Al (she/her) Disabled & Chronically Ill Creator, Writer, Advocate
The problem with independence is that it doesn’t exist. Not in the truest sense of the word anyway. The word independence is often associated with disability, as if it’s a goal to strive towards and something to be celebrated. This idea that independence is an achievable and desirable concept is inherently ableist and impossible.
A ‘Sensory Safe Space’ is a space, usually your bedroom or a private space in your home, where you can feel completely comfortable, with as many of your triggers minimised as possible. This is so important for everyone, as we can all feel overwhelmed at times. However, for those with disabilities that are impacted by external stimuli or sensory input, these are pretty much a necessity (if possible!) These disabilities are not just the first ones that come to your mind, likely autism and sensory processing disorder, but also for a large group of chronic illnesses. Often things like bright lights and strong smells can cause migraines, nausea, seizures and physical pain for many people. If this sounds like you, here is my step-by-step guide and top tips for creating a space where these symptoms are less likely to be triggered.
I have now been bed-bound for over 8 months, and when I say bed-bound I mean the only times I have left my bed are to use the bathroom, to go to hospital, and the few minutes where my mum changes the bed linen. As a chronically ill and disabled person, this is something I’ve experienced before but to a much shorter extent (no more than a couple of weeks). So, I took to the internet in the search for tips for being bed-bound, and I came back with na-da! So if you’re currently bed-bound, here are the top tips I’ve learned in the past 8 months.
For the last week of July, I had a Q&A on my Instagram stories about Disability Pride Month. This brought up a lot of interesting questions, so I thought I’d summarise a couple of the important ones. You can see the Q&A on my highlights on Instagram if you’re interested in reading more! (@a_spoonful_of_pain)
To all the young people with chronic illnesses and disabilities, considering university If you’ve been sat in classes at school, sixth form or college and been told that going to university as soon as you leave is your only chance at success, this is for you. I’ve been exactly where you are. This is My Story.
An overview of the yearly published statistics that show the ableism within the UK, and why we need Disability Pride Month. Whilst we celebrate Disability Pride Month and all the positives that disability brings us, we also continue to fight for a world in which disabled people are safe and treated equally.
A diagnosis doesn’t make a person disabled. Some live with undiagnosed conditions for months, years, decades, sometimes even lifetimes. This doesn’t mean their disabilities affect them any less than those with a name. Being undiagnosed is scary, and it’s hard work navigating the conversations that come along with it.
People may wonder what grief has to do with chronic pain and illness… Well a whole lot actually. When a person starts to live with Chronic Pain, their whole life changes. They can no longer live the life they live and there are many things they just can’t do anymore.
Ableism is something disabled people experience everyday – we don’t even have to leave the house! This is a topic I have become ferociously passionate about in both a personal and professional manner because I’m a disabled person, working and volunteering with disabled people. But more importantly, I’m passionate about this because I am a person. So what does Ableism look like? Well, I have compiled a short(ish) list of the ‘Top 10 Most Common Ableist Comments I Hear’.