I am involved in Uni2Beyond. It’s a program for people who have intellectual disability at Sydney University. I go to Erskineville Anglican Church We Belong group, DSNSW Up Club and I live independently in a private rented apartment (which is expensive) because there is no affordable housing available.
I like representing people with Down syndrome on committees too. I am on the Sydney Local Health District NDIS Governance Committee, Centre for Disability Studies Joint Research Committee, and I am the DSNSW Representative on the Down Syndrome Advisory Network.
I also have my business (kyliedownsbarriers.com.au) which is public speaking and arts. I talk about examples in my life to help people understand and learn from people with Down syndrome and intellectual disability, and help people with Down syndrome or intellectual disability to raise their voices too. My talks give me many opportunities to speak to a wide range of people. I talk about how 90% of pregnancies where Down syndrome is diagnosed are terminated and how that makes me feel.
Sometimes people make it hard for me to speak. They always talk over me and do not give me time to speak. Sometimes people talk to the person I am with and not to me. People didn’t think I could I talk in my speeches about difficult things in my life but now I am being heard.
I have learned to deal with things. I have learned to be patient and calm, to think before I speak, and to focus. I have learned to listen and make notes before I make a speech. When you speak to someone with Down syndrome, you should make eye contact, speak clearly and be patient.
If people with Down syndrome want to get into their community more, they should get involved in different activities. You can get information about your local groups from your local library. It’s important to talk to people and keep in touch and to keep your brain switched on!