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What disability issues need addressing most in 2017?

Chris_Alumni
Chris_Alumni Scope alumni Posts: 689 Pioneering
Twitter user (at)lifewithability has recently posted a poll which asks, "what issue do you think needs addressing the most in 2017 for disabled people?"

What would be at the top of your list?
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Comments

  • Matilda
    Matilda Member Posts: 2,610 Disability Gamechanger
    PIP assessment reports and DWP decision makers' reports.  Clearly, many of both are unfair, full of inaccuracies, heavily biased to make the claimant appear to be far less dsabled than their How Your Disability Affects You form indicates.

  • Angel40
    Angel40 Member Posts: 34 Connected
    Same as above. Assessments and decision makers reports. The departments/people responsible need to have a shake up. Its not fair for so many people to be treated so unfairly when they are genuinely entitled to the money. This major problem of assessors reports and decision makers lies and " bended truth" needs urgent addressing. Sorry to be so blunt but why should the disabled have to accept such treatment?
  • iza
    iza Community Co-Production Group Posts: 524 Pioneering
    Disrespect of all disability conditions. Not recognising rare medical conditions as disabilities.
  • chasnbons
    chasnbons Member Posts: 60 Courageous
    MDonoghue said:
    Lets be absolutely clear. The DWP carries out it's duties set by Government ministers. These ministers are fully briefed, indeed their priority appears one that besets all, chiefly money and cost. Disabled people appear to be way down the list, when it comes to human rights. Our society, one that encompasses our rights to have care and provision under the Welfare State, is under attack.
    We must have the courage to both raise awareness, and fight for our previous hard fought rights. Acts of civil disobedience are at this point in time , perfectly legitimate. Grab the paint.
    ''Lets be absolutely clear. The DWP carries out it's duties set by Government ministers''

    The above statement edited for truthfulness.....

    Lets be absolutely clear. The DWP SHOULD carry out it's duties set by Government ministers.

    Unfortunately speaking from personal experience..... THEY DON'T!!......

    Both myself and my MP have pointed this point out on numerous occasions to Penny Mordaunt giving exact instances with dates, times and even recorded phone calls, yet all she does is deny everything and spout the usual rubbish we have come to expect from her and her cronies.  Stating that rules are in place and the DWP follow them.  Even with the incontrovertible truth we have sent her, she STILL denies there is anything wrong and refuses to believe the facts!

    A simple Google search will also show the hundreds of thousands of people who have encountered the same problems, yet still she refuses to admit there is a problem with the 'system'.

    In my honest opinion, until the person in charge of this joke of a 'system' is actually disabled themselves, how is anything ever going to get better?  

    How can an able bodied person ever know what it is truly like to be disabled?  

    The simple answer is THEY CAN'T!

    THEY are fit and well and don't actually care about people less fortunate (though they pretend otherwise) and see them as less worthy of having the help they so obviously need, and as drain on society which needs to be removed!


  • Matilda
    Matilda Member Posts: 2,610 Disability Gamechanger
    edited February 2017
    The present Government are determined to be ruthless in cutting costs, honestly or dishonestly, regardless of how many vulnerable people they hurt.  My MP, after receiving a large volume of concerns about PIP and ESA, wrote to the then Employment Minister, Pritti Patel.  Pritti Patel's reply in effect said that the Government intend to carry on cutting PIP and ESA because taxpayers shouldn't have to fund lifestyles that they themselves couldn't afford!  The Government seem to forget that benefit recipients are also taxpayers, if only indirect taxpayers in some cases.  And the Government appear to think that disabled people are living lives of luxury on PIP and ESA!

    Yes, chasbons, the Government don't have a clue what it is like for disabled people to have to cope with life.
  • MDonoghue
    MDonoghue Member Posts: 11 Connected

    Let me attempt to clarify my original contention. Ask yourself, do the DWP lie, cheat, ignore, and abuse people, I can only speak for myself, and it's a sad yes, to all of these charges. They must accept responsibility, and be held accountable. However they have undoubtedly been given the green light, from the higher echelons of government. The buck shouldn't stop merely at the doors of DWP, rather it should fall into the arms of those in number 10. As far as representative form of government goes, it's abundantly clear that it fails to work in the democratic interest of the people.






  • Fundamentalist
    Fundamentalist Member Posts: 133 Courageous
    MDonoghue said:
    Lets be absolutely clear. The DWP carries out it's duties set by Government ministers. These ministers are fully briefed, indeed their priority appears one that besets all, chiefly money and cost. Disabled people appear to be way down the list, when it comes to human rights. Our society, one that encompasses our rights to have care and provision under the Welfare State, is under attack.
    We must have the courage to both raise awareness, and fight for our previous hard fought rights. Acts of civil disobedience are at this point in time , perfectly legitimate. Grab the paint.

    Hi from Fm. There could be some truth in that. I too agree that we might need to protest again like other disabled folk had to in the past. But if we do there must be absolute unity, we mustn't let anyone divide us because they would try. I am sick and tired of far too many things going the wrong way for folk who are severely disabled like me with severe misophonia and severe heat intolerance. At the moment we have the so-called "equality" act. And misophonia and severe heat intolerance easily meet the criteria in the equality act for what constitutes a disability but instead of things being made more equally accessible for such people it's only going the wrong way, i.e. far too many things are being done which only make things WORSE for people like me and the countless others in a similar state which in this age is totally unacceptable, The office for national statistics don't even bother to count how many folk there are like me in the UK. Folk like me are being completely ignored which is appalling especially as misophonia and severe heat intolerance can completely destroy entire lives. Near to where I live there is a shopping centre with a roof like a greenhouse and in the summer it heats up to an appalling temperature inside making it inaccessible to folk like me at such times, and to make it even worse the local shopmobility shop is in there too. Yet it's still described as "accessible to everyone" just because it level access and automatic doors etc. which is not enough, it also needs heat reflective coating on the roof to be truly equally accessible as do other similar places and there's far too many of them. Heat reflective coating alone does not make a building "too cold" as some suggest, only an overpowered air conditioning system would do that. Heat reflective coating is a simple solution which uses no energy. We need to raise more awareness of conditions like I have so I would like to urge anyone else like me to speak out and not just accept the situation as it is which is no good at all. It seems that some folk's idea of "equality" means that you have to "like what everyone else likes" and "be the same" etc. which is no good at all. Equality means fair for all. Folk can't help what they're born with. Fm.
  • mossycow
    mossycow Member Posts: 487 Pioneering
    1. Benefits need to be less terrifying and  towards those in need and not just away from those who don't.

    2. Abuse based on disability

    3. Toilets and good changing places

    4. Getting a broader range of people on TV, media etc. if people see us, it proves we exist!
  • Fundamentalist
    Fundamentalist Member Posts: 133 Courageous
    Hi from Fm. I couldn't agree more, no-one can ever properly judge anything without experiencing it for themselves, just as I being a bloke can't possibly judge something like pregnancy or pmt. Also in my experience the DWP have been fairly good to me. I think it's a bit of a postcode lottery, how well they perform possibly depends where you live. At one point they grossly over estimated how much I had in savings and they cut my benefit by £10 a week for ages and they ended up owing me over £300 and I got it all paid back but it took some doing. Apparently they got some figures mixed up because my bank took over another and the other problem I've had with the DWP is their return postal system, I now never use their reply paid envelope because it nearly always gets lost in the post so I have to use the normal postal service at my own expense. One thing I learnt from this experience is always keep all your bank statements so you can prove your transactions as you'll need to if they make a foul up like they did with me. Rather than the DWP it's some dreadfully anti-social locals who won't be told that I'm severely disabled and unable to work. Where I live there is some folk who keep balling abuse out of their vehicle windows as they're passing calling me "lazy" and telling me to go and get a job. It's them who won't be told because they're so grossly pig-ignorant. There was also a form I had to fill in for the "re-assessment" of disability and one of the things they asked me was "how does my behaviour affect others?" only that way round, there wasn't any mention of how other's behaviour affects me, oh no! So I turned it around and I told them other folk's behaviour affects me, that one works both ways! And if they ever secretly film me anywhere they'll see for themselves how appalling my situation is. And another thing they did which really wound me up was insisting that I go to a jobcentre to have my documents photocopied, they wouldn't accept my own copies. I tried to tell them that I can't go to a jobcentre because of the absolutely excruciating noise in such a place but the person on the phone at their call centre just wouldn't be told! If they ever try that again I'll demand to talk to someone in charge and I'll get them told why do you think I'm claiming this benefit?, go and look up misophonia online. Fm.
  • MDonoghue
    MDonoghue Member Posts: 11 Connected
    Fm. Yes there many instances - that correctly teach that experience - is primary in our concept of understanding. Whereas a great artist may paint a perfect apple, if they have never touched, smelled or tasted can they truly claim too know the apple. As far as the anti social behaviour directed at you is concerned, report it to the police. The chances are high that nothing will come of this, however it will be documented as evidence. I find this too be really quite shocking. Thanks for teaching me the meaning of misophonia.


  • Fundamentalist
    Fundamentalist Member Posts: 133 Courageous
    Hi from Fm. There's only one problem with reporting anti-social cr#p to the police, they just don't want to know, even if the culprit is only yards away! And this has gone on for decades with me. And if the government decide to "reassess" me, what are they going to do? I bet I can be about 99.999% sure that whoever carries out the so-called "reassessment" will have never heard of misophonia, or 4S syndrome or severe heat intolerance, oh no! And they can't "measure" it with any fancy meters or scans etc. Why doesn't someone from the govt.'s benefits department spend a week with me and they'll get a heck of a shock as would anyone normal when they see the appalling restrictions and absolutely dreadful disruption it causes me. And the TV news report so-called "disruption" when something like the southern rail strike happens or a big bank of fog grounding the planes so the normal crowd can't get to their favourite frying hot resorts, and they think they're suffering disruption, they don't know what disruption is! they should see what happens to ME every DAY! Fm.
  • MDonoghue
    MDonoghue Member Posts: 11 Connected
    Fm. You may consider attempting to record any harassment and presenting this to the police. This of course carries some degree of risk, however if you can raise the stakes, the greater the chance of harassment, the police response and the opportunity to raise awareness amongst the general public of your plight . I can't help but notice the distinctions being made, disabled, normal crowd etc, perhaps such distinctions only serve too further isolate.
  • Fundamentalist
    Fundamentalist Member Posts: 133 Courageous
    Hi again from Fm. I am going to get a portable recording device of some kind at some stage if I can find the right one which is proving well nigh impossible as now they're nearly all either USB or HDMI only which I don't need, I need one with an old CVBS output as I still use an old British TV which I refuse to part with. And even if I did gather hard evidence I bet they still wouldn't want to know, but they'll pounce on ME straight away if I fully justifiably get someone told when they started it as they always do. And I take it you've never suffered anything like really extreme misophonia like I have otherwise you would know that it means I absolutely cannot "integrate". Which is why I've lived in the same house for over 30 years and never once had any personal company round, which in my place is a virtually impossible task as I have to have white noise on nearly all the time. It really infuriates me when I read about other folk supposedly "suffering" with what they regard as really serious misophonia and then they mention they have a decent job that pays enough to support a car and then they mention their partner and going out for entertainment etc. Well how on EARTH CAN THEY?! I can't have anything like that! They obviously don't have it anywhere near like what I've got. And with some people it's no good trying to be all "diplomatic" etc. as they only see it as a weakness to be exploited for their own sick and perverted pleasure and with that sort aggression is the only thing they understand. And in my experience with authority when it comes to dealing with anti-social types it's all "defend the enemy and pick on the victim". Instead of trying to solve the problem they just become part of it.  When you're like me total isolation is a must and it absolutely infuriates me. And I read somewhere today on another "disability" site that they have a bar which they regard as a so-called "safe" environment for disabled folk. Well what absolute contradictory nonsense! How on earth can a bar be a safe place when it will be full of absolutely appalling and excruciating noise! Such a place is totally inaccessible to me as are libraries now too. This just shows how massively out of touch some people in the disability field are with reality. It's about time misophonia like I have was more well known. Fm.
  • anaqi
    anaqi Member Posts: 52 Courageous
    What issues need addressing most?

    Acess to public transport and public places, including suitable toilets.

    A fairer benefits system that looks at the person rather than a set of tick box questions.

    Public perception of disabled people.  We are not all paralympians, we are not all sad cases to be pitied and cared for, and not all people on mobility scooters are fakers and benefit cheats.

    Acess to appropriate mobility equipment without having to pay over the odds.

    Appropriate support from Social services based on needs rather than limited by budgets.

    Improvements in the NHS, better communications between hospitals and GPs. It takes seconds to send an email to the other side of thr world, why does it take 6 weeks for a consultant letter?  Better access to services such as physiotherapy and mental health services. Shorter waiting lists, 12 months to see a consultant and 5 weeks to see a GP is too long.
  • Fundamentalist
    Fundamentalist Member Posts: 133 Courageous
    anaqi said:
    What issues need addressing most?

    Acess to public transport and public places, including suitable toilets.

    A fairer benefits system that looks at the person rather than a set of tick box questions.

    Public perception of disabled people.  We are not all paralympians, we are not all sad cases to be pitied and cared for, and not all people on mobility scooters are fakers and benefit cheats.

    Acess to appropriate mobility equipment without having to pay over the odds.

    Appropriate support from Social services based on needs rather than limited by budgets.

    Improvements in the NHS, better communications between hospitals and GPs. It takes seconds to send an email to the other side of thr world, why does it take 6 weeks for a consultant letter?  Better access to services such as physiotherapy and mental health services. Shorter waiting lists, 12 months to see a consultant and 5 weeks to see a GP is too long.

    Hi, from Fm. Dead right, couldn't agree more. I'm no cheat, I depend on benefits. And I don't want pity, just proper official recognition of the appalling conditions forced on me which are currently ignored even by disability organisations who don't seem to realise such folk even exist. And there needs to be far more and better education in our schools and other institutions about more hidden and more extreme disabilities like I have, like misophonia which is not even recognised by this message field and also severe heat intolerance which makes you far too hot all the time even in the freezing British winter! I've had it so bad that there's been many a time when I literally couldn't walk more than about 100 yards or even less without burning up and absolutely pouring with extreme profuse sweat which is absolutely excruciating. Sometimes when I've gone to visit someone who lived well away from the bus stop I had to go miles early so I could sit outside their place for up to an hour to try and cool down before going inside their home. This is the kind of disability that needs to be properly and officially recognised as disability on it's own and not just as a side effect, and it's the same with misophonia which can be absolutely brutal, it's not just disability, it's absolute torture! And the Paralympics is so totally unrealistic in it's representation of disability, it only shows those with "white sticks and wheelchairs" or prosthetics etc. but absolutely no mention whatsoever of anyone remotely like me, oh no! And it's the same with the "undateables", that is so totally unrealistic and narrow. I tried writing to the makers of that show but needless to say they just didn't want to know and just totally ignored me as far too many do. And more public transport like trams, trains and planes need segregated proper quiet areas for folk who are autistic or have misophonia. It's not all about mobility and sensory problems. And of course the "tick boxes" never cover anyone like me and those in the offices have never heard of anyone like me either which is appalling. This is the kind of thing which needs dealing with in 2017! Fm.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Julie on twitter says:
    The lack of support for 18 yr old ASD pupils leaving school.
    Scope
    Senior online community officer
  • Fundamentalist
    Fundamentalist Member Posts: 133 Courageous
    iza said:
    Disrespect of all disability conditions. Not recognising rare medical conditions as disabilities.

    Hi from Fm. Dead right! I couldn't agree more. Both severe heat intolerance and severe misophonia continue to be unrecognised as disabilities which they certainly are, even a company director I once knew agreed with me on that point. And another thing that really winds me up with the DWP is the point in their letters about textphones. It usually says something like "textphone number for the deaf and hard of hearing ONLY!" Well to me that is aggressively discriminatory. What if someone who is severely autistic or someone with really severe misophonia needs to contact them and they absolutely can't stand having to listen to any of the often excruciating noise in the background at the call centre which often happens at call centres. Someone once phoned me from a call centre and the noise of the absolutely raucous hysterics in the background was so appalling that I had to tell them I can't possibly talk to them with all that appalling noise going on. So textphones should be made available to more disabled folk, not just the "deaf and hard of hearing" only. This is just one reason why more conditions and disorders urgently need to be properly and officially recognised as disabilities on their own and not just as side effects. Fm.
  • MDonoghue
    MDonoghue Member Posts: 11 Connected
    Fm. It's difficult to know where to begin, I had never heard of these appalling restrictive conditions, I find it almost incomprehensible. When I was physically fit, I would often leave the city and camp on the remote west coast of Scotland. Noise from the wind, and the waves crashing or lapping, birds calling and the occasional passing car.  We spent ten nights on this deserted beach, on our return to the city, we found the noise almost unbearable, strange as it never bothered us before. It took a couple of days to readjust to painful noise. Do people who are deaf - suffer from misophonia ?

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