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There is a lot of confusion about what it actually means to have an intellectual disability. A quick Google search will bring up a multitude of clinical and complicated explanations that do nothing to describe the human side of having a disability.
We think the experts on this topic are the people with real, lived experience. In this blog, we asked two different women with two different perspectives ‘What does it mean to have an intellectual disability?’
Here’s what they had to say.
I know what a disability is. I have the disability that is Down syndrome.
It’s tricky to describe what having a disability feels like. I was born with it.
When I was born the doctor had some news to tell mum and dad that I have a disability. At first my dad was very sad with tears on his face. He loves me so much and I am his beautiful girl. He still knows that I have that disability. But he understands it now. Fully understands it now. Now instead of crying we laugh together. We do.
I wouldn’t change things. No I wouldn’t. It has been so amazing what I’ve been through to get here now.
My disability means that I can’t do some things. I have some trouble with sports, learning and money sometimes. But people can help me with that. I get extra support, like in the NDIS.
People with disabilities can be so beautiful and they can do anything if they believe to do it. I care about people with disabilities because I know what they are talking about.
If someone has a disability you should try to be patient and read their thoughts to know their feelings. I want people to be comfortable, relaxed and understanding when they talk to me.
I believe in myself. I believe that I can try. I can do anything if I put my mind to it.
Sometimes people treat me differently. Sometimes good and sometimes bad.
People who say I can’t do something, I say “excuse me, that is your opinion, not mine, so lay off” that’s what I say “it’s my disability, not yours, so mind your business.” Then I go and do amazing things. I can do anything and everything.
I’ve spent more than 25 years working with people who have an intellectual disability. In this time, I’ve had the opportunity to acquire a thorough knowledge, understanding and insight into working with people who have an intellectual disability.
As a sibling of someone who has an intellectual disability I can understand the many complex and challenging social, emotional, personal and family issues and needs that require comprehensive assessment and flexible service arrangements. These experiences have helped shape my core values of respect, social justice dignity, equity, empathy and integrity ensure that I take a person-centred approach in all that I do.
When describing intellectual disability, the first thought that comes to mind is that having an intellectual disability is a journey. It may not be what was expected but just like everyone without an intellectual disability there are still new and interesting aspects and challenges to explore. People with an intellectual disability still have the same goals and aspirations like everyone else, they just sometimes have to take a different path, have different timelines and sometimes have to explore alternative ways to express themselves.
I believe it’s important for society to have empathy for people with an intellectual disability – walk in their shoes. I think it is important to not have sympathy as it assumes they are a victim and need special treatment. I think the greatest thing we as a society can do is to believe that everyone, no matter who you are, have something to contribute, something to learn and something to say. We need to encourage and celebrate the individual journeys people are on and strive for continuous improvement and development.
I believe the three most common misconceptions about intellectual disability are:
Over the years, I have learned so many life lessons from the individuals with intellectual disability. The ones that have stayed with me are:
Ideally I would like to see more early intervention for people with intellectual disability to establish a communication strategy that works for them, set expectations high and treat people as individuals with potential to learn and develop.
A pre-planning booklet to help you to think about the supports you want and need – now and in the future – before meeting with your NDIA planner.
A practical, comprehensive guide to the NDIS, to help people understand the various components of the NDIS and how to access them.
A handy guide of NDIS FAQs and a glossary so you can familiarise yourself with NDIS language before your planning meeting.