UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

[Trish]

I have no problem with easy read documents being produced to enable more people with ME to take part in the consultation, but surely they should have had someone who understands ME checking it to ensure it's accurate.
I haven't got around to looking at the main consultation document yet. I hope it doesn't get PEM so wrong.

 

[Fainbrog]

To say that there was a sharp intake of breath seeing some of the images used in the easy read would be an understatement of monumental proportions.

 

[Robert 1973]

I think they should have had 2 extra documents:

1) A concise document which accurately summarised the contents of the main Delivery Plan document, without simplifying the language. This would be helpful for many people with ME/CFS (including me) who struggle to read large volumes of text.

2) A simplified version for people with learning difficulties or anyone else who finds it hard to understand the language used in the main document.

Both of these documents should have been produced in consultation with people who are knowledgeable about ME/CFS.


What they have produced is dreadful. It should be deleted with an apology. I hope one of the charities will raise this – or maybe the S4ME committee if they have the capacity.

 

[Amw66]

Some people with Learning Disability/Difficulty’s do have M.E, themselves or in family so representation and access important.


Some people with M.E have English as a lesser used language and might struggle to understand the language in default document. Some people have not been given access to full literacy. So LD guides may be of some use for very basic interpretation for theses groups of persons also.

some people with ME have english as a second ( or third or fourth) language - dosn't seem to be other language availabilities ( again )

 

[Ash]

some people with ME have english as a second ( or third or fourth) language - dosn't seem to be other language availabilities ( again )

Yes. That is because there has been decades of advocacy by and on behalf of people with Learning Disabilities. This is a rare success story.

Nothing good is ever offered up freely by the government so exclusion is the norm.

Advocacy by Deaf signers and blind Braille readers hit constant obstacles, and these populations suffer ongoing exclusion.

People who do not speak or read fluently in English are also excluded. There are campaigns to address this but as yet patchy progress at best. The hostile and racist attitudes towards immigrants makes it very difficult to advance here.

Unfortunately even after tremendous wins, people with LD are still dying at far higher rates than the general population due to dis/ableism
and eugenic practices and policies. In healthcare and beyond.

 

[Simbindi]

Some people with Learning Disability/Difficulty’s do have M.E, themselves or in family so representation and access important.


Some people with M.E have English as a lesser used language and might struggle to understand the language in default document. Some people have not been given access to full literacy. So LD guides may be of some use for very basic interpretation for theses groups of persons also.

I agree. But I think these groups aren't necessari1y covered by the Equa1ities Act (2010) and were definite1y exc1uded from the NHS Accessib1e Information Standard (2017). This is despite the fact that (for examp1e) dys1exia is a neuro1ogica1 condition and not the resu1t of poor 1iteracy per se. So producing an 'Easy Read' document is usua11y about fu11fi11ing statutory duties rather than providing appropriate support.

https://www.england.nhs.uk/about/eq...rks-and-information-standards/accessibleinfo/

https://www.disabilityjustice.org.uk/take-action/accessible-information-and-communication/

 

[Ash]

Oh yes I agree sorry if I was misleading.

I wrote from that angle because people seemed surprised and possibly upset to see pictures of people with LD in the easy read guide. And also to think there was some mistake over cognitive function.


I did not mean to suggest the government would ever do anything to intentionally help a group of people that they have been marginalising for all time.

 

[Ash]

I often read the easy read guides and they often have pictures of people with visible LD.

 

[Simbindi]

1) A concise document which accurately summarised the contents of the main Delivery Plan document, without simplifying the language. This would be helpful for many people with ME/CFS (including me) who struggle to read large volumes of text.

Rea11y this shou1d have been done under the NHS Accessib1e Information Standard (2017) as 'brainfog'/cognitive difficu1ties, p1us cognitive fatigue is a recognised symptom of ME/CFS and thus a very direct resu1t of disabi1ity.

 

[Ash]

Maybe they were hoping to avoid feedback?

I don’t think they gave us enough time to complete this with our limitations individual and collective.

 

[Simbindi]

I often read the easy read guides and they often have pictures of people with visible LD.

I found the autism ones rea11y good. I suspect they were done in consu1tation with some very inte11igent autistic se1f-advocates as we11 as those with 1earning disabi1ities (and to be frank, many c1assed as 1earning disab1ed are actua11y very smart peop1e in mu1tip1e ways).

 

[Daisymay]

some of these photos are dreadful

Absolutely appalling implying that PWME are overweight and unattractive looking people ! Yet the photos of doctors and researchers in the same document are of thin, good looking, intelligent looking people who you could trust!

 

[Ash]

I found the autism ones rea11y good. I suspect they were done in consu1tation with some very inte11igent autistic se1f-advocates as we11 as those with 1earning disabi1ities (and to be frank, many c1assed as 1earning disab1ed are actua11y very smart peop1e in mu1tip1e ways).

There is a public perception of people with LD that equates LD to the medical classification of old i**** m****. Or r***** or s*****.
These eugenic ideals have gone nowhere.


Overall I don’t think ‘intelligence’ is really concept that stands up to much scrutiny. I think how we use it now it means people have a collection of mental abilities that add up to something of value and praise worthy. It’s the dominant class that gets to decide what that is. And who it is that gets to access the knowledge necessary to convey and communicate these qualities to others.

People who have traditionally not been considered to share equal intelligence in western societies includes, various ethnic groups , virtually all people with visible disability or LD, all women. Many people with mental illness. People singled out and judged as less intelligent than others have then suffered abuse and deprivation and violent death at higher rates than others in society. With the supposed lack of intelligence on the part of the oppressed their victims given as justification for all this.

All the the members of the dominant classes have almost always considered themselves more intelligent than others and therefore more worthy of power and “naturally” entitled to exploit others. Virtually the entire working class with their inferior educational opportunities.

 

[Ash]

Absolutely appalling implying that PWME are overweight and unattractive looking people ! Yet the photos of doctors and researchers in the same document are of thin, good looking, intelligent looking people who you could trust!

I don’t think we need to throw fat people under the bus.

It’s also not okay to refer to people with Down syndrome as unattractive.

If we expect others to drop their own prejudices against us we probably aught to take a look at our own.

 

[Daisymay]

I don’t think we need to throw fat people under the bus.

It’s also not okay to refer to people with Down syndrome as unattractive.

If we expect others to drop their own prejudices against us we probably aught to take a look at our own.

I'm sorry, I can see how you interpreted what I wrote as me being prejudiced against overweight people but I'm not and wasn't meaning to convey that. I was merely ( but obviously not successfully) trying to say what many people will take away from that photo as society is programmed to look down on overweight people, just as so many in society are programmed to look down on us as being lazy scroungers etc etc.

 

[Lucibee]

The one helpful thing about the easy-read version (ERV) is that the summary is included in full in the survey doc itself. This seemed an improvement on the main survey, as you can't actually see what it is you are being asked to agree with. (They've helpfully summarised the problems and not the proposed solutions, as far as I remember).

I thought it might be helpful to produce my own "easy-read" version without the distracting images (in case anyone might find that useful), so I spent the morning extracting the text.
But, I've encountered problems.

There is a major issue with this document (and theirs). The survey questions and numbering system don't match the main survey doc. So it's really not clear how they will collate the two documents. They've also split the answers to the delivery plan sections in two, and not specified any word limits for the easy-read version.

Splitting in two makes sense: asking whether the issues are correctly defined, and then whether the proposed solutions are acceptable, makes sense, as it is possible to agree with one and not the other.

Also, are they really going to have someone transcribe all the written survey responses from these various documents that are sent in by post?

From the above responses, I'm guessing most of you are not happy with the wordings used in the ERV, but are the summaries broadly accurate and reflective of the main delivery plan?

 

[Ash]

I'm sorry, I can see how you interpreted what I wrote as me being prejudiced against overweight people but I'm not and wasn't meaning to convey that. I was merely ( but obviously not successfully) trying to say what many people will take away from that photo as society is programmed to look down on overweight people, just as so many in society are programmed to look down on us as being lazy scroungers etc etc.

I understand I’m sure people are worried that we were associated with LD because LD is also a group disrespected by society. Also fatter people.

The first thing to say would be that easy read guides usually have pictures of people with DS on them. So this will have been an automatic thing not specifically chosen.

I think stock pictures should represent a wider range of people including those without DS. And easier to read guides should include a more tailored approach to their audience so as to be most useful. But at the moment that isn’t how they work. So using LD people wasn’t an intentional misrepresentation. Not only because people with LD get ME too but mainly being this is standard approach.

We could challenge this without criticism of the appearance of people with certain LDs who for genetic reasons may have different facial expressions and or be fatter than others.

Also many people with ME are fatter than society expects them to be so agreeing with fatness as a sign of unattractive ness or lack of intelligence is not supportive within the community.

 

[Ash]

Ps I do think that separation of people with certain LD s is part of a segregation history, visible disability separation from non-visible, also separate from non-disabled people. So would welcome a more mixed image picture for all easy read guides because featuring only similar images is a stereotype for any group represented.

I agree having researchers all thin, approved of, in contrast is a deliberate choice. More fat researcher representation would solve two problems in one.

Pps If an organisation is going to take a photo of any individual and use it in public materials to represent this group the photo should show them at their best with decent lighting framing and composition, as far as possible. The government has the budget to pay for this. Representation only works if challenges negative stereotypes not reinforces them. Some of these photos referred to here don’t do that.

 

[Daisymay]

Representation only works if challenges negative stereotypes not reinforces them. Some of these photos referred to here don’t do that.

Spot on!

 

[NelliePledge]

Absolutely appalling implying that PWME are overweight and unattractive looking people ! Yet the photos of doctors and researchers in the same document are of thin, good looking, intelligent looking people who you could trust!

I don’t think we need to throw fat people under the bus.

It’s also not okay to refer to people with Down syndrome as unattractive.

If we expect others to drop their own prejudices against us we probably aught to take a look at our own.

hear hear. I’ve now had a chance to look at the pictures. The woman in the picture that appears to have offended some is a similar build to me. I think the images are intended to be easy to understand for the intended audience. The UK population includes people of all shapes and sizes so does the ME community.