living with down syndrome: 'some people are uncomfortable around me. that’s okay. i’m happy with who i am'
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“people judge those with down syndrome, but i say, take it easy on them,” says chris sayer. supplied
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one in every 781 babies in canada is born with down syndrome (also known as trisomy 21), according to the canadian down syndrome society. the risk increases with the mother’s age — about half are born to women over 35, although half are born to mothers under 35 because younger women have more babies.
in addition to varying developmental delays, such as some intellectual disability, lags in speech and motor skills, and characteristic physical features such as flat nose bridge, widely spaced almond-shaped eyes, and shorter stature, those with down syndrome are prone to heart, gastrointestinal, or thyroid conditions, as well as vision and hearing problems.
but the vast majority live healthy, happy lives and, like b.c.’s chris sayer, want others to know they are quite capable of communicating, learning, working, playing sports and spreading joy. this is his story.
this interview has been edited for length and clarity.
i’ve lived in the vancouver suburb of port moody all my life and went to school there. i was integrated into the regular classroom in elementary school, but in middle school i used a resource room with other students who had different needs. i made lots of friends there who are still my friends now.
i had open heart surgery when i was nine months old with many complications that kept me in hospital for three months. i had other heart surgeries at seven and 10 years old. i have a mechanical heart valve and i will take blood medication for the rest of my life.
i never had any speech therapy through school so speaking is a little hard for me. i have a distinct voice. i have good communication skills, it’s just that sometimes people have difficulty understanding me. i have a point but sometimes i have a difficult time getting it across. i’m capable, but sometimes i can’t project that verbally. i’m trying my hardest to use bigger words.
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i was never bullied, but i have been made fun of for how i talk. because i cannot read phonetically, i use [speech-generating devices] on my phone. also, when somebody sends me a text, i can tap it and it reads it to me.
when i first got my phone years ago, i was in the apple store and a customer service person who was blind and used an aid dog taught me how to use accessibility apps. she was amazing and proved again how a person with a disability can be so helpful.
i work as an ambassador for the down syndrome resource foundation [dsrf] in burnaby once a week. i help at the front desk, i work the functions and the sports events, like the annual run up for down syndrome, which i haven’t missed participating in yet, and i represent the organization at functions. i’ve also worked one day a week at the burnaby mountain golf course since 2010 in the kitchen and at some of their functions. i’m a people person, so i really love to do that.
![chris sayer works as an ambassador for the down syndrome resource foundation [dsrf] in burnaby, b.c. supplied](https://smartcdn.gprod.postmedia.digital/healthing/wp-content/uploads/2023/03/chrissayer-1.png?quality=90&strip=all&w=1128&h=846)
chris sayer works as an ambassador for the down syndrome resource foundation [dsrf] in burnaby, b.c. supplied
i also like to golf. my dad is a good golfer so i’ve been golfing since i was quite young. i’m not as good as my dad but i’m pretty good at it. i’ve been involved in the special olympics and challenger baseball since grade 3. i love all sorts of sports — curling, track, cardio.
i’ve been going to the dsrf centre for many years for their programs and now i volunteer there as a mentor to the younger kids, helping them with summer school classes. i show them that i’m confident, and i try to bring them joy.
people with down syndrome wear their emotions on their sleeve
i didn’t have a mentor when i was younger and wish i did to do things with and teach me things. my mom just hired a respite worker named joel who is about my age. he doesn’t drive so he takes me on the skytrain and shows me how to be independent. but during covid we stopped taking transit and it’s been hard to get back into it. everything during covid was on zoom, and it drove me nuts. counsellors at dsrf really helped with me feeling anxious during this time. but i did learn more about computers and how to stay connected to my friends and programs, like guitar lessons, singing, reading stories and other social stuff through zoom.
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i would really like to get a job at gm place where the vancouver canucks play. it’s not that i’m a big canucks fan but my best friend is so i go to the games and watch the games on tv to support him. some of my friends work there as ushers and i would like to do that too. my vision is bad, so i have difficulty with stairs — but i do elevators.
i don’t think about what i can’t do. i’m always thinking of how i can make it work. and that’s what many people don’t understand about people with down syndrome. they judge them and think they can’t do things. i say, take it easy on them and others with special needs. people with down syndrome wear their emotions on their sleeves. i’m always happy, always excited, always friendly where many people aren’t. and i’m pretty social.
i love living with my parents — i live in the basement — but i want a place of my own once i save up and make more money. i’m 31, i want to be married and have kids someday. i would like to live in vancouver where there are lots of people. i like the excitement of that, but it’s very expensive. i’m trying my hardest to work more and make more money to do that.
i want to be around as many people as i can and show that i’m a happy guy. there are lots of people in my neighbourhood where i walk who know me and stop and talk to me, and people driving by wave at me. some people are nice and talk to me and some people are not and are uncomfortable around me. that’s okay. i’m happy with who i am.
to learn more about world down syndrome day, or to connect with others living with down syndrome, check out the down syndrome resource foundation or the canadian down syndrome society.
robin roberts is a vancouver-based writer.
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