My personal style of communication is inherently linked with the progressive nature of Friedreich’s Ataxia. That is to say, my style of communication is unique to me, as my experience of Friedreich’s Ataxia is unique to me. Some of the factors that affect my communication are dysarthria, nystagmus, severe vision impairment, hearing loss, severe loss of mobility, and other physical abnormalities. These prove to be intensely problematic in terms of my communication, and I have had to work around these factors when I try to keep up my conversations with people. In doing so, I have had to deal with the disappointments of various debilitating stereotypes, stigma, and disutilities which in fact have no basis in reality.
My ability to communicate has only exacerbated these problems. There are other factors that contribute to this stereotyping, that are also related to my disability. For example, problems with my throat, difficulty moving my lips to say something, or even drooling when I speak, lead many to make false connections with stereotypes that suggest I am less than normal.
Many take my speech problems at face value without realising that I am constantly working in resistance to the stereotypes. My physicality is such, that a lot of people depend on stereotypes and stigma to try and interpret what I am saying, because it is very difficult to understand me when I speak. And it isn’t getting any easier. My first symptoms of Friedreich’s Ataxia was noticed around the time I was seven years old. I am now 57 years old, and with the progressive nature of my disability, my communication is only getting worse.
The gradual loss of communication is something I have tended to fixate upon, because it is a very frustrating aspect of Friedreich’s Ataxia. But then I have found that in time people do get to know me and they appreciate that I am working against the communication problem that they don’t truly understand on first encounter.
I find that communication is also linked with other aspects of Friedreich’s Ataxia. An example of this is how my deteriorating communication is intertwined with my deteriorating sight. When I was better able to see, I used to be very particular about my clothing – it formed a sort of personal identity and expression, and was a big part of my life. Today, I depend on support workers to assist me with buying my clothes, and helping me decide what to wear on a day to day basis. Communication is so important here, as is trust and empathy, because I still like to have some control and say in what I wear.
In my past works I have written about how empathy can dismantle some of the problems faced by Friedreich’s Ataxia patients. It’s especially effective in the course of dealing with communication barriers.
The Wikipedia definition of empathy is as follows: empathy is the capacity to understand or feel what another person is experiencing from within their frame of reference, that is, the capacity to place oneself in another’s position.
For Friedreich’s Ataxia patients, the stereotypes and stigma associated with its physical qualities makes communicating a very frustrating experience. Often, people who try to communicate with me have misinterpreted what I say, and it will sometimes take a very long time for them to realise that. Other times, people have come to their own conclusions about what I need and have acted on their own accord on my behalf – this happens more often than not. Sometimes the person may get impatient, or agitated, when working out what I am trying to say takes too long.
Now of course I also know about impatience and agitation. From the side of the “FA sufferer” we have to develop patience and moderate our agitation when we confront those not understanding us. The question I have is how to enhance this much needed patience and calmness in the context of support for disability from both sides. If my condition has taught me anything it is about time – I realise that social interaction takes time. I’ve been increasingly aware of that all my life since contracting this condition in my early teen years.
Most of the time, empathy is an element that has to be discovered by the other person in communication; it is too easily a missing ingredient. It is important to listen to us before arriving at conclusions, to withhold judgment and defaulting into stereotypes. We need to be treated as equals. Most of all, I have found it is most important to remember that no two people are the same, and people with disabilities must be treated equally and individually.
I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.
You can also order directly from me.
Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer, my gratitude also extends to my phenomenal team of academic support workers. Firstly, team leader whose brilliance and courteous behavior has been a surmountable addition to my work, Christina Irugalbandara whose work means so much to me and Daniella De Bruin whose brilliant and caring nature means so much to me. Also, Ikemi Ivara whose ability to command and control the situation with kindness. Lastly but definitely not least Mercy Ndegwa who’s continually teaching me how to be a better person.