Wednesday 30 January 2013

"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".

Friday 25 January 2013

Half a life?

Musings about the half of my life since I became ill and disabled.

At the end of this week I will turn 34.
Coincidentally it is exactly 17 years to the day that I went into hospital with what was thought to be a "minor head injury" following an accident during a handball match. We now know that it was in fact either the trigger of my lupus or my first real nasty lupus flare, although, because it "pretended" to be MS it baffled doctors for quite a while and I didn't get diagnosed until 4 years later.

Whichever it was it marked the start of my illness and subsequent disability, a completely life changing event. I went from an active sport loving teenager just about to finish school to someone stuck alone at home hardly able to sit up.

A half life biography

Eventually as the illness fluctuated and the doctors did get a grip on things matters improved. I was able to go back to school and get my A levels. I went to university to do a chemistry degree. Unfortunately the illness  worsened dramatically at the end of my first year and I got kicked off the course for "health and safety" reasons. My doctors advised me to abandon university and return home. Knowing that if I did I would probably never leave again, I refused and instead started a maths course from scratch. This was a really good decision as I turned out to be talented and maths is something you can do from your bed!

The next few years were very hard. My illness and disabilities were increasing. I had to give up every single hobby and sport I used to do, even those I had relearned to do from a wheelchair, like archery, and the new hobbies I had started like playing the clarinet and saxophone. I needed care, deteriorated from walking stick to wheelchair, was often so ill I was in hospital and even when not, could rarely attend lectures. Despite all this I finished my degree, graduated top of my year and got a golden hello award with my funded PhD place.

My PhD years were really fun and are among my happiest memories despite being highly difficult physically with many new symptoms developing, such as epilepsy and a rapid deterioration of my muscle condition. I made some very good friends I think I will keep for life. One great memory is trundling down the aisle in my electric wheelchair as bridesmaid at my best friend's wedding! I was terrified I would roll over her veil!

My PhD was also successful. I published a very good paper and on the back of that obtained an all too rare EPSRC funded postdoctoral research fellowship at the end of my PhD. My illness was getting worse and worse so I went 75% part time so that I could manage. I "officially" worked for a further 5 years. However I was off sick for most of the last 2 and eventually went on to long term sick benefits. I held out until I sent off the last paper I was working on for publication. At this stage though my memory and concentration were so shot that often I didn't recognise my own work from one day to the next or remember conversations I'd had with colleagues. When you're trying do do international research, this is a slight issue! I'd also had a couple of serious health scares.

Despite my sadness at having to give up work, I'm very proud of the work I did. We published some excellent papers in our field and as a result the group in which I worked ballooned from just two doctors and two PhD students when I started my PhD to one which now comprises 10 permanent members, 2 research fellows and 7 PhD students.

After giving up work I kept busy looking after my little god daughter and doing various enjoyable hobbies before eventually getting involved in disability activism. This became very successful when I co-authored the Spartacus Report. This and other projects with We Are Sparacus, in particular "Past Caring", took a lot of my time last year before I eventually had to call it a day as my illness had continued to progress and I could no longer manage.

I'm now at a slight crossroads. I'm never bored as I still have many hobbies but am not sure of any long term goal and am unused not having one.

Half a life?

So I have now officially been ill for half my life and my entire adult life. When I first got sick I used to think of my life in two parts: pre and post illness. I felt I only lived properly for the first half. I wanted to get better so I could start "living" again. I've realised that I don't do that any more. I'm not sure when this stopped, although I think it was quite some time ago. I find it is no longer possible to try to imagine my life "if I hadn't got sick".

The illness made me come back to the UK from France where I was finishing school. It made me switch to mathematics in which I had a successful (albeit short) international academic career.  It meant I took a strong active role in some disability activism.  It did make me give up things I loved like sport, but it also meant I tried other things like archery, learning the clarinet and the saxophone and playing in a concert band. In time as the illness continued to progress I also had to give those up too, but those are experiences I might otherwise never had had.  On a personal level it has shaped the person I am. I have some wonderful friends and am godmother to a beautiful 4 year old. These would not be part of my life otherwise. There can be no going back.

That said I do still wish I wasn't ill right now. I don't mind the purely "disability" issues quite so much as there are usually ways round them. Getting round the illness is far harder. Being "healthy and disabled" and being "sick and disabled" are two extremely different things.
When I was less ill and closer to the former, there were still ways of working around my illness and having a job and an active social life outside my home. But at this stage of the illness I can see no way round it and my life has become far more limited in the past 2 years.

But all in all I am usually content and often happy. I have some good friends and supportive family. I am always busy even if I cannot move from the daybed in my lounge 95% of the time. I am always bemused when I hear people bemoan that they are bored!

I have had to radically change my activities and hobbies and my life today would be unrecognisable to that of the young 17 year old who was hurt 17 years ago. She would most probably be horrified. In fact if I remember correctly, before the accident she once blithely said that if she couldn't do sport she would want to die! But then she hasn't had the benefit of 17 years of living and adapting and inexplicably finding that life is incredibly enjoyable under circumstances that most people would outwardly judge are not. Which, incidentally, is why no one should EVER judge someone else's life.

Half a lifetime of being ill? Yes. Half a life? No. Not only have I done a lot while being ill but I have enjoyed life while I have done it. It has been one heck of a rollercoaster ride and I am willing to bet it will continue to be.
Right now I do feel at a bit of a crossroads and am still adapting to having stopped work. I feel I want to find some sort of long term goal and am very unsure of what I can do. But hey! So far things have had a habit of working out in the end. Bring it on. I'm not done yet.

Tuesday 22 January 2013

ESA SOS: the world's silliest interview

On January 28th the government are changing the rules governing ESA, the benefit given to those who pass the Work Capability Assessment (WCA) and are found too sick to work.

Rather sneakily these changes are billed as "minor" modifications and so don't need approval. It was only by careful vigilance of disability campaigners that they came to light at all, with a full briefing written by Sam Barnett Cormack in a project led by Sue Marsh called #esasos.

See here for the original DWP memo and see in particular parts 15-18.

The two changes causing concern are these:

1) The WCA assessor can now "imagine" how an aid would help the claimant whether or not they have it, whether it is available, or how long the waiting list might be. This includes wheelchairs, guide dogs etc... They don't need to discuss this with the claimant.

Since they don't have access to medical notes it could therefore be the case that the claimant has tried a given aid and it has been unsuccessful, or that a particular aid is unsuitable (for instance a doctor does not want their patient to start using a wheelchair yet), or that it is simply unavailable (for instance guide dogs are very difficult to get).
Based on this "imaginary aid" the assessor can declare someone fit for work.

2) Many illnesses and disabilities have both "physical" and "mental" effects and in the WCA these are separated into two sections of a form.

  • For instance taking opiate type painkillers may cause drowsiness and lack of concentration, which is put down in the "mental health" section.
  • Some conditions such as MS and lupus can have both mental health (eg lack of concentration, memory and cognitive problems) and the better known physical symptoms. Typically someone with these conditions will have symptoms in both parts of the form.
  • Vice versa some mental health conditions can give rise to physical symptoms either from the condition itself or as a result of the side effects of often powerful drugs the patient is obliged to take.

From now on only the physical effects of a physical illness/condition may "count" and vice versa only the mental effects of a mental health condition. Everything else will be ignored.

This is simply farcical.

World's Silliest Job Interview:

Employer:  "Good morning. Er, sorry for asking but I can't help wondering why you are dragging yourself across the floor..."
Interviewee:  "Oh, I'm not... I'm using my imaginary wheelchair. Here we go."
*reaches interview chair and climbs up off floor into it*
Employer: "Um... Won't you have trouble getting around the office?"
Interviewee: *cheerfully* "Not at all. As I said, I will be using my imaginary wheelchair."
Employer: "I see... " *scribbles on notepad*

Employer: "So the job entails mostly general admin work and... *discussion about job ensues*
Interviewee: *yawns*
Employer: "Sorry, am I boring you? You seem rather unfocussed and tired."
Interviewee: "Ah, well I usually have to rest at this time of the day. And we've been talking a while so I'm finding it hard to concentrate. It is because of the morphine painkiller I take. But if I don't take them I can't work because of the pain. I'm also quite forgetful as another aspect of my illness. You might find I type out the same letter twice and forget to write one or two."
Interviewee: " But don't worry. We can completely ignore the fact that that happens, because those are mental health issues and I have a physical illness." *smiles brightly*
Employer: "NEXT!"

While I have written this in a light hearted way there is nothing funny about the fact that people with serious disabling symptoms will have them ignored and found fit for work when in fact they are not.

If you agree this is absurd, please contact your MP.
You can do this via Write to Them website.

Also see other blogs who have written about this in particular:
Ekklesia (Official Briefiing about #esasos and Sam Barnett Cormack briefing)
Diary of a Benefit Scrounger (Sue Marsh's blog)
We Are Spartacus (with example letters to send to your MP)