I believe that it is part of my duty to change the status quo – speech impairment is rarely discussed and solutions and adaptations to speech impairment are discussed even less. This is where I realised this must change! The status quo must go – my plan? Challenge and change the system. But I need your help! We need to unite privilege and understanding to challenge this systemic version of normality – audiences and people need to adapt – we should not fear the unknown but grasp the opportunity to change! Who is with me?
Watching Michael J Fox on The Graham Norton Show made me reflect on my own disability. For those who don’t know, Michael J Fox – most famously known as Marty McFly – the dashing lead in the 80’s classic film trilogy Back to the Future – has Parkinson’s. After his diagnosis, he has devoted so much of his time to raising awareness and funds for Parkinson’s research. As he was talking, I noticed he was subtly trying to hide his tremor in his right hand by holding it down with his left.
He shared a story of after coming to terms with the impact of the nature of his neurodegenerative disease and a subsequent spinal cord injury –breaking his arm – seemingly relatively inconsequential – but it was that made him feel temporarily defeated. His book shares his shift in mindset – reflecting on the challenges he faces with the juxtaposition of mortality. It is in the most challenging, dark times in life – where we truly question our true purpose.
In my own life, the two most challenging and most apparent impactful instances happened within the first six years of my life. It is later when the real challenge begins, and the test truly starts. When you can’t have that crucial, comforting conversation with a parent you lost before you knew the true impact of life without them. When, no matter how hard you try to align your standards and expectations with your peers – you have a consistent doubt from multiple angles that constantly attempts to dampen them. It takes integrity and a strong sense of self to sustain poise and demeanor in the face of adversity – an approach I try to aspire to but I often falter.
At this point his voice became slightly more slurred as his attention was being diverted to efforts to conceal his tremor. To me, this demonstrates the efforts we go to normalise for the benefits of other people to provide a slightly easier pathway for those with similar challenges to follow – little by little.
I am still not entirely comfortable with my disability. I find myself concealing my own hand and arm that I cannot control and almost every day I speak with a deep discomfort in my speech impairment. My speech impairment remains the most difficult aspect of my disability. This is because I feel this is the most revealing part – it is often misunderstood – in more ways than one. I often reflect on this element and I have to remind myself that it is vital that I do not shy away from the spotlight when I do have the opportunity.
It is unfortunately the stark reality that there are very few people with speech impairments in the public eye – I have been pondering this issue a lot recently – especially since the digital world has now become the way a lot of us communicate in our daily lives – work and otherwise. Confronted with a very real dichotomy of the dread of being filmed, recorded, or even captured on camera whilst needing to continue to work. Being thrust into a world I had actively avoided for years for fear that I would not be understood or look slightly lopsided – all captured on camera quite literally potentially for the whole world to see. In a face-to-face setting, I had almost nailed my introduction on entry – caveating my speech impairment with humour to make others comfortable – but also so that very awkward barrier to be broken down that blocks active listening to encourage people to unclench, relax and actually hear me. I’d begin with, let me just address the elephant in the room - I know it, you know it – we all know I have a speech impairment – let’s not let that get in the way. Please don’t be afraid to ask me to repeat myself – I’d rather you do that than not understand, smile and nod. If I am nervous, the first thing I say is often inaudible, let alone unintelligible – breathy, anxious and strained. By the third sentence I’m generally ok but getting there is genuinely the most difficult thing I have to do. In a physical room – you know where you stand a lot sooner – quite literally.
The digital exposure on mass to many different people in a day is exhausting anyway, having to annunciate and put effort in not only what you say but how you say it is doubling exhausting because of the lack of interpersonal delivery. I was told recently I should consider my audience and caveat my speech with a warning – not quite “may need subtitles” but not far off – as a way of making everyone else comfortable and prepared – I was stunned into silence – rare - but it does happen – this prompted me to take a breath and consider my response – the internalised stigma that I have been battling with for 28 years hit and I responded – do you know why I do what I do? The leg work for someone with a speech impairment – the unseen internal torture – the daily crisis in confidence – the hidden pain and anguish that go alongside a confident exterior - with the assumptions made left, right and centre – that are, more often than not, met with education not anger or upset – to be told that I should consider others in the way that I get through a video call with 40 people you don’t know – is it my responsibility to comfort those who are uneasy with my speech or is it my job to continue speaking to do my part to normalise speech impairment - without apology or a comedic caveat? It is in fact ultimately my choice – a choice that I put more thought into than this person cared to comprehend. A choice that impacts me – a choice that regularly plagues my mind.
Exposure is key – the more exposure – the more accustomed we become – unfortunately, so many people with speech impairment are silenced by the assumptions, the stigma and the fragility of confidence we often face. Silenced by the twisted notion to ensure others are comforted before we begin to embark on what we are there for - related or not. This is the double-edged sword in the matter. Not forgetting the huge bias experienced momentarily within every interaction a person with a speech impairment encounters, the instantaneous question of intellectual ability which goes hand in hand with the fear of not being understood. These are thoughts I frequently grapple with.
I fight the fight because it is important to level the playing field – we have so much more to do.