I am a direct support worker, although there are many words for what I do. To people not involved in Disability World, I often describe my job by saying, "I take care of someone who is disabled." I don't really like to say this, but not everyone is coming from the same place and understands the same language.
My job title is Personal Assistant, which I like. I think direct support work should be viewed as assisting a person who is your boss, not taking care of someone passive.
It's important to keep in mind that there isn't one way to be a support worker. At one point, I was steeped in a certain view of support which was that it was totally inappropriate for support workers and their bosses to be close friends. A worker should just be like a robot that brushes your teeth, puts your shoes on, and transfers you from stair lift to wheelchair. This concept not only was alienating to me, but it just didn't fit with how my jobs were. Sometimes a client obviously saw me as a friend and I felt the same, and it would be weird to insist otherwise. People have different preferences about how professional a relationship they want to have with their staff; and for some people, it just makes sense that if you spend so much time with someone, you will be genuine friends. Other people don't want that. Either way, it should be based on the preferences of the client and the worker, not an abstract idea of what their relationship should be.
My boss is a twentysomething severely disabled girl who I consider my best friend and sister. We have spent most of our time together for more than four years, and to me it just seems appropriate to use these words. Several years ago I would have thought this was politically incorrect, but oh well—here we are!
However, despite feeling like Anna is my sister, I still see her as my boss first when I am on the clock. A friend or family relationship with a boss should never supersede the fact that they are your boss. Here are what I see as some common pitfalls of support work, where workers don't view the relationship appropriately:
1. Acting like a friend/family member when the client doesn't see you that way. You are an assistant, unless the client shows or tells you that they want a more personal relationship.
2. Acting like a friend/family member when you don't see yourself that way. Once when I was talking about this on Facebook, someone described how people they knew had staff who presented as friends and who the client saw as friends, and how hurtful it was for the client when the "friends" would suddenly disappear from their life. (I don't remember who said this but if you did, stand up and be credited!)
A friend comes to your birthday party even if they are not scheduled to work for you. A friend doesn't abruptly disappear if they leave their job—they tell you they're leaving and still make time to see you! Staff I know who are actually friends with their client still visit and meet up with them if they leave their job, because they enjoy their company. It's fine not to want an extra-work relationship, but you are not friends if you don't treat your client like you treat your other friends.
3. Using the word 'friend' as a euphemism. "I'm Andre's new friend! We hang out from 8 am to 8 pm on Mondays, Tuesdays, and Wednesdays!" Well, that's a pretty strict schedule for two friends to "hang out," especially if they just met each other. Would the world implode if you said, "I'm Andre's new aide and these are the times I work for him?" It's not shameful that Andre has a support worker and besides, it's obvious you work for him, so why not just say it instead of talking around it?
This also leads to some truly ridiculous sentences. I once heard a new staff say to her client, "Do you need help in the bathroom? I wouldn't be a very nice friend if I forgot to ask that!" It would be a totally normal question if she said "good staff person" instead of "nice friend" but as it is—well, that's a very weird definition of friendship!
4. Telling your boss how to live their life. If I never hear another 30-year-old staff telling their 60-year-old client what they should be talking about, doing, buying, or eating, it will be too soon. It's particularly striking with the age discrepancy, but it's never appropriate. Being a direct support worker is a position of service, not authority. If you were a personal assistant to a businessman, a politician, or a Lady Who Lunches, you'd help them do what they wanted to do. Being a PA to a disabled person is no different.
I'll confess, in my job I sometimes break this rule. My boss Anna loves to play with leaves, so she rips them off plants; and she also will knock over any glasses or cups that are near her (I don't know why). I stop her from doing these things even though it may not be in compliance with my idea of how a PA should act. I may not be able to make an argument for this exception, but it's just common sense. People have a right not to get their potted plants yanked over or their glasses broken, and Anna can go more places if she doesn't do these things.
5. Just doing whatever you feel like. Some PAs really don't get that even if someone is developmentally disabled, or especially if they're nonverbal, they're still your boss. Just because they can't say "I want to go to a movie" doesn't mean it's okay to take them with you when you go to IKEA and make them sit around while you pick out furniture for yourself. It might be okay to meet up with a friend of yours if you actually think your boss would like them and you're including them in the conversation, but it sucks to just haul your boss around like they are your extra purse while you hang out with other people and ignore them. It's nonsense. This is the ice cream of jobs, if you get along with your boss—all you have to do is spend time with someone cool, and help them with things. This is a job? Doing it properly is the easiest thing ever so I don't understand why someone would be like, "Wait, this job is still too much like a job, I'm going to do my grocery shopping instead of working."
I mean, aside from how stupid this is, it's pretty evil. How would you feel if you spent your days being treated like an object who is ignored and whose preferences and opinions don't matter? If your boss doesn't seem to mind, this is probably a sign of how fucked up their life has been so far—a pattern you are continuing.
Obviously if you work for someone like my boss who doesn't really have a reliable communication system, the person can't just say what they want to do. So in focusing on their wishes, you have to rely on activities you know they like; talk to them about activities and see if they look happy and interested; and try introducing them to new activities to see if they like it.
I used to have to struggle to get my boss out of bed to do things. For whatever reason, this doesn't really happen anymore. I don't know exactly why—because we know each other better now? Because we are older? Because she was just out of school and getting used to a more unstructured adult life? Even though I knew she would be happier if she went out and had adventures, I had mixed feelings about pushing her to get up when she didn't seem to want to. But now, if she's not sick, she seems ready to get up and go somewhere.
7. Not respecting your boss's privacy. If you don't understand why you shouldn't tell your boss's friends and acquaintances about bathroom things, then I don't know what to tell you. Would you like it if you used a catheter and someone told everyone about it while you were sitting there unable to stop them? Somehow, some people get the impression that disabled people's private business doesn't belong to them, it belongs to the person who helps them with it. It doesn't. Even if you literally have to take them to change their catheter bag right now, present company doesn't need you to describe exactly why you are leaving. It's rude.
Privacy applies to all subjects of course. One time, thinking it was funny, a staff told me her client had a crush on me. The client was someone I saw regularly and was friendly with. Come on—would you ever want someone to tell a friendly acquaintance that you had a crush on them, potentially making your interactions really awkward? Of course not. We all might have to contend with this from bullies and embarrassing family members, but if it's your job to support someone in the community, then you shouldn't actively cause problems in their social life.
8. Hogging your boss. This is a self-directed complaint. I am always hovering around Anna because a) she's my favorite, and b) I want to be around if she needs help. In groups, I'm trying to learn to sit apart from her and give her time to be alone or relate with other people, while still being aware of things she might need.
End of list.
I also have to register that unlike many other bosses, the person I'm calling your boss may not be able to fire you. They should be able to, but if they aren't making the direct choice, the family member, agency, or program that is employing you may not care about their opinion. This unjust circumstance doesn't mean that you shouldn't treat your client as your boss as much as possible. Neither does the fact that they may not be able to express their opinion, either because of their disability or because you're the best of a bad bunch and they don't want to end up with someone worse.
I feel like most of my opinions come from two principles: 1) treat your boss like any other boss; 2) treat your boss as you would want to be treated. I kept finding myself writing, "How would you feel if...?" Many times, support workers do not put themselves in their boss's shoes.
Anyway, like I said this is the ice cream of jobs, so just have fun, pay attention, and be considerate. I feel lucky that instead of sitting at a desk, I get to explore life at the right hand—or rather the left hand—of the coolest person I know.
|[Image is a photo of Anna walking along a boardwalk and |
Amanda walking behind her,
holding her left hand to stabilize her.]