Barriers to Communication: Part 1

Barriers are a part of life, and unfortunately, if you have a disability, barriers crop up regularly in day-to-day life. There are multiple barriers that disabled people face, but today, I am going to focus on the communication barrier that I have to deal with and overcome daily…

If you are a regular reader of Brains on Wheels (if you’re here for the first time, welcome!), you may know that I have a speech impairment caused by my CP. My CP affects every muscle in my body, including my tongue, throat and jaw muscles, and as a result, my speech isn’t clear; I wouldn’t say I like this phrase but my speech can be described as A-typical. I dislike that phrase because it is like saying abnormal, but let’s leave that debate for today…

The first barrier to communication that I face is the language barrier. Since moving into my flat, from the beginning, I have struggled a huge amount with language barriers. I’m not saying that everyone is, but, in my experience, most live-in carers come from different countries and don’t have English as their first language, making communication difficult for both parties. This barrier is exacerbated by my speech impairment; with my speech being the way it is, even people with English being their first language struggle to understand what I say if they don’t know me, so I take my hat off to live-in carers who work with me. I totally understand that it is difficult to communicate with me in these circumstances.

I am usually quite patient with everyone if they are prepared to try as much as it takes, but I have had some who just can’t or don’t understand me at all, and that frustrates me big time! When they talk over the top of me or look at me with a blank expression and give up straight away, that’s when I get annoyed. Without seeming like I’m being prejudiced in any way, and from a practical point of view, I have found that I have more problems communicating with those from Hungary and most of the countries in Africa.

Each time I had a carer from Hungary, communication was virtually a non-starter because they just couldn’t understand my speech at all. Even spelling is difficult. I first noticed a major hurdle with the Hungarians not knowing the English alphabet when I was spelling a word out, and I asked the carer to write the letters as I said them so that I could make sure that she understood. I said “S” and she wrote “C”. At that point, I was extremely confused as to why she was writing something completely different from what I had actually said. The last Hungarian carer I had explained to my parents and me that their alphabet is simpler than ours because C can have any sound ranging from sounds “See” to “S” to “cuh”, whereas the Hungarian alphabet is more rigid as in if you have the letter C, the sound can only be “cuh”. As I have had this kind of problem several times, I have invested in a magnetic whiteboard and letters, so that they can write on that and rub it out, as well as enabling me to spell words out with the magnetic letters when they don’t know which letters are which.

Moving onto African countries, I find it extremely difficult to communicate with people from Africa. There is a simple explanation as to why this is: apart from their accents (which are also difficult to understand), and I know that this is probably cultural, but in my experience, people from this part of Africa have overly loud voices and when they don’t understand what I have said, they get louder each time I repeat until eventually I can’t cope with the loudness because I perceive them to be shouting and it’s just too much. I can’t process what they’re saying because they’re too loud and can’t focus. When I talk, I can’t be heard anyway because they’re shouting over the top of me… I have been known to burst into tears and tell them to go away because of this. I hate that I do this, but in the moment, I don’t know what else to do! When I had calmed down, I wrote an explanation as to why I acted like that. I have had two carers who are from South Africa and their first language is English, and I had no problems at all with communicating with them.

Ever since I learned to talk, we have developed a strategy for when someone can’t understand certain words; I spell words out. This works well until the person doesn’t know the English alphabet. I have managed to learn the NATO Phonetic Alphabet and this helps a lot because when I say letters which sound like different ones, people get confused as my speech makes some letters sound the same. The phonetic alphabet eliminates that problem because it was first developed to help radio communications by designating a specific and distinctive word to each letter of the English alphabet; for example, A is Alpha, B is Bravo, and C is Charlie, and so on… The problem with this is the fact that not many carers know the phonetic alphabet. When they know the phonetic alphabet, it makes it much easier to communicate. I have had a few carers who could not even understand simple words, and this is incredibly stressful.

Since writing this, I have had a sheet of paper with the phonetic alphabet printed and laminated, thanks to my mum. I have one in the living room, one in my bedroom, and one in the bathroom. I also bought two more whiteboards and hung them below the phonetic alphabet.

As I’m writing this, I can see that if I don’t split this blog post up, it is going to end up being too much information to read because I still have a lot more to say on the subject of barriers to communication. So, with that being said, I hope you have enjoyed reading this, and I will see you for the second part tomorrow.