Adolescence to twenties can be an incredibly turbulent time, when independence and self-image are at their most potent. I would not relive those years of my life for all the money on Earth, and so I was beyond inspired by the young people with various disabilities that I met whilst in practice, explains children’s health SNT editor, Desiree Deighton.
Conditions like Muscular Dystrophy and Spinal Muscular Atrophy affect the body’s ability to control voluntary muscle movement. This results in a need for assistance with personal care, hoisting, dressing, eating and sometimes insertion of gastrostomy tubes and/or ventilation.
However, conditions like these often leave the brain intact meaning that the individual knows exactly what they want, but cannot physically do it themselves.
I had not thought much about the mental health impact of having a disability whilst being this age, until the individual I was looking after squealed when the song ‘This Is Me’ came on, from the film The Greatest Showman.
“Social media is empowering these individuals to embrace their conditions”
They excitedly informed me that “this is the soundtrack to my life!” and as I listened to the lyrics it made the hairs on my arms stand on end.
“When the sharpest words wanna cut me down / I’m gonna send a flood, gonna drown them out / I am brave, I am bruised / I am who I’m meant to be, this is me. I’m not scared to be seen / I make no apologies, this is me.”
I could identify with this myself, but the realisation of just how difficult being a young person with a disability must be hit me hard.
Despite this, they live their lives so positively; skydiving, festivals, tattoos, pubbing and clubbing, internet vlogging and playing adapted football in their spare time, as well as attending college or university.
At home after their busy days they patiently and politely give their carers instructions of how to help them, “itch a bit to the left please? Sorry, now up”, “can you just pull my sock up?”, “would you be able to do my make-up for me please?”
Not to forget the all-important mobile phone duties of taking their selfies and updating their social media, all whilst trying to negotiate the latest model of phone and not invade their privacy.
“Can you scroll up please? Stop. That top photo, yes. Post it with the hashtag #disabledandcute!”
Social media is empowering these individuals to embrace their conditions, sharing pro-disability hashtags and connecting with others all over the world, forming strong friendships and support networks.
Fashion brands are beginning to reflect body-positivity and listen to these powerful voices by campaigning for pro-difference and pro-imperfection.
Advertisements for clothing lines featuring models of fluid gender, various ages, size, ethnicities, physical conditions and disabilities have caused sensation.
“None of these conditions are comparable, and I am learning new conditions every day that make my heart ache and head hurt from empathy”
Mannequins with stretch marks and vitiligo are also hitting stores to promote the #makeyourmark campaign, as the movement towards celebrating these ‘perfect imperfections’ progresses.
In 2012 30% of the UK population had a long term health condition, with 4 million of these also having a mental health issue (Naylor et al 2012). In 2018 this will be significantly higher, therefore to be aware of the risks of psychological distress is a key aspect of nursing care.
These young people have no choice about their condition, but giving them control over decisions and facilitating independence lets them embrace being themselves, aside from their disability.
Nurses from all branches will no doubt experience caring for somebody whose mind may be sound, in a body that does not respond how it once did, such as quadriplegia following spinal injury.
Or the opposite, like in dementia where the family may recognize their mother or father’s body, but not the person inside it.
None of these conditions are comparable, and I am learning new conditions every day that make my heart ache and head hurt from empathy.
The alignment of the body and mind is something that I reflect on frequently throughout my practice in children’s nursing.
Some may argue that this role is not ‘proper nursing’. I would say that there is nothing more person centred and therapeutic than empowering a person to feel valued, and help them to face the world to announce proudly…
“This Is Me”.
Naylor, C., Parsonage, M., McDaid, D., Knapp, M., Fossy, M., & Galea, A. (2012). Long-term conditions and mental health – The cost of co-morbidities).