October is Down Syndrome Awareness Month and DSV’s staff and Down Syndrome Advisory Network shared what it means to them to be people with Down syndrome, and some things they would like others to know.
What it’s like to have Down syndrome
The Advisory Network Chairperson Kath Mansour said, “Having Down syndrome is what makes me who I am, but it doesn’t define me.”
Colby Hickey, the Advisory Network Vice-Chairperson echoes that: “I have Down syndrome, but that’s not all I am. I am a strong individual person with hopes, goals, dreams and a voice that matters!”
New Advisory Network Member Jack Williamson said, “Just because I have Down syndrome, doesn’t mean I always need a support person or someone to help me. I would like people to consider that I am capable of learning something or doing something on my own.”
Left to right: Kath, Colby, Kez and Jack
Achievements and goals
DSV’s Keziah Glenane has said that even though she feels that having Down syndrome has made it harder for her to make friends, she still has plenty of interests and goals.
Kez said, “I have made a lot of progress to move into my home in my Ballarat community. I am happy that I have got a greyhound for a pet. His name is Buzz Lightyear and he lives with me.”
As well as being an enthusiastic dog lover, Kez also has creative hobbies and would like to turn one of them into a small business. “I like making scrapbooks for my nieces and nephews. I like listening to music and doing screen printing and design. I would like to be able to sell some of my screen printing.”
Independence is also something that Kath and Jack are proud of. Kath shared, “I have so much I am proud of that I have achieved. Living independently is important for me so I can do things for myself and in my own time. That is something I am proud of that I have achieved. I am also proud of speaking at events.”+
Jack said, “I want to move out and live on my own one day. I am proud of the skills I have learned that make me more independent, like being able to cook meals for myself and for my family. I am proud that I was able to get hired for my jobs and that I do things that matter at work.”
He is also proud of himself for, “doing all the hard work to get fit and be healthy every day. Reaching a goal makes me happy. I’d like to do more public speaking and presentations and someday I would like to be married and have a family.”
One of Kath’s goals is to discover, “how to use my skills in the workplace.”
Colby’s achievements highlight how valuable opportunities to learn are, as well as the benefits of making workplaces inclusive and accessible. “I want people to know that I’ve achieved things I’m proud of, such as graduating from high school, completing university with two diplomas, living independently with support, being an advocate for people with disabilities, maintaining paid jobs and accomplishing career goals. I want to keep learning, keep pushing myself in working harder in my career. Every goal I reach shows that I can do great things when I’m given the chance.”
Living life to the full
The DSV and Advisory Network staff members we interviewed told us about the broad range of hobbies and interests they have, and the people and things in their lives that they love.
Jack loves spending time with his family and his girlfriend, especially taking her on picnics and waltzing together. He really loves dancing. Jack also enjoys acting, and going to see musicals, concerts and cinema, especially to see action movies.
Colby said, “The things that make me happy are just like the things that make you happy, such as spending time with family and friends, listening to music and seeing live gigs, being healthy and exercising, learning new things, and being treated with kindness and respect.”
For Kath, “There are so many things that make me happy in my life. I have a lovely family who love me very much and they mean a lot to me. I have a wonderful friend that makes me feel good. I love going shopping, getting my nails done, art and craft and painting, listen to music, playing boardgames and baking. I see myself opening an art and craft business.”
Let us leave you with this
When we asked our team if there is anything else they would like people to know about Down syndrome, this is what they had to say.
Keziah wants, “people to learn to be understanding of us, and to hear our voices.” So, listen up.
“Having Down syndrome isn’t something to pity. I am happy because I have a great life and I am proud of who I am,” shared Jack.
He also said, “Having Down syndrome can be frustrating sometimes because of how people think you can handle things. Some parents who have older children who have Down syndrome and want a relationship don’t manage it very well. I think the best advice is you can just be there for your children and love them. If your partner is the person who has Down syndrome, tell them to stand up for themselves and fight for what they want.”
Kath wants people to know, “Don’t treat us any differently, we are just like everyone else. Many people with Down syndrome lead independent, happy and healthy lives. We have friendships and relationships and lead fulfilling personal lives.”
We’ll leave you with this from Colby: “I want people to know that having Down syndrome does not stop me from living a good life. I can learn, grow and do amazing things. I just want to be accepted, included and treated with kindness, just like everyone else.”