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AND THE ADVANTAGE
OF DECLARING A DISABILITY
A useful site defining hidden or "invisible" disability is on Wikipedia at:
Treating ME as a hidden disabilty
In advanced countries like those in EU, Canada, Australia, New Zealand and USA, under legislation protecting those with disabillities, your career prospects and financial situation will be legally protected if you:
treat ME as a hidden disability
declare to your employer that you have a hidden disability
understand your rights under disablity discrimination law.
Legal protection for disabled in the workplace
ME is a severe, hidden disability. Under the UK Disability Discrimination Act it qualifies under the definition of disability as "a condition that has a substantial effect on one's ability to carry out day-to-day activities that has lasted or is likely to last at least 12 months". If you have ME, you should consider applying for jobs using the "Two Ticks" symbol - to get an automatic interview. Many sufferers find this difficult to accept, rebel against the idea and cover up the condition, forfeiting the advantages of legal protection. In the past, this was quite understandable but now that ME cases are being fought and some are being won at tribunal (though only 18% of overall disability cases are won at Tribunal) this is a better approach, if you have a good GP and a good ME specialist behind you. Do not assume that if you declare a disability, this will ruin your career and future chances of promotion in the workplace. Employers are under a heavy legal "duty of care" towards disabled employees - but first read the Disability Discrimination Act (below). For more information about taking an Employment Tribunal Case against your employer on the ground opf having ME see the "Discussion" tab on the Home Page of this website (written by an unknown and anonymous correspondent in the UK who seems to have experienced such tribunals). My strong advice would be to resolve any disputes, if possible before taking any legal action, as only 18% of disability cases are won by applicants at UK Tribunal. Also the stress of taking a court action could make your ME much worse: it is very stressful and the employer side will easily find eminent medical evidence from ME "sceptics".
A Duty of Care on Employers for those with hidden physical and mental impairments
The UK Health and Safety at Work Act (1974)and The UK Disability Discrimination Act (1995)
(put in place by William Hague, as a Minister) place a very heavy responsibility (legally called a duty of care") on employers, public bodies, authorities and particularly government departments to look after their employees safety and health and to open up work opportunities for people with disabilities, through giving them automatic interviews for jobs (Two Ticks scheme) and by undertaking statutory workplace assessments to adapt their workstation to their disability/physical limitations in order to enable them to continue in work. In the case of ME this may mean your employer finding you another post, retraining you, modifying your current post, giving you a workplace assessment and a special chair, lowered or specialised lighting, a quieter location, facing away from noise and stress, protective screens, trackball mouse, flexible or non-standard hours etc.
For advice on heavy "Duty of Care" placed on employers under the UK Health and Safety at Work Act 1974 see:
For the full text of the
Disability Discrimination Act 1995
more details see
For the full text of the
Disability Discrimination Act 2005
To declare a disability to your employer, contact your human resources department and ask to speak to the Disability Officer about registering as a disabled member of staff. Their job is to organise assessments and to generally support you at work. You may be asked to see the company's medical adviser. You should be aware that the medical adviser is not entirely independent and may work for a private medical company. Their job, on behalf of your employer, will be to give an assessment of whether you are fit to work and adjustments that are required. You do not ahve to see a medical adviser to get adjustments however. Speak to your Union rep about this. If you do see the medical adviser, you should give permission for him/her to write you your own GP to a medical assssment - and they should take that advice. On any disagreements arising (e.g. your GP believes in ME but your company doctor does not) speak to your Union representative. The more ME/CFS specialists who can give an ME assessment, the better.
The Disability Equality Duty 2006
Across the EU, people with disabilities remain in the lowest income groups, less likely to benefit from double incomes (more likely to be single), less likely to be re-employed if made redundant. Only half of those with disabilities are in employment at all. The demography of the EU is changing, with an ageing population so more people in work will have disabilities.
The Disability Discrimination Act (The DDA 1995)
has only increased the employment levels of the disabled in the UK by 2%. So there is the need for a new Act which has a policy imperative on public bodies and departments.
The Disability Equality Duty 2006
places a heavier burden that the first Act on public bodies, authorities and particularly government departments to be proactive on behalf of opportunities for people with disabilities. It places a heavy duty on public bodies to
equality of opportunity for disabled people. It makes Government Ministers directly responsible for designing policies and services which promote the integration and opportunities of disabled people. It aims to:
- end the harassment of the disabled
- promote their equality in society
- create positive attitudes towards people with disabilities in the public arena
- encourage their full participation in public life.
The Disability Equality Duty
jobs must be advertised in order to proactively encourage disabled people to apply.
a) An awareness of disability must affect housing policies and target-setting.
b) If the needs and views of those with disabilities are not taken into account in public policy and decision-making, an individual disabled person (or the Disability Rights Commission) can seek judicial review (take them to court). This means that disabled people must be consulted on issues which affect them.
c) There is a new duty on the Secretary of State for Health, Constitutional Affairs, Culture, Media, Sport, Education and Skills, Environment, Trade and Industry, Transport and Pensions to publish a report every three years on the progress towards disability equality in their policy area/sector.
Under the Disability Equality Duty (2006),
victimisation by the State is outlawed whenever citizens come into contact with the public sector. It is also now illegal to have a blanket policy of dismissing someone who has more than a certain number of days illness a year (which is likely to affect disabled people disproportionately).
Under the Disability Equality Duty (2006) Act,
UK government departments must demonstrate that in their day-to-day dealings with people with disabilities:
- they are offering services
- that staff understand their responsibilities towards people with disabilities
- that people with disabilities are able to communicate effectively with Departments
- that complaints of disability discrimination are resolved effectively
- that people with disabilities are taking up services offered
- that people with disabilities are achieving the same outcomes as people who are non-disabled
- that people with disabilities are satisfied with the treatment they are receiving
- that services on offer are accessible enough e.g. websites etc.
The same duty applies to those with hidden disabilities like ME, mental illness, allergies, dyslexia, autism etc. An individual can take any public body or Department to judicial review. More information from the website of the Disability Rights Commission and from the
Office for Disability Issues
(the UK Minister for the Disabled is Anne McGuire MP).
Developing ME while in post
If you develop ME while in a post you should be aware that human resources units are trainined to issue warning letters after a certain period of sick leave. In some organisations, it is only two weeks' sick absence. So a quick diagnosis of ME will help, as well as:
identifying who your employer's
and make an appointment to see him/her
join a strong Union, if you can
c) help you to look into your employer's legal responsibilities under the Disability Discrimination Act (1995). These may include adjustments your work hours and conditions, a gradual return to work, a review your working patterns, temporary reduction of your hours, supervisory support, limited reallocation of duties, counselling support or termporary assistance with travel to work. Under ther new Equality Duty coming into force on 1 December 2006, you can apply for non-standard hours of work for ME or special leave for medical appointments.
d) using the 1995 Act to ask for (new) work which plays to your strengths or ask for training to accommodate your new disability
e) Keep a diary of every email, telephone conversation and a copy of all letters relating to your needs and working conditions in a sprung file. Keep another diary of your feelings and what is happening to you, for your own assessment (or it could be produced at a meeting to tell your employer how you feel).
f) challenge "trigger points" for disciplinary action for unsatisfactory attendance under the 2006 Act (ask for Union support in this if you can). Under the new Act, in public bodies it is illegal not to be flexible on trigger points on dismissal if someone has a disability.
If you must invoke the
Freedom of Information Act
to find out what is going on "behind the scenes", do so. Look at websites like the
Disability Rights Commission
. If you finally have to apply to an employment tribunal (see
), be aware that the damages (in the UK) against employers found guilty of serious disability discrimination are unlimited. See the website on bullying
if things get rough. But state your case and use the law to defend you - and your job. It is better to hang onto your job than almost anything else in ME (if you are physically able to do a day's work at all). It is your lifeline. Be aware that only 18% of disability cases are won at tribunal and that taking a case to law when you are ill may not be worth it, healthwise. A lawyer has told me "There is no such thing as justice". So make sure your case is watertight and that the employer's solicitors have a weak case. If you follow the correct steps laid out, if you have full documentary evidence, dates of actions and phone calls with notes of what was said, if you have not become aggressive, flouted discipline your case will be strengthened. Give no grounds for dismissal by your employer on any other issue than on disability discrimination. Consult your GP first on your chances of winning at tribunal and on the effects of a case on your health.
The UK Government now recognizes ME as a disability. Recent tribunal cases in the UK have mostly accepted the testimony of ME medical experts on whether someone has ME or not - but not in every case. An legal appeal may be necessary.
ME as a disability
Precisely how is one "disabled" in the workplace by ME? First, one can compare the mental symptoms to a stroke or brain injury e.g. brain fag, memory problems, word confusion. MRI brain scans sometimes show disseminated white specks or lesions. However, recent tests show that people with ME are not less accurate in outputs and thought processing, even though their information processing and reaction times are slowed. One American specialist has said that people with severe ME are very disabled and compares them with terminal cases of AIDS. Of course, there is an ME "sliding scale of severity" and some people with ME are able to work part or full-time. You may need special lighting (adjustable for different levels of energy and times of the day), a special mouse and screen or a quiet workstation away from movement and noise. You could wear a tennis visor (as I do) to block out nright lighting (if your empoyer is not obliging) and ask to listen on headphones to music to lower stress and cut out background noise (which mine allows). You may need to lie down at lunchtime, or work varied hours, or some of the week from home. See DDA 1995 and adjustments above.
Registering as disabled
If you are able to work or want to work, as I have said, it is very helpful to register yourself as having a disability. If you do this immediately, you will qualify under the law for workplace workplace adjustments (e.g. computer screens, trackball mice, lighting adjustments etc) that may enable you to stay in work with ME. But note that you do not have to declare a disability on an application form for a new job. Employers are not allowed to ask you in an interview whether you are disabled, but only if you are "fit to do the job" (and you assume that you would get adjustments to do it). Home working is particularly suited to people with ME (but they must get proper office chairs, screens and a mouse to protect them against RSI etc) .
Applying for jobs with ME
I would encourage people who can just about work with ME to do so. Work can create structure in your life and put you in contact with sympathetic colleagues. It will remove some of the financial hardship of ME. If you choose a good employer (go for a company with more than 20 employees who are obliged to comply with the Acts) and a job somewhat below your ability level in a larger organisation, you can then get promoted without moving to another organisation. Under the law, you are protected and the employer has a heavy legal duty of care. Some people think that if they take a case to an employment tribunal they will never get another job, either with the same employer or any other. But to dismiss someone (or refuse a reference to someone who has taken a case against them) would be illegal "victimisation". If you have never worked, you should apply for a job under the scheme that advertises a "Positive about Disability" symbol, which is intended to attract applications from those with disabilities. This will get you through the first sift and then at interview you can convince them that you are the right person for the job.
The workplace has changed over the last twenty years. There are new helpful technological advances: like
voice recognition programmes
that type as you speak.
enable you to speak face to face online. Computing can now break down many work barriers that have been hampering highly trained people with ME. ME sufferers should take advantage of all the advances on offer for people with disabilities. Contact disability employment advisors and register for a workplace assessment with a disability expert (or see a disability advisor to ask for a disability mentor). At work you are entitled to a
You should ask for a session with outside disability consultants to assess your working conditions.
Choosing the Right Employment and Employer
People with ME should not be afraid to apply for jobs which they think they could do, with a few adjustments. All applicants should ask themselves before applying is : "Do I have the skills the employer is looking for?". But I would strongly advise those with moderate ME look for jobs that are either part-time or below their ability level, when they are still recovering. A stressful job too early on will set back their recovery. I worked at lower levels (I was a senior secretary for some years) until I was sure that I had sufficient strength for more demanding representional roles. I did not return to teaching teenagers full time as it is too stressful and draining. Also ME/CFS is the leading reason for early retirement in the nursing and teaching professions.
Human Rights The Universal Declaration of Human Rights (UDHR) 1947 which no country in the world voted against, sets the background for the universal standards which underpin equal opportunities and respect for the rights of the disabled. UDHR was drawn up following the atrocities against disabled people during the Second World War. In addtion there is a new (and overdue) International Convention on the Rights of People with Disabilities (2006) see
(for the At A Glance UN Disability Treaty)
to ensure a sound basis for the development of international rights for disabled people. Domestic ratification takes the form of disability discrimination law which is advanced in the USA (which did not sign this UN Treaty on that basis) and is developing in the UK.
The key concept is the integration of the disabled into every aspect of life. The word that best reflects this objective is “
Protection against all forms of discrimination and creating a "level playing field"
As set out above in the UK, under the Disability Discrimination Act (DDA), it is unlawful for employers to discriminate against disabled people (and this now includes people with ME) for any reason related to their disability, in all aspects of employment, unless this can be justified. This includes: on application forms, at interview arrangements, in proficiency tests, on ·job offers, on terms of employment on promotion, transfer or training opportunities, on work-related benefits such as access to recreation or refreshment facilities and in dismissal or redundancy.
Under the DDA ‘reasonable workplace adjustments’ must be put in place by the employer to ensure that the employee has created a ‘
level playing field’
with other employees.
USA Legislation on Disability (which covers ME and CFS)
Under USA legislation: An individual with a disability is a person who:
has a physical or mental impairment that substantially limits one or more major life activities;
has a record of such an impairment; or
is regarded as having such an impairment.
A qualified employee or applicant with a disability is an individual who, with or without reasonable accommodation, can perform the essential functions of the job in question. Reasonable accommodation may include, but is not limited to:
making existing facilities used by employees readily accessible to and usable by persons with disabilities.
job restructuring, modifying work schedules, reassignment to a vacant position;
acquiring or modifying equipment or devices, adjusting or modifying examinations, training materials, or policies, and providing qualified readers or interpreters.
An employer is required to make a reasonable accommodation to the known disability of a qualified applicant or employee if it would not impose an "undue hardship" on the operation of the employer's business. Undue hardship is defined as an action requiring significant difficulty or expense, when considered in the light of factors such as an employer's size, financial resources, and the nature and structure of its operation.
In ME, it is probably best to work for an employer with a good track record in treating those with disabilities or one with clear policies on equal opportunities. You could find out in advance what their equal opportunity policies are. I have learnt in ME that what counts in the workplace is
how much you earn but:
good colleagues trained on disability and equal opportunities policies to promote full equality and intergration of people with disabilities
good, proactive policies on disability
a modern environment which can be "adjusted" easily adn modern computer equipment
good working terms and conditions (e.g. limited hours per week, moderate/low stress workplace).
In ME, be less interested in getting "the ideal job" (with a huge pay packet) and more interested in the conditions of the workplace and its disability policies. One soon learns in ME that what counts is primarily one's health and ability to do the job without becoming ill - and having supportive colleagues and a proactive and modern HR department.
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