I feel that is important to raise awareness of disabilities that are hidden .Mental health, aspergers, dyspraxia are often misunderstood and people feel that if you cant see anything wrong, then there isnt anything wrong with that person.It is partly to do with the Department for Work and pensions.You only have to look at their website and the bit about getting disabled people in to work to realise this.

What does everyone else think?

I think the whole problem is, that if you say you are disabled (I am) people think you are in a wheelchair (Im not). I havent had any trouble with DWP so far, Ive been on incap a few years, had medicals etc and they have been fine. Now the people who do the DLA, well thats another story. Im sure Im just one of many who have had problems with the DLA people.

Its not just DWP though. I used to love going to live music events but because of my disability certain seats would not be suitable. For instance if everyone stands up I cant stand for more than a minute, so I wouldnt see anything. Also a seat where I have to keep getting up for people going past is a problem. When I have contacted the venues some have been good (Sheffield Uni were the best). Others just offer to accommodate my wheelchair - which of course is non existent.

I agree totally, Ive had experience of people looking at me strangely when I say Im classed as disabled and Im not in a wheelchair (yet)
Metal health cant be measured in my opinion, the DWP assessed me on what medication Im on.
The council was the same when they came to assess my home for adaptations.
They want to see me when I havent slept for 4 days and Im in excruciating pain, crying and nearly sucicidal, but they always seem to visit you when youre having a 'good' day! Whatever one of those are!

I think that's a good point. I have a problem which really affects my arms and makes standing up and holding on on public transport really painful and difficult but I don't dare ask people to let me have their seat because on the outside I look like a perfectly healthy 20 year old. People suggested I got a walking stick but I don't want to fake a problem that's not there, it's just be nice if I could be honest without being scared.

I agree totally i have narcalepsy,diabetic,had 2 strokes,7 tia,s
and blackouts but dont use a wheelchair and because i go fishing
(never alone for obvious reasons)I am often asked for proof of my disability when applying for disability discount and it gets bloody annoying and embarassing having to explain that I dident nick the blue badge :mad:

I'm a disability adviser and we run various awareness sessions for staff - we always point out that the majority of disabled people have a 'unseen' or 'hidden' disability - I think the message is gradually getting through but people do rely heavily on what they see!

I don't always use my electric scooter and some days are better than other so sometimes I can do a little light gardening but I've heard from my children that some people are muttering about me and some other children have suggested to mine that its because I'm fat and lazy. I even had a traffic warden yell at me and suggest I shouldn't have my badge and a post office clerk who suggested I should get a job. Even the DHSS suggested I was fit for work till my GP wrote a long letter and they backed off. I haven't had a lot of trouble recently but this new government initiative scares me as I could be fine one day and prostrate with pain the next. I don't have a provable condition even though I have the opinion of several doctors that I have chronic M.E. A physical assessment could put me flat on my back for weeks. Even staying still for a short time causes pain but its not measurable by a doctor is it? I had a friend that was shouted at for several months because he had chronic pain and it was discovered he had a TB abcess on the spine. Another who was told there was nothing wrong with her for years despite chronic headaches, she had bone cancer in her skull. Doctors who can't find the cause of your disability can be very aggressive I've found. So if you are like me, not visiblly disabled and not clearly diagnosed it can be scary. Suppose they decide I should be at work or even worse accuse me of fraud. I wish I didn't need the money but I do. Every assessment I feel scared of their reaction.

I think that's a good point. I have a problem which really affects my arms and makes standing up and holding on on public transport really painful and difficult but I don't dare ask people to let me have their seat because on the outside I look like a perfectly healthy 20 year old. People suggested I got a walking stick but I don't want to fake a problem that's not there, it's just be nice if I could be honest without being scared.

I have found that the solution to this is to be my height (6'3") and to ask the conductor in a loud voice where I can find a seat because my disabilities are such that if I get off balance I'll fall and land on people and hurt them. It's like the parting of the Red Sea!

I agree totally i have narcalepsy,diabetic,had 2 strokes,7 tia,s
and blackouts but dont use a wheelchair and because i go fishing
(never alone for obvious reasons)I am often asked for proof of my disability when applying for disability discount and it gets bloody annoying and embarassing having to explain that I dident nick the blue badge :mad:

I've lost count of the number of people who seem to think that it's their place to challenge me on my disabilities and to ascertain for themselves that I'm not fleecing the system and the council for the parking fees.

It's beyond a joke and no wonder that they receive anger and frustration in return. I do try to be open and honest with people but the amount of times that it has happened just make me defensive and angry.

Duckweed - the definition of a disability under the DDA is “a physical or mental impairment which has a substantial and long-term adverse effect on his / her ability to carry out normal day-to-day activities”.
The ME alone counts as a disability on these grounds. Hope that helps.

I've lost count of the number of people who seem to think that it's their place to challenge me on my disabilities and to ascertain for themselves that I'm not fleecing the system and the council for the parking fees.

It's beyond a joke and no wonder that they receive anger and frustration in return. I do try to be open and honest with people but the amount of times that it has happened just make me defensive and angry.

Point made, case rested.

Us two clearly have a lot in common, people on here moan all the time that I come across as a bit of a grumbler sometimes, it's because of stuff like this.

I especially get more than a little sick of people trolling and baiting me about the fact I'm not in full time work, due to my disabilities of course! :loopy:

I think people are very ignorant and take far to much at face value, my own mum addressed my son as 'needing a bit of of extra help' & didn't accept him to have Autism at all (worried how it'd look on her). My brother who had spent moments around our child spoke with a single day tutor at some course he was on and informed me to stop worrying as my son had according to this expert in his field my child definately didn't have Autism. We pushed from son as a toddler and he was diagnosed by around 5yrs as having ASD. Most people see him as a naughty boy and at 1st i found myself explaing to strangers when they stared, but now i don't even acknowlede their looks. We were offered 2 hrs help a week in school, even though a doc had at that point done a report stating our son needed every day 1 to 1 support, a school who pulled a face when we said he had special needs (hadn't been diagnosed then) we made the decision to Home Educate, when it was apparent they weren't listening to the doc who was supporting our concerns for our son and were told, we'de be on our own if we went that way with our son. I worry for his future and loath those who think words like 'spaz bus' are funny etc. People seem happier to mickey take a person with unseen needs/condtions rather than to take the time to understand them and their needs. It's like the trolley schemes at Supermarkets, it is a good idea to help those with Special needs to gain confidence etc, but a sham the way staff and customers alike take the michael out of them (even at higher levels of management). We can only hope for the future, but i won't hold my breath.

Point made, case rested.

Us two clearly have a lot in common, people on here moan all the time that I come across as a bit of a grumbler sometimes, it's because of stuff like this.

I especially get more than a little sick of people trolling and baiting me about the fact I'm not in full time work, due to my disabilities of course! :loopy:

Stuff them & sorry for snapping on a while back at a comment you made on a post!:rolleyes:

I sometimes wish I had a card to hand out which explained either my condition or that of my daughter or grandson. Or even a special pass. But I suspect people would just challenge that.

smsm I have thought about the stick thing too, sometimes it would actually be helpful to lean on, but Im not ready to get one yet. I have just applied for a Radar key and I expect when I use that somebody will have something to say.

My own mother, a couple of years ago said to me, you know some of those people who have those scooters, they can actually walk. (rolls eyes). I daren't tell her that I have got one too.

Our son is presently struggling to understand and accept what Autism is and that he has it. He doesn't like my talking about it to others. I wanted to get the friendship bracelets for him to wear, but not anymore.

Are these special friendship bracelets for autism? How do they help?

Are these special friendship bracelets for autism? How do they help?

Sorry, they actual have little phrases in them, i saw them a while back on Ebay. You can also get Badges.

I have an Invisible disability!

I have Autism, I'm not Rainman!

I'm not a Puzzle!

I love my child with Autism!

and many more like them.........Think they are to help children accept etc.

interesting that all these 'diseases' have only just appeared? Did they not happen in the past? Is it not quite a convenient excuse for other matters? Its too easy to say I'm ill. Perhaps if the entire welfare system was removed, then people would realise there are things they can do for themselves and not just expect it on a plate.

interesting that all these 'diseases' have only just appeared? Did they not happen in the past? Is it not quite a convenient excuse for other matters? Its too easy to say I'm ill. Perhaps if the entire welfare system was removed, then people would realise there are things they can do for themselves and not just expect it on a plate.

twaddle, twadle and more twaddle.

If ME has only just appeared, why is it that the famous Florence Nightingale is alleged to have suffered from it back in the 1860's/70s? (aftr the crimean war)

Autism? it's not a "New" "disease" (*coff* condition!) My sister's diagnosis was nearly 40 years ago, and when I was mental handicap nursing, i nursed pople in their seventies who had diagnoses of Autism.

you would not tell a person with a fractured leg, or a spinal cord injury "Oh, walk on it, you mardy, lead-swinging fool!" and people who are coping with invisible conditions deserve the same respect as those whose conditions are more visible.

twaddle, twadle and more twaddle.

If ME has only just appeared, why is it that the famous Florence Nightingale is alleged to have suffered from it back in the 1860's/70s? (aftr the crimean war)

Autism? it's not a "New" "disease" (*coff* condition!) My sister's diagnosis was nearly 40 years ago, and when I was mental handicap nursing, i nursed pople in their seventies who had diagnoses of Autism.

you would not tell a person with a fractured leg, or a spinal cord injury "Oh, walk on it, you mardy, lead-swinging fool!" and people who are coping with invisible conditions deserve the same respect as those whose conditions are more visible.


Totally agree with every word you said Plain Talker, couldnt have said it better myself x

interesting that all these 'diseases' have only just appeared? Did they not happen in the past? Is it not quite a convenient excuse for other matters? Its too easy to say I'm ill. Perhaps if the entire welfare system was removed, then people would realise there are things they can do for themselves and not just expect it on a plate.

I read somewhere that ME has been around for 100's of years. It used to be called atypical polio at one time, because of how the symptoms were so similar to the effect of the polio virus years after the initial infection.

I do wish it was so easy to say I'm ill and have it accepted by the benefits system. I have had ME for around 7 years, diagnosed for 5 and I have yet to make a benefits claim - simply because I can't face the assessment.

interesting that all these 'diseases' have only just appeared? Did they not happen in the past? Is it not quite a convenient excuse for other matters? Its too easy to say I'm ill. Perhaps if the entire welfare system was removed, then people would realise there are things they can do for themselves and not just expect it on a plate.

I don't expect it all on a plate- I insured my income before I was ill so I pay my own mortgage, I pay my NI stamp, I pay tax and I'm still paying into my own pension.

That does not take away from the fact that I've got a degenerative spinal condition and massive surgical damage from surgery to treat cancer.

interesting that all these 'diseases' have only just appeared? Did they not happen in the past? Is it not quite a convenient excuse for other matters? Its too easy to say I'm ill. Perhaps if the entire welfare system was removed, then people would realise there are things they can do for themselves and not just expect it on a plate.

This Group is, "A welcoming place for all people with disabilities and those who spend time caring for others to talk about caring, benefits and support."

It's not meant for ignorant, spiteful cretins like you to make insulting and offensive posts.

Now bugger off back under your bridge.

well said dozy

he/she is just a troll with only 6 posts ATM. Probably joined the forum to wind people up. Take no notice, his/her opinion isnt worth a brass fart as my mother would say.

GL note

I was going to delete that offensive post and a couple of follow ups 'cos they quoted it, but thought an informed response from group users might be more effective.

I've got my eyes open, have no fear.

I read somewhere that ME has been around for 100's of years. It used to be called atypical polio at one time, because of how the symptoms were so similar to the effect of the polio virus years after the initial infection.

I do wish it was so easy to say I'm ill and have it accepted by the benefits system. I have had ME for around 7 years, diagnosed for 5 and I have yet to make a benefits claim - simply because I can't face the assessment.

Hennypenny, if you need to claim, then do it, and at any stage, you can have someone with you for support. They can't answer for you, but can make life feel easier during any assessment which might be needed.

Don't be put off, especially if it's for DLA.

I do need to claim, because I can't reliably work. I have tried different jobs and have had to give up on each in turn as my illness has worsened. I am currently self employed but can only work a few hours each week.

I am on a lot of disability forums and I have heard from other people the difficulties they have with the same illness as I have, ME, where it varies significantly from day to day. Some of their descriptions of how they have been treated have been appalling.

A young man I know was asked to lift his leg, and shouted at when he used his hand to lift it - but that was the only way he could lift it. He was treated like a naughty small boy and received derision when he tried to explain his disability. He was ready to walk out of the assessment and not have the benefit, luckily his mother was there and asked the doctor to show more sensitivity - the doctors reply was "it is my job". Her retort that it was her son's life and didn't they think that he would much rather be like the other young men of his age and be able to go out and do all the things they could do? After that the doctor did behave more respectfully. He had only applied for the benefit because the student welfare people at his university had recommended him to. By the way can't fault the university who have bent over backwards to help him to attend and do a course there, even though he often is too ill to go.

I just wish I had a £1 for every person that tells me I dont look blind, and then they ask me to explain why im blind and how l;ong ive been like this and also why ive had my daughter, people talk loadly to make me hear? but most people just turn away, im trying to get into teaching at reception level so that youngsters can be around different people, my daughters 4 and weve only had a year to get used to the situation but she accepts it brillently

I do need to claim, because I can't reliably work. I have tried different jobs and have had to give up on each in turn as my illness has worsened. I am currently self employed but can only work a few hours each week.

Just for a point of clarity, are you talking about Incapacity Benefit or DLA, or both? Obviously, only give as much detail as you feel comfortable with!

I am on a lot of disability forums and I have heard from other people the difficulties they have with the same illness as I have, ME, where it varies significantly from day to day. Some of their descriptions of how they have been treated have been appalling.

Which is why whenever I've completed DLA/AA forms for people, I've considered bad days only, and got doctors/consultants/qualified medics to fill out the "statement from someone who knows you best" bit, and the medications parts. As they're only small bits of the form, they don't charge, or at least, I've never been charged, and I've done hundreds of them.

To be honest, some of the real problems I've had have been from the EMP*(External Medical Practitioner)'s reports. Some have borne absolutely no resemblance to the claimant (or 'customer', as people are now called) when I've read the copy in the tribunal bundle.

The main problem herein lies with the fact that medical advice is always placed above that of a lay person. If someone's brother has written a very descriptive piece in the "SFSWKYB" bit, it could be ignored in favour of the EMP who has seen the 'customer' just the once.

And there's the rub as far as the Civil Service is concerned, and by the same token, probably a lot of the reason why people have it in for the Civil Service in these matters. Realistically, a Civil Servant can only take the main body of information to make the decision from qualified medical evidence to support the claim form; it stands to reason. That evidence (and indeed much of the supporting evidence from lay people) however, is often fatally flawed. On the part of the lay person, because it doesn't support the disability/condition properly, and quite frankly, on the part of the EMP because the reports are inaccurate.

Whichever way, they can both create many inconsistencies with the main body of evidence; the main claim form.

A young man I know was asked to lift his leg, and shouted at when he used his hand to lift it - but that was the only way he could lift it. He was treated like a naughty small boy and received derision when he tried to explain his disability. He was ready to walk out of the assessment and not have the benefit, luckily his mother was there and asked the doctor to show more sensitivity - the doctors reply was "it is my job". Her retort that it was her son's life and didn't they think that he would much rather be like the other young men of his age and be able to go out and do all the things they could do? After that the doctor did behave more respectfully. He had only applied for the benefit because the student welfare people at his university had recommended him to. By the way can't fault the university who have bent over backwards to help him to attend and do a course there, even though he often is too ill to go.

Good on the mother, and good on the University!

*previously known as BAMS (Benefits Agency Medical Services) reports

Just for a point of clarity, are you talking about Incapacity Benefit or DLA, or both? Obviously, only give as much detail as you feel comfortable with!


I have been advised that I should be eligible for both.

My grandfather used to say he wanted to put a sign round his neck saying 'I'm deaf not stupid.' It never seemed to occur to people if he didn't respond it could be he didn't hear. Even though he had a large visible hearing aid. Even if you have a visible disabillity you are not always treated well. My niece who is partially sighted asked the policeman when they were going to do something about teenagers hanging round her flat drinking and smoking grass was told they couldn't do anything because she hadn't given a clear description. She asked him "Why do you think I have a white stick?" People rarely seem to try and put themselves in anothers position and make assumptions without thinking. Why do we have to continually explain our disabillity to everyone? And what about those who are manic depressive or schizophrenic? The diagnosis is often just a matter of opinion. Are they going to get dragged to inquisition after inquisition? I would think about 80% of those with disabilities are not easily visible as disabled. I've been to assessments in the past that included a guy with six months to live and a girl with extreme spina bifida. Such assessments cost over £100 per head. The government will spend more money than it saves. Do those in parliament (not just the present goverment) have to subscribe to the Tabloids view of disability as an excuse for the lazy?

I have been advised that I should be eligible for both.

Well, either depending on NI contributions, or savings, you'll be ok for IB or Income Support on grounds of disability for the first 26 weeks so long as you have valid sick notes.

As for DLA, I think it's very dangerous for anyone to say "you should get it". There are only a handful of rules which determine what level of benefit is awarded, if it's awarded at all, and all of them are open to opinion, even the most structured of them. It's even more dangerous when it's a condition which is as misunderstood as ME. I would certainly advise you to get in touch with an advice centre about it though.

I know from experience that unless you have a disability which is seen, such as being wheelchair bound, getting anything out of the Government is like getting blood out of a stone for genuine cases, yet they're falling over themselves to give it to people who are clearly on the fiddle?! :loopy:

Not to mention the fact that in some cases you need a Degree in English to understand the forms! :loopy: :rant:

If you are concerned about the doctors who do the Incapacity Benefit medicals at Hartshead, dont be. I had one recently and it really was no problem, he was very respectful, the questions he asked were not tricks nor difficult and he only wanted me to do some very basic stretching. I was on my way to casualty as I had an eye problem and he even took a look at my eye at the end of the exam.

I did have one visit me at home for DLA a few years ago and he wasn't quite so patient, but didnt shout at me and wasnt rude. The main problem was I didnt understand his accent I think, and sometimes he didnt understand what I said.

If you are concerned about the doctors who do the Incapacity Benefit medicals at Hartshead, dont be. I had one recently and it really was no problem, he was very respectful, the questions he asked were not tricks nor difficult and he only wanted me to do some very basic stretching. I was on my way to casualty as I had an eye problem and he even took a look at my eye at the end of the exam.

I did have one visit me at home for DLA a few years ago and he wasn't quite so patient, but didnt shout at me and wasnt rude. The main problem was I didnt understand his accent I think, and sometimes he didnt understand what I said.

This is one of the distictions I wanted to make, as an IB assessment is to confirm the medical evidence from the IB50 form, which may or may not have evidence from your GP.

The DLA assessment is much different and very often the results from the EMP are very different to the real conditions that the sufferer lives with, often because the claimant is having a good day (isn't it typical?).

The two benefits are also determined in hugely different ways. What should be remembered in all cases however, is that there isn't anything to fear from either assessment.

I have IBS (So the Drs say :rolleyes: ) And I have been in incapacity based income support for 2 years due to this. What I find rather frustrating is the fact that IBS on its own is not enough to be able to claim DLA, even though it leaves me housebound for days on end quite often :(

I have increasingly realized quandaries that go beyond the catch-all general ignorance or dismissal of mental illness. I have been quite open and frank about my illness over the years, and taken steps to explain, sometimes even with printed handouts, the nature of the condition, the types of symptoms, what triggers them off, the difference between me making a prat of myself when I'm in a normal state and when my brain has hijacked my senses and I temporarily lose control and capacity to reason, how hard I've worked on it, etc etc etc. Yet some people Just Don't Get It. Occasionally the person who Just Doesn't Get It has actually been a mental health worker, which is bizarre.

But some people are just beyond educating. If they're ignorant it's through choice, because they don't *believe* it exists, or they think it's a personal weakness or a character flaw or an excuse. Or even worse, some deliberate attempt at 'attention seeking'. Yes, because I so enjoy people thinking I am some mad rageful lunatic, sure I'd volunteer to present myself that way by choice. :rolleyes:

The especially frustrating thing is that unlike many of the mental illnesses PTSD is measurably, observably there in the brains of autopsies. Parts of the brain are different from other people's, yet it still doesn't 'count' as a real existent problem.

A few weeks ago I had enough of being tangled up in other people's messy attitudes to it, and decided on a zero-tolerance policy. If people didn't Get It then sod them. I simply removed myself from having to deal with them. The effect of only choosing to deal with people who Got It was paradoxically a wonderful sense of calm and safety, and the PTSD died down. Trying to mix with those who just don't get it seems to be a trigger in itself.

I think that's a good stance to take, Purdy. If you aren't expending energy on the "prats" who can't and won't understand, you will have more energy to expend on the things that matter, like yourself.

I get panic attacks, and I can't always explain what triggers one, or when I'm fighting to get out of a building, in a rush, (or as much of a rush as I can muster in the chair) when an attack is coming on, I can't explain to the person I'm with, that this is what's happening. I just have to make a "dash" for the exit.

I suppose- and I hate to say it- that I have an unseen disability.
Im partially blind and the condition is worsening by the day but you wouldnt realise that I suppose, if you met me.
Im always walking in the country and even though Ive been strictly banned from using the computer or reading or watching TV or basically doing ANYTHING that might put the slightest strain on my eyes I still insist on doing them.
I do have the occasional problem when my eyes go into "Off mode" for a day or so and I cant see a bloody thing but so far thats been temporary and I occasionally get lost and have to phone for help from the other half or family to come and collect me if the light changes suddenly when Im out and about, but on the whole, to look at me, apart from the dark glassses you wouldnt think there was anything wrong.
I suppose there are lots of people out there with hidden disabilities,

I think that's a good stance to take, Purdy. If you aren't expending energy on the "prats" who can't and won't understand, you will have more energy to expend on the things that matter, like yourself.

I get panic attacks, and I can't always explain what triggers one, or when I'm fighting to get out of a building, in a rush, (or as much of a rush as I can muster in the chair) when an attack is coming on, I can't explain to the person I'm with, that this is what's happening. I just have to make a "dash" for the exit. My bold

Tell me about it! My partner suffered from panic attacks and legged it quite often. Some days she'd fine in a particular situation, another she'd be off like a ferret up a drainpipe. The number of times I found myself chatting inanely either to myself or a total stranger, because she'd just gone :hihi:

If we ever went into a shop, or a market, or anywhere there was the slightest possibility she might have a problem, we always arranged a suitable meeting spot outside the problem area! Where were mobile phones when we needed them?

An article on Asperger's that I found interesting:

http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2008/04/06/st_aspergers.xml&page=1

I have been advised that I should be eligible for both.

Try contacting the ME group (2636700) and they will put you in touch with someone who has experience of filling in the DLA forms. Don't try to do them alone as the forms are not designed to be helpful to people who don't have 'tickbox' type illnesses.

Best of luck.

I have IBS (So the Drs say :rolleyes: ) And I have been in incapacity based income support for 2 years due to this. What I find rather frustrating is the fact that IBS on its own is not enough to be able to claim DLA, even though it leaves me housebound for days on end quite often :(

It can be, but it needs to be very carefully worded, and would almost certainly go to appeal. What you'd need for this would be supporting evidence from a doctor/specialist which would reinforce your words.

I'm not quite sure what you mean by reinforcing my words?

I'm not quite sure what you mean by reinforcing my words?

I'm assuming it means a letter or report from a Doctor / Specialist which confirms the effects of the IBS and how debilitating (sp?) it is for you. This backs up what you say and gives more weight to your argument - its not just you who says its a big problem!

I thought so, just wanted to make sure :)

I sometimes wish I had a card to hand out which explained either my condition or that of my daughter or grandson. Or even a special pass. But I suspect people would just challenge that.

smsm I have thought about the stick thing too, sometimes it would actually be helpful to lean on, but Im not ready to get one yet. I have just applied for a Radar key and I expect when I use that somebody will have something to say.

My own mother, a couple of years ago said to me, you know some of those people who have those scooters, they can actually walk. (rolls eyes). I daren't tell her that I have got one too.

I did have a card for these purposes - fat lot of good it did; people dont bloody read & if they do they then do just what the card asks them not to do.

Ooops error I still DO have a card but it's a bloody waste of time because people bloody well dont read.

I am very interested in the lack of awareness that there is in this country around disability,especially people on the autistic spectrum.I am in the processs of setting up my own consultancy, which will be called The Aspergers Consultancy and I am going to be on a stall.There is a conference at Sheffield Hallam Uni on the 30th June if anyone is interested .I will be there to talk to about anything relating to Aspergers syndrome

I am very interested in the lack of awareness that there is in this country around disability,especially people on the autistic spectrum.I am in the processs of setting up my own consultancy, which will be called The Aspergers Consultancy and I am going to be on a stall.There is a conference at Sheffield Hallam Uni on the 30th June if anyone is interested .I will be there to talk to about anything relating to Aspergers syndrome

Not having a rant at you - I'm just sick of the intolerance, deaf ears and blindness (pun intended) of able-bodied people and their attitudes to disability. I was actually told things are better now we've got the DDA. Like heck it is.

Now if you're disabled you've got to PROVE your disabled whereas under the old regime you had to register on the EMployment Department's Disabled Register. I got my green card with photographic medical evidence without any fuss or bother.

So it's not just autism.
Back problems - yeah I know what everyone's gonna say but if you've had a broken back it's real bad news and people cant see pain.
RSI - that's also seriously painful.
ME is just plain debilitating.
Thyroid problems - not funny and can have very serious consequences
Cancer - dont get me started
AND I Havent even got to what is my secondary disability which results in my getting treated with a shedload of cow dung - roll on when I sling it back with catapults.

And the list goes on and on and on and on. Caborn thinks that because he's got some action for wheelchair users that he's resolved the disability problem in Sheffield - has he heck.

Well said.I know that not everything disabled is about being in a wheelchair.
DWP particularly are bad at recognising this.The Government needs to be educated and we al need to raise awareness.

Well said.I know that not everything disabled is about being in a wheelchair.
DWP particularly are bad at recognising this.The Government needs to be educated and we al need to raise awareness.

In what ways, and in which parts of DWP?

In what ways, and in which parts of DWP?

As a general rule, the people I've come across in DWP have generally been far more tolerant than the rest of what passes itself off for humanity but is in reality cesspit rejects

In my experience,DWP do not recognise other disabilities on their websites.Mental health and people on the autistic spectrum are overlooked as the subjects are still misunderstood and taboo.I used to work for an organisation called Bridge Employment who support people in to work with learning disabilities, mental health issues and autism.I have done interviews regarding my success in getting work, even though I have Aspergers and a mental health problem, but they still do not quite get how much support people need to be able to get and maintain a job with issues such as mine.I want to raise the profile of this subject and as I am also trying to set up my own business, I will be offering workshops and presentations to anyone who is interested.

In my experience,DWP do not recognise other disabilities on their websites.

Again, in which way? It would be impossible to go through the whole gamut!

Mental health and people on the autistic spectrum are overlooked as the subjects are still misunderstood and taboo.

DWP is a huge Department, and has a whole area dedicated to disability called the Disability and Carers Service. The problem you might see is that you can't be face to face with people from this Service, as it deals with benefit provision, for those not compelled to work. For people with mental health problems, or communication problems, that can be a huge barrier, I agree, but in terms of finding employment, that's why there are 'partners' to help with that, such as Bridge, which you mention.

What changes would you like to see?

I used to work for an organisation called Bridge Employment who support people in to work with learning disabilities, mental health issues and autism.I have done interviews regarding my success in getting work, even though I have Aspergers and a mental health problem, but they still do not quite get how much support people need to be able to get and maintain a job with issues such as mine.I want to raise the profile of this subject and as I am also trying to set up my own business, I will be offering workshops and presentations to anyone who is interested.

I'd be very interested myself to see them, and feel free to let us know when you've got any workshops, etc., ready :thumbsup:

The cahnages that I waant DWP to make are to have an understanding that disbaility is not just about mobility.It is also about problems that people have that you cannot always understand and mental health is something that they just do not promote.there is no support mechanisms in place to get people on the autistic spectrum in to jobs.Bridge Emplyment need proper funding to enable them to get people who are often hard to work with and need a lot of support in to work, and then they need to support them and the employers to keep them in work.This is just not funded properly by government departments.The contact number for Bridge employment at The Zest Centre, Upperthorpe is 2795055.they are a great bunch of people so anyone who wants to work but feels they cannot due to lack of support, if you hvae a learning disability, mentla health problem or you are on the autistic spectrum, then get in touch or go on their website

www.bridgeemployment.org.uk

There are disabilities that are not seen and equally disabilities that people hide. I've got disabilities I don't mind admitting and I've got ones that I'm not that keen on talking about.

You can't always put a plaster on something and kiss it better - mores the pity :)

Again, in which way? It would be impossible to go through the whole gamut!



DWP is a huge Department, and has a whole area dedicated to disability called the Disability and Carers Service. The problem you might see is that you can't be face to face with people from this Service, as it deals with benefit provision, for those not compelled to work. For people with mental health problems, or communication problems, that can be a huge barrier, I agree, but in terms of finding employment, that's why there are 'partners' to help with that, such as Bridge, which you mention.

What changes would you like to see?



I'd be very interested myself to see them, and feel free to let us know when you've got any workshops, etc., ready :thumbsup:

I have some presentations ready now.I am trying to get some bookings.There is a charge for the service.I have posted a thread in the General discussions section.
I would appreciate some advice.
Thanks

The cahnages that I waant DWP to make are to have an understanding that disbaility is not just about mobility.

DWP doesn't 'think' that disability is just down to mobility, but if people are expected to look for work, I agree, hidden disabilities can be overlooked. If people aren't expected to look for work, few do. That is the really fine line which nobody has been able to put in the right place yet.

It is also about problems that people have that you cannot always understand and mental health is something that they just do not promote.there is no support mechanisms in place to get people on the autistic spectrum in to jobs.

I think that's very valid. Many mind differences aren't registered by the Personal Capability Assessment for Incapacity Benefit, and as such, people with them who are on JSA could be expected to look for work which may be unsuitable.

Bridge Emplyment need proper funding to enable them to get people who are often hard to work with and need a lot of support in to work, and then they need to support them and the employers to keep them in work.This is just not funded properly by government departments.

It's not a Departmental responsibility though.

The contact number for Bridge employment at The Zest Centre, Upperthorpe is 2795055.they are a great bunch of people so anyone who wants to work but feels they cannot due to lack of support, if you hvae a learning disability, mentla health problem or you are on the autistic spectrum, then get in touch or go on their website

www.bridgeemployment.org.uk

I must say, I've heard nothing but good reports :thumbsup:

DWP doesn't 'think' that disability is just down to mobility, but if people are expected to look for work, I agree, hidden disabilities can be overlooked. If people aren't expected to look for work, few do. That is the really fine line which nobody has been able to put in the right place yet.



I think that's very valid. Many mind differences aren't registered by the Personal Capability Assessment for Incapacity Benefit, and as such, people with them who are on JSA could be expected to look for work which may be unsuitable.



It's not a Departmental responsibility though.



I must say, I've heard nothing but good reports :thumbsup:

Is it not a responsibility to offer the right support to people who need it, to enable them to get in to work?Surely DWP have a moral responsibilty to comply with the Disability Discrimination Act as do employers.What happens is that when i used to work with people who had disabilities such as dyspraxia, they would go to interviews and employers would say that the job was not suitable for them as they would much rather have someone who does not have any problems.they know that if they take them on they cannot get rid of them as they are protected by the dda.

I am not sayingthat all employers are like that, but there are a lot of them that need to change their fixed ideas about mental health and disability.

Again, in which way? It would be impossible to go through the whole gamut!



DWP is a huge Department, and has a whole area dedicated to disability called the Disability and Carers Service. The problem you might see is that you can't be face to face with people from this Service, as it deals with benefit provision, for those not compelled to work. For people with mental health problems, or communication problems, that can be a huge barrier, I agree, but in terms of finding employment, that's why there are 'partners' to help with that, such as Bridge, which you mention.

What changes would you like to see?



I'd be very interested myself to see them, and feel free to let us know when you've got any workshops, etc., ready :thumbsup:
Hi Happy Hippy.Can you tell me which Dept you work in and who to contact to see if DWP would be willing to get my training ?
I know that someone from Cavendish Court was interested but i do not know who to go to first.
Thanks

Myself since leaving school at the age of 16 has never worked, i had loads of bad things happen, at school and when i left school, some of them where family/friends passing away.
i suffered from depression and panic attacks, so i been claiming incap for years.
now since leaving school i have found out that i have a heart problem SVT (Supraventricular tachycardia) basically, i got a pain in my chest as if my heart was going to explode, i went to the local a & e and they rushed me through, my pulse rate was 260 beats per min, its ment to be between 80-100 beats per min. I got told i have a hole in the heart what is causing the problem, it could be operated on but theres a risk that i could have a pace maker put in me, at that time i was only 19 yrs old and i got told alot of things that (at that time) you could use or do, inc cant use a mobile phone.

In november 2006 my incapacity stopped due to one of the medicals, not enough medical points, so i was then claiming income support, then DWP got in touch with DLA as i was getting low rate (because i needed some one with me when i went out) and DWP told them i didnt recieve enough points so DLA stopped my money. i was living on £28 a week from nearly £115 (inc DLA) i went to appeal, but lost them.
Now i still have the heart problem, its uncontrolable as it can just come o at any time, i cant get a job as i do have to tell them about my problem so they dont take me on.
I am thinking to apply for DLA again, as it has been over a year now.
But i agree on this thread as again i have a disability what doctors cant see.

I'm a member of the 'but you don't look sick' group... you can search for the facebook group if you're a facebook member.

Although I do have a visible disability in my leg, my leg is covered all the time and many people don't realise there's anything wrong. People I've seen on a regular basis when walking the dogs will notice me taking steps on at a time and say 'oh what have you done to your leg' as they've never noticed my limp.

The fact that my disability is far more than just my leg, people don't understand and I find it's usually the anaemia and fatigue that people find hardest to understand because I 'look so healthy' :lol:

Hi everyone,

I've been reading through this thread, and agree totally with a lot of what has been said. Invisible Disabilities are very frustrating, because people assume that if you can put one foot in front of another, there is nothing wrong with you!

Don't expect the DWP to have all the answers either! They don't have the best track record when it comes to dealing with their disabled staff (despite Investers in People, & Positive about Disabled People charter marks). There are a few people who pay lip service to the above, but many at grass roots level are less than helpful!!!

Enough said, Rant over - sorry folks, just HAD to get it off my chest!

PS Do wish I'd fathemed out how to get those little face icons on to this page, the little red/shouting one, reflects just how I feel!!!

PPS I just found out (by accident), how to put those little faces onto the page, Yipeee! :)

Hi everyone,

I've been reading through this thread, and agree totally with a lot of what has been said. Invisible Disabilities are very frustrating, because people assume that if you can put one foot in front of another, there is nothing wrong with you!

Don't expect the DWP to have all the answers either! They don't have the best track record when it comes to dealing with their disabled staff (despite Investers in People, & Positive about Disabled People charter marks). There are a few people who pay lip service to the above, but many at grass roots level are less than helpful!!!

Enough said, Rant over - sorry folks, just HAD to get it off my chest!

PS Do wish I'd fathemed out how to get those little face icons on to this page, the little red/shouting one, reflects just how I feel!!!

PPS I just found out (by accident), how to put those little faces onto the page, Yipeee! :)
The DEAs are in need of training in some disabilities and how to manage people and help them overcome their problems.

The problem is usually down as usual to the old issues of funding.It is truly amazing that Alastair Darling can find billions to bail out the banks and pay for building projects to keep people from being on the dole, but by not finding essesntial money to ensure that employers are trained to understand the needs of people with disabilities, he is actually costing the country a fortune.There are after all 2.64 million on incapacity and many of those are people with disabilities.
Please can someone explain how this is sensible.There is no logic to this.
It is bury your head in the sand mentality and hope that they will keep quiet and go away.

But ... people are making a stand and rallying round.We are all in this together you know.All of our lives are affected indirectly by this and people will not sit back and put up with it anymore...:rant::rant::rant:

The DEAs are in need of training in some disabilities and how to manage people and help them overcome their problems.

The problem is usually down as usual to the old issues of funding.It is truly amazing that Alastair Darling can find billions to bail out the banks and pay for building projects to keep people from being on the dole, but by not finding essesntial money to ensure that employers are trained to understand the needs of people with disabilities, he is actually costing the country a fortune.There are after all 2.64 million on incapacity and many of those are people with disabilities.
Please can someone explain how this is sensible.There is no logic to this.
It is bury your head in the sand mentality and hope that they will keep quiet and go away.

But ... people are making a stand and rallying round.We are all in this together you know.All of our lives are affected indirectly by this and people will not sit back and put up with it anymore...:rant::rant::rant:


I know where you are 'coming from' , but I was actually ranting about the DWP itself. They sometimes have a 'do as I say, but not as I do' mentality!!!

Little wonder that other organisations, don't have the support, will, or backing (financial or otherwise), to fully absorb the requirements or meaning of the DDA.

Sorry, if I seem to be going on a bit about DWP. It's a very old wound that keeps on festering, so to speak - I'll get over it one day!

The DEAs are in need of training in some disabilities and how to manage people and help them overcome their problems.

I've got to jump in here and say that that is twaddle. I used to work in the Access To Work section, and obviously, we were aligned with the Disability Employment Advisers. I can't think of one DEA who didn't know about most problems, and what sort of work/training people could take.

The problem is usually down as usual to the old issues of funding.

I disagree. The problem is down to a lack of suitable, realistic, and more to the point genuine opportunities for people with disabilities and difficulties, and the fact that people with disabilities have been marginalised for centuries, until the last twenty years, when a lot (not enough, but a lot) of progress has happened.

The reason for the dearth is often to do with travel and such, rather than the ability to do the job.

It is truly amazing that Alastair Darling can find billions to bail out the banks and pay for building projects to keep people from being on the dole, but by not finding essesntial money to ensure that employers are trained to understand the needs of people with disabilities, he is actually costing the country a fortune.

Which is a fair point, but when most employers don't need to be aware, why would they be? The major firms all have awareness policies. How far down the employer scale are you looking, as in number of employees, for a start?

There are after all 2.64 million on incapacity and many of those are people with disabilities.
Please can someone explain how this is sensible.There is no logic to this.
It is bury your head in the sand mentality and hope that they will keep quiet and go away.

Nobody can deny that disability doesn't mean inability (see my sig!), but disability and illness covers such a wide area, it's impossible to narrow.

But ... people are making a stand and rallying round.We are all in this together you know.All of our lives are affected indirectly by this and people will not sit back and put up with it anymore...:rant::rant::rant:

And for that I'm glad. Without such work, there would have been no progress whatsoever, and I know you'll do well.

I've got to jump in here and say that that is twaddle. I used to work in the Access To Work section, and obviously, we were aligned with the Disability Employment Advisers. I can't think of one DEA who didn't know about most problems, and what sort of work/training people could take.



I disagree. The problem is down to a lack of suitable, realistic, and more to the point genuine opportunities for people with disabilities and difficulties, and the fact that people with disabilities have been marginalised for centuries, until the last twenty years, when a lot (not enough, but a lot) of progress has happened.

The reason for the dearth is often to do with travel and such, rather than the ability to do the job.



Which is a fair point, but when most employers don't need to be aware, why would they be? The major firms all have awareness policies. How far down the employer scale are you looking, as in number of employees, for a start?



Nobody can deny that disability doesn't mean inability (see my sig!), but disability and illness covers such a wide area, it's impossible to narrow.



And for that I'm glad. Without such work, there would have been no progress whatsoever, and I know you'll do well.

Of course they do need to be very aware.hence all the problems our family are now going through with a major employer in Sheffield.

How many companies are paying for in depth training in awareness of the DDA???Tell me who?? I would very much like to meet them.It is not at the top of their list of priorities, even when it gets to the stage of tribunals. They dont need it until they need it so to speak.
When it affects their budgets and staff are off sick and the human resources department cant cope, then they look at doing something.It is all too little too late.

Only yesterday I had an enquiry from someone who is a very difficult situation with a major employer over his disability(not Sheffield) and he doesnt know what to do.
Of course, I could offer my training, but they will not have money in the pot for that will they???

Happy Hippy..

You say that DEAS know about most problems.I am not denying that they know about them.But knowing about them and actually having an in depth knowledge of how to understand and overcome these problems and help them to find a suitable job that the person can get and keep is a totally different matter.That is why a lot of the DEAs would refer clients to Bridge Employmnent as they offer specialist support and understanding.I know as I used to work for them and know a lot of the DEAs very well.They are a good bunch of people doing the best they can.I am not denying that.

All I am saying is that employers must wake up and smell the coffee and that includes all the statutory sector organisations like the educations sector, the council, DWP, the NHS etc etc etc...

Oooh! Er! This is all getting a bit heated! Perhaps my fault for ranting about DWP!

Anyway, thought I'd stick my oar in and point out that perhaps we are digressing a bit from the 'Silent Disability' issue that this thread is all about.

I think the problem is that whole DDA training and awareness thing such a complex issue, that it is difficult to divorce from discussions on disability itself.

In my personal experience, even those who are DDA 'Aware', seem to think that throwing equipment and adaptions at you right, left and centre, fixes everything! In the case of Silent Disabilities, this has a limited affect. If people cannot see what is wrong, they tend not to believe you.

In all honesty, it's not just awareness that has to change, but attitudes!

Just an update..
I have a meeting in my diary on the 6th November to see the strategic planning manager for learning disabilities in Sheffield and also someone from the Primary Care Team.
I am looking forward to meeting them.

If anyone has anything that they want to put forward about what they need from services here in Sheffield for people with Asperger Syndrome, please let me know and I will put your points forward.

Email me

Thanks

Hi Espadrille

I am not sure what remits the people you are meeting have, but it is always as well to mention that a lot of parents who have children with AS end up educating them at home as schools often are not a good place to be for these children.

It does help if people in authority are aware of home education as it is bad enough feeling forced to pull your child out of school and educate them yourself, without constantly meeting with suspicion over your motives from people you meet up with such as doctors, speech therapists, health visitors, the bloke down the corner shop, etc etc, who can sometimes be ill informed and have in the past caused severe distress by telling parents that home education is illegal and their child will be taken away etc.

Just spreading awareness that home education is totally legal and has good outcomes for children with aspergers (as for children without) would be a start for us - thanks!

Hi Espadrille

I am not sure what remits the people you are meeting have, but it is always as well to mention that a lot of parents who have children with AS end up educating them at home as schools often are not a good place to be for these children.

It does help if people in authority are aware of home education as it is bad enough feeling forced to pull your child out of school and educate them yourself, without constantly meeting with suspicion over your motives from people you meet up with such as doctors, speech therapists, health visitors, the bloke down the corner shop, etc etc, who can sometimes be ill informed and have in the past caused severe distress by telling parents that home education is illegal and their child will be taken away etc.

Just spreading awareness that home education is totally legal and has good outcomes for children with aspergers (as for children without) would be a start for us - thanks!

Ok I will make sure they know that
Thanks

Hi Happy Hippy.Can you tell me which Dept you work in and who to contact to see if DWP would be willing to get my training ?
I know that someone from Cavendish Court was interested but i do not know who to go to first.
Thanks

The team is based in Hartshead who deal with this, and you should go to the District Manager in the first instance for help. Sorry I missed this post :blush:

Of course they do need to be very aware.hence all the problems our family are now going through with a major employer in Sheffield.

I didn't want to reply to this until I'd got enough time to do it justice. Still haven't, but here goes!

I think you miss my point. Most employers do not need to be aware of the problems of disability, because it doesn't affect them. Short of access for people with disabilities, most employers in the country don't need to know a thing. Most companies aren't multinationals.

How many companies are paying for in depth training in awareness of the DDA???

Tell me why they should! Any awareness should be (and was) Government funded, as it's a national policy, and the right one.

Tell me who?? I would very much like to meet them.It is not at the top of their list of priorities, even when it gets to the stage of tribunals. They dont need it until they need it so to speak.

I doubt that there's a single 'large' employer who isn't very aware of what DDA entails.

When it affects their budgets and staff are off sick and the human resources department cant cope, then they look at doing something.It is all too little too late.

Again, you're looking at large employers. Go down London Road, Abbeydale Road, and Chesterfield Road, and see how many one-wo/man bands there are. They're the people who know nothing about DDA really.

Only yesterday I had an enquiry from someone who is a very difficult situation with a major employer over his disability(not Sheffield) and he doesnt know what to do.
Of course, I could offer my training, but they will not have money in the pot for that will they???

And not all problems which appear to be about disability are best dealt with under disability laws, but I don't know the circumstances of this personal case, so can't comment.

I don't know what you charge, so I can't say whether they'd have enough!

That was a lot shorter and more brusque than I wanted it to be, but I've said summat now!

Happy Hippy..

You say that DEAS know about most problems.I am not denying that they know about them.But knowing about them and actually having an in depth knowledge of how to understand and overcome these problems and help them to find a suitable job that the person can get and keep is a totally different matter.That is why a lot of the DEAs would refer clients to Bridge Employmnent as they offer specialist support and understanding.I know as I used to work for them and know a lot of the DEAs very well.They are a good bunch of people doing the best they can.I am not denying that.

All I am saying is that employers must wake up and smell the coffee and that includes all the statutory sector organisations like the educations sector, the council, DWP, the NHS etc etc etc...

Do you really think that the Civil Service and Local Authorities haven't smelt the coffee? I really don't understand where you're going with this.

Oooh! Er! This is all getting a bit heated! Perhaps my fault for ranting about DWP!

Anyway, thought I'd stick my oar in and point out that perhaps we are digressing a bit from the 'Silent Disability' issue that this thread is all about.

I think the problem is that whole DDA training and awareness thing such a complex issue, that it is difficult to divorce from discussions on disability itself.

In my personal experience, even those who are DDA 'Aware', seem to think that throwing equipment and adaptions at you right, left and centre, fixes everything! In the case of Silent Disabilities, this has a limited affect. If people cannot see what is wrong, they tend not to believe you.

In all honesty, it's not just awareness that has to change, but attitudes!

Very true. From my time in the Access To Work team, we could find all sorts of weird and wonderful things to help people, but that is one of the important words - 'help'.

It doesn't mean 'solve'.

To use what may be only a partially transferable analogy, "You may know the Green Cross Code, but you can still be knocked down."

Does that make sense?

Do you really think that the Civil Service and Local Authorities haven't smelt the coffee? I really don't understand where you're going with this.

Everyday in the statutory sector organisations, I speak to different people about some of the issues that they face when it comes to not being aware of problems around disability issues. I accept that some of them know what Asperger Syndrome is.They have heard of it and particularly with schools, they have children getting diagnosed with it every week, but as in the NHS, if there hasnt been any forward thinking around budgeting, even though a lot of support is required in all sectors, ie. in school, in care settings, in adult education, in employment etc, there appears to me to be so much ignorance and buerocracy that I come across every day that I just despair sometimes.
That is what I mean when I said wake up and smell the coffee.

When you spend as much time as I do talking with people who have Asperger Syndrome and hear how unhappy they are with the service providers, then I feel it really is time that Government agencies started to take notice of what they are saying.
I will have a good opportunity on the 6th November to put our case and have also an opportunity to talk with my local councillor on the issues so I do feel that at last something is happening.

I didn't want to reply to this until I'd got enough time to do it justice. Still haven't, but here goes!

I think you miss my point. Most employers do not need to be aware of the problems of disability, because it doesn't affect them. Short of access for people with disabilities, most employers in the country don't need to know a thing. Most companies aren't multinationals.



Tell me why they should! Any awareness should be (and was) Government funded, as it's a national policy, and the right one.



I doubt that there's a single 'large' employer who isn't very aware of what DDA entails.



Again, you're looking at large employers. Go down London Road, Abbeydale Road, and Chesterfield Road, and see how many one-wo/man bands there are. They're the people who know nothing about DDA really.



And not all problems which appear to be about disability are best dealt with under disability laws, but I don't know the circumstances of this personal case, so can't comment.

I don't know what you charge, so I can't say whether they'd have enough!

That was a lot shorter and more brusque than I wanted it to be, but I've said summat now!

I know of a very very large one.

I just spent 3 months trying to get them to see the light!!!
They now know what it entails but they really didnt realise that they were actually about to break the law by not offering a reasonable adjustment .I wont say who they are on here as you really just would be gob smacked and they now appear to be 'doing the right thing' but you would be amazed really amazed...

Very true. From my time in the Access To Work team, we could find all sorts of weird and wonderful things to help people, but that is one of the important words - 'help'.

It doesn't mean 'solve'.

To use what may be only a partially transferable analogy, "You may know the Green Cross Code, but you can still be knocked down."

Does that make sense?

Yes, it does make sense, and sorry I didn't respond to this earlier, I've been a bit distracted of late!

Update from my meeting on the 6th.
There are 2 documents that are strategies for provision in both learning disability and mental health.Yes, I know that Asperger Syndrome doesnt really FIT in to any of those.

However, I am in the process of responding to both strategies and will soon be meeting someone in education to talk along the lines of provision of support for children in schools.
I really feel that this is a great opportunity to have a say in the outcome of what we want for ourselves and our families and I do believe that the people steering these strategies will listen to what we say.
The other angle is employment.I shall be meeting my local councillor in December about this also.

From where I am positioned now, I feel that things will change.It will take time, but I can see there is now a shift from being in the dark about hidden disabilties to the statutory services and also central Government realising that it is in everyones interest to do something about this.

I will keep you updated.

Thanks

I also now have an appointment scheduled with a senior manager in the education Department.

Although we have known for quite a while we have just been told that it is very likely my son has Dyspraxia(although he is too young for a formal diagnosis)
I feel when people look at him they just think he is clumsy and aloof.
When it comes to writing(although he is only 5) he really struggles and things like getting dressed and using cutlery are not easy. Any useful advice would be appreciatd as i don't know of what support is out there.

Thanks

We are holding a FREE drop in event at
learn 2
South Road
Walkley
on

25th November 2008
6-8pm

Get free advice on Dyslexia,dypraxia and Asperger Syndrome from 2 leading experts in the field

I just found this quote bt Martin Luther King and I wanted to post it here.

'A right delayed is a right denied'

This sums everything up that I have been saying to the powers that be over the last few months and it is so true in my opinion.

People who have a disability do not want to wait years for the rest of the world to wake up and smell the coffee.

Yes, I may be an idealist and I know that doesnt work 'in the real world', but MLK thought along the same lines as I do.

I love that quote from MLK-jr

I'm going to use that in my sigline.

Good idea PT

Very interesting thread. I have ME, and like others have said it can be 'hidden'. One major reason for this is that ME can vary quite a bit, so I only ever venture out when feeling OK. So people only ever see me OK! From this they make the assumption I am putting on my illness. Thing is, when you feel ill 90% of the time and once in a while feel well enough to go out ie a game of snooker or the pub quiz, you will make the most of it! Yet people think because of this you should be working a 40 hour week. You can't seem to win sometimes. Stay in you get frowned upon: make an effort they and they berate you for not doing more. I have just got a little part time work and things seem to be even worse with the gossipers because of this!

Very interesting thread. I have ME, and like others have said it can be 'hidden'. One major reason for this is that ME can vary quite a bit, so I only ever venture out when feeling OK. So people only ever see me OK! From this they make the assumption I am putting on my illness. Thing is, when you feel ill 90% of the time and once in a while feel well enough to go out ie a game of snooker or the pub quiz, you will make the most of it! Yet people think because of this you should be working a 40 hour week. You can't seem to win sometimes. Stay in you get frowned upon: make an effort they and they berate you for not doing more. I have just got a little part time work and things seem to be even worse with the gossipers because of this!

Totally agree super - I have ME too, and so does my daughter. One of my daughter's friends said the other day that she finds it hard to believe that she has any illness because she always looks ok. They don't see all the days after she has been out with them, when she has to stay in bed all day to get over it!

As you say, no one sees the 90% of the time when you feel dreadful, all their view of you is based on the 10% when you are fit enough to be seen.

I too have ME and totally agree with you!

Even after 5 years my husband can't understand why I find some things so difficult - the cognitive functioning (or rather, disfunctioning) seems to affect me quite significantly. The total mental blocks, brain fog, limited recall etc etc. When I ask him for help, he says "I know you can do that, you're not stupid" :rolleyes: It's silly things like I am totally unable to fill in forms now - and because he won't help me, I feel really let down. I've still not changed my address on things such as Driving Licence and Premium Bonds etc And there's no chance of me ever claiming DLA - I did get someone to help me fill it in over the phone but still never got the final bits done or sent off. Strange really because when I was younger I was a volunteer tutor of adult literacy and numeracy and quite enjoyed filling forms in for other people.

Mind you, saying all that I'm still so grateful that I 'look' perfectly healthy and capable :thumbsup:

I too have ME and totally agree with you!

Even after 5 years my husband can't understand why I find some things so difficult - the cognitive functioning (or rather, disfunctioning) seems to affect me quite significantly. The total mental blocks, brain fog, limited recall etc etc. When I ask him for help, he says "I know you can do that, you're not stupid" :rolleyes: It's silly things like I am totally unable to fill in forms now - and because he won't help me, I feel really let down. I've still not changed my address on things such as Driving Licence and Premium Bonds etc And there's no chance of me ever claiming DLA - I did get someone to help me fill it in over the phone but still never got the final bits done or sent off. Strange really because when I was younger I was a volunteer tutor of adult literacy and numeracy and quite enjoyed filling forms in for other people.

Mind you, saying all that I'm still so grateful that I 'look' perfectly healthy and capable :thumbsup:
That is the hardest part though of having a hidden disability.What is the barrier to form filling?
Is it a lack of confidence or a lack of concentration?

It can be hard to educate some people about illnesses like this. I suppose that is the other thing with M.E. - it is often feeling ill that is the disabling component, rather than a disablement in its own right. Which it can be that of course as well with muscle weakness and all the rest of the symptoms. Yet some people are set in their ways and won't listen or do not want to learn.

That is the hardest part though of having a hidden disability.What is the barrier to form filling?
Is it a lack of confidence or a lack of concentration?

I honestly can't explain the problem - but i'll try! :D

When I first became ill and well before I knew it was ME I was trying to keep working. Every day we had to complete a time sheet - something i'd done for the previous 12 years without a problem - but I would put off filling the sheet in. I'd put my times of arrival and leaving in my diary but for some bizarre reason I couldn't put them on the form and total up the times. I'm not sure if it's the inability to concentrate, read and follow instructions, or understand what's needed - I simply can't explain it. I have a total mental block when faced with a form and go 'word blind' - bizarre!

I honestly can't explain the problem - but i'll try! :D

When I first became ill and well before I knew it was ME I was trying to keep working. Every day we had to complete a time sheet - something i'd done for the previous 12 years without a problem - but I would put off filling the sheet in. I'd put my times of arrival and leaving in my diary but for some bizarre reason I couldn't put them on the form and total up the times. I'm not sure if it's the inability to concentrate, read and follow instructions, or understand what's needed - I simply can't explain it. I have a total mental block when faced with a form and go 'word blind' - bizarre!

You are not alone Bonny, I have had the forms for DLA and Incapacity Benefit for years and have not yet managed to get them completed (not to mention the forms for recovering the endowment mortgage shortfall, and the forms contesting a wrong decision on WTC which left us owing thousands). I just don't feel I can face them. Some of it is the fluctuating nature of the illness, when I feel well enough to face the forms, I think I am getting better, so no need to do them, then when (as is inevitable) I get worse again I am unable to do them.

We are having real problems making ends meet at the moment, and I know that if I could only face the forms I could be getting money that we really really need, and yet I am still unable to do it. There doesn't seem to be any safety net for the people who are too ill to fill in the forms, they just go without.

You know hennypenny I think that's the realy big problem with disbilities that cannot be seen - they're very much underestimated in terms of the help that people need and the difficulties that are not easily overcome.

Where it's causing you financial hardship you really must find a way of getting some help to fill the forms in. The vast majority of people who know anything about ME think it's just 'tiredness' - if only!

I'm not sure what others think, but the only way I can attempt to explain ME is by saying it's 10 or 20 x something. For example walking up one flight of stairs is the equivalent of a healthy person walking up 10/20 flights of stairs - yes I can do it, but it's hard work and i'll suffer for it later - which is why we had to sell our beautiful house (which I loved) and move to a bungalow.

I so wish I could help you hennypenny, maybe someone on here could help you?

Has depression been registered as a disability?

It can be, I think it depends on whether it is long term otherwise I imagine it is classified as an illness.

Has depression been registered as a disability?

If it's bad enough, you qualify for the care component of Disability Living Allowance.

If it's bad enough, you qualify for the care component of Disability Living Allowance.

Very unlikely though. Very, very unlikely.

Very unlikely though. Very, very unlikely.

True. I know of one case, but he has tried to kill himself and therefore does need constant care.

Some people don't seem to want to spare the time to understand anyone with a disability. My wife has hydrocephalus (water on the brain) only limited eyesight due to a messed up operation, poor balance and other problems. Again because she looks as though she has no disablity people give her no time to react to situations. Because she has no field vision she has to stop and carefully locate the edge of a kerbs or steps(cannot see edge very well) recently a women with a push chair hit her in the back of her legs sending her crashing to the ground, then blamed my wife for blocking the way , adding several unrepeatable words. This may not seem alot to most people, but this has added more pressure onto going out alone. We all take too much for granted, few care about people with disablities , but thank god for those that do !
Richard

Some people are horrible whether your disability is visible or not. My niece was knocked over and she was carrying her white stick! The guy started swearing at her and then said are you blind? Yes she said waving her stick at her. When I am in a wheelchair people ignore my right to be in a queue and push in front of me. They frequently block my view.

Unless people have close experience of disability then they tend to judge by appearances. It's just human nature and doesn't make them a bad person. That said, it doesn't make things any easier for the person with the hidden disability. If one more person calls me 'lazy' when I get out of the lift having just gone up one floor then they will feel my wrath! If I was old and walked with a stick then no-one would say a word, but I'm young and can walk fine on the flat!