On Grief, Expectations, and Congenital Disability

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.

10 thoughts on “On Grief, Expectations, and Congenital Disability

  1. Maybe the grief for parents is also about fear related to how the world will treat the disabled child and less about the child. I think where parents get stuck is how to express this in a child appropriate way. Hopefully most people wish there was a less discrimination in the world but the reality is right now that discrimination (while less so than in years past) is still a very real thing.

    1. I agree. I think that is a real concern, and it’s separate, though related, to grieving the child’s disability itself.

  2. Amazing post, Arielle. Thank you for your honest and thoughtful reflection that truly honors both experiences.

  3. Beautiful post. Thank you for sharing your experiences and insights. Our son began losing his sight unexpectedly at the age of 10, it was a huge shock and there was a lot of loss and grief. However, once he learned to do things in a new way, life is fairly typical now. The unknowns about his future were the scariest parts in the beginning and we are so grateful to all the people with sight loss who stepped in to show us the way forward. Thank you.

  4. Its about expectations. Theres a story about planning a trip to Italy. You read up on it, pack for the trip, plan what you’ll do and learn Italian. But your plane instead takes you to Holland. It’s still a lovely place. But you’re not prepared. You learned Italian. You didnt read a book about Holland so you dont know what to expect there. It helps to have a guide help you travel thru your new country. Look for support groups who can guide you. Most people do not know a visually impaired child. They dont know they can have normal expectations- within limits. They need a travel guide.

  5. Wow something I needed to read right now at 3:30am while feeding my newborn who we just found out is blind. I can say I absolutely used word devastated and currently in therapy to learn to accept her disability. Like you said its not so much her disability it’s my Hopes, dreams and expectations that I’m grieving and my sadness of what she will be missing out on. Some of my favorite things to see, Christmas trees, mountains, snow falling her family’s faces or even her beautiful nursery. I’m terrified of the struggles and how people might treat her or stare a little too long and how to be the best mother to her. Thank you for posting

    1. Andrea, Congratulations on the birth of your newborn and thank you for reading! I hope you might take comfort in some of the other posts on this blog that demonstrate the richness of my life and the lives of others who are blind. Best wishes on your journey!

  6. I am an older parent of a disabled child. All I can say is have faith. Having a family is a lifetime journey. My daughter can not live alone, so I live with her, the three grandchildren and the frequently present father of two of the grandchildren. At age 38 she found herself a job on line. Now, as I make less, she is making enough to pay several bills. I am so lucky. I know dozens of older people who are isolated, whose children contact them twice a year. I have interesting conversations every day: okay we might talk about some comic character, but it is adult ideas regarding the character. I know my grandchildren well and they are kind to me. They have learned altruism through dealing with their mother when she has a bad time. My advice: give it time. This wasn’t what you expected, but it might be better in the long run.

  7. I am reading this very late, but appreciate your post all the same. I am conflicted though. As a parent, having typically developing children and disabled children. I feel conflicted about many of the messages centered around children with disabilities. Particularly the one around wanting more for them. Almost as if wanting more for my child’s development means that I don’t love them. I feel confused by the narrative, “just love them as they are” while simultaneously being told to “put them in therapy” and “get them the resources they need”.

    1. Thanks for this comment! I think it’s a balance, but it’s possible to give children “therapies” and “resources” that affirm and augment who they are rather than “fixing” them or trying to turn them into the nondisabled children idolized by society. For example, getting a blind child a cane and early braille instruction is affirming who they are and providing them education that is different, but equivalent to, the education given to a sighted child. That is a positive thing. Signing said child up for repeated futile surgeries to try to save vision is an entirely different thing–that is trying desperately to change the child into a different, sighted child erroneously favored by society. These surgeries will likely cause trauma and are generally unlikely to actually meet their goal (restoring full sight). “Therapies” with an end goal of eliminating a disability or making it less obvious to other people are usually more harmful than helpful to the child and family. In contrast, interventions that give disabled children resources and tools to thrive in the bodies and minds they have without fundamentally changing who they are can usually be positive for the child and family.

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