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Wheelchair users

Topkitten
Topkitten Community member Posts: 1,285 Pioneering
I started to watch the Winter Clothing tips for wheelchair users and it struck me that the person giving them was so much the archetypal view of a wheelchair user. Maybe it is the common situation for such a person to have a lot of mobility from the waist up but for me, and probably others, I just don't fit the type.

My problems and pain are all related to spinal movement, especially bending and twisting. I cannot move a wheelchair in the fashion the lady in the video did as everything I do has to be measured and careful and consequently slow. Going beyond a snails pace causes me so many problems. It also prevents me doing so many things some users can. Sports and anything requiring quick movement are just impossible. Currently even using it causes me too much pain and even when I can use it my grip is suspect due to previous cervical damage and surgery.

I wonder how many others look at people like that lady and think "I wish.........".

It also seems such a shame that the healthy person's view of wheelchair users is so perpetuated by such videos. I find that the assumptions about what I can do with my wheelchair, assuming they even notice me at all, is at such a high level that I can never hope to reach. I find it depresses me at times that somehow it must be my fault I cannot do such things.

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.

Comments

  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    Hi TK

    For sure the able bodied persons view of a wheelchair user is probably not helped with all the para sport and wheel chair racers, thinking that every user can do these things, when in reality it just isn't so.

    It is not your fault that you cannot do these things, life has dealt you a different hand

    My wife gets annoyed at me when I refuse to remember things in the past. It is of no use to me to go back in time, I don't want to remember what I could do before being trapped in a fire.
    I have to move forward in the best way I can, find new ways to do things and find things to replace what I have lost.
    I seldom see the few friends I have, I don't want their pity, I don't want their help to do the things I can't, if it needs to be done I will find a way.

    Nobody can really understand what we go through and I certainly wouldn't want to put others through it. I am alive which is better than the alternative. I am here for a reason, I don't know what that reason is and I don't need to. I will do my best every day to be the best I can be.

    CR
    Be all you can be, make  every day count. Namaste
  • mossycow
    mossycow Scope Member Posts: 500 Pioneering
    I really understand as in my wheelchair folks assume upper body strength when actually I'm the opposite. It was only one person's video she has made of her position, she can't really comment on others.

    In terms of:

    " wonder how many others look at people like that lady and think "I wish.........".

    That is a dangerous fantasy. We can't judge a person on their best day. We have no idea what she has been through and goes through every day.  So sympathetic at being frustrated at lack of function. I have those days too. Personally I feel we can't judge what the life of others is like and I'm certain that comparing level of disability is so unhelpful. 

    But God, yeah I understand 
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @mossycow , I would dearly love to have that sort of mobility on any day. Even my absolutely brilliant and wonderful days fall well short of her actions. I appreciate your point but I cannot think of any disease or condition (including potentially fatal ones) that I wouldn't jump at the chance to swap mine for. At least a lot of others have a chance (however small) of a cure.

    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.
  • mossycow
    mossycow Scope Member Posts: 500 Pioneering
    Sounds like you're having an awful time @Topkitten (still love that name).

    How's today going? 
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Things have been a little better of late though the surgery business is dragging me down a little.

    The chemist is working with me to try to resolve the medication problems and I am slowly adjusting to coping with it better. Still makes things a bit tougher than usual but I am generally more balanced at the moment, Just not looking forward to turning 61 in a couple of weeks and definitely will be on a downer as xmas gets closer.

    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.
  • ryzykant_travel
    ryzykant_travel Community member Posts: 1 Listener
    edited August 2018
    Hi guys!
    Do you know if I can get a subsidy for a wheelchair?
    I want to buy a wheelchair at https://blumil.com/shop/.
    I can not find any information about funding.
    The whole price is too high for me ☹


  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    edited August 2018
    Hi @ryzykant_travel, and welcome!

    You could try searching for grants here to see if there are any you could apply for. If you're based in the UK, this NHS page on getting a wheelchair or scooter may also be helpful.
  • ScottBorno
    ScottBorno Community member Posts: 7 Listener
    Actually my upper body strength is really good and I move about in grass, gravel, etc quite well.  Beach sand, mud and snow/ice shut me down.  I run my chair (easily!) Up a 4" sidewalk curb and run it back down.  My problem is:. I'm breaking the all the time!  I have to buy a new one every year.  I guess their image of "everyday function" differs from mine.  Why can't they make one that lasts?
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @ScottBorno, I certainly found it easier the more I used mine and am sure that with prolonged use it builds up the strength in upper body and arms making it even easier. The difficulties are in the beginning until you get used to it.

    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.
  • kazzy1
    kazzy1 Community member Posts: 31 Connected

    I have issues with sleeves since I self propel. The idiotic things keep getting in the way.

    I also hate the lovely wheelchair wheel flicks we all get from the roads

  • anurag10
    anurag10 Community member Posts: 2 Connected
    edited June 2019
    Hi,

    Can you please help me select the best suited wheelchair ? I need a wheelchair which is comfortable and which i can manage myself as I live alone at home the whole day after kids leave for work. I am looking for a wheelchair in around $1000-1500. Thanks in advance.
  • anthony_tawaproducts
    anthony_tawaproducts Community member Posts: 1 Listener
    edited June 2020
    Looking for best suited wheelchair? Here's our shop where you can find affordable and  wheelchair and other stuffs. [Removed by moderator]
  • Ronni
    Ronni Community member Posts: 161 Pioneering
    I find it odd that ad links like above come on 2 seconds after someone asks about something they just happen to sell. Are they watching us..


  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    anurag10 said:
    Hi,

    Can you please help me select the best suited wheelchair ? I need a wheelchair which is comfortable and which i can manage myself as I live alone at home the whole day after kids leave for work. I am looking for a wheelchair in around $1000-1500. Thanks in advance.

    Are you in USA? In UK we have Wheelchair Services, who have trained therapists who advise on the best chair for us...no selling.....watch out for that!
  • littleacorn
    littleacorn Community member Posts: 367 Pioneering
    Or do wheelchair services only give you what they have in stock. My experience is they dont and cant look outside the box!
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @littleacorn, you are correct. There are a limited number of suppliers that give them special rates (i.e. cheap) and the assessors are not always sufficiently qualified and/or experienced to define needs properly. I met a lady in town one day trying to push her elderly mother in her new wheelchair provided by the current system. She was having great difficulty because her mother feet kept going under the chair simply because it had been supplied without footrests. The expected time for a replacement / usable chair was a minimum 3 months. The footrests had not been supplied because the patient had not asked for them and had assumed they would be provided by any competent assessor.

    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.
  • littleacorn
    littleacorn Community member Posts: 367 Pioneering
    Why is this allowed to happen?
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @littleacorn, because no one in Social Services is actually interested in patient health or abilities and, due to internal complaints procedures, it can always be covered up. They are doing their 9 to 5 job and getting paid so that they can enjoy their little lives and few, if any, care abut doing a good job. Unfortunately this attitude pervades the NHS as a whole and was exhibited by 60,000 to 80,000 staff during the so called "Corvid crisis" who refused to go to work until they received special concessions and perks. It is a shame that those that worked on regardless will always be tainted by the slur this implies due to no fault of their own.

    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.
  • littleacorn
    littleacorn Community member Posts: 367 Pioneering
    How can this be addressed at a national level or even a local level? One persons voice is never enough to change things for the better!

Brightness