Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Who defines disability?

25 replies

lougle · 09/12/2013 19:26

Partly following on from this thread in SN Chat but also because of an experience I had today, I'm wondering about it.

Today, I took the girls to their swimming lessons. They had all passed awards. DDs 2&3 were awarded 'Octopus 2' and 'Octopus 1' respectively. DD1 got awarded 'Rockhopper 3'.

I'm new to the swimming world and didn't know the significance of the series. So, with my perception that right now, DD1 is the better swimmer of the three (she's been swimming fortnightly for 3 years, DDs 2&3 only started in August), I asked what the significance of 'Penguin series/Octopus' and 'Rockhopper' were.

The instructor (who, incidentally, has a disability) sort of coughed, spluttered, blushed and warbled randomly about instructors making decisions based on what they thought the child might prefer Confused

It suddenly dawned on me that she was uncomfortable and I said 'Ohhhh do you mean because DD1 is disabled??' and she, looking relieved said 'yes, but I was trying to be.....some parents don't like....it's sometimes hard....'

I interjected with 'Oh don't worry, I'm there with the disabled thing. She's been disabled for a while now and well, she'll be disabled for....ever....so really, it's fine.'

She went on to say that there were children who she teaches who she would regard as 'disabled' but whose parents don't/aren't happy with the concept.

It got me thinking. We all know the legal definition of disability and most of our children would tick that box, legally. But is a person 'disabled' whether they accept the term or not, or do they only become 'disabled' once they/their parents accept the term for themselves? Can you have, say, ASD and not be 'disabled'? Can you have a 'squiffy brain' Wink and all that goes with it, but still not be 'disabled' because you don't identify as such??

OP posts:
StarlightMcKenzie · 09/12/2013 19:38

I dunno. I've thought about this before and I think that 'disabled' is the word of the user rather than the recipient iyswim and it is a very bendable term as it applies more in some situations than others.

lougle · 09/12/2013 19:43

It's such a strange word. I mean, DD1 has a 1:1 at swimming, she goes to special school (which they know about), she has an obvious SNness about her, but the woman couldn't bring herself to use the word 'disabled' Confused

OP posts:
StarlightMcKenzie · 09/12/2013 19:45

Could it be the climate?

You know. Those state drains etc.?

lougle · 09/12/2013 19:57

Hahaha, possibly.

OP posts:
magso · 09/12/2013 20:22

I did not think of ds (who is physically reasonably able but has ASD, SevLD and ADHD) as disabled until he was 9 (when he got his DLA). I knew long before that that he would always need support but thought of him as having delays and special needs. Perhaps it is a terminology thing, along with the uncertainty that comes with developing children - after all we hear 'he will catch up - get there in his own time - just needs to understand the word 'no'etc.
I know several successful academics who might well be on the spectrum (but of course I am only guessing) but I don't think of them as disabled. So I don't know where you draw the line.

PolterGoose · 09/12/2013 21:56

This reply has been deleted

Message withdrawn at poster's request.

bialystockandbloom · 09/12/2013 21:59

Hmm, interesting. I suppose in some ways disability can be described as being unable to participate in normal, mainstream life (whether one aspect of it or multiple aspects). In SEN terms I guess it's 'barriers to learning' but that obviously also applies to the social context too. My ds's ASD doesn't result in many barriers to academic learning (though this might change as the work becomes more reliant on language/abstract concepts), but affects him socially in many ways.

WildAndWoolly · 09/12/2013 22:03

I've thought about this a bit too. Both my DSs have ASD so are classified as disabled, but are academically able (likely to go to Uni) and in a mainstream school. They are both different from the norm, but does that make them disabled? The word itself is quite strange in that implies something that doesn't work, but most of the kids I know with disabilities do fine, just in a slightly different way.

Not sure if the word itself is fit for purpose tbh, we need a new one!

lougle · 09/12/2013 22:34

I suppose I view DD1 as 'disabled' because apart from the obvious physical, speech and language, etc., there are bits that seem 'missing' in her that I can't imagine developing enough to live completely independently as an adult. Relatively 'little' things, but essential. e.g. her complete love of people - she has no inhibition with people. She just doesn't have it in her, and I'm not sure that she's any different now than she was at 2 in that respect, while she's changed hugely in other areas.

OP posts:
zzzzz · 09/12/2013 23:05

This reply has been deleted

Message withdrawn at poster's request.

bochead · 09/12/2013 23:31

No I just regards DS as "wired differently". I don't see him as disabled. It breaks my heart that without the right help he will remain completely maladapted to the modern Western world though.

He is disabled when dealing with paperwork for "The Man", but not in and of himself. Tony Attwood said the same thing in his book about Aspbergers. In a different historical period/environmental setting he would be at a considerable daily adaptive advantage to some of his peers who are thriving in a mainstream 2013 setting.

Reading/writing wasn't half as important as the ability to forage for wild foods for serfs during the medieval age. His affinity with animals means he might have made a fantastic hunter/trapper/ horse trainer in the right era.

Schools in their current format have only been around for a century or two. He'd have done just fine in the one room village school house his Granny attended where everyone had to work in silence at their own desk, rules & social hierarchy were very clear, the walls were not covered in visual distractions etc, etc.

A rural dweller of the 17th century would have been horrified with life in a modern big city, and not many of us could cope if we were transported back to then either. he wouldn't have had to contend with such complicated clothing etc every morning either.

DS isn't disabled when he's in his room with noone bothering him, add other people into the mix and it all goes wrong lol!

If you consider that 1% of the population is schizophrenic, 1-5% has add/adhd, 1% suffers from bi-polar, 1-5% is dyspraxic, up to 5% dyslexic, 1% are of genius level intellect, 1% are true pyschopaths, etc, etc then you start to wonder who is left that can be considered "normal"!

Especially when you then take into account all the secondary mood disorders that will at some point affect 25% of the population over the course of their lifetime, the huge range of physical disabilities from arthritis to cerebal palsy and the fact that being old is, in and of itself a disability when compared to the general population.

Using the ASD spectrum as one example of variance from the norm - how many of these children could endure life on a lonely mountainside as a shepherd while other more gregarious NT types could not? How many would be happy being left to solve a technical problem such inventing a new tool for a specific task if left for the days they would need to ponder the problem through properly?

Those hyper-senses would enable my non-sleeping DS to identify the approach of a predator, and his response time would mean he would be up, gone and hiding 3 miles away on the other side of the mountain while his "NT" peers were providing a lovely lunch for that sabre toothed tiger, wolf pack or bear.Grin. Now too many people are being considered surplus to requirements yet I doubt mankind could have conquered as many physical environments through the ages if he confirmed to as rigid a model of physicality and mental development as is expected in today's society.

In the third world lifetime outcomes are often better despite the lack of therapy because the communities around our children focus on what they CAN do, rather than what they can't in order to equip them for being able to be to contributors to their families as adults.

I'm not denying my son is different or that he has problems. I just see disability increasingly as being more about social constructs than individual capabilities. In previous times, before the big city industrial welfare model every person in a village had some part to play in the productivity of the whole community, even the most humble and fragile.

I dream of an education system that learns to embrace and include neuro differences as it has learned to accept racial differences. DS fits the 1.5% category of children that cannot be educated in the current UK mainstream set up, without considerable additional resources. Yet I see our children as the canaries in the coal mine of a failing system. Humans are not widgets and schools should not be sausage factories.

We have the knowledge to help them (ABA, evidence practice, good OT & physio, visual tracking training braille etc) yet so many children are not given access to so many methods, therapies and pedagogies that would enable them to learn that it's a scandal.

I am fairly willing to bet that if most of the parents were given FULL & FREE control of their child's state education and therapy budget that they could achieve a threefold improvement in outcomes, while spending a quarter of the current funds. There is a very strong vested industry interest in our children remaining disabled for life. (Social care for adults is now big business, but don't be fooled, noone said our children should be the beneficieries of those funds either!)

autumnsmum · 10/12/2013 10:15

Interesting thread I have two Dcs with autism and I probably wouldn't describe ds as disabled but dd 2 I would . They both receive dla but I think the fact that dd2 attends a sp sch means I see her as disabled but ds is at mainstream albeit struggling at times . I agree with the poster up thread who said that saying your dc is disabled is a good final answer to ignorant comments

2boysnamedR · 10/12/2013 11:12

I do use the the word disabled but in reality ds is 'less able' if you can not bear weight then you can't walk. Ds can - he's just a bit worse at it. But it's a lifelong condition he can not grow out of so 'disability' put that's finality point across.

He can do - he will always doing hard and painful

There is nothing at all wrong with this, it's ok. That doesn't mean I like the fact but its totally ok to be unique.

No one is 'normal' I find most people peculiar - even myself!

2boysnamedR · 10/12/2013 11:18

I feel for these kids who have blinkered parents 'nothing wrong with my child'. I had a helper at the school tell me last week that there are kids in ds class far worse than him. Someone from the lea tell me they see children who they suspect have issues. But if the parents refuse to engage these kids get no intervention. It's like a cheating husband telling his wife he is faithful. Words are just words and words are cheap. Saying your child is excelling in all areas is not enough to make it true. If in reality they have asd but its being ignored, those words aren't changing anything

zzzzz · 10/12/2013 11:26

This reply has been deleted

Message withdrawn at poster's request.

OneInEight · 10/12/2013 11:26

Had similar conversation with dh regarding ds1 (11 years, AS) and that although physically able he is actually more restricted in some ways than really quite, severely, physically disabled children because he can not do outside activities without parental support because of high likelihood of violent meltdowns. My stance was that he is disabled whereas dh still finds it difficult to think of him in this way.

sparklesandbling · 10/12/2013 22:30

yes disabled it is

especially after doctors told me that dd's brain was not formed correctly and is in all likelihood not growing.

It says fuck off when coming across the oh she will catch up/ grow out of it/ that's normal, everyones child does that

MrsPear · 11/12/2013 19:30

I struggle with saying disabled or special needs with regards to ds1. He has auditory neuropathy and has moderate / severe hearing and wears bilateral hearing aids. I suppose that means he has a disability but I still struggle saying that. Interestingly the DLA says that as he has mobility and no learning difficulty - although he is speech delayed - he is nor disabled either and we get nothing.

MariaNoMoreLurking · 11/12/2013 20:50

I prefer 'disability' or disabled to 'special needs'. I like the ballsy attitude of disablity rights activists and want the dc to take them as role models cartoon

My dc don't have 'special' needs, they just have 'needs'. Like any other dc. I can cope with 'additional needs' at a pinch, but 'special' brings me out in hives. But for now, they are mostly unmet needs, unfortunately.

I think this is because the system can't/won't cope with the needs of the majority, never mind adapt to a dc who has slightly more, and/or slightly different needs. Plus the whole scapegoating and/or patronizing anyone different thing, which varies in style according to how enlightened someone considers themself, but is still very prevalent.

I love boch's post. He is disabled when dealing with paperwork for "The Man", but not in and of himself Sadly, The Man is misusing the social model of disability to try and say it's all social, snap out of it, pull yourself up by your (Piedro) bootstraps etc. So people with objectively serious ongoing health problems and impairments are now deemed fully capable of finding a non-existent job / working full-time / sleeping on the street / doing without a suitable education / feeding and dressing themself / managing a major mental illness unaided and without recourse to services.

Which is clearly not what proper inclusion and respect is about.

bochead · 11/12/2013 21:14

Our children will lead the next revolution at this rate as a result of their childhood experiences.

MariaNoMoreLurking · 11/12/2013 21:18

Sometimes I wonder if that's what IDS is worried about...

Jacksterbear · 13/12/2013 12:22

I really struggle with where DS fits in to the disabled/SN/NT categories. He has dxes of SPD and anxiety and his difficulties massively impact in his ability to participate in and cope with normal everyday life. However as he doesn't have a developmental disorder I think that technically makes him NT. I think, but am not completely sure, that he would count as disabled for Equality Act purposes. But I would feel a total fraud, and am sure would be met with Hmm faces, if I described him as such in an everyday RL situation.

It doesn't help that my DBro has very profound learning difficulties (non-verbal, non-mobile, doubly incontinent etc) and I find it difficult to place him and ds in the same category (yes I do realise disability is a very wide term and comes in a huge range of forms but somehow it's still hard to accept).

In many ways it doesn't matter, he is who he is, but in others I feel it matters to me, and later in life will matter to him, to be able to feel comfortable with where he fits in.

PolterGoose · 13/12/2013 12:28

This reply has been deleted

Message withdrawn at poster's request.

Jacksterbear · 13/12/2013 12:53

Thanks Polter Thanks

MariaNoMoreLurking · 14/12/2013 03:29

Dyslexia counts if it affects the areas Polter names, so SPD/ anxiety should too

New posts on this thread. Refresh page