Learning Curve #TBofBTT

by Claire Lewis (@SpinalNurse)

As an Able-bodied person I don't not profess to 'know' how it must be to live with a disability. However I wanted to share my learning curve as a 'professional' and how it has changed the way I practice.

From a very early age I've always had a notion of 'helping' people. (Don't groan I was young and didn’t have the vocabulary, I still don’t!) This first manifested itself at the age of 14 deciding my options for GCSE. At that particular time living in North Wales and keen on Rugby I announced to my family that I wanted to become England or Wales' Rugby Teams Physiotherapist. Nothing to do with the gorgeous men of course! To cut a long story short I wasn't academically gifted enough so after retakes and a slight career change ended up Studying my Nursing Degree at age 25. During my time as a student nurse a colleague suffered a spinal cord injury (SCI). Knowing nothing about SCI and not being stretched enough by my nursing course, I embarked on finding out as much as I could about SCI as I could. This led me to find a charity that takes people with SCI skiing (a real passion of mine) so I immersed myself in the world of SCI. Although being involved in healthcare for the previous 6 years I'd only really come across people who were ill. Going away skiing with people who were well but had a disability opened my eyes to a completely different world.

Initially, as happens with all Able bodied (ABs) on the course. I had the 'fear' the reality check, the 'this could happen to me at any minute' moments. It kept me awake for the first couple of nights. Then slowly as the week progressed I realised hang on a minute these are normal people just like me. They just happen to no longer be able to use their legs. THEY ARE NO DIFFERENT TO ME. And there it was Disabled people are NORMAL.

Obviously 10 years on I realise Spinal cord injury has lots of issues other than not being able to use your legs! What I found by sharing time with people, who were just like me, was the constant question. 'How would I want to be treated. I'm an adult and fiercely independent I can make up my own mind, Why on earth am I going to let someone else tell me what THEY think is best for me.
Naively I thought 'well people are more clued up about disability now' I couldn’t have been more wrong. Now a qualified nurse I cringe when I hear 'professionals' responses to people who have a disability. If so called professionals can't get it right what hope the rest of us!

I am the first to put my hands up and say I don’t always get it right, I don’t always know what is the best option to empower my patients to enable them to be more independent but when I don’t know I ask. I don’t presume or assume I know best.

I changed the way I practiced by very small steps really, nothing profound. I would be more aware of bringing things closer to the reach of a person on bed rest. I could observe closely during Drs rounds that the patient had understood what was being said and try to simplify medical jargon. I would ASK and SPEAK to the person. I wouldn't talk across them even if they were children and even if their parents/ partner/ family were dead set that I should be addressing them rather than the patient. I bloody well made sure my eye contact was with the person concerned. I asked permission from the patients. I asked what I should be aware of, how does their pain affect what they can do and how I hold/support them. How does fatigue affect them? Not to get annoyed because this morning she could do this but this evening she can't.

I know to many, this may seem like common sense but you only have to sit on a busy ward for 30 mins to observe it doesn’t always happen. Some of the ignorant comments from colleagues mouths at times has astounded me and taken every ounce within me not to bite their heads off. But to gently inform and enlighten!

Unfortunately it takes a lot of insight to know even a fraction of the problems and struggles people with Disabilities face every single day. I try to think ahead about what someone will need so that they don't have to ask it's just there or it just happens. Importantly understanding that like me everyone is different and what might be a good routine for one person totally doesn’t suit another. People don’t ask to be disabled, People don’t want to have to ask for help if at all possible. But sometimes you have to ask for help and sometimes it would be nice to have someone who at least doesn’t huff, puff and moan at helping. It's the least we can do isn't it? A little bit of understanding goes a long way.