ability to do my job and I personally started to think I had something seriously wrong with me.
Then there were the journeys in to work with a deep feeling of anxiety and panic. Sobbing all the way in to work because of the complete sense of panic for no apparent reason and then dusting myself off and deep breathing to manage the feelings so that I could at least try and present myself as capable. I felt disconnected from everything and couldn’t work out why. Loss of energy, moodiness with my husband and children and feeling like an observer rather than a participant at social events. It feels like it will never end.
It also seems that a woman’s body cruelly starts to challenge her just at the point that her children are leaving home and so there is often a double whammy of realising that your body can no longer produce children at the same time as your children no longer need you. It is just as challenging psychologically as it is physically.
All of these types of symptoms have caused many successful and capable women to give up work either because they simply couldn’t cope any more or believed themselves to be “losing their mind”.
Many women feel afraid of showing signs of menopause in the workplace. We try and shrug it off as ‘just my age’ or make light at ‘having a hot do’, but in reality there can be a lot more going on for women.
I would like women to be able to feel confident in speaking to colleagues and managers about this transitional stage of their life and to seek support where possible. Workplaces can make "very small, reasonable adjustments" to help cope with symptoms. Suggestions include giving women fans for their desks, flexible working to cope with a lack of sleep, and offering a quiet space at work to tackle poor concentration.
It can be therapeutic to tell your story or share your struggles and learn that you are not alone with issues that many of us deal with every day.
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