I call it a haunting because the day reminds me of profound loss and of traumatic, untimely, unexpected, and bloody death. Unlike the other 364 days of the year, when my life flows on with a constant knowing that she is gone, this day pulls together painful memories of her death and jumbles them all together with a sense of celebration and overwhelming gratitude for her life, with moments and stories, with the sounds of her laugh, her voice, with the sight of her smile, her orneriness . . . with her Debbie-ness.
As I told some friends, somewhere in my need to linger with the memory of her I discovered that I am weary of the word disability. Although having Down Syndrome was interwoven with the core of Debbie’s very identity, creating disabling realities that produced suffering, pain, and challenge on a daily basis in her life, I am finding the word disability wearisome. The word, in how I think of it now, does not fit Debbie, because ordinary life with Debbie meant doing both the things that she could do and the things that we could share together. Weariness of the word might be, then, the very limits it implies.
For some, this idea may seem absolutely absurd. Of course disability ”fits” Debbie; it would not be right to imagine Debbie without Down Syndrome. In fact, her genetic make-up that produced differences and a concrete medical diagnosis cannot be separated from who Debbie was, nor should it.
But when I say I am weary of the word disability, I am weary of centuries of oppression that the word itself implies. I am weary of the attitudes it often produces in the minds of those to whom it does not so boldly or clearly apply: attitudes of absolute disregard, dehumanization. I am weary of all of the questions wrapped up in an understanding of “meaningful life” based solely on capacity and agency for all sorts of “typical,” “regular,” or “normative” things.
When I honor, celebrate, and remember Debbie, I call to mind a person, a face, and a hundred images and stories of moments spent in relationship. And when I think of Debbie, I am overwhelmed by how she accepted, included, and loved me, just as I am. There is nothing disabling in that. Through her love, I grew. I was able to serve a volleyball confidently with her all-believing shouts of “GO KATBABY. YOU CAN DO IT BABY!” over the noise of a tension-filled, crowded gym. I was able to take a break from studying because she had hidden my books in the laundry basket, and focus instead on a few hours of play and release.
Her love steadied me, centered me, and allowed me to be me. And I can only hope that she experienced my love, and the love of our family and friends, in a way that steadied, centered, and allowed her to be herself, just as she was: Debbie.
On this day, the anniversary of Debbie’s passing from life as we know it, I celebrate the gift of Debbie’s ordinary and beautiful life. On just this one day, I think, it’s ok to give thinking about disability a rest.
Tomorrow, though, I’ll plow forward, because this word disability is haunting, too. It will continue to haunt, as long as any one person living with a disability is denied status as a whole human being, named, called, and loved by God.
Kathy Dickson has been a Field Associate for Anabaptist Disabilities Network since 2010.
