I pondered for a few days about what to write for Blogging Against Disablism Day. As a nurse, I've taken care of many people with disabilites, from children with chromosome abnormalities to elders who've had strokes. I couldn't think of anything. So I asked Love Monkey. No help there. Finally, Dear Kid said, "What about Auntie?" How dense could I be? I'd forgotten my own family member and her struggles being differently-abled, which only shows how marginalized people like her are.
I was probably 7 or 8 when I realized Auntie was "different". I might have noticed a little earlier, but she didn't live close by, and really you could know her for a while and not realize it or just think she was a little "off". Finally, one day I asked my older sister, "What's the matter with Auntie?" "She's retarded!" Just the way my sister replied made me feel like it was shameful to even ask.
Those who qualify such things say she is "high functioning." I know that she writes her letters neatly in the blanks of the crossword but they don't spell anything. She looks through the paper but doesn't read it. When my grandfather drives, she tells him what street to turn down and she remembers everyone's name-even people she hasn't seen in a long time. She was born in the early 1940's, the only one of her siblings born in a hospital. Something happened during birth and she was deprived of oxygen and had brain damage. So she doesn't "look retarded." If she was born today, she'd probably be in special education classes and maybe mainstreamed. She might even hold a job and live independantly or semi-independantly. But she was the product of another time and a dysfunctional family. She was advanced through Catholic school for several years and then just stayed home. Nobody talked about it.
I probably wouldn't even think about it much except that Auntie came to live with us when I was 19. At the time I was horrified. Something in those two words my sister said years before shattered my child's love and made me ashamed of her. My teenaged selfishness thought it was a terrible imposition, even though it really didn't change my life at all. I left home that year and again, it wasn't something that really registered on my radar except for visits home. Then, all I could think about was how she bugged me. Like the weird way she had of moving her mouth when she listened to you and how she was always twitching and moving. Nobody then realized she had Tourette's Syndrome. Then I would leave and not really think of her again until the next visit. My parent's were having difficulty adjusting to Auntie in their home, but that was their problem, not mine.
Somewhere in my 20's I started to change. Somewhere between having a child, becoming a nurse and going through several difficult years as a single parent I started to have more compassion in general and more feeling for Auntie's situation. Maybe it was when Dear Kid asked me the same question I had asked my sister years before, "What's wrong with Auntie?" Being less blunt I explained a little bit about how and why she was the way she was. Dear Kid loved her. One of my favorite pictures is of Dear Kid and Auntie walking away from the camera down a path framed with Autumn trees turning gold. DK never felt shame about her Auntie and I learned that if you teach a child with truth and compassion they respond with nonchalance. Auntie was different from DK in the same way that some people have different skin or hair color. Interesting, but it didn't change their love for each other.
By now, the stress of taking care of Auntie was taking a toll on my parents. My mother in particular would snap at her for little or no reason. Auntie was like having a perpetual 9 year old on your hands. You always needed to remind her to wash or brush her teeth or put on clean undies. Mom either couldn't or wouldn't remember that or maybe she was just mad that she had raised us all and now was raising one who would never grow up and leave home. Fortunately, they were put in touch with someone from Social Services and found out about a day program. Auntie, after some initial fear, really seemed to like it. They also had overnight programs, where they went to the movies and stayed in a hotel and went swimming and such. My parents are also entititled to three weeks a year of caregiver respite. Sometimes these go fine, but one time Auntie came home crying. They had roomed her with someone who wasn't "high functioning," someone, in fact, who needed help with feeding and their diapers changed. It really scared her, I think because she knew this could have been her. For the first time I really, truly understood that Auntie was a person, not just my "different" aunt. Not just a brain damaged, Tourette's twitching diagnosis but a person. Not the shameful, family secret but a person and my aunt.
She is responsible for my seeing patients in a different way. For not having conversations about who's sleeping with who over the confused patient during the bedbath. For not talking loudly to the blind person or condescendingly to the old. For not assuming anything about the differently-abled. I started having conversations with Auntie, asking her about things. I'm embarrassed even to tell you that it took me this long. She's never asked for anything. She's spent her life dependant on others to look after her. If she outlives my parents, my sister and I will be her guardians. She loves babies and chocolates. Despite her small stature, she gives bone-crushing hugs. She still bings around from place to place with her crazy, frantic energy. And there's nothing wrong with her.