Hemiplegia Awareness Week 12-16 October 2015

12042687_178723065796086_4912301099044043762_nHemiplegia is a form of cerebral palsy caused by damage to the brain usually before or around the time of birth, but sometimes as the result of brain trauma later in childhood or even adulthood. The effects are like a stroke, with a lack of control and weakness down one side of the body – the opposite half to the injured side of the brain. One to two babies are born with hemiplegia every day in the UK and many more acquire the condition later in childhood following a stroke, head trauma, or a viral infection such as meningitis.

But it is not just physical development that may be affected. In fact, most children have additional diagnoses such as epilepsy, visual impairment, speech difficulties, perceptual problems, learning difficulties, emotional and behavioural issues. While these effects may be harder to see, they are often more significant to people with hemiplegia and can impact on confidence, education, employment, friendships and relationships.

Some of you know that my ten-year-old son, Wee Chum, experiences hemiplegia as the result of a near-fatal accident when he was ten weeks old. I won’t go into the details of the accident, as it is distressing for all involved, but what cannot be denied is the effect it has had, and will continue to have, upon his life.

Wee Chum likes video games and playing football, drawing and colouring, and running around the park with other children. He is interesting, insightful, thoughtful and kind, hilarious, feisty and argumentative. He is generally a well-behaved lad, but of course he has his moments where he is a complete pain in the neck. In short, he is just like any other ten-year-old. The only difference between Wee Chum and any other child his age, is the fact that he has hemiplegia.

There are things he finds difficult, of course there are. He faces challenges in his life that non-disabled people wouldn’t even consider when going about their days. He needs help with things that the average ten-year-old would find second nature – tying shoelaces, buttoning jeans and shirts, zipping up coats, for example – and many other things, too many to list here. But he is persistent and innovative, and constantly amazes me with new ways he’s come up with of doing things that just the previous day he had declared ‘impossible’.

I’m telling you this because I want you to know that disabled children are so much more than their disability. Wee Chum doesn’t go about the world as a disabled child, he operates within the world as a child, and most of the time he doesn’t even think about his ‘issues’. He just gets on with it. We had a conversation a few months ago in which he said something so poignant it made me want to cry; “I’m not really different, am I? I’m just like everyone else. I just do lots of things differently to other people – but I still do them, and that’s what’s important.”

I’m also telling you this because there are so many children in the UK and worldwide who experience hemiplegia, for some of whom the effect is far more profound. So I wanted to tell you about HemiHelp. HemiHelp is the UK’s national charity for hemiplegia. The charity’s aim is to support children and young adults with hemiplegia and their families, ensure they are afforded the same opportunities as their non-disabled peers and help them to live life to the full. HemiHelp provides information, supports and runs events for children with hemiplegia and their families, as well as for professionals (medical and educational) involved in their care.

For more information about HemiHelp or to find out more about hemiplegia please visit the charity’s website. If you know me personally, I will have awareness wristbands available for sale in order to raise much-needed funds for them, to support the amazing work they do with children with hemiplegia. If you aren’t local to me, here are some other ways in which you can support this valuable organisation.

If you take nothing else away from this post, even if you forget all about me, and Wee Chum, and what hemiplegia is, please remember my son’s words. He is not his disability. He is not a ‘poor, disabled kid’. He’s a human being in his own right, with the same social rights and duties, with just as much to offer this world as any other human being. Disabled children will grow up to be tomorrow’s disabled adults – adults who contribute to society in their own unique ways, just like the rest of us.

The Jenga approach to life

2015-10-11 09.46.11The working title for this post was ‘An important life lesson, as taught to me by my ten-year-old son, through the medium of Jenga.

This morning I walked past Wee Chum’s open bedroom door, and he called out to me: “Hey, Mum! Come and look at what I’m building!” Taking that as an invitation to enter his room (we have an always-knock-and-wait policy for both bedrooms, ours and his), I ventured in to find him painstakingly stacking Jenga blocks high, in a pattern which he had obviously carefully thought through.

“Wow,” I said, as he picked up another little wooden block and carefully – oh, so carefully – placed it vertically on top of the already-wobbling tower. “You’re very good at this,” I observed, “if I was doing that they’d all have fallen down by now.” “Yeah, I know!” replied Chum, ever humble, “I’m really, really good at building Jenga towers.”

I thought about what he was doing for a minute; all the effort he was putting in to something so transient and ephemeral as a tower of blocks that would, eventually, be knocked down by a wandering cat or a wayward dressing-gown hem. If I had put so much time, consideration and concentration into something like that, I would want to know that it was permanent. I don’t believe for one second that I’m alone in this; most of us, I think, strive for permanence when it comes to things we have worked hard upon. The sheer pointlessness of the exercise dawned upon me, and I cringed inwardly at the thought of the tears that would fall down his cheeks when the inevitable happened and his labour of love came toppling down with a crash.

“So, um…” I began, “What happens if it falls down?”

“Oh, they always fall down, Mum.” Wee Chum spoke with the easy air of a demolition expert who’d seen a thousand buildings obliterated. “It doesn’t matter. I’ll just build it again. I’ll build it better.”

I said, “Oh.” It was all I could think of to say. In that moment I suddenly realised that I’ve always considered my primary role as a parent, other than loving (which goes without saying), is teaching – and yet here I was, the one being taught. I was being shown the importance of accepting impermanence by my ten-year-old son. Sometimes, even something you wish could be perpetual can only ever be fleeting – and if we can accept that, then we can truly enjoy the act of building with the determination to know that, if it all collapses around our ears, we will simply build it again. We’ll build it better.

Fifteen minutes later, I heard a crash and a little voice say, with satisfaction, “There it goes!” And then, there was the unmistakeable sound of someone scooping up armfuls of Jenga blocks, ready to build once again.

World Mental Health Day 2015

“Saturday 10 October is World Mental Health Day, hosted by the World Federation of Mental Health. To help mark the occasion, we’re raising awareness of what can be done to ensure that people with mental health problems can live with dignity.”
Mental Health Foundation

We all know someone who suffers from mental illness. Personally I know many people, including myself, for whom mental health is a huge issue. One in four people experiences mental ill-health at some point in their life. The charity Sane says:

“There is a wide spectrum of conditions, including anxiety, addiction, obsession, phobia, depression, bipolar disorder, personality disorder, schizophrenia or an eating disorder. These conditions can lead to profound emotions of despair and thoughts of suicide. People’s experiences can often be further complicated by alcohol or drug addiction.”

I have personal experience of the mental health system in the United Kingdom, and one thing I can tell you is that, unless you encounter a really good professional who will advocate for you, it is not a pretty sight. Even within the NHS, mental health is often ignored and swept under the carpet. At sixteen I was told by a hospital psychiatrist that I should either actually kill myself or stop wasting his time; he also made derogatory comments about my weight (for the record, I was the perfect weight for my height at the time!). At twenty-three I was told by a psychiatrist that there was absolutely nothing wrong with me. I felt like that was my last chance to get help, and that I had been dismissed. I walked home and attempted suicide.

I found myself in ‘Day Treatment’ where we were in hospital during the daytime but slept at home, presumably to save the beds for ‘properly ill people’. During Day Treatment I was treated like a child who needed to be occupied with sewing and art workshops I didn’t want to participate in. I had no choice. I ended up as an inpatient for a few days and my experience was echoed by the stories of the other patients I spoke to while I was there. We were left to stagnate. No therapies, no workshops even offered, we spent all of our time in the television rooms watching daytime TV, in the canteen getting our terrible hospital-grade food, in our rooms staring at the walls, or smoking during the ten minutes every hour we were allowed outside into the enclosed garden for some ‘fresh air’. It was a horrible experience and I couldn’t wait to get out.

The one thing I have found within the UK mental health system, until I found my absolutely wonderful psychiatrist, is that until you have actively attempted to kill yourself, nobody wants to know. A ‘triage’ nurse at the hospital called me an attention-seeker. The crisis team told me to just take my medication and go to bed – if that had been possible, surely I wouldn’t have been calling the crisis team? The crisis team told another patient I was in Day Treatment with, sternly, “I can’t understand you. Phone back when you’ve stopped crying.” The mental health system is failing mentally ill people, and there have been thousands of preventable suicides – preventable because, if these people had not slipped through the net, they might have received adequate treatment and recovered.

There is no dignity in having a mental illness. We are expected, in forms we write to claim the benefit money we need to feed ourselves with because so many of us are unable to hold down paid jobs, to pour our hearts out, to reveal the darkest thoughts we have to a complete stranger. We are grilled at assessments in order to be ‘allowed’ those benefits, as to whether we are truly mental or just ‘putting it on’ to get the pittance one receives in Employment and Support Allowance. We are treated like fakers and shirkers. We are treated as subhuman.

A radical shift is needed in the way we view mental illness. We need to stop viewing mentally ill people as dangerous or pitiful, and we need to stop assuming that a huge percentage of mentally ill people are not really unwell, but simply lazy and workshy. We need to begin to treat mentally ill people with compassion, dignity and respect. Sadly, my experience of the system, and of wider society, is that we are treated with scorn, disrespect and thoughtlessness.

If you need some help with navigating the world as a mentally unwell person or helping a mentally unwell person you know, here are some links and phone numbers you can contact.

Mind – Infoline 0300 123 3393
Sane – Saneline 0300 304 7000
Mental Health Foundation

If you are in crisis, you can contact the Samaritans on 116 123 or visit their contact page.

The Adult Privilege Checklist

I originally wrote this in 2009 when I was writing in another blog. I’m thinking about the way we speak to children today, and I thought it would be pertinent to re-post it here.

I am a firm believer in the personhood of children and that children are an oppressed group. It pains me to see so much child hate within feminism; not from all feminists of course, but there certainly is a lot of mother-blaming and child hate in some pockets of feminism. Many others have spoken eloquently and thoughtfully about this before me, so I’m not going to reiterate what they’ve said. Long story short, I believe that children’s rights are important, and that feminists in being progressive and advocating for marginalised groups of all kinds, should be invested in working for the rights of all oppressed groups – including children.

Reading a post by Elena Perez at California NOW made me think about privilege checklists (like the Male Privilege Checklist and the White Privilege Checklist, for example) and I came to the realisation that, as yet, nobody had written an adult privilege checklist. So with some help from my good friend Jenny, using some of Elena Perez’s ideas from the aforementioned post, I set about writing the Adult Privilege Checklist.

This one is a bit different from previous privilege checklists in that instead of being written from the perspective of the privileged class (the male person, the white person) it is written in the voice of the oppressed class (the child). We came to this decision because written from the adult’s perspective, intersectionality became a problem. Things like “Light switches, windows, sinks and toilets are positioned for me to be able to reach easily” are null and void when thinking about, say, an adult wheelchair user. So we changed it to “Light switches, windows, sinks and toilets are not usually positioned for someone my size to be able to reach easily.” It is our hope that, written from the child’s perspective, the list shows the ways in which children are disadvantaged compared to the majority of adults, as written from the perspective of the adult, some of these would not apply.

It is something of a work in progress, and I’m really hoping that people will chip in with their own ideas, and that this will spark more conversation about children’s oppression and respect for the personhood of children.

So without further ado:

The Adult Privilege Checklist

As a child:

  1. I am not legally allowed to vote, even though government makes decisions about me and people like me.
  2. If I need a caregiver, he or she will not be my peer.
  3. It is often considered acceptable, appropriate and even desirable for my caregiver to physically assault me if I do not please them.
    1. In many places I can legally be physically disciplined in my place of education.
    2. If I am hit, even once, by a loved one, that is not normally legally considered abuse.
    3. It is likely that I am smaller than the person assaulting me, and that I will be unable to defend myself.
    4. If I am behaving in a way others do not like (or my caregiver has decided they no longer wish to be in a certain place), it is considered acceptable to physically pick me up and forcibly remove me from the area/situation.
  4. If I am routinely yelled at, criticized, and belittled in my own home, this might not generally be recognised as abusive behaviour.
    1. My physical and emotional needs are often not treated as reasonable and important.
    2. If I am angry or upset, this is often not taken seriously and I am often condescended and patronised.
  5. I am almost always dependent on others for my economic support.
    1. I do not get to make choices about family finances, when to spend money and on what.
    2. If I am allowed to earn money at all, it will be at a lower rate than adults doing exactly the same work.
  6. I am routinely ignored or told to be quiet.
    1. If I am the only child in a group of people, I will often be shut out of the conversation or patronised.
    2. It is considered acceptable to talk over me or to interrupt me while I am speaking.
  7. When I display age-appropriate behaviour, other people find it unacceptable.
    1. I cannot be ‘noisier/more active than average’ in a public place without people questioning my right to be in that place.
    2. If I am ‘noisier/more active than average’ in a public place I risk myself and my caregiver being thrown out.
  8. I cannot speak in public to a group of people without putting people my age on trial.
  9. I do not have free choice with my language. If I use ‘unacceptable’ words I will often be punished.
  10. If I am suffering from mental health problems, I am often dismissed and have them put down to my age.
  11. Adults often feel they have the right to harass me.
    1. Adults feel it is their right to talk to me even after I make it clear I do not wish to talk to them.
    2. Adults feel it is their right to touch me (tousle my hair, pinch my cheek) without my permission.
  12. Society and the media often portray people like me in a negative light.
    1. The media often describes people like me as lazy, ignorant or criminal.
  13. People often make decisions on my behalf and tell me that they know better than I do what is best for me.
  14. The world is not generally sized to fit me:
    1. I am not usually able to find a seat which is made for somebody my size.
    2. Light switches, windows, sinks and toilets are not usually positioned for someone my size to be able to reach easily.
    3. I cannot be certain that I will be able to lock the door to my bathroom stall or reach the toilet paper once I’m sitting down.
    4. It is very possible that I might find myself trapped somewhere that I cannot leave without assistance.
    5. Silverware, plates, and glasses will usually not be sized to fit my hands.
  15. When eating out, or at a film, the wait time will probably not feel reasonable to me, and if I eat as I would at home I might attract stares and rude comments.
    1. If my wait time for food or entertainment feels unreasonable, and I complain, people will generally not be understanding and apologetic.
    2. I can’t talk with my mouth full without people putting this down to my age.
  16. I might not understand the unspoken rules of interacting in public spaces, they might not feel natural to me, and might not be able to follow them without causing myself distress.
  17. I may not be able to speak my native language with fluency and am often not understood by other native speakers.
    1. It is considered acceptable for another speaker of my native language to laugh at me for my language choices, or inability to express myself.
  18. I am not usually given a choice about my place of education (or whether to participate in education). If I am sent to school I am legally expected to attend, whether it is my choice or not. If I am home educated I might not be given the choice to go to school if I so wish.
    1. If I am late to my place of education I will probably be reprimanded, even if this is the fault of my adult caregiver.
    2. I am almost never permitted to choose my educational curriculum, materials, or pace.
    3. My educational evaluations will often be based on circumstances entirely outside my control–the actions of other students, or of my caregivers, or the learning materials available to me.
  19. If I am feeling ill, I might not be able to adequately express this to my caregiver. If I can, I might not be taken seriously or treated properly.
    1. If I need to see a health professional, I am reliant upon my caregiver to arrange this for me.
    2. Medical professionals often ignore me entirely, choosing instead to speak to my caregiver only about my needs.
    3. I am not able to make my own medical decisions. The right to make these decisions belongs to other people entirely (usually my adult caregivers).
    4. In some places, if I require an abortion, my adult caregivers must be notified, which can sometimes place me in great danger.
  20. I might not be able to attend to my bodily needs (housing, food, water, toileting, health needs, taking myself to bed) without relying on someone else to assist me.
    1. I am often forced to eat foods I do not like.
    2. People might advocate force-feeding me, and this is not often seen as abusive.
    3. My bedtime is set (often arbitrarily) by my caregiver, and I often do not have input on this.
    4. I have no choice about my living space – the house I live in, its decoration, the arrangement of furniture etc.
    5. I often have no choice about my outward appearance – haircuts, clothing etc.
  21. I am usually not given a choice about which religion to follow.
  22. If I wish to spend time with other people, I need the permission and sometimes the assistance of my caregiver to arrange this.
    1. If I do not wish to spend time with a certain person or people, I am not usually given the choice to avoid them.
  23. My sexual development is often not explained to me and sometimes actively discouraged.
    1. If my sexuality/gender identity is not cis and straight, I can expect to be told it’s “wrong,” and efforts will be made to change it. Use of force is considered acceptable in this situation.
    2. It is considered unacceptable for me to enjoy my sexuality.
  24. My belongings can be taken from me (often by my adult caregiver) and this is not viewed as theft.
  25. If I am in public unescorted by an adult, random adults may demand to escort me, and restrict my movements; this is considered acceptable, regardless of my own opinions or those of my legal caregiver.
  26. I am limited in what films I may see alone, regardless of my opinions or those of my caregiver.
  27. It is considered acceptable or even “prudent” for me to be discriminated against and regarded with suspicion when patronising a store or other establishment.
    1. It is often considered acceptable to force me to submit my belongings to a search before/after/during my visit to a store or other establishment.

If you found this privilege checklist interesting, you might be interested in the following (and if you know of other privilege checklists that should be included here, do let me know!):

Oh, silly me. I forgot us disabled people aren’t allowed to have a good time.

I just came across this tweet from @SunderlandEcho.

I’m disabled. I am a claimant of disability-related benefits and I have a Blue Badge. I also go to concerts and smile, raise my arms and have a ‘good time’. I do these things if I’m having one of my rare ‘good days’ and it knocks me flat on my backside for several days to a week afterwards. I am enraged that the Sunderland Echo chose to run this story with this particular headline. The underlying story may well be true – she may well have committed fraud. But a few photographs of a disabled person behaving like a non-disabled person does not equal evidence of ‘faking disability’. All this sort of story does is leave disabled people petrified of leaving the house, let alone doing anything which looks like they’re ‘having a good time’, lest they have their photograph taken and lose their income (at best) or end up in prison (at worst).

What the Sunderland Echo are doing here is perpetuating the myth that disabled people ought to stay at home being miserable about the shitty lot they’ve been dealt in life, rather than getting out there and participating in society to the best of their abilities. It perpetuates hatred of disabled people for ‘getting thousands in benefits’ when we’re clearly having too much fun to be genuinely disabled. This perpetuates a culture of ableism, and hate crimes against disabled people, and frankly I’m sick of being told how I ought to behave simply because my mind and body are different to other people’s.