Hurricane Harvey has grim disaster planning lessons for disabled people, by @PhilippaWrites

Cross-posted from: Philippa Willitts
Originally published: 01.09.17

 

Hurricane Harvey has been at the top of the news all around the world this week. The devastation seen in Texas has left homes underwater and people wading down streets with their entire lives contained in a black plastic bag. On the other side of the world, floods in India, Nepal and Bangladesh have killed 1,200 people, leaving millions homeless and destitute.

For anybody caught up in a natural disaster or crisis, the consequences are huge. Leaving and losing your home, not knowing where you can get hold of safe food, and wondering when – or whether – things will ever be ‘normal’ again must be absolutely overwhelming.

Then, as with many horrific situations, those who are less privileged in day-to-day life will also find themselves in more dire straits during the crisis. The risk is intensified for each intersection of oppression a person experiences. …

 

You can find the full article here.

Incurable HippieMad, disabled, feminist, radical, angry, lesbian, pacifist, warrior, geek, flower-power chick… About hippie blog? Somewhat neglected but still well loved. Bits and bobs from a British glasses-wearing, sweary, fat, disabled, atheist ex-Catholic, anti-capitalist, pacifist feminist lesbian with eclectic tastes. (@PhilippaWrites)

 

When The Cake Is Never Shared: Liberals and Their Passive Aggressive Victim-Blaming

Cross-posted from: Life in the Patriarchal Mix
Originally published: 01.04.15

As I have mentioned in a previous post, the hatred towards mothers always seems to go unchecked and is always the norm. Whenever a mother shows any concern of the impact of sexualization of women on her children she is immediately branded a “prude” or someone with “no life.” It’s incredibly ironic that many will accuse a mother of “having no life” because the minute she does not center her life around her children she is also branded a horrible mother.

Likewise, they will find ways to accuse her of hypocrisy, or imply hypocrisy, by asking her if she allows her children to watch any television. I am not certain about how exactly that is relevant to her concern because the difference between media consumption in the home versus public advertising is that she at least has some control over the media her children consume but out in public she does not have this power. You cannot simply “ignore” a hyper-sexualized advertisement when it is a fifty foot billboard in full view of the young impressionable children. Liberals may deny this, and most certainly will, but children do notice their outer environment, they do not live in a bubble (as much as Liberals would love to make it so) and they do take in everything that they see around them. They cannot ignore that it actually does take a village to raise a child and our mainstream media is part of our global village. The accusations of moralistic pearl-clutching against Jennifer Campbell is absurd and the other arguments against her very legitimate concern are also astoundingly ridiculous.
Read more When The Cake Is Never Shared: Liberals and Their Passive Aggressive Victim-Blaming

I apologise for my disability by @MurderOfGoths

(Cross-posted with permission from Murder of the Goths)

I am writing this to apologise, to apologise sincerely, for all inconvenience/confusion caused by my disability. It is obviously very selfish of me to have not taken other people’s feelings into consideration when deciding to become disabled. I should have chosen a different disability – something more straightforward, something more convenient. I apologise wholeheartedly.

This sounds ludicrous right? Who on earth would think of disability in these terms? You’d be surprised.

I’ve written before about some of the difficulties I face with my disability. This post is about the reactions I get to it, while I covered the disbelief as little in the last post, I wanted to say more on it.

What prompted this is my dealings with the local council, at the moment I’m living in a first floor council flat, there’s no lift, just stairs. Obviously this is difficult for me, and so we got a medical note from my doctor and were awarded points towards moving and it was noted that I needed ground floor access. As it is I can’t get my two children in and out of the flat without assistance, and if I had to get them both into the flat on my own I’d have to take a break after getting one up the stairs before attempting to go back down and get the other. They are both under 3 years old, I really cannot leave one at the entrance alone. I’d then have to rest again before making another trip for any bags. I struggle to bring shopping in, or take rubbish out. I’m lucky that I have a husband to do a lot of those things, but it’s not fair on him, nor is it practical for him to always be there to do these things. On top of that, I would quite like to have someindependence instead of being totally reliant on someone else. Here’s where the problems come in, while I have these issues with the flat, I can use stairs. According to the council it’s not possible to be able to use stairs but still have problems in a first floor flat. And so they’ve decided on my behalf that I cannot move into a house with internal stairs, despite the fact that internal stairs are not as much as a problem as entrance stairs for me. They cannot differentiate.

It seems my disability is far too confusing for them, it doesn’t fit into a nice neat box, I can’t just tick a box saying yes or no when asked about abilities.

Can I walk? Yes, but only for short distances/with painkillers/with assistance/on good days/if I’m not carrying anything.

Can I stand? Yes, but only for a short time/with painkillers/with assistance/on good days/if I’m not carrying anything.

Can I dress myself? Yes, but I need assistance with certain items/on good days/with painkillers.

Can I prepare food? Yes, but only if it doesn’t take long/if I can sit/with assistance/on good days/with painkillers.

Can I …..? Yes, but….. .

And so on.

Unfortunately this ability to sometimes do things causes endless confusion and seems to irritate some people. Whether it’s because they cannot put me into a box, or because it inconveniences them.

I know some people will see me do something one day, then be annoyed when I can’t do it on another day. Rather than accepting that my disability is erratic and unpredictable they choose to see it as me being untrustworthy.

Some people also seem to get upset when faced with me still being able to do positive things, for example, having children. As I am disabled I am expected to forego these wonderful experiences, just because some people will not accept that I can be (at the same time) capable of looking after children but unable to do other things. I seem to be expected to sit around being sad and not do anything at all, anything short of that and I am a fake, a fraud, a cheat. I’ve even been accused of lying about my disability because I can type!

You’d think the worst thing about being disabled would be the actual disability, but it’s not for me, the worst is other people. I am always either so disabled that I mess up their plans, not disabled enough that I defy their image of disability, or too much of a mix of both that I make them doubt me. So I apologise. I’m sorry that my totally uncontrollable disability which causes me pain day in and day out is such a nuisance to your life.

 

Murder of the GothsA personal blog covering all sorts of topics that affect my life. Whether it’s parenting, disability, geeky stuff, feminism, paganism or (of course) goth subjects. Twitter: @MurderOfGoths

I haven’t always been like this by @MurderOfGoths

(Cross-posted with permission from Murder of Goths)

I haven’t always been like this

by MurderOfGoths

There seems to be this idea in the media – and suggested by this government – that those with disabilities have never been “hard working tax payers”, that we’ve always been disabled. I guess I get why they do this, for one it means we look like a massive drain on the system, for another it keeps people safe from the thought that they might end up like us. It could happen to anyone, at any time. You can try and insure against it, but you cannot guarantee that you will never be disabled and reliant on others.

I know, it happened to me.

One day I woke up, at the grand old age of 24, and I couldn’t move. My upper back was one big mass of pain. And that’s it, suddenly my life was turned upside down. There was no sign it was going to happen, before that I was a normal 24 year old, doing normal things, from that day on I was trapped in my own body.

Since then I’ve been sent for x-rays, an MRI, to physios, to blood tests.. you name it. Everyone agrees that my back isn’t right, there are visible and tactile signs of problems, but no one knows why. And because they don’t know why they cannot fix it, just treat the symptoms. Six years on I am coming to the realisation that it may never get better.

The following is something I wrote after a year of back pain.

Let’s try an experiment.

First of all pick up a 2 litre bottle of drink. Done it? Good, you’re doing better than me.

Now fold your arms across your chest so your hands are on opposite shoulders. Now lift your arms up. Can you hold them at a 90′ angle to your body? I can’t, I’m lucky if I manage 45′

Same position again. Turn your upper body to the left and then to the right, keeping your hips still. Did you manage to turn more than 30′ either way? Well done, you beat me there too. On a good day I can manage 30′, more often than not I mange 10′ maximum.

Still staying with the same position now I want you to lean left then right. If you manage any movement this way then well done, you’ve beaten me again.

Sensing a theme?

Let’s try some more. Lean down as if you were picking something up, any shooting pains? Nope? Guess what?

Now try reaching up to put something on a shelf. Make it a shelf above shoulder height. Well done, looks like you are winning this doesn’t it?

Now for some really fun stuff. Put a t-shirt on. Do you feel agonising pain as you pull it over your head? No? Just me then?

How about walking up stairs? Does that make your spine feel like it’s stuck in a vice? What a surprise.

How’s your chair? Comfy? Does sitting upright hurt you? No?
How about standing? Does it feel like you are balancing a 10 ton weight on your shoulders?
Does your spine feel like it’s solid rock?

Get a friend to help you here, ask them to put (gentle) pressure on your spine between your shoulder blades, does it move slightly under pressure? More than mine does!

Now a final fun quiz for you. List for me all the activities you can think of that don’t include;
– sitting
– standing
– walking
– bending
– lifting
– twisting
– leaning
– carrying

Oh and a final one, lying down not on your back!

Then imagine that being your everyday life.

Some days you’ll get so sick of it that you’ll go against your (and your partner’s) better judgement and do those things. Maybe you are out with family or friends, and you are aware that all you ever seem to talk about is your back, so you don’t want to say how it feels. Anyway, you figure it’s a good day, you’ve actually got out of bed without assistance that morning!

The next day you’ll regret it, and the next, and most likely the next few as well. But you wont say because then it sounds like you are blaming people for making you do things, when you know you should have said no. Instead you take note of this and when you know you have plans you spend days beforehand doing as little as possible, so that there is less chance of it being a bad day. Mostly it works. Mostly you get away with it for that one day. And no one is there to see the fallout after.

Problem is, this backfires, because then no one sees your bad days. They see you able to stand and walk and all the rest, though no one watches how little you can twist or bend and you hide the grimaces when your back twitches, sending fresh pain down your spine. Because that would make you less fun to spend time with.

So when you tell them you are having a bad day they honestly expect you to push through the pain. Or they suggest you might be exaggerating it. And you have no way to prove otherwise. It’s an invisible and crippling, and what’s more it’s undiagnosed so you don’t know if it will heal or how long it’ll take.

I haven’t run anywhere in over 9 months. I have done no exercise in over 9 months. I have no freedom any more. At the grand old age of 25 I’m a prisoner in my own body, but it’s ok, so many people have told me I can do more than I think. They must be right, they’ve obviously done all the experiments above and decided that everyday life will be so damn easy.

As you can tell, over the years I’ve faced a lot of disbelief over the amount I can do, and the amount of pain I’m in. It’s the curse of having an invisible and inconsistent disability, it does make me angry, and it aggravates my depression. I’ve been told that it’s all in my head, that losing weight will help, or that exercise will help. While the latter two make some sense, I can see how that conclusion has been reached, they actually don’t help and are actually putting the cart before the horse. When my back problems started I was a slim size 10 who exercised frequently. I am now much bigger than a size 10 and never exercise because of my back.

My back pain now dictates every part of my life, whether I like it or not. I cannot get a break from it, and every decision I make has to take in to account my limitations. Sometimes I forget and overdo it. Sometimes I get fed up of living like this and ignore the pain – push through it – I always regret it.

There are two very good posts that are relevant if you know someone with a chronic pain condition, very useful to keep in mind. One is this list of Tips for Dealing with People in Pain, and the other is this wonderful explanation ofSpoon Theory, while the latter is written by someone with CFS/ME it is still very relevant to chronic pain.

I would give anything to not feel like this. My son is a toddler now and I’d love to be able to lift him, run after him, etc. But I can’t and it breaks my heart. Being disabled is not easy, I wouldn’t wish it on anyone.

 

Murder of the GothsA personal blog covering all sorts of topics that affect my life. Whether it’s parenting, disability, geeky stuff, feminism, paganism or (of course) goth subjects. Twitter: @MurderOfGoths

The Cobblestone Path – raising a child with a disability

 

What does it mean to raise a child with special needs?

 

The short answer is that it is a lot of hard work. But you knew that already anyway. For me, it has involved a lot of soul searching, career plans that have had to change, aspirations forgotten. Let’s not beat about the bush. We all know that in the vast majority of cases the onus is on the mother to change her life and take on responsibilities of caring for children, and in the case of special needs, doubly so.

You may think that I am fortunate in that the nature of my work means that I can work from home. However, in reality, it is next to impossible to work while caring for my son. I spent the first three years of his life taking him to appointments, to physiotherapy, to occupational therapy, to see the paediatric psychiatrist, to see the neurologist, to the mental health centre, and so on. I took advice from the physiotherapist and performed the exercises with my son myself every day. It was a lot of hard work, and it affected me physically as well as mentally. I started to lose a lot of weight, and people would congratulate me and ask me if I had been on a diet and what my secret was – something which I found quite ridiculous, as I was already thin to begin with, and losing weight was starting to make me look ill. What does this say about our society, I wondered at times, that here I am showing the signs of the strain taking its toll and affecting my health, and all people can do is comment on how nice it is for me to get even thinner! It isn’t nice, and it made me worry about my own health too, on top of all the worry about my son!

Perhaps you are wondering where my son’s father is in all of this. Well, he was there. But he went out to work every day, and caring for my son, doing his physiotherapy, was not something that could just wait until the evenings. Of necessity, I did the lion’s share. I thought deeply about this. Was this unfeminist of me? Should I have tried to arrange our lives differently to give my husband a greater share of the care work, and myself more chance at employment? No, I concluded, it was simply the best arrangement for us. Simple biology decided matters in the beginning: my husband could not breastfeed the children. Far better for me to take the time I needed with them, and for him to enable that by continuing to work as normal.

So what about now? My youngest son – I have two other children who do not have any special needs – has now started school. You might think that this is an opportunity for me to breathe a sigh of relief and relax a bit. You would be wrong. The first few months presented a constant string of problems – dealing with special needs in a school environment is not a simple matter, even when the child is enrolled in a special integration unit. I went back and forth from the school, I took in things from home to help my son settle in, I donated books and toys to the integration unit, I made suggestions to the teacher, who clearly didn’t know what to do with my son. I took him to educational assessment committees, to specialists, and at every turn I had to hear that I was making a mistake, that I did not have my son’s best interests at heart, that I was doing it all wrong. I researched matters myself and went against the advice of the professionals to do what I thought best for my son, both in his daily life at home and with regards to his education.

Not once has anyone suggested to my husband that he is doing it wrong. Not once has he been told that he is making a mistake. In fact, on one occasion, when we went to the educational assessment committee, the chairperson turned to my husband, after I had explained our position, and said, right in front of me: “Do you really agree with her on this? Perhaps you see it differently?” I had already made it clear when I was speaking that we had agreed on those points together. Conversely, when my husband did the talking, no one questioned what he had to say.

So, I have told you about the hard work and the appointments, the insults from professionals who are supposed to be helping you. But that is not all life is when bringing up a child with special needs. It is also about laughing and having fun with my son, about playing with him, teaching him nursery rhymes, singing songs to him, all the normal things you do with your children. He may have special needs, but he is still just a little boy who wants to play! I may never see him write his own name, or even hear him say it, but he has a beautiful smile that melts my heart, his infectious giggle makes me laugh too, and seeing him wave his arms in time to music, especially after all the physiotherapy that has got him to this stage, brings tears to my eyes. He plays pretend games and likes to throw a ball or play on a swing, laughing away as he swings to and fro.

That is why I call it a cobblestone path – it is a bumpy ride, but the road goes on, we are not standing still.

I don’t deny that it is hard work. I will not claim that it is all plain sailing. But it has its rewards, and I do not begrudge a moment of it.

 

The Cobblestone Path

The fiddler takes a bow before performing,

She dances onto the cobbles,

Drawing the bow lightly over the strings.

She flits from pebble to pebble, playing gently.

A soft melody hums in our ears and we lean towards it.

With quick strokes, the fiddler plays a discordant sound,

But we are strangely drawn in,

Onto the unsure footing of the cobbles.

The music beckons us with its unevenness,

We follow it over the rough stones.

The fiddler plays faster now, a wildness to her tune,

And dances over the stones before us,

Leading us ever forward,

To tantalising promises of more,

Sounds of sweet music ringing in our ears,

While we stumble on the cobbles in her wake.

The Invisibility of Disability by @LUBottom

(Cross-posted from Bottomface)

The metric expansion of space dictates that two distant parts of the universe move away from each other. Out in the ether the universe has been growing since the big bang. I often think about this- how in this huge scale of things the entire scale of space is increasing, yet my mind often juxtaposes this with the contraction of my life so that I feel I’m moving in the opposite direction. At first my world shrank when friends stopped calling after I had to repeatedly cancel plans to go somewhere as I felt too unwell. Then came the next contraction when I found myself contained within my small home. Then another shift and my world became my 10’ by 12’ bedroom, and after that the bed. I still have the occasional good days when I can potter in the garden or spend half an hour in the kitchen, but for the most part my world is my bed- I even do light gardening: potting, seeding etc. from the confines of my mattress. I live vicariously through mind numbing TV show after mind numbing TV show and my brain, like my body, feels as if it’s slowing down, contracting.

But I’m lucky. I have a family. Every day I have someone to talk to. I even have a couple of good friends who still make the effort to see me and an online community to talk to whenever I have the energy. There are thousands of people with disabilities in this country who would do anything to have the little that I do. They are invisible. Society can’t see them so they are easy to ignore. Their days are spent in aching loneliness. When you are that alone life can feel like it is simply a long wait for death.

Austerity is another example of contraction within this expanding universe. Social services budgets are contracting, the parameters of those they can offer support to move inwards all of the time. Many third sector organisations and community outreach programmes are also feeling the strain so that many of them can no longer afford to even train volunteers. David Cameron’s big society is a failure. So what becomes of these forgotten people?

When the contraction of the welfare budget is also taken into consideration the picture becomes ever bleaker. With PIP (the replacement for Disability Living Allowance) comes a contraction in the number of people who will receive help with mobility- either in the form of cars or money to help with travel. Add in the number of people who are losing money for help with care, who will lose their one bit of interaction. If we then include the ESA debacle where people are having their personal budgets shrunk to £69 per week when they have wrongly been found fit to work, the potential for people with disabilities to reach into the world becomes scandalously small.

People with disabilities need more support with access to the community but they are receiving less support with every aspect of their lives. The way this government has aimed their sights at people with disabilities is a scandal. It wasn’t good enough before the coalition, now the situation is desperate.

I’d like to say I have solutions to this situation but I’m feeling rather hopeless. We need the government to reverse the changes which disproportionately hurt people with disabilities but even when the WOW petition received enough signatories to secure a debate in parliament very few MPs showed their faces.WOW debate

We are bound to see more from the brilliant disability campaign groups out there who are desperately trying to highlight these issues but until this government is out of office I doubt we will reach a satisfactory position. If you are a non-disabled person and you have a friend who is struggling with their physical or mental health, persevere. Go out of your way to visit or talk to your friend; invite them to things even if you know they’re probably not well enough to go. When the invitations stop it is a stark moment in many people’s lives. If you can volunteer for community outreach projects I implore you to do so. If you can donate, then please do. Whatever you do, please, don’t forget us; we need an expansion in the people who care.

bottomfacedotcom: proud owner of lady parts: Writes, makes vulvas, swears. Past caring. Home ed. Parent of child w/ ASD ADHD. Has ME & FMS. Lucy tweets at @LUBBottom. She also has an etsy page: Little Shop of Vulvas