Speaking from personal experience, on dozens of occasions, as soon as I mentioned to an interviewer that I would need to lie down during the day and/or occasionally work from home, the interview ended; there were healthier applicants who would not need those accommodations, and despite my qualifications and experience, I was no longer the best candidate for the job. The only way for a disabled person to get a job is to go through State VocRehab, which deals with employers who have previously been willing to accommodate the disabled. Unfortunately, State VocRehab requires that your health be sufficiently stable to commit to a set work schedule, and will not waste their time trying to place a patient who cannot predict when they will feel well enough to work.
As much as I want to work, I simply cannot find anyone willing to hire me because my symptoms are too severe. I can’t hide them during a job interview, and they’re asked about. I also can’t work enough hours to be employable without making myself sicker – 12 hours in one week landed me back in bed, and it was a month before I got back to baseline. There’s simply no point in working more hours if that makes me sicker and unable to work.
It is easy for those who "see" me only through my writings to convince themselves that I need only a little push to be able to work successfully, but a former State VocRehab counselor who has seen me in person says otherwise: State VocRehab would tell me to go home and get well because they couldn’t place me in my current condition. The SSDI VocRehab experts are unanimous that I cannot work; the judge may imagine that there’s a job somewhere that I could do, but the Ph.D.s say no such job exists and have the statistics to prove it. One was quite clear that fewer than 1% of paralegal jobs in California are part-time, and there are essentially none that are less than half-time; the doctor was theorizing I could work 12-15 hours, but from experience, I knew that was too much – either way, it was a lot fewer hours than would be required to make me employable, and I make significantly more per hour freelancing than I would as a part-time employee.
From your vantage point as a reader, you don’t see that I do most of my writing lying down, and some with my eyes closed (thankfully, I’m a touch-typist); you simply imagine that I use my computer sitting at a desk as you do. And you don’t see that sometimes it takes days (or even weeks) for severely-affectedCFS patients to write something, with substantial editing by other people who can guess at what word was meant when the author wrote [thing] in the middle of a sentence, before it’s actually put out for the public. There’s no employer who would accept that amount of lag time between an assignment and a finished product.
Come to my house and observe me, rather than pre-judging based on your notion of what CFS is, and you’ll change your mind about my ability to hold down a real job without getting fired for not meeting the employer’s standards for attendance, appearance and productivity.
* * *
ENDNOTES:
[1] Panorama: Britain on the Sick. BBC 1. Screened on Monday 19 May 2008. The programme covered what was portrayed as New Labour's 'Pathway to Work' programme when in reality the chief policy architect is Unum Provident: with the policy being facilitated by Labour's 2007 Welfare Reform Act. The BBC programme was conspicuous by the relative lack of expert voices questioning the Government's policy. See: http://news.bbc.co.uk/1/hi/programmes/panorama/7409927.stm
[2] Contrary to much popular belief, monetarist economic policies were first adopted in the UK by Labour Chancellor Dennis Healey. They were subsequently taken to such extremes by the Thatcher government that they were even condemned by former Tory PM Edward Heath - as well as the said US Monetarist architect Milton Friedman. The results were the widely held needless decimation of a large proportion of British manufacturing industry, poor export performance and ultimately a major crash in sterling, along with mass unemployment (in excess of 4 million and which cost the exchequer the equivalent of a decade's North Sea oil revenues ) and community breakdown that is still reverberating to this day.
[3] See for example the New Statesman article by Professor Ravetz of Leeds Metropolitan University on 1 May 2008 entitled: Is Labour Abolishing Illness? Viewable online at: http://www.newstatesman.com/200805010024
[4] David Freud: Interviewed on the BBC Radio 4 'PM' programme on February 2nd 2008. See: http://news.bbc.co.uk/go/pr/fr/-/1/hi/uk_politics/7223687.stm http://news.bbc.co.uk/1/hi/uk_politics/7223687.stm
[5] CBT (Cognitive Behavioural Therapy) is far from recognised as the panacea it is made out to be and there is much evidence and professional opinion that person-centred counselling is a superior mechanism for addressing long-term emotional and social problems. Such factors are discussed for example in the paper entitled: Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment on Section 3 of: The diagnosis, treatment and management of chronic fatigue syndrome (CFS)/(ME) in adults and children, Work to support the NICE Guidelines... Anne-Marie Bagnall, et al, Centre for Reviews and Dissemination, University of York. 2005. Professor Malcolm Hooper & Horace Reid, January 2006. From: www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html
[6] See for example the New Statesman article (op cit) by Professor Ravetz of Leeds Metropolitan University on 1 May 2008 entitled: Is Labour Abolishing Illness? Viewable online at: http://www.newstatesman.com/200805010024
[7] See the New Statesman article by Professor Ravetz of Leeds Metropolitan University on 1 May 2008 entitled: Is Labour Abolishing Illness? Viewable online at: http://www.newstatesman.com/200805010024
[8] See: M.E. (Myalgic Encephalomyelitis) BASIC INFORMATION. Anglia ME Action. April 2008. At: http://www.meactionuk.org.uk/ME_BASIC_INFORMATION_-_Anglia_ME_Action_-_April_2008.htm http://www.meactionuk.org.uk/ME_BASIC_INFORMATION_-_Anglia_ME_Action_-_April_2008.pdf
Also see: What is ME? What is CFS? Information for Clinicians and Lawyers. www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm
[9] See: CORPORATE COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. A MUST READ document available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm
And see: QUOTABLE QUOTES ABOUT ME/CFS. Compiled by Margaret Williams on behalf of the charity Invest in ME. Available online at: http://www.investinme.org/IIME%20ME%20Quotes%20Order%20form.htm
[10] Page 9 of the joint Commons/Lords Gibson Parliamentary Inquiry Group (GSRME) Report into ME/CFS: www.erythos.com/gibsonenquiry/index.html
[11] Page 31 of the joint Commons/Lords Gibson Parliamentary Inquiry Group (GSRME) Report into ME/CFS: www.erythos.com/gibsonenquiry/index.html
[12] Page 33 of the joint Commons/Lords Gibson Parliamentary Inquiry Group (GSRME) Report into ME/CFS: www.erythos.com/gibsonenquiry/index.html
[13] Page 33 of the joint Commons/Lords Gibson Parliamentary Inquiry Group (GSRME) Report into ME/CFS: www.erythos.com/gibsonenquiry/index.html
[14] Page 33 of the joint Commons/Lords Gibson Parliamentary Inquiry Group (GSRME) Report into ME/CFS: www.erythos.com/gibsonenquiry/index.html
[15] Page 30 of the joint Commons/Lords Gibson Parliamentary Inquiry Group (GSRME) Report into ME/CFS: www.erythos.com/gibsonenquiry/index.html
[16] Page 30 of the joint Commons/Lords Gibson Parliamentary Inquiry Group (GSRME) Report into ME/CFS: www.erythos.com/gibsonenquiry/index.html
[17] See: CORPORATE COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. A MUST READ document available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm
See: Proof Positive? Evidence of the deliberate creation via social constructionism of "psychosocial" illness by cult indoctrination of State agencies, and the impact of this on social and welfare policy. Eileen Marshall, Margaret Williams 30th August 2005. At: www.meactionuk.org.uk/PROOF_POSITIVE.htm
See: Concerns About Commercial Conflict of Interest Underlying the DWP Handbook Entry on ME/CFS. Hooper, Marshall & Williams. www.meactionuk.org.uk/HOOPER_CONCERNS_ABOUT_A_COMMERCIAL_CONFLICT_OF_INTEREST.htm
See: Wessely, Woodstock and Warfare? Margaret Williams. 9th August 2007. At: www.meactionuk.org.uk/Wessely_Woodstock_and_Warfare.htm
See: QUOTABLE QUOTES ABOUT ME/CFS. Compiled by Margaret Williams on behalf of the charity Invest in ME. Available online at: http://www.investinme.org/IIME%20ME%20Quotes%20Order%20form.htm
[18] Seumas Milne. Only Dogma and Corporate Capture can Explain This. Thursday October 18, 2007. The Guardian Newspaper. Available online at: http://www.guardian.co.uk/commentisfree/story/0,,2193518,00.html
[19] Sir Menzies Campbell. BBC Radio 4 Today programme on 3rd July 2007.
[20] See CORPORATE COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. Document available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm
And also see: The Mental Health Movement: Persecution of Patients? A Consideration of the Role of Professor Simon Wessely and Other Members of the "Wessely School" in the Perception of Myalgic Encephalomyelitis (ME) in the UK. Background Briefing for the House of Commons Select Health Committee. Professor Malcolm Hooper. At: www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm
And see: QUOTABLE QUOTES ABOUT ME/CFS. Compiled by Margaret Williams on behalf of the charity Invest in ME. Available online at: http://www.investinme.org/IIME%20ME%20Quotes%20Order%20form.htm
[21] Myalgic Encephalomyelitis or M.E. (myalgic= muscle-pain, encephalo= brain, myelitis= spinal-cord, encephalomyelitis= inflammation of brain & spinal-cord) is a long-term organic/biomedical illness and is NOT the same thing as 'Chronic Fatigue', short-term post viral syndrome or 'myalgic encephalopathy' and it is NOT a psychiatric or behavioral illness. ME has been in the medical literature since the 1930s and classed as a physical disease by the WHO (World Health Organisation) International Classification of Diseases (ICD) since 1969 - currently listed at WHO ICD-10-G93.3 as a Multi-System organic/physical NEUROLOGICAL Disorder with similarities to Multiple-Sclerosis and Post-Polio-Syndrome. Documented clinical/research abnormalitie include: immune system/infectious; cardiovascular, endocrine and digestive systems; muscle, cellular, mitochondrial and genetic function and integrity; oxidative stress; central nervous system - including brain and spinal cord; end organs. See: http://meactionuk.org.uk/G93-3-ICD-10-compilation.jpg http://meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg www.who.int/classifications/icd/en/
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