Could we have a disability board?

Great idea!

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.

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.

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. 🙂

@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.

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?

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

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!

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 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).

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.

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...)

(if anyone has any recommendations?)

Yes please would love to swop ideas and chat to others with physical disabilities - not that I am excluding others!

As the partner of someone who has recently become disabled, I would find it very helpful to be able to talk to others in similar situations, and a sub-section of a board like this would be good. I think 'carers' is a bit limiting as a description as I don't consider myself his carer (yet) - maybe 'Families of disabled adults'?

I think it depends what you want to talk about in that subsection. Benefits particularly PIP, DLA, and UC are obviously important, but wills, power of attorney, budgeting for a different path through life, insurance, funds and bursaries, concessions, support to work, pensions etc are also of interest.
We’re sleepless here this week so apologies if my posts are a bit clipped.

I would find this really usefull too

I think “legal” is quite important.

@Hazelnut5 ‘s list is better. I think the benefits stuff is part of legal/financial, but perhaps that’s my misunderstanding? I have to say post 16/18 an hand hold through the mire would be very welcome.

I like your list Hazelnut.

Also agree with BlankTimes about the benefit stuff - perhaps a dedicated board would be useful.

I think the most important thing is that the whole board is easy to find and obvious that it is for both adults and children with all disabilities.