Dear Bug… So You Are Disabled AND a Mother?

Dear Bug… So You Are Disabled AND a Mother?

When I first became unwell in 2006, I was embarrassed to use a wheelchair. It reminded me how much my body was failing me, and I felt like everybody was watching me. I only managed to get out in the wheelchair a few times, and most of the time it was to go two minutes down the road to the doctors. My brother, Tom, had wheeled me down there and was being the typical loon, as he tried to speed down the road. A woman had looked at me in horror, and I immediately felt self conscious. I didn’t want to be a teenager stuck in a wheelchair, I just wanted to be living life with my friends.

I started to deteriorate at an alarming rate, as I tried to desperately push my body to get better. Alas, it didn’t work. I became housebound and a few weeks later after another infection, I became bed bound too. When I lost everything, I realised that a wheelchair would actually be an amazing freedom, rather than the prison I had first thought of it as.

I suddenly understood that a wheelchair could be my key to reach the world. Yet, it was now out of reach. Soon, my movement left me and I felt what it was like to really be imprisoned by your own body. I spent the next decade dreaming of being able to get into a wheelchair. I had decided what the colour of my wheelchair would be, what I would call it and the type of accessories that I would use. I was transfixed by the idea of being able to go on a wheelchair ride on the Green next to my house. I wanted to see the trees and the grass.

Something as simple as seeing my garden, felt like a level of freedom that I was desperately yearning for. It took many years, but finally, once I had left hospital and had managed to be transferred into a chair, it was time to look at a specialist wheelchair.

From the moment I first sat in my recliner wheelchair, I felt on top of the world. I was oblivious to people looking at me, and when I was wheeled around, a broad grin filled my face. I had lived through a prison, I marvelled at the smallest things, from the birds in the trees to the sun in the sky: it was all incredible! Neighbours around the village that I lived in, were so thrilled that I was out in the air, that my infectious smile would then spread across their faces.

A couple of years passed since the first time I came out of my house, and I have noticed that people have started to stare with curiosity at me, but for a different reason. Before, I was a disabled person, who had to have someone push me about. Now, I am whizzing along the village in an electric wheelchair, chatting with my carer or my husband, Samuel. It used to be easy to see that I couldn’t move for myself very well, whereas now, it is different.

Since having Felicity, I have tried to venture out of the house as much as possible. I have been proudly holding her on my chest with a wrap, and I have found that I get more stares than I have ever had before. I was coming out of the doctors, when a lady stopped me to say that she thought ‘disabled people should just die’ but when I said that was a little unfair, she said it was ok for me because I could move. I passed a car with a family all seated in it and they stared incredulously, as they watched me hold my daughter, whilst sitting in a wheelchair. All I could ponder about was why they had even felt the need to stare at me. Was I doing something wrong?

This has happened a few times, and I questioned a lady I met down the road. She seemed bemused that not only was I in a wheelchair, I had M.E. and I had a baby… whatever next?! In society, it is unusual for us to see disabled people holding onto their baby. In the chronic illness world, it was madness to think that having a baby would be an option. I get it. It is strange.

When I first saw my community midwife, she tried to contact social services, as it seemed she doubted my capabilities of being a disabled mum and the strain this would have on Samuel. I understand that things can be a bit more challenging if you are disabled, but it shouldn’t mean that a disabled parent should be scrutinised before they have even started to see if they can look after a tiny human…

However, I think we should be challenging society’s interpretation of what it means to be ‘disabled’. When I ride along a street, and people stare at me, I smile at them. When I go down the street and people feel sorry for me, I smile at them and ask them how they are. I am not sure what makes people feel that I am any different to them. I may sit down more than I stand up, but I am still a human who is trying to live life to the best that I can within my small parameters.

It really interests me to know how people perceive disabled people to look like. It seems to me that it is all about people looking different to the view of what a disabled person looks like. I did an experiment, and tried going down the street in my wheelchair with Samuel holding Felicity, and then I tried again but with me holding Felicity in a wrap. Interestingly, when I was holding Felicity, people would give me a quizzical look before smiling, and when Samuel was holding Felicity, people would tell him he has his work cut out looking after us both.

The reality is that I am just an average young lady. I have always wanted a family of my own, but I have had to fight for it to happen. I have made more sacrifices to get where I am today than many of my able bodied friends. I value absolutely everything in life, and I even find it amazing when I can get my daughter some milk from the fridge, rather than feeling helpless.

I hope that in the future, we can breakdown the barriers that are put in the way of disabled people. I wonder whether, if I was able to walk around, but was still ill with my invisible disease, people would treat me any differently to how they do when they see me in a wheelchair… I see an experiment that needs to be made!

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