Rights of people with disabilities and carers.

:(

www.mumsnet.com/Talk/in_the_news/1484476-Closer-magazines-benefit-bashing-story-features-a-carer

Its not just the newspapers either. A couple of the womens weeklies have adopted quite a nasty little right wing agenda of late. The two that spring to mind are Closer Magazine and Woman magazine. ( i do NOT buy these but i did see the stories featured on the covers.
The latest story was about the Sharp family. The female in the family is working 40 hrs a week for free in a charity shop. Instead of questioning who the "charity" is that is taking advantage of the situation, Woman readers are bleating like sheep over the fact that there are benefits being claimed. Most of the readers of these magazines cant seem to think for themselves. Ive even seen nasty comments like "she should have kept her legs closed" and these kind of comments are being posted by the female readers of rags like these.

And my next point!

So much discrimination towards being a Mother and disabled... Especially from the social care that is the thing that is supposed to help us.

In my experience, & from what I've read on the disabled parents network, council policy results in disabled parents children being classed as 'at risk of neglect' SOLELY because of the parents disability/ physical limitations.

Now this is absolutely unacceptable, as well as being against government legislation itself. I was almost forced into this position as a 'deal' to enable me access more care hours funding (!!!) & fought v hard for them to give me the care I needed without compromising my child's safety & my right to be a parent. It delayed getting me help for months, & compromised my health substantially, & if I hadn't had a v informed strong minded legal friend helping me, I don't know what would have happened.

If anyone is interested in helping change this, I'd love to ensure no mother ever has to go through this again (but it's hard, as am still disabled & struggling, but I'd have a go). I wonder if this particular battle is a good one to take on, as it's about policy & process rather than attitudes in society at large (which as so many people have said on here, cannot be changed). Or maybe it's still too much to expect :(

I use the care bit of the dla for respite for me which is someone to look after ds so I can lurch from one day to the next... But translated into tabloid speak 'mum spends OUR money on babysitters so she can enjoy the high life (= continue to be bed bound)'

I can't afford to use the mobility bit on a notability car (which would change my life), as my (& my sons life) isn't subsisting unless I use all avail money for care/ help w ds. It sucks.

Everything can be twisted to make us sound like thieving scum, & I find the media/ culture of this so harmful to me that I stopped reading newspapers, avoid most people ... Which results in me being isolated from society, which sadly is what most people want :(

We have a right to live... But only 'out' of sight.

leith I will be honest - life is so difficult and unrelenting, that I have in the past ( not now because I have to use DLA to cover my mortgage ) used it to take the 4 of us away on a "respite" break.

The DC and DH have a difficult time due to my illness so they need respite and a break from the difficulties it poses.

Imagine if the Daily Mail got hold of that?!
"DLA Woman Holidays With Her Family..."

I mean how very dare I try and experience happiness, comfort and try to break the cycle of pain, sleeplessness and sadness.

Serial: I agree the Denning quote sounds and is sexist, but do not forget that this was over twinty years ago, and at a very early stage of DLA law. Both precedent and subsequent european court decisions have time and again taken the view that the help that someone needs is NOT limited to what family members of any gender can provide.

I also think it worthwhile saying although Nanny has already pointed out that DLA is a sum of money to be used by the disabled person for what ever they want. A number of people I know use it for paying bills or unexpected large expenses, or ongoing non nhs medicle costs like reflexology. The tests are around care and mobility so it does make some sense that people with disabilities would use the mobility part to pay for taxis, or a train card. Or to pay the fare of someone to act as a company whilst they go about their tasks using public transport. But as Nanny says and what I suspect realy pisses this government off is that the money is without strings once approved, and us feckless crips can smoke and drink whilst watching our 3 mile high by 3 mile wide plasma tv,s at tax payers expense.

serial it may not be intended for those reasons - but in truth there is nothing to stop the recipient spending it on food.

Unlike a personal budget from Social Services - with DLA they don't ask you to show proof of what you have spent the money on.
There would be no repercussions for DLA recipients if it was found out that it was being spent on food.

double thankyou so much for your message.
Iv pm"d you. X

OK. Disability Living Allowance is help towards paying someone to do stuff for you that you can no longer do for yourself.

Bizarrely, it's not intended to cover being able to buy or prepare food, which would appear to be a basic care need.

Why? Well it turns out that in 1981 Lord Denning stated that a disabled person did not need special help to do these things - because his wife or daughter would be doing them for him anyway.

"Bodily functions include breathing, hearing, seeing, eating, drinking , walking, sitting, sleeping, getting in or out of bed, dressing, undressing, eliminating waste products - and the like - all of which an ordinary person - who is not suffering from any disability - does for himself. But they do not include cooking, shopping or any of the other things which a wife or daughter does as part of her domestic duties; or generally which one of the household normally does for the rest of the family...... ordinary domestic duties such as shopping, cooking meals, making tea or coffee, laying the table or the tray, carrying it into the room, making the bed or filling the hot water bottle, do not qualify as 'attention .... in connection with (the) bodily functions' of the disabled person. But those duties that are out of the ordinary - doing for the disabled person what a normal person would do for himself - such as cutting up food, lifting the cup to the mouth, helping to dress and undress or at the toilet - all do qualify as 'attention ... in connection with (the) bodily functions' of the disabled person."
? Parker's case, 1981, Lord Denning

for society to accommodate disabled mothers we'll need adifferent society

disabledparentsnetwork.org.uk/

they might be helpful

Oops nanny, cross posted & dont want to seem like an arguing.

I too have thought about topping myself, but couldn't leave my toddler like that. I have down & slighterly less down days, & it's basically just bloody awful going through this.

Have you had any help from the council? I fought a huge battle with them & they have been amazing (after 5 mths of relentless meetings, complaints, researching, explaining their obligations to me eyc etc etc). I became v v ill in the process, but got substantial carer hours. Id be happy to give u advice if it wud help - pm me?

Also looked into employment law ALOT as work was trying to edge me out too, so do let me know if I can help.

nailak I don't think you're going to get positive answers on this thread.

Bluntly (though nicely!) I'm sure sure start centres could make their services more inclusive / accessible for disabled parents...

However sure start centres cannot offer the solutions to the bigger and highly critical needs of being a disabled mother. So seem a little irrelevant in this desperate context.

Until these basic needs & some of the relentless discrimination have been voiced, campaigned, legislated and provided... I'm a little preoccupied with survival (money, carers, health, work, transport, equipment, somewhere to live, and ds in everything )

I think I would benefit from a RL disabled mothers group.
I have also had fleeting thoughts of suicide about my situation , but I know that's not an option .

But his work won't really accept him as a carer.
When he needs to take days off to look after me , he has to take annual leave
He doesn't get much as it is.
Then for things like the school holidays, Christmas etc, he has to work through them which puts a lot of stress on us all.

My ESA will stop in a few months and we are already struggling to pay the mortgage.

I really don't know where I'm going any more.
I don't know where to turn.
I'm already on antidepressants - there is no scope to increase them.
I think I may ask for counselling to help me deal with all of feelings surrounding the impact of the illness on my life, and the amount of discrimination I have faced from my employers.

I've never found that sentiment anywhere, lurking.
People's responses seem far more closely linked to the acceptability/loveability or severity of the impairment rather than the sex of the child.
How odd is it? How noisy or messy or scary?
That tends to change as our children hit teenager and puberty.
Then the boys becoming men are more frequently seen as a problem or a danger, and the girls are seen as pitiful or vulnerable. In both situations, the support and tolerance plummets from the general public.

A thought I've been struggling with since the sex workers thread but there hasn't really been a place to put it..

When society is at our abysmal 'best' with disabled boys, we're taught they're cute and harmless and you're a bitch if he pinches your bum and you don't laugh etc.

With disabled girls we're taught to feel sickeningly sorry for them and the burden () they place on their parents.

I know this is just another form of sexism, but why is this? I mean essentially a boy with Downs is as throwaway to society as a girl...So I'm aghast. It can't honestly just be 'well we like boys more. NERRRRRR' sure?

My DH is brilliant.

He does what he can and more to help me

To be absolutely honest, support groups are just papering over the problem.

The real issue that caring is seen as women's work, and women's work is not seen as economically valuable (or even culturally valuable).

What needs to happen is that men take their share of caring for family members with disability, and childcare, in equal measure to women, releasing women from the burden.

I'm willing to net that it isn't even a discussion who will give up work to care. The assumption is it is the woman's job.

Raising carer's allowance from the pittance it stands at would at least send some signal that this is economically appreciated by society.

Yes, a support group might help individuals get through their day, but it would do nothing to solve any of the problems.

Just marking my place on this thread, to remind me tell you about Lord Denning and DLA.

Thankyou for starting this thread x

I am a registered disabled mum of 2 , DD6yrs and DS4yrs I have a chronic illness.

Am struggling so much.

I am a qualified professional in the public sector - currently not working because my employer won't give me the reasonable adjustments advised by occupational health[sad.

I want to work.
I need to work.

Financially we are really suffering and struggling to pay the bills.
Even though I am in receipt of the benefits that I am entitled to.

I am really flat in mood and have steadily been losing my confidence since I have not been working.

I trained really hard for my job and feel like I have lost my career and my financial independence through being discriminated against.

I never thought this would happen to me.

I am only in my 30's ,and feel so disappointed because now both my DC will be at school from September - I always saw myself at that point as regaining my sense of self, and progressing in my career.

But there is no job for me . due to cut backs they say - but I'm an easy target for an organisation that wants to save money.

Its always been so much a part of me (caring role ) I have been so dedicated to my job and i miss it terribly .

I have completely lost my purpose

so what can childrens centres do to increase the accessibility of their provision to disabled mothers?

I think people are going down slightly the wrong track, all playgroups, childcare, social centres should have provision for children with sn. Otherwise segragation takes place, and debates like the bus related threads we just had will persist becouse other parents will not have any knowledge of the extra difficulties caused.

On a diffrent note I would also argue that the focus on carrers is somewhat at odds with the thread title as, although careers and disabled people have many similarities in the way society ognores their needs. Essentialy disabled children and adults have their own battles and causes some of which are in direct conflict to the careers.