What I’d like to tell people about working as a disabled person

It feels like I’ve read hundreds of articles lately sounding the alarm on the “record numbers of long-term sick people out of work!” followed by pledges from politicians about how they’re going to get disabled people into work.

There’s talk of tightening the criteria for out of work sickness, increasing the use of benefit sanctions, and highlighting the possibility of home - and flexible - working. This assumes that there’s a sub-group of unemployed people who, despite their disability or long-term health condition, would be able to do some form of work.

So, why don’t they?

As a disabled person in work, I am perhaps a good poster child for the “back to work” agenda. Despite having an energy-limiting condition, as well as low mobility, I am able to work in a fulfilling career. But what did it take for me to work?

Here’s 3 important factors:

1. The right role and organisation

To be able to work, I needed a role that could be done fully from home. Despite claims that this is now a widespread possibility, on the Government’s own ‘Find a Job’ website less than 3% of roles even mention home or remote working. And in many cases, while you may be able to work from home a few days a week, you’ll still be required to regularly come into the office.

I also needed to be able to work part time and have flexible hours. And while many roles are part time, they often want you to work your hours in one go — like doing 2 full time days rather than 5, or working 4 consecutive hours per day. Neither of these types of part time work would have been possible for me. I needed a role where I could split my hours up, so I’d have plenty of time to rest and recover in between. This kind of role isn’t easy to find!

I also needed a job where I was allowed to be disabled. That means getting adjustments without judgement or stress, a line manager who will let me take as much sick leave as I need, and the ability to take it easy on days where I’m not feeling well. For many jobs this just isn’t possible, either due to the nature of the role, or organisational rules and culture. Even employers who want to be inclusive may fail to offer suitable adjustments if they haven’t got the right awareness, training and finances in place.

2. The right skills and experience

The truth is that the jobs with the best benefits and most flexible working hours are often reserved for people with university degrees and some level of work experience. So, even where these amazing, flexible jobs exist — for many disabled people they’re just not accessible.

In my case, I was extremely fortunate to be able to finish my education and gain some work experience before I got ill. That meant I had a good university degree, and several full-time, in-person internships in my pocket. Without these things, I wouldn’t have the job I currently do.

When you’re disabled it can be especially hard to get the skills and experience you need. Many people will face interruptions to their education, or difficulties completing training courses designed for non-disabled people. And the longer your career or education break, the more difficult it becomes to get a role, even if you would be good at it.

3. The right balance and support

Without the help and support of the people I live with, I wouldn’t be able to work. Household chores such as cooking and cleaning take up a significant amount of energy, which I use for work instead. Many people can’t outsource these tasks, making work almost impossible.

It’s easy enough to find out if someone can sit at their computer for a few hours at a time. But what matters more is whether they can get dressed, prepare and eat 3 meals, do a load of washing, and still do a few hours of work — on the same day.

And that’s just the basics of life! As humans we need time with friends and family, the ability to get fresh air and practice movement, the mental space to rest and reflect. For me, working comes at the cost of a real weekend — because I need the time just to recover. This means I’ve missed weddings and time with friends. I also get less annual leave than others, because I need to use half of it just for resting. Because I love my work, I feel the trade off is worth it. But if you just looked at my paycheck, you probably wouldn’t think that the financial benefits of being in work are worth the cost to my personal life.

Scaling up

So what does this mean for other unemployed disabled people who ‘could’ work?

The ‘could’ comes with a lot of caveats. Because people need the right role, the right organisation, the right skills and the right experience. And even then work may still not be a possibility. If working even a few hours would leave you in significant pain, if it means that you don’t have enough energy to prepare food for yourself, if it comes at the cost of all other life… then work isn’t actually an option.

Rather than casting disabled people as lazy, obstinate or entitled, the government needs to focus on enabling and supporting them. We need roles that can be done flexibly, part time and from home. We need organisational cultures and practices which are truly inclusive and supportive. We need education and training opportunities tailored to the needs of disabled people and people with long term health conditions. And we also need a recognition that disabled people need to be able to experience life beyond work, too.