Where is the shock and anger?

Posted on Apr 27, 2014 | 13 comments

I’m the mother to May, a severely disabled little girl, and I’m opening today’s post with a controversial statement:

Your prayers are not enough.

Photo by Kevin Dunnett

Photo by Kevin Dunnett

Thank you for praying for us. And for the 800,000 other families in the UK who are raising a child with disabilities.* It’s not that we don’t appreciate all the goodwill sent our way.

But what about a prayer combined with a lasagne? We could really use a lasagne. Or a few hours off on a Saturday so we could do our shopping. Or for you to sign a petition calling for the end of welfare cuts. Or for more shopping malls to install changing places alongside their disabled toilets.

Being able to change May’s nappy without lying her down on a pee-soaked floor – that would be helpful.

Or, as Barbara Ellen suggested today in her Observer column: “Perhaps what disabled children and their carers need is not the expected reservoir of genuine but toothless public sympathy; rather, it is the return of shock and anger.”

And where is that? When only 16% of mothers of disabled children can return to work and only 3% full-time, compared to 61% of mothers without disabled children: where is the shock? While at the same time, we witness the destruction of the welfare system that would support these full-time carers (and imagine how much unpaid, full-time carers save the country): where is the anger?

When there is no ring-fencing of public funds for disabled children or carers – and the government cuts drastically the money local councils are given, the result is going to be an end to services. The end of speech and language therapy. The end of equipment. The end of respite care. Where is the anger?

It is accepted these days for the country to take on the chin the idea that the government has to make “difficult decisions” in hard economic times. That “hard working families” deserve more.

A year ago, we were preparing to take May into the hospital for major surgery. In the months leading up to it, my husband and I had been lying with her all night long while she screamed in pain. Held her day and night as her exhaustion sparked a series of seizures.

We never know. When she goes into these marathon sessions of pain and fevers and fits, I don’t even know for certain she will pull out again. Instead, I am literally inches from her while she screams every waking moment – now going on five days – and all the while the dishes pile up, cartons of Chinese food litter the kitchen and my schoolbooks sit in front of me never marked. In between worrying over how I will ever complete anything again because May refuses to let me put her down, I wonder if this day is going to be the day that she never comes back to us.”

I would argue no family works harder than those where one parent stays awake half the night, every night to make sure they don’t have a seizure. No family works harder than those getting by on half an income, because no workplace is able to accommodate the sudden and frequent trips to the hospital they have to make. No family works harder than those with parents struggling with fatigue, bad backs and aching arms lifting their child from seat to walker to wheelchair.

Hard working families do deserve more.

Thank you for your prayers. Thank you for your kind thoughts. But, maybe also start with a lasagne. And then, together, we can tackle the rest.

Where is the shock and anger? Comment to tell us what you think.

A huge thank you to everyone who has offered more in the past couple of months. Our campaign to get disabled trolleys for children in supermarkets continues to move forward and I’ll post later this week about the second version of the trolley that May is testing out for Sainsbury’s.

*Department for Work and Pensions (2013) Family resources survey: United Kingdom 2011/12 (PDF). Photo credits: Kevin Dunnett and Stacie Lewis, neither should be used without permission.

13 Comments

  1. I don’t think a parent with a non disabled child will ever know how hard it is for the parents of one. For those reading I don’t truly even know how difficult it is for Stacie & she is my sister. We get so busy in our day to day lives, but as a community we can help others with more than just prayer. I don’t know about you but if I am asked to help I will. I don’t always do it on my own. I like when Stacie puts the links where I can help & the follow through of how progress is changing.

    • I agree. I can do only so much on my own. Together, we are stronger.

  2. I have spent 16 years caring for my physically disabled son with complex health needs. In that time I’ve not had a full night’s sleep, I’ve not had an hour without anxiety for him. We’ve been to the brink and back many times and pulled through. I sacrifice much of my life to care for him and I’d like wider society to recognise that. To support me in doing that. Much respect to you Stacie in highlighting these issues, when you have so much going on in your life. Let’s hope we can stir up some shock and anger. http://myjourneywithjoseph.com/

    • “I sacrifice much of my life to care for him and I’d like wider society to recognise that.” And it would be so easy to show you this small respect. Instead the government goes the opposite way and implies people who access services are trying to defraud the government and “steal” from hard working families. Who are these hard working families if not us?

  3. Thank you Stacie for this very important post, you bravely and eloquently say what many of us are too polite (or too British) to say. What kind of society are we if we do not support those who need it most?
    Hayley

  4. There is a quote by someone and I am sure you have heard it before. “The smallest acts of kindness are worth more than the best intentions”. I really do believe this. For me, my experience is different. I am not a special needs parent. I have a disability but also my best friend has a traumatic brain injury. I feel a lot of what you are saying with her and her situation. People always say to me “oh I would love to visit!”
    Well. Do then. Stop saying you would love to and do visit. We are home so much or we can come out too!
    Liking a photo of her or writing a long comment that she can’t read isn’t the same. Don’t feel like you’ve done your job there. I am not saying come and help us, I am saying come and be a friend with her. Sit and play with her on her iPad.
    Your intentions and thoughts aren’t enough. Not when you have the ability to do more , especially when you claim you want to to do more.

  5. I am glad you are asking for help. Some people need a reminder to help out. Some will follow your lead and others just don’t think about it and need to be summoned or pushed. Others just don’t care. I think it is also up to you and other parents of disabled children or adults need to speak up just as you are doing until people step up. Send out a list of all the things you would like help with to all your friends and I am sure they will step up. Some don’t think that you need help as you are strong or a take charge person and they need to be reminded how difficult it is for you and others in your same position.

  6. I’m angry for you and for my friends who are the wonderful parents of a little boy with severe brain damage.
    I’m fuming having heard on the radio yesterday about the £800 compensation awarded to the prisoner who claims his photos and nose hair trimmer were lost by the prison… He is in on 3 counts of murder! It Already costs £50,000 to keep him on life sentence.
    My mum and I both shouted at the radio with regards to the funding required for the NHS and care and therapy needed for Theo!
    This country needs it’s head checking-until it gets it sorted we’ll keep raising money as we’re ”Thinking of Theo’ (https://www.justgiving.com/thinkingoftheo/?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=thinkingoftheo&utm_campaign=pfp-share)

    And I will make a lasagne

    Xxx

  7. Thank you for such a fantastic post. As mother to a disabled two year old I have been dismayed that so much recent media coverage of the challenges of caring for a disabled child has focused just on the child..not the cuts. It isn’t my child who has caused some of the greatest challenges. Yes, we have had fear and heartbreak from his medical condition. But the endless frustration has come from a system that seems completely unfit for purpose. I am one of the many mothers who has had to give up a job because of lack of 1:1 nursery support. We fall in the absurd gap between ‘healthcare’ and ‘social care’ with each one claiming we are the others problem for over two years. My son costs money. Fact. But that, in my opinion is the entire point of a social/healthcare system.

    • Well said, Sarah! Nursery support is a major bugbear for me. There is only a short-term economic gain for withholding proper support. In the long term, allowing a child to attend provision where professionals help them learn any number of skills – as opposed to them being dependent on someone else and the cost of that dependence – is so valuable. Likewise, helping you work. Shouldn’t you be allowed to make a contribution to the wider world, earn money – pay taxes?

  8. I do so agree! Prayers are nice. We certainly need them but where is the practical help and the outrage over the situation? I especially can’t stand it when my daughter comes home from church (Bethany and I can’t go to church) to tell me someone told her to tell me that they were thinking of me! I’d love for you to share this at Friendship Friday at http://faithfulmomof9.com

    • Thanks, Sylvia – just shared it. And I think your example is so perfect. I wish more people took action in just this way, to make church accessible. A great start.

  9. Here in southern US, when someone dies, the accepted, and expected, thing to do is to cook for them. Casseroles that can be frozen in trays that don’t need washing and returning are the preference. These pile up in the grieving families freezer, allowing them to bake and eat, no prep or washing of dishes required.

    What I’ve never understood, however, is that this NOT is common practice for those with chronic health issues. Maybe it’s that I grew up the big sib to a child a lot like May and watched my mother drag herself through life on less than 4 hours of sleep per day for a decade.

    I’m incredibly lucky- about 1/3 of the time I call around for help, I can manage to get said help. My grandmother helps with cleaning, my grandfather chauffeurs me to specialists an hour or so away (and naps in the car while I’m in the doctor’s office, lol), and my aunt helps in my garden. But after only 1 year of living alone as a disabled adult, I’m tired of constantly *needing* to ask for help. When someone volunteers it? Heavenly.

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