What We Wish You Knew About Working (or not working) With a Disability

October is National Disability Employment Awareness Month, so I asked disabled people what they wish others understood about working, or not being able to work, with a disability.

Here's what we want you to know:

1. Wanting to work & being able to work are different things.
The disabled people I spoke to talked about missing their jobs, wanting careers, wanting financial independence & wanting to contribute. Not being able to work, or not being able to work full time, doesn’t mean someone lacks ambition or motivation. Sometimes our bodies simply cannot do what we want them to.

2. Being able to do something once doesn’t mean we can do it sustainably.
A good day doesn’t mean we’re better. Going out, having fun, looking after ourselves or managing a few hours of work doesn’t mean we could do the same thing for eight hours a day, five days a week. Disability & chronic illness fluctuate and sometimes the only consistent thing is the inconsistency.

3. Work can take everything we have, leaving nothing for actually living.
Some disabled people can technically work, but doing so uses all of their energy. That can mean no capacity left for cooking, washing, relationships or even basic self-care. Being able to maintain employment doesn’t automatically mean that employment is sustainable or that someone isn’t struggling.

4. Reasonable adjustments aren’t special treatment.
Flexible hours, remote working, accessible environments, appropriate equipment etc can be the difference between someone being able to work and being excluded from employment altogether. So many responses also talked about how exhausting it can be to repeatedly ask for, explain and fight for access needs.

5. Managing a disability can be a job in itself.
Appointments, medication, treatments, medical admin, symptom management, recovery, pacing & simply trying to stay well all take time & energy. Disability doesn’t disappear when the working day starts & sometimes just getting yourself ready and turning up is already a huge amount of work.

6. Our worth shouldn’t depend on whether we can work.
Not everyone can work and that doesn’t make someone lazy, less valuable or “lucky” to be at home. People told us about the grief of losing careers, judgement they experience when they aren’t working and feeling guilty for enjoying themselves because someone might decide that means they are capable of employment.

Disabled people deserve full lives regardless of their productivity.

What would you add to this list?

If you're an employer, manager or colleague, I'd encourage you to think about how your workplace supports disabled people, not just to get into employment, but to remain in work sustainably. And importantly, we need to recognise that not every disabled person can work and that someone's worth should never be determined by their productivity.

Please share this to help more people understand the realities of working, or not being able to work, with a disability. #DisabilityEmployment

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