by Laura Hershey
Having attendants come in every day to help me with personal care, health support, and household duties isn't always easy. We have to adapt to each other's personalities, communication styles, habits. I have to work around their work schedules, and even though I set those schedules with them, it means that I can't always be spontaneous. Their presence compromises my privacy, though if they are respectful and careful, they don't invade it.
One of the issues I deal with is the presence of my attendants at work meetings and social gatherings. Often I need them to accompany me in order to assist with eating, drinking, and positioning. They are there, but their role is obviously different from my role there, and usually from everyone else's. Because they're there for me, I feel a double responsibility: to make them comfortable, and to make clear how I want them to interact in that situation. I sometimes struggle with both.
Work and social situations are different. Professional meetings tend to be more formal, and focused on a particular specialized topic. In such settings, I usually don't expect my attendants to participate at all. I often encourage them to bring a book to read while I'm busy. If I don't need them right next to me, I might suggest they sit in a separate waiting area, where they can read, text or talk on their phone.
For any significantly disabled person in the work world, managing the presence of an attendant becomes important. You need to present yourself as a competent, confident participant with a lot to contribute to the discussion. Even if you're not the facilitator or a main player, you want everyone to understand that you are the one involved in the project, and that your attendant is there to meet your support needs. While you do need someone around to help you with physical or sensory stuff, intellectually you're operating under your own steam. Unfortunately due to stereotypes of people with disabilities, some colleagues may incorrectly assume that this person who's with you understands what's going on better than you do. Or, without thinking it through that far, they may just feel more comfortable interacting with someone who is more like them, that is, not visibly disabled.
When this has happened to me, I have learned to intervene rather assertively. If a colleague asks my attendant a work-related question, I move forward and answer it. By now, all of my attendants know to deflect such interactions back to me. (In fact, they are often almost as annoyed by it as I am.)
On the other hand, I don't want them to feel as if I'm trying to make them invisible. When we arrive at a meeting, if I find myself chatting with a coworker for more than a minute or two, I introduce them to my attendant. If my attendant is going to play any role in the meeting, such as taking notes or turning pages for me, I introduce her to everyone, and explain what she'll be doing.
At social gatherings – parties, dinners with friends, and dates – the rules are a little looser, and more complicated. Again, my attendant's primary role is to assist me with whatever I might need, from giving me drinks of beer, to adjusting my ventilator settings, to driving me home. Unlike work meetings, there's no set agenda, no special expertise required. But the stakes can still be high. If these are new or potential friends, you want them to get to know you, not to focus on your assistant. On the other hand, people are people; mix them together and you never know who will connect and how. At parties and other convivial events, trying to micromanage or intervene in personal interactions is fairly futile and, worse, it's rude.
You can still have clear rules and expectations for your attendants at parties. It's perfectly reasonable to require that they be attentive and available to assist you when needed, that they stay sober, that they respect your confidentiality, and so on. Keeping them from talking to people, though, is more trouble than it's worth. And it may demonstrate an undeserved lack of respect.
When I was much younger, I would sometimes get jealous of my attendants who, back then, were more likely to be my age peers. (It's much different now; some of my attendants are literally young enough to be my daughters!) At college parties, my attendants would seem to talk so easily to my classmates, whereas I was shyer and more insecure. Once or twice I got angry at them, feeling as though they were butting into my social life. Of course they weren't really trying to do that. They were just doing what came naturally, chatting with people in a casual atmosphere while they worked.
As I've matured, I've learned that the best approach to social situations is to relax, to be myself and to let my attendants be themselves. In business situations, we both have to behave somewhat differently. I've learned to guide and then to trust my attendants, to make my expectations clear. In both situations, I recognize that I have to rely on myself to make the kind of impression I want to make.
I'm always interested in knowing how other people handle these situations. What's your approach?
Copyright 2010 by Laura Hershey