For finding the term "registered disabled" annoying?

[BobbyBiscuits]

As background, I worked on behalf of the DWP for 15 years, and one project was developing the process/ forms etc for DLA to PIP transition. It was not a nice workplace but I really enjoyed speaking to the clients and getting their voices heard. (I was too junior for any decision making and simply interviewed clients in view to designing the forms etc)

After a MH breakdown, I found myself in the same position as my clients and now claim both PIP and ESA. I have MH which has now generated PH issues. My family are also on same/ blue badge etc.

For some reason recently this terminology has been annoying me...I hear a lot of people describing themselves as "registered disabled'. Why not just say 'disabled'?

This is a voluntary self reporting scheme that some councils offer. There is no such thing in any meaningful terms. Disability is a spectrum and how if affects each person is very different. I hate the benefit system and am not advocating it but get frustrated when people use this terminology as it's meaningless.

There is no register of disabled people, and it's really misleading. It can muddy the waters when people seek help.

I'm not blaming disabled people, but whoever started the terminology.

Any thoughts on this?

Same here.

@Willyoujustbequiet Who issued your card? Is it something issued by your LA area or a charity organisation for carers? I was an unpaid carer for 22 years - never a 'registered 'carer. I was in receipt of carers allowance and also "appointed" to manage the recipients benefits but there's no national registration scheme.

@sondot is absolutely right. They all are not registers of disabled people not as the register of blind people.

@m00rfarm

You google how to register as disabled with xx council and it will tell you if there is a scheme for that council.

I mean I know that but my point is rather how on the disabled person supposed to know this exists if councils don't make them aware? Finding out on mumsnet and having to then google is not an effective method of building a register/

@Willyoujustbequiet

Dc wasn't entitled automatically so we applied based on evidence which included proof we were already on their register.

Presumably to get on the register you had to give the proof in the first place, which you would have just given to the blue badge application had there not been a middle man

The one I have currently is my county carer's association in liaison with my LA.

Yes it's not national but most LAs I believe. I don't use it much as individual organisations tend to have their own schemes/use dc letters as proof but handy to have on occasion.

This is a very interesting thread, and it has made me think about the fact that until quite recently, I had assumed that people only qualified for the 'protected characteristic' of disability under the Equality Act if they had some sort of formal acknowledgement/registration of their disability - which turns out not to be true at all. See, for example, ACAS's guidance at https://www.acas.org.uk/what-disability-means-by-law.
If other people share this same illusion as the one that I was under, this must mean that people with disabilities are disadvantaged when it comes to fighting for their Equality Act rights.

No. I wasn't asked for any proof by the LA. We were on for many years before the BB application.

But down at GPs and school so I suppose it's possible their systems marry up.

Far as the Equality act goes a disability is a condition that has a substantial negative effect affects your everyday life and ability to do things. That could be hundreds of things, when it comes to being “registered” it’s usually linked to a benefit or medical test (like certificate showing you are legally blind).

you could have significant ill health but not qualify for any benefit. You could walk just far enough over 50 metres say. Then not qualify for a blue badge. Your life is still massively affected by reduced mobility but you don’t fit in the system.

the system is a mess, a disabled person on UC can say get help with water or energy tariff but when I checked I couldn’t as disabled on legacy ones.

I've lived under five different boroughs in different parts of the UK since becoming disabled, and none of them operated a disability register.

Obviously SOME do, but what facts do you have to back up your assertion that MOST do?

Regardless, the fact that only some councils operate registers clearly shows there is no form of national disability register.

I certainly find being asked if I'm "registered disabled" deeply offensive and ableist, and I'm worried at the number of people trying to justify it. I have a diagnosis and am a wheelchair user, I would never join a official register of disabled people even if one exists, and it's shocking that employers insist on being "registered disabled" when that obviously does not exist except in very limited degrees in certain areas.

Cards and stuff that you can buy from other private individuals are a completely separate thing.

I mean there's lots of different things but not one giant register
So with the electric company I am registered as a priority
I don't get PIP or a blue badge so the council have no idea about my conditions, but my work does as I have reasonable adjustments

Also, nobody actually tells you "this condition is a disability" when you get diagnosed. They say "you have xyz" and may even make referrals for help such as wheelchair services, but it's up to you to work out that you're now disabled, and therefore have rights.
I was disabled before I got any diagnoses. I've been disabled all my life and didn't know it; and when I developed my chronic illnesses I was a physically disabled wheelchair user for a year before I was diagnosed.

That's me!

I can walk the distance required by the OT but not any further so they turned me down. Ironic given my car is motability and I get enhanced ADP

So many flaws

No it isn't because there is no such things as a register of people with disabilities. So it is of absolutely no help and confers no benefits. There is no such status, it is just semantics, and it is insulting. Why not have a register of people without disabilities instead? I am not defined by my disability, and have no wish to be on a "register".

I'm not justifying anything. No one is forcing you to do anything. It's not compulsory.

With respect living somewhere is not the same as having a career of many years/qualifications in that employment. Teachers respond to education posts. Doctors advise on health matters. I simply offered my professional knowledge/experience. You are free to disagree but there are countless posts now from others confirming it.

My card is not from a private individual. It's from my LA/County Carers.

You seem to find this triggering so am happy to leave it at that.

Please don't be rude. I'm not triggered in the slightest and accusing me of being "triggered" is pretty gaslighty.

I asked you if you had actual statistics or any facts at all to back up your claim that the majority of councils in the UK operate a disability register.

You've gone out of your way to avoid answering, tried to turn the question on me, tried to derail, and tried to paint me as being upset, to avoid admitting that you don't, in fact, have any statistics or anything to back up your claim.

Clearly your statement claiming the majority of councils operate a disability register was an assumption based on your personal experience in your local area. There are nearly 12 thousand councils in the UK!

I wish people wouldn't make sweeping claims based on limited personal experience.

absolutely agree with you OP. I've seen the term very recently when buying tickets for a concert, as well as booking an event for my disabled son. The term is meaningless and I assume those organisations using it are referring to either being in receipt of certain benefits, or having a legally recognised document such as an EHCP.
I've got MS and carry a little card round that I can show to places when I need some assistance, but you buy the card (like you can buy a radar key for disabled toilets), neither of these things legitimise my disability.
It is pointless and unhelpful terminology, that just adds another layer of beaurocracy when trying to make any sort of arrangements that are outside of the norm.

They may keep a log of vulnerable people or similar. But I work in a local authority and we certainly don't have a definitive list of everyone in the borough who is disabled.

Disability isn't defined by registration anywhere, it's defined (in law) by how it limits ability to do normal activities.

But plenty of people with disabilities protected under the Equality Act won't have any need to register anywhere

I earn 6 figures , I don't need to claim benefits. I can pay for a cleaner and don't need care beyond that. I can generally walk far enough to not bother with a blue badge.

That doesn't mean I am not disabled. There are lots of ways my life is very curtailed. But I can see no benefit to "registering" anywhere and haven't done so.

It's tiring the assumption that disabled automatically means claiming benefits.

@Neriah I have apologised here for my incorrect assertion. Perhaps you didn't get to that post.
I will happily say sorry again. I was wrong, but meant no offence.

Yes….being ‘registered’ is like saying it’s official ‘I’m not making it up, I’m REGISTERED disabled!’

Absolutely. And in my view it would be totally legally flawed to use PIP or a blue badge as the evidence required to prove disability because many people who are protected under the Equality Act wouldn't be eligible for either (or might chose not to apply for either).

Hence why I updated our policies at work and in my capacity as a volunteer to remove references to "registered disabled"

Of course depending on the circumstances (eg if giving a grant or similar) it may well be reasonable to ask for evidence but that could be a doctor's letter or similar , PIP/blue badge etc just dont apply for everyone.

No. For the third time it's based on 25 years working across them.

The irony in you wishing people wouldn't make sweeping claims based on limited experience is clearly lost on you as that is what you have just done!

25 years in a profession is not limited experience by anyone's definition so please don't be so ridiculous.

The only one being rude is you as you are dismissing the countless others posts on this thread confirming the same as what I've said . I haven't been rude to you or dismissed your experience but you think it's fine to do that with everyone else's. I haven't asked you to provide evidence for your unsubstantiated claims because I'm aware that it's just an opinion and of no consequence.

I find it utterly bizarre that someone would get so wound up by councils having a voluntary register of disabled people in order to help plan and provide for those people. It's just odd. Why would anyone object to anything that can help in getting disabled people getting support? Do you think they should just make a random guess for the number for accessible housing required? Or be caught unawares with school places/care homes etc.

You really don't seem to be thinking this through at all.

For the record all Councils have a legal duty to maintain such a register for children. From what I understand, they do for adults in Wales too (happy to be corrected) and in my many years experience most LAs do on a voluntary basis throughout England too. Perfectly acceptable to disagree but your opinion is the one out of step.

Let's just leave it shall we as its getting a bit embarrassing now.

I'm disabled myself and it's taken a very very long time for me to describe myself as that. If you're not diagnosed with anything and call yourself disabled and god forbid try to get some support, some people get angry about it.

It took me years of tests and waiting for referrals and to get a diagnosis for one of my physical disabilities years of no support, help or being listened to, and told it's health anxiety. I've lost friends because of my health and even when I was diagnosed, I put off claiming for years because some people in my social circle and community still didn't believe that I'm not lying about the things I can't do, some people hear the word "can't" and decide I must mean "won't"

I think some people use the term "registered disabled" as way of validating their struggles to themselves, if they have the experience of gps not listening to them, or have had shitty comments from the type of ignorant person who thinks without a diagnosis then you must be lying to get time off work or free money.

Even with a diagnosis, especially for mental health conditions like anxiety, there's a lot of judging and people who think because they know someone with the same diagnosis who has a successful career etc then everyone else with it who doesn't work, is on the scrounge.

I don't use the term registered disabled myself but the few people I know in real life who do, have had years, sometimes over a decade, of a physical health problem not being taken seriously and then haven't kept going to the gp when their symptoms don't go away because they've been told it's health anxiety. If it makes them feel able ti access support without doubting themselves or makes them feel listened to then I'm not gonna be mad.

Similar to how a few people I know who get disability for anxiety, just say they have mental health, they don't want to say "mental health disorder" in case they get labelled as crazy but also don't want to say they get disability benefits for and/or can't work due to anxiety because a large amount of people think anxiety is over diagnosed and that it makes a mockery of the disability system. I don't think that way, but I see it trotted out a lot on here and in disability support groups.

Thanks everyone for your responses. It's clear it's evoked a lot of opinion. I don't know whether there 'should' be a central disability register, but at this point there isn't. I think it confuses people into thinking they 'have to' register in some way centrally to validate their disability. Which they don't.
It's almost like "I'm registered disabled, so I'm (assuming) I'm more disabled than you'/ 'some disabled people are faking it' sometimes kind of vibes...
You are disabled if your health condition affects you day to day life adversely. Then you can (try to) claim whichever benefits and help you can for your needs.

No. You are considered disabled in law if your durability has significant adverse impact on normal day to day activities. The "significant" is critical. Many health conditions may become a disability in the future, but don't qualify in law until the impact is significant. Except in a very few conditions, such as cancer or heart disease.