Viewing 14 posts - 1 through 14 (of 14 total)
  • #74105
    A Little Guidance would be appreciated

    I find myself faced with a bit of a quandary. Despite having a moderate to severe neuromuscular condition I still remain ambulant and stagger around from place to place despite, chronic fatuige and general physical unpleasentness after walking even a short distance. I have been struggling valiantly for years, but it occurred to me who is it benefiting? Just my own narcisicm. I recently plucked up the courage to go for a wheelchair assessment for a powered wheelchair and despite my inital misgivings it turned out to be a real eye-opener.

    I know being ambulant is a blessing and I’m very lucky, but frankly walking everywhere is beginning to take its toll and consequently is impeading my ability to go out and do things. Therefore, after much deliberation have decided to sacrifice my DLA for a chiar. However, part of me feels like a charlatan as I can still walk and for some reason my conscience seems to bother me. I would hate for people to think I’m faking or…whatever.
    Any comments would be welcome positive or negative.

    Thanks.

    Mark

    Mark117
    Participant
    Posts: 24
    Joined: 29/11/2010
    #83218
    Re: A Little Guidance would be appreciated

    Hi Mark

    I can understand some of your dilemma although I went through the struggling to walk/using a wheelchair transition when I was in my early teens, quite some time ago :shock:

    I ended up having to walk along walls and really struggled to stop my head from falling back but looking back I think I should have used the wheelchair more at an earlier stage – perhaps I would have kept more muscle function in my neck rather pushing myself but I cannot go back and do things differently. However, I may have lost mobility and movement in my hips and back if I had not been using those muscles involved in walking. We are all different, in terms of conditions and even in how our conditions develop and affect us so what I am trying to say is go with what your body is telling you, what it can tolerate and take into consideration the effects on your social life.

    Try not to worry about what other people will think, I know this is not always easy but you have to do what is right for you.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #83219
    Re: A Little Guidance would be appreciated

    Don’t worry about what others think. If having a chair greatly improves your independence and mobility that is a good thing.

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    #83220
    Re: A Little Guidance would be appreciated

    @mark117 wrote:

    I……….. but frankly walking everywhere is beginning to take its toll and consequently is impeading my ability to go out and do things. Therefore, after much deliberation have decided to sacrifice my DLA for a chiar. However, part of me feels like a charlatan as I can still walk and for some reason my conscience seems to bother me. I would hate for people to think I’m faking or…whatever.
    Any comments would be welcome positive or negative.Mark

    Welcome back Mark.

    It is good that you have obviously spent such a lot of time weighing up this difficult decision.

    …..it speaks volumes where you say that it is “taking it’s toll” and now affecting all sorts of other
    aspects of your life. Maybe the time has come to sit back and indulge your body. It is what the
    DLA is for, to give you the freedom to make these decisions.

    Think a little more to be absolutely sure, but I am sure you will get to the right place.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #83221
    Re: A Little Guidance would be appreciated

    I went through the same realisation but I ask who says that you have to be ‘wheelchair bound’ (hate that phrase) to need a wheelchair? :)

    What about second breakfast?

    IG: https://www.instagram.com/kissofdarkness1/

    kissofdarkness
    Participant
    Posts: 266
    Joined: 01/10/2010
    #83216
    Re: A Little Guidance would be appreciated

    Hi there Mark,

    I am not a person with MD, however my partner is, and I know in his past he had this issue as well..

    Unfortunately there was a point that pushed him into using a chair part time, for long distances, but he would still walk around at home and for short distances.. and gradually became more and more reliant on the chair.

    The point was, when he fell awkwardly and broke his femur (thighbone). This was a big deal as it meant he was in traction and total bedrest for some time, and this affected greatly the rest of his body. He was then in rehabilitation for at least 2 months. This was at the age of about 15.

    If you don’t like wheelchair bound (and this term is deemed politically incorrect) then you can try a “permanent wheelchair user” or “reliant upon a wheelchair”.

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #83215
    Re: A Little Guidance would be appreciated

    @angelicprincess wrote:

    If you don’t like wheelchair bound (and this term is deemed politically incorrect).

    Is it? Wow never knew that – thats my thing I didn’t know I didn’t know for today.

    How does “Occasional Wheelchair User” sit with you Mark. Like several, I am always in a wheelchair whenever I leave the house, I waddle around the house using a dining chair as a frame [and handy carrier].

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #83217
    Re: A Little Guidance would be appreciated

    Ahh yes AMG, apparently in non-disability land, we have to tread very carefully in order to not offend you people with a disability. This is something that I am torn on.. I see that we shouldn’t offend, but then I think some people take it a little too far…

    I will find you a list that the Physical Disability Council here has put together of what terms you can and cannot use when talking about people with a disability. The PC crowd (politically correct) have gone mad.

    “Crip” – “Cripple” – “Disabled Person” – “Paralysed Man” – all are politically incorrect, and are not person first language. You can be a person with a disability, or a person with paralysis, muscular dystrophy, multiple sclerosis, cerebral palsy etc, but you are always the PERSON first.

    As for wheelchair bound, apparently you aren’t tied into your wheelchair 24/7. You can choose to be in the wheelchair or out of the wheelchair, hence you are a wheelchair user.

    You don’t have a disabled taxi or a disabled parking space. They both work fine. They are an accessible taxi or parking space.

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #83223
    Re: A Little Guidance would be appreciated

    Couldn’t find the PDC list, but found another one..

    http://www.northcott.com.au/uploaded/File/The%20Disability%20Language%20A-Z%20Guide.pdf

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #83224
    Re: A Little Guidance would be appreciated

    Terminology is not really about being PC – it’s more about accurately reflecting the lives of disabled people and being polite. I’ve been an equality trainer for donkey’s years and wheelchair terminology is pretty standardised (unlike other terminology).

    Wheelchair bound – only used for sexual tying and actual binding another to their wheelchair usually for sexual purposes.

    Confined to a wheelchair – wheelchairs are freeing and liberating whereas confinement means restricted so it’s out of date (in the old days of ye olde baskets they were possibly quite confining!) . Never used.

    Wheelchair User – nice and simple meaning uses a wheelchair, used by most people to describe their way of moving.
    – sub groups exist where a persona my add on: ‘occasional, full time / permanent, etc etc)

    Then it’s challenging people’s assumptions such as ‘all wheelchair users can’t walk or stand or feel things’ – that is a judgement that is impolite and inaccurate for most people – especially those of us with MD who dip in and out of using a chair if we feel more tired or for long distances etc’.

    Wheelchairs are funky, liberating, functional, useful and often seen as part of them just as an arm or leg if you use one all the time.

    Take wheelchair dancers or athletes for example – they have to become one with their chair to maximise movement and mobility and perfect their art.

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #83225
    Re: A Little Guidance would be appreciated

    Thank you everyone for your insightful comments. I recently walked a certain distance up a hill/incline and the pain I felt in my legs coupled with the disconcerting sensation in my chest/breathing basically clinched it. I felt as though somebody had strapped 5gks to my legs or they were somehow encased in cement. I should not be putting my body through these motions when frankly I can be in a chair.

    I’m probably the most un-politicolly correct person you could meet. I have somewhat 1950s mentality. I always refer to myself as crippled or a cripple. (Cripple: somebody whose use of a limb or limbs is impaired”) As that is how I consider myself. I would never address a fellow disabled person as that. However, phrases like handicapped, handy-capable, less-able, differently-able I find nauseating. Disabled or not you are what you are. Accept it, embrace it and move on. It is true we are just like every other human being on the planet and have the same legal, civil and & human rights, emotional, psychological and sexual needs. I’m reminded of a quote from The Mercehent of Venice but replace the word Jew with disabled and the word Christian with non-disabled and its the same point.

    “I’m a Jew. Hath not a Jew eyes? Hath not a Jew hands, organs, dimensions, senses, affections, passions; fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer as a Christian is? If you prick us do we not bleed? If you tickle us do we not laugh? If you poison us do we not die? And if you wrong us shall we not revenge? If we are like you in the rest, we will resemble you in that. If a Jew wrong a Christian, what is his humility?”

    I will probably apply for my chair in the New Year, but would like to see what my local wheelchair services can offer me before I sacrifice my DLA.

    Anyway, Merry Christmas and happy new year to one and all.

    Mark117
    Participant
    Posts: 24
    Joined: 29/11/2010
    #83226
    Re: A Little Guidance would be appreciated

    Mark, there is a term for the reclaiming of “un-pc language” by people with disabilities for their own use.. I just can’t think what it is at the moment.

    Perhaps un-pc is not the right term.. but I think you know what I mean. I personally find any terminology designed to hurt or disrespect someone intentionally is wrong.. that includes any form of discriminatory language, be it against a particular race, a particular cultural group, a particular gender, a particular sexual preference.. etc etc etc.

    I do dislike the term differently abled.. I detest it. My partner has a disability. He is not disabled. He is not incapacitated. His disability involves him not being able to do many things for himself, and not being able to walk, but he can still make his own decisions, he can still verbalise his needs and wants, he can still talk.. there are certain daily living tasks he can still complete for himself, and whilstever he can, he will do these things for himself.

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #83222
    Re: A Little Guidance would be appreciated

    Sometimes we just need to call a spade a spade. :ugeek:

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #83227
    Re: A Little Guidance would be appreciated

    Mark,

    Accepting that you need to use a wheelchair can be really tough, but as others have said, if you see it as liberating and helpful that is likley to help you. Try to stop thinking like a non disabled person (aka a person who isn’t yet disabled). It’s difficult because we are mostly conditioned into thinking that using a wheelchair is a terrible, terrible thing. But really it isn’t. And you don’t need to use it all the time. And you don’t need to worry what other people think – just learn to stare right back at them. If a wheelchair isn’t the answer for you then maybe a scooter would be. I found that very helpful in my transition to starting to use a powerchair. The longer wheelbase makes it stable on hills, and the fact that it has handles and a relatively high seat can make it easier to get up from. I always used it around town and then parked it outside a shop and walked inside to browse. It did mean that everyone always knew where I was all the time, but maybe that can be an advantage – depending on your circumstances.

    I started using a manual chair when I was 14, but I was never really able to self propel. I used the scooter from age 18 and a manual chair full time when I was 25. Having an attractive, lightweight manual that I am able to propel at least a little bit myself is an advantage. I use a power chair at work – a Balder with all the bells and whistles: stand up, rise, tilt etc.

    And as for terminology I prefer disabled person – going along with the social model of disability. I tend to cringe at other terms but I also realise that everyone has their own way. If I’m chatting with disabled friends we tend to use rather less “PC” terms to talk about ourselves but I would never use those when talking to someone I didn’t know well.

    All the best with your trip to the wheelchair service. I also recommend getting to something like the mobility roadshow and trying out as many different chairs as you can. Sometimes the private reps can give you much better advice than your wheelchair service although you may find it useful to get a loan chair from the wheelchair service as a starter and just see how you get on, before using a voucher or motability to get something else.

    Ameena

    Ameena
    Participant
    Posts: 33
    Joined: 29/01/2011
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