Sometimes it's hard to have a disabled sister. You deal with sarcasm, strange questions from some people, and the startled—even frightened—looks from others. With still others, I sense I know why they stay silent: they're afraid of saying the wrong thing. So the question becomes: should you talk to me about my sister or not? I know I myself avoid the subject, even though I realize I should speak about Clara and her struggles openly, if only to ease their fears.
Little by little, she has changed the way I see disability and opened my heart to it. Now my job is to be a bridge between her and all of you.
Here's what would help me most, coming from friends:
- Don't hesitate to say her name or ask me how she's doing. Not out of pity or obligation, but simply because she's my sister and it's natural to ask about the people close to us. Clara belongs fully in my family. I play with her often, and we share moments of real joy together. It means a lot to me to be able to talk about her.
- When you visit my home, speak to her as you would to anyone else. Spend a little time with her, even if it's brief.
- I'm full of contradictions. If you notice I'm reluctant to talk about Clara, don't push. Sometimes I struggle to accept what I'm living through, and I need you to focus on me alone, to give me my space.
- Often when I go out to have fun, I feel guilty because I know my sister wants to have friends too. Every now and then, ask if she can come along for a walk or a movie. It's a way to learn to love her, to lift her spirits, and to show me your real friendship.
Tell me when you notice I've crossed a line—when I've stopped being her sister and started acting like an overprotective mother. Help me find the right balance.
From the outside, your eyes can be clearer and more objective about some things.
Finally, I want you to know I understand your difficulty. I had the same reactions you do—before Clara came. She's the one who, little by little, changed the way I see disability and opened my heart to it. Now my job is to be a bridge between her and all of you.
— Axelle Menu, 1996
(O. et L n. 108)