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Disability and Social Isolation

gervellegervelle Posts: 4Member Connected
edited December 2017 in Guest blogs

Geri acquired a C6 Spinal Cord Injury four years ago as the result of a cycling accident. She runs spinalcordinjury.ie blog as a way of offering advice ranging from practical information, such as personal grooming and mobility, to fashion and travel tips. She has gleaned this information over three and a half years post injury, and now shares it to help others with spinal cord injuries. Today, she talks to us about social gatherings at Christmas time.

Disability comes with its own unique trials, but for me as a very social and outgoing individual, social isolation is one of the hardest challenges to accept. Over the festive season, social gatherings become a buzz word. However, this can be an extremely isolating time for disabled people with many, including myself, unfortunately being excluded.

Due to elevated stress levels associated with outings due to accessibility issues and the resultant mental fatigue I feel, I find it hard to do things at short notice. I therefore choose instead to opt out of social events, thus adding to my isolation further. In my experience of transitioning from an able-bodied world to a world tacked on haphazardly for a person with paralysis, segregation is commonplace and sadly an accepted part in public spaces and beyond. To be included in society is a full-time job in itself, not to mention during a time of intense crowds and thick human traffic flow. More often than not, a lack of accessibility and limited movement of disabled people in public spaces is commonplace and accepted. In my experience, bars, pubs and clubs often contain hostile and hard-to-navigate spaces with disability not being an inclusive part of the design process. Spaces do not flow easily, especially those with steps which are not at all welcoming to those on four wheels.

two girls in formal wear sat at a table and smiling into camera with arms around each other girl on the left is a wheelchair user

Our freedom of movement is hindered in other ways too. For example, there can be a lack of accessible seating in pubs with high tables and high chairs, especially if you don’t have the ability to transfer out of your chair freely. Even accessible toilets are often too narrow for smaller manual chairs as opposed to the larger power chairs. I’ve experienced this on more than one occasion where I’ve had to leave the door open while emptying my catheter bag, which is utterly detrimental to one’s dignity. Not only is our right to move freely without impingement from anyone or anything impeded, but also one’s right to privacy is violated.

For those without the choice to drive due to a disability, there is a lack of resources to move within communities and beyond due to poor transportation options, again furthering isolation. Ramps for wheelchair access are often broken too. My first encounter with this situation was a year and a half after my accident when I arrived at the bus station in the early hours of the morning. It was to my horror that I discovered this accessibility issue that as an able-bodied individual, I had not been faced with before. If it had not been for the kindness of two random gentlemen who graciously carried me on and off the public transport, I would have remained stranded. Many disabled people face these battles every single day.

If you are organising a social event and there is a friend in the group with mobility issues, there are precautions that can be taken to minimise frustration and heartache. Research your surroundings where possible and plan ahead! Simple ideas that I would advise to minimise problems include ringing ahead to make sure elevators are working, there are wheelchair facilities present and tables are at a suitable height. Opting for open spaces can also be a good idea. If you’re travelling using public transport, it might also be a good idea to call ahead prior to journeys and make sure ramps are available.

Christmas can be a very expensive time for many. Both financial and accessibility issues for disabled people mean that social gathering are often seen as a luxury rather than a necessity; a vicious cycle. However, being mindful of the issues disabled people can face and doing your best to accommodate these can be one way of making Christmas a more inclusive and sociable time for all.

Season’s greetings and enjoy the gatherings!!!

Do you have any tips for organising or attending social gatherings when you have a disability? Share them in the comments below!

Replies

  • CaderMacCaderMac Posts: 105Member Pioneering
    Thank you @gervelle for a lovely and thoughtful blog. 

    Euan's Guide is a fantastic resource which is a big help when researching new places or venues when you have to worry about accessibility. 

    Cader x 
  • gervellegervelle Posts: 4Member Connected
    Thanks Cader, appreciate your comment and resource info!Check out my blog spinalcordinjury.ie for other info and resources!


    Geri
  • thespicemanthespiceman Posts: 5,031Community champion Disability Gamechanger
    Hello @gervelle thank you for writing this.  It brings it home to me how people cope.  I have this exact problem deciding how to get about and try not you know be differcult in these sort of circumstances.  No one wants to make a fuss and be awkward and try to interact with others.  I do understand this situation clearly and wish others would just be patient and tolerant.  We all want be part of a social society but it is so hard and I have found over a long period of time just do not bother going out.  Long time ago I was part of a support group who all were disabled and had a range of issues and problems to cope with if going out.  I had to make sure adequate social outings that I organised were suitable for every one.  This included access for wheelchairs and toilets.  Plus making sure that everybody could get there.  I would often have several people in my car who could and would not use public transport.  Taxis was the answer for some.  Spent a huge amount of time organising and trying to plan social outings.  I believed in helping many people to give them a social life.  The big issue were the places limited to go to.  Now that I think is the problem now.  Especially this time of year.  I am one who does not like driving in the dark and with the cold weather.  I know it is a excuse but lately finding harder to interact.  Recent event asked to go.  Being in a pub as I have an addiction history found hard but I did it.  Yet it is finding people like myself to be compatible with.  I try and do understand myself more and more.  The other day went to lunch half hour the people I am sitting with gone and finished their meal.  I am still eating.  On my own no chat just a few words.  I am of a age just have a pleasant lunch but am slow and plodding in my ways.  I do not know what to do with myself.  As you get older the social aspect of life vanishes well it does in my life.  I just do not know why.  I hope and wish you the best and thank you for your piece.
  • [Deleted User][Deleted User] Posts: 689 Listener
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  • MargiMargi Posts: 6Member Listener
    edited November 2017
    Gerville a great post......been there

  • Jules57Jules57 Posts: 2Member Listener
    I am 60 years of age and have been back living in Glasgow for the last 10 years. I have severe COPD and have BiPolar2 disorder. I suffer from stress, anxiety and depression. I am isolated for a number of reasons.
    1. I have no family or friends living here in the city and therefore social interaction is not an option as 
    2. Anxiety over going anywhere alone holds me back
    3. I have days where I am unable to get out the door due to my lungs, and on those good days that my lungs allow me to go out I have to have a mental balance that will get me over the door.
    4. When I do get out (on the rare occasion) I go hyper due to the excitement of actually having social interaction. But... on those occasions I am constantly monitoring myself as my excitement as I will call it will often set me apart as being weird.
    5. Struggling each day, juggling my mental and physical health can be so draining that even if I have the physical energy I may not manage to muster up the mental energy I need.
    Life is very lonely, I just thank the invention of the internet to allow me to continue with any kind of interaction or those dark days, weeks or months would see me ending what life I have left
  • gervellegervelle Posts: 4Member Connected
    It sounds very tough, stay connected to online forums. I read a lot and have found great satisfaction in writing and art.Best wishes always,Gervelle

  • Jules57Jules57 Posts: 2Member Listener
    Thanks, I have tried writing but find it hard to stay focussed so am thinking about starting a video blog as a self help. I believe it will be a good therapy for me and I hope in some small way may help others particularly with coping mechanisms but I have no idea how or where to do it. Just think it would be better to talk to a screen rather than talking to myself
  • Barrylad1957Barrylad1957 Posts: 100Member Courageous
    @gervelle,
    Hello, and thank you for a detailed and readable account. As a person who self-isolates due to non-physical reasons, I can only imagine how horrible it must be to have these restrictions imposed upon someone so young, and especially for someone who had an active life before her accident. I'm 60, and have gotten used to how I manage unavoidable social contact, such as at this time of year (families/friends, etc.,), but since becoming too unwell to work last year, I have been moved into social housing specifically for people with disabilities, both physical and non-physical. I have consequently been made aware of how very difficult it is for those with limited physical ability to do the things which I can manage easily when the need arises. I'm ashamed to admit that, before coming to live here, and making friends with a few people who rely on wheelchairs and other aids to do everyday things, such as go to certain shops, attend social functions and interact with their contemporaries, I hadnt given it much thought, in all honesty; but, seeing their daily struggles, and reading accounts such as yours, has been one of the ways in which I have come to realise how fortunate I am, but, everything you've said in your post about public access, access to social community areas and ease of access to toilets, compromised dignity and such, are 100% right. I recently was asked to take a neighbour on a reasonably short bus/train/bus journey so she could attend a family christening, and I was shocked at the lack of consideration and amenity almost everywhere we went - so shocked in fact, that I was relieved that I didnt have to bring her home as she was staying with family for a few days after the function. I suppose if politicians and civil servants were prevailed upon to spend a few days of their working week doing so from a wheelchair, then the 'powers that be' might get an insight into what is required for members of our communities who are physically disabled. I was also recently prevailed upon to travel alone to Doncaster from the Wirral where I live by public transport, and saw a few people with obvious disability struggling to board/disembark from trains and buses, and negotiate platforms, etc. In one station in Yorkshire during change-over, I had four minutes to get to my connection 2 platforms away - if I had been a wheelchair user, I'd have been stranded.
    Your attitude towards these social hurdles is very brave. We can only hope that the situation for those in our society who are disabled, and/or vulnerable will improve. Keep on doing what youre doing - its great that you can still find the heart and drive to overcome your own troubles and find it in yourself to help others. Nice one.
  • TopkittenTopkitten Posts: 994Member Pioneering
    I find that trying to stay positive about things, especially at the moment, is extremely difficult. I suppose some people, even some disabled, might think I am lucky. I am not paralysed. I can get about the house ok most of the time. I can drive and even go out and mix with people (with varying degrees of success) because I can walk a bit. I am not autistic or bipolar and my MH issues are, in theory, treatable. Yet I find life so difficult because I have absolutely zero support. It seems that in East Anglia there are few people like me and even on Outsiders I was one of only 2 or 3 in the area.

    Most of my socialising issues are the fault of my GP who decided to make me effectively housebound for 2 years. I have never recovered from that. I go through phases or trying to get out more and then being too afraid to. Even if I do go out often the physical blocks that occur because of the design of an old town like mine are simply too much to overcome. Moving through crowds at weekends and in the run up to xmas are just too much and I just shy away from even thinking about it. The condescension or over-protectiveness of healthy people when I am using the wheelchair or scooter is also too much to cope with. All this assumes I can even find a parking place large enough and close enough to allow me to even get to the places I need to. Even blue badges cannot be used everywhere or if people simply park in all the available places when they either don't qualify or don't need to.

    They have special late night shopping times for people who work. How about 'disabled only' days for us.

    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.
  • May07May07 Posts: 8Member Connected
    Isolation n loneliness are harder than the dissability of being in a wheel chair to cope with I went from a happy bubbly go getter to a sad lonely widow is the space of 10 months after my husband battles glioblstoma multiforme grade 4 terminal brain cancer I life jst stopped fruends dissappear n ta left alone if I had a group in my area I would attend jst repeating the same day over n over is soul destroying I pray even tho I hold no religious belief I pray to the souls to bring back kindness nothing is more precious than time it's the greatest gift you can give someone for once you've used your time you can never get it back.. Smile u may be the only one who has that day & smile is universal no matter what language you speak one race the HUMAN RACE 
  • [Deleted User][Deleted User] Posts: 689 Listener
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  • BEMBEM Posts: 6Member Listener
    Hello dear friends.This is an interesting topic which affects many people everywhere. I am currently studying at University of Stirling. I am psychologist and other things. It is normal to feel issolation, overall, if the person lives far of his or her family and friends. Everybody should believe in himself or herself. Many times, not always, it is caused just because the thoughts of the person. Try to go outside. Try to do activities in which you feel ok. I know that many times the society ignores you, but you should be harder than the rest of the people. I know it is not easy. I am also a person with a disability, and nobody give a pound for me, but I cannot stop to try do things, because if I do not do it for me, nobody is going to do it for me. I mean that you must be cleverer that society and look for other resources. We can do a group to meet once per month. What do you think?


  • [Deleted User][Deleted User] Posts: 689 Listener
    The user and all related content has been deleted.
  • BEMBEM Posts: 6Member Listener
    Jules57 said:
    I am 60 years of age and have been back living in Glasgow for the last 10 years. I have severe COPD and have BiPolar2 disorder. I suffer from stress, anxiety and depression. I am isolated for a number of reasons.
    1. I have no family or friends living here in the city and therefore social interaction is not an option as 
    2. Anxiety over going anywhere alone holds me back
    3. I have days where I am unable to get out the door due to my lungs, and on those good days that my lungs allow me to go out I have to have a mental balance that will get me over the door.
    4. When I do get out (on the rare occasion) I go hyper due to the excitement of actually having social interaction. But... on those occasions I am constantly monitoring myself as my excitement as I will call it will often set me apart as being weird.
    5. Struggling each day, juggling my mental and physical health can be so draining that even if I have the physical energy I may not manage to muster up the mental energy I need.
    Life is very lonely, I just thank the invention of the internet to allow me to continue with any kind of interaction or those dark days, weeks or months would see me ending what life I have left

    "Be kind to yourself. Be gente with your soul. Learn to accept yourself, and love yourself for all that you already are."

    Hi dear Friends. I am currently studying at Stirling University. I am psychologist and other things. Think that live is not easy. I live very far of my family. I also have a disability It have not to do a way to stop you anyway. Look the way to look for a good activity for you. Write everynight three things that you did well that day. I am ser you did much more of three. We can make a group to meet at least once per month. What do you think?
  • BEMBEM Posts: 6Member Listener
    Hello dear friends.This is an interesting topic which affects many people everywhere. I am currently studying at University of Stirling. I am psychologist and other things. It is normal to feel issolation, overall, if the person lives far ofhis or her family and friends. Everybody should believe in himself or herlself. Many times, not always, it is caused just because the thoughts of the person. Try to go outside. Try to do activoties in wwhich you feel ok. I know that many times the societuy ignores you, but you should be harder than the rest of the preople. I know it is not easy. I am also a person with a disability, and nobody give a pound for me, but I cannot stop to try do things, because if I do not do it for me, nobody is going to do it for me. I mean that you must be cleverer thsat spciety and look for other resources. We can do a group to meet once per month. What do you think?


  • thespicemanthespiceman Posts: 5,031Community champion Disability Gamechanger
    [email protected] Thank you for writing about social isolation.  How we can be cleverer how can we be smarter?.  This is interesting because it is all about how we are perceived.  I will always helps others especially those in our community.  As we go on with our lives and go ahead and make social interaction with others.  They will always be those who still will treat us with unease and look at us as different.  Why and where does that come from?  Take one small example from my life story.  Group of disabled going out to a bistro for a meal.  I have checked with bistro told them about us.  Soon as we arrived put into a corner no room for wheelchairs.  I explained can we have another table please no was the reply.  Why I enquired well ? Ended up leaving so went else where and the attitude goes on.  No answer.  All of us are trying to do things but we all are trying to help ourselves when we go into a social situation.  The problem is them the people out there who cause extreme differculties for each of us.  In all my time I will and have experienced so much stress and excess baggage regarding my social life.  All I want is just peace and a good time but all I get is hassle from complete strangers wanting to know more about my disability.  Why are you like that ?  It still going on
  • [Deleted User][Deleted User] Posts: 689 Listener
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  • deedeexdeedeex Posts: 3Member Listener
    Topkitten said:
    I find that trying to stay positive about things, especially at the moment, is extremely difficult. I suppose some people, even some disabled, might think I am lucky. I am not paralysed. I can get about the house ok most of the time. I can drive and even go out and mix with people (with varying degrees of success) because I can walk a bit. I am not autistic or bipolar and my MH issues are, in theory, treatable. Yet I find life so difficult because I have absolutely zero support. It seems that in East Anglia there are few people like me and even on Outsiders I was one of only 2 or 3 in the area.

    Most of my socialising issues are the fault of my GP who decided to make me effectively housebound for 2 years. I have never recovered from that. I go through phases or trying to get out more and then being too afraid to. Even if I do go out often the physical blocks that occur because of the design of an old town like mine are simply too much to overcome. Moving through crowds at weekends and in the run up to xmas are just too much and I just shy away from even thinking about it. The condescension or over-protectiveness of healthy people when I am using the wheelchair or scooter is also too much to cope with. All this assumes I can even find a parking place large enough and close enough to allow me to even get to the places I need to. Even blue badges cannot be used everywhere or if people simply park in all the available places when they either don't qualify or don't need to.

    They have special late night shopping times for people who work. How about 'disabled only' days for us.

    TK

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