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Seeing the ability and not the disability: why it’s time for society to unlock the potential of people with Down’s syndrome - Karen Roberts

In 2018, Sarah Gordy becomes the first woman with Down’s syndrome to receive an MBE.

Sarah, a 42-year-old actor, has appeared in TV shows such as Call the Midwife, and Upstairs Downstairs, and was honoured for her services to the arts and people with disabilities.

Then in 2019, Zack Gottsagen, 33, starred in The Peanut Butter Falcon, becoming possibly the first actor with Down’s syndrome in a film’s leading role. Despite movie distributors claiming that Zack was not a ‘marketable’ face, the production went on to become the highest-grossing independent film that year.

In 2021, TV history is made when George Webster, 21, hosts CBeebies, becoming the first BBC children’s presenter with Down’s syndrome. No on-air mention was made of George’s condition – and the presenter quickly found an audience with appreciative viewers across the country.

These three inspiring stories show that if you have Down’s syndrome, with the right support, opportunities, talent, and passion, anything is possible.

Long way to go

Yet there’s a long way to go to ensure people with Down’s syndrome – and other disabilities that affect learning – play a deservedly larger role in society.

Let’s look at the numbers.

Around 42,000 people in the UK have Down’s syndrome. Yet just 6% of adults with Down’s syndrome and other learning disabilities in England are in paid work, according to government figures.

And within that small group of working adults, around seven in ten work for less than 16 hours a week.

However, it’s not all negative news for people with Down’s syndrome who may wish to work. For example, the Down’s Syndrome Association runs a programme called Workfit, which brings together employers and job seekers with the condition. 

The view from our window

There’s an Eastern European saying which goes: everyone sees the view from their own window.

And what’s the view from our window at Lifeways? As the UK’s largest supported living provider, we support around 4,500 adults living in the community, some of whom have Down’s syndrome.

That means that as a team of 11,000 colleagues, we’re very privileged to see individuals we support achieve milestones of personal growth, independence, and positive change every single day.

Many individuals at Lifeways with Down’s syndrome require more support than others, who may instead live with family members, or without external support. However, every individual has the chance and opportunities to grow.

For example, Samantha, who’s in her thirties, moved into her own flat at our Coventry supported living service last year.

Previously, Samantha had lived in an environment where she wasn’t developing skills or independence. Yet within just days of Samantha’s move, her support team and sister noticed a marked change. Living in her new flat, yet close to other individuals, Samantha’s social skills quickly began to grow. She now keeps busy enjoying exercise classes in the garden, and is learning to cook.

Yet we’re keenly aware that not every organisation gets to see first-hand what individuals with Down’s syndrome and other support needs are capable of.

Sadly, misconceptions around Down’s syndrome and other learning disabilities are common.

People with Down’s syndrome have some level of learning disability - but the abilities and needs of each individual vary. Some individuals will be more independent, while others may need more support. Many individuals are keen and able to work, but don’t have the opportunity to do so.

And like everyone else, people with Down’s syndrome have their own personalities, strengths, goals, and aspirations.

Greater visibility

What are the advantages for employers who hire individuals with Down’s syndrome?

According to the Down’s Syndrome Association, companies that employ people with Down’s syndrome often report significant benefits, such as improved employee morale, as well as boosting how they as employers are seen and perceived by the wider public. Additionally, many people with Down’s syndrome – and other learning disabilities – thrive and perform best with a daily routine, making them reliable, punctual and dedicated employees.

Individuals with Down’s syndrome may also have a high degree of loyalty to their employers.

Greater visibility in society of people with Down’s syndrome is key for employers and potential employees with the condition to realise this largely untapped potential for greater participation in the workforce.

What’s more, offering the right support to individuals is vital to helping break down the barriers that people with Down’s syndrome may face when becoming employed.

This support may include more accessible training materials, communication needs, and any other reasonable adjustments an individual may need.

Two positive outcomes

There are two far-reaching positive outcomes – among many others – that can come from helping people with Down’s syndrome become more visible in society.

The first is to inspire individuals with the condition, and the people around them, who may have felt that they aren’t capable of reaching their goals.

The second outcome is for employers to offer opportunities to more people with Down’s syndrome. This will ensure success stories like Sarah, Zack and George become the norm, not the exception, and are commonplace on our screens, as well as in the wider world of work.

To help unlock the potential of people with Down’s syndrome in employment, individuals need employers who are willing to see each person for their skills and talents - rather than a person with disabilities.

Every organisation has a potential role in both being supported by and supporting individuals with Down’s syndrome. Let’s consider how each us can play a part.

About Lifeways:

Lifeways is the UK’s largest team of support professionals providing support for adults in the community.

We support adults with diverse and complex needs, including learning disabilities, autism, physical disabilities, acquired brain injuries, and mental health conditions. 

As the supported living sector’s largest team of professionals, Lifeways’ extensive experience and national reach mean we deliver extraordinary support to adults, enabling them to live fulfilling and independent lives in the community. 

Our 11,000 colleagues currently support almost 5,000 individuals who live in our 1,500 supported living and residential services across England, Scotland, and Wales. 

Find out more about how we change people's lives at:  

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