Friday, 8 March 2019

What disabled people want on International Women's Day

Today is International Women’s Day. A day when we consider the inequalities in society, including wage gaps, social standing, opportunities, domestic abuse. The often invisible and overlooked females in our communities and workplaces.

Now stick that person in a wheelchair, or a walker, and isolate them with inadequate public transport, tell your children to stop looking at them or that they can't ask questions, take away representation in films and tv and books, create buildings as tall as the skies and pile obstacles all along the sidewalks and pathways. Don't call out when people take our parking spaces, or skip us in queues, or make assumptions based on our young age... refuse to listen to those affected by all of the above.

Don't get me wrong -all my aids are works of beautiful engineering that gift me freedom. They're not the villain in my story. But there is only so much they can do in a society not built for them.

Thursday, 28 February 2019

Why Rare Disease Day is important to me

Today is Rare Disease Day. This day is for everyone with rare medical issues to spread awareness of their various conditions, and to take pride in our differences. Ehlers-Danlos syndrome is a connective tissue disorder -we produce faulty collagen to be exact. Simply put the glue that holds our joints together over stretches and so our joints easily sublux and sometimes even fully dislocate. On the other end of the joint hypermobility spectrum is Hypermobility Spectrum Disorder. These complex conditions can effect so many parts of our bodies, but for many of us the main symptom is chronic pain. EDS has 13 subtypes, and while EDS itself is seen as a rare disorder, Hypermobility Ehlers-Danlos Syndrome (hEDS) is the least rare (and the most common) form. Because of this hEDS may be viewed as a rare condition, while others view it as simply "rarely diagnosed". It's also rarely known -by the general public and my medical professionals. Rare Disease Day reminds us to show the world our zebra stripes proudly; to stand up and be counted amongst a group of individuals who usually go unnoticed. 

Wednesday, 27 February 2019


Some months ago I came across yet another health guru spewing the usual crap of TOXINS and CHEMICALS (OH MY!), and using such words in a way that you immediately know they have little concept of what either term actually means. Except this charlatan was different. This modern day snake oil salesperson was caught out, in a very public way

Source: Facebook

For those of you that don’t know, bushy-tailed, bright-eyed Belle Gibson created an app (and later a book) called ‘The Whole Pantry’. In this she began her mountain of lies -having brain cancer, her cancer spreading all over her body, saying no to conventional (IE real) treatments and insisting that she was being kept alive by whole food goodness, #WokeAsFuck and all that. In 2015 media investigations revealed that not only had she fraudulently collected money telling her followers it was for charity, but she had in fact made her whole cancer story up from thin air and even lied about her age as well many other details of her life. She was a pathological liar, wanting fame, attention, pity and a quick buck, and it wouldn’t stop there. 

She lied for years about having cancer and made up doctors - Source: The Whole Pantry

When pressed in interviews she blamed other people (including imaginary), played the victim, tried to distract from the questions being asked and most importantly -played down her role in persuading cancer patients to follow her example; health advice she had dished out so easily with little regard for others wellbeing. And that really is her biggest crime of all. She spoke directly with cancer patients and give them hope and guidance, she pretended to be one of them and stood as a beacon of health and wellbeing. She preyed on the most vulnerable and right out lied that she could prevent them from dying, as she had done with herself. 

But we aren't blameless here. We are a gullible society, wanting to believe in magic and fairytales, too lazy to look beyond and question, too egotistical to say "I don't know enough about this topic" and maybe we should listen to the real experts. We want hope and romance and we want it delivered by blonde white women in stylish clothes.