MAMA, WE’VE GOT THIS Being a disabled parent is a rebellious act. Disabled people should have the same right to parent as anyone else, but often when we decide to start a family we are met with judgement and discrimination. We are questioned rather than supported. We have to push up against the medical system, which is particularly problematic for disabled people. And we have to confront how ableist society’s model of parenting is, even in the twenty-first century. Yet, despite all this, we still choose to parent. And we are damn good at it too! I became a parent six years ago. I’d always had an innate drive to have a family. As a child, I wrote in my diary that one day I would have children. My parents always hoped I’d have children. When I told them about my desire to be a mother, not once did they discourage the idea; they were excited and supportive of me starting my own family one day. I have a physical disability, a neurological condition called Charcot-Marie-Tooth. It affects the way I walk. I fall over regularly and have muscle and sensation loss throughout my body. Lack of circulation creates freezing cold legs on hot summer days, and I am consistently fatigued and in pain.
8
When I first seriously considered having children, I spoke to my neurologist. I had the hugest smile on my face: at the time I was in love and elated just thinking about the possibility of children. I’ll never forget his stern and unforgiving look in response; he couldn’t hide his disapproval. Silently he wrote notes on his computer as I waited. After what felt like hours, he lifted his head, adjusted his glasses and began to flood me with questions. ‘Have you considered your options? As someone with Charcot-MarieTooth, you have a 50 per cent chance of passing on your condition. Have you looked into genetic counselling? We could do a panel blood test again? Do you think you will be able to manage?’ I felt like I was crumbling. Shame overcame me. We’re taught to trust medical professionals, so his words really stung. I’m used to discrimination: I’ve had people stop in the street and pray for me. I’ve been stared at and ridiculed. But this was far more insidious: this was someone in a position of authority, someone who I was supposed to trust, suggesting it would be best if I didn’t have a child in case they were like me. It affected me deeply. I can still feel the pain in my chest from that day; it flares again in moments of self-doubt.
