What disability issues need addressing most in 2017?

Fundamentalist

Hi from Fm. Do the deaf suffer from misophonia? I don't know, they certainly wouldn't be affected by noise, that's for sure but it does also have visual effects too making some visual things unbearable. So I suppose some deaf folk could be affected that way. Whenever anything badly affects me it makes me really furiously angry and it constantly happens so I never get to properly unwind. How can I when it's the so-called "feelgood" stuff that causes the aggro in the first place. Most people who have a dreadful time with something can go and watch some comedy or socialise with friends or family but that's just not possible with me, it would only massively exacerbate it and furiously wind me up even more and provoke me to really serious aggression which is what frequently happens and I'm sick and tired of it absolutely every day. And it really infuriates me when I see just how many so-called "professionals", including lots of disability specialists have never heard of such conditions when they should, it's their job to know. Just what kind of training do these people have? Have those that train them never heard of it either? This is why I joined this site and I've just written a rather long and detailed email to another disability outfit the other day to explain it to them. And believe it or not even one so-called "approved professional" that the police use when they arrest someone on a 136 order had never heard of it either and he of all people should, they really need to. I'm just a nobody and I shouldn't have to try and explain it to such people, it should be in their training, that is absolutely crucial!. So far I've only met one such person who has heard of misophonia so this is why it really needs to be properly recognised as disability and so does being far too hot as this latter condition can seriously immobilise a person as it often has with me. Sometimes I've been so brutally and massively overheated I literally couldn't move for absolutely ages. In fact I once went out this time of year in 1999 when it was only 4 degrees C and I had to strip to the waist and sit on a bench for absolutely ages and I STILL absolutely could NOT cool down! Eventually I managed to put my T shirt back on but I couldn't wear any more until the sun went down! How about that!? Yet far too many keep referring to frying HOT climates as "paradise", they must be out of their tree!. That is deadly serious extreme disability and stupid transparent roofing only massively exacerbates it, it's definitely NOT all white sticks and wheelchairs as far too many still think. Fm.

MDonoghue

It's hardly surprising you feel angry, particularly with professionals who should know better. As for cooling down, surely someone out there can help in some way. When I become overheated I put a couple of ice cubes on my wrists, although I'm pretty confident that you have tried all sorts. I can only wish you luck. Perhaps someone could design a flag that one could identify with, and associate with Misophonia.
 

Chris_Alumni

Sinead on Twitter has commented: "Lack of support and how hard it is to get the support you need and funding for it."

bendigedig

Ive been reading a lot of peoples posts.

I'm noticing that there are a lot of peopke out there like me that have been sh@@ on by the establishment.

I have also noticed that there are others like me that feel very pasionately about the wrongs that we are not only having perpetrated against ourselves personally but also those perpetrated against others. 

I kind of knew how bad things were getting by what my family alone has been through.  Hearing other peoples issues with the establishment has served to crystalise my desire to try and do somthing to demonstrate my oposition to what we are being subjected to.

I am nowhere near London but I am Mobile...   I am willing to protest, take direct action etc.  If anybody has connections to activist groups or wishes like me to speak out or even take action then please let me know.  I know some are more able to do more than others.  Im willing to do what I can.. Id be proud to stand in solidarity with anyone who wishes to stand up to the errosion of our rights and qualitiy of life because of the greed and ignorance of our glorious leaders.

I would be delighted to hear from you. I dont have any ideas or suggestions but Im willing to speak out and take action in some way.  I have probably now become subject to eaves dropping from GCHQ be warned!

SAMW112

I MOVED FROM LIFE LONG DLA HIGHEST RATE ON BOTH TO PIP HIGHEST RATE ON BOTH ,AS I HAD NO CHOICE THEY THREATENED TO STOP MY DLA IF I DIDN'T SWITCH THEY SAID MY INCOME SUPPORT WOULD NOT BE STOPPED THEN MY INCOME SUPPORT STOPPED NOW MY HOUSING BENEFIT I AM NOW WITHOUT MONEY EXCEPT PIP WHAT SHOULD I DO I AM EXREAMLY ANGRY AND LOST NO MATTER WHAT I DO IT GETS WORSE HELP !

bendigedig

@SAMW112

Im so sorry that you are in this situation.  I, like you am very angry at what is going on.

What we need is sombody to speak out.  Sombody who is respected and has a bit of clout.  

This is happening to too many vulnerable people!  People are dying because of bennefit cuts for Gods sake!

What the Hell is going on?

SAMW112

@bendigedig
know i got a kidney trasplant and coz i aint on i.s now i cant get medication to stop my body regecting my new kindney so i am f**ked 

Matilda

@SAMW112

Why has income support and housing benefit been stopped?  Suggest you re-post in the Ask a benefits advisor category.

SAMW112

@Matilda
I have 

basiclee08

One fair system were all disabled can claim and get benefits without being made to feel a drain on society. But for that we need a decent government and politicians never going to happen not in my life time thou. 

bendigedig

@basiclee08

My friend none of us are a drain on society

We are society!  This countries wealth was not made by you and/or I alone but for generations our ancestors have worked, fought and suffered under the yolk of whichever regime there was at the time.

Never consider yourself as a drain on society!  Anybody that thinks this or says this is very wrong.

A civilisation is only as good as the way that it cares for those that can not fully care for themselves.  Besides collectively, we "disabled" people make more than a valid contribution to our society on many levels.

We may not believe it is possible to achieve fair and proper governance in our life times but we would be foolish not to expect it, if not demand it

Fight the good fight

bendigedig

@SAMW112 What you are going through sounds to me like a complete travesty? What the hell are the health care profesionals doing in your part of the world? Is your GP aware of your predicament? If they are why arent they creating merry hell to ensure that you are in a "safe financial environment" conducive with recieving the proper care and medication that you require? You need an advocate and fast. You shouldnt be putting up with this bloody ridiculous situation in your circumstances! Find out if there are any advocacy services in your area. This situation is totally messed up? This sounds all wrong!

SAMW112

@bendigedig
No there aint none of that theres a help number but they work for the benifit agancey so dont help ether all they do is try to catch u out by twisting your words against you its hopeless

wildlife

bendigedig

@SAMW112

Have you had any proper adviced from a well informed specialist from this online community?

Im not qualified to give you any advice, Im just a concerned fellow forum member

Have alook at your Local Authority website.  See if you can find any information on organisations that offer support and advice in your area?

you could simply GOOGLE your local town or region (etc) and add the words "advice" and/or "advocacy".

In this day and age I cant believe what you are saying is happening to you!  Its utterly scandalous!

There seems to be a closed shop mentality with local services these days.  There are no effective National Bodies ensuring accountability.  Nobody seems to want to take responsibility for anything!  When you try and get some sort of help or resolution to an issue with a service provider the cop out is that they mire you down in an organisational complaints process.  If you survive that then the expectaition is that you will go to a governing body or an Ombudsman.

THE WHOLE THING IS A SHAM.  Its a series of blind alleys to chase a white rabbit around.

The only people getting any justice in The UK Today are THOSE THAT CAN AFFORD IT.

What we are experiencing is the increasing widening of the CLASS DEVIDE.

I really feel for you....  I wish you luck.  There must be somone here that can direct you to a source of help?

Nystagmite

- my councils' inability to make a small reasonable adjustment of sending me letters in a format that I can read. Their arguments include "because it costs us money" & "there isn't enough demand"
- support for adults with Autism. I've received no support since my diagnosis. I was pretty much told to get over it... 
- Educating people on invisible disabilities. I'm stared at if I've got my mobility cane or walked into or accused of faking it if I use disabled facilities. (disabled toilets, seats on buses, my disabled persons bus pass, etc)

htlcy

1) accessibility. It's 2017, and we've still got a terribly long way to go. Accessibility is always an afterthought. It'd also be useful for venues to list what makes them accessible; having a wheelchair ramp may be useful for a wheelchair user, but what about heavy doors/steep steps/noisy atmospheres? I think we need to expand upon what accessibility means. It's as varied as the disabilities that exist!
2) inclusions, particularly for those at schools and universities. Again, students with disabilities aren't often the top of the list priority-wise, and as a teacher in a Learning Support dept of a sixth form college, I can attest to this. 
3) More info on 'invisible disabilities'. I have hemiparesis (cerebral palsy) and a severe spinal curvature, but for some reason I always have to justify needing to sit at the front of buses/using disabled toilets. 
4) More authentic, true-to-life portrayals of disability that don't perpetuate the 'disability as tragedy' narrative, in both literature and other forms of media.

Just a few ideas! Thanks for sharing, everyone. It's so important

iza

Hi I agree with statement that indeed "invisible disability " just exist as word only. There are big numbers who even does not know what does it mean. 

bendigedig

@SAMW112
how are you getting on?

Hudo53

I think mobility needs to be looked at for the over 65s.   We are finding it really difficult to go anywhere because I have arthritis in my hands and lifing the chair into my car is really difficult, dropped the wheelchair loads of times as just cannot lift it.  Also the disability as it is with mobility, why are 65s not even allowed the reduced car tax?  So once you get 65 and disabiled you are really penalised.