Hi all, Jay here. It is July the 31st as I type this, which means Disability Pride month has came to an end. If you knew it was Disability Pride Month, well done you! I unfortunately did not, and it seems to me that Disability Pride Month is probably one of the best kept secrets on the calendar, along with Disability History month which takes place in December, precisely when a lot of us are distracted with the Festive period.
So while I've got literally so few hours left of Disability Pride Month that I can count them on the one hand, I thought I would blog about what life is like for an adult with multiple disabilities, especially as the English speaking media seems to be intent on vilifying people with Autism, ADHD, depression, anxiety and other mental health conditions.
First off, I must say that my experiences with my disabilities may or may not reflect that of other people, even those who have the same cocktail of disabilities as I do. Let's take Autism for example, it can present differently in different individuals.
So what is life like for me with multiple disabilities? First off I will tell you that I am partially sighted, Autistic, have PTSD, and while I was tested for ADHD and meet the criteria, I've not been diagnosed because the tester could not determine what was ADHD and what was my Autism and PTSD. So much for it being easy to just get an ADHD diagnosis! I also have anxiety and depression, but it could easily be autistic burnout, a condition which is real but which is not recognised by the NHS.
Living with these disabilities can be a lot more difficult than a lot of people would say it is. I've been accused of 'using my disabilities as an excuse'. I've been told that I have things easy, and yes, I have been told I'm just not trying hard enough.
I grew up with just my partial sightedness having being diagnosed, and while I was always being seen by the child and adolescent development centre, they did not diagnose me with anything until I was diagnosed with Asperger Syndrome four months before turning 17.As such I was held to neurotypical standards in behaviour, work ethics, and skills. It also meant that I expected to be able to perform as well as my peers academically and in life. As a child I had dreams of being a surgeon, then a singer/DJ, then I was going to write the operating system that would finally unseat Microsoft Windows, then as I was making my way through my first year at University, I thought I'd be able to make a full-screen magnifier for Windows similar to ZoomText, but very cheap.
Unfortunately there have been things I've always struggled with, that could not be explained by my eyesight alone. Things like organisation, time management, always losing things, poor handwriting, being unable to differentiate between people being serious or having a joke, knowing when or if it is appropriate to say something in a given situation, and personal space. These were all things I was told off for, but not supported with, because, like I said, I had been held to neurotypical standards. Even when I was diagnosed with Asperger Syndrome (a diagnosis which has since been changed to Autism), I was still expected to carry on as before. It wasn't until I was at University that I knew that there was such a thing as the 'National Autistic Society', and the only reason I knew of their existence is because Vodafone were running an awareness campaign on their Vodafone Live WAP page (who remembers Vodafone Live) back in November 2006.
Anyhoo, because I'd been running at full chat at school (I went to school in England so it was GCSEs, AS-Levels, then A2 Levels) and later trying to get into groove of the University way of working and self-motivated study (I don't think I ever did fully get into that), I feel like I hit burnout. By the final year I was being helped to the finish line in a manner similar to that of Delaney's Donkey running the half-mile race
Unfortunately I do experience meltdowns as part of my Autism which is extremely unhelpful, and it did cause involvement with the police during my University years which left me with PTSD and anxiety. After I graduated from university, I needed to try to find a job, but despite lots of job searches, and even interviews, I was not hired. Eventually I decided to try my hands at a small computer repair business, but this did not work out due to my mental ill health, so I had to wind that up and was signed off.
Living as an adult with multiple disabilities is difficult. It's difficult for me to be able to see well enough to keep my home clean and tidy, so we have cleaners. In the past I've found it difficult to cook and eat meals at regular times due to both motivation and sometimes being unable to see if things are thoroughly cooked. I also struggle to see cooking instructions and use by dates. Time management and organisation are still things that I find difficult, despite multiple tellings-off by adults, and even school detentions. I have also struggled to live on my own as I find it extremely difficult being on my own for long periods of time. I always thought that I was an anomaly because of this as stereotypically, Autistic people like being on they own don't they? That was until I found the YouTube Channel I'm Autistic, Now What? where the woman behind the channel, Meg, said that she didn't feel she could live on her own, which made me feel validated.
All this aside, there are things that I do to try to make things easier. I now live with Victoria in a flat share. This flat is in the centre of town, so we don't need to deal with the stresses of bus travel to access facilities here in Inverurie. We have a large dining kitchen with a dishwasher, which makes it easier to prepare food, and to clean up afterwards. I have extra lights where needed, to be able to see what I am doing, and as I said earlier, we have cleaners come in once a week who clean all the flat for us, and do a great job of it. They will even check the dates on our food as well. In Aberdeen I used to have support workers come in four times a week to help with cooking, cleaning, shopping, phone calls, household admin and appointments. Since moving to Inverurie, I have been entitled to precisely NONE of those things.
As I hit my thirties, I've often felt that my mental health has taken my adult youth from me, and I'm now left wondering what is next. When I was a teenager working hard to achieve at school, I always felt that good things were coming for me; opportunities to both change the world, and to open doors for my adulthood. Since the Pandemic, however I've wondered what actually is there. In 2021, I contracted cellulitis which left me hospitalised for a week. My thoughts of the future, where once was fantasies of great jobs, hefty pay packets and opportunities to make my mark, now were replaced with fears of diminishing faculties, bouts of ill health and more hospitalisations. This came to a head in 2022 when I read an article about what you can expect in your forties on the Internet which detailed scary predictions like 'the first cancers will be seen in your friendship group' and 'your bladder will slacken off which means you'll need to use the bathroom more during the night, which will mean your quality of sleep worsens'. Honestly, I feel like I've went straight from the late teenage/early 20s 'just starting out' phase all the way to the age-related deterioration phase, completely skipping the productive adult years phase. That does make me feel angry as I'd worked hard at school and Uni for better. In 2022, I started fearing my eyesight was failing as I was no longer able to enjoy retro laptops as I had in my 20s. Reading that article left me with the fear of only having a short amount of time once I'd sorted my life out before the health issues of age set in. While my predictions about only having a short amount of time where I'd managed to get my life in order before the health issues set in have been false, it is only because I've started to experience health issues already, before I move in with Victoria. In 2023 I started to experience plantar fasciitis (colloquially called policeman's heal) which means if I walk too much, I can end up with severe foot pain the next day, and I have extremely regular cellulitic flare-ups. I've also had issues with my ears, and other things, and constant feeling that my eyesight has deteriorated despite a few opticians saying it is better than it had been in my late 20s.
So what is next? I do believe the move is the start of something more positive. We have a nice place to live in, which should lay a solid foundation on which I can rebuild my life. I am in therapy with someone who understands Autism and my trauma. I'm trying to treat my plantar fasciitis as best I can. I'm hoping to get back into swimming, and I enjoy taking part in various social groups in town. It is good to know that people look out for us in Inverurie, and the local shopkeepers know us; I mean it does help when you have bright blue hair as I do.
I would like to say though that I find it extremely unfair that when we are in times of austerity, it always seems to be people with disabilities who must face cuts first. Recently I've found that costs for support have been introduced where there was no costs before, and these are high costs, that most people with disabilities, especially those on benefits cannot afford. Not only that, but eligibility criteria have been tightened, and now a lot of people are allowed to fall through the cracks. I've found with horror that this has resulted in people being hospitalised in mental health facilities or worse, they have found themselves in the criminal justice system. I ask this. What is the cost of giving someone a few hours of support in their own home compared with the costs of keeping them incarcerated in hospital or worse, in prison. How long do you expect to keep those people there. If you ever release them, what then? How is it fair that disabled people's lives are allowed to be ruined just to save a few quid, when councils could choose not to fund vanity projects, or mega rich people, such as those with companies valued at billions could be made to actually pay their fair share of tax (and no, I don't mean taxing the heart out of middle class people who have worked all their lives and have run foul of tax brackets that have not changed since the cost of living crisis began in earnest in 2022).
Not only are people with disabilities being faced with reduced support (including a limit on how many miles they are allowed to drive in a Motability car), but we're also being vilified by the media, yet again! We are painted as lazy scrounging work-shy shirkers who fake disability in order to claim free money from the government. I grew up in a family who tried to instil values of 'if you want it, you work for it'. I diligently studied hard for my GCSEs and A-Levels. I tried my best at University. What I ended up with was a cocktail of mental health issues to supplement my disabilities, burnout and now physical health issues. This is not what I did all that work for! For me personally I would like to have the physical and mental health that I had, even before I started my GCSEs. That way I might have a shout at being able to do something good and to live my best life.
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