A Life Worth Living

Baroness Thomas

A couple of weeks ago I saw the most remarkable film at an All Party Group for young disabled people in Portcullis House.   It was called “A Life Worth Living” made by Dr.Jon Hastie, who has Duchenne muscular dystrophy and needs 24 hour care.  He and his carer  travelled the length and breadth of Britain last year , visiting other young men with the disease and having frank discussions with them about all aspects of their lives.   Nothing was off limits – they talked about sex, relationships,  independent living, the need for privacy, how they coped with life – and the prospect of early death.   At one point in the film, the action was speeded up and showed Jon being turned through the night ,altogether about six times.  It also showed how Jon’s carer got him up.  Jon, who is 31, ended up in the Netherlands talking to two brothers with the disease – one who ran pop concerts.  His brother was 48 – the oldest person many of us had ever heard of with Duchenne.  The saddest part of the  film was when Jon talked to the distraught father of a newly-diagnosed young boy of 3 or 4.

At present the film is being shown at international film festivals and maybe shown here later on, possibly on Channel Four.

The really encouraging news is that research is under way into Duchenne called exon skipping which is yielding promising results.

In the meantime, we must not go backwards as a country in enabling people like Jon Hastie to lead independent lives.

21 comments for “A Life Worth Living

  1. Lord Blagger
    24/07/2012 at 4:22 pm

    Quite right. However, its inevitable.

    It’s down to the fraud at the heart of government. Namely its debts. With a real debt of 7,000 bn, 6,000 bn hidden off the accounts, that doesn’t leave any left for helping people like this who need help.

    So who are you going to pick? These people, or the elderly? Who gets their payouts axed?

    After all, you didn’t do anything about the fraud and running up the debts.

    • maude elwes
      25/07/2012 at 8:55 am

      @LB:

      As a footnote to my earlier post. Here is the reason we are in the mess we are in. Corporations, bankers and their colluding politicians.

      Read all about it.

      http://www.guardian.co.uk/business/2012/jul/21/global-elite-tax-offshore-economy

      • Lord Blagger
        25/07/2012 at 10:20 am

        The problem is one of scale. That’s the bit I don’t think you realise.

        Take the ‘payments in cash’ issue. Apparently, the top end of the HMRC figures are 2 billion a year.

        Contrast that with the deficit (ignoring the real debts) of 150 bn a year. It’s an irrelevance.

        Next look at the bank bail out. Most of the costs were down to government errors. Namely selling insurance after the event and share trading. There hasn’t been any significance compensation paid by the government at all. That’s come from other banks.

        Losses 70 bn. Cause – Gordon Brown.

        So what about government fraud? namely taking money from people for their pensions and spending it, not investing it, and hiding the liabilities off the books? 6,000 bn. 7,000 bn total debts. 100 times larger than the government losses on banks.

        What you need to realise is that you are being conned. You are being told, by the tax dodging Guardian, that its down to the evil bankers etc. The reason is that they know if the true state of affairs comes out their readership (public sector workers) are shafted. Same with politicians. Rather than admit their fraud, lets blame the bankers.

        Or in other times, the blacks, the Jews, …

        • maude elwes
          26/07/2012 at 10:09 am

          LB: Are you palying with a full deck?

          We know government colluding n and understood what was taking place and what the result of the fall out would be. Blaie being the biggest move and shaker in this little charade. And , guess what, they have brought him back for a second round. So, expect to see and feel the kind of duplicity we can barely imagine.

          However, I repeat, you still seem unaware of being able to graspt the core of this financial disaster and you certainly are very reluctant indeed to hold those to blame responsible for their overwhelming greed.

          Here again is what happened. And the money they made is hoarded in the offshore havens they love. Which should be grabbed by the people though government to pay back what they plundered.

          http://www.youtube.com/watch?v=lXfnHM9QBjk

          These people created the horror that faces people like this doctor who will have a financial crisis of their own.

          • Lord Blagger
            26/07/2012 at 1:28 pm

            Far from it. I’ve a complete deck.

            However, I repeat, you still seem unaware of being able to graspt the core of this financial disaster and you certainly are very reluctant indeed to hold those to blame responsible for their overwhelming greed.

            1. I’m quite aware of the disaster – more so I think than you.

            The reason is down to you second comment on who you think are the main villains.

            You can’t tell who the main villains are, unless you put the numbers out there for the scale of the problems.

            So here are the problems that I see, in no particular order.

            1. Government losses on share trading in banking shares

            2. Government losses on banking insurance contracts.

            3. Customer losses on banking failures

            4. Government debts.

            5. Civil service pensions debts

            6. State pension debts

            7. State second pension debts

            8. PFI

            9. Nuclear decommissioning

            10. Company pension black holes

            11. Expected losses on guarantees for ex state company pension schemes

            12. Private pension savings.

            13. The deficit.

            There’s a reasonable set of the major issues in the UK.

            a) What’s the size of each problem?

            b) What are the side effects of each problem?

            c) Who took the decisions leading to the problems?

            d) Who suffers the losses from each problem?

            What else would you add?

        • Gareth Howell
          31/07/2012 at 12:10 pm

          Losses 70 bn. Cause – Gordon Brown

          The Prime minister Gordon Brown stopped outside my humble abode here in the wat country about 3 months before he was ousted from power. (I may have reported this before
          on LOtB but I don’t think it saw the light of day)

          I had made a certain deduction about an R3 report that the PM was on his way to his country home in the West country, which was reported at 0830 in the morning and decided that he would be coming past here at about 1145.

          I was right as the flashing lights of the offical car went past the first time. i can see them acros the valley.

          The second time the media staement was rather different and I became aware that I was to stand outside and wait for him to pass! Blutty silly idea but I did too for a few moments at about 1145, and sure enough the official car with the white gloved hand of the chauffeur waving to me out of the driver window.

          Th end of our conversation ,as the Prime Minister leaned out of the car, was that I was the village idiot standing at the side of the road waving at passing cars!

          He said “We won’t be coming this way again!”
          at which I was somewhat relieved and took to mean that he did not think he would get re-elected in the general election of the May that year. He has not and was not!

          My reply was to the effect that it would make two of us to be village idiots in a few months time. Him a global one, which proved to be the case.(He had a job to do)

          On my more local status, the jury is out and will remain out permanently, being discharged, and no retrial being considered.

          In a more light hearted vein, the ease with which Gordon Brown ran the Treasury for 10 years and the First Lordship of the Treasury for another three, took some beating, and was merely co-incidental with the uptun in the world economy of 1996/97. Claiming the credit for it took more… beating.

          Some people are lucky and some work for their luck. Gordon Brown’s dedication to hard intellectual work has never been in doubt.

          In view of his dedication to local politics in this village and to world economies,in general, I now always addres my deliveries to
          “Brettonwoods Corner”.

          All that is really needed is the postcode on any letter these days, but in view of his intellect, he may need to claim the importance of the whole address, when delivering my post.

    • Baroness Thomas
      Baroness Thomas
      25/07/2012 at 5:13 pm

      @Lord Blagger – It’s not a question of ‘choosing’ between the severely disabled and the elderly. Both can be helped – it’s a question of how, and how much.
      @maude elwes and @Sharon – Of course not every sick person is expected to work. The outsourced company undertaking the Work Capability Assessment preceded this government. The Harrington reforms mean the WCA is fairer than it was, and there is still an appeal process.

      • Lord Blagger
        25/07/2012 at 7:27 pm

        Unfortunately it is. That’s the problem. There is no money. There is just a massive debt.

        If you don’t believe me, tell me this.

        What’s the present value of the civil service pension liabilities, and is that included in the official debt figures of 1,1000 bn?

        That’s just for starters.

        With the debt situation, there is no choice.

        However, my prediction, you won’t quote figures for off the book debts. That would show the extent of the problem. Far better to keep quite, mouth the platitudes, carry on taking expenses, what the heck if people like this person need money.

        • Baroness Thomas
          Baroness Thomas
          26/07/2012 at 8:51 pm

          @Lord Blagger – You’re certainly right that the aggregate public sector net liability for pensions runs into billions, is unfunded, and is an off the balance sheet debt. In future, the Government say that most workers will have to work longer and pay more. No-one’s “keeping quiet” about it.

          • Lord Blagger
            26/07/2012 at 10:12 pm

            Billions? Think again, you are out by a factor of 1,000.

            It’s in the trillions.

            As for people keeping quite, they are blatantly lying though their back teeth.

            For example, the Treasury, now you would have thought they had some rough estimates. Nope, just two emails, on how to deny that it is a debt.

            As for you, I notice you haven’t come up with any figures. Isn’t that keeping quite about the scale of the problem. It sure is.

            ie. You’re taking the general strategy.

            1. Deny, deny deny.
            2. Never mention any figures.
            3. Offer some platitude, it can all be solved if we have growth.
            4. We can steal the money of the ‘workers’.

            So come on, if you aren’t keeping quite, tell us the figures.

            Start with the state pension. What is the present value of accrued liabilities?

            [Hint, its about 2.4 trillion (not billion)]

          • Lord Blagger
            26/07/2012 at 10:19 pm

            The second problem, that you can screw over workers.

            Massive assumptions in there.

            Q. Do the ‘workers’ earn enough to pay the debts?

            Answer – no. The real level of accrued debts is 7,000 bn. Government taxes are 570 bn. 12-13 times geared. Those debts a primarily linked to inflation. So printing money just won’t work. It causes inflation, and the debts get bigger, in proportion.

            The next bit, why should those workers just work to pay off debts and receive no services? Don’t you think they might want the NHS, schools, roads etc, for their money? Ah yes, you think you can milk them and they will stand their like cows. Greece shows that doesn’t work. They just stop paying taxes.

            So has it tipped? Yes.

            Last year, 150 bn in deficit spending, plus 350 in increases in the level of debts (not borrowing). Total 500 bn increase, compared to taxes in that year of 550 bn.

            So you have no choice but to default and not pay out.

            That’s what comes of financial fraud, by hiding the debts off the books.

            So if you dispute, 7,000 bn, you have a simple option.

            List the debts, their present values, and where the heck the government publishes them. Good luck in trying, because the information is hidden. Contrary to your claim that its out there.

            If you can’t find the information and tell us, what does that tell us about your claims. Either its deliberate deceit, or you’re making statements without foundation. I’m not sure which is worse.

          • Baroness Thomas
            Baroness Thomas
            27/07/2012 at 12:49 pm

            @Lord Blagger. Even Robert Peston only says “About £1 trillion” . But getting back to the original blog, what is your main point in commenting on Dr Jon Hastie’s film?

  2. Gareth Howell
    24/07/2012 at 4:29 pm

    I sat with a severely disabled young woman, and her carer, on the SW Train to Southampton, and she had just started a Fashion design course at the University. She was one of the most beautiful women I have had the fortune to sit next to.

    I hope she did well at her hons degree course, which is by now done!

    There is one less severely disabled woman in this area, and I would not normally comment on looks or behaviour, especially of one who is married, proud mother of two delightful and unchallenged children, and is really exceptionally good looking, with excellent manners, and is really very sexy indeed!
    I give her my complements when I meet her.
    She knows what I think!

    It is all about knowing how to live with handicap, and they know!!

  3. MilesJSD
    25/07/2012 at 1:16 am

    One good thing I learned
    at a 193Ts badly co-educational County ‘Grammar’ (Secondary) School in England was
    “Ben Johnson replied to the question
    ‘Is life worth living’,
    ‘That all depends upon the liver’ “.

    Well, Parliament is supposed to be the Brain ensuring that Britain has amongst other vital organs, a healthy ‘liver’.
    ———-
    Now we know,
    but our Governors and educators do not
    or fail to publicly acknowledge,
    that
    ‘Life depends upon one’s lifesupports, as much as upon how one and one’s rulers deploy those lifesupports’.

    Enablements are a further core essential needing increase.

    But the whole lifestyle-package
    needs to be necessary, sufficient, and both Earthwise and Civilisation-wise sustainworthy*
    (i.e. longest-possible-term affordable and both Human & Earth-lifesupports sustainable, Lord Blagger please note and assimilate).
    ————
    Even many welfare-recipients are actually being-given** more than one human-living (‘income’ if you’re a Blaggerist).

    There is a big problem with the tens of millions of British People who are drawing/being-given from the Common Purse, more, and often hugely more, than one human living
    but who in both Natural and Sustainworthy-Civilisational Fact do not ‘need’ so many human-livings
    (and we are talking not just the RBS, Barclays, Football-Stars, Upper Civil Service, and Parliamentarians’ over-payments;
    but the £billions of overpayments to the millions of middle-, and upper-lower-, classes
    also so far not realised and not called into question;

    even ‘though it must be evident that the Earth itself can not afford to be having so many Lifesupports wantonly destroyed and literally wasted).
    ——-
    * for Lord Blagger all this ‘lifesupportiveness’ and ‘sustainworthiness’ boils down to ‘income’ and
    ‘who pays for that income, you or someone else’ ?)

    • Gareth Howell
      31/07/2012 at 8:08 pm

      Well, Parliament is supposed to be the Brain ensuring that Britain has amongst other vital organs, a healthy ‘liver

      Fortunately the analogy of the “body Politic” does not extend that far, although I sometimes wonder whether surgeons get confused when they are doing transplant surgery, imagining they are politicians.

      Ah! For Haematology and a blood count!

  4. maude elwes
    25/07/2012 at 7:25 am

    @Baroness Thomas:

    Dr Hastie is a brave and determined man to expose himself this way in order to bring acknowledgement to people in this very difficult situation. How I admire his tenacity.

    However, what is it we, the public, can do to impress on a government only interested in the wealth and purchasing power of the 1% at the top of the human pie? Which does not include the sick, disabled and elderly in its deliberations as a priority. From their point of view, there is no kudos in that.

    Should we tell them ‘again’ not to allow tax breaks to those who have the kind of greed you only read of in fairy tales? The only answer you are likely to get there is, give these sick a job, find out what it is they can do and force them to sign on for work, that will make their life worth living. Instill in them, every one, the fear that unless they can ‘pull their weight’ they are utterly worthless and should line up for euthanasia at those thriving hosital clinics of death. One on every corner, akin to the abortion clinics, for that is what they are. Clinics of death.

    What you seem to be missing is, that once Christian concept of life having meaning has been dropped from our civilisation in order to align oursleves with more understanding of third world mentality. Survival of the fit and b—-r the rest of them.

    Hammering members of parliament with endless letters doesn’t raise an eyebrow, excpet in how to reduce the amount of stationary coming in. The only effort that moves those thick giggling idiots is the threat of the next election and being outed quick sharp. However, the public gain only short lived satisfaction from that, as another tranche of the same ilk takes his/her place in no time, and very quickly learns to follow the leader or else.

    If you have a solution to this dilemma, then let us all know about it, post-haste.

    And if you doubt my analysis, look at Blaggers post, as he has written in the same vein as the IDS brigade we have to endure, without respite, for ions. And his ilk, once pushed from his seat, will be to take up an appointment in the Lords. That fact is endless in this democracy.

  5. Nazma FOURRE
    25/07/2012 at 11:27 am

    Dear Baronness Thomas
    I wish to thank you for arising such a debate especially in this cold world where handicaped people are regarded as “strange creatures” by some cruel people .
    I shall tend to think that there is a need for more medic0-psychological homes for these handicaped people before they could gain their autonomy.
    Each human being needs care, love , affection and warmth and these less fortunate people should not be neglected and I trust you that they would be properly be handled with a “motherly care”.
    I am sure Lord Blagger would understand that debts of any country are usual and they don’t affect the social welfare of the needy, rest assured that a budget has already been voted for them.
    God save the Queen and the Lords. God bless the United Kingdom.
    Nazma FOURRE

  6. Sharon
    25/07/2012 at 1:12 pm

    There are people just as disabled as the chap you mention but are being denied their benefits because of the farce that is the work capability assessment. If Cameron and Co have their way, these people even when winning the right to disability benefits, will be re-assessed way to often for them to live life comfortably and worry free as well as all the hardship in their lives.

    There are also the people who’s disabilities are not so visible who are being denied a good quality of life, who live in fear of brown envelopes, stress of phone calls from assessors and benefits being dropped without adequate prior warning because of the way the welfare system is working right now. With private companies being brought in all over the place, this problem can only get worse.

    The most worrying thing is the rumors that they want to change the tribunal system so that it doesn’t go through the job center at all and there would be no payments in between. So many people like this disabled person you mention are going to fall through the net if the future welfare plans go ahead. They’re already falling through the system now, with people setting themselves on fire in protest, suicides because of loss of benefits etc and a company at the top of it all who are failing the most vulnerable people in our society.

    There is only one thing I am thankful for. The fact that the current government have upset nearly every single group in our society, except the top one percent of course and won’t last. Thank goodness.

  7. Lord Blagger
    27/07/2012 at 1:38 pm

    @Lord Blagger. Even Robert Peston only says “About £1 trillion” .

    ============

    When will it sink in. 1.1 trillion is the figure for BORROWING. It doesn’t include any of the pension liabilities. They come to 6 trillion ON TOP.

    THE PENSIONS DEBTS ARE NOT REPORTED. WHEN WILL IT SINK IN?

    ie. It’s a fraud. The major debts are excluded, contrary to your claims that they are available. Still having trouble coming up with figures for the debts? You’ve told us they are available.

    To retiterate the point. You won’t find the figures for the state pension as an example, because its hidden.

    =========
    But getting back to the original blog, what is your main point in commenting on Dr Jon Hastie’s film?
    =========

    The main point is that people like you are condemning people like Jon Hastie to a s****y life because of the fraud in government over debt.

    You can’t provide the figures to show the extent of the debt. Well let me tell you that its 7 trillion on an income of 0.57 trillion. 13 times geared. You couldn’t get a mortgage on that multiple. Now that means that the government can’t service those debts. It’s bust. Bust governments can’t pay for the likes of Jon Hastie. Look at Greece for a hint of what is coming.

    I say hint, because Greece currently has a fairy godfather, Germany, sending it lots of cash. Whose going to do that in the UK? No one. So it will be worse.

    By your ignorance (because I think that’s the case in your instance), you are going to put people like this in an awful situation.

    • maude elwes
      27/07/2012 at 8:36 pm

      Why is it, LB, you simply refuse to accept that the con men who stole our money must be forced to repay what they took. And that the government has a duty to continue to use borrowed money no matter how big it gets, as it is all worthless anyway.

      Somehow, you appear to have a blockage. Those who stole, must repay and spend thirty years incarcerated for what they did.

      Austerity is the name of ‘their’ game. Not the innocent people who were betrayed by their governments for thrity or more years.

      Nationalise the country is the answer. That will get everyone working ond off the benefits you so dearly hate. Then, the sick, elderly and disabled will be able to thrive with the vast profits made from the nationalised industries. Won’t they?

      We were robbed similar to Russian oil company money. Those oligarchs who came here and put all the Russian peoples money in their off shore havens left that country bankrupt, didn’t they? Now why did they get away with that I wonder?

      Just the way those who stole our expenses money did here. Either a cover up or a reprieve, because they are all in it together. That’s why.

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