The relationship between Dysarthria and individual communication aspects of Friedreich’s Ataxia

Dysarthria is a motor speech disorder resulting from neurological injury of the motor component of the motor-speech system and is characterized by poor articulation of phonemes. In other words, it is a condition in which problems effectively occur with the muscles that help produce speech, often making it very difficult to pronounce words. It is unrelated to problems with understanding language (that is aphasia), although a person can have both. Any of the speech subsystems (respiration, phonation, resonance, prosody, and articulation) can be affected, leading to impairments in intelligibility, audibility, naturalness, and efficiency of vocal communication.

To try to focus on the ugly reality of Friedreich’s Ataxia, along with the term and phrase dysarthria will have many confused. Meanwhile, those suffering from the condition find it increasingly difficult to engage in meaningful communication about their condition.

And so, those of us suffering from this blight, find ourselves baring the brunt of stereotype, stigma and presumed lack of ability. Our place in the economy is defined by our “disutility”.

But there is no doubt we can still achieve. In my own case, my achievements have been considerable, but there is still the possibility of further and ongoing achievement, as there is with all who have to battle with Friedreich’s Ataxia. The following is taken from a journal article I authored with Prof. Adam Vogel in 2013

“When I finished my PhD, there was a demand for speaking at conferences, but I never could. I used to have someone else read out my papers. It was hard for me to socialise and make connections within academia because of my slurred speech. This also resulted in people thinking that I had a cognitive disability, and hence treating me in that way. Therefore, I have to rely heavily on typing, but this is difficult due to my typing speed of 1 word per minute.”

Today, things have got a lot worse for me. The impact of Friedreich’s Ataxia and the numbing impact of dysarthria means there is only a few people who can understand my voice and I must type using my extremely limited hand movements to maintain my communication. Also, being blind through nystagmus leaves me pretty well incapable of typing as I once did.

Currently, I am undergoing trials for future equipment to ameliorate my communication problems. In 2016, I wrote a personal story for John Menadue’s blog which described my response to these challenges:

“…the most damaging to me is the deterioration of my speech. There is no doubt that every diagnostic implication of this disability severely impacts my life and with it the important need to communicate. For me communication is the nucleus from which I attempt to attain my goals.”

The independence of Friedreich’s Ataxia

Friedreich’s Ataxia today has made it extremely difficult for me to do more than one thing at a time. For example, my academic work has become my most promising outlet and maybe due to this factor everything else gains less attention. To put it simply: I’m wondering whether my disability makes me look very eccentric, but from my knowledge of Friedreich’s Ataxia and how it has impacted me, I am confident that this is not the case.

But the impression of “eccentricity” nevertheless creates many problems within the shared supported accommodation where I live. The facility is critically under-staffed and because of the dominance of abstract efficiencies an unfortunate situation may too easily arise.

Let me explain this by another quote from my article for John Menadue’s blog titled The Standardization of Services for People with Disabilities,

“There are many residents, perhaps an overwhelming majority of up to 80%, in supported accommodation with some form of intellectual disability. Therefore it can be expected that in shared support accommodation like the place where I reside, that a policy of taking on such high demand people will simply result in a standardization of disability care for many service providers. And don’t get me wrong. Such people are also my neighbours and deserve proper care. But by putting all disability together in one facility, even if there are different classifications on paper in a provider’s policy documents, there will be an inevitable drive toward standardized care and abstract efficiency, that may allow the provider to continue its “service provision” rather than actually looking to the individual care of people with disabilities.”

For example, my struggle with Friedreich’s Ataxia has given rise to some very individual aspects of my person and my contribution. These are somewhat different from what other people with other disabilities experience. I have an ongoing need to communicate and to be communicated with. It’s what keeps me going. But this deep-seated need regularly raises predicaments for me that I judge to be deeply unfair. And then the stereotypes, stigmas and ascription of disutility seem to follow as night follows days. The inability to properly communicate and to be adequately communicated with seems to me to be Friedreich’s Ataxia’s most devastating assault upon my person. I keep writing these things because I’m determined to be understood.

So please indulge my efforts and let me know that you appreciate what I have tried to say here. I’ll be delighted to hear from you!

I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.

The book can be purchased from Amazon as a paperback or in kindle ebook format. It can also be purchased from Foyle, or Fishpond for Australians.

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, 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.