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.

Well they’ve made changes, so they are listening. Keep talking to them.

Hopefully having the neurodiversity board will help a bit by gathering ND adults discussion together.

BTW, I’m mobility impaired and have Aspergers plus children with SN, (and have gained those ticks one by one ) so I can see the different POVs, here.

I think it’s hard for them to predict how boards will be used when they initially assign names to them, so this feedback and refine process seems slow but is sort of inevitable.

I really hope the new board gives peolple the support they need.

I do think a lot of the “adults with ND” traffic will migrate to the ND board given time - those who have found it are excited to have it - and hopefully then the other board will feel more usable to others. As I say, the neurodiversity board has only been created two days ago.

Sorry you feel unrepresented though @Samcro

@Imitatingdory

It’s a bit of a self fulfilling prophecy if posters don’t post somewhere because there aren’t many threads about e.g. CP. Perhaps if more posters posted there there would be more relevant posts and traffic.

But we do and the posts fall rapidly down the topic and end up with a couple or no answers at all. When you see that happen or look at the other posts and all you see are questions about autism related subjects then you just don't bother.

It's not because there isn't a need as the Facebook groups for physically disabled children and adults are very busy with lots of posts, but when you see your needs unrecognised you just don't bother. The 'SN children' is equally noticeable for its lack of physical disability questions.

Years ago there was a long running thread dedicated to cerebral palsy and on that I found huge support and made a rl friend who I think, saved the life of my DS with her recommendation. If I posted on there now about tube feeding I doubt there would be one reply. The thread did eventually peter out and was unfindable. I gave up, and I'm sure others did too and switched to FB.

That was the case in the children's SN and I've no doubt it's the same with 'MNetters with disabilities', formerly SN.

If as someone says, MNetters with SN (changed to disabilities) was already there and the original poster I referred to requested a topic specifically for issues relating to physical disabilities, why create a new topic about neurodiversity and change the name of the original topic to refer to simply disabilities when 'disabilities' isn't specific and had already been in long term use by adults with 'hidden'/social disabilities?

When I was a child the only disability was a visible disability, like a wheelchair user. Over the last 20 years there has been a huge (and valid) campaign to recognise people with 'hidden' disabilities, mainly autism spectrum conditions. It's been hugely successful to the point I feel physically disabled people are now having to pushback to be recognised. This certainly seems the case on Mumsnet judging by the topic labels. Different ways of thinking and different ways of moving are equal in their difficulties but one seems unacknowledged here, and their specific difficulties are as far apart from each other as they are from the neuro typical population.

@Beginit

Why is neurodiversity under special needs and not general health? Doesn't seem appropriate to me!

Because neurodiversity, autism and ADHD are not illnesses. Just a different way of seeing and reacting to the world as neuro typical people do. It's support that's needed, not cures.

@Imitatingdory Do you think that children and adults with a purely physical disability, like cerebral palsy, and children and adults with similar disabilities can all be lumped in together? Yes, we all fight for school provision and acceptance, but that's when the similarity ends.

My DS's needs are not those of a child with autism. An adult in a wheelchair has the same lack of understanding for autistic spectrum needs as the rest of the population, just like the rest of the population has no understanding of moving around with a wheelchair.

A neuro diverse person has no idea about tube feeding, tracheostomy care, managing good seating and accessible buildings etc etc. It's is a lazy assumption by the wider population and an expedient cost cutting scheme by government that the two types of disability are the same. They are equal but certainly not the same and they need different management strategies to help both communities.

Of course there are crossovers and that person could ask questions about LA grants to help with a wet room on one topic and ask about friendship issues on the other.

Frankly MN won't take any notice of this because people and parents with a physically disability/child just don't shout very loudly. I'll stick with Facebook.

@inheritancetrack agree 100%

There isn't a limit to how many topics we can have.
How does having an ND mumsnetters topic hurt you? We want to talk to each other about issues that affect us specifically because of our neurodiversity. To discuss neurodiversity without NTsplaining and whataboutery. Why on earth would anyone want that removed or resent it?

We were hassling MN for over 6 months for an ND topic. Nobody is stopping anyone from doing the same for a board that really matters to them. Do that instead of complaining about a topic that takes absolutely nothing away from you

Do you think that children and adults with a purely physical disability, like cerebral palsy, and children and adults with similar disabilities can all be lumped in together? Yes, we all fight for school provision and acceptance, but that's when the similarity ends.

No, I don’t and no where have I posted that! I also didn’t post a ND person and a physically disabled person have the same needs. However, what I did post is there are things that aren’t related to any specific disability - DLA/PIP/CA, LPA/Deputyship, DFG, bedroom tax exemption, council tax exemption, grants, EHCPs, social care assessments, jury service…

Although some ND people do understand enteral feeding. There are posters on MN (not me, mine are tube fed due to a LLI mixed with an ED) whose autistic DC are tube feed due to ARFID.

No threads on the SN boards rapidly fall down the page. None of the boards are busy enough for that, only 1 of the boards under the SN section has had enough posts in the last month to go on to more than 1 page. I don’t think a lack of replies is limited to threads about disabilities other than autism. For example, 34 of the threads on the first page of SN Chat have less than 10 posts, 20 of those have less than 5 posts. SN Children - 37 less than 10, 22 of those less than 5. On both boards that includes threads about ASD and on both boards there are threads with no answers including ones about ASD.

you just don’t bother is rather what I meant about a self fulfilling prophecy. If all the people who have posted similar posts over the last year actually posted on the SN section perhaps there would be more threads and replies about physical disabilities.

Also, I have previously asked this question on other threads in response to falling down the page/being lost in ASD threads statements but no one’s has replied. Do other posters never read or post on threads anywhere but active? Do posters never look at threads at the bottom of page 1 of Chat or the top of page 2 of AIBU?

If as someone says, MNetters with SN (changed to disabilities) was already there and the original poster I referred to requested a topic specifically for issues relating to physical disabilities, why create a new topic about neurodiversity and change the name of the original topic to refer to simply disabilities when 'disabilities' isn't specific and had already been in long term use by adults with 'hidden'/social disabilities?

Mumsnetters with SN was already there, I’m not just saying it, and you can see that it is that board that is renamed as the URL is still SN. The neurodiverse board came about from threads about the topic on here. You would have to ask MNHQ why they decided what they did.

I feel the need to say I come from a position similar to Thoosa, I have mobility difficulties, have an adult diagnosis of ASD and have DC with additional needs (ASD, LLI, mobility difficulties and MH difficulties). The child I most post about on the SN boards doesn’t have ASD.

I totally support a board that’s specifically for those with physical disabilities

It is good that there is a thread for those of us who are ND however I wish it wasn’t it “special needs”. Further reinforces the stereotype that we are defective rather than different. The ND Mumsnetters thread should be in chat IMO.

I think there’s a general view - in society, not just MN - that anyone who is not physically unimpaired or is not NT - needs to be acknowledged then subtly guided away from the “normals” so they can carry in without us.

It’s depressing how long it takes MNHQ to understand a problem and how much each group has to present their case before they are listened to. Shows how long the journey ahead to acceptance and understanding is.

Why can't Neurodiversity be in its own section under health? There's a wide range of topics. It doesn't need to be grouped with special needs ffs. And to the pp who said neurodiversity isn't an illness, I kmow that! Sub topics in Health are far from all illnesses.

Thank you also for the explanation @thoosa

@IncompleteSenten

There isn't a limit to how many topics we can have. How does having an ND mumsnetters topic hurt you? We want to talk to each other about issues that affect us specifically because of our neurodiversity. To discuss neurodiversity without NTsplaining and whataboutery. Why on earth would anyone want that removed or resent it?

We were hassling MN for over 6 months for an ND topic. Nobody is stopping anyone from doing the same for a board that really matters to them. Do that instead of complaining about a topic that takes absolutely nothing away from you

I don't want it removed. Where did I say that? I want that kept and to be for the neuro diverse community and for a topic specifically for physically disabled people (adults and children). I don't think your read my post?

I don't understand why they didn't migrate the posts of the (former) MNetters with SN to the new topic, and create one for the physically disabled community.

You must agree that the challenges are totally different? Yes, there are crossovers but they are still separate issues.

I don't understand why they didn't migrate the posts of the (former) MNetters with SN to the new topic

When MNHQ have previously made new boards they have done this, but relied on posters reporting the threads to highlight them, so perhaps that is the case here especially as some have been moved across.

The ND Mumsnetters thread should be in chat IMO.

ND mumsnetters is not a single thread but a board just like Chat so it can’t be in Chat. The equivalent of “Special Needs” for Chat is “Fun and Games”. Although there’s nothing stopping you starting a ND mumsnetters thread in Chat if you want to. BTW I am not passing judgement on the placement of the ND mumsnetters board under Special Needs, just pointing out why it can’t be in Chat.

@Imitatingdory

Yes I just saw that chat was in fun and games so I agree, not appropriate. But in “Other Stuff” you have Black Mumsnetters, Scotsnet, Craicnet etc so I think having ND Mumsnetter section there makes sense. Not in health, not in special needs.

[quote Scautish]@Imitatingdory

Yes I just saw that chat was in fun and games so I agree, not appropriate. But in “Other Stuff” you have Black Mumsnetters, Scotsnet, Craicnet etc so I think having ND Mumsnetter section there makes sense. Not in health, not in special needs.[/quote]
Maybe the special needs grouping needs a name change? The heading is going rapidly out of favour just like autistic spectrum disorder is now advocating getting rid of the disorder and replacing it with condition (ASC).

Absolutely not under health. It's not an illness that we look for 'cures' for.

Neurodiversity isn’t just a different way of seeing and re-acting to the world. Depending on which one you have there are real and measurable deficits in things such as memory and movement. DCD primarily affects physical functioning, not all ND is Autism!

Upthread Thoosa posted MNHQ posted on another thread the name of the section is going to be changed to Special Needs & Disability.

I got it from your title - "what's the point of it" plus the "two topics yet again about ND" bit.
It really sounded like you think they shouldn't be here to me.

Press MN for the topic you want and with any luck you'll get it added.

@BungleandGeorge

Neurodiversity isn’t just a different way of seeing and re-acting to the world. Depending on which one you have there are real and measurable deficits in things such as memory and movement. DCD primarily affects physical functioning, not all ND is Autism!

I'm not getting into the argument of defining ND as I did say quite clearly ASC, ADHD, dyslexia and so on and not autism. Please don't split hairs and derail the purpose of my post. Personally i would define dyspraxia as a movement disorder similar to cerebral palsy (which also is a spectrum) and as a physical disability rather than a NDiversity, as it affects aspects of daily living shared with physically disabled people, and doesn't affect how they perceive the world. As I've said a crossover can be helped by a physical and a ND topic if people have both conditions.

@Imitatingdory The main umbrella topic covering SN and disabilities isn't the issue, its the topic names which are not specific in covering physical difficulties as well as ND.

One should be for ND adults and one for adults with physical disabilities. Simple. As you see if you look at both of them there is very little about physical disabilities.

@IncompleteSenten Please don't misrepresent what I said and accuse me of discriminatory sentiment. There were two recent posts on MN site asking for a physical disability topic and neither of those topics represent purely physical issues. If there were requests for ND then they were obviously listened too.

You could say 'what is in a name' and say the 'disability' topic covers both, but the practicality is, it clearly doesn't. At least not at the moment.

I will come back to the two topics in a month and see if the people posting of the MN with disabilities who have ND issues migrate to the new topic and if people with physical disabilities begin posting there instead. I suspect most people like me have just given up and gone elsewhere for support.

@Beginit

Why is neurodiversity under special needs and not general health? Doesn't seem appropriate to me!

Neurodiverse people aren't necessarily unwell.

ND mumsnetters shouldn't be in health as a pp explained but it also shouldn't be in chat! We aren't there only chatting, we are discussing things that disable us, our mental health, how to get a diagnosis, self harm, co-morbidities, how we deal with grief etc
We aren't just having a laugh 🙄

OP, your post today at 11.02am was quoting Scautish who was discussing the overall topic name where the boards are, not the individual boards’ names, so when you posted ”Maybe the special needs grouping needs a name change?” I presumed you meant the topic heading name. Hence me saying the SN topic is going to be renamed.

If people don’t post there of course nothing is going to change and there will continue to be few threads, it’s a self fulfilling prophecy. If more people posted there there is likely to be more traffic, more threads, more replies. Just because there are ND threads doesn’t stop you or others posting threads about physical disabilities.

And if you want a board for ND posters and a board for physical disability where does that leave those that don’t fall into either camp, but do have a disability?

@ofwarren

ND mumsnetters shouldn't be in health as a pp explained but it also shouldn't be in chat! We aren't there only chatting, we are discussing things that disable us, our mental health, how to get a diagnosis, self harm, co-morbidities, how we deal with grief etc We aren't just having a laugh 🙄

I’m not very good at interpret emoji’s but I get the impression your response is quite aggressive/dismissive. Please take a little more time to understand what I am saying.

I’ve already explained that I didn’t realise chat was in “fun and games”. I imagined the the thread sitting alongside black Mumsnetters and other topics such as Scotsnet.

Of course I know that we go through significant adverse issues in life. I’m constantly on anti-anxiety and anti depresssmt medication (and have been for past 25 years). I need medication to sleep. I have been suicidal many times. I have been excluded from friendship groups all my life, I am treated differently at work, I feel so fucking different every fucking day. But I put a lot of that down to having to shoehorn myself into an NT designed and dominated world and being excluded/blamed/told off when I don’t get it right. And a lot of that is because we are just not understood at all. There is a HUGE problem on here that is not recognised.

So yes we need threads to discuss significant MH and other issues, but I’d also like us to be properly recognised as a valid part of society, and that could be facilitated by discussions where we discuss our experiences. Where NTs can maybe develop a little empathy towards and realise different doesn’t need to mean wrong. If there are threads where we do discuss our different takes, or how we respond to events in different ways (eg my silence doesn’t mean I don’t seem, it means I’m completely overwhelmed and desperately trying to find the suitable response acceptable to NTs that I have stored in my brain library somewhere as I don’t want to upset you). That I feel so much but can’t describe it, that I want to have friends, for to care about me but also to recognise that I struggle when it’s more than a 1-2-1 situation. I wish all
These things were understood more and I think a thread that’s not just under “special needs” would be instrumental in changing this.

But you have really upset me with your uppity response and unnecessary emojis.