A little less conversation, a little more action please.
Communication: something the majority of people take for granted. But for someone with a speech impairment, communication can be a daily challenge. Join me as I recount stories from my past which have helped shape my views on the desperate need to educate wider society, and the impact this can have on mental health and well-being.
A little background before we get into the hard stuff. At three years old, I had two strokes resultingin full paralysis except for my left big toe meaning I could not move or communicate, at least not in the conventional sense. My brilliant, innovative dad created a flip chart with pictures which meant that I could communicate though my toe, ‘wiggle once for yes and twice for no’. This elegant solution enabled me to engage with my parents and the medical staff treating me. The human brain is truly remarkable and as a young child my brain had amazing capability to effectively rewire the brain – also known as plasticity. This meant that I was able to regain a lot of function. Rehabilitation was quite quick – that being said it was frustrating having to learn to walk and talk again from scratch – having just gotten the hang of it first time around. As the result of the severity of the stroke to my left brain, I live with residual effects in the form of spastic dystonia aka strong involuntary spastic movement on the right-hand side of my body and the region of the brain typically associated with the mechanics of speech was completely wiped. Subsequently I have a fairly pronounced speech impairment.
This is the area of my disability I find most difficult. It has had the biggest impact on my life. A lot of the issue for me is the impact on my confidence. Anyone who meets me will know that I love a good chat – I could talk until the cows come home and then some. It is a very strange dichotomy.
This goes way back to school; I remember vividly being in a parent-teacher meeting when I nervously approached my drama teacher and expressed a real interest in doing drama at GSCE level. My comment was met with a blank stare closely followed with the comment which would affect my life the most “but you can’t speak Sarah”. This comment alone winded me. My Dad was next to me and I saw the fury in his eyes. I looked at him, gesturing in a way that gave him full permission to educate her. And rightly so, he did. Surrounded by teachers, parents and peers, I walked out of the room crying. My Dad stood up and the room was silent – you could hear a pin drop - as he began her slow takedown to ensure she knew the impact of what she had said. Even now, I can picture the room and the feeling in the air, and my sinking confidence was paramount. Little did everyone know, this comment would plague me for the rest of my life. My confidence in my voice has always been lacking and definitely at times despairing.
Fast forward to the first day of my first job, and I have been asked to make a call to a speech and language therapy centre. I was reluctant to say the least, but I continued to dial. I was so nervous in this moment; I knew my voice would not be my friend in that phone call. The worst thing was, the person who answered the phone, the receptionist from the speech and language centre, proceeded to rudely dismiss my call because she couldn’t understand what I was saying. She quickly retorted “email me; don’t ring” and hung up. This phone call has impacted my work life ever since. The trepidation I experience on the end of the phone is unpalatable.
Let’s paint a picture in another setting. Being in hospital isn’t great anyway - but what happened next affected me more than I ever thought it could. Getting your observations checked in the middle of the night isn’t the most ideal scenario, but being woken up and patronised is worse. While this nurse was pulling me around, she was asking the most unimaginative questions. With the age old head tilt of sympathy, she began to ask me if I went to special school. She not only assumed my intelligence, but showed no sign of remorse as I was quick to correct her.
All these stories demonstrate the ease at which people can impact the confidence of a person with a disability, not least a speech impairment. The importance of communication that other people take for granted is something to be more deeply considered. Through education and other platforms, we need to use these teachable moments to demonstrate abilities should not be assumed or judged. Children I meet in day to day life can catch me off-guard with their honesty and intrigue, with an open curiosity as to why I cannot speak properly. When I am not prepared for this, it can definitely set me back, but I am reminded of the critical window this exchange provides for me to educate others. Luckily my love for a chat is greater than my doubt in my ability to speak, but I am acutely aware in these day to day interactions how quickly I allow myself to be wounded.
Contrary to my drama teachers assumption, I now actively advocate for people who can’t, or don’t feel able or confident enough to speak for themselves. I think the true lesson here is to reflect on the momentary nature of passing comments, thoughts and assumptions regarding ability or disability and the true impact they can have. I have harnessed the opportunities to make my voice heard, and will continue to do so.