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?

I know what you mean OP as there is no central register of disability. As the proud owner of a couple of (unregistered) disabilities I always want to ask out of curiosity what people mean by this.

I'm quite au fait with the benefits system etc having also worked there so I can stretch to what they might mean (ie they have a blue badge or claim PIP I imagine).

But I also wonder what others who don't know how it all works think is meant - I'm sure there are a few people who have concluded there must be a central database of disability and if you're not on it your disability isn't real.

I'm guessing because of self diagnosis or something, it's people's way of saying "I'm actually disabled and not just self diagnosing". Sort of like how people who are diagnosed with Anxiety Disorder would clarify they have diagnosed Anxiety to differentiate from anyone else saying they have anxiety.

I understand there's no official disabled register but some people may find it more comfortable using those council ones as their official signal.

I do agree that it muddles the waters and might make some people think if you're not "registered disabled" then you aren't disabled but luckily govt offices know this isn't valid and that's where it really matters.

There is in the world of visual impairments: my daughter is officially registered blind (it’s a government/legal threshold) and there is a ‘register’ kept at Moorfields Eye Hospital (you can opt out).

I think that the the new emphasis on the primacy of identity may play a part.

People hold in mind different ideas about what being disabled means. I think there is a continuum, at one end it's seen as an identity and at the other, an objective label with criteria that people meet or don't meet, and variations in between.

I expect for some people, using the term 'registered' seeks to convey that they have had their disability recognised or validated against a set of criteria.

I think that a challenge of having words that have traditionally been used to reflect material phenomena (such as sex referring to one of two reproductive roles that human bodies, if typically developed can perform) being used to denote subjective phenomena (a feeling that one may have linked to beliefs about what it would feel like to be born as someone with a particular reproductive role, or none at all, or something in between). It leads to those who take up the material definition to want to distinguish themselves from someone who takes up the subjective definition.

There is often a conflict between those who don't want the two to be distinct from each other (saying this is exclusionary) and those who do (saying that those who don't meet the objective criteria don't fit in the category).

I think this is playing out here. Some people object to the idea that disabilities are 'policed', especially by those who don't themselves have a disability (eg I identify as autistic and nobody else has a right to say I am not). Some people say that autism is a diagnostic label and whether or not you meet the criteria is determined objectively through observation and assessment.

I would argue that aspects of identity and meeting/not meeting observable criteria are not the same thing and so different words or labels are needed to capture the difference. Without this, you will have people using prefixes or additional words to clarify the difference.

I always think of the term as meaning the person has consulted a doctor and had a diagnosis rather than just having annoying physical issues which can cause problems, such as stiff joints caused by age, but hasn't sought diagnosis.

I think it's a mix of old fashioned terminology from when people did register but now most likely because people have a diagnosis and then get benefits ie PIP on the back of it.

Personally I find it meaningless.

I think it's annoying too but I'm more annoyed at the fact that so many people are disabled yet the government has decided that the legal definition isn't enough according to their stupid PIP assessment system. Look at the free prescriptions for people with life sustaining treatment for example- on the one hand you can be determined significantly disabled enough to need this free prescription certificate (signed off by a doctor) but on the other hand not disabled enough for PIP. It's not about people getting money either where PIP is concerned (let's face it, it's a pittance compared with true costs of disability) - it's about all the other help/doors it provides access to.

Registered where, with whom, do you get a card in the post?

You can do. My son has an access card. We paid £15 for 3 years and many places accept this under their "registered disabled" schemes to accept he needs certain assistance.

So although there is no disability register if you have a disability technically (in the loosest terms!) if you have a blue badge, PIP, access card or even registered as having a disability through your GP surgery etc you are "registered".

It just helps people to get the fact recognised and sounds more formal.

Shame disability isn't treated seriously enough people feel the need to validate it really.

I agree. There is no such register, and I hate the term. Registers are for sex offenders.

Agree with you. If you’re “registered disabled” it’s because you’ve asked to put yourself on your council’s register. It’s just a fact.

Yanbu.

And I have changed all the policies at work and at the charity I volunteer for to remove that wording.

I am disabled. I have the protection of the equality act. But I am not registered anywhere - I am a high earner (can work from home) and don't need benefits and I have a fluctuating and rare condition so can't face the hassle of a blue badge application.

Yes I get free prescriptions, am often bed bound, but most people with my neurological condition get rejected by pip because it is poorly understood by GPs never mind anyone else.

But ‘registered blind’ IS a legal and government definition: disability is not a one size fits all.

In the world of vision impairments, you can receive a certificate of vision impairment from your ophthalmologist which certifies you as either sight impaired or severely sight impaired (blind). With this certificate, you can then be registered with your local social services as vision impaired. This then can help you with support for independent living/money reduced from tv license etc.

so it is a thing in the VI world. But I didn’t realise it wasn’t a thing otherwise.

@YomAsalYomBasal I think the nurses on the NMC register may disagree with you!

HCPC register is just as offensive to me I object to being referred to as "on the register" for either disability or my work. I think it needs new terminology.

@YomAsalYomBasal 😁

I wear a hearing aid. I don't class myself as registered disabled as I don't get any benefits however I am entitled to buy a disabled persons railcard. I have a hearing disability.

You know that a diagnosis can take many many years and 'consulting' s doctor means nothing. You then need a referral which is often not given and once referred, you enter waiting lists which are years long for many conditions.

If you get PIP/DLA ie registered you can get ( or at least apply for) reduced council tax, CEA cards, get discounts to some attractions.....

PS I'm not @quisensoucie I'm just sticking my nose in.

@RattlewhenIwalk And I have apologised for being wrong!

Registered blind is a specific thing.

Disability that is protected under the Equality Act (and therefore the correct basis for any policies) is far broader than the criteria for PIP etc.

I've never heard the term but I suppose people use it so that their disability is taken seriously. They are probably used to having their disability questioned and invalidated. I don't know about the DWP but I know plenty of people (in real life and online) who happily question someone's disability or the extent of it without knowing the first thing about it.

I'm disabled myself and don't use the term 'registered' but I have to ask why on earth you worked for the DWP if you hate the benefit system?!

How do you know there's a surprising number of people who are self diagnosed? Do you have access to everyone's medical records!?