“Heroes – every one”

One of the upsides of self-employment is that I’m very often home in the day. One of the downsides is not earning much money, but let’s face it, a lifestyle that allows you to get up later (sometimes) and watch “This Morning” can’t be all bad!

I have something of a complicated relationship with “This Morning”. I’ve watched it off and on ever since the 1980s but watching it very often involves me shouting at the tele and stomping round saying that for sure, this time, I’m definitely going to be writing to them. I never do of course.

It’s probably not the “go-to” morning programme for your typical leftie justice fighter.

But at the moment I’m watching it on Mondays because they are running a series of short pieces on it about being a mum to young people with additional needs.

Katie Price goes off to meet other mums looking after young people who are sometimes rather like her own boy Harvey, or quite different, but face similar challenges (only on lower incomes). Actually watching her with these mums and their children makes you rather like her.

She has the “thing”. The thing that all mums of disabled children just get – that thing when you walk into the room and straightaway you know how to be with the kids and their families, what to say (and not say) and it’s like the glass wall which separates you from all other mothers, their kids and the rest of the world, just isn’t there anymore.

During these short pieces on the programme, just for a few minutes our own world is centre and front on national TV and you feel a sense of shared pride in what we do in our lives and the differences that we make. The love we have for our children and the love that our beautiful children have for us.

Then it ends and Philip Scofield looks to camera and says, quite seriously; “Heroes……every one”.

Arrrrgggghhhhhhhhhhhhhhh (as I so often say on Twitter).

Apart from the annoyingly patronising aspect, which just for now we’ll just gloss over, promoting this type of cliché on a morning magazine programme really, genuinely concerns me. A great many people watching won’t know any children or young people with disabilities/ additional needs and they certainly won’t know any of their parents. As this is a totally unknown world to them, they are just going to take what Philip Scofield says at face value.

They go away from this programme thinking “aren’t those women wonderful, but how I pity them. What terribly sad lives they have looking after those challenging and almost unlovable children”.

And from there it’s really just a very short hop to “wouldn’t it be better for everyone if they weren’t around”.

One of the mother’s we’ve met through the programme (who was actually today’s mum) is the mother of two young men with severe learning disabilities. She said in her interview that she is terrified to think what will happen to the boys in the future after she is no longer able to care for them. She worries about it a very great deal.

Because of who I am and the world that I live in, my answer to that would be to say that she needs to be thinking now about how they might be able to stay on in the house which she owns and be cared for by carers appointed and trained by her, using their personal budgets to pay for it. Maybe someone else in the family who loves and cherishes them would like to become their advocate and maybe there’s even a local charity who would like to be involved. If she chooses the carers well and with very good luck and her own good judgement, then there might be a happy outcome for all.

But let’s face it; the majority of people watching are simply not going to have that response! Even if I sat on Philip Scofield’s lap to say those things they wouldn’t know what I was talking about.

So instead this programme reinforces that old, old, tired old (well I know I’m pretty tired of it) message that these women are saints and that they, their lives and their children are not like ours – thank god. We should admire them and feel sorry for them in equal measure. Obviously their children are a burden, not just to the poor families but also to us all as we’ll always have to pay for them. When they are little they can be quite sweet in a kind of “tiny Tim” (poor little sickly child, not long for this world) way, but when they get older, larger and hairier, aren’t they just best kept out of sight till they die?

Now some people reading this will already be saying “I don’t think like that and I would never think like that” and I say good for you, brilliant, fantastic. But I also think anyone reading this who doesn’t have anyone disabled or with additional needs in their lives who they love, or anyone who doesn’t work with our kids and young people – if you think the majority of people in this country don’t think this way, you are simply kidding yourself. And the worst of it is, they don’t even see anything wrong in this!

A few days after Nico died my mother’s cousin wrote to me. In her letter (and I quote) she put “although you are feeling sad now I’m sure you can see that this is very much for the best. What would have become of Nico as you and (MN) become older yourselves? For him to die before you is a kindness”.

No comment.

A week before Nico’s inquest there was a family birthday in the MN’s family and he went to the gathering. I didn’t go as I didn’t feel able to face it. When he returned I had the strong impression that he wasn’t sure he should have gone either. He said very little except to say that they really did not have a clue what we were going through.

Later, much later – long after the inquest, he told me that at this family gathering someone had said to him “Life must be much easier for you now, without Nico”.

So what I do know is that if I must have a label I know I’d much rather be a hero than a foul, self centred, uncaring, bigoted, hypocrite.

Just saying you know……….. No offence meant of course.

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12 thoughts on ““Heroes – every one”

  1. Huge hugs of solidarity for all of you tonight, you’ve encapsulated the frustratingly banging-your-head-against-a-brick-wall conversations parents in our situation are all too familiar with. There is a glazing over of the eyes as they take stock and realise that we are somehow “other”, that we aren’t really going to be worth pursuing as a potential friend, that we are apart, different, separate, and not like them. We know that they haven’t listened to a word we’ve just spoken, they not only don’t “get us” but they actually don’t even want to try. In that moment, another invisible wall has been built between us and mainstream society, and we are sidelined, marginalised and isolated just that little bit more. Then we meet people like you, Rosi, people worth knowing, people who do get it, people who are giants in the real world with integrity and heart and soul – and suddenly all the others don’t really matter quite so much. I’m so proud to call you a friend, and I just love this post you’ve written. I hope Philip Schofield reads it too xxxx

  2. Thank you for your blog tonight, I’m always astounded at how insensitive people can be. I worry what will happen to my grandson when his parents can’t be there for him and your practical suggestion has given me food for thought. Nothing can replace your child but you are keeping his memory alive and his life meaningful. God Bless you and MN x

  3. It is a whole different world when they are grown up….stress level dealing with the care on top of promoting independence and being mindful of data sharing issues but having to do the paperwork as no one agency has ever been consistent in sending it in the requested accessible format. I do get a bit jealous of families that have less complex dynamics.

  4. Rosi I’ve done it/said it !! I met my best friend at the primary school gates collecting children.Me new to the school but with connections to the village and her standing alone. We connected over thirty years ago for whatever reason. Our childhoods are very similar but not much else.Did I think she was a hero because she had so much to do over and above for two of her children besides the rest, yes I did, still do. I think the reality is she is just a doer, she meets the needs of each adult offspring, no imbalance between the young men ( not so young now ) with high support needs and those with everyday ‘Mum’ needs. She is a bit special in action !!, she is not your average example of womanhood seriously.

    And when we met I was Mrs 100% of my children are fine and dandy thank you and she was Mrs 50% of my children are fine and dandy and 50% have a diagnosis of serious illness. That all changed in the years to come but we are the same women, it is entirely possible that when other women look at you with/without your child/children they are just looking at ‘you’. I gawp at babies and children all the time, and smile at them/their parent , I may well have caused offence if anyone mistook my behavior for pity.

    The look the other way disability is not part of my life brigade do exist of course, whilst actually inhabiting the same universe as everyone else with an equal risk of disability occurring in their lives. The comments can be excruciatingly painful , my husband received the spoken condolence that our daughter’s death was for the best as she was only a vegetable. An elderly lady from our village ,fully paid up member of the church said something similar to me. It happens, yes it does.

    • did you ever have a comment/situation so awful that it turned to terrible hysteria of the black humor sort ? when the vicar arrived at my home to arrange my Mother’s funeral he greeted the dog as Mr Wiggy Waggy and gave a cheerful hello to myself and my youngest daughter who for all the world to see was in a wheelchair. He spent a few minutes enquiring about the deceased and then asked my daughter a few ‘ obvious ‘ questions. She obliqued as best she could with her communication difficulties and his poor hearing. To our horror he then spent the remainder of the visit discussing the various merits of ” going batty or off your legs ” We laughed and cried at that one later.

      • the awful poker face of that woman ‘ apologizing ‘ on the news made me think crikey how is the person behind the camera not cracking up. LB’s giggles gave rise to a memory of shared laugher and a tight spot. Gifts as you have said from our children, nothing lovelier and arriving unexpectedly.

  5. These kinds of callous and thoughtless remarks are something disabled people have said to them in person as well, even children. I read a blog post by a blind woman who said that even at 14, a man in the street told her that he would rather be dead than blind, when in fact she was quite happy with her condition (she does not even like people praying for the sight she has lost to be restored, for example). I also once knew a lady with EB (a painful and life-threatening skin disorder) who said that her aunt had said to her, at family gatherings, that her life was so miserable that it would be kinder to end it. It’s extraordinary that people think disabled people and their families need to hear their opinions on such deep matters when they do not even know them. If people offered opinions about any other issue randomly, they would be regarded as extremely rude.

  6. These kinds of callous and thoughtless remarks are also something disabled people have to deal with themselves, even as children. I recently read a blog post by a blind woman who had a man in the street say to her, aged 14, that he would rather be dead than blind. In fact, she had a good life and did not even particularly want her sight restored as most of her memories had been formed without it (she was not totally blind). Another lady I used to know, who has EB (a painful and life-threatening skin disorder), told me that her aunt had persistently made remarks that her life must be miserable and that she would be better off dead. It’s extraordinary that people think disabled people should have to hear their opinions; if you just volunteered an opinion about something that fundamental to a total stranger, they would think you extremely rude, quite rightly.

    • You were quite right – I actually have a spam box which I never knew about and you were in it! I’ve put that right now. You are perfectly right in what you say. I have so many stories I could tell about people presuming that because Nico was (largely) non-verbal, he couldn’t understand either. This made them think they could say some appalling things both to my partner and myself and about Nico (not actually TO him of course, that would imply he was a person) in front of him. I think this kind of thing is the worst type of ignorance and all you can ever really do when it happens to you is correct them and encourage them to see that they are wrong and to think differently. Behind closed doors I’ve done plenty of teeth-grinding and foot stomping, but to their faces I try to make the conversation one which they will learn from, rather than wanting to run away from me.

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