‘You must be so caring’

April 21, 2015

You Must Be So Caring – What does the word care mean to you ? This blog by Ben Drew discusses the topic.


About the author: Ben Drew qualified as a learning disability nurse in 2000, Ben now lives in New York and is the founder of the specialist learning disability online learning resource Open Future Learning www.openfuturelearning.org

This is a story about the word care.


It is often said that your first boss is the biggest factor in your career success. For that reason I will always be grateful that by luck and good fortune I spent the first couple of years of my career working for an inspirational and pioneering leader in the field of learning disabilities called Gary Kent. Gary inspired me with passion and values for my work that has never left my side.


After working for Gary for about a year I spoke to Gary about how I could progress my knowledge and Gary pointed me in the direction of learning disability nursing. Later I would be accepted to study at Bournemouth University and three years later I was a qualified learning disability nurse. During my time working for Gary and over the period of those three years I became quite sensitive to the word care. I learnt that historically people with learning disabilities had been cared for. I learnt that care homes were places that often restricted people’s rights. But I also learnt that there was a better way. I learnt that no longer should people with learning disabilities have things done for them and to them. No longer should people be washed, dressed, fed, told where to go, and who to live with. Instead people could have choice, control, and independence.


Over time I became increasingly aware of how I used the word care, and in fact I came to resent the word and what it stood for. My feelings for this word were only magnified when I was outside of work and people would ask me what I did for a living. I would tell them that I supported adults with learning disabilities and a little bit about my work. They would take a deep breath in and then in a condescending tone of voice they would say “You must be so caring”. Then they would exhale whatever carbon dioxide was left in their lungs and give a small and pitiful shake of their head. While they did so their eyes would look at me saying, “You are an angel looking after those poor children”. I never mentioned children to them, but I just know they were making that misinterpretation too!


It would take every ounce of energy in me to not want to scream at the top of my voice, “I am not caring, and they are not children!”Years later I would meet and learn from another inspirational thinker called Dave Hingsburger. Dave would say to me, Ben, look over your right shoulder, and now your left (go on you try it, look over you left and now your right shoulder). See, no wings. The only thing you might see is an ass hole, and more than likely that is closer to the truth.


Ten years after becoming a nurse my wife became pregnant with our first child. As the birth date grew closer I would excitedly tell more people about our news. As I did so I would hear different versions of a mantra “oh Ben, this is going to change you”, “you see, you won’t be the same person”, “having a kid changes you”. I thought this was fascinating that this great event could change me, so I thought I would keep a little check on myself and see if I do really change.
In late January of 2010 my wife gave birth and everything changed. It was amazing, I was a father and I was as happy as any new father could be, so proud, so nervous of everything that lay ahead, but nothing had changed. I was still the same me. I didn’t feel I had changed. But then over the period of the first couple of months of Olivia’s life I started to feel something new.


It was a night in early spring and the weather was unusually warm. Olivia was in bed, and we had just gone to bed ourselves, and as I lay there in bed I thought, “I feel quite warm.” I was sweating slightly so I hung a leg out of the bed to cool myself down, and then I thought, if I am warm Olivia must also be warm and she is wrapped up in a swaddling blanket / straight jacket contraption that might have been designed by someone who had previously worked at Guantanamo Bay. Reflecting on how uncomfortable she must be I thought I need to fix this. I could go in and change her into something lighter, but she would surely wake up. I could turn on the air conditioning, but it wasn’t that warm and once left on she would soon be cold. Then I decided I should open the window. I turned to my wife and told her that I was going to go and open the window in Olivia’s bedroom, as it was quite hot. Half asleep she mumbled something along the lines of a “Hufggleberrber what you want”.


I carefully opened Olivia’s bedroom door and crept in. By this stage of parenthood I knew the workings of her bedroom floor like the back of my hand, which floorboards creaked, how much, and which ones were safe. Silently I made my way to the window and opened it. First I opened it all the way open, but then I thought no that is too much, as the night got colder this would make her too cold. So I pulled the window back in so is was no more than one to two inches open, just enough to circulate a little cooler air into the room.


Safely back in bed I lay there, and immediately thought of the ladder I had brought at the hardware store just two days before. The ladder would clutter the garage so I decided to leave it alongside the garages outside wall behind some bushes. And then I thought “Someone could be walking down our street see the open window, come up to our house, see the ladder, put it against that window, and take Olivia. I can’t leave that window open!”I sprung to my feet and crept back over the floorboards and carefully closed the window. Olivia would just have to be warm tonight. As I laid back into bed my wife stirred. “What are you doing now”, she asked. I said “Well I opened the window because it is warm tonight, but then I realized that I left the ladder alongside the house, and someone could take that ladder, put it up against the house and take Olivia, so I had to go back in and shut the window”, she starred at me with sleepy eyes and said “Ben you are losing your mind” and promptly went back into a deep sleep.


As I lay there I thought, am I, am I losing my mind. No I decided. The reality is that I never knew I could care so much about one person. All I am really doing is caring for our daughter. And then that word appeared again. Care. I paused and thought about it. The word I had hidden away for many years was back, but it had an entirely new meaning.


I now realize having Olivia didn’t change me. It just changed the way I thought about the word care. The fact is I have always cared for people, and especially for the people I have supported. But now how I think about that word has changed. I am now comfortable with the word in a way I never was before. I have peace with the word care. There is a big difference between being someone’s caretaker and caring about someone. It is ok to care. You should care.

So now when people ask me what I do for a living, and even though I am sure that often their minds are full of misinterpretations and misunderstanding, when they say, “You must be so caring.” I own it and say “Yes I am.”


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