Wednesday, 2 January 2013

Invisible Disabilities

When it comes to disability you cannot judge a book by its cover. People with Cystic Fibrosis can be disabled. They may or may not need a wheelchair. CF is a complicated disease and many of the symptoms can be invisible. This does not make them any less real but it can create some challenges in a society which thinks disabled = wheelchair. The word “disabled” is out of date. CF affects people in very different ways and perhaps it is itself an unhelpful label. People with CF can do many things but they will probably find there are certain things they cannot do and that they sometimes need help. Inspired by the 2012 Paralympics, this article is about the dangers of using labels and the need to treat people as individuals. 

This is a controversial subject. I hope it makes people think without causing offence. These are just my personal views and, as ever, I am interested to find out what other people think about this.

The 2012 Paralympics made me think. When I was watching the Channel 4 coverage I realised I was doing something of which I am not very proud. Some people may think I am awful but I am, at least, being honest. When a new competitor came on the screen, I’m slightly ashamed to say I would basically give them the once over, see if they were in a wheelchair and whether they had all their limbs and/or any visible signs of disability. If they were not in a wheelchair and they had all their limbs, I would think to myself, “They look alright.” I thought this was a fairly primitive reaction but I know I was not alone and I believe this is basically how people think about disability. I was actually interested to know exactly what was wrong with the people because I wanted to know what kind of challenges they were dealing with from a human interest perspective. I actually would have liked to see the TV coverage include a very brief statement of the nature of their disability in the introductions. Maybe the athletes want people to think only about their performance. I can understand that. Nonetheless, it made me think about the nature of disability and the way we perceive it. 

The Paralympics were extraordinary. For me, they really epitomised the best of what us humans can achieve.  I found the performances and the opening and closing ceremonies extremely inspiring. This sounds ridiculous but it made me feel proud to be human. The way that some of the competitors had accepted and embraced their situation and focused on pure performance was exciting and energizing. They were not just doing the regular Olympic events to a lower standard than the regular athletes, they were actually doing their own events and some of these were more dynamic and exciting than the Olympic events. I felt empowered and humbled at the same time.

I actually wondered whether anyone with CF had ever competed in the Paralympics. I still don’t know the answer. If not, why not? Would one be allowed to use ambulatory oxygen? (I do know that several people with CF have competed and won medals in the World Transplant Games following a transplant which is fantastic but somehow different.) 

Cystic Fibrosis is a bit like autism in the sense that there is a spectrum – symptoms vary and range in severity. Some of these symptoms are visible, others are not. The fact you can’t see something doesn’t make it any less real.

CF affects different people in very different ways and the way it affects any given individual can change dramatically over time. Some people with CF can appear to be very healthy. Others can appear to be very sickly. Some may need very little support while others may, for example, need to use a wheelchair and portable oxygen or be unable to leave hospital. CF affects multiple organs in complicated ways. The way people look is not a reliable indicator of their health or their abilities (or much else for that matter). Yet society thinks disabled = wheelchair. The official symbol for disability reinforces this notion.

CF can be a real disability. My observation is that, if you are not in a wheelchair, people don’t always believe you are disabled and they may be suspicious of your motives. If you have a disease like CF which impairs your ability to do certain things at certain times but no visible signs of disability you are likely to get some insensitive or upsetting remarks as people may not believe you need special accommodation or they may even think you are faking or exaggerating your condition. I myself have experienced this in school, at university and at work. As I have got older and more self-assured I have learnt to deal with this by stating, calmly but firmly, exactly what it is that I need and why I need it.

On the one hand, we don’t want people to assume that just because we “look fine” it means we don’t need any help or accommodation. On the other hand, we don’t want people to assume we can’t do things just because we have CF.

Perhaps this is an impossible balance to strike and people can’t win!

On the one hand, we want to have as positive a self-image as possible, avoid sticking labels on ourselves and focus on the things we can do. On the other hand, there are likely to be certain things we cannot do, some adaptations we require and times when we need help.

Sadly, from time to time one has to demonstrate how one fits the criteria for certain of society’s labels in order to get what one needs. However, if you allow your thoughts to be polluted by concern for other people’s opinions and society’s unhelpful expectations, you will drive yourself mad trying to reconcile these conflicting feelings to no useful purpose. Don’t bother - life is too short.

Like the symbol above, the word “disabled” seems a bit out of date. It stems from soldiers coming back from war with limbs missing. It describes people who were once fully “able” and then had their range of ability limited somehow. It was not intended to describe people who were born with a disease which significantly impairs their ability to work and do other ordinary daily activities.  

People say some crazy things about this and even start inventing absurd new words which succeed in not offending anybody but completely fail to carry any useful meaning.  For me, the point is that some people have conditions that impair their ability to do daily activities to the point where they cannot do certain things or they need adaptations or allowances to be made. I think you have to say how things really are and not how you would like them to be. I think about myself as being handicapped by CF in the sense it is a burden which makes my life harder than it would be without it. I am not going to get tied up in choosing the right word to label myself. My condition and the limitations it places on me today are simple facts and I don’t mind asking for help when I need it.

Society says you should have a career, a house, children and certain other things. Society says these are what it means to have a life and if you don’t have them you are somehow not a proper person. This is complete rubbish. To be honest, a lot of “normals” I know end up mindlessly being drawn into an existence that includes all the ingredients society deems necessary yet they are bored, unfulfilled and, arguably, not living at all. To a certain extent, CF allows you to tear all this up and decide for yourself what is important.

I try to forget about society’s expectations and any ideas about what is “normal”. Normal does not really exist – I believe it is a misconception perpetuated by people who are insecure and seeking safety in numbers. These things are a kind of mental pollution. I try to think about my own particular nature. When I have figured out what I really need to survive and thrive, I just try to go for it and make whatever changes I can. I feel as though I have re-invented myself three or four times in this way as I have got older and my health and other things have changed over time. It can be difficult and emotional; and it involves sacrifice but it is about self-preservation and you can’t make an omelette without breaking a few eggs!

I have learnt to speak up more in general and realised that in many situations “the squeaky wheel gets the oil” i.e. you cannot rely on people to give you the things you need and are entitled to, you have to find out who can give it to you, demand it and get in their face until you get what you need. You need to be able to put yourself in other people’s shoes, understand their motivation and hussle. It can be tiring especially when you are feeling ill and your need is greatest but it is a matter of self-preservation and being true to yourself.    

I think it is vital to ignore media stereotypes and any labels, expectations and constraints that society tries to impose on you. Just ask yourself:

  • What can I do? What do I enjoy? What am I good at?
  • What do I want to do? Who or what exactly is stopping me?
  • Are there things I want to do but cannot? What things? Could I do them a different way with some adaptation or with some help? What adaptation? What help?

The Internet, social media and flexible working options are opening up all sorts of opportunities. There are many different ways to skin a cat. 

So forget about society and its labels – just keep your eyes on the prize and go make it happen!


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  2. A lot of what constitutes as 'disease' is a metaphoric construct. A lot of it is also real. It is what is being experienced by some of our fellows right now, to the point it impedes their endeavors and mobility. This should make them eligible for social security; a fact that many still hadn't come to terms with. It's what's been 'invisible' to them for a long time...

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