Of Tatty Teddy Bears and Martyrs.

Not long after my son’s autism diagnosis, I found myself attending a meeting in a WINZ office (that’s the benefits arm of the Government, for the non-New Zealanders). I had the paper-work from my son’s Developmental Pediatrician, confirming that I as his parent met the requirements to receive an ongoing disability payment that was meant to help me afford all those extra expenses that come with raising a high needs child. I knew that was about $40 a week, but I was positive there would be other benefits or supplements that would help me care for my son.

By Natasha Mileshina, via Flickr

I had quit a part-time lecturing position at a local university, to be home full-time with my boy after the diagnosis was confirmed, so I could put all my effort into his therapies and provide him with the intensive and consistent level of care that he required. I’d never left him with a babysitter, I’d always shared the care between my husband and I, as I’d learned early on that my son’s communication and behavioral difficulties meant other people couldn’t understand or cope with him. So I sat at that WINZ meeting knowing there were benefits for the unemployed and benefits for single mums, I had no doubt there would be some sort of benefit or assistance for a mother who couldn’t work because she had charge of her disabled son.

I was wrong. At first I didn’t believe the WINZ worker when she said there would be no more than $40-something a week available to me. I told her to go make sure. But no, I qualified for no other financial supports. I couldn’t qualify for an unemployment benefit because I wasn’t actively looking for work, and I lived with my husband so I wasn’t a single mum. We were reduced to living off my husband’s income, and what little I could bring in from working one evening a week as a tutor. We earned such a little amount between us that we did get a yearly lump-sum payment under the Working For Families scheme, but there were no actual benefits directed at parents who had had to quit their job to become full-time carers for their disabled child. How is it that what I was doing, was worth nothing?

I tried not to get too bitter about it, and we got on with life. We lived in a cold mouldy home for years with our son, unable to afford anything better. My health suffered badly over the years, both physically and mentally. I was isolated, under-supported, and not getting enough money to live well or to do the best by my son, but I did the very best that I could.

But not everyone accepted that this was fair in our society. At the time, I was unaware of the families going to court, fighting to get the Government to pay them for the care of their disabled children: A Government that would pay total strangers to do the work, but refused to pay family members to do the exact same work for the same people, even when the family members were the best or only suitable carer available.

One of those fighters is Margaret Spencer, an elderly woman who is the full-time carer of her 44 year-old son Paul who has Down syndrome. Her case is still going through the courts, but the possible outcome for her seeking financial recognition or her work and those in similar positions, has been hampered by the current Government with their recent legislation (I won’t recap all the details of that legislation, you can learn more about it from my previous post). The reason I find myself writing about this topic again, and felt I had to share my own story above, was because of this particular quote from someone who works for the Ministry of Health, in relation to Margaret’s case. The quote was in an internal email, clearly not intended for public eyes, but shared in the court via Margaret’s lawyer:

She really laid the sympathy vote on, right on, dragging poor Paul around like a tatty teddy bear, telling the committee what a martyr she was.”

Here’s the position that us carers are in then: We either quietly work without financial recognition or assistance, or we dare to speak up about it and share our stories whereby we are labelled “martyrs” in a derogatory and condescending manner.  The very people who are meant to be helping us to help our children, apparently think that we should shut up and sit down and not fight for our rights (and this is a matter of legal rights – not a matter of simply asking for a hand-out – as made clear in the earlier court cases in regards to discrimination).

This is to say nothing of the reference to Paul as a “tatty teddy bear.” Would we be OK with other adults being referred to as inanimate, worn-out property of another human being? Why was it considered OK to do this to a disabled adult?

Whatever you may think of the case and the money at issue, be very clear on this: What parents of disabled children do, is more valuable to this society and to their children, than the huge number of other situations our government thinks worthy of regular sizable allowances. If you don’t think we deserve a living wage, then be very clear about the consequences for these families; you are only shifting the financial and health burden further down the line, and making it a lot worse for all involved. Also then have enough integrity to say that neither should a huge number of other situations (many of which are actually voluntary situations) receive financial support from the Government. The way things currently stand, is indefensible, and the heartless quote from that Ministry of Health worker helps me see that the problem is not just one of money: it is one of attitudes.

We deserve respect. We deserve recognition. Asking for these things does not mean we see ourselves or want others to see us as martyrs, we just want people to understand the huge value and worth of what we do every single day, into our elderly years when everyone else’s children are off starting their own families, and most elderly are cared for by their children instead of still being the primary carer of those children. We shouldn’t have to argue this before courts, it should be obvious.

My own family is becoming less impacted by my son’s autism as the years go by, so years from now I hope to be in a situation that will allow me the time and money to be able to help people like Margaret fight these injustices. For now, all I can offer her and others in her situation, is my understanding and support, which is more than she appears to have received from those best positioned to make her and her son’s life better. So thank you Margaret, you speak for thousands of others, and the country is listening.

This entry was posted in Opinion on News stories on autism and the law, Parenting an Autistic Child and tagged , , , , , , , , . Bookmark the permalink.

8 Responses to Of Tatty Teddy Bears and Martyrs.

  1. Wife of Jack says:

    I thought Paul looked very sharp and well turned out in his suit last night on the news. Nothing tatty at all about him! He has every right to be in court with his Mother. After all the case directly impacts on his life. It just sums up the problem, it’s all about attitudes. It’s all right for parents to be forced into an economic ghetto not of their own making because the people they are caring for are not viewed as having real worth or importance. Underneath that MOH worker’s comments lies an unfortunate truth. Disabled people make bureaucrats very uncomfortable. The inhumanity and contempt in that email is heartbreaking.

    Margaret you are not a martyr, you are an inspiring person who deserves a fair go.

  2. Hilary Stace says:

    Very well put as usual.

  3. Rosemary mcDonald says:

    Sadly, the last time I was called a ‘martyr’ was by the parent of a disabled child who had been lured into a ‘backdoor’ arrangement so they could be paid as the child’s carer. I tried to warn this understandibly desperate parent that such an arrangement could lead to a fraud charge…the MOH has done this. Also, I tried to appeal to this parent’s sense of solidarity with the plaintiffs in the Atkinson case. I made these pleas as the significantly more financially disadvantaged unpaid carer of my tetraplegic partner…who too had been offerred a couple of ‘backdoor deals’, which I rejected. Back then…I honestly believed that truth and transparency counted for something.
    At least this case is talking about the 272 ‘exceptions’ that the HRRT heard about. I am very saddened that NONE of those families have ever come forward and told the New Zealand public the why, hows and wherefores of those arrangements. In my partners case, there were no MOH contracted homecare providers who could meet his needs in our area, and we live 10ks from the town boundary. We more than qualified for an exception under the old policy…but failed to secure this. There was some seriously dubious dealings between the MoH, the NASCs, contracted providers and some disabled and family carers. I believe there is worse to come unless disabled and carer groups can present a united front.
    Good on Margaret for doing this, and for putting herself out there for potential derision from the right wingers who love to get all over this issue with their nasty little comments. Kia Kaha.

    p.s. I thought Paul looked pretty sharp too. He scrubs up better than most!

    • Thank you for sharing your own experiences and the stories you have personally encountered too; we need to hear about these to get a fuller picture of what’s happening and why, and the injustices in the current system.

  4. mamabeanablog says:

    Wonderful blog and needed to be written! It is very frustrating raising a child with Autism. When my daughter was younger she was misdiagnosed for years. I fought long and hard to get the help she needed, even going in front of a judge to fight our case for disability and health insurance.
    take care!

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