Friday, 28 June 2013

Inspiration to Scrounger, a personal story

I wrote this post in anger after one too many people accused me of being lazy with zero knowledge of my illness or background.

AGES: 19 ,  20,  22,  25, 31

Image is a purple background with butterflies and a caption "a lupie life". 
It shows 5 photos of the same woman of increasing age (19 to 31) from left to right. In the first she is jumping, in the second standing with a walking stick, in the third sitting in a manual wheelchair, in the fourth using a powerchair, and in the fifth lying reclining on a daybed. She is smiling throughout. 

Sick or Lazy?

So why don't I work? The main problem for me is that my main illness, lupus (SLE) has not responded well to treatment. Over the course of the past 17 years it has gradually affected more and more systems in my body, causing a long list of symptoms ranging from minor to major, not to mention overall issues such as severe pain and exhaustion. It is easier to list the specialist consultants I haven't seen than those that I have. I no longer know how many scans or biopsies I've had, nor how many stays in hospital. I've simply lost count. There are very strong drugs which do help but I am still continually "ill".

On top of all this I have a separate disabling muscle condition which is progressive, hence for instance the use of my electric wheelchair and the need for personal care from social services.

The mobility side of things got worse quicker but did not prevent me from working, thanks to a very accessible job as a university mathematics researcher (yes, some of us enjoy that sort of thing!). I did work while very ill but 14 years on things eventually progressed to a point when it was simply no longer possible to continue.

Ever since then I have had to put up with being called lazy, accused of not doing enough to get better, or not having a positive enough attitude.

The irony in this is that for the previous 15 years it was the complete opposite. I was called an inspiration. Note that I have had no control over how ther people have chosen to see me. They have lazily assigned me to a stereotype: supercrip/benefit scrounger.
Yet all along I have been exactly the same person, with the same character, determination, willpower and desires.

My Track Record 

The "inspiration" years:

Jan 1996-1997: Start of illness exactly one week before my 17th birthday (triggered by a minor head injury in a sport accident). 18 months off school, undiagnosed, untreated. I'm permanently sick, have lost all sense of balance, am unable to sit up and spend most of the time undergoing medical investigations.

1997-1998: Illness goes into what we will later know is a remission. I'm still undiagnosed but we put everything down to a "glitch", decide I'm "cured" and I go back to my "old life". I relearn to walk, return to school and do my A-levels.

1998-1999: First Year of University
I start University. The illness returns in Easter. I'm still undiagnosed. Due to symptoms from seemingly separate muscle condition I require social services care. I get kicked off my Chemistry course for "health and safety" reasons. My doctors tell me to give up, go home and take a year or two off until things get better.

1999-2002: University Degree
I decide to ignore the doctors as without diagnosis I have no guarantee things will improve. I start a new university course in mathematics on the basis I can do this from home if required.
I get diagnosed with Lupus (SLE) but treatment is only partially successful. I have numerous flares. I am housebound for months at a time. Some semesters I miss all lectures. I spend unpredictable time in hospital. I develop more and more symptoms such as poorly controlled epilepsy. Mobility wise I deteriorate from walking with a stick through to using a manual wheelchair.
I am offered a deferral by the university but turn it down, reasoning that I cannot be sure I would be any better the following year. Instead I need to find a way to work while ill. I learn to work solo from books and photocopied lecture notes.
Thanks to this I excel at end of year exams and eventually graduate top of my year with a first.
I win the Second Year Prize, the Final Year Faculty award, a joint University-City Outstanding Achievement award, Young Achiever of Hampshire award and a Golden Hello awarded to outstanding students for starting their PhD.

2002-2005: PhD. 
Both lupus and muscle related symptoms deteriorate steadily. I face numerous health scares (eg during one epilepsy deterioration I am "bluelighted" to hospital no less than 9 times over the course of 3 months). I have to cope with an increasing number and severity of symptoms as more systems are affected.
I start using an outdoor electric wheelchair in 2004 as soon as I get accessible accommodation and office.
During my PhD I am housebound for a total of 20 months off and on. I'm also in and out of hospital and unable to work at all for a total of 6 months. I end up working very strange hours as am often awake most of the night with pain or other unpleasant symptoms I won't go into. It isn't uncommon for me to be doing mathematical research at 3am to take my mind off it!
Despite all this I finish on time and write a highly influential international standard paper which nets me a very competitive and prestigious EPSRC fellowship.

2005-2010: Research Fellowship.
Due to the effects of my illness I go 75% part time, having estimated that I am too ill to work 20% of the time.
I can only go to work mornings due to a complex and varying mix of symptoms and a worsening problem sitting up for more than a few hours due to my muscle condition. I sleep afternoons and then work evenings/middle of the night when I am often awake due to poorly controlled pain. (While I could take better painkillers, the side effects would affect my cognitive skills too much for me to be able to continue my job as a researcher).
I still go to selected conferences and seminars to give my talks even though it makes me ill for over a week afterwards.

As time goes on I have to cut down on the number of days I go into the office.
By 2008 I am only going into the office 1 morning a week. I an now using an indoor electric wheelchair. I can no longer physically write, which impacts quite drastically on my ability to do my job. My health is very bad. I am now often not only housebound but bedbound too. There are numerous hospital emergency inpatient admissions. I have to have time off. By 2010 this will have added up to a total of 18 months.

However I still don't stop yet; not so much out of a sense of obligation, but very simply because I love my job and don't want to give it up until I absolutely have to.
And so I continue my research, whether in bed or in hospital. I advocate the use of telecommunication to work from home and even give guest talks remotely thanks to new technology. 
Thanks to this I am able to complete my research, establish my reputation as a young upcoming researcher and write 3 more successful international standard papers. 
Unfortunately by this point the illness has started affecting my cognitive skills, in particular my short term memory, which makes continuing in this line of work impossible.

2010-present: The "scrounger" years:
I finally realise that I have to give up work and I start claiming ESA (out of work disability benefit).
My illness has continued to deteriorate as has my muscle related disability. I am now bedbound 95% of the time. I am continually ill along with periods of flares when things are even worse. So far I have had many more hospital admissions every year.
After seeing the erosion of the state support which had allowed me to go to university, do my PhD and get a job despite being ill and disabled, I start online disability campaigning as and when able to. DLA had bought my electric wheelchairs, ILF had allowed me to return to university, DSA helped me as a student, Access to Work helped me be a researcher. All of this has either gone or had cuts. This activism really takes off in 2012 with the Spartacus Report and Past Caring in particular.

From "Inspiration" to "Scrounger"

Yesterday I was admired by society and held up as a shining example others should follow (whether or not it was, in fact, possible for them to do so). Whether or not I wanted or deserved it, I was considered "inspirational" and a "positive example and role model". I was "breaking down stereotypes and barriers". (See previous posts for disablist comments from academics who didn't think "people like me" could do a "job like this").

Yet in the blink of an eye I turned into someone despised by society, someone suspected of being "lazy", being "irresponsible" and "not trying hard enough", someone told to "get a better attitude". In short, I've gone from "inspiration" to "scrounger".
I think this upsets people because it doesn't fit the correct "story". A disabled person is supposed to "overcome" their disability.  You're supposed to start out a scrounger and become an inspiration, not the other way round! If you become "inspirational" you're supposed to stay "inspirational".
I knew all along that I would eventually have to give up work. When people made nasty comments in my presence about disabled people who didn't work, I would point out that one day I too would be unable to do so. This made people very uncomfortable. Many simply refused to believe me. It just didn't fit the steterotypical narrative they wanted to believe in.

My own view is that although I am proud of some of the things I did (as anyone would be, disabled or not) I was not doing things to be "inspirational", but simply, like anyone else, because it is what I wanted to do (in fact I consider myself very lucky to have had the privilege to do a job I loved, if only for a limited time).

I think it is important to note that the fact I was able to do all these things was in part due to "luck" as much as anything else.
Had my illness started earlier, then I would have got sicker quicker and would never have worked at all.
Had I not received the support I did (social care, benefits, friends, family, employer), I would not have been able to work at all.
On the other hand, conversely, had my illness started later or even not at all, I would still be working today.

That is all there is to it. Nothing to do with character or willpower or attitude.
The same goes for every other sick and disabled person out there.
It is time to stop judging. We all deserve the same respect and support whether we are still working or not.

AGES: 19 ,  20,  22,  25, 31

Image is a purple background with butterflies and a caption "a lupie life". 
It shows 5 photos of the same woman of increasing age (19 to 31) from left to right. In the first she is jumping, in the second standing with a walking stick, in the third sitting in a manual wheelchair, in the fourth using a powerchair, and in the fifth lying reclining on a daybed. She is smiling throughout. 


A stark reading of how my illness has progressed is pretty grim. The problem is that a list of medical facts as above simply doesn't show the whole picture and is not representative of my true life. There is SO much more than just my illness. And thanks to that my life has been surprisingly good.

Obviously there have been some very dark moments and a need to adapt to my changing and worsening situation. With a progressive condition this can be difficult. No sooner have you got your head round one limitation then another comes along and slaps you in the face.
But overall I am and have been pretty happy throughout. Whether it be hobbies, friends or family, there is plenty in my life that is very good and most of the time it is more than enough to make the emotional difficulties which may sometimes arise from my illness take second place.