Could we have a disability board?

[Hazelnut5]

I know there are loads of us on here with disabilities, but there’s currently nowhere obvious to post about it.

There are lots of threads scattered across the topics: issues like applying for PIP, grants, mobility scooters, working / parenting with a disability, where to buy incontinence pads, frustrations, etc etc. But without a clear place to post, the threads tend to get lost amongst all the other concerns. That also makes it very hard to build any kind of community among the disabled users.

There’s a special needs board but that seems to be used mainly for threads about autism and ADHD. It would never occur to me to look there for threads about disability.

Lots of people with disabilities really struggle in their lives and can feel very isolated when everyone else seems to be getting along fine in their able-bodied worlds. I think a disability board could really address our isolation and make a positive difference to our lives.

@Hazelnut5

Maybe legal/financial should just be called ‘Disability benefits’ so the signposting is really clear. It could be fantastically useful if we get it right and everyone can find it.

I like "legal/financial" for purely selfish reasons - I need to find some appropriate life insurance!

(if anyone has any recommendations?)

Also - it's probably a lot to ask, but I'll raise it anyway - is there any chance of some signposted info relating to disability?

(You know, on here...)

In all honesty I think there should be clearly defined different topics, like 'autism and learning disability' and 'physical disabilities '.

The SN boards also accommodate children with cerebral palsy, but any thread on this subject gets minimal traffic and quickly disappears off the pages, yet parents with CP children desperately need input, as do adults with a physical disability.

I know it sounds like I am advocating segregation but I am just pointing out the reality. Check the SN chat and SN children. Frankly I totally gave up posting there about my niece with CP and now rely on Facebook pages.

I would hate the board split up by disability especially visible/invisible. To me it’s exactly what we are trying to avoid. I do understand the frustration but the solution is to post more not segregation. (This is my opinion and I absolutely am not trying to stop anyone feeling the opposite).

I'm not knocking anyone's ideas, I'm trying hard to see how a split disabilities section would work in practise so please everyone do add observations and thoughts, we all need to present a good case to MNTowers for consideration and it would help them if they could see how one or more renamed or new boards could work for all disabled people.

I also want to raise awareness of the complexity of some disabilities and how they do not neatly fit into either of the two suggested categories. .

For example, what about someone with Dyspraxia/DCD?

Would they have to post in the 'Physical Disability' section for advice on balance, co-ordination, core strength support braces, suitable exercises regarding all the only physical elements of the condition, then have to post on the 'Autism and Learning Disability' board for help with trouble learning new skills, organization and planning problems, difficulty writing or using a keyboard, having a hard time with grooming and household chores.

What if the person with Dyspraxia/DCD needed help with learning how to put a new leg brace on, the leg brace is for a physical condition, but the 'how to' of putting it on independently isn't.
The one condition has both physical and neurological manifestations and it's not the only one by a long chalk.

Which board would someone post on for advice on severe anxiety?
Anxiety does not discriminate between disabilities, it can affect people with any type of disability and people with none.

Anxiety can manifest alone or alongside other conditions with very visible physically obvious and measurable disabling symptoms like rapid heartbeat, breathlessness, loss of feeling in the extremities, fear, panic and many more, yet its source is said to be psychological.

How about chronic pain or chronic fatigue/ME. Lots of medical advice lately seems to be suggesting the pain experienced by the patient isn't caused physically, so which board would host queries about that?

As I said above, please do post and state what type of Disability section you think would be best for all disabled people and their carers and appointees to use on MN.

I'd prefer mixed rather than separate. As - for me - it would work best.

For eg if I were to ask a question about public transport for myself; it would need to bear in mind my wheelchair, my physical issues that need the chair, my Aspergers, my continence needs, space for my children, and my need for a +1 who has requirements of her own too.

So I would need answers from various sections of people - as finding someone with the exact same needs is pretty unlikely!

It would be good to get some input from the people who are already using the SN boards regularly, as the influx of people with a much wider range of disabilities could be detrimental to them. Could someone put a message up there and invite them over? I’m not well enough just now to start another thread.

Yes I was thinking the same thing about “where do we fit”. Where would epilepsy go? What about Tourette’s?

I feel like I am the bad guy here because I do want a distinct separation for 'physical disabilities' and 'autism/LD/ADHD'.

I said earlier physical disabilities get ignored or soon get pushed down on the SN pages. I don't know why but they do. I have just looked at SN chat, SN children, SN teens and adults. of 150 posts there are 3 related to a physical disability... 2 of which have no replies.

There could certainly be a crossover when it comes to wheelchairs and buggies and with legal, but on a purely practical level physical disability is only really discussed in the health boards. Maybe it should be a subsection there and leave the SN board as it is? Like a childrens physical disability and an adults physical disability? Seems the easiest solution and one that finally can help parents and adults struggling to find help, practical and emotional?

@5zeds Epilepsy is physical, and tourettes is more a neurodisability than a physical disability.

There are plenty of children with cerebral palsy and autism who also have epilepsy, but to manage the epilepsy you don't need to know about managing meltdowns, ABA etc, you do need to know about keto diets, meds and safety. Its easy enough to have a foot in both camps. The is a post from a parent of a girl with epilepsy on the SN children page. It has no replies at all.

Tricky one, but yes, I think there should be more definition between the sections on SN.
My dd has a very complex syndrome with severe physical and learning disabilities, medical needs and social. I often look at the sn boards, but, even though there is a section on undiagnosed genetic conditions, I don’t feel like we fit anywhere, pretty much like the rest of life really. There are very few threads where I can link with other similar families, and so I drift away. There seems to be a lot of Autism support, which is right and great, I really hope it helps lots of people here, but complex needs, physical disabilities and learning disabilities that are not autism based are a bit left behind. I hope I haven’t caused any upset or offence- non intended. 🙂

I’m not sure epilepsy is “physical” and certainly in my experience (rather too much) behaviour is a huge area of concern. What I meant really was it isn’t obviously one thing or the other. I can’t see how separating will increase responses, that tends to be more about how often people check the boards. I don’t think anyone is a bad guy for wanting to split, but for me it’s not only impractical (we fit pretty much everywhere ) it’s not how I want things to be.

I said earlier physical disabilities get ignored or soon get pushed down on the SN pages. I don't know why but they do. I have just looked at SN chat, SN children, SN teens and adults. of 150 posts there are 3 related to a physical disability... 2 of which have no replies.

Isn’t that because parents of children with physical disabilities don’t recognise the SN pages as relating to them?

We been trying get a chronic pain board but it’s we see what happens. Not everyone who is in chronic pain sees themselves as Disabled but the term Disability is condition effects ability to function day to day.

I know as you can get old physically disabilities can cause more pain as body wears and tears come into play. It’s like we don’t exist on MN it’s funny really when it’s millions of people.

Great idea!

@Hazelnut5

It would be good to get some input from the people who are already using the SN boards regularly, as the influx of people with a much wider range of disabilities could be detrimental to them. Could someone put a message up there and invite them over? I’m not well enough just now to start another thread.

I've done that @Hazelnut5 on SN chat, SNteens and young adults and SNchildren.

"To all regular posters here, please have a look at this discussion and your comments will be welcome
www.mumsnet.com/Talk/site_stuff/4231947-Could-we-have-a-disability-board?pg=1"

@Hazelnut5

I said earlier physical disabilities get ignored or soon get pushed down on the SN pages. I don't know why but they do. I have just looked at SN chat, SN children, SN teens and adults. of 150 posts there are 3 related to a physical disability... 2 of which have no replies.

Isn’t that because parents of children with physical disabilities don’t recognise the SN pages as relating to them?

Absolutely not. Years ago there was one thread for children with cerebral palsy and it survived for quite a few months, with different parents asking questions about CP, so it was very useful, but eventually it too fizzled out. But it was one thread among 50 about ASD. People post there about CP, epilepsy, dyspraxia but there isn't really a home because there posts go unanswered or get lost quickly. It's because the autism posts are so prolific the physical disabilities get pushed down and lost. With a dedicated board those posts should stay longer and be helpful to other people. Even if it's only a subsection of health, I still think that would be an improvement.

Yes please.

In principle I like the idea of something like Hazelnut's list, but only if there is going to be more traffic on the renamed boards.

As it stands currently I think there are too many SN boards for the amount of traffic, some are incredibly quiet. Out of the 10 SN boards and the SEN board under Education:
4 of the boards have had less than 6 threads posted on in the last month.
5 of the boards have a page or less of threads that have been posted on in the last month.
And only 2 boards go on to a second page of threads that have been posted on within the last month.

I have a fairly newly (physically) disabled child, and have found it really hard to find and relevant threads on MN. I'm sure there must be plenty of other parents who have children with physical disabilities but other than the "wheelchair" section which looks like it's fallen into disuse, I found that the majority of threads in the SN boards related to ADHD or ASD and wasn't sure if it was ok for me to post there or if I was missing something. So I'd welcome a new section, or perhaps a better description for the existing ones?

@IWantChocolates

I'm partially deaf and works not consider myself to have special needs. I work in an SEN school so do see it more as pupils with SEN. I'd much prefer a form called 'Disabilities', as somewhere adults with disabilities can go to chat. I'd love to find other d/Deaf or hard of hearing adults to talk to.

I am deaf in one ear and partly hearing the other ear. I am really struggling because masks mean I can't lipread anymore. I would love to chat with you and other hearing impaired people.

@LilyMumsnet and @DawnMumsnet It would be great to have this new board especially if the chronic pain threads would be welcome there too.

Yes please as it will be really beneficial for those of us who are disabled and also for those who care for a disabled family member.

Yes please!

@thinkIamdone

In all honesty I think there should be clearly defined different topics, like 'autism and learning disability' and 'physical disabilities '.

The SN boards also accommodate children with cerebral palsy, but any thread on this subject gets minimal traffic and quickly disappears off the pages, yet parents with CP children desperately need input, as do adults with a physical disability.

I know it sounds like I am advocating segregation but I am just pointing out the reality. Check the SN chat and SN children. Frankly I totally gave up posting there about my niece with CP and now rely on Facebook pages.

sadly that is so true. I ended up the same. having a child with CP, I often felt that way.