Hi everyone, so the other day I had a negative experience with a stranger and it’s something that I thought I should blog about because it’s certainly not the first time. I think it’s important we talk about these kind of experiences that instinctively one wants to push to the back of our mind. These interactions can be so painful. The one I’m going to tell you about made me burst into tears in the middle of a city center! I’m still embarassed about that. Unfortunately, there’s a strong possibility that at some point in your life you may have a similar instance, because of your medical condition. You may have already had one? We’d be very interested to hear about it and how you handled it, if you have.
Whether your mobility is mildly effected by your Cauda Equina Syndrome, or severly effected, discrimination towards people who are different is on the rise. Sadly, if you impede someone’s pathway (even slightly) it can be cause for harsh looks, swear words, people bumping into you purposely and nasty language. This is thankfully not the norm, I promise. In most places I have found people to be generous and kind. Even though it’s tempting, please do not let a negative encounter with someone or indeed the fear of a negative experience, stop you from wanting to go out of the house. However, I would suggest that you stay prepared in case an unfortunate interaction with someone does occur. I wasn’t prepared and it made me fearful of going out. I felt like a vulnerable child again.
So let me tell you what happened, I was in Primark looking through the racks, for a Mothers’ Day gift. It was pretty hard to navigate through the narrow aisles, (they are certainly not designed with disabled people in mind). As my Mum and I were making our way to the back section of the store a tall woman approached me with her two children. The children were adorable, the littlest looked about 4 and the eldest seemed to be about 7. They had the cutest little bobble hats on their tiny heads!
As the woman drew closer I saw she was laughing. I looked round wondering what was so funny, then it dawned on me, she was laughing at me. She was pointing at me to get the attention of her children so they would look too. “What the F*** is that?” she asked with a bellowing voice. I realised she was talking about the small amount of catheter tube that was visible leading from my stomach into my rucksack. (I have to have a large bag held in a rucksack currently, for medical reasons).
I froze, I couldn’t reply to her. I just watched her laughing and attempting to get her kids to do the same. Then when she didn’t get a response she walked off; it was over. I carried along the aisle, stunned. After a few minutes I found my voice again and I told my Mum what had happened. As the words came out of my mouth I couldn’t stop the tears from prickling in my eyes and rolling down my cheeks. I wanted to leave immediately so I could get home, I was stuggling with my pain and I couldn’t deal with being in public any more. We left, but not before my Mum tried to find the woman in the store. Luckily she was unsuccesful.
When I got home I thought of all these awesome comebacks, things I could have said to be a good role model to the children. I wanted to show them that my catheter is kind of amazing not something to be laughed at or feared. I felt sorry for the children, heck I felt sorry for the woman (what kind of life has she had to think that it’s ok to act like that?) But most of all I felt sad and alone.
The next day when I felt stronger I posted on my Facebook page about what had happened. I was laid on the floor to support my back, I had been for about 18 hours. As I read message after message of support and love from my friends and family my heart stopped being quite so heavy. Out of this dark horrible experience had come this overwhelming amount of compassion, love and acceptance. I knew right there and then I wasn’t going to let this stop me.
I wanted to write this blog to show you how I dealt with my experience and I hope that helps you in your time of need. I really hope you never have to go through such discrimination, but if you do, all of us here at the CESA are here for you. We are trying to reach out to communities that need the most guidance in disability intergration to provide education to prevent these hateful moments from ever happening again.
Until the next time,
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