Over the past couple of years, I’ve become very vocal about Accessibility and usually show my journey as starting with a conversation and a pint in a pub. In recent months I’ve started to accept that the true beginning for me began long before then, and I’ve simply been running from the truth.
Before I continue, I think it only fair that I let you know that this is a personal post. It’s not particularly about tech. It’s not even really about accessibility tools and capabilities. So, if you want to click away, I won’t be offended.
True Beginnings
The actual start of my walk down this path began with a lot of chronic pain so bad that it would cause me to blackout. The NHS, wonderful though they are, resisted doing tests and scans until some major permanent damage was caused.
They discovered that I have a degenerative spinal condition. The doctors have never given me a specific name for it, but they always use those words. Nobody has any clue what’s caused it, but they all agree it’s only going to get worse.
What it means is that my spine, and the associated things like discs etc, are decaying in different areas. I am also growing bone in areas I shouldn’t which then presses on nerves and things like my spinal cord.
It started in the C4/C5/C6 vertebrae up in my neck and that necessitated surgery to try and limit future impact – not fix it, or cure it, just to slow it down. I have a neck that doesn’t bend due to it now being made of a lot of metal and polymer, along with bits of bone. Unfortunately, the surgery only happened when it was discovered that my spinal cord was being crushed by 50% and that nerves were being pressured by a similar amount. The harsh reality is that nothing has or will recover from that, the damage is permanent. The surgery was done to delay, and maybe prevent, further damage. The surgery carried very real risks that I could end up paralysed, and with the location it would mean full paralysis.
Then in 2020, during the first lockdown, I ended up in A&E for emergency surgery on my lower spine. I was 1mm away from losing the use of the whole of my lower body.
Denial
The condition is degenerative. It’s not cured and it’s not going away.
After I had my neck surgery, I was told that within 10-20 years I could expect to see my symptoms worsening. Truth be told, we noticed it after 8 years.
I live in chronic pain and on a regime of medication that is just keeping me in control. Along with the medication I use Cognitive Behaviour Therapy to essentially box the pain up in a corner of my mind, and then I try not to focus on it. When the pain is really bad, I get tired, and my filters get eroded. Particularly around the things I say, because my mental capacity is reduced it leads me to be a lot less “people-friendly”.
Through all of this I have resolutely avoided the topic of disability or accessibility aids. It’s a future, and actually a present, that scares me.
I talk a lot about Mental Health. I’ve been very open and bluntly spoken about it. With my physical condition, I have spent so long denying the probable future.
Time to face the truth about Me and Accessibility
As I’ve been speaking to people about accessibility, and finding out why it’s often not talked about, I realised that there’s quite often stigma, shame, embarrassment, weariness, and fear involved in being open. In facing those conversations, I realised that I was doing the same about myself.
I’ve spent so long denying that it’s time I face up to the truth. If I’m putting myself out there as an advocate and ally, I need to be honest about my own story.
So, the truth is that my journey didn’t begin in a pub, but the start of my acceptance did. I’m not there yet, but you will hear me being more honest about it now. Denying it is not being true to who I am or my own personal principles and honesty. If I want to encourage openness and conversation it must start with me. How can I ask others to do what I won’t?
There’s no sympathy ask here, no seeking pity. I’m just laying it out there in the same way I do with my mental health. This is who I am, and this is why I do what I do.
What next?
The journey continues but with the personal realisation always at the front of my mind. If I’m honest I almost wish I hadn’t started to accept what I’ve denied. It scares me, and it upsets me. It also drives me even more.
I’ll be talking about accessibility as I always do, but the journey will no longer begin in a pub.
I hope you’ll continue with me on this journey into Accessibility and that we can transform perception and acceptance together. Please connect with me on Twitter and LinkedIn, and make sure to check here regularly for more posts on the topic. I’ll also be trying to publish a calendar of speaking events, and subsequent recordings.
Thanks for reading if you made it this far.