Stand Tall

Stand Tall

Stand Tall

September 2020

Author :

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.

Everygoodthingispossible!

Tough BJ

aka Mama Bear in Action (MBA)

 

Disability Culture

Disability Culture

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.