Thursday, 4 April 2013

Can You Be Disabled AND Human?

Last night, as I was finished my most recent post on Sleep Deprivation, I noticed that I had been tagged in a note on Facebook. As I clicked onto it, I read an intensely poignant and impassioned plea from a close friend of mine in which he had tagged a number of friends. The post was written by Haydon Spenceley and he made it clear that he was tagging us, not because we displayed the attitudes he spoke against, but because he believed we would be interested in the note and would empathise with what he had to say.

Haydon was right - absolutely and unequivocally right.  And his message is a very important one.

I asked him for his permission to share his note, permission which he granted, and so that note is quoted in full here; he also shares it on his own blog, "Fire on the Skin". But first, a word of explanation. Haydon is a student with me at St John's Theological College in Nottingham. Like me, he is training to be an ordained minister in the Church of England. Like me, Haydon has a deep and personal interest in issues surrounding disability and the challenges that disability can pose in our society. As you know, I am able-bodied, but my son Adam, is disabled. Haydon has Cerebral Palsy and uses a manual wheelchair. 

This may be the first thing you see about Haydon, but this is not the whole story. Far from it. You see, Haydon may have Cerebral Palsy and as a result, he faces many challenges in life that an able-bodied person does not. But Haydon is not defined by CP. 

Haydon is an immensely skilled musician - a singer and pianist for the band GhostreeHe already holds a Master's Degree and is currently studying for an MTh in theology as part of his training to become a minister.  He is also immensely patient - consider that he lives across the hall from Adam and I at college so when Adam wakes me up eight times per night, he also wakes others and yet Haydon never complains, in fact he demonstrates immense compassion towards me when I'm stumbling into the common room searching for a caffeine infusion. 

He always encourages me on the days when I am finding my journey with Adam to be difficult and am daunted by the challenges that Adam, and therefore I and my husband, are facing as we deal with his medical care and therapeutic needs. Haydon brings me to tears when he tells me that he is awed by my love for Adam and determination to give him whatever care he needs - and I say this not to promote myself but to demonstrate that Haydon is an immensely kind and caring man. Even on days when he is frustrated, in pain or downright angry with the barriers that are put in his way, he still manages to see another person's point of view and to offer kindness, understanding and compassion. 

As will be obvious by the fact that Haydon is training to be a minister of the church, he is a committed Christian. As part of this faith he, like myself, believes in God and the Bible and is determined to demonstrate his faith in daily life. 

But Haydon has a problem.

His problem is with other Christians.

You see, as Haydon explains in his note, many of the Christians he meets believe that God will heal him of his Cerebral Palsy and grant him the ability to walk and, in essence, to become able-bodied. For many years, while attending church, Haydon would ask other people to pray for him to be healed because he assumed that this was what he should be asking for. After all, he had read the Bible and saw many stories of Jesus performing miracles where people who were paralysed or unable to walk, regained their abilities. Surely, if Jesus did that in the Bible, then He is still capable and willing to do this today? Surely if he prayed hard enough and kept on asking and believing, then his CP would be taken away from him so that he could become "normal"? At least, this was what the church was teaching him.

But eventually, Haydon realised something and his realisation is profound.

To continue asking to be healed - and allowing others to ask this on his behalf - was to ask God to change him into a different person than the one he is and was created to be. Asking for healing was the equivalent of suggesting that who he is, precisely as he is, is not good enough. If he was healed, granted the ability to walk, if his CP was taken away, then he would somehow be better - a better person, a person who would be capable of being more and doing more and somehow more acceptable to God.

Haydon realised that this was completely and totally wrong. 

He realised that he is who he was created to be - a man who is intensely loved by God and a man who is good enough exactly as he is. Haydon stopped asking God to heal him. But the problem is that he encounters many other Christians who have not stopped asking for him to be healed, sometimes these Christians ask for his permission before doing so, but at other times, they make assumptions. If he seeks prayer during a church service then of course it must be a request for healing of his body, there couldn't be anything else he might want prayer for - could there? At other times, people encounter him on the street and assume that he wants to be healed - granted the ability to walk - without ever stopping to ask him if this is the case. 

In other words, Christians are making assumptions about Haydon and in doing so, they are denying who he is, the man that he is, and they are denying that he is good enough precisely as he is. Without ever intending to do so, and without ever considering the consequences of the prayers they offer, they are denying Haydon's very humanity. They are assuming that his disability defines him and is so overwhelming to him that he cannot possibly live a full life with CP.

They are wrong.

In the year and a half that I have known Haydon, he has taught me a great deal. The first time he told me that he did not want to be healed of CP, I stopped in my tracks, completely shocked. You see, I had been one of those Christians who automatically assumed that he would want to be healed. Why on earth wouldn't he want to be able-bodied? I had also been one of those Christians who was beginning to do the same thing to my son. In my agony over the guilt, trauma and pain I felt as a result of having a child who nearly died following a preventable infection and was disabled as a result, I constantly prayed for Adam to be healed. Every single night, I would go into his room and pray that God would heal Adam's hearing, his vision, his mobility and in essence, ensure that he would not suffer any long-lasting effects - or disabilities - as a result of the GBS Meningitis. Without ever realising I was doing so, I was in fact asking God to make my son different than he is.

Thankfully, I sat down and listened to Haydon as he shared his story with me. He patiently endured my questions and helped me to understand and find the words to say that Adam has already been healed. When Adam was on life-support in neonatal intensive care, I sat beside his incubator and I prayed - I begged - for God to heal him.  I believe God answered my prayers because Adam is alive. 

God has already healed my son.

I do not (yet) understand why God did not answer all of my prayers or perhaps why He said "No" to the ones that asked for Adam not to have a disability - I'm not going to lie; this is not the path I had envisioned when I was pregnant. But I now understand that in the same way I love Adam with a deep and fiery passion precisely as he is, so God loves him precisely as he is and with an even greater passion. God does not love anyone either more or less because they are either able-bodied or disabled. In fact, those terms themselves attach value by suggesting that one is better or more desirable than the other; I now know that this is wrong. God's creation is immensely varied, beautiful, mysterious and yes, at times, confusing. But there is not one part of creation that is better than another (well, ok perhaps except for mosquitos. He and I differ on the need for mosquitos but I digress...) 

Haydon has taught me something incredibly important that has shifted my entire axis of thought and faith in relation to healing and disability. He also pointed me in the direction of a whole entire section of theology that I had never heard of - disability theology - and recommended a number of books to me, one of which was "The Disabled God" by Nancy Eiseland. In summary, Haydon taught me that the love I have for Adam, precisely as he is, is not wrong. I do not have to hope that Adam changes or becomes a different person in order to be better or more acceptable. I do not have to hope - or pray - that God will miraculously heal Adam and take away his disabilities in order for him to have a full and vibrant life. I'm not going to deny that I do wish Adam had not had to endure GBS Meningitis - it is a horrific and yet entirely preventable infection. 


Adam is enough just as he is. 

I love Adam - fiercely and deeply - just as he is.

And that's ok.

I am immensely grateful that Haydon stopped praying to be healed that day, because in doing so, not only did he begin a journey towards his own self-acceptance, but he also began a journey which would eventually teach me a deep and profound lesson. The realisation that Haydon has helped me come to, is that I can keep right on praying for Adam (and I will continue to do so) but that I do not have to keep praying for him to be "healed" of his disabilities in order to be true to my faith. The same realisation that Haydon came to for himself, is one I have been able to come to on behalf of my son. It is one that I desperately hope I will be able to convey to him as he grows up.

Adam - like Haydon - is enough, precisely as he is. 

To all those people whom I have begun to know through this journey, those who are disabled themselves and those who are the parents of disabled children, you and your children are enough, and are loved precisely as you are.

Below, with permission, is the full text of Haydon's note in which he reflects on disability, his faith, prayer and the actions of other Christians. I hope you will take the time to read it. I believe that if you do - whether you are a person with a Christian faith, a person with a different religious belief or a person with no faith at all - that you will be touched by his impassioned and genuine words.

Please Stop Pretending I’m Not Human
By Haydon Spenceley

Haydon Spenceley
"Good morning sir. May the Lord God grant you the healing that you need. Amen"

I had an interaction this morning, of which this was the sum total. As I was pushing along towards Abington Street in Northampton, a man walked towards me, said those words, hit me on the shoulder and carried on walking. He did not look back. I know. I checked.This isn't the first time this has happened to me in my life (I figure I must need an awful lot of healing, but then don't we all), but today, in the light of a lot of things that have happened in the last couple of years, the camel's back has been broken by the straw. And so, unusually for me, I'm posting a blog on Facebook, to make a plea:

Please, stop pretending I'm not human.

There, I said it. I have Cerebral Palsy, it is a neurological condition, through which I have decreased mobility, increased spasticity (I have a great deal of spasticity, I'm sure you'll all agree) and use a manual wheelchair to get around. As any of you who know my story will be aware, I am, in fact, very fortunate to have the level of ability, lifestyle, prospects, loving friends and family and everything else that I do have. I could easily, very easily indeed, be dead by now.

So what's the problem? Well, it turns out that, in spite of the fact that the government and welfare system are pressing in on disabled people to a greater extent than ever in recent times, this isn't the problem. It also turns out that, in spite of the fact that it is still demonstrably harder for disabled people to get jobs, build relationships and find, be accepted into and maintain and develop community than it is for virtually any people group in our society, this isn't really the problem either. It also turns out that, in spite of this being the easy answer to any question or desire to apportion blame, God isn't the problem either and, wonder of great wonders, neither am I.

No, in actual fact, to my increasing disappointment, it turns out that Christians are the problem. 

Now, I am a Christian. I should be, I'm training to be a minister (I know, ridiculous, let's talk about that another time shall we). I also, those evangelicals amongst you will surely be pleased to know, believe that God is living, present, active, intimately interested, in love and involved in the lives of His people, and that He is engaged in the healing, reconciliation and redemption of the world, and the people, He made for Himself, as He delights in us, so that we might delight in Him. God heals. Now, today. I'm living proof of it. I know many of you are too.

But I've reached a point where I'm not sure I can put up with the dehumanising theology that many of us have foisted upon us by weak, possibly even false teaching. We all have a need. That need is Jesus. No less, but no more either. Jesus, I believe, fulfills every need that any of us has, or will ever have. More than that, He is who we were made for. We don't really have any other purpose other than to love Him, accept love from Him, love ourselves and love others. Nowhere, not anywhere, in all of Scripture, the experience of humanity, or just common sense, does it say, anywhere, that we will not have troubles in this life. In fact, when the Holy Spirit is sent to be our friend, guide and counselor at Pentecost, isn't it actually because we WILL have problems in this life, whether they be being persecuted, sickness, relational difficulties, or even just living in a Conservative-led country. I've been thinking, and saying for quite a while now, that actually, it is a misunderstanding of God and His purposes for us as people, to think that difficulty shouldn't be part of our daily life. It should. It's crucial. It leads me to lean on Jesus in humility. It causes me to realise I can't do life on my own, and even if I could give it a go for a while, I don't want to, because it's a pointless waste of energy and time. The healing that I need, I am more and more convinced, is a healing of the heart, of my mind, of my perspective. I long to have a right sense of my own identity and importance, and to respected and honour God, as I seek to respect and honour others.

So, yes, I do need healing. As someone said to me recently, Jesus willingly allowed himself to be demeaned, slandered, hurt, criticised, insulted, even killed and, even as He (humanly) must have been frustrated and crushed in His disappointment, prayed "Father, forgive them. They don't know what they're doing." The gentlemen with whom I had my brief encounter has no idea what he has done or continues to do to me. He probably thinks he's doing a good thing, following a teaching, being obedient to God. He has no idea of the hurt and distress, questioning, and anger his actions caused me. I too, have no idea what led him to say what he said. I do know that, whether he meant for my physical body to be healed or not (I strongly suspect he did, but want to give him the benefit of any doubt) there's much in me that would benefit from being different or changed: character, temperament, behaviour, language, sense of humour (!) and so on. I need to be humble and keep coming back to God with those things and parts of my life.

At the same time, I need you, friends, brothers and sisters, to help me out. We're all people. We all have strengths and weaknesses, and as I said above, I personally believe we all have a need. We all have the same need, whether our bodies are good, bad or indifferent. It remains the same whether you are a PhD toting MENSA member, or whatever the opposite of that is. It remains the same whether you have a Masters (or even an MTh!!!) in Theology, or the extent of your theological education and knowledge is thinking "this life is a bit crap, there must be more than this." Whoever you are and whatever you're doing with your life, we're called to life, to love, to hope, and to freedom, because of the God-man Jesus Christ. We need to come to him and ask, and receive, the life that he offers to us, afresh everyday. I honestly, truly believe, and not just because of pigheadedness or unwillingness to change, that to limit the view we have of what God wants to do with us to some kind of higher state of humanity where all the guys end up like George Clooney in his mid ER period, and all the ladies can strut their stuff like Angelina Jolie, but that in both cases we're also much more pious and Biblically literate, is just hogwash. But so many of our Churches look like they are aiming for this. Why is that?

Jesus, when he was resurrected, was recognisable by his wounds. They weren't shameful, they were signs of victory, of a war won once and for all. I'm proud of my weaknesses, the physical ones, and the ones you can't see. I rejoice in them, because they show me that I am real, I am alive, that I have experienced life, the way God intends me to experience it, warts and all. 

So yes, I do need healing. So do you. But I don't need healing in the way you think I do. Nor do you, my friend, necessarily need healing in the obvious ways that I can see. We need to relate to ourselves, to God, to one another, and come in humility to the grateful place of receiving whatever God has for us because, and I am certain of this, it'll be much better than any plan I can come up with for how I'm going to make my life better.

Please stop pretending I'm not human. 

To be human is an enormous, wonderful privilege and blessing, as well as a responsibility. It is to identify with God. God loved humans so much, He became one and came and lived among us, just so we could have a common experience and share in the wonder of it together. The fact that I am alive and breathing today is fantastic in itself. Jesus breathed in the same way that you and I do. He struggled in the same way that you and I do. He felt pain, loss, joy, elation, sorrow, excitement, the whole nine yards. He was also probably quite short, and not much to look at (check the gospels) and virtually everyone he ever spoke to misunderstood what he was doing, what he was about, and what the outcome of it all would be. He could have done anything he wanted to, but he loved humans so much, he let them make mistake after mistake after mistake in how they dealt with him, just so that they, and we, might have our own opportunity to see him as he really is, and respond to him. I don't need to walk to be human. You don't need to be a brainbox, or musical, or have people validate you by buying your CD, your book or anything else. We could all do with understanding the stupendous blessing and opportunity we have and pray that the whole world, not just those that look "broken" or "sick" might be healed, so that we can all enjoy it together.

Even as I finish this, I'm a bit nervous to post it. Some of you are Christians. A lot of you aren't, and may think this is all a bit silly, or ill-advised, or downright dangerous. I'm also a bit nervous because my theology isn't all neat and smooth-edged. I'm probably not exegeting correctly in parts. My hermeneutics are very suspicious, and I'm being entirely postmodern in a) thinking that anyone should give a monkeys (I nearly wrote something else there) about this, or b) that my opinion matters. But even so, this is honestly how I feel today, and I'm fed up of feeling like this.

As I've been writing and thinking about this, I've been really struck by a song from the new album from The Ember Days, Face inthe Dark. The chorus says,

You healed the lepers when they called your name
You healed the broken
Will you heal me?

Now, Janell and Jason are acquaintances of mine. Their band is awesome, and I have a pretty good idea about the circumstances which led to this song, which give a huge amount of added poignancy to these words, which would otherwise seem pretty simple. Later, Janell sings

Take what's broken
Heal the pain
Take my heart
Have your way

What's broken in me? Is it my lack of ability to walk? I don't think so (you might have guessed that by now). 

So let's do a deal ok? Next time you walk past me in the street, if you feel led to pray for me to be healed, think again. If you still feel the need to pray for me to be healed, be ready for me to do the same to you, and be aware that I'm asking for a lot more than just to be able to walk when I pray for my own healing, and for yours. New life, transformation of character, personality, behaviour, situation. Let's go for that instead shall we? I think God's a lot more bothered about that. He's already raised the dead, so re-instating my dead brain cells probably isn't that big a deal anyway. What He really wants is for both you and I to understand more of who he is, who we are, and the wonder of what life together, and with him looks like. You can't do that while you're walking away from me in the opposite direction.

Walking's for losers anyway.

(If you're tagged, it's because I thought you might beinterested, not because I think the kind of behaviour described above is likely to be something that you would do!)

Wednesday, 3 April 2013

Sleep Deprivation

A rare moment of sleep...
I remember what sleep used to be like.  In fact, I was quite a fan of it.  It wasn't unusual as a single girl for me to stay up until the wee hours of the morning and then lie in bed snoozing most of the day.  Occasionally, I would transfer myself from bed to the settee to veg in front of the TV and snooze some more - accompanied by the ever present and unobjecting cat of course.  All of this seems like such a fond memory now....rather utopian in fact...

Before becoming a mother, I had of course heard that sleep would be in short supply and I knew that as a newborn, I would be getting up with him multiple times a night.  Of course, in the early days, I didn't actually *have* to get up because the Neonatal Nurses did it for me, but based on my passionate commitment to offer Adam breastmilk, I got up to express anyway.  Once Adam was discharged from hospital, the reality kicked in as we were indeed up with him multiple times a night - every two hours at first.  

But here's the thing - I did actually expect there would be a point when I would be able to sleep again.  A point when the sheer exhaustion would ease because he learned how to sleep through the night.  I didn't know when this would start happening, but I sort of figured it might get better around six months or so as he started to eat solid food and so the calories would last him through the night.


First came the suggestion that because of his colic, Adam might wake up more at night.  Next was the suggestion that darkness was equal to sensory deprivation because with limited or distorted hearing, losing sight in the darkness means losing any sensory clues to indicate relative safety.  So where children with full senses can wake in the night and feel soothed by the presence of ordinary household sounds, or even a parent's voice, this would not be an easy option for Adam.  Despite our certainty that he does have some hearing, we've never been able to soothe him at night by voice alone and are still not able to do so.  After this, as it became clear that weaning and eating would not be an easy pathway for him, based on what was later named as a Behavioural Eating Disorder and still later with the suggestion of Silent Reflux added, filling up easily on calories during the day to sustain him at night did not come easily.  Then, as breathing problems and regular bronchial infections made it harder both to breathe and to lie down at night without constant coughing, his inability to sleep through the night was given another explanation.

Now, as Adam has turned two, his sleep pattern is still influenced by a combination of all of these things.  In other words, it is perfectly normal for Adam to wake up as a bare minimum twice a night - it is far, far more common for him to wake up anywhere between four to eight times a night.  Sometimes, these wakeful moments can be quickly soothed by offering him Dumbles and a soothing stroke of his head until he resettles.  Sometimes, he needs to be picked up and cuddled for anywhere from a few minutes to a few hours before he can sleep again.  Sometimes, he needs medication - typically inhalers to ease his breathing - along with soothing before being able to sleep again.  

Sometimes - like this past Sunday night - Adam can't sleep at all because lying down to sleep means coughing until he vomits.  So, while both Chris and I went to bed at 10pm, we got up with him as he coughed and choked at 11:30.  We both stayed up with him until 2am at which point, I took him downstairs to lie on my lap in a sitting position but cuddling in hopes he would be able to sleep while Chris went back to bed.  The only way to soothe him was through watching his favourite films (The Gruffalo and The Gruffalo's Child) twice each before he could even doze.  This took us to 3am when I tried to take him back up to his cot (currently once again back in our room for his own safety) but by 3:30 he was coughing again and by 4am I was back downstairs with him until 7:30am when Chris woke up and I went to bed for two hours before getting up again.  

All of this to say, that now Adam is two, my vague notions of sleeping through the night by six months seems a very distant - and almost laughable - memory.  And my hopes for being able to sleep through the night at any point in the near future seems equally unlikely.  Exhaustion is now far more familiar to me now than feeling rested.  Despite this, I have realised that I am actually far stronger than I ever used to believe because even without any pattern of regular sleep, I'm still working, studying and far more importantly, taking care of Adam.  I'm honestly not sure if something has changed in me because being a mother (and mother of a disabled child at that) awakens that coping instinct which just forces me to keep going or whether or not I was always capable of dealing with less sleep than I thought.  It certainly means I have a constant intravenous caffeine infusion running and am more than likely keeping Taylor and Harrogate in business!  All of that said that of course I wouldn't turn the clock back because regaining that blissful state of sleep would also mean not having Adam so it is worth it...well at times it feels more worth it than really, it is worth it.  


Oh how I miss eight - or ten - hours of sleep...