As you may imagine, using a powered wheelchair full-time and having two relatively young children turns a lot of heads. Some people live so much in the dark age that even seeing a wheelchair user on a bus is worthy of a good gawp, put a child on their lap and you are inclined to get 1 of 2 reactions;
a) You become an inspiration to all and put on a pedestal for all to be in awe of.
b) They act as if you have no rights at all, especially not to have/raise a child.
7 years into parenting with a complex muscle-wasting condition, I have been questioned by total strangers more times than I care to remember. Always the optimist, seeing every approach as a learning opportunity on their part, I’ll answer very matter-of-factly, however, I couldn’t help but notice the general public seem to be out of new things to ask parents like me.
For your facepalm entertainment, let’s take a trip down memory lane of Mummy turtle’s public encounters of the strange and scary assumptions, misconceptions and pushy opinions. I assure you, you’ll be shaking your head in utter disbelief at this lot by the time you reach the end!
1. “How did that happen??”
My Response: “How did what happen?” The lady gestures to my daughter in her pram. “Well, when two consenting adults love each other….”
What I’m actually thinking: REALLY??
2. “Are they yours? Like biologically?”
My Response: “Yes” I respond proudly and then leave them to figure out the logistics.
What I’m actually thinking: Well done for answering that amicably if I’d of asked that to an able-bodied Mother I doubt I’d of lived to tell the tale!
3. “I hope you don’t mind me asking but, were they an accident?”
My Response: “No, I don’t mind being asked things. I like to educate people and promote awareness that disabled people CAN and DO go on to have families if they so wish. My eldest daughter was a surprise pregnancy, my youngest was planned but both SO incredibly loved and wanted.”
What I’m actually thinking: Many women get pregnant by ‘accident’ but that doesn’t mean that baby was unwanted once the Mum-to-be had time to digest the news.
4.”I bet she helps Mummy a lot, doesn’t she?”
My response: “Actually my daughter helps no more with family life/with her baby sister than any other older sibling. She has a reward chart for doing age-appropriate tasks around the house and passes me the wipes when her sister needs to be changed. I have people I hire to help me do things I struggle with because I refuse to let my children become young carers”
What I’m actually thinking: Right Fi, keep your hair on. I know you feel strongly about this but it probably wasn’t meant like that.
5. “Don’t you think it was a selfish decision to have children?”
My response: “I can see why you may think that but despite popular belief, a study found children who grow up with a disabled parent were often more compassionate, caring individuals and have a better ability to think outside the box when problem-solving. Life skills that I can already see building in my girls now, even though they’re still quite young.”
What I’m actually thinking: This question stings and takes me back to my darkest days when I really have struggles. Being called “selfish” for living your life reflects to back in the day when people with disabilities didn’t have a right to do much at all. Somehow, when it comes to us having offspring, we still are in the stone age.
6.”Is your condition genetic? If so, have your girls inherited it?”
My response: “Although I don’t find it an appropriate question to ask someone you’ve known for the duration of a bus ride, I’ll answer to aid your understanding. Yes, my condition is genetic. My condition is incredibly rare and its genetic findings are not totally understood. I responsibly sought thorough genetic testing and it was determined the inheritance pattern in my family is recessive – meaning it is highly unlikely to be directly passed on. My girls have no signs or symptoms of MD.”
What I’m actually thinking: I should seriously just not answer that…
7.”How do you look after them if you can’t look after yourself?”
My response: “This is a very broad question with many outlooks. I had the very same concerns when I was pregnant with my eldest. Thankfully as I’ve been disabled all my life, adapting is second nature and it shouldn’t be assumed just because I need help to use the bathroom (for example) that I cannot change a baby’s nappy. Both tasks require totally different physical abilities. Determined to be the one providing my children’s cares, I learned to use baby products on the market and some creativity to meet their physical needs despite my limitations. They may not be common practice but they get the tasks completed safely and mostly without assistance from another person.”
What I’m actually thinking: I really wish I’d of had someone record me feeding, changing, etc my girls as infants to just show people because in a way it’d be so much easier.
8. “What can you actually do for your children?”
My Response: “The shortest way to answer this is by telling you what I can’t do with/for them and that is lifting them. I stopped being able to lift both my girls at 1 month old, even premature and weighing just 4lb each at birth, I struggled and this is due to my global muscle weakness from the Muscular Dystrophy. It doesn’t just affect my ability to walk. So, any task that involves lifting baby or child is either done differently or I need help from another person with.”
What I’m actually thinking: I’m hoping people see both the reality of being unable to physically lift my children but at the same time understand we’ve found ways around this.
9. “How involved in your children’s lives are you?”
My Response: I’m always unsure what people actually mean by this so I either respond with; “I play an active role in my children’s lives the same as any other Mother. I do all that I can with and for my two girls and pride myself on finding ways around my limitations to complete tasks independently without as much help from my partner or PAs,” or “I have full custody of my children and play an active role in their lives the same as any other Mother.”
What I’m actually thinking: I really hope I don’t come across offended, even if I am a tad!
10. “How do you get around with your children?”
My Response: “We don’t have a car/adapted van so we utilize public transport or if it’s within walking distance – we go on foot which is good for all of us!”
What I’m actually thinking: Many people automatically assume we have an adapted van of some sort on the Motability Scheme and are quite surprised to learn we go on the bus, train, tram or taxis.
I hope you found this post humorous, yet informative. It’s important that we encourage people to ask questions about things they don’t understand or have been exposed to in their own lives – such as parents with disabilities. Most don’t ask to offend us after all, they are actively seeking to understand and we must use that as an opportunity to spread awareness in a positive way. Otherwise, societies negative perception won’t change and the stigmas we see surrounding disabled parents can’t be challenged if we are closed off to being part of the change.