Posted in Archive, December 2020

International Day of Persons with Disabilities 2020

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The theme this year is ‘not all disabilities are visible’. This is stressing the fact that not every condition is immediately visible; according to the WHO report roughly two-thirds of people with a mental or neurological disorder will put off going to a doctor for help largely in part due to stigma, discrimination and neglect. As someone who has very much been on the receiving end of this trio when it comes to living with multiple neurological conditions, this comes as no surprise to me.

Looking at me as I am right now, curled up on the settee trying to not make to much noise so as to not wake the kids, you could be forgiven for not knowing I had a disability; even if your keen eyed and spotted my odd eyes you wouldn’t know that my sight was impacted and would be unlike to think too much about it. However even when you can spot my spasms or a dislocation, you cannot see my brain fog, my sensory loss, the neuropathic nerve pain, no one can see fatigue fight, the pain induced insomnia, the sixty odd dislocations a day and so much more.

Spot the faulty eye

I love talking with young children about my disabilities because they don’t hold back. “How does your chair work?” “Can you get upstairs?” “Do you have to put you your chair in the bath?” The look of fear on the parents faces as they worry that something not deemed politically correct may be asked is what I find disheartening. Without these beautiful minds being curious how can stigmas be fought against, broken down and normalised? This should be praised and encouraged. I appreciate that not everyone will want to be asked, but you’ll be surprised by how many people are more than happy to discuss these things.

Disabled people, whether the condition is visible or not, physical/mental/learning or otherwise are still people. Next time, pause, maybe ask a question, you could be amazed at how it opens your eyes.

Posted in Archive, July 2015

To University And Beyond!

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I have some incredible news for you all! I think this tops all my positive news so far this year. I have been offered an unconditional place at Oxford Brookes University to study an undergraduate degree in Publishing Media this September. This wasn’t planned; more about that later. I applied just over two weeks ago and it was a shock to find myself typing out my personal statement, however I’m over the moon and counting down the days till the course begins.

I went to an open day last month with the idea in mind that I would apply to study in 2016. Whilst I was there I had a lovely chat with the course leaders who were impressed with my Cosmo articles, my work editing the church magazine and of course my blog. They encouraged me to speak to admissions and apply as a late applicant to study this September. In all honesty I didn’t expect to get a place. The deadline to apply was back in January so I was really pushing my luck. Yet can you believe it, for once luck is on my side?!

I was astounded at the open day by how disabled friendly the university is. The ensuites in the disabled accommodation are comparable to modern hospital disabled facilities. Ironically it will be easier to keep myself clean at uni than at home! The disability service team talked through with me the support that will be on offer for me, which really helped put my mind at ease. There will be a pull cord in my room and bathroom for if I need emergency help when I’m in the flat. On days when I am suffering from a flare up of symptoms l I can ask for a ‘buddy’ to be with me all day in case I need help. There is a fantastic range of support available for both my physical difficulties and my Dyslexia. I have been beyond impressed by the speed of contact from the disability team. I only received my offer yesterday from the university but this team have already been in contact to arrange support for the upcoming year.

It’s all happened so fast and I’m sure the next two months will fly by. Returning to university study is a huge step. Moving to university is an enormous step. I have relied on my family to care for me, when Benedict the Dystonia Alien decides to come out and play, for so long. I have never had to deal with my condition on my own, so this will be a big learning curve, but it is one that I am extremely excited to experience. The next three years I’m sure will have bumps in the road but I plan on enjoying the journey!