‘My voice is my biggest tool’: Holly, 19, who lives at our supported living service near Chesterfield, plans next steps: a psychology degree!

Holly, who’s 19, is ambitious.

She lives with a rare genetic disorder, known as Emery-Dreifuss muscular dystrophy (EDMD) – but doesn’t let that stop her living life to the full.

This summer, Holly moved from her parents’ house to her new self-contained apartment at our Lifeways supported living service, Sangwell House, near Chesterfield in Derbyshire.

Her parents live just 20 minutes’ away. But like many people at her stage of life, Holly was keen to live independently – while maintaining close family ties.

“I’m very fierce about being independent, about doing things on my own, and about breaking other people’s expectations of what I can and can’t do,” says Holly.

Holly knew that Sangwell House was the right place for her before she even set foot in the building.

“Staff immediately came outside and were really welcoming,” says Holly, recalling her first visit to the service. “I was just instantly like: ‘I like this.’”

However, the process of moving away from her parents’ house wasn’t a quick one. The first hurdle was finding a social worker to help Holly access funding for her support.

As a result, and with several more obstacles to overcome, Holly’s move from home to Sangwell House ended up taking 18 months.

Yet, determined to make the most of the time during the transition, Holly completed from home a Level 3 diploma in media and TV production at Chesterfield College, a course she passed with a ‘Merit.’

Freedom

Now Holly’s happily in her own apartment at Sangwell House, and enjoys the freedom she has to both direct her own support and take care of herself.

“It’s really good. I can be my own person,” says Holly.

“One of the things that I can get frustrated with is the fact that I have to rely on so many people all the time.

 “I moved here, and then, it’s like, oh, I have a bit of room where I can do my own care stuff, and I can be in control of my care myself.”

“Going from there to here was like ‘hey, I’m an adult now!”

‘Adulting’

Moving to supported setting with lots of independence also comes with responsibilities, which Holly calls ‘adulting jobs.’

“I’ve had to work out how to do my own bills,” says Holly. “Sometimes being an adult can be difficult, but I’ve loved it.”

Holly enjoys keeping in regular contact with her family, and her two younger brothers regularly come over to her apartment to enjoy fish-and-chip takeaways together.

And as her dad - seen in the picture above - is a truck driver, he often stops by and says hello on breaks from his journeys.

Next steps

Right now, Holly’s taking a gap year before her next step: a psychology degree at the Open University.

Holly believes a psychology degree will help blend her interest in media and marketing with a deeper understanding of what makes people tick.

She also thinks the degree will give her a greater understanding of how people who live with disabilities are perceived in society.

“I really like [studying] psychology because it helps me understand people around me,” says Holly.

Holly’s keen to use her voice to shine a light on life with a disability. She credits her mum for being her biggest advocate for her own independence.

“Growing up, [living with a disability means you’re] seen as different, or weird, or in a different category of society… People have these stereotypes. I find it interesting to find out the psychology behind that, and try and change their minds.”

“I have a condition that can be not very nice. But I have a voice, and my mum always says my voice is my biggest tool – and I use that, and I explain to people and I educate people [about my disability].

“It’s all part of it, and I enjoy it.”

Thanks for sharing your story, Holly!

About Sangwell House:

Sangwell House supports adults who live with physical disabilities, autism, learning disabilities, acquired brain injuries, and mental health conditions.

It’s made up of sixteen one-bedroom apartments, each with an open-plan living room and kitchen, and a wet room style ensuite.

Outside, Sangwell House also has an accessible garden with a patio.

The on-site team support adults to live independent lives – with support available when needed or desired.

Sangwell House is part of Lifeways.

About Lifeways:

Lifeways is the UK’s largest team of professionals supporting adults living in the community. 

Our extensive experience and national reach mean we deliver extraordinary support to adults, enabling them to live fulfilling and independent lives in the community.

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