Find a transcript of this event on 29 October 2020.
Recently in South Africa, Nathanial Julies, a 16 year old boy with Down Syndrome was killed by police in Eldorado Park, Johannesburg. While the killing was unjustified on many levels, one of the main reasons cited for the shooting was that he was unable to respond to questions when asked.
People with Down Syndrome frequently have communication difficulties relating to the anatomical and physiological presentation of the condition. In South Africa there has been a huge societal and governmental failure to meet the social, educational and rehabilitation needs of disabled children and provide support to transition into becoming valued adult members of society. This effect can be amplified in lower income areas , where people are often not well understood in their communities and many parents have to fight for inclusion of their children.
It is no surprise that within this framework of institutionalized neglect, even in countries like the United States, disabled people, especially those with autism and mental health conditions, struggle to meet understanding in institutions like the criminal justice system. This issue was also brought to light in the Life Esidimeni tragedy in recent years which demonstrated the extent to which disabled people can be mistreated in society. On criminal rights, one organization in the USA has created an app, to assist first responders to identify people with special needs and as well as calls for a more collaborative approach to policing to meet the rights of people with disabilities. Like the criminal justice system, this kind of collaboration is needed at all levels of society to improve acceptance and quality of life of people with disabilities in South Africa.
Twitter Chat
Questions for Participants:
T1: Why do you think society has such an uncomfortable relationship with the idea of disability?
T2: What are some of the ways that society fails to meet the needs of disabled people and their families at present?
T3: What are the things that society can start doing right now to meet the needs of disabled people more favourably?
T4: What can disabled people, their families and supporting organisations themselves do to effect change?
T5: How can the work of disability advocates and organisations be better supported?
CT: Closing Thoughts: What other thoughts you would like to add?
Panelist Profiles:
Claudia Sartor - @global_peer
Global Mental Health Peer Network is an international non profit organisation which emerged to give voice to persons living with a mental health condition and who are users of mental health care and services - this specific target group of people with lived experience had never before been adequately represented at both local and international levels or been meaningfully involved in addressing the challenges and needs that they face on a daily basis at grassroots level. Yet many posses excellent leadership potential and passion but never been given the opportunity to lead and inspire change. The GMHPN specifically focuses on empowering and developing leadership potential to generate new global lived experience leaders, specifically focusing on the younger generation to start taking the lead. It is represented in 31 countries, by 56 representatives across the world.
Vanessa Carter - @_FaceSA
Vanessa is an e-Patient Scholar at Stanford University Medicine X as well as an antibiotic resistance, one health and disability rights activist for facial disfigurement. Due to a severe car accident during 2004 in Johannesburg, she spent ten years in the medical system reconstructing damage caused to her face which resulted in an antibiotic resistant infection called MRSA. Vanessa teaches and consults in digital medical marketing services to improve access to reliable, patient-centered medical information which still presents as a problem for many patients today, and has established the first Twitter chat to discuss sustainable health development in South Africa. Vanessa is also a mother of a child with autism.
Lidia Pretorius- @Disability_SA
Lidia Pretorius is a prominent disability rights activist and consultant with a deep understanding of the challenging systems surrounding people with disabilities in South Africa. A deep commitment to the creation of a socially just South Africa and Africa has steered her path over the past 35 years, and has provided the foundation for disability and human rights activism, disability inclusive development, public policy reform and more recently, disability empowerment life coaching.
Rachel Wright - @BornattheRightTime
Rachel Wright (BSc) is a qualified nurse and unqualified mum of 3, parenting a son with complex disabilities and life-limiting epilepsy. Author (The Skies I’m Under), award winning blogger, speaker, trainer and founder of Born at the Right Time. Rachel works towards bridging the gap between families of children with complex conditions and the practitioners who support them with a focus on effective communication, coproduction, community and embracing life’s challenges. Rachel is currently leading a postural care project funded my NHS England around postural care for people with learning disabilities in the age of covid.
Beyond Ability Talent Solutions - @MsPhali
Ntsoaki Phali is the founder of Beyond Ability Talent Solutions, an award-winning disability recruitment agency that has placed over 5500 seekers with disabilities in various economic opportunities in South Africa. This includes mentoring over 800 startups and improving awareness to various corporates and audiences in the SADC region, and the general public through media outlets.
Chelsea Williamson - @Chelsea12_12
Inclusion and Accessibility facilitator at iSchoolAfrica. I believe Accessibility and inclusion is for everyone. Yes, even you. I am passionate about opening mindsets to the realities of accessibility and how even though it is life changing for some, it can be equally as impactful for #everyone. I had to overcome my own personal barriers, and as a result has become dedicated to breaking barriers for all communities by creating awareness shedding light on possible solutions to accessibility and inclusion.
Naomi Schauer - @ConecktOrg
Naomi Schauer has spent 20 years in the field of disability and mental health, initially as a teacher and then as a social worker. She is passionate about helping the sector to educate, support and stimulate individuals with various levels of functioning. Naomi is the founder and CEO of C.O.N.E.C.K.T, a dynamic digital networking platform that facilitates the sharing of information, donations, support and resources for non profit organisations and community-based initiatives.
Diff-ability - @DIffAbilityCIC
We all have different abilities, Diff-Ability Community interest Company aims to promote positivity about disability, Learning disability and Autism through creating inclusive community events, training and conferences. Inspired by our son who has Down Syndrome.
Sinethemba Disabilities - @SinethembaDO
A nonprofit organisation aimed at bringing social awareness to disabilities in South Africa. This organisation seeks to assist and educate abled bodied individuals on how to create a more inclusive society based on the concept of the social disability model. It’s key audience are the youth as they are the leaders of tomorrow who will effect change, and messages are created to connect specifically with this audience.
Voice for Cruz - @Voice4Cruz
Au-some Kids #voice4cruz is committed to helping parents/ legal-guardian /communities have a better understanding of the daily struggles autistic individuals go through and how to better assist and support a loved one/friend/colleague be comfortable in any environment which will lead to unlocking their unique abilities. The platform was founded by a mother and her child with autism in South Africa with the need to openly talk about their journey in hope to raise awareness on the hopes and needs of families with children on the spectrum.
Thuli Zikalala- @Thuli_Zikalala3
Thuli Zikalala is a qualified South African Sign Language (SASL) interpreter with an
Honours degree from Wits University, one of only eleven (11) South African Translation Institute (SATI)accredited SASL interpreters in South Africa. Thuli is also a SASL podcast pioneer, being the first person in South Africa to interpret a podcast into SASL, and her company, Yellow Owl, aims to be an industry leader in widespread use of SASL across all mediums. As an entrepreneur and industry-leader. Thuli is always looking for groundbreaking opportunities to inspire people and push humanity forward.
David John Kerr - @DJKerr88
David Kerr is a Digital Transformation Specialist with a focus on Accessible technologies, and the impact these can have in Disability awareness. He is based in the United Kingdom.
Comments