Square peg in a round hole? Challenging isolation and barriers

Shortly after my thirtieth birthday I became aware if a new and strong emotion – the desire to have a baby. Four months later, while at the cinema watching the film Titanic and feeling extremely seasick I knew that something had changed – I was pregnant! I was absolutely thrilled when a pregnancy test confirmed my suspicions. My general practitioner advised me to keep the news to myself for a few weeks. I have never liked being told what to do, so I went straight home and phoned just about everybody I knew! In general my family and friends responded positively to my news.

At the time, I worked in a disability led project that shared premises with two similar organisations. I felt certain that it would be helpful to speak to other women with first hand experience of disability and child rearing. I was extremely disappointed to find that of a combined female membership in the region of 350 women, only two had young children. A few women raised their families prior to acquiring an impairment and a small number of women wanted to have children but for various reasons didn’t at that time.

I experienced very severe morning sickness during the first five months of my pregnancy and had to be signed off work. By the time I felt well enough to return to work my pregnancy had begun to show. As a life-long disabled person I have become immune to strangers asking me questions about my impairment or life circumstances and usually have a stock of one-liner answers up my sleeve for emergency use. However I have to admit that I was totally unprepared for the barrage of questions, remarks and comments my pregnancy evoked in complete strangers. It seemed that amongst the general public there was a ‘no holds barred’ attitude to in terms of questions people felt they had the right to ask. Individuals openly verbalised their surprise at seeing a blind women who was pregnant. I began to realise pregnancy didn’t ‘fit in’ with the social stereotype of blind women…I liked that, I felt proud that I challenged society’s expectations simply by living my life the way I wanted to.

Intrusive, and in my opinion unnecessary, questions asked by medical professionals were harder to avoid, especially in the confined space of the antenatal clinic consultation room. I found my ability to care for my unborn baby being constantly questioned. I found myself on the defensive during antenatal appointments. As a first time mum I felt pressured to come up with solutions to problems that didn’t exist in order to quell health professionals’ unfounded concerns. By the sixth month of my pregnancy I had taken on the role of reassuring others that I would find solutions to problems as they arose. Again, I was conscious that I was an incredibly square peg that didn’t fit into the round shape of the maternity system. Information was not available in alternative formats. I requested mobility training and orientation around the labour ward, birthing pool area and postnatal ward. This was refused to due to staff shortages.

In preparation for labour I had developed a very detailed birth plan, I asked that everyone who entered or left the room should inform me verbally. The midwives who were with me during my labour were fantastic and they followed this instruction throughout my long labour. My abiding memory of my labour will always be squatting in the birthing pool, Enya playing softly in the background and a steady supply of gas and air! My son was born on Saturday 10th October 1998.

I had to quickly devise ways of working with a new baby. While in hospital I found it easier to dress and change him on the bed. I could get close to him and could be confident that he was clean and his clothes were on comfortably. A nursery nurse spotted me doing this. She stormed into my room, grabbed my baby and dumped him into the crib. Almost shouting, she told me that it was hospital practice that babies should be changed in the crib because if he rolled off the bed he would land on a stone floor. Her exact words to me were, ‘That would be murder!’ I tried to explain that I was blind, she just wouldn’t listen and in the end I couldn’t speak for a mixture of shock, anger and raw emotion. A health professional had just barged into my room, accused me of deliberately putting my two-day-old son in danger and possibly of wilful murder. My partner witnessed this incident in disbelief. He also tried to explain the reasons for adapting the recommended procedure for changing our baby. In the end we asked her to leave the room, my partner noted the nurse’s name and we made an immediate complaint.

Discharge from hospital was a welcome relief, however I was still to face the health visitor who persistently asked about how I was ‘coping’. I felt my ability to care for my son was constantly being questioned and scrutinised. I went overboard to prove myself as a mother, ensuring the house was immaculate at all times, just in case the health visitor dropped in on her way home. I began to wonder if I was being over sensitive, after all I had just given birth and my hormones were running riot. I asked my mother to attend a baby clinic with me to get a second opinion. My mother was shocked at the blatant nature of the questions asked and encouraged me to challenge the health visitor. Driven by the certainty that I couldn’t have anyone undermine my ability to care for my child in his presence I confronted the health visitor. An open and honest discussion cleared the air and eventually we developed quite a good working relationship. I felt frustrated that in order to have a working relationship with a degree of equality I had to assert my position and instruct a professional in the way I wanted to be treated – which after all, is to be treated like any other women.

The lack of peer support and opportunities to share experiences of pregnancy and early parenting with other disabled women combined to make my pregnancy and early days of parenting an extremely isolating experience. Almost two years after the birth of my son I still had significant questions unanswered: Where do disabled women access support and advice when deciding to have a child, during pregnancy and early parenting? Did other women experience similar attitudinal barriers amongst medical professionals or other people? Why do disabled women have such a low to no profile in relation to reproduction, childbirth, rearing and parenting? Why is information on sexual health, contraception, childbirth and rearing not available in alternative formats i.e. Braille, computer disk, large print or tape? Why are the needs of disabled women not recognised and in turn not accommodated by maternity services?

Determined to find some answers, I decided to take up a place as a postgraduate student at Glasgow University. I started my PhD on the day my son celebrated his second birthday. My work is focused in Scotland because very little research has been carried out with women in Scotland.

Prior to starting my research I felt that barriers disabled women experience in the decision making process to have a child and then during pregnancy and parenting were deeply rooted in society. As a disability activist I thought that the historic segregation of disabled women had played a key part in our exclusion from social roles. I spent the first year of my course researching the experiences of disabled women in four large institutions in Glasgow and Edinburgh between 1820 and 1990. I found that sadly many women spent almost all of their lives within an institution, with very restricted opportunities to participate in mainstream society. In order to ensure donations, institutions created pitiful portrayals of disabled women and with time they became stereotypes. These stereotypes of dependence and passivity influenced wider society’s understanding of disabled women and in turn our perceived capabilities to undertake any roles in society were eroded. Residues of these dependency stereotypes still remain in one form or another.

I hope to document how attitudinal and physical barriers impact on disabled women’s decisions and experiences of having and not having children. I recognise that many women do not aspire to motherhood and that for some, the decision not to have a child is a life-style choice. However, I am keen to document barriers to motherhood, for example the experiences of disabled women who may have been dissuaded from having a child possibly by medical professionals, family or friends; disabled women who may have been denied the opportunity to adopt a child as a direct result of discriminatory practice, prejudice and ignorance; women who have undergone medical intervention, for example drug treatment, not fully aware that it would affect their chance of conception. I also hope to document the impact of multiple barriers for instance, the combination of lack of affordable access to public transport, lack of accessible social venues and lack of access to paid employment may affect opportunities to meet prospective partners in the first place.

I realise that my research will only scratch the surface of issues experienced by women. However, I feel that as disabled women we have to make ourselves visible and by documenting our experiences we can effect change. My initial research has brought me into contact with a number of disabled women with diverse experiences. These contacts and the discovery of Disability, Pregnancy and Parenthood International have broken down my own sense of isolation in relation to parenting. I know my experiences are not just my own and that many women continue to experience isolation in their lives. By raising the profile of parenting as a human rights issue and sharing our experiences as disabled parents we will challenge and breakdown societal barriers for future generations.

Note: Hazel summarises the findings of her PhD research about disabled women and barriers to motherhood, in Disability, Pregnancy & Parenthood international, Issue 58, Summer 2007.

First published in Disability, Pregnancy & Parenthood international, Issue  38, April 2002.