We’ve been talking to York Ending Stigma recently about their work and also what it’s like to have a physical impairment and poor mental health. Lauren, one of York Ending Stigma’s champions, has kindly written about this, and ideas of what disability looks like, for us.
“But you don’t look disabled…”
I’ve heard this quite a bit, in various guises, and it’s been said to me and people I know on a lot of occasions. There isn’t a look of illness, or disability, which is why this stuff is frankly irritating and invalidating, and as we should know, not all illnesses and disabilities are visible. Unfortunately, disability doesn’t have a ‘look’. It’s not a coat that can just be removed. I might not look unwell, or sick, or disabled, but I am.
Some of this comes from not being ‘seen’ on my worst days. By this I mean, the days when I can’t get out of bed because of a flare up, when I can’t leave the house. The days where my pain levels and fatigue are really intense and high, or for example, the anxiety I’m feeling is causing paranoia and spiralling thoughts. On these days I might actually ‘look’ sick, not always, but I probably won’t have any energy to do anything other than eat, sleep, watch mindless TV or movies, and maybe scroll social media, not necessarily interacting with anyone else.
“You can’t be disabled, you don’t have a wheelchair”
It’s massively irritating, for me, being in my late twenties and becoming disabled (invisibly) within the past two years, as there seems to be an expectation or perception in society that disabled people are older, as in over 70, which isn’t true, and that to be disabled you MUST have a wheelchair…which again is not true. Sometimes it does feel like society judges me for not fitting their expectations of the so called stereotype (which is hideously outdated and actually shouldn’t exist) of a disabled person. Within the Equality Act 2010, a disability is defined as “having a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”. So, here’s the thing – it doesn’t say anywhere that there’s an age or gender specification, or that a wheelchair is compulsory to identify as disabled.
“You’re too young to be disabled”
It’s probably time for me to introduce myself a bit. I’m Lauren, I am almost 28 (at the time of writing this), and I have several conditions that mean I identify as disabled, both due to their effects on my daily life, and due to the barriers that I encounter within society purely due to the health conditions I have. By looking at me you probably wouldn’t know that I had any disabilities, however this doesn’t mean that I need to be declaring them for you to respect me or my boundaries.
I am autistic (diagnosed very recently), have struggled with social anxiety since around age 8, and additionally have generalised anxiety disorder. I also have seasonal affective disorder, and due to two episodes of emotional abuse, am self-diagnosed with complex post-traumatic stress disorder. Additionally I have fibromyalgia, chronic pain/back problems, PCOS (polycystic ovarian syndrome), joint hypermobility syndrome, and almost certainly have POTS (postural orthostatic tachycardia syndrome), with bits and pieces of other things involved too.
Daily life isn’t that easy. This may shock you, but I do work. I love my current job and have the reasonable adjustments that I need to work effectively, enjoy my work and leave me with a bit of energy outside of work – this wasn’t always the case but I’m not going to dwell on that.
We’ll hear more about what adjustments allow Lauren to work, and how she finds daily living as a disabled person in part 2!