My experience as a person with communication disability and why we have a long way to go
I like to think that everyone’s conversations are important, regardless of the way they communicate it.
I usually communicate with an eye-gaze board which has each letter of the alphabet printed onto it. I spell out what I want to say by looking at each letter. I feel this method is the most effective way for me to talk to people.
I use this system because it requires my communication partner in the conversation to really engage with me. It feels personal and I have their complete attention. Yes, this method takes some time, however when someone makes the effort to use my eye-gaze board with me, I know that a person really wants to have a conversation with me.
I represent the 4.4 million Australian people with disability, who are people and customers no different to any other. Just like any other customer, we wish to be made to feel welcome by staff, and that staff truly value our business. After all, money is money, no matter who pays.
Research released a few years ago from disability support service Scope suggests that Australians still have a long way to go in bridging this gap, particularly for those with communication disabilities.
Based on 100 in-depth interviews with people with a disability, and a survey of 1,000 Australians, the research showed that Australians are reluctant to converse with people with a disability with 40% saying they simply don’t know how to, and two in five worried they will offend the person.
Highlighting the stark gap in understanding, four in five Australians believe it’s best to direct their conversation to a support person, rather than to the individual. On the other side of the coin, people with a disability say this makes them feel frustrated, worried, and lonely.
As a person with communication disability, I can see the different way I communicate occasionally makes people feel uncomfortable. I can understand that if someone doesn’t have any experience, training, or awareness of the range of disabilities that exist, they will feel uncomfortable. However, with the knowledge that there are over 1.2 million people with communication disability, using ignorance to justify not talking to or including people with disability is no longer acceptable. I believe we can do better.
I live independently, and navigate my life in a very similar manner to most Australians. I pay my bills, I do my banking, I catch public transport, I listen to talk-back radio, and I am a die-hard Carlton supporter – although please don’t hold that against me.
I spend many hours in my life observing people. People-watching is one of my favourite things to do, which is fortunate, as I spend a lot of time sitting around waiting for people and things to happen in my life.
I am particularly interested in watching the behavior that people display towards people with communication difficulties. I am convinced that the behavior displayed by a person is directly related to their attitude. By watching people, you can see some of their attitudes become visible in their actions and behaviour. I watch – and although the person I am observing may think I understand nothing, I understand everything.
Because attitudes play such an important role in either enabling or disabling a person’s full participation in society, I am passionate about educating people to change and challenge their own attitude towards people with communication disabilities.
From pity, awkwardness, low-expectations about what people with disabilities can contribute, to downright fear – I have heard and experienced it all, and know that stereotypical or negative attitudes hold not only people with disabilities back, but also damage those who hold these negative attitudes.
I used to be a customer of a bank, one of the big four. I had got to know who the regular bank staff were at my local branch, and through my own determination and perseverance, they got to know me and how I communicate.
All of a sudden there was a new manager, and staff were leaving weekly. And with the old staff went all of my hard work building an understanding of my communication needs with them.
Again, I began my journey to educate the new staff about me and how I communicate. One day the branch manager walked up to me in the store, after I had tried and failed to communicate with a teller. The manager started to ask me questions like “what is your carer’s name?” and “can I have the phone number for your carer?”
The manager did not know how to communicate with me using my method of communication, so all I could do was ‘think’ my response. I wanted to tell her that it was not appropriate to request my private information to contact someone on my behalf.
I was eventually escorted by security and was given a lifetime ban by the bank. I was humiliated and felt misunderstood.
With International Day of People with a Disability round the corner, I’d like to call on Australians to undertake disability awareness education as well as explore accreditation in Communication Accessibility at a business level to ensure they are ready to welcome people with a communication disability. Scope offers a great resource for businesses to learn more about this.
We know the issues. We know the themes. We know that we, as a compassionate Australian society, need to change.
How refreshing would it be to change the conversation from describing the problem, to enabling the solution?
International Day for People with Disability (IDPwD) is held on 3rd December each year. It aims to increase public awareness, understanding and acceptance of people with disability and celebrate their achievements and contributions. The theme for this year is “Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world’.
Brandon Tomlin is a communication access assessor for disability support service Scope. This article was originally published in Herald Sun on Dec 6, 2017.