I have been revisiting a painful reality in my life: When I try to participate in most groups, I am excluded. This is not rejection: People aren’t actively telling me to go away or refusing to speak to me…most of the time. It’s more that they don’t include me.
Let me give you some examples:
*A friend of mine recently commented that there are people who silently walk away when I come their direction.
*I often locate people by their voices, which means that they are in conversations. I walk to the edge of the group and wait to be invited in. Most of the time, they finish visiting and walk away without acknowledging me.
*More than one person in my life will greet me with something like, “Hi, Sweetheart,” then have nothing more to say. They don’t respond if I try to start a conversation; they don’t think of me when there are things I could do.
*It is not at all uncommon for people to talk about me while I am present, as though I can’t hear or understand.
*Sometimes, I can’t join in, simply because an activity is not accessible – the words to music are projected on a screen; people are using gestures, along with words like, “This, that, it, here and there.”
And so go the examples.
Why is this important? I am in no way alone. Anybody who has an observable disability faces this sort of challenge. I can’t say that I have the key to this phenomenon. Perhaps people feel uncomfortable because they don’t know what to say or do; maybe they assume things about the person. They might fear the possibility that they themselves will be numbered among disabled people someday.
What I have learned is that I am responsible for myself; not those who are acting in such a poor manner. It is not my job to fix, educate or accomodate the public. I will try to direct and inform, simply because I stand to gain a friend when someone does catch on.
If you are facing this same challenge, take good care of yourself: Stay close to people who understand. Arrange time out to regroup and “lick your wounds.” Make a daily practice of doing things that remind you how whole and precious you truly are.
How can you help? Be the one who learns. Start by remembering that someone who can’t see, walk, hear, process information or speak is first and foremost, a real human being with all sorts of faculties, feelings and gifts. Ask. Take direction from that person. Be okay with not knowing. Honor, respect and courtesy go a long way with anybody. When you are with someone who tends to be at the receiving end of all of this, refrain from speaking for him/her. Don’t try to rescue; yet don’t join in. I often tell people just to look at me when someone asks about me in my presence: I’ll take care of it.
Lay down the notion of “normal.” It is a myth in the first place. it is only good as a research tool; it doesn’t fit anyone all that well: Each of us is unique. To quote a song by Seth Guires, “I’m just like everyone; I’m not like anyone.”