The unseen disability: how do you talk about it?

Week 1. The Unseen Disability: How do you talk about it?

As I settle down to write about this first of a series of blogs, many examples come flooding back of when I have struggled to talk about my disability: an incomplete spinal cord injury from a road traffic incident. This is explained by a number of difficulties: firstly, using the term disability; secondly, the emotional trauma of recounting certain aspects of my disability; and thirdly, the feeling of being entirely lost knowing when and what to disclose. In this blog I aim to shed some light on this cloud of complex facets. Focusing on if, when, how and what to communicate. 

Our lives are made up of communication; verbal and non verbal; to those we know well and those who know us well, and those we don't. Often I experience the starkest difficulties communicating when I am forced to be selective. To choose what I say and what not to. Often to someone I am meeting for the first time - whether that is at work or socialising. 

When people first look at me they see a tall, athletic, intelligent, friendly and at times, confident woman. They do not suppose for a moment that I am living with a long term disability, that my day is littered with experiences of pain, muscle spasms and stiffness. But this is the truth. I am trapped in a body that doesn't function normally, that is physiologically altered and is not efficient in the way it deals with the rigours of an ambulatory life. Each day presents a tension, of wanting to hide my difficulties and carry on despite them. Today it may be or feel ok but the next day it won't be and I will want to shout out and say: look here, I've been run over, my life is harder than it ever was. In the vain hope for understanding and compassion from anyone who may hear. 

I used to be a physiotherapist now I am a lecturer and researcher. One question I commonly face is what made you come into academia? It is unusual, at my age, so I think good question. I then sort through the potential answers: I didn't like clinical work. Not true. I really wanted to become an academic. Also not true. So what? The truth is this was the best option out of a number of avenues presented to me after my injury. It is not for a moment that I do not want to be where I am. But simply I wouldn't be here if I hadn't had the injury. So what do I say? 

Well it's personal choice. Professionalism reigns in my academic and healthcare arena and so when with a colleague the response may be 'a simple transition into academia while an opportunity presented itself'. At times I give no reason or motivation and leave that to questions - if they come. So at baseline, I say I made a side step into the world of academia. 

In the social arena it is less easy. Of course I can give my pat response. Diffident and nonchalant. Then the option is I can say 'I had an accident'. The potential responses flow... What kind? How? When? How are you now?  I often hold back from this response not wanting to create an awkward situation, shying away from the truth or minimising all that has and is transpiring in my physical and psychological life. When I do say it, I can meet ignorance, and I end up describing a list of symptoms, almost aiming to convince my listener that I have a genuine disability. I feel a burden to be inspiring, motivational, to have something to say for all I have been through. As if I owe society at large a life lesson! 

At times communication is silenced, frequently this occurs on the commuter train! Yes, the rule of silence in the carriage is not to be broken. However, when I have finished a long day at work have 2 or more bags of shopping, or not, and am forced to stand on the tube how I long to shout or cry out, please let me have a seat. Please. I know I look fit and healthy but at the moment I'm in agony. 

Not just pregnancy, chronic pain after injury can make standing on public transport agonising

At times communication is essential. In a few instances I have had to tell someone I don't know that I have left sided weakness and that I need to use my right side. Often when helping with a manual task. Or even getting my eye brows threaded... At these times people need to know your limitations, not how you got them. That can be short and sweet. 

So what advice can I give? It is not clear cut. It is personal. 

On one hand I encourage boldness, be confident, and tell people. Disability is not to be ashamed of. Even if people respond in ways which are surprised and dismiss it. However, with boldness comes a warning: Bolster yourself. Give yourself time. Expect to get it wrong. Reflect and learn from mistakes. Know that you are through and through human, inherently of value and worth. Expect unexpected answers; expect to be disappointed by people's lack of awareness or sensitivity; but also be prepared to be reassured. Many encounters will be positive and supportive. In addition be aware of your personal tendencies - do you place too much emphasis on your listener's feelings or response to what you will say? - do you expect too little from your listener? 

On the other hand have a reserved response (or a response in reserve!). One that will cover the bare essentials. One that will be a satisfactory defence shield on a bad day. Above all remember that by our communication we interact with all that is external. Without this we cannot be human. So communicate, respond, instigate, tell people:-) 

Written by Alison Lyddon (Spinal Cord Injury C4 incomplete) MSc, MCSP, FHEA. 

Published 26th August 2015

Comments

There are currently no comments on this post