Raising Stuttering Awareness on December 3rd, 2020
International Day of Disability is today, December 3rd 2020. The day represents the value of the global community diversity; learning to understand the experiences of people with disablities (PWD), optimism towards the future – a world where a person is not characterized by their abilities and finally – action of individuals and organizations to show their support and take on a commitment to create a world characterised by equal human rights for all (United Nations, 2020). In addition, IDPWD 2020 focuses on hidden disability and the effects of COVID-19 on PWD.
Stuttering and disability
What has this got to do with stuttering, you may ask? Well, stuttering can be defined as a disability. Disability has been defined in different ways throughout history and different models have been put forth to explain these definitions. According to the medical model of disability , stuttering would be defined as a speech disorder that needs to be ʺcuredʺ or ʺfixedʺ by professionals, such as speech and language pathologists and therapists (Retief & Letšosa, 2018). The social model defines disability as happening at the intersection of personal impairments and an inaccessible environment. People who stutter (PWS) have limited and often no real access to certain types of communication technology, such as automatic answering services, Google assistant, Siri and the like, which are becoming more widespread in the digital world of today (Wheeler, 2020). These services have as of yet, limited ability to understand or ʺreadʺ dysfluencies in speech, creating barriers for PWS.
Building on inherent human dignity, The human rights model of disability defines disability as a natural part of human diversity that should be respected and supported (Lawson & Beckett, 2020). Assuming that PWD have the same rights as everyone else in society, the model puts the responsibility on the shoulders of decision makers, institutions, corporations and organizations to ensure that impairment is not used as an excuse for denying or restricting people’s rights. While technological advances take time, according to the human rights model of disability, PWS can request that communication services, requiring the input of speech, be made available and accessible to all, regardless of severity of stuttering.
Speaking about Stuttering
While not everyone feels comfortable being open and upfront about their stuttering, I believe it is important that we encourage a discussion around stuttering and the challenges PWS face around the world. If PWS feel similarly around stuttering below the surface, on a global level, could it be that this is caused by our environment? Stamma, the British Stuttering Association has worked with Wikipedia to change the language around stuttering. They also launched a media campaign this fall about the words used to describe stuttering, criticising the usage of negative terms such as ʺdefectʺ and ʺsuffering from stammering/stuttering“ and offering the more neutral terms: ʺtraitʺ and ʺhas a stutterʺ.
This is in line with the human rights model of disability, defining disability as a natural part of human diversity that should be respected and supported. Too often, PWS get pidgeonholed, but PWS come in all shapes and sizes. Perhaps we can take the opportunity today, to share our unique experience with the world and define our own stuttering ourselves.
Sam, chair of the World Stuttering Network Youth Committee, recently wrote two poems about stuttering at 10 years old, with the second one reframing the often negative discussion around stammering/stuttering (Stamma, 2020). He has explained that he doesn‘t suffer from stammering, on the contrary, he ʺrocks his stammering.ʺ
Pandemic Challenges and Opportunities Surrounding Stuttering
With the pandemic affecting us all in one way or another, disrupting normal life and in some cases leading to feelings of isolation, powerlessness, worry and even depression, there has perhaps never been a more important time than right now, to bring our experiences as PWS to the surface. Many have lost their jobs or have had to work remotely, often with the expectation to do more tele- and videoconferences. Speech therapy and stuttering self-help might be less available on site as well. While the increased flexibility might be working out for some, it can pose a challenge to others, who might participate less in different speaking related activities as a result. Face masks can provide a hindrance to effective communication, where the listener can‘t see our mouth, while others might find it a relief not to need to put the stuttering on public display.
What is your experience? How can we as a world stuttering community build an inclusive environment where PWS feel seen and heard during COVID-19? How can we work together to develop a new stuttering iceberg?
Other important Links:
UN General Assembly. (2007). Convention on the Rights of Persons with Disabilities (CPRD).