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how do other wheelchair users spend their time?

kennykenny Member Posts: 77 Courageous
edited August 2016 in Disabled people
I have cp and am confined to a wheelchair, don't find it easy to make friends, and wonder how other disabled people who cannot work spend their time?

Replies

  • LokiLoki Member Posts: 3 Connected
    I'm not confined to a wheelchair but I spend a lot of my time bed or sofa  bound, need a chair to go out. Its really not t easy to make friends, I find people drift after a while when they find out you can't go out at a seconds notice. Online is pretty much the saviour of my sanity. 

    Tumblr is good (honestly it isn't just all teenagers) forums, games, anywhere I can reach out is good. 
    Craft-Addict 
  • kennykenny Member Posts: 77 Courageous
    Glad at least you have something, but its no consolation for being out in the real world
  • LokiLoki Member Posts: 3 Connected
    Yeah I know.  I miss going to gaming events and board game events and meeting people. I miss it, a lot, it sucks,  it really does.  I just hope some day I get back. To being able to socialise with people in the real world. For now I take what I can to stay sane.
    Craft-Addict 
  • kennykenny Member Posts: 77 Courageous
    Hope you and me, have a bit of good luck in the future we both deserve it!
  • newbornnewborn Member Posts: 683 Pioneering
    It would be good to get other peoples views, but I have long thought disabled people and older people (also prisoners and hospital patients) are a huge overlooked resource, as a voluntary or paid workforce .

    So many posters on Scope have wasted experience, skills, comprehension.  They, and the world, cannot squander such riches.

    Lots would like the interest, job satisfaction, and chance to contribute to society, and/or earn a little extra.    Prof Stephen Hawkins was an invaluable worker.   Dame Jane Chapman single handedly stopped a steamroller of momentum in the House of Lords, when she made a speech.   Neither of them could move unaided. 

    People can use technology to work, even in ten minute  bursts, even lying flat in bed, even blind, even deaf, even unable to move their hands, even unable to speak.     

    Some possibilities would be :  Mentor or instruct in areas of previous expertise, Monitor or mark students, Moderate online sites,   Watch cctv to alert and prevent crimes, abuses in care homes or in animal handling.   

    Study sections of potential evidence, to assist police.  Help coordinate chat groups.  Advise and encourage people who need confidence.   Arrange group self help .     Supplement with one to one attention, to support the efforts of others to coach or teach, children or adults, remedial or academic.

    Even, now there is 3D printing and c.a.d design, people could be lying in a bed and still inventing and constructing.    There are printers for body parts, printers for entire houses.   There is remotely controlled surgery, so a surgeon can be in another country, let alone running the theatre from home.    Medical staff can see customers and run tests on them, using technology.   

    Vulnerable and lonely people can have company. Fitness coaches who can't leave their own beds can supervise customers who can't leave home .   

    Profound or complex disability still leaves the essence of the person, not to be wasted. Who can predict the improbable friendships and understanding between people who somehow connect, in special schools, despite not being comprehensible to any others?   Online interactions can make similar opportunities to virtually meet others,  extending long after leaving special school. 

     A housebound ex teacher, or a carer spending long days alone with a dependent, might be ideal to do the matching and spot the signs that an isolated  sufferer is hitting it off in some way, in response to another person.   

    Sometimes, carers get no break because while they nod off, or snatch ten minutes to cook, their dependent may have a seizure, or may wake up.  Or, with alzheimers, may suddenly decide to wander out.  The carers could arrange to go online with a housebound person, just to take over the monitoring for a while, and send an alert if need be.   Carer gets a break, disabled person does a little stint of invaluable worthwhile work, without leaving his room.
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,472 Disability Gamechanger
    Becoming disabled opened up a completely new world for me, not one that I liked to begin with.

    I spent far too long focusing on what I could not do anymore instead of what I could do. There are so many new things to try and the world is your oyster. Being disabled hasn't stopped me, if anything it's given me the urge to try new things. I'm hoping to improve my photography skills and I'm not going to let my Ataxia stop me!
    Disability Gamechanger - 2019
  • siobhan1siobhan1 Member Posts: 77 Pioneering
    Until recently working, and looking after my family. My children stay with their dad in the week as there is no dropped kerbs or accessible taxis available in my small town so I can't get them to school. I've been increasingly ill so struggle to work but i read a lot, binge watch tv, I like board games and tabletop wargames and I have two friends who visit or I go to them. My best friends mum uses a wheelchair so his place is accessible. Most of my weekdays are spent at appointments- continuing physio at the gym, bladder instillations, costonchondral joint injections and checkups etc... or travelling to those via public transport and sleeping later on as it tires me out. I used to do all of this and work and now feel like I don't know how I managed it to be honest. Being honest with myself I didnt. I used to get a 2 hour flexi time credit for hospital but sometimes spent two hours there and a 6hr round trip travelling with train cancellations and assistance not showing up so by the time I left my job I was 52hrs down and no physical way of making it back up. I also felt very ill, mentally. Now I can manage my treatments and pace myself. I'm a good mum and I feel like I contribute to society by being a good parent and friend. I'm always at home to feed the birds or report things like water leaks on my street XD I just enjoy the moments of my life when I'm not in excruciating pain and it's taken me about 4 months to not feel guilty about this. 
  • newbornnewborn Member Posts: 683 Pioneering
    Siobhan 1 thanks for your interesting post. In future, please could you insert paragraphs please? It's a disability access issue, because some conditions mean a long block of unbroken text is hard/impossible to read.


  • newbornnewborn Member Posts: 683 Pioneering
    edited November 2018
    Above, I posted about how people can work from home even with limited stamina, as volunteers.  An example has just been publicised.

    By coincidence, the Be My Eyes phone app is featured in the current Waitrose newsletter.  It's international.

    Housebound people could add themselves to the list of volunteers, and be a help when a blind person needs a sighted person, somewhere,  to pick up a call for help. It might be reading the sell by date, or asking if this or that jumper is the blue one.
  • siobhan1siobhan1 Member Posts: 77 Pioneering
    newborn said:
    Above, I posted about how people can work from home even with limited stamina, as volunteers.  An example has just been publicised.

    By coincidence, the Be My Eyes phone app is featured in the current Waitrose newsletter.  It's international.

    Housebound people could add themselves to the list of volunteers, and be a help when a blind person needs a sighted person, somewhere,  to pick up a call for help. It might be reading the sell by date, or asking if this or that jumper is the blue one.
    I see what you mean... however, I think there could be a problem where someone was technically employed this way and making a tiny amount of money they wouldn't make enough to live on but would be employed for benefit purposes.

    I used to believe that there would always be a job I could do. I went from surveying construction sites to working in contact centres.

    Then I started to lose my voice a lot and got ocular migraines so even sat at a computer taking calls was impossible.

    With interstitial cystitis I could never guarantee I was at my desk or even on my way to work so was unreliable.

    I think the way forward is working for myself but the worry is always going to be whether I can make enough to support myself and I feel that's a huge barrier.

    If you can only work 2-3hrs a week you can potentially lose benefits unless you have been approved to do the work etc.

    Then it could be assumed you are well enough to work all the time.

    I feel like I have no break from my illness and barely am I even awake. I spend the rest of my time doing things I enjoy like people do on weekends or after work. Otherwise life would be completely unenjoyable.

    It's great that you are thinking of things people could do despite being ill or disabled though.
  • newbornnewborn Member Posts: 683 Pioneering
    Argghhhhhh........Nobody should be governed by inbuilt disability discrimination.    Sir Trevor Phillips ..... " Disablism is institutionalised and is worse, in it's effects on people's lives, than Racism."

    Siobhan1 if the conveyor belt designed benefit systems cannot comprehend the existence of fluctuating, variable, unpredictable types of disability, then the fault lies with the civil servants.   Simply by having such exclusionary schemes, they breach equal rights law and statutory duty.

    Will the new system be better?  Will it be possible to thwart the system? E.g go self employed, or agency, and require payments only in one lump sum quarterly?

    Your expertise and experience is a national as well as a personal resource.  But you alone will be informed about future ways to use it.

    Can your original skills be maximised now that surveys can be closer, better, by remotely controlled drone camera than by folk in hard hats tramping on site?   

     Councils, for example,  are vulnerable to challenge by failing to follow best practice and by failing to achieve best value for money, if they exclusively use the quill pen equivalent in carrying out their building regs checks.   

    At the same time, they are practicing unlawful employment restrictions, by failing to make reasonable adjustments. Unions don't like that, and they can fund cases.  (Which the useless discrimination quangos won't.  )  NB offering the alternative employment of being a call centre worker is not, not, not acceptable.

    Power to your elbow.




  • siobhan1siobhan1 Member Posts: 77 Pioneering
    edited November 2018
    newborn said:
    Argghhhhhh........Nobody should be governed by inbuilt disability discrimination.    Sir Trevor Phillips ..... " Disablism is institutionalised and is worse, in it's effects on people's lives, than Racism."

    Siobhan1 if the conveyor belt designed benefit systems cannot comprehend the existence of fluctuating, variable, unpredictable types of disability, then the fault lies with the civil servants.   Simply by having such exclusionary schemes, they breach equal rights law and statutory duty.

    Will the new system be better?  Will it be possible to thwart the system? E.g go self employed, or agency, and require payments only in one lump sum quarterly?

    Your expertise and experience is a national as well as a personal resource.  But you alone will be informed about future ways to use it.

    Can your original skills be maximised now that surveys can be closer, better, by remotely controlled drone camera than by folk in hard hats tramping on site?   

     Councils, for example,  are vulnerable to challenge by failing to follow best practice and by failing to achieve best value for money, if they exclusively use the quill pen equivalent in carrying out their building regs checks.   

    At the same time, they are practicing unlawful employment restrictions, by failing to make reasonable adjustments. Unions don't like that, and they can fund cases.  (Which the useless discrimination quangos won't.  )  NB offering the alternative employment of being a call centre worker is not, not, not acceptable.

    Power to your elbow.




    I completely agree on a lot of points here. I was an asbestos surveyor and I do believe that a lot of sampling etc could be replaced by non human technology to minimise risk of exposure but then so could the whole job as most management plans work off an algorithm of risk that a computer could do easily.
  • newbornnewborn Member Posts: 683 Pioneering
    Brilliant.   Sounds as if you could offer a service to work better, cheaper, safer than the quill pen.     The 'safer' part offers double advantages because of insurance, as well as the unbeatable argument that no organisation could justify continuing the discredited old methods including knowingly subjecting people to potentially fatal carcinogen exposure. 

    Although, you will know, I won't,  if the helicopter blades on the flying hover cameras would be problematic?    But I hear that other cameras are variants, including miniscule ones on wheels, or able to creep along underground cracks, so these would presumably be dropped into place from the 'mother ship' carrier drone, or else the customer would provide an unskilled operative, merely required to place the camera under the direction of the remote inspector??? 

    I'm in awe of the new technology. Without paying particular attention, I've become aware of, for example, a police speeding camera which is said to be able to work from up to 2 miles away, and resolution that is said to mean they can not only see that the driver is texting, but can also read the text.  If true, that is astonishing. 

    I had previously heard of cameras which run around below ground, obviating the need for inspection pits or for digging up lengths of drains or cables.  All this, plus the chance of an international  engineering career without standing in the rain, or getting on a plane! 

    I manage to be a naive optimistic cynic, which is quite a feat, but wouldn't it be great to envisage an immediate change, to being able to upgrade the entire  inspection and compliance regime?   No more Grenfell windows, 'secured' by a glue gun, when constructors know the camera is either watching every stage, or else could be sent running round inside the walls retrospectively. 

     No more  abuse, if hospitals and  care homes are cctv watched,  just as slaughter houses and police cells already must be.
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