This is something I struggle with constantly: what’s the right thing to do when “speaking on behalf of my brother?”
My brother David and I have a unique sibling relationship. Though there are many siblings in our family, I am David’s primary advocate. I am often in the position to put David’s needs and desires forward in some formal matter, for example, getting them into his annual supports plan. In these cases I think of myself as his advocate and representative.
David can express himself and he does communicate what he wants. But he has a unique language and for some things you have to be around David a long time to understand what he is saying. You have to be patient in the moment. And, of course, you have to be listening. In an east-coast, sound-byte society, David’s voice gets lost. And as his voice gets lost, little by little David erodes away. Drifting out of lives of family members and friends. Losing old relationships. Isolated. Eventually succombing to a routine established by the provider program. David needs support so that his “voice” can be heard.
Over these many 15/16 years I have really struggled with figuring out how to represent David while not diminishing him. There are two extremes on the spectrum. At one far end, self-advocates call it “speaking for ourselves” and while I am a fan of that particular thought, I just don’t know how to employ it with my brother. At the other end of the spectrum, I’ve heard parents say “I am my child’s voice” and “I speak for my child.” I struggle with this position as well. Both are extreme points of view.
I’ve tried to find the middle ground between the two. My personal key is to enter those settings extremely conscious and intentional about communications. Whenever I am in a setting where I am advocating for David before I speak, I break my thoughts down like this:
Who are you really representing at this particular minute?
- Is this something in which our family has a strong belief? If so, then I see these as moments in which to share our belief system and to ask people to adhere to our beliefs. For example, we believe in community inclusion and therefore we fundamentally that David should be a valued member of society and our desire in planning is to help him achieve that goal. This is the basis from which I entered all early annual Individual supports meetings. I was set on upholding what my parents wanted.
- Is this something David has expressed an opinion about? If so, I see these as teaching moments where I can put forth David’s opinion and help people see that David has expressed that opinion. For example, I have seen how David reacts adversely to being in large crowds of people pressing forward. He has a whole series of behaviors, vocal and non-vocal that make his irritation, discomfort, and even ire clear. Therefore, I can say “David doesn’t like this and this is how he shows it. Therefore, let’s not do that.” On the other hand, David loves going to the Diner. We know because when he goes there he is relaxed, happy, smiling, laughing etc. Therefore, let’s schedule the corner Diner on a weekly basis. The more time I spend with David and talk to his staff then the more I learn and the better I can represent his own opinions.
- Is this something in which I have a personal opinion and desire and I think my idea is good for David? Ah, this is the most tricky one. I got David a membership at the Art Museum. Does he really like going to the Art Museum? I do not know. I do try to be clear in my own head that this is my idea and not David’s idea. Why? I have a bias that people are not stagnant. They grow and to grow you have to take risks. The latter is an important key. With my ideas, I try to find opportunities to expose David to new things and then to watch him, listen to him, and learn about him. After which I feel that we can then see what else he likes, wants, needs etc. and pump that back into bullet 2.
I don’t know about you, but balancing me/he/we is a real tough thing. I don’t always get it right. But I never stop trying to get it right. Oh, and I never stop asking “Who am I representing? Who is this for?”
Yours in community