Proud

Happy pride month readers! No, I haven’t got the month wrong, July is actually disability pride month, but obviously you all knew that right? Yeeeaah, me too…. totally. Okay so I found out a few days ago and I’m sure for many of you this is the first you have heard of it.
The idea for a dedicated time to celebrate those with disabilities began in the United States in 1990, what began as a pride day has evolved into a pride month and is now recognised in other countries including the UK, so why haven’t we heard of it? Possibly because the idea is newer than other celebratory months, or maybe it’s because companies cannot make money off of it. News of ‘pink washing’ (also referred to as rainbow washing) is a constant reoccurence during June, a term that refers to businesses promoting pride as a way of boosting their image. Perhaps that would be more difficult to do for the disabled, after all with many of us unable to work and on a limited income we do not have the purchasing power of the general public.
Throughout the year there are dedicated days and months to celebrate the marginalised communities, such as black history month and pride month. During these times the voices of the unheard are brought to the forefront, given a chance to share their stories and their struggles. Through this, we are able to experience a tiny part of their lives with the hope that it makes us more educated, more tolerant and more understanding. It’s hard to miss the beautiful rainbow-strewn high streets or the BuzzFeed articles about black and queer owned businesses. We are bombarded by information from every direction with ways that we can help the world be a better place. It’s a wonderful resource for those of us that want to help but don’t quite know how. These dedicated months are a fantastic idea, I mean, anything that can make the general public more tolerant has to be a good thing. We live in a time where people are being stripped of their human rights. Tolerance and understanding is needed more than ever. As amazing as these celebrations are, in comparison, the lack of enthusiasm for Disability pride is glaringly obvious.
Ableism is still rife within our world, whether its lack of access or the consistent usage of slurs it’s not difficult to encounter every day . In my own town there are many non wheelchair accessible routes. I am fortunately an ambulatory wheelchair user, so I can stand up, lift my chair over the curb, then continue my journey. For those that are unable to do that, getting around is a far more difficult task. Inaccessibility means so often disabled people are housebound, a possible reason for the lack of parades.
It can be difficult for those unfamiliar with disabilities to truly understand the difficulties. I have heard many stories of strangers asking a disabled person “what’s wrong” or “what happened”. These questions are more often than not merely curiousity, said without realising how personal that question is. Able bodied people take for granted the ability to move around freely. This is something I have noticed within my family and friends, a small insignificant walk to them might warrant a 3 hour nap for me! So many small insignificant parts of life can be affected when you have a disability, opening packets, looking for clothes, even using the bathroom. Which is why as a society we need to listen to the voices of one of the largest marginalised communities. A community that can be joined by anyone at any time. It’s only an accident away.
Whilst I am not proud of having fibromyalgia per say, I am proud of the way I deal with it. I’m proud that despite immense amounts of pain, I can experience joy and bring joy to others. I am proud of the community of people I have discovered and have become friends with. I am proud of every one of them whether they are able to run a marathon or if they’ve managed to get out of bed that day. I am proud to be neurodivergant, to have a unique and quirky outlook on life. I am proud that I’m able to share my thoughts with readers around the world. I am proud that I have helped others with the same condition as me. I am proud of the way society is changing to adapt to those with disabilities.

I am a proud disabled woman. And that deserves to be celebrated.

Once upon a pain free time…

Once upon a time a young girl was set for great things. She studied hard and had big plans to go to university and become queen of the world. Her dreams were realistic and achievable (maybe not queen of the world but everything else was 🙈) She was going to be a teacher, an artist, an author, an archaeologist… The list was endless, she was talented if a little indecisive.

One not so fine day when she was 13 she was magically transformed into the pain princess after being poked and prodded for months. Her wonderful fairy godmother granted her wish, but like all wishes it wasn’t all that it seemed. A name for what was wrong with her is all she had wanted after weeks and weeks of unexplained pain…

“Juvenile Fibromyalgia” at last a name , a confirmation she wasn’t going crazy! But little did she realised what lay ahead.

Fast forward 7 years, and here I am. I did okay in my exams but not as well as I should have. I ended up going to university close to my home town because my mental health was too bad to leave home. I lasted about 2 months then I took an interruption of study due to poor physical and mental health. I officially left the university by the end of the first year.

I’m hoping to get my life back on track but just like the millions of other people with chronic illnesses it can be much harder than it seems.

No happy ending I’m afraid more of a meh kind of ending, but who knows I’m still hopeful for my happy ever after one day, or at least a good night sleep.