FS: What is your experience with people, now that you are not a child?
GR: As I mentioned, "Don't look, don't stare, don't ask questions – that would be rude" is taught with the best of intentions. With someone like me with a visible difference, even as an adult, it makes me feel invisible.
An example, is the story of a boy in a clothing store, who popped out from behind a clothing rack and saw my hand. I remember him going to his mommy "Mommy she has a funny hand." Mom said
"That is not nice" and walked away, not even acknowledging me. Like many people with disabilities, when you don't interact, don't engage or acknowledge them… it is like we are invisible. So, I was invisible and he didn't get his questions answered. He probably had no idea what this was all about (Gianna pointed to her hand).
If I had had the opportunity with him, had his mother looked up and acknowledged me, I would have said, “He hasn’t met my little buddy.” I would say to the little boy, while showing my hand, “This is my buddy. Doesn’t a buddy help you do everything? Well, he helps me get dressed. He helps me tie my shoes. He’s real soft like a pillow. When I watch TV, sometimes I’ll lay on him. His name is Charlie, but he’s afraid you won’t like him. He’s really shy.” I would cover my hand and tell him to say, “Come out, Charlie.” I would have him say it a few times, until I could see he was comfortable. Then I would say, “Oh, there he is.” I made it a he because I’m a she, and they are not afraid of me. They can be afraid of Charlie. That’s fine. But that separates me from what they are afraid of – my hand. It doesn’t define me. So, they’re not afraid to come near me. They just don’t understand.
I find the opportunity to engage, to start the conversation. Because, and I’ve been telling this to my own people that all have disabilities, it’s our job to break the ice now. And it’s okay to break the ice now. If it is an adult that I notice staring or uncomfortable, I might say “I see you are curious. Would you like me to tell you about it?” So, I have engaged. I’ve started the conversation. If I start the conversation, it opens up the discussion, and helps those wondering, “What do I do? Should I ask? Should I not ask”? People don’t know how to talk to you. They don’t know what you’re thinking. They don’t know what to do. They haven’t experienced it. It doesn’t even have to be spoken, they are just uncomfortable and they don’t know how to deal with something different. “What do I call you? Do I call you disabled? Are you going to get offended?” Labels are a big barrier. That’s why I like the Exceptional Parent title, it struck me. I think exceptional is a good word when it’s used in the right context. Disabled is the right word
when it's used in the right context. I love differently-abled because it's just different. I'm going to do it differently. Every person, even if they have a disability, has some ability. It took me a whole lifetime to be able to say this.
I believe that the next generation, hopefully, is going to be even better than the last generation about accepting people with differences, because of all that we're doing, the exposure, the talking about it, making it okay.
FS: Do you find that most people with challenges want people to ask what happened?
GR: It depends on where they are in their journey. If early on, if it is an illness or an injury, they often do not want to go back and relive the trauma.
FS: How do you advise people whether to ask or not?
GR: Take a step back and use your better judgement. Don't do it in a way that is offensive or degrading. Each situation is different. Remember they are people and talk to them like any other person. You can leave it up to the person to share. If you are not going to connect with the person, do not just stare. Staring is rude. Either connect or move on, we do not want gawking. If you cannot just say hello like you would to someone without a disability, then just move on. There is no one right or wrong way. Everyone is different in their journeys. I would like society to know it is okay to politely sat "I noticed you only have one leg. Do you mind if I ask what happened?"
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FS: How do you feel about people asking to help you, when they notice your hand?
GR: There’s a raw nerve that has been poked my whole life. So, when something like that does happen, sometimes it’s a little bit of a trigger. It’s not a negative, I have to remind myself sometimes. People generally are compassionate and empathetic. We’re taught that we should help when we can. But the misconception, and where sometimes people like myself may take it even more negatively than intended, is because we in our minds automatically think, “You think I can’t do it? You want to take it away from me while I’m doing it and do it for me because you think I can’t do it?” Then you’re not giving me the opportunity. However, it is ok when somebody comes up and says, “Hey, can I give you a hand with that?” But I usually prefer to do it myself, because I have my own system. For me, it may be a little different than for others who became disabled, because I was born with it. It feels natural to do things myself. I don’t know any different way. I have to remind myself that people want to help and it is a gift to them to let them help me. However, my husband will stand back and watch, because he knows, I don’t need any help, nor want it. If I need it, I’ll ask for it.