Editor’s Note: Moving Beyond Ablesism is a quarterly column featuring the work of the Anabaptist Disabilities Network (ADNet) www.adnetonline.org and offers reflections from different authors on the various issues facing persons with disabilities.
By Sue Cassel
Perhaps you have heard the story of the desperate mother of an autistic teen in a Chicago suburb who, along with a caregiver, killed the teen and attempted to take their own lives in June of 2013. Tragic and extreme, this situation draws attention to important issues that many of us face as parents of children with disabilities.
First of all, the affirmation of life—all life—is worth a significant focus. As a Christian, I share the belief that God creates life, loves each individual, and provides hope during our times of great challenge. As a parent of an autistic child who has an accompanying mental illness, my heart grieves for the child in the news story who didn’t receive adequate treatment and for the mother who felt so exhausted, alone, and desperate that she decided that she, her son, and a caregiver were all better off dead than dealing with life as it was.
So I ask myself, what separates me, and others who have children with complex special needs, from the mother who took the life of her son? Is it resources? Support system? Our choice of physicians? Am I in some way “better” than the mother who made this choice?
I know that I have made my own share of mistakes as a parent, and am not better than any other parent. While not driven to the point of absolute desperation, I have done things I never thought I would do. I have been the parent calling 911 because I was unable to handle my child’s aggressive outbursts on my own. I slumped in the darkness of my living room when, time after time, she was hospitalized while the doctors tried to find medical answers for her extreme aggression. I stood in my kitchen and wept with my husband after she was finally arrested for battery, having caused increased injury to others with each outburst.
While I am no stranger to lengthy battles with extreme behaviors, somehow, in the midst of life’s greatest challenges, hope survived. When we didn’t know where to turn and doors repeatedly slammed shut, when darkness seemed to engulf us, hope remained—perhaps just a glimmer, but that was what we needed to get through the exhaustion, aloneness, and desperation. I still think back on the gut-wrenching difficulty of those days with a grateful heart that God kept that glimmer of hope alive when we needed it so.
But what is hope? Sometimes it is the belief that things may somehow get better. At other times, it is having just enough energy to get through another day. A lifestyle of faith, along with a willingness to actively seek out available resources and support, helps to keep a flicker of hope alive in our most difficult situations. Congregational support and encouragement create an environment where hope can flourish. I invite you to pray for opportunities to fan the flame of hope for those living with disabilities and mental illness, and their families.
Sue Cassel is a Field Associate and board member for Anabaptist Disabilities Network.