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Nothing about us without us.

You may have heard that quote doing the rounds a few times. To me, it’s super powerful and calls out a big problem with disability policy – it is often made with only minimal or token consultation with disabled people.

I’ve had cause to think about workplace disability policy a few times this year already, and now, during Endometriosis Awareness month, I really want to write about what I think good disability policy should look like.

1) Say why you have it, and do it properly

A lot of policies are all “Woo, diversity! 20% quota for people with a disability by 2050!” or something like that, but they don’t say why. At best, there is often a vague line about “because disability gives you unique perspectives!” and that’s it. That really makes it sound like the workplace is ticking a politically correct box rather than having a genuine desire to engage – employing us just becomes an exercise in making the workplace look good. Gotta catch ’em all.

What I would love to see is engagement with some of the real reasons employing disabled people is good. Reasons like:

• It’s good for the economy to have disabled people employed in the first place;
• It’s good for the workplace to have disabled people employed with reasonable adjustments so that they can produce their best work;
• We are able to provide diversity of experience and viewpoints that abled people don’t have;
• Having robust disability policy benefits abled people who are just one broken leg, back injury, car crash, or unfortunate diagnosis away from needing to use it themselves.

2) Make sure it is accessible

When you have a policy, advertise that you have it. Hand out hard copies at inductions. Pin it to your intranet. Make sure everyone knows it is there. Maybe make it compulsory reading, just like the code of conduct and your security policy.

Further, make sure everyone can actually read it. Is it available in accessible format for screen readers or text-to-voice readers? Is the language clear and simple?

3) Make sure the policies actually work

Maybe you have this really great policy allowing disabled people to access extra paid personal/sick leave…but they can only access it if they meet a whole bunch of extremely specific criteria, or are reliant on colleagues donating it, or they must have exhausted all of their annual leave to use it.

My proposal? Many workplaces allow you to buy additional paid annual leave at a one-for-one rate (e.g. you pay one week’s salary to get one week of additional annual leave), and the cost is spread out across your pay over several months or weeks. You usually have to meet some criteria, like you need to nominate a particular time to use it within.

Why not make a similar scheme for additional paid personal leave?Those of us with chronic conditions, who quickly exhaust our paid personal leave, often have to take random, unpredictable, but sometimes length chunks of unpaid leave. We might end up only have three paid days in an entire fortnight as a result. That can be really financially difficult.

If we could buy an extra, say, two weeks paid leave at the beginning of the financial year, and have that financial burden averaged out across our pay slips for the remainder of the year, we’d be losing just a few dollars a fortnight (or month, however often you are paid) rather than the majority of a single pay packet. We’d have a large additional buffer zone against needing to access our unpaid personal leave, and we’d be less likely to come to work when we are just a bit sick with a cold and spread our germs around because we are trying to guard against not having sick days during our next paralysing flare-up.

Sure, it should come with conditions to ensure it isn’t misused. I would recommend the following:

• A doctor’s certificate stating that you have an ongoing condition or disability that will sometimes necessitate unpredictable sick days at a higher rate than the general population;
• A cap on the amount (say an extra 2-4 weeks per year);
• Approval from your manager, noting that they have also ensured that you are aware of your other rights and options under the disability policy (e.g. flexible work arrangements);
• A requirement that we still provide medical evidence for that absence as usual;
• A requirement that we have three days or fewer of existing paid personal leave.

Conditions I would not suggest are the following:

• A ‘use it or lose it’ policy – some years, I might have a great year where I only need three days of personal leave (unlikely), but the next I may need three months. One good year isn’t indicative of my needs in the next year;
• No ability to roll over unused purchased leave til the next year (see the first point for why);
• A requirement that we have used all our annual leave – chronically ill people will rarely get to take actual holidays. Often, we’ve already exhausted our annual leave trying to ensure we don’t have large chunks of no payment due to having no paid personal leave. But holidays, breaks, mental health days – they are a right our abled colleagues all enjoy. They make people more productive, happier and healthier. Taking that away from us because we are sick means that the only time we get to spend away from the workplace is days where we are sick. Imagine if that was all abled people had too. It doesn’t make for a happy or productive workplace. Besides, if we are paying for our sick leave, we aren’t costing the workplace anything financially.

I think that the current crises highlights more than ever why the ability to acquire additional paid sick leave is vital. My wonderful workplace is providing extra sick leave to anyone who gets Covid-19, but not all workplaces will (admittedly, not all are equipped to). However, I would argue that being equipped for emergencies (not necessarily a global pandemic, but a bad flu season, perhaps) is part and parcel of running an organisations, particularly a large one. My supervisor says he banks on 1/3 of the work force being out during flu season for one reason or another; perhaps that is a good motto for anyone running an area with multiple staff.

4) Make sure your managers understand

I have been very lucky in my current workplace to have extremely understanding bosses, some of whom have very close experience with chronic illness or disability. However, not everyone is so lucky. I’ve heard nightmare stories of bosses who refuse to give disabled people opportunities, because they perceive them as:

• inherently unreliable;
• not entitled to ‘take up’ an opportunity that could go to an able-bodied person; or
• not up to the demands of the opportunity.

Whether it is because the manager views the disabled employee as less capable, or is micromanaging to ensure they don’t get in trouble for pushing the disabled employee past their limits, the effect is the same – no opportunities for the disabled employee. That means no promotion, no career advancement, and a waning desire to remain in the job.

Having managers be educated, supportive, able to talk to the disabled employee about their needs, and able to strike a balance between supportive and over-protective is key. Get managers trained in having disabled staff.

5) Create visibility, opportunity and education

Finally, ensure that your disability policy doesn’t just employ disabled people and support them at their current level; make sure it allows disabled people to move through the ranks. Encouraged higher-ranking disabled people to be open about their disability by creating a culture in which doing so does not disadvantage them. For people at the bottom of the ladder, seeing that there are disabled people on the rungs above them gives them hope that they can also achieve that, which creates motivation and provides better workers for the employer.

It also normalises disability for people who aren’t used to seeing it, particularly in positions of power. That creates an all-around more inclusive and accepting workplace.

Don’t just stop at educating your managers, who will be supervising and mentoring disabled people – educate everyone. My workplace does sessions based off the ABC show “You can’t ask that” that allows non-disabled staff to ask questions about disability in an anonymous, judgement-free way, and hear answers from people living with those disabilities. It’s a great way to educate without having formal training sessions (which can be kind of weird and alienating when you are the person that the session is about!). Create days about diversity – have stalls and education campaigns explaining what it is like to have a particular disability. Send out newsletters. Educate the masses.

That’s my hot take on what larger workplaces can do to ensure they have a useful, robust disability policy. Do you have any suggestions I’ve missed? What does your workplace do well in this area? What does it do poorly? Let me know in the comments.