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....

Re autism and work - I read a fascinating piece in newsweek (? I think) which mentioned an employment agency for people with aspergers. They didn't try to shoehorn people into the same jobs as anyone else, they asked employers about the jobs they had that people hated and where they had high turnover, and these were often jobs with little social contact or where people were expected to focus on tiny details all day long (eg quality control in computing). When people with autism/aspergers took those jobs, they LOVED them. Couldn't wait to go to work to inspect hoover parts or computer software bits and bobs. I thought that was truly a great way to act, to show that disabilty was also abilty iyswim.

hmb's post (blind people/pilots) reminded me of this - Miles was interviewed on Radio 5 and was truly inspirational!

That was a great article, it was good to see that nothing was going to get in the way of his dreams. But I have to repeat, he couldn't be a professional pilot. Sometimes the persons problems are a disability, no matter how many adjustments society makes. And in this regard disabled people are no different than the rest of us. There is a vast range of things that I can't do!

My Mother is disabled. Nothing anyone can do can restore her memory. She is loved, respected and cared for, but she is still disabled. When I see her next she will have no idea who I am, we just can't work round that one.

I still agree with hmb- there is a difference between not being very good at something and not being able to do something full stop. I do think that the idea that a disabled person can get over anaything if only they put their mind to it is quite unhelpful. My son has out his mind to langauge for 4 and ahlf years, he tried really really hard. BUT for whatever reason he is unable to undersntad about 95% of spoken language. Not for want of trying, or input or help (that's got him the 5%) - but he still can't do it.

I think that you are right, Jimjams, and to pretend that everything is possible is just as unhelpful as writing disabled people off as incapable of doing anything. And it also panders to the idea that to be a person of value you have to be the same as everyone else. Deaf people can't hear, but they have developed their own culture that doesn't depend on hearing. Different, but just as valid. Lets rethink our society and value all our differences. Lets see what disabled people bring to enrich society, rather than pretend that we are all the same, when we obviously all individuals.

Exaclty Hmb. Deafness is a good one. Having read up a bit and watched a few programmes about this, I think hearing people nearly always underestimate the strength of deaf culture- of having your own langauge. BSL is seen as being an aid to undersnading English or something, rather than it's own seperate lanaguge as rich as any spoken one.

By Janeway's proposed definition I am disabled, as I live in a country where I cannot speak the language. I buy the wrong things when shopping, I can't read some of the signs when I'm driving, and I certainly have trouble communicating with doctors about my son's health. But I keep trying to communicate, even if it is probably embarrassingly bad, but often still resort - especially under stress, to the 'do you speak english?' I am isolated by this disability and even alienated, when people realise I am a foreigner, and I haven't understood what they have just said about my cute baby. BUT it is my choice to live here and otherwise, in an english speaking society I wouldn't have a problem, so I don't think I should expect to be accommodated necessarily (although occasionally it is nice) or regarded as disabled.

I just contribute this to illustrate that perhaps the definition is a little too broad.

Ange8 Miles will be flying to Australia in a "talking" plane next year.
Lets all wish him well.

The difference though Aussie- is you have a choice. You are putting yourself in a siutation where you make life difficult (iykwim). (And I've lived in the same circumstance so I do understand what you are saying). Someone who is "truly" disabled has no choice.

BTW - I have to say I don't think that living in a foreign country is nearly as difficult as beng disabled. I'm not sure why and its hard to explain. I guess even though I couldn't speak the langauge/read the writing- somehow I didn't have all that much difficulty in buying food, socialising, finding my way around or even making myself understood. I certainly didn't have anywhere near the difficulties my son has, and far more of society was accessible to me.

I'm sorry, I've been a bit absent for the last couple of days due to sick baby so I don't think I can read AND DIGEST all of this thread so that's my excuse if I talk rubbish (as usual ) I have to agree with Jimjams (of course!). No matter how adapted an environment could be or improved societies' attitudes could be, some people would still be disabled and unable to function at a normal level within this adapted environment. I've always thought its funny that when people talk about "adaptations" you can almost see the thought bubbles saying "ramps"! Whenever possible I try to draw attention to the needs of the "learning disabled", e.g. M&S's new websites giving info for the disabled on facilities in different towns. I emailed them and got no answer!! I don't have a problem now with the word "disabled" although I do think it can be a negative thing as it implies inability. I kind of got used to the jargon and use it to my advantage now when dealing with LEA or health people etc. I always say I've learnt to speak fluent special needs! They do seem to listen more if you are comfortable with their jargon and appear not to mind using it. I also have the same issue as Jimjams, in that people see my son and think he CAN do things he can't rather than the other way round.

I think we are in agreement jimjams - it is my choice and so I can't really complain (I don't starve or have accidents). Also I am on the improve. I wouldn't presume for one moment that my experience is anywhere as difficult as the experience of someone who is defined as disabled in the more classical sense. My point was that I think the new definition proposed is too broad.

I think we agree as well AussieSim I was just trying to think what abut the differences.

I did find a friend easting cat food and pasta in Japan (he thought it was a tin of tuna)

AussieSim - exactly what organ or limb is impaired to stop you speaking the language of the country you are in? The definition infers that there must first be an impairment before there can be a disability

There's such a lot of food for thought, here, great thread, Janeway.

Ds2 is in his final yr of a psychology degree and we were talking about this sort of thing last week. He was telling me that researchers are discovering loads of new learning difficulties along the lines of dyslexia, dyspraxia, ADHD, and a whole host of others which I've forgotten. It could be that a majority of people will eventually be defined as having a disabilty as the line between 'normal' and 'abnormal' gets more blurred. I've certainly heard from friends with autistic spectrum children that their specialists regard everyone as being somewhere on the autistic spectrum, it's a matter of degree. Maybe if more peoplee regarded themselves as having some sort of disability society would be more inclusive. Or am I just a dreamer.....?

Ds2 is currently working on apraxia in people who've had strokes or brain tumours. It's fascinating stuff, although I find it hard to understand it all, at times. He's been offered a PhD place in neuropsychology - Istr you have a PhD in psychology, JimJams - is that right?

I used to work in Neuropsychology before I had our children. I worked on epilepsy and on Parkinson's disease. It is an amazing dicipline, very absorbing, and so worthwhile. Will he continue in the area of strokes? That is what has caused my Mothers dementia. A very worthwhile area that isn't as well funded as it might be, not a 'sexy' subject, I suppose.

Hmb, for what it's worth strokes are attracting a lot of attention in terms of "genomic medicine". We have a new post at work and 2 out of 3 interviewees have been medics working on stroke epidemiology/genetics.

Sorry to go off-topic, but I'm sorry to hear about your mum. Is there any evidence that strokes and heart disease are more common in S.Wales than in the UK as whole do you know? My mother is from the valleys, and nearly all her family have had cardiovascular disease (if the dust didn't get them first ) but I've never known if it was just our family or a more general issue.

Not sure, but I wouldn't be surprised. I was contacted by a group taking part in a genomic study of Alzhiemers, but had to tell them that we wouldn't be suitable, since Mum has vascular dementia.

Regarding the genetic predisposition, it is possible. But this has been made worse in my family by a dreadful diet, heavy smoking, heavy salt use and badly controled hypertension. And I think that the same is true for many of the people in the valley. Mum would add a level tablespoon of salt to our veg!

Bless her. Yes, that's a good point about diet. My granny was a fantastic cook, but it was a very meat-based diet. My grandfather on the other hand existed on tomato sandwiches and cigarettes....

Forgot to say, how about the Puzzle Pound? I know the puzzle piece is somewhat associated with autism but its a good metaphor for people who are different fitting together (corny?!).
Suedonim, if your son wants some extra cash while he makes up his mind what to do next and to do something relevant to his degree, tell him to think of becoming an ABA therapist. Look at www.peach.org.uk or send him to me!!

AussieSim: I imagine that as an American, some people would say I'm culturally disabled, wherever I go...

Cytogenetics Suedonim. I don't know much about psychology. ALthough I suspect I know more about autism than most psychologists

Your point about the lines being blurred is interesting. I've just met a couple of friends for lunch and we were kind of touching on this coincidentally. We all felt that it wasn't very helpful to regard an extreme of normality as any sort of disability because we felt it tended to underplay the problems that our children had and we represented a fairly broad range of the spectrum). It means that people fall into the trap of thinking "well so and so did that but then he was able to learn to do x, y and z", whilst not appreciating that so and so could do that precisely because they didn't really have any major problems. Everyone has some features of autism, but they don't necessarily interfere with their lives. (I don't judge how disabled someone is by their verabl ability, IQ or anything like that- one of the mum's there has a very intelligent dd, very verbal, who is equally disabled as ds1 really- it was far harder to get her into school than ds1- and still she has many more problems than ds1 with coping with mainstream school. For people like her- who can come across as very able- I think its important that the lines aren't blurred- does that make sense?)

To take it further. DS2 is defintiely cack handed and certainly has some sensory issues with things like noise (and possibly speech). However he isn't remotely disabled in the way that ds1 is. In fact even if he turns out to have verbal dyspraxia I wouldn't say he was disabled- mainly becuase I think he can find a way round it. Mind you it does seem to have dawned on him this week that he is talking gobbledegook and he seems to be trying to pronounce some things correctly now.

Interesting points Jimjams. I have posted in the past that I met a lot of 'undiagnosed' AS cases while I worked in research. (you made very similar points) However these people were not 'disabled' by AS. Different because of it, yes, but not disabled. I've got rubbish vision, but I'm not disabled by it. It is a difficult line to walk between acceptance of difference as valid, while recognising the difficulties that disability can produce.

This area needs a lot of honest discussion, led by the people who are most affected by disability. I think that a lot of inclusion policy has muddied the waters and left the needs of many disabled people unaddressed. There is a lot of PC talk, and not enough cash and honesty IMHO.