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We want to hear from you: please tell us about your experience of the online community.

Have you ever felt excluded?

Chloe_Alumni

Scope have released a brand new campaign!

Half of disabled people feel excluded from society and many say prejudicial attitudes haven't improved in decades. With research finding that two in five disabled people feel undervalued and disconnected from society, something had to be done.

Living with a disability can be incredibly difficult at times, but we would love to hear your experiences. Have you ever felt excluded from society?

By sharing every day experiences we hope to highlight areas where people feel undervalued and disconnected from society, but also what changes you believe need to be made.

Scope are focusing on five key aspects and want to promote disabled people living the life they choose. By sharing your story it will others to see they are not alone.

These areas include:

Attitudes
Work
Public transport
The right care and support
Access to digital technology.

There's something everyone can do to be a Disability Gamechanger so join us today to end this inequality.

Have you experienced any inequality around the five key aspects? What changes would you like to see to society?

Let us know in the comments below!

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Comments

elbest

Yes I have definitely felt excluded or just plain overlooked when it comes to care in the NHS. I have recently been sent to physiotherapy by a rheumatologist as I have Ehlers Danlos Syndrome and I am struggling with pain in my joints, she suggested that by improving my muscle strength it would help with pain. Went to the Physio appointment which was 4 months later to be told that basically here's a few excercises go away we can't do anything else for you. No follow up nothing, it's as though because I have a chronic condition they don't want to know and don't want to spend the money. If I was rich I could afford my own Physio but because I have many problems and live on my own with my son, I am struggling and this just add to feeling disregarded and forgotten by health providers. Doctors won't prescribe stronger medication as I don't think they understand the condion so it is a constant battle to stay upbeat. There needs to be more research into hidden disabilities and more care and understanding by professionals of these conditions.

Oh goodness yes. Even somewhere as simple as a hospital - everything is verbal. I’m 30, have a hearing impairment and still need to take someone to appointments because I never hear my name being called. Last time someone else went into my appointment because they misheard And I didn’t realise it was my name ??‍♀️
Is it so difficult to have a screen in hospitals like at a GPs office?

leeCal

Hey! This thread is entitled “have you ever felt excluded?” I posted “prayer is free” and it disappeared marked as spam! Since when is suggesting saying a prayer spam? And so I’m excluded!

[Deleted User]

No formatter is installed for the format not-found

susan48

I’m sure most of us on this site has felt excluded. It’s usually a daily occurrence sadly.
Theres lots of reasons as to why.
I feel excluded but my anxiety makes me exclude myself from daily life, if that makes sense.

@leeCal, not sure why your prayer posts disappeared but if praying helps you then I’m glad.

Ami2301

I was always the chatterbox at my previous job, always getting involved with the team (socially) but when I started to lose my hearing and I asked if they could repeat what they had said they just ignored me. It was horrible especially when at break times a few of us would have a drink and a couple of biscuits and I would see them laughing but they didn't involve me anymore, they hardly tried to speak to me anymore.

DaniCon

I have very much felt discriminated against in the care I receive from the NHS. As someone with long term multiple health conditions I find that there is less empathy and a willingness to engage compared to someone presenting with the same symptoms for the first time. Pain levels and symptoms are expected to be tolerated, and referrals for support such as counselling or a dietician are bounced back.

Liam_Alumni

Hi @leeCal,

I'm sorry to hear that your posts have been marked as spam. I've looked into this for you and this should now be resolved.

Sorry about that!

newborn

Err. .... A better question might be Have you ever felt INCLUDED?

If you live long enough, you can also reach this jolly question ......Do you think ANYONE wants any older person to stay alive?

Chloe_Alumni

Thank you for this @newborn! It too is important to be positive and look at the alternative. The phasing of this question is in line with the new Scope research

debbiedo49

Yes. In my case I cannot travel independently due to my mental health, and yet have only recently been awarded pip standard rate mobility. I feel excluded when the NHS expect me to travel to appointments without regards to my issues. I find the NHS is not inclusive for folks with chronic illnesses or mental health issues and I have to beg for help with both mental and physical health. I feel excluded from access to proper help and hope for recovery. Any decent help I’ve had with my mental health has been from self referral to charitable organisations and their resources are very restricted. People with invisible illnesses are excluded from society because most people don’t understand what they are. This can make the person feel isolated and alone and less likely to want to participate. That’s why raising awareness is so important.

newborn

When DDA came in, it was the most beautiful piece of legislation in u.k. history. Every word had been thought over and fought for, for decades.

Sadly, the chattering classes had/have attention span for only one idea at a time, and in those days, they were still belatedly considering themselves trendy original thinkers if they heroically stated they agreed with the 100% in u.k. who opposed race segregation in South Africa or southern u.s.a.

They could grasp that a fellow man (not woman) might be treated as an equal man in law, even with a different skin colour. Many M.P's were gay, so they could even, gradually, be brought to concede that homosexuals, too, might be considered equal.

Women, Disabled or Older People, might vaguely be assumed to be slightly similar to real, ( M.P.) humans, just as long as merely making empty statements that such people are equal won't make any difference to any M.Ps, their behaviour, their friends, or their wealth .

In other words, it was exactly like making meaningless proclamations about Southern U.S.A, or South Africa, from the unaffected safety of their own cosy Palaces in Westminster.

There is one equality, and it's name is Racism. Racism, alone, is enforced by authority, with criminal proceedings.

Ageism and Disablism will be encountered daily. The victim is required to become wealthier than the offending organisations, including government, in order to fund personal pursuit of every daily breach, through every stage of court and appeal.

Are premises, including shops and new housing, and stations, inaccessible, through steps and through wrongly adjusted door closers? Is planning consent for disabled/elderly hostile built environment still given, , all these years after the DDA? Alone, the individual must make every instance the centre of a personalised complaint, then sue the government, the council, half the shops, services and organisations in the country..

Is unecessary background noise, especially musac, poured over every BBC programme, especially any nature film? Does imposed avoidable noise make normal shopping and cafes intolerable to those with hearing loss, ptsd, autism and other conditions? Every individual is required to pursue legal enforcement, all alone, unfunded and unaided and without support or advice.

While old people are routinely described as 'a burden' ,depicted as rich, selfish, home-hogging bed blockers, is u.k. state pension the world's worst, and far below the minimum to sustain life? Are old people stereotyped and mocked e.g. in Mrs Browns boys, , or One Man Two Guvnors?

Are public and charitable services such as counselling available only to those who can journey to a particular building, instead of on the phone? Do medical providers use all available car parking for their own staff, not for disabled excluded potential service users?

Is it reasonable and proportionate that such a state of universal disablist/ageist practice is regarded as trivial by comparison to a perceived racial slur?

Sir Trevor Phillips, when Chair of Equalities, pointed out that "Disablism is invisible , universally practiced, socially accepted, and institutionalised, and, in its effect on peoples lives, is, in many ways, worse than racism. "

He could have said the same about Ageism, which is all of the above, plus, virtually, being encouraged as government policy and favourite fashionable habit of the chattering classes .

Andy Rickell of Scope wrote that disability organisations made a mistake by splintering, and a bigger mistake by not aligning with older people, because the overlap of interests is so great, and the numbers among the voting population are overwhelming.

Scope trying to attract attention to a few aspects is not as good as united lobbying for a Ministry of Elders, Disability, and Equalities, with a prime purpose of making all Equalities Equal. Therefore, if a person can expect the police to attend to an incident when someone uses a racist insult, s/he should equally expect it to be a police matter when s/he is badly treated, unable to access goods or public or private services, segregated into 'care' ghettos, or social 'apartheid' .

A legal 'remedy' which is blatantly impossible for the Discrimination victim to exercise, is no remedy at all, thus in breach of national and international human rights law.

newborn

@Debbie do is entirely typical, yet the beaurocratic tick box designers think she does not, or should not, exist. They have neat conveyor belts to process a range of correctly conforming stereotypes.

Power is heady. Power is invariably liable to be abused, normally with self righteous victim blaming by the power abusers. Those in power to control funds and services can only be human, therefore can only reassure one another they have a perfectly good system. It is 'their' system, so it must be right.

If inconvenient beggars for help go and fall off the conveyor belts, those beggars are themselves to blame. If supplicants don't grovel gratefully, they deserve refusal. If they cannot fit any of the rectangular tick boxes, they are wilfully, deliberately, failing their obligation to comply, and must be harshly punished.

@Debbie finds it unreasonably difficult or impossible to access services due to unlawful failure of service providers to adapt to meet the needs of excluded service users or potential service users. Agraphobics, claustrophobics, and many other disabled groups are directly discriminated against. Other older and disabled people are indirectly discriminated against because their carers are untreated, due to not being able to leave them .

Recent radio 4 journalists, investigating Charity, have described how Advocacy service charities are swallowed by what are, in effect, quangos. Syphoning all available funding, the quangos become the undercutting contract winners, ostensibly providing the bare minimum statutory obligation 'services'. They comply with whatever the paymaster authority demands. Instead of helping, often with experienced volunteers, they tick boxes restricted to what the L.A. wishes. If the social service team chooses to refuse help to those who don't beg pleasingly, and don't fit neatly on the limited number of conveyor belts, then they are excluded from help, or hope.

newborn

@pin and @,ami both described being unlawfully discriminated against, one in services, one in employment, by reason of disablist practices. If the same thing happened because of racist discrimination, prosecution action would have been taken by authorities.

Incidentally, the t.v. programme 'impossible engineering' has invented the wheel, for people being left out due to hearing loss.

But, foreign language translation is considered to merit priority funding, out of sheer terror of the word 'racist' (only in u.k., not in other countries including e.u.)

Meanwhile, nobody fears the word 'disablist', because the law is officially unenforced. Therefore, who could be bothered even to publicise the two, cheap, smartphone apps. ? One is to make deaf people safe from traffic, by translating sound to a vibration warning. The other is to end exclusion by providing instant translation of conversation into text, so everyone in a group can be equal.

debbiedo49

@newborn I saw that TV series it is epic!

Topkitten

I began to get ill at the age of 49 and have noticed increasing exclusion as my age has risen and my condition been diagnosed as chronic. In fact, I cannot remember the last time I was included.

I used to be a husband and father, played sports and organised teams at different places, such as pubs, and was always right in the middle of things. Up until recently I was going out with other healthy people but few would chat much with me, I guess they thought it might be catching. Now I cannot go out at all and feel so much worse.

The systems in place are supposed to provide help but again I am excluded because I am considered a troublemaker because I don't accept poor support without creating a fuss. Thanks to Mental Health, Orthopaedics, Social Care and GP surgeries I am now alone and sat if front of the TV 24/7 and my only visitor is a cleaner that I pay to come round. Even my family now excludes me from what they do and have done so for 3 years or so, despite my having some mobility until the last few months.

It is disgusting that we get treated so badly (when we get help at all) and are left to sort out everything for ourselves.

TK

axwy62

Once upon a time things were improving. After the DDA, suddenly everyone was thinking about how people in wheelchairs could get into their buildings and 'hearing loop' available signs appeared all over the place etc etc. Things were by no means perfect and a lot of disabilities were still ignored, but we were at least starting to move in the right direction.
Then along came the big banking crisis and all of a sudden every phrase uttered by politicians and headlined in the press which mentioned 'disabled' or 'chronic illness' also included the phrase 'benefit scrounger'. Link the two often enough and you end up with the situation we're in now.
Even sympathetic members of the public believe that all disabled people claim benefits and at least 20% of disability benefit claims are fraudulent, no one believes that a disabled person could possibly earn enough to buy their own car, many people in my (other wise very safe) area no longer display wheelchair stickers in their vehicle to avoid consequent vandalism, I've been abused as a scrounger for claiming free prescriptions (which I get because of a health condition, not because I'm on benefits) and I've been told that someone who can walk from the rear of the car to the passenger seat obviously only uses a wheelchair because they're lazy.
Even the people who are supposed to help are no different. My previous GP is the direct cause of some of the damage to my spine since he repeatedly told me there was nothing wrong with my back and it was all in my head. When my husband paid for me to be seen privately, it turned out I had three fractures, one of which had damaged the nerves going to my right leg so badly that I have never been pain free since. I've been passed between various hospital departments all my life because I have a list of issues as long as your arm to the point where I was asking if the latest health professional wanted highlights or the full top to toe, and as soon as the list went beyond 3 or 4 problems you could see the disbelief in their faces. It's taken 56 years, but I've finally been diagnosed with Ehlers-Danlos, which explains every single one of those problems. It's of no comfort to know I was right all along.
For anyone who is just reading the first and last paragraphs, I can summarise by saying I'm sick to death of being treated like a second class citizen by the majority - I have to say, including some disabled people, and having to fight over everything from access to trains, planes and ferries to being able to use the self-checkout in the supermarket, so do I feel excluded? I can't remember what being included feels like.

TimMusgrave

susan48 said:
I feel excluded but my anxiety makes me exclude myself from daily life, if that makes sense.

@susan48 - it totally makes sense. I'm sure many of us are aware that we can exclude ourselves.

feir

I'd been housebound for over a year, the ultimate in exclusion from society.

I'm reliant on taxis to go anywhere, including short distances i could walk to. My bf has a car but this also means reliance on him as well and he lives an hour away so it's not feasible that i can rely on him (although eventually we're gonna have to live together or at least nearer each other).

Tracey1968

I am quite newly disabled and have experienced exclusion most days since. I'm a pretty strong character so can deal with most of it head on. The worst culprits are the disability services! If you don't fit the box then they don't want to know or help. I didn't want a mobility car, as I had recently bought an appropriate car, yet they wouldn't support me buying or hiring a rooftop hoist for my wheelchair. The conclusion was to find £4.2k. nice 1 lol