If disabilities came in the form of a bingo card, I'd be filling out the fullhouse. But are they necessarily bad for you, as the word "DISability" suggests? I don't think so. As some followers may have noticed I recently finished a series of short videos about three of the disabilites that I consider to be key to my makeup as a human being. This will go into a bit more detail about what I mention in those videos, think of this blog as a directors cut of my July Disability Pride Month content. Let's get into it!
Autism
Neurodivergent disabilities have become especially well known in the 21st Century. But Autism is actually just one part of the Neurodivergent Family, along with dyslexia, dyspraxia and ADHD. The term Neurodivergent describes people whose differences affect how their brain works.
Autisitc Spectrum Disorder (ASD) to give it its legal name, is diagnosed by how people interact, learn and behave. My diagnosis was classed as “mild”, but historically it’s difficult to get a diagnosis, and even more difficult to pinpoint what traits represent your diagnosis. In this sense, I was incredibly lucky to get an autism diagnosis so early at 1 1/2 years old; to the extent where it legally helped me through the whole UK education system; even if it didn't really register with me personally until I was 11 or 12. As I was able to get an EHCP, special exceptions had to be legally provided to help in my education. In my case, this meant I had to go to The Abbey School in Faversham; because my EHCP let me into there specialist Autism Unit. "The Unit" as it came to be known by the pupils and TAs that walked around and supervised us was a safe space away from the mainstream school. The idea of "The Unit" was that it was your home in the school. In Year 7 you would've learnt English, Maths, Social Skills and other lessons not requiring mainstream resoruces, and slowly be integrated into Mainstream classrooms. So in Year 7 you would've been in Mainstream for Science, then in Year 8 you would be in Mainstream for Food Tech, Resistant Materials etc. and it would gradually build year on year. It was a good system. It still allowed you to be social with mainstream children and have a comfort blanket to fall back on as well.
Sadly what was once a proud USP of the school no longer provides that sort of service in house. Instead stating on their website they employ agencies to help neurodiverse children. In contrast to my story as well, a friend from my university received a diagnosis for his autism in 2018; when he was 24 years old. Meaning he's missed out on the sort of experiences I've had throughout my childhood as he could not be legally entitled to help in his education in the same way I was.
Along with this fact, the study found that "Across the time-period, the rate of new diagnoses in children aged 0–4 years was 1 in 750" between 2000-2018, whereas my friend's diagnosis age is much more common nowadays than mine. This can be seen as a major contributing factor as to why everyone’s experience with Autism is different growing up.
My experience with ASD is that I get overstimulated with sound, meaning I’d be wearing headphones on a train or when I’m out and about. Does it mean I hate sound? No! When I'm doing things like going to Harlequins matches with my Dad, going to concerts or just working I'm normally ok because I know psychologically what I'm preparing for so I generally feel a but more lose and free about it. For me It’s more about overstimulation in social situations like going to a wedding with people you predominantly don't know, a drink with mates, or networking parties, where I’m trying to listen intently to another person and the purpose of the event is basically to talk to other people. It’s like my ears tune into the background noise at a higher level. This video explains it best for me.
Secondly I can sometimes be very single minded, sometimes able to see the wider picture. I describe it with the idea of changing lenses. I can go to a 12mm to get a wide angle perspective, or to a 120mm angle to have an intense focus on a part of a perspective; often I struggle to find a 24mm or 50mm to get the best of both worlds. It can change depends on my emotion and stress. It is beneficial though as I’ll pick up on different ideas or angles that others might not see.
If I’m on set that’s incredibly easy because you’re immersed in the environment, but in a blank office that focus runs in all different directions with me in the middle; the problem then becomes focusing on the things I want to focus on. This can lead me to prioritise the wrong things. It’s like not being able to separate the chicken from the egg let alone know what part came before the other. Often if I'm not on set, or in a place of work, I'll struggle to start on anything; which leads to doing nothing and generally just listening to music in my room. It's relaxing but very guilt inducing. Especially when I had periods of writing block with my MA a couple of years ago; and was practically confined to writing it in my bedroom because all the resources I needed were online, and I couldn't go out anywhere because I was a protected person due to my conditions.
Thirdly, it means I can be incredibly obsessive. As you may spot I wear my inspirations and hobbies on my sleeve, but when I was younger this could lead to trouble. I conveniently don't remember it, but when I was young and we used to fly abroad on holiday I would break down if the gate we had to board on was different to the one that was on the ticket. In that sense the obsession I had with knowing where I had to be wouldnt make me very flexible when the plan... wasnt going to plan. In that sense my parents worked hard at that, which means now I might still struggle if changes happen but at least I can brush it off and not let it ruin my day. In other senses though its been helpful to me when I work in environments Im incredibly interested in like set environments or camera rental houses, as my standards are higher of myself which I feel leads to better productivity.
Does it make me different? By science? Yes because the condition declares my brain is wired differently, as opposed to the normal way a brain should be wired. It's just a term to say Neurodivergents have a brain that works differently from the average brain of a "neurotypical" person (Cleaveland Clinic, 2024). Does it make me disabled? By societal terms? Yes, because I don't understand things in the same way. SO might ask for things like extra processing time etc. Do I think so personally? No, because its how ive always seen the world, and have just had to adapt to that.
Micropthalmia Optic-Nerve Hyper Displaysia
Confused? Let's Break it Up
Micropthalmia is a rare developmental disorder of the eye, where the eye doesn’t develop in pregnancy. The cause of it is complicated, but epidemology has typically related it to other conditions relating to the optic nerve. In some instances collaboma (something I have as well but never had to worry about in that eye) but in my case it’s related to optic nerve hyperdisplaysia. Hyper displaysia is a term used to describe an incomplete development or underdevelopment of an organ or tissue.
Optic Nerve hyper displaysia therefore refers to the underdevelopment or incomplete development of the optic nerve in my left eye. Because of this I've been treat in Great Ormond Street and Morfields eye hopsitals. So became accustomed to London commuting from a very young age. In plain English, I was born with no optic nerve in my left eye, so have been blind in my left eye from birth. As such I’ve always been someone who’s seen the world in 50millimetre rather than 24millimetre. In this sense I feel it really contributes to the idea of macro focus that I talked about with Autism. And of course in trying to be a Camera Trainee, which generally involves seeing pictures and working with cameras, it can be seen as a hurdle. In my case I see it as a superpower, as my power to fixate is amplified.
Does it make me different? By science, yes. Only a handful of people have had this condition; to the extent where population studies on it are incredibly rare to come across. In fact the latest epidemiology facts relating to Micropthalmia (how often diseases occur in different groups of people and why) say it affects 3-12% of Blind children. That fact was first published in 2007 and has been used by different papers since; as recent as 2018. However, the research into conditions like this is constant, and a charity who supported me and my family especially when I was younger was MACS; focusing on Microphthalmia, Anophthalmia & Coloboma Support. If you want to learn more I couldn't recommend the charity enough, and they are contirbuting signficant resources and resarch in this space. You can find them here
Does it make me disabled By societal terms? This is a grey area admittedly. Because I have 20/20 vision in my good eye, I'm not declared as partially sighted because I need to have bad vision in both eyes to be deemed as partially sighted or visually impaired. The definition is based on either the idea that gradual sightloss occurs with age, or that people arent born with good sight in the first place, so it is complicated to find the middle ground in some respects. Do I think so personally? no, but I used to think it did. In primary school I used to wear a prosthetic eyeshell, which was hand painted by doctors in Moorfields eye hospital and was mouled to my blind eye. It eventually became too much of an annoyance for me to really care with. Youd have to take the shell out after school, by either running your finger underneath the eye to pop it out, or use a mini plunger thing to suction onto it and remove it safely. Also I loved explaining my condition in school, as to be honest it was still hard to miss. Unfortunately there’d be those who think it’s a laugh to use it against you; you can imagine how many times other kids woud take your things and not tell you, especially when your dominant writing hand is also your left hand. As the years have progressed though I’ve loved the idea of monocular vision, and how allows me to focus on things more intensely. Yes it means I struggle to look at myself in the mirror sometimes, but as Ive grown Ive found it gives me unique strengths as most disabilities do.
Neuro-endocrine Paraganglioma
“The neuroendocrine system is made up of nerves and gland cells. It makes hormones and releases them into the bloodstream. Neuro means nerve and endocrine refers to the cells of the endocrine system. The endocrine system is a network of glands and organs in the body that make hormones.”-Cancer research UK.
A Neuro-endocrine tumour (NET) develops when changes happen in the neuroendocrine cells.
“A Paraganglioma forms near certain blood vessels and nerves outside of the adrenal glands. The adrenal glands are important for making hormones that control many functions in the body.”- National Cancer Institute.
In my case that resulted in a Paraganglioma. Which formed in the pelvic region, and the hormones it generates affect my blood pressure. I’ve lived with and managed the condition for 12 years. When surgery failed in 2012, it was managed in different ways. Symptom management is simple, I take blood pressure medication in the morning, mid afternoon and at night. The management of the tumour is more challenging. I had isotope radiotherapy in 2013, affecting my first year of GCSEs, and a different type of isotope radiotherapy in 2015, affecting my first year of A Levels. To make sure I didn't have to repeat either year, because of the time in education I lost, extracurricular work was neccessary. Because Isotope Radiotherapy is radioactive, I couldn't just do the treatment and then go straight back into school. Even getting out of the hospital from the treament was like a military escort operation. While my radioactivity wouldve gone down enough to be with adults, hence why I was allowed to leave, it wasn't low enough to be around kids my age at this point or pregnant women. The waiting time after getting home would normally be a week, so that week would be spent catching up with the curriculum. So while I was at home feeling groggy and stir-crazy, I'd be doing different core subjects, Maths, English and Science etc., along business studies assignments I might've missed as well. They all had to be done, so in a way it was quite a free way to learn; as you could do them in any order you wanted as long as they got done by the deadline. It was the same process in 2015, but A Levels were harder to catch up on.
And if I'm being wholly honest, I absolutely wasn't a face if misery in this time either. In fact some of the best experiences came because of my NET, in 2013 Starlight came in contact to give me a wish; resulting in me and my family getting to go to the 2013 British Grand Prix at Silverstone. Additionally the year after in 2014, I missed a GCSE History exam to go to the 2014 Monaco Grand Prix; Starlights actual designated race in the F1 Calender. Which culminated in the best moment of my life, meeting Lewis Hamilton. So I absolutly cannot say it was all doom and gloom, but then again it wouldve been nice to have done that without a little ticky thing in me.
Anyway, this treatment worked for a while. It kept it quiet while I was at Canterbury Christ Church University. I completed an undergrad in Film, Radio and TV with a first, followed by an MA Research degree on how technology affected Film journalism, production and distribution. I had fun shooting films, studying films and just being academic. But in 2022 I felt nerve pains down the bottom of my back, to the point where they couldnt be ignored. After scans it showed my NET had begun to encroach on the sysiatic nerves that control your legs. So I went through intensive Beam radiotherapy for 8 weeks in June/July; which left me in a wheelchair with pain. I wasn't in the best spirits and wouldn't wish it on anyone. By the end I was on a knife edge with my emotions. I grinned and bared it though because the treatment worked, on that area (There are still lymphnodes, strands and offshoots, around the body that this treatment didn't affect)
Currently I’m on the tablet chemotherapy temozolomide to combat the whole spread. It was scary to start with, because I really didn't fancy going back into treatment so soon after Radiotherapy and also because all anyone has seen of Chemotherapy to be fair is a grim, hairless existence thanks to Film and TV media. My form of chemo couldn't be further from the form you see in the media. Every month I'll have a blood test the week before my treatment course. A Nurse led review of those Bloods on the Friday. Then the course of Temo (as I call it) for one week, then repeat the process next month. It gives you roughly two weeks of non-hosptial stuff lets say, but its all fiarly easy to work around. During the Temo I might be a bit tired or sluggish somedays but its par for the course. But to be honest I’ve felt the best in myself since mine has started, and recent appointments show the treatment is working so things can only get better. Additionally I still have hair and everything else so I'm only balding at the natural rate.
Does it make me different by science? Yes, the tumour is caused by the gene defect SDHB. Studies show this gene defect is typically linked to NETs like mine, as well as to the more aggressive variant neuro-blastoma. Check out the AMEND (Association for Multiple Endocrine Neoplasia Disorders) charity to learn more, its one of their specialist subjects, they offer a wide range of support and you'd be surpised by what you might discover. Find them here
Does it make me disabled By societal terms? Yes, as “someone with a progressive condition is considered by law to have a disability as soon as it starts to have an effect on their normal day-to-day activities” its considered a disability by UK law. Do I think so personally? Yes. Unlike Autism and Micropthalmia it doesn’t yield a mental positive. While its not something that affects my day to day life, and without doubti ts given me some of my best days, I view it as a disability because I’d be better off without it. But what will make it easier to cope with is how Im treated by society.
Conclusion
Disability only matters if it affects your day to day life negatively, this is my personal perspective on what Disability is. No matter the label you think it to be though, how society treats you matters. So be equitable, be fair and be understanding. Look at the Social model of disability, and particularly the idea of equity over equality, and learn from it. If you’ve read this far, I hope you'll make an effort to understand others, their needs and what can be equitably done to help. Whether its visible or invisible, everyone deserves to start from the same point in life. So I'll leave you with this photo as to what the social model means. All the best guys.
Acknowledgements
This is a new direction for me, so want to give a quick thanks to the people encouraging me to do. Being part of the Sara Putts Associates scheme is encouraging me to be more open than ever about things like this, I'd like to thank them and the #AgentsforChange campaign that they help to run. Additionally they've introduced me to the fantastic Jess Mabel Jones, an Access Coordinator who's almost as bright as the sun; and who I instantly got on with as a fellow autistic person. Speaking of autistic inspirations, a massive shoutout is also due to Sara Leigh from Inclusivity Films and Cinematographer Tom Watts. Finally, Editor and Instagram legend Bella Roberts for just being an inspiration and for being so open with her disabilities. All of these people are encouraging me to be so open with mine.
References
The Lancet Regional Health - Europe 2023;29: 100626
Published Online 3 April 2023 https://doi.org/10. 1016/j.lanepe.2023. 100626 https://www.thelancet.com/pdfs/journals/lanepe/PIIS2666-7762(23)00045-5.pdf (Accessed 1st August 2024)
Neurodivgent: What is it, Symtoms and Types. Published by Cleaveland Clinic (2024):
https://my.clevelandclinic.org/health/symptoms/23154-neurodivergent (Accessed 1st August 2024)
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