Story category: Featured

Skie’s Poem

“Life with intellectual disability”

Sometimes having intellectual disability can feel like an exclusion,
Feeling inclusion can sometimes be an illusion,
Where bullies fake to be your friends,
That’s where the bullying starts to get real and never ends.

When you just want acceptance,
But you keep facing resistance,
You try to celebrate diversity,
But you keep facing adversity.

Being desperate for equality,
But the opposite is reality,
Socially we struggle to have stability,
Because of societal perceptions of our intellectual disability.

Community doesn’t give us much opportunity,
In my younger years I entered in a contest to show my ability,
To be laughed at, that tested my vulnerability,
Then I came first, proving my versatility.

At that instance my words broke the chains of their negativity,
I spoke with strength, turning my pain into creativity,
Showing the world that my voice holds endless possibility,
Proving that I can overcome the impossibility.

People with intellectual disability have a lot of resilience,
Due to the ongoing battles we experience,
We have so many capabilities,
If only minds could see our probabilities.

Even though when I was burning inside with a yearning,
To receive knowledge and continuous learning,
I was often turned away,
As they didn’t believe in me anyway.

If I didn’t have the opportunity to participate,
I couldn’t demonstrate then celebrate,
If only there more awareness,
There would be abundance of fairness,
As a result there would be no carelessness.

But I have to say,
For the friends I do have today,
I am grateful life turned out this way,
Now I feel like I belong,
Nothing can ever go so wrong,
Looking forward to more opportunity,
Friendship, leadership, and unity, a better, truly inclusive community!

Skie Sarfaraz

About the author

Mrs. Skie Sarfaraz is a distinguished Community Disability Team Leader and Lived Experience Researcher with intellectual disability who brings unique expertise in co-design, self-advocacy, and knowledge translation. Her dual perspective as both a researcher and community leader, alongside her First Nations identity, enriches her approach to creating culturally responsive, person-centred support.

As an Associate Investigator on the GeneEQUAL project since 2021 and a Chief Investigator on the My Health Choices My Way since 2025, Skie has demonstrated exceptional research capability in co-designing research, conducting interviews, analysing data, and translating findings into accessible formats. She collaborates with UNSW researchers, including Professor Iva Strnadová and Mrs. Julie Loblinzk Refalo OAM, on projects focused on improving lives of people with intellectual disability across lifespan. Her contributions include five high-impact publications in leading journals and articles in Research Australia’s INSPIRE magazine Disability edition.

Skie specialises in making complex information accessible through Easy Read translation and health literacy resources. She has presented at the Human Genetics Society of Australasia Conference and the Genetic Alliance Australia Forum at Parliament House (2022), and served as a Kindship Ambassador (2022-2023), facilitating online support groups for parents and carers of children with disability.

Skie is happily married and has two beautiful children.

GeneEQUAL Schools: New study for school leaders with experience in supporting students with intellectual disability 

The GeneEQUAL team at UNSW is seeking school leaders for important research on health literacy education for students with intellectual disability. 

Are you a…. 

  • Principal, Deputy/Assistant Principal 
  • Curriculum Coordinator  
  • Special Education Leader 
  • Head of Department  
  • Learning Support Coordinator 
  • Other School Leader 

Your insights could help shape best practices for inclusive health education. One very short demographic questionnaire and an online or face-to-face interview – flexible timing & location. We have UNSW ethics approval to recruit via social media, professional networks and organisations, and snowballing. 

This research addresses a critical gap in educational practice and could benefit countless students. 

Interested? Contact the GeneEQUAL team on   

Claudia Pantoja 

0478911808 

c.pantoja_mardones@student.unsw.edu.au 

PDF file

Champion Change Bursary: Building Indigenous Leadership in Genetic Health Care

Support an Aboriginal or Torres Strait Islander student to complete the Master of Genetic Counselling at University Technology Sydney.

This is a partnership with the GeneEQUAL inclusive research team. 

With fewer than 1% of genetic counsellors identifying as Indigenous, this bursary addresses critical gaps in culturally safe healthcare especially for Indigenous people with intellectual disability. 

Your investment will leverage $40,000 NHMRC funding and will create lasting impact for First Nations communities accessing genetic services.

For more information about this opportunity, please download the PDF below.

PDF file

Inclusive Practice Award – New Awardee

GeneEQUAL announce yet another Inclusive Practice Award. 

Our new awardee is Ms Tracey Miles.

She is a community nurse at Hunter Valley region, Australia.

Tracey received the award on 28/11/2023. 

Ms Tracey Miles deserves to be recognised because she is a community nurse who goes out of her way to make sure her patients are looked after in every way. She treats people with respect and listens to them. She is a beautiful nurse.