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Conference of States Parties (COSP12), United Nations, New York
Side Event 12 June 2019 (8:15-9:30am)
People with communication disabilities speak up for inclusion and participation:
How the implementation of the CRPD and SDGs can support this right
UN TV broadcast: http://webtv.un.org/search/people-with-communication-disability-speak-up-for-inclusion-
and-participation-how-the-implementation-of-the-crpd-and-the-sdgs-can-support-this-right-cosp12-side-
event/6047514452001/
International Communication Project: https://internationalcommunicationproject.com/2019/05/international-
communication-project-event-united-nations/
Speak Up for Communication Rights
Professor Sharynne McLeod, Charles Sturt University (smcleod@csu.edu.au)
Distinguished Delegates of States Parties and Civil Society
It is an honour to be speaking up for communication rights at the United Nations.
Today I will speak about 4 topics: communication rights, invisibility, impact, and solutions.
1. COMMUNICATION RIGHTS
As you know, last year the United Nations celebrated the 70th anniversary of the Universal Declaration of
Human Rights (UDHR, UN, 1948). This declaration is the foundation for all other UN declarations and
conventions, including the Convention on the Rights of Persons with Disabilities (CRPD, United Nations, UN,
2006) that is the focus of Conference of States Parties 12 this week.
Last year, I was privileged to be the editor of the special issue of the International Journal of Speech-Language
Pathology to celebrate communication rights, particularly Article 19 of the UDHR (McLeod, 2018).
The special issue received international support, as these photographs demonstrate. Every one of the 31 articles,
written by people from 16 countries, relate to the COSP12 subtheme of awareness raising.
There are free copies available today – and it is also freely available online
https://www.tandfonline.com/toc/iasl20/20/1
[16 countries - Australia, Belgium, Canada, Fiji, Ireland, the Netherlands, New Zealand, Portugal, Rwanda,
Saudi Arabia, Shetland, South Africa, Sweden, Syria, UK, and USA]
Article 19 of UDHR states
Article 19
EVERYONE has the right to freedom of opinion and expression;
this right includes freedom to hold opinions without interference
and to seek, receive and impart information and ideas
through any media and regardless of frontiers. (UN, 1948)
Professor Sharynne McLeod, Australia
smcleod@csu.edu.au
1
Article 19 of the UDHR is often interpreted in the context of freedom of speech, freedom of the press, and
freedom to protest. As Emily Howie (2018) from the Human Rights Law Centre wrote in the special issue:
“freedom to express opinions and ideas is … a foundation stone of democratic society” (Howie, 2018).
“Free speech is a necessary precondition to the enjoyment of other rights, such as the right to vote, free
assembly, …freedom of association, and … press freedom” (Howie, 2018)
The Australian Human Rights Commission wrote in the foreword: “The right to freedom of expression and
opinion is like air, food or water: we take it for granted until it is denied to us” (McEwin & Santow, 2018; p. 1)
Communication is a human right for everyone – including those with communication disability.
This is recognised in Article 21 of CRPD that elaborates Article 19 of UDHR.
Article 21 – Freedom of expression and opinion, and access to information
“States Parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right
to freedom of expression and opinion, including the freedom
to seek, receive and impart information and ideas on an equal basis with others
and through all forms of communication of their choice,
as defined in article 2 of the present Convention…” (UN, 2006)
and it continues to describe this right in more detail.
Article 2 – Definitions
For the purposes of the present Convention:
“Communication” includes languages, display of text, Braille, tactile communication, large print, accessible
multimedia as well as written, audio, plain-language, human-reader and augmentative and alternative modes,
means and formats of communication, including accessible information and communication technology;
“Language” includes spoken and signed languages and other forms of non spoken languages;
2. COMMUNICATION INVISIBILITY
Now let’s take a moment to define communication and consider my second point about invisibility.
The primary modes of communication are speaking, listening, reading, and writing in the dominant language of
the community.
If you bought a cup of coffee this morning it is likely you… engaged in speaking to the barista, the wait staff
listening to you, you reading the menu, and the wait staff writing your order in English (the dominant language
of the US).
If we expand our definition of languages to add sign language, Braille and augmentative and alternative
communication (AAC) articulated in Article 2 of CRPD (UN, 2006) we add in: signing, looking, feeling, and
typing
In this International Year of Indigenous Languages, we need to think about communication in ANY
LANGUAGE “regardless of frontiers”. Therefore, there are many more dimensions to communication. For
example, speech includes speech sounds, intelligibility, voice, fluency; and language includes vocabulary,
grammar, sentences, and discourse (McLeod & McCormack, 2015). If you have difficulty with these areas, you
may have a communication disability.
Whether you speak more than one language or only one language, you have a similar chance of having a
communication disability; but multilingual speakers may have educational and occupational advantages (Blake
et al., 2018; McLeod et al., 2016)
Professor Sharynne McLeod, Australia
smcleod@csu.edu.au
2
Can you work out which of these people in the photograph have a communication disability?
No? Because communication disability is often invisible.
A few people with communication disability have a known cause. For example, people who have hearing loss,
developmental disability, cerebral palsy, cleft palate or autism (however, not all people who have these
conditions will have a communication disability) (McLeod & Baker, 2017).
Even today, 12th June 2019, some people in the world will develop a communication disability because of: a
stroke, brain injury due to a car accident, being diagnosed with a brain tumour, Alzheimer’s disease,
Parkinson’s disease, cancer of the larynx, or something else that either immediately results in having a
communication disability, or may mean that they will in the future. Hopefully this will not be someone you
love.
I have seen first-hand the tragedy of the impact of losing the ability to communicate, since my mother had early
onset Alzheimer’s disease, and my father had Parkinson’s disease. We worked hard to support their
participation in family and community life.
The UN has supported people with communication disability.
However, NOT ALL people with communication disability are included in prevalence estimates and initiatives
to uphold communication rights (McLeod, 2019; McLeod, McAllister, Harrison & McCormack, 2014). The
World Report on Disability acknowledged that “people with. . .communication difficulties…may not be
included in these estimates [of disability], despite encountering difficulties in daily life” (WHO & World Bank,
2011, p. 22)
Most children have communication disability as a primary disability. They can be invisible and forgotten in
government policies (McLeod, Press & Phelan, 2010); however, the impact of their communication disability is
profound. Here are some children with communication disability as a primary disability who were involved in
our Sound Start Study research (and gave us permission to use their photos) (McLeod, Baker, McCormack,
Roulstone & Wren, with Crowe & Masso 2015-2017)
Children with communication disability as a primary disability may have speech sound disorder, childhood
apraxia of speech, developmental language disorder, stutter, or voice disorder. In a longitudinal study of 14,500
school children in Australia, we found that 13% of children had a communication disability. This was 3 times
more than those with hearing loss, intellectual and medical disabilities combined (McLeod & McKinnon, 2007).
3. COMMUNICATION IMPACT
Last month the American Speech-Language-Hearing Association (2019) featured research indicating one
quarter of 1,000 parents of children aged zero to eight (0-8) years had concerns about their child’s ability to
communicate. Their findings mirror research we have published over 4,000 children from the Longitudinal
Study of Australian Children. We also found that 25% of parents were concerned about their child’s speech and
language (McLeod & Harrison, 2009).
These children with speech and language concern were significantly more likely to have ongoing difficulties
with reading, writing, spelling, grammar, AND numeracy in grades 3, 5 AND 7 (indicated by the orange lines)
compared with typically developing children (indicated by the red lines) (McLeod, Harrison & Wang, 2019).
(also see Harrison et al., 2009; McCormack et al., 2009)
They were more likely to be bullied at school, and less likely to have friends (McCormack et al., 2009).
Professor Sharynne McLeod, Australia
smcleod@csu.edu.au
3
Indeed, other researchers found that people in jails and the justice system have a high prevalence of
communication and literacy disabilities (Martin, 2018; Snow & Sanger, 2011).
The impact of communication disability on adults (such as people who have had a stroke) was eloquently
described by Professor Deborah Hersh in the special issue. She stated “Aphasia can rob people of their
“freedom of expression” at a fundamental level, threatening their identity, and disrupting their ability to
demonstrate competence, share experience, and participate in life as before” (Hersh, 2018, p. 40)
4. COMMUNICATION SOLUTIONS
Now let’s turn our attention to the final part of my presentation: innovative international solutions; by
highlighting some of the work that is profiled in the special issue. I will use the sub-themes for the round
table discussions at COSP12 as my framework.
1. Sub-theme 1: Technology, digitalization and ICTs for the empowerment and inclusion of persons
with disabilities
Professor Bronwyn Hemsley and colleagues (2018) described how they supported people who used
augmentative and alternative communication (AAC) devices to participate in conversations across the world
using Twitter. This morning, we are fortunate to have Meredith Allan and Miles Forma to present, who can
testify to the important positive difference AAC devices make in people’s lives.
Professors Linda Worrall, Miranda Rose and team have used technology to create wearable devices to support
communication for people with aphasia. The team have created CommFit, similar to a pedometer, to track
talking (Brandenberg et al., 2017b) as well as other devices (Brandenberg et al., 2017a; Bryant et al., 2013).
2. Sub-theme 2: Social inclusion and the right to the highest attainable standard of health.
The International Communication Project, as Gail Mulcair described, has affiliated partners from over 50
countries that support the life-changing work of communication specialists including speech-language
pathologists, audiologists and advocates (Mulcair, Pietranton & Williams, 2018).
Members of these associations have many rigorous evidence-based solutions for reducing impairment and
increasing participation for people with communication disability (e.g., Baker & McLeod, 2011; Dollaghan,
2007).
The special issue includes communication rights driven solutions in South Africa (Pascoe et al., 2018), Saudi
Arabia (Khoja & Sheeshah, 2018), outback Australia (Jones et al., 2018), and Fiji (Hopf, 2018).
For example, Dr Suzanne Hopf (2018) describes her comprehensive research in Fiji to develop the respectful
and inclusive 4-stage Communication Capacity Research model.
Dr Julie Marshall and Helen Barrett (2018) describe their work with the United Nations in Rwanda to uphold
the human rights of refugee-survivors of sexual and gender-based violence with communication disability.
3. Sub-theme 3: Inclusion of persons with disabilities in society through participation in cultural life,
recreation, leisure and sports
Remember our earlier consideration of the communicative effort to order a cup of coffee. Dr Clare Carroll and
team from Ireland have developed a program for working with staff in coffee shops and restaurants to enable
people with complex communication needs to order their own food and drinks. They wrote “his mother was so
shocked that he had the ability to order for himself…”.
Professor Sharynne McLeod, Australia
smcleod@csu.edu.au
4For children with communication disability, participation in leisure often occurs in the playground.
Professor Jane McCormack and colleagues analysed submissions to a Government Senate inquiry. One
submission stated: “When I was at school, I can remember spending every lunch time sitting by myself because
no one will even try to talk to me” (Submission to Australian Government Senate Inquiry, 2014 – McCormack,
Baker & Crowe, 2018).
This comment resonates with work our research team undertook to listen to 143 4- to 5-year-old children with
speech sound disorder (McCormack et al., 2010; McLeod, McCormack, McAllister, Harrison & Holliday,
2011). We asked them to draw themselves talking to someone.
One boy drew himself alone. When we asked him again if he could draw
himself talking to someone he said “No” “They won’t let me play”.
Getting back to the paper by Professor McCormack; many people with
communication disability want to contribute to society, as one person wrote
“I believe that even though we are only children we can still really make a
difference in the world.” (McCormack et al., 2018).
Looking back at our drawings, many of the preschool children indicated
that they needed someone with large listening ears. As you can see in each
of these drawings – they have large ears on the person they are talking
with. These listeners were friends, family (McLeod, Daniel & Barr, 2013),
teachers (Wang et al., 2018), and people like you (McCormack, McLeod &
Crowe, 2019).
Communication disability is often invisible. However, solutions abound. There is much that can be done to
reduce the impact, and to enable people to fully participate in society.
I invite you to lessen the invisibility of people with communication disability. I invite you to: “acknowledge”,
“adjust” your communication, and “take time” (McLeod, 2018) to use your “listening ears” as we seek solutions
to support inclusion and participation of all people – to change communication disability to communication
ability.
Biography: Professor Sharynne McLeod, PhD from Charles Sturt University in Australia is an elected Life Member of
Speech Pathology Australia, elected Fellow of the American Speech-Language-Hearing Association, author of 10 books
and 200 peer reviewed journal articles and book chapters. Her Multilingual Children’s Speech website has free resources
in over 60 languages. In 2018, she was the editor of the special issue of the International Journal of Speech-Language
Pathology celebrating communication rights and was named Australia’s Research Field Leader in Audiology and Speech-
Language Pathology.
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Professor Sharynne McLeod, Australia
smcleod@csu.edu.au
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smcleod@csu.edu.au
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Delegates at the Speech Pathology Australia national conference speaking up for communication rights
Professor Sharynne McLeod, Australia
smcleod@csu.edu.au
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