This entry is a response to this workshop prompt.
It took some time to get used to hearing other people’s hard stories; but in my MSW program, I learned to listen to them in such a way that I could be compassionate without falling apart myself. I had the opportunity to hold very difficult stories of domestic violence, of discrimination, of abandonment, of breaks with reality—and although I could empathize, I could also hold myself at a distance. But when a parent of a person with developmental disabilities shared her story with my Adolescent Mental Health class, I couldn’t keep the distance. At the end of the class, I looked around for the exit before bursting into tears.
A stranger could tell from ten yards that my older brother had disabilities. He didn’t use a wheel chair, but he had a funny gait; he always walked on tip-toes (a characteristic that I have since learned is sometimes called ‘equinus gait’ and can be a potential early sign of autism, though he was not formally diagnosed as such). As a child, I was fairly unfazed by his differences—he was just my brother, my first friend. It wasn’t until I was in school that I was aware he was different from me in any significant way, and it may be a coincidence of my constitution that my response to that new knowledge was to become a bulldog of a sister, ready to sink my teeth into anyone who crossed us.
In graduate school, I focused on severe mental illness, adolescents, school-based interventions, and family dynamics. I had no expectation of working in the developmental disability field, although I did present to a first-year class on ableism and my experience as a family member of a person with disabilities. And because MSW programs pretty universally require their students to do much personal reflection, I did do a fair amount of thinking on my own family’s story. The two years I spent becoming a social worker were immensely important to me: I learned a lot about us.
We were riding in the red station wagon, all of us, with my brother’s clothes packed in a suit case in the way back. I was eleven and furious because he wasn’t going to be living with us anymore; he was moving into a group home.
He could be a handful, for sure. Sometimes we all got frustrated. But I didn’t understand. In retrospect, I understand that his disabilities were one part of a much larger picture that included poverty, trauma, and a number of other stressors that impacted my parents’ wellbeing and ability to take care of us. A social worker had convinced them that this was in my brother’s best interest.
I sat in the middle seat between my brother and sister and could see my father’s face in the rear-view mirror. “Why are you sending him away?” I asked them. Beneath that question was, “Don’t you love him?” Years later, when I was twenty-two, I’d ask the question of my father in reverse: “Why are you taking him out of his safe and secure place?” with “Don’t you care about him?” undertones.
Every day, I talk to parents of people with developmental disabilities. They are, most often, totally exhausted and fearful about the fate of their child. They have spent decades being advocates, trying to figure out what the right questions are to ask, praying that their kid eventually makes it onto the Medicaid waiver so he’ll have the golden ticket that gets him the services that he needs, worrying about what will happen to their adult child when they die. My job is to maintain a list of applicants who are interested in residential options that my agency provides, to develop relationships with families, and in the best-case scenarios for those families, to match applicants with homes in which they will thrive. I really love the agency that I work for, and I love the work that I’m doing. But it is heartbreaking sometimes to hear all these stories and often hard to keep my distance from them.
When I was home from college once, I sat on the stoop of the house where I grew up, staring across at a yellow house I admired and imagining that one day I might buy that house and have a family. I considered my brother’s place in my life and realized that I would probably take care of him eventually, and I looked forward to him being an uncle to my children. I looked forward to loving him into adulthood with me, maybe making up for the hard years of my adolescence when sometimes I was too angry to love him properly.
Just a few years after that, his heart started to fail. We buried him in a cemetery where we rode bikes as children. I suppose that my life is simpler than it might have been, but I deeply miss the ways he would have complicated it. I still mourn the loss of a chance to love him better. That loss follows me around, haunts my work, brings me closer to the rawness of these other families’ experiences.