35 Years at the Front Line: What I Wish Every Support Worker Knew
As somebody who has a physical disability and has high care needs, I have required support for basic activities of daily living for every single day of my life. Since starting school, I have had to use a support worker almost daily. When dealing professionally or personally with support agencies, the number one question I get asked is: What's the most important thing you look for in a support worker?
To me, that answer is easy. A great support worker must be an excellent communicator.
By communication, I don't necessarily mean asking questions in the traditional verbal way. Communication is a two-way process, which can come in many different forms. The support worker must quickly understand how to communicate in the way that best suits the needs of the individual.
The Power Dynamics
What some people fail to understand about the relationship between a person with a disability, and their support worker is the inherent power dynamics. I, as a person with a disability, have the power to determine what a support worker does for me. As an employer, I can also choose the hours my support staff work, and recommend them to friends and colleagues to provide them with more opportunities. Similarly, the support worker can decide if they wish to perform that task, impacting the other person's ability to interact in their immediate environment. The stakes on both sides are very high. That can make the relationship very complicated.
To facilitate productive communication, I recommend having flexible boundaries that can be adjusted within strict parameters. For example, here are two elements that I talk through with any new support worker.
I don't have a lot of street smarts. Hence, you need to tell me when I need essential household items like laundry detergent or disinfectant, because I have never been able to reach my washing machine before, so I don't know how much powder to put in the machine. So you must also write it on the fridge whiteboard if I need to buy more.
I make it very clear that I am not a morning person. I need quiet time in the shower before I can have a decent conversation.
Personal Space and Privacy
Constantly having a support worker in your living environment means that a person with a disability rarely has any privacy, and does not have the power to change that. Personally, privacy is the thing I crave most in my life because I hardly ever get time to myself to relax. A support worker operates where people with disabilities are supposed to feel safe, and are at their most vulnerable. That is a privilege that I grant my workers. It is not often recognised as a privilege; instead, it's assumed because if I don't grant that privilege, I am trapped in bed all day. I give my workers this form of communication, even though I may not always grant it happily.
Just because support workers are essential for my life, I don't just invite anyone into my home. Giving a worker permission to enter makes me sacrifice a part of myself. I am naked in all senses of the word. The worker is here because I struggle with these parts of my life. I don't have the opportunity to struggle in silence. They have to see and witness the parts of me that I don't even want them to know. By entering my private spaces, I am saying that I trust them with the parts of me that even people I love never get to see. I never grant that trust lightly, and I make that clear with everyone I work with. Disregarding that trust or taking it for granted demonstrates that they do not understand its power.
So, how should a support worker communicate effectively?
Acknowledge how the power between the support worker and the person supported shifts in different circumstances.
Respect privacy. Don't run to your supervisor or boss to tell them unnecessary personal things. Unless it violates your organisation's policy or you are legally required to do so, personal information and discretion should be your priority. Even if the person you're working with is not their decision maker, their privacy is paramount.
If you are unsure of anything, never be afraid to ask questions. The assumption of some support workers is they think working with me is 'easy'. This is a more common problem with experienced support workers. They will say, "I've done the job this way with the previous person, so I don't need to ask you about that". Never assume what a person wants or needs based on another person's experience. Different people need and want different things. It may sound simple, but it is a skill that support workers sometimes forget.
Don't expect a smile on a person's face whenever you enter their private space. While everybody must practice respect and kindness, understand that dealing with support workers regularly can be tiring, and occasionally overwhelming, particularly when someone with a disability is experiencing high stress. If you are unsure whether this is occurring, just ask or give the person the opportunity to tell you what they need. Don't ask for further explanation about their feelings. If they want to share why, they will let you know.
If you have been working with someone for several years, communicating with them is still essential, and encourage this at every opportunity. Just because the routine has been this way for many years, it doesn't necessarily mean it should be the same tomorrow.
Understand that the person has the right to express their preference, and for you to help them act on that preference if required, even if it makes your job harder or requires extra effort.
I often say that the number of people who have supported me across 35 years could fill a football stadium, and unfortunately, I'm not wrong. The number of support workers I have worked with would number in the thousands because of the high turnover rates that come with the position. Without exception, the people I enjoy working with the most are the best communicators. They understand what I need, and I help them figure out how to bring value to my life, rather than a sense of duty. That way, we can both get satisfaction out of our shared experience.
Artwork by David Steele.