The Right to Be Heard: Reclaiming Communication, Competence and Control

Ben and his supporters

Written by Ben Kingston

The right to communicate has often been the subject of controversy for non-speaking individuals like myself over the years.

It is pleasing to hear that individuals are choosing to empower themselves with their own choice of communication strategies that work for them, rather than be dictated to by professionals, academics or government funding bodies.

Looking to the future, I hope that this control from individual choice will continue to move forward for us, as it is no longer sufficient that control is taken away and vital decisions are made for us without consulting us.

On the subject of control, it’s problematic to assume from the perspective of the individuals without speech that they are in full control when they are so highly dependent on others for their day-to-day needs.

I’m very dependent on my Mum for my survival needs but I’m also dependent on her for my communication needs to make daily requests and for her to give me the opportunity to communicate the things I’m needing to say.

This opportunity to communicate is just as important as the communication systems themselves, as I would not be able to communicate my thoughts if Mum and others in my life did not believe that I had something to say.

I’m so fortunate that I’ve been given these opportunities to communicate from an early age, as this is sadly not common for many individuals without speech.

So how do we provide these opportunities?

This requires a paradigm shift for professionals and families to have access to resources and advocates who can demonstrate that, with the appropriate communication systems, non-speaking individuals can thrive in the right supportive environments.

Opportunities cannot happen without support and support cannot genuinely happen without the right mindset, which is where problems start arising – like old and outdated beliefs about non speaking individuals.

These old paradigm beliefs continue to persist to this day and in the professional domain they are very damaging and restrictive to us.

In order to accommodate the new paradigms we must take into account the lived experience of non speaking individuals.

Family members can also provide valuable information for research. I’m hoping to make some difference in the lives of non-speaking individuals by writing from my own lived experience to educate and inform the community about Augmentative and Alternative Communication (AAC). I’m very passionate about this, because I’m sure that there are many individuals who are being denied the right to communicate by either uninformed families or by professionals who are not well equipped or have preconceived notions about the competency of non-speaking individuals.

Such attitudes create a self-fulfilling prophecy that limits individuals for the rest of their lives. This is a tragedy and a violation of human rights and the right to communicate one’s thoughts and feelings.

This has to be stopped but it will take an enormous grass roots action to talk to government bodies which are making decisions about disability policy.

I’m convinced that we can’t just sit around and expect the government to do things for us. We must drive this new movement ourselves, by going directly to the government representatives to tell them our stories and lived experiences.

They need to know that – with the necessary support to access AAC strategies – non-speaking individuals can show ourselves capable of working and contributing to society, rather than being trapped in our bodies and stuck in our homes, isolated from our communities.

How families and carers can support non-speakers

• It’s important for family members to be committed to supporting their individuals to learn and practice whatever the chosen strategy is. People in the family firstly must shift their paradigm in seeing their individual as potentially a competent communicator not as a helpless person. I’m emphasising this principle known as the presumption of competence because it must be the underlying foundation underpinning any communication method with non speaking individuals like myself. People who are non speakers for too long have been judged to be incompetent and intellectually disabled by merely making assumptions about our appearance or behaviours. It’s not a case of us not understanding but not having the tools to communicate our understanding. It’s therefore about doing away with these old paradigms and making room for a new understanding to emerge.
• The next step is for families to talk to and treat their non speaking individual in the same way as speaking individuals in their family. Parents need to create a communication rich environment in the home with visual communication displays and devices everywhere that are easily accessible to their individual and they need to model practice and encourage communication on a daily basis. They need to understand that communication is a lifelong journey for all of them with many challenges along the way but they must persist through these challenges to reap the rewards.
• People in the family must find other non-speaking individuals who are successfully using communication systems so that they can get support and feel that they are not alone on the communication journey. It’s also really important for families to share and recommend the professionals who are very skilled and experienced in working with non-speakers as this will save them a lot of stress in trying to sift through the minefield of professional support that is out there.
• Openness to receiving different professional opinions is also important as no one person will have the total picture so don’t take a professional’s word as gospel and if they are rude or dismissive then feel free to get a second opinion.

I’m finally wanting to emphasise that there is no one superior communication strategy or device as it all depends on what is best suitable for that particular individual.

It’s more important for a non-speaker to have several different strategies displays and devices so they can use the most effective strategy for a particular situation and not be dependent on only one device or strategy that may not always be appropriate for the situation, so a toolkit of different strategies is essential.

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