My husband and I have Cerebral Palsy and we thought incorrectly that we would have difficulty conceiving, so my first pregnancy came as a bit of a surprise, though we were both ecstatic and the news was greeted enthusiastically by family and friends.
Sadly, the fact that a disabled couple were having a baby was met with incredulity and shock by the Disability and Maternity Services here in Ireland. I can honestly say that we were made to feel that we were the only disabled people in the country about to become parents. After a struggle I managed to secure a Personal Assistant for a three month period because I had had a C section and the service provider stipulated that the PA was only allowed to cater for my personal needs and in no way support me to fulfill my role as a mum. For example the PA was not allowed lift the baby out of her cot and put her in my arms or perhaps hold her securely while I bathed her. I had been told during my pregnancy that unless a permanent childcare solution was found our situation would become a child protection issue, so we employed a live–in nanny for 18 months, a decision which was not my own and which proved to be a complete disaster, because the nanny, while an excellent childcare provider consistently ignored my wishes. I felt completely undermined as a mother and as a result it took me a year to bond properly with my first daughter. Once we placed her in a crèche at 18 months our family unit strengthened from then on.
I contacted a disabled parent who helped me put things into perspective and gave me some renewed belief in my ability. She taught me techniques to lift, change carry and feed the baby. These techniques we honed and adapted to suit us. A physiotherapist in the Maternity Hospital also helped us find suitable ways to handle the baby.
Despite the obstacles we developed a variety of techniques for lifting, carrying, changing, and feeding our first daughter so that by the time our second daughter was born in January 2011, I was fully equipped and more than capable of looking after the new baby without any help. Indeed, at both of the girls’ 6 week checkup, it was remarked how strong their neck muscles had become due to our unconventional lifting technique and one pediatrician asked us for a demonstration with a view to recommending it to new parents whose baby’s necks were still quite floppy.
My daughters are now 3 and 5 years old. Everything we do with our children factors in our disabilities from day to day personal care, social activities to discipline. I have developed alternative ways of keeping them out of harms way through verbal training and rules. It seems incredulous that a small child will listen and heed instructions but I have never had to go to inordinate lengths to baby-proof my house. I would even go as far to say that disabled people make ideal parents because there needs to be structure and routine in many disabled people’s lives and children thrive on this.
For my children I know that having parents with disabilities will bring challenges both physical and emotional, and we aim to meet each of these head on. I hope that having disabled parents will make my children more open-minded and accepting of diversity. My older daughter is starting to be asked questions by other children but takes it in her stride and is even beginning to ask questions herself. She recently enquired whether she will use a stick when she grows up and seemed disappointed when I said no.
Since my daughters birth I have been contacted by other expectant disabled parents facing the same negative attitudes by healthcare professionals. Based on my experience there appears to be an automatic assumption that a disabled couple will not be capable of looking after and adequately parenting a child. Nor have they even considered the possibility of disabled people becoming parents in the first place as the lack of accessible facilities across Maternity Services demonstrates.
In Ireland there is little or no awareness of the needs of disabled parents across a range of service providers. In my case the health care personnel was just relieved that a permanent childcare solution had been found and we were no longer a problem. They at no time considered the detrimental impact the nanny had on my relationship with my eldest child.
From a social perspective, people are genuinely surprised when they realize who my children’s parents are. Yet, despite the lack of awareness I find there generally is a willingness to accommodate: The principal of my daughter’s primary school reserved a parking space close to the school gate for drop-off and collection and at the recent school show ensured that accessible seating was reserved for me and my husband.
Being a parent is not an easy task and dealing with physical and attitudinal barriers can make it even harder. However, it’s a decision I don’t regret and believe that the right to have a family should be enjoyed by everyone including disabled people, with access to appropriate support and services. In my view the provision of a PA and the whole philosophy of independent living is about giving people with disabilities the power to make choices in their own lives and should they need support to fulfil their role as parents this should be permissible under the remit of the service. I should point out that there is no direct payments in Ireland and ultimately the hours of support you receive and the tasks that can be completed is set down by the service provider.
While disabled parents across the UK are encountering difficulties at least DPN has a voice and some acknowledgement of your needs as a group. In Ireland, we simply don’t exist.
Written by Louise Milicevic