down syndrome 'doesn't define talent'
7 minute read
“levi is a very charismatic young boy, funny, engageable. and he’s a really hard worker. he really likes to help out," says sean, levi's father. supplied: heather douglas
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what would you do if you had a child who wasn’t neurotypical? who would likely face hurdles trying to get a job down the road and make a living as an adult? these are just some of the things sean and jessica adam are thinking about for their son levi, 12, who has down syndrome, also known as trisomy 21.
the huntsville, ontario couple is even considering starting a business so he can work for them, and renovating their house to add an apartment for his adult living that will give him some independence with support close at hand.
what is down syndrome?
a genetic condition, down syndrome is caused by abnormal cell division in the egg, sperm, or fertilized egg, which results in an extra or irregular chromosome in some or all of the body’s cells. down syndrome is also called trisomy 21, for the specific chromosome that has the abnormality. a person with down syndrome has three copies of chromosome 21 — normally, a person has two copies — which causes various intellectual and developmental delays.
but an initiative launched last year may help level the playing field for people with down syndrome to break through stereotypes and find employment. the canadian down syndrome society (cdss), in collaboration with linkedin — the world’s largest business community network — has created inployable, the first online employment network created for people with down syndrome. (linkedin didn’t accept requests for comment.)
several dozen people are already on board the digital platform where individuals can get help from a canadian linkedin coach to create a profile and get set up. there are also faqs and resource guides for employers to help them establish inclusive hiring and training processes.
and if the campaign kickoff is any indication of the untapped passion of people ready to work, this new linkedin community is going to get noticed.
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“i think [inployable] is going to be fantastic,” says sean. “i think levi’s of the age where if it is successful, it will be coming into his age of employment.”
the family moved from toronto to huntsville six years ago to be in a smaller community where levi might become known and recognized, which could help make connections and find a job. a large part of job-hunting is showcasing your personality along with your task-oriented strengths, and the adams see the platform as accelerating their son’s prospects.
they also say skills development and other services for people with down syndrome tend to drop off at age 18.
“[inployable] is going to play a really big part in the education of employers about how employable people with intellectual disabilities are in general, and showcase their personality as well,” sean says. “levi is a very charismatic young boy, funny, engageable. and he’s a really hard worker. he really likes to help out. so if this can become a venue where we can showcase that side of his personality, that will do well for a lot of people in his position.”
employees with down syndrome contribute equally, if not more
surveys published in the journal of applied research in intellectual disabilities suggest that more than 50 per cent of people with down syndrome struggle to find paid work, although 73 per cent of employees say that they strongly agree that their coworkers with down syndrome are contributing just as much as other employees, if not more, to their organization, according to human resources director. even employment and social development canada has a number of campaigns underway to making hiring more inclusive, pointing out that “disabilities don’t define talent,”. the restaurant and hospitality industry, for one, has benefited from employees who aren’t neurotypical.
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and while inployable serves as a much-needed central digital recruitment community to connect employers with employees living with intellectual disabilities, levi’s mom says that if the platform also highlighted successes it could be a game-changer.
“i watched a show about people who’ve hired people with intellectual disabilities and how great it was, and how one person worked at tim hortons for 20 years,” she says, sharing an experience she herself had at a local grocery when she lived in toronto.
“the only person whoever said hello and asked me if i needed help was the man that worked there with down syndrome, and he would do that for everybody. and i would tell the manager, ‘you know, he’s the best employee that you have.’”
it’s not an act of charity to hire someone with down syndrome
as a parent concerned about the future of her son, the most significant barrier to employment is the fear of the unknown.
“[employers] don’t take a risk or, to be honest with you, i don’t think they’ve thought about it,” says jessica. “it’s not on their radar to hire someone with down syndrome. but if you look at starbucks and other places that are short-staffed, they could be a great fit.”
laura lachance, cdss executive director, says the idea behind inployable was to change how employers view people with down syndrome and create awareness that it’s not an act of charity to give them a job. it’s a win-win that’s going to affect your bottom line.
“the narrative around hiring people with down syndrome that employers would consider their value is something that’s been long overlooked with traditional hiring practices,” she says.
not only that, research shows the cost-savings of lower absenteeism, lower employee turnover, higher motivation and a positive effect on staff morale that result from hiring people with intellectual delays.
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“this generation of individuals with down syndrome is probably going to be the first that will outlive their parents, so they’re on the cusp of living independently, being employed and improving their ability to be more self-sufficient,” lachance says. “so creating inployable as a way forward is something that needs to be done.”
she also talks about the traditional model of disability as a model of scarcity and poverty, and how inployable is transforming that model to one of opportunity and self-sufficiency. her son kevin, 30, lives in the basement “man cave” in the family’s collingwood, ontario home to have his own space, and he works at a family-run restaurant in town supporting the kitchen staff with stocking supplies and cleaning.
“he likes using his muscles and he’s part of a team, doing different things every day,” she says.
while inployable is still in its early days, lachance says cdss has heard from school boards who want to make this part of their curriculum to teach about digital profiles along with resume building. the organization has also been contacted by international down syndrome groups who are keen to learn more about how they could bring a similar networking community to their country.
employers have “a lot to gain”
centennial infant and child centre in downtown toronto has programs from infants to age five that integrate children with complex development challenges, like down syndrome, in classrooms with neurotypical kids. some of the kids, like jessica rotolo who has down syndrome, return to the centre for high school co-op placements as classroom assistants. now rotolo has a job as a paid classroom assistant.
“jessica is outgoing, enthusiastic, and she radiates an energy that is a perfect fit for our organization’s culture,” says executive director shemina ladak. “she’s a go-getter.”
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her responsibilities include greeting the children and families as they arrive at school, helping teachers set up classroom activities, toys and furniture, making sure that the teachers and children have the materials they need for each activity, and resetting everything as the day progresses. she also loves the kids and joins in the songs during the music circle.
ladak says potential employers have a lot to gain from these “valuable and deserving members of the workforce,” but you need to put in the time for some additional guidance and training.
“your new employees may need a few more accommodations than your existing staff to be set up for success,” she says. “you need more time, you need a mentor to lean on, you need some extra training, so it’s not as easy. and it shouldn’t be just a window dressing that you put on your website — that’s something i don’t advocate for. you need to put in the time.”
ladak says that moving to a workplace culture that is inclusive promotes an understanding of what equity is about, where there’s more open-mindedness, tolerance and creativity, which is great for everyone on your team.
“i can only really speak from our son’s perspective, but i think it’s fairly common among people with down syndrome is that they want to work, like levi wants to work,” says sean. “and there’s everything that comes along with that, the responsibility of having a job, the self-esteem that it brings, the fact that he’s earning his own money. i think those are all things that i can really see meaning a lot to him. so i think a lot of parents are like us — we really want to make sure that he has that opportunity.”
this story was originally published on november 22, 2022.
karen hawthorne is a toronto-based writer.
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