UK Parliament Research Briefing: Invisible Disabilities in Education and Employment

"Disability occurs in many different forms. An invisible disability, or non-visible disability, is an impairment or health condition that is not immediately obvious. This POSTnote provides an overview of invisible disability in the UK. It outlines types of invisible disabilities and relevant legislation and policy. It also discusses the experiences of adults with invisible disabilities, and strategies aimed at increasing access and inclusion for adults with invisible disabilities, focusing on employment, and higher and further education."

https://post.parliament.uk/research-briefings/post-pn-0689/

Mentions Long Covid, doesn't mention ME but does mention "energy-limiting conditions (such as fibromyalgia)".

 

Just based on your write-up para here I think it is not good enough that ME/CFS isn't specifically focused on when apparently it is the most common reason for a child's education being interrupted or really......... needing special consideration, whether it is time out to get well and/or home schooling.

I can't think of an area that needed an ME/CFS specific bit more - given it is probably one of the things that affects our health and survival and access to anything in life the most - and misguided policies take away people's health and chances before they've even started.

Pretty insulting and shocking actually someone would approach the topic including 'education' and not specifically look at the 'highest prevalence' to make sure they'd covered the specifics - I would have in my day, though I know if they can get away with it you get some who don't do things properly and instead focus on the 'easy to sort'/easy cases. The upshot is that it isn't at all fitting of the issue at hand if not and that isn't fussiness or anything. It is just if you haven't blueprinted it through with the different severities of the most common illness then what have you done? the easy to do?

Which isn't really disability-focused or non-bigoted, just 'this is what we fancy offering, be grateful' the attitude of which I find stinky. Only simply issues allowed - and they'll define what simple is - because some with ME/CFS aren't asking for the moon it just doesn't fit into a slot of 'can't hear well' or one thing to fix for all.

To top it off the fact that those with ME/CFS had their support network actively undermined for decades by BPSModel stuff pushing families to reject or encourage harmful behaviour towards those with the condition, and a medical profession to do the same then for employment and education to think a name-check or understanding of the condition in the design of any adjustments says it all doesn't it about the non-world we are expected to exist in somehow.

We are different to LC - which seems to be also having the old ME/CFS research that was debunked for us rehashed for it - because we've had all our education and life affected and are about as vulnerable as you can get re: what others 'do' to us, but as strong and tough as you'll find just for being here and surviving. W might have done degrees with no adjustments and 60% of energy from anyone else, along with unkindness to boot because people aren't/weren't nice regarding any slip-ups so we also spent our life apologising and having to 'be better than' just to be accepted. We had to choose between keeping a job or getting a family so have no support network if bullied at work. Years of feeling vulnerable because no matter what our output was compared to less productive colleagues we were the ones who came in late or had sickdays that really were what made us sackable (hence the feeling we had to be most productive).

And that isn't 'our mental health to be sorted' it is abusive situations and understandable wariness and less support to be acknowledged and apologised for and taken into account (i does matter in a workplace where we've got nothing to fall back on support-wise so can get pushed around and used because ... we've got nothing else) - I'm sick of the sicko twisting of things. When do we get our day of being accepted just a little bit, a slice of rights and life and people admitting to what we've been chucked into so when we are 'wary' it is 'understandable' instead of anoher chance to infer we've 'got something in our heads' thanks very much.

To say without wanting to understand this it will be naive and flawed, because it forgets what happens if you leave such areas not covered bigotry does cause havoc without protections.

So I find the title offensive that they've pretended to include such disabilities and excluded us. And it is excluded if you don't get what we've been through and our unique needs, situations and talents. How dare they.

 

The full (pdf) report is worth reading: https://researchbriefings.files.parliament.uk/documents/POST-PN-0689/POST-PN-0689.pdf I'm sure it's not perfect and I'm very much out of touch with the focus of general disability advocacy but this looks like a positive development, I may have missed supportive positions but this seems to implicitly at least act as a complete abrogation of the Lord Freud era, for example the Social Model of Disability is quoted with approval:

"The social model of disability
The social model, developed by disabled people in the 1980s, is a way of understanding disability that explains how disability is created by barriers in society.36 In 2014, the Government Equalities Office endorsed this model. 37 Research indicates that many disabled people feel that they are still viewed as a ‘problem’ to be solved.12,38–4"

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The definition of disability seems sound:

"Definition of disability Under the Equality Act 2010
a person is disabled if they have a physical or mental impairment that has ‘substantial’ (more than trivial or minor) and ‘long term’ (12 months or greater) negative effects on their ability to do normal daily activities.31,42 This definition applies to many people with invisible disabilities. Some conditions may not be visible at the time of diagnosis, but may become more visible over time (‘progressive’), such as multiple sclerosis. Other conditions are more or less visible at different times or in different settings (‘recurrent’ or ‘fluctuating’).43

This definition applies to many people with invisible disabilities. Some conditions may not be visible at the time of diagnosis, but may become more visible over time (‘progressive’), such as multiple sclerosis. Other conditions are more or less visible at different times or in different settings (‘recurrent’ or ‘fluctuating’).4"

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The report does reference ME:

Assessment processes

"Assessments are required for disabled people to access financial support under Government schemes.67,68,73 People with conditions that fluctuate or do not have an objective diagnostic test, such as myalgic encephalomyelitis (ME), report that their impairments are less recognised in assessment processes.25,74–76 Concerns raised by stakeholders about the current assessment process include: impairments being assessed in isolation from each other; failure to assess impacts of cognitive fatigue and dysfunction; and, variability between different assessors.77–80"

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There's a lot more about work and education, which also seems generally good. Of course without the resources to make any of this real it is just another Government report but I'd file it under 'reasons to be optimistic'.

 

Landmark moment as Parliamentary report recognises energy limiting conditions.

"The Parliamentary Office of Science and Technology has published a seminal briefing on invisible disabilities in education and employment. Chronic Illness Inclusion contributed to the report which discusses the experience of adults with invisible disabilities.

It is estimated that 70-80% of disabilities are invisible and there are a wide range of impairments or conditions not necessarily visible to others.

Such conditions may include: mental health conditions; autism and other neurodivergences, cognitive impairments; hearing, vision and speech impairments; and energy-limiting conditions (such as fibromyalgia).

The briefing highlighted that lack of understanding and stigma from others creates consistent barriers to people with invisible disabilities. It commented that many of those with invisible disabilities are often unsure whether to disclose their disability, because they are worried about disbelief, stigma, and confidentiality."

https://chronicillnessinclusion.org...-report-recognises-energy-limited-conditions/