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.

[5zeds]

I think the visible/invisible split makes me feel very uncomfortable. I have a long history of going along with things and then realising ds has been parked neatly to one side of the group.. So I probably am over reacting and I post very rarely now so I think what fits today’s users is probably more important.

[NoHaudinMaWheest]

I think the division is not so much between invisible and visible disabilities as between ASD and everything else.
The current SN boards are definitely dominated by ASD but given how the term SN is usually understood and that Asd is probably the most common major disability in children that is not surprising.
Why not just have an ASD board and then boards for adult and children disability.?
People who post on the ASD can obviously post on the general disability boards too especially when (as is common) there are associated disabilities.

The number of current SN boards could usefully be reduced too. I think one that had legal, financial and benefits information all in place could be very helpful.
It could also be useful to have a general disability board dealing with the statutory aspects of education e.g. getting an EHCP or DSA as the same questions and information is given repeatedly but all over the place so that it is hard to find.

[soniamumsnet]

Thanks for all the suggestions so far - we'll take your comments on board.

[OneInEight]

The problem is there needs to be a threshold of posters to make any board viable. The more specific you make it the quieter the board becomes and the less people post on it and it becomes a negative feedback loop.

I probably should be posting on SN teens most of the time now as my ds's are 18 but hardly anyone seems to be there so it never seems worthwhile & to be honest I have less need than I did in that awful period when we knew something was wrong but not what to do about it.

Yes, the SN boards are dominated by ASC but if you separate these posters off is it just going to be an empty board???? And whilst some of the issues are different between different disabilities other issues are the same like the nightmare of applying for PIP so it does not necessarily make sense to separate these off.

[HosannainExcelSheets]

I think it would be really useful for parents of children with disabilities and for adults with disabilities too.

[UserAtRandom]

Yes, the SN boards are dominated by ASC but if you separate these posters off is it just going to be an empty board????

It might be that other posters who are currently deterred by the number of ASD posts (e.g. me) will feel able to post. At the moment I don't feel I can post because the things I'd want to post about are so different to the posts already on the board that I'd feel like a gate crasher. A bit like a parent of a pre-schooler posting about potty training on the Teenage board - they might get some answers, but they would be out of place.

[Ellie56]

Maybe there should just be two boards - a Disabilities Board as suggested, and a Special Educational Needs & Disabilities board for parents of children and young people with SEN and/or disabilities. (Not all children with SEN have a disability and not all children with a disability have SEN).

[tentosix]

Yes, the SN boards are dominated by ASC but if you separate these posters off is it just going to be an empty board

I don't see why? The whole point is that very few parents with disabled children post on the SN sites. Not because they are unwelcome, but because there just isn't traffic and other parents posting in a similar situation. By the time someone who may be able to advise toddles over to the SN Children site, that post has dropped off the end because the AS parents are post more frequently. I could advise on cerebral palsy, but very rarely go there despite all the knowledge i have built up over 12 years.

[5zeds]

I think it worked better and was more vibrant when there were less boards. But I also remember there were lots of different disabilities discussed and everyone clubbed together for a “natter” of the Friday night thread with a drink(the drink bit was probably not universal ). MNSN was an absolute rock in a storm for me and I think if we can provide that with a namechange it would be foolish not to. It is very dependent on people actively participating though. “Nobody posts so I don’t post” can’t work, I think you have to BE how you want it to be.

[SmaugMum]

Yes, please, from the parent of an early teen who is registered blind.

[whereonthestair]

I used to post on the cerebral palsy thread until it died out. I have never really thought that my DS has special needs and always found the language unhelpful including when he was tiny. My DS is disabled, those disabilities are predominantly physical.

Over the years I have looked and even posted on the mobility aids section but it was tumbleweed. SN does nothing for me. I would like to chat about lifts, COVID, wheelchairs, cars, trikes, education and also to get different perspectives. I am a mother of a disabled child, not disabled myself and as Ds gets older want to talk to adults about his perspective rather than speak for him.

Although there are many others in the same position this is not a site to find them. If disability helps connect people great but without it I defected elsewhere many years ago.

[HosannainExcelSheets]

Part of the problem with language is how you interpret it, though. My child had a disability, that disability leads to additional needs, some of those needs present at school, so are SEN.

I think SEN(D) covers any child or young person that needs adaptation in the school setting. It doesn't mean a learning difficulty necessarily.

As it happy, my child's disability is caused by autism and ADHD. But he's actually also very intelligent so he doesn't necessarily have special needs in the way I'm interpreting @whereonthestair to mean "special needs".

[5zeds]

I think SEN(D) covers any child or young person that needs adaptation in the school setting. It doesn't mean a learning difficulty necessarily.

This is how I read it though I do prefer plain old disabled, to me that include ASD and other neurological differences.

[SpottyOrange]

Adults with physical disabilities? Being a disabled mum...

[Merryweather80]

Fabulous idea. As a disabled parent there's very few places to chat or get advice on certain issues.

[Blowingagale]

For those with CP or parents of children with CP can I ask where you have found support (in addition/instead of MN)

[tentosix]

@Blowingagale Facebook have many pages, especial UK ones, with lots of help and support, as well as selling and advice on equipment pages. Most are closed groups so are not open to your private pages.

[tentosix]

DS is physically disabled and a wheelchair user. He is always referred to as disabled and no one has ever said he has special needs, even though he clearly has needs over and above non disabled children. I think we need a distinct section for children like him as well as other conditions, and especially adults with disabilities. They are a completely forgotten section.

[Fispi]

Great idea. Didnt there used to be a disabled parents board?

[5zeds]

I think there’s some deep rooted othering of invisible disabilities on this thread. You can’t be disabled without having additional needs (special needs). A lot of this reads as though people are ashamed to share the “disabled” descriptor with people with neurological disabilities

[Samcro]

@Blowingagale

For those with CP or parents of children with CP can I ask where you have found support (in addition/instead of MN)

apart from rl no where.
it has go worse no they are an adult and in a care home.

[CrispyMonster]

Definitely supportive of this idea!

[10brokengreenbottles]

Do posters who don't post on the SN section because posts about ASD are more prolific and posts about disabilities other than ASD fall down the page and get lost not read or post on any threads not in active? Do you never, for example, read/post on a thread at the bottom of page 1 of Chat or the top of page 2 of AIBU? Because as I posted the other day all the SN boards are quiet and only 2 have posts on enough threads in the last month to warrant them going on to a second page.

[tentosix]

@5zeds I'm sorry you feel that way, as there is no intention to 'other' any section. People just want a section that does address the needs they have managing physical disabilities because there is an enormous difference managing a wheelchair user child and a child with an ASD diagnosis. The current SN board is of very little use when it comes to a wheelchair user, as whereonthestair points out. I used to also post on the thread she mentions, and it would frequently slip down and get harder to find. Then disappeared altogether and there are now very few post relating to physical issues.

However much I agree we should all get support in the SN board the practicality is, we don't. With a physical disability board, it can cater for adults and children.

These categories sound good to me. I wouldn't bother with chat as it seems just replication as it's all chat really.

Children with disabilities
Teens and young adults with disabilities
Adults with disabilities
Wheelchairs and mobility aids
Legal/financial (disability)
Carers

[5zeds]

@tentosix the present board

www.mumsnet.com/Talk/special_needs_wheelchairs_and_mobility_aids

Gets so little use that they are talking about merging it. Thanks for saying you’re sorry and that the othering is unintentional.