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Have you ever felt excluded?

Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
edited October 2018 in Disabled people
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! 


  • PinPin Member Posts: 139 Pioneering
    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?
  • leeCalleeCal Member Posts: 4,125 Disability Gamechanger
    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][Deleted User] Posts: 19 Connected
    The user and all related content has been deleted.
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    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. 

  • Liam_AlumniLiam_Alumni Scope alumni Posts: 1,113 Pioneering
    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!
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    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 :)

  • newbornnewborn Member Posts: 720 Pioneering
    edited August 2018
    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.     

  • newbornnewborn Member Posts: 720 Pioneering
    @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. 
  • newbornnewborn Member Posts: 720 Pioneering
    @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.
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    @newborn I saw that TV series it is epic!
    I am a fibro warrior !💜♏️
  • TopkittenTopkitten Member Posts: 1,288 Pioneering
    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.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • axwy62axwy62 Member Posts: 140 Pioneering
    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.
  • TimMusgraveTimMusgrave Member Posts: 15 Connected
    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.
  • feirfeir Member Posts: 396 Pioneering
    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).
  • Tracey1968Tracey1968 Member Posts: 2 Listener
    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
  • Computer1Computer1 Member Posts: 1 Listener
    My exclusion  is when filling in forms online there is no space to put any extra digits to accommodate the 18002 in front of my usual phone number which allows me to use the text type system because I am profoundly deaf.Therefore when these people phone on the ordinary number I cannot hear them, they have to go through the operators so they can type up the message on my screen. The worst time is when I deal with car ins/breakdown, it is so frustrating. 
  • SHEBASHEBA Member Posts: 13 Connected
    I am sure that most people with disability,whether ,physical ,or otherwise have been excluded,for no reason.Most people already struggling ,do not need ,judgemental ,or ignorance ,which seems rife ,it seems to get worse,with the internet [info ,available at a a click.] you would think people would be more informed,yet it seems to be being used as a means of judging others ,in fact ,the media ,in general ,are demonizing the disabled community,aided by the Tory hate incitement.My family,[siblings] have always shunned me,for being me,others ,have used me ,until they have "better",options.I have been loyal to those who I thought were friends,but they see this ,as a means of taking advantage.Even in the NHS,I have tried ,for years ,to get treatment,/see a consultant ,with no success ,after seeing one ,since my teens.Since I lost my remaining parent [and my pet/friend Sheba],all support has disappeared ,I am stuck in ,most of the week  ,with hostile locals,no G.P.,or visitors.I agree ,all the harassment ,from the DWP,adds to the anxiety ,and can cause people to become more ill.I feel for all the people ,who are experiencing prejudice /abuse,or being judged ,by those ,who know nothing about these issues.
  • JulestheBatJulestheBat Member Posts: 16 Connected
    The answer is 100% yes
    I feel excluded from society period. My pain keeps me inside and I rarely venture out apart from appointments. 
    The NHS pain clinic I went I found patronising. I really did try for 2 years and got knowhere. Which was really sad. 
    With my health the only way I can see of working again is from home and online. 
    Since Ive stopped working friends have dried up, family events are harder as Im at an age where Im the mad Auntie. And I get tired easily. So my illness and diaabilities exclude me in one sense. 
    Im a part time wheelchair user and the diffrence in attitudes from when needing and not is horrific. People are either overly helpful or overly hostile when Im in the wheelchair. Ive had my chair kicked while queing, being pushed and going through a crowd of people and been commented on. Though people being helpful out weighs the hate, It stops me from wanting to use the thing that can give some freedom back. So I dont often go out even to the shops. 
    I cant believe the sheer hatred thats projected on to the sick and disabled in society.  
    So I feel excluded from society in many ways. Its actually a pretty deep question, I could go on longer. The answer is yes 

    " If in doubt, Freak em out" - Sharon Needles 
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I feel that the attitude towards the disabled is that they are a drain on society due to the bad press we get about benefits. This wssnt always the case. Its like saying a bad word when you mention disability and benefits. I hope this changes in the future as we all deserve to be here.
    I am a fibro warrior !💜♏️
  • Piglets12Piglets12 Member Posts: 17 Connected
    Yes. Me it's with my church. There's a meeting soon as I been ask to say something from a adult with autism and sensery to help make church more accessable to all! But I feel left out I can sing and play guitar I can read and pray I asked about them things I saved and babtisted. New folk come in either from a church or become christains and on rotas why not me I just as good as anyone. I feel left out. My last church included me in everything but not at my new one. When I moved it's hard  any other suggestions I could say about being included we having more accesable bibles. For those that can read that on order I suggested a sensory friendly room for adults and carers with scream and head sets to lissen to the service and disabiled loo to also included tissues and hand driers and there is a lot of kids with needs. They self expectant and won't use prospects to educate. What would make church more accessible to hidden and physical disibilites? I will suggest them we having a lift out in!
  • mamajayne69mamajayne69 Member Posts: 7 Listener
    I have fibromyalgia and severe ME and wheelchair bound since 2014 after I had sepsis and since then I can't remember when I have felt included. I can count on one hand the amount of friends I have and even then we only chat on Facebook and hardly ever face to face.
    That is what I miss is face to face talk. Just because I'm in a wheelchair it doesn't mean I can't have fun.
    My hubby gave up work to be my carer and all I see now is my kids aged 14 and 25 and my hubby oh and my lovely doctor. 
    So yes I feel totally excluded and it's not a nice experience. 
  • DeefunkedDeefunked Member Posts: 1 Listener

    I have often felt excluded, especially by the NHS.  I have fibromyalgia and ME which forces me to use a wheelchair and scooter.  I also have severe Post Traumatic Stress Disorder.  I went from being an active police officer to being a shadow of my former self.  Although my friends are brilliant, there are so many hurdles we have to face.  Trying to get treatment for my PTSD is impossible - in fact, a lot of doctors don't even know what it is!  I keep being told to take anti depressants, and I keep telling them I don't need them, as I'm not depressed! The mental health services in this country are appalling!  Physically, I am told that there is no more they can do for me regarding my Fibro/ME, and I have to put up with the pain.  When I am out on my scooter, every journey is met with being unable to pass vehicles parked on the pavement, and lack of dropped kerbs.  I can't tell you how many times I've had to turn around, find a dropped kerb, and travel on the road.  Terrifying!

  • mamajayne69mamajayne69 Member Posts: 7 Listener
    Deefunked i totaly know how you feel as ive been told the same by the nhs that there is nothing more they can do for me. 
  • CousinJustineCousinJustine Posts: 9 Member
    I find that I am excluded from customer service by businesses. If I tell the business that I have a mental health condition, and need something from them, it is like the mark of Cain. They treat me like dirt, and I receive a sub-standard service. 
  • UniqueearthlingUniqueearthling Member Posts: 5 Listener
    I moved to a new area 8 years ago, i was alone and thought as i had always made friends before it would be easy, but i was wrong, if i do see someone its for as short a time as possible as they have other interesting things to do, and i do not have interesting things i am able to do, the walking club is out as much as i would love to go. i have no family here and i find fatigue causes difficulties, i can plan but then have to renege on it as i feel unwell. i find people are not interested in my lack of abilities as they need someone who is able to be more get up and go. People say go to the club across the road,but it is exercise and bingo, and as i am a reader, and a counselor, who has an intellect, i would find it difficult to enjoy talking about my grandkids as i have not seen them for 6 years as they live far away. I miss them and my family and no there is no answer or i would have thought of it. i find the TV, my garden and flower arranging is interesting,but i used to make jewellery until i got tremors, and flung more around the floor, then my hoover complained..I have difficulty walking so now have a power chair and find i get more respect than when i had a scooter, and used to have awful abuse with a scooter. as they are very visible and not able to get on trains with them or on buses. so considered a lowlife who is not disabled, as the world and his wife have one and it is associated with mobility benefits. The psychology of judgement is the governments way of making people feel less than, it is so wrong. A neighbour of mine would meet with her friend to a betting shop not sure what they are called, to play slots..so 3 scooters were outside, and they were caught by the government spies, they said if she had money to gamble with she could afford to be without benefits. They don't realize most of us are unable to find things we are able to do sitting down. Sorry such a long post.. in short most people need to find equals, who enjoy the same things to do. But fatigue and pain stops that happening. I feel trapped and sometimes lonely for a good friend.
  • Piglets12Piglets12 Member Posts: 17 Connected
    I no it's hard and understand your pain. We both want to do things and it's hard. People benifits and all whatever we want to do like me and church it's so hard to even get noticed. It needs a change in atitude and awareness
  • selkieselkie Member Posts: 9 Listener
    Yes me too and i have also noticed the negative change in attitude since 2010, much more negative attitudes to us. Lots more comments "I saw you stand up, so you dont really need a wheelchair" and "Stephen Hawking worked so why cant you " etc etc ad nauseum. Then there was the chap who knocked me with his car because i was walking too slowly out of the disabled parking bay
  • CbearCbear Member Posts: 14 Connected
    Reasonably new to using a wheelchair and can walk a short distance on crutches. One evening we were due to go out to our local pub for a family meal. The pub does have wheelchair access but it's a struggle in the restaurant. In my own head I was deciding if to go in my wheelchair and be comfortable or struggle on crutches. I had made my decision that I wanted to be comfortable and I was going in my wheelchair, then my father rung up and told me I shouldn't make a fuss and to leave that thing (my wheelchair) at home!
    100% felt excluded!! 
    My husband and I laugh about it now but at the time it really knocked my confidence. I don't really think my dad had thought about his comment. My wheelchair is now nicknamed "The Thing". 
  • urulokiuruloki Member Posts: 12 Listener
    I woke up earlier than usual today, I knew last I was going to have a bad day today, it was very difficult getting into bed, it's a sign that getting out will be harder. 
    It took me two hours to loosen my joints enough to get out of bed and another hour to get showered and dressed for going to see the nurse to have the dressing on my right leg changed, it smells infected. 
    It's raining heavily outside so I wear my water resistant coat. (Stupidly I don't have water proofs yet) 
    Anyway I go to the doctors and get my dressing changed, it's not infected and I get blinged up with a sliver embedded dressing and head to shops. 
    I am heading home and my joints are getting very stiff it's painfully slow progress when I see three cars heading my way all three drive straight through the big puddle on the roadside and I am soaked to the bone a fourth car speeds up and changes direction towards the puddle, I can't get out of the way and get covered again, a man on the other side of the road finds this very funny, to be honest I felt like crying, I carried on and made my way up rocky balboa hill (it's a third of a mile and a 20 degree slope) I don't celebrate reaching the top and make it home, I am filthy, my dressing has pretty much fallen off and I have to strip off my chair to dry after taking a shower in it to clean me and the chair. I am exhausted mentally and physically and wondering about our society......
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    That's disgusting. I'm wanting to go and slash some tires (joking). Grrrrr!
    I am a fibro warrior !💜♏️
  • cmcicmci Member Posts: 36 Connected
    A absolutely disgusting!  Hope you keep warm and feel warm and safe now you're home. 
  • ShonShon Member Posts: 20 Courageous
     I am excluded from loads of things. Like going out for a friends birthday yesterday. Or parties and the likes of. Upsets me but i gotta put up with it. 
  • alibongo51alibongo51 Member Posts: 17 Listener
    yes,i feel excluded.ive become more hard of hearing which seems to get even worse after constant operations.i seem to have isolated myself too, as get so upset when people get annoyed or "rollseyes" when i cant hear them.i dont get any invites anymore and no visitors either.one friend even messaged me and said we,l be text buddies till i get my hearing back! sooo just me and my furbaby.love him more than humans i think 
  • selkieselkie Member Posts: 9 Listener
    Yes, i agree with you about our furbabies. Its hurtful when people expect you to get better when you would love to but just cant.
  • alibongo51alibongo51 Member Posts: 17 Listener
    hi selkie,it is hun.i doubt very much my hearing will ever come back so il either have to teach myself not to get upset,or find more understanding friends lol..bit hard though when stuck indoors all time with other ailments.
  • selkieselkie Member Posts: 9 Listener
    Hi ali,  i know exactly what you mean, but i am sorry we are both stuck in the same boat. I found wearing a lanyard with a laminated card both of which i bought from the hearing web site tucked under my jumper and jacket ready to whip out as necessary helps me a lot, saves lengthy explanations and seems to help people understand. Please dont get isolated,  its so very hard i know, but its even harder to restart mixing again in my experience. I find my hearing aids a relief now - i can turn them off in very noisy surroundings and back on when i need to listen. The little card asks people to to look at me when they are speaking so that i can lip read. Where would we be without our furbabies, bless their furry paws. Such lovely company and always happy for a cuddle. Xx

  • urulokiuruloki Member Posts: 12 Listener
    So sorry to see how badly you have both been treated, you deserve better. Don't let the ignorance grind you down. 
  • alibongo51alibongo51 Member Posts: 17 Listener
    good morning.hi uriloki,thank you.i try my hardest.hope your ok :)   ...hi selkie,so true,hes such a lifesaver,helped me get out of the flat after id had a stroke.can manage little walks with him😍...i cant have hearing aid as i have ongoing infections in both ears.im always getting them cleaned at hospital(supposed to be every 4 weeks)but that never happens 😒plus bad tinnitus in both ears at same too! anyway i wont waffle on.take care both n hope you have good day :)
  • selkieselkie Member Posts: 9 Listener
    Hi ali and uruloki,  thank u from me too for your wise words. Ali i really do feel for you,  its hard enough living with health conditions without suffering exclusion on top. If i were you i would wear the heaing lanyard anyway, even if it just has the advice card attached to it.
    Just a thought, we three (at least) are not excluded anymore - we have each other and we have scope. Xx
  • alibongo51alibongo51 Member Posts: 17 Listener
    we do,its nice to know people are there for each other.ill look into it,thanks hun.😘
  • selkieselkie Member Posts: 9 Listener
    My pleasure and its lovely to 'meet' you both. I'm sending big, gentle hugs. Xx
  • alibongo51alibongo51 Member Posts: 17 Listener
    likewise hugs back n a big lick from furbaby😊take care xx
  • selkieselkie Member Posts: 9 Listener
    Thank you, you too. 😚 xx
  • Nidge99Nidge99 Member Posts: 3 Listener
    Yes my daughter has a hidden disabilities and learning disability she has often wanted to improve herself her when asking about college courses has been turned down has her grades are to low when doing the excess tests required it's so frustrating for her as she considers herself able not disable 
  • LettybabeLettybabe Member Posts: 4 Listener
    I think most people have hit the nail on the head of the question should be when haven't you felt excluded. Personally I have always felt excluded because people don't understand me, I have many medical conditions these being ADHD, APD, Narcolepsy, fibromyalgia, hypersensitivity, anxiety, depression, PTSD and dissasociative disorder. People have never understood me anyway because I have a unique way of thinking... I can't feel emotions without a logical reason to do so. But more recently I have felt let down by the NHS as have many others on this thread. At the start of this year I started actively trying to kill myself and was under the support of the crisis team for about a week because apparently I having a family member living close to me means they don't need to help. After getting through that but still actively self harming when things get too much I self referred to the mental health team. I had an assessment 2 months later and they had to transfer me to the community mental health team so that they can assess me too and refer me to a psychotherapist for EMDR however they called me recently to say the wait list is over a year long and in the meantime all they will do is have someone call me every few months to make sure I haven't killed myself. I can't be the only person that thinks that this system is broken and people like myself that suffer from severe PTSD find ourselves waiting years just to have an assessment interview. For me personally I find that when my PTSD acts up I have to lie in my bathtub (while its empty) fully clothed crying and trying my hardest not to injure myself. It's so severe that I sleep with a knife now so I feel safe and most of the time I have to sleep with all of the lights and the TV on otherwise I freak out. If anyone knows of any charities that could assist with getting me EMDR therapy sooner to combat my PTSD I would really appreciate the help 🙂
  • urulokiuruloki Member Posts: 12 Listener
    Is your ptsd from serving in the forces? If so contact saafa they can help with almost anything. 
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Hi @Lettybabe
    I am so sorry to hear that you are dealing with so much and I can understand how frustrated you must feel right now, mental health services seem to be under so much strain and many members have talked about how long the waiting lists are to access any support.

    MIND say: 

    The British Association for Counselling and Psychotherapy (BACP) website has an extensive A–Z of therapeutic approaches. This list covers many types of therapy by name, and explains the different beliefs and approaches behind each one.

    Unfortunately it's very common to have to spend time on a waiting list before getting therapy through the NHS. While you're on a waiting list it might help to:
    • Ask your doctor to give you a contact number to ring to check how long you have to wait.
    Our page on facing and overcoming barriers to seeking help gives more suggestions.
    Some community and charity sector organisations may offer free or low-cost talking therapies. For example:
    • Anxiety UK offers talking therapies for anxiety. There is a fee but they do offer reduced costs for people on a low income.
    See our page on seeking help through the third sector for more information. Some charities also provide telephone listening and emotional support services. These are not counselling or therapy, but can be helpful if you need to talk to someone in between sessions.

    You can also contact @Samaritans who offer emotional support. They can listen to you and help you talk through your concerns worries and troubles. You can also call Samaritans at any time, for free on 116 123. If you don’t feel like talking you can also email them [email protected]

    If you feel you are at immediate risk of harming yourself you can call 999 or go to your local Accident and emergency department for treatment.

    Please take care, and I hope you get the help you need. 
    Senior online community officer
  • Danny1980Danny1980 Member Posts: 3 Listener
    I have a condition called AOS Adam & Oliver Syndrome which affects limb growth. I have one leg and a few missing fingers on each hand. I didn't receive any help until I was 21 (now 39). My parents arranged for a specialist doctor to come to their house where I was living at the time for him to asses my disability. Shortly after his visit I received DLA. There was no back payment from birth just a back payment from when it was applied from. My parents over the years kept applying and got refused any help over and over again. 

    I have all my life felt like I was a 2nd class citizen. I have been ignored, under valued, name called, looked at like I have 3 heads and I have had to really fight to fit in where able bodied people take this for granted. 

    Recently at work I was sat at my desk one morning where I over heard my manager and her team leaders talking about Jeremy Beadle. They were mimicking his hands and laughing about his disability like it was acceptable to do so.
    So after the team meeting I asked my team leader for a private chat. When we sat down to talk she could see I was mortified. I was shaking with anger and sadness, I had tears in my eyes and tried so hard not to break down in front of her. When asked what was wrong I explained what had happened and she kept saying sorry as she knew what had happened was wrong! I explained to her that if they had been talking about people who were gay or black etc that it would not be tolerated so why is it tolerated if you are disabled? She agreed it was wrong!
    After I composed myself I went back to my desk to get on with my work. Shortly after I saw my team leader take the manager and other team leaders into a meeting room to discuss what had happened. When they came out nothing was mentioned. There was no apology and still to this day nothing, which upsets me daily to the point were I want to quit my job.

    The above is just one time I have been unfairly treated, there has been many more in my life. What makes this whole situation ridiculous is that anyone can become disabled at anytime through accidents and illnesses. Everyone's children have a chance of being born disabled and still this madness continues! I have seen massive improvements over my life with racism, women's rights, gay rights, human rights and many more rightly so too but very very little with disability rights! What is going on? Something needs to give.........
  • clarkjohnsonclarkjohnson Member Posts: 210 Pioneering
    Well I've learnt life ain't a bunch of roses that's quite obvious from the accounts I've heard from people on this site in fact it's made me feel a little guilty about myself since my illness I slipped into the me me me syndrome when it should be us us us happy Valentine's Day to you all ❤️
  • urulokiuruloki Member Posts: 12 Listener
    It saddens me to see these posts, I am now volunteering for ex forces charities as a case worker to provide anything to people who served, this includes household accessible aids, furniture and also mental health needs, one thing I am driving forward is a system of social events via membership funding so that people can feel included and give them a sense of hope. 
  • Piglets12Piglets12 Member Posts: 17 Connected
    I am excluded in a lot of things even though i good enough i feel i not because of eclusion in a lot of areas.
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