My mum always jokes that I was greedy from birth, because when I was born I didn’t get just one disability, but three main diagnosis’ and a whole lot of extra symptoms as time went on.
I was born two months premature by C-Section, and had a stroke in the womb which caused the cerebral palsy. I was immediately placed into intensive care and was hooked up to many different tubes to keep my underdeveloped lungs going. With that start to life my family knew there would be some major health issues to come, but we didn’t know what they would be.
I was immediately placed into
intensive care and was hooked
up to many different tubes to
keep my underdeveloped
I was slow to talk and walk, and I was horrendous at sleeping. Social interactions scared me and I had to go to physiotherapy and speech therapy because I just wasn’t hitting those milestones. It wasn’t until I was five years old that we got a diagnosis of autism, dyspraxia and cerebral palsy and my parents finally had an idea what was going on and how they needed to help me.
Many ask, how does having these disabilities at the same time affect me? Does one make the others worse? Well, the best way I can explain it is that it’s like playing a game of Guess Who. It’s really very difficult to understand which disability is causing which symptom and what you need to do to help yourself, because it is very hard to differentiate between physical pain and pain brought on by your brain acting like an exploding computer.
It is very hard to differentiate between physical pain and pain brought on by your brain acting like an exploding computer
My cerebral palsy is mild enough that I still have almost full range of mobility, but have extremely weak muscles that cramp and don’t work the way I want them to sometimes. I have chronic pain and muscle spasms, but then on the other hand autistic burnout and absence seizures (caused by being autistic) also cause muscle spasms and pain. It’s really difficult to know if I need to self regulate or see a physio because my brain and body can’t tell me the source of the pain and discomfort. I often just end up doing as many things as I can until the pain has decreased to a manageable amount, though this can lead to humorous but exhausting experiences. One day at work I was experiencing really bad migraines and felt like my nervous system was on fire, and had spent three hours trying muscle rubs, heat packs, CBD oil, turning the lights off.....and it turned out to be a sensory overload caused by wearing socks! This is why the advice of taking a paracetamol isn’t always the best.
I do fall down or bump into things as my muscle tone is so weak and dyspraxia affects my coordination, so of course I end up tripping and slipping my way through life! I can also get very fatigued because my muscles are working overtime to keep me upright, and my brain is working overtime because I’m autistic, so no matter how much sleep I get I’m always extremely exhausted. Not that it stops people telling me to ‘just go to bed earlier’ though.
School was always difficult. I was bullied for not being able to speak properly, both from poor muscle control in my face and executive dysfunction. The teachers thought I was never putting enough effort into P.E because I wasn’t social enough and I struggled to keep up with the other children physically. Meltdowns and sensory overloads were seen as bad behaviour because the teachers didn’t have any knowledge of autism, and anyone who was ‘trained’ in SEN didn’t have the time to help because I wasn’t classed as high care. In my last year of junior school I was constantly bullied by my year six teacher as I didn’t “look disabled”, whereas another girl who also had cerebral palsy got a lot of care and attention because her CP was clearly visible.
Medical care is also really hard to access when you have multiple disabilities. When you book an appointment with the GP, they don’t look at your file properly to see the diagnosis you received 20 years ago. I often have to tell them my medical history myself but have always been gaslighted or not believed.
One GP informed me that it was no use getting on the waiting list for chronic pain as it was almost a year long and they would just tell me to do more exercise. When I finally got referred back to a physiotherapist, the physio only saw me for five minutes, checked my balance and then told me to practice yoga poses. I’ve been offered paracetamol, yoga classes and told to manage stress better, but have never been referred to a specialist who can tell me why cerebral palsy and autism both affect my body this way and what I can do to help it.
I do wish there was better medical care and training given on patients being neurodivergent with secondary disabilities, but I also know that the NHS has got a very long way to go before that even happens. Every day ableism is also something I experience through comments of not being focused enough (executive dysfunction) getting my sentences wrong (ED and burnout) or that I’m always tired (every disability that I have.) I think people have become used to making people fit in a neurotypical, abled bodied box with the view that if we do the things they do, we wouldn’t have anything to complain about!
Being disabled in these ways has meant that surviving on my own is harder. According to the government I am mobile enough to work full time and therefore don’t qualify for any benefits, so of course I have to work full time to cover my bills and rent. I work in a very demanding sector with a lot of pressure, and there is this expectation that you can’t have problems or show any vulnerability because then you won’t be valuable to the team, so I’ve had a really hard time advocating for myself and getting accommodations approved. I’ve had jobs where I’ve been made to stand for hours or carry heavy boxes, been told I just need a change in routine when I’ve explained how my mobility is decreasing and always, always treated differently from everyone else. It’s as though neurotypicals want you to act exactly like them whilst making you aware that you will never fit in.
In my first ever job I was asked why I talk too much and at the wrong volume, why I walk/run funny and was then pulled into a disciplinary because I had yet to learn and understand the social cues required to fit into a business environment. My career has become like a really problematic seminar where you have to keep scribbling out your notes because the rules keep changing and there's no break to fully process what is going on. Because of the lack of support and understanding I have been through quite a lot of jobs, breakdowns because of those jobs and have wanted to quit working altogether about a million times, but can't because I'd struggle to get enough government help to survive.
I do think I’ve faced and still face a lot of ableism because I have more than one disability, but I think that is because both disabilities aren’t extremely visible to an untrained eye (or even a trained eye at times!) and because of the way this society is missing an in-depth and accurate education on disabilities, even having a diagnosis won’t protect me from ableism.
I do think I’ve faced and still face a lot of ableism because I have more than one disability, but I think that is because both disabilities aren’t extremely visible to an untrained eye
Luckily, I have a really good support system within the disabled community on Twitter. There will always be someone who has been through the same thing and can tell me what helps and what doesn’t. Never in that community has someone not believed me, and I can take comfort in the fact that eventually I will stumble on some information that can change my life for the better. It was my online friends who sent me an acupressure mat which is really helpful for chronic pain, and they also advised me to see an osteopath instead of a chiropractor so that has been really helpful!
There is a huge part of the online disabled community who has other disabilities aside from neurodiversity. It is heart-breaking that most of them, like me, have faced some sort of ableism in our lives but it’s also what makes them very strong, well informed advocates. When the doctors diagnosed me I just got the words “autism, cerebral palsy, dyspraxia” but through Twitter I learnt about autistic burnout, stimming, executive dysfunction, why I have a slight dairy intolerance, ways to deal with chronic pain and the best way to move when you’re having a bad flare up (hint: it is NOT yoga.)
The best part though is seeing the kind words and support when I’m having a bad day. There will always be someone willing to send pet pictures or I’ll join Emily Katy’s Not Alone Chat at 8pm to talk about how I’m feeling and get some advice. During the pandemic there became more spaces online for disabled people to talk to each other because there was nowhere else we could go to access help, and those spaces are still around today for which I am grateful. Those sort of interactions are ones that you really can’t take for granted and because of them, I can find solace in a world not made for me.
Those sort of interactions are ones that you really can’t take for granted and because of them, I can find solace in a world not made for me.
Twitter accounts and hashtags that have provided support