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Being disabled is a full time job

Being disabled is a full time job

Being disabled is a full-time job ♿️ People rarely think about how much time it takes on a daily basis when you live with a disability. My daily routines take much longer than most peoples because I need help with everything. Everything from getting up in the morning to eating to whatever simply takes longer because of my disability 🌸 During the day I have a lot of disability-related things that I need to take care of. It can be things like doctor appointments, physiotherapy, lung exercises, and other activities regarding my health 😊 Then there’s all the paperwork. Paperwork to make sure that I have (and continue to get) all the disability aids and medical devices that I need. It takes a lot of emails, applications, and legal knowledge to make sure that I get these things, and sometimes it takes months, even years before it happens 🙄 Then there are my assistants. My assistants make it possible for me to live in my own home and do whatever I want. Having assistants means that I’m the boss. So I have to make work schedules, make sure they get paid, find solutions when they go on vacation or call in sick. I always have to have a Plan B and preferably also a Plan C 😊

For me, being disabled means that I’ve become pretty good at planning and organizing 😊 But no matter how much I plan ahead I have to be prepared to change everything and improvise. Maybe my wheelchair breaks down, maybe the car lift stops working or maybe something I’ve never imagined happens. And whatever may happen I have to deal with it. I’m not off on the weekends because my life goes on - there are no time outs 😊 So next time you come across someone with a disability, then think about how much time and effort they put into simply living their daily life - something non-disabled people often take for granted 😊

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My name is Louise and I’m a 35-year-old Danish woman with muscular dystrophy, SMA2. Despite being dependent on help from my assistants I’m living the best life possible.

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Louise

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Being disabled is a full time job

Being disabled is a full-time job ♿️ People rarely think about how much time it takes on a daily basis when you live with a disability. My d
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