If you're in the UK, much of the news is currently dominated by the abolition of Disability Living Allowance (DLA) and replacing this with Personal Independence Payment (PIP). I am going to assume people reading this basically know what DLA is, and a little bit about the proposed changes (otherwise this post is going to be too long). For this reason, the rest of this post is aimed at people living in the UK.
In this post, I will focus on why do Deaf people claim DLA? Exactly what is the additional expense? Over the years, I've seen much commentary from Deaf people should use it to pay for interpreters only, to it is bribe money and it is not a rights based benefit. And so the long list goes on. More to challenge this below.
What does the law say?
The enabling Act for DLA is the Social Security Contributions and Benefits Act 1992. The relevant part for DLA is s.72.
he requires in connection with his bodily functions attention from another person for a significant portion of the day (whether during a single period or a number of periods
This would entitle you to get lower rate of DLA.
frequent attention throughout the day in connection with his bodily functions
Which entitles someone to claim middle rate DLA.
The difference between the two rates, being the frequency of attention which needs to relate to body functions. How you get that attention, is part and package of someone's independence. No one size fits all.
That is the law, there is nothing in the above legislation to say that DLA needs to be spent on interpreters. Parliament has not prescribed anything as to how this money should be spent. The confusion starts around Cockburn v. Chief Adjudication Officer and Another and Secretary of State for Social Services v. Fairey (1997) which talks about interpreters. Unfortuntely, those less versed in law take this to mean it is the parameters of what DLA is rather than proving a specific point of law and circumstances that was before the court.
What is attention? And more to the point, what is additional expense arising out of attention?
Here I'm going to write about myself, because it is easier. I claim DLA and I also live in a rural area. Where I live, if a hearing person wants to socialise - you know maintain their basic wellbeing, they walk to the local pub. Within 5-10 minutes you have a choice of eleven pubs, five sports clubs. Or they go to church (churches in this area provide community functions). Or join a local society. Or they take a class at the local sports centre. Or chat to locals on the street. Total cost = usually 0p, just walk there and more importantly interact with others.
Not a single person in my town (apart from me) is able to use BSL. Which means I cannot access anything. Zilch, nadda. Services providing social orientated activities is so small, that it falls outside the scope of legislation of being "reasonable" to make adjustments in respect of communication support.
The nearest interpreter to me - who is able to deal with Welsh place names amongst other things, is a 150 mile round trip. And not doable via public transport. In other words, transport costs which are astronomical on any interpreting bill.
The last social accessible function in my county was in October 2010, and a sixty mile round trip. The only social event before that which I am aware of being accessible, was in 1997, i.e. fifteen years ago and thirty miles of travelling.
Theatre wise, there has been TWO accessible performances 'local' to me in Wales, IN MY ENTIRE LIFETIME. One was last month (which was actually in England but only 100 miles!), the other was two years ago (sixty miles).
There is a deaf and hard of hearing club in town - meets once a month. It is based in an old people's home and everyone there is something like between the ages of eighty and one hundred and something. They are newly hard of hearing, and are interested in learning how to lipread. I've only been once, they ran a lipreading class. Nothing wrong with that but apart from being polite, I do not have anything in common.
Deaf club. Nearest one to me is (was?) fifty miles away. Once a month. Got there, OAPs sitting round the room drinking tea, speaking. Deaf people - there were three. They watched television. One hundred mile round trip to watch tv, no thanks.
The underlying theme here is isolation. To combat this I need to travel. Some people might say, free! Deaf people get free transport, what are you complaining about? For me to get to say, Cardiff on the bus it would take me four hours and twenty five minutes. One way. If you get the first bus of the day, you arrive in Cardiff at 1210. The last bus from Cardiff leaves at 1255 - leaving you with a whooping 45 minutes in Cardiff. Public transport wise, the only viable option is you stay overnight, and necessitates a stay in Cardiff (costs money).
If I got a train (cost £40+), I live ten miles from the nearest train station (obviously I need transport to get to/from). The journey time then takes between five and six hours one way. The latest time you can leave Cardiff using public transport (to get home) is 1430. Yes that's right, half past two in the afternoon.
The buses to everywhere finish at around 5.30pm and run every two hours. Not viable if you need to be there for say, 6.30pm. There are some parts where I live, the buses run once a week.
So free public transport is not a viable solution, and there is a need to pay to get somewhere (and usually by car, as bad as it is environment wise).
For a service to come under the Equality Act and to provide access for me, they need to be big enough to absorb the cost of paying for an interpreter. In legal speak, for the cost to be 'reasonable'. This means I've approached bigger service providers outside my immediate area. Not because it necessarily is my first choice of place to attend, rather it is the nearest place where I get the chance to even feel like I'm part of society. When such people have booked and paid for an interpreter, there still leaves the issue of me getting to venue with the interpreter. Travel is not free and DLA is towards paying for interaction others take for granted. Hearing people around me do not have to absorb this additional cost just to gain meaningful interaction with humans.
Deaf people living in rural areas tend to spend money on travel, just to maintain basic wellbeing. Far from the stereotype of boozing it up in Blackpool, it is just basic human contact. And it happens every few months because practicalities can be through the roof.
So DLA allows me some financial independence to manage my own needs. DLA is not perfect, it doesn't solve anything but it is a damn sight more than nothing. And it can mean the difference between existing (or being alive) and having a basic life. There is only so much isolation any human can tolerate. Here I am adapting my behaviour just to maintain some contact that other people readily take for granted. That chat in the street, your local pub, community centre or whatever hearing people do but will not even notice.
DLA is not there specifically to pay for an interpreter. If people want to use it to pay for an interpreter or communication support then good for them. However, there is nothing prescribed in current legislation towards this and each person's attention will be different. The point is autonomy.
On a broader note. Deaf events, e.g. North / South Wales Deaf Golf - could be said to be an example of wellbeing. On a superficial level it might look like DLA is party money. However, the reality is this provides exactly the same function as hearing people going to their nearest golf club (a couple of miles down the road). Deaf people have to travel to achieve the same (petrol, hotel). Socialisation matters as a cornerstone of wellbeing, without which then it just becomes a dent not only in mental health services but more people unable to work (due to mental illness). For the record, I don't play golf.
Another thing I would like to point out here, many people frame Deaf life on the reality of what happens in London. Newsflash: the M25 is not the parameter of the UK. What is the norm in London, is not the reality everywhere. If you live in London it is extremely easy to live in a bubble. This isn't just limited to social activities but extends into employment and training. Within London in part there exists a deaf diaspora and there is somewhat a critical mass, which makes deaf experience perhaps unique. Policy written by deaf organisations can be very skewed because of a London bias, which ultimately hurts those living elsewhere.
If you're still not convinced, here is some questions (from a deaf perspective):
1. If you were a hearing person, might your income be higher? Yes or no.
2. Not had the chance to negotiate the a price for something (car, building work, whatever) because it requires spoken English, and it is easier just to pay up? i.e. you end up paying higher? Yes or no.
3. Missed out on educational opportunties, because of lack of access? Knock on effect for the rest of your life (you know, you can't change those grades, from er, twenty years ago when there was no access). Yes or no.
4. Been ripped off by something or charged higher, but not challenged because communication enters the equation? i.e. you pay more. Yes or no.
5. Travelled somewhere (train perhaps) to meet someone you can communicate easily with? To meet someone who 'gets' you? Or just to get a fix of someone who can use your language? Stayed over somewhere too, the journey isn't doable in one day. Yes or no.
6. Paid a higher broadband tariff because you're online more (maybe need to use BSL)? Yes or no.
7. Missed out on networking / experience opportunities, say the local pub or local society. Knock on effect, you don't get offered an unadvertised job or be the friend of e.g. a local plumber (cheap rates)? Yes or no.
8. Had to drag along a local family member / friend with you, to assist with communication. In the car, this is extra weight in petrol, or paid an additional admission ticket? Yes or no.
9. Your car has broken down and you received a large bill because you didn't hear the engine making a noise? Yes or no.
10. Heating has been playing up for weeks, but you were totally unaware of it? Yes or no.
11. You flooded the entire house, because you left the tap running? Perhaps the ceiling caved in. Yes or no.
12. Checked your written English for a long time afterwards, to check you've not made some obvious mistakes. (When you could have been doing something else constructive, including earning money). Yes or no
13. You spent lots of time campaigning, just to get basic no frills access. You know, please can I have an interpreter, subtitles or please can you provide another means of contact other than the telephone. Also because you've had enough, you've asked your friend/family to help arguing or you might have sought out local advice services. (Who pays for this time?) Yes or no.
14. Some random person keeps insisting on calling you on a voice phone. Maybe you spend a long time tracking this down or trying to stop those calls. Yes or no.
(There's more I can think of but will stop there - people get the picture).
If you're answered yes to any of the above, then there is an obvious economic impact to who you happen to be. I could get into various arguments here around Deaf people as an alternative existence, however, when it comes to standard of living your benchmark is the local society you happen to live in. Whatever way you look at it, DLA is a welfare benefit and is around absorbing the cost of the need for attention. Attention doesn't necessarily mean an interpreter, it can mean going somewhere to get attention to suit you (language and culture or accessibility in non benefit speak).
Any application for DLA would not succeed on the points above, you need to prove attention is frequent throughout the day which relates to a body function. The point I'm trying to illustrate here relates to financial inequality. Deaf people happen to absorb the majority of the economic implications around inaccessibility - no DLA does not financially compensate properly any of the above plus more. The question is, should the government make a contribution? And why is it in society's interests to do so?
This of course is going to change, the government wants to reduce the number of people claiming DLA when this changes to PIP. More about that, perhaps, in another post. Here there is a need to just spell out economic disparity, far too often overlooked and frowned upon.