The Face of Discrimination
painting from my experience
Three years ago today I left my business in Whitley Bay, having spent the afternoon photographing new stock. It was dark, cold and raining. As I made my way to my car parked in the lane behind the shop I was #attacked by an unknown assailant and left unconscious. The only memory I have of that event is waking up on the ground, tasting blood in my mouth and trying to call to a distant dog walker for help. Try as I might I couldn't make a sound and so began my journey into the world of #silence and #discrimination.
In the very early days, the first two as it happens, I was denied a home visit by my then GP. The local mental health team who were involved in my care due to my existing post traumatic stress disorder, telephoned me following contact from a friend to explain my need for help. They telephoned me, even though they had been told I couldn't speak.
Over the next few weeks I did regain some #speech, it was very broken and trying to stammer my words out was like spitting against a hurricane. None of the professionals seemed too bothered, they were all assuming my speech would just return in time when my Post Traumatic Stress settled back down. However that never happened and my speech just disappeared one day and it's not returned.
I began to rely on writing in a notebook to convey what I wanted to say. I got through a lot of notebooks. Several months later I returned to my GP to say this isn't working for me, what can you do? I remember the look of surprise that I still couldn't speak but she still wanted me to 'just wait'. I changed GP.
A referral was made to speech therapy, I tried it for a while but it made no difference. Waking up each morning and going to do exercises in the mirror became devastating for me. I lost all faith in my voice ever returning and so the speech therapy was stopped by mutual agreement, as my depression was deepening and mental health deteriorating.
The one positive that came out of working with the speech therapy department was that I learned there was technology that could help me and I was loaned a mini ipad to use with some #AAC (augmentative and alternative communication) software, so I could type into it and it would speak for me.
It felt great but only for a short time, as most software is written for people with cognitive impairment, something I didn't have. I ran my own business and I was teaching. I was surprised just how tiring it was to type instead of talk, as I now had to consciously think of each word and spell it. I also had to deal with the hostile ignorance of others.
I had to do a lot of homework on both hardware and software. I wasn't directed to a specialist or given access to one. I was told my local authority didn't fund #communication aids. I found that difficult to believe but it was proved correct. When I asked North Tyneside Adult Social Care for advice they told me I should use 'SIRI', which as some of you may be aware is in fact a voice activated digital assistant for iphones... I have kept the email.
How The painting Progressed
I was offered help by my speech therapist to apply to charities to fund a device, but warned it would mean multiple funders and applications, as none of them paid for aids outright, they only offered small grants.
I decided to forgo that pantomime and just buy my own, as there was immediacy to my need.
I bought a tablet and some software. Within a year I developed problems with my right hand due to the constant pounding of a touch screen. I invite you to take a moment and imagine you have to type every word you speak, to understand the impact.
In an attempt to address the problem with my hands I purchased a soft touch bluetooth #keyboard which was gentler on my hands. However, none of that solved my issue of being unable to use a telephone. There had been a previous enquiry around a machine that had that capability, but was wholly inappropriate in every other way and with a price tag in excess of £3.5k. I am therefore still left with just texting, but that comes at a different price, as touch screens just hurt due to repetitive strain injuries and painful swollen joints.
I asked my GP for a referral to Occupational Health, as there are days when I can't perform simple tasks at home or work. Opening items, holding cups, lifting anything of any weight are all affected. The referral was made but refused by North Tyneside. It was diverted back to speech therapy, to refer me to muscular skeletal, as 'Occupational Health don't provide communication aids', which was an interesting response given that I hadn't asked for one. I had asked for help with occupational problems. I've kept that email too.
So here I am three years on, what I get is pain killers from the NHS, everything else I have to supply myself. Two machines, two keyboards, software, phone apps, pressure gloves, wrist supports and very soon adaptations for my home. My local authority, North Tyneside, do not even list speech loss on their sensory impairments page of their social care department. https://mycare.northtyneside.gov.uk/web/portal/pages/help/disability/disabilitysupport/sensoryimpairments
However it's not just mechanical help that has been problematic. Trying to adjust to having no speech has been savage. I wasn't offered any professional help at any point. I did ask, I've asked several times but always the response is wait another year from the NHS.
They are happy to increase medication for depression but not to do anything to address the underlying cause.
I reluctantly approached the private sector, there too there were issues. I approached four different psychologist practices and all four turned me down, stating they didn't think they had the expertise. Surely loss is loss? I wasn't asking them to cure me, I was asking them to help me adjust. I was left wondering if it was more about the fact I don't have speech? I'll never know, they would not answer that question.
Meanwhile back in daily life I have been laughed at as my artificial voice, 'doesn't suit me', or Google has decided to update and changed the finely tuned speech module back to American. I've been physically assaulted twice and verbally abused because I didn't say thank you to men who held doors open for me. At no point did I believe I was the 'ungrateful bitch' they claimed, but nobody came to my aid, or helped me to my feet. I am unable to contact the police myself, so I feel very vulnerable.
I'm told I should invest in typing lessons as my spelling could be better. I'm regularly called a 'dummy' or other such derogatory terms in my own business. The thing is when you are severely depressed, suffer from acute anxiety and are trying to type instead of speak, I wonder how many untrained typists would manage?
The final straw was Covid. Prior to the pandemic I could at a push communicate outside by using an app on my phone, which uses text to speak software. However, add social distancing of 2 metres and nobody can hear it. I have therefore been unable to communicate outside, or indeed anywhere but at my desk at home or in my business since March last year. It's been a searingly depressing and isolating experience and it's going to continue for some months more.
Knowing I can't communicate outside is very scary. I dread going out but then I dread staying in as I don't want to become agoraphobic. It's an uncomfortable place to inhabit.
Most weeks, apart from serving customers when I was at work I would have one or maybe two conversations, again using typing via zoom or messenger.
I have engaged a private therapist, thanks to those who have supported my crowdfunding appeal 'Coping with Silence' or purchased work. I knew finding someone was necessary as I was reaching the point of doubting my capacity to continue existing like this. Her support plus painting have kept things bearable for now.
The completed painting,
And so to this painting, which I began on the 29th August 2020 and completed on Monday 4th January 2021. It wasn't an easy painting to create. I often painted after being abused in some way, there will be a quantity of tears in it. I used the process to release some of the frustration I hold due to discrimination. It's not a self portrait in the traditional sense. I is made up of many many layers, just as discrimination is. I feel the painting is a portrait of how bruising daily discrimination affects people. It is a painting of my experience of the last three years of having an invisible disability.
Creating it allowed me to expose all of the unkind thoughtless crap I endure on a regular basis and am very often unable or too scared to respond to. How I wish I could scream 'Fuck you!' at some of the people who think it's acceptable to be truly insulting and obnoxious and aggressive.
The dirty bandages represent the lack of care and support. The overall darkness the silence and isolation I live in. The mark on the top of my head, the volcano of frustration I have to manage. I shall leave the remainder for you to consider. I have said enough from my place of silence.
Whatever happens in my studio, or wherever else I create, I shall write about it here on my #blog so you can join me on the journey if you wish by subscribing, or following me on social media.