Clinical Enjoyments

It was a good day. I ran two sessions today. Both were successful, from my perspective. Of course there are always points for improvement (and I definitely take them onboard seriously) but in terms of the objectives I had set for each session, I was quite pleased at how they went. 

My first session was a speech intelligibility group, with three clients. In this group, there are two gentlemen - one is 73 years old, the other is 38 years old. I also have a lady, who is 50 years old. All of them had a stroke and consequently now have varying severity of language and speech disorders. As you might know, for most people whether you are right or left handed, the left side of our brain is the side that processes language and speech. All three of them encountered a stroke on their left hemisphere. Because their language and speech processing systems were damaged, they have both aphasia and speech apraxia. 

Both conditions are probably very unfamiliar to most people, unless you have them or have family members/friends who have them. Just to set the context, maybe I should explain a bit about the conditions most of my  clients have...  Aphasia is a language disorder that affects every aspect of language - understanding of spoken words, talking, reading and writing. E.g. my client might have trouble spelling at a one-word-level; or difficulty comprehending what someone is saying. Or reading might be very effortful at a paragraph level. The key thing to understand here is that aphasia is not just a difficulty in using language but it is also a difficulty in thinking. We might not realise this but we usually think in terms of language. Some of my clients reported that their ability to plan/reflect/know what they want to say or are saying is diminished. Their mind becomes somewhat 'blank' - languageless in an isolating sense. Almost as thought someone erased the blackboard in their minds. Or when someone says something to them, it simply doesn't quite register or click in their minds. 

Speech apraxia is a difficulty in planning and sequencing speech sounds. It is due to brain damage in the speech motor area. E.g. my client might say 'loung' instead of 'young', 'buflaytter' for 'butterfly', 'hhhhhandy' for 'handy'; 'defli' for 'definitely'. People with apraxia have difficulties initiating speech and in controlling sounds within words. Errors are very unpredictable. One moment it might be a bit better, in another moment, the sounds might not come out at all. E.g. sometimes if they want to say 'vest', the 'v' sound just doesn't roll out exactly when they want them to. But when they are not thinking about producing that sound, or if they are not trying hard to say that sound, the 'v' in 'vest' might come out smoothly and clearly. 

As you might imagine, aphasia and apraxia can be very isolating and frustrating. Relationships change. Work may no longer be possible. Communication becomes so difficult, it's tiring. To say that they make everyday, basic communication difficult is to understate the impact of their impairments on their daily lives, their self-identities and their loved ones. 

During our group sessions, we often discuss about issues surrounding coping and living with aphasia and apraxia. Today we spent two hours discussing strategies they could use to increase their listener's comprehension of their speech. Naturally, it led to a discussion about everyday barriers they face. These barriers may be external (e.g. strangers who interrupt them and do not give them time to speak; people who pretend to understand them when they obviously didn't, etc.); or internal (e.g. choosing not to talk to strangers due to low self-confidence; choosing to keep quiet during conversations for fear of judgement; embarrassment in stating upfront that s/he had a stroke so as to request for patience when communicating, etc.). We shared such a fruitful and engaging conversation. We laughed, shared, and listened. I was so pleased to see them spontaneously offering suggestions and being supportive to one another. Today, one of them said that the group sessions have helped him to feel more confident as a speaker outside of the clinic setting. :) In a way, over the past 12 sessions, I've seen them develop as a group. It's a lovely feeling being their therapist. 

What does 'disability' mean to you?

Shall we take a few moments and think.... what image comes into your mind when you think of the word 'disability'? What do you see when you think of that word? 

Someone who is blind? Deaf maybe. On a wheelchair? (That often comes up doesn't it?) With an illness? Possibly. Someone who probably needs quite a lot help or can't do basic things for him/herself? 

Years ago, a lady said this to me, 'You are a TAP.' 

'What? What does that mean?' I asked. 

'Temporarily Abled Person.'

That was something that started me thinking about how some of us tended to perceive ourselves and people with 'disabilities'. It's something that we don't usually talk about, if at all, because it can make people feel uncomfortable. Also, I guess if we don't see it, we just don't really think about it. 

One of the best, most important things I've picked up in my course is a refreshing, logical and ethical way of perceiving what 'disability' entails. It started with the World Health Organisation (WHO) who established that our old way of looking at 'disability' was way too simplistic at best and completely flawed at worst. We were missing the main idea of what it means for that person who is faced with an impairment - however temporary or permanent it may be. Previously, 'disability' was all about the person with the problem. It's his/her problem - deal with it. You are deaf because you have deafness. You have deafness because you are deaf. This is not only disempowering but it also sets up a consciousness that creates a false dichotomy between deaf and non-deaf; disabled and abled; non-normal and normal; you and us. But something's missing in this equation. What role does society play? Surely, I am 'disabled' as far as society 'disables' me as well? 

I may be say, on a wheelchair. But if no structural provisions are available around me to allow me to be independent (e.g. buses that accommodate me, MRT with lifts, buildings with ramps), now surely that disables me?  Taking another example of a person with deafness. The impairment is that this person can't hear certain sounds at a certain range of frequency. Perhaps s/he was born with a cochlear dysfunction. (FYI, it's very rare for a person to be completely deaf. People with deafness can hear but usually at a restricted range of frequencies and need sounds to be amplified.) But, according to the WHO (and to common ethical sense really), this is only a partial definition of his/her 'disability'. The other half of the equation - i.e. societal barriers - is equally important, if not more so. In other words, if he/she is denied access to a hearing aid or cochlear implant, denied admission to mainstream schooling or equal opportunities at work, then it is not that this person is disabled, but this person has been disabled. It is probably a reflection of social and cultural progress when people within the society are able to see beyond a person's impairment as 'his/her problem'; but to be attuned that 'disability' has many dimensions to it - of which you and I are a part of. 

the diving bell and the butterfly

An ordinary day. At seven the chapel bells begin again to punctuate the passage of time, quarter-hour by quarter-hour. After their night's respite, my congested bronchial tube once more begin their noisy rattle. My hands, lying curled on the yellow sheets, are hurting, although I can't tell if they are burning hot or ice cold. To fight off stiffness I instinctively stretch, my arms and legs moving only a fraction of an inch. It is often enough to bring relief to a painful limb. My cocoon becomes less oppressive, and my mind takes flight like a butterfly. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court. You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realise your childhood dreams and adult ambitions. 

I've just finished reading this wonderful true life story by a man whose only means of communication is to blink. One blink means no; two blinks mean yes. Bauby had 'locked-in syndrome' since his brain stem stroke, a condition that made him a quadriplegic - trapped in a motionless body but alive with a beautiful mind. For the past two weeks, Bauby was with me as I entered his world on the tube. I read each word in a way I don't usually do for novels, as I realised how much effort it must have taken for him to express each and every letter. This was a young chap (father of two young kids) whose life completely misfired all of a sudden, yet he could reflect all of life's misgivings with such wry humour that made me smile and sigh at the same time. He communicates using an alphabet board. Not a usual ABC sort - but one that arranges letters according to the frequency of its use in the French language. So the 'listener' has to read out each letter on his board and watch out for his blinks that will indicate 'Stop, that's the letter I want'. And together, both Bauby and the listener spelt out and inferred what he wanted to say. 

Humour might get lost through this exchange, but it was the only thin thread through which Bauby was able to maintain his connection to the world that forgot him too easily. It's a Conversation in which was unsaid probably said more. The alphabet board was set up by his speech and language therapist actually. In a lovely way that reminds me of how meaningful my job will be, Bauby blinked:

The identity badge pinned to Sandrine's white tunic says 'Speech Therapist', but it should read 'Guardian Angel'.