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Social Anxiety - when your impairments exclude you from meeting people

Alex22Alex22 Posts: 11Member Connected

I am 28 years old and I am a quadriplegic Powerchair user. I suffered a head/spinal injury following a car crash as a child. Now I blog at The Life Quadriplegic about my activities such as travelling abroad, wheelchair access, and other general disability issues.

As a wheelchair user I feel isolated sometimes. I find that there are very few places where I can go to meet new people. Pubs and nightclubs seem to be the best options that I can think of. But the problem is I have a hearing loss, and these places are usually noisy, which makes it’s hard to talk to people.

I like to go clubbing occasionally, and I’ve met lots of nice and interesting people in nightclubs over the years. However, I often can’t understand a word they are saying to me because the music is so loud. They will start saying something to me, but I have no idea what. I just have to nod, smile, and hope they weren’t asking me a question – which surprisingly sometimes actually works!

wheelchair user at a gig

Pubs and restaurants are also problematic. There’s usually a lot of background noise with music playing and lots of people talking. If I go for a meal with a group of friends it’s almost impossible for me to follow the conversations that are going on. I have a hearing aid which helps a little bit, but it also amplifies all the background noise of everyone else in the restaurant. Not just my friends.

So it’s hard for me to socialise as people my age tend to like meeting up in noisy places like pubs, clubs and restaurants – not so much in peaceful libraries. My hearing loss combined with being in a Powerchair makes me feel anxious in social situations. I get nervous every time I find myself around a group of people, especially those I don’t know. I tend to be the quietest person in the group as I don’t know what anyone’s talking about, and I don’t want to make myself look like an idiot by saying something random. So often I don’t say anything at all, unless I’m spoken to.

I have tried to join a chess club and a boardgame club in my local city as these would be ideal quiet places to go to an meet new people. But, as is typical, both of them meet upstairs in old Victorian buildings that are not at all wheelchair accessible. So as a wheelchair user I’m excluded.

On the occasion that I do meet new people, they react to me in different ways. Some people lessen my anxiety, and some increase it.

wheelchair user at a nightclub

I get on best with people who talk to me like a normal person. I like people who are chatty, open-minded, and bubbly, as there are usually few awkward silences. These type of people make me feel more at ease as they don’t seem to notice my wheelchair. I appreciate it when they talk to me the same as anyone else they know.

In contrast, some people seem really nervous about talking to me, and don’t know what to say. Or they talk to me like a child, which is obviously irritating. Sometimes they don’t talk to me at all, and talk to my carer instead. It’s hard to have a proper conversation with these types of people. They make me feel more anxious. Plus, if I can’t hear what they’re saying they assume I’m not capable of talking which is not true.

I wish that everybody was open-minded and spoke to me like a normal person regardless of the fact that I’m in a wheelchair. I wish that social clubs all met in accessible buildings. This would help lessen my social anxiety a lot. However, the fact still remains that many people choose to socialise in places that are too noisy. This makes it difficult if not impossible for people with hearing loss to socialise with friends and meet new people.

Do you have a hearing loss and find it difficult to socialise with friends, or meet new people? Do you have social anxiety as a result of your disability? I would love to hear about your experiences.

Replies

  • Neil2017Neil2017 Posts: 158Member Courageous
    Hi @Alex22

    An interesting blog post. I am a 40 something visually impaired person or registered blind. I would not say I am hearing impaired, more affected by certain noises and/or noise levels due to autism.

     I think your blog post on social anxiety meeting people due to hearing loss or impairment is not just applicable to your disability of hearing loss. A lot of people with sight loss claim to be talked through and talked to a carer rather than the disabled person themselves. Or if they have a guide dog or maybe an assistance dog, the able bodied people tend to talk to the dog rather than the owner.


    I also agree that excluding nightclubs as they are  meant to be noiser venues, a lot of pubs , restaraunts and cafes are noiser than they used to be. Some in contrast do seem to be ok like JD Wetherspoons and some Costa cafes.

    Libraries are often another source of quieter areas or rooms. And usually they are more accessible with lifts unless your local authority has not invested in these facilities. 


    Not it sure what can be done other than to try convince friends to go to a quieter venue sometimes. Or campaign for some pubs , bars and restaraunts to turn the volume down even if it is for one day in a week.
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @alex22 How are you.?  Thank you for writing the blog.  I have had similar experiences.  Being now of an age as I grow older my anxiety is getting worse.  I find that where to go to meet people is here I am afraid at the present.  I know it is difficult for yourself as you have stated.  Unfortunately this is what is happening and causing the loneliness epidemic in our country.  I have had hearing loss plus my disability since birth.  I find to hard to get to and go to places.  Everything revolves around the pub.  For a alcoholic I do want to go to a pub.  Music in all places just recent visits to cafes like in supermarkets.  I can not understand the rules and regulations regarding clubs and associations making it all inaccessible for all disabled.  Last social event too far away I even so I have a car other side of town good hour.  Not good parking not good accessibility just gave up.  Not good I get nervous in front of people.  It is the questions we all get asked that get to me.  Why are you like that?  Does it hurt?  At the very least on here I can talk freely with out any problem and can meet people like yourself.  I enjoyed what you wrote and I hope to speak to you soon Take care and thank you.
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  • TopkittenTopkitten Posts: 1,003Member Pioneering
    @Alex22 you may find this a rather strange post.

    On the face of it I am luckier than you. I still control all my limbs. I have no visual or aural impairments except Tinnitus (which only makes it difficult to hear some voice pitches). I look normal and healthy as my problems are invisible. I can drive. I can choose whether to walk, use a wheelchair or a scooter. I don't need a carer with me when I go out. I have almost 50 years of normal healthy life and family, with the ex-wives and children to prove it. Yet I envy you.

    Why is complicated but I will try to explain....

    I cannot use my body without, at every moment, thinking will this hurt or cause problems. Will I suffer later or tomorrow or the following day? I am frightened of turning or twisting so that many sports that I used to do or could try are beyond my even attempting. Unlike you I know what I could be capable of. Not just in theory but in fact. I am also on a fast downward spiral which you may also be but, because you don't mention it, I assume it isn't something you think about much.  To me it is in the forefront of my mind always

    It hurts me mentally that I have become so useless, so much less than I was and, if I had the choice, I would gladly give up the use of my legs if only the pain would stop. Then maybe I could be more of what a disabled person is considered to be in the minds of those that make decisions about my life and maybe would be able to get the help I need but constantly get refused.

    Life is tough for all of us. We all, most likely, think that person A or B is better off when they think no such thing. Our 'pain' is that we are restricted or ignored or looked down on and it is difficult to overcome. Most try, at least a little. Some give up trying and just exist. A few look for a way out, mostly in the wrong way.

    I hear from healthy people a lot that they consider the disabled well looked after and simply become disbelieving if I dispute it. I am then seen as ungrateful or awkward or nasty and then become overlooked and ignored for not understanding what they believe to be the truth.

    A lack of understanding is the biggest barrier to us having some normality in life. Unfortunately I don't see there being a possibility of change in that sad fact.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Alex22Alex22 Posts: 11Member Connected
    edited December 2017
    Hi @Neil2017
    I can imagine It must be difficult socialising for visually impaired people like yourself. I think people make too many assumptions when interacting with people with disabilities. Or maybe they are not sure what to say or do, and think it's a safer option to talk to the dog or the carer instead of yourself. More disability awareness is needed I think. There is a campaign by action on hearing loss which tries to make restaurants and pubs quieter, so hopefully that will help. 

    I would recommend joining the outsiders club, which is a group for disabled people who find it difficult to socialise. They meet up for lunch is every month in given areas around the country. It's a good way to meet people in a similar situation to yourself. Here is their website if you are interested in having a look: http://www.outsiders.org.uk/outsidersclub/


  • Alex22Alex22 Posts: 11Member Connected
    Hi @thespiceman
    Thanks for your comment. I feel your pain regarding getting nervous meeting people and places not being accessible. I always feel nervous meeting new people myself. Especially when it's a group of people. If it was just one person and I was talking to them one-on-one it wouldn't be so bad, because then I can focus all my energy on just that one person. But groups of people I find very difficult to communicate with. Have you ever come across the Outsiders club? They are a group of disabled people who find it difficult to socialise for whatever reason. They meet for lunch is every month in various places around the country. I recommend joining Outsiders as it's a good way to meet other people in a similar situation to yourself. Here is their website: http://www.outsiders.org.uk/outsidersclub/
  • Alex22Alex22 Posts: 11Member Connected
    edited December 2017
    Hi @DannyMoore
    I don't like small talk either. I find it awkward and I'm not very good at it. I agree that there are much more interesting things to talk about than the weather. Like favourite movies or hobbies for example. I know what you mean about young people swearing and drinking a lot nowadays. It's somehow "cool" to get drunk, take drugs, or swear all the time. But I'm sure that there are some groups of people that don't do these things, you just need to find them. For example, I would recommend joining the Outsiders club, which is a group for disabled people who find it difficult to socialise. They meet up for lunches every month in various places around the country. Here is their website if you're Interested: http://www.outsiders.org.uk/outsidersclub/
  • Alex22Alex22 Posts: 11Member Connected
    Hi @Topkitten

    Thanks for your comment. I know that everyone has their own cross to bear, and there is always someone worse off than myself. I'm sorry to hear that you are not able to be as active as you used to be. Do you mind me asking what disability you have? I agree with you that there is a lack of understanding regarding the needs of disabled people. There needs to be much more disability awareness in my opinion. Like you say, many people are unaware of the problems facing disabled people in society. 
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    @Alex22 The disks in my spine are collapsing causing Chronic Pain and, due to occurring for a decade or more, now neural pain from permanently damaged nerves. The condition is progressive. 2 disks detected in 2006 and 8 this year. In addition I have a ruptured cervical disk, my second. Blood circulation issues. Blood pressure issues though fortunately they have been under control since I came out of a coma last year. MH issues of severe depression, anxiety, panic attacks, agoraphobia & paranoia.

    I cannot recommend Outsiders since I had issues there. I and another lady were attacked simply for having an opinion and now a lady from there has messed me about for nothing other than her own selfish reasons.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Apologies, meant to include this as well.

    Having had no help I decided to tackle my agoraphobia head on and have had some success in helping myself. Not a route I can recommend to everyone but did help me to the point that I can now walk into a pub alone only feeling moderately concerned so long as I know or expect someone I do know to be there. I can also attend most of the sessions arranged my Meetup groups even if I join a new group. By concentrating on just one the other MH issues tend to be a little worse but I will try to get around to them once I know I can stabilise the one I chose to work on.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @Alex22 Thank you for replying.  Thank you for being supportive and understanding.  I will have a look at the outsiders website.  My concern if they meet in a pub.  Just do not want to go to pubs.  Due to my addiction history.  Thank you.  I hope you are OK and I hope you take care.  I did enjoy what you wrote.  Look forward to more contributions.  I hope to speak to you soon.
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Outsiders do tend to meet in pubs @thespiceman . They are also few in number and tend to be in major centres like London. From my point of view there were few people in the East of England and the only meetings I could have attended were in London which is very difficult for me to get to. After the problems I had I removed my profile and left the secret FB page. It appears, from what I was told, I am still in Outsiders but there is no way for me to have any idea what is going on. Whilst good in theory this sort of thing is down to it being run by people who haven't really thought it through and do not really manage it properly. It can, however, be a good place to make friends online but it does rely on you giving them access to your FB page. Depending on how that is set up it can give away a lot of information about yourself that maybe you wouldn't want to.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @Topkitten Thank you for reply.  Hope you OK.  Thank for letting me know.  I did access the webpage yesterday.  To be honest could not find what I was looking for.  It seems good on the surface but as I am lacking in confidence and anxious about anything like this.  I went through what they had to offer.  Problem had rerun of in my mind what is going to happen last time.  I live in the North East of England and lived at one time in a mining area.  Similar group set up by a lady put usual ad in paper.  Went along only been in place for five minutes and felt immediately uncomfortable.  I am one of these people do not mind talking to me, but in my face.  Felt had to give my lifestory.  They were in control the ladies in the place.  I not mind competing is that the right word I do not know but ended up literally saying do you want me fill out an application form.  I can do a slide show on my life.  I am not a rude straight talking but you felt you were at any minute one of the ladies present going to ask for a proposal of marriage.  I know it sounds silly but I had to stop this and said to the lady running the event.  This is a cattle market.  Really if every body calmed down but us gents were outnumbered by three to one.  Funny thing I had at one time thought I will meet some one.  Set up this Facebook page.  Hated it.  Very intrusive.  Got messages and content from people who I did not know.  Thought are they telling truth.  Been lied constantly.  Then had panics got messages from people who did know me.  This set me off because I not really what to meet people from my past.  Then a lot of worry might know family.  Family do not know where I am.  I do not want them back in my life.  Have all my web chat explains everything.  Please can I thank you for being informative.  I know I have been rattling along about this on the forums.  Difficult it is getting harder to meet any one.  Do not know what to do sometimes.  Only connections I feel with people like yourself and others on this forum.  Thank you and take care
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    @thespiceman I wasn't trying to put you off. In theory it could work very well but needs to be managed better. There is none of the pressure you mention and, in this case, the men outnumber the woman. If anything it is the men showing desperation by arriving and immediately wanting to go to PM to arrange dates. Most of the women are looking for friendship. At least on the face of it. There are also people on there already in relationships just looking for people to talk to online. I just thought it best to mention that it requires a FB page and if you start making friends they will see what is on there. Obviously you cannot control what they tell others but I didn't find it a place with back-biting gossip going on.

    It seemed a friendly place but the management needs improving to keep out those for which it really isn't suitable and to react when those people start attacking others.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @Topkitten Thank you for reply.  No you were not putting me off.  It is me I am too aware of my painful history with relationships.  The fear of being used and abused.  I was just trying to put myself across and explain things.  I am always grateful for wise words and knowledge plus support.  I have a mental block and am frightened sorry not easy to say but scared of going forward.  It is not easy.  I had relationships with ladies who seem to want to get what they want out of me.  This includes usual things money, house, car.  Had one lady being frank here said to me if we have a relationship you will do for now.  I just sat back as the lady started on the ideal shopping list of the perfect man.  Set me back about a month or so then.  I decided what is the point.  The other issue is that being in my early fifties most ladies I meet or have met have a long baggage history.  Which they keep bringing up and comparing the past to now.  This is hard to explain but I seem to meet ladies who have similar history to mine but instead of being understanding.  I get the brush off when they want to know more.  I mean I do not go in to dates meet at a café or similar then the why not a pub then I say I do not like pubs.  Questions and more questions.  Too probing.  Look what happened to a lad I knew met some one he had an addiction history did not tell her.  Kept it quiet and then she met him in a pub and he had a soft drink.  Unfortunately he started again drinking because she ended up getting at him.  Why do not you drink?  Even asked me this women and I said I am not discussing his private matters.  When she found out he relapsed been clean for five years.  All I know he on the booze and she has gone.  So what I can do?
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Dealing with women like that @thespiceman is fairly straight forward. You simply counter with "So long as you go the sex will do for now, while you make up your mind". Always keep them off balance and you will control your own life. Whenever you feel put down it's a matter of striking back with something they find uncomfortable. Sex or at least the mention of it, is usually a good way to do so and for you there is no downside. Either you get the relationship you want or you get laid or maybe both. The most likely thing to happen though is that they will leave you be but you will be remembered as someone not to mess with and the word will spread.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @Topkitten   Thank you for reply.  I am afraid too polite and try at always use humour.  Nice guys come last is the statement ringing in my ears.  There are times I have been shouted at by so called fairweather friends to stand up for myself.  There the ones who come on the phone going on for hours about all failed relationships.  I am also have so much respect for myself and know my limits.  It is becoming  difficult as I get older to be happy and find happiness.  I get annoyed with so called fairweather friends who so much interfere in my life that I stopped answering any calls and texts.  I had the opportunity to go out recently for a meal with a so called fairweather friend who unknown to me had set me up with some lady.  This is what happens.  The lady is in question the mother of the girl he is going out with   I am very polite and keen to listen but she straight off got wrong impression and I was stuck with her.  All night trying to be just much as I can listen.  I never got a word in edge ways.  I could feel myself becoming distant and made some excuse.  Oh I will come back with you barking at me.  I just did not want this.  I am sorry I apologise but I am afraid I just want to be on my own.  Well the language and the attitude I was pleased for myself because she showed her true colours.  What really hurt me was this fairweather friend had told this lady all about me.  A lot of it tosh and not true and it came out there and then what she said.  I am a proud gentleman but the truth is I know one day some one will come along really that is right for me.  I have to feel right first do I not.  I have think and be positive.  A lot of these called fairweather friends have married multiple times and have loads of failed relationships and have loads of children all over the place.  They are still unhappy and feel trapped.    Do I want to be like them?  They only ring when every thing goes belly up and need me to listen and want anything.  I have wiped off all their numbers and details.  Which is good and no one rang me yesterday for favours and the like.  Yes I am still lonely but who needs people like that.  I have one true friend up the road who cares and supports me which is great.  I do the same for him.  Thank for wise words as always pleasure to talk to you and thank you for being understanding
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    It's funny really. Ladies always refer to me as a nice guy or as a gentleman and I have a definite and very fixed idea of honour that I stick to. One thing I do not put up with though is fools. Everyone has a wicked and dark side and that comes out when I run into the multitude of fools I see every day. They do not deserve to be treated well and so I don't treat them that way, no matter how much they feel they deserve it. Ofc I never tell them how I see them because that would be rude but I can and do rise to the occasion in the way I treat them. @thespiceman this is something you need to learn and understand. There is always a way of dealing with such people without appearing rude but still making it absolutely clear that you will not tolerate them. I find humour to be the best way as it also leaves them with nothing to be nasty with as they never know whether you mean it or are joking. It dissolves any rising anger at you and yet still allows you to withdraw without any loss of self worth or anger. Given time to think about it they will usually assume you were rude but by that time you are away and gone and all will be forgotten should you ever bump into them again.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @Topkitten How are you?  Thank you for reply.  Thank you for sound advice.  I was reading what you have said.  There is a film produced in the fifties called School for Scoundrels with Ian Carmichael and Terry Thomas.  It is all about how a gentleman should behave and present himself to the ladies and the pitfalls.  Maybe you should set one up.  I have so much to learn.  I do use a lot of humour dry wit and use lot of one liners thank you Ken great you got knighted at last and Tommy always in my thoughts.  I try doing a lot of their stuff daft I know but when you meet some one like I mentioned.  I could not help it.  I found her totally unresponsive to anything I tried to say.  All I really wanted to do was to disappear in a cloud of smoke.  My anxiety started and when someone like that lady starts on you I had to say some one liners to cope.  I have now put it in the back of my mind.  Down to experience shall we say.  I am always grateful and I hope you are coping with things.  Best wishes and great to talk to you.  Take care speak to you soon.
  • ChaoskayChaoskay Posts: 74Member Courageous
    Hiya, Although I'm considered to have normal hearing abilities, I've always struggled to hear people in pubs and clubs too.  It was always difficult in my younger years when it was expected that people would meet partners in these places.  I couldn't even hold a conversation with them. Let alone know if I liked them or not.  
    I found out years later in a hearing test for a telephone job, that there's a tone I can't hear at all, which may be why I couldn't hear a word whilst my friends chatted easily with others in these environments.  It's horrid to feel excluded from everyone else's conversations.  
    Now I avoid pubs and clubs and socialise at clubs and at people's houses, and just with people passing on the street. I love dogs and walk everywhere so I have the opportunity to harass every dog walker I pass.  People love to chat about their pets and it's led to some friendships.    it's all about finding a comfortable way into a conversation isn't it.  
    I really feel for you when it comes to access difficulties.  In this day and age you'd think more buildings would make more allowances for disabled people.  I suppose we can only fight for the government to make access mandatory so as not to exclude people with disabilities.  
    In the meantime, I wish you all the best. Thank you for sharing your experiences with us.  :)
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Access is an often aired issue. There are always difficulties though. I live in a basically very old town and, whilst a lot of new buildings have been put up, a lot of the buildings themselves were built before wheelchair or disability access was even thought of. Also many buildings have restrictions on changes so they cannot be made better. Still, though some efforts on the pavements have been made the standard of thoughtfulness is lacking and the maintenance is dreadful. On one street the pavement is so difficult to navigate that it is better and safer to use the road. Fortunately this is just an access road so little if any traffic uses it daytimes.

    One thought does come to mind though. Considering that the disabled are a minority why is it that we feel it necessary to demand special treatment? Also why should more laws be made to further the interests of a minority? Raises an interesting point if every minority started demanding the same special treatment.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • SocialanxietySocialanxiety Posts: 6Member Listener
    edited January 2018
    I feel terrible for this man. People who have disabilities of any kind are treated badly by society, and this can worsen our social anxiety massively. We need compassion, kindness and practical help.
    John, www.ibeatmysocialanxiety.com
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @Socialanxiety Welcome to the forum.  How are you?  Please can I say the big problem is them out there the public.  Is it not?  If you read my stories on this forum daily encounters with people who have no idea about me how I am what I am.  I am a polite old fashioned gentleman but the social problems of the disabled are becoming more and more evident.  I have anxiety plus depression plus a physical disability.  Problem is I have a label stuck on my head saying this.  I am judged on appearance.  Simple things and tasks are turned into a sweaty nightmare for people who are not tolerant, not patient.  Simple visit to Post Office to get stamps yesterday into a sweaty nightmare and horror.  Every day going out is one.  Have fingers missing use money bags for change and a wallet for money.  Not easy to get change out and money not easy these new notes.  Change on floor, busy queues, etc.  Then there is the as we have said the accessibility of places.  Nothing is going to change is it.  We need compassion, kindness and practical help great yes we do.  Unless the whole country has a disability and is like our community nothing is going to change is it.  Nice to talk to you hope to speak to you soon
  • SocialanxietySocialanxiety Posts: 6Member Listener
    Hello. Nice to meet you. Yes, I can relate very well your sweaty nightmare comment. That's how going out and into shops etc always was for me. Daily meditation and focusing only on I'm doing at that precise moment helped to change me (mindfulness). People have difficulty relating to problems that they've never experienced. Still, I think we should still try to put ourselves in the place of others, and imagine how they are feeling. Empathy and consideration. Nice chatting to you as well, and I wish you all the best. John
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @Socialanxiety Thank you for reply.  I am on meds for anxiety and also for depression.  I have tried this mindfulness courses before.  Nothing seems to go in and I had problems being able to understand it.  Please can I also say I try to think of others who are not like me or part of our community  I am a Christian and have moral values.  I feel am kind and considerate.  The issue here is the way I am treated by others who are not like me.  People do have difficulty relating to problems they have never experienced.  Not only do they not understand myself but want to dominate and control.  Many wont even talk or even worse talk down to you.  Till you have had that. Remember before you speak people are making their own mind up.  The way to treat you.  Till I get the respect and as you call empathy from others who are not like me or in our community.  I always be on edge and have to be on guard.  If you wished to look at my pieces or blogs or threads plus others you will see the problems that are really happening in this so called equal society.  I hope you do.  Nice to chat and I hope to speak to you soon.  
  • Alex22Alex22 Posts: 11Member Connected
    "One thought does come to mind though. Considering that the disabled are a minority why is it that we feel it necessary to demand special treatment? Also why should more laws be made to further the interests of a minority? Raises an interesting point if every minority started demanding the same special treatment." 

    That's an interesting point you make @Topkitten

    In my view the disabled are not asking for special treatment. We want to have the same rights and opportunities as everybody else in society. For us to be on equal terms with everybody else we need adjustments to be made, either physically to buildings or to people's attitudes. We don't want to be treated more favourably than everybody else. 

    In fact it is in EVERYBODY'S interest to create equality for the disabled because anybody can easily become disabled at any time. If not through disease or illness or accidents, it would be through old age. Society is getting older and people are living longer than ever before, so therefore there are more disabled people than ever before. So it makes sense to eradicate as many barriers to equality for the disabled as possible.

    That is my view anyway.


  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    edited February 2018
    Hello @Alex22 Thank you for the points raised.  That is the big question is it not.  The general public do not recognise our community.  We are a minority.  I used to say before you decide to be critical accuse and abuse walk a mile in my shoes.  This I would say to non disabled people who would treat me badly.  I have said two things can not stop old age and with it the possibility of being disabled through old age.  Get shot down by people who I would say it to.  Until we get treated the same the barriers will still be there.  We can go over them if we as a community make a voice.  Have a shout.  You have the power so does this community.  Change can only come by supporting each other in an equal fairer society.  Looking towards the injustices and discrimination we all suffer.  We as community as you have said struggle to get access to events or have a social life.  When and how that will be who knows.  All I know the situation has to change.  The work and struggle and to strive has been going on too long.  I do agree with your views and opinions.  Thank you hope to talk you soon.
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    edited January 2018
    Thank you @Alex22 for making that clear. I do play devil's advocate at times. Whilst I agree, I have found that when I am amongst or talking to healthy people (even older ones), the idea of mixing with the disabled is the furthest thing from their minds. At a cost to myself I can appear to be almost healthy and do so often when I am out with the MEETUP people and they are all mostly healthy or have early stage or trivial restrictions. Interestingly I haven't really come across any group aimed at the disabled specifically and only one other person is severely disabled and trying to fit in. I do find though that there are definitely some that will talk to me when I take the initiative but will usually stay a fair distance from me and not make an effort to include me. It is difficult to be certain though as, especially at the moment, I am not in the best frame of mind to fit in and be completely accepted.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • DominiqueDominique Posts: 16Member Connected
    Hi Alex, I have moderate athetoid ataxic cerebral palsy and requested from my social worker an interpretation facility from my carers before I started Uni way back in 1990 because I have a speech problem. She refused me this if my carers could not also then become friends with those students who would've become my friends, through my carer/interpreter, and wanted my Uni friends to also have been my carers friends, as well as my carers, who lived in my Hall of Residence with me, having their own friends from the student body. So all my student friends would've been shared with my carers. As an atheist who'd been brought up in controlling religion, didn't want this. 

    So at Uni my carers wouldn't interpret my speech for me - even though this was only needed until the students got used to it - and therefore I didn't make as many friends at Uni the first time as I could've, which sickened me because I felt very isolated as a disabled person throughout my whole university degree, perhaps apart from in lectures. Broken bones hurt, but loneliness hurts in a similar way. I know that today social workers can't do this to disabled people, that they can't refuse us interpreters, certainly in Scotland where we still have the Independent Living Fund. We are people the same as anyone else having friendship ambitions and socialisation techniques, and I am rudely aware today that you specify a carer's job on your job description or support plan. According to the ILF, if you say you want your carer to interpret your speech with the intention of making friends, then they must.

    Although I had some friends at lectures where I was determined to succeed meant that I answered questions when I knew I was right, believing that my lecturer could work out what I was saying, I still had few friends in my Hall of Residence because my social worker said my carers were not there to help me make friends but were only there to dress me and provide me with personal care. This experience has affected the rest of my life which hasn't gone the way I had planned, again because my next social worker didn't see my point of view of my context. 

    We need to make sure through carer codes of practice that our own contextualisation of our world is understood by our social workers and carers and that our point of view of our rights is respected such that our future is made by us and not by our social workers. 

    I'm now studying again, because I really enjoy the work, but this time online, which is a much better experience! 
    Dominique

  • TopkittenTopkitten Posts: 1,003Member Pioneering
    I have a very low opinion of Social Care as a whole. Despite being assessed as needing help to go to GP and Dentist appointments I was never allowed it initially. This led to me not having a GP at all for 3 months because I was de-registered and could not go to any surgery to register. My complaint to mu MP was simply passed onto Social Care's internal complaints department who, instead of upholding mu complaint, gave my Social Worker a glowing report.

    At a later time I was given a new Social Worker, an inept trainee. This one messed up so badly that in order to save her job I was reassessed as no longer needing help at all, despite being in worse health than before. Their report also castigated me for being abusive, sexually harassing carers and completely impossible to deal with. So now I am blacklisted from having carer support. Ofc the inept trainee kept her job as a result.

    I don't know if they are such lying scheming bitches everywhere round the country or whether it is just a local problem. I do know that they cannot be trusted under any circumstances. I have been contacted by 3 other departments all of whom claimed that they could not do this to me and would sort it out and each got back to me eventually stating that there was nothing they could do. The people in charge seem to be middle aged women who are quite prepared to do and say anything so that they can provide decent support for other women. It's absolutely disgusting.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Alex22Alex22 Posts: 11Member Connected
    Hi @Dominique
    Your experience sounds familiar to mine when I was at University. My hearing loss made it difficult for me to talk to other students and make friends. But my carers seemed to get on better with the other students than I did because they had no such communication problems. And I think the students preferred to talk to my carers then to me anyway. It's really common that able-bodied people talk to the carers of disabled people rather than the disabled person themselves. The carers that I have at the moment do try to say to people that they should talk to me rather than them. But because of my hearing loss I will have difficulties talking to them anyway if it's a noisy environment.

    Some carers are better than others, and unfortunately there are a lot of bad ones out there. At University I had about 15 different carers in three years. Of which only about 5 were really good. I think the best carers should help you with whatever you need regardless of what the social worker says. Interacting with other people especially a university is very important. The social aspect is almost as important as the academic aspect my opinion. It's all part of the University experience. If carers are not willing to help you get the full experience then something needs to change. And you are quite right that The codes of practice should be dictated by the service users themselves not social workers who have never actually needed carers.
  • DominiqueDominique Posts: 16Member Connected
    Alex - it's great to hear someone else has had the same experience as me! Although I am dismayed that my problem with loose and laughing carers is widespread. I hated other students, especially members of the Christian Union, supposedly supporting my carers to interact with me, by talking to them and not me, when it was me who needed support to interact with my lazy and egocentric carers. I did find support from the Hall wardens who were often outstanding at saving me from indignity and incontinence (my carers wouldn't be in their rooms when I needed them) by physically assisting me themselves or by sidelining another student nearby the toilet to assist me, but unfortunately they did not manage to save me from my future carers who were from yeatanother social worker.  


    Fortunately for me the head warden of my Halls used to be the doctor at my special school's, so he believed everything I said about my carers when normally you wouldn't. He made a very successful intervention about five weeks into my degree which sobered my carers up - literally as well. However, this only saved me from insanity and basic disrespect and did not elevate me to having the full social experience of university which I could've had if my carers hadn't mattered to other people so much. After the first few lectures in every year, my lecturers didn't give a toss about my carers because of how I answered the questions, and since it was always the students who cared for me in lectures and in the lab, they couldn't care less about my carers either and gave them dirty looks etc when my carers sometimes assisted me to take my jacket off before lectures, if they spoke to me unkindly or nastily. So I felt very much loved in lectures but not really in the Halls. 

    I think something needs to change about the disabled students' experience of university social life because my experience was nauseating. We need a marketing campaign perhaps with a TV advert saying "Don't talk to my carer, talk to me please. Your exchanges with my carers may hurt." 

  • SocialanxietySocialanxiety Posts: 6Member Listener
    It's difficult to put myself in your shoes @alex22 and @thespiceman, but I empathize with both your plights. I also have disabilities, albeit non visible ones. I've been made fun of and judged in many derogatory ways for decades, so I can relate, although my problems are different to yours. We all want to be respected and treated kindly. Really shouldn't be too much to ask for. I hope things get better for you both.  I treat people's social anxiety problems through my website: www.ibeatmysocialanxiety.com. I've also written several articles about social anxiety that might help you. Stay strong friends, John

  • TopkittenTopkitten Posts: 1,003Member Pioneering
    I don't think this is a carer problem per se, more a society issue. People simply do not think of others. It is all about themselves. Most social network succeed by self aggrandisement and this help people to become more and more self centred. They simply do not see what is going on around them when it relates to others.

    It is a shame that it has affected you in the way it has but, from what I have heard, university if full of people all acting this way.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • SocialanxietySocialanxiety Posts: 6Member Listener
    Hi @thespiceman and @Alex22. I don't know how you feel, but I can empathise. I have been negatively judged and made fun of for decades, as I have disabilities too, albeit invisible ones and I developed social anxiety because of this. We all need respect and kindness. Shouldn't be too difficult for people to be nice to us. I hope things improve for you both. I am Christian too and Buddhist. Both help me a great deal. I help people with social anxiety, through my website http://www.ibeatmysocialanxiety.com/ I've also written several about social anxiety, which may help you. Good luck to both of you. John
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