What's the point of the two new SN topics for adults with disabilities?

[inheritancetrack]

So following requests for a topic relating to adults and/or children with physical disabilities, we now have two new threads... mumsnetters with disabilities and mumsnetters with neuro diversity.

The requests from the original poster and contributors to that thread were specifically asking for a topic on physical disabilities relating to PIP, wheelchairs, employment adjustments and generally advice on living with the multitude of physical disabilities which affect people. These include illnesses causing physical disablement, like accidents, arthritis, multiple sclerosis etc, as well as long standing conditions like cerebral palsy. So this audience is large and generally ignored.

So what have we ended up with? Two topics which yet again are all about neuro diversity, ASD, ADHD, dyslexia and so on. 2 out of the first 28 posts (gave up counting then) are actually related to physical disability. Those 2 posts are lost in the other posts and have a couple or no replies.

On the original request post there was a lot of pushback from posters pointing out that autism was classed as a disability and therefore there need not be a distinction. No one denied it was a disability but the request was for support for physical disabilities, which are quite different, and which has just been ignored.

Honestly MN, adding the word 'physical' to the new disability topic does not make you discriminatory. It just clarifies and signposts the topic and stops people like me, with a physically disabled teenager, from feeling pushed out into the cold. A good opportunity to embrace true inclusion has been thrown away.

@Genealogy

I can't personally think of other unseen disabilities that wouldn't fall under the heading ND?

Epilepsy
Crohns / IBD
Acquired brain injury
Fibromyalgia

Those are just some that came to mind. I’ve no direct experience with any of them, but think they’d all be counted as invisible / hidden disabilities even where there’s a physical component. (Please correct me if I’m wrong about this - no desire to cause offence)

I do agree that there should be a board for physical disabilities if people want that, but I also think that a “general disability” section is useful, as there will be things that don’t neatly and / or discretely fit into another category.

But those are not neuro diverse conditions except in the broadest sense, in which case we are all neuro diverse because our brain governs everything from emotions to all physical functions and we are all different/diverse.

With respect those are illnesses. They fall under the heading of illness and as such require treatments and so on. Autism it is generally agreed is now becoming known under the heading neurodiversity and doesn't require treating, just recognising as a different way of viewing the world.

An autistic woman may have difficulties with social cues, but you wouldn't medicate this. An epileptic woman wouldn't be labelled neuro diverse because her brain showed abnormal electrical activity, she would take suitable medication to control an illness. Acquired brain injury may result in physical disabilities requiring a wheelchair or personality changes which won't. That wouldn't exclude them from either a neuro diverse topic or a physical disability topic. It would depend on their particular need.

You seem to be confusing 'hidden' with neuro diverse or using them interchangeably. In fact the word hidden is not useful in this discussion. We should stick with ND or physically disabled, especially as the term special needs is rapidly (and rightly imo) falling out of favour.

Eh? I’m not saying the ones I’ve listed are neuro diverse conditions. OP said she couldn’t think of any unseen disabilities that aren’t ND so I listed some things I thought counted as hidden disabilities that aren’t ND.

@Genealogy

Eh? I’m not saying the ones I’ve listed are neuro diverse conditions. OP said she couldn’t think of any unseen disabilities that aren’t ND so I listed some things I thought counted as hidden disabilities that aren’t ND.

It was meant to read 'would' fall under .... my fault. It gets very confusing when people are splitting hairs and not looking at the original post. Neuro diverse ,,, ASC ADHD etc. Physically disabled... wheelchair user, hemiplegia, cerebral palsy. Hidden but illnesses... epilepsy, chrohns. The last lot needn't be in the discussion as they are illnesses

@Genealogy

I can't personally think of other unseen disabilities that wouldn't fall under the heading ND?

Epilepsy
Crohns / IBD
Acquired brain injury
Fibromyalgia

Those are just some that came to mind. I’ve no direct experience with any of them, but think they’d all be counted as invisible / hidden disabilities even where there’s a physical component. (Please correct me if I’m wrong about this - no desire to cause offence)

I do agree that there should be a board for physical disabilities if people want that, but I also think that a “general disability” section is useful, as there will be things that don’t neatly and / or discretely fit into another category.

At least 2 of those are neurological.

Oh and some forms of mental illness are considered (by law, and by literally every disabled organisation on the planet) to be disabilities too.

There are zillions of chronic illnesses that are recognised as disabilities.

Besides where do you draw the line? Plenty of people use wheelchairs due to chronic illness. What benefit is there in differentiating between a wheelchair user who was paralysed in a car crash, and a wheelchair user with ME/CFS?

Are you saying wheelchair users in the latter category "shouldn't be part of the discussion" because their wheelchair need comes from an illness? Because that's dangerous ground.

What about people who only need to use a wheelchair sometimes? Or ambulatory wheelchair users, who already experience huge abuse despite making up more than 50% of wheelchair users.

@Graeae2022 Kindly don't tell me I don't know about disability. I live with it every day. Could you also point out where I say an illness which causes a physical disability should be excluded from the topic I proposed? I just said if they had an illness such as epilepsy they would find more help under the Health category but they could still post there. No one is excluded. It's just that we requested something specifically for physical disabilities as opposed to neurodiverse disabilities and have been ignored. Neurodiversity has been catered for but physical issues haven't. There is a specific topic for mental illness so I will ignore those comments It's not about defining disability it's about signposting more clearly where you can get help.

Not that I'm bothered any more as it's clear things won't change. In the coming months we will see whether the topic is used by people with many kinds of physical disabilities.

I'll not post further and am hiding this thread.

I'm sorry OP, but your comments are shockingly ableist and ignorant. Please educate yourself on what disability is!

This with bells on. It's very difficult to read the OP preaching their own definition of disability, and seeking to exclude and minimise the experience of others.

May be missing something already said but since the old board was filled with posters who're autistic, have Adhd, etc (as many people have said), why wasn't that board then left as the Neurodiversity board, then the new board would've been for the physical disability?

I agree with the OP there should be 'physical' added to the name anyway.

I agree with the OP there should be 'physical' added to the name anyway.

But by doing that and no longer having a board that encompasses all disabilities you are excluding some posters, because there are disabilities that don’t fall in to either a physical disability or a neurodiversity (there are some who don’t consider themselves to have a medical condition or mental health condition either). To be disabled, in the legal sense of the word, you don’t even need a diagnosis.

They can be illnesses, and still be disabilities. Why should they be excluded from posting on a disabilities board? If you are saying they can post on general health or mental health, by that logic posters with physical disabilities can post on general health or autoimmune (depending on the condition) since all conditions such as CP, muscular dystrophy, MS and RA are in the the ICD just the same.

Yes I get that. In that case, I then agree with a poster who says additional boards for both physical as well as general disabilities.

I just don't think any should overshadow the other, so if separate boards are necessary, then so be it so that people don't feel lost and unheard on one board.

Autist personally I think that would be fine, say if there was a ND board, a physical disabilities board and a disabilities board, although I know MNHQ may be concerned about the traffic to the boards as only last year did they merge several SN boards as they were so quite. But that isn’t what the OP is proposing. She is proposing just 2 boards - ”One should be for ND adults and one for adults with physical disabilities. Simple.” Which is exclusionary.

I understand. It is exclusionary, in that case.

I hope mnhq takes it into consideration.

@Imitatingdory You really should read the original post. No one is excluded
asking for a topic on physical disabilities relating to PIP, wheelchairs, employment adjustments and generally advice on living with the multitude of physical disabilities which affect people. These include illnesses causing physical disablement, like accidents, arthritis, multiple sclerosis etc, as well as long standing conditions like cerebral palsy. So this audience is large and generally ignored

Its simple. I don't believe we should call people with ASC, ADHD and different ways of perceiving the world 'disabled', more 'diverse', and their perspective should be valued. If they choose to use the term disabled, then thats fine, I just don't feel the rest of society has the right to label and 'other' people. Therefore the new topic has been agreed and looks successful.

However MNetters with disabilities is such a woolly term and concept, and doesn't signpost that it's for more physical disabilities. In fact I don't say just physical disabilities I also say 'physical issues'. There is absolutely no exclusion and I have literally no idea what you actual point is, except to split hairs and complicate a simple issue. I simply want a clear separation from neuro diversity and disabilities from all causes, most of which create a physical dimension to the persons life. So did many of the posters here until you decided to complicate the issue.

The only one I would exclude is mental health simply because it has a long running topic already assigned to it and covers a huge range of issues . ME/CFS, Crohns, Epilepsy, ABI, Fibromyalgia etc all have physical manifestations and can ask for advice/support on a 'physical disability' topic as much as they can ask for support in the health section. If they ask about a suitable wheelchair for ME they should get lots of experiences from a multitude of wheelchair users with multiple disabilities in a 'physical disabilities' topic. If they are going to ask about the latest treatment for ME they should ask in Health too as there are doctors and therapists there as well as people with ME, and would get a greater depth of support.

Yes, I made a mistake because I was tired and wrote wouldn't instead of would, but that shouldn't be a basis for a couple of people to derail the idea of this thread.

I have read all of your posts. I don’t need to re-read any. It was your post from 23rd 12.43pm that I quoted where you said you only wanted 2 boards - ”One should be for ND adults and one for adults with physical disabilities. Simple.” That is exclusionary whether you accept it or not.

In fact I don't say just physical disabilities I also say 'physical issues'.

Yet many of your posts, including your OP, do in fact say physical disabilities, 30 times in fact, Compared to you posting physical issues only 3 times.

However MNetters with disabilities is such a woolly term and concept, and doesn't signpost that it's for more physical disabilities.

That will be because at the moment the board isn’t solely aimed at those with physical disabilities.

As I said, I don’t object to having 3 boards - 1 for ND, 1 for physical disabilities, 1 for disabilities, but only adding physical to the current mumsnetters with disabilities board without another board is exclusionary. There are disabilities that don’t fall into ND or physical disabilities.

I don't believe we should call people with ASC, ADHD and different ways of perceiving the world 'disabled', more 'diverse', and their perspective should be valued.

I didn’t comment on the name of the ND board, but the law does consider autism to be a disability and many autistic people do consider themselves to be disabled. If others with autism don’t feel the same way they don’t have to post there, but those that do should be allowed to. However, being disabled and their perspective being valued aren’t mutually exclusive.

So did many of the posters here until you decided to complicate the issue.

I am not the only one on this thread who has posted similar.


@Imitatingdory I'm not engaging with you and your divisive posts.

I'm made my position clear I'll revisit the topic in 6 months in the hope it's been populated with questions about people who who need support for the physical aspects of their disability. No matter what their disability is.

Good morning.

We wanted to let you know we've been reading this thread carefully and making a note of all your feedback for discussion here at HQ.

To a certain extent, we've been waiting to see things settle down now we've got the new board up and running. But please don't feel ignored - we are listening to you and making a note of what's being called for.

You really do need to look up neurodiversity, it includes conditions such as Tourette’s, DCD/ dyspraxia, dyslexia, dysgraphia. Some definitions include things like learning disability, epilepsy and congenital conditions It doesn’t mean ‘seeing the world differently’.

@KimMumsnet

Good morning.

We wanted to let you know we've been reading this thread carefully and making a note of all your feedback for discussion here at HQ.

To a certain extent, we've been waiting to see things settle down now we've got the new board up and running. But please don't feel ignored - we are listening to you and making a note of what's being called for.

Many thanks. It's worth revisiting the topic in a few months to see if people understand that there is a something for physical issues which cause disabilities. Something with emotional support as well as practical advice

I don't believe we should call people with ASC, ADHD and different ways of perceiving the world 'disabled', more 'diverse', and their perspective should be valued

To be given a diagnosis of Autism, a person has to fulfil certain criteria.
"The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), which “limit and impair everyday functioning”.
Please note the limit and impair everyday functioning wording. Autism is a disability.

As for a physical disabilities board without input from the neurodiverse community, I can see your point inheritancetrack but I'm not sure how it would work in practise. Where does that leave the neurodiverse people who also have a wide range of physical co-morbid disabling conditions like the ones mentioned on the Neurodiverse Mumsnetters board titled "Co-morbid conditions? (Autoimmune, etc)"

ME/CFS, Crohns, Epilepsy, ABI, Fibromyalgia etc all have physical manifestations and can ask for advice/support on a 'physical disability' topic as much as they can ask for support in the health section. If they ask about a suitable wheelchair for ME they should get lots of experiences from a multitude of wheelchair users with multiple disabilities in a 'physical disabilities' topic

A lot of those conditions are also mentioned on the thread referenced above.

I don't know what the answer is, but perhaps it would help if MN could "steer" people whose posts would be more appropriate on the Mumsnetters with Disabilities board likewise all of the posts about neurodiversity on the main boards to the Neurodiverse Mumsnetters board, but as said upthread, that then attracts people who know little about the subject derailing threads.

I seem to have used a lot of words here to say I don't know what would work any better than what's already available.

If anyone else has any ideas please post

@BlankTimes I get what you are saying about autism being a disability, but the people who asked for the topic to be labelled 'neuro diversity' did so because those asking for this topic don't want to be called disabled. Most hold down jobs, marry, have children and are not obvious in a NT world, but because of the triad of symptoms they have a condition called autism. They don't want it called a disorder any longer, because they are not disordered they are neuro diverse. I understand what you are saying about it being a disability in many senses of the word, but neuro diversity is what was requested. I am just respecting their views.

I have asked for these the subjects of SN or neuro diversity not to appear in active as that attracts a lot of not very knowledgeable people. Can't see an objection to just physical disabilities though? May be a lot of good information in the general MN population and the subject matter shouldn't be sensitive?

It's quite simple with people with multiple issues. Just post in the section you think may have more advice for you.

At the moment we are having real issues with DS and his wheelchair and I really have no idea where best to post. he is 13 so not strictly a MNetter with a disability, but I'll try.

And if there were only 2 boards where would disabled posters who have neither a neurodiversity nor a physical disability post? Having 3 boards (1 ND, 1 physical disabilities, 1 more general disability) is different as it doesn’t exclude any posters, but having only 2 boards does.

The majority of MN’ers with autism may work, but that isn’t representative of the wider autistic community where only 22% of adults with autism are in employment. Source.

I would like to know why a recent long-running thread for deaf and hearing impaired MNetters has been stashed into General Health? Presumably for ‘traffic’? Many deaf people, signing or otherwise, will find the assumption that they have a ‘health problem’ insensitive at best. They are not necessarily unhealthy; they have a hidden disability with a considerable socially-defined element to it. I think they need their own section.

Just to say, I’ve just posted on/ bumped four threads in “Mumsnetters with disabilities”, (including one of my own about crutches that never got responses.)

It seems I’m the only person to post on the board since Friday 11th February. So three days.

Which must mean that the threads about ND have nearly all successfully migrated to the new board and that nobody much is using the “mumsnetters with disabilities” board.

Might be worth showing some support for it by using it?

@ThomasinaGallico

I would like to know why a recent long-running thread for deaf and hearing impaired MNetters has been stashed into General Health? Presumably for ‘traffic’? Many deaf people, signing or otherwise, will find the assumption that they have a ‘health problem’ insensitive at best. They are not necessarily unhealthy; they have a hidden disability with a considerable socially-defined element to it. I think they need their own section.

That’s a fair question.

Not everyone is aware of the politics of deafness and deaf identity. It might be worth posting an explanatory link here to catch everyone up.