Words by Jo Bull
My name is Jo, and I dare to exist while disabled. I am under the mental health team and I’m diabetic. I have experience on both sides of the desk in public services.
I don’t think it’s news to anyone that the NHS system is broken. Even before Covid-19 there have been areas of lack in terms of understanding and awareness with chronic illness, sensory issues, trauma informed practice, and hidden disability.
I write this because I need reminding of the following on a daily basis when I am ill. Because the system conditions us to feel like we are a burden, we are often left to manage our own illness – or treated as if we know nothing about our own brains and bodies after a lifetime of living and working within them.
And we can frequently experience unsafe treatment, in terms of both attitude and medication when practitioners are making assumptions or not paying attention.
The system is now so fragmented, overloaded, and traumatised, half the workers within the NHS are in states of fight or flight – and as no one has supported them to self-care, patients and service users often bear the brunt of that.
Sometimes they literally do not have enough bodies to do their job. Sometimes they are not feeling safe and grounded enough in their own selves to listen, absorb information, or keep us safe.
Two overloaded traumatised people meeting in these circumstances often don’t do well together. This is dangerous and distressing for people without complex needs, and even harder for those of us who do not fit the norm. If the system no longer works for the typical and abled it is now a massive hurdle for those of us who aren’t.
We need to pause, breathe, and meet each other – medic and patient – as two humans navigating impossible waters together. We need to have empathy for each other, without compromising needs or safeguarding, and without blaming, shaming, or being dismissive. Negotiating and navigating together, as a team.
As service users, we can tell ourselves the following things: they may not be able to meet our needs, they may not have empathy for us, they may not understand. This is not within our control. However, we do not have to accept or absorb arrogance, ignorance, abuse, or stigma.
We are not to blame for the gaps or lack within the system we keep falling through. The system’s lack is not the user’s fault; we do not need to hate ourselves. We are not a burden.
What we can have control over is how we view ourselves, and learning more about ourselves so we can continue to identify and ask for what we need.
Jo is part of the LOCAL AMBASADORS project, using community journalism to give local people a louder voice – including adults living with disabilities. For more stories from our LOCAL AMBASSADORS visit www.erdingtonlocal.com/category/la-news-features
If you would like to know more about the LOCAL AMBASSADORS project and join the team for free, fun, and friendly workshops on journalism and creative writing then email [email protected]
