Content warning: Cancer care
I’ve been part of social change groups that are trying to run cooperatively for over a decade. Almost every time we’ve created or changed a staff policy, it’s been because we’ve needed to use it—immediately.
Writing policy that directly affects people in the room while trying to wrestle it through a consensus process at the same time throws up, er, shall we say… a few challenges.
Creating a carer policy while caring
The first time it happened, I was the person affected. I’d just joined a medium-sized campaign organisation, and it was pretty much my dream job – a cause I cared deeply about and had been involved in for some years, with people I was excited to work with. It was also the year my mum died of cancer.
I’d arrived straight from one of the big cancer charities where I’d been working on a carers’ rights campaign. I’d been working a condensed work week, putting in long days so I could take time off to go to appointments with my mum, and travelling home most weekends. My new workplace had no carers’ policy, so we busily started writing one. Ironically, I got a much better deal as a working carer in my new job than my old one!
With no formal HR department needing to sign off adjustments and flexi-time for all staff, it was easier to coordinate my job around our family’s needs. It was my best and least complicated experience of policy development – I lifted the campaign demands from the carers’ rights campaign I’d been working on in my previous organisation, and it was signed off. When my mum became seriously ill, I got a call at work, set an out-of-office reply, and got on a train home the same day. I came back two months later, having used the new carers’ leave allocation we’d created to be with my mum and then bereavement leave.
That was the easiest version. There was no pre-existing policy that needed editing, we had secure funding as an organisation and financial reserves, and we had a clear set of best practice standards to work from. It definitely caused some chaos when I walked out of the office that day, but we had an experienced staff team who fully supported me and picked up the slack. I’m still grateful for what it enabled me to do during the worst days of my life. In theory, writing policy with the person affected at the heart of the process should always be as easy as this – but if you’re visiting RadHR, I probably don’t need to tell you that it’s not usually that simple.
I was in a good position to ask for and receive support. Knowing the organisation and staff well before I joined meant I had strong relationships in place, so I could ask for what I needed and was listened to. But I wouldn’t have had that confidence in an unfamiliar workplace. My situation was also easy for staff to understand and relate to —and, therefore, easier to be generous about. I felt entitled to ask for support, partly because I had just stepped out of campaigning on the issue and partly because I wanted so desperately to be with my mum.
Being flexible enough for the trickier examples to fit
I used the carers’ policy again later that year when a close friend went through a mental health crisis and I needed time off work to be with them. I don’t think this would have been possible if I’d still been working for a big NGO. Granting time off for the child of a terminally ill parent to care for them is pretty hard for anyone to push back on. Asking an HR department to recognise my relationships with queer chosen family as a valid reason for time off work would have been a different thing entirely.
My workplace did the right thing and offered me support in both situations. But these situations, driven by a similar need to care for and support someone you love deeply, were treated very differently. I was asked questions that never would have come up with my mum – why was it my responsibility to care for this person? Couldn’t someone else do it? When would they be “better”?
Luckily, we’d written the original policy with an expansive definition of caring and care work, but honestly, I don’t know if we’d have made such a generous policy provision if this situation had come up first. It’s not just that mental health stuff tends to be treated less seriously than something like cancer – the relationships just wouldn’t have been intelligible in the same way. But good policies leave space for complexity. When developing or applying HR policy in groups, be aware of the tendency to be more generous with the most sympathetic or “straightforward” cases.
Policy design during your own health crisis
The next time I needed to ask for a new policy, I was in the midst of my own health crisis. We needed a way to create and sign off reasonable adjustments for me so I could continue working– in other words, a disability policy. I was newly diagnosed with a chronic health condition and struggling from day to day to manage chronic fatigue and sensory overload. We didn’t have a clear way of deciding what adjustments were “reasonable” other than our full-staff consensus process, and it took some “reasonable adjustments” just for me to be able to be in the room to discuss it. (I mean that literally – we worked in an old building with only one meeting room for our team. It had fluorescent strip lighting, and the first couple of times I tried to join a staff meeting, the glare set off my sensory overload, and I had to go lie down.)
This is where things get messy. If you’re not centring the needs and perspectives of the people most affected when you’re creating a policy to support them, you probably won’t create something that does what you need it to. But there’s a fine balance between centring someone’s needs and how you share the work it takes to creatively figure out how to meet them. At my sickest, I was signed off work by my GP for months, and when I came back, I was figuring out day to day what I could and couldn’t do.
Process over policy
This time, we prioritised process over policy. We started a working group to develop a disability policy, and while that was happening, we worked out a set of adjustments that let me continue to do most of my work. Again, I will always be grateful for that support – and it was really, really, really hard. I’d never dealt with a health crisis like this before, so while it’s an important principle that everyone is an expert in their own experience, I was figuring stuff out day by day – which is a pretty difficult place to advocate for yourself from. I didn’t know what to ask for. Most of the time, I just felt broken.
With a variable health condition which had ‘good days’ and ‘bad days’, I was trying to perform being “well” and capable at work while struggling with intense feelings of worthlessness. Fatigue is invisible and corrosive, and it’s hard for people who haven’t experienced it to understand that you don’t just mean “I’m tired.” It was difficult for colleagues to understand why I was able to do things one day and not the next. I felt caught in a Catch-22 – trying to perform ‘being well enough to be a valuable member of the team,’ and at the same time, afraid that if I did too good a job of covering up the struggles, no one would believe that I was sick and needed help.
Our team (and I) were learning about disability justice in real-time, and that learning curve was messy. That’s the hardest thing about developing policy in groups. People are often learning about an issue, sometimes for the first time, at the same time as trying to develop a policy on it. They need time and space to work through attitudes and assumptions to write good policies and make good decisions, but they often need to take action or make decisions to support someone NOW.
Confidentiality and collective process
It wasn’t clear how much I needed to disclose about my health condition to other staff and who needed to know what to support me – which was doubly hard for me to figure out when I was so unwell. I was hyper-aware that there are some broad guiding principles for disability justice – but that each person’s needs are highly specific. Most of the rest of the staff team weren’t disabled, and I kept feeling the need to take on the impossible position of ‘spokesperson for all disabled folks’, trying to navigate my own path but also figure out a precedent and a process at work for support that was flexible and inclusive enough to work for others.
That’s another tough bit of creating policies with people directly affected – we’re not a universal authority on all things to do with our communities. If your staff team is very small or isn’t diverse, there’s often pressure on individuals to stand in as representatives for the full range of experiences encompassed in massive labels like “disabled”.
The whole thing put a strain on our group’s decision-making processes. We usually made decisions by consensus: were the adjustments we were making open to input and discussion among the whole staff team? Some of them impacted other people’s work – did they get a say, and if so, how? How much did they need to know to understand what I was going through to agree on changes? Who “signed them off” – especially if they had financial or work plan repercussions, like reduced hours or paying for specialist equipment to help me work? What needed to be written down, and what records needed to be kept? And where did we store this sensitive personal data about my health?
It also raised some broader concerns about the implications of implementing generous policies – especially over time. When I needed time off as a carer for someone with a terminal illness, we were talking about covering parts of my work for a month or two – and that definitely had consequences. Now, we were talking about long-term or permanent changes to my job role, and it affected my whole team. We didn’t have a clear process to discuss this and work together to re-prioritise around needs, and you can’t make policies work in practice without that. Although it threw up greater challenges, I did get amazing support from my team. With some hindsight, I can also see how much we/I learnt – albeit the messy way.
Everyone’s work is interconnected
One thing I took away was that the practical systems you need to enact policies need to consider not just the person affected but everyone’s work as interconnected. Bad planning can cause resentment and conflict between people. If someone is out of action, tasks must be reallocated or re-planned. Deadlines need to shift. Increasing staff hours in other roles or hiring someone new to fill a gap needs to be budgeted for. It’s not going to work if you write generous staff policies that bankrupt your organisation or that give one staff member a generous amount of time off to deal with a personal crisis and then work the rest of their team into the ground because you didn’t re-plan work to cope with the change in resources. You can have an amazing suite of radical HR policies, but if you don’t have the systems to make them work, then they’re just nice words written down.
In both these cases, having strong relationships in place meant we could work through the issues that creating policy-according-to-need threw up. If I hadn’t had the support and encouragement from people in my team to ask for, plan for, and access support, I wouldn’t have had the confidence to fight for it alone.
Better than a boss
Many people’s experiences of work and employment are of precarity and punishment. We come to developing HR policies with rock-bottom expectations and without templates for something better, without a sense that employers can or will do anything meaningful to support us. Sometimes, we’re part of groups that prioritise “the work” over the people who are actually doing the work – or groups that are great at offering support to everyone except themselves. When we’re collectively running our organisations, there is so much work for us to do in bringing values around collective care, dignity and support to the front.
What was the best thing we wrote into all those policies? The phrase “or other arrangements at the employer’s discretion.” It sounds a little clunky, I admit – and if you’re used to your boss f*cking you over, even a little sinister. But as we wrote policies outlining rights, responsibilities, and entitlements, we knew we were never going to cover everything and that trying to plan for every scenario would just lead to bureaucratic and unworkable policies. That phrase was our get-out clause – code for “whatever else makes sense at the time that we didn’t think of yet.”
Because policies (especially the ones you write as you need them) need to be living documents – to grow, evolve and respond to the needs of your team. So write good ones. And write yourself some wiggle room into them, too. I won’t pretend there haven’t been times at work when I’ve thought, “I wish I had a manager who would just sort this out for me”. Then I remember what actually having a manager is like. Working collectively is hard, time-consuming, and takes a lot of trust and understanding.
But what we get at the end of it is usually way better.
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