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down syndrome

world down syndrome day calls for partnership and empowerment

"with us, not for us" aims to raise awareness of the importance of partnerships with the down syndrome community to create job opportunities, supports for independent housing and a world that accepts diversity.

by robin roberts

published mar 21, 2023

6 minute read

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6 minute read

join the conversation

“we envision a world where communities welcome people with diversity," says laura lachance, aura lachance, executive director, canadian down syndrome society. credit: down syndrome international

jodi klukas attended college, volunteers at a seniors’ activity centre, works at a restaurant, competed in the 2017 provincial special olympics and will compete this june in the world summer games in berlin, germany, in rhythmic gymnastics. the vancouverite also enjoys journaling, reading novels, and watching documentaries to expand her knowledge about the world. clearly, living with down syndrome has not slowed jodi’s ambition, and that’s what she wants others to know about people with the condition: “how smart they are,” she says.

“lots of people with down syndrome are involved in the arts, film, modelling, advertising,” says laura lachance, executive director, canadian down syndrome society, noting the recent oscar winner james martin, who has down syndrome. “it’s important that people with intellectual disability, who have been disproportionately labelled as unable to do anything, are included. there are definitely some who can, and some who can’t, but it’s about recognizing that and not just writing them all off.”

what is down syndrome?

one in every 781 babies in canada is born with down syndrome, according to the canadian down syndrome society. about half are born to mothers over the age of 35, but about half are born to those younger than 35, since younger women have more babies. the condition is genetic, and occurs when a baby is born with an extra chromosome. babies are typically born with 46 chromosomes, whereas babies with down syndrome are born with 47, and research has yet to determine why.

the extra chromosome, referred to as trisomy 21, changes how the body and brain develop, which can cause delays such as lags in learning, speech, and motor skills. people with down syndrome also share certain physical characteristics, such as a flat nose bridge, wide-spaced almond-shaped eyes, small hands, feet and ears, and shorter stature. they’re also plagued by various health complications, such as heart, thyroid and gastrointestinal issues, vision and hearing problems, as well as a greater risk for early onset alzheimer’s disease. the majority of men with down syndrome are infertile, due to a combination of hormonal and morphologic differences.

lifespan is on average 60 years — just a few generations ago, it was early 20s — but many people live much longer, thanks to medical advances.

“life expectancy was dramatically lengthened in the early 1990s due to cardiac intervention, which was not routinely offered prior to that time,” says dr. melanie lewis, medical director of the stollery down syndrome clinic in edmonton, the country’s largest with about 700 patients. “but, generally, many under-represented and/or marginalized communities face barriers accessing optimal health care, which may ultimately affect their life expectancy.”

down syndrome supports has come far, but there’s more to be done

canada — and the world — has come a long way from the days when people with down syndrome and other intellectual disabilities were either sterilized without their consent, a practice that ended in canada with the supreme court of canada’s “eve decision” in 1986, or institutionalized, which stopped when ontario’s huronia regional centre closed in 2009. those shameful eras also curtailed studies on those with down syndrome.

lachance says much of the research on the condition was conducted on people who were institutionalized. now that they live at home with their families, it’s been difficult to track any issues.

but today’s support systems are infinitely better, with early health interventions, improved educational programs and workshops, recreational activities, up-to-date resources for parents, caregivers, and health professionals, and at-home lessons. in addition, updated curriculums at the college of teachers has expanded to include instruction for diverse kids in the classroom. lachance believes that, despite some challenges, it’s better for kids with down syndrome to attend regular classes.

“it’s not only good for the child to be included but it’s good for their peers,” she says, “because what happens when the child turns 21 and has to live in the world where there are no separate rooms? you learn how to live with each other. you want them to develop empathy and understanding to be good citizens of the world.”

technology in the form of augmentative communication systems, apps, and assistive technology has vastly improved many people’s lives as well, particularly for kids with speech challenges. but despite so many advances, lewis says there’s room for more.

“we need to expand the opportunities for specialized post-secondary education, job opportunities, and supports to live as independently as possible in the community,” she says. “children with ds require rehabilitative services and supports, especially speech language pathology, to meet their best potential. the goals for our children with a ds diagnosis are not different than for any child: we want the kids to be healthy, meet their best individual potential, and have rich social relationships, which is why speech intervention is so critical.”

jodi klukas, 28, attended college, volunteers at a seniors’ activity centre, works at a restaurant, competed in the 2017 provincial special olympics and will compete this june in the world summer games in berlin, germany, in rhythmic gymnastics. supplied

along with those critical supports, attitudes toward those with down syndrome have come a long way.

“i was a little bit scared in the beginning,” says jodi’s mom, wendy. “i felt quite supported when i was in the hospital with jodi — she had to stay because of some complications — but the general information that i got was very outdated. they talked a lot about institutions. there wasn’t a lot of, ‘these are all the amazing things that can happen.’ it was more like, ‘well, good luck.’”

she says jodi, who is now 28, started speech and occupational therapy at the age of three and continued off and on for many years, but really blossomed when she attended a reading and writing program during college.

“this opened up her world and gave her a vocabulary to express herself,” says wendy. “she used sign language at a very early age, [which] helped her get her needs met. the main thing with down syndrome is having the opportunity to keep having opportunities, and repetition is so important. once the opportunities stop, it is easy for skills to atrophy.”

people with down syndrome can and should have jobs

increasingly, employers are realizing the benefits of hiring people with down syndrome.

“those who can and want to be gainfully employed and paying taxes could be and should be,” says lachance. “and they would be great employees. they’re not using it as a stepping stone to a better job. they’re loyal, dependable, they love repetitive tasks — the kinds of things typical kids put up with before moving on to something else.”

she also says there’s been progress around housing models for when and if people with down syndrome decide to live independently, such as supportive roommates, a concept that is more common in many european countries.

“we envision a world where communities welcome people with diversity, where there are opportunities for them to participate, where it becomes the cultural norm rather than the cultural exception for there to be ever-increasing diversity,” she says. “it’s also about teaching individuals with down syndrome about life. when you get a job you have to do a good job; you didn’t get the job because you have down syndrome. we’re not talking about tokenism here, we’re talking about real change to the language, to the acceptance, to the belief that people with down syndrome can do more and want to do more. and that they have dreams just like everyone else.”

jodi klukas dreams of being a food preparer and designer — aspirations perhaps helped by her mom’s encouragement and support.

“i just tried to help jodi to believe in herself, to know that she was able to do whatever it was she set her heart to.”

world down syndrome day is march 21 — ”with us, not for us” is a call for supporters to work in partnership with people with down syndrome, and empower them to make decisions and have their voices heard. to learn more, click here.

robin roberts is a vancouver-based writer.

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robin roberts

world down syndrome day calls for partnership and empowerment

"with us, not for us" aims to raise awareness of the importance of partnerships with the down syndrome community to create job opportunities, supports for independent housing and a world that accepts diversity.

what is down syndrome?

aging with down syndrome: 'here i am' campaign aims to dispel misconception of shorter life expectancies

living with down syndrome: 'some people are uncomfortable around me. that’s okay. i’m happy with who i am'

down syndrome supports has come far, but there’s more to be done

people with down syndrome can and should have jobs

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world down syndrome day calls for partnership and empowerment

"with us, not for us" aims to raise awareness of the importance of partnerships with the down syndrome community to create job opportunities, supports for independent housing and a world that accepts diversity.

what is down syndrome?

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