It’s been a week with lots of rest at Foggy HQ. I’ve had an additional muggle infection and the antibiotic treatment certainly took it out of me. This means I’ll be working this weekend. Stripy Lightbulb launches on 27th March and my deadline to get stuff done is looming! I’ve also had a number of meetings this week; it has been suggested to me that I am discriminating against a large percentage of M.E./C.F.S. patients by saying that they are unable to be in employment. I was mortified at the suggestion but it got me thinking about why a non-M.E./C.F.S. aware person would think that. That suggestion is the subject of this blog post.
For years, I have been saying that there is a disconnect between how different disabilities are perceived. During my ‘Visibility Today’ guest podcast session last year, I said that the wider general public is now so used to seeing disabled people fighting against all odds to reach the unreachable, that it must seem strange to simply be told ‘I can’t do that’. It is unfair that we are measured against other conditions but that is how it is. Or at least, how it is whilst M.E./C.F.S. remains a misunderstood and stigmatized disability.
We are used to seeing disabled people and/or parents of disabled children fighting for rights and policy changes to bring about greater equality and access for all. Many have fought for decades for disability rights to be applied in the workplace. This brings about the notion that every disabled person is able to work as long as they have the appropriate adjustments.
As I posted on Stripy’s LinkedIn page this week, that is simply not the case with M.E./C.F.S (Take a look at the M.E. Association’s Disability Scale on the LinkedIn post).
I would suggest that those with an M.E./C.F.S. severity of 30% and under would be able to be in employment (part-time/flexible hours). As a general rule of thumb, patients with severity of 40%-60% may be able to be self-employed, work from home, and set their own routine/hours but would be highly unlikely to be able to work fixed working hours.
No energy = no activity.
It’s not a choice and we can’t use mind over matter to overcome our lack of energy.
Employers could implement every disability appropriate adjustment going but it would still not alter the fact that there is a large percentage of M.E./C.F.S. patients who cannot work.
Remember, it’s not just physical energy that we have to consider. Cognitive energy and function play a huge role too. Even if we have a part-time job, with a flexible working pattern, are able to take regular rest breaks and are sitting at a desk throughout our shift, our brains and thought processes are still using valuable energy.
Am I discriminating against M.E./C.F.S. patients by saying that those with 40% severity and above cannot be employed? No (Many at 40% may be able to be self-employed and work a small number of hours from home- I know some of you -hello!). Is the person who is suggesting that every M.E./C.F.S. patient CAN work supporting positive discrimination? Yes.
What I am aiming to achieve with Stripy is to get employers to recognise and understand that any member of staff that is going through the lengthy diagnostic process will need support and that once they get their diagnosis, as long as they are 30% and under, they will need ‘adjustments’ to enable them to remain in employment. I see you. I see the many Foggy Followers who are struggling in employment at the moment because their boss/Occupational Health team simply don’t know what they are dealing with. I see those of you who know you are not coping with your current working pattern and are having to think about how you would cope financially if you had to give up work due to your health. I see the frightened comments about the possibility of having to go through the torturous PIP process. Those that can work, should be supported in work by those who have a duty of care over them.
I am 100% NOT saying that every M.E./C.F.S. patient can work. Many of our community can’t. That fact is the cause of desperation for many. Misconceptions and harmful suggestions that we can ‘push through’ make our situation much more difficult to manage.
and Foggy (OBVIOUSLY)