I spend a fair bit of my time talking online with parents of disabled children. Especially parents of congenitally blind children, like mine. My disabled friends and I go into these parent spaces to offer hope and resources. Sometimes, though, we encounter statements that can be triggering for us. Parents describe feeling “devastated” upon learning that their child is like us. And, often, they describe feelings of grief.
When someone becomes disabled later in life, or their disability progresses, grief can be a natural response. Acquired disability comes with losses of functionality, and a loss of nondisabled privilege. It makes sense to me that family members of those with acquired disabilities will also grieve the losses of things their relative was once able to do or enjoy.
Grieving disabilities that start at birth, though, is something that seems less intuitive to me. It’s not necessarily bad, but it takes a little more unpacking.
I was ten years old when I first learned about my parents’ grief they felt after my diagnosis as an infant. I won’t go into their story here, because it’s their story, not mine (and they’ve told it elsewhere). But, learning about my parents’ grief made me sad. I was a good girl who wanted to please my parents. And I wanted to believe that my birth was nothing but a joy for them. A little self-centered perhaps, but I was ten. It was painful to hear that my parents were disappointed by something about me that wasn’t even my fault.
As an adult, I’ve come to accept that it’s not all about me. And, I am grateful that my parents moved beyond grief in their own way. But, it still pains me to hear other parents say they grieve when they have a child who is born like me. I wonder, What exactly is it that they’ve lost?
This issue of grieving congenital disability came up recently on the Disability Wisdom Discussion Group. In that discussion, a few parents affirmed that parental grief is partly related to societal misconceptions about disabilities. But, they also said that some of this grief could be experienced by all parents. Because, they said, parents have high expectations for their children’s futures. They have dreams at the outset that, disability or no, can’t always come true.
I thought about my own experiences of grief. I grieved when my grandparents died. I’ve had similar feelings, though less intense, when I had close relationships end. Those losses were clear. But I also felt grief when I had grant applications rejected. When you write a grant, after all, you are building up expectations of what a new project will be like. You have to dream up a budget and a list of deliverables that will emerge from your project. So after you’ve done all this, and get a (sometimes bluntly rude) rejection decision, it feels like a project was lost, even if that project wasn’t ever actually a thing in the first place.
Of course, expectant parents do the same kind of thing. They name the new baby. They dream about experiences they will share with the child. They build up expectations. If those expectations aren’t met, they feel a loss.
I thought about the expectations I had for a spouse. When I was in college, and first getting involved with disability rights, I swore that I would end up with a blind man who shared my passion for blindness advocacy. It was such a big part of my life that I couldn’t imagine not sharing that in common with a partner. I dated a few blind guys who did, indeed, share that passion. Then I fell in love with somebody who is sighted, and while he is passionate about disability justice in his own way, he’s not big on the NFB events.
There was a point when I did feel a sense of loss at not having my husband go with me to all the banquets and other big blindness things I attend. At some point, though, I realized that it was unfair to expect that of him. Finding him was a gain, not a loss. I shouldn’t impose my own expectations on our relationship.
It’s natural to want the best for children before they are born. But, perhaps we can broaden our idea of what a positive future might look like, and acknowledge that disability can be a part of that. Children will not always share all of their parents’ interests, and in the same vein, children may not share all of their parents’ abilities. But no matter what, their birth is still a gain.
I want to see a day when having a disabled child isn’t such a surprise. It just is, and it’s something we expect could happen. And there may be sadness related to the hard parts of disability, the medical needs, the challenges or the exclusion. But, what if congenital disability wasn’t seen as a loss or a subtraction, but just something we come to expect and embrace in a subset of the population?
I do agree with the parents in one important way. Providing accurate information about disability experiences is one way we can help mitigate some of the grief that new parents feel. By offering information and hope, we can not only help reduce the grief, but also help equip parents to move past it to a point of acceptance. That is why I stay in the parent spaces, if they’ll have me, and that is why I post on this blog. I hope that by sharing my own experiences, and amplifying the voices of other disabled people, we can redefine the meaning of disability for the generations not yet born.