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8 days a week – Support Workers and How I Learned to Be the Boss

Andrew Grant

Support workers. I don’t know about you, but sometimes I feel as though they are the bane of my existence. The very notion that I am going to need a support worker three times a day for every single day of the rest of my life…well it’s a bit hard to get my head around some days.

The counterpoint of that opening statement is – how lucky I am to have support workers! And to live in a country where as a person with a disability I am valued and cared for, and there are people out there that actually choose to look after people just like me for their job, wow!

Support workers – a necessary evil?

Andrew with his co-author, Pickle

Each day and each week I swing from one of those points to the other like a pendulum…or a wrecking ball. I have Muscular Dystrophy, in hindsight I have had it my entire life, but it only became a dominant force at around age 30. Up until then I was quite active, restless even, and I always had to be doing something, going somewhere or making something. Now I find myself in a semi-permanent state of “rest”, not really being physically able to do a great deal at all – without assistance. Enter the support worker.

I understand that much of the sheer frustration that I feel on a day to day basis is unreconciled, and goes on to manifest in other areas, like the internalised emotional outburst I feel when my support workers fall short of this imaginary line of acceptability that only I can see. And what do we do with these feelings of frustration? What do you do? How exactly are we all coping?  I think I place an expectation on myself to try and be stoic and keep my head down and keep going, but that’s a false economy in a way isn’t it. I’m not actually working my way through anything, I’m bottling it up and saving it for when someone cuts in front of me in my wheelchair at the checkout in the supermarket, or when I’ve waited 10 minutes to use the disabled toilet, and an able bodied person strolls out.

Peer support helps

If you’ve read along up until this point and are beginning to wonder what my answers are to these deep and powerful feelings….I’m sorry, but I don’t have any. What I do know, and what I have found, is that spending time around other people that share a similar set of challenges as yourself is really cathartic. I have been involved with a handful of disability-centered projects, and have occasionally found myself as part of a group of people with physical disabilities, and it has been in those moments I have experienced this almost magical sense of …not belonging, but a comradeship of some sort.

Being able to speak freely without feeling judged. Being able to listen to someone else’s experiences and truly identify with what they have experienced.  These shared moments often end without words, but with this facial expression of mutual understanding, when someone “really gets it!”

Roles and boundaries

I’ve found in the past that when I’m sitting on my bed in the morning, getting dressed by a complete stranger, well I’ve felt a little bit awkward. I think in an attempt to overcome that awkwardness I have a tendency to talk, so that I feel less self-conscious, perhaps talk a bit too much, perhaps out of nervousness. I’ve noticed in those moments that the boundaries between employer and employee can get a bit blurred, and I’ve tended to behave toward my support workers more like a friend than an employer. In hindsight I don’t think that makes for a healthy working relationship.

In one case that has ended up with support workers showing up for a late evening shift and feeling comfortable enough with me “as a friend” to disclose that they’ve had a few drinks. Maybe a few too many, and that leaves my safety at risk during manual handling.

I’ve never wanted to be anyone’s boss, and I have never felt comfortable with pointing out that someone’s behaviour is unprofessional, but that’s the role I find myself in. Last year I had actually let this get so far out of hand that in the end I have had to disengage with my previous service providers and start from scratch with a new agency. This was an awkward situation for all concerned and one I never want to repeat.

Finding support workers

The act of finding a new agency in this NDIS era is an adventure in itself. Searching through support agencies is trial and error, my only advice – just be persistent. What I have found helpful is keeping a list of agencies that I have contacted in the past and that I deemed unsuitable, because after reading though thirty or so agency descriptions they all start to sound the same and it is easy to forget who you have and haven’t already spoken to.

I’m heading into this New Year with a new agency and a new attitude – I can’t be everyone’s friend and that’s ok. My role as the person with a disability in need of support comes with responsibilities on my part, and I have to clearly define what I see as acceptable and unacceptable and it’s up to me to speak up clearly and immediately when support workers stray off the path.

Qualities in good support workers

I have realised that there are a few specific qualities that are important to me when it comes to support workers:

1. Punctuality

In my opinion that means that they have respect for their job, indicative of a good work ethic, someone that will show initiative and commitment. When someone shows up at any time randomly between 4:40 to 5:20 then I feel I have to be ready and waiting for a longer period to let them in, that eats into my personal time. A punctual support worker makes me feel less anxious.

2. Honesty

People break things, that’s a fact of life, but if there is some sort of incident during their shift I prefer that they come and tell me straight away, more often than not we have a laugh about it and I tell them not to worry, but if they for example break the vacuum cleaner and sticky tape it back together and hide in the cupboard, I’m less accommodating. I see that as a sign of poor character and it makes me feel uneasy having people in my home that I feel I need to watch.

3. Communication

You have to be able to speak to each other and understand each other. You might think that is a given, right? But no not necessarily. I’ve asked for a glass of water before and been presented with a bucket. That might make for a funny story, but when you’re trying to convey manual handling procedure or talking about getting into a comfortable position that you will have to maintain for the next 10-14 hours it becomes a lot more serious. Clear communication and understanding is vital.

New approach

In the past I’ve had a bit of a “set and forget” attitude when it comes to support workers. I figured that once I had shown them what to do a few times that should be the end of it. This time I’m taking a different approach, I’m looking at having a bi-monthly training session to brush up people’s skills, an hour where collectively we talk about our individual strengths, team building, much like a staff meeting to keep everyone on track.

Having a team of great support workers is the difference between feeling both comfortable and relaxed in your own home and wishing that the ground would open up and swallow you whole. Having a degenerative muscle wasting disease causes me a fair bit of stress and anxiety already, being further stressed and more anxious about support workers is something none of us really need. The employer and employee relationship requires a bit of finessing and mindfulness to keep the wheels turning. At the moment my household runs like a well-oiled machine, and that makes the daily inconveniences of disability a lot easier to deal with, it makes me feel like a “normal” functioning human being.

Between you and me, I’d rather be the fun guy that people have a laugh with, but in my case that has come at the expense of getting good quality and professional support. I’m hoping that this time around all parties will benefit from a more consistent and professional working relationship.

 

Andrew Grant was diagnosed with Limb Girdle Muscular Dystrophy at the age of 28.  He then started a lengthy transition from working in very physical roles in construction and hospitality to pursuing tertiary education at TAFE NSW and the University of New South Wales. Andrew has attained a Bachelor of Fine Art for UNSW and is self-employed as an artist. His recent self-portrait, ‘Waiting for the NDIS’, was entered into for the Archibald Prize 2017. The portrait is a manifestation of the wait for the National Disability Insurance Scheme. Andrew also regularly participates in disability advocacy roles with St Vincent de Paul’s Ability Links Program and Nova Employment, as well as Mosman Council. Andrew lives in inner Sydney with his co-author/cat Pickle.


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