good practice
Meeting cultural needs
A disabled Asian mother from London, UK, describes the lack of understanding she experienced from health professionals during her three pregnancies and why she would like to see culturally sensitive support available for all women. The author wishes to remain anonymous.
Although our religion, Islam, says that any life in this world is from Allah and should be valued and treasured, misinterpretations are made.
Pressure to abort
Sometimes mothers who are disabled are pressured into having abortions, because professionals who should be looking at them holistically do not even understand some of the cultural and religious beliefs we hold and value. Sometimes this is due to prejudice on their part.
When I was pregnant with my third child, I had a kidney infection. Health professionals said that my kidneys were weakened and tried to pressurise me into having an abortion, saying that either the baby or I would die.
I just could not accept this as my spirituality and belief in my religion have taught me that Allah is the only one who decides about life or death, even for a fetus. To me they were gifts from Allah, so whatever my difficulties were, he would see me through this adversity.
Rather than being put in the antenatal ward with the other mothers-to-be, I was put in a urology ward with elderly people. I felt as though it was a punishment for not complying with their wishes. They did not work with me or value my cultural and religious beliefs.
I had a lot of fears about the medication that I was taking and whether it would affect my baby but nobody ever gave me any answers. When I asked if my asthma inhaler could affect the fetus, I was just told to try not to use it so much but that I'd have to use it if I was wheezy. It was very confusing. I felt that I was just being fobbed off. My concerns were dismissed. I wasn't given any proper information or signposted to people who could answer my questions.
With my last child, I fell pregnant while I was fitted with the contraceptive coil. The health professionals wanted to take it out but said that there would be a risk of losing the baby. For me, that would amount to murder and I refused. I lost a lot of blood in clots during the pregnancy and I thought I was losing parts of the baby. Little was done to reassure me. Towards the end of the pregnancy, I was given ultrasound scans which showed me that the baby was OK but I had to wait a long time for this.
Communication breakdown
I went through my pregnancies feeling so alone as my husband, who is from India, is very much a person who listens to and follows whatever the health professionals say. I didn't like communicating all my fears with him, especially when I was scared that either I or my child would not live.
I was not mentally or physically strong enough to argue with him and all my extended family about these issues. So I kept quiet and withdrawn in so many ways. How could I ever live with myself if I let them all push me into having an abortion? The voice of a disabled Asian woman is rarely heard. Thus it was far more important to carry this all by myself.
At that time, with my own vulnerabilities, I needed my husband to be my ally, but because life in Britain was all new to him, how could he handle this challenge?
Although my English is very good now, at that time there were certain words and phrases that I didn't understand. The medical terminology used by health professionals was confusing. My husband didn't understand a lot of what was said. The language barrier made it so much harder to question the authority of the medical professionals. They should use plain English so that people with English as an additional language can understand. It would also help mothers with learning disabilities.
The remarks from one of my first midwives still ring in my ears. She had no knowledge of our Asian customs, not recognising that once we are married, normally the demands are that you have a child, even if you are still a teenager. She used to say “You are a baby and you are having a baby”. I used to get so angry and told her to leave me alone, as it upset me that she did not have a clue about the life of an Asian woman. Now I realise that, at that time, it was the last of her concerns.
Culturally sensitive support
As a result of the traumatic experiences I went through when pregnant, I suffered postnatal depression for quite a while. I needed culturally sensitive support, somebody to understand my traditions, cultural and religious beliefs and how these impacted on my feelings and decision-making about pregnancy.
I started contacting voluntary organisations about five years ago, when I was diagnosed with a new condition. For many years, the system made me feel like I was the problem. Speaking to Disabled Parents Network (DPN) taught me about the social model of disability. It was the first time that somebody made me feel that the system was the problem, not me. It really empowered me to see my experiences in a different way and to have it acknowledged that disability is nothing to be ashamed of. DPN put me in touch with local peer support, which was very helpful but there is still a way to go for peer support services to meet the cultural needs of ethnic minorities.
In my culture, women get married from age 16 onwards and some are made to feel guilty for using contraception. There can be a lot of pressure from extended family to have children straightaway. Talking about these issues is taboo and women can feel isolated without peer support.
As well as being a disabled parent, I also have a disabled child. When I found out that my child was disabled, I wanted to explore our family roots. Disability is something that isn't talked about in our culture. It is kept hidden as though it is something to be ashamed of. I didn't find out that my husband had a disabled relative until many years later.
I am writing this article to express to other Asian women, who may have language barriers, that they could benefit from peer support, especially when they are new to this country and do not understand the role of all the individuals involved in their care during pregnancy and childbirth.
I would like to see culturally sensitive support from preconception through to parenthood available for all young women with or without a disability. Women from all ethnic minorities could benefit.
Disabled Parents Network. Tel: 0300 3300 639. www.disabledparentsnetwork.org.uk