Saturday, April 29, 2006

What's wrong with Auntie?

Blogging Against Disablism Day

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.


Bob said...

"I'm embarrassed even to tell you that it took me this long." Some people never do acknowledge the "different" ones, even in their own families. With that perspective, there's absolutely no reason to be embarassed.

Attila The Mom said...

What a beautiful post. Thanks so much for writing it.

Kim said...

Great post (and an interesting look at generational changes in perception)

And your Auntie sounds wonderful...

Keith, RN said...

Lovely and thoughtful post, and also very honest. I had two grandmothers who both were described by family as "simple", and now I wonder if they were, in fact, both somewhat retarded.

I love working with people with developmental disablities, and while I have not done so since becoming a nurse, there is a soft spot in my heart whenever I have a chance to interact with that loveable and often heart-centered population.

Sally's Life said...

We all hope to be cared for, nursed, or related to someone like you. I know someone with mild Tourettes, she is an excellent foster mum!

Leah said...

My parents adopted 4 (fetal alcohol/drug affected) girls after my brother and I were grown and gone. My own 14 yo is older than her aunties. While all of these girls are well-functioning, the 3rd has autism (or PDD or something) and requires special services. So my kids have a special Auntie too. I'm so proud of my daughter and my sisters - as a teenager I would have been mortified to be seen in the grocery store with a little girl still wearing PJs, wearing a slip on her head like a nun's habit waving a roll of aluminum foil as a saber and shouting "Let's buy cookies! I need cookies!" My daughter and sisters take it in stride and gamely coax her out from under someone else's cart when she hops in.

This one child, so much more affected than the others has been the most gratifying as every achievement is momentous. Being with her has really made me rethink everything I ever knew - and to lighten up with the kids in general. Yes! Let's buy cookies!