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TheNeil

So Is AS a Disability or Not?

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I've just got the phone to the Disabled Person's Railcard people and I'm well and truly confused. According to everything else that I've read, AS is considered, by the government amongst others, to be a 'disability' which therefore makes me a 'disabled person' (even though I hate the term). However...it seems that, according to the railcard people, I'm not as:

 

1. I claim no benefits (I'm too independent)

 

2. I can see perfectly (oh look, a small pin on the floor next to the door)

 

3. I'm not in a wheelchair (too mobile)

 

4. I'm not epileptic (I'm just clumsy)

 

Huh? :unsure:

 

So which is it - am I disabled or not? Either I am (which begs the question: to why I can't have a railcard) or I'm not (which begs the question: why do I have to inform the DVLA and the like?)

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Hi TheNeil

 

This is so confusing but I say YES you are disabled (Sorry no offence meant) If you were to claim benefits they would say yes you are, to drive a car, yes you are, to go into further education, yes you are

 

I would go back to the rail company and complain. Give them all the disabled person being discriminated against speel. It might work, always worth a try

 

Good Luck

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So which is it - am I disabled or not? Either I am (which begs the question: to why I can't have a railcard) or I'm not (which begs the question: why do I have to inform the DVLA and the like?)

It's the old you have to accept you're mad to prove you're not scenario. If you haven't read (or watched - think you can get it on DVD) Poppy Shakespeare you should - maybe a bit 'girly' :unsure: and it's not about ASDs but about the mental health system (particularly the getting to 'crisis' for support) - it's fiction, but actually it really clearly shows how the 'system' works (or doesn't work).

 

The thing is, maybe with appeal (part of how 'the system' works) we could get DLA, but we choose not to because we personally don't see the need - yet that acts as a 'door' to so many other things. It almost seems like we have to have everything or nothing, rather than having just what we need/would benefit from. It's something I've been thinking a lot about - should I apply for DLA even though it would go against all my beliefs (just to make it clear - it's not that I don't believe people should have DLA, I just think it should go to people who need it - and I would find it very hard, for instance, to justify myself having it because I see my brother getting it and needing it, and I just think my needs are nowhere near the severity of his and I can look after myself). Also, I suppose there's an aspect of me not wanting to claim - I did look at the supplementary form the NAS do and to be honest it really really upset me because it did highlight the issues I have which I try (and do a good job of trying) to ignore.

 

You make a very good point about the DVLA - surely if others take an all or nothing approach, that should be included too? :unsure:

 

That didn't answer any of your questions did it? :oops:

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I would go back to the rail company and complain. Give them all the disabled person being discriminated against speel. It might work, always worth a try

Oooh, I'm liking that reply! And I'm feeling in a mood to kick people (*note to self, actually eating something so you have energy to kick would be a good idea first*) maybe we should get together and do a joint kicking TN?! :fight::star: I get a disabled students Allowance which includes a travel component so it seems logical that when I face the big bad world I should continue to get a travel component.

 

You know, actually I'm really feeling in a kick a*** mood - I've had to put up with so much ###### because of others' views of me being disabled, so maybe I should go and get what I'm entitled to. :angry: (sorry, took over your thread there a bit TN :oops:)

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Oooh, I'm liking that reply! And I'm feeling in a mood to kick people (*note to self, actually eating something so you have energy to kick would be a good idea first*) maybe we should get together and do a joint kicking TN?! :fight::star: I get a disabled students Allowance which includes a travel component so it seems logical that when I face the big bad world I should continue to get a travel component.

Watch out world, the kick-ass Aspies have spoken...and are about to do some serious kicking (have you still got cotton wool pads on your toes BTW? :whistle:). Ready the heavy boots... :fight:

 

You know, actually I'm really feeling in a kick a*** mood - I've had to put up with so much ###### because of others' views of me being disabled, so maybe I should go and get what I'm entitled to. :angry: (sorry, took over your thread there a bit TN :oops:)

No problems angry woman [he says, cowering in the corner and hoping that she doesn't decide to kick him :pray: ]

 

I'm not quite sure what to do about this (the railcard, not the kicking). The woman on the phone seemed adamant (as in 'sure', not as in 1980's make-up wearing highwayman) that these were the only criteria that they accepted applications under. Given that I was on hold for 5 minutes before they even answered the phone, I'm not relishing going down that route again. I could write the obligatory letter of outrage but I'd never know if had been delivered or simply 'mislaid'.

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Personally I think it differs from person to person.

 

I don't view myself as 'disabled' so much as 'differently abled'...sorry for the rather mawkish turn of phrase, but I can't think of a better one at the mo.

 

I don't need and wouldn't qualify for DLA or a disabled person's travelcard, etc.

 

I guess it's maybe like blindness: a person can have very poor sight without being classed as officially 'blind'??

 

Sorry, that's probably a clumsy comparison...

 

Bid :)

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Personally I think it differs from person to person.

 

I don't view myself as 'disabled' so much as 'differently abled'...sorry for the rather mawkish turn of phrase, but I can't think of a better one at the mo.

 

I don't need and wouldn't qualify for DLA or a disabled person's travelcard, etc.

 

I guess it's maybe like blindness: a person can have very poor sight without being classed as officially 'blind'??

 

Sorry, that's probably a clumsy comparison...

 

Bid :)

This is the problem. I don't consider myself to be 'disabled' but certain elements of society do while others don't and it's this lack of consistency that is getting me frustrated. :angry:

 

I've never applied for DLA as I know that I wouldn't qualify (and I'd feel guilty about accepting it) but if the world (i.e. the government and various official bodies) want to treat me as being 'disabled' then I either am (in which I should be entitled to the same rights and opportunities as other disabled people) or I'm not (in which case I don't see why I should be required to inform the likes of the DVLA).

 

In truth I can cope with travelling places but I still get stressed when I have to go places that I've never been before and if it's a choice between driving into a strange city centre (or wherever) or not going at all, I err towards not going. I can get on a train and handle a timetable though, but because I'm not the 'right kind' of disabled, I'm not allowed access to the scheme(s) that are supposed to be in place to help.

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Having AS is sod's law when it comes to disability. In situations where being disabled will disadvantage you, then AS is a disability. In situations where being disabled will advantage you, then AS isn't a disability.

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In situations where being disabled will disadvantage you, then AS is a disability. In situations where being disabled will advantage you, then AS isn't a disability.

That pretty much sums it up precisely :(

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Ive seen places were they appreciate the fact ds has a disability but had others were they say he aint disabled cos he looks noraml!!!!!!

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JP has a NOW card (the bus equivalent of a rail card) so I presume if he needed a rail card he'd have a good case. All he needed was a GP letter saying he'd received disability services, a pretty vague remit & speech therapy was enough to qualify him. I think they'd have a hard job refusing him a rail card if he waved his NOW card at them.

 

Might be worth trying that route as they seem a little easier to obtain? The way we understood it, any kind of medical service you have accessed as a result of your AS could help you qualify.

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Hi

 

Don't know if you receive DLA or not, but if you do, would that then be classed as a benefit?

 

C.

 

 

IGNORE THIS POST

Stupid me! Just read the bit where you say you haven't applied for DLA!

Edited by cmuir

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I think you have to accept that sometimes you have to define yourself this way when you want support. And if you are into the social model of disability at all, then we are disabled in the sense of struggling to live in a world that is not wired the same.

 

A person with even mild epilepsy may be perfectly capable of independent living and working, but would be entitled to a disabled rail card if they are not allowed to drive, even though they might not consider themselves disabled in any other way.

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I don't have any advice, I'm afraid, but the situation just sucks. I think it probably would make a difference if you were receiving DLA, or had one of the bus travel cards pearl mentioned, but without these things I fear you'll meet a brick wall in your efforts. However, if you had these, and threatened with a discrimination lawsuit, I think you might find the tables turned....I'd hope so at least......

 

I wish I were a film-maker, I'd love to highlight this kind of difficulty.....its so unfair.

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I think you have to accept that sometimes you have to define yourself this way when you want support. And if you are into the social model of disability at all, then we are disabled in the sense of struggling to live in a world that is not wired the same.

 

A person with even mild epilepsy may be perfectly capable of independent living and working, but would be entitled to a disabled rail card if they are not allowed to drive, even though they might not consider themselves disabled in any other way.

Thanks Tally1. It's not that it would 'brand' me as being disabled if I go looking for support. It's not even really about the money (although extra cash always comes in handy). It's the complete lack of consistency between the various organisations that is annoying me. Either AS is a disability and I'm 'disabled' (and have to accept the fact...but should have access to the options and support available) or I'm not (in which case, why do the likes of the DVLA need to know?)

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This is the problem. I don't consider myself to be 'disabled' but certain elements of society do while others don't and it's this lack of consistency that is getting me frustrated.

From the Directgov site the legal definition of disability (Link) is that "the Disability Discrimination Act (DDA) defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities." When I first met my local Disability Employment Adviser last September he said AS is definitely covered by this definition.

 

However

I've never applied for DLA as I know that I wouldn't qualify
DLA has far more specific criteria as per this Directgov link. Quite agree the inconsistency is frustrating. Even qualifying for the general "Incapacity" benefit is a doctor/medical driven thing and AS is not "medical". I know I wouldn't be deemed to be medically incapable of work, yet at the same time my condition is marked enough to mean I wouldn't be an employer's first choice as I don't have "good" communication skills.

 

Having AS is sod's law when it comes to disability. In situations where being disabled will disadvantage you, then AS is a disability. In situations where being disabled will advantage you, then AS isn't a disability.

Sod's law indeed, you're so right.

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QUOTE (Canopus @ Aug 11 2008, 05:04 PM)

Having AS is sod's law when it comes to disability. In situations where being disabled will disadvantage you, then AS is a disability. In situations where being disabled will advantage you, then AS isn't a disability.

 

Post of the week - spot on.

 

I have to say that the opinion of AS not being a disability because we at least look normal is the most common. Annoying, and it hurts really because you then do not trust the person communicating with you.

 

Its a disability. The only reason why I have not applied for such a railcard is because I have a Young Person's one for the next 5 years.

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It always seems to me that people with AS are disabled when it suits the system and not disabled enough when it doesn't...thats always been the case when my son wanted or needed anything so far.

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Hi TheNeil et al! :)

 

I've been thinking about this thread alot, as it expresses a very different perspective from my own.

 

Can I ask why you see yourselves as 'disabled'? Did you see yourselves like this pre-dx, or only post-dx?

 

I have never seen myself in this way, and I'm really interested in your different view!

 

Bid :)

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Hi TheNeil et al! :)

 

I've been thinking about this thread alot, as it expresses a very different perspective from my own.

 

Can I ask why you see yourselves as 'disabled'? Did you see yourselves like this pre-dx, or only post-dx?

 

I have never seen myself in this way, and I'm really interested in your different view!

 

Bid :)

I don't see myself as disabled in any way. Yes I'm presented with 'problems' at times that I have to either figure out how to solve or simply avoid (in itself a form of 'solving').

 

I'm still the same person post-dx as pre-dx but now that I know what I am, society (when it feels like it) goes and sticks a 'disabled' label on me. Given that, why can't I make the system work for me? I still have the same difficulties/problems to solve but now that I know why I am how I am. Given the dx there are supposed to be systems in place to help people with certain 'labels' - however the application of those labels seems to become somewhat hazy when you actually go and ask for the help that's supposed to be there. Flip it around though and that label is super-glued to you for all eternity when it suits society.

 

So, to summise, I don't consider myself 'disabled' but society seems to be unsure so it needs to make up its mind. Either I'm not disabled (in which case the likes of the DVLA and can got take a run and jump) or I am disabled (in which I case I expect access to the systems in place for 'disabled' people)(and the nice people at the DWP obviously seem to consider AS a 'disability' as they use AS as an example of disabled people in employment).

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Mmmmm, but in a way, aren't you 'guilty' of the same things, but in reverse? :lol:;)

 

In other words, you're saying you're disabled when it might 'benefit' you (i.e. the disabled railcard|), but you don't consider yourself disabled in other instances? (Not trying to be offensive here...hope you take this as friendly debate! :ph34r::) )

 

I was thinking about my son in relation to this question. When he was a child/adolescent there was no question that he was disabled, and at one point he got high rate for the care element of his DLA. But now, as a young adult, he chose (quite rightly in my view) not to reapply for his DLA when he was 18, and although he still has severe problems he certainly wouldn't describe himself as disabled and I don't think I would either.

 

Also, in relation to your argument about having a right to access the systems in place for disabled people...surely as individuals we have a moral(?) duty to differentiate our difficulties, going back to my rather clumsy analogy about extremely poor sight versus registered blind? In other words, even though AS is classified as a disability, if an individual's AS does not disable them and they don't consider themselves disabled, should they take up resources/services that could be used by people whose disablilities (ASD or otherwise) do disable them ?

 

Bid :)

 

Edited to add: DVLA...my understanding was that AS, ADHD, etc, are considered as medical conditions that might affect driving (along with loads of other things), not 'disabilities'?? :unsure:

Edited by bid

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I don't know if Neil drives or not, but if AS is preventing you from driving, then it does seem unfair that he doesnt qualify for a rail card either.

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Before diagnosis I did not consider myself disabled, but I think that was more to do with not realising than because I felt more capable. I have always had immense difficulty with things that other people find easier. It's just that before diagnosis, I assumed I was crazy, weak and stupid, whereas now I understand why. The term "disability" has helped me to accept accommodations.

 

It was only with accommodations granted by an understanding manager that I was able to keep my first job. I had only just left school and I think he thought I was very young and felt out of my depth, and just needed someone to look out for me a bit. After it became apparent that I was severely depressed, I expect he blamed it all on that. In my second and third jobs I could not cope with full time work, and people realised I had problems, but assumed they were solely mental health problems (so did I).

 

I got my diagnosis of Asperger's after I got my current job. I coped before my diagnosis because of having an understanding manager who realised I was finding things hard and looked out for me. I am struggling at the moment and need accommodations, but I don't know what those accommodations are or whether they are reasonable. The difficulties I am having are contributing to depression, which is creating more difficulties . . .

 

When I am with other autistic people, I still have the same difficulties I have with non-autistic people. I still find it hard to talk to people, for example. However, with a group of autistic people, they make accommodations, and don't judge you based on your ability to have a nice conversation, as happens in work and other aspects of life. It is the accommodations and understanding that make the difference, and not simply the fact that they are like me.

 

Neil has described a situation where his AS makes it difficult to travel to places, and having a disabled railcard would make the train a more affordable way to get to these places. Without the railcard, he will not feel able to go to these places, and will miss out. That sounds like a disability to me (albeit a very specific one), because his condition prevents him from doing something that normal people are able to do.

 

I think that people with AS should have access to appropriate disability support. In Neil's case, that might be limited to a disabled railcard, but there might be other aspies who have no difficulty with transport at all, but need other kinds of support.

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I would recommend that your get onto the Equality and Human Rights Commission about this one.

 

There are very strict definitions and conditions under the Disability Discrimination Act 1995 specifying how services are made accessible to people with disabilities, and the reasons you say were given for denying you access to the Disabled Person's Railcard fail to comply with them.

 

The conditions for the Disabled Person's Railcard are here and they clearly do not comply with the "Words Used to Define Disability" on the Equality and Human Rights Commission website.

 

According to the law, "they (service providers) must make reasonable adjustments if you find a service unreasonably difficult to use." The demonstration of this is clearly not limited to the criteria that they have specified on their website.

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People with AS are not disqualified from getting a rail card, having looked into this for my son (didn't get one in the end because we got a family rail card instead). A person with AS falls under the criteria of being in receipt of either higher or lower rate mobility allowance. TN, if you are not already in receipt of the mobility component for DLA then you could apply for it and if you are awarded mobility allowance then you will receive help with travel.

 

Flora

Edited by Flora

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According to the law, "they (service providers) must make reasonable adjustments if you find a service unreasonably difficult to use." The demonstration of this is clearly not limited to the criteria that they have specified on their website.

 

This is true, but before the law is applicable you have to be proven to be disabled, or at least disabled by your condition. I have AS and I don't need help with travelling or anything else really for that matter. My son has AS and needs help with nearly everything! So having a dx of AS does not give automatic right to services and concessions (as many of us have found when dealing with the education system etc) nor does it automatically mean you are disabled. With travel concessions and other service concessions I believe you have to have some sort of proof that whatever condition you do have is 'disabling' (ie, in the case of AS at least in receipt of DLA care and/or mobility). It is frustrating regarding the travelling, but it's only right that certain levels of proof are necessary otherwise anyone could get it and it would no longer be a concession!

 

Flora

Edited by Flora

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