Limits and Payback 

Well, if she can stand in front of a TV camera and argue with a politician about disability benefits, then she can get a job.’

I overheard someone saying this about a woman who was campaigning about changes made to disability benefits and how they penalise people in genuine need. Wow. It annoyed me for two reasons:

1) Does that person think that all disabled people are bedridden, unable to articulate themselves clearly or have a physical disability, such as being in a wheelchair?

2) How can that person possibly know what the woman is and isn’t capable of just by looking at her? No wonder disabled people face so much prejudice and discrimination if people make snap judgements for daring to fight for better treatment from our government in public. 

But it is all too common an assumption: if they can do X, then they can work. There is this myth that half the country are wrongly claiming benefits for disabilities which they have fabricated and tax payers need to question everyone who ‘looks’ like they could be at work. Actually, the percentage committing fraud is tiny and insignificant in comparison to the number of genuine claimants, and you’re always going to get people who play the system so it would happen anyway, benefit reforms or not. But that doesn’t make a good news story or win election campaigns.

Anyway, politics aside, despite what people might think, just because someone can do X, doesn’t mean they’re fit for work. I’m going to talk about two things that people with disabilities have to take into consideration in their daily living; limits and payback. 

Limits

The phrase ‘know your limits’ is often applied to alcohol consumption and is different for everyone. One person might be able to drink 6 pints, another only 1 before they reach their limit. In fact, the person who can drink 6 pints one day might only manage 3 in another day if they’ve not had enough sleep, not drunk enough water or not eaten. There’s a rough idea, but it sometimes changes. The same applies to disability- there’s a rough baseline but it moves, often depending on things like quality of sleep, hydration, ability to take nutrition… etc. 

The thing about having a job is you have to:

  1. Turn up at the same time every day and work a prescribed number of hours. 
  2. Be at work every day.
  3. Be able to travel to and from your job safely. 
  4. Do activities required by the job role, not what you feel you can manage.
  5. Conform to work place protocols (or your reasonable adjustments made by your employer).

Someone who is disabled might be able to do all of those things on one day. That would be like being able to manage 8 pints one night rather than the average 6. But then the next day would be like trying to drink the 6 pints again. Realistically, you’re going to feel terrible. You might be able to do it, but most likely you’d only cope with 4 or 5. Then the next night you’re expected to do it again and you manage a pitiful 2. Then your body gives up completely and you spend the next 3 days vomiting. Suddenly you’re not able to manage to get to work on time and do your job, let alone anything else on either side of it like making dinner. It’s not sustainable living like that. 

There’s a difference between being able to plan tasks around what you can manage within your limits versus having to do set tasks within a specific time frame while working. There are two things to consider here as well: 

  1. It takes a long time to work out your baselines and limits in terms of what you can manage, and it also can vary daily. Some  illnesses change so much every day it’s impossible to work them out. 
  2. A lot of disabled people don’t like admitting what they can and can’t do to the full extent, meaning they might push through something at work which then could have serious consequences to their health. Just because they’re doing it, doesn’t mean it’s safe for them to do it.

So yes, that woman was stood in front of the camera. But that was possibly her 6 pint day, and she’d only manage 1 pint days the rest of that week. Or she would be working with payback. 

Payback

As everyone does, disabled people look at aspects of their lives and think ‘I really want to do that, I’m going to find a way of doing it which is within my maximum limits but will result in some payback’. Some people might be thinking ‘well no, why should you be able to do it, you’ve got a disability and you know it’s a bad idea, don’t be stupid.’ The answer is because if we don’t, we don’t really live. And that’s a miserable existence, more miserable since having a disability already makes things tough. 

Think about it. The 6 pint person will drink more than that when they go on holiday or on a special night out. They know they’ll get the most incredible hangover the next day as payback but they do it anyway. How is that any different from a disabled person expecting payback for having done something? It’s not, but for some reason people assume that disabled people have to live their lives as hermits and not do anything that they might – dare I say it – enjoy. Payback is like a hangover but it can last varying amounts of time and present in different ways depending on the disability or illness. And unlike someone who’s had fun partying, disabled people experience payback for things they don’t like doing/want to do too which have to be taken into account e.g. Grocery shopping.

The woman on the news might have spent the next week lying in bed to recover, or in excrutiating pain, or even in hospital. But is it worth payback, standing up for disabled rights because benefits assessments are currently being done by untrained professionals who say you’re fit for work because you can sit and have a conversation for 30 minutes, ignoring the professional opinion of doctors who treat you? 

Yes. I think payback is completely justified then. But it would and should be anyway. Disabled people have a right to live without being made out to feel like a fraud or like they’ve done something wrong, just as much as someone who wants to drink 8 beers one night shouldn’t be automatically named an alcoholic or a hooligan. There are always people who take limits and payback too far and overburden the system, either because they falsely claim benefits they don’t need or because they need an ambulance because they’ve drunk 15 pints and poisoned themselves. But there are also decent, rule abiding people who just want to get as much out of life as they can, who don’t deserve to be tarred with the same brush and get the help they need and are entitled to. 


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