Week 4: Listening to parents #107days

It’s hard to believe that we’re on Week 4 of #107days already, but we are, and this week we’re hoping to explore an issue that comes up time and again, listening to parents and families. We are hoping to reach new understanding through #107days so if you read this post and it relates to your experience, or perhaps you work in a service and recognise the situation but feel like your hands are tied/ears are blocked, or you completely disagree we would like to hear from you. Please do leave a comment and please also share the post far and wide.

To kick off Week 4 we have a blog post from Katherine Runswick-Cole: The #Motherblame Game

A gut wrenching post from Sara prompted me to tweet last week:

Screenshot 2015-04-13 00.25.47

For mothers like me, the Bettleheim reference is familiar. In 1960s, Bettleheim, a psychiatrist, explained the causes of childhood autism as the result of a mother’s cold and maladaptive behaviour; he coined the term refrigerator mothers. Today Bettleheim’s explanation of the causes of autism has been rejected by mainstream psychology and psychiatry, but it seems that mother blaming is alive and well, living in Oxfordshire, as well as many other places across the United Kingdom. Indeed, the Tweets that fill my timeline suggest that mother blame is rife.

In a time of economic austerity and welfare cuts, you only have to open a newspaper to discover that mothers bear a heavy load. Mothers have been blamed for everything from naughty children, the rise in teenage pregnancies to summer riots. They are credited with the ability (or lack of it) to wire their children’s brains correctly, prevent childhood obesity and to create economically productive citizens. It’s tough being a mother in 2015!

But if you have a child with a learning disability things are tougher still. From the moment that your child strays ‘too far’ from the ‘normal’ developmental path, you are under additional surveillance, as the blame game begins – there will be no escape.

You are simultaneously the problem and the solution. You have caused your child’s delayed development (through your inept parenting or your dodgy genetic inheritance, it’s your fault either way) but, at the same time, it is you who must lead the charge to move your disordered child as close as possible towards some sort of mythical norm. Therapies and interventions replace the simple pleasures of playing with your child “you must make him look at you!

When your child starts school, you find yourself characterised as simultaneously grief stricken and in denial. Your grief makes you unreasonable, tetchy, difficult, while being in denial leads you to make unreasonable demands on the system and on limited resources . You continue to expect that your child should have the same life chances as other children, how could you, s/he is learning disabled!

When your child becomes an adult, you’ve guessed it, you are still the problem. Your low/high (delete as appropriate) unreasonable (no option to delete the ‘un’) expectations will not be met. Your demands for your adult child to have a life like any other: a home, friends, a job, or, even, whisper it now, a relationship, are more evidence of your failure to accept your child’s learning disability. Surely you should be over it by now? Oh, and by the way, as your child is an adult, don’t forget, they must make their own choices, as long as these are compatible with the narrow, zero-aspirational, budget-centred (not person centred) options on offer.

And then a child dies, in the most horrific circumstances, a preventable death, surely then the mother blame game ends there? No. In the aftermath of LB’s death even Mother Nature got the blame in the over hasty claim for death by natural causes. Since LB died Sara has been surveilled, smeared and blamed for the crime of loving her son and seeking justice for him and other people with learning disabilities.

This week The Independent Panel for Special Education Advice stated on its Facebook page that 90% of its followers are women. At the #JusticeforLB event at Manchester Metropolitan University on 26 January 2015, I introduced Steve Broach, the disability activist and barrister, as having 3,000 Twitter followers – all mothers of disabled children (I was only partly joking!). I have been lucky enough to meet many amazing mothers of disabled children. Like Sara, they fight for their children to have ordinary lives and to be seen as fully human. It is a fight they bear with grace and tenacity while living with under the shadow of mother blame.

But this is a fight no mother should have to take up, and certainly not alone. The mothers of the disabled children I have met are all fighting for the same thing, recognition that their child is fully human too with hopes, aspirations, dreams, strengths, challenges like any other human being. As George Julian said at the Manchester event: [the campaign] is not a disability issue. This is a human rights issue. She’s right and through the #JusticeforLB campaign girls, boys, men, women, mothers, fathers, disabled people and non-disabled people, activists and academics, practitioners and family members have come together. Here there is a disability collective, a commons, claiming the human rights of people with learning disabilities.

While the neo-Bettleheimers still seek to blame mothers, in coming together as #JusticeforLB, we must work to build systems, structures, laws or better still, a society, in which people with learning disabilities are truly seen as being fully human too.

KRCpic

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14 thoughts on “Week 4: Listening to parents #107days

  1. Beautiful and eloquent description of my experience as well as so many others. It makes me so ANGRY! It is just WRONG…

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  3. The blame the mother game is much wider than mothers of children with LD. My daughter has a physical disability and numerous health issues – and of course most of the health issues are entirely my fault – the others apparently don’t exist! I’ve been blamed for almost every hospital admission, I was blamed repeatedly for one health isssue when she was very young which turned out to be a recognisable congenital problem. Did they apologise when it wa eventually diagnosed? Did they hell! http://hariandherdustbinfullofdoctors.blogspot.co.uk/2009/04/baum-years-part-three-to-pee-or-not-to.html

    There is an undiagnosed helth issue but as the glorious NHS has decided not to diagnose it, I am lambasted and pilloried for daring to suggest this problem exists. I becomes a safeguarding issue and some idiot council employee, with no clinical knowledge, controls the decisons of the doctors. If they want to find something to throw at the mother they will – same idiot council employee ( with no clinical knowledge) led the vanguard in trying to stop a medication that madam daughter needs. Council employee even asked the local hospital to review the medication. The hospital concerned does not even have that speciality and said medication is strictly controlled only by a relevant specialist who had reviewed it a few months before! Then there’s the scribbled note in the hospital records. Whilst madam daughter was in intensive care, with us not knowing if she would live or die, a serious(?) safeguarding issue was being raised – all about the time of day I send e-mails – I kid you not!

    Basically, if nothing exists that they can blame the mother for they will invent something. There must be blame on the mother at every opportunity – it’s the only thing that keeps them sane and protected in their plastic ivory towers!

  4. Totally agree my learning disabled daughter was in a realy difficult place aged 10 ish agressive behaviour and scary the only advice and help I received was to call the police or out of hours social services when things went bad. I pretty much knew that would mean her being taken awayy. I searched for help reruned and waited at what was then HEPAC and was pretty much told the same I was gutted but refused to leave without help.

    A referral to The Park was vaguely helpful but I was typically judged as a mother being the problem and my oldest son referred to as “golden balls” (I woiuld not have told them about his drug addiction this would have meant more blame no doubt).

    I gave up my job and did the very best a mum could we some how got through this terrfying time (so scary especially for my daughter) She has very complex epilepsy a severly damaged short term memory hemiparesis and other health issues.

    I fought for her right to read at primary school with the right input although maths will never make sense for her she has loads of books jacqueline Wilson etc and reads for real pleasure but she coulc not tell you page for page what she has read about but reading does give her enormous pleasure.

    I knew that the most important thing for her was to be polite considerate kind undertanding etc she is all of these things and I am so proud of her It was so worth staying with my total belief.

    Now age 30 this May in supported living 24/7 care and helping to manage her direct payment with her own support life is fairly good as long as I continue to be involved she has a great team supporting her but some areas of management and services at the house remain questionable and yes as a Mother I continue to be accused of being interfering and controlling.

    I do know what is best because I am her Mum she still tells me what makes her happy or sad and what worries her some of what goes on at the house is alarming and I do not want this happening for her and so I speak out.I know this does not go down well with them and they would prefer me to keep away..

    She still wants me around when she has a tonic clonic fit and I will continue to be in and a part of her life as long as she needs me and as long as I can I am 67 years old I am terrified of what will happen when I am no longer here.but until then I will continue to fight her corner.

  5. Quote at the end of Phil Willis’ film about handing in Joshua’s petition at Number 10 (together with Nina for Tianze and Leo for Stephen, amongst others):

    “Listen to the parents, and you will hear the children’s voices.”

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