To want to scream that Motability cars are NOT FREE!!!!!

[Mamaz0n]

Ihave just seen a programme on the BBC where they have yet again claimed someone recieved a "free car"

No they fucking didnt!

They have been given a lease hire vehicle under the motability scheme. It is not their car, they DO PAY for it and it is only for a certain period of time.

It pisses me off that people assume that being disabled is a sweet life with loads of freebies.
It isn't. far from it.

you would expect the BBC at least to get it right.

taxi would be best for your friend then minty. why would she want to fork out all the money on a car that sits in the drive.

that's not very nice, stickytoffeepud. Should she be housebound on the days she can get up? MM described the nightmare of public transport for her. Poor woman. I think she should certainly have the help she needs for independent travel when she can manage it.

And Knobcheese, don't know how much experience you have of taxis that can take wheelchairs, but in many areas they are few and far between, and taxi drivers are not often willing to lift someone in and out of wheelchair. All the constraints and difficulties around independent travel can just make it too much of a challenge. It is hugely liberating to just be able to go and do something yourself, without any organisation, waiting, asking etc. etc. You don't realise how awful it is not to have that ability, until you're in that position...

Problem for her is a lack of accessible taxis.

I was using her example as one to highlight how people with mobility needs may have multiple needs e.g. crutches/sticks and a wheelchair and a car. She most likely won't get a car but I know she would like to have the independence to just get in one and drive herself somewhere, rather than having to hope an accessible taxi is available for long enough, and at a cost she can afford, at the times she wants one.

I can see why she finds it frustrating though. When she got temporarily stranded she was so scared, and doesn't like being out beyond mid afternoon if she can get out now. The timetable promised an accessible bus at that time and didn't deliver one until she protested.

stickytoffeepud

Yeah she doesn't need to go shopping, buy clothes, buy medical supplies or anything and nor do her family. What does she want a car for - after all she could have a wheelchair innit?

Cannot believe some of you on this thread - thick as fuck and not an ounce of compassion. In fact my DS with his autism has more compassion and care for others in his little finger than some here.

Fact is higher rate mobility DLA allows people to lease (that's right lease not BUY) a car - so what. What is your bloody problem with that.

wolfhound - public transport must be a nightmare for people who use wheelchairs.

I use a Remploy office in London - as the tube is so bad in terms of accessibility they have many candidates who need to make an hour and a half long trip to make a journey which would take 30 mins for someone not in a wheelchair.

Awful, even if they could get a job they'll struggle to get there unless it's very close to home.

ps: Dilly - I'd forgotten about the medical appointments

In the last year I've had;

3 hospital appointments for 1 disability
4 for another
4 Physio appointments for the 2nd

I have a 5th hospital appointment coming up for the 2nd disability, plus two appointments coming up for 2 other types of therapy I'm due to start.

And more trips to my GP than I can shake a stick at. I think maybe 25?

I think many posters' problem is a lack of imagination:

They cannot imagine what it is like to have a fluctuating disability that means you are bedbound for several days and then have to fit in your shopping, doctor's appointments etc. before the next flare-up.

They cannot imagine that you can be bedbound and still need hospital appointments.

They cannot imagine what it is like to have to lift a teenager heavier than yourself into a low carseat.

They cannot imagine that equipment for a disabled person- special car seat, wheelchair etc- actually takes up physical space.

They cannot imagine that disabled people might still have childcare responsibilities etc that mean a car with only room for themselves is no good.

And above all...they cannot imagine that one day it could happen to them.

ooh love the suggestion of taxi's
I hope people realise that not all taxi's can fit a wheelchair, even the ones that do are lacking in head room(dd's wheelchair wouldn't even fit through the door with her and her seating system in it.
buses. oh lovely, even if you are lucky and the bus can take a wheelchair, you would have to fight for the wheelchair space(one on a bus! ) with the buggy users, and other such people who are just ignorant and use it.
trains.....think you have to book in advance for a ramp(which might be ther or not), travel in the guards van so why the hell shouldn't the lady mentioned have a car that she uses sometimes........

I just want to say i really loved sixmonkeys first post.

Its hard for non-disabled people to understand what its like, lets hope they never find out

Also why can a disabled person not have a family? What is so strange that someone might atually love some with a disability and even (shock horror) get married and have children?

What lets of a disabled partner from taking their children to school, or taking their children to vist family or shopping or to doctors appointments?

I'm dishearten in the lack of human kindness on this thread

LittleBlueBoat - me too, it's so upsetting :(

This is for anyone who doesn't have a disability/chronic illness and who wants to get an idea of what it's like to have one. Or for people who do and need a way to explain it to people

Spoon Theory

Examples of these disabilities include;

• Lupus
• Rheumatoid Arthritis
• Fibromyalgia
• ME/CFS
• Ehlers Danlos Syndrome
• MS
• Thyroid disorders

Lots and lots of people who don't look 'sick' or 'disabled' but who live with very debilitating conditions.

I was born with Hypermobility and Dyspraxia, was in 20s before I knew. I always thought it would never happen to me. But it already had, I just thought I was weird although deep down I knew something was wrong. And now I have Fibromyalgia as well.

The Gorilla in the house can happen to anyone at any time and I think people like to bury their heads in the sand and dismiss it until it does happen to them/their child/partner/loved one.

The spoon thing is good. I am not disabled myself, but having two dcs with one of the disabilities on MintyMoo's list means that we all, the whole family, are constantly counting spoons: we only ever have as many as the person with the lowest allowance. If one person (usually dd) uses hers up before the end of the week we're seriously in the shit.

Yes you have to hand over your entire mobility allowance. For my dad this means that he has to buy his own Mobility scooter. His last one cost £2k.

Of course he could forgo the car and use teh mobility allowance for a scooter. but then my mum who also has mobility issues but has not qualified for higher rate mobility componant, only lower rate, would have to run along beside him. He can't go out on his own due to other health issues.
It would mean that he could never go out with the children, no days out, no holidays, no visiting friends and family...never leaving the house.
Of course my mum and siblings could get the bus everywhere, but dads mibility scooter isn't small enough to go on a bus. so what would he do? scoot along behind teh bus?

As for the ridiculous comment about families "sucking it up" god you really are an ignorant twat.

oh and my dad worked as a copy editor at a Newspaper until phase one of his health issues meant that sitting at a desk all day just wasn't viable. He then ran his own rather sucessful Window cleaning business. Right up until he coudl no longer walk.
So he has paid plenty of tax through the years. He also has 5 adult children who work and pay tax.

"Also I agree that they should get a free car but if you need or want something bigger then you should have to pay some towards it also." erm you DO pay towards the "bigger better" cars. you pay a whacking great advance payment. The bigger the car the more the payment. which is fair i guess, except for many families it is not through some style choice but a phsyical necessity that they require these bigger vehicles.

I love the spoon theory - it explains it so well. Hope your DC have a high spoon week this week Cory.

I've had such an awful week in terms of disability awareness, the thread about that lady's horrible BIL, the lack of publicity for the Hardest Hit march last week, the fact that ME/CFS and Fibromyalgia Day last week really didn't seem to raise any awareness at all (can only hope someone, somewhere read my Twitter or Facebook postings and actually cared) and then the general lack of sympathy towards the plight of others on here.

I also know a lady on another forum who is due to return to work soon but knows some of her colleagues have been bitching about her and saying she's not really disabled and has just been skiving for several months. I had the exact same problems 'there's nothing wrong with you, you're just a hypochrondriac/imagining it'

I would try and find me a nice cave somewhere but my internal thermostat is broken and I am permanantly cold so I don't think cave life would suit me.

(((hug))) to MintyMoo

((hug back))

Thanks... off to stuff my face with tea now. Sausage and chips - can't beat it :)

It was me who mentioned the xc90, but i also said i didnt have the finances available to get one. I am not sure why anyone would have to justify what type of car they get through motability especially if they are paying the advance payment themselves.

From my pov though it was the most suitable based on a number of reasons. The height of the xc90 made it a lot easier for ds2 to assist in transferring himself in and out of the car, and even with his car seat inside, there was plenty of room for his legs, and the other kids to be able to sit without being squeezed (he is 10 but needs a car seat to help support his back and sides, as his muscle tone is not good enough to have no support in a car, going round corners etc). The boot of the xc90 was also big enough to fit in his wheelchair and extras like food shopping, without having to stow a seat away, and the way the boot opened meant the lower tailgate became a weightbearing facility which enabled the wheelchair to be stowed with much less stress on my back, as it made it easier to do.

As for my back, it is more than just being sore. I have a hereditary condition called Ehlers-Danlos Syndrome, which among other things, causes hypermobile joints, easy bruising and slow healing. Initially when i was 15, it was just my knees affected by constant dislocation (thankfully no longer after an op but i was left with limited movement in one). Then in my late 20's/early 30's my wrists were affected, i spent 6 months wearing a wrist brace at one point just from opening a plastic tub of ready made fresh pasta sauce. Slowly since i started my family , being pg, carrying toddlers etc, my back has become the main source of my pain. Since ds2 is unable to walk or stand, and is way past the age when babies start walking, i have spent many many years lifting, carrying and transferring him and his wheelchair, obviously both are getting bigger and heavier as well. What i have now is regular daily lower back pain coupled with rotator cuff damage, and regular trapped nerves, in my upper and lower back. In fact i have spent the last week firstly on diazepam, then tramadol, with trapped nerves in my upper and lower back.

Painkillers such as tramadol leave me unable to drive at all as they are so strong, so i either have to grin and bear the pain in the day until all driving duties are done (which is hard to do when you cant even turn your head because of shooting pains), or i have to take the pills and try and find someone to get the school run done for me.

A higher level car such as the xc90 means there is much less trauma on my joints when getting ds in and out, so obviously i am less likely to get another trapped nerve.

The 4x4 type of car would also be better for where i live in the winter, as my village doesnt get gritted and to get ds2 to school there is a short but treacherous route to contend with, so add that to the fact i only have a driving licence for automatics, therefore cant change down gears to negotiate problem areas, it makes sense from that pov as well.

As i said, i didnt get an xc90 as it wasnt financially possible, but after researching many other cars, it was the most suitable, it wasnt chosen on a whim because it looked good but with good reason.

I ended up getting the same type of car as last time, when my old car went back, which is a renault grand scenic. It isnt ideal but it is the best of the bunch with the budget i had available for the advance payment (and i could only afford this one as it was on a special promotion from jan to march this year)

Still at least the new version has traction control which will help in the winter, but whilst i appreciate that there are worse options on the market for me wrt lifting and transferring, i still have daily back pain, some days worse than others, but it is always there. And there are times like yesterday that i feel so defeated and incapacitated by it i end up in floods of tears.

Now i know that the dla is for ds2 and the car is to enable him to be able to get out and about like his non disabled peers, to get to medical appointments, to get to and from school etc, but i am the registered driver and full time carer of him, being a lone parent. So the issues i have with my back have to be taken into account as well, when choosing the right car, because what will he do if i am unable to help him?

I actually think its quite offensive to myself and others in similar situations to infer the reason a motability car would be chosen because of how it looks. And dismissing back issues as being nothing important stupidly naive.

Sorry for the length of this folks, and apologies if some of it doesnt make the clearest sense, my painkillers leave me somewhat spaced out. It took me about 3 times as long as it usually would to type this all out as well :)

Hello Lou - not seen you around these parts in a while.

Good post. It's shame, like Cory said earlier, that some people don't have the imagination to put themselves in the position of a parent of a disabled child or of a disabled person and therefore make justifying your choices unnecessary.

I'm seeing a Rheumy for suspected EDS next week, I have hypermobile joints so we need to find out if it's benign or due to EDS or Marfans etc. Keeping my body straight is so painful, naturally I just flop everywhere.

The pain is unbelievable, sometimes I don't know how I keep smiling when I'm always in pain. I'm just waiting for my meds to kick in at the moment, then the Apprentice to distract me later!

I actually think its quite offensive to myself and others in similar situations to infer the reason a motability car would be chosen because of how it looks. And dismissing back issues as being nothing important stupidly naive

So true. Back pain is horrific, I'd use anything which would help it on a bad day, regardless of what it looked like. If it happened to look good the last thing you want is to be accused of only choosing it for its aesthetic value ffs.

Do the profoundly ignorant on this thread not realise that many disabled adults and children have to travel in their wheelchair or powerchair as they only leave them to go to bed as the wheelchair and powerchair are the only way their bodies are support and comfortable???

And do they not realise that these wheelchairs and powerchairs weigh many stones on their own, without a person sitting in them??

And that the only way to get into a vehicle is for that vehicle to have a ramp?? And that so the person in the heavy chair needs headroom, which means the whole wheelbase needs to be permanently lowered and new floors have to be put in???

And that some drivers need hand controls/foot controls/steering controls added???

And that some disabled drivers need to be able to drive themselves up a ramp into driving position??

And do they realise that very few cabs can take a wheelchair, that very few london underground stations are wheelchair accessible and that buses has very limited spaces for wheelchair users and are quite often filled with large off road buggies so you can't get on??

Where do they propose we get cars that enable all of the above??

Our first motability car cost me 10k in total over the 3 year period, gave it back at the end of the lease and the next one cost me around 16k as we needed more adaptions and a bigger car for more equipment and it needed to fit a family of 5. The one I have now is smaller and will cost me around 10k, still have the equipment but family are older and have their own cars now. When the lease on this one is up, my child will hopefully be driving herself and have her own motability car - I will have fuck all!!! Nothing to sell on or use as a deposit. 10 years, around 40k and nothing to show for it - other than the knowledge that my child with a disability has been comfortable and safe during transportation

The profoundly ignorant should perhaps think a little harder about what life would be like if your child couldn't walk or your husband didn't have legs or full use of legs or your mother lived with permanent pain or your brother had a learning age of 3 or your aunty was blind...think about it and then come back and tell us how fantastic our free car and our free money and our easy parking is

Not to mention the cost of the powerchair/scooter, scaredoflove, since the DLA only funds either a wheelchair or a car. DH has one for indoors and one for outdoors and the mobility guy says he doesn't think the outdoor one will survive another winter. Sigh. Bit rich given DH (once again) basically couldn't leave the house for three months because of the ruddy snow.

My friend's mum had ms. At first she had a little adapted car but when she got too weak to drive that she had to give it up because her husband couldn't drive. That was more or less it for her as far as going out was concerned because it was almost impossible to get a taxi when she wanted one. For some reason (at least in this area) you cannot book a wheelchair accessible taxi in advance and it's hard to plan a trip out if you don't know until the last minute if transport will be available. I have enough trouble getting ds's SN buggy on a bus round here, I dread to think what it would be like with a wheelchair so that's hardly an option. It's stressful enough going to a hospital appointment without having to wonder if you will even get there on the day! If this is the situation in a major city then I dread to think what it is like in other areas, so of course people need cars.

Btw, at first my friend would try and take her in her own car (in case people are wondering!), but it was just too difficult using an unsuitable car as she couldn't get her mum in and out, she was afraid of dropping her and it was very painful for her mum, plus she herself had broken her back a few years before and really shouldn't have been lifting anyway. This illustrates why people need extra help to get a vehicle that they can actually use and can't just use any old thing.

Plus they need something reliable and well-maintained which doesn't come cheap. How on earth would a disabled person manage if they had an old banger that broke down? I don't see many wheelchair-friendly tow trucks.

scaredoflove brilliant post , I hope the ignorant manage to read it and the interested people read it .

hi saggar, i am still about, but i rarely post now, if i do it is in lone parents, about food or about dogs

scaredoflove, i wish i had a like button for your post.

my children are 19, 14, 12 and 10, it is my youngest who is in receipt of dla, and my oldest will be off to uni in september if she gets the grades, so like you they are all growing up, which means next time the car is up for renewal, we may well be able to find a suitable 5 seater car with the right specs

like you though, it wont be long before ds2 will be old enough to drive for himself (you can drive at 16 if in receipt of dla/motability i believe), though he will need hand controls and either drive from his wheelchair, or have a stowing adaptation included for it

like you, when that time comes i will have spent thousands and be left with nothing, but the knowledge that it was worth it for ds2's sake, as without motability he would have been severely restricted in his day to day life

my village has one bus an hour on weekdays, the last one at 6pm, less on saturdays, none on sundays, and the buses used on the route are not disabled friendly, to use one that is, would meaning driving to the park and ride just outside the closest major town, and getting a bus from there

i only passed my driving test in summer 06, once i had separated from my h, so had to learn to drive asap or else we were pretty much housebound, as it was a nightmare trying to use the bus the couple of times i tried it, and also v expensive, iirc return tickets to the local town just 3 miles away for 5 of us was well over £20!

those buses that were not adapted for disabled users were incredibly hard to get on and off, and more often than not the driver would be on the move immediately, giving no time for me to get ds safely settled. i am sure it was nothing more than the fact that allowing more time for us genuinely didnt cross their mind as it wasnt something they were used to dealing with (mind you even the buses with disabled access arent so great once on board for child sized wheelchairs, because they have a narrower wheelbase, and therefore not so stable when going round corners, for example, i used to brace his wheelchair with my arms and legs to stop him tipping over)

taxi services locally are v different from those in a big town or city, they are all mini cabs that you have to book in advance, and iirc in the almost 9 yrs i have lived here i have seen only one private hire car wheelchair accessible. so the only other option taxi wise would be to book a non adapted one and try to find one that would fit his wheelchair in the boot, but that would also then mean that i would have to take a car seat for him, as he does not have enough muscle tone to keep himself upright.

this is why i had to learn to drive asap, but was unable to do so before as i have been epileptic since i was 6 m old, so had to be seizure free for a year before i could get a provisional licence (been seizure free since nov 04 now though still have to renew my licence every 3 years to prove i havent had one)

and the reason i only have an auto licence to drive is because that was the quickest way to get on the road, as well as my sister and her h v kindly let me have one of their cars which was an auto, which they owned and insured and taxed, but i was a named driver and i paid for servicing and anything that went wrong

i got a motability car in the end because i wanted to be less reliant on them, and to show them i could be more independent , as they have been v good to me in the past, helping in ways they shouldnt have had to, even while i was still with my exh, as he did bugger all to support us and was happy to let them do so. it was uncomfortable for me to be in that situation, so by getting the motability car i felt i was more in charge of our lives

maybe there are some who will say that it was my choice to have the amount of children i did, which is right, but i didnt choose one of them to be disabled, and he deserves the right to have a life as much on a par with his peers as he can, so i really really just cannot grasp why anyone would begrudge someone being able to have that opportunity.

and the only way to enable this is by having a car that includes and is suitable for him and us as a family. surely if we went by the rule of only the person receiving dla being allowed to use the car would once again restrict the lifestyle of that person, as it would be isolating for them rather than inclusion

and of course if that idea was stuck to rigidly it would mean that no disabled children would be out and about enjoying life, growing up ready to contribute to society, making past present and future generations more understanding, tolerant and less "scared" of someone with a disability

isnt that harking back to the old days when disabled people were basically hidden away, stuck at home, not sent to mainstream schools, not spoken about, the elephant in the corner?

why shouldnt disabled people get some extra help to have a life ffs,how can anyone begrudge the extra financial help needed to do that? and why is it so important how much may be independently paid for an advance payment? to me that insinuates a two tiered system, those who are disabled and those who are not, and those who are should not be "allowed" to have a reliable new car (which is v v important in case of breakdowns) that they can be sure will be properly maintained.

if i didnt have a motability car i doubt i could afford a car at all tbh, insurance, servicing, replacing tyres, feeling secure that it wont break down (the idea of being on the hard shoulder of a motorway with ds in his wheelchair is a scary thought)

however if ds2 didnt have cerebral palsy leaving him unable to walk or stand, then having no car would be a pita, but manageable.

another long post sorry, but it infuriates me when i hear some of the stuff people come out with wrt how well disabled people do out of the government and how unfair it is

i wouldnt wish anyone to end up permanently disabled but it would definitely do some good if people could live that life for a bit and then see if they feel the same afterwards

pixel, i just read your comment about tow trucks, and asked my bf about it , as he is a roadside/recovery mechanic (like the aa/rac but for another company), and he says that you are correct, there are no recovery vehicles that are wheelchair friendly

so i asked him what would happen if a car with a wheelchair user in it, broke down on the motorway, as they wouldnt be able to clamber up the bank out of harms way until a recovery vehicle arrived

he said they would be given priority by the highways agency, but even so, they would be at risk whilst they waited either in or by the car

sucks really

It's great isn't it - life with a disabled family - everyone wants what we have?!

I'm so angry reading this thread - where are the people who marched on the streets about having to pay more for further education? Or complaining what some pumped up politician thinks about rape? Or the people who argue about back garden dog breeders? all those posts spouting their disgust - where are they when it comes to disabled issues?

Where disabled adults and children are only allowed 3/4 nappies a day?
Where disabled adults and children have to fight for an education full stop?
Where disabled adults and children have to live in houses where the disabled person can't access the bathroom or a bedroom as they are too big to carry upstairs?
Where disabled services for children stop when they hit 18?
Where disabled benefits are being cut due to a teeny amount of false claims?
Where if a disabled child has to go into hospital long term, their benefits are removed but the parents are still doing ALL of their care?
Where mobility benefits are being removed for those in long term care?
Where disability aids are rationed and only the bare minimum/basic aids are being supplied?
Where newly disabled soldiers are not getting prosethtic limbs which will enable them to walk and recover?
Where respite centres are being closed or reduced?
Where home to school transport is being removed or reduced?

Where are the indignant for all the above? The only people shouting are the people living it, the rest of the country just don't want to see it

Free cars seem to be the only thing we have left but they will be gone if DLA goes

But the parents and relatives will carry on caring, carry on living and carry on doing the best that they can do - until they drop dead from old age and exhaustion and the profoundly ignorant will carry on being ignorant