Disability vs Sickness, yet again.

There have been a number of blog posts recently either highlighting the divide between sickness and disability or calling for more unity. This has not been very successful and a number of the issues are, in my eyes, very well explained in the research paper "Why talk of illness entrenches discrimination" (Aug.2014, pay to view) by Liz Sayce from DRUK.

It assumes sick people only seek compassion, pity and being relieved of the duty of work. They have abandoned the social model and the need for support and removal of disabling barriers. It further goes on to assert that the recent welfare battles to ensure that some sick people are not forced into work when it is inappropriate is damaging to disabled people.

This paper illustrates perfectly how many disabled people feel about people who are sick. They are embarrassed by them. They make disabled people look bad. Employers should feel that disabled people can work just as well as non disabled people. It is damaging to "the cause" to mention that some people, as a result of their impairment, will either not be able to work, or will need to work part time or in a different way to others.

It is completely wrong to assume that everyone who identifies as "sick and disabled" doesn't need or believe in the social model. It is fair to say that many believe that it could be refined so as to better take impairment into account, while others say that it already does and that it has been misrepresented by some who take it to extremes.
The barriers in life for sick and disabled people tend to be less tangible than, say, the straightforward access requirements for a wheelchair user. Someone who is housebound might need their GP to offer them email access or telephone consultations. In the world of work, adaptations might include flexi-time, working from home, payment on results instead of hours, part time work, regular breaks, job sharing and many other such arrangements.
Yet even when sick and disabled people campaign for such practices to be more widespread they are met with anger from "old school" disability groups who, again, feel that this promotes discrimination by casting a bad light on "disabled workers". Yet these adaptations are just as necessary as a wheelchair ramp and the world of work is a distant impossibility without them.
Furthermore this impacts on many disabled people who would benefit from such improvements. It is not so simple a division as sick disabled people to one side and healthy disabled people to the other. Symptoms such as fatigue and pain for instance are not limited to illness.

But sometimes even with all the support in the world it will be impossible for some individuals to work. Please note that I say "individuals". Care must be taken not to imply that large groups of people with a certain diagnosis or impairment, rather than individuals, should automatically be assumed not to be able to work.

Main reasons for not working might include:

• The number of hours you can work being so few, or your reliability being so poor that working is completely economically unviable. In my case for instance, after 17 years of a deteriorating illness I was down to roughly 1 hour a day in a good week, and some weeks none at all. 
• The effort of working making the illness unbearably worse or even endangering health (this happened to me). This relates back to my first point as decreasing the number of hours to a point where it would not impact on the illness to an unreasonable or dangerous point would render the job economically unviable.

These are not pleasant positions to be in. Losing your career is a very difficult stage of your life and there is very little support for it. Instead there is condemnation, even from some in the disabled community. But the fact that some individuals are not able to work will always be true and cannot be hidden away, however inconvenient it is. At this stage the support required moves from removing barriers in the workplace to a financial one.
I don't believe this is seeking compassion or pity. In fact I still believe this is a social model viewpoint and that it is simply the type of support required which has changed. Without that financial support everything else will fall apart and the sick and disabled person will lose all inclusion in society.
I would even go further and say that there is a big unmet need for support other than financial for people who cannot work. This could include for instance signposting to free online learning sites, IT support for people who are housebound, and so on and so forth.

The view that if a person isn't working then they are absolved of all social responsibilities is a short sighted one and one which is a barrier to sick and disabled people in itself. It is sad to see it coming from the disabled community.
As someone who "lies in bed all day", I still feel strong connections to society. Thanks to technology I am able to keep in touch with many people. I support and advise people online. I have been able to take part in and attempt to shape political debate. I make sure to maintain relationships with many friends and family and even the local community. I continue to try to educate myself. More recently I have been able to take on a very part time role as a volunteer (6 hours a year!).
All of these things include social, educational, family and leisure connections and responsibilities. They are low level time and energy consuming compared to working. They are self imposed and don't create a financial revenue. This doesn't mean they don't exist, aren't important or don't have value.

In her paper Liz Sayce says that sick and disabled campaigners have bought into the government's rhetoric that someone either can or can't work. In reply I would say that many "old school" disabled people have bought into the government's rhetoric that a person is only integrated into society if they are working.

In summary:

• Don't dismiss my life because I'm living it from my bed.  
• Recognise the social contributions and responsibilities of those not in work. 
• Help ensure they can access the financial support they require to continue being included even after giving up work. 
• Help fight for access for those sick and disabled people who need alternative employment arrangements. 
• Everyone should be careful not to imply that groups of people be automatically assumed unable to work merely on the basis of their diagnosis or impairment, rather than a particular individual based on their specific circumstances.
• Finally, everyone should continue the fight for proper support and access, be it in social care, in leisure or in the workplace. As seen by the Access to Work crisis, unity is needed now more than ever.

"Better off dead"? Time to educate

A couple of days ago a twitter friend of mine was fed up by some frustrating things which tend to happen to disabled people periodically. She let off steam on twitter with the hashtag #heardwhilstdisabled.

This resonated with many disabled people who started to add their stories too. Before you knew it #heardwhilstdisabled was trending and continued to do so throughout the day, creating a testimony to the sort of ignorant, rude and sometimes upsetting comments disabled people too often face.
It created enough of a storm for the Independent to write about it.

Personally I recognised most of what was written. I quite enjoyed the day and reading the thread. It reminded me I wasn't alone and it wasn't my fault these sorts of things are said.

I used to get very upset by the things said to me. These days, it usually makes me laugh. The exceptions to this are things that stop a disabled people doing something (eg refusal to grant disabled access, or to serve someone) or actual violence.  For this reason I was amused rather than upset by a lot of the thread, although I accept that for some it must have made for harrowing reading.

I feel maybe I should explain my change in attitude, particularly given the anger my own examples gave rise to, in particular this one:

"If I were you, I'd kill myself" (perfect stranger, me happily waiting to cross road in powerchair on way to work) #heardwhilstdisabled

This, perhaps understandably, upset many people. I was asked how I'd reacted to it, with a number of people jokingly suggesting running him over and many saying they would have retorted it would be better if the stranger killed himself.

Rather naively I was surprised at the depth of anger and feeling. I don't feel this way and it is MY example! I admit that at the time I was very taken aback and totally shocked. But as I explained to the people on twitter what I actually did was:

I told him I loved my life and for all he knew his life was worse than mine. He didn't look happy at that! #heardwhilstdisabled

There is a good reason for this rather than my getting angry with him.

There is a flip side to #heardwhilstdisabled. Although I have lots of examples (and many more than I shared), they are spread over a period of 12 years. Over the same time  I have seen many people be friendly and approachable or go out of their way to help me, both friends and strangers.  In my experience there are friendly helpful people, indifferent people (probably the majority), ignorant sometimes hurtful people and malicious nasty people.

To the surprise of most people I class the chap who told me he would kill himself if he was like me as ignorant and hurtful, not nasty and malicious. This is someone who cannot imagine life in a wheelchair. This is someone who probably enjoys many things you cannot do in a wheelchair and cannot conceive giving them up. Faced with this he can see only one way out.

I can understand this. As I wrote in my last blog post, when I was 16 I was a sport fanatic. I remember I once foolishly and blithely said that if I couldn't play sport anymore I would want to die. At the time all my spare time was spent playing sport and I loved it. I was in France and school was hard and elitist (trust me, it is unlike anything you know here!). Sport was my escape and literally my life.

I honestly believed what I had said about wanting to die if I could no longer play sport. But strangely enough, here I am, mostly bedbound, as far away from playing sport as you can get, and with no desire to die whatsoever.

Admittedly I would never have gone up to a disabled person unable to play sport and told them that if I were like them I would want to die. There is NO excuse for that. But the feeling was there nonetheless. I couldn't think of a life without sport. I couldn't imagine coping without it.

I was ignorant but also underestimating my own ability to adapt. When the time came and I became ill, then disabled, it turned out that not only was it possible to adapt in ways I had been unable to conceive of but that life could still be quite fun thank you very much! In fact I know of people who are far more unhappy than I am.

So when faced with someone saying something like this, given enough time I feel I should tell them that
a) I enjoy my life
b) My life may be just as good as theirs
c) Everyone can adapt, including them

Now, this isn't to downplay the difficulties of being sick and/or disabled. And to get a) and b) you need the proper support and facilities otherwise life is going to be pretty awful. This is why I and many others have been fighting government cuts to social services, support and benefits.

But no one should think that someone who is disabled is automatically better off dead. There is always so much you can do, even stuck in a bed! I want to educate people on that, not simply get angry. And having stupidly thought something similar myself as a young teenager I feel maybe I can see where people are coming from and perhaps change their minds from "I would kill myself" to "I'd hate to have to do it, but I would adapt".