What It Means to Grieve and Dream

And Other Thoughts from a Working Woman in a Wheelchair

by Claire Bergstresser

While navigating the world of online dating during my early 20s, one of the best pieces of advice I received was to manage the expectations of both your partner as well as yourself as early as possible. Let the other person know early on if you are looking for a soul-mate, a “let’s see what happens” connection, or a one-night stand. There are potentially disastrous morning-after conversations for those who do not heed.


Managing expectations is critical. But what happens when expectations that are foundational to our identity, family, future, sense of self, safety, or health are shaken to the core? With parents, for example, learning they will have a child with a disability for the first time can make hopeful expectations of the future feel torn away. Shattered expectations, especially when abruptly realized, can leave us grieving in complex ways.


Even as a seasoned expectation manager, I continue to experience grief and frustration of challenged expectations. While disability is one of the best things that has ever happened to me and encompasses a fundamental piece of my identity, all it can take is one really bad day of inaccessible streets, loss of physical strength, or ignorance-filled words to leave me crying into delivery pork dumplings at the kitchen table once again. Even with my gratitude and acceptance of a disability I have had my entire life, my grief is not static.


But disability is hard and it is challenging to find spaces to talk through the experience in confidence. Even once these spaces are discovered, it is challenging to open up about these moments of grief. In a world that expects us to face these challenges with stoicism and acceptance, putting on a brave face can feel inescapable. Every day we work so hard to mold our surroundings to be accessible for our bodies and our minds, all the while advocating for our existence in society to be normalized. Revealing our grief can feel vulnerable; what will people think about disability to see us grieve from it?


Despite this, we do no favors to ourselves by pushing these emotions of grief aside, even if we may feel tempted when logistics constantly demand our attention. It is the acknowledgement of grief and the formation of new or rekindled aspirations that keep us getting up again. As heavy as these emotions may get, once we have eaten the pint of ice cream or finished the bottle of Pinot Noir, it’s time to rethink our expectations and set some goals. We must not forget to reset and use what we know to point towards the future we want.


Grieving does not mean we have given up. It does not mean there is no hope or vision of the future within us. Allowing ourselves to grieve honors our past, present, and future. We can’t forget the hope and dreams we had before the grief. It will be waiting for us when the time comes again.

28 September 2020