Why is life made harder for disabled people? Continued — Scope | Disability forum
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Why is life made harder for disabled people? Continued

I am new to caring - I have been looking after a friend for 24 hrs once a week for the past couple of months. I must say how shocked I am at how appalling the system is for disabled people, obviously I am only just learning. My friend has cerebral palsy and is wheelchair bound and only has the use of one hand. They need someone with them 24/7, to take care of them i.e. wash them, feed them, hoist them to bed, take them out to appointments, clean the house etc. This is just a little background. The main point I wanted to make was; I have recently learned that my friends care package will be or likely to be changing in 2015 which means they will no longer be entitled to 24 hour carers due to budget cuts. So after they have their dinner at 1pm say, they would be left alone until 4pm (say) to cut the cost of a carer being present. Utterly shocking. Leaving a severely disabled person alone because the government are looking for areas to make cut backs? Let me tell you something, cutting back on disability funding is not it - look else where. I realise there are people who cheat the system but I am focusing on the people like my friend, and please, I am new to it all so feel free to enlighten me. My friend being left alone would be out of the question. In my care they vomited in their sleep in the middle of the night. Fortunately I was awake and I went straight to their aid. Now what if they were alone? Are they expected to wait around for help to arrive while they lie in a pile of vomit? What if they had chocked to death? Panic button you say? Not as effective as a human I am afraid. Today in society we must adhere to policy on equality, discrimination and prejudice - so why are the most vulnerable people living in a world that seems to make life as difficult as possible for them (more so!)? Being disabled makes life hard, as most people will appreciate, but these are a few things that I have learned with my friend: getting my friend up in the morning, hoisting them out of bed will take around 10 to 15 minutes. In the morning I can get out of my bed in 2 seconds. Dressing my friend takes about 30 minutes, I can get dressed in 2 minutes. Putting their coat on to go out takes about 5 minutes, I put my coat on and it takes 5 seconds. When my friend eats their dinner, they take twice as long as me as they only have use of one hand. When my friend and I go out together to the park or Tesco, people look at them then turn away quickly. On the route to Tesco I know which traffic lights will take 30 seconds to change and which will take 4 or 5 minutes, no really , they do take ages - which is not much fun when it is cold and raining. We would love to gallop quickly across the road but the electric wheelchair is heavy and won't go very fast. The wheelchair goes slower uphill, and when it is low on battery it will not even get up a dropped kerb without my assistance. Bumps in the pavement make journeys uncomfortable and are taxing on the wheelchair. Mud and dead leaves are a nightmare to clean off the tracking on the wheels, which takes about 30 min. No we do not want dog poo on the nice clean carpet. We went out for lunch in a pub in town the other day, before we could get a drink we noticed the table wasn't high enough for the wheelchair to fit under. So I was on my hands and knees making minor adjustments for a few minutes as people watch like you are mad, no one offers to help of course and my friend is apologising for being a nuisance. They are not a nuisance, just for the record. After a meal we go around some of the shops and people have no patience with wheelchairs at all. Oh I am so sorry they are not as fast and agile as legs! But over taking someone in a wheelchair who is in a queue is not acceptable! I asked my friend later that day when the last time she went on holiday was - 6 years ago they replied. My friend's only means of travel is a wheelchair friendly bus or taxi or the wheelchair itself. Taxi's are extremely expensive (and charge an extra


  • panther
    panther Member Posts: 251 Courageous
    Welcome to the disabled persons world. One that currently is filled with a lot of uncertainty of what the future holds after all the welfare cuts/changes and local council funding cuts.
    It's a frightening time for all of us at the moment.
  • LilyW
    LilyW Member Posts: 18
    I donrt wwant to seem vain or anyththing but i am 15 and have mixed cp; quad mostkly and thhhsi ii ns so true!! becuase i am like your firend and i trty tooo get on woith it and not compllain but i haved had a really bad d ay today abnd i just need to tellk someone. fifrst i woke upu and mybed door was stuck so i felt reakly bad asking myy sisiter to help me whhen sh e haddahardly wwwwwwwwoken up and then i finally gogogt oout of bed and into my inndoor chair onlyto find that the power had run down becaise alllthough i had plppugged it tintp charge, i had not swihtced the power on soo my sister had to push my chair ((she is aMMazing btw!!!).
    The n later, on the way back from church, my sister hasd a massive arggument with soome bioys over me becaiuse they ahd just called me some names and iii justtg cant takee offence but she just snapps because she takes offence sort of onn my behalf. then i rolled my walker thriough ahugepuddle and my walk boots got soaked because the
    water went thhtriough the foam. then some more boys laughed a tme as i tried to gget up some steps (impossiuble - i wenrt the long way round too avoid them) and byt the time we got to the carr I was soo exhausted thatg i wsas sick (everywhere) and i felt so bad for my ddad having to cllean my walker; i wishh taht i could have done iitt myself.
    I amm nnow in bed and i still haev homewrok to do but i just can't because i havev hahdb siuch an awful day:(
  • Nikkinakinoonoo
    Nikkinakinoonoo Member Posts: 3
    It's just so wrong, wrong, wrong. The most vulnerable people are brushed under the carpet and told to just "get on with it". The sad thing is, disabled people do! My friend never moans about anything. They never say, "I don't feel like getting out of bed today". I feel like I am going out of my mind, if this is the way life is for disabled people now, at this day and age, what hope is there? Do people care? Don't you just feel like you are banging your head against a brick wall? I am just venting out my frustration at the moment, but I will have along hard think and ask myself "what can I do?". Good quality of life is deserved here and sadly it all comes down to money. By the way, footballers are paid too much money! I do apologise for ranting so much, everyone wants the world to be fair. In a world of so many people, it just seems so few people care. I am sorry for venting out my anger on this website. I do mean well really!
  • James2
    James2 Member Posts: 16
    When i joined seven-side Tritons (a swimming club ) they diddent understand that i had cp .Which made my life very hard and was a drag to go swimming .
  • LilyW
    LilyW Member Posts: 18
    Do you swim now? I like swimming bbecause thhhhhhhhhhhhhhhw e weight is taken off my fetet but i have to be carefulf of my ears beccUSE i am deqf.


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