Disability

Being a disabled young adult in 2019

27th February 2019 /
Having a disability can shape your life, whether you like this or not, being a disabled young adult is no different. I think acknowledging how it can shape us is important in understanding the role it plays within our identity. I know everyone will have a different view on how much their disability is part of their identity, and that’s okay! I have lost count of the amount of times I’ve been asked a variation of this question, therefore it can only truly be answered in the form of a blog post!

“What’s it like being a disabled young adult in 2019?”

Well, I hope you’re sitting comfortably, this post has not been planned in advance and I’m not quite sure where we’ll end up. All I can tell you is that it’ll have highs and lows, victories and defeats, it will probably be quite unpredictable. 
If you replace the word ‘post’ with disability in the paragraph above then you have a pretty accurate summary of what it is like being a disabled young adult in 2019. However, that probably simplifies it a little too much. You see, disability is often simplified for the purpose of explaining things and making it easier to get a point across. Why not see it for it’s complicated, messy and beautiful component of a person? Yet even that is separating the disability from the person which is poor on my part. 

Every transition is a hurdle

Being a disabled young adult means numerous transitions to build the bridge from adolescence to adulthood. These transitions may consist of education, employment or even changing medical professionals! When you have a disability you can find yourself constantly having to explain or justify things to the people around you. I remember the transition from Sixth Form to university, the prospect of going from a place where everyone knew ‘what to do’ to a new environment where Cerebral Palsy was probably a foreign concept was terrifying. Each stage has led to new challenges, new hurdles and many more people who often doubt our abilities. In that sense, we seem to be fighting one system or another to get the support or to participate in a society that we are more than entitled to be involved with. If it’s not support to get into education it can be things to do with employment, housing or Personal Assistants.

You get very good at explaining your needs

Over the years I’ve become accustom to explaining what support I need to complete tasks and how I best can explain myself medically. Yet this isn’t something able- bodied young adults will have to do. As a disabled young adult you have to learn how to speak up for yourself. Being confident about your own needs is often the only way things get implemented, even if you pretend to be confident half of the time! Yes, support from parents is still gladly welcomed, but there is only so long before you need to stand on your own two feet. I have the explanation of Cerebral Palsy down to a fine art, with various versions ready depending on who I am talking to. Yet I think being so in tune with yourself doesn’t necessarily have to be a bad thing. Even at times when we are unsure what support we need, the skills to articulate our disability can be transfered into so many different elements of life.

The frustration of knowing how capable you are

I well and truly know what I can achieve, I also am incredibly determined to get there. However, there are times when the mind is willing but the body says no. Sometimes the disability wins and this is one of the most frustrating things EVER. My mind is just as capable as an able- bodied person. I also don’t see why I shouldn’t be able to achieve as highly, meaning stubborn Chloe makes an appearance. This means there is often the sudden realisation that I’m not able-bodied and unfortunately I can’t run round doing everything, despite giving it a good go! If someone says we are incapable of something this can serve as motivation to prove them wrong if we know it is within our abilities. Proving our abilities and worth is often a never ending process that can be tiring in itself. We want to show we are capable, even if this means we have to work 10 times as harder, yet showing too much capability can lead to others questioning our disability in the first place. Sometimes it would be nice to have that extra effort acknowledged…

Understanding the importance of self- care

Being a disabled adult, trying to fit in, progress in society and manage our health can be exhausting. Many of us have to pace ourselves to get through the day, to ensure are able to maintain some sense of normality. Self- care can be critical in helping us to do so. We’ll appreciate a hot bath or a snuggly blanket more than most and having to take those days to recover allow us to be more a-tuned to our bodies. Despite the stubborn nature to continue, sometimes enough is enough. We need those days to read a book, watch a film and recover from life. We understand that we’re not going to get very far without taking that time out to look after ourselves. Maybe everyone could learn from that? I’m not saying we’re perfect, I know I am guilty of pushing myself that little too hard from time to time. Yet if you’re looking for inspiration for the best pyjama and fluffy sock combo I know many people who could help you out!

So, what’s it like being a disabled young adult in 2019?

I believe this makes us appreciate the smaller victories in life because we can experience extreme highs of achievements or lows of defeat and frustration. A disabled young adult often just wants to be a young adult! We want to participate in all things joyful and exciting, yet also have many other competing demands that complicate matters. Balancing everything can be a challenge and it’s okay to have a break from everything just to focus on you.

Being a disabled young adult might be completely different in 20 years time, but what do you think it is like in 2019?

Join the conversation on Twitter @chloeltear or comment below!

~ Chloe x

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