Six ways healthcare workers can make life easier for people with disability

Disabled journalist Zoe Simmons suggests simple changes to take the edge off the exhaustion caused by “medical admin”.

Life can be pretty challenging when you’re disabled.

You have to deal with your symptoms, which can often be painful and exhausting. You have to deal with ableism and so many other barriers. And you also have to deal with a plethora of doctors and specialists - which means mountains of medical admin.

Being unwell is a full-time job - and it can be overwhelming. Our healthcare workers are also often overwhelmed, particularly in a pandemic. However, if medical professionals made a few small adjustments, it would make a huge difference to our lives. Such as:

Providing a written record of what happens in our appointments

When you’re disabled, you often need to see several different doctors and specialists. A lot of us have multiple appointments with multiple doctors every week - and sometimes, we’ll even have several appointments in a day.

It can be incredibly hard to keep track of everything that’s said in an appointment - especially if we live with brain fog or chronic fatigue.

Most specialists already keep notes from every appointment, so it wouldn’t be too much extra effort to simply send that summary to us.

Letting us fill out forms online

With so many specialists, there is so much paperwork to sift through. Filling out the same information over and over again is already exhausting - but what’s even more exhausting is dealing with forms that aren’t accessible.

Many people don’t own printers, can’t afford printing, or don’t have the energy to visit a library or somewhere else with a printer. In any case, paper forms aren’t accessible for a lot of disabled people - especially those who experience hand pain or have limited hand movement.

Online forms would benefit a lot of people, including staff, who no-doubt have a hard time deciphering paper forms.

Offering telehealth

One of my appointments is a 40-minute drive away, and often, I can’t get a parking spot. This means I usually have to walk a few kilometres, which is not only exhausting (thanks, chronic fatigue) but it also often results in a pain flare.

Telehealth means I can be treated from the comfort of my own home. Instead of waiting for hours in an uncomfortable waiting room with heightened pain, I can sit at home in my comfy pyjamas. It also allows me to get more done in my day, because I’m not spending all my time traveling from appointment to appointment.

Admitting when you don’t have the expertise

So often, doctors and specialists won’t tell you that they don’t have the necessary expertise to treat and support you. Instead, they tell you there’s nothing they can do, or that there aren’t any other tests or treatments to try - when this often isn’t the case.

I recently was lucky enough to see a private specialist who could access tests - and treatments - that were never previously mentioned to me in the public system. Even tiny bits of information can make a huge difference when you’re battling the medical industry for answers.

Offering bulk-billing - and telling us about it

Being disabled is expensive. Many of us pay thousands of dollars on medical bills every month, so offering bulk-billing can make a huge difference.

Recently, I attended a specialist appointment that was $400 for a 30-minute session. On my second appointment, I asked about telehealth - and the receptionist told me that, not only could they do telehealth, they could bulk-bill it for me. Would they have told me this information if I didn’t specifically ask?

Probably not.

Listening to us

This is probably the most important point on this list. So often, medical professionals just don’t listen. They don’t believe us, or they diminish our symptoms. They tell us it’s all in their heads. This often results in a refusal to give certain tests, or try certain treatments - and it’s often due to subconscious bias.

When it comes to our bodies, we are the experts. Someone might have a medical degree, but without lived experience, they will never have the expertise we do.

Listen to us. Let us have the tests we ask for, even if you think we don’t need them. Let us try medication or treatments. At the end of the day, it’s us that have to live with it - not you.