Illness is never a failure

I am a 46 year old white male, what do I know about prejudice? I thought I’d get that out of the way at the start because I have not suffered from prejudice directly but I have seen its effects on the people I love and care for, as well as those who’s experience I can only guess at.

What I want to try and explain is why I think it is important that prejudice needs to be called out by those who are not affected to show that it is not acceptable.  I also would like to try and explain how it is not the overt prejudice that is the problem (that is easy to spot and call out), it is the insinuations, whispers and, for a better word, institutionalised prejudice that is the hardest to change.

Why do I care so much about this?

My wife has a condition called fibromyalgia that causes her to be in pain constantly as well as suffering from fatigue, brain fog and sleep disorder. It is also a condition that means that while you may be able to do something such as going out for a walk one day, you may then not be able to do anything for the next three days.  This means if you see her out and about it does not mean she is better, she is just taking advantage of a better day which will be followed by several more days of increased pain.

My son has ADHD and Dyspraxia and other difficulties that don’t really have a specific name.  This means he struggles with concentration and how he understands concepts, he is far more visual in his learning than others for example, all of which affects his ability to learn at the same speed as others.  He is not unintelligent, he just learns in a different way.

I’m writing this during depression awareness week, and while I know less about this area this is another hidden illness, as described in a piece by Tim Lott – “What does depression feel like? Trust me – you really don’t want to know“.

All of these conditions are hidden, in that there is no real outward signs such as being in  a wheelchair, but do show in subtle ways that can be misinterpreted as either not trying hard enough or appearing a bit odd.

Some History

Before I say more about the way that these hidden conditions are talked about I wanted to give a bit more history on what has prompted me to write about this now.

I found out last year that someone I had gone to school with had become pretty famous, but only after one of my school friends reminded me that he was in our year.  Once I realised that I remembered seeing him around the school, but I did not really know him beyond saying hello.

His name is Steve McQueen, Turner Prize winner and director of 12 Years a Slave among many other film and art projects, and yes I am blatantly using his name to draw people’s attention to this blog post!

One thing that took me back a bit, apart from the ‘I went to school with him’ pride, was his view of his time at school (see the Guardian article – Steve McQueen: my hidden shame), which I did not recognise at first but thinking back I could see.

There was no overt racism, well not from the teachers anyway, but by assuming that the black kids were not going to be a success and putting them into lower groups showed the prejudices built in at the time.

It is these actions that provide the acceptance in the school children’s minds that this is how things should be and take that attitude into adulthood.

That was 30 years ago, but these attitudes are still in evidence as highlighted by Lenny Henry (Lenny Henry: TV industry has taken ‘baby steps’ on diversity) and progress is slow.

How attitudes affect people

Going back to the prejudice against the ill, sick and disabled what I see is that in adult life these are all seen as a weaknesses, something that shows a person just isn’t trying hard enough to overcome or they are ‘swinging the lead’.

This is reinforced by the Government’s current drive to reduce the welfare budget by making it harder to qualify for benefits, which is supported through newspaper articles talking about ‘benefits cheats’ and ‘scroungers’ making them out to be a far bigger problem than they actually are.

The messages pumped out are that we should all be ‘hard working families’ and are ‘all in it together’ (or not according to Iain Duncan Smith’s resignation letter).  The unspoken message that is picked up by those unable to work is that they are worth less than other people and are no use to society.  All this does is to add to the guilt they feel for not being able work or even do the day-to-day activities that others enjoy.

For those in work there is a constant fear of taking time of in case their job prospects are affected.

For those who can’t work this attitude is used as an excuse to have a hard line policy when assessing people for benefits, which has led to the work capability assessment used to determine if you are fit for work.

Having helped my wife through this process I can tell you it is one of the most stressful and demeaning things I have ever experienced.  Someone who is already ill is made to first answer questions about how far they can walk, can they lift a box, can they go to the toilet unaided, get out of bed, make a meal and more.  Each of these questions has a fixed list of answers, which all attract a certain number of points.  If you don’t get enough points then you are deemed fit for work.  A lot of the questions are structured so that you can’t get across the subtle problems that mean you can’t do something.  Many illnesses and disabilities are variable in their effects and it is the overall impact that is causing the problem, not whether you can lift a box or not.

There is a good video that shows the impact of the test, done by Nicky Clark.

If you get past the questions you may then be subject to a face to face assessment (not a medical) where a health care professional runs through the questionnaire again but makes you do the activities.  Sometimes this is done without you realising, for example by the assessor making you walk, a distance further than you would get points for, to the room and seeing if you can do it.  The natural reaction of most people is to try and not make a fuss, this will then go down as you being fit for work.  What is not taken account of is the fact that the person may not be able to do this more than once, which is why they can’t work under normal circumstances.

The result of these tests can be catastrophic.

These attitudes end up so embedded in peoples thinking that it is taken as an unquestionable truth that being ill and having to take time off is something to be frowned on in businesses, government, local authorities and schools.  It is of course not something that is explicit, nobody would say that they discriminate against people who are ill but there is always the unspoken assumption that people are not trying hard enough or trying to deceive to avoid work. This comes across in the looks, passing comments and other small things that people do unconsciously.

All these little things make the life of people who are already struggling that bit worse.

Illness and disabilities can strike anyone at any time, and in an instance society marks you out as a second class citizen.

But it doesn’t have  to be like this.

How to make a difference

The first thing that makes a difference is accepting the fact that everyone is different, with different strengths, different abilities and different personalities, but they are all human with hopes, fears and feelings the same as everyone else.

Then think, “that could be me”. Think how you would feel if someone judged you before knowing anything about who you are.

The next step is to call out the prejudice and discrimination when you see it happening, raise the awareness of those who set the policies that unintentionally impact people with hidden or visible conditions. Make them aware of the impacts, and even if they do not make changes straight away at least the process of change is starting.

It is not easy to think like this, especially when you have you own goals that may be harder to achieve if you have to help out others, but the ultimate reward is a society in which we harness everyone’s abilities.

This may all sound like utopian namby pamby touchy feely nonsense, but I hope I’ve at least prompted you to look around at society and spot were people are being made to feel bad because of something they have no control over.

It’s a long road, but we need to start somewhere.