Like any 23-year-old, Olivia would love to move out of the family home and live independently. However, discussions with the local council have made this seem like a faraway dream. Olivia shares what it would mean to her to be able to move out, how Muscular Dystrophy UK have been helping the family fight for Olivia’s independence, and why the family home is completely unsuitable for her needs now.
“I’m often stranded in my bedroom because my lift breaks” – pleading for accessible, independent living
I’ve recently finished my degree in Sociology and work part time at a youth club, which I really enjoy. I’m taking a year out of study before I hopefully begin a postgrad in social work. I’d love to work with disabled people in the future, because I know what it’s like when the system doesn’t listen to you.
I’d describe myself as a girly girl — very sociable, independent, and full of energy. But you wouldn’t know that if you saw how I have to live.
Feeling trapped in your own home
The house I live in was adapted when I was 11, and it worked then, but now it stops me from being independent. I want to be able to make a cup of tea, cook my own meals, go to the bathroom when I need to. But I can’t.
The lift in our house breaks almost every other day. If it breaks while I’m upstairs, I’m stuck in my room for hours. If it breaks while I’m downstairs, I can’t get to the bathroom. When my mum is at work, I can’t risk not being able to get to the toilet, so I have to stay in my room for the whole day, and my mum leaves me a packed lunch like I’m back in school. It’s degrading, and frustrating, because I can do these things… just not in this environment.
It’s hard on mine and my mum’s relationship too. When I have to rely on her for everything — even getting a glass of water — we inevitably get at each other sometimes. I’m an adult. I want to live like one. And she shouldn’t have to do all this for me anymore.
I’ve had a taste of freedom and it was amazing
More than anything, I want a place of my own. I’m financially stable — I work part time (because that’s what my health allows) and my income is topped up with Universal Credit. I don’t rely on my parents for money at all, so why should I have to rely on them to put a roof over my head?
I’ve looked into buying my own property, but it’s a Catch-22. Because I work part time for health reasons, I can’t save enough for a deposit. And with Universal Credit, I’m not allowed to have too much in savings anyway. So I’m stuck, not earning enough to buy, and unable to access suitable housing through the council.
I know I can live independently and thrive. I lived away during my first year of university in adapted housing and had carers come in to support me. I was able to cook for myself, get my own drinks, be social, and just feel like myself. That experience showed me what freedom and independence can feel like, and I want that again. Being confined to my bedroom most days can get pretty depressing.
Constantly telling people what you can’t do really gets you down
We started this housing process at the beginning of the year, and it’s been one fight after another. To get considered for a property through the Housing Executive, you need enough points. But despite everything: being stranded in my room when the lift breaks, not being able to use the kitchen or bathroom, the danger of the main road… none of that earned me any extra points at first.
It feels like I’m constantly having to justify why I deserve a safe home. I have to collect proof for everything, submit letters from occupational therapists, GPs, social workers. It’s stressful. And honestly, it’s exhausting to keep telling people what I can’t do, when I know all the things I can given the right environment. I’d say I’m quite a positive person, but it really gets me down. It makes me feel like I’m set up to fail.
Muscular Dystrophy UK are the only ones who have said it’s not right
One of the few bright spots in this whole process has been Muscular Dystrophy UK’s Northern Ireland Advocacy and information Officer. He’s been incredible. He helped us understand the housing points system and sent a letter to the Housing Executive, explaining exactly where I should be getting more points based on my situation.
He’s the only person who’s really stepped in and said, “This isn’t right, and I want to help you change it.” His support has made a huge difference, not just practically, but emotionally. Knowing that someone believes I do deserve better means a lot.
Right now, it’s a waiting game. There’s no alternative option, no plan B. But I keep hoping. I want to cook for myself when I’m hungry, not when someone gets home. I want to invite friends over without worrying about access. I just want a home that fits me so I can get on with living my life.
