A day in the life

Carla DiRosa from Parma, Italy, describes her typical day. Interview and translation by Maria Uno.

I wake up slowly and wish I had slept better. I have painful arthritis since I was 20 and the mornings are the worst. My children (two girls 11 and 8 years old) know that I do not want to talk too much when I wake up and I hear them chattering away to their grandmother who lives with us. I spend the first hour of my day doing a long programme of exercises that were specially designed for me by a physiotherapist who had travelled to China and the east and learnt more about the human structure. I do not like starting the exercises but as I get into them I feel better and better.

By the time I greet my daughters I feel happy to see them and to talk about our day ahead. The eldest is as tall as me and she is very serious about looking after her mother but they are playful with me too. Their father died two years ago in a road accident and I believe they are sometimes very scared in case something takes their mother away too. I try to be light with them and they are surrounded by the love of many uncles, aunts and cousins not too far away from us.

But we all miss their father very much. He adored his beautiful princesses and was always very helpful in looking after them. He never made me feel bad about my illness, even though I could not do well many of the things a wife and mother should do herself. I could not even make the beds without help. He said that it was just as well I had a beautiful voice because I could sing to our daughters to soothe them in their little beds even when I could not lift them out as babies.

My mother had arthritis too but it was in her hips. My brothers and I were born by Caesarean operation. When I had my girls the doctor delivered them in this way too. But it is very normal now so I did not feel special because of my illness. My mother-in-law was at home to help look after both my daughters when they were babies so I did not look for any more help. In Italy we do not have many sorts of state help anyway for disabled people.

Outside my house I have a beautiful garden that I look after. I like to spend much time there. It is like a baby to be nourished and it brings me calm. I do not like to go out too much on my own because I worry that people will bump into me and cause me pain. I am like a fragile glass doll. The roads in our town are very bumpy so going in the bus or the car is not very comfortable. Of course I do go sometimes but I have many friends who bring things for me. The vegetables and fruits are brought by the shop owner everyday to my door. He used to be at school with my brother and never even needs to ask me what I like to buy!

The girls bring home lots of gossip from school and from their friends. It is like a party when they are at home - they always have many friends coming to visit them. It keeps me in contact with what is happening in the town.

I worry a lot that they will also be ill with arthritis. The doctor says don’t worry maybe they won’t or if they do it might be curable by the time they grow up. But I worry any way. They are such beautiful girls and I want them to have a life without my pain.

Last year I went to visit my sister-in-law in Detroit, USA, and she showed me in the newspaper about the disabled people in America fighting discrimination. She told me that there was a new law (the Americans with Disabilities Act) that would help more disabled people get on in life. We do not have anything like that in Italy and I found it very uplifting to think that there are so many people with different conditions who are getting together to change things.

Before I went to the USA I had always believed it was only my problem that I was disabled. I did not think about discrimination because when the doctor asked me why I was having babies, I thought maybe he was right to ask. Now I see that my condition is also affected by the society we are in. I have begun to discuss these ideas with my daughters.

In the evenings after our dinner we often sing together, old songs from many years ago which I have taught my daughters too. When I go to sleep I feel lucky that I have a good family around me that keeps my pain less.

First published in Disability, Pregnancy & Parenthood international, Issue 4, October 1993.

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