Disability - what's your perception of this - thread is open to all comers

[Janeway]

I've intentionally not put this into the "special needs" section as some people without first hand experience of such issues have said that they find that area of the site a bit of a no-go area (though I'm sure that that is not the intention of regular posters in that area)and I hope that this may be of interest to a wider audience.

In real life I talk often on Inclusive Design to building professionals and the wider world (having been given a thorough education by disabled people)and find that there are still some very strange perceptions and predjudices. Having spotted an 'off the cuff' remark on another thread I wondered if it might be worthwhile and timeous (with the last section of the Disability Discrimination Act less than a year away)to look at the subject of disability.

I'd like to first suggest an alternate view of disability....

....a person may have an impairment in the use of a limb. organ or sensory function, but this only becomes a disability when they encounter an obstacle in the environment (either physical or attidudinal) that will not accomodate them.

i.e. it is the way that we construct our society that is disabling many of our people. An example is that if we put ladders instead of steps in front of buildings more people would be disabled, whereas if we built buildings with the ground floor closer to the ground (level access) less poeple would be disabled in their attempt to get in.

We all have very different needs and abilities throughout our life

• childhood sees young boys unable to pee in urinals due to the height their put in
• old age sees us unable to open doors cos we can't grip the knobs
• pregnancy sees us unable to get out of our car cos of the width of the parking space. Disabled people are not another breed or another gender, those we chose to call 'disabled' simply fall outwith the spectrum of the human condition that we as a society have chosen to cater for within the mainstream. We are all just a step away from being on the other side of that dividing line.

Many of the people who I've worked with reject the "special needs" lable, as they argue that their needs are the same as anyones - just the way you go about providing for those needs might be different.

Most disabled people are striving to work and contribute their talents to the benifit of our ecomomy. Disabled people and their families in this country together currently represent a disposible income of £50billion per year. It is our perceptions that are preventing them working and spending their cash in our businesses - and perhaps our reluctance to face up to the reality of their lives - prefering to wrap them up in benefits and care systems and keep them hidden away. One has to wonder if we're not all missing out here.... what if Stephen Hawking had hung up his braincells when he became ill, or Julie Fernandez (the blond one from 'the office' had been content with benefits - the list goes on - ... would we not have been a less colourful world?

I'll get off my soap box now and listen to your thoughts....

Been pondering more on this- and why I feel its unhelpful to blurr the lines between say autism and normality (even though I agree there is a spectrum).

Can I give an example of mine. We were moving house and MIL was over to help. We had some peole coming to take some furniture to my Mum's the rest of the stuff was going into storage the next day. I asked MIL to keep ds1 outside on the swing as I knew that he would insist on the front door being shut- which isn't very helpful when someone is trying to load a furniture van. Now this door shutting thing isn't a choice- its obsessive compulsive and a need. He absolutely could not cope with the front door being open. After 10 minuted MIL came in and surprise surprise ds1 started trying to shut the front door (with people in it). She tried to get him upstairs and had to absolutely drag him - because for him the front door still being open was too much. He continued to scream and whack his head on the floor and try and climb over the banister utnil the men had gone and the front door was shut- then instant calm. MIL's reposnse (luckily to dh as I would have punched her) "I think that's because someone said no to him for the first time". A complete misunderstanding of why he was behaving the way he was.

Also you have to understnad that people with say autism may be operating without a theory of mind- in other words they may not understand that someone else has different thoughts to them and doesn't know something that they know (even very able autistic people have been shown to have no theory of mind- although some do learn it eventually). Now having something as fundamental as that missing is bound to be disabling in way that having a few autistic traits (eg liking your pencils lined up in certain way) just isn't. I really feel quite strongly it is important to recognise the differences between normality and say an ASD (just because that's what I have experience of) if we are going to come anywhere close to understanding the problems these people can have.

Yes I agree hmb. My PhD supervisor certainly had some traits (tamum ) but they were an aid in his career and he certainly wasn't disabled in any way.

Totally agree with the too much PC stuff.

If he's the kind of person I know jimjams I know what you mean. An old family friend of ours is 'really' clever, he's an environmentalist and he has definateley got AS and so has his dad

whispers-his dad is the one I thought was the local mp!

I find it very worrying that otherwise excellent, caring, dedicated teachers fail to grasp the idea that AS/ ASD kids are different. They honestly don't seem to understand that they kids are just wired differently from us, and get very annoyed with 'typical' aspie behaviour. And yet none of them would be annoyed if a child couldn't tell the difference between 2 colours if they were colour blind.

hmb not only that they dont understand that kids with phsical difficulties have probs either. I was talking to the lea person, where we are moving to, and she said that alot of schools are moaning about having to empty catheter(sp?) bags and change nappies (in primary school). If this is the case will inclusion ever work? _ I have really strong doubts and I am worrying

Absolutely hmb- and the problem as a parent is that if teachers think like that you are basically stuffed! It's moments like that that I am very pleased my son has a very obvious disability (no language) as then people can understand that he will have problems.

fio2- the government didn't think about things like toilet training when they dreamed up inclusion. Luckily ds1 got it pretty much sussed the week before school started! Cutting it fine! occasionaly accidents now, but no more so than any other slighly ddgy at the toilet training receptio child iyswim.

glad he did jimjams if you have any tips e-mail me - or tell me here I have got to do it before september

God I am panicing aren't I?

That is so sad! And so annoying! Interestingly one of the few placeces that I have seen inclusion work very well was when I was doing a primary placement. They had a year 6 boy with paraplegia. He had a trained helper to sort out the toilet issues. He was totaly integrated into the school and everyone benefited from him being in the school. He even took part in the adventure weekend that they went on.

The government didn't think of all sorts of things when it thought up inclusion

Thats lovely hmb I watched a program on bbc2 last year about 2 schools up north who have totally inclusive policies and you could see they were organised enough to make it work.. It just worries me though that I have rang up our new LEA and they have suggested the one school, there are about 5 or 6 but she said this one would be much much better. No discrimination. I have to walk 1.5m to get both dd and ds there though!

Why cant all schools accept a child for who they are? - shame isnt it?

He even did the night time, blindfolded orienteering with him and his 'pusher' being blindfolded. It was all done so well, lots of tiny little adjustments that were almost impossible to notice unless you were looking realy hard. And his difference wasn't invisible, it was sort of, 'yes, so, he's in a wheelchair, so what'. All very natural and very positive.

good

Cytogenetics, Jimjams? That sounds like it involves a lot of Difficult Sums - I'm out of my depth here!

I think I understand and swym about blurring perhaps not being helpful. Maybe it relates in some small way to our experience of ds2's severe asthma. Amongst other effects, he couldn't speak at times he was so breathless, he had painful pneumothorax, his chest is permanently deformed, we carried a nebuliser everywhere we went and it was only when we tried to get him Statemented that the school took any notice of the effects on his education. And then there was the cocktail of drugs and their side effects. But most people's perception of asthma is that you get wheezy when you have a cold, get a few chest infections and maybe can't run around quite as much as others. So when people said, 'Oh yes, uncle Bert had asthma,' I knew they didn't really have a clue. Even his consultant said "I don't know why he finds it so difficult to cope, I have old ladies with the same peak flow measurements and they don't complain." Hellooooo?? Do old ladies like to go out and play football? Do they want to muck about outdoors in the woods? Do they like to roll around the floor scrapping with their brother? Will they be affected by their inability to access education?? Don't think so...... And as for the growing-out-of-it thing, I just used to think yes, he may grow out of it - if he lives that long. For most people asthma is a minor inconvenience (as I know - my other three are also asthmatic) but for a few it is truly disabling. Btw, our GP used to say I knew more about asthma than he did, as with you and autism.

Ugh, it's all so hard, isn't it, deciding where to draw the line.

Hmb, I'm sorry about your mother. Dementia's a b*mmer, whatever the cause. Dh's father died of it - it's horrible.
Ds2 isn't sure if he'll do the neuroscience PhD as he's thinking of one in organisational psychology, instead. (I've no idea what that is!!) He worries that neuroscience will narrow his later work options to the medical side of things, while OP can be used in industry where he feels he'd have more choices of work and earn more. He said that he and friends can't believe he's thinking of turning down a ready-funded PhD that medics are gagging to get their mitts on, in favour of one that he'll have to find his own funding for!! He'd welcome opinions, though, as he wants to make the right decision, so fire away anyone.

Davros, thanks for the ABA tip - I'll check that out and sign him up

One last thing - there was an ad from the SS in our local paper today for someone to support a young women with autism, at home, 30hrs a week. Previously, I'd not have given it much more than a passing glance but now, because of the sn threads on Mumsnet I've been wondering what is involved, how she lives, what her needs are and so on. Thanks for getting a few of my brain cells working.

Suedonim, it's better to do a PhD in a subject you're really interested in, as it's such a drag. If he doesn't want to be stuck on the medical side then perhaps it's not for him - if others are 'gagging for it' more, then there's his answer, IMHO.

When I worked for an employer as was classed as disabled (I have ME (CFS) IBS and up until July incontinence) I worked parttime had massive support but regularily ended up with weeks(or months) of work.
I begged to be allowed to work from home, to work more hours when 'healthy' and less when 'sick' or 'tired' but got very little action -though it would have been reasonably businesswise.
I took vol redundancy and now work from home I work a nearly 50 hr week (20 before) and earn far more money. I job share with my husband and I haven't been ill since I left work - Sick Building Syndrome or what....
However the point is that the external environment (in my case) controlled my life totally and now I have changed the 'environment' physical & mental(?) I am no longer 'disabled' - I do however have things I can't do and limits to my abilities

Agree with droile about the PhD. They are such revolting things. Cytogenetics is looking at chromosomes (yawn)- and do you know what I used to say (this was pre- ds1) "oh I shouldn't have done a PhD in cytogenetics- I'm not interested in it - I should have done a PhD in autism". Seriously!!! Don't wish too hard for things you never know what you may get.

And yes I do understand what you mean about asthma. When Ds1 was 11 months he had extremely severe eczema. Literally the only patch of normal skin was his feet and people used to scream "my god what happened to him was he scalded?" when I took him out. It severely limited what he could play with- and yet most people's understanding of eczema is an itchy patch in an elbow crease. Severe eczema can be disabling- I think it all comes down to a matter of degree.

GLad you got over your ME to some extent KatieMac- I have a friend who has had it for about 8 years now- and I know how difficult his life has been at times.

dd1 nursery wont help with eczema at all. have tried to get them to keep a bottle of cream there but they have refused. they will accomadate inhalors tho. total inclusion wont work till people with medication/equipment they need regulary and the care they need are provided for them. some people with asthma i know had to leave their inhamors at a first aid point in a large club.

Misdee- I think that is a demonstration of the nursery totally misundersatnding the problems of severe eczema- and a problem with blurring the boundaries between a disability and a variation on normal (in their way of thinking probably "child x has eczema and they don't need emollients applied all the time so why does this child?"

fio2- sorry toileting. No tips I'm afraid - it just clicked.

Having said that becuase he has 1.0 support it isn't really a problem anyway. The LSA takes him- he can't pull down trousers etc yet so he still needs a lot of help. No-one has moaned (wthout 1.0 it would have been harder- but I made sure this was in the statement).

He still has accidents so I send him in incontinence pants. That way any accident makes him damp but doesn't leave a huge puddle on the floor. The school are good at taking him to the toilet regularly (again that 1.0 helps).

Sorry, this is really OT but thank you for the PhD comments. Whenever my older three have had to make choices in education, (from Standard Grades up) we've always encouraged them to take subjects they like, not what will supposedly be useful.

Ds2 doesn't really operate that way, though. Whether he likes a task or not, if he takes it on, he'll do his d*mnest to be no1 in it, he's very determined and competitive. As a small example, he needed a third subject at uni and ended up with French because there was nothing else feasible. He then got uptight at a student who was very proficient and shouldn't have been in their 'beginners' group. After yet another session where noone could get a word in edgeways he came home and learnt 200 words of vocabulary in one evening so he could challenge her the next day. He was eventually offered an Hons course in French. I know that he'll rise to the challenge whatever he does but it does help if you like your subject, I'm sure!

Cytogenetics sounds really interesting, Jimjams why is it boring?? Ds is interested in autism so maybe he should go the neuropsychology path.
Sorry again for being OT.

Suedonem, It depends if your ds is interested in the reasons why the brain function of someone with asd is different to a NT person. If he is, then neuropsychology is were it is at. If he is interested in the developmental issues in Autism, then developmental psychology is were it is at. The key to a happy Phd placement is to find a group that is working in a field that absorbs you 100%. Neuropsychology as an area is very large and diverse, and it is the nature of the group that would have the greatest imact on your ds. And he needs to be 100% comitted because the money is rubish, and the hours can be very long. I use to put in 10 hour days 7 days a week for 3 months at a time. And I bet you did too Jimjams. But if he is interested enough, it is one of the most fulfilling things you can do.

ah no cyogenetics itself isn't boring really- human cytogenetics is very interesting. Like most PhD's you end up focussing on a very narrow area and so you do that do death. Mine was looking at a certain population of mice- and I really wasn't interested enough in the minutae iyswim. At the time I was very fascinated by everything about autism and used to read loads about it. Be careful waht you wish for

Your ds2 certainly sounds determined- and I would imagine he'll do whatever he chooses very well!

Yes the hours are somewhat long as hmb says I think the key is to find a research project that fascinates you- where you want to read everything there is to read on the subject.

Suedonim, has your ds looked into 4 year PhD courses at all? There are quite a few running in different unis now, many of them funded by the Wellcome Trust. The students on these courses (which are very competitive to get into) get around £15k pa. The really good thing for someone like your ds is that the first year is made up of several short projects, so you get the chance to experience different topics, and different styles of working. Many of the students come back to one of their mini-project labs to do their PhD. The one I'm involved with is Genetics and Disease which covers developmental biology, genetics and infection/immunity, but I'm sure there are courses with a more Neuroscience bent. Feel free to email me if you want more info; I have two students in my lab now who have come through the system and are doing very well, confident that they've made the right choice right from the start. It's definitely worth considering.