We Are All Stars: A Sneak Peak Into The Lives Of Young People With Down Syndrome
It’s sad that we can’t see many stars from the city. However, if you go somewhere with less light pollution, you will see dustings of sparkling stars scattered above you like sprinkles. Each star is a different age and a different distance away from earth, and each one is beautiful in its own way.
Humans are like stars: different, but equally beautiful and valuable. One group of people that may seem different from you are those with Down Syndrome (also known as DS), a chromosomal condition that occurs when a person is born with three chromosome 21s instead of two. Down Syndrome can affect a person’s cognitive ability and physical growth, and may cause a higher risk for certain health problems. But what is it really like to be a young person with DS?
According to Barb, a mother of a twenty-year-old woman with DS, having DS feels like talking with a full mouth of marshmallows because people with DS typically have overly large tongues. It feels like running with shoes that are too big because people with DS have difficulty with coordination, balance, and they have low muscle tone. Imagine putting on a pair of winter gloves and trying to pick up dimes. That’s what it feels like to have weak motor skills. For someone living with DS, scenarios like these are part of their everyday life in a world that’s not built for them. Luckily, there are accommodations in place for people with DS to make these difficulties a little easier.
Many students with DS require a teaching assistant or technology, and time for oral expression so that they can achieve their full potential. Further, for some, something as simple as getting around the city can be difficult. Lucy, a twenty-year-old woman with DS, has recently been approved for Wheel-trans service with the City of Toronto to help her get around. Her mother thinks Wheel-trans is the best option because otherwise Lucy would have to be taught specific bus and subway routes, and “there is a worry around her on the stairs and the crowds of hurrying people”.
In terms of work, people with DS can acquire a variety of jobs. The Down Syndrome Association of Toronto’s (DSAT) Youth Action Committee’s (YAC) members, all between the ages of nineteen and forty, are baristas, supply teachers, grocery store employees, and even secretaries. To help them perform at their best, it is helpful for them to have written instructions, repetition, and a to-do list that they can check off.
Just like work life, a person with DS have relationships that are similar to your own, with just a few differences. In many cases, people with DS are supported by their families, which can be financially and emotionally straining due to multiple doctors appointments and treatments such as speech therapy. However, like any other person, they bring joy and love to the family, always making everyone smile and laugh. It is easiest for people with DS to make friends when they are young: by Grade Five, the cognitive and social gaps become too great and the interests of their friends change. In addition, it is difficult for them to hang out with friends outside of school because, in many cases, plans must be made through the parents. While Barb, Lucy’s mother, says she feels comfortable with Lucy going out unsupervised, some of Lucy’s friends’ parents feel differently. Situations like these create a lack of opportunity for meeting people, which also makes it harder for people with DS to find romantic relationships. However, there are many groups that people with DS can join that allow them to socialize, make new friends, and have a good time. A favourite event among young adults with DS is Dance Rock, a monthly dance where people with DS dress up and dance together. The members of DSAT’s YAC tell me that they made some of their best friends at Dance Rock, and they always look forward to the next dance.
If you’re anything like me, you might find it easy to get lost in the troubles of your own life and forget about those around you. While it is important to take care of yourself, you should see past your own needs and take the time to understand someone else when you can. Sadly, people with DS face constant discrimination. A member of YAC, Francie, was called rude names by a police officer. Lucy has been taught to always ask for a receipt at stores so that people don’t scam her. If we can take the time to understand other people and empathize with their struggles, the world will be one step closer to being a place where everyone is valued and appreciated. Two pieces of advice I have for communicating with people with DS are to treat them like you would treat anyone else and to be patient. It may take them longer to get their words across, but if you take the time to listen, it is worthwhile for what you will hear. Finally, if you’re looking to get involved in the community, YAC is hosting an event at Havergal in February that you may be able to volunteer at. Even though they are different, people with Down Syndrome are stars, too, and it’s their differences that make them shine brightest of all.