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Being young, disabled and getting back my independence

In this article, disability blogger and Motability Scheme customer, Sarah Alexander, writes on the challenges she faces being young and disabled, and looks at how the Scheme has helped her reclaim her independence.

Being disabled can be really lonely; in fact in 2017 the charity Scope reported that 85% of disabled adults aged 18-34 felt isolated, and that one in eight disabled adults received under half an hour daily interaction with another person. They’re some pretty depressing statistics, but something I can completely relate to.

Disabled people are constantly facing barriers, from accessible spaces and transport to our physical health and wellbeing. The amount of times I had to turn down events with friends due to inaccessibility or being stuck in bed aching meant that people disappeared from my life because I wasn’t reliable.

It took me a while to recognise that it wasn’t me that was unreliable but my conditions and society. I had no control over my joints dislocating; it wasn’t my fault the lift at the train station was broken or the accessible bathroom in the bar was used as a cloakroom. I couldn’t change these things and if people in my life didn’t understand that then it wasn’t my problem.

During my late teens, I struggled a lot with my lack of freedom and independence. My best friend went off to university and I was battling with managing my chronic pain; spending time attending various hospital appointments and therapies. I felt like I was wasting my life, I felt like I didn’t belong anywhere and my one real friend that was (and still is) a massive support was off making a new life.

I relied on my parents for a lot of support; they took me to every appointment, picked up my medications, drove me anywhere I wanted or needed to go and never complained. I often felt selfish for being so dependent on them and decided I needed to take control of the things that I could.

After a few months, and a few tests, I passed my driving test and got my first car with the Motability Scheme. Almost immediately I felt free. It was silly but I could go anywhere, any time and not have to book in advance with my parents. They, of course, were cautious of me venturing out alone due to my chronic pain conditions but they accepted that I was an adult and championed my choices.

I could visit my best friend at uni whenever I liked, I went on weekends away with  my boyfriend, I signed up to study at college and eventually university which I’d convinced myself I would never do.

Looking back, passing my driving test and getting a car opened my horizons. My disability was still there, I was still managing that but I could also live again.

A few years later, as my mobility declined, I felt like I was losing that freedom I’d got back. I couldn’t go out for long periods and could barely walk with my walking aids. My vehicle was a lifeline but I could hardly use it because my health had deteriorated so much. People started vanishing from my life again (not my best friend, he’s always had my back), and I was too stubborn to accept that a wheelchair would be the only option to keep me as an active part of society.

The stubbornness didn’t last long because I wanted to live my life as much as I could. I tried a manual wheelchair but I required my boyfriend to push it for me as my shoulder joints are unstable and I tire easily, so that didn’t work. Plus, it also meant I still relied on someone else which was what I didn’t want. After a while I got a powerchair and my life instantly changed. That freedom I so eagerly wanted was back in my grasp and I wasn’t willing on letting it go.

My powerchair and wheelchair accessible vehicle (WAV) are incredible; I try to go out at least once a week to do something that doesn’t involve a doctor and I find it really breaks up the monotony of my every day, even if it’s just taking the dogs up to the country park or meeting a friend for coffee. I have the ability to do that and these little things make such a huge difference. I never take anything for granted and my independence is vital.

If you’d like to read more from Sarah then visit her blog at www.fromsarahlex.com

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