Reblog: #worldwithoutdowns: A Challenge for Christians

My first thought when I heard about the new, safer pre-natal test for Downs was ‘thank God there’s no test for autism!’ Abortion of children with Downs is eugenics by the back door, in my opinion. I know there will be those who disagree. But I also know that we are firmly instructed ‘do NOT judge’ as well as ‘love one another, as I have loved you’ and the way He has loved is without boundaries. None of us is worthy of Christ’s love. So what do we do? I believe this post from Included by Grace makes some very pertinent points.

Then people began to bring babies to [Jesus] so that he could put his hands on them. But when the disciples noticed it, they frowned on them. But Jesus called them to him, and said, “You must let little children come to me, and you must never prevent their coming. The kingdom of God belongs to little children like these. I tell you, the man who will not accept the kingdom of God like a little child will never get into it at all.”

Luke 18:16-17 (Phillips)

NB I have not seen Sally Philips’ BBC documentary as we don’t have a television license. I did catch her on BBC Radio 4 the other morning, speaking about the programme, the Downs community, the current very high rate of abortion for those diagnosed with Downs before birth, and about her son, whom she clearly values as much as I do my own dear boy.

includedbygrace

I was going to write a ranty post about the implications of genetic screening (and it may still work out that way) but in the middle of composing it in my head, I got a message from a friend who is isolated from her church, her family and community because she is a single mother with a severely autistic child. Many Christians would talk about the value of life and speak up against abortion, but then sit in churches that exclude these ‘valuable lives’ because they are so inflexible and inaccessible to them. Changing things for the few is met with horror at the mere thought. So families and adults with disabilities are left out, excluded, not welcome.

Watch Sally Phillips documentary “World Without Downs”

I wanted to join in the throng of ‘all life is sacred’ with the many that have responded to Sally Phillip’s BBC documentary that I…

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Reblog: The Paralympics, Disability and the Church

I sometimes wonder if Jesus would recognise what we now call ‘church’. People who are different, be it physically, emotionally, financially or otherwise, should not only be welcomed in our churches but valued and esteemed. Jesus always made room for those on the fringes. Throughout the bible God used the (seemingly) small and/or broken for His glory.

I am not virtuous because I have a disabling illness, paralympian or not. Perhaps the illness makes me more aware of my powerlessness (that’s another post) but the smallness of being that comes with struggles is exactly the way He – the Great Redeemer – grows big, bigger than anything I ever dreamed, even though to all outward appearances I yet remain in the smallness.

I’m very tired today. Neurological disorders tend to do that. So I am not sure if I am making sense 😴 Should probably not be blogging so I’ll leave it there. Please read Matt’s post. He makes some very pertinent points that really should be higher up the radar of Christianity today.

The Left Hand of Ehud: Matt's Bible Blog

The Paralympics start today!

I have two children with disabilities, becoming their dad in 2012. That was around the time of the London Olympics, withits mythic opening ceremony, and the first time I remember theParalympics really entering the public consciousness.
Or maybe it was just my perspective that had been broadened; maybe I was seeing the world with new eyes and a different perspective and a glimmer of awareness of my own privilege. A lot of that has beenworked out on this blog.

Four years later and the Paralympics have come round again. There have been concerns about their viability due to poor ticket sales, and that might be telling, but ultimately the Paralympics allow us to celebrate sporting excellence, and
that’s great. I hope Team GB win lots of medals, and I’ll becheering on Team Refugees too. I’m not a sportyperson…

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For the Sake of Flicking Strawberries

I used a wheelchair today in the supermarket. Although I used a mobility scooter when we were in the Peaks, this was the first time I have used an actual wheelchair during this phase of illness. The last time was 20 years ago, more or less.

I guess it’s good that they provide them for customers. And it was good to have such a helpful child pushing me round and doing all the physical stuff. What a blessing a helpful child can be! But I didn’t like it – the stares, the comments. Not rude comments, mind you, it’s just that people who might usually ignore you feel obliged to say something, at least I think that’s what is happening. I think they’re wondering why someone who doesn’t look particularly ill or infirm requires a wheelchair. It’s not everyone, of course, just a few perhaps ill-mannered folk who never learned that it’s rude to stare. But even if the vast majority ignore you, it’s the handful who don’t who make it awkward. I felt ashamed of my illness. Ashamed that my 11-year-old daughter is taking on the role, albeit temporarily, of caregiver. That’s my job. And if I don’t have the role of caregiver, what do I have? I really don’t like to be the centre of attention, least of all when I’m feeling low. Which I was, by virtue of needing the bloody wheelchair in the first place. There’s no doubt about it: people look at you differently if you’re in a wheelchair :-/

I felt petty and childish when I asked God, later, when I will get to live my life. Illness has to be one of the loneliest ways to go through life. In my teens I spent a lot of time alone because of this illness and because I missed so much school. I was also depressed and very wary of pretty much everyone, so it was hard to maintain friendships. Then in my twenties, although physically I was healthy, I was deliberately isolated by my controlling, much older and abusive (so-called) husband. It’s one of the things that abusers do. They isolate their victims so that they can maintain the high level of control (and get away with it).

Eventually I divorced him and later met my dear Frank. Last year I went through EMDR and although it unlocked many barriers that trauma had created, I’m still unwell and probably worse, physically, than a year ago. I turn 40 next year and I am still waiting to be well enough to have a proper job, for the sake of flicking strawberries (tried to come up with something less rude than the usual…)

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A flickable strawberry. From idpinthat.com

Dear God, I know they say life begins at 40 but I never thought anyone meant it literally. I felt like crying earlier, which is progress, because usually I’m so detached I don’t feel much at all, but I still didn’t actually cry. How pathetic – to feel like crying but not even being able to do that.

If I were a twitterer I’d probably create a new hashtag: #effinguseless

Still, the great thing about reading your bible every day is that you can bring to mind appropriate verses. So here are a few words from the Psalms that remind us that struggle is universal, to some degree, and that we’re never alone, however much it feels like it (thank you, God, for Your Word):

These things I remember as I pour out my soul…

Why are you cast down, O my soul,

and why are you disquieted within me?

Hope in God; for I shall again praise him,

my help and my God.

 From Psalm 42:4,5 (NRSVA)

 

The Bull’s Horns

We’re having a lovely holiday in the Peak District at the moment. Home very soon. No camping for us this year because I’m really not well enough, so we found a cottage that was not too expensive and here we are. I have had the use of a mobility scooter, which at first left me feeling really down. Also, my Dad said something that made me feel quite bitter, for a good few hours. It would have soured the whole holiday, if I had let it. Dad’s a professor and a highly regarded one at that. He has just spent a fortnight teaching an exclusive Masters course to some very high-paying students at a lavish English hotel.

“My love,” Dad said, “You’re more intelligent than 90% of the students I teach. It would be such a shame for you to not finish your degree.” He said this because I told him I had signed up to continue my degree from October, but that if it didn’t work out this time I was going to throw in the towel and admit defeat. I’ve spent five years studying so far and have only earned ¹⁄3 of an honours degree. Illness and circumstances have repeatedly got the better of me, though I love learning.

To get back to the point, I don’t want to start using a wheelchair or mobility scooter as a regular occurrence – just as I don’t want to give up my degree – because that seems like an admittance of illness as my life state, rather than keeping my focus on getting better, ‘pressing on to win the prize’, as it were. But it occurred to me, as I was negotiating painfully narrow paths and inattentive pedestrians, that instead of feeling humiliated I should grab the bull by the horns, so to speak. So ever since I’ve been wheeling my way along humming this:

As you listen, imagine not a boldly handsome machismo who only has to blink and a scantily clad lady falls at his polished black feet – and into his bed two minutes later. No, dear friends, I ask you to imagine instead an overweight, not-quite-middle-aged woman in a mobility scooter careening along the pavement of a sedate English town. She has about her a vacant, yet determined, air somewhat akin to a female Mr. Bean. A Mrs Bean, if you will. Got the image? There you go. That’s me.

Reblog: Mental Illness doesn’t define me (or anyone else), with a TED talk by Elyn Saks

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My son hates to be defined by his disability. He has autism and learning disabilities, so he spends a lot of time trying to convince me that he’s ‘clever’, bless him. He is clever, just in a different way to other people. I bet none of my readers could spend hours talking about the different phases of twilight and the movements of the sun and how the times of the sunrise and sunset change over the course of a year! He’s not like other people and he never will be, but he’s Prince, not ‘autism’.

For the same reason I rejected the term ‘survivor’ to describe me, because I am recovering from abuse as a child and during my first marriage. I finally realised that I was not a survivor – because that still allowed the abuse to define me. Only God defines me. He calls me blessed!

I realised recently that by His grace I managed to move from Complex Post Traumatic Stress Disorder to Post Traumatic Stress Disorder. This amazes me! By the time I had sought treatment I’d already begun to heal, and that was only by grace! Celebrate Recovery changed my life. PTSD hasn’t gone away. I still struggle with some things and I have learned I have to be ‘kind’ to myself, but I am a lot better post-EMDR than I was before. I’m not scared any more. I find myself doing things and then only afterwards do I realise that at one point I’d either have avoided it completely, or been incredibly anxious when doing it (whatever ‘it’ may be). I would have been irritable and tearful… and now I don’t even notice.

Excellent post from Laura Droege; I had to share it:

Exhale and Lean

I read a very interesting post from Laura Droege this morning. She says ‘I’ve… found that the more open I am about the illness, the less it defines me.’ Laura writes about her battle with mental illness with a tender honesty. There is a real strength in her writing – one that only comes through endurance. It’s a fascinating post, please do click the link.

As for me, I refused for years to admit that there was anything wrong, because as far as I was concerned it was my life that was the problem, not me. Over time, God brought me to a place where I had to face up to the fact that I was not well. I have been on medication for over a year and for the first time in my adult life I am not depressed. As I told my psychologist with whom I’ve just begun therapy, the stupid thing is that I never knew I was depressed until I began taking anti-depressants! I just thought that that was normal because I couldn’t remember life not being horrible. Praise God for medication (and even more for my patient, loving husband) o_O

As I thought more about Laura’s post, I recalled a time, years ago, when I was a teenager. I was receiving treatment at a private hospital that specialised in rehabilitation after serious head injury. One day in the summer, my nurse and I were standing by a window looking at the garden, green and vibrant with colour as only an English garden can be. A butterfly fluttered into view and settled onto the purple flowers. I remember the purple and the green, but I don’t recall what plants they were. Just behind the butterfly was a young man in a motorised wheelchair. We realised he must be paralysed from the neck down because he was controlling the chair with his head. My nurse sighed and tutted as she saw this young man, “Oh,” she exclaimed, “don’t you feel sorry for him!” This was a statement, not a question.

I looked at the man and frowned. “I don’t.” I replied.

My nurse turned towards me, aghast, “You don’t feel sorry for him?!”

“No.” I said, but I couldn’t explain why.

20-something years later and I think that what I instinctively grasped was that people must be endlessly pitying this young man – and to pity him continually deprived him of dignity; instead it somehow defined him by his injuries, rather than as a human being. Christ never saw people as defined by their brokenness, in whatever way that was manifest. On the contrary:

‘Some men came carrying a paralysed man on a bed, and they tried to carry him into the house and put him in front of Jesus. Because of the crowd, however, they could find no way to take him in. So they carried him up on the roof, made an opening in the tiles, and let him down on his bed into the middle of the group in front of Jesus. When Jesus saw how much faith they had, he said to the man, “Your sins are forgiven, my friend.”

The teachers of the Law and the Pharisees began to say to themselves, “Who is this man who speaks such blasphemy! God is the only one who can forgive sins!”

Jesus knew their thoughts and said to them, “Why do you think such things? Is it easier to say, ‘Your sins are forgiven you,’ or to say, ‘Get up and walk’? I will prove to you, then, that the Son of Man has authority on earth to forgive sins.” So he said to the paralyzed man, “I tell you, get up, pick up your bed, and go home!”

At once the man got up in front of them all, took the bed he had been lying on, and went home, praising God.

Luke 5:18-25 (GNT)

This is also why the debate around the abortion of disabled foetuses is frightening, whatever your views on abortion in general. My son has autism. There is no pre-birth diagnosis for autism. If there were, would women choose (and in some cases, be encouraged by medical professionals) to abort their child, like they do with Down’s Syndrome? Is a disabled child ‘worth’ less than another child? Is their individuality defined by their disability, or by their humanity? What if we could diagnose susceptibility to mental ill health, short-sightedness, asthma or dyslexia? I’m loathe to say it (because often references to these things are made when a person has run out of other arguments) but didn’t the Nazis promote the same thing when they tried to ‘exterminate’ the disabled and the mentally ill? Eugenics: alive and well in the 21st century, disguised as ‘informed choice’.

My son is not autism. He is a fearfully and wonderfully made human being. He is a soul. And in reality we are all broken, in one way or another. Many people spend their whole lives trying to ‘make up’ for their brokenness: think of the cult of celebrity, for example. Many, many people think being ‘famous’ will make them happy, or being famous will make them ‘better’. Wealth is another way people try to fix their brokenness, sometimes they choose to pursue power. None of these things actually work. They may appear to, but all they can ever do is paper over the cracks. They don’t fix the structure. They’re just houses built on sand.

I don’t know if any of us are ever truly ‘fixed’, but we each have a God-given dignity that, when we put our trust in Him, when we recognise the grace given in this blessing of dignity, we are set free from all the lies the world (or our own heads) would have us believe. We don’t have to struggle to fix ourselves. We just have to exhale, and to lean on Him.

‘So Jesus said… If you abide in My word [hold fast to My teachings and live in accordance with them], you are truly My disciples.

And you will know the Truth, and the Truth will set you free.

They answered Him, We… have never been in bondage to anybody. What do You mean by saying, You will be set free?

Jesus answered them, I assure you, most solemnly I tell you, Whoever commits and practices sin is the slave of sin.

Now a slave does not remain in a household permanently (forever); the son [of the house] does remain forever.

So if the Son liberates you [makes you free men], then you are really and unquestionably free.’

John 8:31-36 (Amplified)

I wrote about a similar theme in my post ‘Why I am Not a Survivor’. The link is to the right of this page. Thank you for reading. Do you have any thoughts on the subject?

‘If you have never cared for a child with autism, you don’t know what it is like.’ Excellent post from Special Needs Jungle.

Special Needs Jungle

Tania writes:

It’s Autism Awareness/Acceptance Day, Month, whatever… lots will be written today about what autism is and what it isn’t.

No one expects to have a child with an ASD/ASC, whatever they’re calling it this year. Once you have the diagnosis, it’s like entering a parallel universe of impenetrable mazes with multiple dead-ends, where people speak in strange acronyms and expect you to understand what they’re talking about.

You can get lost in the battle to secure services, support, suitable education and the funding thereof. As your child or children (in my case) grow, you will encounter different challenges such as transition to adulthood, training, independence.

If your child is five or six, you’ve probably not even thought this far ahead. This is just as well; it would be too much to cope with. We are now at this stage: my boys are 15 and 13.5 and both have different levels…

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