Specialisterne Australia helps employers understand, value, and include the unique skills and capabilities of people on the autism spectrum.
Mama Bear in Action (MBA)
My own story with Disability is a personal and traumatic one. I am very blessed I still have my health: my kids are now secure, and I have everything I need. I am ‘low maintenance’ because I have learnt to and am able to comfortably live with the ‘bare minimum’. I have given up paid work for 2 years to help my son (on his journey towards sustainable independence while overcoming complicated grief following the loss of his best mate to suicide) and it is worth it. I am so proud of his own journey and how far he has come.
My son is 20 years old now. I adopted him when he was 6 weeks old. They had no record of his medical history, his antenatal care at birth and I noticed very early he did not make eye contact, he did no cooing like other babies, his body was very floppy and he ‘failed to thrive’
He had a range of tests and in spite of this, they couldn’t find anything wrong. A MRI showed some brain changes which were ‘rare’ in those days.
They couldn’t really give us a prognosis and I didn’t get much guidance to understand the impact his condition would have on his learning. My son was 2 years old and I was advised to ‘wait and see’. I didn’t want to ‘wait and see’ instead I organised a speech therapist, a psychologist and he attended early intervention programs. I imagine like many mum’s, I started intensive research and I came across someone who had brain changes similar to my son. His journey inspired me, and his parents were both child development specialists. They shared what they had tried and what worked with me. This was incredibly useful. I consider myself as a shy and introvert person and if I am writing these lines to be shared today, it is thanks to that couple who generously shared their journey.
In 2003, my son was about 4, I came across Augmentative and Alternative Communication (AAC) online. I engaged with the speech therapist but instead her advice was not to use it because at the time, they believed it would prevent his verbal communication because he would rely on the devices and systems. I am happy I had that discussion with the speech therapist and grateful for the trust relationship we had developed: I followed their advice.
Fast forward to my son’s adolescence years. These times were sometimes chaotic. We were living overseas by then and there were no adequate school or therapy facilities. The various therapy methods/ specialist programmes my son was doing had plateaued. He had tantrums at home, and they were frequent. We did not always understand him. He was clearly frustrated and angry. He could not communicate at school which I believed added to his frustrations. His speech therapist was using ‘baby’ learning materials/books and my teenage son was just was not interested in attending his speech therapy sessions anymore. During this time, he was working with a school coach and I asked her to look into AAC options. She earmarked a couple of AAC apps but we did not start using any straightaway as it was not possible to purchase them in the country where we were then living.
When my son moved back to Australia (about 3 years ago), we started working with another speech therapist who helped us look for new apps for his iPad. I was delighted when I found that the AAC app his new speech therapist recommended was among the list of AAC apps our school coach (overseas) had earmarked!!!
My son loves video games and he learnt to use the iPad by himself. He learnt a number of programs and we encouraged him to play the games.
His speech therapist took him shopping once and helped him communicate in the shops using his AAC. Now, my son does not use AAC much. I think my son does not want to use his AAC because he does not want to appear “different”. He has put in place his own coping mechanisms and very often it is only when he talks or is required to read, that anyone would notice his intellectual disability.
He is currently working, and he holds 2 ongoing part-time jobs (yes amid COVID-19!). It is thanks to our family’s support that he has been able to achieve this. He recently got his first NDIS plan approved after more than two years of struggling. I am currently looking into how to best support him regarding communication which includes the use of AAC. The most important thing is to build self-esteem because my son wants to be a chef and is currently working in the 5-star hotel restaurant. He has worked very hard and is currently enrolled in a Certificate III in hospitality run by his workplace and which is in partnership with our local TAFE. He is also doing English, one-on-one tutorials.
He still has his love of video games which he plays online. I am happily surprised as he is in groups where he has to talk to others. These online games have allowed him to participate in social groups which I am happy about. I am trying to leverage on his passion for video games and encourage him to keep learning. We are also looking into C readers so he can read memos at work. He does not have an on-the-job support worker yet. I am now looking for a support worker who can help him use technology better. Ideally, we are looking for a support worker who has the same interests as my son and who can act as his mentor, coach or role model. I believe this will make a huge difference in building his confidence.
I am amazed and so grateful for the young man my son has become. Yes, my mama heart swells with pride when I see him ‘standing tall’ when he wears his chef jacket (despite his scoliosis)! He did not grow in my tummy but he grew in my heart!
He has recently learnt to make videos and upload them in Youtube! He has since been actively asking family and friends to ‘like’ his videos and to follow him!!
I know he knows much much more than the words he can say AND the words he tries so hard to say and that others cannot always understand.
Technology can be a great enabler and resource. We are really hopeful for our son’s future.
aka Mama Bear in Action (MBA)
“While the roots of the human rights movement can be traced to ancient philosophical writings on natural law, the modern human rights framework has its origins in the formation of the United Nations (UN) in 1945. At the core of the international human rights framework is the principle that ‘all human beings are born free and equal in dignity and rights’ Put this simply, human rights are about what it means to be human; to have the autonomy, personal freedom and value regardless of ethnicity or race, religious belief, gender or other characteristics. Human rights law accepts that human rights come into tension with each other, and with other interests. It provides ways of resolving these tensions to accommodate multiple rights and interests.
Human rights law can help us answer the big questions posed by the rise of new technologies, including how to protect humans in a digital world. Stakeholders contributing to the Commission’s consultation process have reported many ways in which new technologies engage our human rights, and they have been broadly supportive of focusing more on human rights to analyse the social impact of new technologies. Drawing on this broad stakeholder support, human rights approach to analysing the impact of new and emerging technologies is vital in understanding and responding to the risks and opportunities. Applying a human rights framework starts with considering how new and emerging technologies affect humans. The potential human rights impact is enormous and unprecedented. AI, for example, can have far-reaching and irreversible consequences for how we protect privacy, how we combat discrimination and how we deliver health care— to name only three areas. Human rights is already used as a source of law and an established set of norms, to analyse the impact of new technologies.
What are human rights? We are all entitled to enjoy our human rights for one simple reason—that we are human. We possess human rights regardless of our background, age, gender, sexual orientation, political opinion, religious belief or other status. Human rights are centred on the inherent dignity and value of each person, and they recognise humans’ ability to make free choices about how to live. Australia is a signatory to seven core human rights treaties, which cover the full spectrum of human rights, including civil and political rights, and economic, social and cultural rights. Accordingly, Australia has voluntarily agreed to comply with human rights standards and to integrate them into domestic law, policy and practice.
Human rights are universal, meaning that they apply to everyone. They are indivisible, meaning that all human rights have equal status. They are interdependent and interrelated, meaning the improvement of one human right can facilitate the advancement of others. Likewise, the deprivation of one right can also negatively affect other human rights. Accordingly, while there are sometimes complex inter-relationships between different rights, governments must ensure everyone’s human rights are protected.
Overview of technology advancing & restricting human rights
New benefits come, new risks and this comes with new responsibilities.
Right to equality and non-discrimination Applications that use AI, and especially machine learning, must be ‘trained’ using data. Where that data incorporates unfairness, such as discrimination, this can be replicated in the new application. Where training data is collected and used well, new technologies such as AI can enable better service delivery, especially for vulnerable groups. Unequal access to critical new technologies can exacerbate inequalities, especially where access is affected by factors such as socioeconomic status, disability, age or geographical location.
Freedom of expression and new technologies can enable wide-scale surveillance online and in the physical world, which can deter individuals from legitimately sharing their views. New technologies can aid freedom of expression by opening up new forms of communication. New technologies can assist vulnerable groups by enabling new ways of documenting and communicating human rights abuses.
Hate speech, ‘fake news’ and propaganda can be more readily disseminated. Right to benefit from scientific progress New technologies can improve the enjoyment of human rights such as access to food, health and education. Ensuring accessibility across all sectors of the community can be difficult.
Freedom from violence, harassment and exploitation Access to new technologies can provide greater protection from violence and abuse, and the ability to document abuse, but can also facilitate other forms of abuse (such as image-based abuse or covert surveillance). Greater access to information and support through technology can make support for survivors of violence and abuse more affordable and accessible.
Accessibility New technologies can provide new ways to deliver services, thereby increasing accessibility for people with disability and others. Reduced cost of services through affordability of new technology can promote equality for people with disability by ensuring progressive realisation is achieved faster and reasonable adjustments are more affordable. New technologies can increase barriers for people with disability if they are used in products and services in ways that are not accessible. Protecting the community and national security New technologies can increase the government’s capability to identify threats to national security. Use of such technologies for surveillance purposes can be overly broad and, without appropriate safeguards, can impinge unreasonably on the privacy and reputation of innocent people.
Right to privacy, The ease of collecting and using personal information through new technologies such as facial recognition can limit the right to privacy. Personal data can flow easily and quickly, across national and other borders. This can make privacy regulation and enforcement more difficult. It can be difficult to ‘correct’ or remove personal information once communicated. The ease of communicating and distorting personal information (eg, through ‘deep fakes’) can lead to reputational damage and other harms.
Right to education New technologies can improve the availability and accessibility of education. Lack of access to technology can exacerbate inequality, based on factors such as age, disability, Indigenous status, and rural or remote location. Access to information and safety for children Online environments provide children with the opportunity to access a wealth of information, but also pose challenges for their wellbeing.
New technologies create different settings for harassment and bullying that are sometimes challenging to moderate. Digital technology can also facilitate the exploitation of children (and women) and there is an obligation to protect them from exploitation. Obligations of states to protect human rights International human rights law requires the Nation States to respect, protect and fulfil human rights. The obligation to respect means that the Nation-States must refrain from interfering with or curtailing the enjoyment of human rights. In other words, governments themselves must not breach human rights.
The obligation to protect requires the Nation States to protect individuals and groups against human rights abuses. In other words, laws and other processes must protect against breaches of human rights by others, including non-state actors.
New Responsibilities from Governments
The obligation to fulfil means that the Nation-States must take positive action to facilitate the enjoyment of human rights. As noted above, Nation States must recognise that the breach of one human right might affect another; that is, all human rights are ‘indivisible and interdependent and interrelated’. How are human rights protected in Australia? In order to be fully enforceable in Australia, international human rights law must be incorporated into domestic Australian law through legislation, policy and other arrangements.
Human rights are protected in Australia in a number of ways including in Australia’s Constitution—Australia has no federal bill of rights, but a small number of rights are protected directly or indirectly in the Australian Constitution—most particularly, the right to freedom of political communication. It is proposed Digital Communication Technology Standard is more likely to achieve its aims if there are additional measures that can assist people and organisations to understand their responsibilities under the law and to provide increased certainty to them when seeking to comply. This could include a mix of mechanisms within an overall compliance framework.”
Reforms moving forward these reforms must consider free and equitable, and be informed by all stakeholder groups and feedback gathered throughout a broad consultation process which includes people with disabilities and their allies.
Edited: Karen Burgess from the Human Rights and Technology Discussion Paper December (2019) Australian Human Rights Commission.
Disability Positive – Language Matters.
It’s Time 4 Fun
The terminology we are using in today’s National Disability Insurance Scheme (NDIS) community, needs a new, positive and funky revival. The NDIS originally hailed as a lifeline for many disabled people, who were part of the lowest 10 % in the Disability population and who often missed out just about everything society had to offer. The United Nations gave Australia unflattering reports, for several years in a row, for their ongoing poor treatment of people with disabilities, and if you lived in Australia as a disabled person, life appeared grim.
People from the disability sector who were shut in Institutions were unable to access employment, education, the community and, more broadly were not able to live a life which was self-determined and self-actualising. I feel the underlining believe from providers at the time was, ‘disabled people were not interested in being self-determined or independent, so why bother. “No one cares…so why should you”. This was certainly the repeated message I got over my years working in the sector.
This, of course, was not what people with disabilities were saying, as their experiences were heavily documented and recorded. The ‘us and them” mentality never took with me as I am a person with disabilities working in this sector. It is different because I don’t see myself removed from the community, I am working in.
It is clear from pre-NDIS days, the terms “Choice and Control”, “Building Capacity”, “Reasonable and Necessary” “Assumed Capacity” and “Ordinary Life” was not part of the disability community’s conversation. But today in the workforce we talk about this like it actually means something. Language is important because language can inspire action and reaction, so how we talk about this matter. These concepts are obvious, and it is clear the Legislation was not written for the purpose of reflecting a disability community, but for modernising a workplace which was failing to change and failing to address some very basic human rights and meet some very basic needs.
I question why this should have been legislated because these were already enshrined in fundamental human rights which people with disabilities should have experienced as natural laws and fundamental to their personhood. When people in the NDIS sector now talk about these concepts it is just indicated to me how far away from human rights people with disability are in Australia that we had to find a way to formalised these concepts and embed this into a framework such as legislation to help people who are working with people disabilities understand their rights, the purpose of life and the role this has when supporting people with disabilities.
Sadly, for me, this is not a sign of progress.
We need a new way of talking about these concepts that move us from an outdated boomer model to new and exciting millennium phase. For pushing the expectations forward in terms of opportunities and practice. My hope is for people to be prideful about disability and become champions of a funding model which is flexible, thoughtful, compassionate, market-driven with a dash excitement about the future. Let’s break from old conventional and conservative thinking which serves to keep people inboxes. I want to be part of a design which is exciting and innovative.
With some help from my friends on The NDIS Community Facebook Page, I asked this community to turn these boring old outdated terminologies and concepts into something much more reflective of how people want to be represented.
This is what we came up with.
- Ordinary Life.. well, this is super boring, right? We came up with: To lead the life destined to live or even just as simple a Happy Life. So much better, right?
- Instead of Reasonable and Necessary becomes Funding for Needs, which is really just how it sounds. The funds are there to supply what people need which helps to achieve their happiness and dreams.
- Choice and control changes and becomes Dreaming my way to Goals. I especially like this one.
- Building Capacity becomes Believing, Skilling and Achieving.
- Assumed Capacity becomes Expected Human Approaches. This one is especially important as it takes the focus off the person with the disability and to the person providing support. The service use holds some responsibilities here and they have to get it right in terms of know when to stand up and knowing when to sit down.
This changes everything. It changes who these concepts of people’s lives are put together in a framework. Positive thinking through to achieving practical results.
Lastly, a new and emerging concept which I feel is important for anyone deciding to work with people with disabilities. If people are not coming to the passion for the sector, it’s people and for looking for which acts build collaboration and kindness, then I ask you – have you considered a job in Banking or IT?
Let us reflect on disability culture in the way which represents a broad range of lives. It’s not just about living ordinary lives but taking pride in the extraordinary lives we are living. The old script we are using is out of date and let’s face if you haven’t understood the social disability framework by now, you’re too late this is changing and the new wave of disability culture is being created.