No parent expects to have a child born with a physical disability. When I was born in the late 1970s, it was a delivery-day surprise. Ultrasounds were just starting to be done, and even then, no one could tell that the fingers on my right hand were not curled up but were, in fact, missing. There was also no internet for my mother to go to for answers or any online community for her to connect with. She was thrown into the deep end of parenting a child with disabilities when she had had no idea that she was even going to be swimming that day.
Today, parents of children with disabilities have some advantages my mother did not have in terms of access to information and advice, but they face the same questions and difficulties. As someone with a disability who was lucky enough to be raised by a mother who — in my biased opinion — got a lot of things right, here are six things I wish parents knew.
1. You need to be our champion from day one
When the doctor handed me to my mother, he said, "I'm so sorry, there's something wrong with your daughter." This is likely the way — whether during an ultrasound or at delivery — many babies with physical disabilities are introduced to their mothers. It's painful to know that in your first moments you were a disappointment. But my mother took me in her arms, looked into my eyes and said, "We'll get through it, babe." We know there's a period of adjustment, pain and, yes, disappointment, when parents first learn that their child is disabled. But we need you to be on our side as soon as possible, because not everyone will be.
2. We don't necessarily need to be "fixed"
Not long after I was born, a doctor suggested to my mother that they remove the bones from my toes and put them where my fingers should be with the hope that they would grow into fingers. My mother, thank God, said no. She was smart enough to know that he was offering to fix my more-visible disability in exchange for one that could be covered with a shoe. He was offering to allow me to look "normal," but possibly at the cost of my mobility. My mother said no, and she never looked back. As I was growing up, there was never any discussion of how to "fix" my hand, and I am grateful for that, because it made me feel accepted and loved for exactly who I was.
Some children can greatly benefit from assistive devices or surgery. But I would recommend that you follow our lead. If we don't feel limited by our disability, be careful to not make us feel like we should.
3. Avoid pity
When I would cry to my mother about my hand and ask her why I was born this way, she would often say, "God never gives us more than we can handle." She encouraged me to believe in my own strength and my ability to thrive. Although I am now an atheist, the sentiment continues to be powerful for me. Growing up with a disability means we are going to have a harder time in some ways than many of our peers, but it also means we gain a certain kind of toughness that only those who are considered "other" develop.
4. We are going to be teased — help us learn the right way to handle it
There's no way to avoid it — at some point, other children are going to make fun of our disability. When we become adults, we may no longer be teased to our face, but we will always be stared at. That's a difficult thing to accept, so help us figure out how to face it when we're young. My mother's method was to tell me that all of those people could go fuck themselves. She never let me think that they were right about me. She always told me that they were in the wrong and that they were not worth my time. And also, in case I missed it the first time, that they could go fuck themselves. I appreciated those words then, and I appreciate them now.
5. Not everything has to be about our disability
Disabled soccer camp! Disabled English classes! Disabled picnics! Being part of the disabled community is important for children, but sometimes we just want to be kids. Give us a chance to figure out how to make things work on our own.
6. Know that having a disability can be a gift
If I could go back now and be born with a "normal" hand, I wouldn't do it. Being disabled has made me who I am, and I kinda like that gal. It has also made me more empathetic, open-minded and accepting than I may have been had I grown up as an able-bodied, upper-class white girl, and I wouldn't give that up for anything. Most people with a disability that I know don't pity themselves or wish they were any different than they are, so don't parent us with the assumption that we do.